Botox injections for spasticity

[pprovost]

I asked my doctor about Botox injections being an option instead of Baclofen tablets which have caused me to feel very tired and lethargic. She did not seem enthiusiastic informing me that i would have get repetitive treatments every so often. she also told me that I would need to have it done in the Neurology Dept of a hospital to ensure that it was administered by a trained person in that field. So now I am thinking of abandonning this idea unless I am convinced that it really is that beneficial.

It is not convenient for me to travel 20 minutes to the hospital so this is an issue I need to adress if I want this treatment.

Would like to hear your experiences and if it is worh the extra trouble to overcome the side effects of baclofen meds taken orally.

 

 

 

thanks in advance, I need advice

 

Pat

 

[garydotgray]

Hi Pat

 

Just read your post and I have no idea about Baclofen tablets nor have I ever taken them.

 

My Doctor did give me a Botox treatment in July to reduce the spacicity in my left arm and hand. (six injections)

 

This was a one shot deal and it had quite a dramatic effect.

 

It relaxed the arm to the point that I could put my hand in my pants pocket. (first time post stroke)

 

By relaxing the arm it actually changed my center of balance. (Back to more pre stroke stance)

 

It relaxed my wrist so that I could rotate it and flex it. (using my right hand)

 

These rotate and flex exercises were to teach the brain how to rotate and flex the wrist and it has worked (a bit slow in the rotation department but not bad in the flex department)

 

I had a follow up apt. a week last Tuesday and the Doctor was very pleased with the results. (increased range in all areas tested including a much improved relaxed arm position, stance and ability to rotate and flex the left wrist)

 

The side effects were weakness in the arm and hand that should subside in another month or so.

 

According to the doctor he expects the increased range, the reduced spacicity, more natural stance and the brain training to be long term.

 

So this was a one shot deal and I guess the bottom line is that I would do it again if I were faced with the chance/choice.

 

I live about 30 minutes from the hospital and do not have my own car so that was an issue as well.

 

However, I will rent, borrow or steal wheels if I have to to get to an appointment.

 

I hope this helps you in your search for information.

 

If you need more information/details PM me anytime.

 

 

ps

 

Here is a link to my blog where there are a few more comments and also links to videos on Botox treatments

 

click here to go to my blog

 

You may also find this video to be of interest to you.

 

"State-of-the-Art Treatments for Post-Stroke Spasticity"

 

Click here for the video

[ruthie65]

I have had Botox for tone, not spasticity. I also take Baclofen for spasticity with the same side effect. As far as the Botox for tone I have had terrific results and you only need to repeat it in approx. 3-6 months I was still in the hospital when I had mine. In the next week or so I will be receiving my first outpatient treatment.

[Marnie]

I am currently receiving botox injections every 15 weeks (roughly), they have reduced my very painful hand spasms and my fingers are more relaxed. I have been lucky with the treatment as I know it does not work for everyone. I to was on baclofen and was having to many side effects with it. My spasms are a form of dystonia and was introduced to botox at a hospital over 60 miles away from where I live. I dont drive and have to get my mum to take a day of work like myself to drive me to the nuero department at the hospital.

 

 

This is a long journey but I have to say that Its work putting up with every 3-4 months just so as to receive these injections. They have enhanced my life I am able to do so much more now, that my fingers are not constantly curled under and my fist is not clenched tight. My arm would rise up to my shoulder as well, but not any more it is relaxed and I can hold a piece of paper flat with my fingers flat and open so as to sign my signature.

 

If you want to ask me any more about my experience with botox I would be more than happy to just PM me anytime

[fking]

General question!!!! What is the cost range of these Botox treatments and will most/some insurances pay???? How many treatment are normally given/needed to complete a series??

[garydotgray]

Hi Fred

 

In my case the treatment was not normally covered. However my doctor made a request to the province and received approval that they would cover the cost.

 

Again in my case it was only to be done once with the idea that if while the linb is relaxed you can train the brain then the training will stay long term.

