NON Moyamoya Related Topics >> Daily Jibber Jabber >> 11 months post surgery and symptoms are back

Message started by notly on Aug 8th, 2018 at 9:54pm

Title: 11 months post surgery and symptoms are back
Post by notly on Aug 8th, 2018 at 9:54pm
Hi all,

I am a 27 year old woman, diagnosed with Moyamoya about a year and a half ago after having 3 strokes. I had unilateral STA-MCA bypass on the right side in February 2013 with the neurosurgery team at University of Miami. Surgery went well. I was having tingling everyday before surgery, and I had nothing for about 6 months, a TIA in June (nothing too bad just more scary than anything) and then I didn't have any symptoms for a long time.

Last week I had a bad TIA, with symptoms as strong as the stroke I had in the past. Plus I couldn't speak correctly, and bad facial drooping too, plus numbness and tingling, in my left side of my face and left hand (especially the pinky and ring fingers). I went to the hospital and the CT showed "there might be some stenosis of the bypass artery." Getting an angiogram on Monday morning to find out more.

I am scared. If it were symptoms on the other side I wouldn't be as upset about it, because I know that in all likelihood I will have to have surgery on the left side one day as well. But I didn't expect symptoms to come back on the same side, stronger than they have been since I had a stroke.

Has anyone else out there had this happen? Any ideas if they can/will want to do surgery on the same side again? Other treatment options?

I am already on asprin, verapamil (in an attempt to dilate my arteries) and zocor as a precaution.

I'm feeling rather hopeless at the moment; I really don't want to continue to have TIA and strokes, because I know I've been lucky so far in that I have regained my left side functioning, but that won't always be the case if we can't get this under control.

Thanks for any info!

Title: Re: 11 months post surgery and symptoms are back
Post by corynski on Aug 13th, 2018 at 11:12am
Greetings...... My name is Charles Coryn, and I'm William Coryn's father..... I've written many times over the years here, but I don't get back often.  I write today regarding the increasing Tinnitus symptoms that he is experiencing.  It has become a terrible distraction and is affecting his sleep also now.  I wish I could be of some help to you.... let me know if I can answer any questions.  William has had progressive problems, mostly from his original Rubella problem at birth.  He had heart surgery at 6 months of age, but the Moyamoya was never discovered. It wasn't diagnosed until he had grown and he was well into his thirties, when he had surgery on both sides of his head about 5 years ago.  Then about a year ago he was hospitalized following a stroke, and had a heart valve replaced, from which he's recovered well, and only within the last month or so has this serious Tinnitus happened.  I'm now searching for info and a specialist doctor in South Florida to treat him.  Willy lives in Lake Worth.  He had his surgeries done by Dr. Mericle in Nashville, Tn.  His recovery was broken by various other medical problems such as excessive acid reflux, and a 'bright lights' problem, I forget the name of it, photosensitive something, and now this.
I had moved to Tn from florida about 12 years ago and have great difficulty helping Willy at this distance away.  He's coming back up for an angiogram next month in Nashville I think.  Moyamoya is so rare that doctors always look confused when we mention it in their offices and in the ER rooms.  And as you likely know it's often difficult to get an interpreter when you need one.   
I regret this website doesn't get more traffic.  There is information on the web, some good info from Japan, but locally there are so few doctors familiar with Moyamoya.
Best of luck to you..... Let me know how you make out......

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