Neurosurgeon said I had a Chiari and then dismissed me. Please help!

[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

[selmaS]

  Related conditions - Syringomyelia...MRI of cervical, thoracic and lumbar spine....Many Drs only check the cervical spine for a syrinx when a syrinx  can form anywhere in the spine.

Disk issues, tethered cord,ICP, POTS,CCI,sleep apnea, Ehlers-Danlos Syndrome,retroflexed odontoid, Hashimoto's thyroiditis.......

Drs tend to rule out conditions with similar symptoms...lymes, lupus, MS....but they may not always check for related conditions to Chiari.

[Alexfoulkes89]

Hey sorry to jump on this post I’ve had the exact same as above my neurosurgeon dismisses chiari he has said he specialist in this type of condition but I have all the above symptoms feel so lost and lonely can any one help me

[selmaS]

Hi and welcome to the Chiari forum.

No worries jumping onto an older thread....only thing is those that posted on it may no longer be active so you may not get the replies you want......

There are many Drs that claim to be specialists for Chiari because they are neurosurgeons....but for me they must only deal with and focus on Chiari and ALL related conditions.....

May I ask what testing this "specialist" did for you and what conditions they ruled out?

[Alexfoulkes89]

I’ve had an mri and that is all and I’ve been told I have chiari 7mm but he doesn’t think this is causing my symptoms

[selmaS]

You definitely need to locate a true Chiari specialist to help you....where do you live?

[selmaS]

  Hi torigrace and welcome to the Chiari forum.

I know it is so frustrating to think you finally have an answer only to be told it is not the issue....BUT it could very well be a related condition as they can cause the same symptoms as Chiari.....

Do look into ALL related conditions and know that Dr you saw was most likely not a true Chiari specialist other wise he would have known to rule those out as well.

Have you reviewed the Ann Conroy Trust's list of Drs?

[torigrace]

Thanks for your message :)
I've been through so many doctors ruling out various conditions, what kind of conditions should I be looking for? Yes, I've been on that list and have contacted the Ann Conroy Trust so I hope to get something back soon!