Dystonia impacting my metal knee replacement. Anyone had this happen and what did you do?

[Mimi1520]

I have had dystonia in my foot for 12 years. I had a knee replacement a year and a half ago and the dystonia has pulled the tibia and femur apart so now I have to go back for a larger spacer between those two parts. Has anyone else had their dystonia destroy a knee replacement? If so how did you control your dystonia?

[lenamm]

My dystonia was wrecking havoc on my knee tendon . I have now had bilateral PTT by FUS and have zero dystonia. Not sure if it's an option but a clinic trial was just announced for the US. I had both my surgeries in Switzerland. A friend of mine who was wheelchair bound now is also dystonia free post surgery. I imagine leg dystonia would wretch havoc on a knee replacement.

[Mimi1520 in reply to lenamm]

Hi Lenamm. Forgive my ignorance, but what is bilateral PTT by FUS? I don’t know what those acronyms stand for.

[lenamm in reply to Mimi1520]

sonimodul.ch/parkinson/ . Search here PTT or FUS and you will find lots of thread. Short answer - it is a brain surgery done by focused ultrasound

[Mimi1520 in reply to lenamm]

Thank you! I am going to see a specialist in Denver on the 11th. This would definitely be worth mentioning. I’m so happy for you being dystonia free!!!

[lenamm in reply to Mimi1520]

It is so nice to be able to take long walks again. Overall 90% of my symptoms are gone after the second surgery - it is real! Many US MDSs don't know about it - mine didn't. It was just released two days ago that a US clinical trial is starting so hopefully that will bring more awareness.

[parkie13]

Spraying the area with magnesium oil? It really helps my toes.