#syringomyelia

I do not have Chiari Malformation (which is where the skull is too short to hold the brain so that’s why the syrinx forms) which is the main cause of syringomyelia in both humans and animals. I am in the very rare percentage of an already extremely rare condition.

This is a degenerative/progressive condition that is almost impossible to recover from.

It is caused when there is a fluid filled cyst inside your spinal cord. This pushes nerves out in all directions which causes nerve… it’s not quite damage, but it acts like damage. My nerves translate most forms of heat and warmth as painful, as well as causing extreme bowel and bladder pain that feels like ants in my bowels and a lead balloon in my bladder. It’s very painful.

I have this cyst/syrinx (the term syrinx is the term for a cyst in your spine itself) in the exact same spot that my brother had several tumors, except his were on the outside of his brain stem/spinal cord, and mine inside. This means that his was operable, while mine can only be operable under very specific circumstances. We both see the same neurologist and he is very intrigued about how both our conditions were formed in-womb and legit looked like he wanted to study us when I first met him lol.

The operable conditions are when I have a 100% chance of going paralyzed because the conditions is pushing on the right nerves and they stop reacting entirely. The reason that this is the operable condition to remove the syrinx (which isn’t so much removing it as… popping it… which also means it can grow back…) is because that surgery itself has a 50% chance of paralysis as well. So, 50% chance of keeping from being paralyzed vs a 100% chance of being paralyzed, means that in that case the surgery wins.

I take gabapentin 4 times a day, every six hours, 100mg for every hour of the day. Gabapentin is a nerve medication that peaks in usage around 2-4 hours in, and after 6 hours it starts to leave your system. Which is why I went from 8 hours for 800mg to 6 hours for 600mg. Because the meds always wore off before I could take the next dose and left me in pain again.

Because of my condition I have degenerative muscles. I have a million things to fight here (top of which are a chronic fatigue and allergies that both get me down plus IBS if I eat something wrong oooof) but because of my conditions I can never hold a job outside of the house. I can barely attempt one in the house too. Im working on starting my own work with my preferred craft and my father supports me (in both love and finances but we live together so it’s not hard) because that’s probably gonna be the only way I have my own income in life. I work with fiber, wool mostly, making and using yarn. Mostly making. Mixing the fibers together on expensive equipment that i waited so long to save up for. I have a lot invested in it. It’s one of my special interests too, so it’s really nice to have that as work. Dad is disabled with special interests too, so he gets it.

Because of all of this, I’m actually in a program slightly more… intense, than PT. My town is a college town and in the college (the gym of which is DIRECTLY across the street from my apartment I’m super lucky with that) we have a program called Wellness Elevated. This is where you get a full semester’s access to the gym for the college/public (which is separated from the gym across the building which is for sports kids so there’s no fighting over room it’s smarter) where they give you a personal student trainer in the sports fitness program. These students are training to tailor a routine to each person’s needs. This program got me from low mobility and constant backaches to mid-low mobility. I can function and even leave the house at least half my days now. I’m even hoping to just. Go outside. During this summer. Bring a backpack with emergency meds and stuff and go to the park and stuff.

Sometimes (and I know this is connected cause other people with syringomyelia say this too) I have off days where I drop things CONSTANTLY. Like, there’s this weird ass signal in my brain that keeps opening my nerves or something. It’s strange and none of us know why it happens, but we all agree it’s like our brain isn’t sending the right signals that day. It’s wild. The muscles and such are fine, the hand just keeps opening to drop things.

I’m asexual and consider my libido to sort of be an annoyance more than anything. I am on several pills that destroy sex drive and that shit’s godly. Just wreck it I’m done, I’m bored, I’m over it. My pills are not for those that actively like and want sex. I am on so many pills and every new pill I get further from the norm and I love it. I know others hate it but I’m delighted not to be there anymore.

I also have autism, OCD, anxiety (which I was informed that OCD is an anxiety disorder itself which means that’s a given, and not that anxiety is a biproduct of OCD. Other way around.), ADHD, mysophonia, pica, and a few other scattered issues. I give the therapists my list, and they give me concerned looks.

September is chiari malformation awareness month. Just a few things about one of the conditions I have. I wasn’t diagnosed with it until I was 39 but I was born with it, until then I was told that I had a range of different things. It wasn’t until I lost the use of one side of my body + I had an MRI scan. Some of the symptoms I have are: severs headaches, neck + shoulder pain, balance…

Paola Bonett is a beautiful, 30 year old model from Colombia. She participated in several fashion shows and photo shoots. She graduated in journalism and communication.

I'm already noticing some changes! I can now swallow again without difficulty, my pupils dilate symmetrically, I can burp again?? Do you have any idea how annoying it is to not be able to do that ??