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Friday, March 29, 2013

moyamoya brain surgery ???

as some of you know, my battle with moyamoya disease has been a long and arduous journey of at least 20 years. in 1992 i originally started at a gym with step aerobics classes,however after a couple of months (?) my blood pressure started to rise near the end of the class, i had also started having memory problems. it was suggested by my doctor,at the time, to try working with light weights for toning rather than the aerobic workout. things were fine for a few months. however, one morning i started my workout on the pec deck with 3 sets of 15 repetitions, with very minimal weight as i had found using the pec deck my biggest challenge somehow. now, i had a history of migraine headaches which had started at age 19,i believe without this history of severe head pain i would have fallen to my knees at that point of standing from the pec deck... for as i stood, it literally felt as though someone had hit me in the head with a sledge hammer with the force usually reserved for the strong man ringing of the bell at a carnival.
i could not speak,i could barely think or function as the pain was so overwhelming. i managed to walk along the wall to the other end of the hallway,maybe 25 feet,as no one else was there and i felt safe to sit,my body slid down the wall and i sat... holding my head, tears started to flow but still i could not speak. i have no idea now how long i sat there, if i had my son,age 2 or possibly had just turned 3 at the time, at the gym with me. whether i drove home and called the DR or if i drove to the doctors office or whether my husband,at the time, picked us or me up at the gym and drove me to the DR. i do remember the DR thinking it was a migraine and my insisting it was not. he insisted that as my migraines had changed several times over the years that this was simply once again a change in the routine of my migraines. though i was still in pain,less pain than the onset but yet pain equal to a strong migraine without the typical side affects of my migraines and i believe taking my usual migraine medication, i could think of no better way to find the truth than to go back to the pec deck at the gym the next morning.
so i did just that, i returned to the pec deck the following morning. as i attempted what was to be the first of 15 repetitions, almost immediately the pain started to intensify in exactly the same place as the day before. i drove straight to the DRs office, he saw me almost immediately... i explained what i had done and what followed... he then agreed with me that this was possibly something other than a migraine and sent me straight to the emergency room with his written instructions for an MRA of the brain,an mra is an mri with the injection of a dye for the purpose of following the path of the dye. he instructed me as i left to insist they follow his instruction in using the dye as it was medically necessary. however, the radiologist felt it was NOT necessary and did a regular MRI instead... the test was inconclusive, i then had to return the next day for the MRA with the instructed use of the dye.
the MRA revealed a small brain bleed had occurred from a small blood vessel in the outer layer of my brain, i believe it was near the brain stem. i was told it also revealed there was no tearing of the blood vessel involved but that it had caused a seepage of blood, the same type of seepage that causes you to form a bruise under the skin, but that my pain was severe because the blood had seeped into my brain fluid surrounding my brain which is meant to protect the brain and also allow it to move freely as we move about... the seepage of blood into my brain fluid was keeping my brain from moving freely and that it could not be removed by surgery and so i would have to give it time to clear out on it's own, which could take some time but but they could not predict how long. i was restricted  for the duration of the necessary time from lifting more than 5 pounds, from bending forward and anything else that would cause increases pressure or unnecessary movement of head and brain.
it took approximately 7 months of not lifting my son,sitting on the floor to carefully play with him or even sort laundry,sneezing was a horrific and God forbid, throwing up was 5 times worse,i believe there were out patient hospital visits for test after test,MRA and MRI after MRA and MRI, blood test after blood test... all in search of strokes and brain tumors, testing for heavy metal poisoning, hormone levels, brain tumors,lupus and anything else they could think of. during this time my marriage had deeply deteriorated and i had been informed in november of 1993 that my brother Mark was living with full blown AIDS ( Mark had found out he had HIV after having his spleen removed while i was pregnant. he did not tell us about the HIV as he did not want to take attention away from my pregnancy...  i had a difficult time getting pregnant and difficulties during my pregnancy and he feared the stress may have caused me to loose my baby).
while my ex-husband and i where dating and during our engagement my father had, i believe his third heart attack followed by open heart surgery,which quite by accident lead to the discovery that my mother had breast cancer and a partial mastectomy. i lost my mother to liver cancer july 29,1987 just 5 and a half months after getting married i believe it was within 4 months of her death, that his father had an aneurysm of the aorta with successful surgical repair. i'm unable to remember for certain,though i believe it may have been during the winter holidays of 1989 or 1990 his father suffered a severe stroke which left him in a nursing home unable to communicate, and at some point my father started having mild strokes. my ex-husbands father passed away on our sons 1st birthday in 1991. then just as it seemed i was finally recovering from my brain bleed,we are informed of my brother having AIDS... 1 long term illness or one death in a family puts a strain on a marriage,we were enduring multiple overlapping illnesses and deaths, along with,at that time a
private issue,affecting our  marriage.

