scs for abdomenal discomfort? anyone?
 

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

Well Hello Sue!
 

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! :hug:
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!!
:grouphug:
Rae

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!!

abd discomfort
 

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.

Hi Sue!
 

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 :p
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
:grouphug:

abdomenal discomfort
 

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:o

ohhhhh yes
 

....very familiar with how this can 'take over' our life....
or at best, everything has to be planned AROUND our pain.......

I'm simply not familiar enuf Re: the SCS for abdominal, so I am unable to give much feedback other than to say, if there is ANY chance of this giving you back your life and if you feel your Dr is VERY good at this, then do the trial!
Unless there are high risk factors that seem to outweigh the benefits.....
I certainly don't want to attempt to paint a picture of 'false hope', especially not being real familiar with all that this involves for you....

Take note of the 'negative' stories, but don't let them be the deciding factor in your case. Alot of times, the negative ones are the ones we hear about moreso than the successes, simply because the 'successes' don't feel the need to be on pain forums much...... meaning, they 'go on' with life .....
I'm very VERY grateful for the 'success stories' that remain here at NT as support for the new members who are coming to these boards desperately wanting feedback straight from the patients who have been thru these procedures.
My heart wants to encourage you to GO FOR IT (if you can do a trial period)..
so at least you'll know you've tried.
But, maybe in your case there is much more at stake.....
PLEASE let us know! We want to be the support you need!

I am very interested to learn more about this......you're helping us to 'grow' and become more aware of what the SCS has to offer!
People truly are wanting to get more information from the patient's point of view.....
I pray this is something that will offer you the much-needed relief you deserve.!!
:hug:

Howdy Sue!
 

Howdy Sue, and welcome to this little corner of the universe. I just read the posts on your thread, and I am so glad folks have actively chimed in for you! We all know pain so intimately, and the sharing going on here re abdominal and gallbladder pain is just great. I didn't know such a benefit could come from SCS, but it just stands to reason that an implant could reach since even face pain, trigeminal neuralgia, is treatable through such an implant!

So, I hope all will go well as you discuss this with your doc, and I will pray for a good outcome of the discussion!:smileypray:

Glad you are here!
Mark56 PJ :)

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

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

Hi Melly!!!
 

And a hearty WELCOME :welcome_sign: 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:circlelove:

Scs trial
 

Hi Melly,

I'm Sinead from across the pond, I had my SCS implant last December (Medtronic) and so far so good for me, it's primarily for left side lower and left leg. I've had to have some tweaking recently and I too discovered that I needed a much higher setting to get my back some relief.

Have you decided to go ahead with the implant itself? Which SCS will you be getting do you know?

You're very welcome to our forum and there is lots of support here.

Best of luck
Sinead 

SCS and Abdominal Pain
 

Hi:
I am new to the forum and have been looking for info re SCS and abdominal pain. I have had upper gastric pain for 5 years. After many tests, pancreatic proceedures, acupuncture, chiropractic adjustments and pain management I felt that there was no relief for my chronic pain. Last May I went through a week long trial with Boston Scientific SCS. My pain is intermittent and the week of my trail was not an especially painful week. Even with pain levels of 5/6 I could tell that this was a treatment that could help me. I am scheduled for my implant this coming Friday 8/5/11. I am excited and scared at the same time but can hardly wait. I have worked with top GI doctors at both Cedars Sinai and UCLA and they have had successes with SCS and abdominal pain. My leads will be attached at T6. Hopefully it will help you too.

Sandy Kay

Welcome Sandy Kay!
 

May all you hope and expect from your rapidly approaching implant procedure be achieved. You speak of institutions which are highly respected and populated with doctors whose knowledge is top notch. My implant surgeon, an orthopedic fellow, taught at UCLA and speaks highly of it. He is one of my favorite people among my short list of favored ones who have treated me.

I was implanted with paddles at T8/T9 for low lumbar and leg pain due to permanent nerve injury. Gotta tell you I have been thrilled to have this blessing within my life for now over a year, and last night I was the singer for the family combo at my mother-in-law's 80th birthday celebration as she danced with each of her four sons. Being able to achieve that gave us the means to bring joy to her and a huge smile to her face. Priceless!

May it be the same for you,
Prayin for you too,
Mark56 :grouphug:

SCS for abdominal pain
 

Hi guys,

Ive just been reading through some of these posts again and yes I can understand how it can be difficult to understand how the SCS might work for abdominal pain but last week I was watching some TV about a teenager who couldn't pee. The doctor she saw suggested SCS to help her problems and apparently it worked. The leads were connected to an area near the coccoyx. So if SCS works for bladder problem why cant it work for abdominal pain, the question still remains how does it work, where do they put the leads, it obviously has to go along the spinal column somewhere and we know the CNS controls lots of things we dont even think about.

