Now I am totally confused....

[goladene]

After a month of waiting, I went to NS today.  He didn't even see me until after he looked at my mri.  Came in looked at me and said "you are not a surgical candidate and I don't even think you have chiari".  He told me that yes my tonsils are lower than normal but it appears that the fluid is moving okay as there is a gap.  And....we were done.  I asked him repeatedly then why did the neurologist say that I had it and how do you explain how I am feeling.  He said he doesn't know and cant he just knows that he wont do surgery.  Told me to try deep tissue massages or acupuncture.

I am so very confused.  So do I just sick it up and accept this is my life?  I am so terribly frustrated.

[auntij2746]

I found it helps tremendously to record  the appointments that way I can really listen to the dr and not have to write things down.  And can listen to the recording multiple times afterwards. Also as linda said have a health partner with you and each of you have a copy of the lust of your questions in case you forget to ask one.

[alimcat]

No never give up, don't waste your time on that doc. I have come to decide myself before I even set an appointment up anymore that I will put the doctors through a screening. I too am sick of the denial of chiari and related conditions. I want to tell them if my symptoms are of no concern to you and you don't think chiari is the culprit then why do I and every other fellow chiarian have the same story to tell, yet we have never met or talked before this point??? Answer me that and then tell me that this isn't the reason for my life being ripped away and it only gets worse as time is passing...??? Answer us that! Also if they feel it is not the culprit of our problems but we have it then why are the not looking into any related conditions, I feel its like pulling teeth to get them to do their job! It's sick. And its unbelievably scary how little they know about chiari and related conditions! Very scary to say the least. God bless you and you are in my prayers as well! xoxo

[linnielou232]

As you see some of us have been on he same Charian runaround as you.  I also went to to NS one was a specialist and told me I wasn't a candidate for surgery.  I let in tears and so broken because I knew my body couldn't handle much more.  I finally found one that listened and understood and I had surgery and once he got in there he told my family that once he got in there he could understand why I was in so much pain.  I had a syrinx, bone spurs in my neck and I do feel much better today.  Just please be persistant.  Get all your records and start a journal on how you feel and questions that you want to ask your next NS you see.  This helped so much.  Also having a health partner you can vouch for what you are going through helps also.  I know when I went to appointments I miss half of what they said after I heard the word surgery so it helped me to have someone by my side.  We are here for you and please don't let this discourage you.  There are Dr.s out there that care.  Sometimes it takes time to find them.  Best of luck.  Your in my prayers.
Linda :)

[Rahe28]

Hi there. I am with Selma on this one. Everyone here kept telling me find a specialist....and I couldn't so I went to a reg NS and he basically told me yeah he would do it but no all iit would help with was the valsalva maneuvers ha's.....and that all of my other symptoms were made up. That's when the hunt began for a real specialist...and boy does it make a difference in the level of care you recieve, and as Selma also mentioned not everyone is a candidate for surgery, but there could be a related condition that may be causing the pain, and without a specialist you can forget getting to the bottom of it. This is the one thing I heard over and over and over, and now I am saying it to you. Please don;t waste the next year with some NS who really could care less, and find a specialist !! Best wishes to you !

[selmaS]

  Hi, I know it can be very frustrating...I had 2 NS's that said almost the same to me as well....my problem was they were NS's and not chiari specialists.

Once I went to a chiari specialist I had more testing done, and finally treatment......

Not all with Chiari r surgical candidates, even when u go to a chiari specialist, but I would trust their opinion over that of a reg NS. JMHO.