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| Brenda |
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My story began in Jan. 2000 when I began having severe headaches, stiff neck, weakness, and an inability to follow directions, and trouble
with word retrieval. I was afraid that I had a stroke, so I put off going to the doctor, until my husband and children pretty much forced
me. I was scared of what I would find out. You see, I am a registered nurse and I knew deep down there was a problem, but I didn't want
to face it.
When I went to the doctor, I was diagnosed with depression, anxiety (due to a new job) and migraines. The doctor did however schedule
an MRI to see if there was any thing medically wrong with me. I went to the hospital on Feb. 7, 2000 I didn't know it, but my husband
had a good view of the monitor. When I was done, the technician had me sit down until he checked a few things. My husband looked funny,
but I thought he was just concerned. When the technician came back, he said that there was something on the MRI, an abnormality he called
it, and that he had spoken with my doctor and it was agreed that I needed to be admitted immediately.
I completely went numb and started shaking. I was immediately in a private room, taking 300mg of Dilantin in case of seizure. We waited
for the doctor, who when she arrived asked if I wanted her to examine me real quick or talk about what they found. I agreed to the exam.
Then she sat and said that they had seen what was believed to be a tumor. I needed to go immediately to Pittsburgh to have a brain biopsy.
Of course that would be after all my blood work. I asked my neurosurgeon if this was something that could be survived. He said we would
have to wait and see.
Being a nurse, I knew a lot of the nurses on the unit, and they started filing in and out with questions and looks of sorrow. My husband
still had to tell our children ages 14 and 12 at school, not to mention family. That was the most painful part of my life, having to see
him suffer and my children suffer, I felt so guilty for having put them in this horrible situation. Family, friends, and nurses started
coming in and out of my room for hours. I left for Pittsburgh the next day via ambulance to have my biopsy.
I think I was still in shock, I was still working on keeping my family together and comforting them, as well as everyone who came and
went, reassuring them that I was fine and all would be well. Well, the biopsy showed nothing, essentially, except inflammation so severe
that it was putting pressure on my right ventricle, the mass was on the left frontal area.
That was in February and with nothing conclusive, I went to Pittsburgh, and another biopsy was performed on August 2000. Again nothing
out of the ordinary showed up, other than inflammation. During this time, I was on Decadron, (steroid), Dilantin, and pain med's for the
headaches. However by this time I was becoming worse, my balance got very bad, my speech was terrible, the headaches remain, and I began
severe side effects from the steroids.
I was sent to a cancer specialist and also saw immunologists; some were the top in the country, more than 20 doctors in all, specialists
included. I was put on the chemo. Drug Cytoxin for over 3 months, Prednisone, Ativan and Zanax. At one point I was on 23 pills a day.
Then I was referred to Cleveland Clinic, where they scheduled yet another biopsy. By this time, I was completely disabled, no short-term
memory, barely walking, etc. This was August of 2001. Again no abnormal results from the biopsy. They left a hole where they removed it.
Oh, I forgot, my first neurologist, said not to worry, because he felt whatever it was would just DRY UP and go away! When nothing abnormal
showed on the third biopsy, Cleveland said they couldn't help us anymore, and if we needed anything we could always call them.
As of today, June 2002, I have lost everything that I used to be. I am no longer a nurse, I can't remember the date, let alone feeling
comfortable about putting someone's life in my hands. I have extreme left sided weakness, I use a cane and wheelchair, and I still cannot
walk without falling over. I have tremors, muscle weakness, decreased concentration, personality changes, and chronic fatigue, you name
it.
I also started having grand-mal seizures. They last up to 30 min. and I have been instructed to go the hospital immediately because I
stop breathing during these seizures. I had to surrender my driver's license. I am 38 yrs.old with no medical history, or family history
of this type of problem. As of today, my new neurologist thinks it may still be a slow growing neoplastic tumor, or possibly Rasmussen's
Encephalitis. I do still have some inflammation, and the mass is still somewhat visible. Currently I am on Dilantin 700mg per day, Keppra
1000mg per day, and Depakote 500mg per day. In one month I will go off the Keppra then possibly wean off of the Dilantin. By the way,
did I mention my last neurologist suggested I see a Psychiatrist to deal with my problems that "I think are physical"?
If I seem bitter, maybe I am somewhat. I am not crazy, I am somewhat intelligent, and I do know something about my own body. When I read
the letters from other people my resolve is a lot stronger. More now than ever. Please know, I WILL MAKE IT!!!
An update to all of you, there have been a few doctors since my letter. The very last one, said the brain damage was too severe to expect
more than what I am doing now. I still have seizures, not often, but still on 1500mg of seizure medicine a day.He( the doctor) told me
the problems with my speech, and understanding the words I hear, and comprehending what I read, will not come back. I still have to get
MRI's every 6 months. He also told me that I will never drive again, and that the type of encephalitis I had (they have not determined
) may return. I am dealing with things ok now. Like so many of you, I will never be able to handle stressful situations the way I used
to, let alone ever be a nurse again. My daughter just graduated from High School this year (2003). I am so grateful that I was here to
see it. I wasn't sure if that was going to be the case 3 years ago. Please, I would really love to hear from any of you. I am back with
my email and I really could talk to someone that knows what I have been, and will continue to go through the rest of my life. Thank you
for listening, and caring.
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Brenda
PA, U.S.A.
Posted: June 13, 2002 |
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