Brainstem compression and EDS
Donation protected
I have EDS and brainstem compression from a 'bent brainstem'.
Imagine being kicked in the back of the head and that "kick" never subsides. It's constant!
Between migraines, daily headaches, widespread body pain, vision, stomach, intestine, heart, and other issues I'm in A LOT OF PAIN and have been all of my life, but as of 2013 I'm signficantly worse!
I feel like I'm running a marathon with the flu while I have vices squeezing every part of my body. It's overwhelmingly exhausting!! If I knew what death felt like I could probably compare it to that.
As of April 2017 I am no longer working, and not by choice. This go fund me was set up in hopes of receiving donations for a surgery I really want and desperately need! Now, things are more complicated and dfficult with zero income, 2 boys and a house payment.
The main issue is from the brainstem compression/ventral compression, along with EDS, CCI, CFS, DDD, TMJ, MCAD, Spont CSF leaks, POTS, dysautonomia,...plus
Specialized surgery needed that only one doctor is willing and capable of doing, who also understands EDS. (Ehlers Danlos Syndrome which is a connective tissue disorder). He's my only chance. Cigna refused to cover the surgery telling my 2 surgeons and my doctor that "ANY" surgeon can do my surgery, but the technique the others do is the wrong procedure for me.
The tip top of spine (odontoid process) inside my head is poking into my brainstem causing multiplie issues. That is what can be fixed by pulling my head away from spine, basically. As far as the bent part, that isn't fixable, but the surgery will significantly reduce several issues.
I look normal and healthy, but I'm suffering more than you can imagine.
I had been wearing neck brace 24/7, including having to sleep in it between Dec 2014 to April 2017. Knowing the brace was going to jack my neck up, which it did, the alternative of having to wear it was a better option.. My only relief (some) is laying down. Now my neck is really jacked. ugh
I also have a liver enzyme deficiency meainging can't metabolize pain meds so I have to suck up this daily chronic pain the best I can without any pharmaceutical relief.
Thanks for reading my book ;)
Imagine being kicked in the back of the head and that "kick" never subsides. It's constant!
Between migraines, daily headaches, widespread body pain, vision, stomach, intestine, heart, and other issues I'm in A LOT OF PAIN and have been all of my life, but as of 2013 I'm signficantly worse!
I feel like I'm running a marathon with the flu while I have vices squeezing every part of my body. It's overwhelmingly exhausting!! If I knew what death felt like I could probably compare it to that.
As of April 2017 I am no longer working, and not by choice. This go fund me was set up in hopes of receiving donations for a surgery I really want and desperately need! Now, things are more complicated and dfficult with zero income, 2 boys and a house payment.
The main issue is from the brainstem compression/ventral compression, along with EDS, CCI, CFS, DDD, TMJ, MCAD, Spont CSF leaks, POTS, dysautonomia,...plus
Specialized surgery needed that only one doctor is willing and capable of doing, who also understands EDS. (Ehlers Danlos Syndrome which is a connective tissue disorder). He's my only chance. Cigna refused to cover the surgery telling my 2 surgeons and my doctor that "ANY" surgeon can do my surgery, but the technique the others do is the wrong procedure for me.
The tip top of spine (odontoid process) inside my head is poking into my brainstem causing multiplie issues. That is what can be fixed by pulling my head away from spine, basically. As far as the bent part, that isn't fixable, but the surgery will significantly reduce several issues.
I look normal and healthy, but I'm suffering more than you can imagine.
I had been wearing neck brace 24/7, including having to sleep in it between Dec 2014 to April 2017. Knowing the brace was going to jack my neck up, which it did, the alternative of having to wear it was a better option.. My only relief (some) is laying down. Now my neck is really jacked. ugh
I also have a liver enzyme deficiency meainging can't metabolize pain meds so I have to suck up this daily chronic pain the best I can without any pharmaceutical relief.
Thanks for reading my book ;)
Organizer
Tanya Tanya
Organizer
Edmond, OK