Physical Rehabilitation for FND Patients at the Mayo Clinic

[kotovasv]

I would like to mention the program developed at the Mayo Clinic in Rochester, MN for motor and speech reprogramming in FND patients. I was offered this program while at the Mayo Clinic under the name of a "Thompson's program". Unfortunately, I could not attend it myself because there was a two-months long queue to enter the program, and I was leaving the US earlier. It took me a long time to find out what this program means, because, apparently, it is a Mayo Clinic know-how and they do not mention it much outside the Clinic walls. Recently, I found a scientific publication of Dr. Thompson and his colleagues dedicated to this program. It is published in the journal "Parkinsonism and Related Disorders" in 2012 under the title "Functional Movement Disorders: Successful Treatment with a Physical Therapy Rehabilitation Protocol". The treatment included those with functional gait disorders, hyperkinetic disorders and paresis, there is a video attached to the article demonstrating the treatment and its outcome. I can provide anyone interested with the article electronic copy. I also hope that the FND patients in the US might have a chance to be referred to the Mayo Clinic for this program. It is located at the Department of Physical Medicine and Rehabilitation at the Mayo Clinic, Rochester, MN and includes generally five days of intensive rehabilitation directed at the brain reprogramming towards correct motor signals. If you have questions about this protocol, please write to my e-mail [e-mail]. Best wishes to everybody. Svetlana.

[Olyffe]

Hi could you please send me the details of the mayo clinic xx thank you xx

[jst4tdy in reply to Olyffe]

Diyto - can I please get the info got Dr. Thompson at the Mayo. Clinic? Thanks.

[kotovasv in reply to jst4tdy]

Hi, if you would like me to send the article, please e-mail me at [e-mail]. I can not send documents through this website.

[kotovasv]

Hi Olyffe, you did not mention your e-mail - or - e-mail me directly to [e-mail]. Svetlana.

[BlazerFND]

I just went through this program and I was really amazed the results. The severe spasms in my legs are now under control and I'm able to walk slowly almost normally.

I was able to get in on very short notice as an international Mayo patient and they had me starting the next day for an intensive week.

[cgarff in reply to BlazerFND]

BlazerFND, how are you doing now after the treatment at Mayo? I was offered a similar treatment from a Dr. in KY that trained at Mayo and started her own group. However I could not get my insurance to cooperate with me. They would not approve or deny the treatment, and said I could go at my own risk. So I was not able to go due to financial risk of paying for the hospital stay for a week. I would love to know how you are doing now, maybe I could still fight for treatment if I had examples to help me.

[pickleweed in reply to cgarff]

If you pay cash at Mayo in Rochester, I believe the cost is $3000 for the 1-week program plus $810 for an initial neurology evaluation, based on my phone call to them in September 2018, phone number [phone]. The 1-week program at Frazier Rehab costs about $11,000, in addition to the cost of a prior medical evaluation that costs under $1000.

[kotovasv]

Hi BlazerFND, I wonder, what the price of this program is for an international patient.

[pickleweed in reply to kotovasv]

At Mayo in Rochester, I believe the cost is $3000 for the 1-week program plus $810 for an initial neurology evaluation, based on my phone call to them in September 2018, phone number [phone].

[MyRomen]

Please send more information

My movement is in my face

[pickleweed in reply to MyRomen]

If you can, MyRomen, you might want to see neurologist Dr. Alfonso Fasano at Morton and Gloria Shulman Movement Disorders Clinic at Toronto Western Hospital and Division of Neurology, University of Toronto, Ontario, Canada. He wrote a chapter about facial functional movement disorders (FMD). I don't know if he is good at remediating facial FMDs, though.

You could also call Mayo in Minnesota at [phone].

[poppymom23]

I know this is an older thread, but to update things, I tried to get an appointment so I could get into the FND clinic at Mayo. They took down a bunch of clinical information and told me a doctor would review it and get back with me in 2-3 weeks to tell me if I was going to be offered an appointment or not. I got an email 2 days later stating I was not going to be offered an appointment at all. No explanation.

[Jg1264]

My son was diagnosed this may with fnd that causes tics cramping and paralysis. We called Mayo for help and they turned us down in their program. Said they had nothing to offer us and that they have way more people than they can see but good luck.