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Spinal Cord Stimulator Problems
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dawngri posted:
For all of you out there that have had damage caused from the SCS......... I am still suffering 7 months post removal. I have made an Adverse Event Repot to the FDA and it is now complete and online at the FDA MewWatch web site...... For all of you in debilitating pain from this, I urge you to file a report....... This is the only way the physicians will take notice, since the FDA will investigate. Then the docs will find out what goes wrong, causes damage and worsens our conditions. Then they will find a way to help fix the reasons for this, help us heal and prevent such horrors from happening to other people...................

Please send me a note and I will help you file a report, it only takes a few moments online at the MedWatch web site............. ...........Dawn G
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bj1208 responded:
hi dawngri - welcome to the support group -

sorry you had so many problems with it installed and also out of you.

Thanks for updating us and providing the information on the complaint you submitting.

please keep us posted~~
~~ Click on my name or picture and read my story ~~

Take care ~~ God Bless ~~

~~ Joy ~~
 
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kenny63 responded:
Hello Dawngri,
Can you tell me what kind of damage you suffered from the SCS? I have one in my back and it is difficult to determine pain from back injury from SCS stimulator? What kind of post removal symptoms are you experiencing? I thought I might be alone out here. Thanks for your attention and where to go. Thanks
 
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bj1208 replied to kenny63's response:
Hi Kenny63 -

you can GOOGLE: Spinal Cord Stimulator problems - or put in SCS implant adverse event, or SCS implant problems after removal

This should return some items where there are problems with the SCS implant - either while it's still in or problems even after it has been removed.

I had problems with the TRIAL implant - once it was in I left the doctors office in tears and told my father-n-law to JUST GET ME THE F HOME!

It was hurting me so bad - it took care of the pains in my legs but made the pains in my back hurt 3 times as much. I got home and curled up in fetal position and just cried and cried - the sales rep (he was there helping with the implant) called me 4 hours after to see how I was doing - he had me try a bunch of different dials for the sensation and every time we turned it off I was in great relief of the pains. He told me I was ATYPICAL - I had never heard this term - he said it is a term for those where most treatments that work for others don't work on me. He was right - the next day I went back to the doctor and had the implant trial leads removed. Even with the machine off once they took the leads out I felt a great relief of pressure when they removed the leads out of my back.

So I did have a bad experience with the SCS Trial Implant -

I have a new surgeon that wants to put his special one in - instead of the round leads he has flat panel leads and wants to put this in on the TRIAL PERIOD. He keeps telling me it will help with the leg pains completely. I take Neurontin for my leg pains and that med keeps the pains away so I keep asking him why change that if it is working really well. I kept asking how it would help my lower back pains. he never said anything so I have refused to have it done.

I hope this helps - keep us posted~~
~~ Click on my name or picture and read my story ~~

Take care ~~ God Bless ~~

~~ Joy ~~
 
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dawngri replied to kenny63's response:
Hi Kenny.........You are definitely not alone.......I visit many back pain web sites, and have found hundreds of people with severe problems directly caused by the SCS........



The trial was fabulous. I only experience sever nausea, but kept the stim on low and took reglan. I had 100% pain relief. Oh joy, after years of agony, I found the answer.

The night I came home from the permanent implant I vomited for 12 hrs. Despite telling the anesthesiologist, they gave me nothing for nausea............... Soon the real agony began.........When I had the stim on, even at a very low background frequency, I had stabbing chest pain, it felt like I had a sharp knife stabbing the sides of my chest........my neuropathy pain began to get worse and I started having muscle spasms.....

The spasms were around my chest and lower back, they were extremely intense to the point where I felt I had shaking chills........the tech made adjustments and the doc said my body needed to get used to it............ The spasms worsened, the leg and back pain that I had worsened and the chest pain worsened. This was to the point where I stopped using the SCS altogether. The tech and I went back to the doc again, because I wasn't using the scs at all............the tech suggested a look see, and with the office fluoroscopy, we saw one wire had migrated...............this wire was the reason for the damage to the muscles and the chest pain. .........the doc sent me home and I was to use only the good wire......

Yet, the symptoms continued.......Then my legs began to get weak. With in a few days I had serious trouble walking............ That's when the doc removed it..........this was 45 days after the implant...............

It has been almost 8 months now. My leg strength came back immediately and it took a few months of steroids, muscle relaxers and narcotics to get me through it all........the chest pain is almost gone, but the muscle spasms continue and are extremely painful........it feels like a constant vibration all around my rib cage, sometimes the muscles in my arms, buttocks , legs and abdomen actually jerk..............I take Xanax, which is the only muscle relaxer that works for me.......plus a hot bath or heat packs help. ................if I don't take the Xanax before the muscles start to spasm at a certain degree, I am in a lot of trouble.......and I still need a narc for that pain and the pain I had before the surgery.......... ........... My Neuro surgeon did not do the implant, an anesthesiologist/pain doctor did the surgery..............he says he has never seen anyone have any problems at all. He says I am in the one percent of those that have unexplained poor outcomes..........my NS and my physiatrist say I will improve but it will take a very long time. ............................... .............I have talked with people on other sites that have much worse problems than I do. Some have been dealing with the damage caused for years now. But I do have to say that for many the SCS has been a wonder life saver for them.......but for the rest of us, there are no answers.

Good luck to you Kenny. Let me know what your symptoms are. I had a lumbar SCS. Some that had a cervical SCS have breathing and swallowing problems. ...........Dawn G
 
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dawngri replied to kenny63's response:
Health Central has a huge community dealing with the SCS problems.
 
