This is Mason. He just turned 19.

He should be driving and have a job, maybe he'd be in college, and he'd definitely be looking forward to adulting.  Sadly, those things are pretty unlikely to happen anytime soon, if ever. 

Mason suffered a traumatic brain injury at 9 months of age in a vehicle related accident.

 Amazingly, he recovered well and became an extremely active child... maybe a little *too* active as his behaviors and impulses were incredibly challenging. He always had lingering effects from the accident, though, including hydrocephalus. But he got a shunt placed and again seemed unstoppable. 

At age 15, he broke his hip in a fall, and at age 16 he had a total hip replacement which has caused his right leg to be almost 2" shorter than his left. He has bad arthritis in both hips now and still uses a wheelchair for big outings.  

Also at age 15, he began to see an endocrinologist because he was not growing AT ALL. Turns out, thanks to the accident, his brain produces zero growth hormone and his thyroid is not working right. 

At age 17 he started growth hormones which require an injection every single night (he will need injections daily for the rest of his life). He grew rapidly and finally went into puberty, though his bone age at 19 is still that of a 14 or 15 year old. 

Fast forward to this year when all seemed well until he started having severe upper back pain and then a headache comparable to a migraine which has lasted for 4+ months straight with very little reprieve no matter what medication has been prescribed. He has seen neurosurgeons, neurologists, ophthalmologists, and neuromuscular specialists, and the family doctor. He has been to the ER for the head pain at least 4 times.

 I finally requested an MRI, and it turns out Mason has what's called a chiari (key-AR-ee) malformation and syrinx (a fluid filled cyst in his spinal column). The chiari is basically the base of his brain (the cerebellum) being pressed out of the skull, tearing apart the spinal column and blocking the flow of cerebral spinal fluid in the process.

The syrinx is pressing against the nerves of his spinal cord and causing not only intense pain, but loss of function in his hands for now.  Learn all about his condition here  

My formerly strong boy now has atrophied hands like he's 91 instead of 19. He has no strength left in his grip in either hand because of the syrinx. 

 Every single moment of every single day is filled with pain. Between headaches and muscle spasms ripping across his upper back, Mason has expressed to me more than once that he'd rather die than keep going through this.

Prescription medications only moderately help, but with the opioid crisis, it's even harder to get any level of functional pain relief at home. We drive an hour one way to an ER which is equipped to handle his complex medical history and can administer intravenous medications to help when it becomes too much for him. 

I've been reading about alternative pain relieving remedies for quite a while, and after asking in chiari support groups about their experiences, it seems there are some really viable options to help manage Mason's pain. Some of these are neuro chiropractic, cranial sacral therapy, and some... herbal remedies

Unfortunately, alternative treatments aren't covered by insurance, and the costs are prohibitive for us. With all the time I've spent at appointments and in the hospital with him, I'm missing a lot of work. With all the rain we've been getting, my husband hasn't been able to work as much, either.

Mason applied for disability 18 months ago but was denied. His appeal hearing is finally scheduled for October 3rd, but even if he's awarded disability, it could still take many, many months for him to receive it.

So I'm asking you to please help. Anything you can give will be deeply appreciated. He deserves to live life like a 19 year old rather than a 91 year old.

Even if you can't give but would like to follow Mason's saga as we move toward decompression surgery and beyond, please let me know, and I'll add you to a closed Facebook group dedicated to all things Mason (search Mason's Hip Trip).

Thank you, Teresa and Mason