Wow...

[LesMRod]

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.

[selmaS]

  That link is to an older thread for Drs and is not updated. I can give you a list per state , let me know which states and I will post below for you.

Being an older thread it may have Drs names we no longer would suggest you research or may have some on that have retired.

[debm478]

Thank You Selma,

I didn't realize you were on this thread.. I was reading different post's and got excited when I read a Member here in Boise found a good Dr.
I tried Google and only came up with the Neuro Surgeon who wouldn't take me!
I apologise , I haven't found all the resources on this site and didn't know about the list of Doctor's or I'd have started there!
I feel like I'm racing against the clock to be seen before I decline more.
I read about the White Matter Lesions they found , it lead me to the disease's that cause them.  I have so many symptoms that correlate with MS it was unnerving, but I also know there are several disorders that accompany Chiari that have similar symptoms.
Once again thank you for taking the time to point me in the right direction!
Have a wonderful day! We're supposed to hit 100 today and 100+ tomorrow!
Debbie

[selmaS]

  The member in this thread you are addressing may no longer be an active member....this is an older thread.

You may try to PM ( private message) them in hopes they answer.

[debm478]

Hi,
I googled Chiari Specialist in Boise and your post came up!
I'm fairly new to the area and I can't get anyone to listen that I'm having Neuro issues!
I even spent a week in St Als they did all kinds of heart tests, but when I asked for a Neuro consult it didn't happen? Once the car did tests came back and my blood pressure and heart rate evened out i was sent home with no answers?
I've been to the Internal Med office at least 3 times in the last 3 wks. The last appointment on Monday, I requested an MRI and turned down!! He proceeded to ask if I'd seen a Psychiatrist?If I'd Thought about Therapy and P.T.? He then began doing the Fibro test?? He said it wasn't Chiari,but thought it was Fibro? I explained before my diagnosis they thought it could be, but once I was diagnosed and treated for Chiari I was told it was Chiari not Fibro!
I felt lousy and vVery frustrated the tears began to roll down my cheeks! I was embarrassed and that's when he said i was depressed!!

I'm going on a month now, I'm housebound, I'm in a lot of pain, h
Severe headache everyday all day, heart palpitations and drenching cold sweat's, ringing in my ears, numbness and tingling, my sleep pattern has changed I can't stay asleep to save my life! My head is even tender to touch and has a burning pain and pressure in the back to the right of my decompression!!
I'm 90% sure I have EDS also!
I'm so weak and tired I can't get much done and Ive lost all the muscle tone I worked hard to build up the last yr!

I was doing incredible before the onset the Weekend of Mother's day! I was making new friends here, I had been taking dance lessons for the time  in yrs and even started dating!
I moved from Steamboat Springs CO, one I moved out of the high Altitude, harsh cold weather I began to feel better and became more active!

Now I'm isolated, the friends I'd started to make have moved on and my Son that lives here doesn't get it! I've sent videos,articles and brochures but he thinks I'm not pushing myself and I need to be stronger and just get things done??
I need a good Chiari Specialist and also Pain management! I had a great relationship with my Pain Dr in CO. He didn't want my treatment plan to change because it took a long time to get it right! The PA they have me seeing here has never done a physical exam, consulted with the Dr in CO and is taking me off the meds he put me on, but isn't replacing them with another Ed or treatment!!
I'm reaching the end of my rope! I'm trying to stay positive and keep myself distracted but I'm hurting and frustrated!

I'm sorry for the long message, but I'd be forever grateful for any information you can share with me about your Chiari Specialist, other DR's etc! I tried to see if there were any support groups here but no luck..

Thank You,Debbie

[selmaS]

  Hi and welcome to the Chiari forum.

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.

http://www.medhelp.org/health_pages/list?cid=186

[Mrs_Cerny]

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

[KiaSister1]

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.

[Stephiec79]

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!!!
Good luck!!

[youngwife]

((((HUGS))))  Is it possible to find out where that doctor has gone now??

I pray you are able to find a good Chiari doctor, and get some relief.

Blessings,


Rebecca

[LesMRod]

Well crap.. the one doc at OHSU that was listed previously is no longer there. Ugh...

[LesMRod]

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.

[ssparklers26]

Hey there just wanted to let you know I too live in Oregon. I was diagnosed in Dec of 2010 and I'm still trying to find a good doc. Where are you at in Oregon. I'm in Salem

[meshell_32]

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!!

[selmaS]

  Hi and welcome to the Chiari forum.

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-
http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483

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.

"selma"

[pamk5]

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.  

I hope this helps.  

Pam