Dx: Rare progressive neurodegenerative disease called Multiple System Atrophy (brain rot, autonomic system failure, neuropathic pain and a whole lot more). Added improvements: Intrathecal pump and a spinal cord stimulator and a new brand new power wheelchair with shiney horn,.
Medications: Sinemet, Requip, Klonopin, Baclofen, Provigil, Lyrica, Fentanyl patches, Lidoderm patches, Dilaudid, Fentora and Zofran
Just thought I would chime in on the scs debate...........
I had one put in 7 months ago, the surgery is tough and the leads have to be kinda perfect. 4 and a half hours later I was done with my first so called trial and as soon as I was in the recovery room they tried the unit out and all the wires had shifted and the scs unit was zapping my ass big time where we had to shut it off. I lived without using it for the next friday there was another 4 and a half hour sergury all over again. They put 4 wires up my back, and put 8 wires down my back and to make a long story short, none of the socalled programs worked well enough were you would say I'll use that one . Very uncomfortable unit after a while. I could'nt get it removed fast enough. I only got rid of it 2 months ago and it's a real relief its out.
I am only one person with my own opinion, this definatly should not make anyone not at least look into this procedure. I'm sure there are many positive cases as well.
Best of luck everyone
I had a Medtronic Intrathecal Pain Pump implanted June of 05. Its the best thing that could have happened to me. I do not tolerate oral medication well at all, thats all drugs, not just pain meds. It went something like this for me, the ones that helped I had to take to many to get the pain level down, then if we found something else either I would have a full blown reaction or the side effects would get me. I tried morphine, oxycotin, oxycodone, fentanyl patches and it was just useless. Thats just naming a few I was tried on. Another problem was I had so much pain in so many different parts of my body, that my dr said no way meds could touch all that pain.
My dear dr totally forget I don't tolerate morphine, so what does he put in my pump, morphine. So, out came that. I am on a what I call a drug cocktail in my pump. I am on Dilaudid 15 mg/ml concentration level, Clonidine 150mcg/ml, Sufentanil 15mcg/ml and Bupivcaine 15mg/ml. The drugs are infused 24/7 and my doseage in 24 hrs is 3.645mg. Oh, I still have some pain, but its very tolerable and when it kicks up its with my back, I am able to get it right again with my muscle relaxers. I tend to overdo alot and get in trouble with my back. I have found my muscle relaxers are far effective with the pain than my 2mg Dilaudin pills I have for BT pain. By the way, Dilaudid is a very old pain drug and has less side effects than most pain relievers.
I am on way less medication than what I took a day orally. And I mean way less medication, my pain told me I would be and at the time I really was not sure. He made a believer out of me. One of my big problems is I have a very high pain tolerance and it always got me in trouble. I hated taking pills and by the time I would give in and take one alot of times it was too late to give me relief.
I do not walk around in a fog or goofy or out of my mind. What I love is no clock watching, no high and no lows its an even keel. I drive a car just fine. I play with my 2 1/2 yr old grand son and its great that I can do that, w/o the pump I would not being alot with him.. You don't sit around and nod off everytime you turn around.
You do a trial on the pump. You will know during the trial if the pump will work for you or not. You have to go thru the physch testing for the pump, Remember in the very beginning they start everyone out in a lose and increase it as needed till the pain is under better control. For me its been a life saver. Susie
Good morning all,
This is a report of a scs trial completion as of today.
I am on the last hours of the trial and this is what I have to report to all that are concerned.
I began my trial and for the first 24 to 36 hours, I completely observed all of the pm docs recs. and found that the scs did reduce pain levels about 30% to 40%. The drawbacks at this point are severe muscle spasms in my mid back and migraine headaches which I consevatively medicate. This was while lying in bed, resting and sitting in a lounger. Since this behavior is less likely to be conducive to actually "living", I chose to get up and do some light moving around. You know, going to the grocery store and walking around. The scs did assist and still does assist in mobility. It alone has extended my standing and walking time 3 fold. After about the 36 hours mark, I began to notice areas as high as my rib cage were being stimulated whereas the areas of pain in my low back and hips, the back of my left leg all the way to my foot and the back of my right leg to my knee were being were not being adequately addressed. Coughing and sneezing bring anohter issue. In my particular case, I was extremely fortunate to be holding on to a shopping basket when a small series of dry coughs hit. People looked at me as if I were falling down drunk. Hell, I don't even drink. Point is, I nearly fell several times because my legs became over stimulated and I could not control them. Lying flat also increases stimulation for whatever reason. On top of that, I am a long time migraine sufferer with migraine frequency one to two times a month "maybe". I have had two migraine headaches this week
It does sound like you have been discussing it with a salesman. I went for a consult for scs and asked the rep some very pointed questions about the frequency of lead migration, about the change in stimulation patterns from trial to permanent implant and why that seems to occur frequently, about other problems that I have read from others in regard to scs, and she either blamed the patient for "not following directions" as to why the leads migrate, or improper measurement by the implanting surgeon ( although she claimed that was the least likely reason). In regard to the change in stimulation patterns , she also blamed that on the patients and their moving, rather than it being an issue with the device or the leads.....having another surgery sounds rather simple to place paddle leads, but it's not their bodies that are being cut open again and you have to fight with the doctor for months to get that to occur, assuming that you have a compassionate doctor. Many scs implant doctors seem to feel that once you have one, the need for medication is no longer, which seems to be furthest from the truth from what I have read and seen posted by others.
My best recommendation is to do your own research. For John, have you ever been diagnosed with arachnoiditis? From your description of the water running down your legs /feet , I was just wondering?Anyway, good luck with whatever you decide to do.....I'm sorry that you have to deal with this to begin with.