Had to laugh today

[nichold]

I went to a pulminary specialist to do a screening for a sleep study today. While talking I informed him that they just discovered a 5mm Chiari and asked him if sleep apnea could hurt or have anything to do with Chiari. Knowing good and well that it was a red flag. And he assured me that sleep apnea and Chiari have nothing in common and one had absolutely nothing to do with the other. I am learning quickly that these small town Wyoming Drs. don't know anything about Chiari. LOL

[linnielou232]

That is good that you and your family educate yourself on this because as most of us found out not a lot of people know about this.  That's why when I was in seeing my Pain specialist yesterday I told her how grateful I was that she listened and learned some thing's to help other's.  I have went to Dr. that blow you off and that is the most flustrating because all you want to do is feel better.  Keep educating them.

[nichold]

I just love his video's they have really helped me understand what all of these symptoms are. I have not had a Spinal MRI done but I am almost certain I have SM as well because of my symptoms but I will wait and confirm that with an MRI.

[billyz123]

I know what you mean. Isn't it crazy how you can feel such strange things happening to you and be able to describe them so clearly, yet it doesn't help anybody figure out your problem.

I finally got to TCI today and met with Dr. Bolognese. He showed me a picture of my MRI and started describing what I was looking at and I just stopped him and said "I've watched all your videos." :)

I took cd's of my CT-scans and MRI's home with me right after I got them done. I knew what I had before the radiologist reports even came back. This is only possible because of so many helpful people that have shared all they know about Chiari online.

[nichold]

It is so true. I have only know about this CM for about two weeks and I have already read enough that I could probably answer my own questions but these Drs. just blow me away like it is nothing. That is why my husband and I have just decided to go to the Chiari Center in Colorado. I called up there yesterday and my PCP is waiting for my sleep study to be done next week and he will send the MRI and all my tests up there and they will be calling me. I talked with the Dr. today about this fluttery feeling I had in my chest. It was doing it while I was in his office and he couldn't tell me what it was. He said it wasn't esophogus spasm. It even started going onto my tounge and it would twitch a bit and my chin. He just looked at me like what the heck is going on with you woman.

[billyz123]

you guys are awesome :)

[bookworm79]

Unfortunately it's not just small town doctors. Even these big city doctors don't know jack about it.  In fact my biggest complaint isn't my migraines...it's my breathing issues.  I have no other reason on this planet to have breathing issues so common sense (let alone a medical degree) would indicate it's the Chiari.  Once you elminate other health issues, no weight issues, no smoking, no drugs, no chemicals or irritants in your bedroom, no psychiatric issues, not eating your blanket in your sleep...what the h*ll else could it be?  Geesh.  So frustrating.  I actually had someone tell me the other day I should go to medical school because of everything I know.  Pretty sad to say I think I could do a better job WITHOUT a medical degree than some of these ahole doctors I've encountered.

[selmaS]

  It is sad that as a patient u know more then a learned Dr.....but, it is the truth....lol...

or as another member says LIS......