The beginning is the best place to start, but mine is a bit retrospective, as I wasn't aware of certain things that were happening to me, until well after the fact.
Here goes, in April of 1978 at the age of 22, I gave birth to a 9 pound, 7 ounce baby boy. During the labor, which lasted 36 hours, I passed out for 9 hours. My signs were all normal and my mother was there to inform them that I had a very low pain tolerance and probably fainted from the pain; so nobody got too worried. I personally think this was my first bleed.
Next jump to September. I had just started going to U-Mass as a pre-med major in mathematics. I got occasional headaches from April to September, but they doubled between September and January. I was eating a bottle of Tylenol a week and put off the headaches as probably brought on by motherhood, work, and school.
In February, I saw the school doctor, who after testing me, said everything looked good but I had some blood in my urine. Returned in a week, new test, no blood, still had terrible headaches. Returned in 1 month, new tests, blood in urine again. He sent me to an endocrinologist. More tests, final result, cyclical bleeding - unknown origin. He didn't know what else to test for, and neither did I.
Now it's September 1979, I went to an ENT doctor, who after initial exam, said I had blue tissue in nose, indicative of an allergy, prescribed Fiorinal with codeine, and I was at last getting 4 or 5 hours of sleep, but still had headaches. My family was now getting concerned and my aunt suggested her doctor, "One of the best at Mass General". So I made an appointment, saw his resident for a very thorough 2 hour examination, met with him and he said I should see a psychiatrist, that it was probably "all in my head". Well, he really had me worried - was I imagining this, after all, causing this myself? So off I go to the psychiatrist, who after our initial discussion, tells me to keep searching for an answer, that I am one of the most stable people she's met.
It is now August of 1980, I have a little balance problem, but no earache, go see another ENT, who says I have an ear infection. He treats me and sends me on my way. The dizziness does not stop, the ER gives me shots of Demerol when the headaches are real bad, and send me home and the pain in my head gets worse, plus my right eye is now getting bloodshot for weeks on end.
I'm in the bathroom, shaving my legs, when a pain comes up the back of my neck and explodes in my head. I sit for a while, crying, then go in the kitchen for coffee and a cigarette. Neck feels stiff, but no more pain, so I get in my car to drive to my parents house. Before I get to the end of my street, peripheral vision is suddenly gone and wavy lines in front of me. I pulled the car over, walked back to my house, called a cab and went to hospital, next town over.
Remember the first ENT, she's covering the ER and says this has gone on too long, (2 years), and admits me, but before I go up to my room a neurologist comes to examime me, doesn't think anything is wrong with me other than I'm a premed major who is probably experiencing everything I read. Thank God, the ENT comes into the exam room, tells him I am her patient and to please leave.
After I am admitted, they give me a shot of codeine with talwin, every 4 hours (I still had numb spots in my rear end a year later) and set up an appointment for a CT scan, which wasn't for 4 weeks, (not a lot of CT scan machines in 1980). I go have the scan and they send me to the Mass General, seems they found a mass a few centimeters wide, midline cerebellum. I just get put in my room, when I start throwing up.
Dr. Roberto Heros, a cardiovascular surgeon and my knight in shining armor, puts me on Inderal, slowing down the heartbeat to 40 per minute. Not only do I stop throwing up, but the pain in my head lets up a little. I spent the summer of 1981 in the Mass General getting arteriograms, and learning about AVMs (They are congenital, 5% of the population has them, and only 5% of those act up. In fact, until recently, they were mainly observed during autopsies.)
I had my 1st surgery in October. The brain filled up with fluid, I lost my eyesight for 3 weeks, and the AVM was still in my head. He told me the AVM would continue to grow and I had a 3% chance per year of rupture. I figured I was 26 and Had maybe 33 years tops, and that wasn't so bad, was it?
Every July, like clockwork, I returned for an arteriogram, to monitor the rate of growth until 1985, when I rebelled. I was so sick of people feeling sorry for me, that I told them a story he had told me about another patient, "the AVM exploded with minimal damage. In fact, the doctor wouldn't have seen it if he didn't know where to look." I was still getting my headaches, but after telling that story for years, I guess I just wanted it to be true, so I believed it.
In September of 1990, my GYN doctor wanted to perform a hysterectomy, but while glancing through my records, spotted a paper on a residual AVM. She spoke to a neuro-vascular doctor, who agreed to see me and check things out. In November of 1990, while having an arteriogram, the radiologist clipped a piece of my vein and shot more dye at the same time, resulting in another stroke, which kept me in the hospital for a few days. Plus they found the AVM, bigger and worse than before. I was told they had discovered a new technique for surgery and they felt fairly confident they would get it, so the question, "Let them operate or wait for it to blow?"
