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Moyamoya Related Topics >> Moyamoya Related Information and Support >> Side Affects
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Message started by Kathy S on Oct 19th, 2017 at 1:24pm

Title: Side Affects
Post by Kathy S on Oct 19th, 2017 at 1:24pm
I have surgery 3 years ago I had direct and indirect surgery on my left side. My MRI came back that it's good and as of now I don't have to have the right side done yet. But I wanted to see if anyone is having the same issues as me. I feel the doctors are brushing my symptoms off. I already have tight and pain on my left side of my head and on the surgery area my head has a indent. I have weakness and pain in my right hand and foot. I am lightheaded even when laying down. There is never a day I feel normal. I have a new issues that my feet swell and feeling of burning but my feet are not hot to touch. It's painful and tingling that goes up to my knees now. I feel like I am going crazy because some things I read people say how great they feel after. I am tired all the time and depressed. I have to make myself get up to go to work. I don't know what else to do. Anyone having problems like this or something else?

Title: Re: Side Affects
Post by corynski on Jan 15th, 2018 at 1:39pm
greetings Kathy S....
It is not I but my son William (aged 46) who has moyamoya and many of the same problems you have.  He just called me asking for help and I don't know where to turn.  I have posted many previous thoughts and worries regarding William that you might research on this site, but briefly he had both sides of his head operated on 4 years ago and still is photosensitive and has ringing in his ears.  His medications don't really help, and he doesn't work now.  And it's been 4 years now since the operations, and he has also had a major heart surgery a year ago.  My mission at the moment is to try to help him, in whatever way I can.  He said his doctor cut off his medication and they just don't understand moya-moya... which is likely as no one seems to understand it.
William is in Lake Worth Florida and I am near Knoxville, Tn.  I just talked with a nurse in Nashville with Dr. Miracle and got him an appointment in Feb for a consultation.
Yes, please post and let me know more about your situation.

charley

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