I met with my Neurologist just a week or so after the diagnosis results over the phone. We spoke about the fact that many of my symptoms are from thesyrinx, and some from the Chiari. I was shocked to learn that without treatment to shrink and vanish the syrinx...it would eventually leave me paralyzed. So I asked to see the mri images and he took us to a differant room to see them on the computer. I dont know what I was expecting to see, but certainly didn't prepare myself for what I saw on that computer screen. It scared me, and was relieving at the same time. The sea of emotions came over me as I sat there next to the Neurologist; with Andy (my husband) and my 4 yr old daughter Riley standing behind me, I was in my own world and it came crashing down! The tears started to roll down my face as I came to learn the reason for the symptoms that have been making my daily life hell! I was mad! I am a Mom to young children that need me, and my symptoms had been keeping me from a lot of things!-but mostly enjoying my family. Of course as my Neurologist put it; "this isn't a death sentence-just a differant lifestyle". I want back my life, my energy, my body, my happiness!
His plan of action was a referral to a NeuroSurgeon off base, as I most likely would need Chiari Decompression surgery to restore the flow of my CSF, and eliminate the syrinx eventually. So as I waited a week or so for the insurance to approve the NeuroSurgery consult I tried to emotionally and mwntally prepare myself for the fact that I would be deciding whether or not to have brain surgery now, or wait until things got worse?
Finally my authorization came in to see the NS and I met with Dr. Schmidt at The Spine and Brain Institute of Las Vegas in late March 2013. Dr. Schmidt came in and put my mri image up on the light box for us to look over. She informed me that surgery was NOT a choice, it was a necessity-something I did NOT prepare for. She stated that waiting longer would most certainly lead to irreversible damage and eventually paralysis. We have to do the surgery to hopefully get rid of the syrinx. She went over my symptoms and was hopeful that the Chiari Decompression Surgery would cause the syrinx to shrink and be gone over the xourse of the year which would also get rid of my symptoms. She seemed knowledgable, but almost over xonfident to me. From watching my own Mom, and speaking with other Chiari sufferers this surgery will NOT be a miracle fix. I tend to be much more of a realistic/logical thinker...though I try to stay optomistic!
Dr. Schmidt seemed like a perfecrly capable NS, but after speaking to a few other Chiarians, and doing my own research I decided to take advantage of asecond opinion from another NS. In fact, the highly recomended NS that I wanted to meet was also Dr. Schmidt's partner at The Spine and Brain Institue. So I scheduled right away with Dr. Seiff, since I already had authorization fe Insurance to be seen at their practice.
Dr. M. Seiff was GREAT! Andy and I met with him this morning. He did the usual first consult and went over my symptoms along with a Neuro exam. He explained some of my symptoms to me, and what it was and meant. He even asked Andy a few questions about my symptoms to get another perspective. He explained that his surgical plan would be a bit more agressive, in taking out a bit more of my skull to allow more room for the cerebral tonsils. He would also singe the tonsils to shrink them up a bit. The dural patch he uses in this surgery is from a fetal calf (yes-a cow) which would basically make the area at the back of my skull more spacious allow the CSF to flow at its normal rate. He is Board Certified, and is actually the Chief of NeuroSurgery division at Sunrise Hospital in Las Vegas. I called the office back this afternoon to let Dr. Seiff's assistant know that I would like my surgery to be done by him rather than Dr. Schmidt. The assistant Shannon said that they were having a lot of trouble getting the surgery approved by the insurance because the carrier of Tricare just switched to a new contract the beginning of April. She said that it would mean pulling their current request, and resubmit for approval with Dr. Seiff's name as the surgeon. This basically means it could be a longer wait (few weeks out from now) before we have approval from my insurance and a date for surgery. But, it still means surgery in the beginning of May!
I am still overwhelmed and struggling with many conflicting emotions. My reasoning for choosing Dr. Seiff even though it means more risk during surgery, is simply that I only want to have to do the surgery one time! I am ok with the more invasive procedure if it only means one time fix, and better results. Many Chiarians undergo multiple decompression surgeries due to the fact that the first surgery did not provide enough extra space for the cerebral tonsils, thus leaving them still suffering from symptoms.
Dr. Seiff said that this surgery should provide me many benefits as far as the symptoms from the syrinx going away. However, some symptoms will remain from damage that has already been done. One of the symptoms he mentioned would not get better is my "mental fog" ie:confusion, trouble focusing, memory issues, and forgetting words/vocabulary. Poor Andy...I am his memory! Lol. If mine gets any worse NOBODY in this house will know where anything is!
My next post will be an overview of my symptoms, what my diagnosis means, and what the decompression surgery involbes. Until then-thanks for your love and prayers! And for your interest and support in this rare condition. FYI-the purple ribbon supports Chiari awareness.
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