My 15 yr old, athletic, and normally active 15 yr old daughter was recently diagnosed with a chiari Malformation, type 1 with a 18mm herniation. She was an avid gymnast for 8 years and now participating in other High school sports. Most of her symptoms developed over the year, during a recent growth spurt. The first symptoms were hand tremors that were noticed in her sewing class, her hands shake constantly, considerable enough that threading a needle is close to impossible for her. She rarely can get through a day without napping or having a headache. We have been to various Drs throughout Boston Childrens who have recommended that surgery would be beneficial, and that they are fairly convinced that her symptoms are being caused by the Chiari. They have ordered an MRI of the spine to see about any blockage.
At yesterdays appt, they recommended us keeping her away from advil, as they feel she could be coming immune and this could be causing the headaches? And to keep a log of her daily sleep and headaches. They also suggested that we encourage her to stop the napping as much as possible. She starts preseason sports on Monday, and I am thinking it will be impossible to stop either one.
My question and concern is, what if the MRI comes back showing no spinal fluid back up? How, as a parent do we make the decision to allow them the surgery? She defintiley has something going on, but how do we ever know if it is directly related to the chiari, I feel as though I am in a lose, lose situation and will always second guess myself for letting them do brain surgery on my daughter. One of the toughest decision I have ever had to make in my life.... I am sure there are many on here that feel/felt the same way, I would love to hear how you made the decision, or not?
As the mom of a 15 year old athlete with Chiari, I can relate to your questions and concerns! Does your daughter have a syrinx (mine did)? The MRI will show that. Boston Children’s is an excellent facility and one of the hospitals we considered for our daughter’s surgery (we went with CHOP as it is also excellent and 30 minutes away). Surgery was unavoidable for our daughter as the syrinx was causing nerve damage. I am hoping your daughter does not have a syrinx but that does make the decision to have surgery tougher. I would wait to see what the MRI shows and go from there. I am here for you to discuss this awful Chiari Malformation and what it has been like having a 15 year old daughter go through the surgery and recovery.
Take care, JoAnne
About the Advil and headaches…the doctor explained that taking Advil or Motrin for long periods of time can cause rebound headaches. They took Alexa off Motrin and prescribed naproxen 250 mg as needed. Luckily since her surgery and rocky recovery she hasn’t needed to take any headache meds lately :). The doctors also recommended a good sleep schedule and diet. Ha…they evidentally don’t have teenagers! Naps are pretty common!
Thanks so much would love to stay in touch with you...her Mri will be in a couple of weeks...sorry, CHOP?? Where is it located??? We have thought about a 2nd opinion, but Boston Childrens is one of the best in the world...how can you compare???
Joalexa said:
As the mom of a 15 year old athlete with Chiari, I can relate to your questions and concerns! Does your daughter have a syrinx (mine did)? The MRI will show that. Boston Children's is an excellent facility and one of the hospitals we considered for our daughter's surgery (we went with CHOP as it is also excellent and 30 minutes away). Surgery was unavoidable for our daughter as the syrinx was causing nerve damage. I am hoping your daughter does not have a syrinx but that does make the decision to have surgery tougher. I would wait to see what the MRI shows and go from there. I am here for you to discuss this awful Chiari Malformation and what it has been like having a 15 year old daughter go through the surgery and recovery. Take care, JoAnne
Well this is it...how do we know? She starts double sessions on Monday and has alreday informed me there is no way she can go without napping..He wants to hear back from us if she is not making it through the day (once school starts), without advil or missing school. Thanks for the suggestion on Naproxen, I will email our nurse practioner and see what she thinks....
Joalexa said:
About the Advil and headaches...the doctor explained that taking Advil or Motrin for long periods of time can cause rebound headaches. They took Alexa off Motrin and prescribed naproxen 250 mg as needed. Luckily since her surgery and rocky recovery she hasn't needed to take any headache meds lately :). The doctors also recommended a good sleep schedule and diet. Ha...they evidentally don't have teenagers! Naps are pretty common!
