Anyone with Botox in Legs?

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Anyone with Botox in Legs?

Postby karenb » Tue Jul 05, 2011 10:26 pm

Hi All,

I have SM only, from T6-T9, about 3 mm or so in width.

I have persistant (read that constant/never-ending) muslce spasms in my legs - peroneal muscles of both legs (for 13 years and going) and hamstrings (entire back of thighs - starting to move into buttocks and down into calves of both legs) for 5 or 6 years.

I already take Neurontin (1500 mg per day), Vicoprofin (7.5/200 two to four times per day), & Klonopin (2 mg at bedtime). Recently, my neurologist & pain mgmt docs added Baclofen (10 mg three times a day), and are thinking about going the route of a Baclofen pump. Has anyone dealt with a Baclofen pump before?

My pain mgmt doc (the good one - not the quack) is considering Botox injections to try to calm the muscle spasms in my peroneal muscles. Has anyone had these? What was your experience? (FYI, She's considering it for the muscle spasms in my legs - nothing to do with my back, neck, or head.)

Thanks!

Karen

P.S. I tried searching, but ended up swamped with info related to the upper body... sorry to trouble y'all what may seem silly questions...
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Re: Anyone with Botox in Legs?

Postby gunflint » Wed Jul 06, 2011 6:28 am

karenb

I have been reading a lot about pain meds over the last few months (who hasn't) and I have seen that botox has been used successfully for the type of pain that a lot of us endure. I'll be interested to hear how it works for you. I don't know how you can get by on 15 to 30 mg's of hydrocodone a day. I'm at 45 and have an appointment in a couple of weeks to see if I can't get it upped to 60. I would like to get the hydrocodone/ibuprofen combo also. I get the 7.5 500 lortabs. The 500 obviously being acetaminophen. I have to take 9 to 12 motrins a day just for the headaches I get from all the tylenol. Plus I hate the ringing in the ears.

I looked up klonopin, that's some pretty heavy duty stuff. I hope that it's working for you. I am also on Gabapentin. I was going to ask for Lyrica but I would have to sell my truck for a months supply. I haven't been impressed with it so far but I just got up to a full dose (1800mg) a few days ago. Good luck and lets us know how it works for you.
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Re: Anyone with Botox in Legs?

Postby karenb » Wed Jul 06, 2011 1:18 pm

Hi Gunflint,

The Klonopin has actually worked really well for the Myoclonus (looks like a lower-body seizure, but isn't) and my tendency to collapse (probably due to myoclonic activity when I'm standing). It's better now that I take it at bed-time.

FYI, I really think the Vicoprofen works better than Vicodin - I was taking Vicodin until the acetaminophen started causing problems for my liver.

I'll definitely post back here (if the treatment is approved). Right now, I'm trying to find out if anyone here has experience with it with their legs (like does it work?). I read posts until I couldn't see anymore, but they seemed to all be dealing with upper body problems rather than legs.

Take care, and keep hanging in there!

Karen
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Re: Anyone with Botox in Legs?

Postby Janice » Wed Jul 06, 2011 5:10 pm

I was prescribed Baclofen for the persistent muscle spasms in my legs & spine. It seemed to work quite well for me. These spasms felt like a never-ending charlie horse and I was extremely miserable from this excruciating pain. It is currently prescribed PRN.

During this time, my physiatrist prescribed a baclofen pump that would include Dilaudid as a pain med. I thought I was finally going to experience some serious relief. When the request went to my NS, he shot it down listing multiple reasons why he wouldn't do it. We tried going through my OS, but he rejected it also for some of the same reasons as my NS, and a few others. My OS is the main doc on my team as he was the one who found the syrinx & originally treated me through my hospital & rehab stay.

As for syringes in the thoracic region, the only thing I've heard is that the surgery would be more involved, with greater risks, than syringes found in the cervical or lumbar region.

Karen, let me know if you have any questions about those wretched spasms.

Take care,
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
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Re: Anyone with Botox in Legs?

