From: "Tasha Scott" tzanetta@hotmail.com
Sent: August 2, 2004

My husband Sean's story began sometime in 2002. In June of 2002 we found out I was pregant with our first child. Around this time Sean had what we thought was a REALLY bad head cold or the flu. All of the symptoms cleared up except dizziness and naseau. Sean went to see a few different primary care physicians and they all seemed to think he had an inner ear infection. For months we joked that Sean was having my morning sickness. Then we took a trip from California to New Orleans for Thanksgiving and as soon as we got to the hotel Sean was vomitting and very dizzy. The whole trip he was miserable but we thought it was motion sickness. Then our son (Devun) was born. Sean was so dizzy he couldn't rock Devun to sleep and was scared he would drop him. We went back to see Sean's Doctor again. Finally, in October 2003 an ENT (Ear, Nose and Throat) doctor issued an MRI. We got a phone call that night and were sent to see a neurosuregon that same week. We were told Sean had a Cavernous Malformation on the PONS area of his brainstem. Sean at the time was 27 years old and very active (snowboard, wakeboard, skateboard, golf, etc).

After consulting with two of the best neurosurgeons in the Bay Area, doing lots of research and weighing the risks we came to a decision: Sean would have surgery with Dr. Lawton at UCSF in December, 2003. Dr. Lawton told us that it would be about a 2-week total recovery and about 3 days in the Hospital. This didn't sound too bad to us; especially considering this thing would be gone forever. Sean's surgery was supposed to take 4-6 hours. Ten (10) hours later we finally got news that his surgery was over. Dr. Lawton told the family that the surgery was a success but the CM was "Sticky" to the brain. He thought that this might cause Sean to have trouble swallowing but he didn't know if this would be permanent or not. Also, we found out later that the CM was deeper inside his brainstem than anticipated.

However, NOTHING prepared me for what I experienced when I got to Sean's room!!! Sean had somehow bitten his tongue coming off the anethesia. His tongue was swollen so big it was outside of his mouth and he could barely breath. He was in restraints and kept pulling up against them with his left side only. When he opened his eyes they just rolled back into his head. I actually thought before this moment I was going to talk to my husband but there was no sign of him at all. Eventually, they had to put in a breathing tube because his tongue was blocking his airway. He remained in this condition in ICU for the longest and saddest 9 days of my life. They kept him sedated except for the neurological exams where he still couldn't move the right side. Finally on the 10th day they took out his breathing tube. He still couldn't talk because his tounge was so big but finally some progress. They started to take him off the sedation so I could communicate with him a little. I think the best moment for me was when he "flipped me off" because I knew Sean was in there somewhere. The more awake he was the more he wanted to get out of bed. If I were not at his bedside he would have to be in restraints. He wasn't able to swallow his own saliva, but he was starting to move the right side a little. At this point we still had no idea if Sean would ever recover from this and the Doctor's didn't seem to have any answers.

After about 2 weeks at UCSF, Sean was transferred to a local in-patient rehab program much closer to our home. We spent our baby's first Christmas in the hospital but he was improving a little each day. He was having bad headaches, vomiting, and sensitivity to light, double vision and weakness/numbness on his right side. But he could talk, swallow, walk with a walker and he was passing all of the cognitive tests. After about 3 weeks in the Rehab. Hospital Sean was released to go home. I stayed home with him for the first week and he received in-home therapy for about 2 weeks. At this point he was able to take care of himself.

Overall, Sean's recovery has been MUCH slower than anticipated. It is about 7 months post surgery now and his improvements have been amazing. Our life is finally starting to get back to normal. He is walking mostly without assistance, still wears a patch for the double vision and has some weakness on his right side. But he can swallow, eat, walk, hold our son, drive a little, work full-time, help me around the house, etc, etc. Next Sean is hoping he can get back to the things he loves - snowboarding, golfing, etc. The surgeon told us he expects Sean to make a full recovery in about a year and this FINALLY seems possible. What is that saying "patience is a virtue"? YES IT IS

May 2007 Update

Just a short update on Sean’s Recovery. It has now been 3&1/2 years since Sean’s surgery and we have been told by his doctor’s that the recovery is over. Sean has learned to just deal with and work around deficits he is left with from his surgery. His deficits still including terrible balance, poor motor skills on his right side, sleep problems and occasional headaches. He has learned to write left handed instead of right handed and tries his best to keep up with our 4-year old son. As he puts it he, "fakes it well". All in all our lives are pretty much back to normal. On the bright side we have now 2 beautiful and energetic young boys. Sean has changed careers and has been very successful as a realtor and loan officer. I feel very lucky to have the life I have and try to not think about what life would be like if he didn’t have the surgery or if we would have waited for the next bleed, etc. These are the cards we have been dealt and we are making the best of it.

Tasha Scott
SF Bay Area, California