CHOP is Children’s Hospital of Philadelphia, ranked #2 in the country for pediatric neurosurgery. Boston is #1 which is good news for you but CHOP is a great place for a 2nd opinion. Our NS is Dr. Sutton Chief of Neurosurgery. I am also nervous about Alexa starting school in September not knowing if she can make a whole school day so I know how you feel. I am happy to share my experiences with you, and feel free to email ■■■■■■■■■■■■■■■■■■■■■■■■■. Funny thing about email…our NS answers right away which really helps alleviate some concern!
Why in the world do they want her to stop napping? That makes no sense to me! My gut always tells me more sleep is better, especially with active teens. Did they give you a reason?
With Advil, FYI, we were told to stop Advil before surgery as it is also a blood thinner. For my son's headaches (caused by a cyst, not Chiari), he took Tylenol prior to surgery, as did I.
(Also, with an active kid, you may find she bounces back really well after surgery. I strongly believe better health going in leads to better recovery.)
DS has 15mm. He just turned 13. When we first went for migraines, we were told regular sleep with no naps. Regular sleep patterns are essential for good health no matter what your issues may or may not be. Getting enough sleep was a huge help, and getting deep restful sleep, which is hard to do with daily naps. I also have sleep issues, and in addition to no caffeine after 2pm, I was also told to avoid napping for the same reasons.
Our issue is more that he can't fall asleep despite being tired at night, but it's not every night so for now it gets logged with the other stuff. I do notice that he goes to be voluntarily earlier when we limit his daytime sleeping.
Our general course of action is good sleep, focus on hydration (surprisingly, or not, this has made a big difference), Tylenol as needed (he can't take ibuprofen) and logging any possible symptoms. He plays baseball and hockey, rides bikes and is generally extremely active. I cannot believe how much the water has helped. He will likely eventually need surgery but for now we keep trucking on.
My daughter is nearly 14. She's an A student and amazing athlete. Her issues with CM have been going on for 18 months. She's kept pain and food diaries, gone through varied types of massage, physical therapy, yoga, over hydration, psychology, harder work outs, fewer work outs, endocrinology, more travel/relaxation, less travel/relaxation, did Biofeedback, played with vitamin combos, on pills, off pills, combo-ed pills, updated eye exam, redid all dental xrays, and so much more...
That's how we made our decision to move forward. We've looked at just about everything any doc can think of and it's all been ruled out. The only thing left is the CM.
The downside is it's been 18 months of suffering for her and running from doc to doc, which makes her feel worse. Flip side: all of us feel as if there is no other option but surgery. My daughter, husband, the NS and I are all on the same page now.
My daughter is nearly 14. She's an A student and amazing athlete. Her issues with CM have been going on for 18 months. She's kept pain and food diaries, gone through varied types of massage, physical therapy, yoga, over hydration, psychology, harder work outs, fewer work outs, endocrinology, more travel/relaxation, less travel/relaxation, did Biofeedback, played with vitamin combos, on pills, off pills, combo-ed pills, updated eye exam, redid all dental xrays, and so much more...
That's how we made our decision to move forward. We've looked at just about everything any doc can think of and it's all been ruled out. The only thing left is the CM.
The downside is it's been 18 months of suffering for her and running from doc to doc, which makes her feel worse. Flip side: all of us feel as if there is no other option but surgery. My daughter, husband, the NS and I are all on the same page now.
But yeah, as a mom, it's so darn hard :(
Sorry to hear that...have you scheduled a date? Im interested to see if it helped and how she recovered..Best wishes for great health :)
Thanks. Consult with NS this month and it's my understanding we'll schedule then. Sometimes though, things do go as smoothly as we'd like and the docs (unknowingly) cause way more problems than we need. You just take it as it comes :)
We had an appt with NS, who recommended the surgery, and then saw a Neurologists who specializes in the cerebellum. We plan to wait it out and see how the Fall goes, if she can make it through Varsity Field hockey and school all day, it will be a good sign. My daughter is soooo annoyed with all the appointments also. They do not realize that we are trying to rule out as much as possible to make things better for them overall. :)
but CHOP is a great place for a 2nd opinion. Our NS is Dr. Sutton Chief of Neurosurgery. I am also nervous about Alexa starting school in September not knowing if she can make a whole school day so I know how you feel. I am happy to share my experiences with you, and feel free to email