Postby syrinx48 » Thu Jul 07, 2011 8:08 am

Hi Karen,

I have heard good things about Botox with spasms in the legs, only not in combination with SM. More in combination with Spina Bifida. I had Botox in my bladder, that was à disaster. Have had à cathether à demeure for quite some time after that, and multiple bladder infections. But luckely it is quite some time ago. Now my Urologist wants to give me a bladder modulation, but not without the consent of a neurosurgeon. They don't want to give that, it's the responsibility of the Urologist they say.(won't burn their fingers!)

Annemarie

PS. If you know more about the spasms, please let me know. I have them too, and take à lot of medication for it like: Clonazepam, Natriumvalproaat chrono. Don't know if these medication is available in THE States.
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Re: Anyone with Botox in Legs?

Postby wendi » Thu Jul 07, 2011 1:44 pm

I think Karen (Hikealaska) has tried some Botox, not sure where she had it tho. I just heard this morning that they are giving it to asthma pts in their lungs for attacks. It seems botox is being used for all sorts of things. They put it in my surgical site after my TCS to help with muscle spasm, I had to sign an extra consent form. It was experimental at the time. I signed as I was all for something to help with pain. I dont' know if it was more helpful as it was the only time I had the surgery, but it makes sense as it paralizis the area injected.

Wendi
ACM 7.5mm B4 TCS 2.4mm post op
TC ,TCS @ TCI on 1/3/08,
chronic sacrolitis
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Re: Anyone with Botox in Legs?

Postby karenb » Thu Jul 07, 2011 10:01 pm

Wendi & Annemarie,

Thanks for the info. Do you happen to know if the other Karen (one among many) had Botox in her legs or upper body?

Right now, we're only talking about Botox in the lower legs. The pain management doctor is thinking about a baclofen pump for the spasticity that's spreading up and down my hamstrings. What I really hate is the constant pain in my "butt-bones" - right where the hamstring connects to the bone.

I am taking Clonazepam, but haven't heard about Natriumvalproaat chrono (if I even spelt it right :lol: ). The clonazepam seems to work pretty well, particularly if I take it at night (I still have some myoclonus occasionally during the day, but usually only a couple of episodes a month now).

Right now, I'm pretty tired of feeling tired all the time - the baclofen/clonazepam combo just makes it worse... sigh... some days I don't know how I feel just because I feel so drowsy...

One bit of positive news - a couple of weeks ago, I started back with organ studies. I'm having to learn some new pedal techniques, but am thoroughly enjoying the intellectual exercise, as well as the physical challenges. I just played my first church service in about 5 years on June 26 - it went pretty well, except for fatigue sitting on the bench so long.

Karen

P.S. The combination of Uroquid and self-cathing for my bladder seems to be working. That being the case, ain't nobody touching my water-works!! No way!!!
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Re: Anyone with Botox in Legs?

Postby africk22 » Fri Jul 08, 2011 2:25 am

Ive done alot of research on muscle spasms and heard alot from docs as well and my doc n louisville is wanting to use botox in my head and neck to start to try for help with the migraines and severe spasms in the neck that jolts down the spine an shoulders and then if it is success then pain management at home will proceed treatment downward. But were first trying the long line of drugs first I think we have to do that for insurance purposes but I think you would have great results its just a temp fix but its better than swallowin pills! an all those side effects! In my oppinion. But thats just what I think. Let me kno what you decide I hate spasms jerks whatever they tell me they r a diff day i go. goodluck to ya! :D
Rearended n Car wreck 08 back n neck w/Bulging/Herniated discs, Spinal Stenosis&Spondylosis, CM1 6-7mm, Adv.DDD,Demineralizin Vertebraes, Arthritis, Bursitis, Fibromyalgia, Insomnia, Chronic Migraines, n much more!
MUCH LUV N PRAYERS 2 ALL!
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Re: Anyone with Botox in Legs?

