Hi Everyone!
My name is Lisa and I am a 42 year old. I do
not suffer from high blood pressure, nor do I have high cholesterol. In fact,
my doctors say that my HDL and LDL are SO good that they have never seen
anything that good before. So, I have no reason to have any of the problems
that I do. Here is my story and I know that I am long winded, but I hope the
group will forgive me. I promise to ATTEMPT to be humorous (hopefully I will
not offend anyone as I have a rather "offbeat" sense of humor.
In August of 2000, I was walking down the hall of my home in
route to my parents room (they both live with myself and my husband). I had a
glass of ice water in my hand. I get into their room, open my mouth to speak to
them, and the next thing that I know is that I am on all fours trying to pick
up the ice cubes. My mother said I turned totally white and hit the floor. My
mother came over to me as I was picking up the ice cubes and she literally (she
is 79) picked me up/dragged me to my room and put me on my bed. I was dressed
in shorts and a shirt and at this point they were completely soaked through
with sweat.
My mother assumed that I was having a heart attack. She called 911.
I managed to get downstairs before the EMT arrived. I had to go the bathroom
twice because my bowels "cut loose." The EMT arrived and they took my
BP and it was 80/50. They did their thing and off I go to the hospital.
At the hospital, the doctors said that I had only had a
"vagal vagus" episode - even though I told them that I have NEVER fainted
in my life. I did not have a headache but kept feeling like I was going to pass
out. They gave me lots of IV's to "pump" up the volume of my blood
and kept checking my BP and EKG read-out. My BP went up to 90/60 and they
stated that I had "stabilized" and discharged me 4 hours later. So, I
get home (my husband was out of town on business) and my parents were, of
course, worried about me.
Next morning I felt rather odd - I can't put it into words -
just not myself. I called my Family Practice physician and explained to her
what had happened and she said to just "come in now." She does her
work-up and at this point my left eye is droopy and watering, and when she
tells me to thrust my tongue to the left side of my cheek and hold it while she
applied pressure to the outside of the cheek. I could not keep my tongue there
with the pressure that she applied. She said that she wants and immediate
MRI/MRA done. So, off I go to get this. They were unable to get me in until
later that evening.
The next morning came and my doctor called me and told me
that she had some news for me and for me not to get "upset." She is
my physician and also my friend and she knew me well enough to "not sugar
coat" her information.
I had a stroke in my brainstem and in my cerebellum.
My Middle Cerebral Artery was totally occluded. She had already contacted the
finest neurosurgeon in our area and made an appointment with him that very
morning. My husband arrived home and off we went to the Neurosurgeon. (Nothing
says lovin' like coming home from a business trip and greeting your spouse
with, "Hi, honey. I've got a little problem......."
The Neurosurgeon
examined me and looked at the MRI/MRA's and said that I needed to be admitted.
However, there was no room at the hospital just then and I would need to wait
until a bed became available. My neuro wanted me on the Neurology floor and the
only beds were in other areas of the hospital. So, there I am with a totally
upset husband and being told there are no rooms available at this moment. I
found the whole thing rather humorous at this point. I asked the doctor if I
was in danger of "dropping dead at the moment" and he said no but
that my situation was unstable. I was like, look, I'm starving and if I am not
going to die immediately I wanted to get something to eat. So, off we go to
eat.
My husband was totally freaked out by now and he just kept
asking, "How do you feel?" I was consoling him and quite frankly I
was not "all weirded out" at all. Anyway,
FINALLY we get a bed and by
this time it is like 7PM at NIGHT. The nurses on the neurology floor were
totally AWESOME.
Finally, I am able to convince my husband to GO HOME and chill
out. About the time he leaves, his boss and her wife burst into my room and the
first words out of their mouth is "We thought you had a stroke??!!"
That was the funniest part of the whole day - what did they expect - to get to
have the first look at a vegetable?? People can be really DUMB.
