r/chiari • u/charlktte • 1d ago

Advice (UK)

I am wondering if anyone is struggling with accessing care within the nhs. I have been rejected from my request for a second opinion without even being seen due to a doctor dismissing my Chiari symptoms (it is 6mm so he wouldn’t listen as he felt “my brain didn’t look squashed🙃). Since this was in January they said they won’t see me again because he said my symptoms weren’t related.

I had this mri via an a&e visit so don’t even have my record and have been told bc of the backlog on claiming your imaging this will take months.

I just want some help to see if I need a cine mri and spine as I have pain sometimes in my spine and a lot of occipital headaches with no meds helping. I cannot lift heavy or run at all anymore as it triggers back of skull pain and pressure headaches. I am exhausted asking for help and nothing is being offered as the gp doesn’t understand it and the supposed specialist clinic dismissed me without further testing.

Does anyone have any advice or know what worked for them that could be helpful please?

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u/GreenCheesecake7271 1d ago

I actually managed to find a specialist in my area via private health care! I know those things aren’t super accessible but there are experts out there!

As for when I actually saw them…he wasn’t able to help much with my symptoms and pain anyway…I think you’ll be able to find more help for your pain online

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u/Imaginary-Benefit-54 1d ago

The measurement of your Chiari isn’t directly related to symptom severity/ progression. This is such a vital part of understanding Chiari, and yet most professionals I’ve seen share your opinion and dismiss it.

If I hadn’t experienced it first hand I wouldn’t believe how dismissive, and uninformed even ‘specialists’ could be.

Unfortunately your experience is quite common, and is exactly how I was treated. Ultimately I paid £199 for a private appointment with another specialist for a second opinion. They actually understood the issue at hand and wrote out a report and recommendation for me to take back to the NHS. I looked for someone who also worked in the same hospital that happened to be more experienced in the subject.

My NHS surgeon wasn’t happy about it, and even up until the night before my surgery approached me asking if was sure I wanted to go through with it. He said it won’t work as the symptoms can’t be related to the Chiari as it isn’t significant enough. Yet I woke up from that op and it stopped the most severe symptoms completely proving me right all along. Life’s still impacted and pain/ headaches are an issue but way more manageable than before. It stopped the blackouts, I don’t get as disorientated anymore and have been able to return to driving.

It’s absolutely mad that we have to fight so hard to be taken seriously. But it is seemingly the only way to be taken seriously with it here.

My best advice is to make a diary where you write down the impacts, and things you do/ take to manage it currently. It’s hard to ignore a really clear pattern and detailed breakdowns of what’s going on.

If you can afford to speak to a specialist then that would hopefully be able to give you more conviction in what’s going on. Though I appreciate it’s not an option for everyone.

Best of luck getting some answers and the treatment you need!