Spinal Cord Stimulator

Dunk66,

Yes, I had my battery moved as it was sticking out of my back had it placed in my abdomen and it's now sticking out again had a steroid injection and I felt like I was electrocuted so I called Drs office and rep and they tried to say that there is no electricity going to unit if it's off bs I called the company and it does still have the current going through, I'm getting vmine out on December ,8,th and having a MRI with contrast to see what is going on with everything as a cat scan can't tell it inconclusive as my dr said

I will keep you posted on. The surgery and MRI

Good luck to your wife as I know how frustrating it can be

Finally getting answers after bring electrocuted to many times and was on the floor in so much pain using a cane to get around December v8th cant come quick enough

Best wishes to your wife and I'll keep you updated

Cynthia (Cindy,)

I would like to know more about your stimulator. My husbands pushed out of his butt and then the second one did the same 6 months later

Brenda

Brenda, I am in the same boat as your husband. Surgeon and reps confirmed the battery migrated out of the surgical pocket and must be removed. However, they want to install the latest battery in the other butt cheek. I want the entire system removed. It’s only ever worked 20-35% post permanent implant. The trial was over 75%. In trial it’s leads, for permanent its anchored paddles. Which work for most but apparently not me. And I’m not risking going through all of this again to chance it on replacing the paddles for leads. I’ve finally come to a decision and I am calling to set the removal surgery tomorrow. I do also have a host of issues I can not get resolved until I am able to have an MRI again. My unit is not compatible. I have NEVRO hf10. What is your husband planning to do about his second battery migrating yet again? I know it’s crazy frustrating~wish y’all the best of luck! Mikel

Hey there,

I too had an implant that did not work well. I had the Boston Scientific Paddle lead implant. It was placed in April of last year. From implantation on, the pain was unbearable. I have a spinal cord deformity where it rotates through my thoracic spine and because the nerves are not in the proper place, the implant ended up doing nerve damage. So I had it removed in January and its a little better but I'm still in a lot more pain than I was in this time last year. And I was in enough pain then to need the stimulator to help. So I live at about an 8 most days. 

Did you have questions?

I just scheduled to undergo my last option which is an Intrathecal Pain Pump. That's set for May 16th. Hopefully things get better. 

It would make me feel better if I could help anyone else or at least be a support. 

 

That's sounds nightmarish! I feel for you! I understand your pain. If I could help anyone I would... but just relaying my inability to conform to the stimulator won't mean it won't work for someone else. It sounds like we all don't have the exact symptoms. I'm just glad that I didn't let them pressure me into the implant.

Do you get any relief from different positions (sitting, standing, laying, etc.)? I only get relief when in a recliner. It has now become my bed... for the last 13 months now. Can't lay on my side, which was my favorite position for 75 years! So that means I can't sleep in a bed. I'm looking into an adjustable bed, like a hospital bed. Have you had any experience or do you know of anyone that has, and is it a positive for them? My absolute worst position is in a car seat! As soon as I sit in a car seat, my feet instantly start getting painful and goes numb. I guess it's the angle of the spine. Can't make very long car trips now 😭.

Over heard recently of an implanted morphine pump. Since it's implanted so near the pain site, it requires a small dosage. Have you heard of that?

Well, Unfortunately I have the deformity in my thoracic but I have several other arthritic, degenerative and structural issues with the other 2 levels as well. I periodically get the pain and burning in my legs, its mostly in my upper legs and hips so far. I think its T-2 that is pressing into the spinal canal as well so that makes my arms go numb all the time. The worst of the pain is in my upper back. Its constant and unrelenting. I'm only 35 and I really just want to be able to work and have evenings to spend with my wife that aren't involving me sitting with ice and heat or feeling bad.  I never pictured it would be like this at 35. Oh well.

I have heard of the "morphine pump". Its an Intrathecal Pain Pump. I am allergic to morphine itself but they can use many different meds in them now. This is what I am going to have implanted in 2.5 weeks. I'm trying to be hopeful but not to get my hopes up too high. I need to be able to be ok whether it works or not.  The pain pump isn't an option for everyone but many who I've talked to and read about have had life changing experiences with it. The hard part for someone suffering with thoracic pain is the higher up the catheter is placed in the T-spine, the greater the chance of having breathing difficulty because the meds can depress your respiratory system. So they have to take things very slowly to make sure that doesn't happen. 

Because of the many issues at many levels, there really isn't any comfortable position for me. Standing makes my upper back feel like I''m being scorched and stabbed, Or like I'm on an electric fence or jellyfish, sitting makes my low back hurt, laying makes everything hurt after a few hours. I get migraines because when my upper back is so tight, the muscle tension just works its way up my neck and it all stays rigid. 

