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A recent experience I had served to reinforce a point I have made before,
namely that patients should take the responsibility to maintain their own
medical records. I think I have related previously my travails with a
hernia (the irony is not lost on me that I am having ongoing problems with a
traditional hernia, while the problems from my brain herniation seem to be
under control) in my stomach. In the past three years I have had surgery
to correct the same hernia twice, first by the father in a father-son
surgical team, and then by the son. That means that two of the last
three summers were somewhat marred by having my stomach cut open and the
muscles sewn back together. With three active, young children it's
been a bit of an inconvenience.
Anyway, I thought the second surgery would do it, but recently I began
having problems again and the tell-tale bulge in my stomach was back.
However, it did not seem to limit my activities as it had in the past, so I
wasn't sure (and still am not) what was going on.
Needless to say, I called my surgeon to make an appointment, but was
surprised when I got a phone company recording saying the number had been
disconnected. Figuring they had changed phone numbers, I called one of
their other offices but that number had been disconnected as well.
Now, I wasn't sure what the deal was so I called my insurance company to
see if they had updated contact information for the surgeons.
Unfortunately, although the doctors were still listed as active with the
insurance company, they had the same phone numbers which I had already
tried. I was starting to realize that they had likely closed up shop
for some reason when my wife thought to call the outpatient department at
the hospital where I had had the surgeries. At the point, to no one's
surprise, the nurses there confirmed that the father had retired and the son
had packed up and moved out of state (likely fleeing the high malpractice
costs in Pennsylvania).
Naturally, I contacted a different surgeon, made an appointment, and then
realized it would help if he knew what the other guys had done. Of
course, my wonderful doctors didn't leave any forwarding numbers and made no
attempt to contact their patients, but I was able to put in a request with
the hospital to get the operative reports from my two surgeries.
I kicked myself a little bit because I knew that for any significant
medical issue, it is best to get a copy of all the relevant records.
This is especially true for Chiari. My advise is to keep a copy of all
your MRI's and on a regular basis request the MRI reports and your medical
records from whoever is treating you. You never know when you might
need them to see someone else or when a medical office might close with no
notice.
In my case, the issue of getting my surgical reports took on a sense of
urgency when a family member sent me an article about how a specific type of
hernia patch had been recalled, but that the manufacturer was slow to do so.
In fact, there had been 80 injuries associated with this patch and several
fatalities. While I try to get take media stories like these with a
grain of salt, it was pretty frightening how lax many medical
manufacturers are in tracking and responding to problems (but that's a
strory for another day).
While the logical part of my brain had assessed that the chances were low
that I had the recalled patch in my body, I have to admit that by the time
my records were ready to pick up I was quite anxious to find out for sure.
Luckily when I ripped open the envelope and scanned the brief report, I
found out that just as I thought a different type of patch had been used in
my case.
However, I did find a different surprise in the report from my second
surgery. As I read it in more detail, I noted that the surgeon decided
to leave the lump of tissue associated with the hernia in my body so that my
stomach was not directly exposed. While this seemed logical, at no
point either before or after the surgery did he tell me he would do this.
So there's a second reason to keep your own medical records, it serves as
a check against what you've been told by your doctor. I'm not suggesting in
this case anything more than he didn't think it was relevant, but I have
heard from many people who see things on their MRI reports that their
doctors did not discuss with them.
Of course, since I now have an appointment because of a lump in my
stomach, in retrospect it certainly would have been nice if he had told me
he was going to leave it in. Looks like I'll have to wait until
mid-April to find out, but you can bet money that if I need more surgery I
will be requesting the reports as soon as I get home.
-- Rick Labuda
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