how can you decide on weather to go ahead with decompression surgery for your 2 and a half year old who is so happy but does have symptoms and the nuro saying they will probably need it,its all so scarry what do you do..
gilly,
I am so sorry you and your family are in this position. I do not have a child, but if I were in this position, I would seek more than one medical opinion and follow the advice of the doctor I find most knowledgeable and caring as well as the advice of my family and my own heart.
Please know you aren’t alone either. There are many parents here and I am hopeful they will share experiences and provide support.
I wish the best for you and your young son. Please keep us posted.
Hugs,
Laurie
Hi Gilly, I have a son who is now 5 but was diagnosed at 14 mos old with Chiari and Syrinx. I saw Dr. Eric Trumble who is on this forum in Florida -he is who diagnosed him originally and then we moved to Maryland right after and saw Dr. Mark Iantosca at the Hershey Medical Center in PA. Both recommended surgery which was apparent. My son although happy was plagued really bad by Chiari and the symptoms and there was no other option than surgery. My suggestion to you is to make sure you have a recommendation by a neurosurgeon who specializes in Chiari. The thing about Chiari is that the brain is not where it is supposed to be which causes mass symptoms. Having the decompression surgery puts the brain back where it is supposed to be alleviating the symptoms. Kids are resilient, I couldn't believe how well my son took surgeries and the recovery...like a champ!
You don’t know. That’s it. You can’t know! I am going though the same problem but it’s for the surgery on myself. I am 15 so it is very difficult. But you have to think of the upsides and the downsides and see which column has more.