Chiari & burning leg pain in 12yo

General
1

I havent posted in a long time…My son has had a further decline in his condition. We have tried for almost a year now to medically manage his headaches & other complaints without good resolutuion.
Brian has had a constant headache now for past couple of months…states it never goes away. He is having MrI of brain & entire spine later this month & then are going to pursue 2nd decompression surgery. a year ago he was 23mm herniated.
Now my son has a new symptom… When he stands up… maybe for only 5 minutes both his legs turn bright red and he gets white blotches all over his legs. He complains of an intense BURNING PAIN. He has to immediately sit down the pain is so bad. the skin blotches & redness only goes away after he sits down. this has been happening constatntly for the last 10 days.
Does anyone here experience that or have any idea what it could be?? when i mentioned this to his headache doc, i just got a blank stare.

Any input greatly appreciated,
Brian’s mom

2

Does he have Syringomyelia with that? I do and many times they go hand in hand. That could cause him to get that. Sports and high activity would put some emphasis on that burning sensation.

It should be able to be diagnosed as easy as just getting an MRI of the spine. There are the different areas though of the spine, and it would be important to let the doctor know exactly what area. Generally, they don't give MRI's to whole spine, cost, waste, etc. They might to a child. Hope this helps.