I’m in the military and currently stationed in Nashville TN. My 11 year old daughter was recently diagnosed with an aneurism and yesterday we were told by our specialists they were not comfortable treating it and gave us some names to call. Any advice on where we should start?
I hope you will get a good number of recommendations from members, Justin. My first thoughts would be the pediatric neurosurgery team at the Children's Hospital at Vanderbilt. And, I would also recommend getting a long-distance opinion from Barrow in Phoenix, AZ. Pediatric neurosurgeons are a fairly select bunch. But I hope members here will have direct experiences to share with you. You may also wish to type "pediatric" in the search box at the upper right to see what pops up.
Vanderbilt children’s hospital is where we were being seen at. They gave us a couple of names but none close to us; Arizona and Boston. Barrow institute was one of them; not sure if I can afford to get us out there.
Good to know. Those are both good recommendations, and they have your best interests at heart. I would suggest following up on those, if at all possible.
Dear Justin,
I wish you the very best for your daughter. I hope that you can get her through this.
Thank you for your service.
Sending my best,
Susa
Justin-
As a survivor, I can tell you that Barrow was an amazing place. You can send them all of your daughter's information and they will get back to you. You should also have a recommendation from the Doctor's who saw your daughter. In regards to the cost...you can't afford not to. It sounds so cliche but it is true. We used credit cards, borrowed money from family and I am here to tell you about it. I wish you and your family all the best!
Justin I assume you are off post for care and depending on tri-care. BUT there are a couple of things you can do to expedite transportation etc as well as work things for necessary time beyond leave with your commanding officer (its easier if done by the book) Contact your Chaplain and full explain your needs he can begin paperwork with the Red Cross and even arange transportation through Medivac flights (If he is unsure let me know, I happen to be pretty frindly with the area wide Chaplain.
When you have chosen a center of Excellence, they will assign a social worker to help you through the maze of tricare transportation housing etc.
Also call phone: (615) ■■■■■■■■ and ask for the military affairs person tell them your story and have them start a file ask specifically that they have your military records marked "congressional interest" Congressman Jim Cooper is a pretty good guy despite his Blue Dog Coalition connection he cosponsored a bill to release funding separate from the budget to fund student partial loan forgiveness for pediatric rheumatologist to locate in areas un or underserved. (a rather big project of mine right now) Hecares about those in service and kids.
There is a pediatric group under groups. I would look there also. I am not sure if any of the Shrine Hospitals do this type of work - I do know several friends whose children went there - one with a very rare storage disease. Or Duke's in Raleigh? They also saw the child with the rare disease -they were the only hospital in the US to do certain medicines.
Good luck - I hope you find someone that is wonderful!
Sherri