Hi everyone,
I've read a lot on this site (thank you all) but haven't posted much so I wanted to tell my story. I was diagnosed in October, met with the first NS in November, got a second opinion the week of Thanksgiving and had the decompression surgery on 12/18/13. I will be honest, I was miserable until the 26th, I was one of the unlucky 35% who have massive nausea and flu like symptoms. But on the 26th after a nap, I ate and felt like a new person (and I got to check off lose 10 lbs from my New Year's resolution list right away). I guess my CSF had finally regulated or whatever. Everything went really well after that, but one thing I haven't seen discussed much on these message boards is physical therapy. My doc prescribed it to get my range of motion back in my neck. It worked and I have full range of motion, but an hour after my last visit (I refused to go back), I noticed a squishy lump on the back of my head, called and saw my NS and sure enough, I've got CSF pooling in my patch. I'm convinced it was caused by my PT - anyone else have this issue? We're monitoring it and my next CT scan and NS visit is May 15th. My NS has done 250+ chiari surgeries and never had to go in and fix a leak so I'm really hopeful it will resolve itself and I'm not his first one. I do want to tell anyone waiting for the surgery that I don't regret it a bit. I'm 100% symptom free, no headaches, got my hearing back, was able to reduce my eyeglasses perscription, can swallow and don't snore anymore! I also had full body tremors before the surgery and pins and needles all of the time both of which haven't happened since the surgery. As far as activities, I'm back almost 100%. I just got back from a 10 day trip to Europe to celebrate my recovery and my birthday and walked all over there and was fine. My workplace is having a get fit challenge right now and gave us all pedometers to measure our steps everyday. In Europe I was averaging 13000 per day and hit 20000 one day and felt fine the whole time I was there. So I know a lot of people have a lot of post operative problems, but for me after the vomiting stopped it's been relatively easy, so please hold out hope that it will be for you too. I think having the right doctor and taking it really easy at first are key. Mine NS is not specifically a chiari specialist, but does have a lot of experience. I decided to stay local (Richmond VA) versus go to a specialist center because I wanted to be close for the follow up and you are really entering a long term relationship with your doc. I passed on a more famous one at UVA because he spent about 15 minutes with me during my appointment whereas the first NS I met with spent almost an hour with me showing me my pictures and explaining in detail what was going on and why I needed the surgery sooner rather than later. My symptoms had escalated rapidly in the last six months and I was getting new ones every 2 weeks or so. Keep your fingers crossed that I don't have to get my leak fixed and that it resolved itself. It doesn't really bother me other than the lump (if it's full) or squishy spot (if it's drained) feels weird and I have dizziness at times, mostly when I get up first thing in the morning or if I've been lying down for a while. I also have a cool new party trick that if I tap on the lump my leg jumps like a Doc's reflext test. Anyone else had that? Thanks to all for sharing your knowledge and stories.