Ok, I know recovery is different for everyone. I am just curious where everyone else is. I am 8 months post-op, so I am thinking I should be healed up for the most part. I still experience the headaches, dizziness, brain fog etc. This list goes on and on. Everyday is different, in symptoms and intensity. I am fed up with my NL. He is useless. The other Chiari pts he sees have apparently had great success with the surgery and he has no idea what to do for me. Oh and the last appt I had with him he said it was migraines and Chiari was never the issue and that my NS meant well. I can't believe he would even say that, let alone about one of his collegues. I think he is just sick of me. Anyway, my PCP just did and MRA (MRI of the vascular system) and that came back fine. She just referred me to see a NL at the Milton S. Hershey Medical Center in Hershey, PA. I am glad, but at the same time...not really looking forward to it or expecting much. I am at a loss and I am sick of doctors and all the tests. Well, except for a CINE MRI, which I can't get anyone to do for some reason. Thanks for listening and commenting. I appreciate everyone's help. I am just so tired of it all and about ready to give up.
I am sorry you are still feeling bad. It does take a long time to recover. It is very frustrating to feel like you get no where with your "Specialists". Will your PCP order a CINE MRI? Don't give up. We all understand. This is a horrible illness that makes you feel isolated.We really keep each other going at times. Everyone vents ocassionally. It's good for the Soul !!!
Thanks Ladies, I feel a little better emotionally today. I was just overly tired and frustrated with this whole thing. I am going to see the doc in Hershey and hope for the best. My biggest issue is I get put to much "hope" into every appt. Then I have that "letdown" feeling when they don't find anything. I can't quit now, I am not going to give up! A friend of mine keeps reminding me that this is happening for a reason. Not sure what it is, but hell or high water....I will come out of this on top! Have a great day!
I am 7 mos out of surgery and I feel your pain, all of it. Still having issues with headaches, memory, neck pain, brain fog, blah blah blah. And yes, my NS too has said he cannot help me any longer, I had an "optimal" surgical outcome and all that jazz. Frustrating. My NL just sees me every 3 months to play medication roulette, says it's all migraines, the decompression surgery was just to halt any progression of neuro symptoms and the migraines are the real culprit, not the Chiari. Wow, wonder if my NS, in the same practice, feels stupid for drilling a hole in my head that was apparently just for giggles. I know I found it HILARIOUS. I guess the duraplasty and laminectomy were just for practice too. Mighty nice of 'em.
Huh, sorry, guess I needed to vent to someone in the same boat too. ;) I knew going in that I was trying to improve my quality of life and it was the only treatment option other than drugs to treat symptoms as they cropped up. I guess I'm just a little more disappointed than I thought that it didn't have better results. To go through all of it, still feel like garbage, AND get to deal with everyone who knows you saying, WHAT? You're not "fixed"? Sucks.