Am I crazy? My NS thinks so

[Guest guest]

Hi everyone

I had my appt with my NS yesterday and it was awful. I had built up my hopes

that something positive would happen and it just didn't. This is what happened -

after reading it please tell me, am I the crazy one here?

Firstly he gave me the results of my CSF flow study and lumbar MRI. He said

the flow was okay around the hindbrain and that he couldn't see any evidence of

tethered cord.

I asked about whether this (the tc scan) could be a false negative result and

he didn't answer my question. So I asked it again and in a roundabout way he

said no, there is no chance for a false negative. He was pretty brusque about it

and didn't want to discuss the possibility of doing further tests to see if I

have TC or OTFT.

I asked him about the symptom when I'm walking and he said he didn't know what

this was or why I was getting it.

I asked about cranio cervical instability adding that quite a few times my

symptoms have come on after something putting pressure on my head / bending my

neck etc, and he said 'your c-spine is fine, it's not unstable'. This is purely

by looking at a static mri result where I am lying flat on my back. Even I know

that this is not the test for instability! Back in July he said I could have a

flexion-extension x-ray and now he says nothing about it. He just isn't

interested.

I asked about EDS and he said 'you don't show any signs of EDS'. This without

testing me or examining my joints for hypermobility. I could be able to tie

myself in a knot for all he knows and he is telling me I don't have EDS.

He went on to say (numerous times) that I am very symptomatic but it does not

fit with what he is seeing on my scan (a 2mm herniation). He said that I have

obviously latched on to this diagnosis of chiari and I have been reading and

thinking about it a lot. Which was a way of saying that he thinks I am reading

up on chiari and convincing myself I have the symptoms. He implied my symptoms

are psychosomatic. The word 'obsessed' was used.

And that's not all - despite me talking to him about my worsening symptoms and

telling him about my symptoms when walking, he said that I could go and life my

life as normal. His exact words were 'you can walk, run and jump around' and

'go, get out and enjoy yourself'.

Then he got his colleague in, who said he thinks I should see a psychologist.

He said 'you don't seem to be coping with your symptoms, but lots of people have

symptoms'. Nice.

They weren't interested in even discussing the POTS symptoms that I get. They

dismissed those out of hand.

And after all that, my NS said that he would 'reluctantly' offer me a

decompression. He said that it might not help me but it might stop me thinking

about chiari because I seem to be 'stuck' on it. Is it me or is that a really

bad reason for doing surgery on someone? Basically doing it just to shut me up?

I declined the offer because I think it's for the wrong reasons, and I know that

if you haven't been properly investigated for TC, CCI and EDS you can end up in

bad shape.

So basically he thinks my symptoms are mainly psychosomatic and he's not

interested in investigating ACM related conditions any further. That was bad

enough but now both my parents agree with him and I spent last night arguing

with my dad about it which was really depressing. I feel like I am the only

person who believes that my symptoms have real physical causes and that the docs

should be investigating me thoroughly for ACM related conditions. Tell me this,

if my mind was inventing chiari symptoms then why would I have had this pattern

of symptoms for over a year before even knowing I had chiari? And how could my

mind invent things like me walking on tip toes everywhere as a child, the fact

that I can't flex my foot and straighten my leg at the same time? More to the

point if the 'my symptoms are psychosomatic' theory is so obviously flawed why

do people believe it?

Who is the crazy one here? Please tell me...

Amy (UK)

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