Hi everyone, my 13-year-old son was just diagnosed this week and we have to see our neurosurgeon on April 7th. He was just having a few "slight" headaches and the primary doctor just decided to go ahead and do an MRI. I figured there would be nothing there, as he has worn glasses since he was in kindergarten and just assumed it was his eyes changing again. But we did get a diagnosis of Chiari and I was just totally shocked. He appears to be a very healthy young man, plays all kinds of sports and is very active. He does not have the Syrinx but does have herniated tonsils at 14mm. I really don't know what a lot of this means but I must say that after joining this discussion and seeing some of the comments I do feel a little bit better. The primary doctor acted like we had to see a surgeon right now and do surgery, which I am kind of leaning towards is not going to happen (hopefully). Like I said, the only real symptom is mild, very mild headaches and they are not everyday. We did discuss it with him but I have not told him what the other side effects include, as he would surely start developing them (he is a bit of a hypochondriac). It took us 20 minutes to convince him that we were being honest and he did NOT have a brain tumor, as he was convinced he did. He has actually done pretty well with it but I am afraid of what the doctor will say to us and get him all worried again. It is possible that he can go on with his life and not experience anymore symptoms, and do all cases eventually lead to Syrinx? Just hoping for the best and wanting to also say thank you so much for all the info I have been getting on here, it is such a help.
FWIW fewer than 1 in 5 CFMs become surgical. Its impossible to predict what will happen but I will warn you as I am sure you have heard, things can change rapidly at this age. I think your measured approach is great. A note to the doc about your concerns before the appointment is not a bad idea. Most are pretty careful anyway. The absence of a syrinx certainlly gives you some time to process information.
Whars you sos favorite sport?
Hello. My daughter will be 13 in April and was diagnosed 2 weeks ago. Her pediatrician freKed out so bad he was going to admit her the day he got the MRI results but the Neuro said to calm down. We had the 2nd mri which is 3 hours long to look for syrinx. She does have one but its slight. Her chiari is 18mm and she only gets headaches when she tumbles. So if she doesn’t tumble she’s fine. We met with the head of neurosurgery at Vanderbilt Childrens Hospital in Nashville last week and he reassured us that surgery can wait. He said it’s really a quality of life thing and when it gets bad enough or she gets more symptoms (and she will he said) then do the surgery. We may go ahead and get it this summer while she’s young and healthy anyway and out of school. If I can help please let me know. It’s very scary but Vanderbilt eased my mind a lot.
Hello, my daughter was diagnosed with Chiari when she was 7 years old. She had her decompression at 8 years old. I like you would said should we do this? can it wait? Honestly when she was diagnosed her herniated tonsils were at 8mm. I thought ok we can see what happens by the time we went to the dr again a few weeks later it was 12mm. So we went forward with it.
I personally will tell you it was the hardest decision for a parent to make on the behalf of your child. But, it was also the best thing we could have done for her. She is 100% Chiari free and back to all of her activities.
I truly feel this is something you and your child’s doctor should discuss. I am unaware of what will happen if you just let it go with out having any decompression. I feel if he is functioning then let him be. I have read the older you get the harder it is and I am sure it has to effect your body. Maybe your doctor can decide if medication can help with his headaches. I personally am not one for giving my child medication, but maybe something out there that is non addictive. I would love to talk more with you and I wish you the best. My daughters story is on the Chiari webpage. Under kids can conquer Chiari too! Best of luck.
My son is now 14 and was decompressed in dec when he was 13. He was having some random headaches and was also having vision issues and migraines brought on by exercise, usually after his basketball games. He was also missing quite a bit of school due to just an overall feeling of not feeling well. He was at 8 mm in nov. A month later he was at 20mm and they discovered a small syrinx (the day of the surgery) They now think he has IIH - increased spinal fluid pressure which could have caused the syrinx in the first place. I felt like he was feeling so bad that we needed to do the surgery. I totally regret not getting a second or third opinion though. Also do not let them prescribe amitriptyline for the headaches, it has horrible side effects, especially for kids/teens. You really do need to find a true chiari expert. The one good thing about the decompression is his vision suddenly got better. Let me know if you have any specific questions.
Tracy you regret not getting a second or third opinion? Was the surgery not successful?
My 13 year old had the minor surgery where they just took a bit of his spine out. Just this little bit helped him immeasurably. Hopefully, he won't have to have anything more. If the symptoms are not too severe, try the minimal surgery first. We went to Dr. Feldstein at Columbia University in New York. Just two days in the hospital, and he was back to normal in a week.
Populist Mom The doctor at Vanderbilt said he opens the Dura as well because there’s a 40% chance that you have to come back and get it done later. Is that what your doctor told you?
