[SShew52]

I had gastric bypass surgery in 2002. I did well for about 5 years then I started having strange sensations in my stomach area. It is very severe and interferes with everything I do. My legs get weak too. It is hard to explain it. It is like adrenalin being sent out and although you wouldn't say it is pain it is like pain. The docs think I have nerve damage from the surgery. I have had lots of testing for 3 years and that is all they can explain. Meds don't help and there is so many drugs I just don't tolerate that my doctor is recommending the spinal cord stimulator. Has anyone had it implanted for abdominal nerve pain?? Do you think it can work and give me back my life??

Sue

[Rrae]

Glad you found us in our little cyber-corner of the world
But, Gee Whiz I am sorry to hear of this mysterious pain battle you are faced with !
This is a very unique question !
It seems a bit odd that the docs want to pin the pain on 'nerve damage'.....as you said you were doing fine the first 5 years after your surgery. ?
When it comes to pain within the abdomen, that is certainly something of concern, as our major organs are there.
Is the pain like a 'burning' type of pain......or is it 'stabbing' ?
Is the pain constant, or does it come and go?

Have any of the doctors mentioned anything along the lines of possible internal RSD? (Reflex Sympathetic Dystrophy)
Sorry to bombard with questions,.... ! I'm just trying to get a better angle on this. To be honest, I have never heard of SCS for abdomen pain.....but maybe someone will speak up if they have.
Where does Doc want to put the leads? You said this affects your legs (weakness)......do your legs feel 'heavy' and are they in pain also?

This has me very curious....

Please stick around, Sue.....we may not have any answers, but we sure want to give you all the support and share what we DO know!
This could be a huge learning experience, and we are continually building our strength off of one another here.
I'm gonna do a bit of digging and see if I can get a handle on what the SCS has to offer in this scenerio you describe.....

Hang in there, you've got friends!!

Rae

[fionab]

Since being new to the whole SCS thing, I have heard here and there about other folks who use it for problems other than neck or back pain. Did hear of a lady who has a SCS for bladder pain...was told it helps her a lot. Her daughter said she felt like she had a bad bladder infection all the time before the SCS was put in. My neighbor told me she knows a lady who has a SCS for hip pain and loves it. She was showing it off at a baby shower. Hope you find some answers and relief for your pain!!

[SShew52]

It is just a weird feeling inside my stomach area. I just saw the pain doctor and she called it visceral pain. It is deep inside, feels like there is a live wire inside, sometimes feels like twitching, sometimes like anxiety. Nothing has helped I have tried all the obvious stuff. MRI's CT scans even an exploratory surgery the surgeon who did the gastric one tried. He says he feels there is nerve involvement, I've tried all the meds neurontin, lyrica ect. I've had nerve blocks that did work but don't last. They do it to the celiac nerve.It numbs the abd. organs. I can't tolerate the side effects of the meds. I have been going through this almost 3 years. I hope that maybe this can be the answer and at the same time it scares the crap outta me. Anyway I am set up to get psych eval. Thanks for being there. You guys are great.

[Rrae]

OK, that paints a clearer picture.......
Try not to let 'anxiety' over this get the better of you (believe me i know)
It sounds as tho your doctor(s) have a good handle on your situation.
I guess the key is: do YOU feel confident in your doctor.

i did a google search on 'SCS for abdominal pain' and was amazed at how many sites popped up. There is extensive studies on this and several of the sites indicate 'SCS lowers pain scores and improves function in abdominal visceral pain of unknown origin".....
That sounds comforting!
And the real great thing about it is you get to do the 'trial' first. Right?
I'm assuming this?

And regarding the psyche eval, it's a piece of cake. It's simple protocol mainly for the benefit of the insurance company since this is a high dollar procedure. We've all had one......so don't think yourself as 'crazy'.....
...well, if YOU are then i guess we ALL are
There's discussion on this topic in some of the older threads down the list....

Anyway, please keep us updated! We want to see this work for you!
We have much faith and you'll get plenty of support. Sometimes, the process of getting the implant can be rather taxing, but when you look back on it, you'll see that everything unfolds as the weeks go by.
The main thing, try to stay focused on your progress and the fact that you want your life back. That's what it's all about.
You've been under Dr's care for this mystery for a few years now, so your case management is probably well-documented and your healthcare team know what they are doing.
Communication is key.

Hugs & Prayers coming your way!
Rae

[SShew52]

Thanks for posting about the yahoo sites for scs for abd. pain. the doctors office said they just implanted one for a lady who had intractable pain after having gallbladder surgery. She loves it. I have all but talked myself out of this procedure due to reading the negative stories. I am glad all the questions get answered here. My life has been so tied up with this for so long I don't feel like I have a life. I go to work and just do one thing at a time and can't make plans for anything because this thing inside of me has taken over. This does seem to be my last option and the doctor said she will hook me up with the other abd. pain lady, maybe I will get my courage back after that. I guess I am afraid of making the decision and being wrong, after all I am in this predicament because I chose to have gastric surgery. Thanks for the encouragement

[melly27]

Originally Posted by SShew52

I had gastric bypass surgery in 2002. I did well for about 5 years then I started having strange sensations in my stomach area. It is very severe and interferes with everything I do. My legs get weak too. It is hard to explain it. It is like adrenalin being sent out and although you wouldn't say it is pain it is like pain. The docs think I have nerve damage from the surgery. I have had lots of testing for 3 years and that is all they can explain. Meds don't help and there is so many drugs I just don't tolerate that my doctor is recommending the spinal cord stimulator. Has anyone had it implanted for abdominal nerve pain?? Do you think it can work and give me back my life??

