So, I'm wondering has anyone had a child that was unsymptomatic and had the surgery and remained that way? That's my hope right now is that our little Luke will never have symptoms~ does that ever happen?
Hi Luke's mom,
Great question!!! From what I have learned....unless there is a syrinx along with CM and the child is symptom free...most NS do the watch and see approach.
That being said..if a child has a syrinx and /or is symptomatic ......the outcome of the surgery is very very good....the earlier it is caught and treated the better.
Luke is way too cute!!!!!
Peace,
Lori
Thanks Gemma~ how is your daughter doing? The neurosurgeon at Mayo told us that he would beable to go back to school after two weeks but mostly everything I read seems that it takes much longer than that to recover. Just wondering how she is doing and was she in a lot of pain after? I'm hoping to read your success story too.....so glad to finally get to chat with other parents going through the same thing. Peace~ Kristee
Gemma said:
We understand completely...it's been two weeks since my daughter's surgery....she so wants her life back...it's too early for her to tell...I really believe that she will be able to do most of the things prior to being symptomatic...It's hard not having the answers and wish it was as simple as a broken bone...I'm ready to read success stories...wishing little Luke and your family the best...we are trying to enjoy all the little things while we are waiting for our success story.
My daughter was 6 years old when she was diagnosed and was asymptomatic at that time. She was only diagnosed via her regular scheduled MRI post brain tumor removal. And then it was only found because I had been diagnosed with Chiari and the neurosurgeon was on alert to look for the Chiari in my daughter. She had decompression surgery at the age of six and is ten years old now. She remains asymptomatic and is healthy and thriving. As is often the case with younger patients, she had a very quick recovery post the decompression surgery. I don't know what this means for her future as far as adulthood. At this point she has no sign of Chiari or the symptoms that are associated with it and I hope she never does.:) One more note is that she did have two syrinx that have all but resolved in the last 4 years post op.
Thank you so much for replying...this totally brought a smile to my face! I have been searching everywhere for a case similar to ours with a hopeful outcome..thank you. Do you worry about her hitting her head or playing rough with other kids...can she do everything that all other kids can? Our son is so active~ he's the youngest of five who are all in sports and very competitive so he spends three or four nights a week at a game of some sort and loves football, baseball and basketball. I know in the scheme of things that as long as he lives a normal life that should be great but I'm hoping he'll still beable to do the things he loves. I wish you and your daughter all the best! thank you for making my day!!
Ashland2011 said:
My daughter was 6 years old when she was diagnosed and was asymptomatic at that time. She was only diagnosed via her regular scheduled MRI post brain tumor removal. And then it was only found because I had been diagnosed with Chiari and the neurosurgeon was on alert to look for the Chiari in my daughter. She had decompression surgery at the age of six and is ten years old now. She remains asymptomatic and is healthy and thriving. As is often the case with younger patients, she had a very quick recovery post the decompression surgery. I don't know what this means for her future as far as adulthood. At this point she has no sign of Chiari or the symptoms that are associated with it and I hope she never does.:) One more note is that she did have two syrinx that have all but resolved in the last 4 years post op.
Luke's mom... you are so welcome. I'm glad our story (Ariel's in particular) brought you some sense of comfort as you navigate this new diagnosis and the post-op mysteries. In answer to your question as to whether I worry about head injuries, rough play and/or sports...Yes! As a mother those fears are there. But let me just say that it is so true how resilient children are. Ariel has a big brother (1 year older but much bigger and stronger) and they do rough house a bit - mostly when his friends are over. She also loves sports... softball and basketball specifically.:) However, since she had the syringomylia associated with Chiari I, there is more emphasis on her not doing contact sports per se. For instance, she decided to try a wrestling camp at school and her neurosurgeon kindly scolded us afterwards and asked that we check with her before getting involved with more "contact" specific sports. But hey, she has the drive and ability to do just about anything she wants. So we let her for the most part. She's recently "catching up" on some growth that was delayed a bit after her brain tumor removal at the age of four. It grew from the pituitary gland and the pituitary function was halted for some time and is still. She takes hormones by mouth that her body doesn't produce as a result of low function. But she is growing well now and keeps up with all of her peers physically. We are so happy with her outcome and pray she gets stronger and stays as healthy and active throughout her lifetime! I'm sure Luke will fair as well - if not better!:) Did you say if he has any syrinxes(sp?) with the Chiari? If so, then just be sure to keep in touch with the neurosurgeon on any activities that he wants to do that you might wonder if they are too physical. Otherwise, let your beautiful, resilient child do what he does best... be a kid! Best wishes to you as well!
Luke's mom said:
Thank you so much for replying...this totally brought a smile to my face! I have been searching everywhere for a case similar to ours with a hopeful outcome..thank you. Do you worry about her hitting her head or playing rough with other kids...can she do everything that all other kids can? Our son is so active~ he's the youngest of five who are all in sports and very competitive so he spends three or four nights a week at a game of some sort and loves football, baseball and basketball. I know in the scheme of things that as long as he lives a normal life that should be great but I'm hoping he'll still beable to do the things he loves. I wish you and your daughter all the best! thank you for making my day!!
Ashland2011 said:My daughter was 6 years old when she was diagnosed and was asymptomatic at that time. She was only diagnosed via her regular scheduled MRI post brain tumor removal. And then it was only found because I had been diagnosed with Chiari and the neurosurgeon was on alert to look for the Chiari in my daughter. She had decompression surgery at the age of six and is ten years old now. She remains asymptomatic and is healthy and thriving. As is often the case with younger patients, she had a very quick recovery post the decompression surgery. I don't know what this means for her future as far as adulthood. At this point she has no sign of Chiari or the symptoms that are associated with it and I hope she never does.:) One more note is that she did have two syrinx that have all but resolved in the last 4 years post op.
Glad you found this site. It is what got me through during my little man's surgery. Although, my son had numerous symptoms all of them were minor. However because he had so many they elected to go ahead and do surgery . The doctor said it is easier on them to do it young and they recovery is faster.
He has surgery December 5th. He is 5 and is in Kindergarten. He did wonderfully and was getting jumped on for rough housing in 2 weeks post op. However, he was not released for school until January 2nd. If it had not been for Christmas he would have been able to go back sooner. It all went off without a hitch. We were scheduled for an MRI today for his follow up but he was unable to do it because of a high fever. We are hoping it is just something going around.
Luke looks like a little trooper! A cutie! I hope everything goes wonderfully and I am sure he will be just fine. Please contact me you have any questions or problems.
Thank you so much~ this was so comforting to hear. Our little guy has been through so much since this past September and is still weak from the encephalitis so we're worried how the surgery will affect him. I'm so glad your son did so well~ and I hope he continues to do so! Thanks again!!