#papilledema

[shyyycatsblog]

Good news everyone!!

I'm in remission!! My papilledema is gone which means my shunt surgery worked! There's no more pressure behind my eyes, so I won't lose anymore of my vision!! 🥳

[ginstermotte]

"Do you see my vision" I have a fried optic nerve bro I don't even see my own vision

[karistina]

Rare Disease Day 2022: Fewer than 1 in 2,000

It’s Rare Disease Day again. A disease is rare when it affects fewer than 1 in 2,000 people. Lucky me, I’ve been affected by more than one…

I wrote this last year. I didn't have the energy to write up something new for this year, even though I have at least one new rare disease diagnosis, possibly more than one. (I'd have to look up whether or not some things are considered rare.)

Please read and spread the word about rare diseases! Feel free to comment/reblog to share your own rare disease diagnoses.

[tophsbiggestfan]

oh my god oh my god oh my god, i’m going to cry

WE FINALLY HAVE AN ANSWER!!!! An entire week later, it turns out all my research was for naught, but it doesn’t fucking matter because we know what’s wrong with him !!!!

Turns out, his cat had a bacterial flea infection. Normally harmless to both cats and humans. He just had a weird reaction to it; explaining both the swollen lymph node in the groin (because all his flea bites were on his leg) and the papilledema. Well, that doesn’t really explain it because it should be harmless but the doctors diagnosed it; they’re going to pump him full of antibacterials and send him home and hopefully i’ll be able to hold him again by sunday night :)

also! This whole ordeal actually inspired me to look into being a hospital lab scientist. I’m already on a microbio track in university, so i wouldn’t have to change anything i’m doing and I think it might be a good halfway between being a doctor and getting to help people, but also not spending all that time and money into becoming a doctor and still having time to have a family as well. 

As long as J comes home safe, this whole ordeal might have been beneficial. I’m so happy guys. Thank you to everyone who read and supported and prayed. 

I’ll let you know when he safely comes home!!

[mypotsielife]

LIFE UPDATE:

So, I have had a headache for three weeks straight now. Always constant. Never gone. However, varying severity of pain. Sometimes it's only a 3. Other times... well. I have my new definition of "10". It makes me shake and puke from it hurting so bad.

My CT came back clear. So my primary sent me to a neurologist. Who at first thought viral meningitis. But. No fever, my white count was fine. Then during the initial examination he thought he saw papilledema, which made him think maybe it was psuedotumor cerebri/intracranial hypertension. Too much spinal fluid.

So.

He sent me to an eye specialist. Who said "well. One eye measures a 3 and the other a 3.5 so maybe that's why he thought he saw papilledema, but I wouldnt classify it as that".(also fun fact I have a hardcore phobia of eyes and eye doctors and had a panic attack and my mom had to hold me in a headlock like I was 5 just so the guy could examine me 🙃🙃).

So back to the neuro. He scheduled me for a spinal tap. I'm like okay 😎 I've got this. I work in healthcare. Ik what's gona happen. This will be fine. However, my anxiety didn't play night and I cried so much before I even got on the table 🤦‍♀️ the lidocaine hurt, but honestly I've had dentists cause more pain 🤷‍♀️ BUT WHEN THEY WENT TO ACTUALLY INSERT THE SPINAL NEEDLE my bro hit a nerve. Intense sharp pain shot down my back into my toes and then both my legs went numb 🙃 it only lasted for a bit but long enough for me to be convinced I was paralyzed. Then, my spine wouldnt release the juice 🤦‍♀️ my nurse said she had been doing this for 20 years and it was literally the longest tap shes ever had to do. it's only supposed to take like 20 mins. 30-45 if it drips slowly. MINE LASTED TWO HOURS. Two hours worth of spine in needle, my arms going numb from the position I was in. And finally they were like okay well we are going to have to roll you to your side to see if we can get more fluid, because you've stopped dripping.. I'm like 😅😅 kay 😭 by this time the majority of the lidocaine had worn off and I could feel a great deal of it.

Lemme tell you. Tryna roll with a huge freaking needle in your spine is not fun 🙃 however, it did the trick. Then. He was like "I'm not gona lie. The majority of your anesthetic has worn off. But I need to take this needle out. Dont tighten your muscles just relax." And my bro pulled that needle and I screamed like a baby 😅😅😅😅 I felt so bad for acting that way cause I know it was probably a bit excessive but. Fudge a fudge. It hurt like a bad word that I dont use 🙃😅 then they get me back in bed. For the whole "lay flat for 4 hours" goes fine and dandy. I sit up to go home, and my legs go numb again 🙃 at which point they told me the nerves were angry from being poked with needles. So ya know. That's cool.

Also I learned a lot because 2 hours of not being able to move, induced boredom. And I work in healthcare and find it fascinating. So I made them show me the manomometers (measures opening spinal pressure). They showed me my spine xrays and how to read it. Then the doc was like "okay so if you were the doc and trying to determine with csf sac to aim for, which would you pick?" And the one I chose was actually the one they had used. So. A+ for me. Haha anyway.

My opening pressure was only an 8? So. Probably not the psuedotumor cerebri / intracranial hypertension. But that also leaves me with???? Why the heck does my head hurt so bad???? My next neuro apt is Monday so hopefully they find something out with all the labs and csf tests they ran. Also. Enjoy my hospital selfies, a pic of my spinal fluid, and my bandage (I told them I was severely allergic to adhesive. So they were like "okay no bandaide" and instead used gauze and tape. Which is still adhesive 🤦‍♀️ which I realize they still had to bandage but gosh dang. Hives around the insertion sight is not fun).

[samanthairis]

I cut my hair due to depression. And dyed it purple to feel normal again.

I havent been happy in a few months. Depression hit me hard. I almost lost my vision do to a condition i didnt even know i had: papilledema. I spent 3 days in the hospital and got the extra fluid drained from my brain. The only thing i was able to control was my hair.

[kionishine]

Do you ever just..want to run away and never look back? Take the things that matter, the things that really, truly matter, and disappear to start a life you can actually stand? 

On a positive note, had a neurology appointment today and got permission to stop taking that awful Topomax. They’re going to monitor my papilledema over the next six months to see if there’s any change, or if I start showing more symptoms of any known diseases or disorders. So far we know it isn’t cancer, it isn’t a brain tumour, it isn’t psuedotumour cerebri. My brain MRI was completely clear. My lumbar puncture was completely normal. My back MRI was completely clear. They did an ultrasound of my optic nerve, which came back relatively normal, except for the swelling they had noticed six months ago. I have migraines and headaches, but I’ve had those my entire life. So, now it’s hurry up and wait to see if the swelling goes down, or I start getting vision loss or distortion. 

Hopefully they can discover something that would cause the scans to be so abnormal, and hopefully it isn’t something too terribly awful.

[shyyycatsblog]

So I found out today that the black spot in my vision is officially permanent and that if my medicine doesn't start working again at a higher dose, then I will need a stent/shunt placed in my head. Brain surgery scares me so much, but it's impossible to function every day if I don't somehow get my head pressure managed 😞 send me positive vibes and well wishes pls, it sounds like I might need it 🖤