Spinal Cord Stimulator

Sorry to hear about your situation. I am trying to get an appt with a pain management Dr at Rush named Lubenow. Do you have any experience with him ?

Stay away from him he is the partner of my doctor I'm sueing Vincent traynils im crippled for life

Sorry to hear that you still have pain after implant of the Nevro Senza SCS.

It would be helpful to know if this was the trial or the permanent implant.  If permanent, did you have the same experience during the trial.  I guess not because you wouldn't have had it installed permanently.

Do you plan to stick with it or have it removed?  I have not read one positive comment for the Nevro SCS and am having second thoughts about having it installed even for a trail.  Please let me know what the doctor has to say about it.

Thank you for your kind words.

As of now I'm sticking with it.  Have a doctors appt

tomorrow, see what he says

I wish you all the best

I'm really pleased to hear someone with a positive response to SCS implants. Would you mind letting me know the name of your implant as I now know there are several types?

Regards Reddave

You are the first person I have heard from that has had a good experience with your SCS.  This is very encouraging because I have had all the nerve blocks, infusions and medications available, and none of them have stopped the pain.

Like Reddave 8, I would really appreciate it if you could tell me the maker's name of your SCS.

There is hope, thank you.

Please make sure this is what you really want to try!! Once you do it there is no changing your mind!! I have had two of these

Thank you fred92666.  A SCS is not what I really want at all and I have been putting it off for years in hopes that other treatments would reduce the pain.  None have worked and the SCS is the only option left open to me, so says my pain management doctor.

Which two did you have, what problems did you experience with each, and what do you do now to manage your pain.  Your response would be very helpful and much appreciated!

I had two Medtronic stims put in!! Both have been removed and now I have three more herniated discs and severe upper and lower spinal stenosis!! They have made my life much more miserable!! The sad part is that these stims are not proven in any way and if something goes wrong they have no idea what injuries or damage it can cause!! Or how to treat the problems they cause!! If I could start over I would not make the choice I was pretty much forced to make!! Please make sure you read everything you can on them!! And take the possable side effects very seriously!! I Am pretty much screwed for life right now because of them!! It is a very seriouse surgery and chance you are going to take!! Let me ask you this-- can YOU afford it to be worse than it is now??? The doctors will tell you "oh that was just him" remember who those doctors are working for (and it's not you) that's were they make there money!! Please just make sure you read up and check what kind o food problems they have caused other patients!!! If I had my way and the power I would shut those company's right down!! I wish you the best and will pray for you!!

Right now they have me on so many pain meds it's not funny!! And they only take a elite edge off the pain!

Thank you for your response.  I am very saddened by what has been done to you and hope by some miracle your pain will ease.  Like you, I feel that the doctors are pressuring me to install a SCS.  They do this by holding your medications hostage.  Your experiences only reinforced what my gut has been telling me for years -- SCS is a bad option.

You are absolutely right, I cannot afford to make my pain any worse than it already is.  My ability to do most things, that pain-free people take for granted, is very limited for me.  If the pain got worse because I installed a SCS, I probably would have to stay in bed most of the day.

I don't know what the answer is to help our suffering, or if there even is one.  I will pray we both find something to help us!

 

I agree!! And the pain meds make you miserable to!! And you are right they hold them hostage!!! Told do what they say or no more scripts!! That's medical blackmail 100%!! Good luck and I hope you find answers as well!! We have to keep believing!! We have no choice there!!

Hello, there are so many positive experiences out there regarding the spinal cord stimulator. You have to realize all the "success" stories aren't sitting here on forums, they are out doing normal daily activities. The negative stories are people needing help, or support. So remember don't base your decision on these forums, but on how the trial works for you!

