Just curious to hear from those who also have a syrinx and have been on the "wait and see plan." Did your syrinx increase in size and if so how rapidly? I'm not trying to form any conclusions about my own situation I'm just curious to hear the experience of others. I have met several people in my area that have Chiari and have had decompression but none of them had/have a syrinx. On July 16th my syrinx went to the level of C5. Today I picked up the results of my latest MRI/flow study (from last week) and my syrinx now goes to the level of C6. (in two months time) My NS wanted to "wait and see" for 6 months but the results show a complete blockage of CSF flow posteriorly and an obstruction with pulsatile flow anteriorly. I guessing I will be headed for decompression soon. My PCP has already told me (prior to this MRI report being finalized) that if I have flow blockage and the NS doesn't agree to decompression he will immediately send me somewhere else. He wasn't happy with the "wait and see" approach, although he and I both understand wanting to weigh the risks versus the benefits of such a major surgery. I am very grateful to have him in my corner.
Hello, I had to become your friend because i also have goats!! Just love my little girls have some Alpine's that i milk and make soap and cheese just a hobby of mine to de-stress from my nursing job, but also really like the soap and won't use anything else anymore, wonderfull stuff.
Ok now to the Chiari, I am also on the "lets wait and see approach" and been getting sicker with every passing month and my PCP is great, i have seen 3 NS who seem to think that i can live just fine with my headaches since if done so for 46 years, the pain in my arms that is about to make me cry is also of no concern to them, and being dizzy and having passing out spells seems to be no problem in the world of Neuro Surgery.
I am getting ready to make an apt with the dr in Colorado, Dr. John Oro at the Chiari Center, if he also things i need to wait only then will i try to somehow learn to deal with this.
How are you feeling? I feel not so well most of the time but still work and muddle through life...but i don't have the synx nor have they told me that i have blockage, just herniation of my tonsils 7mm one side and 5mm the other, but all my tests are not completed. My flow study came back ok so it sounds as if my fluids are flowing just fine.
I'm going to respond to you in a message. I'm not the best with this site yet, so let me know if you don't get it. :)
silvia said:
Hello, I had to become your friend because i also have goats!! Just love my little girls have some Alpine's that i milk and make soap and cheese just a hobby of mine to de-stress from my nursing job, but also really like the soap and won't use anything else anymore, wonderfull stuff.
Ok now to the Chiari, I am also on the "lets wait and see approach" and been getting sicker with every passing month and my PCP is great, i have seen 3 NS who seem to think that i can live just fine with my headaches since if done so for 46 years, the pain in my arms that is about to make me cry is also of no concern to them, and being dizzy and having passing out spells seems to be no problem in the world of Neuro Surgery.
I am getting ready to make an apt with the dr in Colorado, Dr. John Oro at the Chiari Center, if he also things i need to wait only then will i try to somehow learn to deal with this.
How are you feeling? I feel not so well most of the time but still work and muddle through life...but i don't have the synx nor have they told me that i have blockage, just herniation of my tonsils 7mm one side and 5mm the other, but all my tests are not completed. My flow study came back ok so it sounds as if my fluids are flowing just fine.