S xxxx :)

Hi Sinead, sorry its taken me so long to get back to you! I have decided to go ahead with the implant and its the same one as you are using the Medtronic, after the trial it seemed my pain that following week was worse than ever so i just can't wait to get my operation date! there is a 3-4 month waiting list but im hoping it will be done before Christmas. Im so glad the SCS is working well for you, i will keep you posted how things go :) Thanks for the reply Melly x

SCS for Melly!!
 

Hi Melly,

I'm so happy everthing worked out with your trial and you can now go ahead with the implant, hopefully it won't take as long as 3-4 mths, it's a long time to be in so much pain. I guess I was lucky I got mine all implanted within about 6 weeks. How long have you been suffering from this awful condition? If you fancy reading my story it's in my profile.... it's a long story!:eek:

My system works very well although I have a long way still to go. My consultant did tell me at the very beginning that it would take about 18mths to get the full benefit of the implant and so far he hasn't been wrong. I'll tell you about that another day.

In the meantime take care of yourself, are you working? if so how is that going for you, i'm trying to work full-time, I work in Admin at a University, it's tough going but I want do it.

Stick around, it's good to have you and we're a good bunch for those of us who need support and can offer support to others.

Later alligator,

Sinéad xxx :hug::hug:

Hi Sandy Kay
 

Hi Sandy Kay,

It's great to have you here and you are very welcome. I've just realised you had your surgery last Friday, I hope it all went well for you. You'll obviously be very sore for a while but hopefully you'll be getting some releif from the dreaded pain. Did you have leads or paddles and i'm curious to know what system you had implanted, either way the SCS in my opinion is the best thing ever and it has truly made a huge difference to my life, I had my medtronic implant last December so far so good but still a fair bit to go.

Please let us know how you are.

I look forward to getting to know you better.

Take care

Sinéad xxx :hug::hug:

18 months Sophie???
 

That kinda boggles my mind Sophie, that you were told it would take about 18 months to receive the true benefits of SCS. I reckon I just don't understand as no one in my group of docs ever spoke of any waiting time frame such as this. Is it possible it has something to do with the difference in our medical systems, given the number of instances of Trial in hospital followed a couple days later by the real surgery? It all seems such a rush in Ireland and UK whereas across the pond here we receive a one week Trial usually followed by scheduling the implant surgery. I just wonder whether the process on this side of the pond gives more opportunity to reach an effective conclusion.

Curious,
Mark56:hug::hug:zz

Hi Sinead, i agree with you 3-4 months is a very long time but compared to how long ive been in pain its not so bad, ive lived with Chronic Pain now for about 5years, previous to that i had pain but the last 5 years its taken over my life and changed me as a person and it has had an effect on all my loved ones, frends and family, My husband is my rock. Living with Pain is the hardest thing i have ever had to deal with in my life it robs you of so much! which im sure you are fully aware!!!!

My Pain is abdominal, pelvic, lower back, bladder and kidney.
ive had 6 operations (removal of Endometriosis from my badder, bowel, pelvic area, Total Hysterectomy at the ripe old age of 36, removal of a Growth where my cervix used to be, removal of Granuloma tissue twice, and a Vaginectomy) over the last 4 years in the hope of curing my pain but it still remains, some Doctors have told me that sometimes even when the horrible stuff has been taken away which was causing the pain the brain still thinks its there and still sends the pain signals (so even my brain doesn't work right lol) I also suffer from recurrent Kidney Problems and infections and my Bladder does not empty so i have to self cathertise 5 times a day (which i hate im 38 not bloody 70)

So after the operations and endless amounts of different Medications (a the moment im on Buprenorphine Transdermal patches 20mg/per hour and Co-Dydramol and Diclofenac sodium for breakthrough pain) my Pain Doctor suggested SCS as the last thing to hopefully help!!! As you know the trial went well and its just a matter of waiting now and staying positive :)


A Big well done for you working Full-time :)

I used to work full-time but over the last 4 years ive had to cut my hours and take alot of time off for the surgeries, about a month ago i handed in my notice as i couldn't cope anymore! My managers were so supportive but i hated being the girl whos always ill or in hospital, i hated feeling so doped up on medication that i was a zombie and felt out of control or had my head down the toilet, i just felt i couldn't give the company 100% like i used to before i became ill, having to give up on something you enjoy and have worked so hard for is sole destroying id been in my current job for 7 years and loved it, yet another thing Pain has taken away from me, but on a bright note hopefully if the SCS works for me i can go back even if it means slowly building up my hours. Ive been home a month now and i can say i have less stress but if i have a good day Pain wise i so wish i was at work and when those good days come i end up doing to much and regret it and suffer the next day or so, i still struggle to pace myself, something healthy people don't even have to think off.

Ive read you story and WOW after all youve been through your still working full-time, i hope that the SCS continues to help you and enables you to continue to work. When you had the full implant how was it compared to the trial? did it hurt more? and how long was it before you could drive and go back to work?

