G'day all. I have been having health issues (headaches, left sided numbness/pins and needles and short term memory loss for approx 9 mths. I've had mri, mra, ct, lumbar puncture and a catherter angigogram a few weeks ago which gave an indication of moya moya.  Earlier mri/ct showed an artery that is extremley small and almost blocked with surrounding veins larger than normal as they are trying to cope with blood flow. My vascular specialist has ordered a ct brain profusion study which I am having on Monday. Does anyone know what the ct profusion study is and if it is used as a definite diagnosis for moya moya? I am thankful to finding this site as my family doctor who gave me the indication of having moya moya knows nothing about it. My other question is if there are any other canadian moya moya sufferers on here? I haven't found any indication of doctors who treat or who specialize in surgery for moya moya of adults in canada? I am worried what will happen if I am diagnosed about getting treatment/surgery if no one in canada specializes in it? Any feedback or advice would be gratefully appreciated. Thankyou, Beck.

Hi Beck,

Welcome to our MM family!

I’m sorry to hear you have MM. It certainly sounds as though you have many of the symptoms, so I’m really glad you found us. There is a wealth of information here, and knowledge is sooooo important and even life saving when you’re in a world where many in the medical community do NOT know enough about this rare disease to steer you in the best direction for your specific case. So asking questions and researching this disease is very wise and we’re here to help you in any way we can.

The tests you went through is the general process for evaluating your diagnosis. The perfusion study shows the perfusion (or flow) of blood through the brain. The angio is the actual diagnostic test for MMD because it’s the only test that can actually see the mm vessels in your brain.

I can’t emphasize enough how important it is that you find a doctor that has REAL experience in treating MMD. This is so important because of the many factors involved. MMD can be successfully treated, IF you have a doctor/facility who has experience treating this disease. MM is a progressive disease, it gets worse over time, so you’re always at risk for a stroke with MMD, so prompt treatment is vital. Delay in treatment is a pitfall we see all too often and strokes will occur.

In your research you will find that there are only two MM experts in our country that deal with MM on a daily basis. One is in Boston, Dr. Scott, he’s a pediatric MM specialist and Dr. Steinberg, at Stanford, California, and he’s both a pediatric/adult expert. Both experts have done hundreds of successful surgeries for MMD. So many have to travel to get their expertise. Surgical management is the ONLY treatment for MMD, no medications stop the narrowing or the MM vessels from developing, so surgery introduces a new blood flow to get the proper blood to your brain and avoid the stroke waiting to happen.

I don’t know if you viewed this Stanford video under Links on the website, but if not, this may be helpful in your research.

Stanford video - Moyamoya
http://www.moyamoya.com/stanfordvideo/moyamoya2.wmv

Many also contact a MM specialist for a second opinion. You simply send the expert a copy of your films (MRI/MRA Angiogram, etc) and they call you after they read those films, with their expert opinion, usually for free, so you’ll know if you’re on the correct path for your case. So getting copies of all films now is a smart thing to do when searching for a MM experienced doctor, which is a MUST for success.

I hope this information helped you. Feel free to ask away. There are some wonderful people here who traveled this same road. No question is too small.

Please keep us posted…

God Bless,

Mar

Hi moyamoi, thank you so much for your reply.  ;
Where in Australia are you? I was born and raised in Melbourne, I moved to Canada 9 yrs ago.
Thank you for checking through the site for further info on surgeons etc for me. I did see the Calgary doctor but thought he was only apediatric doctor. I do hope to connect with some other Canadians on here especially any in Vancouver to find out which doctor they have seen. Thank you again, Beck

Quote:

Good morning Gazou,
I'm sorry you've had this experience with yoru child. I couldn't imagine going through it with my kids.
I'm on Vancouver Island but have been having to travel to Victoria and Vancouver for the tests. The vascular specialist I'm seeing is Dr Teal in Vancouver and Vancouver is also where they are sending me for the CT scan on Monday. I'm going to go through some previous posts to try and find anyone in Vancouver especially. Thank you for the suggestion. I was worried I would have to travel out of country for treatment. Have a wonderful day, Beck   ;

gazou wrote on Sep 22^nd, 2007 at 10:27am:

Hello fellow Canadian

I just had the STA-MCA bypass surgery on September 11.  I live an hour from Ottawa where the surgery was performed.  The surgery was performed by Dr. John Sinclair out of the Ottawa Civic Hospital.  i think he did a great job.  i feel stronger every day.  Also Dr. Sinclair trained under Dr. Steinburg at Stanford University for four years so i was very comfortable with his experience.  Also check out the topic surgeons with bypass experience.  i thought i saw the name of another doctor in Alberta.  There may be more Canadian doctors on that message board.  Good luck.  I also had the ct perfusion scan. it measures blood flow and determines whether you have sufficient blood flow on that side of the brain.  if it shows a low percentage of blood flow they will recommend the surgery.  that's how i understood it.  i only had between 55-60% so the surgery was necessary.  hope to hear back from you. Also the Ottawa Civic Hospital gives amazing post surgery care.

Smitty39

Argh.. that should read weakness in my *right* side... it's gotta be Monday!