Knowing disclosures as I do regarding medical procedures there must have been some disclosure to you regarding the risks involved by the principal surgeon, the anesthesiologist, the surgical facility in which the procedure was performed..... In the very least the psychological profiling which would have been mandated prior to the procedure would have been filled with questions determined to ferret your potential for realization of risks inherent with the procedure, its potential outcomes, your expectations.

Gently realizing you are, as reported, living life with intractable and horrible pain compounded by injury it is so very unlikely you could have been admitted to the surgical suite as the patient of the hour had you not signed off to statement after statement through which you were informed of possible outcomes. This I have lived so very many times as a patient, the language of the dire consequence potential risks is very nearly burned into my mind's eye.

Things sometimes turn out very much for the bad affecting us. I, for instance, bear permanent nerve damage which will prevent me from doing a good many things I used to know as taken for granted. For you, I so very much hope somehow, in some way, at some time, a means to resolve your situation will become apparent and doable.

I care

Hi ABrown..........I had my implant in my butt. The whole time it was in place I could NOT sit down. Having a BM was a big deal..
I believe the thinner you are the more of a problem it is.

Good Luck........Dawn

Hi there

Not sure if I sent the quick message right, I'm brand new here. If you get both messages and could reply to this one that way I will get notified. Sorry!!

Anyway, if you do get a chance I would love to hear how you are doing with your scs. I also have nerve damage in my legs causing burning pain and would love to ask you a few questions.

All the best,

Joe

I also have a SCS implanted and had to have it redone as it was to high in my mid region instead of below my knee. It has been in for about a year and a half. It really only helps take the edge off and that is it. My RSD in my left foot, ankle and calf has now spread all the way up my leg. They have talked to me about doing a prialt pain pump. I am trying to see what it is going to look like(as I am a visual person). Since you have had yours in a while are you starting to see any long term side effects??? Any information would be greatly appreciate.

Welcome!

I'm sorry to hear that your unit isn't workin up to it's potential. This has happened with a few of the other members (regarding too much stim in mid region). With some tweaking and/or revisions, some of them have been able to get rid of that unwanted stimulation in abdomen/stomach.

Lostmary hasn't posted in quite awhile, so I'm not sure if she will see this post.
Here are some posts from other pumpsters

Here is the testimony of Bobinjeffmo's pain pump:
http://neurotalk.psychcentral.com/post701979-14.html

Here are some post references, both good and bad, to hopefully give you a realistic array of experiences:

http://neurotalk.psychcentral.com/thread144925.html

http://neurotalk.psychcentral.com/sh...945#post841945

http://neurotalk.psychcentral.com/post778075-7.html

Another thing you can do is use the "Search" feature near the top of the page in the bar that runs across the screen (3rd option from right). Type in 'pain pump' and it will bring up prior posts and discussions on these.

Hope this helps!
Also, I'd like to invite you to come on down to the active posting from the whole crew. Right now, we are up in the 'Sticky' section, which is mostly information and polls. Once you exit out of this dialogue, you'll see an option down below to start a new thread of your own and you'll get tons of great feedback from many caring members.

It's great to have you! Hope you stick around.
Just holler if you have any questions ok!

Rae

Hello to everyone! I'm sorry for all of your issues. I hate that there are many stories about pain and suffering though each one is different. This is my story.

