I am new to the forum. I stumbled across this community researching lead migration on my Medtronics unit. My unit is supposed to be used to relieve intercostal nerve pain damage. I had a thankfully non-cancerous tumor on my rib cage removed and when the surgeon removed the tumor he severed a bundle of intercostal nerves (nerves that wrap around your rib cage and chest wall). The pain from this is similar to a constant runners cramp (if said runner were being stabbed in the side of their lung with a really long, sharp dagger) that doesn't go away ever. This makes breathing very difficult and laboring. Without pain control I have to breath in short gasps so I sound like a perverted breather on a crank call.

I had my SCS implanted in Oct of 2012 and after the horrendous recovery process I felt strong enough to tackle the long, painful and arduous process of discontinuing my narcotic pain meds. I went through withdrawal for about 3 weeks and I honestly would have preferred being shot in the head rather than go through that again. After 5 months of a rather pain free existence I found myself suffering from gastrointestinal issues - bloating, diarrhea and vomitting - as well as migraine headaches (of which I have never experienced before), side and back pains, all over body itching, cramping and a feeling as if I am having my insides bbq'd. I went to my neuro/pain doc today who had x-rays taken only to show that one of my leads has 'slipped' and dropped. The Dr. said that this is what is causing the burning/stinging electrical pain and itching. The gastro pain is due to the remaining lead's vibration being so close to my stomach and intestine area. The prognosis is to go through surgery again and have the leads removed and repositioned. I am not happy about this but I was wondering if this has happened to anybody else. Please advise.

WELCOME to the forum!
You've certainly come to the right place . You'll get alot of great feedback and support here.....and we'll probably learn from YOU as well

Thanks for your introduction and the description of what you've been thru and are still going thru. You've been through your share of tests and trials, that's for sure.
Regarding the lead slipping, oh yes, been there also. In my case, they actually just pulled the bad lead out and I'm doing just fine with only one lead. Does wonders for covering over the horrible burning neuropathy/RSD in my legs and lower back.

You'll get much more feedback if you start a new thread of your own. That way people will see you easier, rather than being tagged at the end of this thread up here in the top section of the SCS forum. Just exit out of this dialogue and you'll see a 'New Thread' button on the left side of the screen. Tag that, title your thread and copy this post that you just made and hit 'submit'. Then you'll see your thread down below with all the others.
This is such a great forum and I'm glad you found us!

Sometimes new folks have a hard time finding their posts. If this is the case with you, this SCS forum is listed under the "Medication & Treatments" forum in the main menu. You'll see it listed as a 'sub-forum'.

Many MANY have had lead migration issues, so you'll soon realize you are certainly not alone in this!
It'll be great getting to know you!
Just holler if you have any questions or need help in finding your way around.

Rae

I came here hoping to find people that have also had SCS implants - mine was put in Nov 30, 2012 - and see if they're side effects and complaints were the same as mine. I just don't know where or how to post . . .

I have not even done the stim trial yet. My cardiologist says you can't implant one with a pacemaker, which I need to have done. I am concerned about even doing the trial, and feel like my doc is rushing it. I just don't like the idea of electricity from another source running in my spine. He won't even do a pump trial unless I do the SCS trial first. I am even more concerned after reading so many posts where people had complications after it was inserted. I would really rather try the pump because I know what has worked (I've been dealing with this for 11 years now. I had better care in 3 other states, but have nothing but problems since I moved back home. Does anyone have any thoughts on this?

Hi Vaxn8,

If you're being advised by your cardiologist not to go this route I sure can understand your trepidation of going through all that only to eventually have to have it removed (I assume - or just turned off - what's the point of that??).

However, I also want to interject that some folks out here have had absolutely awesome results from the SCS system...I'm one, for sure. I've now had my permanent in for 1 year (this month) and couldn't be happier. Overall I'm experiencing about 90% pain reduction where the pain is neuropathy and about 70% where there is arthritis pain - I'm beyond ecstatic!

