Chiari Online Support Group

Feeling sick 🤢


#1

Hi :blush:. Does anyone know why my memory is so bad? If it’s my Chiari I’m confused as I thought memory was a hippocampus thing and Chiari is a lower brain thing … and if anyone can tell me why I feel either drunk or hungover all the time I’d love to know. I say the most embarrassing things and just keep on digging some times. Is there anyone on here from the UK? I’d be really interested to know your experiences and how our NHS treat symptomatic Chiari? :pray:


#2

Hey Jassy,
Memory maybe a hippocampus thing, but chiari is a brain thing. And lets face it, it’s all connected. And in my opinion same with the drunk/hungover feeling.
Chiari can put pressure on other areas of the brain and it can all have a flow on effect. There is not much space within our skulls, so when one thing moves or changes position everything else gets moved around too.
I have an issue with the fluid not being able to get out of my skull called hydrocephalus and at times have very much similar sensations of being drunk and the same with saying the wrong thing at the wrong time. People say when you are in a hole, stop digging. Ohh not me. I think I’m digging myself out of the hole when in reality I’m actually digging myself further in. DOH. I must say I have learnt that it’s better for me at times just to keep my mouth shut, at least that way I can’t be saying the wrong thing lol.
As for treatment there can be lots of variables and you would really need to speak to a neurosurgeon. Some may say ‘wait and watch’ same may say ‘operate’, but with many neurosurgical procedures each dr may have their own opinion.

Merl from the Moderator Support Team


#3

Thanks so much for replying. I’ve never joined any kind of ‘group’ before and, although this isn’t the kind of group I had aspired to be part of lol, it really helps me not feel so overwhelmed knowing that it’s not just me. How lovely of me to be happy others are suffering too :sunny: :joy:. Anyways, my ‘big day’ looms, on the 13th (Sunday), I’m up for my brain scan and full spinal MRI, I guess I’ll leave the wig buying until I get those results :wink:


#4

Ohh believe me I know that feeling like ‘Phew I’m not the only one’.
Ben’s Friends has around 50 different communities for all sorts of rare conditions and I can tell that “Phew” moment is a very common reaction. Just to know we are not alone can be such a weight lifted because they can all be so isolating. I don’t think we are so much happy others are suffering but more that there are others who can understand our suffering and that in itself shares the load.

Merl from the Moderator Support Team


#5

I got my brain scan results today … 12mm Chiari you 1, pressing on my spinal cord. Got an urgent referral to Neurology. I’m guessing I’m going to be getting ‘the surgery’ :exploding_head:


#6

You 1 meant type 1 sorry!


#7

My recommendation here is to wait until you have seen the neurosurgeon. They should give you their recommendations, from there you can make plans. Try not to get to far ahead, I know how difficult this can be. I do not believe that anybody in this situation doesn’t think way ahead. But until the neuro provides you with ALL of the relevant information, making plans can add premature stress at a time that you are probably already stressed to the maximum. The waiting for an appointment can be damn awful with all of those ‘what if’ question creeping in but as I’ve said before…

“…As for treatment there can be lots of variables and you would really need to speak to a neurosurgeon. Some may say ‘wait and watch’ same may say ‘operate’, but with many neurosurgical procedures each dr may have their own opinion…”

You REALLY need to see the neuro’s BEFORE making any decision.
Best of luck with it all and please keep us informed of the recommendations.

Merl from the Moderator Support Team