Spasticity

[CHIQUITITA]

I am one year post stroke and having a serious issue with spasticity to the point I am unable to walk normal. Walking is very difficult and awkward. Can exercise alone help with spasticity? So far exercise has not helped! How long before I can walk right?

[fking]

Welcome to the message board, I have the same problem. My doctor changed me to Lyrica from baclofen. I still have problems walking unlike I was 2 years ago.

[kanderson]

hello and welcome to our great website. recovery with walking is different with everyone. i am unable to walk without a cane and afo and my stroke was 5yrs ago. my affected side has alot of spasticity at times, exercising helps but sometimes not enough. perhaps your doctor or therapist could help you with meds. keep working on your walking but be safe. hopefully you will see improvements soon. keep posting to let us know how you are doing.

kanderson

[dstraugh]

CHIQUITITA,

 

I am 2 years post. My doc and insurance company finally agreed(surprizing feat in itself) for me to take Robaxin - 750 mg 2X/day. It takes the edge off of the spasms.

 

I have nasty spasms in my bad foot and calf and shin (left leg). The spasms really kick in at night once I relax in bed. The Robaxin has helped.

 

Also, in the mornings, my left arm and leg are so stiff that I can hardly motivate. The Robaxin helps in the motivating. I walk with an AFO and also have a hemi-walker and quad cane. I utilize hemi more as I feel more secure.

[lisas]

:welcome: Chiquitta,

 

Rachel has terrible spasticity and dystonia. We've tried 7 different oral meds. She has also had Botox. It didn't help that much, but has helped for some other people. We're going to a nuerology group on Tuesday ourselves to see if there are other kinds of things we can do.

 

Good luck to you. :hug:

[jdmmdm]

Hi,

 

My name is Joel and I am 15 months out. I have another suggestion and that is to ask your doctor about

 

a baclofen trial. I had the trial....it took away the tone and spasticity (if only for a few hours) and I will

 

have the more permanent pump installed next Wednesday. It may not work for everyone (some people

 

use their tone to walk), but you will never know unlil you try......oral meds, Baclofen & Zanaflex make

 

me a zombie unable to function during the day. You see, I have figured out that my case is all about

 

tone and spasticity....get rid of the excess and you might be surprised what you find under all that.

 

The neuro surgeon is going to install the devise high in my back so that I may see improvement in

 

my arm as well. Anyway, it was wonderful to experience the way my leg used to feel ( except a little

 

weaker) before the stroke. I will let you know how it goes.

 

Joel

[Danny D]

Chiquitata,

 

I am with Joel on this. I am almost 7 years out and my spasticity is my biggest challenge. While I do walk, the discomfort and/or pain is always with me. I have tried all the medication and they make me a zombie. I am on lyrica and it takes a little edge off the pain, but doesn't help the spasticity. I pay out of pocket for it, as the insurance folks don't recognize it for stroke.

 

I have not been able to talk my Doc into the pump test because I am "not bad enough", but I will continue to push.

 

Joel, good luck with yours. Keep us posted.

 

Danny

[tom71]

I have the pump,it has definately helped my leg,my surgeon also put mine as high as possible in the spine so that I could see some benefits in my arm also,but sadly to say my arm,really isn't getting any better.

 

God Bless& Good Luck,

Tom

[kathyandlucky]

I AM 5 YEARS OUT. I USE NORTH BIOMAGNETS FOR PAIN. I AM DOING KOREAN HAND THERAPY FOR EVERYTHING ELSE. ALL OF THE PILLS MADE ME SICK. WHAT I AM DOING IS ENERGY HEALING. I SPENT THE LAST 5 YEARS RESEARCHING METHODS. I AM 78 YEARS OLD AND J CANNOT FOOL WTH ANYTHING THAT WOULD RULE MY BODY. I FELL AND BROKE MY HIP IN 2003 AND THAT WAS IT WITH PILLS. HERE IT IS: WALK; KOREAN HAND THERAPY (TYPE OF DO-ITYOURSELF ACUPUNCTURE) THEN MASSAGE ON HEAD, NECK, SPINE AND ARM AND LEG. THIS IS JUST ABOUT THE BEST THING YET. ENERGY AND YOU ARE NOT FLAKEY. (SPACED OUT)

[Danny D]

Tom,

 

Tell me a little more about your experience w/ the pump. Did you do the pre-test? What were your issues before the pump? Are you more mobile now; in less pain?

 

I am doing all the research I can in order to conveince my doc that I should at least have the pump.

