I've been reading the messages on this wonderful website for the last several months. Thank you for sharing your wonderfully hopefull and helpful information.  Because of  what I have learned here, I called Dr. Gary Steinberg's office. on a Friday, they received my images on Monday morning, they were reviewed in the weekly conference that evening and I received a call at 6:30PM the same evening from Teresa Bell-Stevens telling me that the diagnosis is Moyamoya, that I need by-pass surgery on both sides and would be receiving a call within the week regarding dates for diagnostic tests and surgeries. Wow - what an amazing response!

I'd experienced tingling and numbness along my left thumb, index finger several times this Spring, but on July 6th my left upper lip was numb for several minutes. I went to the local ER where they did a CAT scan which showed nothing, , then saw my family doctor who ordered an MRI/MRA.  I had the procedure a week or so later and was just turning into the ferry line afterwards (I live on Whidbey Island in Washigton State) when I received an urgent call from my doctor regarding the blocked and narrowed arteries. He scheduled and appointment with a neurologist in Everett. I saw him a week or two later. He was the first to mention the possibility of Moyamoya. He sent me to Harborview Stroke Clinic in Seattle. The Neurologist there ordered non-invasive Doppler studies and dis a physical examination. He then scheduled 4 vessel angiogram for the next week and a follow-up appointment for one MONTH later. The results of diagnostic tests were presented to a stroke conference at Harborview that Friday evening - then my neurologist left the country for two weeks and left me in the dark...

His wonderful assistant finally got an email response from him a week and a half later - He told her I was to continue taking the baby aspirin and platlete thinner and no other treament was recommended at that time. When he returned to the  country, he called me, discussed the angiogram results. He said I had atherosclerosis, and ordered a lumbar puncture and some additional blood tests. We met again a month after my first appointment.

Meanwhile, I found this website and gathered copies of ALL of my edical records and diagnostic tests from every one of my previous and current doctors over the last 3-5 years - it cost me a bit, but was well worth it.

At my appointment on September 26th, I brought a copy of an echocardiogram done by a physician who believed that my mytral valve prolapse was a wrong diagnosis and thus there was no need to take antibiotics before dental appointments. Well, that test proved that the mytral valve was fine, every other valve wasn't and the aortic septum was aneurysmal. But the neurologist didn't think it was of any importance.  He said I might want to mention in to my family physician. He again told me to continue with my medications, hreviewed the symyptoms of stroke and told me to get myself to the ER when I next experience one.  When I asked what other options were available, he said that the literature showed that by-pass suregery was ineffective and that when I have another stroke they might consider stenting the occluded MCA - he had known of people who had not expereinced another stroke for as long a three years! Wow - what a comforting prognosis...

I went home to reearch more on the internet and made a trip to the University of Washington Health Sciences Libray so that I could read for free and make copies of the complete articles I was finding only abstracts of on the internet. Armed with this information on October 1st, I made an appointment to see Dr. David Newell at Swedish Neurosciences Institutue in Seattle on October 16th. He has performed over 250 STA-MCA by-pass surgeries and written and number of journal articles regarding Moyamoya and the various surgeries. I then contacted Dr. Steinberg's office on October 5th.

Dr. Steinberg made the diagnosis of Moyamoya, and on October 16th Dr. David Newell confirmed the diagnosis. He told me that if I had atherosclerosis, there would be evidence of it throughout my body, not in the cerebral ateries alone. (Forgot to mention that I took the old echocardiogram report to my cardiologist, who immediately performed a TEE to make sure there were no holes in my aortic septum and to look for athersclerosis - no holes and no plaque).

Soooo, I fly to Stanford on the 25th, for tests and then an STA-MCA by-pass on one side October 31st and on the other side November 7th. It's been a long, slow process geting to this day. But, I truly believe that I've found an angel in Dr. Gary Steinberg and his excellent staff and that all will be well.

Kim Tiller

P.S. I fired the Harborview neurologist and will be following up with the Dr. Likowsky at the Swedish Neuroscience Institute in Seattle.

Thank you for the prayers, Mar - I really appreciate it. If not for the great advice given by all who have written to this site, I might not have been as diligent in following through with my search for the right diagnosis and treatment. I am so very thankful to all who has shared their stories and information about Moyamoya disease.

Now I'm just trying to keep it all together until the surgery. I had a blood transfusion last Wednesday - that was a strange experience. I've had a pretty common problem with uterine fibroids and heavy menses for the last couple of years - hoping menopause will solve it soon - but not yet. My hematocrit and iron levels got too low. Will have these checked again on Tuesday. I have a great family doctor who is keeping in touch with Dr. Steinberg's staff, so should hear back before I leave on Thursday. Kind of feel like I'm on a roller coaster ride.

Kim

Hi Kim,
Congratulations in being so proactive in your determination to get answers!! It is so refreshing to see someone who actually researches and follows the advice available.
I know everything will go smoothly with the STA-MCA bypasses.
Best wishes Moira

Hi Kim,

It's good to see you posting here and, as you can see, there are some wonderful folks who frequent this site.  You'll have alot of support through thought and prayer from people you've never even met!

I'm very much looking forward to meeting you.  Have a safe trip south, and I'll come find you in between tests towards the end of the week.

Jill (in Dr. Steinberg's office)

KTiller wrote on Oct 23^rd, 2007 at 1:48am:

Sadly, I've heard MM patients being told they are NOT candidates for surgery more often than I've heard they are. The key is research, and getting a doctor who is experienced with this rare disease, and then the facts speak for themselves. Delay in treatment is the particular pitfall we see because of the lack of experience and understanding in the medical community. We see and hear all too often, many doctors tell their patients not to have surgery because it’s too risky, but what many new patients do not know is, even though you may like your doctor and they may even be a very good neurologist/neurosurgeon, BUT, many times it’s just that they are not educated enough about MM “the disease itself” which actually makes the "risk" more about their lack of knowledge of MM, rather than actual risk to the patient. That’s what I’ve found over the years here.

Mar

Thanks, Trina - it nice to know I'm not the only one. Seems to me it's critical for a doctor to provide all of the options along with the risks and odds of success and failure to their patient (he has or should have more knowledge than me) - then let the patient make the choice. My primary care, ob/gyn, and cardiologist all do this. They're are all about the same age as me, whereas the neurologist was much younger - maybe he simply needs more experience. But, he won't be practicing on me,

Tomorrow morning, I leave for Stanford. Kind of scared, but sure that I've made the right choice for me.
Kim