Spinal Cord Stimulator

Thanks and good luck and glad to here that you are pain free.  I think thats all my husband wants, I understand that it just masks the damage but as you say there is a lot to be said for being painfree.  Good luck hope all goes well.

I realize you wrote this some time ago but I am due to have my trial implant fitted on Monday and am feeling a tad nervous so I read your post with great interest. I am now even more hopeful of a successful trial period! Have you had your permanent implant yet and if you have , how is it going? By the way, I have spinal stenosis and arthritis in my lower spine. Had decompression surgery on the L5. Consultant said that although this was successful the L4 has now compressed. Further surgery is extremely risky so I have opted for the implant. I'd cross everything but it hurts! Hope you are doing well. Take care.

I am preparing for a trial of the nevro senza , can you tell me how you are still doing?

Curious - was your implant successful.  My husband in one week post op and having terrible abdominal pain.  He also has spinal cord stenosis and arthritis.  We are wondering if the leads are touching a nerve.

 

Hi,

saw your message about your husband's tummy pain after his surgery. My husband had the SCS surgery in September & after a few weeks, he now has a terrible pain in his left shoulder, he has had a x ray & is now waiting to have an ultrasound. On a bit of a positive note, he hardly ever gets the shooting pains down his legs anymore & has reduced some of his meds, gets a lot of pain from the control implant as well though :o( ...

Hi Karen,

We were talking awhile ago, I had my implant in September too, nervo senza, and I am having no relief at all and I feel like my pain got worse and feels like my battery flipped or something going to drs office now to get xrays to make sure leads didn't come undone and all the good stuff, but I'm still bed ridden pretty much, can't do to much or my pain increases, I'm so tired of the pain, I hope everything turns out OK with hubby, wishing you guys luck.

Cindy

Hi Cindy. I have just read your post. Firstly apologies for not have been on the forum for ages. I have been struggling like you with lots of pain issues. I am so sorry that you are still having problems and I hope they can get you sorted out. For me a resolution is hopefully not far away now. Initially it was thought that my body was rejecting the implant. However what I now know is that the leads both moved and the one I really need, the one on the left is not even in the correct position. I think what happened was that during the trial I got myself hooked up on a towel rail in my bathroom and probably dislodged the wires. During the surgery to make the implant permanent they didn't re-check the signals, they just sewed everything into place. Thus ever since that surgery I have had lots of pain in both legs as a result of the leads rubbing against the nerves in my back. My revision surgery is on 3rd December, so that just about cancels out Christmas as I start my 8 weeks of doing nothing again!!! Lol...This time I'm gonna spend the first month in bed and hopefully not move anything. I find the most difficult pain to deal with is that around the battery site. It seems to get worse, not better. Mine still sticks out and like yours almost feels as though it has flipped. It has deffinitely moved. It now sits right on my waist line. I have resorted to having some trousers and underwear custom made, so the wiast bands don't dig in.  Also as they only caused me more issues than they solved I threw all of my tablets away in a fit of rage the other week. I initially regretted that stooopid decision, however, interstingly enough my pain is no worse and I and I am now thankfully coming to the end of the horrendous withdrawal symptoms. For the first time in years, I actually feel semi human. I'm beginning to think that the whole drugs thing is just a 'bait' by the doctors to keep us hooked! I thought on day 4 or 5 after having stopped everything that I was going to die. However I'm past that now and feel more poitive and dare I say it even a little bit better. I started driving a few days ago and although I have no intention of going far, it is nice to have a little freedom again. Take good care and best wishes Graham

Hi Karen. I'm pleased to hear that Brian's leg pain is much better but sorry to hear of his shoulder issues. I have had a similar thing. I seem to get a shooting pain from where the leads sit in my upper back across to my shoulder and have in fact mentioned this to the Consultant. He says it is possible although unlikely that the wires are touching nerves. Apparently most shoulder pain originates from level C3 in the spine, up towards the base of the neck and much higher than the cord stimulator wires. I would be interested to hear what Brian finds out. Take care Graham

Hey Graham.

It is so nice to hear from you, I have to say I was really down having noone to vent/talk to that knows what we go through, as for the pain meds I will never get off of them, unfortunately, the xrays came out good they didn't move but he changed my program and if it doesn't work I have to call so he can change it, technology today wow!! I hope and wish you the best for Dec. 3rd yes I agree stay in bed that's what I did for the month bored but I just didn't want screw anything up, I will be thinking of you and praying for a speedy recovery but I always check to see if you were on, stay positive my friend, I'm trying too, as for clothes jeans hurt so much, right now I'm just doing sweat pants and dressy stretch pants lol don't be a stranger

Missed you my friend

Cindy xo

Hi Cindy,

My husband had his simulator implanted 3 weeks ago and has not been able to turn it on due to the battery over heating. How is your husband doing?

Hi Lisa. My husband is SLOWLY improving. His abdominal pain is lessening. He left the hospital with a walker and still needs it 3 1/2 weeks later. We think the leads must have slipped off to the side and touched some nerves which caused all the additional pain. Surgeon had to open up the incision and move the leads to the center. Now they are in the perfect location. His pain management wants him to heal for a full month before he actually turns on the stimulator. I still have hope that it will eventually help just feel terrible he has been through so much pain

Hi Karen. My husband is SLOWLY improving. His abdominal pain is lessening. He left the hospital with a walker and still needs it 3 1/2 weeks later. We think the leads must have slipped off to the side and touched some nerves which caused all the additional pain. Surgeon had to open up the incision and move the leads to the center. Now they are in the perfect location. His pain management wants him to heal for a full month before he actually turns on the stimulator. I still have hope that it will eventually help just feel terrible he has been through so much pain.

I'm happy your husbands leg pain is better. Hopefully the shoulder will heal. I noticed that my husband is stooped over because of the pain in his abdomen. This is causing the muscles in his shoulders and neck to hurt. Seems like it is an endless cycle

I'm considering getting the Nevro Senza SCS. I have several issues in my back as well, including a failed fusion at L5/S1 and leg pain and neuropathy in my right foot. How are you doing after a year?

 

Hi Linda,

I'm like you but with it on my left leg, failed fusion L5/S1 and then got the SCS nervo made my pain incredibly worse, the rep and doctor pushed me to get had it done I'm Sept and I so want it out. I lost so much more mobility and got really down and was afraid to do anything cus of the pain, I wish you the best but I heard that they are doing a trial in the USA for a dorsal root stimulator which I feel will help me out so much better, so I just hoping it comes soon as my SCS shut off and I feel like I have so what of a life back.

But every body is different and you get to try it first, it work for trial and maybe a week or so, but I hate it.

Good luck hope you have some relief

Cindy (Cynthia)

Hi cynthia:

I was thinking the same of nervo but like anything else I would have to carefully consider if it would be the right thing for me to do.  I already have a nerve stimulator but doesn't work like I wanted to.  Takes care of my legs but not lower back.  The doctor and representative of that company did guaranty me that it would work on my lower back but he said sometimes it can.  The low frequency buzzing was annoying and anytime I would shift my body, the intensity got stronger.  I got the non charable kind which means every 4 to 5 years I have to be cut open and battery be placed.  Similar to a pacemaker.  I think I will have it taken out completly because I haven't used it in over 5 months.  What a waste of $200,000 for trial and permanent.  It seems that doctors can talk me into anything.  Now I am wiser and seriously think what the pros and cons entail.  Of course the manufacturer wants to make profit.  So beware of doctors wanting to do surgery as well.  2nd and 3rd opinions are suggested.  I worry about one thing though and that is can my leads in my spine area be pulled out easily.  Over a year can cause build up of tissue material making the leads stick and more than likely surgery will have to be done.  Maybe the leads can stay in forever. The thing is that I suffer from so much pain having spinal stenosis and nerve damage.  I have been fighting this for many, many years.  I really hate the way I feel.  I don't want to be on biologics as it is not only expensive but over time it can be harmful.  There are just to many warnings.  I think the best approach would be holistic.  This would be another ball game for me.  It is a natural way using self massage, heat, water pool or jacuzi, light excersize, walking, and some sort of meditation or self hypnosis.  I am trying to experiment with this.  I had massages and it does help some, warm water and heat works pretty good but all are temporary measures but to get some kind of relief would be a blessing to me.  Within the past year or so, I know developed arthritic psiorisis which I don't like people to see.  Fortunately, most are hidden but I see some scars on my face.  I hope I don't get it like as on my back as it looks pretty bad.  I don't know if anybody here shows photos or even allowed so others can see it.  I know there are other health forums that let you do.  Anyway to keep things short, you mention dorsal root stimulator.  I will search that out.  And your right, everybody is different and pain that one feels is different.  Everyone here want to have less pain or at least diminished so it doesn't interfere with your life.  On that thought I wish you luck in pursuing alternative methods and have a very nice holliday.  byeee.

I wish to add or correct an error.  Too bad there isn't a way to edit it.  When I said that the doctor and company representative guaranteed me that it would work on my lower back, I really meant that they didn't guaranty me it would work but sometimes for some people it might.  I just wanted to make that correction not to mislead anybody.

Linda, My husband had the Nevro Senza SCS put in a month ago and has no relief from it. He is still suffering from the surgical site pain. They will most likely removing it. The company that sells the device said my husband would be back to work in a week. He is still out on disability because of the pain. It cost 15,000 for the trail and 75,000 to surgically implant it. The battery is big and puts off a lot of heat.