 

Danny

 

 

Joel,

 

Be sure to report on your progress with the pump

[pprovost]

Hi,

I am 10 years post stroke and I investigated Botox injections as as way to control the spasticity. I did not tolerate Baclofen nor Zanaflex very well and my insurance covered the Botox so my neurologist hoped that it would work. But after 10 years my muscles have probably atrophied so much that the effect of the Botox is minimal at best.

 

The best advbice i can give anyone who is bothered by spasms when trying to sleep is to take extremely good care of your feet. If you develope corns because of pressure on your foot from your shoes. the corns can become very sensitive and trigger foot spasms. I found a great footcare clinic in my town where I am getting my feet cared for by a nurse who is specialised in footcare. A great shoe repair shop sees me regularly because my shoe size has gone from a 9 AA to a 9 D in ten years . My doctor says it is inevitable that as we age our feet get flatter and wider but paralysis and muscle atrophy will cause the small bones in your feet to spread out over time and this is why foot problems need to be prioritized.

 

Hope my experience is helpful

 

 

Pat

[jdmmdm]

Hey Danny and all interested parties,

 

I went in Wednesday and had the pump installed...still a little sore but tolerable. I will have to say that I was

impressed that it was outpatient surgery. Medtronic, the maker of the device, flew in a lady from Jacksonville

to program the pump...they installed the catheter at T-5 to see if they can get my arm to loosen up. The

device is set initially, at least in my case, at 50 micro-grams, and they will gradually increase the dose

once or twice a week until the dose is right. The bill was somewhere around $32,000 and Workman's Comp

paid for it....a friend had the same procedure recently and his private insurance bill was $43,000. We are

all in the wrong business, huh? In the meantime, I am just waiting for the right dose. Any questions, please ask...it makes me feel useful to help someone.

 

Joel

[Danny D]

Joel,

 

Thanks for the follow up. I hope all will go in your favor. Please continue to keep me poste. I see my nuerologist in early August. I'm trying to put together all I can to convince him to authorize the trial.

 

good luck to you,

 

danny

[pprovost]

Hi Gang!

me again :_) I am now sereiously considering the pump because Botox just didn't work and I don't tolerate the oral treatment. it is summer and I need my mobility more than ever because I enjoy being outdoors when the weather permits. Spasticity causes me trouble to fall asleep at night and the spasms are quite painful at times

 

I will check with my doctor next time

Pat

[Danny D]

Joel,

 

How is it going with the pump?

 

danny

[preluki]

I had botox treaments at the VA and that really helped, like many, I took muscle relaxers, and that made me hallucinate and fall. I no longer take botox, very little spacisity. Now I just do streching excercises and that helps too. I do have some spasms in my leg when I go to bed, but that is not too bad.

Hope you find something that works for you.

 

Doug

[jdmmdm]

Hi Danny, Tom, and all my friends here at StrokeNet,

 

Sorry for the slow response about my experiences with the baclofen pump but here is the update. I had

the pump installed a couple of months ago (previous post). The outpatient surgery and getting over the surgery

was quite frankly, tough. This formerly big, bad cop was left wondering if I had made the right decision. But all

of that is done and I consider myself fully recovered from the surgery. Anyone considering the pump should

be aware of the following as I am sure the other users of the pump can attest to.

 

Don't expect instant results like you did in the trial. The dosage is started small and increased in small amounts

until the desired dosage is found. You must be patient. I am just beginning to experience benefits after being gradually

increased from 50mg to 275mg. You will know when you get there because in most cases toes stop curling (a dream),

painful spasms should decrease and the general excess tone and spasticity will go away leaving a normal feeling, but

weaker lower extremity, which you must work hard in therapy to strengthen.

 

When you read the Medtronic literature, you are led to believe that there is benefit to be had in your arm as well

as your leg. Not in my case, at least yet. I have yet to talk to anyone who noticed a reduction in tone in their arm and

my doctor told me not to expect it.

 

All in all, I am sure that I made the right decision and would do it again in a heartbeat. By the way, if it is important

that you look like Charles Atlas, forget the pump. I look like I have a can of Skoal chewing tobacco just under my skin

in my abdomen. And if you travel by air a lot, when you go through Security, alarms sound and lights flash and the

officers have the deer in the headlights look when you show them the 5 inch scar on your belly.....so count on extra time.

 

Finally, will it help you? DO THE TRIAL! It won't lie. If your doctor says you are too advanced, get another doctor!

That is my report. I hope I have been able to help someone today.

 

Joel