Chiari Specialist

[Adriani]

I am looking for a Chiari Specialist in Dallas area (for a teenager) . Thank you

[selmaS]

Hi...I do not reccommend Drs bcuz we r all different, u may not feel the same about a Dr that I do, personalities and all come into play and u have to feel comfortable with the Dr u choose....and if I were to say go to this Dr and things went poorly for u, then u may not be happy with me....I also do not want that responsibility.

I will say where I went and what worked well for me, but feel everyone needs to see a few Drs and go with the one they feel is best for them,

The lawsuits were frivolous and I did have my surgery at TCI during the time this supposedly  took place, it was more of the hospital staff that  prepared a patient for surgery when the Dr was not in the hospital and had cancelled....they should never prepare someone unless the Dr is in the OR...so to blame the NS is not right, some rag magazine got a hold of it and they ran what they earn and some greedy people jumped on the band wagon....that is JMHO.

Ne one of us can end up worse post op, and this is y u need to make sure all the testing is done b4 u decide to have surgery...u want to know all the related conditions b4, so they  take them all into consideration with the procedures they use.

The names I mentioned to u were ones I know treat children...as I said not all Chiari specialists do...so u do have to check with them to see if they work  with ur ins, if not what it will cost u out of pocket to go, many do payment plans to help u be able to go....but u have to really search and even if ur ins does not  cover it all, find out what will be covered and appeal to ur ins to get them to cover more.

Try to relax, take ur time to research as it is so important that u and ur DD feel comfortable with the Dr.....

  Make sure the benefits of surgery out weight the risks...there is no rush unless she is having  breathing issues....or some other life threatening issue....many of us do have time to look for a Dr....the biggest problems arise when we go with " a dr close to home" , " the first one to offer surgery", "this one seemed to understand chiari".....those r not things u want to say about ur DD's Dr.....

[Adriani]

HI Selma, thank you for your reply and recommendations. I continue my research and I am willing to go out of town to consult with any recommended doctors in Chiari. You gave me a few options out of town like Dr. Frim (Chicago) and Institute of Chiari in NY. IF you had to personally choose between the 2, not sure you could recommend one. My concern is, I was thinking of going to NY, but saw same lawsuits and some reports of people that think they were unnecessarily submitted to surgery and their situation got worse. Needless to say this is all news to me and I have been daily trying to educate myself and pray for G'd to guide me to the right place and doctor. Needless to say I feel lost and desperate sometimes, I just wish I can stop and proactively prevent that my daughters health and symptoms deteriorate. Thank you

[selmaS]

  Hi...symptoms can cycle...so they can appear to go away for a time, and they can flare up and get real bad at times too....it is a roller coaster ride....

Until u get more testing to see if  ur DD has a CSF obstruction and related conditions to chiari....

I wish I knew of a Dr in ur area that dealt with children but I don't....there is a Dr Frim in Chicago....and Dr Henderson in MD and TCI in NY....but u will have to travel.

Keep a journal of how ur DD feels and what symptoms she is having....track her activities as well as they have a direct effect on symptoms as will stress.

This will help u figure out how to cut things from her schedule to help her function and keep symptoms at bay.

  Get copies of all tests she has had to date, make copies of them and the reports and send them out to a few known Chiari specialists......

Continue to educate urself on what chiari is and how it may affect ur DD....and what testing is expected by the Drs she will see....we do have many helpful tips and info in the Health Pages - http://www.medhelp.org/health_pages/list?cid=186

[Adriani]

Hi Selma, the 2 docs in Dallas area just see adults. My search continues. My daughter (13) was diagnosed with Type I. 8 mm, she is having headaches when she stands up or does a drastic movement, accompanied by blury vision, and pain on her joints  that come and go. I went to a neuro surgeon who said it is our decision if we want to do sugery based on: can she live with the symptoms or not? This is as much as I was explained about it. But from my searches online I am confused and insecure. What should I expect, can the symptoms get worse  or just stop where they are? What do I do to help my daughter? How can I find the right doctor?    Sorry and thank you.

[selmaS]

  Hi and welcome to the Chiari forum.

  We do have a list of Drs that members here have been to and liked....u may want to look at the list and  use that to compare  a few Drs to the one jreese suggested....it is always a good idea to see more then one Dr.....

The list is in the Health Pages as well as a thread here in the forum-
http://www.medhelp.org/health_pages/list?cid=186

[Adriani]

Thank you for the recommendation,I will call and try to set up an appointment with Dr. Jackson. My daughter was just diagnosed with Chiari I, 8 mm and she is having headaches and blury visio, and I am affraid if these symptoms can worsen or even what to think, expect or do. I hope you are doing fine.

[jreese7]

My  neurosurgeons name is Richard Jackson with the Dallas neurosurgical and spine associates. I live in Oklahoma and was getting blown off by every doctor here researched him and he specializes in Chiari. Hr worths with Texas presbyterian of Dallas. Which by the way, everyone is really nice there.