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Susan "Suzy" Winters

Update 8 Aug 2000

Last month (July, 2000) I received a call from my doctor in Boston and that they would like to see me. It has been three years since the stereotactic radiosurgery and they figured it was time for a visit. They had told me that we would have a consultation on Friday and then expect an angiogram on Monday and possibly some embolization on Tuesday. Whew, it was all going so fast.

We had made arrangements for the care of our daughter and headed out to Boston only 5 days after the call. After getting somewhat lost in Boston, we finally made our way to Brigham and Women's Hospital. We met with the Associate Chief in Neurosurgery, the Director of Neuroradiology, and then the Professor of Radiation Oncology/Director, Northeast Proton Therapy Center.

To make a long story short, they decided to send me home! Yes, home! The last radiosurgery was still shrinking my AVM so they gave it another year. They also changed my MRI/MRA schedule - instead of going every 6 months, I go once a year. I walked out of the hospital with a huge grin. I was feeling great. So great that I went and bought some lottery tickets. Ha Ha Needless to say, I didn't win! But, that is ok!

As for now, everything is going great. What I would like to say is "THANKS" to the whole group. We are not alone anymore - and that is a great feeling!

Original Story

Where Do I Begin...
I was 30 and it was in 12/96 when my daughter (Morgan, then 2) had a febrile seizure while we were out of town. It was her grandfather's birthday party, which she was too sick to go to. I had stayed behind to care for her when she had a febrile seizure (due to uncontrolled fever after a vaccination). Previously, while traveling, I had fallen asleep in the car and seemed to have pinched something in my neck. I was just a little uncomfortable.

I had contacted the restaurant where the birthday party was to have Doug (my husband) bring home some liquid Motrin, as the liquid Tylenol wasn't working on her fever. When my daughter started having her seizure I was by myself, so I called 911. Of course I didn't know the exact address -- my husband's cousins house doesn't cut it for directions. While on the phone with 911, my husband had returned. At this time I was experiencing severe head and neck pain. I thought that it was due to stress and excitement -- increased blood pressure.

We got her to the hospital -- thank God she was ok. My head was still extremely throbbing. After the weekend was over, we returned home and I went to my primary care physician. She decided that I had strained my neck so they put me through physical therapy for that. Sometimes it would feel better and other times the pain was so severe.

After completing therapy, the pain was still there. So, they put me on pain killers -- still not addressing the problem. Many trips to my physician and a few medications later, it seemed to get better. At this time I was pregnant with our second child and my neck would only give me problems occasionally. I would sleep only on my back and with the pillows a certain way.

I made it to March 22, 1997. At midnight I had done my typical trip to the bathroom -- with being pregnant, they are often. While washing my hands I vomited. It was a little, but I thought it was just the pregnancy. Then I began to feel my right side crumble. I had started drooping on my right side. I leaned on the bathroom wall and slid down to sit on the floor. I called Doug from Morgan's room -- she wasn't sleeping that well. Doug came into the bathroom and I was able to speak a few words to him about getting my insurance card to call my doctor. He came back with my purse as he was unable to find my insurance card, and I at that time was unable to speak. Every time I tried to speak, the words came out all wrong.

Anyway, an ambulance was called and they took me to a local hospital. I sat around while everyone tried to figure out what was wrong with me -- scared out of my mind. Unable to speak, I would just look at my husband terrified. God blessed me with him. He has been the greatest -- my backbone!

I ended up being taken to Westchester Medical Center for stabilization. There I laid around while someone tried to figure out what to do and where to put me. They ended up putting me with maternity, which was awful. At this time I didn't want to be reminded I was pregnant. This is a tough point for me.

Anyway, I was stabilized and the baby was terminated. At some point they had told me of my AVM -- who knew what an AVM was. I'd never heard it on "20/20" before. We had appealed our insurance company's decision twice and lost both. We had heard from one of the neurologists at Westchester of a doctor in NYC who was very well known. We lost so we were sent to Brigham and Woman's Hospital in Boston -- where actually we won. It came to be a very excellent hospital Once there, they did an angiogram and sent me home.

After that there were 2 embolizations, then came stereotactic radiosurgery. Depression set in. One of my embolizations was great and the other not so good. After the "not so good one" the doctors had thought that I had had another stroke. Nothing showed up, but what I had progressed to in therapy, I had lost. Time to learn to walk AGAIN!

And here I am. Just a little swelling with one of the procedures -- nothing a little steroids didn't take care of. Steroids are not good if your watching your figure. What an appetite!

This 8/99 marks 2 years since the radiosurgery and my doctors in Boston advised me recently that they want to wait longer, possibly 1-2 more years to give me more. My AVM was 7.9 cc in size. I think that the size scares the medical society.

Depression has subsided -- thank God. I continue in therapy and I enjoy my family to the fullest. It wasn't until this medical situation that I began to appreciate the things that most take for granted. I'm 33 now and already retired from work. I was a secretary for the government for 11 years. My husband is a chef in a small growing restaurant. We have moved to the area where I grew up -- rural New York. I want life the easiest for all of us. I actually feel great -- an occasional "brain cramp" but I'm doing great. Tah dah!!

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