I see that there are a few different regional groups for those of us with this, but did not see one for Oregon. Which brings me to the question: Am I the only Oregonian here? I didn't think so, but wanted to double check.
There is a real great group in Seattle with awesome members. http://www.csfinfo.org/node/206 I went to their meeting last month and a lot of people drive from all over including Oregon. Hope this helps
I live in Vancouver,WA. So, I’m only about 5-10 minutes outside of Portland, OR. Like Kurt said, the closest regional group is up in the Seattle area…I think it’s in Edmonds, WA. I’ve thought about taking the trip up there one of these days to attend a meeting. Like you, I wish there was something closer though. I know there are other Oregonians on here…I’ve talked to a few of them:)
Oregonian here! :)
YAY! Thanks guys! Hey, Sparkyschick, I'm in Tualatin. :) Where are you going for your treatment?
I'm in Scappoose. I was diagnosed 4 years ago with a 10MM CM and a syrinx and was sent to 2 NS's at the time (Dr. O'Neill and Dr. Chen) and both suggested the "wait and see" approach. I forget what practices they were from. My headaches were under control with medication. I literally just started seeing a new neurologist, Dr. Leonard from St. Vincents due to headaches of increasing intensity and frequency in the last year and particularly in the last 3 months. He recommended a CSF MRI which I had last week, and according to his assistant's phone call it came back showing my spinal fluid "flowing freely." I have a follow up appointment May 15th where we will "discuss treatment options." So, I currently do not have a NS that I am seeing but have a feeling I may go down that road soon...
Ah. Okay. I'm seeing Dr. Phipps from Oregon Neurology. He's definitely willing to work with me about treatments for this (I have a 10mm CM as well, but no syrinx), but we're waiting on my appointment over at OHSU for the NS consult.
Wishing the best for you!
Good luck to you as well, please let me know how your appointment with the NS goes?
Thanks guys! I guess I'm just eager to meet more people with this and sit around and chit chat. I'm seeing Dr. Dogan over at OHSU, and was told by the very nice staff there that he's the one that deals with the majority of their Chiari patients there. I'm a little nervous, but I know this is the next step to hopefully being better and having my life back!:)