The next day after much labwork, meeting with Cardiology,
Rheumatology, Neurology and Neurosurgery - a plan of action is in place. I am
to have a angiogram of my brain -
Husband is still highly concerned, especially
after I had to explain to him what will happen during the procedure. Off I go
for the angiogram and I meet the Radiologist who is just wonderful. I told them
that I will DEFINITELY need more meds to "consciously sedate" me that
they usually give because I am resistive to medication. He ASSURES me that the
dosage they give will be just fine. I won't lie - I was scared at this point as
they placed me on that table. They let me keep my glasses on so that I could
watch the monitor - that helped SO much. I hear them talking, but I feel no
pain, however they did have to increase the dosage as they went along. I am
doing great - watching the monitor - and talking with the radiology staff.
All
of a sudden I feel like someone shot me in the back of the head with a shotgun
- I could hear myself scream (like it was far away and not me). The
"head" radiologist yells, "Heparin 5000 units - and then yells
again "Heparin 5000 units more" - "Get Procardia in her
mouth." I swear to you, I was calm as can be - mainly because my husband
told me before this test that if ANYTHING goes wrong I promise you that you
will not be alone and you will not be afraid. How right he was. I was not
alone. I remember telling the radiology team, "Yeah, yeah, you guys said
this was a walk in the park"- and I laughed.
The radiologist got a bit
terse with me and told me to be quiet - I actually heard fear in his voice.
What I didn't know was that I suffered 2 strokes during this test but they were
able to dissolve them with the HIGH doses of heparin. The vessels in my brain
actually clamped shut when the dye was injected and did not resolve until 30
minutes later. All the while, the Neurologist was in close contact with the
radiology team.
I was taken to recovery and this member of the radiology
team, bless his heart, had to apply pressure to my groin where the catheter was
inserted for over 4 hours - I am not joking. He happened to be black and I just
had to joke with him and say "Hey, never had a black guy holding my groin
before!" He had the same sense of humor as I do and for four hours all we
did was laugh.
The head radiologist came in and said that he had never seen
anything like it and that he was so glad that he didn't have his usual second
cup of coffee that morning. Finally, I get back to my room and they are trying
to get the sandbag on my incision. However, when they moved me from the
recovery room gurney to my bed I began to bleed once again. So, here comes my
buddy from radiology to hold the groin area once more. My husband was waiting
for me when I got back to my room and he is definitely not one for blood and
gore - but he stuck it out with me during the next 2 hours - Finally I stopped
bleeding. I was every color of the rainbow the next day from the groin to the
knee.
The next day comes and I get another fun test - Nothing like
a camera shoved down your mouth. Got sedated again - got to wear my glasses -
got to watch a tube go down my throat and check out the condition of my heart.
I remember seeing the screen and seeing my heart pumping but I don't remember
any pain. The cardiologist is a good man. More lab work, etc.
During the night I get this unbelievable pain in the left
neck and they do a stat MRI on my vertebrals. I am told that I cannot swallow
while this test is being done. So I am quickly thinking of how in the hell am I
going to be in the MRI tube for God knows how long and not swallow. I told them
to take a towel to one side of my face so that if I drool I will not slime
myself or the tube. Mission accomplished!
They said they had never seen a
vertebral MRI that clearly before. Unfortunately, now on top of the 2 strokes
(brainstem & cerebellum) and 2 strokes during the angiogram I am now the
proud owner of a vertebral and carotid dissection. I am planning my escape at
this point - like dude, am I getting out of here in one piece???
Also, was
informed that they found renal vasculitis (angiogram does the brain, kidney,
etc.) and a small aneurysm on one of the poles of the kidney. Vasculitis -
hubby asked me about that one - I lied and said "It' s nothing." He
didn't believe me and went home and hit the internet (damn that internet!) and
came to the hospital the next day and was rather peeved at me for lying. Oh,
well, like he needed more crap to worry about. (Docs are watching me for any
sign of recurrent vasculitis at this time - vasculitis of the brain has not
been ruled out)
I got to spend 2 weeks in the hospital - got poked and
prodded - had so many shots in the behind for pain (from the
strokes/dissections, etc.) along with my colorful leg I had two colorful
cheeks! HA! They had tested me for EVERY possible disease, hypercoagulation
disorder, etc. The conclusion was that they had never seen ANYTHING like what I
have.
