Ok, so where do we begin? I have a 5mm herniation (the one doc said, "well, it's ONLY 5mm" Yes, I know many of you have much larger herniation's but ANY 'mm' is TOO much)....
I live in Oregon and not sure where to even begin looking for a Chiari specialist... not having much luck even finding a doc to listen and understand all of my symptoms. I am unable to work and have had to give up much quality of life for this.
I have met another on this forum that lives only a few miles from me and her neuro isn't any better.... it's actually depressing...
So, where is the best place to begin this journey? I felt so alone until I found this forum, thank you.
Hello and welcome! We are happy to have you join us but of course sorry that you have had to. First of all the size of the herniation is not important. It is the amount of crowding, CSF blockage that you may have. Also, it seems depending on who reads it, the amount could be more with different views, etc. Mine started at 6 and is now 11mm. Not sure if it grew or if it is the differences.
Obviously, you will need to see a Chiari specialist the depressing feeling that no one gets it is enough reason. Your symptoms need to be validated. You also need to be tested for blockage and other associated conditions. You could ask for a Cine MRI in the meantime so you know how much blockage you may have.
Pam covered much of what I might have said...but I will add the link to our list of Chiari drs for u to use to research to locate a dr...it may not be as close to home as u would like....many of us do have to travel to get to a chiari dr....and I would rather do that then deal with a dr that has no idea how to treat chiari.
The list is not a referral, so please be sure to research the drs to find the dr right 4 u-
To reiterate that the size of the herniation does not matter...mine was 4mm on one side and 6mm on the other and I had surgery bcuz I had a CSF blockage...u need to find out is u have one as well and if u have a syrinx and the possibility for ne other related conditions like tethered cord,DDD, bulging disks, Ehlers-Danlos, and sleep apnea.
I'm know!! I have mine hanging down but I guess not 5mm so the radiologist didnt diagnose it. Now I dont have a choice but to go to a specialist. I am also off work now because my hands cant keep a grip on the steering wheel let alone everything else. Its unreal!! But yes go to specialist!! Good luck keep ur head up!!
So sorry I have taken so long to respond... @ssparklers26 I am just south of Roseburg.
I just came from my Neurologist (ugh) and he is referring my to Oregon Health Sciences University. That is a bit hopeful due to the fact that I saw a doc listed on the list given to me through this forum. I am hopeful and holding my breath at the same time that the answers I need are right around the corner. I want my life back.
Thanks again for all of the support in this forum.
The Chiari process can be a frustrating run around. I was told that I have "low-lying cerebellar tonsils". But because they are only 4-5mm they didn't meet the criteria. My PCP brushed it off, as did 3 other NL. Finally the 4th NL looked at my last MRI and said that she believed that the shape of the tonsils and the symptoms that I have absolutely mean that I have Chiari even though they aren't over 6mm. Even her boss believed it and he diagnoses over 2mm if the evidence is there. The funny thing is that NL 2,3,4,5 all practice at the same place!!! I am now seeing a NS on 3/18! I'm praying that we don't go back to square 1!
Keep your chin up! Don't settle for answer of "no" if you feel that your not getting answers!!!
Wow, I wish you lived closer to me, MY NS says you treat the person and not the MRI, the MRI is a tool to show what is going on, but the person is the one who has the symptoms. I am in Boise, so it is a bit of a journey for you. If you were closer to the Ontario part of Oregon, I would suggest my NS.
Hello KiaSister1, I too am in Boise and have been dealing with every symptom under the sun due to my Arnold Chiari for close to 10 years now. I was finally diagnosed with my malformation 9 months ago after having my daughter. When I went to one of the neurologist at St. Al's, he told me oh yes you have this malformation and an extremely strait neck, but you just have fibromyalgia, basically take these pills and go away. My PCP treats me the same way as well. I was literally about to start looking out of state for help until I saw your post on here. Can I please get the info to your NS. I feel like i'm sinking here, I have days where i can't even pick up or hold my daughter because my arms and hands are so numb. Thank you for any information you provide. sincerely, Mrs. Cerny
The member u r replying to in the above thread has not been active, u can send a PM (private message) which will generate an e-mail that someone is trying to make contact.
U may get more replies by creating a new thread .....and do look at the Health Pages for tips, info and a list of Drs for u to use to research Drs as this list is not meant as a referral nor an endorsement. Keep in mind u may not find a Dr near u....and it will take visiting a few b4 u find the right one for u....educate urself so u will know when u find the right Dr.
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