Because it didn't work for you doesn't mean it hasn't been a life altering effect on many! I am now able to walk and do so many things I wasn't able to do since my accident 3 years ago. There are so many success stories out there. You see the negative because all the people on here are the minority, and needing support. As I've said in previous posts... "all the success stories aren't sitting here on forums, but our living a normal life." I think for some the reasoning is having previous back surgeries causes scar tissue. The more scar tissue the less coverage from the scar tissue; which based on all my research is certainly a possible issue. I was lucky because my nerve damage was in my leg, so I had no scar tissue in my back. Giving great coverage directly to the leg. For people having multiple back surgeries the less chance the SCS will work. I feel so bad for people like yourself being left in worse pain then before (I can't imagine) but if you tried to shut down these companies based on your experiences, think of all the potential people losing out on the SCS helping with their pain!?

Hi  I have a Nevro spinal cord stimulator I have had no problems with it at all, I still take some of the pain meds but not half as naby as before. Ialso sleep much better and am able to be more comfortable it is a godsend

I'm sorry and am glad it helped you but there are millions of has not helped!! How do you put these in people without knowing what it can do if it goes wrong!! As far as I'm concerned ic it goes wrong with one person and they can't answer why!! Then they shouldn't be putting in anyone!! One person is one to many!! You do know they have killed people right?? But oh well that was him not you so it's a good thing!! Not trying to be selfish but one life lost is one to many!! You keep reading what they want you to read!!

I want you to know it has ruined my life!! After three years not being able to work in any way that in may I lost my house!! That's what it has done for me!! Glad your good though!! And of the people I have talked to?? Over half have had more problems!! But hey so what put them in anyway!! Cha-Ching is all they are saying!!

Hi,

You are the first person I've read who has the Nevro SCS and am glad that it has given you enough pain relief that you could reduce your meds. Does your doctor think you may be med free at some point?  I agree half a loaf is better than none.

He doesnt know yet  Today was the first day I'm wearing a reduce fentanyl

patch.  Had some pain seems to have worn off as of right now 12 midday

I wish everyone to be pain free

Mal609  I wish you all the luck in the world

Glad to hear that your SCS has given you pain relief and a new lease on life. Could you please share with me the mfg name (Nevro, Boston Scientific?) and were you able to completely stop taking the pain meds?

Great success story, thanks for sharing.

I hope you achieve 100% pain relief and thank you for the kind wishes.  Please let me know after you stabilize how much you were able to reduce your meds by.  It would be very helpful.  Good luck.

I'm sorry it has ruined your life. But your saying it's ruined "millions? " your statistics are so inflated. There aren't even millions here in the states with the SCS, and it has helped more people than not. As mentioned the stats are very skewed because only people having problems are here writing there frustrations; trying desperately to get answers. My SCS stimulator has helped with many things I was unable to do, but having CRPS I'm still having bad flares...in fact I've been in really bad pain for over a week. But I'd rather have some good days thrown into the mix, then nothing at all. My accident has changed my once extreme active lifestyle and successful career to losing everything as- well. My beautiful house, my boat, Snowmobile, my lucrative job. I'm unable to pay my bills now, cuz I can't work. Im needing to get into the doctor because I rolled my ankle badly almost 3 months back, but I can't, because I have no money. My health insurance is a damn car payment, even though I only get a little over $1800 per month (disability). They don't care and added in my salary up until May, when I made good money, but don't even get enough to pay for all monthly expensive. And this health insurance plan is horrible. So you aren't the only one dealing with a crappy hand dealt to ya. But life is about taking chances and you don't know if your going to be in the small group of failed SCS, but for me it was out of desperation. Like I said, I still endure a lot of pain, but I'm not gonna say that these devices shouldn't be used...where these help so many people each and every day!

I have the Boston Scientific Spectra. Because I have CRPS type 2, I still get really bad flares; which is kinda expected. These stims aren't a 100% cure- all, but a tool to help with the pain. I Still do need to take pain meds, but it's so wonderful to be able to walk, and do things I wasn't able to do. Also I'm thinking the crazy weather changes are causing a lot of my pain lately. During the summer things were fantastic. I sustained badly broken bones, nerve, tendon, muscle, etc. Damage, so I think as mentioned the atmospheric changes are causing these issues?

