CONSIDERING NEUROSTIMULATOR IMPLANT..I NEED INFORMATION

Hello,
I am a 25 year old, and I have had wrist pain for the past 3 years. I have had 4 surgeries and the doctors still feel there is something "mechanically" wrong. The pain management doctors are going under the assumption that it is RSD, Reflex Sympathetic Dystrophy, which is a little scary after doing some research on it.
The pain has put my life on hold, I cant drive because I'm in agony for days after (therefore my social life is at a halt), I cant go to school full time because I can't write without pain.
Pain management has had me on multiple pain medications, including narcotics. They just brought up the option of possibly implanting a Medtronic Neurostimulator. I am concerned because this seems like a BIG step. And its not guaranteed that the stimulator will help. I have a couple questions.

1. Is the stimulator visible through the skin? Do you have any pictures posted?
-Since I am 25, during the summers I am often in a bathing suit/tank tops and I am concerned about how it will look through the skin

2. Do you have any side effects that I should be aware of?

3. Do you believe this helped your pain? Are you pain free??

4. Would you recommend the stimulator?

I need all the information i can get,...if you cant answer these questions, ill take other advice.

Thank you in advance for your answers

Hi Chronic ~
Welcome, welcome! Too bad it is due to CP. I too am about to have a Medtronic stimulator put in.....I go for my trial in two weeks. I did tons of research before deciding and came across this fantastic blog I will share with you ~ http://chronicstimulation.blogspot.com/

There is a wealth of information there. She is a 30 year old woman who had hers implanted last January. She walks you through each step.....all in easy to understand terms.

I am more than happy to share my experience with you when I get started.....I know how important a support group is. Living with CP is a nightmare and I pray daily for a miracle. Keep in touch and we'll chat soon!

Huuuggggsss!

CW,
I don't have the Medtronic model, but I do have a stimulator. It is visible -- there is a 2" small scar where they inserted the stimulator pack & you can see a faint outline of the pack which becomes more obvious depending on what position I am in. It really depends on your size, though. I am below my recommended weight range. You should ask your surgeon how deep it will be. Your surgeon should also be able to tell you what kind of closure they plan to use. I've been told they cannot use a plastic closure for the place where they input the pack (there are some surgeons who will use a plastic closure for the place where they input the leads -- though even without a plastic closure mine healed to be almost invisible). Assuming that's the case, you want to pick a surgeon who is very patient & good at doing lots of very tiny stitches (the smaller the stitch, the less it will scar -- also smaller needles make a difference because they won't leave visible marks where they are pulled in & out).

A good cosmetic dermatologist can help give you some additional guidance. My scar became keloid & my derm. wrote me for a topical steroid. Once that healed, I used an OTC med called ScarGuard -- you paint it on like nail polish. You have to wait until the wound closes, but it really worked great for me. :)

As for the visible pack, it is not visible from a difference & honestly I was not in any shape to even go to the beach before so it didn't make a difference to me. Even though my leads are in my neck, my PM agreed to put the battery back in my buttock below where my low rise jeans hit me because I was so ridiculously vain about not wanting people to see it. No one can see it through my tankini unless I bend over (pelvic bone pushes it out so it becomes slightly visible). If it weren't below the line for my tankini bottom, I suppose it would be somewhat visible.

I'm not sure where you're planning on getting yours implanted. Some people get it up by their collar bone, some get it in their butt & others get it in their stomach. Because of my size, the stomach was not an option (not that I would have felt comfortable having it where I could see it anyways). My PM gave me a choice of the other 2 locations. But there are different factors, so your surgeon can let you know what options you might have.

If you search the web there are photos out there. Probably not of ones in people's lower back because that would be borderline ****ographic. You might try asking the Medtronic rep if they have pictures of the implant site for past patients. But realize that you might not have a similar result. The most important thing is to carefully follow post-op instructions so that it doesn't migrate & so that the wound heals properly.

Hope that helps put your mind at ease a little bit.

best wishes,
frances

Frances
Where is your pain, that they were able to put it near your butt?
Do you think it helps with the pain?

I got the stim implanted in June of last year after 2 trials, I have complex regional pain in the pelvic area, they tried a different procedure direct through the pelvic bone as it didn't work in the spine. Yes you can see the box under your skin on your butt. I don't know if it's the same for everyone but I have some tenderness around the box. I hope your Drs. are not misleading you because I was given the relief rate of between 50%- 70%, and I am never completely pain free, but that is a lot when your in bad pain all the time. I too have not been able to find anyone after seeing 9 different Drs., who could help me. if you have exhausted all other avenues it might be worth the try, if it doesn't work you can have it removed. And you are right scars till a story, mine has many chapters. I wish you luck. PS I'm old so not much staring at my butt going on but I understand where your coming from on that. LOL

It is a big step so think on it, There is no guarantee how much relief you will get and you probably will still need meds with it. Take Care.

There have been many threads on SCS's. Use the search feature and scan all of the posts of stimulators. You may find some very useful information. Good luck.

Frances;

why can't you sleep with yours on? I can understand the driving, but sleeping? My doc says I will be able to sleep with mine on. They can set it for different settings so that it is maybe different at night when I am laying down and different when I am sitting up and different when I am laying down. I was given a 50% rate for the lowering of pain and that is definately significant for me. Heck I'd be happy with a 40% decrease in pain! But anything below a 50% is a failure in their eyes.

I was told I would be awake for both procedures. The trial is 5 days and no longer. The implantation would be where I was awake for when they implant the wires, cause it will be the same way that they do it on the trial, but that they would give me some medicine to make me sleepy to finish with implantation of the box in my butt.

They are afraid you may have a surge while driving, just a precaution, but I have mine on all the time while driving, since that is one of the things that causes me the most pain, otherwise I'd never go anywhere. I also use mine every night. another thing I wanted to mention is that you will need to have your programmer with you at all times, doesn't mean you need it in your pocket but you should have it near, it will become a permanent part of your life. And you will spend several hours at least charging your unit, how often depends on how much you use it. I use mine almost all the time and it's about every 5-6 weeks.

Wrist;

I have lower back pain from two failed back fusions which my doctors have diaginosed it as failed back syndrome, Chronic Pain and nerve pain that radiates down my left and right leg. I have several dead spots and am not able to do most of the things I desire to.


I have been (as of Friday) approved for the stimulator and am now waiting for the insurance to approve it as well. So I am ready to take that step into the next piece of my life

hugs

Scarred

Oh goodness that is a great decrease in your pain Frances! Fantastic! I do hope I get that good of a relief in my pain. I think I would rather have the wierd feeling in my legs then the pain running down them.

hugsss

Scarred

Rena,
There are a number of threads on this topic. I think just about every angle has been covered. If you haven't already, you can use the search feature in the upper right corner of the page to search for "neurostimulator" "spinal cord stimulator" or "SCS".

Really though, the best way to tell whether or not it will be a good option for you is how well the trial works. If the trial helps, it's probably a good option. Only caveat is that you must follow the post-op instructions to the letter (restrictions of movement, lifting, etc.). That's probably the hardest part of the whole process.

Good luck on the 9th! Let us know how it goes. :)

frances