thanks

[chadry]

Hi selma,
I found your reply on the back forum. I have back and neck issues, not chiari related but my 12 year old daughter has chiari. I usually refer people to asap because I was not even aware of the forum here. I have been reading through some posts and it is very helpful.I have found people listing their symptoms that are similar to my daughters.
I found her doctor for a second opinion through the asap site and we feel very comfortable with him. We go back at the end of this month to discuss what we will do. She had vestibular testing done for her balance/vertigo issues and we did find out that her inner ears are OK. In fact she is particiapting in a study at Dupont"s Childrens hospital in Delaware for chiari children and balance problems. It is very interesting.
It is a difficult decision to make to have the surgery or not. I know it is hard for people to decide for themselves if they should have it done and believe me it is so difficult as a parent to make that decision about your child. Right now she is living a somewhat normal life and I am not sure if I want to take the chance of the surgery for the fact that maybe something will go wrong and she will be in worse shape after. One thing I did read here that I was not aware of is the fact that this could be bigger. That info alone has made a big impact on me. It is something that I will bring up at our next appointment. Right now it is cmm na dhte doctor said it is kind of large but it is not wide and that makes a difference. According to her brain scan, she had 2 done they say her flow is normal.
I just want her fixed. That's all I want. I am leaning towards the surgery to fix the problem.She is young and I want her to have a chance at some normalancy in her life. I always second guess myself though. That is the problem.
Everyone is so correct when they say that some docotrs do not even feel this is a problem. My daughter started to have dizzy spells that would come and go so finally her ped. said enough is enough and sent her to a nuro. When the test came back for Chiari she completley brushed it off like it was nothing. She didn't feel this was causing her problem. I left that office thinking everything was fine until I started to do some research on my own and was shocked at the lack of understanding of this condition.
I took her to a top doctor in Phila. and he said she was an excellent candidate for the surgery. I took her to Del. then to another top doc there and he feels the same.Both of these doctors are very knowledgable with Chiari.
My husband was not too sure about the surgery but one time at one of my doctor visits we were asking my doctor about this condition and the surgery and he made such a good point that now my husband is changing his mind about her having the surgery. Here is some food for thought for other people making this decision. He said would you rather have her go to some hospital if there was an emergency and have this done by someone who knows nothing about it or would you rather have it done in a controlled situation with professionals who know what they are doing with this condition when it is not an emergency. Kind of makes sense. Gives it a whole other perspective to the situation. I had never thought of it that way before.
So I just wanted to thank you for making me aware of the forum here and I will be reading the posts going on here as well as my back forum.
Take care to everyone.
Chadry

[selmaS]

I wish they did that for adults.......if u don't mind, would u add the drs name and info to our thread on chiari specialists? We r creating our own list of drs forum members used and like.

I hope to contiune to see u here on this forum.

godspeed
"selma"

[chadry]

We seen a DR.Campbell at Dupont Hospital for Children. I found him through asap when another mother posted about their good expeience with him and her child's succesful surgery. He is very good with Chiari andi t is one of his areas of interest having preformed many decompression surgeries. He took everything we had to say seriously and did  brush off anything we had to say. He took his time with my daughter and never rushed us through our appointment. he was more than willing to answer any questions and he was the one that recommended that she particapate in this study for children with chiari and balance disorders. He told us we did not have to particapate and that he would set up testing to have her ears and eyes and gait tested without it. So we chose the study. He said the surgery was something for us to think about and it was not a rush at this point.
So we go back on the 30th to talk about the test results and where we can go from here.
As far as the study goes they are looking for kids that have the surgery and the kids that do not. They want to check the balance with both kids. They want to see if the surgery makes an improvement for balance issues in children. If she does not have the surgery she goes back in a year for testing but if she has the surgery she goes back a few more times after the surgery to see what progress she is making.
This is a very in depth study and it takes all day but it so worth it. She is older so she can understand what is going on and give them answers to their questions plus she can follow more easily the directions given to her. It involves a PT evaluation and then there are the ears and eyes tested with different equipment. they also have a gait lab that tested the way she moves and walks. WE both found it very intersting and to tell you the truth I am so glad she had it done so that it ruled out any other issue there may be. They made her wear a scarf around her neck the whole time because they do not want to know if she had the surgery or not for the first initail test. we could not tell them if she had it or not.
I will post back and let you know what is going on.

[selmaS]

I am so glad u were able to get useful info from this forum. What dr in Philly did u see...I know some have faired well there, but I did not have a good experience and would reccommend looking for chiari experts....not all NS are experts .....just familiar, u deff need a specialist. I attended the ASAP conference in July and met several of the drs....I plan to go to TCI.

Do u have copies of all her MRI's and the reports?....most of us here have found it best to keep copies...it is easier to get second opinions.

I hope u continue to post here and let us know how ur daufghter is doing.

Good luck
Godspeed
"selma"