How many other lives have been ruined?? As I said glad it helped you!! But as I said also if it can make people way worse and even dead than it should not be used!! They need way more research on these!! And I wonder how good you will be two or three years from know when they end up having a major recall like so many other devises they put in people!! My point is that they are putting them in without enough research or proof that they work short and long term!! They need to explain more to the patient about the consequences!! Right now they are just putting them in everyone they can!! My doctor praised them!! Pushed it on me to the point I was told if I didn't put it in they would stop giving me pain meds!! They are greedy pieces of crap!!

Thank you for the information about your BS Spectra and the amount of pain meds you, unfortunately, still need to take.  The information is very helpful when making a life changing decision about installing a SCS.  If it will help reduce the pain, then there really is no reason not to try it.  I think you can try out all SCS for 3-5 days before making a permanent decision. Did you do a trial of the Spectra before permanent implant?

I saw your reply to fred and am very sorry that this accident had such devastating effects on both your health and financial situation.  But your attitude is amazing and an inspiration.  Hang in there, the body is a wonderful machine and maybe with time your CRPS will deminish.

You need to tone it down a notch or two. I don't think you understand that glxpassat is trying to help you.

They've have supported data for over 20 years. The hard thing is the scar tissue that builds up causing interference with the leads. It is unfourtunante that for some pertinent information wasn't given. I also know for a lot it's lucrative money, and sadly some doctors push them on people that probably shouldn't be implanted. With anything there are probable long-term symptoms. After I had my accident I had emergency surgery...the orthopedic doc told me the biggest problem with the I'M nail is long term knee pain (they cut through the pettela tendon to get to the top of the tibia in order to hammer it into the bone) it was either that surgery, or traction for 6 months in a hospital. So of course I took the surgery route. And in fact I have horrible knee pain. I also was told about surgery complications which 6 days after I ended up with a life threatening infection, and back in the hospital. So there are always risks and for me through all the research decided to take the risks, because how bad my pain was. I will only hope and pray this works long term, but for the time- being all I can do is be optimistic, and take one- day- at- a- time.

From what I understand the insurance companies require a trial run before doing the implant. Also don't be surprised but they will also require a mental evaluation. The biggest thing I've noted on peoples unsuccessful implants, is how many back surgeries you've had? The more surgeries the more scar tissue, which will effect the way good coverage is dispersed. For me I'd never had back surgery, thus no scar tissue in my back. I also believe having a really good rep through the company (you will be dealing with them anytime you need re- programmed and such) some reps can be awful and really make or break what could be a good experience. So ask around and check out the companies local SCS rep. And thank you for the kind wwords.I try to be optimistic about my situation. It truly blows with everything...pain, finances, house, job. But I know there is something out there for me, and I'm greatful to be alive (I shouldnt be). I've e got my faith and family. That keeps me going. Please keep me posted in your decision, and if you have any questions, feel free to ask me anything?

Glxpassat

I also ended up with a life threatening infection after my fusion in 1998, staphylococcus which is now mrsa in my body have to get tested for it every time I get a procedure done, I had the pic line into my heart for 6 weeks and had a big open wound on my back for just as long until they put me back under to close it and get all the dead tissue out, had to neck injections again pain was so bad going numb from neck to toes with this stupid stimulator they think I still want to play around with it and I said no take this thing out its pushing out again in my abdomen I'm having severe pain fr the leads dropping to my knees and sharp stabbing pains where the battery is, like I want to continue on with this the are nuts my body my decision. Nomore, so tired of no sleep waking up in souch pain you cry, and they don't care.