Lisa,

I had mine since September and they told me the same thing that I would be lowering my meds and I would have so much relief same device, my shut off and I feel better without it on, text the rep and he was like turn it back on, oh heck no!! Lol I actually feel somewhat like doing things instead of laying down in bed all day, I tried to go shopping and felt bad because I left the carriage, was sitting on anything possible because of the pain that was going around my whole entire back to both sides and legs, I definitely want this out!!

Best of luck and hope everyone finds some pain relief. Still in pain but not as bad with that SCS on.

Good luck!

Cindy ( Cynthia)

And yes Lisa it does put off alot of heat and I feel like I'm burning my skin since I can't feel that site, and I have a permanent bruise around my battery , so annoying, they should tell you right off what can happened so disappointed with the system and rep!!

Still living in pain!!

Hi Lisa and everyone else who reads this post. I had nothign but issues with my SCS and had the wires removed after 3 months. In my case, here in the UK they are not considering a VERY new procedure that I have had conversations about with Cindy. It's called a Dorsal Root Ganglion stimulation. They use shorter leads that target very specific areas of pain. In my case L4/L5/S1. The risks are supposed to be far reduced and the issues many of us have experienced with conventional SCS lessened. Might it be worth your husbands while looking into it? Good luck. I feel for him!

Oops bad spelling. I should have said they are NOW considering Dorsal Root Ganglion Stimulation!

Hi,

My SCS shut off and I have been feeling better told rep and wanted me to turn back on, umm no lol can't wait for that dorsal root gangelion!!

Cindy

I read your post and I hope you are doing well after your device correction. Please tell me the brand of yours. There are several I have discovered and they seem to be different from each other as far as what they do and how they do it. I have plans to have the Nervo HF10 implanted this month and am still studying pros and cons.

Thank you for your time, kilee

Cindy, perhaps the leads are out of place. Have you asked about that possibility?

Kilee

Kilee,

Yes I went and had xrays done, I am going to see the rep tomorrow, I told him I rather deal with the pain I'm in than to feel like I was feeling with the stimulator on, I really think this one is not for me, unfortunately.

Will find out what he thinks i should do tomorrow, I will let you know what happens.

Thanks kilee

Cindy

Hi Kilee. Well I'm not so far forward as I would like. I had my Medtronic SCS leads removed on 3rd Decmber as I had been having nothing but trouble. I still have the battery in situ (and that bloody hurts!). I have to go and have some electromyography and Somatosensory Evoked Potentials tests (no idea what that last one is!!) at the end of January. Depending on the result of the tests, the plan is to implant a Dorsal Root Ganglion Stimulator later in the year. I had trouble with my SCS right from the start as it was difficult to get stim down into my calfs and feet and it 'thumped' too hard in my backside. The battery has always hurt me and now whenever I sit down it pushes down on and against my sciatic nerve and really exacerbates my leg pain. I don't think moving it will make much difference. I am really torn right now. I am tired of countless surgeries, 6 in total now and 3 in last 3 months. My body has struggled to recover from this last one and being diabetic hasn't helped. I developed a (thankfully) mild infection and my scar is only just healed now. I have lots of little boil like blisters all over my body. Strong antibiotics have helped and I think I am now fully on the mend. But do I go on or have them remove the battery and be done with the whole thing? I want this VERY NEW ganglion procedure to work but have little faith. I'm so tired of hurting and nervous now of another operation, infection and the increased risk of paralysis that comes with each new procedure. The team looking after me are really great but I really don't know what to do for the best. It's a worry!!! Lol....... Is your SCS going to be a High Frequency version? I tried that but as strange as it sounds I found the lack of sensation too difficult to deal with after having been in pain for soooo many years the tingling of the stimulator was actually much more comfortable. I also couldn't be bothered with having to recharge every day. Me and my pain are very much partners these days and as much as I hate it, to be without any feeling is also very bizaare!!! Good luck with yours! Take care Graham

Graham

I'm sorry to hear about the complications with your SCS. I also have a Medtronic SCS that was implanted in 12/16. I know what you mean by the pain in rump- no pun intended. Thankfully I have received incredible relief from my SCS. They did 2 leads in the cervical area for nerve damage to my rt side neck into my rt hand. I am going for a follow up with my doctor tomorrow to check progress

I wish you all the luck as I know how awful it feels to have chronic pain

Good luck

Michael

Hi kilee

I have recently joined this forum. I just had a Medtronic SCS cervical implant on 12/16. I am not familiar with the NEVRO but I can tell you that I am very pleased with my device

Fell free to respond with any questions

Take Care

Michael

Graham my friend,

I was going to email you since I haven't heard from ya after your surgery, I know that feeling with that damn battery, I can't wear any of my jeans as it puts so much pressure on the battery, ugh talk to my rep today seeing him tomorrow I hope I get this thing out, nothing but grief, I rather just deal with my pain til we get that surgery over here as I now my problem is definitely nerve and I looked that one up and honestly I think that one will be a hell of alot better for me, glad you are on the mend, don't forget you do have my email so don't hesitate to write so we both can vent, lol your friend from the USA cindy xx

Hi C. Happy New Year! I do have your mail and I will write. Been a bit busy over the Christmas period. Hope you had a good one? Let me know how you get on tomorrow. Is the ganglion stimulation not yet available in the States? It was only given clearance here in November I believe. Not really sure I actually want any more surgery.  A butchers knife might do the job better!!! Take care

Thanks Michael,

I'm so pleased that the unit is working for you. I think it does have a good success rate on the whole. I hope that the battery settles down in due course. Mine seems to have moved and feels as though it is protruding more. I used to love a soak in the bath, now I can only manage the shower. Rgds Graham

I understand that the dorsal root stimulator is not available in the United States, no patent at this time. Yes the one I plan to have is the nevro HF10 (1st generation) device. It has only been in the United States for about 6 months . I wish there was someone I could speak with who is using this device but that seems to be unlikely . I have heard of only 3 being used in my town so far . I'm hopeful but I just don't know what to think anymore. So much pain for 15 years and 3 spine surgeries. I've tried everything except this and don't know where to go from here if this does not work. I don't want to keep taking pain meds.

Thanks for your time and consideration, Kilee

Lol graham,

I do hear ya on that, but I do want this out, this battery is in the worse possible spot ever and hurts my bones since I have no feeling there, but its still sore bruised and pushing out, I want to take it out lol wish I could, but I do hope we get clearance on that surgery soon, I think that would help me so much more than this one, I will email you tomorrow and let you know how everything goes.

Glad you are on the mend my friend

Cindy

Thank you very very much for your response. I continue to study this issue so that I may make an informed decision. Thank you again, Kilee

Kilee,

I am on that one, I had mine put in September, I don't like it at all, I was in more pain than ever and they couldn't get the right settings for me, I was in bed for three months, than one day it shut off and my life was back to the normal pain, the nervo made me so much worse, I know my pain is all nerves, going tomorrow to see what's next for me, the battery site is bulging and so uncomfortable, but I will let you know what my Rep says tomorrow.

Cindy USA

I was five days away from having the newest St. Jude Medical device implanted when I discovered Nevro online. I contacted the rep, but I guess it was too late. I have since had the SJM device implanted, and have mixed results. It's GREAT when I can set it at a relatively high level while I sleep. So much pain removed! But the low-level leaves me with mixed feelings. Time will tell, I guess.

Thank you for discussing brand names. I am doing my research and brand names matter in the decision I have to make. I am scheduled for a nervo HF10 in a few weeks and I want to make sure that I make the best decision possible with the limited information I can gather. So, thank you again. Kilee

Hey Bungle66,

Wow, you are having a tough time! I too find the tingly sensation of the stimulator to be comfortable (I have one installed right now - it's my 2nd one) I've had 5 back surgeries plus 2 neurostimulators, countless epidurals, I'm going through sympathetic nerve blocks now and have an upcoming RFA to try to help with neuropathy in my feet. I also have pain and burning in my left thigh from femoral nerve damage that one of the doctors did during one of my surgeries. And I too have sciatica pain.  I can't believe they put the battery near your sciatica pain!  That is one thing I told them not to do, I said that area was so sensitive to stay away from it completely - so the first one was in my behind, and the second one is on my right side below my ribs - it's big and it gets in the way sometimes.  I have been in pain since 2003 - car accident - a lady ran a red light, and a $100,000 settlement does not cut it! Not when $78K goes to the lawyer and medical bills!  And it doesn't cover ongoing bills, or not being able to work anymore!  Have you tried accupuncture?  I tried it once.  It actually took 25 visits before anything happened, and then boom, it was like I was high.  But I lost my insurance, and I'm on medicaid now and don't know if the insurance will cover it. 

Good luck to you, if I were you, I'd get the neurostim put back in, and have that battery relocated.  I know it's another operation and each operation seems more painful because you have such a high tolerance for the meds now, but the doctors never believe you.  After my last surgery for a neurostimulator, they gave me 10 mg of oxycodone 3 times a day!  Unfortunately, by now, that doesn't even cover my regular pain!

Good luck!  Hang in there!

 

Hi Kilee,

I'm new to the forum, but your post stood out because of your mention of the Nevro HF10 stimulator. I just got this placed on Friday for my trial. So far I don't feel anything with the exception of the procedural pain. I need to take into account I haven't done much since the procedure, but I go back to work tomorrow and so we'll see if my usual pain comes back. I suffered an L2 burst fracture and underwent 3 surgeries. I am fused from T12 to L3. I'll kept you posted on the stimulator. It's odd because you don't have to carry around a remote to control the intensity. But there is a remote they give you, just not sure if or when I'll use that. Talk with rep daily.

