update..

[emza1910]

hi all,
well i had me neurology consultant appointment today - went better than i expected.. my neuro said he wanted to refer me to see Dr Flint at the QE in birmingham ( QE is where i went today saw Dr Heafield) he said that CM could be the cause of my symptons but Dr Flint is the man i need to see to who will decide if i hav CM n if it needs to be treated! he said those famous words ' well you may not have it!' and he said ' theres people out there that have CM put dont hav any signs or sypmtons. he said mine whoever do sugguest is possible but a referral to dr flint is needed.. he showed me my MRI scan pics too - how razy though ive never seen them before.. he showed me my low lyin cerebellum tonsils and said they are slightly low he said roughtly about 1cm (not sure if thats good or bad) he showed me where it should lay and to me looked loads.. no wonder me pain wont go away!

so now i guess i wait for me referral.. jus wanted to let people that know  my story of my update! :-)

kinda feel like a rock has been lifted but at the same time scared as thinkin wat if i do hav it and flint says i gotta have surgery! hmmm..

emz x

[rod44]

Hi Emz, I am glad your appointment went well. It is a step in the right direction that they are at least acknowledging the problem. As others have suggested some CM patients may need surgery others may not. It is important that your doctors keep a close eye on your condition. I hope you find your new Doctor good and that you can get some relief from your symptom.

Ray

[selmaS]

It doesn't sound as if the question is whether or not u have chiari, it is whether or not this dr feels it is causing ur symptoms.

U have been dx'd with chiari....not all with it are surgical candidates...this is what he needs to determine, if not, then u need a good NL that will monitor ur chiari and symptoms to help give u relief.

"selma"

[emza1910]

thanx all..
i think the neuro i saw today was prepared for me, my doctor had already sent info to him with my concerns includin possible cm. and well wen i got there i told him straight that ive been left for 6yrs with no answers and thats long enough - its affectin my life and i need some answers. he did say well this low lyin tonsils could have nothin to do with wat your experiencin and that it may be somethin else.. i said well lets start rulin things out! i said i jus want me head.neck ache to go away. he told me i shouldnt listen to people on my help website and all that ******** sorry for me english. but i snapped and said im not on there for answers, i said bein left for 6yrs leaves ya feel alone tryin to cope with somethin / a condition i hav no answers for or support my group gives me the support knowin theres others out there like me gives me comfort on bad days but also hope too. he said he too wants to get me sorted and Dr Flint is the man to do soo.
i am scared now though as everythin lies on him weather i have this n weather surgery is needed! what if he says naaa you dont have CM then wat! could anythin else casue low lyin cerebellum tonsils??
thanx again, i will keep you all posted!

[Jennyfoo]

I'm so glad you're getting help and not getting the brush-off that so many of us do. Yay! Congrats on finding a dr who understands. Best of luck to ya. I hope your referral is quick  

TTFN,
Jenn

[selmaS]

So glad for the update and that u have a dr that is listening to u......and pray this dr helps u get relief.

Please keep us posted : )

"selma"

[taylapj]

So pleased to hear that your sounding lifted in mood, hopefully things get moving, and 1cm is quite a large herniation.

[niki3350]

Glad they finally listening to you hun and giving you the referral that you need, keep that fight inside you Honey but pray you dont have to,

Hope your next appointment with new neuro does not take an age to come through.

Take care

[Stephiec79]

It's good that your neurologist is at least giving you a referral! Most docs would just say you don't have CM...end of story!!! Best of luck to you!!!!