Checking out a diagnosis?

[JanePendry]

I have a permanently clicky gratey neck, just as described here, moderate but permanent  duzziness, occasional pressure in ears, no headache but occipital bone feels clamped. If I too my head back feel pressure at the base of my occipital bone. Also nausea, and proper chronic fatigue. I have been diagnosed with ME/CFS but had symptoms including exercise intolerance and dizziness since childhood. So no sudden onset.

Now I haven’t been diagnosed with a chiari  malformation and the only reason I know about it is that my sister’s King Charles Cavalier has one. He take garbantin and it works for him!

But I read about a doctor with ME/CFS who was diagnosed with a Chiari malformation based in his interpretation of his symptoms. He had similar symptoms to mine. But I may as well have a label saying ‘malingering hysterical hypochondriac - do not heed’ on my forehead so wary of going to a doctor. On the other hand if I don’t return to working at least three days a week I may lose my home.

I have been to an osteopath and Chiropracter and been clicked every which way with little relief.

A part of me thinks it may be worth checking out and risking the shameful treatment by the GP. But it seems such a rare condition so wonder if you would be kind enough to advise.

It’s judting reading this thread sounds so familiar.

How did you find out about your condition, and am I just indeed a malingering hypochondriac.

JP

[JanePendry]

Thank you. I’m in Oxford England. I have private medical care but need to read through the booklet. Thank you for taking me seriously and offering support. Might be wrong but seems worth checking out. The Chiropracter did not click my neck however. Hope she hasn’t make it worse. Certainly don’t feel better.

[selmaS]

There is a list for the UK, The Ann Conroy Trust that has Chiari specialists.......if you can't locate the list let me know.

[MattMarshall]

When I was first diagnosed with chiari 1 malformation in June of 2008, 9mm descended, the young neurologist who gave me the diagnosis completely dismissed my concerns about pounding headache when coughing, laughing, etc. Migraines, serious bouts of neck and upper back pain, etc.

She told me at the time that my tonsils were not descended enough to be a problem.

I took her for her word and went on with life for about a decade dealing with those symptoms until I suddenly started having problems with numbness and tingling in my fingers and toes, dizziness, vertigo, worsened tinnitus, and more.

This time around I found a neurosurgeon that specializes in chiari malformations at the University of Michigan. He had me get updated MRIs of my head and neck, finding further descent, diminished csf flow, and a small syrinx. I have my first appointment with him to discuss my options in a few weeks.

So, long story short, from my first go around on all of this in 2008, I totally know how it feels to have my symptoms, emotions, etc. dismissed out of hand by a doctor. It left me feeling belittled and frankly a little silly that I was ever even worried about what I'd been experiencing at the time. I got over it and moved on, but if I'm being honest, I'd now have to say I feel exonerated in a way to have someone who specializes in the condition take me seriously this time around.

[selmaS]

That valadation is a double edge sword.....it's fantastic to hear what it is, finally and yet, not something we want to have.....but again to know, it's not just us being hypochondriacs . Find the right Dr is key ! Glad to hear you finally got someone that is knowledgable and able to help. So many of us have had a similar experience with being dismissed.

[MattMarshall]

I could not agree more selmas... On both the double edge nature of finally getting to the bottom of it all, and then also on the importance of actually finding someone who has experience in this field. Thanks!

[selmaS]

Hi and welcome to the Chiari forum.

It is sad that so many of us are made to feel the way you do,that we should have a label indicating our hypochondria so Drs beware! And many also are made to feel we need to be wary of Drs and the reason is we have been to far too many that do not know, understand or believe that Chiari not only can, but does  affect us and we need help.
Please do not go to a chiropractor as it can worsen your condition....especially if you have not had MRI's of your full spine to know what is going on, and how being manipulated like that can possibly hurt you.

You want to research Drs in your area or an area you can travel to that is a true Chiari specialist.
We can help with a list of Drs, depending on where you are for you to use to research and find the right Dr for you. Let me know where you can travel to as there are not specialists all over.