Jump to content
helplinedonate
  • Announcements

    • ForumAdmin

      Frequently Asked Questions - Step by step guides

      Do you need assistance registering, logging in, posting, etc? Please visit the all new Frequently Asked Question Forum for step-by-step guides. Click the link below to access these helpful guides. Frequently Asked Questions
    • ForumAdmin

      Recursos Nuevos en Español

      http://www.parkinson.org/ayuda   http://www.parkinson.org/espanol    
    • ForumAdmin

      Línea de Ayuda 1-800-473-4636

      Línea de Ayuda 1-800-473-4636   ¿Qué es la línea de ayuda 1-800-4PD-INFO (473-4636) de la Fundación Nacional de Parkinson? Es un número de teléfono gratuito que ayuda a las personas con la enfermedad de Parkinson, sus familiares, amigos y profesionales de salud, a solucionar diferentes inquietudes.   La línea de ayuda ofrece: Información actualizada Apoyo emocional Referidos a profesionales de salud Recursos comunitarios Amplia variedad de publicaciones gratis    
Sign in to follow this  
Pureannc

Botox for dystonia ?....?

Recommended Posts

My Neurologist is recommending Botox shots in the bottom of both feet for toes curling down.

This dystonian condition does not happen all of the time, but is intermittent, and more often on one foot. Can anyone share their experience with this? Do they help? For what length of time? Will this be an ongoing treatment etc......

Thanking you in advance for your input.

Share this post


Link to post
Share on other sites

Hi Ann;

 While I haven't had any Botox in my feet due to Dystonia, I have had several stitches.... and talk about serious pain......  Based on that? I'll keep the Dystonia in my feet thankyouverymuch.

 

Seriously though, I used to get bad Dystonia in both feet, and prior to my surgery, my MDS suggested that I start taking Magnesium (Chelated) at 200mgs, and I found that it worked ok, until I had my surgery. After I had my DBS surgery, and we got my L&R Voltages adjusted up, I found that after a certain level, the Dystonia went away. So now, unless I'm having a bad PD day, or missed a pill, or need an adjustment, my Dystonia is a thing of the past...................................   

  • Like 1

Share this post


Link to post
Share on other sites

Anne,

My wife had the injections around every three months before her surgery. Her feet would curl up into a C. Very painful and it would last from 20-60 minutes. After the injections it would still happen some, but the pain would be considerably less. Hope that helps.

Share this post


Link to post
Share on other sites

Dystonia in my right foot (big toe twists up, all the rest claw down!) is the first sign, for me, that something is out of balance.  I either need a tweak of my DBS, a tweak of my meds, or else occasionally, I need to slow my butt down for an hour or two!

 

A few years ago, a doctor recommended Botox shots in my right foot.  But, after looking into it, I decided that for me, it wasn't yet an option.  The first factor was the pain of the shots!  I have super, super sensitive feet these days and the very idea of someone as much as touching them sends me through the ceiling, I can not imagine needles... UGH!!  'Nuff said!!

 

The second factor was the duration--the doctor said I'd probably have to have it done every three months or so.  Oooh... Well, if it really helped, maybe?

 

But, the third factor, that the Botox would, essentially, "paralyze" the muscles in the foot--just, put me off entirely--after all, I didn't know how that would feel, or how it would impact my ability to wear flip flops!!  However, I have a friend who has Botox frequently for a medical condition and it has improved the quality of her life ten-fold.  So, I don't say it's a bad idea for anyone else.  And, had I not had DBS and a new neurologist who is very good at working with me to fine tune my settings into the "sweet spot," I just might have sucked up the painful notion of Botox shots anyway.  After all, we must all do what is best for us--always--on a case-by-case basis.

 

Hope that helps,

Kim

  • Like 1

Share this post


Link to post
Share on other sites

Dystonia in my foot was my presenting symptom.  I was not ready to start taking c/l when I was first diagnosed because my other symptoms were so mild but I did want relief from the toe curling because it was hindering my ability to walk and exercise.  I asked my MDS about botox as an option and he was not for it.  I remained unmedicated for about 6 months until the toe curling became so bad that I had to do something so I started on c/l.  My mild symptoms were immediately improved but the toe curling was not completely controlled.  I began to think that it was not going to be c/l responsive.  I am glad to say I was wrong.  It took longer to for the medication to control the dystonia but I do have relief now.  Are you on L-dopa?

