Chiari Malformation Community
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1590979 tn?1302010435


I DON'T BELIEVE IT!! my app' has been cancelled again,now it's may4th.i have so many question for him and have been waiting for what seems like forever!!this is the third time he's cancelled...alls i now about my condition is i have chiari type 1,don't know if theres a block,syrinx or anthing else??urrrgg now i'm just rambling sorry...!
3 Responses
1179332 tn?1297482590
I'm so sorry...that's awful that they have canceled on you again!! So frustrating!!

Unfortunately, it is really hard to make specialists realize how hard this is for us, battling symptoms and the unknown's. I remember that I got myself all worked up for my surgery and then they canceled two days before and I had to wait three more weeks. It took two months to even get that first date so it was devastating...

To keep yourself going...spend that extra time writing down questions you may have and keeping a daily journal of symptoms so that when you do get there, you can make the most out of the appt. Also, VERY important...get some contact info for him/her so that if you have future questions you don't have to wait weeks to ask them!! My NS gave me an email address that I could contact him at.

Keep your chin up:)
1435895 tn?1304294841
Hello again!  I am so sorry you are going thru this... seems to be the norm with most of us.  I have been waiting for surgery for 4 months now because I refuse to let anyone other than my doc do it.  It seems to be one delay after another.  I have started to believe "the reason" for all this was to teach me some patience.  We sure have no control over any of this.  Try to hang in there and not think about it.  The thinking is what really drives me nuts.  

1179332 tn?1297482590
I agree...when I am in the mood to think of the positive aspects of dealing with this condition...that is one thing I would say too. I was never a patient person before and I always had to be in control, that option has been taken out of my hands and it has improved me overall in that area. It has also made me realize how STRONG I really am, I would have never thought that I would be doing as well as I am despite my circumstances. I am positive that this is true for the rest of you as well :)

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