Medical Records

We probably don't think about our medical records very much and that could potentially be a mistake if one has a long term medical problem like me. I wish now that I would have kept personal copies of important medical records over the years. This photo is from a film of my aneurysm scan from May 2002 and one of the few records I have of tests.

In New York State the law requires doctors and hospitals to keep your medical records for seven years and most institutions and offices keep them for ten years. I recently had a problem concerning access to my medical records. 

This concern about my medical records began in November 2017. Here is a copy of a note I sent to my doctor.

"Several days ago I experienced a period of confusion and disorientation concerning a routine matter lasting about twenty minutes that frightened my wife and daughter. A week before that I had a brief but intense dizzy spell that knocked me hard into a door and reminded me of being thrown about in heavy seas. These incidents concern me because of my family history of aneurysms and strokes. Four of my five siblings have had strokes. Perhaps it is time for me to meet with a neurologist and be evaluated and tested specifically for stroke. Should I come in and see you or get a referral? I’ve been fine the past few days."

My doctor made arrangements for me to see a neurologist at the Dent Institute and after a consultation wanted me to have an MRI to see if there was any sign of a minor stroke. A little later Dent called me cancelling the MRI because they were concerned with the aneurysm clip in my brain that was from the 1980's and they thought it was not safe. I had told the doctors I had previously been given MRI scans in the 1990's because my aneurysm clip was one of the first non-ferrous clips that could be used in a magnetic resonance scan. My surgeon, Dr. Budney, was one of the first doctors to use the new clips in 1989.

Prior to the MRI scans I had angiogram scans before and after my surgery in 1989. My very first scan was a CATscan in mid 1988 that did not reveal any aneurysms. Later in the year in November I had an angiogram that indicated I had two aneurysm. After the surgery I had another angiogram right away and then a couple more over the next several years. They were hard scans that took a lot out of me and also at that time required an overnight stay in the hospital.

I was very happy and relieved when the MRI scans came along and that I had a clip that allowed me to have that scan. It made a big difference for several years. At some point in the late 90's or early 00's my doctor had me start getting MRA scans and then some time later CTA scans at Roswell rather than Buffalo General where I had been getting the MRI's.

These scans all happened over 20 to 30 years ago. So in 2018 when the doctors at Dent wanted to verify my aneurysm clips were MRI safe there was no record of the scans anywhere in my files. Apparently the original hospital where I had my surgery was closed and the records stored in a warehouse somewhere and my surgeon had retired. I spent several hours on the phone over several days trying to get copies of my records to verify I have had MRIs. Nothing worked. They eventually sent me to Buffalo General to get a CATscan that would measure the density of my clip to determine if it was safe for an MRI. I never did hear about the results. I wrote about that scan experience is this Teachable Moment post.

The thing I got out of all this is to keep copies of your medical records because the medical community may not do it. Part of my problem was that my surgery was pre-computer records. Many paper records were scanned into the new online systems but obviously not all of them and certainly not mine. Many doctors and hospitals are giving out cards with information about the medical procedure and hardware placed in the brain like the aneurysm clips. A patient can keep the card and refer to it over the years. I don't have that.

It's been over three years since I started the process of finding out difinitively what is in my head and have it in writing. Each time I've been to the doctors I bring up the subject and ask to get the information. If something were to happen to me and I had a stroke for example it would be nice to know if I can get an MRI. I know I've had them before but the current doctors want proof that it is safe for me. Otherwise I know that I would get a more invasive angiogram if there was a problem with my brain again.