You might not think that telling your story helps anyone, but it does. It lets people know that they are not alone. It shows someone that we are all fighting this together and are here to encourage each other when it feels like things are collapsing in on us. I'm here if you need a shoulder or if anything that I know from my experience can help. I hope you have a better day. Just don't give up. Keep fighting to feel better. There is someone who will listen. 

I did an experiment, I started taking CBD oil. It was a pure kind with very low THC levels. Its completely legal and I think it helped some with the nerve pain. I've noticed more how much it had been doing since I ran out. The high quality kinds are a bit more pricey though. Medterra is the kind I got. One dropper in the morning and absolutely no fog or high. Just something to consider. CBD is different than hemp though. Don't get them confused. CBD is what you should look for to help with pain. Hemp is used in many products for skin health and diet but does not have the proper makeup to be very beneficial for pain. 

Worth a try right? Thank you! 

I have been researching everything recently!! And yes, the morphine pump is an option. I also saw that a few other meds could be injected into the "balloon" holding the meds.  The studies I read about on the morphine pump say that about 2~5 mgs. is released, rather than taking many, many more milligrams in pill form.  My only completely, or close to it pain~free is horizontal, on sofa, in bed...Other wise a recliner.  The first 30 seconds after standing is when the excruciating pain begins.  What an existence we have, eh?!!  I'm so close to requesting a pump so that I can live my life! I amnot ready to throw in the towel....  I don't see being a prisoner in my own home much of a life....  And I do believe the bottom line here with these SCStimulators all comes down to money for most docs.  It certainly hasn't been in my best interest.  Just a week in my shoes is what I'd like these Drs. to experience.... Best to you....  

Hi just started my second bottle of CBD oil from Medterra.    First bottle was 500mg.  Took it twice a day.  Felt not strong enough.  Now taking 1000 mg bottle.  Taking 1,500mg twice a day.  So far no measurable pain relief.  I might just be that small minority that needs a dosage  in the ozone.  Lol

I hope once I finish this bottle relief will come.  Also looking into the CBD cream in conjunction with the oil.  I did try the hemp oil.  Still trying to figure out the taste.  Looks like olive oil, smells like grass, tastes like oregano.  Too pungent for me p,ys you need to use 15 drops under the tongue and hold for a bit.  Gag city for sure.  The CBD oil is clear and no taste that I can discern.

wish you luck with your oil. Keep me posted. This is my last hurrah for some kind of pain reduction.

Dee

Good luck.

Hey Dee,

I hope it does provide you some relief. I cant say that I felt any difference until I had stopped taking it and then I could tell it had actually helped. 

I know all about feeling like its your last hope. That's what I'm dealing with too. This pain pump is my last hope for being able to keep working. I am driven to keep working. My dad has had to go on disability because he hurt his back while working as a paramedic. He hurt his back and a few years later had a back surgery and then he had a hip replacement which got infected. That resulted in a total of 29 surgeries on the right hip, a heart attack and going legally blind from one of the antibiotics. One surgery he had to get 11 units of blood because a vein had not been cauterized and he bled into his hip all night before they noticed it the next morning. 

He's been through the ringer and Its broken my heart to see this invincible man who saved lives every day go to a man who can no longer stand up.  I am terrified that if I stop, I'll end up the same way. So I push myself and I don't really cut myself much slack. I think I've ended up causing myself more problems but I'm still here and fighting. 

We are capable of so much as humans and all of you in here inspire me to not give up. I'm only 35 and my prognosis is pretty bad considering I have needed a total knee replacement too for about 5 years now plus the strangely severe arthritis I've developed throughout my body. 

Just don't give up. Medicine is constantly evolving and new treatments and new possibilities arise each day. There is not always an easy answer but there is always hope. 

My love and best wishes to each of you suffering today. I've had several 10 days lately. I know it sucks. Hope yall have a great weekend and find something worth smiling about or laughing is even better. Take care 

Hey Brenda,

I will try to make some time to call you soon. I've been busy at work and in too much pain at home to do much of anything. I'm sorry but I will reach out when I have a chance. Thanks

Sorry you are going thru all this.  Pain sucks plain and simple.  I was offered to do the pain pump a month ago by pain mgmt.  this is because there is nothing else THEY can do.  Grrrr.  My response...no, no, no do not want anything else in my body.  I have had enough monkeying around my spine.  Only so much luck one person can have in this area.  

