Thank you so much for this. My son had Chiari surgery at 14 and went downhill afterward. Bed bound for a few years with a constant severe headache. Oddly, his severe headache entirely disappeared once when he needed an anti coagulant to unclog his port, the jugular compression description now makes that make sense. 5 years later he was finally diagnosed and treated for a CSF leak. His daily level 10 headache went away but he still deals with a lot of headaches and neck issues. If he bends his head back he’ll have Neuro issues for a few days, stopping things, tripping, etc. he also has EDS and PANS. He’s 5 years into ivig. That with the blood patches have given him his life back although he still struggles. Thank you for all your research and dedication. No one should have to go thru what he’s gone thru ti get treated for all of this and there just aren’t enough drs willing to help.

thank you

How common is it to have a combination of the above? The UK is so far behind whilst I’m left struggling adding more neuro symptoms as the years pass

WHAT ABOUT HORMONES

I have eds and chronic daily cluster headaches and migraines with occipital neuralgia. I do now wonder if it's more of a chiari or instability issue as my head is sooo heavy most of the time and and cough, etc, sets me off.

@UKLady

3 жыл бұрын

@Sharon Kay Summerford thank you so much.

@mandarijntjespunch

2 жыл бұрын

Please check out caring medical neck Center in Florida! They can and will help!