Every patient is different - and so is every doctor. I happen to have an amazing pain med doc and she is extremely conservative in her approach. She absolutely will not do the SCS paddle as she had too many patients that had problems with them early in her career. As I've read through the posts out here it has seemed to me that the majority of the 'horror stories' have been folks with the paddle...I hasten to admit I could be completely wrong about that! I have 2 leads with 8 contacts per lead - both on same side of spine but one with a slightly different angle at the end. She did this with the idea that down the road if I have chronic back pain or pain in my other leg - there are already leads in place and we could just simply program them to activate to stimulate other nerve roots.

Anyway, my point being this: Please don't judge whether you go forward with this solely based on those that have had negative experiences - many of us have had amazingly, life-changing positive results. Now, if it's about a pacemaker - I would submit that's a totally different situation and I can't give any advice on that. What does your pain doc say about what the cardiologist is saying?

My pain doc is quite arrogant. He started his own series of clinics and surgical centers. I have signed releases for my EP cardiologist, who happens to also be an engineer and has developed loop recorders for Medtronic (like I have). I saw my cardio on a Thursday afternoon and asked if my pain doc had called yet, he said no. The next AM I saw my pain doc & he was irritated that my cardio hadn't called him back. I know he didn't try Thurs. because mu cardio asked his RN if e had called, so he must have tried Fri. AM before he saw me.

Andy, I appreciate you sharing your experience with the SCS. Another part of the problem, is my blood doesn't clot. Well it eventually does, but it takes 2 hours of infusions of clotting factors. This means it has to be done in a hospital which my pain doc doesn't like (he can't use his surgical center). He wants to use a drug that works in some cases. Luckily, I found a really good hematologist, and he won't approve the use of that drug until I take a challenge dose of it. Basically, they make you bleed, time it, then repeat the cut give the drug and see if it works or not. This will slow down the whole decision-making process, which is what I need. I am a pharmacologist/toxicologist and I don't like how he is rushing me to do it, I need time to think and research it for myself. Re: the pacemaker, my pain doc says he does it all the time. He also uses drugs in his pumps that are not approved my Medtronic (you can request approved drugs though). I trust my cardio more, and he has been around quite awhile, and is very respected. I got lucky to see him as a patient; if I hadn't had the asystoles, I would've had an intern or fellow. He is very interested in whatever is going on with my heart because it is unusual to be out as long as I am. It's one of his areas of research, luckily for me!

I did see the poll results and was surprised to see ~ 80% success rates. If my cardio signs off on it & the heme comes up with a plan to stop the bleeding, it will be a different situation. If I did the trial, and didn't clot, the blood has no place to go in the spinal cord, and the result is paralysis. I'm not working now, and really want to get back in a lab, that's part of what scares me about the whole situation.

Again, thanks Andy!

Welcome to the forum!

You've come to a great place for support and information!
If you are feeling rushed into this, that's a huge red flag. Too many Dr's are pushing for these units way too soon. These are supposed to be considered when most other modalities of pain management have not worked.
You bring up a good point about the pacemaker. I'm not sure on this either, like Andy says, it's two completely different situations.
Doctors make a ridiculous amount of money when they do these implants. On top of the usual surgery costs, they get a huge kickback $ from the manufacturers. In some cases it is very clear that 'greed' is the driving force that has them pushing the patient for these too soon.
I'll bet my bottom dollar that the reason your Dr doesn't even want to consider the pump is because it is a HUGE commitment between him and the patient. When I inquired about the pump, my Dr said...and I quote "NO Way will I do pain pumps because that means we have to get married" . Meaning of course, the refilling of the reservoir and the constant monitoring it would take.
On the contrary with the SCS, in most cases the doctor inserts the unit and leaves the follow up care to the reps of the manufacturers.

