TALK TO A
Established April 15, 1995
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My name is Debbie Hill. I am 33 years old, married, and I have a daughter who just turned 8. I have suffered from frequent numbness in my arms and hands for the past several years, which I chose to ignore until March 21st of this year. I was diagnosed as having a brain AVM located in the speech/motor area on 4/6/00. This is how my story begins.
11 April 2000
Sometime ago I began experiencing numbness in my arms mainly during working hours so I wrote it off to stress, carpal tunnel, you name it, I ignored it. Around Christmas time of last year I began noticing that often I had a headache just before the numbness started, but still I ignored what were warning signs that something was wrong. March 21, 2000, I was sitting at my desk at work and felt a headache coming on so I took Advil as usual and went to resume answering e-mails when my fingers and arms went numb and I still continued to work right on as I usually had, until suddenly I had no control over my arms or hands. So I sat at my desk with my head in my hands for a few minutes thinking this would go away in a few minutes.
Well after about 10 minutes or so my phone rang and I answered it and found myself unable to hold a conversation with the party on the other end so I told her I would call her back. I went to write myself a note and could not hold a pen to write. I was starting to get very upset when the phone rang again from an outside line and it happened to be my mother. She knew immediately something was wrong. I began crying, mainly from the frustration I was feeling at that moment and my teammates realized that something was wrong as I began to try an explain to my mother what was happening.
I rested for a while and went right back to work as soon as I had gained my composure back. My mother, teammates and husband urged me to make a doctors appointment ASAP and not to overlook this any more. My husband even called me every 30 minutes to see if I had made the appointment yet, until he was satisfied I had an appointment. My doctor recommended that I have another CT scan, I had one 3 years earlier - because I passed out in the bathtub for no apparent reason - but it was clean.
Before the doctor could meet me on Monday to tell me the results I had already received a card in the mail confirming an appointment with a neurosurgeon, you can just imagine the shock, and to make matters worse it arrived during my daughters 8th birthday party. On Monday 3/26, the doctor told my husband and myself that I had a brain tumor based on the CT and that the approximately size was 3cm X 4 cm (about the size of an egg). Following an MRI and Angiogram, We were told this past week that it was in fact not a brain tumor, but that I had AVM. They are saying that the numbness is actually seizures and have now put me on medication to control them. I can't even begin to explain how hard the last three weeks have been on our family. We are waiting now to hear back from the doctors to find out how they are going to proceed with treating my AVM.
I am thankful each day for the Love of those who encouraged me to seek medical care. My body was trying to give me warning signs that I was ignoring. I was lucky, the AVM has not hemorrhaged yet. Even though they say it is not located in a area where they can remove it, at least they will be able to perhaps prevent me from suffering a hemorrhage that could have ended my life the way I know it today.
Update 7 Dec 2000
I thought I'd send you an update on my status. Since my AVM could not be removed they opted to do the Gamma Knife procedure. In July I had the procedure and the day following the procedure I had complications. I felt my hands go numb and began to feel a little disoriented. After about 30 minutes I decided to call into the doctors office and discovered when I went to talk that I couldn't say what I was thinking. It just all came out as gibberish. The nurse I was trying to talk to told me to come back to the hospital immediately. I stayed overnight and I was seeming to improve. The next morning I couldn't speak without stuttering so they readmitted me again for another night. They say that this was caused by a complication from the angiogram that I had as part of the procedure. My stuttering lasted for 2 1/2 months. During this time they kept telling me it was just temporary and recommended speech therapy. I never went to speech therapy because I wouldn't give up on the fact that it was going to go away. I worked daily reading aloud and practicing talking without the stutter until it resolved itself. I cannot possibly explain how hard this is physically and emotionally. When the doctors tell you there is a possibility of complications, it just never seems to hit home until it is you.
During the angiogram they discovered that my AVM is much larger than they initially thought and had 2 feeder veins instead of one. They told me that I will need 2 additional treatments 6 months apart. My next visit is in January to schedule the next Gamma knife procedure. You can't begin to imagine the fear I have right now.
I feel I finally have gotten things somewhat back to normal and things could turn right back upside down. My daughter has now readjusted to me talking normal again. I think it was harder on her than anyone. It was extremely hard dealing with a new school and new teachers. We even made special arrangements to meet them outside of open house so she wouldn't be embarrassed by the big bald spot on my head or my speech difficulties.
I read the other narratives and respond when I can. They have given me much hope and faith over the past few months. I would like to know from others if they have experienced anything like this and if they did have additional treatments if the symptoms reoccurred.
© Copyright 2000 Debbie Hill
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