How are you doing now, Teresa57042? 

I hope your recovery went well and that you are on the road to recovery. 💕

Hello Mel,

Well went to Drs on Thursday, my battery needs to be moved to my stomach, total failed on this stimulator, I'm gonna have to get a cat scan on my fusion site because of the pain level is so high and plus I have sclerosis in there, might have to go back in there unfortunately, plus this stimulator is not for me, so I have to get another one really?!? I don't know how many more I can take, plus more shots in my neck cause I'm losing feeling in my arms again, my brother is home, and now my other brother who's bday was today he turned 54 has been in and out of the hospital for the past 3 weeks lost35 pounds had so many things done but no results, I just don't get it, we all have arthritis I know my knees ankles and every joint in my body, I am going to see my grand babies and daughter and son in law, for almost 3 weeks in new Mexico, my granddaughter turned 2 today, and my grandson will be 3 April 13th, so it's gonna be awesome, hopefully I will not hurt so much. Just wanted to say hello and see how you are feeling haven't touch base with anyone since my brother, so I just wanted to see how everyone is feeling and anything new, oh and my dr said I wouldn't be good for the dorsal root gangelion stimulator, I just can't believe failed fusion check failed stimulator check, what else can I fail at? I did a great job with my daughter so I'm proud I didn't fail at that lol take care and let's all start chatting again miss my group!!

Cynthia (Cindy)

Hi CIndy,

i have been following you faithfully.  Just today someone else came into this forum and wanted to know about the Nevro!  I tell them about the problems with the battery and suggest that they wait.  I certainly wish you the best of luck with having the battery relocated to your abdomen.  I did some research and found that it is not that uncommon.  What they don't tell you about the nevro battery is how BIG it is. And it will still have to be placed close enough to your skin for you to be able to recharge it every day.  Go enjoy your grandbabies in New Mexico and enjoy every minute that you possibly can.  I had to cut my visit to Colorado short in December but I think its because I got too cold plus I know I overdid it.  Don't over do it.  TAke each day slowly so you will be good for another day!  We love you and care about you!

Linda

Ahh thanks Linda,

Yeah it's been so tough with one brother and now my other brother, it's so nerve wrecking when a family member gets sick and you can't be there for them, I told him if he needs me I will be there after seeing my daughter son in law and grand babies, my lil grand daughter Haley turned 2 today and my brother turned 54 the one who is sick now. I just need a vacation so I can decompress from everything, so nice to hear from you talk soon

Take care and pain free one day

Cindy

Hi Cynthia,

Yes, I remember you spoke about your brother who was quite quite ill a few weeks ago and in the hospitall.  I believe he was having seizures, and he has a multitude of health problems and a wife and at least one small child Haley who is ill? Oh no, what is wrong with the baby? And waht is wrong with her mother, your daughteri-in-law that you must take care of her as well? I know that I always decide to lay down the law but I never do.  When I went to visit my dauhter at Christmas time, I told her, I can only babysit for one day, and please don't ask me to carry the baby (she is 2 1/2 and tall) because it will kill my back.  Of course, I ended up babysitting 4 days, and carried the baby ever time we got in or out of the car. I was a wreck on Christmas Day and had to ask my boyfriend for me to pay to leave 2 days early because I couldn't stay any longer. What is going on with  your other brother? Is he the one who has the 2 year old daughtrer Haley and the wife? Or is he the one with the seizures? If he is not the one with the seizures, what is wrong with him?

Honestly, I don't know how you will do it.  I have had 3 pretty good days now due to the RFA I just had.  But I easily overdid it with a trip to Home Depot and the Grocery Store. I have had to learn to pace myself.  I used to love to go places like Sedona which is a city about 2 hours up north from here - it's has canyons and rock formations and it is a city of rocks.  It is absolutely beautiful.  It has lots of little shops and cafes and places to visit.  Little hikes, playing in the water, etc., but I just can't do anything like that any more.

Linda,

No my brother fell ill into a diabetic coma died 3 times and we were getting ready to pull the plug and he woke up, just got home from rehab, my other brother Bill who lives in PA had a lot of arthritis like me, he has a sick wife my sister in law, well he's I'll now. He lost 35 pounds in three weeks had a colonascopy, stool sample blood work cat scans and his birthday is the same as my grand babies Haley, so I wished him a happy birthday, and he told me what's going on, I yelled at him. He was like you were dealing with enough didn't want to upset me, I said you did by not telling me. So I'm going to see my daughter Ashley, my son in law and my grand babies that are all fine, my sister in law that's the one in PA has been battling chrons disease for about 15 years she was in the hospital the same time my brother who lives with me, but my brother came with my nephew to say goodbye but he came out of coma, but now he's I'll. And I'm just going on vacation to relax and see my daughter and babies. So I just have to get dates after my vacation for the move of the battery cat scan and all that neck stuff. But I good little vacation will help me relax from all my issues with everyone getting sick. But my brother that is sick did have cancer years ago but it was in remission. I'm praying it doesn't have to do with that. I'll keep you posted on my health and family.

Don't over do it!! Lol I know you feel good and you push yourself. Take it slow and I will talk soon.

Cynthia ( Cindy)

Hi Mel, I'm new to this site. My pain Dr wants me to consider the Nevro for some back pain relief but from what I'm reading here I definitely don't think it's for me. Have had 9 back surgeries within 14 months, the last one being a fusion. I still can't stand most of the time without pain 4 years later, but I'm a mess with all the scar tissue from all these surgeries, which are blending in with the scar tissue from a complicated c-section years ago. I wanted to tell you that any relief I'm getting beside that from the percocet is from this brilliant physical therapist I've been seeing for 2 years now. She's on the cutting edge of using dry needling to break up scar tissue, adhesions, and get locked up muscles to let go and start working correctly again. I've been compensating for frozen muscles from various surgeries progressively through the years,,, actually using my shoulder to try and help my frozen hip to rotate. I have a very complicated situation, but she understands "how I tick", with much of my pain being nueral myo-fascial pain. Dry needling addresses this, along with the help of laser therapy and her manually moving and coaching me to perform very basic movements to reprogram my brain into allowing my muscle systems to work together again. I also see a very goodf chiropractor who understands all of this too and they're my dream team Perhaps you might consider dry needling since you're thinking holistic, but you need a really skilled one. Not a physical therapist who just had a workshop learning it, but. who's really studied it and is liscenced. To try and understand it better, look at her website North Jersey Physical Therapy. It explains dry needling much better than I can. Hope this can help you. I'm convinced I'd be in a wheelchair by now without it. ~kathy

Hi cynthia:

How are you doing?  It seems that there are some real problems with the battery.  I sure must be a super large one.  I always thought that the battery is in the unit itself.  Just to have a battery hang out elseware just doesn't seem to cut it.  I am sure the battery itself is protected.  I would imagine that the battery is huge so it can't fit in the SCS.  I have the standard one and there is a large lump near the unit itself.  It doesn't get in the way.  When you mention the stimulator, is it the NEVRO?  I have an appointment with a neuro surgeon in Jun to talk about the NEVRO. I read so many responses of people here that have the NEVRO and the problem lies in the battery overheating.  I am not sure what the UK has but the USA has improved it with a cut-off switch in case it reaches a certain temp so it won't overheat.  I've been told that the battery is square in shape so it is possible the edges can cut through the skin.  When these stimulators go bad, I would imagine that the expenses would be picked up by the manufacturer to pay for all your medical expenses.  What kind of shots in the neck you are getting?  Plus the fact that it causes you to lose feeling in  your legs, it tells me that certain nerves are hit which may be causing this.  When you mentioned your brother which had to be hospitalized and almost didn't make if I am right in saying this, how is he progressing.  I hope he is doing better.  Your other brother now being in the hospital just about on his birthday must be devestating to you.  Losing that much weight in such a short time doesn't seem real.  The food must be pretty bad there. (chuckle)    Maybe I will give it a laugh or two because we still have to keep o ur humor.  Without it, it would be a lost cause.  Even though we suffer so much from fibro, still it is arthritis.  When you see your babies, and it will be so much easier on your mind being with family.  You just can't wallow in all the pain and misery and you have to get a break.  When you get home, at least  you will have peace of mind that you were able to rest and rejuvinate yourself.  Everyone needs this as we can't continue torturing ourselves.  The World hurts as is.  Don't worry about touching base with me and others as we completely understand.  I am in constant contact with Linda so I get the scoop of what is going on.  I am falling so far behind in answering these letters as I got involved with so many.  As helpful I tend to be, still I can only reach the ones that I can advise in some way.  When I check my email to see who reaching out in Patient forums, I read them and see if I should intervene or not.  If that person is really hurting and don't know where to turn, then it is nice to know that I can help them not to feel that it is the end for them.  I especially like the new posts from newbies who are at least trying for someone to help them understand what they have which they are not alone.  It makes them feel good and you have a solid contact if there is a mutual agreement.  One thing though it does tie up my time but I usually don't mind. As far as my feeling?  blah, blah.  Wish I can feel lots better.  Talking to you and others really help and it is therapy for me.  I really hope both of your brothers to get well and I  know it is hard for you and them.  Take good care of yourself and have a better outlook that everything will be better.  Yes, do chat.  It will take your mind off of the bad things.  Waiting to hear from you.  