 

To that end the treatment appears to have been successful and has made both my doctor and me happy. (a couple of more months to know for sure)

 

I was never told the cost of the treatment.

 

My body is still changing even after three years. Right now my BP has dropped and I am monitoring it quite closely.(I don't want it to drop too much)

 

I may have to have the doctor check it out if this trend continues. (I may require a change in my meds)

 

I am in the process of making some adjustments in my diet (doctor recomended) and that may be why my BP is lower.

 

smiles

 

Gary

[Marnie]

The health service is different here in the UK, I can receive them for as long as I need and want them as they are working to reduce my dystonia muscle spasm. Every so often I participate in a research study to prove what they have done for me and the difference in my every day life.

 

 

It also is free health service here in uk which is a plus for us, but a nail in the purse for my European friends.

 

 

[tom71]

Pat,

I first started botox injections at Indiana University Hospital as a part of a research study, they halped loosen up my left arm/hand, so I continued them as an outpatient they are really helping my arm/hand, but you will need to repeat them every 3-4 months or so, my insurance does pay for them , Thank God, the ammount billed to my insurance company was $6,500, I received my 6th round of injections yesterday, and it takes about a week for them to loosen up the muscles. Good Luck! any other questions you may have send me a message!

God Bless,

Tom

[fking]

PAT,

 

Thanks for a great thread, looks like advise has been given except for the side effect difference between the two treatments. I'm interested due to having limited movement and much pain leg and arm.

 

I'm understanding it could be the way to go, but like everything else, will it work for you or me. It's working for others with the same problems, so who knows.

 

I could do the travel to hospital, the price and wether or not my insurance will pay is my concern.

 

Thanks Gary, Marnie, Ruth, and Tom for your information, it has been helpful in my case. Marnie, I wish I could come to UK, but I'd even have trouble getting there, much less being seen for free as a US citizen.

 

I just don't understand why ALL needed treatments above medicine is so expensive for survivors who in most cases have lost jobs and income and have big hospital bill from having a stroke.

 

Decision time for me, thanks everybody! I probably won't need to PM you, your info was what I needed.

 

Ruth, let us know after you receive your first outpatient treatment later.

[garydotgray]

 

Hi Fred

 

I wish you the very best with your decision. Hope that your insurance does include Botox treatments in your coverage.

Do you think the pain is being caused by the spacicity? I had soreness in my shoulder after the stroke. Kept exercising it and stretching it. That helped but I also found that you don't just let the arm hang limp as the entire weight of the arm (at first) was being supported by the shoulder and agravating the condition.

 

Last week at the doctors office I was able to extend the arm fully above my head and almost straight out extended as well with no pain nor soreness. (a very good feeling) LOL

 

I guess it is a matter of never giving up but keep working on these things.

 

I'll have to keep practicing the walking without bouncing off the walls eh LOL

 

Smiles

 

Gary

[fking]

Gary, I don't really know about the pain, but the arm and hand is getting less useable, seems to be tightening up. I used to be able to touch my thumb to each finger, no more now and I can't feel when my foot is touching the floor.

[rosejill]

Pat, just wanted to touch base w/you about the botox treatments and my experience w/them so far-which some, I think have been benefical, I say "I think" because there just hasn't been no big "results", or at least not what I was hoping for. (i think in my case i had set my hopes up so high that they would help keep my fingers open and help my hand from staying so tightly closed and that just hasn't happen) but I feel sure there has to had been some kind of good though small but my tone is really, really bad. I get my shots from my neuroligst in his office.- which I think would have to cost less than having them done in a hospital- where they charge just to say "what do you want"but they do have to be done by someone like a neuroligst. I've been getting them for about a year and half, a set of around 6-7 shots in arm and 4-5 in lower part of my leg. Some visits I've gotten more shots and sometimes I've got less. and I get them every 90 days. The costs of them just varies on how much botox he uses. Usually, according to the "EOB's I use to get the cost has been around $2,235.00. Isn't that terrible ! but that was w/my husband's good insurance, but he doesn't have that now but Medicare has paid for mine several times. So I guess one wonders why I'm still getting them since I haven't seen no big results? There's always HOPE! and as we all know here and by reading some of the other posts, there are some good results that people have had so please don't be discouraged by me saying my results not being the greatest in the world, because as we all know here each person is different. Hope this has been a little helpful and good luck which ever way you decide....

