06/07/2026
Sorry its a long one not war and peace yet.📖
Hey everyone. I want to give a proper update on what’s been going on with my health lately.
For 2 weeks i was doing really well then when the heat came i went down hill over the weekend i went away.
Last week, I started getting really bad ear pain, weird noises, and muffled hearing. The hearing has thankfully gone back to normal, but the pain hasn't. It honestly feels like my ears are about to explode, and it’s definitely not just an infection. I was struggling to control the pain and couldn't even eat because I was being constantly sick, so I knew something wasn't right. Plus my walking is still dodgy which can be another symptom. Thank god as I have caught it early.
I ended up in Birmingham A&E twice, which was an awful experience. All they wanted to do was a lumbar puncture—which is a really serious and risky thing to do to a Chiari patient! Thankfully, they eventually just did a CT scan.
After a bit of a conversation with my surgeon's secretary 🙄, she agreed to email him while he was away at a conference. Fair play to him, he is absolutely amazing. He rang her straight away and told her to get me an appointment anywhere possible on Monday so he could see me.
We went through the scan I had done the day after my op, alongside the new one from last week. They found a few pockets of fluid buildup and are concerned it might be hydrocephalus. Basically, the cerebrospinal fluid (CSF) that normally protects the brain, removes waste, and provides nutrients isn't draining properly, which causes a buildup of pressure. This totally explains my symptoms, including the ear pain and my issues with walking.
So, what’s next?
This isn't a final diagnosis yet, but here is where we are at:
I’m on a very strong dose of steroids until Friday.
If things don't improve by Monday, I’ll be booked in for a lumbar puncture within 2 days.
If that shows high pressure, I’ll be admitted and will need another surgery the next day to have a stent fitted.
My last surgery i was told today was complicated. My surgeon actually mentioned that out of the 400+ patients he sees a year, he only operates on about 15! Plus, having Crohn’s means I can’t take medications like ibuprofen, which makes pain management, helping with inflammation and recovery so much longer and harder.
Right now, I'm just focusing on positive thinking and hoping these steroids do the trick so my surgeon can give me the all-clear. I am so incredibly grateful for him—he didn't rush the appointment, talked me through absolutely everything and showed me all of the scans, I do have an amazing team in Birmingham and i am really greatful to him.
Thanks for all the support, I'll keep you posted! ❤️
So no wild parties for me this weekend 🤪
Every day is different. One thing first op is have ever had with no infection and how neat it is. 3 weeks and fully healed on the outside. I am happy with it.
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