My best to you.

mel                                                                                                                                                                                                                                    

Hey Mel,

Yes it's the nervo, the dr said it's unfortunate that I failed it and the battery is pushing out like that, I have to make an appointment for when I get back from my seeing all my 3 babies and my son in law( think he would get a little mad if I said he was my baby too lol ) but yes he the dr is keeping this stimulator in but off and moving the battery site to the front ugh more problems with losing some weight I gained thru this surgery ugh, he wants in place for another stimulator or something because this failed arm numbness is when I fell down my old apartment stairs and had a discetomy from that and that Dr told me it would only relief some off the pain for a few years before they would have to go back in put more plastic disc in, I'm a mess, plus the sclerosis in the failed fusion area sometimes that pain is so unbearable I have to laydown and watch TV, I feel like a prisoner in my own body sometimes but I do try and do things, with that pain til I can't take no more, yes brother one who died on us 3 times is final home after being in hospital and rehab for almost 8 weeks, give or take and now my other brother is having problems and doesn't want me to worry about him cause I have so much on my plate

Was mad at first but I love him and told him we are family and family sticks together.

I will enjoy my 3 weeks of grand babies and daughter n son in law, knowing when I get back how I will be laid up for a bit. Thanks for listening it does help to talk to you and Linda!

It's great to get our frustrating and make one another smile cause we would not be here if we didn't!

Talk soon hope you have some pain free days yourself!!

Oh PS I'm afraid hes going to have to go into fusion and reinforce it cause of the sclerosis that hurts a lot, that pain is the pain that eats away my days but smile on and life goes on

Cindy ( Cynthia)

Hi Kilee,  I'm new to the forums so am searching for any info I can find on the Neuro HF 10.  My back surgery was not successful and my pain pills are not doing the job. Mayo suggested that the Neuro HF 10 might help.  Did you have the Neuro HF 10 implanted and, if so, how are you doing?  

Thanks so much for any info.  Good luck!

Marie, In case you didn't see it above, Cynthia has gone through HELL with the Nevro.  The battery is fairly large and it is rectangle (not square) and I have read from at least 2 different people in this forum that the battery was not placed properly and ended up CUTTING through their skin. Read what Cynthia has to say in the comment above yours.   Here's an excerpt from Cynthia Yes it's the nervo, the dr said it's unfortunate that I failed it and the battery is pushing out like that, I have to make an appointment for when I get back from my seeing all my 3 babies and my son in law( think he would get a little mad if I said he was my baby too lol ) but yes he the dr is keeping this stimulator in but off and moving the battery site to the front ​"

 

It may be a good product but I think the battery still has problems to be worked out.  I've heard that it helps with pain in your back and in your legs. Just make sure you google the name of your docot and the actual surgeon who will do the implant and make sur eyou are comfortable with them.  Good luck to you!

Hi my doctor is pushing for me to have an scs fitted. I have had a failed L5/S1 disectomy and a failed L5/S1 fusion. 

I am in the UK and we have the NHS. Can I ask a personal question that you do not need to answer. But when you say it cost $90000 to have it permantly inserted, Do you mean you paid that out of your own pocket? or from a health insurance scheme? 

Stuart

Hi Stuart! There are so many posts on this discussion that your question might not be seen. You might want to post this as a new discussion so that our UK friends who have had to pay for their SCS can see it. Good Luck! ~kathy

Hi Stuart,

We are so lucky in the UK that we do not pay for the SCS devices. I think it is true that in the States most folk do have to make a contribution and it can run into $1000's. Should you go ahead and have a trial? Absolutely. Sadly for me neither a spinal cord stimulator or the next generation dorsal root stimulator has worked BUT I would always have wondered what if had I not tried them. The trial of the SCS is not too bad pain wise and for many, many people it works incredibky well. Remember, those of us here are really the guys and girls for whom the procedures have failed. If it works, you will be out living your life! Do lots of research because the technology is moving forward all the time. I had a Medtronic system but the Nervo seems to be the best and if offers 'high' frequency' stimulation, so whereas I had a pleasant tingling sensation the Nervo gives no sensation. You might end up pain free! Good luck my friend and keep us posted.

Graham,

I am so lucky to have insurance and 2nd insurance, because I am on disability I get a check from our monies we contributed when we were working, I hate ignorant people who think people take money from our government I just barely made my quarters to be on disability benefits so because it's not alot the state pick's up Amy left over balance, it is so sad how our country deals with that issue, now there is a law no insurance at the end of the year people get fined for having no insurance so sad the insurance is not cheap and they only get what you pay for, it's sad how the government gets away with making the poorer poorer n the rich get richer.

We are one screwed up county. Ugh

You are not alone Cindy. How are you? Feeling any better? Here in the UK we are completely messed up as well. I don't even qualify for disability benefits, even though I paid into the system for 33 years! They claim I'm not disabled enough to need help and I have a small pension from the airline I used to work for. Our National Health Service is falling to pieces at the seams with more and more immigants flooding the country. THEY do qualify for free everything immediately! I'm praying that we vote to leave the corrupt European Union and start to take back control of our borders, health, education and juduciary systems. It makes me sooooooo cross. Still enough of my whining. What's occuring and what is the plan they have for you going forward? I'm through with surgery now. I can walk less well than a week ago and it was bad then. I'm still very swollen and even though the battery is gone, the scar tissue issues that it has caused are only just starting to manisfest themselves. I have a white hot burning pain pulsing down both legs and around my genital area. Nothing in my medicine cabinet helps and because I've also been taking anti inflammitaries (the spelling looks worng) my hiatus hernia is playing up and giving me terrible stomach pains as well. ARRRGGGHHHHH...............Still the sun is shining and I'm going to force myself to go for a little walk. This is not going to beat me. I'm looking into alternative therapies for when my wounds have healed up. I have one big scar across my left buttock and 4 smaller inscisions to the right of my lower spine where they tried to put the dorsal root ganglion stimulator in. Gosh they all hurt so much! never mind. Take good care and lol Graham

Also had stomach problems which doc and medtronic said they never ever heard of that. After a month of being put off I went to ER. I had breathing problem a very large abdomen and leg weakness and lower back pain. Mri and chest xray showed nothing they said . Now 2 months later legs are so weak hardly able to stand and bowells not functioning right. Never had a back problem until now. Pinching in digerteny places. Srill habe. Breathing probles when stomach gets extended way....out lowete stomach flat? PM doc dont know what is going on, maybe hetnia he says. Afraid I am going to be in wheelchair soon. Very exhaued ceeling too

Hi daryl,

I've just seen your note to Cindy. Have they checked you for something called Cauda Equina Syndrome? It is a pinching of the little nerves at the base of your spine and they can easily be damaged during back surgery. The condition can cause bowel and bladder disturbance and severe weakness in the legs. It can be VERY dangerous and if not picked up and treated can cause irreversable damage and total incontinence. I don't want to frighten you but it is worth getting an MRI of your lower spine or at least getting someone to discount the idea. The only treatment is a spinal decompression operation to relieve the pressure on the cauda equina, called that because the miriad or nerves resemble a horses tail. Good luck and let us know how you get on.

Rgds Graham from across the pond.

Graham,

I just wrote you my friend, I hope all is well or as we can expect.

Thinking about my friend across the pond

Cynthia ( Cindy)

Hi Cindy,

How are you pet? Is life treating you well? I'm still much the same really. My back is worse than I think it's ever been and the nerve pain in my legs remains constantly bad. My left side was always my worst by a long way but now both are pretty much the same. I see the specialists AGAIN on 16th August to find out what they have in store for me next. I think next on the list is the Nevro HF10. Don't know what to think about it really. I've read horror stories here about it BUT by the same token I know it has really helped some folks. The worry for me is not being able to have MRI's in the future but CAT scans are OK and they can capture most 'nasties', so maybe it will be alright. It's just so scary. I am desperate to go back to work (of some description) but until the hospital finish 'playing' with me who is gonna want to employ me. I don't really have any good days but guess I am learning to live with the constant pain and truly believing it might never get any better than this. Here's hoping I don't live to be 90!!! You OK? On the plus side the weather is nice at the moment and I have booked to go on holiday in September for a week of slobbing in the sun in Spain. Take good care and ttfn x 

 

Graham,

Wow you've been through alot, and I'm kind of glad you are kind of ok. And glad to hear you are going to Spain, nice!! The Nevro stimulator isn't working for me they turned it on so i can feel sensation, but it made me feel worse and my muscle hurts, so I turned it off again they just don't want me to throw in the towel but I am. I'm so glad to hear from you!! Miss our talks!!

Miss you

Cynthia (Cindy,) your friend til we go haha I don't want to live til 90 either we be in a home or nut house haha your friend across the pond.

Do you know any results from people who have the Medtronic or Boston Scientific SCS.

Thanks for writing back. I know something is seriously wrong. I had this implant trial 10 years ago and no problem other than it took 6 hrs and moved as soon as I turned my head. This time it stayed and woeked wonderful. But as soon as I sat up problems started. Pinching between neck and shoulder blade and nausea. 2nd day no better with terrible acid in esophagus and then trouble breathing. Had terrible muscle spsms all over even into stomach muscle. I kept calling the doctor and He kept saying it was not related to sugery just coincidence. So after a month went to er and that doctor was very cocerned about going in at the middle of my back. He called this doctor and had him see me the following morning. But the mri of the cerv and thorax he said showed nothing. After discussing my stomach symtons thought I have hernia? Make appt with a doctor to check this...

