2 replies to this topic

[tomsov]

I have no idea what this is used for. all i know is if it is practical for me how should i go about asking about is. what symptoms does it help, what are common issues. I am a t12 para and i have only heard about this through this forum. does this help spasms? is this a pain management system? i am looking for any bit of information that could be directly related to me. i am on a regiment of pills, including NORCO, 2 pills 3 times a day, DITROPAN 2 pills 3 times a day, and Aleve two pills once a day. if this is a replacement id like to know. if my regiment is what i have to look forward to then i guess ill get used to it. thanks

tom

[Erich]

Hello~

I am 41 years post injury, T6/7 complete.
Nine years ago my Physician suggested the intrathecal pump and I had one implanted in the Spring of 2002.
Surgery went smooth, spent a night in the hospital and on my way the next day.
I had been taking oral Baclofen for 20 years prior to this at a dose of 80 mg per day.Baclofen was the best choice for me, having tried Dantrium, Valium, and something else, long lost to memory.
I had gone thru various phases/stages of spasticity from toe-tapping to being thrown around in my chair, the Baclofen helping somewhat but not as satisfactory as I desired. The pump was amazing in how it relaxed my legs to the point where I could now stretch them out, and it knocked my spasms out completely.
I've always been phyically active and I've kept myself in decent shape. That being said, the pump at it's current size back then really protruded from my abdominal area. If I wore sweats or really loose fitting pants I was ok, but anything tighter aggrevated the implant site.
I was getting into my inground pool, this a year post surgery. As I was lowering myself from the diving board onto the pool deck I started to swoon as the incision site where the pump had been impanted, ripped open and I could see the gleaming metal body of the pump!
I had it removed, a shame because it really worked well for me. The problem was, I was too slender in frame, the pump was just too big for my physique. I considered the newer, smaller model, but it would have stilled protruded and probably erored thru eventually. If body size in not an issue, I would recommend the pump, it does work.
I went back to oral Baclofen, with no rebound effect. I take 60 mg per day and am doing well with it. As I've gotten older my spasms have gotten less. I need to point out that my muscle mass in the lower extremities has decreased considerably. Less muscle and more fibrous tissue.This may explain the lessening of spasticity, I really don't know. My Physiatrist gave me this much information. I am comfortable enough, but if it ramps up may consider a pump one day if the sizing isn't an issue.
I wish you well, and that you arrive at a sound decision.

All the best,
Erich

[darryl]

I'm also a T6-7 complete of 40+ years, Ontario Canada. Always had 'good spasms', kept the bones and circulation excellent and preserved some abdominals which certainly assisted in my bowel function.Four years ago I was to have surgery to repair bilateral rotator tears ( good old basketball for 25 years will do that ), but my spasms were getting to the point it was difficult to drive, sleep, and relatively everything in between. Tried all conservative treatments, then two rounds of Botox, and no results. Finally did the ITB implant in Dec 2009, and have yet to obtain a decent balance. spasms have gone down by approx 30% however between the pump itself being almost 10oz , located over the ascending bowel, plus the sedating effect of Baclofen caused me to lose any abs I had.....short of the long is that 2 weeks after surgery my bowels went from great to nil. Lost all motility and my normal 15 minute bowel routine went to a minimum of 1 to 2 hours in the bathroom every night, and then only transient and inconsistent results, again all conservative treatment attempts failed and to make it worse my physiatrist told me it's 'coincidence' and the pump had nothing to do with the bowels.....the neurosurgeon told me the same thing in my pre-op assessment, that was my main question to him "will the pump in any way effect the bowel"? NO he said. Well in early 2011 I was contacted by a medical resident, who happened to be under my physiatrist, contacted me wanting to use my case as a basis for a position paper she was doing for presentation at the 2011 Canadian Association of Physical Medicine & Rehabilitation
conference. Her paper provides and interesting conclusion, that being that ITB HAD an effect on bowel function and this aspect should be included in the 'Informed Consent' process during the pre-op assessment. I would appreciate and welcome any and all comments from ANYONE, recipient patients or other involved proffessionals, who have experienced negative effects from the ITB, especially in the area of bowel function. The position paper is authored by Daniela Lanc, and as ironic as it may seem, is co-authored by my own physiatrist (who negated any ITB effects), Dr Keith Sequeira. Please visit the following link, http://www.capmr.ca/...m_content&id=89
go to "2011 Conference Proceedings" and view article number 38, "LIFE‐ALTERING CONSTIPATION FOLLOWING INITIATION OF INTRATHECAL BACLOFEN INFUSION THERAPY FOR SPASTICITY MANAGEMENT" Please provide any feed back, I intend to pursue this topic endlessly in hopes of providing any future potential ITB patients with ALL information they should be privy to prior to consent. On a closing note, my pump also protrudes, and this bulk combined with the abdominal muscle loss has caused me to go from a healthy 34 inch waist size to a 38 inch, and that's getting tight, at the least a local charity did benefit from a large volume of dress, casual and jean pants......can't bill for replacement cost either! And...GO NYGIANTS!

Edited by darryl, 24 December 2011 - 11:08 PM.