Saturday, April 12, 2008

Technical Difficulties Please Stand By

Since it looks like it will still be awhile before I'm up to reading trashy books at any sort of speed, I thought I would post a little explanation of my health condition, surgery etc.

In October of 2007 I found out that I have moyamoya disease. How did I get a condition with such an awesome name, well I guess I'm just lucky. Moyamoya is a relatively rare disease where (typically) the internal carotid arteries (main supply of blood to brain) narrow over time until they completely close off. I was lucky to present with a small stroke that caused some loss of vision. I say lucky because my brain re-wired itself in a couple months to compensate for the lost brain power and my vision returned to the same as before the stroke.

Moyamoya means roughly 'puff of smoke' in Japanese, which I'm told is exactly what it looks like on an angiogram. There is no known cause of moyamoya and no medical treatment. There are re-vascularization surgeries that involve drilling open your skull and bringing blood from some other artery into the brain, effectively by-passing the blocked carotid. I was sort of reluctant to just jump into that solution however.

So my husband and I did a couple months of research, pursued a oxygen perfusion test (PET scan at Washington University Medical School) to see if my brain was actually in any distress, and then had to weigh the risks of surgery against my personal version of moyamoya. I knew I was having some TIA's (temporary ischemic attacks) which wasn't a good sign, but my vertebral arteries that come up the back of the neck to the brain were very large compared to most people and seemed to have compensated for the lack of blood flow up front. In the end the PET scan confirmed that the right side of my brain was not getting as much oxygen as would be ideal, so we decided to pursue surgery.

Standford Medical Center has a neurosurgeon named Gary Steinberg who has been treating adult and pediatric moyamoya patients since the early 1990's. While re-vascularization surgeries are a fairly common neurosurgery, being a moyamoya brain adds a level of complication to your anesthesia that you really want your doctors to be familiar with. So with the blessing of our insurance company, thank goodness, off we went to Stanford.

March 19th I let them cut open the right side of my head, take my temporal artery, cut a hole in my skull and sew it to the middle cerebral artery in my brain. Then they closed up my skull with some cool titanium plates, sewed up my temporal muscle (think chewing) and stapled up my skin. On March 25th I let them do it again on the left side. Two and a half weeks later, my energy is still pretty low, and I have a constant low level headache. I'm still taking 400 mg of ibuprofen every six hours. Truthfully I can do most anything, just computer, reading, thinking too hard, getting my kids ready for school in the morning, all give me a whopper of a headache. Which is what posting this has given me. I hope I haven't given you one too.

4 comments:

Marg said...

My goodness...that's more than a technical difficulty.

Here's hoping that the operation was a success and that you have a full recovery.

Thinking of you and your family.

Anne said...

Hey, I'm just impressed that you're back to using Twitter! Want to know the best way to cure a headache? Pop Rocks! Yep, yep. Does the trick every time.

Heloise (& Abelard) said...

Thanks Marg, according to the doctors everything so far is very normal.

Anne, I just happen to have some pop rocks, are you sure about this cure?

Heloise (& Abelard) said...

Just an update, week five after surgery and I would say I'm almost back to normal. Still tired, but very close to a normal tired. Yea!