This morning started off busy. Gary was home for most of it as he had a
meeting with one of his brain surgeons at 8am so we needed to get ready for
that. This was a follow up meeting for
the doctors in Phoenix, AZ. We’ll be
going back there in August to have his first follow up with his surgeon
there
.
We had quite a scare the first of this year with Gary. He had been going to our primary care doctor
since October 2016 and being treated for ear infections (something he had never
had in the past) and then vertigo (again something he had never had
before). I finally went with him after
we returned from our yearly trip to Georgia to see our daughter and her
family. I insisted that something more
needed to be done and so our doctor said he would refer him to a neurosurgeon
and while waiting for an appointment he would have a MRI done. The MRI was scheduled for that Friday. We received a call from our primary care
doctor that evening around 7pm with the results from the MRI and so began our
roller coaster ride. Because of some of the things that was going on with Gary
I had suspected a stroke so the doctor had Gary put him on speaker phone since
he had called on Gary’s cell phone. We
were told that we needed to see a brain surgeon that Gary had an AVM (Arteriovenous
malformation -something we knew nothing about but would soon research
completely) and that he had had an aneurysm and a couple of light strokes . I was told to keep an eye on him and if I saw
anything out of the ordinary to get him to the hospital. This is the first week of January, 2017. The following Monday we call the neurosurgeon
and get an appointment for that Friday.
He makes an appointment for an angiogram so they can get a better view
of the brain. So the following Wednesday
we go to one of the local hospitals and get this angiogram. After the angiogram another doctor shows up,
one we have never met or heard of and he starts talking to us about this
procedure that he’s going to do and how they are going to treat him with 2-3
years of radiation afterwards. My first
reaction is, this doctor has the wrong patient!
So of course I ask him who he is.
He had started talking to Gary before I had even gotten back there so I
really only got the last 10 or 15 minutes of this. He told me he was the doctor that was going
to do the procedure. I told him that we
had a doctor and that we weren’t sure yet what procedure was best for
Gary. He then told me that he had
already discussed this with our doctor, named the doctor and then said he and
the doctor had decided this was the best way to move forward. At this point I was furious. First of all, Gary had just had the angiogram
and we hadn’t spoken to our doctor yet of the results, hadn’t had time to
discuss things between us and we were being pushed into a procedure that we
both felt was the wrong one not only that but why 2-3 years of radiation, this
wasn’t cancer. So, I told that doctor
that we would discuss things with our doctor and basically dismissed him. I had already decided that this doctor wouldn’t
touch my husband no matter what! The
following Tuesday we met with our doctor, after a lot of research and talking
to one other person that had an AVM and had had an AVM surgery we knew the only
true way to cure it was to have it completely removed. We go back to our original surgeon and he
tells us that he cannot do the surgery so he refers us to neurosurgery clinic
in Phoenix, AZ. While we’re waiting to
hear from them we hear about this amazing neurosurgeon here in Tulsa that has
done a couple of AVM successful surgeries in the last year, we ask our primary
care doctor for a referral to him. [AVMs
are extremely rare, 1% of the world’s population have them and less than ½ of
them know it and almost all of them are men.
Gary just happened to draw the short stick. Now, Gary also decided to be more difficult
and have his on the right cerebellum sitting almost on the brainstem so making
it even more difficult to surgically remove although we don’t find this out
until we go to the next brain surgeon.] This brain surgeon is amazing, although he
tells us right up front that he won’t touch Gary, he sits with us for about an
hour and explains everything in detail. It wasn’t that we didn’t understand
what an AVM is, we had read everything we could get our hands on, but he
actually made us understand why he and most every other surgeon was afraid to
touch him. He made us understand why he
too felt we needed to go to Phoenix, AZ for the surgery. He said that these surgeons in Phoenix were
the surgeons that brain surgeons referred the cases they couldn’t touch to so
they were the specialists of the specialists.
We had gotten a letter back from Phoenix the day before accepting our
case and I had brought it with us so I took it out of my purse and handed it
over to him and he read it. He handed it
back and said, “Go to them, they will take care of Gary.” This was on the 20th of
January. We called Phoenix when we got
home and they called us back on the 23rd of January they said they
had to find a date that would work for the two doctors to have their schedules
working together. I called them back on
the 26th and found out they were both leaving to go on vacations
back to back and begged for a quick answer.
They called me on the 30th and said be here on the 31st
of January at 2pm for an appointment. We
flew in that morning and were there for 2pm on the 31st of
January.
He had the surgery on February 2nd, 2017. He’s making an amazing recovery. We also found out it wasn’t an AVM it is a
Dural Arteriovenous Fistula. We’ll call
it a fistula for short, which is still rare but not as rare or as scary other
than where it’s located or the size of it.
He’s doing great, recovering much faster than they expected. We’ll go back to Phoenix in August for a
follow up and I believe a mini-vacation to enjoy it while we’re there this
time. We are also doing follow up here
with the last neurosurgeon that we liked so much. We saw him this morning and he’s pleased with
the progress. Gary has returned to work
and everything checked out well.
I am so glad we did not let that first surgeon bully us into
that procedure he tried to do! I would
suggest everyone ask questions, research everything and try to get as much
information as possible so that you are as well informed as you can possibly be
before you have any surgical procedures done.
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