[dshue]

I've a maddening situation, in which I'm thinking getting some poison shot in to me may do some good.

While I've full body SFN, a while back, as I've mentioned here before, I had a diagnostic lumbar puncture performed. Big mistake. My sympathetic nervous system is just way too wound up, and since the LP I've been afflicted with what feels like a muscle spasm in my skull, just on the right side, reaching to the top of my head, sometimes going down into my face, again only on the right side. My throat also constricts, sometimes scarily so, again just on the right side (the other of end of my spine has my right glute regularly spasiming, but that I can live with). Any physical activity greatly exacerbates the problem, and has left me incapacitated occasionally over the last nine months or so.

This pain is at times worse than the burning I get around my body, but it's interesting, there is always one of two going on (I'm just lucky I guess). The pain gatekeeper only lets one signal into my brain at a time.

So we were thinking that a few strateically placed shots of botox might be of benefit. My doctor is serious research guy, not a cosmetic surgeon type, at a major hospital. I initiated this idea with my neurologist, and the botox guy sounds like he knows what he's talking about.

What I'm asking is does anyone have any experience with botox. If so, did getting the shots make things better? Did they make things worse (a scenerio which weighs heavily upon me)?

-- Dennis

[nide44]

My son, a quadriplegic of a little less than 3 yrs, has severe spasms-regularly.
He opted to take the botox shots to try to relieve them.
He turned out to be in the 10% who are adversely affected and was severely incapacitated and lost the progress he had been making for almost 2 yrs. He lost over a year's worth of hard work in PT & OT to get him semi-independent. He thught a 90%/10% shot was worth the risk, but wound up behind the 8 ball in the 10%.
Be sure you know the negatives before you have this procedure done.

[mrsD]

Originally Posted by nide44

My son, a quadriplegic of a little less than 3 yrs, has severe spasms-regularly.
He opted to take the botox shots to try to relieve them.
He turned out to be in the 10% who are adversely affected and was severely incapacitated and lost the progress he had been making for almost 2 yrs. He lost over a year's worth of hard work in PT & OT to get him semi-independent. He thught a 90%/10% shot was worth the risk, but wound up behind the 8 ball in the 10%.
Be sure you know the negatives before you have this procedure done.

I am so sorry to hear that, Bob. That has to be awful and very discouraging!

[pabb]

Originally Posted by dshue

I've a maddening situation, in which I'm thinking getting some poison shot in to me may do some good.

While I've full body SFN, a while back, as I've mentioned here before, I had a diagnostic lumbar puncture performed. Big mistake. My sympathetic nervous system is just way too wound up, and since the LP I've been afflicted with what feels like a muscle spasm in my skull, just on the right side, reaching to the top of my head, sometimes going down into my face, again only on the right side. My throat also constricts, sometimes scarily so, again just on the right side (the other of end of my spine has my right glute regularly spasiming, but that I can live with). Any physical activity greatly exacerbates the problem, and has left me incapacitated occasionally over the last nine months or so.

This pain is at times worse than the burning I get around my body, but it's interesting, there is always one of two going on (I'm just lucky I guess). The pain gatekeeper only lets one signal into my brain at a time.

So we were thinking that a few strateically placed shots of botox might be of benefit. My doctor is serious research guy, not a cosmetic surgeon type, at a major hospital. I initiated this idea with my neurologist, and the botox guy sounds like he knows what he's talking about.

What I'm asking is does anyone have any experience with botox. If so, did getting the shots make things better? Did they make things worse (a scenerio which weighs heavily upon me)?

-- Dennis

what did they find when they did a MRI of your brain?

[dshue]

Originally Posted by nide44

My son, a quadriplegic of a little less than 3 yrs, has severe spasms-regularly.
He opted to take the botox shots to try to relieve them.
He turned out to be in the 10% who are adversely affected and was severely incapacitated and lost the progress he had been making for almost 2 yrs. He lost over a year's worth of hard work in PT & OT to get him semi-independent. He thught a 90%/10% shot was worth the risk, but wound up behind the 8 ball in the 10%.
Be sure you know the negatives before you have this procedure done.

I am sorry to learn of the issues with your son. Thank you for sharing such information.

I guess I've got to do a little more research.

[dshue]

Originally Posted by pabb

what did they find when they did a MRI of your brain?

I've had three in the past year, with an MRa too.

Everything looks good they tell me.

[nide44]

Originally Posted by mrsD

I am so sorry to hear that, Bob. That has to be awful and very discouraging!

For the family it was like getting kicked in the head by a bull.
But him.......He's a tough one. He's working hard and getting back what he had lost to the Botox. He refuses to let anything get in his way and is fiercely independent, & is working hard to get there physically.
He still needs (and may always) the aides to come in to get him out of bed, put him into bed, bathe him, etc, but wants to get back to where he can shave himself, hold forks & spoons (use of knives many never be in the future) and get back into the harness that holds him up so he can take a few steps down the hall. That's where he was (semi-walking in the parachute/harness @ 'Kennedy-Kreiger' outpatient therapy) before the Botox ruined that work.

[daniella]

Bob I am so sorry too. I hope better times ahead for you and your family.
With any treatment and I know some one for rsd who is getting botox but anyhow I really think you need to weigh the pros and cons. I know I would not be willing to do this but everyone is different but just really like you say researching to make sure it is right for you. Were there any other options that you would try?

[aussiemom]

Hi
I've gotten Botox shots in my scapular area twice. I'm currently on my second round of 14 shots all over that area, and in my neck. The first round lasted about a year, I'm going on 5 months now, and still doing fairly well. My PM does this, and does it well. My major issue with the Botox is about 2 hours after being injected, I feel like I have a major head cold. This lasts 2-3 days, it really is annoying.

I'm starting to question myself again about this. It does work for me, but each time the head cold thing gets worse. I don't notice any other side effects, but this does worry me a little bit. I will not do a steroid shot, as I am diabetic. Next time I'm in to see her, I'm going to ask if there are any other options. I'm ready for a pain pump, but for now she says no.

[Raglet]

Botox may be on the horizon for me for the spasticity in my hand. I tried norflex (like baclofen) which really helped with the spasticity, but the side effects were atrocious! So, I would like to try botox as it is more limited in it's effect.

My understanding is that botox is best for limited areas so I am hoping that my hand would qualify. I do have other areas of spasticity, but if I could just get my dominant left hand working properly again I would be very grateful.

cheers

raglet