So, I had never heard of Chiari 1 until a friend on FB posted her post-op pics last summer. I was being seen at that time for "a constellation of symptoms" being shuffled from one Dr. to the next, never imagined that maybe in a few months I'd be facing the same surgery that caused that terrible post-op picture. I am about to go to Ohio to meet my surgeon next week, cannot wait to get this crazy thing under control, hoping that the surgery can be scheduled ASAP and I am terrified of it all at the same time. I went to the Dr. 4 years ago and said, "OK, so I have this Buzzing in the back of my head, it really kinda hurts-ish and my hands go numb too." He said, with a face that could have told me I was insane, "Well, That's not really normal. Maybe we should see someone about that, an ENT?" it's taken four years to get my diagnosis. and a few Doctors, I can't say how relieved I was to see that MRI with the Diagnosis, Chiari 1, so, I am not crazy. Haha, did anyone else feel like that? Just relieved that there was validation to all their pain and seemingly nonsensical symptoms? I am terrified about the next couple months but also so excited. anyhow, would like to talk with others who have been trough it, I wonder if anyone else has the "fire feet" as I call them the burning that feels like the skin is burning off the bottom of the feet and have you found anything that helps with that pain? Also, my eyelid twitches uncontrollably and has for about four months, no one can see it but I feel it. Its one of those small things that makes me crazy, does anyone else have this and if you do how do you deal with it? Maybe it's not even related to the chiari, but maybe it is, lol. Only two of a bunch of crazy symptoms but I have found ways to deal with most of the rest of them....anyhow nice to be here, I've loved meeting many of you already, as I've read many of the threads here :)
Gretch, I wanted to welcome you again more formally. Terrific you’ve already begun reading threads and familiarizing yourself with your new community.
You may also do a search for key words like “burning foot pain”, etc. or post a separate discussion on questions related to your symptoms. Hopefully others will share experiences also. Feel free to check out the Chiari Info tab, too, if you haven’t yet- lots of valuable information.
Hugs,
Laurie
Thank you, again, Laurie for the warm welcome! :) will do.
You are not crazy. I was the same way. 8 years ago I couldn't swallow. Everything was going into my lungs and I went to every local doctor and they found nothing. It's been a year since my swallowing came back, along with me losing my balance, and not being able to drive without closing one eye. I don't get headaches though, thank God. finally my lung doctor referred me to the city and that day, after a brain MRI, i was diagnosed. me like you, I think people thought I was crazy with the exception of my boss and husband who saw me suffer daily. I am having surgery November 16 and am pertified. But I hope the outcome is good and I get all my vison, balance and swallowing issues back. I am very grateful and have lots of support at work, but joined this forum to see how other people have dealt with the diagnoses. Hope all goes well.
I having surgery on Friday the 13th. It's all going so fast and I am so scared terrified really, there have been so many tears, and so much worry I try to swallow no no one else has to deal with my issues, you must feel similarly with your date so close too! We'll be healing buddies! :) best of luck to you. Right now every day is worse than the one before, so I am sure (and my surgeon is sure) that it will be much better once healing begins after the surgery. Let's get these dumb symptoms out of here! <3 :)
tomygirl said:
You are not crazy. I was the same way. 8 years ago I couldn't swallow. Everything was going into my lungs and I went to every local doctor and they found nothing. It's been a year since my swallowing came back, along with me losing my balance, and not being able to drive without closing one eye. I don't get headaches though, thank God. finally my lung doctor referred me to the city and that day, after a brain MRI, i was diagnosed. me like you, I think people thought I was crazy with the exception of my boss and husband who saw me suffer daily. I am having surgery November 16 and am pertified. But I hope the outcome is good and I get all my vison, balance and swallowing issues back. I am very grateful and have lots of support at work, but joined this forum to see how other people have dealt with the diagnoses. Hope all goes well.