Do you know any Chiari Specialists in Alabama other than Mobile?

[Marine_Corp_Brat]

Are there any specialists in Alabama closer than the one in Mobile? I have lived with Chiari all my life, was finally dx 15 yrs ago when the dr said well you have a brain defect. Your brain is to big for your skull but your fine go home. I have dealt with severe vertigo and a host of other debilitating chiari symptoms..I finally asked my gp what the name of my "brain defect" was and he told me Chiari and started asking me what the neurologist has been doing to treat all this time since he hadn't been getting any reports..I told him and he was MAD!! I thought he knew, he thought I had been being closely monitored all this time, needless to say he ordered an MRI to see if there had been any change. I have most of the symptoms of Chiari and when I left the gp's office that day and looked it up on the internet it was amazing that all this time symptoms I have had all my life and couldn't explain why, or they were dismissed by doctors thinking I was just a hypochondriac I'm sure... I started crying because suddenly I had an explanation for why I feel like I do! That may not make sense to some people but when you keep being told it's nothing or well we don't know why and suddenly you have an answer it was such a relief because I wasn't losing my mind! My gp sent me to another Neurologist (this one even after seeing the more than 9mm herniation) decided that my vertigo was simple dizziness and had to be an inner ear disorder. He put me through a vestibular test and surprise no inner ear problems so now we have to try robinul (a stomach ulcer medication) to see if that helps with the vertigo. It was so bad today that I almost fell down and he had to catch me but he wanted to try increasing the medication and see if that helps. I wrote down 6 pages front and back of the symptoms I have and left him copies so he would be able to see what symptoms I have and I don't know, other then when he took them from me that he actually looked at them again. And now I am at least starting on the road to having all other possibilities ruled out so that we can say once and for all that yes it is the more than 9mm herniation causing the problem! Please If you know of any doctors other than Mobile or if you hear of any please let me know!

[Pjchapman]

Hello anyone from Mobile has suggested doctors my son 12yrs old has 11mm  herniation Chiari malformation 1 please reply with any experience good/ bad regarding Doc in the area

[selmaS]

  Oh so you had a CINE MRI done.....well...have testing for ALL related conditions....many of the related conditions can be responsible for the symptoms you are having.....

Do you have a true Chiari specialist?

  I am doing well thanks for asking....I had my decompression surgery 5.5 yrs ago and I am seeing benefits with each passing yr....

[Bamagirl40]

I just got confirmation that there is no obstruction of CSF flow.  Now I don't know what to do?

[Bamagirl40]

Oh. Ok, thank you.  How are you doing?  

My black out episodes have become worse.  My herniation is only 4 mm and although surgery is a scary issue, I don't see any other way out.  Will they do surgery even if it is a small herniation and CSF flow is ok?  My symptoms are debilitating and unbearable!!!!

[selmaS]

  The member you are addressing your question to has not posted in some time....you may want to send a PM (private message) as it will prompt a  e-mail alerting her someone is trying to make contact.

[Bamagirl40]

Well about 17 miles north west!!!

[Bamagirl40]

Hello, I also live in Mobile Al.  What a small world.  Did you ever find out where to go?

[The_Marine_Corp_Brat]

BTW I have two profiles. forgot about the first one till I re-registered. Talk about brain fog!

[The_Marine_Corp_Brat]

I am so grateful for your comment and will be seeking a second, third and fourth if need be as soon as I can. Had injections in my head today for migraines. The NL that I see is trying to figure out which HAare migraines, basilar migraines, and which are Chiari HA. OMG it hurt!!! Still does! I think it's the whole, this can't be Chiari...it has to be something else. When I am feeling better I will post my symptoms. Warning though there are Many!!!

[Sexybare]

you have def got the chiari runaround, which so many of us deal with. i dealt with it for 8 years. drs telling me i have anxiety, panic attacks, the famous theres nothing wrong with you line. i am traveling from michigan to colorado for my second surgery with a specialist. first surgery was done by reg ns whom has only done about 20 surgeries. now here i go again for hopefully my last surgery with true chiari specialist who is 20 hours away frrom me...get other opinions from a specialist...just my opinion....Dana

[Marine_Corp_Brat]

What!?!?! I don't live in Mobile I live a little further up but the doctor they have listed for Mobile is Alabama- Dr. Anthony Martino Mobile,Alabama
Please tell me this isn't who you saw!

[cheerio767]

Hi.  I live in Mobile and was diagnosed in 2000 at 33.  Their are no chiari specialists here so curious as to whom you saw.  The one neurosurgeon at the *University hospital network does not treat it and said to come back when paralyzed.  

[Marine_Corp_Brat]

The neurologist said he definitely saw there was quite a bit of pressure in the way it was pushing on my spine. said he wanted to do an MRI at least once a year if not more, after we get some of these other symptoms under control. I thought the robinul was helping and will give the increase in meds a little longer but it seems to be one of those longer episodes with lots of mini-episodes if you know what I mean. I will check the list! Thank-you! I know I will have to travel it's hard when I can't travel long distances easily..but good help will be well worth it! Thanks for the extra information, like I said have had the dx for years just in the last year had a name for it.

[selmaS]

Hi and welcome to the Chiari forum.

First let ma start by saying it is not the 9mm herniation causing ur issues, it is most likely a CSF obstruction....most times it is the herniation that causes the obstruction...but, it is not the length, but the shape and width of the obstruction that is more dis-concerning.

U need a CINE MRI- a Flow study to see if u have a CSF obstruction or overcrowding....

And once u have a chiari dx, u need a true chiari specialist...most of us do need to travel to get to one, u may not find one close to home.....look at the list of Drs we have here on MedHelp...know u have to research all the drs and this is not meant as a referral.

http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

  "selma"