Chiari malfromation and syringomyelia

Laney47

Hi my son of 14 years of age got diagnosed december last year with Chiari malformation and a large syrinx in his spinal cord,which as affected his left arm and his kneck on the left side with numbness,he had foreman magnum decompression feb this year,but seems to be a lot worse off since surgery,also just been doagnosed with very low memory problems,he's not been in school since December and we did try a phase return in may which wasn't sucessful as he has very poor sleep and can stay awake for 2 full nights,i just don't know what too do to help him he can no longer do any sports or his horse riding abd he won't even go out anymore due too the fatigue 

Chloe_Alumni

Hi @Laney47 welcome to the community! Thank you for taking the time to share this with the community
I understand this must be a very difficult time for you and your son, are ether of you getting any kind of support?
I hope you can use the community for support and if you need anything else then please do not hesitate to ask!

April2018mom

Hello and welcome to the community!! Having any type of AC malformation can be scary. What sort of support are you getting? Have you talked to a NS yet or not? Does he have Spina Bifida by any chance? Hugs. Hang in there!  If I were you I would immediately start looking at support emotionally and financially too. PIP might come in handy. 

Laney47

Hi and thank you yes,we've seen the Ns he was decompressed in febuary this year not much support or not many answers on a lot of things in his mri report,just keep getting told it's nothing,no he doesn't have spina bifida,he's been under a neuro psychologist who recently said he's concerned over his memory test and learning test he did with him,but i havent a clue who to go to about anything,we just keep getting passed around and it isnt doing my son any good,its just been the worse 7 month of my life 

Laney47

Hi Chloe and thank you,I'm still trying to figure the site out ☺ 

Chloe_Alumni

No problem at all @Laney47