I am a 29 year old woman. I live in New York with my husband, Chris, and my cat, Dr. Solomon (named after my neurosurgeon). I was diagnosed with an AVM on October 8, 2001.
My purpose in writing this is not so much to tell my AVM story, but rather to talk about what I did to get through the surgery that I had in the hopes that I can help someone else who has to go through it. I was so utterly afraid of surgery. The thought of being unconscious for 6 or so hours was unbearable to me. To give up that control was unthinkable. The idea that I may not wake up was unfathomable. Although I was given a very good prognosis, there was still a 1-2% chance that I would die or would have a "catastrophic" event. Though 1-2% sounds like a small risk, when it is your life or your mobility that is at stake it looms large. So what I did was this, I went to a therapist who made me a personalized self-hypnosis tape. On this tape were suggestions for my subconscious which would prepare my body for the surgery. You may think that this sounds like new-agey bullshit but I swear that having this tool changed the entire way that I saw this process.
The therapist! explained that although when you are under anesthesia you are "unconscious" your sub-conscious is still very much awake and it's only purpose is to regulate your bodily systems. In fact, it is when we are conscious that we do the most harm to ourselves with our negative thoughts and patterns. If you are training your subconscious to receive instructions that will benefit your body then, since you are not awake to disrupt those suggestions than your sub-conscious will work for you not against you. Does this make sense? It's late so i'm tryng to be as coherent as possible.
Anyway, since one of the biggest dangers of AVM surgery is the possibility of bleeding I had her concentrate on making suggestions on the tape that would assure that this would not happen. Such things as, 'the blood is flowing away from the area of the brain that is being operated on it is clear and dry so that the doctors can see exactly what they are doing.' Another thing I concentrated on was relaxation because I was so freaked out. So on the tape she would say things like 'on the day of the surgery you are calm and clear'. I also did my own visualization of my brain and tried to picture the area where the AVM was as being clear of blood. I did this practice every night for 2 months before the surgery and it gave me a great sense of peace, and more importantly, control over my own destiny. So often, when we are patients, especially during surgery, it is so frightening because we feel like we are just being put to sleep and worked on by doctors and everything is beyond our control. This way we are participants in our own surgery instead of just passive receivers.
On the day of the surgery I had a feeling of overwhelming calmness (which I never felt before or since) and when they took my blood pressure right before I went under it was 110/60 (it's normally 120/80 and usually shoots up when I'm around ANY doctors, even just for a yearly exam at the gynecologist). They removed the entire AVM and I had no neurological damage. I was discharged from the hospital in two days. The first thing I asked my doctor when I woke up was if I bled a lot during the surgery (they anticipate that you will lose up to 1 pint of blood). He said I did not bleed at all. Nothing. Maybe he was just a really good doctor (he probably thought so) but I was so proud of what I had done to prepare that I felt like the success of the surgery was as much mine to claim as it was his.
In addition to the self-hypnosis I eliminated ANY possible blood thinners before the surgery and I drank three glasses of fresh beet juice every day (beets build up the blood). I hope my story helps someone. If anyone is interested in doing their own relaxation and self hypnosis they can e-mail me and I can dig out the books and tapes I have on the subject to try to give some suggestions. there are many
Update: 18 Feb 2003
Though my surgery was very successful, I would feel incomplete if I did not address the issue of the healthcare problem in this country and the struggle I had to go through in order to get this surgery.
When I was diagnosed with the AVM I was self-employed and did not have health insurance. In my naivety, I simply assumed that if I was sick and needed help, I would get it. When I realized this was not the case, I was saddened and disgusted that I couldn't seem to get anybody to understand that my life was at risk and that I needed immediate help.
I applied for Medicaid and was told that I would get a response in 30-45 days. When I applied, I had some resources and was never told that this would be a problem (I was expected to know complex and convoluted Medicaid laws). The agency did not respond in the allotted time period and when I contacted them they had not even looked over the case yet. The case worker proceeded to treat me with disdain and contempt. I sought legal advice and, as it turned out, the advice I was given by my lawyer only served to cement the fact that I was to be denied.
After months of writing letters and making phone calls I was finally put on the Family Health Plus Program (a new program in NYS designed to ensure more health coverage for New Yorkers). I did not really qualify for this program but they put me on it because I was making such a stink. The program is actually really bogus and the eligibility requirements are not that much more flexible than Medicaid.
I was finally able to schedule my surgery but then had to fight again with HIP, the HMO I was forced to choose through FHP, in order to have my surgeon perform the operation. He was not in their "network," and, according to them, they had doctors that were "just as qualified" to perform this surgery. My doctor, Dr. Solomon, at Columbia Presbyterian Hospital was the head of neurosurgery, specialized in AVM's and had performed over 500 of these operations. I tried to explain to the "qualified medical staff" at HIP that AVM's were relatively rare and therefore there were very few surgeons who specialized in their treatment. They still insisted that their surgeons were just as qualified and they preceded to give me a list of doctors. I did my research on each doctor and was able to eliminate them one by one and demonstrate beyond a reasonable doubt to HIP that Dr. Solomon was the most qualified person to perform this surgery. They finally relented after I wrote still more letters to NYS officials (which I cc'd to them).
In the end, I did get the surgery with Dr. Solomon, and it was very successful. The fact that I had to fight every step of the way was more demoralizing and anxiety producing than having the condition itself. I have since joined PNHP (Physicians for a National Health Program) and I have applied and been accepted to law school. I am determined to try to ensure that others don't have to go through what I went through. We are the ONLY civilized Western Country that does not have some type of universal health care and it's time to change that. There are 43 Million people in this country without health insurance and those that do have it are routinely mistreated by their HMO's. The intention of the health care industry is to divide and conquer. They have convinced Americans that it is better that some people have health coverage in this country and that they pay through the nose for it than that all Americans should have health coverage.
The HMO industry has used their lobbyists and strong arm tactics for so long that they seemed to have convinced us that getting necessary health care is a privilege, not a basic right.