The important thing to remember here is that she will get better and that she can have a great life in the future. She can get a good education, a nice job, a family, travel the world, enjoy sunshine, tasty food, good music, parties, boyfriends, nature etc. Life has a lot of good stuff in it and that can be hard to understand when you are just 14 years old. Don't focus too much on the gymnastics, especially not the competitive aspect. She will have a good life.
I sympathize with your daughter and how she must face giving up something she loves. When younger, I figure skated competively before my Chiari was diagnosed and my early symptom elevated. The dizziness and balance issues put an end to my skating. I do not have to tell you how I felt. Your daughter is so young and this must be extremely difficult for her to think about. Selma offered you a good suggestion about coaching. Still, I think your daughter will need a lot of support from her family. Having to let go of a dream of being part of a competitive sport can be pretty heartbreaking. I will pray for both of you and the strength you'll both need.
Yes....there is syringomyelia...which is a cyst like cavity called a syrinx...this syrinx develops when there is a restriction to CSF flow and can form any where in the spine....some Drs only check the cervical spine for them....
Disk issues can also cause compression of the nerves and many of the same symptoms ....so it is good to know if this is also an issue....
Ehlers-Danlos can cause disk issues as well as instability of the cervical spine especially after decompression since they shave some of C1 and C2.....this can create the feeling of being a bobble head...HA's continue and other symptoms...and with EDS we can also have adverse reactions to medications as well as foreign materials...so the dura patch can cause an issue post op if the patient has EDS and something other then their own tissue was used for the dura patch.
Many of the related conditions can cause many if not all the symptoms Chiari does...so it is hard to know what symptoms are from which condition.
Knowing there is a CSF obstruction , and syrinx already are top 2, then you move on to the others...even sleep apnea as that can affect recovery too....
A patient with EDS will also have a slower recovery then those that do not....
She has been seen by neurology and neurosurgery, she's had 3 MRIs which showed the CM1 at 17mm (the CSF study showed decreased CSF flow). After surgery and recovery, we are supposed to follow up again with neurology, just in case there's a lingering migraine component.... Is there more to look into? All of the symptoms she's having right now line up with the CM.
Hi and welcome to the Chiari forum.
We are all different in what we are able to do post op....mainly bcuz some of us do have other related conditions which can cause us to heal slower or to continue to have some pain and symptoms similar to Chiari.
I would think gymnastics are off the table since she could get injured in a weakened area....not saying she would be unable to do it....just she will be more vulnerable to a serious injury.
She may want to look into coaching gymnastics....it would keep her around something she loves .....
Was she checked for ALL related conditions?
Also do post her surgery date on the list your surgery date thread for a Prayer thread to be posted for her....wishing her all the best <3