I'm in shock

[semor]

I just found out I have Chiari on Friday. I have no details have not even seen a neuro yet but am getting my referral today, from my PCP, to a guy I found at Mass General, name of Dr. Jorges. He specializes in Chiari. I could say more and I will later, I just wanted to say I'm scared. Also that I am glad I found this forum. I don't usually feel sorry for myself but I definitely do now.

[selmaS]

HI and welcome to the chiari forum.

It is ok to be scared...we all have been at one point or another.It is good that u found a chiari specialist right away...many of us go sometimes yrs just trying to get a dx and then the right dr.....so u r doing pretty good so far.
May I ask how long u had symptoms, and what they r?
Did u get tested for related conditions yet?

We r happy to have u join our little family,m but not for the reasons u had to seek us out.

"selma"

"selma"

[*Stormy*]

Welcome!!

Yes it is totally natural to feel scared and rightly so!! It sounds like you are on the right path already by finding someone who is experienced with CM. Are you seeing a NL or a NS? IF your Dr is not a NS I highly suggest that you look into seeing one right away!!

I know that have been many times that I have felt sorry for myself (like everyday lol..) but it has also caused me to realize how strong of a person I and all these ppl on the forum are.

With our help, you WILL get through it :)

Take care and good luck!

Carolyn

[Kim60]

Hi and Welcome,
I am in NH and have heard about Dr. Jorges in Boston.  There is also a good NS (can't remember his name but he's listed on website) at Brigham  & Womens if you're closer to that area and want to get another opinion.  I know what you mean about being in shock and scared.  I was very shocked in November when I found out about myself.  I was online the second I got home to find out more about this crazy disease.  I was so happy to have found this forum.  They are all very helpful here.  
I got 3 opinions before my surgery on June 30th.  I ended up going with Dr. David at Lahey in Burlington. He has done alot of these surgeries with good results and his nurse was great too.  I'm still home recovering and doing fine for the most part.  I have had a problem with my neck/back for a couple of days but I think it's because I did something I shouldn't have because I thought I was ready.. I see the NS on Monday (6 week check) so we'll see what he says. I'm glad I got the surgery over with before I got any worse with my symptoms.  They seemed to have been progressing fast.  The NS told me he see that the earlier you can get it done the better your results are, but this is not a cure.  I am 50 and pretty healthy otherwise so I figured this would be a good time to have it done.. Believe me I went back and forth many times in my mind and almost chickened out but I'm glad I didn't.
I hope your appointment goes well with the NS.  Good luck with everything.
Take things one day at a time and as hard as it is don't let this consume you!
Take care,
Kim in NH

[chiarigirl11]

hey, and welcomeeee, its normal to be really scared at first, and i go to mass general for my chiari too!!! although i dont have the same doctor as you, its a reallly good hospital and your in good hands. its a good thing you joined this, i know when i first found out i had chiari, this helped me so much...hope all goes well :)



~~elle~~