Sue

Hi Im new to this site and have found it great for me, im due to have my trial implant done on the 29th June 2011 for lower back pain, abdomal pain, bladder and pelvic pain so i will let you know how things go! x

[melly27]

Hi im new to this site and have found it great and very imformative, i too suffer from chronic abdominal pain, lower back pain, badder, kidney and pelvic pain for which i am having my trial implant done on the 29th June 2011. although SCS is usually used for Complex regional pain syndrome and RSD studies have shown it can help for the above. I will let you know how things go! x

[Mark56]

Originally Posted by melly27

Hi im new to this site and have found it great and very imformative, i too suffer from chronic abdominal pain, lower back pain, badder, kidney and pelvic pain for which i am having my trial implant done on the 29th June 2011. although SCS is usually used for Complex regional pain syndrome and RSD studies have shown it can help for the above. I will let you know how things go! x

And a hearty WELCOME to you! We will nearly share the same "birthday" as mine will be a year old on 30 June!! I have been one of the successful stories among our forum, as I managed ultimately to withdraw from all pain management meds with doc's supervision. If you have any questions, pop them out and we will do our best to provide thoughts and answers to help.

The implant I had serves the lower half of my body as well. I feel blessed to have it.

Looking forward to knowing how your situation develops Melly!
I'll be around,
Mark56

[melly27]

Originally Posted by Mark56

And a hearty WELCOME to you! We will nearly share the same "birthday" as mine will be a year old on 30 June!! I have been one of the successful stories among our forum, as I managed ultimately to withdraw from all pain management meds with doc's supervision. If you have any questions, pop them out and we will do our best to provide thoughts and answers to help.

The implant I had serves the lower half of my body as well. I feel blessed to have it.

Looking forward to knowing how your situation develops Melly!
I'll be around,
Mark56

Hi Mark Thank you for the warm welcome! So glad to hear that the SCS works for you, long may it continue, I thought i would let you guys know how my trial went in the hope it will be informative to some of you in a similar situation....I Had trial impant put in on the 29th June 2011, it went in really easy apart from a few sharp shooting pains whilst lead was being fed up through my spine! and a little pushing on my back. Getting the lead in was the easy part My surgeon only had to try twice to get the lead in the correct position, we found it the best at T7. The next step once the lead was in position was for the rep to find the best settings for the best coverage, this took a long time... for the first few attemps i could not feel anything at all even on a very high setting!!! i kept apologising for not feeling anything, after a number of attemps i began to feel the tingling sensation in my legs, buttocks and slight amount in by abdoman more to the right side! with a few more attempts and adjustments from the rep we managed to get approx 70% coverage (although a high setting was needed for it to cover my lower back and with that came more sensation in my lower legs(i do not have pain in my lower legs), my surgeon said this may have to be a compromise for the trial to get the coverage of my lower back).

Out of theatre and on the hospital ward i was given half hour neuro observations for 4 hours, and then had a visit from the rep who spent some more time with me going through some more settings and to show me how to use my new equipment, we were still unable to get stimulation just in my lower back and middle area without it running down my legs to my feet and once again it had to be on a very high setting!!!

So now bandaged up and at home that evening i felt extremely tired and quite sore so i topped myself up with my breakthrough meds and couldn't wait to use my SCS. The first two days i found it hard to tell if it was having much effect cause the incision site was getting more sore!

I found that for me to get the coverage i needed, i had to put it on a setting of 8 or above and sit or lie in a certain position, if i tilted my head forward the sensation would go altogether, if i tilted my head backwards it would increase, it took me the whole 5 days to find the best positions for me whilst on the trial (more programmes can be set when the full implant is fitted, they have settings for sitting, standing, walking, lying down etc).

I felt i wanted to have the trial for a few days longer as towards the end of the 5days the incision site was not so sore (although very itchy) so it made it easier to differate the pain, and id found the best position for me for the best relief

So day 5 and back to the hospital to have the SCS removed , this i found worse than the lead going in, for some reason it hurt like hell and i felt sick for ages after!

So my feedback on the trial was taken and all the details will be passed on to my surgeon, all in all i think for me it went really well i got approx 70% coverage and hopefully with the permenant implant that could be better with all the different settings and with the lead being more fixed, id say i had about 60% amount of pain relief and for the last two days of the trial i didn't need any of my breakthrough pain meds, i now have to wait for a follow up appointment in the hope i get a date for the full implant to be fitted (although there is a 3-4 month waiting list )

so thats my story so far! i hope by sharing it, it may be a help to someone! Im now of to have a long shower, my nurse dressed my incision site with a waterproof dressing!!!!! yipeeee!!!! Lots of Love to all who are in pain as we speak! Stay positive and strong and don't let it beat us!!!!!! Melly x