Hi Graham! My pain is getting worse since I could no longer afford the $100 a treatment dry needling that was helping to release all of the car tissue and muscle spasms from all of my surgeries. I have pain immediately upon standing and have not booked a vacation to the beach for the first time ever this summer. I fear my days of walking in the sand are over. I'm so glad to see that you're able to go on vacation. I can begin treatments of any kind again when the new year begins and our medical benefits start anew. I was wondering if there's been a change in your benefits now that Great Britain has left the European Union? How did that affect health insurance and disability payments?

Hi Kathy,

So sorry to hear that your pain is increasing. Mine is kind of off the scale right now and although I AM going on vacation I think it was the wrong decsion to take. Thankfully where I will be staying is right on the beach, the friends I am travelling with are fully aware of my limitations, are fantastic and won't push me to do things I'd struggle with. As I'm ex airline crew I will also receive a comfy seat on the aircraft which helps immensly.

Regarding the EU, as of right now we are still a part of the European Union and will remain so until something called Article 50 gets triggered. That will start the 2 year 'divorce' process and is not likely to even commence until the beginning of next year. I voted to leave and cannot wait for our separation to be full and final. I hope our Government manages to secure us a good deal. They should! The EU needs us FAR more than we needed them!! Actually the EU has no bearing on our healthcare. The National Health Service (NHS) is and always has been free at the point of contact. We are charged nothing for any treatment (except medication prescriptions which currently cost about £9 for each course of drugs. It is a flat rate for everything unless you are exempt. I'm diabetic and therefore have an exemption). Both of my SCS's and all follow up treatment, physio etc cost me nothing, although I believe to have had them done privately would have cost upto £150,000. That said nothing is really free. We pay something called National Insurance contributions, an amount of money that is deducted directly from our pay packets from the time we start earning after leaving school, that pays to run the NHS. The Government currently makes a £12 billion annual contribution but it is currently running at a massive loss. I could explain why that is but this forum is not the place for that devisive conversation!! I suspect that our Government would really like to introduce a private system much like you guys have in the States but the British people I believe would fight to the death almost to keep it as it is. It really is VERY good and I cannot speak highly enough of my consultants, even thought the results for me haven't been good. I pray some pain relief will be forthcoming for me and ALL of us on here. Until then I go forwars and try to remain optimistic. Some days that is VERY DIFFICULT. So what is next for you? I hope whatever your doctors and you have planned is a success. God bless Kathy and all the best Graham

Your concern is one of my concerns, Edna! That's my point...Have had 2 lumbar laminectomies...now it's degenerative with at least 2 pinched nerves.  Have been stable on pain meds and considering the Nervo but had an exacerbation 2 weeks ago.  I know that we are given pain as a warning signal for injury.  So...if I became pain free, wouldn't a legitimate consequence be injuring my back further? On meds I have been able to keep up a decent enough walking regimine to actually (just visited my cardiologist) to irradicate my cardiac issue and my pulmonary hypertension!  I can't afford not to exercise.  However, I'm afraid that if I don't feel pain, my back will deteriorate much quicker.  Also, it's not just pain that many of us suffer...it is balance from crumbling vertebrae and discs, causing further symptoms to other areas...like me...a lop sided posture/xray and a trochanter bursitis. What happens with all of this? Also, can you swim with the HF10?  I would like to hear patient replies not related to reimbursement or advertisement for the company.  Many of these physicians are given perks to give their opinions.  Thank you for anything you all have to offer.

Kilee, I've had my HF10 going on 5 weeks now, and it has been very successful for me so far. I'd been in pain for 10 + years, and have a low tolerance for pain meds, so this was a good choice for me. I'd responded th khi's inquiry and left a pdf link from Nervo, it's the 'Physician Implant Manual', if the moderators allowed it. if not, you can search the title and get the link.  This document was very helpful during my reseach, trial, and decision-making process. As for the implant, the procedure was done on an outpatient basis, took about 5 hours total, and it is working great, a little discomfort at the implant site, and there is some getting use to the daily charge routine. Overall, the best decision I could nave made. Good luck. TRL

Hi Cindy.  You may have seen my post but I have been having stomach problems along with beathing at times too.  Did they ever find out why a trial would affect stomach?  I was very bruised and still am some after 4 months.  I cant get much help other than MRI shows minimal space in cervical and "never heard of that" for anything I say , like the upset stomach, breathing and leag weakness which travels around to pelvic area.  I am so frustrated, mad and very worried.  WC will not approve a lower lumbar MRI but will do another of cerv. and thorac.  I am very bruised still down at lower back??

Edna, I'm hoping to get a nevro HF10 installed within the next few months. I see that you have a nevro Sensa.

Is this the same as the HF10?

I'm on Medicare.

I did some web surfing using nevro HF10 and Medicare. I looks like it's covered.

Is that your experience?

I hope you are having great results from your surgery. You and others on this forum are my guinie pigs.

God bless

Frank92854,

Yes I am on Medicare ( disability) have the Nevro HF-10, I hope you the very best with the system as for me it was a no go, just had to call the Drs office last night and the Nevro rep about the pain. I'm experiencing which he is trying to say has nothing to do with this stimulator, which I call Bull crap! I felt like I'm getting electrocuted I was in so much pain I went to the floor and I thought I was ok was trying to go to the bathroom, and almost fell off toilet as it did it again. Please do all the research possible I would hate for anyone to go through what I have been through for 2 years, I had to have a revision surgery because of placement it was pushing out of my skin and couldn't wear nothing but sweat pants, my life was a mess and still is.

Good luck and please research as now I am paying for it and I honestly don't think I deserve this, im such a good hearted person and try my hardest to smile and just hide the pain. But what I'm going through its getting real tough.

Good luck best of luck

And please be safe

Cynthia from USA Connecticut

Thank you! I have had 13 fusions in my spine. Vertebral plasty. Misspelled? I am on low doses of opiods.

I am sick of failed surgical procedures and I don't want another if this doesn't work. I have spoken with 2 people who regrets EVER having it done. AND 1 person says it works. I appreciate your honesty.

Cecille56716,

Are you still in alot of pain? Also what is that caused by? As I said idk how much was said in the last message, but it started as just a slightly slipping disc as I was sitting on the floor filing I was a medical biller/ coder and I loved my job! As I became pregnant in high school but graduated and had a full time job and was going to school at night, I had all honors and high grades in the course, which I thought I was just going to just pass by as I had to study at breaks and lunch as much I could get in as I worked as a picker at dooney n Burke the expensive handbags, my daughter was about 6/7 years old, so I sacafriced my time for her so we can live a better life than just getting by, so as I got into the field made a little company alot of money as I did old claims that got stuck in system or needed missing documents or the missing codes, so my six months in that company gave me a head start to work for a well based hospital as a temporary employee but they bought out my contract, and I was on the road to my dream job. I was so proud as I lost my parents I'm 1993 mom @ age of 54 and dad 17 months in 1995 at the age of 57, on my bday, so I was only 22 n it was my bday for my dad, we called it broken heart he missed my mom as he was married to each other for 36 years and i was the baby and late my mom was in her late 30's I was one of 6, so as I sat on the floor concrete with little room to file for 45 minutes to an hour, because 2 girls, ladies, were right behind n front of my drawer so I had my leg folded funny in on side of drawer and other leg was straight with the drawer so being like that in a tiny space for that long I went to get up and felt something pop and the pain started, as I went back to my seat I could hardly walk as the pain was bad, as I told my temporary supervisor what had happened plus a few ladies in the office I covered my butt, so I worked the day out, went home made dinner played and helped my Daughter with her homework and took a nice hot shower, so my daughter actually came and slept with me that night as I laid on the heating pad 20 minutes on 20 minutes ice, finally fell to sleep and woke up the next day to get ready and boom on the ground I fell, so I crawled to the phone and called my supervisor as she was in early as she had alot on her plate, thank God I filled out that form before going home, whew, but I started seeing the workers comp dr through the insurance company at work, he suggested physical therapy pool as the last resort of months of trying to injections nerve blocks and what not so as the girl put me in the pool she was watching soaps and eating an apple and not paying an attention to the pool jets low medium or high it was on high next thing i knew I screamed and I felt alot of pain she had to take me out in a hoist, as I tried to walk crying in pain, I lost my bladder, and could hardly feel my legs they had to help me out of my bathing suit and they let me drive in that condition. So I barely made it home my sister was home and she had to carry me up my 2nd floor apartment, now I'm just peeing cause I couldn't feel my sister looking at me with such fear as I said what and she pointed down to the puddle as I stood there in shock with tears pouring down my face i called the Drs office and my lawyers office, lawyers called me back stating that they were claiming I never went to appointment I was a no show which you have to fax over to WC for payment so they totally lied, and told lawyer I didn't go but WC had info of me there, so dr called me back and said get your boyfriend and get to the hospital ASAP as I did so I thought I would die from the excruciating pain from every bump, I finally get to hospital dr is waiting for me in er they had some new dude doing the blood drawing so I have awesome veins he ended up going through from one side to the other and blood everywhere dr came rushing in pushed the guy away from me applied pressure and got the setup for surgery in right, dr wasn't happy, next thing I knew they already gave me high dosage of meds for pain as my poor family watched in horror as I was saying my I love you's to my daughter and family members n bf at the time, so hours after the surgery I woke up in such pain, with such burning sensation and after nurses being on strike I was let go to go home but I had numerous cat scans and MRI's with contrast done to no avail to say there was anything on my nerves, so home I went with a feeling of a torch burning my foot(left) up my leg to my back

So that was 1996. Story will continue

Cynthia (Cindy)

Hi Bungle,  How are things? I really feel for you and from reading your posts you are a superior human with incredible strength! My mum has had chronic back pain for last 5 years - (20mg morhphine daily) struggling but coping and have some sort of quality of life. In the last 3 months she has had debiliating back spasms lasting hours at a time the pain can even go into her legs. A&E cant do anything, we're maxed out on muscle relaxers and diazepam and no one seems to know what's happening. She is bipolar and the pain has made her suciidal (with a few attempts). Dr do not have a clear reason for her spasms or even pain to be honest thye have said degenerative disc disease but have said an operation would help. Do you think the SCS might be worht a shot to help with her pain? We have UK pain clininc in about 6 weeks. Her spasms are basically a daily occurence/ or eveyr other day sometimes a few bloody times a day. She is now on 60mg morphine a day and her pain is through the roof. I would love to get your thoughts, I am at breaking point if I am honest. She is quite young (48) and I am about to be 25 and hte last 3 months have been unbearable. 

