Well, my appointment with Dr. Gentili at Toronto Western hospital went well yesterday.
Hubby and I flew in and walked up to the hospital, stopping along to the way to drool over some Ducatti motorcycles and Lamborghini's in a shop along the way.
Dr. Gentili's fellow did an assessment, very basic history and viewed my MRI. The assessment involved the usual - strength, balance, eyes, ears, throat. He even checked my gag reflex as lack thereof is a sign of Chiari and more serious problems. He was very nice, fairly thorough, and answered our questions. He was intrigued by my knowledge of my own brain as I was able to identify my Circle of Willis and my Chiari herniation from the MRI. Said I had obviously been on the internet, to which I replied, it's my brain, I want to know as much as I can about it. The is no sign of hydrocephalus or syrinx and there is still just enough room for my CSF to flow between the herniation and brain stem. The fellow was of the opinion that I would not need surgery.
Then came in Dr. Gentili. A middle aged doctor with graying temples, a nice handshake and an odd taste in footwear. He reviewed briefly what the fellow had discussed with us and looked at my MRI. He asked about my symptoms. How many Chiari symptoms did I feel I had - 6 to 8 of the approximately 30. He figures 5 or 6. Not a bad guess on my part. We talked about the clinical aspect vs the symptoms of Chiari. Anatomically I have Arnold Chiari Malformation. It is not progressive, in that the herniation of my cerebellar tonsils will not increase or worsen. Then we talked about my symptoms. Were my headaches triggered by anything in particular? Straining, lifting, coughing, laughing, posture, etc.
Dr. Gentili said he has done surgery on people with less, the same and more of a herniation. The big question he asked:
How did I find my symptoms affect my overall quality of life?
Surgery, he said, would be based on how I felt my symptoms affected my overall quality of life. When the quality of life diminishes, then surgery is warranted. The choice was left up to me. Do I want to go ahead with surgery because the symptoms I experience are affecting my quality of life, or do I wish to wait and see how my symptoms progress. He said he would operate, late spring likely, should I decide.
Dr. Gentili also asked why I came to Toronto Western. I replied that he was highly recommended, my family doctor had had surgery at TW and my sister-in-law's friend had recently undergone brain surgery for a tumor and she couldn't speak highly enough about the care. And I said although I am confident in Dr. Haq's skills, I am not confident in our local hospital system. Dr. Gentili diplomatically said that he knew Dr. Haq and would not comment, but understood my choice to find a hospital with an actual neuorsurgery department.
Dr. Gentili also advised me about the risks of surgery. Infection, CSF leak, meningitis, stroke are all very low risk. As they are not interfering in the brain itself, the decompression surgery is fairly basic in terms of brain surgery. It is not like the removal of a tumor where it has attached itself to my brain and they are removing it. The will open the back of my skull, remove a portion of bone, open the dura, remove part of the horns on C1 vertebra, possibly C2 as well, use a dura patch from my thigh, and stitch me back up with a bigger space from my brain to live in. 2 to 3 days in hospital. He said 2 to 4 weeks minimum off of work sometimes up to 8 weeks, depending on the person and if any complications arise. Full recovery in 6 to 8 weeks but can be as long as 6 months with complications.
So, I didn't get the cut and dry answer I was seeking. I am still undecided on whether or not the have a 6 - 8 inch zipper (that's what the incision is called) in the back of my head and the decompression surgery performed.
I'm going to take until Christmas and monitor my current symptoms more, review my journals from 2006 to now as I have tracked headaches etc. since then. And think, think, think. Like Winnie the Pooh - think think think...