So will you daughter possibly have problems in the future or is this actually fixed? Sorry, just trying to understand. I was thinking if we had surgery to get it repaired, would he need further surgeries in the future possibly. Also, I was afraid that maybe he might have lasting effects from the surgery. I am not even sure what the neurosurgeon is going to say at this point but just want to be prepared somewhat.
Nkp517 said:
Hello, my daughter was diagnosed with Chiari when she was 7 years old. She had her decompression at 8 years old. I like you would said should we do this? can it wait? Honestly when she was diagnosed her herniated tonsils were at 8mm. I thought ok we can see what happens by the time we went to the dr again a few weeks later it was 12mm. So we went forward with it.
I personally will tell you it was the hardest decision for a parent to make on the behalf of your child. But, it was also the best thing we could have done for her. She is 100% Chiari free and back to all of her activities.
I truly feel this is something you and your child's doctor should discuss. I am unaware of what will happen if you just let it go with out having any decompression. I feel if he is functioning then let him be. I have read the older you get the harder it is and I am sure it has to effect your body. Maybe your doctor can decide if medication can help with his headaches. I personally am not one for giving my child medication, but maybe something out there that is non addictive. I would love to talk more with you and I wish you the best. My daughters story is on the Chiari webpage. Under kids can conquer Chiari too! Best of luck.
That is awesome news, I really need to hear positive stories such as yours. Thank you so much for the info and your time.
Populist Mom said:
My 13 year old had the minor surgery where they just took a bit of his spine out. Just this little bit helped him immeasurably. Hopefully, he won't have to have anything more. If the symptoms are not too severe, try the minimal surgery first. We went to Dr. Feldstein at Columbia University in New York. Just two days in the hospital, and he was back to normal in a week.
Thank you for the info, not quite sure what to expect when we finally get to the neurosurgeon. We don't go until April 7th, so wish it was tomorrow, it is hard waiting. I just want to do what is right for him, and I have no idea what that is. I am afraid of surgery because what if something goes wrong and he is in worse shape than he is now, which is virtually almost symptom free. But I also don't want to wait if his best outcome is to do it now. I know I have to wait and see what the doctor says but just want to get some info ahead of time. He plays basketball, baseball and football but football is his favorite sport and he can't wait to get back out there and run and tackle, I just don't have the heart to tell him that he probably won't be able to do that anymore. I do, however, hope he will still be able to play baseball and/or basketball. Just a wait and see game at this point.
TJ1 said:
FWIW fewer than 1 in 5 CFMs become surgical. Its impossible to predict what will happen but I will warn you as I am sure you have heard, things can change rapidly at this age. I think your measured approach is great. A note to the doc about your concerns before the appointment is not a bad idea. Most are pretty careful anyway. The absence of a syrinx certainlly gives you some time to process information.
Whars you sos favorite sport?
Actually the neurosurgeon at Vanderbilt said they had many male athletes that get the decompression surgery and within a year they’re back playing contact sports.
Oh wow, that is awesome. I have always been worried about him playing, as we all know what can happen in football, or any sport for that matter, but I don't want my son to have to quit doing the things he really loves. Thanks for that, I cried for two days and my husband is still beside himself we were so worried about the health of our son, but I do feel a little better and just anxious to get in to see the neurosurgeon. All I want is for him to have the best quality of life possible. THANK YOU
I have just been through all this myself as my daughter cheers and does soccer. The neurosurgeon of course said constant contact sports are not good in any aspect but after the surgery and they’re fully recovered most of his patients go back to them. Where are you located?
So glad she is doing so well, so happy for you all. We are in Louisville, KY
My daughter is probably going to get her surgery this summer. You really should drive down to Nashville and go to Vanderbilt they do a lot of Chiari surgeries
Thank you so much for that info and I will definitely consider that option. I know the neurosurgeon they are sending me to has done some, not sure how many, but there was an article in the local newspaper about him and a girl that he recently operated on for Chiari. I just have a hard time wrapping my brain around the fact that he could possibly be facing surgery, I just can't go there until I hear it myself. You are very kind. If we have to have surgery, like yourself, hopefully they will do it this summer.
Prayers to you. I am having a hard time as well as a parent. I don’t want her to have to endure surgery but also don’t want get to get worse symptoms.
Anyone near Nashville: I’ve benefitted a lot from medical qigong treatment by a fellow named J Michael Wood 615-■■■■■■■■. I hope it’s ok to give names and phone #'s here. I realize it sounds pretty hoaky but it really helped me. Many years after decompression surgery in '93. John Barnes myofascial release was also quite helpful. But everyone responds differently to meds and treatment. God bless you all.
I know, those words are exactly the words I would use. Praying for you all as well. I pray our children find many, many, many years of great health. I will be thinking about you.
Suz said:
Prayers to you. I am having a hard time as well as a parent. I don't want her to have to endure surgery but also don't want get to get worse symptoms.