Havent** said an operatioin will help - as I do not think they are really clear on the source of the pain or why it is so bad 

Hi debbie27473,

again I realize you wrote this a while back but I was ordering if you went ahead with the trial and possibly implant. I just had the trial started yesterday and I am kind of miserable. Sounds like we have similar problems with pain. Mine is lower back with 4 disc compressions and two bulges with annular tears. I have damage to my sciatic nerve that is not fixable so back surgery failed to fix the pain in my back or the constant pain down my right leg to my foot. My pain management doctor thought this was best route for me to go. 

I know now it is day one and I am giving this the full week try to see if this weird electricity feeling is something you can get use to. I still have pain in my leg and back but I think it might be somewhat better. I have noticed I can't feel my legs and my husband noticed it was turning blue from being so cold and I didn't realize it. Is all this anything like you experienced??? Any advice would help me, I am feeling a lot confused and the different sensations mixed with pain is really disorienting.  Thanks 

Hi Sasha! Welcome! I noticed no one has responded to your questions about your mom. I know sometimes Disc Degenerative Disease can roll off doctors lips like its no big thing. I think this is a misconception among us patients because we have no idea on the daily how often this diagnosis is given however it does not diminish its tragic progression of chronic pain symptoms. I'm not tossing it all up to DDD, as I have a form of progressive/prominent DDD and have had it diagnosed for over 10 years now. They can be many layers to this disease once we start to study it. Read medical journals on the subject if you can access them. They is a lot of info out there not on the basic "webmd" type sites. As a concerned child for your parents well being first and fore most you must urge and insist the doctor send your

Mother to a neurologist to get an EMG done. This will tell the healthcare team a lot more than what an MRI with dye or cat scan can. She also needs a complete blood lab work up. A little of my background is: during a MVA a lady hit me and spun my vehicle into oncoming traffic. I woke up with a broken fibula. They had done an X-ray but nothing positive came back so they sent me home. Two weeks later I went to stand from sitting and could not. I scheduled with doc immediately. MRI came back with C4-5 budge and L4-5 herniation with annular tear and stenosis. I had surgery in under the year for L4-5 microdiscectomy. That was considered a failed back syndrome so I went on 7 more years of conservative treatment and lots of it. Over the years with scans and imaging the main concern was how fast DDD was progressing. Modic I and II type changes caused end plate erosion. Think of your end plates as the outer plates of a vice now put a pillow in the vice and squeeze. The pillow will bulge out anywhere it can. This is DDD. By this time I had C2-3 bulge, C3-4 bulge and C4-7 Herniations! In the lumbar it became L2-3 bulge with L3-L5 Herniations! I have never operated on

My neck and never will. This past February I had enough and opted for multi level fusion L1-Si. 5 months later revealed the cage migrated out of the surgical spot and now is again causing stenosis. I had the Nevro HF10 trial for 11 days it wasn't until the 7th day that I achieved over 75% pain reduction on pain that had never ceased in intensity for 10 years. I have an opiate and Opiod sensitivity so medicines have been tricky and mostly I deal with daily pain that would make people want to leave this earth. I research um...quite a bit. I took 3 months of intense online searchs for anything and everything spinal cord stimulator. The Nevro exceeds them all. I'm a regular person and do not get paid to endorse this NameBrand. I've just met many people online who have different models from different manufacturers. My church friend has Boston Scientific and my Uncle has Medtronics. They both hate theirs. My friend Betty gets shocked and zapped by hers at random times, does not control her pain and the battery heats up when she charges. My uncle has the same issues but he has new leg pain that was there before the SCS. I think Nevro will change your mom's life! And seems like it will also change yours. I had the implant done 8 days ago and I'm already completely off MEDS and only take Tylenol extra strength in the mornings. I have an incision at my thoracic T8 level which paddles were placed to cover 11 vertebrae dorsal roots all the way down to SI. I asked for the battery pack to be placed on the left because even with Nevro therapy trial I still had about an inch of sciatic pain in my right butt cheek. Each incision my husband has measured about 4 inches. Everyone in forums complained about the battery sites but I'm having no issues. Nevro told me initially I may not be a candidate because of how thin I am. I'm 5'6 at 107 lbs. believe me I eat their records indicate the smallest person they've installed on was 4'9 and 100 lbs. with the body fat measuring tool pincher they had trouble finding a spot thick enough. I told them the fatty part is bottom of my bum. They don't like to install where there will be constant pressure but it was all we could do. We weighed our options. With Nevro you can never have an MRI and I believe a Cat scan as well. But as my husband said nothing else has ever given you relief so even if your DDD ends up in every single level there Would Be Nothing Anyone could do besides going through more surgeries that don't work. Yes it gives us certain peace of mind having current imaging on the kinds of spines we have but unless you have some rare spine disease your mothers issue will continue to be DDD. Pro's vs Cons and I'd advise you guys to make a list together. The Number one convincing Pro for us was it can absolutely be removed without major issue. Once the paddles are installed they stay so only the battery has to be serviced and you don't have to have another spine surgery in the 8-10 years of the battery life. And I got to try it on like a pair of shoes. If it works it works. If you have a choice do not do fusion or microdiscectomy first. If given the option try the SCS...and Nevro only!!! Why put something less superior with class action suits against them in your body? Nevro is the only manufacturer that does not have product recall or litigation against them. There's a reason for that folks. Do your homework. I know not all doctors push Nevro but find one who does. Good luck and feel free to ask any questions at all!

Hi me177,I'm new to forums,have not been able to do much of anything since my fussions in 2011, on L4/5,S1. After surgery my nerve pain tripled to the point where laying in bed 90%of the day the only thing that helped was meds. But,because the meds caused there own extreme set of problems,I was not able to do research on my condition. In 2013 I had the surgery for the spine stimulator,and at first it helped, but after acouple of months I noticed my spine was curving in. I cut down usage hoping that would help, unfornately,it didn't. So in 2015 when my battery stopped working I decided not to get a new one and the curvature in my spine has straighten a lot, but not fully and because I was on less medicine with the spine stimulator,I'm left with extreme nerve pain. One of the main problems is after stopping use of the SS my lower back and both legs feel like a very strong electrical current running down my legs all the time. Like you, I wanted to try and find ways to ease some of the nerve issues, I found out that moister in the air makes your nerves expand, so I got a dehumidifier,which helps take the moisture out of the air. It has helped a lot ,since the insurance keeps trying to take my meds.  down, if I didn't have the dehumidifier I don't know what I would do. I still have to take two nerve medicines along with a couple pain meds.,but I wouldn't be able to tolerate the lower dosages without the dehumidifier . I'm still bed ridden and have a power wheelchair because basically can't hold me up for more than a short time on my legs. I'm going to look in to water pools, massages,I'm not sure about the rest, but I'm going to look in to it. Also,if anyone has had the same reactions when stopping the spine stimulator ,please post it,I would like to see if there are any similarities in are conditions. Hope the tip about the dehumidifier helps.

Good Luck,Karen

 

Thanks for the dehumidifier tip as I too have serious nerve pain in back, pelvis and left leg I will be seeking one of these as my opioids are only taking the edge of the pain! 

Wishing you all the best on your pain journey 

regards Dave

I have a 50pint unit in dehumidifier , tried smaller units,but their not strong enough to draw air out. It takes about 3 days until you feel difference. I also keep it programmed on OC or 30% and it works great in an enclosed room,but leave door open so the hot air it pushes back out has somewhere to go. Let me know how it does for you.

karen

Hi Mike

I have the Nervo implanted about 6 months ago, still on the same program

and setting as when I left the hospital.

Although the doctor did a great job implanting the SCS , feel I was pushed into having the machine.

The people at Nervo are very helpful, always calling me and trying

new things but to no avail.

Wished it would have worked.

I would stay away from money hungry doctors.

I'm on my 4th pain dr in 3 years, this dr is trying different

things

I wish the Federal Gov't would leave these dr's alone.

Wishing everyone good health, please God send us relief.

Thanks for the humidifier details I will look into getting hold of one, though I might try renting one for a week just in case but you've got to be willing to try anything and everything in our search for a pain free life! 

Hello, Lisa Can you tell me a bit more about surgically implant  The battery is big and puts off a lot of heat. I just had my implant done a few day ago my pain is worse. thank you

Hi Cindy! I'm wondering if it's ever gotten better for you? I had my permanent placement August 1st and I'm 2 months out and feel worse than ever. I've wondered if the wires have moved, but my dr says it can take months to recover fully. What ever came of your situation? I'm scared, disappointed and so frustrated right now. 

