Anyone with Botox in Legs?

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Re: Anyone with Botox in Legs?

Postby karenb » Mon Aug 08, 2011 10:43 pm

Hi all,

It's been 7 days post-injection (actually, 6-1/2, but who's counting...).

Right now, I feel very discouraged. In the pool this morning, I noticed that both of my peroneal muscles (right and left) were actually more sensitive in the region near the head.

I don't have any sensation in the hamstring (maybe a good thing????), but my hip hurts like the dickens.

I know I still need to wait 1-4 days before knowing the ultimate result, but I'm starting to fear that my treatment did nothing for either peroneal muscle, and just aggravated my hip... I'm still hoping for a break-throught or hope of a successful pain remedy, but i fear the instructions from my spinal cord (be it however damaged) are over-riding the instructions from my leg, including the Botox that was injected.

Encouraging thoughts appreciated...

Karen
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Re: Anyone with Botox in Legs?

Postby hegnauea » Thu Aug 11, 2011 11:51 am

Karen,

I hope the past few days since you posted this have allowed you to see some sort of improvement. I wonder about your theory as well. Sending good vibes your way..

Hugs,
Ab
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Re: Anyone with Botox in Legs?

Postby Beverley » Thu Aug 11, 2011 12:31 pm

Hi Karen,

I have dystonia in my legs and feet, my left side is worst than my right and I have had botox in my calf and foot on my left leg. I don't really have spasams exactly for me my calf is in a constant tense or tight position. Basically it is like you tighten up your muscles and it just stays that way with minimal release. I guess I am luckly that it does not spasam in some ways maybe that is more painfull.

Your Doctor should be using an EMG machine to determine where is the best place to administer the botox. The EMG will go crazy and make lots of noise when a muscle it tense or spasaming. This way they are getting the botox right where it needs to be to get the best result.

The one thing that they may not have told you is that they start off using a very minimal amout of botox it can take several treatments of botox to build up to the amout that is needed in the area that is needed for you to get good relief. Most often botox is only given every three month so it could take a year before you actually get the best benefit.

Basically, when you go back they should be asking you how it went and what you felt worked and didn't work. My NL keeps a diagram of where they gave the shots and how much they gave so they can determine next time if they need more or less or need to add other areas or not give it the areas they did last time. If you Doctor is not well versed in using Botox this could take some trial and error.

I hope it is going well. Also, because the first few shots are very low doseages it could wear off faster than the three months.

Beverley









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Re: Anyone with Botox in Legs?

Postby karenb » Fri Aug 12, 2011 12:19 am

Ab and Beverly,

Thank you so much for the input!

I'm now at injection + 10 days, which is the normal critical point. Based on others with SM experience, I know I should be targeting 2 weeks. My pain management doctor was consistent with what you're saying, in that the injection should last about 3 months - she used manual palpitation to determine the area of greatest spasticity, and targeted that area with the injections (rather than using an EMG).

I'm not really sure what's going on with the hamstring, since that's such a big area (ba-dump-bump). My peroneal muscles, however, are more isolated - both have been "locked" in what feels (to the hand) like a cord running from just below the outside of my knee all the way to the foot. I can definitely tell a difference... the botox in the left leg (which has been in trouble for almost 14 years now and is much weaker) seems to have backfired - I now have pain in the sole of my foot again, and the main area of pain is now in the "belly" of the muscle (it had been more in the "head" before") and under my foot. FYI, the muscle spasm or contraction in the left leg has been strong enough to dislocate bones in my foot for almost 14 years, but I've never before felt the actual muscle spasm there before - it was always pain/numbness from the dislocation and associated stress fractures and soft-tissue injuries.

Right now, I'm using lidoderm patches (12 hours on / 12 hours off) and heat to deal with the discomfort. I'm definitely going to be speaking with my physician about this. The discomfort in my rear/hip seems to be subsiding, except when I sit in hard chairs, when my "butt atrophy" poses problems :lol: .

I'll keep y'all posted...

Karen
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Re: Anyone with Botox in Legs?

Postby karenb » Mon Dec 19, 2011 11:29 pm

Hi All,

I guess it's time for an update...

I asked several of my doctors (Rheumatologist, Neurologist, both Pain Mgmt docs) about EDS, and they don't think I have it.

As for Botox, they think the combo of Botox (along with the muscle relaxant Baclofen) has virtually eliminated the muscle spasticity in my legs. But... (and a big but at that) the Botox didn't help the pain - in fact, it may have worsened it.

So... I've been in Spinal Cord Injury (SCI) rehab now for about 5 weeks. My next session is tomorrow (I took 2 weeks off for a severe bout of bronchitis, strep, & a sinus infection). So far, it's too early to know much - the spinal rehab doctor wants to get me using the manual wheelchair again (in other words, he wants me to gain endurance and strength, and also gain technique, which I was never taught in the first place). My only restrictions are "no straining" (I know... somebody please tell my colon & digestive system).

P.S. I'm even being recruited for the wheelchair basketball team! (Clearly, this particular PT has never seen any demonstrations of my excellent aim, balance, or coordination - I'm really looking forward to being chosen last when we pick sides!)
karenb
 
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Re: Anyone with Botox in Legs?

Postby wendi » Tue Dec 20, 2011 9:13 am

Please post photos of you playing BBall in those fab red high heels, lol.

Merry Christmas!

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 » Tue Dec 27, 2011 10:27 pm

Wendi,

Dang! You have a wicked sense of humor. For full clarification, my stilettoes are black, and my fancy dress is red! Of course, given the overall intent, it's easy to get the two mixed up... Heaven only knows I do!

Should I have the opportunity to play B-Ball (and I hope I do), it will be all I can do to hit the basket! My hope is that I can use the opportunity to gain more agility in my wheelchair, and maybe redeem all those years in gym class.

On the serious note, I'm now able to use the manual wheelchair and the walker for several hundred yards each. My physical therapist is pleased, but he's not sure how realistic my goal of dancing the Salsa is at this time. Personally, I'm still hoping for a bit more instruction (like how to do wheelies, etc), but everything has to meet insurance guidelines... and so on...

Karen
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Re: Anyone with Botox in Legs?

Postby wendi » Wed Dec 28, 2011 11:06 am

Oops, since I have brain damage, I did mix up the colors and since I have red ones, must have assumed you did too.

I hope you had a wonderful Christmas, if that is your holiday and your new year is prosperous and learn to play Basket Ball and just kill the competition.

Take care!

Wendi
ACM 7.5mm B4 TCS 2.4mm post op
TC ,TCS @ TCI on 1/3/08,
chronic sacrolitis
wendi
 
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