They've Decided I Didn't Exist...

... before the age of eight. This story will be one more in support of getting your medical records as early in your life as possible. I highly recommend it. Adults... this means now. Parents... this means get your child's now.

Anyway, so here's the story. Yesterday I had finally received my medical records. In looking at them, I discovered there are no records there for the time before I was married. No big deal. My previous doctor still has an office so I called over there and sure enough I could pick up my records today. Great!!! I knew as soon as I picked it up, something was missing. It was just way to light. So what's missing?

You see, here's the story. My first pediatrician was a wonderful doctor. I saw him through my struggles with tonsillitis, both allergic reactions (penicillin and codeine), my problem with anesthesia, the early history of shaking issues, etc. Unfortunately, he decided to retire. My records were transferred to another doctor. We were with the second doctor for two years... during which he attempted to kill me three times prompting my mom to change doctors again. All of my records were supposed to be transferred to my new doctor. He said they were. Mom believed him. So what's the problem?

Well, apparently his idea of sending my records was to write a one page summary giving my birth weight, immunization history, and a barely legible note that I had an anesthesia disorder when I had a T&A on 11/81. (Tonsil and adenoid) This was all he sent to my doctor. None of the records about my allergies. Nothing about the two neurologists I was sent to about my shaking. No history of why I had surgery and what the outcome was. NOTHING. Now I can understand sending a simple summary such as this for a child whose worst problem is an ear infection but not for a child whom probably had a thicker record than a 20 year old!!!

So anyway, all my medical history prior to my 8th birthday is now gone. (I haven't fully given up but I'm guessing it's been long destroyed even if I can find the doctor all the records were transferred to when he retired.) I don't know that there would be anything in those records that could shed some light but I can't help but feel like a part of me is missing without them. That small chunk of my life that now can only be recalled by my family and that's assuming their memories are up to it. I now may never know if my shaking disorder as a child was in any way related to my tumor. I guess there's worse things... it just really sucks right now.

So again, I plead to those of you out there... Get your records in order now. Contact your doctors while you know where your records are. If you have kids, get them a file started. It just might save a lot of headache some day.

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...

Start Planning: Getting Medical Records

I have a list of 60 or more things I need to get done in the category I call "Final Planning". Most of them are things that people should do anyway to help ease the burden on loved ones when their time comes. Yes, I realize most 28 year olds don't think about this type of thing but I'll be honest and tell you that it has been on my to-do list for about 10 years now. I've always been one to be prepared for anything.

Anyway, although not completely related to the "Final Planning" part, one of the tasks was to get copies of my medical records. I believe this is important for anyone but so much more important for those with a serious medical diagnosis. I know they will allow me to seek a second opinion without the hassle of having to have my records sent, to verify information is correct and therefore nothing missed, and to be able to make a list of accurate information in case of an emergency.

I started this process as quickly as I could after being diagnosed. I did some research first and figured out that I just had to call to obtain copies. Well, it wasn't quite that simple. I was able to get a hold of the records department and they faxed me some paperwork to fill out asking information about the doctor I wished records from, what types of records, etc. I faxed the information back that day. After not hearing from them for over a week, I contacted them again and found out that it could take up to 30 days to get my records. I'm glad I started this process early!

So now my records are in the process of getting to me. I also began a "Medical Journal" for me to keep track of all of my information. I won't get into that now but be on the lookout for an entry concerning it at a later time. It's been a very handy investment for me.