Hope are feeling better

Take care

Cindy

Fred

I totally agree with you, 2 years but nothing but another surgery and pushing out again stabbing pains n the leads dropping me to my knees, and they want me to keep it in?! My body my decision take it out

Cindy

Yikes! I'm so glad they got mine under control quickly. I was in the hospital for 3 days taking meds via a drop line, and after that I was able to take them orally. It was an agonizing experience, but catching it when they did made things much simpler for me. Sounds like you went through the ringer with yours😓

I tried the NERVO and unfortunately I was one in the trial that go no relief at all.  Today I talked with my pain mgmt. Dr.  I hold no one responsible, especially those who do the NERVO.  They tried every combo that the product for me.  As my Dr. Put it each of these devices affect a different portion of nerves that run to and from the spine.  I am now waiting on approval for the BURST trial from St. Judes.  It will go in a different area more targeting the brain instead of nerve endings.  It is all trial and error.  But millions have been helped by any one of these devices.  For those who have the NERVO and it is working.  I am happy for them.  Maybe my next trial will benefit me.

Dj1976,

That was going to be the next one for me, but now I know it's the fusion or I need more done to the one I have, unfortunately there is a part in my back that has an indentation where it hurts so bad so I'm thinking that where it's at. I know have to get a cat scan and start all over again.

Cynthia ,(Cindy,)

Good luck with the CAT scan.  Hope your answer is there.

I soooo agree! I only had trial for 2days and almost a year later I still have weakness.and spine muscles tight abdomen still protruded out and no answers except thr trial was not cause it was a coincidence it all started the day of and immediately after procedure. Does the person who implants these tell me what could've happenned. Also procedure was extremely painful kept having to numb me and still very painful. The facts are not getting recorded about true outcomes...

glx....since you have a positive view how about starting a POSITIVE REVIEW forum??  then  we can hear both sides of the story. I completely understand your statement about the "good guys" are out and about!   No complaints.... no questions!  Im on the 2nd leg of the trial. after initial 7 day trial they determined that the sensors were too high {T8}. So 2 days ago the Dr pulled the leads down to the T10 area. My issue is in my feet caused by a condition called Aracnoiditis (I've read about 50 posts on here and havent heard that referenced at all...happy no one has THAT!} The rep cant get the Boston SCS to get into that area, so on Mon I'm going have it removed . No permanent procedure for me.

My Pain Specialist has pushed me to have this and I have refused .

I was taking Opana er but when they took it off the market my Dr. offered to put me on straight Morphine I also take Percocet 10/325 mg. 4 times daily I have constant pain but I refused the morphine .Now my pain Dr is wanting me to have yet another surgery I already had 2 failed Back surgery's If it comes down to him forcing me to have surgery again I will and if I dont he wont prescribe the pain meds I will choose not to have anymore surgerys.The stimulators to me are a mistake I've read to many failures on  them.

I feel your pain. I was on dilaudid for 8 months. I wanted to get off the narcotics so now I take tramadol. He prescribed 3 per day, but my insurance only will let me have 56 per month?!! My pain is in my feet mainly the toes and pad behind them. Feels like I'm standing on a hot concrete sidewalk barefoot, all the time. the trial stimulator hasn't helped at all.

Can't sleep in a bed. Been sleeping in a recliner for last 9 months. Weird, but the recliner gets the pain down to a 2 or 3. Going to look into a hospital type bed that elevates the feet and back. Does that relieve your pain any?

For my feet and leg pain the nerves were damaged during my surgery my Dr prescribes me Lyrica and it really helps at first it dint but he now has me on the highest dosage twice a day and if I miss a dose I can tell it .I tried the recliner but it dint work for me I have to have a therepudeic type mattress and I have to stretch my left leg out to one side I also have to lay on my left side and find the spot where I get the pressure off the disc. Once I find it I'm out .Good luck to you .

that's a plus that SOMETHING works. I tried Lyrica but it had no effect...100mg 3x a day. Expensive here in St Louis. I'm looking into getting a bed like that. What is a good affordable brand to look for?