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New to Chiari and need help please!

Posted , 9 users are following.

torigrace
torigrace

Hi Everyone,

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

Difficulty Swallowing

Dizziness and light headedness 

Eyes sensitive to light

Eye sight can be spotty / fuzzy

Clumsiness

Unsteady on my feet

Severe Nausea

Loss of appetite

Diarrhoea after eating meals

Constipation from the medication 

Heart Palpitations

Brain Fog, Confusion

Short term memory issues

Insomnia

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. cheesygrin

1 like, 25 replies

25 Replies

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  • htch
    htch torigrace

    Posted

    Hi, sorry to hear you are having such a rough time of it. 

    I am am recently diagnosed (Dec-2015) I have chiari but no syrinx or hydrocephalus. My main symptom is the cough headache / valsava headache which are terrible but very brief thankfully. I have other symptoms like shoulder / back pain, burning pains in arms and legs etc. 

    My NL did a CSF study to check the flow, this confirmed flow restriction which he says are causing my symptoms and if left will most likely cause further damage and possibly lead to a syrinx or hydrocephalus developing and have therefore Been offered surgery

    i would ask for a referral for a second opinion from your GP this is your right

    • torigrace
      torigrace htch

      Posted

      Thank you htch for your reply! That has given me a little hope. Did you see your MRI? I was just wondering if someone like you had a similar herniation and was offered surgery. I attached my mri's in my original post.

      Thanks for taking the time to write smile

    • htch
      htch torigrace

      Posted

      Yes I did, I wasn't told what the mm was but I have my MRI, I have added it below. The issue for my surgeon was not the size but how "tight" it was all packed in there. This is causing the cerebral spinal fluid not to flow freely. 

      It's a scary time just after diagnosis but stay positive. You have some great responses above with some really good advice 

    • torigrace
      torigrace htch

      Posted

      Thank you htch smile praying that you get the perfect treatment you need and feel loads better soon smile
    • torigrace
      torigrace htch

      Posted

      Hi htch, I have just been reading through the posts on the forum and I saw a discussion you participated in a month ago, you mentioned you had a private NS in the midlands? I live in the Midlands too and I was wondering who you tried and who was the most helpful? If you'd rather PM me that's fine too. Trying to find some candidates for 2nd opinions. smile
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