CONSIDERING NEUROSTIMULATOR IMPLANT..I NEED INFORMATION

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Cronic Wrist Pain Can You Help
New Member


Date Joined Feb 2010
Total Posts : 7
   Posted 2/25/2010 2:45 PM (GMT -7)   
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

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 2/25/2010 3:14 PM (GMT -7)   
Hi Cronic and welcome to Healing Well's chronic pain forum. I am sorry that you have to be here but very glad that you found us. You are at such a young age to be bogged down with issues like CP, it just doen't seem fair. But, it has no age discrimination either. If you have read any of the posts here then you can see we are a great group of caring folks. We try to help each other as much as we can.
 
We do have members here with the SCS and they will post perhaps later and give their two cents. I don't think we have anyone here with one for wrist pain. Are you going to be scheduled for a trial run for SCS anty time soon. Even with an implant, you will not be 100% pain free and most likely will need to be on some form of pain medication. You need to do a search here at the forum for the SCS and you will find lots of info on it.  It has been discussed here many times. I also suggest that you go to Medtronics.com and read up on the device there. They have an area on the site devoted to the SCS implants. I have a Medtronic pain pump and I am familiar with their site.
 
If your drs think you may have RSD, then I really think you need to educate yourself as much as possible about that condition. It can really be a booger to deal with and educating yourself is really something good. Most people with RSD do need help from a PM dr for care and treatment.
 
Take care and good luck.
 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.


IsThereAnEnd?
Regular Member


Date Joined Feb 2010
Total Posts : 66
   Posted 2/25/2010 4:36 PM (GMT -7)   
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!
Cardiomyopathy, Celiac Disease, High Blood Pressure, 2 Fusions @ L4, L5, S1, 2 Fusions @ C7 & C8, Implantible bone growth stimulator cervically, and soon to have Neurostimulation Therapy to treat lumbar, Chronic Pain Sufferer for 8 years, take several meds daily to survive! Looking for a miracle I think ~


Cronic Wrist Pain Can You Help
New Member


Date Joined Feb 2010
Total Posts : 7
   Posted 2/25/2010 4:45 PM (GMT -7)   
Thanks for your reply. DO you think during the trial it helped? where will they be placing the stim??

Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2279
   Posted 2/25/2010 5:57 PM (GMT -7)   
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

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 2/25/2010 6:23 PM (GMT -7)   
Hi Wrist Pain,

I don't have a stimulator yet, but I am in the process of getting one (currently fighting my insurance company). However, my stimulator would be for chronic facial pain. My surgeon was concerned about the placement of the battery as well (I'm also a female in my early 20's), although frankly I'm not. I have so many scars on my shoulders from many surgeries that one more scar on my chest wouldn't make much of a difference. But I don't see why you can't ask if the surgeon could let a plastic surgeon close the wounds so that you have the smallest scar possible. Good luck with the trial.

Skeye

Cronic Wrist Pain Can You Help
New Member


Date Joined Feb 2010
Total Posts : 7
   Posted 2/25/2010 8:22 PM (GMT -7)   
Frances
Where is your pain, that they were able to put it near your butt?
Do you think it helps with the pain?

Cronic Wrist Pain Can You Help
New Member


Date Joined Feb 2010
Total Posts : 7
   Posted 2/25/2010 8:23 PM (GMT -7)   
Skeye
The scar isnt what I am concerned with... a scar tells a story right? (I have multiple on my wrist) but I am concerned with being able to see it through the skin. The device is not tiny. I'm not comfortable with that, I feel like it would like weird, like something out of a scientific movie lol...I watched the video but it didn't show where anyone had it in, and there's not many pictures on here...

Did you do the trial? Did you think it helped?

JKay
New Member


Date Joined Jan 2010
Total Posts : 19
   Posted 2/25/2010 8:47 PM (GMT -7)   
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
Left pelvic CRP due to botched hysterectomy. Right kidney removed due to cancer.


Cronic Wrist Pain Can You Help
New Member


Date Joined Feb 2010
Total Posts : 7
   Posted 2/25/2010 8:56 PM (GMT -7)   
JKay,
Thank you for your reply. I dont know what to do, it is a HUGE step for me. I am very interested in everyones exprience, where the pain was/is and how helpful the device is.
PS LOL about the staring.

JKay
New Member


Date Joined Jan 2010
Total Posts : 19
   Posted 2/25/2010 9:01 PM (GMT -7)   
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.
Left pelvic CRP due to botched hysterectomy. Right kidney removed due to cancer.


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 2/25/2010 10:28 PM (GMT -7)   
Wrist Pain,

No, I haven't had the trial done yet. I was supposed to have it done back in December, but my insurance company denied coverage the evening before I was scheduled for surgery. I have really good feelings about the trial though. There are a lot of factors that point towards it being successful for me, but of course I won't know until I am able to try it. Hopefully the insurance will say yes to my appeal & give me that opportunity.

Skeye

Stella Marie
Veteran Member


Date Joined May 2005
Total Posts : 601
   Posted 2/26/2010 4:12 AM (GMT -7)   
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.

Stella Marie

Moderator for Chronic Pain

Rare neurodegenerative /movement disorder called “Multiple System Atrophy”.  Mobility issues,, neuropathic pain,  spasticity, myoclonus, central apnea, collagenous colitis, joint and body pain, swallowing and respitory  involvement,  Implants: intrathecal pump & neurostimulator.  Extra features: O2 & wheelchair.

 

 


Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2279
   Posted 2/26/2010 11:30 PM (GMT -7)   
Pain in neck, back of head, right shoulder & radiating down my right arm to my thumb.