Postby karenb » Sun Jul 10, 2011 1:11 pm

Hi All,

Well, I've been approved for the Botox injections, and they're scheduled for August 2. We couldn't do it sooner because I have too many MD appointments already scheduled this week, and my pain management doctor is going to be on vacation for the next two weeks. (What? A vacation? What a novel concept!)

I'm a little scared of the whole idea - Can anyone advise me what the shots actually feel like, and what they do? The only other time I've had an injection in the peroneal muscles was when they tried a dose of anesthesia to see if they could break the spasm. The muscle relaxed for about 18 hours... just until the anesthetic wore off... :-(

Thanks for your help and support!

Karen
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Re: Anyone with Botox in Legs?

Postby Janice » Mon Jul 11, 2011 12:59 pm

Hi Karen,

That's terrific news! I hope it works out for you.

I've often wondered, based on a few of your posts, if you have a form of EDS. Have you ever been tested for this?

Take care,
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
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Re: Anyone with Botox in Legs?

Postby karenb » Tue Jul 12, 2011 3:04 am

Hi Janice,

To my knowledge, I haven't been tested for EDS. What does the test involve?

Karen
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Re: Anyone with Botox in Legs?

Postby Janice » Tue Jul 12, 2011 9:04 am

Hi Karen,

I don't have EDS so I've never been tested. I believe the test uses the flexibility of your limbs and other pertinent body parts to determine if you have EDS & what type you might have. There was once quite a few people on board with EDS who could give you accurate input. I'm not sure how many people are still around who could help out.

I do know, that like myself, many read but have great difficulty responding. Creating a separate post, requesting info on EDS might help. Searching older posts could be helpful also.

I would do an online search for you & add a link here, but my cell doesn't allow me to. I do think if you research the topic, you might question if you could have this. Not that you don't have enough going on, but I might find a solution for your joints dislocating. Most of all, I hope I haven't confused you with someone else, and caused you to wonder or worry unnecessarily.

Take care,
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
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Re: Anyone with Botox in Legs?

Postby karenb » Wed Jul 13, 2011 11:58 pm

Hi Janice,

Interesting thoughts... I'm still processing them a little, and will probably call Richardson to see if they have any EDS info in advance of the national conference.

The only bones that dislocate are the intrinsic bones of my feet (cuboid bone, metatarsal heads, etc.). Nothing else has ever really dislocated. This initially led the neurologists down the path of Charcot Marie Tooth muscular dystrophy, but they were never able to make a diagnosis (and I think heading so far down the wrong path caused them to miss the syrinx in the meantime...).

I'll try to do a little research tomorrow. I'm kind of pooped tonight.

Karen
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Re: Anyone with Botox in Legs?

Postby karenb » Wed Aug 03, 2011 9:58 pm

Hi All,

I had three Botox injections yesterday afternoon. Two were in the heads of my peroneal muscles (below the right and left knee), and the other was near the head (rear-end-attachment) of my left hamstring.

I've had a constant muscle spasm in the left peroneal muscle for at least 13 years, and have had trouble in my left hip (and buttock) for 5-6 years. The doctor told me it might take 7-10 days for the botox to start helping. Right now, my left leg hurts really bad (maybe because it's been numb for so long???).

Any guidance/advice/prior experiences would be greatly appreciated. In lieu of any real-life experience, an "attagirl" would be greatly appreciated. (There are times I forget how bad pain can be, since i experience numbness so much of the time...)

Karen
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Re: Anyone with Botox in Legs?

Postby hegnauea » Fri Aug 05, 2011 1:49 pm

Hey Karen,
I can't speak from any sort of experience, just wanted to say I am thinking of you and hoping that this helps you out. I have had a constant spasm in my glut for over 10 years, although sometimes it can be quite mild and not bother me. But there is always a rock in there - I slide down the stairs with my daughter since I can't carry her (and because its fun ;)), and there is a clunk with every stair. Weird!!! Anyway I worry about the long term affects of this so am interested in how your treatments will work out.

Ab
SM C5-C6, borderline chiari, blah blah blah
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