MARK....
I have not been able to figure out how the site works. Don't know the difference between a sticky thread and a post.
I just use the reply button to talk to people..............
DAWN

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?