I read many of these stories of survival and death due to AVM's earlier this year, but did not think I would be writing one. The many stories I read some 5 months ago were very educational, and somewhat comforting.
I lost my girlfriend Sandie on September 14th, 2001 due to a major bleed from her AVM. Basically the entire left hemisphere of her brain was full of blood, and there were no acceptable options given to us from the surgical team at UPMC Medical Center in Pittsburgh, PA. Myself and her family opted to have the respirator taken off at 9pm on September 13th, and Sandie died at 11am on September 14th.
Sandies battle with her AVM began in late 1993 when she suffered a grand mal seizure. She was rushed to a local Youngstown, OH. hospital, where she was referred to UPMC Medical Center in Pittsburgh. She was diagnosed with a 5cm AVM that was swollen, and had triggered the seizure. Early in 1994 the AVM was embolized, and zapped with the Gamma Knife. Other than a few headaches, and a lack of energy from a 800mg daily dose of Tegretol, Sandie went on with her life. In March of 2000 a second Gamma Knife surgery was performed. The AVM had been reduced in size to one cm, and Sandie was told that this second dose would shrink it to nothing! Surgical removal was not an acceptable option because her AVM was located right next to her speech centers.
I met Sandie in August 2000, and we spent 8 great months together skiing, camping, going out to eat, and just having fun. We were very much in love, and had an absolutely wonderful time together. Everything came to a grinding halt on April 1st, 2001. We were in bed, and just about to go to sleep when Sandie told me she was going to have a seizure. She told me if she did not snap out of it in 5 minutes to get her to Pittsburgh. I found out some 30 minutes later that she had had a major bleed. She was taken by ambulance to Pittsburgh (helicopters were not flying due to weather). In Pittsburgh at UPMC Presbyterian surgery was performed to stop the bleed.
Sandie made a miraculous recovery from this first bleed. Her speech was affected greatly, but she was getting slowly better, and could carry on a conversation. Sandies memory was unaffected. Her right side was hit pretty bad though. Her right arm had a great deal of tone, and was nonfunctional. Sandies right leg was slowly but surely coming back. She was walking with a left handed ladder type walker, but spent virtually all of her last 5 months in a wheelchair.
Sandie went from the hospital to an acute rehab, and then to a nursing home. We had been living in an apartment with many stairs. I looked for a wheel chair assessable apartment, but after much frustration ended up buying a wide-open ranch style home. I got Sandie out of the nursing home on August 8th, and we moved into our new home on August 10th.
The neurosurgeons at UPMC wanted to embolize, and remove this AVM on September 10th. The embolism was attempted on September 7th, and was not successful. We were told that the AVM was so small that there was nothing to embolize, or remove. Sandie was discharged on September 8th. We were told nothing needed to be done, and to go about the business of living, and recovering. We celebrated for several days, and were all in disbelief, and thought all ours, and so many peoples prayers were answered.
I found Sandie half dead on our couch at 6:30 am on Thursday, September 13th. She was often restless and would go out and sleep on the couch in the middle of the night. We had Sandie life-flighted to Pittsburgh. In our discussion with the neurosurgeon we were told that Sandie's AVM was actually feeding healthy brain tissue, and had surgery been done on the 10th, she would have experienced loss of her ability to speak, swallow, and additional damage would have occurred to her right side. There was nothing that could be done after this bleed. Sandie was 48 years old when she died.
I had never heard of an AVM prior to this, but I know now that they can certainly kill you. I watched Sandie struggle to recover from the first bleed over the last 5 months. She was a dear sweet woman, and the love of my life. Myself, her sister, sons, and family are utterly heartbroken.
All of our lives were turned upside down by this AVM. If you have an AVM, or a loved one is diagnosed, get it taken care of. I am remiss that Sandie would not allow a second opinion from The Cleveland Clinic. I don't think anything could have been done, but would have felt some comfort in knowing for sure.
I am alone again in this new home, and without my Sandie. I am grateful for the time I had with Sandie. I hope that this story will give some comfort to someone, and to myself.
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