I was dx'd in 1997 with MS after having many problems with symptoms from the time I was very young. I couldn't tell you what and when my first symptom was, but I can tell you that I believe that it all started with the mumps when I was 4 or 5 y/o. after that I can remember complaints of what I described as headaches behind my left eye when I was about 7 or 8 but after that I believe I had foot drop in high school and am undiagnosed case of optic neuritis when I was 18 which was dx'd at the time as a migraine when I went to the er. At the age of 19 and 20, I had problems with trigeminal neuralgia, and then at the age of 26,I started having another optic neuritis episode and numbness in my left arm and leg. I was dx'd with MS in 97. Years later after several relapses I started noticing what I called an aching in my legs that I I was given tramadol for and that worked for me for many years, but as my pain increased my dosages increased and by the last increase my neurologist decided to send me to a pain management Dr. I've always had a fear of becoming addicted to pain medications and I explained that to my new Dr who immediately told me about the pain pump and I was ready to get it put in immediately, but was told that I'd have to do the trial first so in the latter part of November I had the trial done where I had to go to the Dr's office at 7 am, which btw, is attached to the hospital and had the trial done and then transferred to the hospital where I stayed and was monitored by the nurses for the rest of the day and was sent home by early evening. That day I had the trial done and by the end, I knew that it was for me, because I had not been without pain like that for a very long time. The next week I went back to the Dr's office and he put the referral in for the surgeon who was to perform the surgery and waited for them to contact me. Once I got the call, they had an opening for the following day so I went in and told them that my only wish was to have my pain pump put in for Christmas. By this time it was already mid month and so he sent me to the front to see if he had anything avail prior to Christmas and by a miracle there was an opening for the 23rd of December, so I was scheduled. I went in to surgery the early morning of the 23rd and I got out of the hospital on the 24th and I was taken to my mother's house where I spent that evening and the next day with them recovering. The only problem I have had from the surgery is some weakness in my left leg along with some pain in my hip. The Dr's believe that it was just due to swelling at the site where the catheter was placed at the base of my spine and gave me steroids to help reduce the swelling. As of date, I believe that I've experienced a relapse of my MS since the surgery because I've had some other things that have crept up including some vision problems, ringing in my right ear and more weakness and sensation issues in my right leg this time. As for the pain, it increased after the surgery but I called my pain management Dr who, unlike the rest of you whom have had problems finding a Dr that would manage your medications after your surgery, mine is the same Dr that referred me to the surgeon who did the surgery, so that once the surgery was completed, I could go back to my original Dr and have him so all of my fills and manage the pump itself. Anyway, back to my story, I called my Dr and he got me in within a couple of days and he increased my medication by 20% and said that I should expect to start noticing something within a few days and several days later, I did notice that I could go longer between my methadone doses so that I can begin to start my withdrawal process from the methadone. Currently I'm on methadone, Lyrica, percocet, and now the morphine. My hopes are to be able to reduce all of that to only taking what I need to take to cover any brake pain that I may have. He told me that if I found that I needed another increase in several weeks to contact him again and he would get me back in and increase my dose. I'm currently on morphine in my pump and if things continue to go well, as stated earlier, I'll continue to withdraw from the methadone and then I can hopefully get back to my life! I'm disabled due to the MS, but at least i can enjoy what I was enjoying before this pain got to the point that I needed a pain pump. I'm a huge fan of riding motorcycles and I have a 2004 Harley Davidson sportster XL1200C which I can't wait to get back on and I am also a lover of horses and I enjoy riding for pleasure, so I'd love to be able to get a chance to go riding again as well. Btw, I'm glad to have finally found a group of people who also have or are considering to have the pain pump. I'm a member of several MS pages on Facebook and have yet to find someone who has a pain pump. It'll be nice to be able to share experiences with you all and to hear each of your stories as to how you all came to your decisions about having it done. Seems like my Dr from the ones I've read so far, it's the only one to have offered it as a first choice instead of offering the scs as a first option. I'm glad I chose the Dr that I did as well, because he is not on my insurances list of Dr's so I decided to go out of network in order to see him, so I'm glad I did! Seems to me that a lot of little things went right in order to lead me to this miracle! I truly believe that this is my miracle!

I have had 2 scs surgeries both causing 90 to 100 day flare ups. I will never ever forget how much pain the scs surgery and programming had caused me for the rest of my life. they never worked. during the trial i might of achieved 10% reduction in pain at most. my doc would not give me a pain pump without trying the scs first. the dr.'s get a nice bonus check for every scs they put in from the company they use. Advanced Bionics,ANS,and Medtronics compete against each other for business. I had advanced bionics put in twice. i have had several opinions since then and the pain docs say advanced bionics is their first choice and medtronics is awful(at least for the last 8 years or so) but they love medtronics pain pumps(this might be cuz its the only programmable pain pump made on the planet).

as of 2009, the new standard during a trial is 75% pain relief or you dont get the scs put in. it used to be 50% pain relief. about 50% of scs's are not being used after one year of use because it doesnt help them anymore. i think that is why they want 75% pain relief now.

i know very few people that scs's worked on but for them it allowed them to keep working or go back to work so it was worth it for them.

i am currently in trial for pain pump. if this works, i will get the scs taken out because the surgeon did not put the generator in deep enough so i battle sores from the generator trying to poke out of my skin.

There are SO many new folks coming to this forum with their experiences, I thought I'd bump this poll up to the top hoping more will take part in it!

Thank you everyone for sharing your experiences!
It is such valuable information!

I’m a 21 year old male that has a severe form of Neurofibromatosis that is rapidly increasing that causes tumors to form deep in my body all over that causes pain. I’m loosing all function of my arm and leg due to it being nerve pain and damage. I was an athlete but now I am bed ridden. The docs want to put in an intrathecal pump in me to help with the horrible pain and because I’m on very high doses of oxycontin and oxcycodonne. I’m scared to have it in because I’m a skinny guy and I’m wondering if it will even help much or what kind of pain meds are the best to be straight in blood for anyone with horrible nerve pain? I pushing to do this hopeing i can get back to a somewhat normal life and wondering if it hlps others with neuro pain?

I am SO sorry to read what you are dealing with !!
Here are a couple of suggestions that may help you get better responses, as I'm afraid not many will see your post here, since it is tagged at the end of a different thread.
I would encourage you to start a new thread here at the SCS forum and it will stand out more...... That way, you will be apt to get more responses...
Just ask if you need help in how to start a new thread. At the top left side of the page is the "new thread" to click on.

Also, here is the direct link to the Peripheral Neuropathy forum, click on:

http://neurotalk.psychcentral.com/fo...aysprune=&f=20

The PN forum is very active and you may get good feedback there as well regarding your nerve pain.
Also, I will send a message to a member here who has the pain pump and hopefully she can give you some input as well.

Hang in there! You certainly are not alone!
Rae