Long term readers of this blog will know that I've had some long term health issues. About 15 years ago I was "diagnosed" with an Idiopathic Brain-stem Disorder (a fancy way of saying we don't know what's wrong with your brain-stem). Following my recent neck/shoulder issues I had another MRI(I've had about 7 over the years), this time the MRI report contained an incidental finding of "low-lying cerebellar tonsils". Me being me, I hopped on to google and came across
The Ann Conroy Trust website and found a page which described pretty much the entirety of the past 16 years of my medical history. I went to my GP and requested (read: demanded!) a referral out of area, to a Neurosurgeon called Mr Flint. I'm so glad I did! Today I travelled to Birmingham to visit Mr Flint (he was lovely!), and he confirmed a suspicion that I had held since receiving the MRI report. I have a
Chiari Malformation! Essentially, my brain is too big for my skull and part of the Cerebellum (the cerebellar tonsils) hangs down in to my neck. It explains why I've always been so ill after operations; my poor brain-stem and cerebellum were being squished when I was undergoing anaesthetic! Look away now if you're squeamish. The bit that the arrow is pointing to is the cerebellar tonsils. They should be neatly tucked up inside my skull not hanging down and squishing the brain-stem. Apparently the front of my neck is an issue too, the angle at the front is quite sharp, which accounts for my choking episodes, and puts more pressure on the back of my head/neck. The horrendous vertigo I suffer from is probably related to disrupted flow of the cerebro-spinal fluid!
Fortunately I don't need surgery at this point although that may be a possibility in the future. I don't fancy major brain surgery any time soon! Although nothing has actually changed, my symptoms still remain and I still require medication to get through each day, I feel so relieved to finally have a diagnosis that makes sense! It's a shame it took 16 years and a passing comment in an MRI report to get to this point. Anyway, I'm just delighted to be able to give up looking for answers to this particular problem. Mr Flint left me with a funny thought..."for all the specialists who thought it was all in my head the problem was, it wasn't all in my head, it was in my neck too!"
Catch you soon x
I always think it's best to know things - half the battle won then. Glad you have some real knowledge now - yay Mr Flint:))
ReplyDeleteWe found out about my daughter's Chiari malformation "by accident" when she was just two. The most wonderful neurosurgeon did her brain surgery few weeks later and I'm happy to say that now, at the age of 15, her brain looks perfect and we don't need any more check-ups. So glad you finally have a diagnosis. Wishing you good health and full recovery.
ReplyDeleteIt's great to hear you got a diagnosis, living without one is horrible. Let's hope they can do something to help you now x
ReplyDeleteI can hear the joy in your words by simply having a "correct" diagnosis! We are our own best advocates when it comes to our health. Glad you made the connection. I'll celebrate with you!!!
ReplyDeleteIt must be wonderful to know what's finally wrong, even if it doesn't change the treatment - I think doctors underestimate how stressful it is when you don't know what's wrong with you and every appointment requires a long explanation of 'well there's this, and this, and this...'. At least now you can preface that explanation with 'I have Chiari Malformation' and judge from their reaction how much more detail you need to provide! I hope this diagnosis also helps your mam and Jess with their diagnoses/treatment, even if it's just another thing to rule out...
ReplyDeleteTake care xxx
I don't know whether to say congratulations or not!! I am so glad you a least know wha tis happening to you now, at least it makes life easier because there should be a way forward now. Hugs. x
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