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Recently after a year of being tossed from GP to neurologist to Chronic Pain Consultant, I decided to pay for a full spinal MRI. It revealed that my tonsils are prominent and project just below the Foramen Magnum. I went and paid to have a consultant with a NS in Cambridge.
He told me that he that my Chiari was not the cause of my symptoms. I was shocked, and he said that I needed to go see a headache specialist.. Please know that this was the first time anyone had told me I actually had Chiari!! I asked him what about the research done on those people who have a smaller tonsillar descent than others, but have severe, life debilitating systems? He dismissed that and me and said that he relied on his own experience. He said I have no syrinx or from what he can see hydrocephalus, do you HAVE to have these 2 things to warrant help or treatment? Can you be symptomatic without them?
I have been confused and frustrated and feeling hopeless.
But today I have awoken feeling like I need to get a 2nd opinion, as I am sure my symptoms are from the Chiari and not just headaches/migraines.
My symptoms below:
Constant Severe Headaches
Intense pain and aching at the back of the head
Pressure behind the eyes and in the head and neck
Severe Neck Pain
Pain in the face (Nerve pain?) and some loss of sensation
Head pain, pressure when I get up from lying down.
Head pain & pressure sometimes when I’m on the loo. Almost like my head is going to explode.
Loss of sensation in hands & sometimes pins and needles.
Some loss of sensation in feet & sometimes pins and needles.
Weakness in both hands and legs. Definite loss of strength.
Nerve twitching, sudden jerks in legs and all over body
Dizziness and light headedness
Eyes sensitive to light
Eye sight can be spotty / fuzzy
Unsteady on my feet
Loss of appetite
Diarrhoea after eating meals
Constipation from the medication
Brain Fog, Confusion
Short term memory issues
Pain gets worse as the day goes on. But sometimes I wake up with pain as well.
I am currently on Gabapentin, Tramadol, Paracetemol and Cyclizine. And they are all making me SO ill but take the edge of the pain sometimes.
If anyone has ANY recommendations of other consultants in the UK or have had similar experiences or even can answer the question of whether I need to have a syrinx or hydrocephalus in order for the Chiari to be symptomatic? I'd be so grateful for anything.
I'm really in the dark, please help!
I'm 28 and I want to be able to enjoy life again. It all started going down hill in March 2015, but before I had some of these symptoms after severe whiplash 9 years ago, which have gotten worse.
I've attached a couple of snapshots from my MRI, I am in NO way looking for a diagnosis from these, I just wanted to know if someone's MRI looked similar etc.
Okay. SUPER Long post. If you've gotten to the end... CONGRATULATIONS AND THANK YOU.
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