Chiari Specialists?

[afatula608]

Hello I was diagnosed with Chiari Malformation 1 a few months ago with 4-5 mm herniation below the foramen magnum. My symptoms are as following: daily debilitating migraines since july-august 2015, insomnia, anorexia, nausea, vomitting, chronic fatigue, neck pain, occipital pressure and pain, thoracic back pinching/radiation bolts, upper back and shoulder pain, double vision, blurry vision, light and noise sensitive, ringing in ears, random numbness on right side of body, and general feeling of head "heaviness" and swelling. My neurologist is treating me with a combination of 400 mg of lamactil, magnesium, daily vitamin, vitamin D, zofran, maxalt (only can take 3 a week/ 2 in 24 hrs) and melatonin as needed, PCP has me on effexor 75 mg, buspar 20 mg, singulair, albuterol inhaler, and sleep specialist has me on trazadone 75 mg. With a combination of all of these medicines I have found absolutely no relief. Some days I get by with the pain, and other days are horrible. On my worst days they recommend going to the ER for the migraine cocktail. Well I've had the mixture of toridol and benedryl plus fulids and I leave with the migraine. My Neurologist keeps saying these are refactory migraines that have nothing to do with my chiari as it is congenial. Everything I've researched says that the chiari symptoms will start to present itself mid 20s to 30s or after trauma. I am 25 and had a pretty bad birth experience in 2015 with preeclampsia and placenta accreta and my baby being born 6 weeks early. What I'm wondering is are there any specialists in or around columbus oh? What medicines are you taking that actually combat the pain? At my next appointment he said if nothing has changed he is referring me to a neurosurgeon and this won't happen until February next year.

[selmaS]

  Many of us have asked the same thing....but since we have had it since birth, I believe we have always had symptoms but considered them "normal feelings and not symptoms since we always had them" And I believe we adapted to how we would feel after certain activities and would either avoid them or not do them as often or have a dislike for the activity and not really question it as a symptom of something. Why you are having symptoms now that you took notice....no idea....could be a recent cold or flu, stress...a cough or a ride on a bumpy road....o way to know for sure.

[selmaS]

  Hi and welcome to the Chiari forum.

First let me address the comment that "the chiari symptoms will start to present itself mid 20"s to 30"s or after trauma"...that statement I saw numerous times as well in my research and I feel it to be bogus. My symptoms have been as long as I can remember and look at all the small children suffering....I do believe the statement is outdated and on old research Drs did when they first were able to see the malformation with the advent of the MRI....there also was not a lot of info shared/taught in medical schools for Drs to be equipped to help us or for them to even know how the symptoms can and do affect us on a daily basis and long before age 20 and sometimes there is no trauma with onset of symptoms worsening.

We do have a list of Drs for Ohio.....this list is not a referral nor an endorsement for those listed on it.....it is just a list compiled by members here of Drs they have been to, treated by and liked...you need to use the list to research Drs to find the right one for you. Be advised you may have to travel.

OHIO

Dr. Lisa Lystad-Opthalmologist
Cleveland Clinic
9500 Euclid Ave
Cleveland OH 44195

Dr. John M. Tew, Jr.
Mayfield Clinic
Unv Medical Arts Bldg.
222 Piedmont Ave, Suite 3100
Cincinnati, OH 45219
[phone]

[afatula608]

Thank you for the doctor information. I just don't understand I guess why doctors do not have current information. If I've had this my whole life why is it just finally presenting itself?