  • Like 1

Share this post


Link to post
Share on other sites

Thank you for responding to my request. I will try the magnesium, as this was also recommended by my acupuncturist.

Kim, I also have very sensitive feet and the thought creeps me out. I want to try other options before moving forward with the shots. I feel as though I am not at an optimal setting and more fine tuning is needed. The toes curling under on the left foot can also have a slight tremor in the same leg and foot. This was not happening 2 stimulation settings ago. New neurologist, new setting = some improvement, but more dystonian movements.

Peace, I am taking Carbidopa/Levodopa 25-100mg 1 tablet @ 2.5 hours (5daily). Also taking Extended- release 25-100 2 @ bedtime, 1 upon waking. This is same medication as before DBS. I stopped taking Requip, before my surgery. I had bad side effects from that RX.

Share this post


Link to post
Share on other sites

Thank you for responding to my request. I will try the magnesium, as this was also recommended by my acupuncturist.

Kim, I also have very sensitive feet and the thought creeps me out. I want to try other options before moving forward with the shots. I feel as though I am not at an optimal setting and more fine tuning is needed. The toes curling under on the left foot can also have a slight tremor in the same leg and foot. This was not happening 2 stimulation settings ago. New neurologist, new setting = some improvement, but more dystonian movements.

Peace, I am taking Carbidopa/Levodopa 25-100mg 1 tablet @ 2.5 hours (5daily). Also taking Extended- release 25-100 2 @ bedtime, 1 upon waking. This is same medication as before DBS. I stopped taking Requip, before my surgery. I had bad side effects from that RX.

My botox experience :  I’ve had botox shots for my big toe on my right foot “rising up to the moon” but the shots were not in the toe itself but in the muscle that straightens the big toe; the doctor would catch it on the lower part of my leg, around my ankle. The shot was not very painful, by far less painful than the ones I had on my skull for DBS. I had them every 4 months for about 3 years. The problem was gradually solved.

I was about to have Botox shots for my toes on my left foot which were almost permanently clamped. The shot was meant to be performed under the foot and my doctor prescribed an anesthesic cream to apply 2 hours before the appointment. That would make the injection far less painful.   Well, for some strange reason, about two weeks before I was due to have the Botox shot, my feet mysteriously relaxed ( after several months of painful curling position) and there was no more need for that injection, so I won’t be able to report on the efficiency of that anesthesic cream. (It comes also as a patch.)   I was supposed to wrap my foot in a stretch film (like the one we used to protect food) so the active ingredients remain on the foot.

This is yet another example of these painful episodes that mysteriously come and go.  I’ve had a bad pain in my neck that suddenly appeared for no obvious reason and disappeared the same way after a year.  That is possibly not necessarily due to Parkinson’s (we sometimes put the blame too quickly on PD).

Hope that helps !

Mireille

Share this post


Link to post
Share on other sites

My botox experience :  I’ve had botox shots for my big toe on my right foot “rising up to the moon” but the shots were not in the toe itself but in the muscle that straightens the big toe; the doctor would catch it on the lower part of my leg, around my ankle. The shot was not very painful, by far less painful than the ones I had on my skull for DBS. I had them every 4 months for about 3 years. The problem was gradually solved.

I was about to have Botox shots for my toes on my left foot which were almost permanently clamped. The shot was meant to be performed under the foot and my doctor prescribed an anesthesic cream to apply 2 hours before the appointment. That would make the injection far less painful.   Well, for some strange reason, about two weeks before I was due to have the Botox shot, my feet mysteriously relaxed ( after several months of painful curling position) and there was no more need for that injection, so I won’t be able to report on the efficiency of that anesthesic cream. (It comes also as a patch.)   I was supposed to wrap my foot in a stretch film (like the one we used to protect food) so the active ingredients remain on the foot.

This is yet another example of these painful episodes that mysteriously come and go.  I’ve had a bad pain in my neck that suddenly appeared for no obvious reason and disappeared the same way after a year.  That is possibly not necessarily due to Parkinson’s (we sometimes put the blame too quickly on PD).

Hope that helps !

Mireille

 

Thank you for your comments. I pray my toes will uncurl on the left foot And there will be no need for the shots.

  • Like 1

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

Sign in to follow this  

×