so frustrated!

[MoonShineSmiles]

so I got my referral letter in the mail finally. the doctor I saw put the referral in to the exact hospital that I specifically told her that, and I quote "would rather die" than go to... do I have no choice in my own health? I don't know what to do. on one hand I really just need to be seen ASAP and see where I need to go from here. on the other hand, I'm not confident in the hospital that I'm being sent to. grrrrrrrrrrrrrrrrrrrrr so frustrated! what would you guys do in this situation?

[selmaS]

  The thing is a hospital can have a great reputation but if the rep is not for Chiari we should not look to that hospital for what we need....but look at the individual Dr.

But I do understand your reasons and would feel the same way....

I really believe that is the best way to deal with this...and I pray you walk away with some positive info.

[MoonShineSmiles]

my animosity about this particular hospital is directly related to my Chiari diagnosis (amongst other horror stories that I could go on about - both personal and from friends and family). it was their ER that made the "final" diagnosis. the doctor looked me in my face and says, "well... the Chiari malformation is confirmed. so, what does that mean? well, in your case, nothing. since the pressure is gone from your head now - you're fine. you have no need for further care. I'm going to write you a prescription for pain medication and then you can go home." like, "here - here's some pills, now get the "F" out of here!" after waiting for over 7 hours just for an MRI...

the reason I requested the hospital I did is because I did massive research on all of my surrounding hospitals and they were the only ones that I found that has a Chiari specialist. they are also one of the best hospitals in the entire country (Loma Linda University Medical Center). I'm trying to cut out the middle man and jumping through hoops and not have to sing and dance like a monkey in order to get myself the proper care.

I talked it over with my husband. we arrived at pretty much the same conclusion. I'm going to go ahead and see what's what with where they did send me. if I don't like what I have in front of me then I'll just have to start over. at least its a starting place.

[selmaS]

  Hi...I know it is difficult to get referrals to where we want to go...and it will tie your hands as to where you will want to end up....but I had one such referral and after going found the Dr had no clue what Chiari was so my Dr was more open to send me to  a Dr that was more informed and experienced.

I am not sure what the reason you are so adamant to not go to a certain hospital.....but for just an exam and consult it may not be so bad..you are not going for surgery at this point....and the more you know the better it will be for you.....I know this is very frustrating to jump thru hoops and go to places you'd rather not....but you can get more info and it can help in the long run.....

[Emme80]

Well, I'd say it's a start. I can't count (especially w/my almost 6 week post-op brain) how many places I had to go to, go through...the dance. And that was after being DX'd 10 years ago. But, during the dog&pony show dance (some NL I didn't like, some NS I realized I wanted nothing to do with) , but I did utilize what I could....further testing (always ask for actual imaging to be put on CD for your own records-I've got a collection at this point) test "findings"- the written report as well. Further testing a for as Selma would say ALL related conditions (I can say... I wish I'd done testing for EDS before surgery...but I did get EMG's, CINE, blood work ...a lot of blood work). So, if you're able to get simply testing done-see a NL... never hurts to speak to Dr's so you get the feel of what to ask the next one, etc. While doing so,you can arrange to go back to your Dr. and ask for a referral to the hospital you'd wanted the referral to.  I've just always utilized what was in front of me - even if I knew It would not end up being my...correct hospital, Dr, etc.
In the meantime, call in to your Dr. and explain again. I know my Dr. changed referral just due to a place that was closer to me. Easy fix..
But don't give up hope...you don't have to land wherever the place you first/at the first stop on the flight! You do have a choice.