Mimi
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Good afternoon all,
I am a 29 year old female from the NYC area. I have always had migraine headaches since I was a child as well as insomnia, but my whole MMD saga started last year around this time. I had just had bilateral strabismus surgery on my eyes and started experiencing an excruciating headache over my right eye and loss of sensation in my left hand. I was taking approximately 1200 mg of ibuprofen per day to try to combat the pain to no avail. I was also experiencing memory loss and was very unbalanced and disoriented. My ophthalmologist thought that the headache was a result of my eye stitches being too tight thus I did not bother mentioning the loss of sensation in my hand. Three weeks later I started experiencing slurred speech and drooping on the left side of my mouth. On March 3, 2009, my mother, a nurse, advised me to go to the emergency room when I explained my symptoms to her. I almost refused then I decided "what the h-ll, I am off from work today and it is still kind of early in the day". When I got there, the ER doc assessed my symptoms and did a ct scan immediately. She came back and informed me that I would have to stay overnight for observation and have an MRI in the morning because my CT showed some abnormal areas. My primary care doctor was called and I was moved to a room.
That stay lasted ten days as the MRI showed that I had, had multiple TIAs and they did every test in the book to find out why. I am overweight so their first thought was that I had blockage in my heart so they did a TEE, where a camera was stuck down my esophagus to get a clear picture of my heart. That test came up negative for any problems. I then had repeated MRIs and blood work as well as a lumbar puncture aka spinal tap, which was the most painful exam I have ever had in my whole life. I was interrogated daily about drug use, past head trauma and my family history, all which lead nowhere as I am drug and alcohol free, I have never had any head trauma and there is no family history of stroke. After the tenth day, I was released and referred to a stroke specialist, Dr. Joseph Schindler at Yale Hospital in new Haven, Connecticut with the diagnosis of right mca stenosis, but they still had no clue what caused it. I was also given a prescription for aggrenox.
As soon as I got home, I experienced headaches far worse than the headaches I had before they discovered the TIAs. My friends and I drove the 45 minutes to New Haven, CT to see Dr. Schindler at Yale. He was unable to exam me because my headaches was so bad. His staff took me to their ER where I spent the remainder of the day. The did another CT to make sure there was no hemorrhaging and I was instructed to stop taking aggrenox and just take 325 mg of aspirin. That seemed to work for awhile until…
One night in April, I was up late (I was having trouble sleeping) tidying up my bedroom and my left side became very stiff, started tingling then went limp. The whole thing lasted no more than 60 seconds. I then slid down my stairs and had my sister take me to the emergency room. They did an MRI and found no new areas of stroke, but kept me overnight for observation. That hospital stay lasted 3 days. I went to see Dr. Schindler again and he suggested that I come into his hospital for an angiogram/catheter study. The study was done on April 16, 2009 and concluded that I definitely had right mca stenosis as previously thought and that the damage is extensive. The cause was still unknown. I was referred to a neurological surgeon to discuss my options. The next week, I saw Dr. Ketan Bulsara at Yale. He looked at my scans, told me that surgery (encephaloduroarteriosynangiosis) was my only option, but he did not want to explore that yet as superficially, I looked like I was fine and the surgery is major. I was not happy with his opinion as it seemed as if my situation was hopeless and I desperately wanted to have a baby, which I could not do while I was dealing with this.
In May, I had another “episode” and was hospitalized again. That lasted three days and I was put on 75 mg of plavix and 81mg of aspirin daily. I was instructed to see Dr. Bulsara again, which I objected to because I did not feel as if he was treating my case with urgency. I ended up seeing him again because he is the closest neuro-surgeon covered by my insurance policy. He was a lot more serious this time and suggested that I see Dr. R. Michael Scott at Boston Children’s Hospital to give his input. Dr Scott reviewed my scans with me in September 2009. Dr. Scott felt that surgery was in fact my only option, but he felt that 1) given my weight, surgery could be very dangerous and 2) an STA-MCA bypass would be a better option for me and referred me to Dr. Arthur Day at Brigham and Women’s Hospital. Dr. Day is not covered by my insurance policy (neither is Dr. Scott but I was able to see him because of a second opinion clause in my contract), so I was not able to see him until I had two more “episodes” in September and November and Dr. Schindler’s office decided to step in to contact my insurance company and explain to them the gravity of the situation.
I was approved to see Dr. Day in January. He is as great as everyone says he is. He sat me down and went through all my scans with me and explained in layman’s terms EXACTLY what type of damage I have, what can or cannot be done to fix it, and how quickly it needed to be done. As the others concluded, he did see extensive damage in my right middle cerebral area, but he concluded that it was in fact moyamoya disease, which was thrown around before by the other doctors but dismissed because I do not have family history of it. I immediately felt at ease with Dr. Day and decided to go thru with the surgery with him as my surgeon.
My surgery is scheduled for February 23rd at Brigham and Women’s Hospital in Boston. This is a relief after nearly a year of uncertainty. I understand that the surgery will not dismiss the possibility of having another TIA, but I know that there is a good chance that it will decrease the chances. My family and friends are of course freaking out because they had no idea how bad my situation was.
I seriously wish that I would have found this site sooner. I was very frustrated by my doctors dragging their feet trying to make a decision about the surgery, but I see now that this is a common thing when dealing with MMD.
I have all the confidence in the world in Dr. Day, but I am still a little scared. Any advice?
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