Hope your having a good day today, im in my dressing gown feeling not so good overdone things, i have a 15 year old daughter whos on school holidays and wanted me to take her shopping yesterday, so not only did i have to pay for everything im now paying again only this time in Pain not money!!! it was worth it though to see my daughter happy and spend some time together!

and your Boxer dog is lovely my husband used to have a boxer beautiful dogs!

Well im signing off now please keep my upto date on how things are going for you,

:circlelove: hopefully speak soon Melly x

Two different patients two results
 

Hi Melly- The love of my life did have to go through a variety of surgeries to eradicate endometriosis via laparoscopy and laparotomy and laser. In her early forties, the full hysterectomy. Adhesions which had caused much pain earlier did not recur and she did not have that brain memory of the pain plague her. A Blessing.

My Sis Terri, of whom I have written on the RSD forum for her sake to share the story had full blown RSD develop as a young woman after knee surgery due to having been an executive chef. Just from the standing all shift long supervising the kitchen in a restaurant prior to the advent of rubber mats now in use to help the chefs avoid leg strain. Her case was so advanced and advancing, the wisdom of the time said amputate her legs, both, between knees and hip as they were gangrenous ultimately. To this day she suffers phantom pain from the removed limbs and is on doses of morphine I cannot comprehend. She bears a bright countenance as she trundles around on her motorized wheelchair being help and inspiration to others as she can.

Two patients, two different outcomes. Since we, being human, are all wired somehow differently, it is my hope and prayer for you that via SCS you may be able to gain much needed relief of your chronic pain. For my wife, the pelvic pain went the way of adhesions zapped by laser. For my Sis the pain is ever present and she is too far gone to have benefit of SCS [She and I have asked].

YOU are in my prayers Melly,
May blessings overflow you,
Mark56:grouphug:

:) Hi Mark, thank you for your replay, i hope you are having a good day!

Im yet again in my PJ's doped up meds with hot water bottles straped to my back and stomach going demented as i havent been able to get out and about cause of the pain :(

Endometriosis is a terrible condition that alot of people are unaware of and for the suffers it can ruin their lifes and many have a number of operations to get rid of it as it can recur at anytime, i am so please that your loved one is pain free after having it removed she is one of the lucky ones! I was diagnosed in 2002 following fertility investigations (laparoscopy) when myself and my wonderful husband were trying for a baby, after various other test we were told our only chance of having a baby was to have ICIS which would give us a 28% chance of a live birth. Unfortunatley the costs were to high for us to try and as the years went on my health became poor and my pain became worse and after 10 years of trying, and a number of hospital visits, operations and treatment we were told i needed to have a Total Hysterectomy (they left my ovaries because of my age) we were devastated at the time and found it very hard to come to terms with all our dreams had been taken away with no choice of our own, life is so cruel at times, but we are blessed in many other ways, i have a beautiful 15 year old daughter which i call my miracle baby (from a previous relationship) and my husband has two beautiful daughters from a previous marriage so we are very lucky and we count our blessings everyday.

Your sister Terri has been through so much it is so hard to comprehend what she (and her family) has gone through and what she is still having to deal with everyday My heart goes out to her and im sending her all the strength i have so when shes having a bad day she can us my strength as reserves. It seems to me that after reading some of your posts that you and your family are very strong minded and are an inspiration to many, sometimes when we are faced with all these challenges in our lifes it only make us stronger!

Take Care Mark Big hugs Melly :circlelove:

Dear Melly
 

Despite your pain, thank you so very much for being an inspiration for all of us sharing intimately the path you and your husband have trod to reach this place of shared fully recognized blessings. Tears come to eye reading all you folks endured seeking to bring life together through a shared chiild; and yet, not having that blessing come through, you have a nuclear family of five whom you both count as blessings. If you have bonded beyond the "step" family status of many families assembled thus, you truly demonstrate love, devotion, acceptance and recognition of special blessing. It thrills my heart to believe you and your husband have such a family. If only my brother could learn such a lesson from you.......

Thank you for your kindness regarding Terri. It is such a blessing to see her and that big smile she wears as she works to live life blessed and being a blessing. An artist, she paints t-shirts for oncology patients in hospital nearby so they may know a sparkle of joy, a bit of love, and a large helping of care..... it is just cool seeing her reach out to care for others even though she is in the valley of pain.

You are lovely in your outreach to others here, and a blessing to we who have the honor to read your words,
May you also know you are surrounded by a :circlelove:
Your caring friend,
Mark56 Great Big :hug:Z

abd. pain and the pump
 

well I am back after a year of still trying other things for the pain. Now I guess I will have my trial as soon as I get my psych eval done and insurance approval. It is scarey to me that there is no other way out of this nightmare of discomfort. Everyone here seems to be so brave to have gone on with tthe stimulator. It is easy to lose hope.

Sue