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Brain AVM

By NICOLE RICCI

My name is Nicole Ricci and I am 25 years old. I am from Toms River, New Jersey and I had an AVM removed on 11-22-02 at Columbia Presbyterian Hospital in New York City.

I was sitting at home one evening after working talking to my husband and father in-law when all of a sudden out of the clear blue I got this extremely bad headache, I felt like I was being hit in the head with a ton of bricks, it lasted badly about 5 minutes then slightly went away. I thought it was a migraine which I have had about 4 in my life about 3-5 years ago, the reason I thought it may be a migraine was because I felt I had to lay down, I got very nauseous and my vision was very fuzzy and I got very tired. I went and laid down then I felt like I was going to vomit so I went into the bathroom and sat in front of the toilet bowl and the headache came back bad, I began to vomit and I did non stop and the next thing I knew I was in bed, my husband had came in to check on me and found me passed out, he put me in the shower as I lost control of my bodily functions and was dirty, I slightly remember being in the shower with him trying to hold me up and wash me and asking me if I could stand up a little, I gave no response except I just wanted to sit because I had no strength in my legs, I was like I rag doll. I argued with him about going to the emergency room, I have never been in the hospital and I think I was scared to find out what was really wrong. he tried to get me there for days but I would not go then finally I went to see my family doctor who diagnosed me with viral meningitis, I said to myself o great what is this.......but little did I know my AVM had actually ruptured and was bleeding, I didn't even know I had an AVM. then two days later after sleeping for almost a week, I decided maybe I should go to the hospital because I was getting worse, so we went and they did a brain ct scan and told us I had bleeding in my brain and due to the bleeding they didn't know if it was an AVM or aneurysm. I was then sent to another hospital via ambulance that dealt more with this and had a neurosurgery team for brain disorders, at this point I'm thinking to myself that doctor must have the wrong person but I went to Monmouth hospital in long branch new jersey about 20 minutes away from my home with my ct scan films and the neurosurgeon there also couldn't tell what it was because the blood was covering it up. I stayed over night and the next day I was again transported to Columbia Presbyterian Hospital in New York. I saw a great team of neurosurgeons there. The reason I was sent there was because the neurosurgeon I saw at Monmouth hospital partner was away on conference and he did not perform brain surgery alone and he was also part of the team in New York. Finally the team in New York gave me an angiogram and then saw it was an AVM in the right frontal lobe of my brain I believe it was 2cm and I was born with it but we never knew. At this point I was really out of it, highly medicated and I was so scared. My parents flew in from Florida right away and my whole family was there with me. I had ct scans and MRI's and they decided I would need a craniotomy to remove this AVM but it could not be down until the brain swelling went away. I was put on steroids and a bunch of pain meds, then after a few days I was sent home. Well that was at the end of September, between then and November I was in and out of the hospital I can't tell you how many times. I had a reaction to Dilantin and a very bad reaction to Tegretol. I actually looked like a burn victim. I had a spinal tap done because I was having a lot of trouble with my eyes which I always had perfect vision, I also saw a neuro-opthalmologist and come to fine out I had an extremely high amount of cerebral spinal fluid which gave me a blind spot in each eye and swollen optic nerves. So I went through the first surgery of my life. I had a lumbar shunt put in to help control my spinal fluid. It worked for about a week or two, then I couldn't even sit up for 3 minutes without getting a headache and I went back to the hospital to find it was over draining so I was put on iv fluids to level it out, it helped and back home I was. My dr. decided when I have the craniotomy he would remove the shunt and hopefully taking the AVM out would fix the problems with the spinal fluid and my eye sight.

Finally on 11-21-02, I had my embolization and on 11-22-02 I had the craniotomy and shunt removed. It went well about 6 hours in surgery but my dr. had a lot of trouble taking out the shunt as he could not control the spinal fluids leaking out so he sewed up the spinal sack and hoped it would not leak through my incision. I was in the hospital for about 4 days, 2 days after the craniotomy I was up walking, I needed no physical therapy or walkers I was doing great on my own and I was so surprised I was already on my way to recovery. I was sent home and I said to myself this is it, it's all over with now little did I know. a few days later sure enough coming out of my back incision was clear water like fluid, my husband called my dr. and he knew right away it was spinal fluid so back I was in the hospital in New York, I had a spinal drain put in and had to lay on my back for 5 days I could only get up to use the restroom. How uncomfortable I was my legs were sore and stiff and my hips hurt, I was also given heparin shots so I didn't get any blood clots but I had nose bleeds. I was very upset because I was stuck in the hospital for thanksgiving which is my favorite holiday and my parents were up so we could have a nice thanksgiving. After 5 days on my back, my dr. took the drain out, stitched me back up and we just crossed our fingers that it was only excess fluid from the surgery and that it would not leak again, I was sent home 2 days later and thank god it did not leak. So now I was really finally done and on my way home to finally recover in my own home and my own bed. I was doing great just very tired and I was put on Keppra 500mg twice a day to prevent any seizures since I have never had one......

I still see my neurosurgeon every 3 months and he is so happy with my recovery and how well I have done with all this. It has now been 3 months since my surgery and I will return to work in April, part time for now until I get back in the swing of things. I have to nap everyday for about an hour, I get tired easily. My family and I had a great, big, happy Christmas and also my husband's family. They made it a very happy, thankful time. I think we celebrated Christmas for about 2 weeks.

I now realize how precious life is. I do have problems with my moods and emotions but I was told where my AVM was located controls your moods so over time it will get better and my memory is basically back to normal sometimes I will ask the same things a few times or check my medicine box a few times to make sure I took my medicine but I've come a long way. I had a wonderful neurosurgeon Dr.Connolly who I thank for saving my life and I love to go see him for my visits, he's such a great person and is always there to answer any questions I have. I am amazed and how I recovered from brain surgery and I even though at times I was so frustrated and upset about everything I always thought positive and that had a very big part in getting through surgery and my recovery.