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JANUARY 23RD - 2009 What a big day. First it is an anniversary of sorts. John and I started dating on this day, 14 years ago. We call it our french fry anniversary but that is a story for another day. Who would have guessed that 14 years to the day i would be sitting in a Neurosurgeons office anxiously awaiting him to read my four MRI's and tell me my fate. I had been nervous for the last 6 weeks but it slowly built every day until this last week I was a wreck.
(my appt. was suppose to be jAN 28th but they had called to reschedule me to Feb 23rd. i was in the grocery store when I took that call and I THOUGHT it was them calling to tell me there was a cancellation and they needed to see me right away. So - clearly, i lost it and started to cry. The lady calling felt so bad that she asked the doctor to clear some time and make room for me, and possibly other patients that had waited over a month. They called back and gave me an earlier appt. the very next week)
SO, I had read a bit online and I knew a little something about the terms and the surgery associated with Chiari (Kee-R-ee) I was really worried that the doctor would see fluid on my spinal cord (on the 3 new MRIs) and I would be having surgery within days. SO - it was an instant relief when we sat there and went thru my films and heard that it was infact Chiari - type 1 and that I had little of no fluid on my spinal cord. I was instantly celebrating because I knew for the most part the emergency of the situation was not as i had feared. Then he went back to the original brain scan. A person without Chiari would have numbers like 2-4MM. I don't have my technical terms in front of me with the specific names - but it is the amount of the brain (cerebellum) that dips down crowding the spinal cord. Mine comes down 15-16MM. I was hoping for a lot lower number. I have read enough online about people having surgery/etc. and 18mm seems to be a magic number where people are getting surgery. I asked if there was a general time frame. Are we talking months or years before i am at 18mm? He said there is NO study. He has a patient that dropped 4MM in 11 years. (but that is just one case he knows of) That's somewhat encouraging, but i guess all and all it still means it's just a matter of time before I will need brain -decompression surgery.
The good part is - I am an extremely optimistic person so I don't think this should weigh be down much. (i could be wrong) I do believe that everything in our bodies is connected, positive thoughts, taking care of myself - etc. and if i can do those things I think I will buy myself some time. I am in pain everyday and have annoying symptoms, but i am very thankful that so far it does not inhibit anything I want to do. and it is only when I can't do things, or things are too painful that we will reevaluate the situation. Until then I am going to physical therapy once a week to work on the pain in my neck and back. and I will need an MRI every 6 months.
On a side note - here come the medical bills! I have my first MRI bill for $575. (thats my share) then i have a bill for 3 more coming. Along with 2 specialists. The imaging center told me it is fine to break my payments up in to 6 monts. With 4MRIs that is still $384/month -6 months. Not sure how THAT is going to happen.
(my appt. was suppose to be jAN 28th but they had called to reschedule me to Feb 23rd. i was in the grocery store when I took that call and I THOUGHT it was them calling to tell me there was a cancellation and they needed to see me right away. So - clearly, i lost it and started to cry. The lady calling felt so bad that she asked the doctor to clear some time and make room for me, and possibly other patients that had waited over a month. They called back and gave me an earlier appt. the very next week)
SO, I had read a bit online and I knew a little something about the terms and the surgery associated with Chiari (Kee-R-ee) I was really worried that the doctor would see fluid on my spinal cord (on the 3 new MRIs) and I would be having surgery within days. SO - it was an instant relief when we sat there and went thru my films and heard that it was infact Chiari - type 1 and that I had little of no fluid on my spinal cord. I was instantly celebrating because I knew for the most part the emergency of the situation was not as i had feared. Then he went back to the original brain scan. A person without Chiari would have numbers like 2-4MM. I don't have my technical terms in front of me with the specific names - but it is the amount of the brain (cerebellum) that dips down crowding the spinal cord. Mine comes down 15-16MM. I was hoping for a lot lower number. I have read enough online about people having surgery/etc. and 18mm seems to be a magic number where people are getting surgery. I asked if there was a general time frame. Are we talking months or years before i am at 18mm? He said there is NO study. He has a patient that dropped 4MM in 11 years. (but that is just one case he knows of) That's somewhat encouraging, but i guess all and all it still means it's just a matter of time before I will need brain -decompression surgery.
The good part is - I am an extremely optimistic person so I don't think this should weigh be down much. (i could be wrong) I do believe that everything in our bodies is connected, positive thoughts, taking care of myself - etc. and if i can do those things I think I will buy myself some time. I am in pain everyday and have annoying symptoms, but i am very thankful that so far it does not inhibit anything I want to do. and it is only when I can't do things, or things are too painful that we will reevaluate the situation. Until then I am going to physical therapy once a week to work on the pain in my neck and back. and I will need an MRI every 6 months.
On a side note - here come the medical bills! I have my first MRI bill for $575. (thats my share) then i have a bill for 3 more coming. Along with 2 specialists. The imaging center told me it is fine to break my payments up in to 6 monts. With 4MRIs that is still $384/month -6 months. Not sure how THAT is going to happen.
