Dear All,

I've mentioned numb patches and grey outs on the website before but am wondering if any of you have had a slight variation of the two.

Every now and then I get numb patches in my hand and face. They are only very small and localised patches and it goes away within minutes. Last night I was sat at my computer and the tip of my left thumb went numb. This spread a bit further down my thumb. I consider this as 'normal' now and wasn't that bothered by it. It went away after a minute or so but then when I stood up, it came back almost immediately. Am just wondering if this is purely coincidental or whether this is linked to my grey outs. Quick description of a grey out - sometimes when I get up from lying or sitting down, my vision goes grey. If it's a bad one, my vision starts going black, my hearing starts fading and my arm(s) and leg(s) go heavy. This only lasts a few seconds.

My doctors don't seem worried by either my numb patches or grey outs and I'm not even sure if they think it's related to my Moya Moya but I can't help but suspect that they are. A number of you have mentioned numbness post surgery but has anyone linked it to standing up too quickly? Any ideas or am I being a hypochondriac?

My left side doesn't feel 'right' today and my BP was slightly raised when I had it checked at my flu jab appointment this morning.

Any suggestions would be much appreciated.

Best wishes to you all,

Roz

Hi Emily,

Thanks for your reply.

I've been reading your posts and what you've described as your current symptoms are exactly what I used to have before my surgeries except I was fortunate enough not to have suffered a stroke (touch wood). I used to lose use of either side but it didn't progress to affect my breathing. These episodes would last between 5-40 minutes - the bad ones affecting my speech. Then I'd be 'draggy' for the rest of the day or a day or so afterwards.

Just want to wish you all the best for your surgeries. I had mine done nine years ago now. This took away the full on symptoms that you're having now and ofcourse dramatically reduced my risk of stroke. I hope they can do the same for you.

With regards to my current symptoms, they are only very very minor compared to what used to happen so I'm willing to put up with it. I will mention it to my local neurologist when I see him in a few weeks though.

Roz

Good morning Roz,

My husband just last week had something similar. I had just gotten back from a walk and he was at the door with a fearful look on his face. I asked what was wrong and he said that for about 5 minutes the right side of his face seemed to of been stiff and he had tingling on the left side. He also said that he wasn't able to really talk and had a hard time moving. And that his vision got real blurry. He said he thought that maybe he had a stroke. I told him I didn't think so, because the surgery was to have him out of the danger zone stroke wise.

We were thinking that maybe it was a TIA or seizure. It is hard for us to know really about anything he has been experiencing AFTER his surgery, because he didn't have ANY symptoms of MM BEFORE his surgery with the exception of migraines and a little tingling in his fingers. So all these things that are happening now, AFTER the surgery have us completely fearful of what more could happen.

Our understanding was that after the surgery he should be getting better, which he is with his migraines but he seems to have more things happening AFTER the surgery then before????

If this has been happening to others could you let us know.

Terry

Hi Shan and Terry,

Thanks for your posts.

With regards to the reason why I think my neurologist (main one in London) is not worried about grey outs and numb patches is because I had an angiogram to investigate the grey outs when they first started happening a couple of years after the surgery and as far as I know, my neurologist back then was happy with those results. I also had an MRI/MRA back in August (this year) which was normal. Well, I say normal because the letter they sent me said it was normal but (am going to quote from my letter) "confirmed absence of filling of the terminal segments of the internal carotid arteries, consistent with Moyamoya...but there was good collateral filling of the other cerebral vessels." It also goes on to say that "perfusion MRI showed some delay in the arrival of the contrast bolus but no other abnormalities." My neurologist reassured me that everything is fine.

Shan, the numbness you're describing in your little finger and ring finger is the other patch of numbness I get in my hands. I'm sorry to hear that your mum is also having grey outs. I will be interested to know how the rest of her results turn out. As for check ups I do have yearly consultations with my neurologist in London and have also started seeing a local neurologist where I live - they have been six month appointments. I think tests will only be ordered if I have further symptoms. The MRI was routine but pushed forward because of the dizzy spells I had.

Terry, am sorry to hear that your husband has also had an episode. The tingly then numb patches in my face only happen to a patch just above the side of my top lip. Pre surgery, when I had one of my bad episodes, it would affect the whole side of my face but it would usually start in my hand first, travel up my arm and down my leg before it reached my face (if it was a bad one). As I said, the grey outs have been happening only since having surgery but as with these and the numb patches, I would rather have this than have the threat of a stroke hanging over me. Have you and your husband spoken to his neurologist/sugeon regarding this episode last week? As this is new and affecting more than just a small patch, I'd get it checked out just to be on the safe side.

Best wishes to you all.

Roz

Hi Sara,

Thanks very much for your post. It has made me feel a lot more better about things. Like I've said to you before, I'm OK most of the time - it's only when things start playing up that my fears creep back again. I think last night and today was one of those times!

The fact that you are 15 years post op and having exactly the same symptoms is reassuring and yes, wow, even the same odd numb patches! You are an inspiration to us all especially having had little Abigail.

Thank you Sara

Roz