Botox injections for spastic muscles

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Suzannah

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Hi all,

I have recently started seeing a neuro rehab physical therapist. She has recommended that I make an appointment with one of the rehab doctors who does Botox injections for spasticity. I have an appointment coming up in the next couple of weeks.

Has anybody here ever tried Botox injections or know anything about it? Yay? Nay? I know the injections are ridiculously expensive (thousands of dollars), but I have met my equally ridiculous ($6,000!) deductible for the year, and am covered 100 percent for the last few months of the year.

I have pure UMN symptoms, so I don't have any muscle loss, just spasticity. The thought seems to be that if I can get some of the muscles in my legs to chill out for a while, I might be able to retrain some of the other muscles in my leg and foot that I'm not currently able to use. The effects of the botox will wear off eventually, but hopefully some of the gains might be kept, at least for a while.

Thoughts?
Thanks,
--Suzannah
 

Tokahfang

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Some of the oldest and slowest progressive PLSers on the PLS-Friends list have used botox injections for this. As long as you know it isn't permanent, that it will be excessive at first, wear off, and can't be done forever due to scar tissue giving off false readings - all of which you seem to know, it can be worthwhile. You just have to have your goal and its limits firmly in view.
 

Cammarak

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What is the real deal with Botox injections? My PT suggested them and it sounded like a good idea, so I asked the physicians assistant at my neuro about it. She said it wouldn't work on the muscles in my legs because they are too big, so I just abandoned the idea. Have people been doing this successfully? I can't take muscle relaxers during day bc they make me fall asleep, and I need to be awake in the classroom, and I'm not ready for the implanted pump yet. I definitely need something and I'm willing to try just about anything!
 

billbell52

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I just had it done on my legs and chest. It was my first time. I am confined to a PWC. I can't walk any more. It is expensive but between medicare and my insurance it cost less than $100. I had 12 needles of botox in my thigh muscles and calf muscles. They hook up an electrical probe to the needle to find the right spot in the muscle. My doctor took less than 15 minutes for all needles. She knew what she was doing. I reclined in my PCW and she did it there. It takes about 3 days to start feeling the effect and about 21 days for the full effect. I noticed my calf muscles loosening at 7 days and my thigh muscles at 14 days. I have almost nighttime leg cramping anymore. It is easier to do my standing exercises. The other option is the pump but I am not ready to tackle that.
 

Suzannah

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@BillBell - Thanks so much for sharing your experience. Was the procedure particularly painful or hard to deal with? How long did your doctor say that you might expect the effects to last? Are you glad you did it?

@Tokahfang - Thanks also for the info, Beky. I do know most of that, though I was wondering if you could clarify what you meant about eventual scar tissue throwing the readings off? I know it can't be used forever, but wasn't sure if that was just because it eventually stops having an effect or what. I could see that repeated injections into the same site could build scar tissue over time.

And here's a question you might also know the answer to - what's the deal with muscles in UMN disorders? I know in ALS, the muscles can't really be strengthened because of the atrophy issues. If the botox does loosen up some of the muslces that are inhibiting my ability to use my feet and ankles well, will it indeed be possible to strengthen those muscles while I have access to them? Does it work that way?

@Cammark - you should ask again! From what I've been reading, Botox is actually used fairly often for spasticity in the legs.
 

Tokahfang

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Re: Scar Tissue

When they do the botox injection, they use an electrified needle to find the spot it needs to go, it is their guide to poisoning the correct muscle. Scar tissue messes up this part of the process in some way, so they have to avoid it. The more you build up, the less clean areas they have to work with, until eventually they can't do them anymore at all. It can take quite a long time - Flora and Rita managed vocal spasticity with botox injections for a decade or so each before this became a really serious issue.

Re: Muscles in UMND

In pure UMN disease, any muscle that is getting proper spine signal, that is so far unaffected, can be strengthened. It is only when they are neurologically affected that you can't strengthen them anymore, as the lack of strength is now coming from a lack of your brain's commands, not a lack of muscle ability.

In UMN+ diseases (like HSP, for instance) there can be some complications to this. My brand of HSP gene causes muscle breakdown in the muscles of my forearms and chewing muscles, and that started many years before the neurological damage got up that high. In this case, it isn't the UMN's that are the problem, the muscles were damaged by the same thing that damaged my UMNs - bad mitochondria.
 

Clearwater AL

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Cammarak, as you wrote, ("I can't take muscle relaxers during day bc they make me fall asleep, and I need to be awake in the classroom, and I'm not ready for the implanted pump yet. I definitely need something and I'm willing to try just about anything!").

If you are not on a consistent daily regiment of Baclofen (20mgs 3X daily - 30mgs 3x daily), and or at the max dosage, you are far from considering/thinking of the pump.

Read Tokahfangs replies closely. Aside... it's important to take Baclofen as prescribed. I'd question the comment of that aide saying your muscles are too big if you want to consider Botox.
 

billbell52

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The procedure was not painful for me. It took less than 15 minutes. The needle is long but very narrow and flexible. It really worked well on my calf muscles but less so on my thigh muscles. It lasts 3 months and I am scheduled for November. I plan to do it again.
 

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So, I had my consultation appointment with the Botox doc today, and he thought that I would be a good candidate for it. He is going to do soleus/gastroc (calf muscles), quad muscles, and foot and toes. They have to get approval from my insurance, but I am tenatively scheduled for two weeks from now. I asked about the price, and they said about $1500. I've hit my giant deductible this year, but will most likely have to pay the whole cost out of pocket next year if I continue with the treatments.

And Beky and BillBell, thanks for the input.
 

TxRR

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I tried it. It worked for a little while then it quit working. I just do stretching exercises on my hamstrings now. Same results.
 

John1

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I've had botox injections in my calves 3 times now and am going back in November for a 4th session. I have been disappointed though in its effectiveness. I get some mild relief but I expected more. I will ask my neurologist for a larger dose this time. The shots are provided at no cost under our universal medical coverage in Newfoundland.
 

Suzannah

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It's Botox day today! Finally. I've been having such bad spasms in my leg that I was just about ready to tell them to just give me the needles and I'd do the injections myself. I know it takes a while for it to work, but I am desperate for some relief. Here goes!
 

MaxEidswick

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>It's Botox day today!

good luck!


>: Deep in the Heart of

texas has heart that's for sure!
 

Suzannah

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Oh, man. That was ROUGH.

It started off okay, but when the doc got to my lower leg it started spasm ing and shaking like crazy. The injections in the bottom of my foot caused outright sobbing, while I was clutching the hands of not one but two different assistants. I was shaking and crying and having spasms, and the poor doctor looked a little afraid of me. I usually have a pretty high pain tolerance, but this totally did me in. It will be pretty difficult to make the decision to go through that again, but if it works, then I probably will.

I suspect my experience wasn't the norm though, and that things were exacerbated by my other pain and tremor issues. So I don't want to scare off anybody who is thinking about it.

Now I'm the lobby waiting for the cold, rainy evening rush hour traffic to pass so I can drive to work. Feeling a little shell shocked. Glad that is over with!
 

Suzannah

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Well, 5 days out, I'm starting to see some small changes in my right leg and foot. My leg is not quite so tight, and my foot is starting to straighten out. I can now get it back flat on the floor again. It is supposed to take 1-2 weeks or so for maximum benefits, so I'm crossing my fingers that more changes are to come.

I just checked my insurance page, and it appears that the cost that was billed to the insurance was $4526, and the negotiated insurance rate is $1436. Egads. This one was covered 100% since I've met my giant deductible for the year, but I will have to pay out of pocket next time if I do it again....
 
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