I had my imaging
appointment at Boston Children's Hospital this past week and it was a much
larger appointment than I had anticipated. It was the first time I went into an
appointment by myself and took the trip into Boston via train and subway. It
felt more real when I went in myself and hit me a little harder knowing that
this was truly a chronic illness. Most of the time the people I'm with
encourage me that maybe this will be the last time but this time I didn't feel
that way. I spent two full hours with my surgeon throughout the imaging and
discussing the next steps and actually felt like I got to know the team a
little better. After all, it wasn't going to be the last time I saw them and I
felt like I should know them better and they should know me better. It
didn't feel like they were putting on a "professional show" for me;
they were truly being themselves and made me feel more at ease with laughter and
medical jokes.
When I got into the
interventional radiology department, I was given an IV for the new contrast
they were going to use with the ultrasound. Despite how friendly the nurse was
who gave me the IV, she missed several times and I nearly had a panic attack in
the bed because although I've had many IV's I am still not good with needles.
They were concerned about me having an allergic reaction to the contrast
because I have so many food allergies and the contrast apparently had something
to do with eggs. They also haven't used it on many vascular anomaly patients
yet, if any so this procedure was extremely new. They watched my oxygen levels,
heart rate, and blood pressure and monitored me closely throughout the entire
imaging. I got very nervous because if I was to have an allergic reaction, I
was going to be admitted overnight and I was at the hospital by myself.
With all the
monitors attached to me it felt as if I was inpatient. They gave me a marker to
draw circles around the areas that hurt the most although it seems like when
the FAVA hurts, all the tissue around it hurts so it's hard to pin point an
exact location. In the room there were two surgeons, Dr. Shaikh and Dr.
Palotier, along with two nurses and many med students. They were reviewing my
old ultrasounds and MRIs and comparing them to the live regular ultrasound
before they did the contrast. What was odd about the contrast is that the full
effect only lasted about 10-20 seconds before it started to fade and they could
only give me a certain amount every 10 minutes.
Therefore, they had to work quickly when the contrast was given. We did
ultrasound imaging for over an hour and I had three syringes of contrast. The
only side effect I had was dizziness, feeling lightheaded and a bit foggy but
the feeling went away within about 20 minutes. It was very overwhelming hearing
them talk in all the medical terms trying to figure out where the FAVA was and
where it wasn’t but I loved hearing them discuss it in front of me. It wasn't
as clear cut as we had hoped and there was a lot of confusion at first.
To my surprise we
found the areas that were previously cryoablated and it showed in the
ultrasound that it had worked and killed the cells! It appeared almost as a
black hole where the cells were no longer there. To me it was pretty cool and
reassuring that the previous procedure wasn't useless. However my pain is still
there in the same locations like I posted about previously and we found
multiple untreated masses close to the area that was previously treated. Thanks
to the contrast, we found that both masses around the locations where I had
previously had cryoablated were just missed from the previous cryoablation and
they are superficial and will be treated next summer after my college semester
is over. They did find another small mass that was deep and connected to my
sciatic nerve and close to my hamstring which sounded worrisome to me but they
reassured me that they aren't worried about it doing any damage because it was
so small. However, it is untreatable because
the risk of paralyzation is too great to risk. Therefore, it may cause
me some pain but as long as it doesn't do any damage I'll be content. It was
scary but now I'm content and am trying to manage the pain before the next
cryoablation in the summer.
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