Going to to try acupuncture soon too.  I still try to do stuff.  Not much though as when the pain gets so bad, thatbI cannot walk, I stop.  There is pain one can push through and then there is pain that owns you.  LOL. Good luck.

Dee

Bill44436,

Make sure you know if it's helping not just a little bit but like 30-50 % cause I thought mine was doing great until I started getting caught on everything and I couldn't tell if it was working or not, so they kind of said let's do it, and I told them that the trial seems so different than the permeant one, just make sure it's working right for your pain as I'm getting mine taking out on the 8th of December and than back to square one with the fusion, doctor thinks it's my fusion so we will find out soon once I have a MRI with contrast to see what's going on back there, it's been 20 years and I think I have to have a few more levels done as the pain is unbearable and I'm on a cane with so much pain I can hardly walk and sleep is out of the question since 10/27 I'm lucky if I get 2.5 hours if that of sleep

Take care and make sure you are doing the right thing

Take care keep us posted

As I will do the same

Looking for pain free days someday

Cynthia (Cindy)

Cindy

I pray that you have pain free days in the near future

God Bless you

Paul

Paulbklyn,

I cannot wait til the 8th of December and MRI so I know what I have in store for me, and yes the Bible did help as I was starting to get a little crazy wanting it to end but I'm ok now I'm here for a reason and I will be the voice for anyone who needs me I've been through some really tough times

Take care and I will keep everyone posted on what is found

God bless

And hopefully pain free days ahead

Cynthia (Cindy)

Hi have just read ur post

I havnt been on any forums but reading this makes me realise there are other people put yhere that are in the same boat as me.

Have u had any luck since ur post x

My advice? Even a year later would be Proceed with extreme caution! My trial was great! I was so excited that I went with the permanent implant, & I truly feel, actually I know that this is a completely different unit.. Although the programmers keep saying, "Oh no...it is the very same one as the trial".   I distinctly recall coming out of recovery and a representative from the company saying that there was a different unit with an approximate 10 year battery rather than the 3 year.  Made sense to me to have a 10 year battery.  Being so happy to have found what I believed to be a great help to me in addressing my pain.  I did not stop & think it through...& as it has been said a million times, "hindsight is 20/20".  

I have much more I could add, but I hope you have found some relief. I'd really like to know if you are still active here. Like I said I notice the post is from a year ago.  Best to you, debby

Unless you are in severe torment I would say No.. You may have new pain afterwards and new problems you will have to live with and no doctor

who wants to deal with you....just my l thoughts...

I know something went wrong. I believe the surgeon put it in wrong. From 3/2/2016 to 6/2/2n16 it was taken out & to this day I'm still in excruciating pain & get bruises everywhere the stimulator was put in & down my spine. A neurosurgeon told me the damage is done nothing can be done. But wouldn't put it in my chart because he didn't want to get involved in case I wanted to pursue a lawsuit. And I did!!! But no Dr would admit it because they don't want to be involved. I'm in worse shape then before the SCS was put in n3. Every attorney I spoke with said my case was to complicated, not an open & close case so they turned me down. Even they admitted I had a case but didn't want to do all of the work that needed to be done. I said so if I died you would have taken my case? They said yes. So if I were dead, I'd be a millionaire. Nice to know how attorneys think. The be 2yr statute has passed & I'm still suffering. I have been no life. But can't the attorney general is involved, hopefully the surgeon and Boston Scientific will get highly cc fined!!!! Doesn't do me any good, I CANT EVEN DRIVE OR VISIT MY GRANDCHILDREN AND FAMILY

I believe you are right. It's sad be drs surgery on patient's go wrong & they get away Scott free. I've contacted the Attorney General, I have a case open against the surgeon. Hopefully he'll pay one way or the other. He admitted to me he placed it wrong in my back. Was willing to put a different one in and not charge my insurance for it. If that isn't be admitting he screwed up nothing does. My son was with me but it's his word against ours. He even shredded my handwritten medical records with everything he said to me. There are truly GREAT neurosurgeons, I had one that sure didn't know what he was doing. He messed up on 3 other patients. Of course my pain mgnt cc Dr needless to say doesn't use him but anymore. He found an excellent one. I happened to be the 1st guinea pig he put a stimulator in. Lol. I'm in horrible pain but at least I know GOD is taking care of me. God Bless

Pam... That's awful! You bring tears to my eyes ( and I'm a man!). My condition is not as bad as yours, but I can't plan anything ahead. Each day is a different life. Right now I may feel like driving to our sons house, but it needs planning, so if I would plan for next Sunday , when that day comes I'm completely out of condition that day (which also puts me out of the mood).... So I don't go! Really frustrating... Like you said... It's not a life!

