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Chiari Malformation Community
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Looking for a pediatric neurosurgeon with Chiari specialty in or near Omaha NE?

I have an almost 4 year old daughter who was diagnosed eith Chiari I almost 2 years ago but has recently started showing symptoms. Intense but short headaches occasionally but last week she had a headache all evening and when she woke up from her nap her eyes were bloodshot. She vomitted as soon as I gave her some Ibuprofen. She has woke up 2x vomitting for about an hour with no other symptoms. A day after her last headache (which was her worst yet) she had broken blood vessels all around her eyes and during lunch she was almost done eating when she started crying and yelling. She told my mom she was going to throw up. She never did but every meal since then towards the end of her meal she will become panicked and refuse to eat because she feels like she will throw up. She has a MRI scheduled for tomorrow but reading through the posts I would like to consult with a NS that understands Chiari.
4 Responses
620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

I am so sorry your little one is having such a difficult time.....I can not say I understand as I have not had my child sick with this condition....

May I ask where you are? Your profile does not state where you are located ...I may be able to help with names of Drs for you to research......
1 Comments
Omaha Nebraska
620923 tn?1452915648
COMMUNITY LEADER

  I am sorry we do not have a listing for your state, is there another state you can travel to with your INS? Many of us travel out of state to get to a true Chiari specialist...and you will want one that also deals with pediatrics.

1 Comments
Yes I am willing to travel out of state. When I was looking I could only find doctors in NYC or LA for pediatrics and was hoping you might have some closer options.
620923 tn?1452915648
COMMUNITY LEADER

  I know of one Dr in IL that used to treat only peds but now also treats adults....Dr Frim....here is a listing for that state.

ILLINOIS

Dr. Todd Alexander
Ste 210
1235 North Mulford Rd.
Rockford, IL 61107-0077
(815)397-0077

Dr. Frim
Chicago, IL

Dr. Merle Diamond
Diamond Headache Clinic
Chicago, Illinois

And
MINNESOTA

Dr. Mahmoud Nagib
Neurosurgical Associates
913 East 26th Street
305 Piper Building
Minneapolis, Minnesota 55407
Phone 612-871-7278
Fax 612-863-8531

Dr Nicholas M. Wetjen, M.D.
Mayo - Rochester, MN
Neurosurgery & Pediatric and Adolescent Medicine

Keep in mind you do have to research these Drs as the list is not a referral nor an endorsement of them being a true Chiari specialist....members here have been to, and treated by these Drs and liked them....it does not mean they are right for you or your daughter.

I know you do not want to go far but NY or FL are other options too.
1 Comments
Thank you very much!
12099710 tn?1423423420
American Syringomyelia & Chiari Alliance Project may be a resource to reach out to see if they can point you in the right direction.

Medical professional organizations typically offer physician finder tools where you can search using your zip code. Maybe check out American Board of Neurological Surgery, American Society of Pediatric Neurosurgeons ,  American Academy of Neurology

If you live near a university, their medical center will list neurosurgical faculty and staff.

As mentioned, it is really important to your research and find the right fit for you. Look up reviews, ask around, interview physicians, and visit facilities. Also ask lots of questions!

Best of luck to you and your little one. Hope this is helpful.
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