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So. This is gonna be a very long thread. Please bare with me. About two years ago (maybe one and a half o am uncertain) I was diagnosed with an Arnold Chiari Malformation. (See pictures below) this is where the brain slips slightly to the top of the spine, creating a sort of plug
this in turn caused a cyst to form in my spine, which in then created scoliosis of the spine. Of course I had never heard of this disorder before, as I am sure a lot of you haven’t. I didn’t know any signs or symptoms. Nothing. The only reason I thought anything was wrong was
because of weakness developing in my hand. I put this down to arthritis because my mother has this, and therefore I didn’t go to the doctors about it, to this day I am not sure why I didn’t, everyone told me at the time to do it, but you just put these things off.
anyway, the symptoms started to get worse in my hand, about 5 years ago, I was unable to do up shirts, grip things very well. Again I still put stuff off. Owing it to the cold weather. I would soak my hands in hot water to aid symptoms, believing it would help. It didn’t.
During this time, I noticed my eye starting to droop on the right side, me being a very vain person did not like this at all, my hand, I could hide. My face, my fortune, is always on show. How could I hide a droopy eye ffs
Finally I was convinced to go to the doctor. I think it was just before Christmas I decided to go. I went there thinking it was arthritis, it seemed like it to me. All the symptoms pointed to it. Me being me, and totally oblivious to nosy things around me had failed to realise
until the doctor showed me the extent of the situation in my hand, there was severe muscle wastage on my right hand side. He got a tape measure out and measured my wrists, one significantly smaller than the other. Im not sure I didn’t notice but, there it was.
I sat there in shock, totally gobsmacked I hadn’t noticed this. The doctor sent me away for the usual blood tests and wrote to people he thought could help. I went home, and talked to my mother. Still not understanding fully what was wrong. But still not really worried,
as you know must things can be fixed! It (was) 2018 at that point. Anyway, I get letters from doctors, from different departments who are gonna run tests. One was putting acupuncture needles into my arm and sending electric currents into it check for muscles I’m not sure 
https://abs.twimg.com/emoji/v2/... draggable="false" alt="🤷🏼♂️" title="Man shrugging (medium light skin tone)" aria-label="Emoji: Man shrugging (medium light skin tone)">
Anyway, all this happens, nothing. So I have to have and MRI. Never had one before. I was actually pretty excited, lying deadly still for about an hour, wonderful. My favourite past time. I was in that metal tube for nearly 3 hours. Unable to move. I came out and cried.
But it was done. Over with. I then get my letter asking me to go to the hospital to see a neurologist. Well that can’t be good. Foolishy I went by self. The doctor surprised to see me by myself let’s me in. And beings to talk to me. He has my MRI results on the screen.
He shows me them. He shows me the slipped brain, the massive cyst in my spine. I try to hold it together as he talks but eventually I fail. And burst into tears. I am scared. But I had answers, answers to a question I had never asked. He tells me what is needed to fix it.
Obviously an operation, he tells what is needed. To remove part of my skull to allow the brain to have more space, hopefully then the cyst will move. I go home still in shock. I’d like to point out at this point, I know this isn’t as bad as what some people have going on.
But I wanted to share. Anyway I get home. I am in two minds about telling my mother I don’t want to scare her. After speaking to my friends I finally get the courage to do so. Now it’s the waiting game of waiting for the letter to say when it is. This was about June.
Months go by. Finally I get my letter. My operation will be in February. Brilliant I can get sorted. I have my final consolation with the doctor. He informs me that the likelihood of my right arm going back to normal is small. I still hold out hope. Anyway operation day comes.
Goes well, I awake, he tells me all the fluid is moving into my spine. And that’s great. There’s a fit junior doctor too. I’m ready to spend the night. Here’s a photo of my wound when I get home. STUNNING.
This was a year ago. Unfortunately, it appears my symptoms have got worse. My eye is becoming more droopy, I am unable to use a knife and fork, lift glasses or even open little baggies with me hand. I have to ask friends to help. It is embarrassing watching someone cut your food.
All of this has happened during this period of uncertainty. Today the gyms closed. As some of you are aware I try and go to the gym where possible, however with my hand it’s very difficult and a lot of the time the weight are resting on bone and skin. Very painful.
For a difference in my arms, please see below. No matter what I do. What I try. I doubt I will ever get the muscle back in my right arm. In fact this could get worse.
I try and go to the gym everyday, and do whatever I can. But now they are closing, and rightly so, however my mental health has spiralled. I will never be deemed to be the body perfect gay guy, no matter how had I try. My arm will stop me. It gets me so down somedays,
I wonder if it gets worse, will I meet someone. Of course I meet people all the time. https://abs.twimg.com/emoji/v2/... draggable="false" alt="💅🏼" title="Nail polish (medium light skin tone)" aria-label="Emoji: Nail polish (medium light skin tone)"> but right now it doesn’t seem too bad. What if it gets worse? And I can’t use it at all. I have a follow up on the 9th of April as my symptoms are decreasing rapidly.
2020 was supposed to a good year for me. I wanted to do all the prides, hoopla, and go out as much as I can, just incase it gets worse, and I feel I don’t want to go out. This all sounds very melodramatic but with everything going on I can’t help it.
As I said before, this may seem very insignificant with what is going on right now, and what other people may be going through. But I wanted to share my story and get it all off my chest in one signal (thread) of tweets, as I know some people have been asking recently.
