at a loss!

[Guest guest]

Hi there!

Saw a new neurosurgeon yesterday who specializes in upper spinal

problems. Nice enough guy but am totally at a loss as to what to think

or do.

My latest MRI (of head & upper cervical only) still shows the 7 mm

herniation. It now shows that the tonsils & medulla are mildly

compressed. I went to this neurosurgeon hoping he would be able to give

me a dx or reason for all my symptoms.

Basically he has told me that he is willing to do surgery since my

herniation is 7 mm and I get occipital headaches(he won't do sx for 5mm

or less - leads me to believe that his sole criteria for ACM is the

length of herniation - is this the only criteria?).

He has said that all the rest of my symptoms he's at a loss to explain.

States that he has had a few chiari patients with identical symptoms but

he won't attribute it to the chiari.

It makes no sense to me to have sx due to headaches alone!! I can live

with the headaches, they're not that bad & I can always take something

for them. It is the rest of the symptoms I'm having trouble with & I

stressed that to the nsg.

His response - the symptoms may go away after sx or they may not, but in

the year of 2002 with the present medical knowledge & diagnostic

testing, he cannot attribute the other symptoms to chiari.

I am very healthy, the only thing that has shown up is the chiari. All

my symptoms are neurological. I had a downgoing plantar reflex in Oct,

it is now non-existent. I have hyperreflexia of the knees, decreased

power of my hip flexors, weakness of my plantar flexion, daily

dizzyness, tinnitus 24/7, fatigue, tingling & pins & needles in my

limbs, weakness of extremities, trendelenberg gait & have fallen a few

times, burning sensations & cold spots, palpitations, numbness, pressure

in my head when I lower it, yadda yadda...

My symptoms come & go on a daily basis, no 2 days are the same.

Recently I have been getting muscle spasms around my right eye

(something like a tic) & yesterday the right eyelid drooped (my husband

witnessed it). When is all this going to end or how bad will things

get????? All this has developed in the span of only 11 months!!

I am totally discombobulated (I know I butchered that word!), I feel

like the medical system has let me down. But then am I expecting too

much? Are all these symptoms in my head in that somehow I have

psychologically brought them on? My confidence in my ability to assess

myself is down in my boots!

Should I be getting a second opinion? I know my GP will throw his hands

up at this request & we don't have any ACM specialists in western

Canada.

If I don't have surgery, based on the progression & speed of my

symptoms, am I in for bigger & nastier things?

Sorry this is so long, I am rambling on. Just finished a 12 hour night

shift & have not gone to bed yet. Can't sleep when my nose is all

stuffed up from feeling sorry for myself.

Any input would be greatly appreciated. Articles that support those

symptoms, advice, your slant on it, just anything.

confused & feeling lower than a duck's bum

Sharon