Hi everyone!

My son, Ihsan, was diagnosed with MM around two/three weeks ago - who knows, time went all strange...

He is 10, doing karate, well active, physically and neurologically and has a brilliant sense of humour! On the flip side, he has BP 120/70, going to 140/90 under stress and likes to faff when things need doing.

I have been reading the posts and have basically got an idea of what is going on / what is likely to happen.

We are waiting for a referral to specialists in Birmingham Children's Hospital and Great Ormond Street Hospital, London.

My concern at this stage is regarding surgery options. In Birmingham, the procedure involves multiple Burr holes, in London its a direct STA-MCA bypass. Has anyone had either of these for their children? What has the result been like?

I have read about members suffering from various post-operative conditions, eg twitching, fatigue, whooshing and clicking sounds in the brain. My son has had numerous TIA's though no stroke (yet...). Have members had these post operative effects without having had prior stroke?

Thank you for reading all this. My sanity has been helped loads by the presence of this forum.

Hi Jam   [smiley=wave.gif],

I'm so sorry you had to find us due to circumstances.  We're all here for you, I have made many friends here and they are a true godsend when it comes to support!!  I was diagnosed in 2005 with Moyamoya.  In 2006, I had two (2) STA-MCA bypasses.  Since the surgeries I have not has any adverse post-operative problems.  I've had the "whooshing & clicking" right after the surgeries, but they went away after a few weeks.  As far as the fatigue, I still get winded after a long day or if I'm out in the sun for a long time (it definitely helps to keep hydrated).  My b/p has always been around 118/70 (or around there) if not a little lower.  It went up a little after surgery, but now it's down again. I don't recall having had any TIA's, but had a minor stroke and was medi-vacced to Oahu (Hawaii) where I was diagnosed.  Honestly, I'm not sure if the do STA-MCA's on children.  I was 43 years old when I had my surgeries done.

Aloha  [smiley=hug.gif],
Jan

Hi Jam, [smiley=wave.gif] Welcome to our MM family!

Generally, the preferred surgery for children is the “Indirect” approach, because usually, children don't have large enough arteries for the surgeon to work with, that’s needed in the STA-MCA by-pass surgery.  Also, children are able to grow new networks of arteries much faster than adults. The Burr hole procedure is designed to take advantage of the tendency of the brains of children to attract new blood vessels from any source that is made available by the surgeon.

Every case of MM is different because of each individual’s personal factors and the location in the brain where they’re lacking the proper blood flow. The post-operative symptoms you described are simply symptoms of MMD and can occur before or after surgery and with or without having a prior stroke. MM is likely to cause symptoms such as fatigue, fogginess, reactions to extreme heat, headaches, tingling, confusion (especially when doing many things at a time - easily distracted) etc. This is all due to the body having such a hard time getting the blood around your brain, due to all the roadwork of vessels trying to get blood to the brain. Things move much slower.

Unfortunately, MM patients are also at a slightly higher risk for seizures, especially if they had a stroke. Tissue in the brain can discharge abnormal electrical charges causing seizures, twitching and so on.

Just recently, another MM patient explained it best to me about that swooshing sound you mentioned. She said it's called “bruit”, which is French, for noise. She said her doctors felt it could have been due to the turbulence of the blood flowing through an obstructed artery, and others have said it’s simply the new blood flow after surgery. So it’s a common thing we hear about with MM patients and part of the disease for many.

The TIA’s are warnings of a stroke that comes with having this disease if you don’t get surgical treatment to help avoid it. I hope and pray your son gets treatment ASAP. Make sure he stays hydrated and watch his physical activities until he sees the doctor.

Please keep us posted and feel free to ask any questions you may have.

Keeping you and your son in my thoughts and prayers.

Mar

Thank you for your replies. My son is 10 and has been having more TIA related symptoms (numbness in face and limbs, headaches etc.) since around April this year. We think he may have been having the odd problems since 2004. Since he has not had an angiogram, just an MRI scan, its hard to know how bad things may be.

So, we wait for the process to move forward. It is not encouraging so far, but I suppose patience is the thing; once the ball starts rolling, i'm sure things will happen more smoothly. I suppose it would have been nice to have a single point of contact but as it stands we have to shuttle between two hospitals, sometimes we have more news than they do!

Your prayers are well appreciated in this difficult time. May you receive abundant blessings for your kindness.

Jamil