Wise and Nurses- I'm approaching rigor mortis!

[David Varner Jr.]

This is follow-up from my post last year about my increasing "tone." It is accelerating rapidly and I feel like every muscle from injury level down is in constant state of isometric contraction. I am a physician and am a C6 quad, incomplete, three years out. I don't have involuntary spasms. I am using baclofen pump (no help). I have been through Dantrium, Valium, and now accelerated doses of Zanaflex which gives mild relief for about two and a half hours. Every innervated muscle below my injury level is involved. Since I can feel my rectal region, the constant contraction of my sphincter muscles is particularly painful. I have evaluated reactionary causes like UTI, stones, other infections, skin, pelvic bone issues, silent fractures, etc. and nothing is there. I've looked for hormonal causes in vain (I'm taking testosterone shots). MRI of spine twice in 6 months shows no syrinx. MRI of pelvis is negative. Is there a neurologist/neurosurgeon "guru" of spasticity out there? I am from Georgia, have been through Shepherd, but this is beyond rehab expertise. Symptoms are worse daily, any ideas?
David

[This message was edited by davidjr on 07-31-03 at 02:39 PM.]

[mikek]

David,
I know the feeling very well amd have had it for many years. I had the baclofen pump and found it didn't help.So I had it removed and then eventually got off oral baclofen.I have a heated pool and that really helps for a short time.I always sleep with my knees bent and that has helped with the morning stiffness.

Have you given 4ap a try ??

Mike

[David Varner Jr.]

Mike,
I forgot to mention I have tried 4-AP, in a
compounded version. I had heightened (almost
irritating) sensation in bladder and rectum,
as well as mild agitation. Thus, I discontinued that. One day I will try the SR version when it comes out.

[SCI-Nurse]

David, although you did not mention Baclofen, I assume you have also tried this (orally)?

Have you been evaluated for a baclofen pump? Many people who have refractory spasticity have found this to be a satisfactory answer. As a physician, I am sure you know that it would be critical to find the right physician to both do the evaluation and surgery and follow up care. I am sure that your physician at Shepherd could help you with this. Have you contacted them?

(KLD)

[David Varner Jr.]

KLD,
As I mentioned in my post, I am currently on a baclofen pump which I've had for over a year after taking oral baclofen to the maximum. I knew that the baclofen pump (and baclofen) are very good for involuntary spasms, but their benefit w/ "tone" (constant muscle contraction) is sporadic at best. In my case it doesn't work. The rehab medicine and orthopedic doctors at Shepherd are excellent, but I have not come across a neurologist or neurosurgeon who has this as a main focus of interest. They are also continuing to help with this.
David

[alan]

Originally posted by davidjr:

KLD,
As I mentioned in my post, I am currently on a baclofen pump which I've had for over a year after taking oral baclofen to the maximum. I knew that the baclofen pump (and baclofen) are very good for involuntary spasms, but their benefit w/ "tone" (constant muscle contraction) is sporadic at best. In my case it doesn't work. The rehab medicine and orthopedic doctors at Shepherd are excellent, but I have not come across a neurologist or neurosurgeon who has this as a main focus of interest. They are also continuing to help with this.
David

Are you sure the pump catheter hasn't slipped out of place? If it has, you wouldn't be getting the full effect of the baclofen.

[Sue Pendleton]

I found that 4-AP helped loosen my contracted hand. Sure beat Botox shots all to hell. But I do know the side effects that can hit so it's whatever works for you. Just one thought I had, were you injured in a way that you might have incurred a minor, and undiagnosed, head injury?

Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."