眼瞼けいれん、ジストニア治療の道のり

私自身が10年間、苦しんだ、
「演奏家に多い」と言われる病気の、手術と治療について記しています。

Dystonia (English ver.)

short explanation of Dystonia in English...

To my friends who may be concerned .

Thank you for sharing your experience and your considerations.

My doctor is considered one of the best brain surgeons , when it comes to my case .

It is very rare disease called ’’Dystonia ”

It is so rare that even the doctors barely know about the disease . ( they might have heard of it )

My doctor is certainly one of the best in the world .

He has been performing operations and curing dystonia for over 2 decades
and they are so certain that they can FIx it !!
( it is just a matter of time for the doctors , that they are not worried at all )

I’m just a  little frustrated only because I have booked some gigs that I have to make up decisions whether to cancel all of them or just wait and see for a little while ( leave them at that, for now) ,

and I’m frustrated that when you book a gig , there are so many people involved , that I should not be selfish , and If I have to give all the gigs up for now, I should make  the decisions as soon as I can.

Other than that , I totally trust my doctors !!!

I think I will wait for another week , until the next appointment with the doctors , and ask them  their opinions .

If they say it is ” a matter of time , my question is ” How long ? and when ?’

thank you again for your consideration, and I really appreciate it .

below is a short explanation about ” dystonia ”
( in lay-man’s term , because I’m the one who’s writing it )

Much LOVE Rhythm K.
==========

Dystonia , is a disease that only can be cured by  brain surgery .

However it does NOT mean that there is something wrong with your brain .

as a matter of fact , there was nothing wrong with my brain at all
( Good News )

they say that 20% of the patients of dystonia are musicians .and some ball players and some athletes .

while we do ” certain movements repeatedly ” such as playing the guitar or playing the piano etc.

all of a sudden , weird movements of the muscles occur without /against your will .

such as

★ your fingers become twisted that you can not play

★ your eyes begin to close-shut , that you can not see
( starting with tics of your eyes or your face, and then when it gets worse , your eyes begin to close -shut )

★ tics of your hands /feet etc

and so on.

a lot of people would think ( and so did I )

that

1,there was something wrong with the hand or eyes or feet ,
and

2  would keep getting shots on your hand / feet/ face , and/or

3  would keep getting unnecessary operations on wherever he/she feels  wrong .

( I did that , too.
I had 2 operations and kept getting shots over the years with NO USE )

but IT IS NOT That !!!

it is your brain which started giving you ” a wrong order ” to do it .

So the way ( and the Only way ) to fix it is to get a brain surgery .

in my case I had a brain surgery and had another one, to put pacemakers in my chests to control my brain to prevent my brain from sending wrong signals .

So if something like this ever happens to you ,
I really would recommend that you go see a doctor who knows about Dystonia , before you cut ( do an operation ) your hands/feet. or face.
( you have to go to ” Neurosurgery ” )

if it is not dystonia , that is a good news ,
you can not loose anything by just seeing a doctor.

A lot of players have given up their careers , because of dystonia ,
and because they did not know that there is a way to cure the disease.

and Because they did not know the doctor who knows about dystonia .

Only thing I can say is that
Dr, Taira knows what exactly dystonia is , and
not only that, he knows how to FIX IT !!!!!

I truly hope more people can be saved by Dr, Taira,
and Not give up their careers and hopes .

Dystonia HP  ↓ 

http://www.ninds.nih.gov/disorders/dystonias/detail_dystonias.htm