Chiari Malformation

[Cindy-Lou Who]

Has anyone been diagnosed with Chiari Malformation?

I was diagnosed with this in June this year after suffering for months with horrendous headaches, loss of vision and dizziness. My GP has put me on a cocktail of medications which aren’t really helping and I’m waiting to be seen by a Neurologist.

I’m wondering if anyone has had any operations for this and how your recovery/head as been? What medications are you on and is there anything that you think, medication wise, has really helped?

 

[Quattro formaggi]

Has anyone been diagnosed with Chiari Malformation?

I was diagnosed with this in June this year after suffering for months with horrendous headaches, loss of vision and dizziness. My GP has put me on a cocktail of medications which aren’t really helping and I’m waiting to be seen by a Neurologist.

I’m wondering if anyone has had any operations for this and how your recovery/head as been? What medications are you on and is there anything that you think, medication wise, has really helped?

Although I don’t have any experience of this I’m so sorry to hear you have this horrible condition and hope they are able to do something for you soon. X

 

[Dancing_in_the_dark]

I was diagnosed when I was 21 and given absolutely no information about it other than it was the reason I suffer migraines. 16 years later I’m now incredibly unwell with it. They now know I have a syrinx in my spine but tbh I don’t feel I’m being given great care as I’m constantly told my symptoms aren’t right and not related. I struggle to walk, I’m constantly dizzy, I suffer a constant pressure headache at the back of my skull like it’s being held in place with a vice on a wood bench. I get sever pins and needles down both arms and legs. I faint regularly, currently about 2/3 times a week. I am finally getting the migraines slightly more controlled, it’s a complete different pain to the pressure headaches. I can’t blow my nose because of the pressure, I can’t, to be blunt, strain on the toilet either. But I’m apparently fine. I’ve had to stop working and I now only leave the house to go to medical appointments, I’m too scared to leave the house any other time as I’m scared of fainting.
There is a Facebook group, chiari malformation uk with lots of people and advice. Many people have had decompression surgery there and talk about their experiences. Worth having a join to see what you can find out as there isn’t great information out there tbh. Please don’t think it’s all doom and gloom. I’m having it bad but that doesn’t mean you will too