I GIVE UP!

[flcrakar]

I know it has been sometime since I posted. But I do read often. I am litterally at my witts end with condition and the MANY uneducated doctors. The dr attempts of treating a condition that they wont even bother to educate themselves on is just plain out ignorant! AGAIN I am being pushed off into another faucet of medical care because I am not a surgical candidate based only on my imaging studies. This after I was told that I am a surgical candidate by Dr B in TCI.

Unfortunately I can not afford, nor do I have the family needed to goto NY for any procedure. My whole life is being effected by this condition and I can not get anyone in the medical field here to LISTEN to what I am telling them. My job is on the line because I have a very physical job that I love so much! As a firefighter and a paramedic with may years in the medical profession being a patient advocate, I am appalled at the way I have been treated throughout this ordeal.

I feel that Drs have become consumed with managed care to a degree that has clouded thier judgement of appropriate patient care. It is no longer about treating a patient as a whole and now based only only on test results that define the "text book patient". We (paramedics) call the kind of treatment as "cookbook", i.e. Step 1...ect.

Being refused to be seen by a very high end NS, familiar with Chiari, based only on imaging studies is ludicrist! His nurse called me to let me know that "there is not enough crowding to warrant surgery", so he wants me to be seen by the spine dr.. That is fine, but since when is Chiari based only on crowding? Oh well....again I will go see this Dr that is 5 hours away and hope to god I have a bad day so they can see me at my worst!

I hope all is well for those of us with horrible condition! Sorry to rant, but I have no one else I can talk to that completely understands! Thanks for listening! At least i know I am not completly alone.

[*Stormy*]

I wish I could help you to get where you needed but the least I can do is give you a pep talk!!

Don't give up...I know it's frustrating, tiring and sometimes you just want to curl up in a ball and never get out of bed. I've been there...I know how horrible it feels.

But...keep pushing forward!! Somewhere out there is a Dr that cares and is willing to help you. That's what you need to find. Living in Canada there is SO little knowledge about Chiari but I finally found someone who helped me. You will too, I know it!!

I really like Selma's idea of some kind of fundraising...maybe it is time to let your co-workers know? I was like you and didn't want to talk about it much with other people but now I look at it as a mission to spread the word about this condition. Now is the time where you are going to have to take some more drastic steps and put yourself first!!

Take care of yourself and I am rooting for you :)
Carolyn

[selmaS]

  I am shocked at Dr G that does not make sense as he has a good rep for chiari....very odd.

  I am not sure what the heck is going on...u know all the lawsuits and issues the chiari drs r going thru does not help either.....and by lawsuits I mean frivolous lawsuits.....and medical boards dictating what they feel  is the correct way to treat chiari....

  I wish I knew what to tell u.....and the only thing I can think of is if u r ready for surgery...and u have drs u trust...then try to get the money by fund raising...

  The FD may be like a hen house, but isn't it also like a family?

  "selma"

[flcrakar]

I sent a copy of all the reports from TCI and Manhasset to Dr G. I have not told too many people at FD about my condition. It is worse than a hen house in my profession. My pride has been a little bit of an issue as well. But I am getting to the point of accepting any help I can get.

You know what is the worst....even my CINE said there is "assenuation'  with flexion of my cspine. Well if you look that word up it means weakend, diminished. So I am not sure what the hell the issue is here.

Why would a dr be like that? Florida is a horrible state for health care unless you are a geriatric patient!

[selmaS]

  
   Hi...it has been some time ...missed searing from you...and I am so sorry ur being cooked, instead of treated the way u should,.....I agree, too many drs r doing this...follow a book and not listening to their patients who know their bodies and that something more is wrong....

Will Dr B send a referral of his accounts to the Dr in FL?

I do know what u r going thru, I went thru it for yrs, and I pray u will find answers sooner then I did....no one should have to go thru this crap.

  And I would ask u to expand on y u can not go to NY...can ur friends in the fire dept help with a fund raiser?.....
  AS u know I say it all the time chiari is life altering...and many of us can not go back to the same career we had be 4.....so, it is a journey that needs the support of our fellow chiarians....so do stop by more and let us know what is going on.ANd we will help if we can : )

  "selma"

[Spaceystac]

We are here for you to rant hun, I understand all too well what you are going through.  You don't hear this as often for the people like you in the medical field though. It is the most stressful thing in many of our lives it seems, just finding a doctor to listen and learn if needed is so hard to come buy these days. Then it seems like if you have great insurance or tons of money its not a big deal, we will operate on ya sure!  
I feel like giving up on the doctors often, then something happens and you have to go to them. It is like a bad relationship when the partner is manipulative and you feel one way by your self confident and sure of your beliefs. Then here comes the partner that makes you feel bad about your self and debunks all of you firm beliefs.  I hate this and I have gone through 3 primary care providers in the last few months alone. One of them took me off of their primary care for asking for a referral to a Neurologist. The last one I fired because he refused the referral again, so I was like this is a waste of our time, I will find a new doctor.

I am sorry you have to live like this, I hope you appointment goes well.