So I officially get to join the group.

[tkilburn]

So I don't know if you all remember or not. But I posted a while ago about having all these symptoms and felt like it could be chiari related. Well I went to the NL about a month ago. He ordered me to have an MRI of my head, MRI with contrast, MRI of my neck and an MRI of my lower back. Then also I had to have a nerve study done. Well surprising I was able to do the all the MRI the very next weekend after seeing the NL. I thought that was kind of odd that they got me in the quick but I wasn't complaining. I did the nerve study on the 28th of Oct. and the doc that did it tried to tell me that I have a pinched nerve in my neck and sleep apnea. I'm not sure how he came to the conclusion of sleep apnea from doing a nerve study but he did. I was really rather rude with the doc and told him I didn't think that was what was causing all my problems and I will just wait and see what my NL has to say about it all. (Come to find out later he was doing a clinical research study on sleep apnea. So no wonder he said I had it.) So anyways I wasn't supposed to meet back with the NL until the 18th of this month but they called me last Thursday and said the doc wanted to see me on Friday. I was like uh ok. So I went to go see him at 1:00 on Friday and just knew that this probably wasn't going to be good. Luckily I didn't have to wait long. He came right in and put up my MRI films and I saw it right away. I had done so much research on Chiari that I noticed it right away. But I just stood there listening to what he had to say and waited for him to get to the bad part. And finally he did. He told me that I had a Chiari Type 1. And that my tonsils extend down 9mm. So I have officially been diagnosed with Chiari now. Its weird because I am sad and glad at the same time. I am sad because I really didn't want to have to deal with this problem but glad that I now have a cause for all my symptoms and know that I am not going crazy. He is scheduling me an appointment with a neurosurgeon to see if they feel if surgery will help or would be an option right now. He seems to think so but he said he wasn't a surgeon so he really couldn't say for sure. He did start me on Topamax, a muscle relaxer, and a new kind of headache pain medicine. I forgot the name of it right now. So we shall see where this road takes me.

I will have to say I was very excited to have a doc that dxed this very quickly. He was a very attention detailed doctor. I am not sure if he is a chiari specialist or not but he knew exactly what to look for and did blow it off. So if anyone is in the midwest around Kansas I would highly recommend him if you are looking for someone. His name is Dr. Dana Winegarner.

Well that's about it for now. Just wanted to let you know that I am now here for the long haul. Hope to get to know some of you guys better as I travel down the road.

[selmaS]

No..just the typical relief of validation which for us is difficult to find....
No worries u r welcome to post even if u found u didn't have chiari....our welcome to u during ur search was that a welcome : )

What u expressed is what we all have at this point in the quest to know what is wrong after so many drs made us feel we were going nutz or making things up......

U r not alone in being glad to know there is a reason, and we all know u r not happy to have chiari as when we welcome a new member, we r happy to include them, but not happy bcuz we know they or a loved one has chiari.

Try to relax and start looking for a chiari dr to help u on to ur next step

"selma"

[tkilburn]

I hope I didn't come off sounding happy or whatever about having Chiari because that is so not the case. I just have been following this group for a while now not really posting because I didn't really know if I should since I hadn't been diagnosed and didn't want to be one of those peopel that is well I have this and that and this and that could it be Chiari?? I want you all to know that this is eating away at me and I have basically been in a trance since Friday. I didn't do anything all weekend except sit on the couch. My husband drug me to the mall yesterday and made me walk around and I just wasn't into it. My head is just in a fog trying to coupe with all of this. Anyways I just was rereading what I posted and thought it might have come off a little strange. I really don't mean for it too. This is not something I am happy about at all except for knowing that I am not losing my mind.

[selmaS]

Hi and welcome officially to the Chiari forum...I understand ur mixed emotions get the validation yes u have something wrong and oh geeze it is chiari....

I am not happy to have to welcome u , but know we all r here for u  for support or in any way we can.

Do keep that NL for follow up is u do have surgery as u will need a good one to take care of u post op.

ANd do be sure u get to a chiari specialist and not just some NS as there is a big difference.

"selma"