I had my second surgery in February of 1991, in fact I missed Valentine's Day that year because I was still out of it in the ICU. Can I mention in this already too long narrative, that I was married on February 7th, 6 days before the surgery? I guess I did tell you! Anyway, I went back to the room after 3 days in ICU, had a terrible wheeze for 3 days that I'll never forget, "white noise" for a few days and stayed for a total of 7 days. They removed my stitches and sent me home.
I kept sweating from my head, but the nurse told me it was probably from the stocking cap they gave me, so I said okay and went home. I got undressed and got into bed, turned the TV on, had a cigarette, then got up for a glass of Pepsi....The bed was soaked! My nightgown was soaked, and by now, being from the school of Murphy's Law, called my doctor immediately. His secretary listened, then told me to lie down and remain calm, she would call me back in a few minutes. She sent over an ambulance and called my husband of 16 days, and told him to get home and let them in....my stitches had opened up and I needed to come back in. They stitched me up in the ER, put me in quarantine for 5 days, let me back in the room for 5 days, removed my stitches, and told me to go home and come back in a MONTH.
So home I go, stayed on rest for a month, saw him, was told the AVM was a thing of the past (my husband was there this time, so I know I didn't imagine it) and I could go back to work. Which I did.
About a year later, I started to get headaches again, but I figured they had to be stress ones, right? My doctor ordered an MRI for me and compared it to the old one, the AVM was still there! This time the hospital was New England Medical, and the surgeon was a pedi-neurosurgeon, a friend of my ENT doctor. He suggested an embolization first, to make the procedure less bloody. I signed the papers, but had a problem with my speech and movement afterwards, so I stayed home until the surgery the end of May.
After the surgery, I was assured the AVM was now completely gone. I woke up with "white noise", which I still have, my speech was messed up, I had right side ataxia, and I bounced off walls when walking because my equilibrium was affected. BUT, the AVM was gone.
I was supposed to go back in 10 days for a check-up, but my head felt funny and my thinking was getting slow, so I went back after a week instead. I was immediately admitted, the fluid was not passing through and being drained, it was building up in my head and causing pressure. I really didn't want to go through another surgery so they could put in a p-v shunt, so I made them wait a day until I decided ok.
I got out of the hospital in mid-June 1993, I take Flexoril for the stiff neck I have from one of the surgeries, Oxycontin for the pain in my head from nerves being cut during surgery, walk with a quad cane so I don't bump into buildings or people anymore, have put on 100 pounds since 1990 and will have to have the shunt replaced some day. I'm permanently disabled but I'm 43, have a 21 year old son, and 45 year old husband of 8 years. Sorry I took so long, but it was a long time happening.
Update 1 Feb 2000
Just to give you a quick brush-up on my condition, my last surgery (the 4th) was in June of 1993. They put in a p-v shunt because I had developed hydrocephalus after the last surgery on the AVM in May of 1993. I was left with a quad cane to help with my loss of equilibrium, some right side ataxia, and enough memory loss to ensure I'll never work again. The powers that be say I'm unemployable. I hope to prove them wrong eventually, I'm only 44 and I don't want to spend the next 55 years on my couch.
I seem to have developed other problems in the last year. In December of 1998, I had an arthoscopy done on the left knee. There's no cartilage, and I was told that I had done this to myself with all my walking. Now I am not supposed to walk any distance, so you can imagine how much I've blown up weight-wise. This January, I picked up a back brace for what has been diagnosed as Facet Joint Syndrome. I can't walk or stand for longer than 10 minutes and the brace doesn't really help my lower back. I have ballooned up to 333 lbs. (I'm only 5'10"), this alone may be causing the strain on my back, knee and yes, my left hip is hurting now.
The good news is that my doctor recommended me for a gastro-intestinal bypass. I speak to a person on February 23rd, pertaining to the psychological aspects of the surgery. I feel that this is the only way for me to get down to 150 again. I guess I'm just pissed off about the pains I get. I'm on 50 mg of Oxycontin for the head pains, they figure I might have some nerve damage from the previous operations. I also take Paxil, (wonder why I need an antidepressant, I still have my sarcasm to fall back on, huh?), Flexoril, Oxy IRR and Motrin, but this medication doesn't seem to stop my back from hurting so much. I ice my knee and hip and this makes the pain go away for a couple of hours, but then it comes back, as big and as bad as before. I usually figure out the direction to go in myself, I think I just needed to vent today.
Update 29 Jan 2001
Sheryl (Falino) Laurinaitis, 45, died of cancer, January 16, 2001. Rest in peace Sheryl, we will miss you.
Update 16 Jan 2002
Oh, what I would give to see your face,
to hear your laugh to touch yourhand.
No one knows the ache in my heart
when I think of you.
I will miss you every day of my life
until we meet again.
In loving memory - Husband John
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