Aidan is 5 and has had just about every symptom from Chiari since birth. We only found out is was Chiari in September and his surgery is scheduled for Dec 5th. All the symptoms although numerous and it seems more often have not been devastating, I am worried that we are putting him through surgery for no reason. What if it gets better on it’s own. When we asked the NS if he thinks we should have the surgery, he said it was not emergent, he said there was a possiblility it could fix itself but there is also a possibly that it could get worse and he felt we would be putting off the inevitable. He said he would recover better at a younger age. I am just struggling now as we are getting down to the wire.
Aww I bet it is tugging at you but you need to feel confident that you are doing the right thing for your son, You must remember Aidan can feel your worry which in turn will worry him. I havent heard of chiari "healing its self" and i do agree you would be putting off the inevitable. & I agree kids are faster to heal HUGS!
Dear Aiden's Mom,
IMy heart goes out to you. It's bad enough when it is you who is having surgery, but it is of course more frightening when it is your child. I would want to be sure that I had someone who does a lot of the Chiari surgeries doing it; I think that's the key to a good surgical outcome and recovery. Also, someone who won't recommend surgery if that's not the best course of action at the time. As for me. I lived a very long time without surgery with minimal symptoms. I'm a (young looking LOL!) great grandmother (my granddaughter is in the picture with me) and I just got diagnosed in Dec 2007 and had my surgery in Jul 2010. So, I'm living proof that it is possible to live a long good life with Chiari if you're not very symptomatic. All you can do to set your mind at ease is to have the very best doctor you can find and then trust them to guide you as to the need for surgry. Since we aren't medical people, that's pretty much all we can do. So, I hope the surgeon who is doing this really feels this is the best course of action. It's a tough decision; we, of course, don't want unnecessary surgery for ourselves or our children. I believe in God and I looked to him to help me make the decision to have the surgery; we did a lot of talking in the middle of the night. it took me a long time to make the decision, but once I did, I was at peace with it and the fear of the surgery pretty much went away. I didn't know if it was the right one but I told myself that I was making a decision to free myself of worry and give myself a chance at a better life and that helped me a lot. I had been told that Chiari can be progressive and I didn't want to wait until it was too late to do anything to help myself. I also got more symptomatic after a tramatic accident. It's a tough decision I know, and I'm sure it's even tougher when you are making it on behalf of your child who so young and may not quite yet be old enough for you to determine just exactly the affect Chiari may be having on him or will have in the future. That's where you just have to have a surgeron who will help you make it, based on his best judgement and exerience with dealing with Chiari. I don't know any chiari doctors in your area, but, if you ever want another opinion, in this Wash DC area, there is a very renowned pediatric surgeon (Dr. Ben Carson) at Johns Hopkins Hospital in Baltimore MD. There is a lot of material available on him and he has written quite a few books. There are a couple of people here who take their children with Chiari to him and he has not recommended surgery for either of them unless or until they become more symptomatic. They seem very happy with him. I have never heard of Chiari going away; only that it may or may not become symptomatic and symptoms sometimes come and go. I understand that Children do recover easier from surgeries. But, I'm the oldest person I know to have had the Chiari surgery and I did well too. The surgery and recovery for me wasn't too bad at all. My prayers are with you and your family as you make this very dificult decision, the outcome which, I know as a mother, is so important to your child's future. I know it must be extremely hard for you. God bless you and your family as you go through this difficult time.
hugs and blessings
Shirley
Our NS is wonderful and he is the Chiari specialist in Cincinnati. He is the director of the Neurosurgery department and has wonderful outcomes from his surgery. He advised us that that Aidan would likely get worse and that although it was not emergent that he had so many symptoms that Surgery would be recommended. I think I just would have rather he told me that I had no choice. It is hard to see your 5 year old playing around with his brothers and seem "normal" knowing that he will be going into surgery in a week. I think I freaked out a bit. We have 2 different MRI's and several people have seen him in the past 3 months, but Dr. Krone has been by far a God Sent! He was so calming and comforting, but momma got nervous!
razzle51 said:
who is doing the surgery ? Is he a chiari specialist ? If you feel uncomfortable about this , then maybe you need to postpone for a little bit . have you gotten a 2nd opinion. where do you live? R
I want to thank everyone for your support and care. I spoke to Aidan's pediatrician yesterday when we did his pre-op physical and she basically told me that I did not have a choice. As a mom, I guess you need someone to tell you that you do not have a choice. A friend of mine told me yesterday that there is no telling how bad Aidan has felt throughout his 5 years and has thought that it all was normal. He does not complain unless it is bad, so how much is he suffering that I don't know. After surgery we may be comfortable. He does not have any one serious symptom, but he has almost all of the the symptoms they are just minor. There is not a day go by without an issue coming up. I have prayed to God about this for 3 months. I get peace with it, but my stupid human behavior starts questioning again. I have peace today. My husband has been my rock through this when usually I am the one who is trying to keep him sane. He did not do so well at the beginning of this trip, but now he is like UBBER DAD! I think we just switched rolls. I have found so much support and resources from all of you. I have also recommended this site to another young lady who has a 7 year old with Chiari plus other issues. It is funny....they say this is rare, but since Aidan has been diagnosed I have seen it everywhere.
I agree that it's easier when someone says you don't have a choice. I know I rely on the doctor's expertise to tell me IF I should have surgery. If it's up to me, I will always vote NO unless I absolutely need to do it. I was told I didn't have a choice either, but the decision to do it was still hard. I'm glad you have so much confidence in the neurosurgeon; that helps a lot.
No it is Dr. Krone. He is the director of the neurosurgery department at the children’s medical center in cincy.
razzle51 said:
are you talking aobut Dr Tew chiari clinic in Mayfield ?
Aidan had his surgery on the 5th. He has done wonderfully and was discharged on Friday. We even made it to church today. It was rough the first few days, but once we got his medicine regulated he did great. His pain is now regulated by Tylenol and motrin.