I am 51 and was diagnosed with Moyamoya. Surgery is scheduled. Would like to chat with someone

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It's new to me can someone share some of their experiences

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  • Posted

    Iam 56 and was diagnosed on Nov 28 this year. If nothing else Moyamoya is a fun name for a disease.  Makes us sound very exotic don't you think? When's your sugery?

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    • Posted

      Wow. things move quickly how's your recovery going? Well I hope. I will be seeing a new neuro next week and hope we will discuss my options.

      How long did your diagnosis take? I've been at it for almost 3 years. where in the world are you located? I'm in vancouver Canada

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    • Posted

      I had my first stroke in June and the second one in August. It took three months. I had to be hospitalized three times and stayed at two different hospital . The hospital Augusta University is where I was diagnosed and whet I had my surgery, They drilled two holes in my skull and rerouted my vein. I will go for my follow up on the 7th of December, I was told it may take 3 to6 months to tell if the blood rerouted to the new vein. I feel ok, my only issue is from the stroke, I can not use my left arm and hand and I have to walk with a cane because I had to learn how to walk again. I have ot/pt come to my home. I hope my information was helpful. I am in Augusta Georgia

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    • Posted

      I was writting a book and this site timed out, I'll try again. Thank you for your response. so nice to talk to someone who understands.

      I;m assuming your strokes were hemoragic? mine have been ischemic and spparently there Have been 'several' I never felt them just the residual effects eventualy.  My symptoms included left sided weakness lightheadedness, imbalance and dropping things followed by the appearsnce of a bizzarre movement disorder My GP thought it was MS and referred me to a neuro who thought my symptoms were not neurological but psycological. My GP argued and an MRI was ordered which showed the 'several old strokes and severe white matter disease. I was advised totake asprin and to quit smoking then sent on my way. a few months later I was using a cane as my foot dragging and imbalance were worse Now my GP referred me to the MS Clinic at the University of British Colunbia.  MS was ruled out and another MRI was ordered. The Radiologist saw the MoyaMoya vessels and the rest is history. Next week I will Attend the stroke Centre to see what they have planned for me

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    • Posted

      They though I had ms as well and they thought I was very depressed. But in the end it was Moyamoya. Keep me posted. Because you not in this alone
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    • Posted

      Hi Brenda. How was your followup yesterday? All good I hope.Are you all healed up? can you feel blood going to the right places?  I saw my new guy yesterday and he has reffered me to a surgeon I should have an appointment next eeek. Oh My! It's snowing and cold here, I suppose it;s pretty but slippery and dangerous for the cane/walker set

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    • Posted

      Yes my appointment was successful, my wound is healed. The doctor said that it takes anywhere from 6 months to 1 year for the vein to plant itself and for blood to flow through it, He said that he would do a MRI and angiogram in a year unless I have some issues before. He also said if I feel like it I can go back to work. The scariest thing is he said I could have another stroke while waiting on the vein to attach. I am trusting in God that it will not take long for the vein to do what it needs to do. I pray that your surgeon will give you good news. Keep me posted.
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    • Posted

      'hi brenda sorry for the delay. hope your holiday season was enjoyable. Are you excited to be going back to work

      /

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    • Posted

      I saw my surgeon on Dec 20th, he's about 12 years old,,,

      he arranged an angiogram for this coming Friday and is looking at surgery near the end of january. I'm more scared of the angiogram than the surgery. My last MRI used contrast and I suffered a severe reaction. the angiogram uses a different contrast mtdia but still I'm just scared. I suppose that;s natural. All these tests are worse than the disease...  my young surgeon who I call Dr. Handsom says i must quit smoking, at first I said you must be joking but I'm working on it and its not that hard. A girl does what a dirl has to do.

      Wishing you the very best in the coming new year!

      some of this has disapprared so i will press send while i'm ahead and maybe try again tomorrow.

      i;

      i

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    • Posted

      Hi Brenda Hoping you sre well and surviving the weather. My angio was booked and delayed 4 times finally had it on Monday the 23rd. A lot of sedatives and I got through it with no complications.  Next week Tues and Thurs I'm to go for my Diamox challenge.  Again I'm very afraid. Did you have that one?  I can't find much info on line as to what to expect other than it's not pleasant.  More sedatives for me I guess, They also have proposed to tape up my toes as I wiggle them when I'm anxious and don't think I can control them for the required 40 minutes smile  Surgery will be booked soon after the test(s)

      Are you okay? Are you back at eork?

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  • Posted

    Hi Brebda.  My surgery id booked for March 17th. He will be doing an STA MCA bypass on the right side, He tells ne for now my body seems to be taking care of the lsft side on its own so may not need surgery on that side right away unless I start having symptoms on the right,
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    • Posted

      Hi Brenda,

      Hey Brenda,

      had my surgery and survived. Hope things are well with you. My follow up is not scheduled til June 6th which I find a long stretch but oh well. In the meantime my staples have been pulled and all seems to be going well.

      Hope my spelling continues to improve as wellsmile  Take care,

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