The leads are a C2 (top of my neck). Ideally they would be at C1, but I have scar tissue there from a prior surgery.

They made a 3-4" incision in the center of my back between my shoulder blades which they used to feed the leads up to my neck. From that same spot they fed the cord down to the stimulator. I'm tall, so they ran out of cord at about my waistline, so I have a 0.5" scar where they put in the extension cord that connects with the stimulator in my butt.

The Boston Scientific SCS stimulator that I have is somewhat smaller than the Medtronic neurostimulators, but the difference is not huge. Honestly, you will not look like a mangled science experiment. When I bend over you can see part of the device. It looks like a small, nearly flat block under my skin. You cannot see the whole thing unless you grab & pull at it (which I used to do when I first got it, but that's a big no-no, because you can flip it inside your body & they it won't be able to recharge). You cannot tell it is an electronic device unless you're looking at an x-ray or something.

I've seen people who've had them up by their collar bone. That was what my first surgeon recommended & he had both pictures & live patients to show me. It really doesn't look that bad. The scar creeped me out more than anything because for some crazy reason he used staples. You will not look like you belong on Star Trek unless you are well below your ideal weight range. It is a bit more noticeable on skinny people up by the collar bone, but really it's not horrible. For mine, at least, they made a "pocket" for it to fit in. That is, my PM removed some of the fat where he wanted to put the pack. That way, it was more even with the area surrounding it. :)

Really, though, only your surgeon can tell you what his plan is. Some surgeons don't do it the way mine did & even my PM doesn't do it that way for all of his patients.

YES!!! It makes a night & day difference in my pain level. I wish I could sleep & drive with it on. If I could do those & type for longer periods of time with it turned on, my life would be ideal. I don't mean to say that it took away all my pain, but it did lower it. Stella brings up a good point about doing a site search. Many people have commented on the outcome of both their trial & their implant (if they went through with an implant).

best wishes,
frances

Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1559
   Posted 2/27/2010 5:46 PM (GMT -7)   
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.
I live to "Tame My Pain!" 


Cronic Wrist Pain Can You Help
New Member


Date Joined Feb 2010
Total Posts : 7
   Posted 2/27/2010 5:54 PM (GMT -7)   
Frances- Thank you for all of the information! Just out of curiosity, why cant you use it while driving and sleeping?


Scarred- Where is your pain?

JKay
New Member


Date Joined Jan 2010
Total Posts : 19
   Posted 2/27/2010 8:28 PM (GMT -7)   
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.
Left pelvic CRP due to botched hysterectomy. Right kidney removed due to cancer.


Cronic Wrist Pain Can You Help
New Member


Date Joined Feb 2010
Total Posts : 7
   Posted 2/27/2010 9:57 PM (GMT -7)   
Thank you JKay..Good information!!

Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1559
   Posted 2/28/2010 7:43 PM (GMT -7)   
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
I live to "Tame My Pain!" 


Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2279
   Posted 3/2/2010 11:00 PM (GMT -7)   
Scarred,
Great news! Good luck with everything.

CW,
JKay is right about driving. I don't text or talk on the phone while driving. The issue is it can jump & cause a distraction for a few seconds. I'm not taking any chances. :) Better to take the bus if I'm in a bunch of pain.

As for the sleeping, I don't know why. It's not a horrible feeling. I can lie down & watch TV just fine, but for some reason I can't actually get more than a few minutes of sleep -- and that only when I'm really exhausted -- with the unit on. Can't tell you why that might be, but I've talked to plenty of others with the same problem. If you search back to "FatherJohn"s posts he talks about the same issue for him. I think my mind maybe is just unsettled by that prickly feeling. Maybe it thinks something is wrong & is trying to figure out what it could be. I don't know. Usually I will turn it on for a while before I got to sleep & then turn it off when I'm ready to nod off. There is a residual effect -- especially after you've been using it for a few months -- that allows the pain to stay masked to a certain degree for a while after you turn the unit off.

It might partly depend on what your settings are. Boston Scientific has a much wider range of settings that can be programmed into their units. If I understand it right, the "volume" settings are predetermined on Medtronic models. Though that may have changed since I talked to them years ago. Boston Scientific actually has fewer settings on their remotes, but those settings can be programmed by the reps to go much higher or much lower than the Medtronic models. Mine is set quite high according to the rep. I literally twitch & shake when I am on the higher settings. People sometimes think I am having a mild seizure when they see the shaking. But after 5 minutes, I feel so much better & can turn it down quite a bit. Still, my lowest settings are still fairly strong stimulation.

So, maybe since the Medtronic models seem to have pre-sets that go down lower than where mine goes down, the lower settings will be tolerable for you to sleep with it on. All told, though, getting relief throughout the day can make it much easier to sleep at night even with the unit off. I didn't realize how much the fatigue & resentment used to build up as the pain would increase throughout my day. Now I can have a fairly normal day (pain decreased from an 8-9 to a 6-7) so I am better equipped mentally to manage the pain I feel at bedtime. Plus, since I have been doing so much better I now only have my unit on maybe a couple hours a day. It took a good 18 months probably to get to that point, but eventually it does seem to have a lasting impact on that vicious, never-ending pain cycle.

take care,
frances

Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1559
   Posted 3/3/2010 11:34 AM (GMT -7)   
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
I live to "Tame My Pain!" 


rena2020
Regular Member


Date Joined May 2010
Total Posts : 42
   Posted 5/29/2010 12:03 PM (GMT -7)   
I am looking for some information on anything that would be helpful to me for the SCS trial. I am scheduled June 9 for this.

Thanks so much
Rena

I will be getting the Boston Scientific

Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2279
   Posted 5/29/2010 2:47 PM (GMT -7)   
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
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