Hi all,
I had my decompression surgery in Aug '09. Textbook surgery and recovery, could not have been more happy with the results.
My symptoms, pre-surgery:
occipital headaches, pretty much daily
hearing loss
Neck and left arm pain- and a little bit of numbness on left big toe
Numbness in left thumb and forefinger
nystagmus (this is what caused my PCP to order the original MRI)
Other neurological deficits mentioned on my chart that I wasn't aware of at the time, I can't recall specifics-- pretty much coordination issues.
Fatigue, relentless fatigue
After the surgery, the headaches were gone. Awesome! After recovering from the surgery, I still was left with the hearing loss and some residual numbness in my hand but I was told this was highly possible. Otherwise, excellent recovery and results The headaches were the main goal, I knew this going in - and that some of the other issues were unfortunately permanent.
About 6 months ago I got another Chiari headache. OMG, it's such a familiar feeling it made my stomach upset when it happened because I knew it was 'that kind' of headache. (I've had other types of headaches, for me the Chiari ones are distinctly different than headaches from hay fever or hangover or not getting enough sleep) This was just like going back in time, really upsetting.
But I didn't panic and rush back to the NS because I figured 'let's just wait and see'. Well, it's been getting worse. I'm getting them just the same way as before (especially caused or worsened by coughing, sneezing, lifting or any other straining) and I also have a new symptom that I didn't have before and that is occasional difficulty in swallowing. It really freaked me out the first time it happened because I thought I wasn't going to be able to get the food down, what a scary feeling. It only happens occasionally, but definitely not a pleasant experience.
So, I called the NS office and am scheduled for Feb 5, but I am just wondering what other people have experienced. I know it could be unrelated, but I feel like I'm going backward.
before the surgery, ignorance was bliss because I went into it feeling like I could handle it, no problem. Now, I know what it's like and I don't want another brain surgery lol. I know the recovery, even an uncomplicated recovery like mine was really a lot. Took a year and a half for my darned hair to grown back, lol!
So, just wanting some advice, experiences, words of wisdom, whatever from people who are post surgery-- have you experienced the headaches again or other symptoms and what was the outcome? Thanks for reading my mini novel!
Wendy
(46 yo, Pittsburgh PA)