Ok now I'm mad at all my doctors

[nsalem656]

I read the 2009 mri report it literally said I have chiari malformation and a mri of the lumbar and cervical can be done if clinically indicated. The doctor who ordered this test was an endocrinologist and was told repeatedly that the medicine I was taking for why I was seeing him was making my real dizzy spells worse. He should have told me about the  chiari. At a minumum to find out if I am symptomatic. I really hated the guy because he wasn't taking the dostinex side effects seriously, and he pissed me so off one time that I went off my meds. He's the county hospital endocrinologist that's why I switched to UCLA, but there is no excuse for not telling me.

[Shelltn]

I agree 1000%, there should be mandatory continuing education because even now there is  talk about Chiari0 without herniation & symotoms but patients are being dismissed & that is absolute BS, pardon my french lol....girl, I'm in process of seeking options for possible action & I've worked for a couple attorneys & my sister is a paralegal & both of my brothers & their wives are RNs so I've got a few aces in the hole so to speak....send me a PM if you'd like to exchange #s ...

[nsalem656]

It didn't feel like rambling. Probably cause I got the same chiari brain. The worse part is the first mri was done while I still had blue cross cobra. If I knew than I could have most of the expenses to go to new york tci dealt with and I probably wouldn't have had it as hard (maybe not) at fighting for ssi, so that I still had insurance when the cobra ran out.

[deadmemory]

To the poster...

Yes, I did report a doctor and I am actually speaking to an attorney regarding negligence and medical malpractice. Feel free to PM me if you want to talk.. I am and have been going through the BS for 2 years now. I just had my surgery, so I will be able to proceed with my attorneys..
I'm sorry that you, and so many of us have to deal with this.. I have contacted Oprah in hopes that maybe she could do a Chiari awareness episode.. my family has contacted Dr. Oz as well. Too many people have this Chiari and are being abused by people (doctors) who are supposed to take care of them. So many other people have this Chiari and don't even know what is wrong with them. I pray that somehow, Chiari (among other medical issues) will get the recognition it needs so that the suffering can stop and the healing begin.. I know there is no cure and we are bound with this for the rest of our lives, and when I mean "healing" I mean it in the sense that doctors stop mistreating the patient...

I ramble a lot. And thanks to my chiari brain I go off track.. hope SOMEONE can make sense of what I said.. lol, cuz I can't ;)

God bless
Krystal

[nsalem656]

That's the problem, I think they like treating stds because they can blame the victim. They can't blame the victims of chiari one.

[nsalem656]

I'd still like to at least report the endocrinologist. Did anyone try to report one of there doctors for neglect to their surpervisors (I bet they'd think twice if we did about not telling people)

[umdlotus]

I've got a very similar story.
My neurologist looked me in the eye and said, "You're lying, it's happening when you get upset. This is psychological," even with a positive MRI.

Doctors need to get a grip. True somatofom disorders are rare, and most people don't actually want their attention. At all. Ever.

Mine didn't even talk about my CTE, like it was no big deal, no way it could cause these symptoms, you're nuts, go home.... I can't believe how hard it is to get treated for something that's more complicated than a broken arm or bout with an STD.

[linnielou232]

I have to say that is where I found my answer's.  I was fornunate enough to have a wonderful PCP who sought out and found me answer's.  If she didn't know she will find someone who does.  If you haven't had an MRI you could ask you PCP and if they are caring and understanding they will find the answer's for you. Hope the best for you.

[nsalem656]

Can I still kill my ex endocrinologist. OK not kill I promise. Considering the doctor wouldn't do the paperwork for my school to give them a diagnosis and what's going on when it was only my tumor and said to get it from my primary, you would think he would have did the same about the chiari. Tell me to see the pcp about the mri.

[linnielou232]

I had the same sisuation in finding out of my Chairi.  I had an MRI and my previous PCP who retired never told me it was in my record's.  I went to several Dr.'s and spent lot's of time and money and the Chairi was in my records all this time. It was in my record's for over a yr and a half. It took me going to a new PCP who said.  "You probably have all this pain because of your Chairi".  I said "What?  What is Chairi?.  What a way to find out.  I came home that same day and my DH found me his forum which saved me so much time and gave me so many answer's.  I hope the best for you.  All I can say is at least now you can get the answer's and help you need.  

[nsalem656]

Thanks. I think I just needed to vent. It didn't matter how long you took. It was great for you to do it.

[ChiariWolf]

Ok, sorry it took me so long to get back to you on this article. But lets see if it will let me post the URL. If for any reason you can't view the link just PM me and I'll get it to you.

CW

http://www.chiariconnectioninternational.com/doctor.php#23

[nsalem656]

The first time I wasn't told about the tumor either (that was back in 06 and that was my fav. primary at the time is what drives me nuts) the second time they were looking for it. My period disappeared and my prolactin levels were high without pregnancy or breastfeeding. The third time, the doctor had no plans to tell me about the chiari, but I had an advanced copy of the mri report. These doctors need a reality check when it comes to chiari.

[ChiariWolf]

First Hello, sad to see you have found this enemy called Chiari, but glad to make your acuantiance.

Unfortunately I am kind of rushed this morning and don't have time to dig this up. But a while back when I was really 'ticked off' at a certain clinic and lack of IMO professionalism to take charge of my case when I called... I found a short article written by Dr. Oro. He is one of the top notch Chiari Drs. IN this letter he addresses the question you most likely have running through your mind right now. That being " Why didn't they tell me?".  His letter really helped me better understand. It's on the net, I'll try and remember to dig it up later this eve. Or if you want to look for it the letter was in a FAQ about Chiari. His part was titled something to the affect of "Why is Chiari Malformation Frequently Unrecognized or Ignored" or something like that... can't recall the exact title.

If I don't get back to you with that link- hey I have chiari PLEASE just remind me. Or someone PM me as if I can go the bathroom with diarea and then forget why I'm there and go back out... well I may have some memory issues! BTW-Yes that's a real story. :-\

CW

[irislita]

I understand u.a lot of people also have incidential finding of chiari on the report...as far as i know its not incidential if u present symptoms right? Or is a brain tumor also a finding by accident? Doctors please wake up...and at least he should have told u..a finding is a finding