Rachel 

I am so sorry to hear that you are worse.  I was actually asking for my brother as he is the one with the back that looks like he got run over by a truck per his pain management doctor.  He just did the trial but he did not feel any improvement - actually worse therefore he did not have the full surgery.  He already 3 years ago had a fusion and laminectory but pain is bad.

?What do you mean the doctor when he says months to recover?  from the implant? or once they are take out?  If they hurt I would recommend having them removed.  First get a full expalination from him,  On your phone you should have a voice memo.....tape it because it is difficult to get everything they are telling you. When you get home you can listen carefully and look up what you don't understand.  My prayers are with you Rachel.  Hang tight they are always coming up with something new.

xxxx

I'm in trial phase now. 3 days in. Having severe pain from procedure. Did you have any discomfort during trial? Difficult to assess pain relief in low back due to this pain. I have noticed less leg/foot pain, tingling and numbness. Just concerned not being able to give rep accurate back pain level.

Who was your Nevro representative? The two I know travel all the time and are only available to help me if they're in town because my doctor is doing an implant. I like to have medical personnel who can be available on-site if there is a problem.  Because the only time you get to see a rep is if you or someone else is having an implant, I feel Nevro is more interested in selling stimulators than caring for the people who have them. .

I've got the Abbott formerly St. Jude implanted...As far as that goes, I feel the VERY same way & this all comes down to money.  I haven't had problems with getting the programmers until this last one assigned to me,  Doesn't bother to return my calls. Told the "dr." that did the implant I have been ignored by this individual twice so far and was told that is unacceptable!! REALLY?? Ya' think??  I replied there is a ;lot that's unacceptable about the whole thing.  I find it truly interesting that the trial went GREAT!! But this permanent is a whole other story...I want it removed, pray I can get another Dr. my insurance will cover!  Best to you...

Was your unresponsive Nevro Rep Taylor Whipple? He did the same thing to me that you said happened to you.

 

Mine is an Abbott formerly St. Jude stimulator. Now I see I wrote that already! lol But the permanent one is totally different model even though the programmers still try to tell me "Oh no, it's the same one as the trial" and I KNOW it's not! I was given an option of one with a 10 year battery life...made sense at the moment.  Without thinking "If it works, don't fix it" meaning of course I should have stayed with the trial one.  The programmers still try to convince me it's the EXACT one as my trial! I KNOW better! I'll see the "Dr." one more time & ONE more re~program, So much other I can tell  concerning this.....Just insane with the indescribable pain we all know far too well. 24 June '18 will be last try on re~program for me a year later.  Wishing you all the best...sure hope I will be able to come back with a positive report!  

Oh boy I know what you mean.  Had the same problem.  Programmers said the paddle would give better relief as it had more variations in programming.  Hogwash.  I went through 2 programmers.  The first one quit after only 3 mos.  saying, I heave done all I can.”  Really.  Demanded a rep who would work with me.  The next one another 3 mos.  I had enough of being their lousy guinea pig.  So out it came.

Been dealing with excruciating pain ever since.  Tried, chiro, Pain mgmt, who said get a pain pump.  Replied, “no more surgeries or foreign objects in my body.”, acupuncture, 3 rounds of  CBD oil with o THC.  Now using CBD topical cream.  Guess next move might be medical marijuana.  Cannot live in with this pain.  Still looking for something that works.  Hope you have a better outcome.

Excruciating is the word I've been using.  They want to know if it's burning, aching, throbbing, etc....I don't even have a word.  I've told them it crosses my mind to take a shotgun and blow my leg off...Of course I'm not going to do that but it just crosses my mind. I'd be worse off with phantom pain anyway!  I am ready for nearly any other solution now.  I just want to go & live a half way decent life instead of being stuck in the house !  Hope to have a better outcome with this programmer.  Hope you find some relief too, soon.  Wouldn't mind hearing how you are doing if you are up to it.  Take care

It’s amazing how similar our pain is and so many others.  Mine is burning starting rgt, hip and down the right leg.  Then when I stand it creeps up to the middle of my back on the right side. Now if affects my driving.  This is not how I envisioned this would turn out.  I never expected total pain free, but I sure didn’t envision I would wind up worse then when I started on this stimulator journey.

I contacted the company direct.  Oh sure they were so nice anspd attentive promised I would be contacted by someone in the VP office.  Here it is June 2018 nada.  Good thing I didn’t hold my breath.  Upon removal of the paddle, I brought with me the controller, which is an Apple IPhone.  I still have everything in the box.  Evidently they do not want it back.  Wonder how many other patients who have had their stim removed and still have their controller.  Would make a nice cell phone.  LOL. It seems the new CBD cream is helping at times.  If I can figure how to maximize the relief, maybe just maybe, I might be able to do shopping for at least an hour and not cringe as I leave the store to hurry home and lie flat while waiting for the spasms to subside.  Gee aren’t we so lucky to be chosen for this hell.  I hope you get your pain relief.  Keep me posted.

You paid for it! (literally) so yes of course you can keep your worthless piece of equipment!!  Ya' know...I absolutely dread waking & having to get out of any prone position, it's the only position I have no pain with.  Within 30 seconds (or less) & sometimes I even get 45 seconds!  and then in that time frame the pain is already unbearable.  So there really is no wonder a person would dread getting up.  Being in Colorado is a very good thing for me...I will be going to a dispensary soon in Denver.  I'm so done with pills that do nothing anyway, just have the withdrawal to (not) look forward to.  Hopefully the product(s) I get will help with that as well.  Will finish this ASAP! Laptop is acting up & frequently deletes entire posts!! arrrgh! Be back....

I feel your pain, literally sand your frustration.  Hang in there, I see relief in your future.  Good luck.

Appreciate your comments, I hope you won't give up... Best to you as well.  If you want to,  keep me posted I'd like to know how you are doing.  Best to you

Hi! Been a while since I've seen anything from anybody! I was visiting with annabel...forgot the rest! But I haven't heard anything from anyone! I don't know what happened to everyone so here I am! Wondered how you are doing...having my stimulator removed next week with anothe surgery L2~3. Neurosurgeon showed me on CT where there is a nerve being "crushed"...not sure the word! Anyway I look forward to hearing from you & how you are doing!! Take care!!

 

debby88905,

You are right. We all just dropped oit of sight.

I postponed my knee replacement. Just too much going on to be out of commission for months. Im also terrified of the pain.

Seeing the back doc (pain management) on Tuesday. For what I dont know.

It just seems as if Ive lost all direction.

For me, there is not a solution. I've had three different surgeons tell me my back is too far gone for surgery. My knees can be replaced, but I'll still have the back issue, so what's the point? I'll still be in pain.

Just hit a low point. Hope I can get this figured out.

Ken~First of all, I DO understand, when I am in the pain that is indescribable, I don't want, and really am not able to write or talk to most anyone. .......Have you gotten 2nd, 3rd, or 4th opinions about your back? I am going in on 24th, this coming Friday for yet another surgery  on my back. Was diagnosed initially with CRPS 2 which I believe is what is referring to nerve issues the "2". That's when the Spinal Cord Stimulator came in to the picture.  FAILURE! As you may recall...   Now, after an appointment with my original Dr.,a Neurosurgeon I am told it is a nerve issue, a disc at L2~3 is "crushing" (?) a nerve and the reason for this pain.  All I can call this pain is EVIL, it is straight from hell.  Apologies for sounding graphic but I feel I am putting it mildly.  Your fear of pain is completely understandable. 

 I will try to get back here before I go to the hospital.  Meantime I am sending good thoughts and I am certain you will figure this out, what to do and taking care  of these issues one at a time.  Good to hear from you, I was beginning to wonder if I'd offended someone!! But quite sure I hadn't!! Hope you'll stay well & talk to you next time!  Take care, we belong to the same "club" so to speak so I do understand how these feelings are    Hope to see you soon! 

debby88905,

The appointment yesterday with my pain management Doctor did not go well at all.

I previously responded to a survey requested from his office concerning a previous appointment.

Well... as soon as he entered the room he confronted me on my supposedly confidential survey. This survey specifically states that it is confidential, and I only reported the truth. He could not deny I reported the office visit accurately.

I did use the same words as he describing my spine. ( The first letter is S, the last letter is T) As this bresponse page specifically states, it is for improvement of the patient experiance. The doctor said " I cant believe you stated I used a four letter word, and put it on social media"

What social media? This form states my opinions are private, or I wouldnt have used your words if I had the slightest idea this was a public forum.

My suggestion is to temper your speech everywhere unless you want it repeated.

Then he rambled on about the tests he put me through, and the care he has given me. Well, he only requested one sleep study, and I did the rest. But..... Thank you doctor for doing your job! That's more than I ever recieved.

The office visit deteriorated further from there. The end result was I quit him.

That's the only time in my 60 years of life that a Doctor has let his personal opinions influence his quality of care.

We do agree we do not like one another. That should not effect the medical care he provides for me.

In closing, thank you for letting me vent.

Anypne else have a similar experience with a Doctor? Do to the difficulty in finding another pain management clinic, I bet these are few and far between. I would rather be in intense pain that again.

Ken23428

debby88905,

Blessings, and the best on you pending surgery.

