neurostimulator trial

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BethW
Regular Member


Date Joined Mar 2010
Total Posts : 132
   Posted 3/15/2010 2:40 PM (GMT -6)   
I'm new here. I am 5 days into my neurostimulator trial for back pain (degenerative discs 4 levels). I seem to be getting some pain relief from the stimulator, but... will the implant also cause stimulation in my legs like the trial unit does? I understand the reasons why the legs receive stimulation in order to get to the lower back, but... My back is bad, but it's not bad enough to deal with the stimulation in my legs. At least, not yet.

Thoughts? Help? Advice?

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 11044
   Posted 3/15/2010 8:00 PM (GMT -6)   
Hi Beth,
 
Welcome to Healing Well's chronic pain forum. I am glad you found us but sorry to hear you are having so many problems. We do have some members on the forum that are having success with the SCS. The problem with your legs should be taken up with your dr and the rep from the company that made your device. If you have a good rep from the company he can fine tune your SCS  with no problem. it does take some tweaking many times with the units. None of the members here are drs, therefore, we really cannot answer your question.
 
I do urge you to do a quick search here on the forum about the SCS and you will be able to pull up a lot of info about them. They have been discussed here many times. It would be much quicker to search the info rather than waiting on one of the members seeing your post.
 
I wanted to pop on and tell you welcome aboard and I hope that you will post and let us know how you are doing. Take care.
 

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.


BethW
Regular Member


Date Joined Mar 2010
Total Posts : 132
   Posted 3/15/2010 8:35 PM (GMT -6)   
Thanks! I'll do some digging!

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2850
   Posted 3/15/2010 9:27 PM (GMT -6)   
Hi Beth,

I really can't add any more to the great advice straydog gave you, but I just want to welcome you to HW. I'm glad to hear that you are finding some relief from the stimulator. I've been fighting to get one myself for some time now, but my insurance company is giving me a hard time. I hope that you stick around. This is a great place filled with wonderful, supportive, understanding people. Good luck with the rest of your trial. Definitely speak with your SCS rep/programer about the settings!

hugs,
Skeye

Stella Marie
Veteran Member


Date Joined May 2005
Total Posts : 601
   Posted 3/16/2010 3:52 AM (GMT -6)   
Wekcome Beth,
 
I am sorry to hear that you are in such pain.  I have a neurostimulator and YES your legs are definately going to be a major area of stimulation.  At first, I felt the stimulator was helpful in modifying my pain sensations, but now I  regret that my old PM talked my in to it.  Once I achieved adaquate pain control, I found myself using the stimulator less and less.  I did not find that the stimulator changed my need for medication.  To me it was just a change is sensations.  I found that my basic pain was now overlaid with the tingling sensation of the stimulator. There were times when my pain was so severe and when the stimulator sensations were added, I was in sensory over load.  It was like too many things happening to you at once.   Another reason I regret the implant is that I can no longer have MRI's.  With a disease like mine, plus a recent foot injury, diagnostic MrI's would have been helpful.  You also have a major decision about the type of leads you plan to have implanted. The percutaneous leads (untethered to your spine) tend to float a bit.  Movement of the leads when you lay down or sit up can cause hugh surges in the electrical sensation.  There were times that the settings were perfect for reclining, but I felt like I was beening electrocuted when I sat up or rearranged me position.  The other option is paddle leads.  If you opt to go this way, the surgery is major and a neurosurgeon must be present.  It is considered a mini-laminectory (spelling ?).  Recovery is much longer because pieces of bone are removed. 
 
If you are in doubt at all, wait.  Do not let the PM talk you in to a stimulator. The is always time later to do a retrial if this trial in not considered a success.   Also, do not forget this is big big $$$ for PM's and one or only two real surgeries they are able to perform.  If you do decide to have the implant, check and make sure how many stimulator's your PM has implanted.  Most PM's are anesthesiologists and are not trained as surgeons.  For many, stimulators and pumps are their first experience with hands on surgery.  Some are very good at it, some just basically stink.  My stimulator did not cover may pain and I ended up getting a pain pump.  I love the pump.  I has allowed my to acheive adequate pain control with a wide variety of options.  The pump gave me my life back.
 
