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

Hi all if i had it to do over again i wouldnt get the scs i am very unhappy with mine it does help the pain some but i am still on the same amount of pain meds that i have always been on since i got to be the proud owner of my rsd. I remember reading everybodys posts before i got mine. Before i got the trial i told the doc that i had alot of scar tissue in my back from two previous surgeries but he said that wont be any problem at all cause i know what i am doing boy i thot what a arrogant attitude cause other doctors i had seen were all concerned about all the scar tissue. then i talked to them about haveing a nero surgeon put it in and was told they dont do it any more antheiogists are putting them all in at the hospital i was going to. well when it came time for the trial and he was trying to put it in i was yelling about how painful it was finally after twenty minutes of this pain i told him to stop i didnt want it i couldnt take it anymore. then he said well i might as well stop i cant bet it past the scar tissue boy that didnt make me feel good then he said well i can put it in this other way that will only hurt a little bit and i asked his how is that and he said thru the cottle and i asked what is a cottle and he said like i was a dumb ** well thats your tail bone so he put it it the tail bone and he was right it didnt hurt and the trial one helped the pain when i went to get the trial out he didnt show up for the appointment and there were about six people there this is a training hospital and they were there to see it removed well only person there that had ever seen one removed was a nurse and she pulled it out was her first but she said she had seen it dont many times ya just pull them out.

Well a week later with more reading about the scs problem i decided i didnt want my generator in the back i thot it would be uncomfortable and hard to charge the batteries so i tried to call him but he doesnt return calls so i had to make a appointment and drive clear down there just to talk to him about where to put the generator and i told him i wanted it up front in between the hip and bellybutton and he said ok. then the day came for the permenant one and when i was getting on the table i told him my tail bone was still hurting from the temp one and he said we will worry about that pain later lets put in this perm one first then he said on u wanted the batteries up front right and i told him yes and he well that is too much work i wil move it up some but not that far it would take longer well now it gets pinched between my hip and ribs just sucks where it is but i guess it is better than in the back boy he is lazy.
well my tail bone is stil hurting and he wants nothing to do with the pain even told me to go away and dont come back said he dont know anything about back pain and what he did didnt cause the pain problem weil it is so obvious that it did ya cant believe a word they say....well since then i had a nero surgeon take it out of the tail bone and reinstall in screwing it to the back bone so the nerve is right on the end of the wire but the tail bone pain is getting worse and i dont have a clue as to how to get it fixed. I would try that pain pump i havetalked to people that have had it and liked it especially after they found the right meds for the best pain relief.........well live and learn...Alan

I'm so sorry you've been put thru all of this! It seems unthinkable that this guy would leave you out in the cold like this!

Have you thought about seeking legal counsel over this?
Or do they not hold themselves accountable since this is a teaching hospital? I feel very strongly that something should be done here.

Nobody should have to go thru what you've been thru!

Rae

I had the SCS implanted almost a year ago Nov 2011. The clinical trial wasn't a very good way to assess it because you're so restricted. It seemed to help though so I went forward. Three months out I began having pain in my mid back. I originally decided to go with the SCS because of chronic pain in my lower back and legs for over nine years resulting from an auto accident. I have been on Fentanyl patches, oral morphine and lortab (all at one time) on a daily basis the past nine years. I wanted desperately to not have pain and be off medications at least partially! I wanted to feel normal.

Three months I began to have pain and ignored it because I thought my body was adjusting. after a couple months I believe around five months after surgery the pain was becoming more intense and was daily and now now overshadowing the lumbar pain I have had for the past nine years.
Somewhere around month 8 in July of this year I was on the floor cleaning up an apply juice spill and when I went to get up I felt a burning and sharp pain at the surgical site and a hot, sharp intense pain around my rib. Almost like someone had just taken a knife and sliced around my rib very quickly. After that day the pain was so intense my meds increased and my mobility decreased. Then on some days I dont'know what it is I do but perhaps some form of movement? bending over? whatever causes it I don't know but suddenly my hands up to my elbows go numb and tingle just a bit and my feet up to my knees will go numb. The length of these episodes vary the longest being around nine hours. When this happens the pain is decreased. There is a weakness in my feet and hands when they are numb and I've fallen once during one of these times. When it passes the pain increases in intensity and it's back to the same old story.

I do not know what has happened but at this point I'm ready for removal. I've simply added a new level of pain to my life as if the original lower back pain wasn't enough!! There are days the pain is so much so that I sit and cry till I fall asleep. It has brought me to such a place of depression and hopelessness unable to enjoy my life. It's taken what little sense of worth I had as a mother and wife having so much pain, being a burden on my family and not being able to pull my own weight around the house.

I called my surgeon but they referred me to boston scientific and I"m waiting for a call from them which I have not yet received.
I'm praying and hoping for the best.

I just wanted to say thank you for sharing this. I'm so very sorry you've been thru all of this.
I see you've posted down below, so I'll post on the thread you are at.

Again, thanks for this

Rae

After two back surgeries, one with spinal fusion L4 & L5, then stenosis is L3, I continued having back pain to the extent that I could only walk about one block. If I did any activity, such as cleaning my house, I would by bent over double with back pain. Had an MRI, after which neurosurgeon told me additional surgery would be of no use and he suggested I do the trial SCS implant. Trial gave me around 95% pain relief, so went ahead with the permanent implant. Have met with the Boston Scientific tech a couple of times to tweak the settings; but we still don't have them quite right. Will need to work more on the settings to get it to my liking; BUT the pain relief is amazing. Last weekend, I went to an RV Rally at Daytona Speedway and walked around the exhibits - with NO PAIN. I did turn over wrong one night and had a sharp stinging pain around the IPG (battery pack implanted in my hip), but feel that was probably skin or hip tissue stuck to the surgery sight and breaking lose. Stimulation is still working fine. I will see the tech within the next week to have it checked and also do some more tweaking of my four settings. No regrets of having the implant as I can now climb a flight of stairs one foot at a time - where before it was a struggle to make it going both feet per step.

Now that is a great story!!!!
I am so happy for your relief from pain.
Don't forget to go easy...let yourself heal so everything stays in place.

all my best
Johanna*

Thank you for sharing your story!
I'm so happy for you that you are getting such good pain relief! Usually there are a few tweak sessions necessary to get it all right.

I sure know what you mean about those stairs! Going UP is total agony!

Again, thanks for sharing.
It's great to have you with us!

Rae

I have an SCS for Chronic Back Pain. I also have nerve damage in both legs as a result of bulging discs. I had a rhizomoty and my NS wants me to get more of these to try and get rid of some of the pain. I recall that it is painful, so I really don't want to go through any more of these. She wants to do fusion surgery after the rhizotomies. I am so unwilling to go through all of that. I will do my best to deal with the chronic back pain. I also have CRPS in my right shoulder as a result of two failed shoulder arthroscopies, one in which they cut out the A/C joint (resection). A rep from Boston Scientific told me at my last re-program of my SCS, that they could attach electrodes externally for my shoulder problem. Only problem is that is a W/C case unlike my back problem, and they don't even want to pay for medications or trigger point injections. Is anyone aware of the external SCS applications? Thanks for any info.

Best Regards,
Dave