 

 

Scooterman: When O When is the high cost of medical treatment and medicines going to stop? Not in our life time I'm sure! rose

[TOM HOLUB]

I took botox injections every three months for a two year period They were covered by my insurance, althgough it took some time to find the right procedure code to the insurance company. Guess they don't want me fixzing my crows feet around my eyes,

 

Tghe cosat was in the thousands of dollars, but was mostly paid by insurance. I did have a couple of $800 balances thast I had to pay ourt of pocket during the course of the treatment.

 

Freankly, i was disappointed in the results. My hand was definitely a bit looser, but I got no functionality back. it did make it easier to place the hand in a splint i wear in bed at night.

 

I found accupuncture actually lessened the spasticity more than the botox,

 

Tom Holub

[fking]

Thanks Rose and Tom, guess I'll have to get with my neurologist, see what he thinks, then my insurance co. At this day and time I can't "pay attention" or the co-pay. He turned me down on the biomove machine, saying it would not benefit me in my condition. He'll probably ditto the botox treatments as well and him giving them in his office.

 

Now that I recall, he wasn't keen on the oxygen treatment either, saying it wasn't that great and it would not help me. Maybe I'm a lost case except for medicines I swallow.

 

[mljmsw]

Hi Pat.

 

Lt me preface by saying don't stop taking anything without checking with getting directions from your physician, specifically baclofen.

 

I have had Botox for the last year plus continued the baclofen. The Botox helped a lot but wore off quickly. It's expensive and is a short-term solution. Ask your physician about other alternatives.

 

mljmsw

[mljmsw]

Hi Pat,

 

Wanted to add to my previous reply.

 

Keep asking questions and pursuing all options.

 

mljmsw

[Guest Debbie47]

My Mom suffered a severe stroke which caused one of her legs to be spastic, complicating daily hygiene and dressing.

 

She's been getting botox injections for a year, and they work wonders. She has no motor skills or mobility, or communication - wiped out basically - but the injections made it much easier to care for her, and eliminated alot of pain.

 

Debbie47

[door60]

I know that Medicare pays for the Botox injections for stroke patients.

My mother is using the Saebo, and she has gotten some function out of her affected hand. However, when she walks, her hand curls to the elbow. I would love her to try the Botox, but I am afraid it might take away some of the function she gained with the Saebo. Anybody using both ???

Dorrie

[merichsen]

HI PAT I HAVE NO EXPERIENCE WITH BOTOX...SO WHY ARE YOU RESPONDING???? ~YOU ARE SAYING. I HAVE A FRIEND AT THERAPY WHO HAD BOTOX INJECTIONS SHE WAS UNIMPRESSED WITH THE RESULTS. SHE HAS ABOUT ZERO TONE THOUGH, SO I DON'T KNOW WHAT WAS GOING TO BE RELAXED. IT'S WORTH A SHOT NO PUN INTENDED YOU HAVE NOTHING TO LOSE. I HAVE HEARD GREAT THINGS TOO

BEST TO YOU WHATEVER YOU DECIDE. HOPEFULLY IT WILL BENEFIT YOUAND YOU CAN GIVE US ALL A BIG HIGH FIVE

[door60]

Just to remind everyone out there, at Brooklyn's Lutheran Hospital, they are doing a clinical trial with Botox injections, so if your insurance doesn't pay for it and you qualify.... Also they will reimburse travel expenses up to $50

Dorrie