Anyone I can talk in person with?

[andrewfvfv]

Hi. I have been suffering for 7 months 60000 dollar hospitals bills later. I received a lumbar puncture which I believed worsened the condition this past Christmas. Just found out I have the formation and now it all makes sense. Symptoms getting worse by the second. I need to talk to someone in person or in Chicago land area. Is their anyone?

[Marybz]

There is a Neurosurgeon, Dr. Heffez, in Milwaukee.  He specializes in Chiari Malformation, and has a clinic at Columbia/St.Mary's.  I went to see him and he is very nice and understanding. He has a website.  Google his name and city and it will pop up.  I agree with Selma, to research NS.  This is just my personal experience.  Good Luck and God Bless

[selmaS]

Hi..well the LP may be y u felt worse, if they drew the fluid too fast and unaware u had chiari they could have pulled the tonsils down further...it is often suggested we should not have NP's unless medically necessary .......

U may want to ask at the NS's office about local support groups...I am not familiar with where all the groups might meet....but ur Drs office should.

I hope u did research on ur Dr...the list here is to help u find a starting place to research and is not meant as a referral...we all have to find the right Dr for ourself as we may not like the same dr as someone as ....it can be and will be a personal choice : )

Once u do get to a chiari Dr u will see the diff in care......

And I do hope u continue to use this group as a means of support.....

      "selma'

[andrewfvfv]

hello. yes I am in the chicago area and am 28 years old male student.had to quit everything in my life back last augaust. I have been through alot as many of you have and continue too. Many hospitals thousands of dollars of bills  drom hospitals and ER visits its been so bad. No diagnoses except fibromyalgia. even been to the mayo clinic back in jan febuary because the lumbar tap i recieved here in chicago worsened my problems so bad. couldnt walk for months. now im starting to have issues walking again. just found out i have chiari malformation 1  4 weks ago. neuroologist here said it wasnt a big deal but now that i rsearched it on my own i found out it all makes sense. well almost 85% percent of my symptoms. the other issues I dont know could be something additional to this.
im looking for some support groups i can talk too in my area anywhere in chicago land area. i live in naperville. i was just curious. yes im seeing a neurosurgeon . a doctor Gail L Rosseau from Norht Shore that i found from this list here. Does anyone know if she is any good. Im not looking for possible brain surgery i have a MRI picture on my head take n 4 weeks ago. I do have issues with my spine to but no mri. please if anyone can direct me towards more support groups in my erea that would be great.

[selmaS]

Hi and welcome to the Chiari Forum.

I am not sure who of the members here may be in ur area...but, chatting here in the public forum or by private message is one great way to connect with others with the same issues.

Most of us do have journals with our surgery experience posted so others can share in them....

We also have a list of Drs u will want to research so u get the right dr for u......http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1503562
The list is not meant as a referral, only a means to help get u started on ur research.

  "selma"