::)

  hI ALL, pLEASE READ TODAYS GUEST BOOK POSTING FOR AN EXAMPLE OF AN AWFUL GROSS SERIES OF MISSED DIAGNOSIS ACCOMPANIED BY SOME AWFUL AND HARMFUL TREATMENTS.
    i THANK tHE lORD THAT i WAS DIAGNOSED IN HOURS.  AFTER READING THAT POST ANYONE THAT HAD A REASONABLE DIAGNOSIS SHOULD BE VERY THANKFUL.  

    fROM WHAT i'VE LEARNED FROM THIS SITE AND MY OWN EXPERIENCE,  iT SEEMS THAT THOSE OF US THAT HAD A MAJOR STROKE WERE TAKEN MORE SERIOUSLY,  WHILE THOSE OF US THAT PRESENTED WITH A VARIETY OF MISCELLANEOUS SYMPTOMS WERE OFTEN SENT FROM DOCTOR TO DOCTOR AND MANY TIMES MIS DIAGNOSED.

    i HOPE THAT THIS SITE EDUCATES BOTH PATIENTS AND DOCTORS ENOUGH to not OVERLOOK mm AS A POSSIBILITY.


eNJOY THE HOLIDAY SEASON!     tOM G

Hi Tom.

I read the Guest Book post and it brought back painful memories.

If I were to document Kevin's sequence of events prior to a major stroke and even 4 years post stroke, and prior to surgery in May of this year, I can not only top that post I can send chills up your spine, make the hair on your neck stand up and curl with the gross misdiagnosis and treatments and even a major surgery wherein they cut a 5 to 7 inch incision in Kevin's neck and then closed it up because they didn't know what they were seeing when they got in there. It is only by the grace of God and the hands of a brilliant neurosurgeon that Kevin is alive today.

You are absolutely correct when you say that anyone with a reasonable diagnosis in a timely manner should thank God that they were most likely spared the horrors that some have experienced with this disease.

We come from a family of medical professionals who are now deseased. I can only imagine what they might be thinking if they were alive today. It is very scarey and as a result, one must be their own advocate.

I will be the first to admit that medicine is not an exact science and therefore, not a perfect science. However, when I read things like the recent Guest Book post, my blood boils. I don't know if it is the difference in medical school teachings or if it is simply the rarity of the disease, which I don't think is rare at all. I believe it is simply undiagnosed and there is not an emphasis in medical school about the disease.

I'm with you all the way when you say "I hope this site educates both doctors and patients enough to not overlook MM as a possibility".

Thanks for the opportunity to share, or in my case, vent the frustrations of Kevin's gross misdiagnosis, undiagnosis, bazaar treatments and unnecessary surgery prior to the "real" surgeries that saved his life and to remind folks who come to this site that MM is nothing to take lightly and there are neurosurgeons, though not many, that do know about the disease and are competent to treat the disease.

God Bless,

Lore

 

i'm not sure which entry you are both talking about... but i started reading the guestbook and there was a lot of entries in there that disturbed me....

i hate the feeling or not-knowing of whether or not i can do absolutely everything that i used to be able to do safely..... i guess there was a few entries in there that re-awoke me to the seriousness of this condition... which i guess i just still haven't accepted....
i mean there's the whole listen-to-your-body thing.... which i most certainly do.... but i mean especially my first "major" stroke.... i was hardly doing anything strenous and had no warning signs........

i have a HUGE list to ask my neurosurgeon this week but there's so many questions that they just can't answer.... or answer with completely over-cautiousness that drives me nuts... hehe


but on the same track, i'm very glad and lucky i got diagnosed so quickly and luckily!!
i moved from brisbane to melbourne in june.... codld winter, with a broken leg.... and i HATED it... planned SO many times to move back.... kept putting it off and noone knew why... went back for a holiday for a month.. had my first 2 strokes (didn't go for any medical treatment or anything.. just partially recovered and kept on going - crazy!) almost threw the towel in and stayed there permanently.... instead almost stayed an extra week and was going to get myself checked out at a local hospital.. tossed a coin and instead went back to melbourne (not knowing why)... two weeks down there and 5 more small strokes..... then a big one and went to hospital and was diagnosed within 3-4 days.....
amazing because if i'd gone to a hospital where i was in QLD, they wouldn't have a clue about Moyamoya.... and would have been very unlikely to do an MRI or anything.. even with my symptoms because i seemed so well recovered.....

so i AM thanking my lucky stars and taking life much slower.... smelling and checking out EVERY flower i pass... taking time for everyone and everything... never chickening out on a swim in a cold ocean on a beautiful day etc.....
and trying to think of what is is that i can do for [the world, people, this place i live in] etc to make it all worthwhile!!

ok that was longer than i intended!! hehe

Tom,

I full agree with everything that you said. Seeing that I have not yet had a stroke, I've been bouncing between doctors to get a "full" diagnosis. So far, three different doctors have said lets hold off and see what happens. So, of to new doctors....

Regards,
Greg

Tom

I am one of those blessed to be diagnosed quickly, and before any stroke.

Greg - despite this, after being diagnosed on 28 Sept. 2005, I have already had right and left STA-MCA ops.
Am looking forward to resuming a healthy life with my 12 yo son.

Helene

hey wow helene! so all went well? good on you!