Does anyone have experience of the use of botulinus toxin (in tiny doses obviously) to release otherwise rigid muscles? My wife's head is now virtually at right angles to her body with her chin pressed against her chest - although not at night when she is asleep.. Even when she is eating it is hard for her to raise her head although when something interesting or unexpected happens she does manage it. Her neurologist believes that the problem could be solved, at least to a significant degree, if the muscles at the side of her neck could be relaxed/ mildly paralysed - and he suggests a form of toxin which he says will be effective for 4 - 6 months before needing a repeat.
This Botox treatment is actually quite common in these illnesses for such situations, also with Parkinson's. Just be sure the Doctor doing it is very experienced in it.
My late husband had Botox injected just above his eyebrows for involuntary eye closure. It worked quite well and had it repeated every three months. The was done via the neurology dept. at the hospital. I noticed no side effects. Would sugest you give it a try. When PSP gets that bad anything is worth a try.
How about a really good physio who understands what PSP is. (not many about) Maybe when her muscles are relaxed in the morning they could try to manipulate the muscle to relax the tension. Good luck.
Thank you, Sprinbank..We are trying the morning massage approach. Barnacle
My husband has had 2 rounds now of Botox in his arms and hands. The Doctor is Dr. Boulias in Toronto Canada (probably google his name for futher information)--- has a clinic that treats spasticity among other things. It certainly has helped open up his fingers and helped somewhat with muscle spasms and for the first little while helped with pain but not really successful in that area. With other patients in the Nursing Home where my husband is, it has really helped with spasticity. Of course it is very expensive but covered by our medical system here in Canada and has to be redone every 3-4 months. Hope this helps.
It's the same "Botox" that all the celebs use instead of cosmetic surgery to smoothout wrinkles etc. I should think there is plenty of research around it's safety etc on the internet.
For medical use the guidelines suggest that the site of the injection should be guided by ultrasound to ensure it "hits the right spot" - but as far as I am aware they are only GUIDELINES and it's not legislation. It's ok to ask your Dr whether he has done it before and what his success rate is!
I had injections in my lower legs in October 2014 because my muscles are so ridged that my feet have turned in has helped some and will have a larger dose this January also will include my left arm and shoulder.
Good morning, Hoagy,
It constantly amazes me how differently the various symptoms of PSP can affect sufferers. Although towards the end - 30th Ocober 2014 - Roisin could only shuffle as if manacled which in a sense she was such is the cruelty of this disease, her legs never became rigid or otherwise abnormal. But her arms did and eventually she could not bend them without assistance. We were to have had another botox session in November.
According to her neurologist here in France, the only risk with botox is that it can adversely affect breathing for a time. For this reason Roisin never had multiple injections to deal with more than one "rigidity" at a time.
Good luck in January - and a happy New Year in general!
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