Does any medication work for you!

Hi Pamela, Thanks so much for the reply! I absolutely know the pain you are talking about, I have an existence & no real quality of life either! I have a failed SCS that's been in since 24 May, '17.  I have an appt. with the Dr. who put in my trial & permanent.  II find it "interesting" how the trial was so wonderful and this permanent is an utter failure! I am pretty sure about what happened with this....  Anyway I will be telling this dr. I want it out.  I will stand my ground this time rather than being rushed out & told to have it re~programmed!  I've had re~programming done eleven times since the permanent! 

I am so sorry that you aren't able to do the things you mentioned, it's so hard to merely exist & have no quality of life.  My only basic "pain~free" position is horizontal! Hard to get out & around on a bed or couch! or even a recliner!  The main way I get through is with humor, otherwise I fall back into the vicious cycle of pain to depression to pain & more depression, never ending. So I've done my best to use my humor.

These attorneys are extremely difficult to get anything done..."too complicated", etc...  Tried it with another situation on someone else, even the Dr, wrote in his own handwriting that "This man has suffered immense difficulty and is a perfect candidate for legal action"  Still, no attorney! Would not touch it!  

Hope to hear back from you with any updates or even just say hello. Thanks again for the reply!

Take care and sending you good thoughts!  Debby

Hello, Hello, Hello! I hope I made you smile even for a short while. I hope I can made you smile, even for a few seconds. I truly believe if these Drs that put it in wrong or the SCS which may have been defective or defective in your case would have killed us, that's the only way we would have had a case. My neurologist wrote a letter saying the stimulator damaged my nerves & will be for life. I still go to the pain mgnt Dr who pushed me to get it. He sees the bruises on my spine & everywhere the SCS was put in, yet doesn't say anything. Went last month & he said you may have an allergic reaction to the metal leads from the stimulator. I said WHAT? I had it put in 3/2/16 & taken out 6/2/16 so why am I still getting these bruises & why does my spine feel like it's ripping in half inside of me? He had no answers. I got MRI's w/would contrast 11/17 & it shows I still have swelling & bruising everywhere it was placed especially where the lacamectomy was done. You're right, TELL HIM TO TAKE IT OUT OR YOURE GOING TO SUE HIM. I filed a complaint w/the Attorney General. I'll give you the address when I can find it so you can put a complaint in against the surgeon who put that awful SCS in us in us. Talk to you very soon. God Bless & Good Luck

Hey there!! Of course a smile here, hope it works both ways!!  Plenty for us to talk about here, on both sides & plenty of  other stuff....so anyway, I have what I do hope is some good news on my part.  Involving an appointment with my neurosurgeon.  He did all of my surgeries, & I have an appt. for 5 June. This will follow the one I have on 17th of this month...the one who put in my SCS, which is unfortunately basically a huge failure. A lot to say involving this whole thing, sooo, I will be writing back with more details!

With even the smallest bit of "luck" I do hope there are a few moments in your days that are enjoyable to a degree!  I'll be back here to talk to you more on this SCS  & all that goes with this! I cannot believe the DR. is actually saying this to you!! Where do they come up with this?!!! 

Be back soon to continue this, thanks again for the smiles!! Take care!!  Best to you, Debby  

Just wrote a long message, lost power and it's gone! Suffice to say I am going to see the dr that put this SCS in & ask him to remove it.  I've been dissatisfied with his "work" and will be seeing my neurosurgeon in about a month to get a referral to another pain management dr.  The trial SCS worked so well & I had virtually very little pain during that trial week.  I was told about another model with a 10 year battery life which obviously made sense to me rather than go in after 3 years to replace battery. So instead of thinking "if it ain't broke, don't fix it"! I opted for the other & getting no relief being in for a year now. My only comfortable position is horizontal...lay in bed or a recliner. I dread getting out of bed when I wake up since I know what's coming! I just do my best to approach the days with humor mainly, but I know this is NOT going to go away or improve without some sort of help, so I see my neurosurgeon in about a month for hopefully a new referral.  So I do understand the total frustration you talked about, not being able to drive to see your grandchildren and basic everyday things we used to do. Or at least I was able to stand up or take a walk..whatever it may be I would like to do at a tolerable level!

Sending good thoughts to you and hope something might be done to help you.. Thanks again, hope to hear how you are doing, that there is some improvement for you....Take care, Debby .