Please keep us posted!

ken2428

Sorry to hear how you were treated.  My pain mgmt. Dr. went to another practice.  The original office where I saw here closed down their pain mgmt.  Then the surgeon of record for my 3 surgeries abruptly closed down the whole office and left the area.  I now have no surgeon to go back to.  I saw my old pain mgmt. doc in her new office office.  Ordered a new MRI.  Go back, with hubby, to get results.  Now, thought we had a rapour, since we worked together for 3 years, told me point blank, “there is nothing more I can do for you,”. I almost fell off the table.  She was stand offish to say the least.  A little condensending to me saying no more injections, look into a pain pump.  To which I said, “absolutely not, no one is going to put anything else in my spine and I refuse to be a guinea pig anymore.”  I left there totally disgusted.  For me this left a bad taste in my mouth towards the docs and pain mgmt. I my area.  So I know how you feel about the treatment you feel.  I hope you find another pain mgmt. doc to help you.  Wish you luck with a good outcome for knee surgery.  Hang in there.

Wow, sounds like you’ve both had a lot going on. Me too but it’s been on the personal side of things initially. 

My wife and partner of 8+ years announced 2 weeks ago that she was unsure if she wanted to remain married to me. Then within a week went to I don’t love you and haven’t since 2011. Before both our original commitment ceremony and our marriage in 2017. 

So I’ve been reeling from that and then 3 days ago I tripped while leaving a friends house. I felt my shoulder go very far back, actually felt my shoulder down to my shoulder blade dislocate. It went back into place but I ended up in the Er in unbearable pain. I’ve been injured many times and broken bones and refused to see a dr for no less than 3 days later. I knew this was different. 

We left that friends house and when I got where I’ve been staying since my wife’s announcement, I couldn’t lift my arm at all. 

X-rays show no fracture but do show where I dislocated it. I drove to be with my family and saw an ortho here yesterday. He ordered an mri which is scheduled for Monday morning. He said he suspects rotator cuff or something else but I should find out the damage next week. 

Things seem to have gone from bad to worse. I had been doing extremely well with pain control with the pump. Even brought myself down to 15mg of methadone and lower on the other oral meds too. I was feeling pretty good. Now all of this mess .....

I’m so sorry to hear that you’ve both had such a rough week too. D, don’t dismiss the pump even if they can’t surgically fix the problem, it could still provide you with a much more comfortable life. Ken, go to Austin. There’s a dr there who is fantastic and super down to earth. He’s not perfect but has been a God-send for me. I hope your both doing ok tonight. Have a good weekend. I’m going spend time with sisters and all 11 nieces and nephews tomorrow. Can’t swim with a bum shoulder now but I can still get in the water and splash around at least. Sending you both my ❤️

Oh, that's the least of it. I ruined my relationship with my PM doctor ( by my alligator mouth) and requested the pain pump. Im afraid do to our rather unpleasant discussion he is going to release me and put on my records that Im a difficult patient.

That day I was.

I went to see a surgeon he reccomended. After a two hour wait I was dismissed with a" sorry, your back is too far gone for surgery". That was the extent of the visit. I also have had my knee surgery delayed due to a terminal illness of a close friend, so Im pretty much frustrated.

As a result of my comments to my PM Im sure he will "fire" me from his practice. These days once that happens you are pretty much on your own. No other PM doctor will prescribe you opiates, or see you for anything.

Unfortunately I did this completly out of nature. Im pretty much a compliance guy. I dont even speed, if I drive.

Im sorry for the issues with your spouse, but we have all been there. It hurts like nothing you have felt before. In time, you will overcome. Be thankful this is early in the marriage. My first one lasted only 2 months, but took two years to get over.

Thank you for the advice on the doctor in Austin. My brother has lived there for 40 years and will not leave. There definitely is a nice vibe around the town.

Im at a loss on how to procede. At the least the doctor is owed an apology, not to get back in his good graces. I was just wrong. He may not do things the way I would, but I see his concern.

Anyway, Im glad your back is better.

I hope someone will take this awful Spine Stimulator out and give me a trial with the morphine pump.

Best wishes, and stay in touch.

Ken

I am so sorry this happened, but I must say, sadly that I am not surprised.  A number of doctors have the attitude they are doing us some big favor or should be honored by their presence. The recent "pain management" dr. I met with, the one who put in the SCS said to me on the first visit "Well, I have an important meeting at noon and I canNOT be late"  That was right after saying "Hi nice to meet you" Well I wish I'd thought to sat "What do you think this is to me?" As if my being there was irrelevant, just a stop by & say "Hey how's it going?"

Hopefully you are in a large enough city where there are more choices. I called my insurance provider to ask a few questions and let them know what was going on...they were ready with Pain Management Specialists names! I thought that was pretty cool, just a thought and one you might want to check into....  I just want to see you (& everyone) get the help needed, and get a quality of life!!!  Merely existing has left me feeling all too often like I'm merely taking up space, and anyone with chronic pain KNOWS that feeling.  I'm happy to see you are still on the fight! Very happy...I do get concerned about those few I connect with!!  In my next comment re; my surgery you'll know why I haven't been here!  Take care ken,  All my best  to you! Keep us posted!!  Deb

My surgery 24 Aug., this past Friday has seemingly taken care of the issue at hand!! The one that has given me the most painso far.  I say seemingly because as you know it's so hard to believe this procedure for whatever issue has a lasting "cure"!!  I remained cautiously optimistic  entirely pre~surgery! Just home from hospital since Monday night, so back to rest for now.  So that's what's up with me for now...All my best~~~  Regards, Debby   PS Iwill be hoping to hear from you, hopeful that you have better news

My best to you on your recovery. After my incident with my pain management Dr, I just couldnt go through with the knee replacement.

He stated I could have additional medication for the knee surgery for to or three weeks. Although he refused to put in writing. I just don't trust him. Since I wanted a trial on a morphine pump, and his practice doesn't do them he would offer refills on my meds and referrals to PM practices that perform them.

Later, after his tirade, I decided I will not go back to that practice, come hell or high water.

So far, no referrals or any communication. I assume he feels the same as me. We mutually dont want to be in a Doctor/ patient relationship.

I hope you are right. This could turn into a big issue. If he reports that I refused to cooperate with his medication instructions it may jeopardize my disability.

Ive contacted my other doctors concerning my issues with this guy.

Next Ill try my attorney and claim he failed to continue care. Ill probably lose, but at least Ill get my point accross.

I dont know. This has my brain so scrambled I dont know if Im coming or going.

Im sorry, this post should be about you and your recovery.

How are you feeling today? I bet its a relief just getting it done. You definately have more courage than I do right now.

Blessings to you and your family. Get well so this is just a bad memory.

Respectfully,

Ken

Ken

I am on my way to rest but felt I need to say that PLEASE!! don't worry about discussing your issues!! No matter what, it's got to be said!!  See you soon!

Thank you. Venting does help a bit. I do feel like I fell into this deep well with no way out.... And the water is rising fast.

Isn't this just the good old American way?

You criticise or comment on a " power figure" and you better to be ready to pay the price!

I can just hear the guillotine getting primed for use.

Just a word to everyone out there. Those little feedback boxes you receive in your email after an office visit? Unless your going to say something nice, just save it. Feeling better is much more important than being truthful now a days.

Respectfully, and may God bless,

Ken

I second what Debby said. I’m here and you are safe. That’s something I’ve been so grateful for when I can vent and let it out. 

How are you Debby? I hope that your  surgery went well and your feeling some relief by now. 

I found out yesterday that I tore my rotator cuff, have a bone spur in my shoulder and when I dislocated it last week, it went back in place in its own....mostly. 

It has made my clavicle and another bone squish in tight to each other.   So surgery is needed to fix that stuff. Date is set for next Friday the  7th of sept. 

I’m nervous about pain management post operatively. It’s been beyond bad at several of my surgeries in the past few years. This is being done in a new hospital without records of what has been effective. Please send a prayer. 

I hope that you will be able to get some answers from your pm Ken. I can only imagine howstressful that situation is to you.  

Sending you both my thoughts and prayers. 

Much Love, 

Anna

Thank you for the support Anna, but unfortunately I have not had any communication with my former PM.

Ive just decided to get off the opiates completely. Although they did help the pain for three years, it's just too much of a burden to continue. I may look into a pain pump with low dose morphine, but that will be the extent of it.

Its going to be tough, I'm sure. I'm completly bed ridden without my meds.

Compared to living in a Police State and continue on the medication is definately worse.

I just wont have my knees replaced and live with it. I can get a wheelchair at a garage sale. There is no need for surgery or any other measures. Ive subscribed to cable, Netflix and Amazon prime, so my mind is occupied. I have practiced doing laundry, basic chores and bathing, so I can survive at least temporarily. We have free grocery delivery, so I can eat. I have become estranged from my wife and children so that's not an issue either.

Im sure once the withdrawals are over I will be fine. With limited to no physical activity, I think I can manage the pain. I will have too, as I am resigned to this fate.

Best wishes to all, and I pray your outcome will be much better.

I have lost the will to continue this fight.

Blessings to all

Ken

Annab. Sorry I missed that correction.

I am SO frustrated! This is my 4th rerply which has disappeared!!  So, straight to the point!! My major issues, the one that I had the  surgery for...SUCCESS!!  Please know I completely understand your nervousness, & I do believe all will go well!  I'm absolutely sending prayers, 

& that whatever Divine powers are watching will guide your surgeon's hands.  I hope that as soon as you are up to it, I'm looking forward to hearing how you are and how well things went!  I'll go into detail about my procedure later, it was interesting! I'll be signing off now before I lose another post!! All my best to you! Look forward to hearing from you!   Love to you, Debby