Help finding the right NS in Illinois for Chiari

[naenae1822]

I need help finding a good NS in Illinois. My Dr isn't helping me much. Since the day he told me I have Chiari Malformation he has pretty much left me wondering. I have suffered severe headaches for 17yrs now and I cant keep living like this. All my symptoms are getting worse. I have two small boys who need their mom and I just want my life back. If anyone knows a good NS in IL please let me know. I have been considering Chicago, IL just dont't really know much about the NS there. Any ideas, experiences, info ect would really be great! Thnak you! Renee'

[sherimom]

Travel is well worth it to get someone good.  I thought we had a good specialist in Milwaukee, he did okay with surgery but follow up sucked!
We now drive two hours to get to Madison and Dr. Iskandar, who we love and trust.  It is well worth the ride.  

[sherimom]

Hi,
I'm originally from IL and we looked into it for my son's surgery. You may want to try University of IL-Chicago, in Chicago, or possibly Lutheran General Hospital in Park Ridge IL. Not sure where you're from but hope it helps!

[naenae1822]

Thank you for responding and your help.  Believe me I would love to and would be more than willing to travel to the best possible NS who specializes in Chiari. I don not want to settle. My insurance only allows me to go so far so a NS in IL is pretty much my only option. I figured Chicago would be much better than any of the options around me. I am about 3 hrs away from Chicago.  I have been told Dr. Frim treats adults and is a great NS but I have also read a few bad reviews about him that worried me.  I am new to all of this and I just want to make sure with my limited options due to insurance I am able to go to a Dr who understands Chiari

[selmaS]

Hi and welcome to the Chiari forum.

I am so sorry u r not getting the help u need, but there are more Drs that do not understand Chiari then there are those that do.

We do have a list of Drs for u to use to research them....the list is NOT a referral nor an endorsement....http://www.medhelp.org/health_pages/list?cid=186

I know there is a Dr Frimm out there, not sure if he treats adults....

He would be the person to ask if there is another NS in ur area......outside of asking him u may need to travel....many of us have and it is well worth it to go to a Dr then settle with a Dr close to home as it can lead to more issues and problems...so do research them and take ur time. Get ALL testing to rule out related conditions.

Know u r not alone : )