a specialist in Indiana???

[dpulum]

I was just diagnosed with CM three weeks ago.  I'd been having pretty serious visual symptoms, severe blurriness, major changes in my vision, temporary periods of blindness, so I went to the neurologist.  She initially thought they were silent migraines and put me on Topamax 50mg/day.  The visual problems have gotten a lot better, but I am now having major dizziness, that makes me fall over.  The neurologist initially ordered a MRI due to my sister & nephew having CM, it took 2 months to get an appointment to get the results, but she ended up telling me that I have CM and sent me to a neurosurgeon.  The tonsils are hanging down 12-13mm, she acted like that was small, but the neurosurgeon said that it's big.  My concern is that he didn't seem to be up to date at all on his info about CM, he told me that my visual problems are not linked to the CM, but when I read the websites, visual problems and blindness are listed as symptoms.  My sister had her surgery done in Seattle, so I can't use her doctor, I live in Indianapolis, is anyone familiar with a good neurosurgeon in Indiana or Illinois who might be able to help me, I'm feeling pretty confused.

[selmaS]

  Hi and welcome to the Chiari forum.

The problem is not much is taught in med school about chiari and what is, leaves most Drs with that attitude.....
U need a true chiari specialist, there r not many of them out there, as they do their own research and develop new treatment courses.

We do have a list of NS's that were the members Drs, not all r true chiari specialists, but have successfully treated it.We add the names after the member has had surgery and like the dr.

Use the list to research Drs it is NOT a referral.

Next u need more testing to see how ur chiari is affecting ur overall health....the size of the herniation is not as important as the possible obstruction of CSF flow, so a CINE MRI should be done, u should be checked for related conditions like ICP, tethered cord, sleep apnea,disk issues, ehlers-danlos.

This is all important to know b4 u consider surgery .

[anietthc]

I have a vast variety of symptoms from Chiari 1.  Mine is 14mm.  I went to see a neurosurgeon yesterday and he acted like I was a hypochondriac and I was wasting his time.  I have worsening double vision in one eye and have constant pressure in my head.  My headaches are getting worse by the day.  What do I do next?  Where do I turn?

[dpulum]

Thanks for the help.  I never go to the doctor and have believed that my symptoms were from hypoglycemia since that's what the doctors told me when this all started when I was in high school 20 years ago. I have contacted Dr. Ellenbogen, who is a wonderful Chiari specialist in the Seattle area, he treated my sister and nephew, he is referring me to a specialist in the Chicago area, although I honestly feel a bit silly about bothering someone with this, most of the time I feel fine, it's just the random visual weirdness that is increasingly becoming a problem.  I appreciate the information and support.  Thank you, I will ask for a MRI of my spine, my sister & nephew both had syrinx issues when they had their surgeries, so I should probably ask them to check that out.

[beachlover3897]

I am having similar issues with my vision...no blindness but definitely the changes are significant for me.  I am also dealing with the dizziness (doctors are saying it is vertigo?).  I had an MRI of my brain and have an 8mm herniation, which the neurosurgeon I saw doesn't seem to think this is significant or related to the CM.  I don't agree because no one can explain the reason why I feel like this.  All the ENT tests have come back normal and the ENT doc "thinks" it is a neck issue and the Neurosurgeon "thinks" it is vestibular (which has already been ruled out due to the tests).  I am frustrated just like you because i feel like the doctors just don't know and don't seem to be concerned.

I am calling my insurance company today to see if they will allow me to visit with out of network providers or a doctor of my choice due to the fact that this is a rare condition (thanks to those who have suggested this course of action)  I am considering John Hopkins in Maryland or UMass in Massachusettes.  Both hospitals report that they "specialize" in Chiari Malformation and related conditions.  

[Shane99]

Welcome to the forums. Sorry you have to be here, but we try to be informative and supportive.

You most definitely need a Chiari Specialist. We have a thread with Doctors that are specialists, or at least that members are comfortable with. If you don't see any on there, I can see about checking around, but as I life in Nashville, I don't personally know any around there. I'm pretty sure Chicago does, but I can't think of a name right off.

13mm is a pretty big herniation - anything over 5mm is considered "significant" and at around 8mm it can start causing serious issues like syrinx. You'll need an MRI of your spine to check for CSF flow problems.