You have a bid decision to make.  I recommend that you get out the old legal pad and draw two columns - pro and against.  List all of your issues and then added them up.
 
Good luck and keep us posted.
 
 
 
 


Stella Marie   Chronic Pain Forum Moderator

Progressive neurodegenerative disease called Multiple System Atrophy, muscle spasms, muscle pain, neuropathy, & neuropathic pain, central sleep apnea, osteoarthritis, and 2 pain implants – intrathecal pain medication pump and an SCS (spinal cord stimulator).  Extra fun little toys and gadgets; O2 generator and assorted wheelchairs, walkers, canes, and orthotic braces.  Med - too many too list or even care about!

 

 


Post Edited (Stella Marie) : 3/16/2010 11:44:48 AM (GMT-6)


Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 7970
   Posted 3/16/2010 8:49 AM (GMT -6)   
If your having problems during this trial, please let them/the doctors know to see if they can help and if they can't then maybe
don't consider it a good trial, as what your feeling now might not be able to be fixed...I think this is the next thing my pm doctor wants me
to try.......I hope you can get it to work good for you, keep us posted....
(((((((((((((((((((((((((((((((((BethW)))))))))))))))))))))))))))))))))))))))))))))))
hugz
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc (Lower Lumbar S1-L3 and Cervical C5,C6, C8 and T1), Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's, Ocular Migraines, mild carpel tunnel, ect.... "Would be nice if we could use the edit button in real life"...

********>^..^<********>^..^<********>^..^<********


BethW
Regular Member


Date Joined Mar 2010
Total Posts : 132
   Posted 3/16/2010 1:38 PM (GMT -6)   
It's not that I've had problems. I have had relief during the trial. I just don't like the leg stimulation. To get to the level where I feel the relief, I have to crank it up to a level where my legs and feet feel really bizarre. Not exactly painful, but uncomfortable. I'm not sure I'm quite at the "must do this" point if the leg stimulation is going to happen. Does that make sense?

I discussed this with my neurosurgeon (who has never done surgery on me), and he has agreed to do a stimulator surgery if the trial goes well. He has done a bunch of these surgeries, and he instructs other surgeons on the procedure. I'm going to talk to my PM doctor tomorrow and see what the plan will be. The PM practice isn't happy about doing "routine" ESIs, especially since a couple of them have been less than effective. We'll see.

Tomorrow I'm scheduled to have the leads removed. Should prove interesting.
DDD (4 levels- L2-3 thru L5-S1)


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 11044
   Posted 3/16/2010 5:37 PM (GMT -6)   
Beth, I am wioth Stella Marie on this totally. Don't get something implanted in your body unless you are absolutely sure this is what you want and need to do. If you are thing you are not quite there yet, most likely you are not. Listen to your gut feeling and really look at the pro & cons of it.

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.


BethW
Regular Member


Date Joined Mar 2010
Total Posts : 132
   Posted 3/16/2010 6:29 PM (GMT -6)   
Thanks for the advice and information, everyone. I know which way my gut is leaning, but I'm going to wait until after I talk to my PM dr tomorrow before I decide, if that soon.

All of this started about a year ago. I went in for ESI, and not long after that, I did something dumb, and I had another flare up. (By something "dumb", I think I bent over to pick up a shower sponge or something. I went back in for another ESI (I think it was 6 weeks after the first one). The PM practice I use has 4 or 5 doctors, and you can call and request a particular dr, but I didn't really care at that point, ya know? The dr looked over my chart and commented that I should probably do a stim trial if the ESIs aren't working. At the 2 week follow-up, I mention it to the PA who is my usual point of contact, and she said that the ESIs usually work, this was a fluke, but it was worth looking into. Fast forward to Nov/Dec, and I had another ESI that didn't work as well followed ASAP by one that did, and I decided to at least try the trial. It's not like it's a commitment, right? That brings me to today- T-16 hours until the wires get yanked from the trial, and I think I'm ready for them to continue the ESIs until they stop working all together OR they refuse to do anymore. Does that make sense?

