Medical Politics

[BobDiode]

I just saw my neurosurgeon that I have been seeing for over two years to try to get the CINE MRI CSF Study referral to the only place in the state that has the machine to do it. The doctor never mentioned ACM and since I showed him a letter that Dr Rosner stated that I had typical Chiari 1 Malformation he started in saying that having that sugary for it is highly controversial and most don't need it. I asked him just to please give me a referral to get the CINE MRI CSF study of my head and back. The doctor said he could do that but not my back just my head to start with and see if the first test warrants the back test. The next stumbling block will be the one who reads the test results. to decide on treatment if any. Some how I am beginning to think no in this state has ever preformed a Chiari decompression sugary in this state or can recognize any one who may need one. It's almost like  the insurance companies send fliers to all the practitioners to never motion Chiari Malformation to anyone!  and just keep giving out headache pills to fix all neurological headache problems.  I also have a feeling that the only way to get real help is to send all of my medical records with the CSF study to Dr.Oro to get the best opinion if he could do that without myself flying across the country.
  My question is ..... Is the medical community trying to sweep Chiari  Malformation  under the rug and if so for what reason?
High Costs ?

[Shane99]

Hey, Nashville isn't Northern . . .well, I suppose it is compared to Mississippi :D

And get down with your bad self Supasta!

[ThePeachy1]

I am loving those shirts and products !  too much brain to contain ! wahahahahah ! ok. I gotta get me some and you know what I think I am gonna cause a big old stinking news story and awarness thingy down here on the coast because you northners have the whole chiari thing to yourselves and I am all alone well I am going to be a SUPASTA!

[Shane99]

This is why it's important to help with Chiari Awareness.

There are t-shirts that you can buy - check out: http://www.zazzle.com/chiari+gifts

And look into helping with a Chiari Walk near you:
http://www.conquerchiari.org/walk%2009/Walk%2009%20General%20Info.htm

[ThePeachy1]

Bob- I am not a conspiracy theorist however it is definitely easy to see that the medical community is trained to look for horses and we come in as zebras, when we prove to them we are zebras they go no you are horses because we are doctors we cant be wrong we save lives. I am right now struggling with the fact that my military doctors knew about my problems and their severity and saw the herniation new of my moms herniation and told me now way was this related didn't tell me about mine told me I was fine and it was just headaches and to take vitamins for 4 years. seriously? and what really hurts is that there are very good, very caring, and very well trained doctors out there, but the road blocks we have to go thru to get to them seem so un-passable at times. thank goodness we have support groups like this and each other to share out thoughts experiences, and ideas, I can only hope we will all find doctors and relief out there, and the strength to get to it.

[Dawn1214]

I think it is lack of information about chiari more so than anything else. A cine study is only an MRI of the brain while they keep track of vitals and stuff. It is not a difficult test an there is no special equipment needed, just the mri machine, and yes they usually do the head as that is where the problem would lie as the tonsils would stop the flow. Have you had an mri of the spine to check for a syrinx yet?

There are many dr.'s that are up on Chiari and somewhere on this site is a link with dr. names. I am sure you could find someone on the list closer to you that could look at your disks and give their recommendation.

Hopefully others will chime in here and give you their advice as I am not an expert. Just have my personal experiance to share.

Dawn