chiari 0 specialists?

[Mowgrin]

Hi, I am new to this forum and grateful that I have found this community!  I have been suffering from debilitating headaches, nausea, vomiting, confusion, trouble putting sentences together, balance issues, pain/burning in the neck and back of head hurts so bad I cannot lay directly on a pillow.  

I had a brain MRI and the radiologists that reviewed my brain MRI noted "tonsil protrusion" and that he felt it was is the normal range with no measurement.  I called and asked him to measure the tonsil herniation and it was 2.8 mm.  

I am trying to find a Chiari NS that specializes and treats Chiari 0 in Michigan or Colorado.  I have been referred to Dr. Oro by my PCP. Although he sounds great overall, I have read some blogs that indicate he doesn't do surgery for Chiari 0 (which is what I believe I have but not 100% certain).  Does anyone know who the NS are that actually treat/perform surgery on Chiari 0?  I am in so much pain and just need help as meds don't really work.  Chuck is calling Monday to schedule but after reading, it sounds like he will just ask me to pay the $75 and send my discs.  If Dr. Oro can help me, great.  If not, I would like to be prepared and find a NS specializing in Chiari 0.

If anyone out there has any comments on my MRI pictures please let me know as I would really appreciate any feedback:-).  Don't worry, I know none of us can diagnose but know that all of you are experts based on your experiences and that any suggestions you make are only each of our opinions:-).  I would like to hear your opinions very much.  

Thank you so much for any feedback as I am desperate to find a NS that can actually help!

[Kayera]

Im so glad to hear that I made a difference in somebodys day!  Oh btw, I love Colorado!!  My friend moved there 3 yrs ago as her job kind of forced her there and I visited her. Love it. Its a lot like Oregon. She lives in aurora.

[Mowgrin]

This is wonderful information:-).  You really made my month as I just couldn't believe the posterior cranial fossa space wasn't more of an issue with ALL Chiari specialists.  I am going o contact this Doctor in Vegas for certain.  

Thank you for your kindness!

[Kayera]

No problem! When I saw your post, I had to share my story. :-)
Its funny, my first post had a little more detail and I mentioned that Dr. Seiff has the radiologist measure quite a few things and Dr. Seiff did tell me that I have hypo plastic posterior fossa. He commented on the 7mm, when I asked if it was still 3mm. He said no its 7mm, I dont think its 7mm but Im more concerned with the other measurements. That being the poserior fossa. I saw you are in Colorado and thought you would like Vegas. :-)
He is 4 miles off the strip. Here is his info: The Spine & Brain Institute

3006 S. Maryland Pkwy Ste: 765

Las Vegas, NV 89109

702-948-8788 ext: 813-  this is Shannon's extension. I believe she maybe out on leave still. You might want to push the # for "if your a doctor push.." because its hard to get thru.

Fax [phone]

You can look it up online, but he moved and most sites give his old info and they will not help you there.

The best of luck to you!

[Mowgrin]

Wow!  I am sooo happy you just shared your story with me! I can't believe all that we have to go through to get some help!  I did have a friend, who reads MRIs measure my "space" in posteria cranial fossa and the measurements were very much Chiari-like but still ccouldnt get Dr. oro to see me.  WI center sounds like they will see me but Vegas is closer as I am in Colorado.  Thank you so much again for letting me know about the help you got in Vegas.  I hope you are doing better:-).
Take care!

[selmaS]

  Hi and welcome to the Chiari forum,

U should be getting more testing to see if u have other related issues, too many look just at the herniation and that is not the only issue that can cause these symptoms we all have. Make sure they test for CSF flow, CINE MRI, and MRI of thoracic and lumbar MRI.....

U may have over crowding or some other issue that is more of concern then how long ur tonsils r....Use the Drs list to check out diff Chiari Drs and u may have to travel to get to one as they r not always easy to find.

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

This list is not a referral , but a means to help u research Drs that other members of this forum have been to and liked.

[Kayera]

I just sent a long message to you and I wasn’t logged in. So here it is again, shorter version.
I was in the same boat as you. 3mm. I sent my MRI everywhere:
Dr. Heffez in Wi- They got back to me and said he would see me. No Other information given.
Dr. Ellen something in Washington- Said he would not see me
Dr Frim in Chicago- Couldn’t open it.
Dr. Slavin in Chicago- Total waste of time, idiot said I don’t even have low lying tonsils.
Dr. Oro-  Have to have 5mm or more.
I went to Dr. Seiff in Las Vegas, he is a Chiari Specialist and has worked with Dr. Rosner.
He had me do a new MRI and Cine. They took more measurements with this MRI then the one I had done in my home town.  It measured 7mm now. Dr. Seiff didn’t think it was quite 7mm but dx me with Chiari 1.  He see’s patients for Chiari 1 and Chiari ZERO. The MRI they do, is specifically for both, that is why they do so many measurements, as they believe in Chiari Zero.
Since I now have the Chiari dx. I’m sending my images to Dr. Oro for a second opinion. I believe in Dr. Seiff, but feel better with 2 or even 3 opinions.

Good luck!

[Mowgrin]

Thank you so much!  It has been impossible to find specialists to see you if tonsils less than 5 mm.  I appreciate all of the feedback so much:-) take care!

[Marybz]

Dr. Heffez in WI will view your mris for no charge.  Look up his website

[Sexybare]

Dr oro is my ns and I was also told in the beginning if its not 5mm or more he wouldn't see me. Didn't have a problem with that for mine is 14mm. And recurring for I had a previous decompression with dif ns last year. So do make sure they know that info. He is a fabulous ns and just may see ya anyhow. Keep us updated please. Hope you find answers. :)

[bagheesmom]

   I saw Dr. Oro in June and was told prior to sending my report that if mine was less than 5mm Dr. Oro would not see me, so when you speak with Chuck be sure and ask him about it so you are not wasting your time and money.
   I personally dont know about other specialists just Dr. Oro.
   Im sure others will chime in with some good advice for you though. Best of luck to you!