then,i believe january 1994 almost a year after the brain bleed... i awoke in the middle 
of the night... i felt very odd, not like myself,i had numbness of my right leg,arm and side of my 
face... back to the hospital, more tests, more DRs, all standing around my bed with their 
clipboards... all asking me questions,asking each other questions as they all flipped back and 
forth through my records tossing ideas and opinions back and forth like a game random ping pong
 being played by 8 or so DRs over my bed. ...i was asked once more to describe the events of that night before, 
suddenly i heard 2 words jump out for the first time... LYME DISEASE !! they all scurried through 
their reports, checking to see if there had been any mention of it or any test for it,it was no where
to be found. the blood test was ordered and found to be positive. FINALLY, they had found an 
answer which made sense to them all.
i was immediately started on a 3 week course of oral antibiotics. still positive,another 3 week 
course of oral antibiotics,still tested positive,followed by what turned out to be the 3rd and 
final 3 week course of treatment for LYME DISEASE !! 
i will not share with you my ex-husbands response to my diagnosis of lyme disease. i will 
tell you that it was during my treatment that i first brought up the subject of separation. 
after my diagnoses and treatment of lyme disease i was informed that it was possibly the cause 
of my brain bleed, though they could not be sure as we did not know when i had been infected.
i was told that after having had lyme disease i was not allowed to donate blood or organs, that
they believed the brain bleed was a 1 time vascular event,however i should not have another
child because they felt a pregnancy could 'possibly' cause it to happen again and that i 
would likely miscarry or if i did carry to full term it could 'possibly' put both the baby and i at
risk of death during delivery. it was necessary to have a lyme test i believe every 3 months at
first,then every 6,then every year.( i have not tested positive for lyme disease following the 3
three week treatments in early 1994). i was also to have an MRI done periodically to keep an
eye on my blood vessels in my brain, i was told i would have hypertension the rest of my life and 
also diagnosed with fibromyalgia + most likely would be in a wheelchair within ten years. 

for the next 14 years i was in and out of emergency rooms,DRs offices and neurology 
departments,had numerous MRIs,my blood pressure became uncontrollable in 2001 
periodically spiking higher and higher including several years when it would suddenly spike up
as high as 230 systolic, each time unable to get ANY medical records from the
1990s including MRIs,MRAs or any written reports from that time and each time getting no 
answers for my tremors,uncontrolled muscle movements etc.
in 2005 i was finally told by one neurologist i had previously suffered a stroke in my left pons,
still all was blamed on everything from~ getting myself all worked up,to menopause, to caffeine
(even when i was drinking non) and of course always testing me for street drugs and being
shocked to find none, to repeated testing for lupus,heavy metal poisoning,to addison's,
parkinson's,MS etc.

so,3 years ago,2010 i finally received a copy of a report from 1996 comparing an MRI done then to an MR done in 1994-the year i was diagnosed+treated for lyme disease+told my brain bleed was a 1 time vascular
event- *yes i have mentioned this part here on my blog and other online sites over the last couple of years*-
the report ...( *perfectly describes moyamoya disease,but i was never told any of the findings from that report because they once again diagnosed it ALL  as a 1 time vascular event* ) ...was found about 2 weeks before my appointment to schedule brain surgery for MOYAMOYA disease (which had finally been properly diagnosed in 2008) and it was that report along with scans done
between that diagnosis and the appointment to schedule my surgery that brought us to the understanding
that surgery was out of the question and the agreement it would only be done as as last chance effort to
save my life, if there was still a possibility of quality of life.
       ...well, due to symptoms i'd been having i was brought in for new CT angio scans of my brain in august
or sept. not sure,the preliminary answers i received that day were that still 20 years after that brain bleed, for
which we still had no records for-to see if any of the signs were there at that time- there is still no sign of moyamoya on the left side of my brain... which was his main concern at the time.
   yesterday i went for my yearly exam and the follow up appointment to those new scans...
*today i called my nurse practitioner who was w/me yesterday,to be sure we both heard the same thing*
he had asked if i have had any TIAs (*** ***)
since those scans i said yes 2 but i don't remember exactly when. then showed us parts of the scan and
zoomed in on the tiny tangled moyamoya blood vessels and vessels with blockages they have grown from
the new scans show improved blood flow in the area near the moyamoya blood vessels...
so from what i understand:
     probably due to the medications he has had me on since my diagnosis in dec 2008, the TIA's i have experienced in 2012 and now in 2013 were caused by clots that have broken away from the blockages of the blood vessels from which the moyamoya vessels have grown... we are to contact him if i have any more what he called HARD TIAs that affect my left side such as use of my left arm or left leg as in loss of movement,severe numbness for a period of i think 15 to 20 minutes and then goes away or other signs of stroke are that go away such as loss of speech, vision changes beyond my normal migraine or moyamoya vision.
     depending on the symptoms if i have more TIAs he will decide if new scans are warranted and then if the brain bypass surgery can be done... as it should have been years ago,instead of a risky last ditch effort to save me during a stroke. of course the normal risks of this type of surgery would still be there.
               ***there may possibly be a chance for me yet***
and i will know exactly who to thank if i get this chance and in which order... ;)

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