Hi I am a survivor of sorts of a very large, dangerous AVM. When I was 19 I was working at a convenience store where I passed out. I came to in the ambulance and I was asked which hospital I wanted to go to. When I came to again I had already had a CT scan and I woke to my dad, fiancée and daughter in the room. Then the doctor gave me the news, I had an AVM. Not just the ordinary size (if there is such a thing) mine was larger than anyone at the hospital had seen. It is the size of an orange! After a short time I was released with instructions to make an appointment.
At my first appointment my neurologist set up an appointment with a surgeon. There I was dealt a huge blow. My parents and my daughter were in the room when the doctor came in. He commented to my mother about the cute baby, when I told him she was mine he about fell off his chair. He then told me, after asking about delivery, that people with AVM's often don't make it through childbirth because of the stress upon a mother giving birth. I was stunned. As it turned out she probably saved my life. Anyhow, He explained my options, which didn't exist. The AVM was the size of an orange and it was centered around speech and motor movement. In order to operate I had to live through 3 hemorrhages and then they would remove it because he figured after 3 I would be a vegetable and it wouldn't matter.
I was placed on Tegretol, which I hate and rarely take, until my grandma read an article in the Reader's Digest about Dr. Gary Steinburg at Stanford, Californina. I say my daughter saved my life because if I hadn't had her I would not have had state medical insurance to pay for all the procedures I was about to go through. Some people may hate me for that but without it I would not be here today, I am sure of it.
Upon speaking with Dr. Steinburg we set up a meeting. After we arrived and he had a chance to view my films he informed me that I also had an aneurysm that had to be attended to first before it ruptured. Five days and a huge scar later it had been removed. Now for the embolizations. I had 3 at first because during the 3rd one they "slipped" and I was paralyzed on my right side. It still is not 100% but I manage. I went back for the rest of the embolizations without incident.
After a time I was sent to Loma Linda for a bite lock head piece and to receive proton beam radiation. I think the fitting for the head piece was the worst thing I had been through, I cried. The radiation was not eventful and after 2 doses I was sent home to supposedly lose my hair. After awhile of not losing it I thought I had lucked out. My fiancée and I were going out on the town to celebrate when I noticed a huge bald spot. I didn't want to go but after buckets of tears we both realized that I was still here and we should make the most of it! We did.
I am now 27, I have another child (carefully this time) and none of these procedures worked for me. I have no insurance and the AVM is still as large as ever. I have seizures on occasion and I am at a loss as to where to turn. If anyone has answers or suggestions as to what to do please help me. I feel as if I am a walking time bomb and my life could be over at anytime. I just wish more people could understand this birth defect I was handed at birth! My new boyfriend buries his head in the sand each time I am not feeling well and it hurts me when he does this. He can't "see" a problem therefore there isn't one. Any comments or suggestions are more than welcome!!
Update 9 Nov 1999
Let me first start out by saying that this "family" has been a godsend. By speaking and reading of others with AVM's and aneurysms it has helped me in ways I never imagined. I used to feel so alone and now I have found strength I didn't know I had. Thank you to all who have written to me and and offered hope, strength and encouragement. Without you I don't know if I could have moved forward in my quest to have my AVM removed.
When I first posted my narrative I had lost my health insurance coverage. I asked a great number of people about their insurance coverage hoping to find ways to get mine reinstated. I had so many caring people respond to my inquiries and I want to thank each and everyone of you who took the time to try and help me find answers. Some even took my inquiry to work to try and help me come up with a solution. From stangers I have never before spoke with, wow. Bless you all, you are wonderful.
After seeing that complete strangers took it upon themselves to try and find answers I decided I needed to see what answers I could come up with. I wrote numerous letters to government officials in the state of Iowa in the hope that someone might be able to help me. After hearing "I'm sorry " for about the hundreth time I found my angel. My senator, Charles Grassley, has made it possible for me to have full health insurance coverage. I am so very excited. I can now go to have more testing and more treatment to try and rid me of this AVM. I can't believe it.
I am flying back to Stanford, Ca. to see Dr. Gary Steinburg and work out a target plan. On December 8, I will fly to Stanford, Ca. On December 10, I will have my first MRI and angiogram in many years. I am a little nervous but also very glad this day is fast approaching. I have heard of the risks associated with these tests, but I think they far outweigh the harm that could come from doing nothing. As of late I have had a seizure about once every 2 months. Although it's not much, they never were that frequent before. I hope everything they did before is still ok.