Now for the current situation - after coming home I suffered
panic attacks (felt like my heart was going to explode). It is a residual
effect from the strokes. This took approximately 4 months to resolve. I was
prescribed Ativan. Yes, I wet the bed several times - Hey let's go buy some of
those adult diapers and run into people we know at the checkout counter! I got
lost in town - had to call my husband on the cell phone, "Honey, it's me.
If I give you landmarks can you get me home?" Got lost in the house a few
times (now that was funny). Had a heck of time remembering my computer
programs, etc. I would sit down at the terminal and my mind was go off in never
never land.
My concentration and understanding were awful - They have only
RECENTLY come close to normal. However, sometimes, when I am working with
technical or financial information I have stared at it for hours and not even
realized that I had not accomplished a darn thing.
My blood was very unresponsive to Coumadin - it must be some
thick blood! They have had to really work hard in regulating my dosage - I take
13 mg Coumadin each night and the BEST my INR has EVER been is 2.3. Most of the
time it hovers around 1.9. My neurologist says that NO WAY is he going to
increase that stuff any more - He told me that anyone else on that high of a
dose would have bled out! (Hey, at least all of them have a twisted sense of
humor - I can live with that!)
Headaches ( Feeling like my ENTIRE head is in a vice, sore
areas on the head - locations changed daily, fullness, tightness - Basically my
entire head hurt in a way that was overwhelming) began in January (4 months
after stroke). Nubain injections helped tremendously - but I was needing them
every month or even twice a month. My family doc has referred me to a Pain
Specialist/Anesthesiologist was has put me on Neurontin and Imiprimine. SEEMS
to be helping - I am very cautious in saying that it has solved the problem
because I know that when younger people have strokes, the brain chemistry is
altered. The meds I take for headache may work now but will they work later? -
due to the changing chemistry of the brain.
Went to Emory University for a second opinion in March of
2001. Neurologist there stated that he has seen cases exactly like mine - but
that there is no explanation as to the cause. Mostly this type of middle
cerebral artery occlusion occurs with drug users and diabetics. Since I don't
fit into that category I fit into the category of UNKNOWN CAUSE. He also
explained to me that when the brain "reroutes" itself - chronic
headaches are very common. He said that I should be glad that I get them
because my brain is making collaterals to compensate for the occlusion. He also
stated that I have a block in the internal carotid where it makes its first
petrous turn.
So, what is my prognosis?? It is fair. I am lucky to be
alive because having a stroke in the brainstem is usually the kiss of death.
This is a condition that I will have for my entire life. How long will I live?
Who knows? However, my doctors are wonderful and exceptionally motivated to
help me in any way. My Family Practice doctor (my friend) has put a lot of her
"own" time into gathering any new information as have I. When I need
to see them - they know that I don't cry wolf - they work me in - with no
problem.
The Pain Specialist is considering putting botulism
injections in my head in the future if the headaches remain. Also, he has put
pain blocker shots in my head (in the temples, shoulder area, back of head) and
I have gotten relief. So, I have headaches - so what? - that is the ONLY
chronic problem the strokes and all left me. Some days are hell - some days are
heaven. I go with the flow. When I am totally overwhelmed I just hug on my
mother or my husband and they just let me BE - They can't take it from me -
They just hold me and that is more than enough.
I don't know if this information has helped anyone or not. I
hope so. I hope that you do see the comedy in this little narrative and get a
chuckle here and there.
Hey, life is certainly a comedy of errors! If I
offended anyone by anything that I said - believe me - I didn't mean to.
Respectfully,
Lisa
