How do we get our Dr to Listen?

[Guest guest]

Hi all!

I am once again experiencing something I think we all unfortunatly have dealt

with at least once.

GETTING MY DR'S TO LISTEN!

How tough does it have to be and why is it soooo common? It really frightens me

as well as makes me sad when daily one of us has to suffer needlessly...to fight

and beg to be heard and respected.

This puts us in a state of confusion and self-doubt on top of the physical pain.

There absolutely has to be a way for us collectively to pull together in a

productive and positive manner to help ourselves, if not to stop it (which is

probably impossible) at least develop some tools together to know how to better

approach these " professionals " so that they see us as we are, not as someone to

blow off because they don't know about Chiari and related conditions in the

first place.

There has been some interesting talk here lately about " Chiari & how it can

effect personality change " . The post that went out with info about getting an

extended PDF copy, I asked and it was sent to me. It is VERY interesting (some

of it goes over my head haha) but there is a lot we can do to continue to

educate ourselves.

How can we not change? Whether it is because of CSF flow problems, because of

what the tonsils do when they are pressed through the foreman magnum, or maybe

it is attributed to pain,frustration,confussion, or medication, take your

pick....I wholeheartly believe it may be a combanation of all that, whatever the

answer, we do have a point of strength...WE HAVE EACH OTHER! I am eternally

grateful for each of you.

I had my decomp surgery July '09, besides basic recovery and the fact that I'd

had 5 other major surgeries the past year and a half, I was " ok " for about the

first couple months. Then a lot of symptoms started to return, " H " eadache

especially in back of head/neck radiating up in head and down through shoulders.

I now have insommnia ie.it is now 5am, the tinnitus is returning, every time I

move my head my neck crack/pops, and for added measure now I wake up at least 3

-4 times at night with my hands and arms numb to the point of pain and radiates

down my shoulders in wringing pain. Finally (sort of) the vertigo and NO short

term memory are lots 'o fun!

I KNOW I'm not unique,so many here can relate to everything I have said.

In addition to ACM, I also have IH/PTC, in '04 I had my first LP shunt, I also

have had migraines since age 12, and fibromyagia since '93.

Guess what?? My NSG says that since he did the decomp, I am now " cured " of

Chiari..its gone. Interestingly I haven't even personally seen him since the

morning of surgery in the pre-op. Since then I have been seen only by the PA,

with zero tests to check the flow,cuz remember..I am " cured " ! I mean no

disrespect to the PA, but whether it is a PA,a NSG, your best " guess " is NOT

good enough.

This would all make a tragic comedy except for the fact that we are REAL PEOPLE,

with desires for real lives ,and a hope for some normalness in our lives.

I believe as well that God has a true and perfect plan for each who seek his

Will. I finally this afternoon got the PA (not the Dr) to agree to order a head

and neck MRI. This only came after being previously denied and blown off.The

thing is I am stuck in an HMO, I don't get many choices. He agreed to the test

after I sent an email asking if I would need to make a call to patient relations

and be forced to have a complaint filed.

BOTTOM LINE EVERYONE, we should never have to go this far!

I know this is very long, but we have got to continue to help each other.

FYI, the tests I had requested was for cine MRI of head/neck/and spine. I to

this day have not had a MRI lower then my neck, has anyone else had that happen?

Can they actually know for sure there is no syrinx without a spine MRI? thats

what they told me...I , like all of us just want to know what IS happening

before I go bonkers.

Bless you all!!!!!

Bev in OR 

 Bev

Far too Blessed to except to live Stressed