CINE MRI Results

[jorlex137]

Got the results today, it's a 6mm with abnormal CSF Flow.  So neurologist is sending me on to see a neurosurgeon by the name of Dr. Iskandar at UW in Madison.

More waiting!  

[jorlex137]

They called and said Dr. Iskander sees 4 chiari patients a month in their Chiari clinic and he is going to take my case and the soonest they can get me in is November.  

[rod44]

Hi jorlex137,
Sorry to hear you have had a bad W/E,
Hopefully your wait wont be so long this time.
ROD

[selmaS]

HI...I know how rough it is to wait and then to feel like this on top of it all....but do try and relax...call the first dr that said they would forward ur info to let them know they didn't receive it.....stress will only make u feel worse, so do try and relax a little.

"selma"

[jorlex137]

I called today to ask if they got the referral because I was told I would be hearing from someone.  She said they did not receive anything on me,so that explains why no phone call.
More waiting!
Meanwhile I had a bad weekend of pain!  Seems if I moved my head the wrong direction I would get a shooting pain!  Has not been fun this weekend!  Of course I also feel like my skull is burning as well!

[rod44]

Hi
You need to chase them up on Monday, one or maybe two days delay is forgivable but after that u need to get dialling, see what is going on
As Selma said enjoy the W/E.
ROD

[selmaS]

Hi...if we all knew the answer to that we could help avoid that.

Try and enjoy the weekend and call first thing Monday.

"selma"

[jorlex137]

So when I got my results on Wednesday the nurse said I was being referred to the surgeon, Dr. Iskandar at UW in Madison and she said I quote "they will be calling you today"
Well today is Friday!  No one ever called!
So I'm guessing I should call someone to see what happened with that!  Geez!  Why is everything a uphill battle!?!?!

[jorlex137]

thanks so much!  i'm praying to be heard as well!  

[rod44]

I will keep you in my thoughts and prayers and hope the doctors  will listen... hear ...and take on board what you say . some  listen but don’t hear us others hear but dont listen to us

rod

[jorlex137]

Hmm!  Thanks so much!  I'll keep you posted!  I have no idea when I'll get in to see him.  Should know tomorrow.

[selmaS]

Hi...5 mm is where most NS recogonize chiari.

Abnormal flow seems to indicate an obstruction to the CSF.Most chiari drs look for an abnormal flow and symptoms as well as qualility of life when considering a patient for surgery.

Some chiari drs that specialize with peds also treat adults......they actually may see more patients.I know I've seen his name b4....but I don't know much about him.

"selma"

[rod44]

PS
Abnormal CSF flow = obstruction… due to CM

or Syrinx???

[rod44]

I think Paediatric NS also see adults if the illness is congenital  or if affects are carried through from childhood to adulthood  they may have a consulting role  

[jorlex137]

Thanks!  I was thinking 6mm is small but wondering what the abnormal CSF flow means?
UW is supposed to all me tomorrow with a date to see the NS.  I looked him up...he is a ped ns?  Does say he specializes in Chiari...but peds?  

[selmaS]

HI ...I feel the same as Rod.....happy u have a dx and a place to move forward with......but sorry that u have the info needed to get treatment and as Rebecca said...and the info to be taken seriously.

"selma"

[rod44]

Hi jolex137
I don’t know if I should say sorry to hear your news or say congratulations on getting a dx!!!, I  guess it should be both, it is not such good news but I am glad you are getting somewhere with your illness . You can now move on to the next stage of your treatment.
When do you see the NS?
ROD

[youngwife]

Hey!

I understand the frustrations of going from appointment to appointment, and waiting for the next appointment.

But, I am thankful that you have something to show why you are having the symptoms you are having.  Surely with 6mm herniation and abnormal CSF flow, you will be taken seriously.

Blessings,

Rebecca