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dawngri replied to dawngri's response:
Also NeuroTalk is a great place.
 
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aprilrose9 replied to dawngri's response:
Hello!, I have been told, prior to SCS implant, patients should have an MRI. This should be just prior to the surgery, to make sure the vertebral spaces are adequate for the proceedure. A surgeon at a world famous hospital, paralyzed a patient who had inadequate vertebral space for the leads. Was told this by the surgeon who did my SCS implant. I have not had the same horror story problems, I have heard some people discuss. My only issue is: the darn expensive thing just does not help. Wish I had never given it a try. Told it works great for some people. I wonder how severe their pain is, since it seems to make my pain worse with severe pain. Any clues anyone?
 
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stinkenpn replied to aprilrose9's response:
Hi I've had the SCS in for almost two years now. At first worked great. Then something happened when I was shaving my legs, I felt a horrific pain shoot through my mid upper back area, it took my breath away. I called my drs. Office and asked them if there was anyway that the leads could of moved? They said is your SCS still working? I said yes. They told me no. I have never had a problem with upper back pain. I have always dealt with lower and left leg pain. Now I have to add this to my list. I have had 3 back surgeries. Not including the SCS implant. I see my pm doc this week I plan to discuss getting it removed. They didn't implant it a neuro did. I just don't appreciate being lied too. The point of getting it was to get off some of my pain meds also and that never happened. It's so frustrating!!!
 
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dawngri replied to aprilrose9's response:
I have read of many horror stories. Some have been paralyzed, some went on breathing machines............and most have the original pain get worse. There are too many problems, each severe, the same or different with each person. Yet not a single doctor can give any answers. They KNOW there are serious problems with the SCS. ....these issues should be brought up and discussed with us before the surgery....... I had no idea anything like this could happen. I am far worse now than I was before..................... Yet they still implant them, get big money too..........and the companies that make them are getting richer with each one............... This is why I made the report to the FDA........the more that report, the more investigating will happen. ................then a lawyer will take this and get a class action suit going............the damage may last years..... ..................Dawn
 
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kenny63 replied to dawngri's response:
Hello Dawn,
I have never had complete pain relief but it has been managable until Feb. 14th when I came home from work and had a burning, constant pain where I have my stenosis and disc degeneration. This is right mid back with pain coming around to the front of the stomach area. I have constant pain but with the stimulator, it does decrease a bit, but I am now having to take Norco three times a day to manage the pain. I do feel like my right leg is weaker a bit and when I turn the stimulator off I feel like it is still on. I had an anesthesiologist implant it not a neuro. If this continues, I will have it removed, but that requires I travel from Chicago to St. Joe Michigan. I really was please at first, but since reading about others, I don't think I am doing too well. Thank you so much for responding and I do feel less alone. Thank you again. Kenny63
 
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dawngri replied to kenny63's response:
Hi Kenny.........I also had the shooting pains around to the stomach, .....plus electrical sensations going across my skin, from mid back, don the legs. It felt like bugs crawling on my skin........ Having leg weakness is something you really need to pay attention to. If it starts getting worse you need it removed pronto, or they need to see exactly where the leads go. If the leads have not moved at all, get it out if you have progressive leg weakness. You don't want that to become permanent................. With the stim off, you should NOT feel it at all. This is not good, should not be happening. The SCS may not be actually turning off completely. Which could mean a problem with the implant itself and not the leads.......... You are taking more pain medication.........You know if something is not right..........go with your gut instincts... I am sorry to must travel, because it is time consuming, painful and you need to have all your ducks in a row when you are there. Such as the tech and have the doctor prepare to check lead placement.

If all was well and the unit and leads functioning properly, you should not be having any problems at all...............be aggressive, don't wait.

Keep us updated. There are others on the site reading your posts. Dawn G
 
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dawngri replied to stinkenpn's response:
My doctor refused to believe my leads had moved also. When I had the upper back and chest stabbing pains, it was around the bra line area. My tech was good and he insisted on checking. Sure enough one lead had moved significantly. Either types of docs can do the implants. It is a personal preference. I asked mine doc how many he did, and he said hundreds a year. Who knows if he was telling the truth or not. I do know that you should only need adjustments of the programs, no other issues should be happening if the battery is fine and the leads are in good placement. So what does that tell you? The SCS was supposed to make you better, not worse............good Luck Stinkenpn.......keep us updated. Dawn G
 
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stinkenpn replied to dawngri's response:
How do they check if the leads have moved or not? I was asked if the stem was still working then there was no way anything was wrong. I know something happened. The pain drives me crazy. That's my new pain. I also have soreness where the battery pack is. My right leg is giving me trouble now as well. No they don't tell you any of these things before the procedure. Just the basic stuff like infection or what could happen with any other kind of surgery. Not these horror stories. I got a notice in the mail about the batteries burning people while they charge. Again nothing in the manual tells you to not wear certain lotions, etc. I think they are to quick to push these off on us desperate people that have been dealing with pain for years. They give us the SCS as last options because they don't know what else to do. Of course they want money too. I just think it's a shame. Thanks for your reply I didn't think I got through. Good luck to you.
 
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bj1208 replied to stinkenpn's response:
Hi -

usually they can tell the placement of the leads by the fluoroscopic x-ray machine and see where the leads are and if they have moved. Another key factor would be that the SCS was working by reducing pains and then all of a sudden the pains are worse. they should also be able to tell if you have other problems with your spine (i.e., new disc bulges etc).


Hope this helps - call your doc as soon as possible so that they can examine you. keep us posted~~
~~ Click on my name or picture and read my story ~~

Take care ~~ God Bless ~~

~~ Joy ~~


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