Internet support for those diagnosed with Moyamoya Disease

My name is Daren (DJ) Johnson. I am a 44 year old white male living in Wichita, KS. (I bring up my age and race because I think it is important to this story).

When I was 18 years old, I started suffering from horrible headaches.

In March 2001, I started noticing something unusual I could only describe as "tremors" in my left leg. It happened mostly when I was relaxing. My left leg would quiver, or shake (kind of like when you get a cold chill). The actual tremor would only last for a second, but it was one right after the other for hours at a time. They didn't hurt and they were more annoying than anything when I was trying to go to sleep.

Shortly after the tremors started I started noticing brief periods of numbness in my left hand/fingers/arm. The numbness wouldn't last long, between 15-30 minutes every few days, and then everything would return to normal.

Being an otherwise healthy 34 year old male, I played it off as long as I could. I eventually went to the doctor but didn't make a big deal about it. My doctor wasn't horribly concerned but referred me to an orthopedic specialist thinking it was a pinched nerve in my neck or something.

My case wasn't a high priority so I couldn't get an appointment with the Ortho for several weeks. No biggie, I thought. In the meantime, the tremors and the numbness continued.

I finally saw the Ortho (late April 2001) and he was convinced it wasn't a pinched nerve and wanted to refer me to a Neurologist. Again, I wasn't a high priority so I wasn't going to be able to get into the Neuro's office until late May 2001. Again, no biggie.

One day in early May 2001, I was working outside at my house. I was having the numbness in my hand/fingers that wasn't going away. I suspected that it would go away like it had all of the times before, but when I finally looked down and noticed that two of my fingers were in one of the finger holes in my work gloves, I knew it was time to press the issue!

I went to the doc the next day to let them know things were getting worse. The numbness in my fingers/hand had been there for more than 24 hours now and hadn't come back. We got ahold of the Neuro and got my appointment ASAP.

I saw the Neuro on May 18th, 2001 and I'll NEVER forget the words in his report that absolutely scared the shit out of me. He stated "he probably has a right hemispheric lesion, which could be a mass lesion or an ischemic type lesion".

From that day forward, my appointments were put at the top of the list!

May 20th, extensive bloodwork to rule out any blood diseases. May 23rd, an MRI that showed a problem with my right middle cerebral artery. May 25th, an ultrasound on my carotid arteries. June 12th, a cerebral angiogram that showed the following:

The right internal carotid is quite small and becomes progressively narrower in the supraclinoid segment. There is minimal runoff to the basal ganglia which has an appearance to a 'puff of smoke'.

The left internal carotid is widely patent. However, there is a fair amount of narrowing involving the supraclinoid segment of the left internal carotid artery. Likewise, there is narrowing of the proximal left A1 and proximal left M1 segments. The anterior communicator provides runoff to the right anterior cerebral territory.

Findings are highly suggestive of idiopathic cerebrovascular occlusive disease, otherwise known as 'moyamoya disease'".

Moyamoya Disease? The doctor who read my angiogram gave me the names of a few Neurosurgeons around the country I might be able to check with about the disease knowing there wasn't many of them who had any experience with it.

I immediately got on the internet to see what I could find. I guess I wasn't too surprised that there wasn't much information out there... a few pages here and there, but no real support.

I started researching some of the names that my doctor in Wichita had given me. One name that came up associated in just about everything I found about Moyamoya had Dr. Gary Steinberg's name on it from Stanford University.

I found email addresses for several of the specialists on my list (including Dr. Steinberg) and emailed them all my story. LITERALLY 20 minutes later, I got an email back from Dr. Steinberg. He said it sounded like It could be Moyamoya and asked to see my films. I told him I had the results from all of my test scanned and already online and sent him the address to the page on the internet.

Within the hour, I had another email from Dr. Steinberg saying everything pointed to Moyamoya and he wanted to look at all of my films. I over-nighted them to his office the next day and my first surgery was scheduled a week later for August.

Not surprisingly, NOT ONE SINGLE of the 4 or 5 other doctor's I originally emailed ever got back to me! Go figure....

On August 21st, 2001 I had an STA-MCA bypass on the right side of my brain by Dr. Gary K. Steinberg at Stanford University to re-vascularize the right side of my brain. The surgery went off without a hitch. You can see the pictures of my first surgery on my picture page.

I had a few small TIA's within the first two months after the surgery on the right side of my brain, but they were very small and short. I haven't suffered any more permanent damage on the left side of my body, but the numbness from the original stroke hasn't come back either. Hopefully someday, the feeling in my left fingers will return, but I'm fortunate that the surgery stopped any further damage.

December 2002 - I've just returned from Stanford for my one year follow-up for my surgery. The graft on the right side of my brain is doing WONDERFUL, but it looks like the left side of my brain has finally caught up. I've started to have the same stroke symptoms on the right side of my body (left hemisphere of my brain) and am going back out to Stanford in a couple of weeks (Jan 14th) for the same STA-MCA bypass on the left side of my brain.

January 2003 - As of today (January 2nd 2003), I still do not have the feeling back in the outside three fingers of my left hand as a result from the original stroke. It's something I've learned to deal with over the past year and a half.

The important part for me is that I recognized the TIA symptoms from the previous stroke and was able to let Dr. Steinberg know I was having the same problems on the other side of my body. I'm back on Aggrenox (a blood thinner) because the left side seems to be progressing MUCH FASTER than the right side did. I spent Christmas night in the ER with numbness/weakness on my right side. It eventually went away, but I know permanent damage is soon to follow.

My worst fear is loosing permanent feeling on the right side of my body from another stroke. I'm looking VERY forward to my second surgery so I don't have to worry about any more permanent damage.

I'm at Stanford (Jan 13th) and my surgery is tomorrow morning.  I will post my progress on the Guestbook page. I'll move the story back to this page after it's all over.

February 2003 - My second surgery went just as well as my first surgery. I went into surgery about 1:30pm and came out around 8:30pm. I was awake and alert enough around 5:30am the next morning to make this post in the Guestbook from my bed in the ICU...

"Hi, It's me again! Surgery went AWESOME yesterday! I think they rolled me out last night 8:30 PST I'm laying in my bed in ICU right now making this post. I'm in virtualy NO pain and will be up running around the hospital a little later on this morning. Should be in a "normal" room by noon or so. Thank you for your thoughts and prayers! I'll have some new pictures up this weekend."

I was discharged from the hospital three days later and returned to work two weeks later. All has been well ever since and I've had no more problems.

This is NOT the end... it's just the beginning because now it's time to share my story and help others who say the same thing I once did... "Maui Maui what?"



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