After the tests to target the AVM, Dr. Steinburg and his team will come up with a plan and I will fly back to Stanford for treatment. I hope to only have proton beam radiation and not embolization but only time will tell. When I had embolization before I had a stroke and I don't want that to happen again.
Once again, thank you to all who have been there for me. I appreciate you all so much! When I return from Stanford, I will update you again to let you know how it went and what is to happen in the future.
Oh, before I forget. I have heard the aneurysms are inheritable, does anyone have any knowledge as to the truth or fiction to that? I am concerned for my family. If anyone knows about this please send me any info you have. Thank you.
Update 21 Oct 2000
It certainly has been a while but it sure feels good to be able to chat with all of you again. A lot has happened since my last update so I will try to fill you all in.
I finally made my appointments to see Dr. Steinburg and he decided on 3 more embolizations. Now, I still live in Iowa and he is in California so it meant being away from my girls for a little over 3 weeks. I wasn't happy about that but what could I do?
I went to Stanford expecting everything to be the same as before but it isn't! They now have more "safety checks" in place which has it's good and bad points. They now glue wire leads onto my head and wrist to monitor my brain waves during the procedure. The leads on my wrist also allow them to send me electric shocks. The glue stinks like finger nail polish remover but you get used to it. The awful part is that they injected "fake" glue into my AVM and then they gave me electric shocks to see if it was ok for that part of my brain to receive the actual glue. They check to see if I would have a stroke if this section were to be glued. They have me laying on a cold table and they are shocking me for what seems like hours and it isn't little shocks they are sending. I swear that each time they picked a new spot the current were turned up! I understand, I am even grateful, that they test each section so that my risk of having another stroke during the procedure is dramatically reduced. I just wish they didn't have to send such a powerful shock!
After the first 2 procedures it was decided that I would need 2 more embolizations instead of one. I opted to go home and return in a month. I needed to see my girls! After being home for about a week I started to notice a lot of hair in the shower. I have long, curly hair so I naturally shed a lot of hair but it seemed to be just falling out by the handful. I had lost my hair before, after my radiation years ago, and this was like the same thing. A week went by and I kept ignoring the fact that my garbage can was filling up with my hair. I even switched shampoo because I didn't want to face the music. I finally called my mom and asked her to come over so she could take a look and see if it were true. It was. My right side was bald. Not all of it, but a noticeable chunk was. I started flipping my hair the other way to cover most of it but it's still bald. I just keep saying to myself that I would rather be bald and here than have my hair and not my life. Some days are easier than others to remember that.
I went back a month later and this time was supposed to be the end of the embolizations. Finally I saw the light at the end of the tunnel. After this third embolization I was told I needed more. I went into orbit. They had to be kidding. I couldn't believe they were changing thier minds again! I couldn't take much more of this. I may be a strong person but I had my hopes set that this was the end. They couldn't do this to me. I had just went through an embolization and they picked now to tell me. They made me calm down, high blood pressure is NOT a good thing, and told me we could talk after I got out of the hospital.
I made an appointment a few days later and laid it out for them. I have so far had 7 embolizations in my life, way more than I ever wanted. I wanted this done, period. I missed my girls, it was very expensive, and just how many times did I have to hear "2 more times" before it was true? They said they understood but there was only so much they could glue at a time and be safe. As for the "2 more times", each time they glued a piece, it changed the shape of my AVM. They had to balance my health against my need to be home. My brain understood what they said but my heart didn't. I left the meeting without resolving anything.
During what would be my next (and final) embolization I noticed it was taking a bit longer than usual. Usually they only work for about 1 - 2 hours. When they were done, they had kept me on the table for 5 hours. The doctors said they were done gluing and told me that radiation should take care of the rest. I was so happy!!
I have been home for 3 weeks and now the back of my head is going bald. I still can cover most but not on a windy day! I am coping better but I still wish it didn't have to be this way.
During the middle of November I will go back to Stanford for tests so the doctors can target the AVM. The hospital at Loma Linda will call me a few weeks after the tests to schedule me for my proton beam radiation. I am guessing I will have my radiation done during the first few weeks of the new year.
When I return from my tests in November and after I have been scheduled for radiation I will send you all another update. Take care