Opinion about adult daughter

[Chiariquestions]

Hi.  So my daughter is 18 and diagnosed with Chiari this past fall.  She is still living at home. She attended two semesters away at college but due to her symptoms and pending surgery, she has taken the year off.

After receiving her diagnosis, she informed us that she doesn’t want anyone to know about it.  She thinks everyone will treat her differently.

We want to respect her privacy, but it feels like she doesn’t understand what her dad and I are going through. We need the support of our friends and being able to share what we’re going through might encourage others.  

She won’t even talk to her own friends about it. We’ve tried to explain that this is a lifelong condition and she needs a support system.

Does anyone else have experience with adult children and Chiari?  Please help me.  Don’t know how to get through to her.

[selmaS]

Hi and welcome to the Chiari forum.
It's great to see parents advocating for their family member and themselves in dealing with this condition.
I was 49 when I had the Chiari decompression surgery. I didn't tell my parents about the surgery as my dad was diagnosed with congestive heart failure....I felt they were dealing with enough. I also went out of state for surgery as I did not want anyone to visit....so I kinda understand your daughter a bit. What I did do, was to educate myself on this condition by doing research and chatting with others right here on this forum. If she starts with people that share in her experiences and that can understand may help her talk about it to those that may not understand.
There are many Drs that do not understand how we are affected  by this condition and some even call themselves Chiari specialists....

And you are very welcome to stay and get support here until your daughter is ready to share her fears with others she is familiar with.
Know you are not alone and we will help the best we can.

[Chiariquestions]

Thank you so much.  

Are there any Chiari specacialist in Texas or the surrounding states?  I’ve tried searching this group but cannot find any type of list.  We’re looking for a second opinion and one that can follow her more long term.

[selmaS]

Hi, we do have a list that was compiled by the members here of Drs they have been to, treated by and liked....the list is not a referral nor an endorsement for those listed it is meant to be a tool to research Drs.
We also need to educate ourselves so we will know the right Dr for us....

TEXAS

Dr. Jeremy Denning
Dr. Richard Jackson
Dallas Neurosurgical and Spine Associates
Presbyterian Hospital of Dallas,
Professional Building III,
Suite 220,
8230 Walnut Hill Lane,
Dallas, Texas 75231
Phone: [phone]

Victor Kareh, MD
Neurosurgery, Spine Surgery
21216 Northwest Freeway
Suite 230
Cypress, TX 77429
281-640-2121

Gulf Coast Brain & Spine Institue
Dr. Peter J. Yeh, MD, FACS
Board Certified Neurological Surgeon
6565 West Loop South, Ste. 450
Houston, TX  77401
713.661.8900
713.661.5535 fax

Dr. David Jimenez
UT San Antonio Health Sciences Center
7703 Floyd Curl Dr. (MC 7843)
Medical School Building, 102F
210-567-5625 • FAX [phone]
Adults and Pediatrics
San Antonio , TX 78229-3900

Dr Dong H. Kim
Mischner Neuroscience Associates
6400 Fannin Suite 2800
Huston, TX
713-704-7100

Dr. Rob Parrish
Methodist Hospital
Huston, TX

[lynnbrook177]

Hi there,
As a mother of a daughter who is a therapist, I can tell you that she would in courage you to get her a therapist. Tell her that it would be a private support system for her. Someone she can say and feel anything with.

And from me, a mother who has Chiari, I would tell her that controlling stress when you have Chiari is very important, and there is no better way to help with it than to have someone to talk to! ❤️