Thursday, October 11, 2007

Sometimes Better Off Not knowing...

Ok, well not really but in this case I was nice and calm and prepared for next Friday until I received my medical records from my neurosurgeon. UGH, is all I'm going to say as I sit here extremely pissed. At least from this point forward, I will be requesting the updates at the time of the visit so there won't be weeks of relying on questionable data again.

So here's the scoop. Today I FINALLY received my medical records that I requested 6 weeks ago. I quickly found out that they don't include the MRI scans that I really need but that's been sorted out. For those who may be going through the same thing as me, you have to request your MRI scans separately from the radiology department. Records will not provide the copies of your scans.

Anyway, so I review through my records to see if I can find any inaccuracies and to make sure I've located all the information that I'm particularly interested in. Well, I find a very interesting inconsistency right off the bat starting with my very first appointment with the neurosurgeon. John and I both remember him vividly stating that he would not operate on it on someone my age, based on its location. Is this what he wrote in my records? Hell no. His words, "I have recommended that she consider an image-guided biopsy to try and determine a diagnosis. It may be amenable to resection, depending on grade, if this tends to be a glioma." Does that sound anything like what he told us?

I have my theory on why he said it and it doesn't please me one bit. In my record with my GP, it was indicated that I was insistent that surgery was not an option. He saw this. He knew that if he came out saying that surgery might be an option, he would lose me for any and ALL tests. Interestingly enough, even other records from phone conversations, continue to lead to this "surgery is not an option" approach. Why do doctors see someone, who they know wants the truth with no punches pulled, and insist on giving us what we want instead of what they really think? It annoys me, because now I really question whether they will even consider Gamma Knife for me if I am indeed a candidate for surgery. Doctors, of course, would much rather operate and "remove" it then do something that in the long run is better for the patient. (Mentally as well as physically in this case.)

I also find a kick out of the "Recommendation". He states in there that he talked about the risks of surgery including bleeding, infection, and anesthesia. Funny enough the only thing we recalled about the "surgery" (which I'm assuming is the biopsy since he said surgery wasn't an option) was that there is a less than 1% chance of anything going wrong. Again, he contradicts himself because even in their notes on the phone conversation when I asked about the biopsy and symptoms, he states that there is little chance of problems from it... yet there's this chance of bleeding... infection... argh. Can you tell I'm pretty pissed off right now?

And just a side note, from this point forward I am going to be asking for the permission to use a voice recorder in all future doctor's appointments on this subject. Then that way when they try to say that's not what they said...

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