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Hi Christine, I think what you suggest makes perfect sense--but I am having a hard time getting this done through our So.Cal non-profit HMO. In fact if I did not also have M.S. I am not sure I would have even had an MRI done or at least not as often.
I asked my oncologist about it last winter or spring and was told that they would not do one unless I had symptoms and those symptoms that would warrant one, he told me would be an unrelenting headache.
I was not able to get an MRI for anything bc related until I developed vertigo 3 years ago. I was dx'd with benign paroxysmal positional vertigo at the time which cleared up but has come and gone several times since. The neurologist I had been seeing then took an early retirement and I saw at least 3 different neurologists over the next 3 years until I was put with the head of the dept. He has been somewhat patronizing and arrogant. He told me that he would not order any more MRI's--that the oncologist had to do that from now on. However, the oncologist told me he would not order one unless I had symptoms which included an on-going headache.
I believe my last MRI was inconclusive and that the neurologist hinted that something was going on (not MS-related). One of the other neurologists I had seen told me that if anything was found that the only thing they could do was surgery. I happened to see a radiation oncologist a few mos. ago about something unrelated (possible soft tissue met in cervical spine area) who commented that they (hmo) didn't radiate for a bunch of little things or something to that effect.
My conclusions--that they don't test for things that they don't treat. My question--is there anything I can do to have an MRI every 6 months. Can we get any of the dr's on the advisory board to make that recommendation or help establish that as standard protocol for someone whose b.c. is Her2?
In addition what can be done to insure than an adequate MRI is done? What I mean by that stems from what I recently learned about MRI settings. I asked if I could get a bone MRI done at a private facility at which I offered to pay cash. My 2nd opinion private dr. would order it. However, I was informed by the facility, which was new and had state of the art MRI machine, that since they take medicare they cannot do any type of imaging that is not medicare approved. Thus, they could not do a full body bone MRI even if ordered since they are not allowed to do any procedure that all have equal access to obtain. In relation to brain MRI's -- since newest treatments for some types of brain mets are not standard protocol, even if I were to have a new brain MRI, I am wondering if they would use optimal settings to best show what might be going on? If not required to treat, they are not obligated to test or adquately image? Any suggestions or feedback would be appreciated.
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