I’m more writing this in the hopes that I can get a little information from others experiences due to being diagnosed during Covid so haven’t actually been able to see a neurosurgeon to get any actual specific information or to ask any of my questions yet, I feel very lost and deflated because of this. Sorry if this is a little long…
I started getting symptoms; headaches, increased dizziness in simpler situations and more prominent tinnitus (tinnitus I’ve had for years but assumed it was normal so never thought about it) in March 2020. I called the GP when I had a headache for the third day in a row as that was really unusual for me on top of the dizziness and the tinnitus (dizziness was happening every time I stood up). I was given some pain relief and told to contact them back if it did not improve. The headache eased off, but later in the day I had my first near faint. This prompted the doctor to believe it was anemia, which to me made sense. I also get my fingers and toes turning purple at times which would again make sense for anemia. But due to being in the height of the first lockdown, the GP wasn’t doing face to face contact unless absolutely vital. This continued for about 8 weeks when I had to keep calling back because I was really struggling with now increased number of near faints (and normal blood pressure) and the dizzy spells. I was finally able to get the blood test. Which came back as normal.
This unfortunately rattled me, as 8 months prior a childhood friend of mine had passed away from brain cancer and her symptoms started with headaches. I relayed this to the doctor who was so understanding and said for peace of mind and as my bloods were normal to go for an MRI scan. I was able to get my MRI done within 2 weeks of him requesting it.
The scan came back with the diagnosis of Type 1 Chiari Malformation. I was sent for a 2nd MRI and was told I was being put on the waiting list as urgent to see a neurosurgeon.
Fast forward to early Jan 2021 (7 months after initial diagnosis) I finally receive an appointment in January to see a neurosurgeon at the QE in Birmingham.
6 days before my appointment, we go into lockdown 3.0 and I receive a letter saying my appointment is cancelled, with no idea of when the replacement would be.
Since my diagnosis we’re now coming up to 9 months. I have so many questions and so many things that happen with my body I’m desperate to ask if they’re related, even from when I was much younger (like pars defect and sciatica at age 15).
So I guess, if you’ve made it this far (sorry for the length!) I’m hoping for advice/experiences/information. Obviously I know every person is different and no two cases will be the same but I wonder if you are able to shed a little light, even a candles worth might help me get to the actual light at the end of the tunnel (which keeps feeling like its moving further away rather than closer).
Things I’m wondering about:
Pregnancy. I get horrific head pressure and then feeling very faint when straining, whether that is lifting/pushing something heavy and also sometimes when using the bathroom. Has having Chiari affected how people give birth? Sounds daft but I’m a huge water baby and can’t wait to have my own children and always dreamed of a water birth, but am now concerned that because of those symptoms whether I will be able to give birth naturally. Anyone got any experience with this sort of thing?
Travel. Being diagnosed during Covid, I haven’t been able to travel, but does this impact on people being able to get travel insurance? I have family in Spain and Florida and am now concerned that this is something that will make traveling very difficult, that’s whether symptoms get worse flying due to pressure? Or increased costs in travel insurance?
I have so many more questions but see that this is quite long so shall leave that for another time!
Thank you all for any help or information or advice or literally anything at this point that might help me spiral out of control less would be appreciated so much I can’t quite put in to words.