I usually don't spout negativity like this because there are SO MANY 'Good' healthcare providers who truly DO care about their patients, such as what Andy shared. I too am very happy with my SCS of 3 yrs. The soothing stimulation (like a cat purring ) does wonders in covering over the horrible burning neuropathy in both legs. And as you read thru the threads down below where the more active posting is (we are up in the 'stickies' right now) you'll get a wonderful scope of testimonies, both good and not so good experiences.

This is a huge decision and it is your body. Please don't let ANYbody pressure you or make you feel rushed.

It's great to have you here! If you want to start a new 'thread', just exit out of this dialogue and you'll see a "New Thread" on the left side of the screen to click on. That way your post will be seen much better and you'll get a lot of responses. As it is right now, we are posting on the tail end of a different thread.
Just ask if you have questions on how to get around. People are very helpful and caring here at NT.

Caring,
Rae

Thanks for all the info guys, it really helps! I've been dealing with this since 2002, so I am at the point where everything has been tried more than once. When I was treated with fentanyl & hydromorphone, I was working at the best place to do good research. I moved home to help my Mom & Dad, because my dad's alzheimer's was getting bad. I'm glad I was here for his last 2 years. The problem came with the docs here, they stopped all treatment and told me nobody in this state would treat like I was treated in Baltimore. I tried a methadone clinic because i thought it was my only option. After 5 years of dealing with the hosp & docs that stopped my treatment, I finally looked for another place, which is where I am now. My work comp people approved the first appt, then un-approved it the day before, so they haven't covered a thing with the new clinic, which started July 7th and has involved many appts.

My cardiologist said exactly what you said, that it was my body and not his choice. He uses threats of discontinuing transdermal fentanyl if i don't do stuff on his schedule. He's not even using half of what I was on, but it at least dulls the pain somewhat. I'm really not sure what to to or if I need to switch docs again. I do know I'm not going to put up with horrible treatment as long as I did with the other system. I just want to get back to work, I'm going crazy not doing anything productive!

Hello All, new here and recent Medtronic's Cervical SCS this past June 19th. After getting over feeling of having been truly un-prepared for the post-op realities and I'm now still in the midst of healing and my STIM is off due to the device shocking me in the battery area. After several times of trying after each few more days of healing time, still left with having to turn it off. My trial went very well so needless to say this has been very disappointing.

I have had several Nerve Ablations to lower facet & sciatic nerve, Ulnar Nerve Transpositions both arms, left arm twice, ACDF to c5-c6. Permanent damage to left arm=Neuropathic Neuropathy. Needles to say I am struggling with all the different narcotics etc. SO I had what I still believe Realistic Expectations with the SCS but not to have gone through having implant only to had it off and still on just as many medications and now dealing with this.
I am trying to stay hopeful that Drs. can get things on track but I am abit down with all this.
Any helpful words?

Welcome!

I am so sorry to hear that you are going thru this, especially when your trial implant went so well.
What does your Dr have to say about this? It sounds as if you've probably gone back for 'tweak sessions' with the Reps, hoping to get coverage where you need it. In many cases, repeat visits are a necessary part of the healing process. At this point tho, I understand your frustration, especially regarding the shocking sensations at your battery site.

I know you will get good responses on this from our members here. Might I suggest that you begin a new thread of your own so that your inquiries will be seen better? Right now, we are posting up in the 'information' part of the forum.
If you exit out of this dialogue, you will see a 'New Thread' tab on the left side of the screen. Click on that and your thread will be seen down where all the active posting is.

Meanwhile, while you wait for responses, you can do a 'forum search' regarding your battery site. The search tab is on the right side of the screen. Just type in key words such as 'pain at battery site', or 'shocking at battery site'. This will bring up posts from past discussions on this. Hopefully this will help.

It's great to have you here! Stick around - there are many caring people here. I hope that you will soon have your new unit up and running. Just holler if you need help finding your way around or have other questions.

Caring,
Rae