Sorry for the ramble...

I saw someone else mention it on another thread, but I have to echo her sentiments. I feel like such a wimp sometimes. I "only" have DDD, and it's not constant severe pain. It's not even constant moderate pain. There's always some kind of ache there, but it varies from "eh, it ain't all that bad" to "OMG! Knock me out now!", but it's usually somewhere around, "Gah! Why won't this leave me alone?" to "Where did I put those pain pills again?" I see everything that all of you have gone through and continue to go through, and I'm humbled and in awe of your strength.
DDD (4 levels- L2-3 thru L5-S1)


Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2147
   Posted 3/16/2010 10:41 PM (GMT -6)   
I agree with the others about waiting if you're not sure.

I have leads at C2 & I still somehow manage to have stimulation down my legs sometimes. At times I'm glad for that, but most of the time it's annoying. Still, for me the annoyance factor is way better than the debilitating pain I was in before. If you have any other options besides surgery, I'd exhaust those first -- but that's me.

The one piece of advice -- and you can read old threads for more info -- I have is that you absolutely must follow the post-op instructions to the letter or your leads will move. For me that meant no washing my own hair for a few weeks post-op. And I couldn't bend my neck at all. So it was a huge hassle trying to set up a contraption to catch all the water while I stood straight upright in front of my kitchen sink while a very dear friend washed my hair. But I know so many people -- including members here -- who have discovered what happens when you don't take the advice. I certainly don't look down on them because I am a slow healer & after nearly 6 weeks I started to blur the line a bit & try to take on more than I was allowed. Well, the leads migrated (fortunately, only by a very, very small margin). I was lucky & we were able to manually manipulate them back into place. The whole thing was a mess, though, because my PM wouldn't assume responsibility for trying that & the osteopath who did was not terribly comfortable trying something that could lead to more surgery. But I assured him that the only other option I was considering was having the device ex-planted & he finally agreed. They moved back into place & I was super careful from that point on.

It took 12 months of reprogramming the device every 2 weeks, but I am so happy with my SCS now.

Hope you find something that works for you.

blessings,
frances

2244CRPS
New Member


Date Joined Mar 2010
Total Posts : 5
   Posted 3/17/2010 12:26 AM (GMT -6)   
Does anyone here have RSD/CRPS? I have had this for 394 days from a dislocated R wrist fracture. It needed surgery & a carpel tunnel release. Unstead I got a long cast. Later the carpel tunnel was done but it was too late, and now the CRPS has moved beyond the right wrist, hand and fingers up my arm across the neck and down the left arm. I just had my C4 SCS trial and it was good. The sensations were much better than the pain and I could move my finger and hand better than before. I am hoping that someday my hand will close. The leads were removed yesterday and the pain is back with full force. What has your experience been with the permanent surgery with paddel leads. Was it as good as the trail? I am dreading the next 8weeks before the surgery and the time the SCS can be turned on.

Chinodesigns
New Member


Date Joined Feb 2012
Total Posts : 3
   Posted 2/17/2012 9:12 AM (GMT -6)   
I just want to know how long did anyone wait to get their stimulator implant surgery after their trail stimulator surgery was removed ? It's been almost 2 weeks since I had my trail removed & I really want to get my implant already .

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 11044
   Posted 2/17/2012 10:35 AM (GMT -6)   
Hello Chinodesigns and welcome to the chronic pain forum. Since you have posted on an old thread few people will see your post and most likely no one will answer your question. Please start a new post with your questions so all members can see this and have some response.

Thanks and we look forward to getting to know you.
Moderator-Chronic Pain Forum
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