I know, I have been less than stellar at keeping up, but that's because A LOT has been going on. If you recall, I'd just been released from the hospital last we met. Let's pick up our story from there. Beware, this is a long chapter in this story!
The morning of Monday, April 23rd, I awoke and eagerly completed my morning ritual. I was excited to get back to work after eight days in the hospital. First though, I was expected at Big Academic Medical Center for yet another scan. This was the last screening I needed before the motility specialist would clear me to see the surgeon to explore surgical options for treating my gastroparesis. I had already had a four-hour emptying scan and a normally abnormal MRI scan of my brain in the weeks before. I and my motility specialist fully expected this last test to come back normal as well.
The test, an ultrasound of the arteries that feed the gut, is done to rule out a very rare syndrome called Median Arcuate Ligament Syndrome. The disorder has symptoms very similar to gastroparesis, but unlike GP, MALS can be corrected with a simple surgery. It rarely causes symptoms which is why we fully expected the scan to be clear. The tech who performed the ultrasound had a bit of trouble seeing what he needed to, but he got the necessary images and sent me on my way.
The rest of Monday and Tuesday passed rather uneventfully aside from some email traffic with Dr. Lungs as we tried to get a handle on the cough. We agreed that I needed to see the motility specialist to get her opinion. I called to make an appointment, but the soonest available date was in July. On Wednesday when he asked, I gladly gave Dr. Lungs her information with the hope that he'd be able to get me in sooner. I worked from home that day, as has become a great strategy to help me conserve energy in the middle of the week. Around five o'clock that night the motility specialst called. She is always very to-the point when she calls and this time was no different. She had checked my chart while disscussing me with the GI fellow who'd seen me in the hospital. She was surprised to find that the results of the ultrasound I'd had were already back. She was even more surprised to find that the ultrasound had come back showing "severe" stenosis or narrowing of the celiac artery. I had Median Arcuate Ligament Syndrome! She said that she was writing an email to the surgeon who could correct the problem and wanted me to let her know how things progressed.
I was ecstatic! There was a possibility that my symptoms stemmed from MALS and not GP! I immediately started planning a comeback tour of all of my favorite restraunts, dreaming of the day when I could start enjoying food again.
Thursday during a work meeting, my cell phone kept vibrating. Twice I ignored it. When it rang the third time, I ducked out of the meeting to answer it. I was shocked to discover that the surgeon's office was calling already. They were so insistent because they could see me that day! I hastily made arrangements at work to take leave that afternoon, and set off for the appointment just a few hours later.
After making my way to the surgical clinic, checking in and waiting an absurd amount of time in the exam room, I finally met Dr. B. and his Fellow. Dr, B. is a kind yet quiet kind of guy. He quickly understood that this was far from my first time at the surgical rodeo and realized that I speak medicalese fairly well. He set about explaining the procedure I would have, even drawing a diagram of what my arteries looked like. Basically, he would go in and unwrap the nerves and other structures (like my diaphragm) that were putting pressure on the celiac artery and causing symproms. He said I would need one more scan to confirm the compression once and for all, but gave the forms to schedule the surgery anyway, as the ultrasound was definitive enough in his book. He sent me off to have pre-op labs drawn, and then to see his assistant to get on the OR schedule.
The blood draw was quick and painless. The scheduling was a little more complicated. My dad really wanted to be here for the surgery despite the fact that it would be my 10th (ish, I think I eventually called it number 12 on tge day of, who knows?) surgical experience. So there was a bit of coordination that had to happen. I left that day with a date that worked for him, pre-op instructions and some excitement tempered by the reality that the surgery would not in fact cure me of the gastroparesis. The surgeon's hope was only that I would see some symptom improvement Maybe even enough that the gastric nuerostimulator wouldn't be necessary. He said that every person he had seen who had MALS fared differently and that improvement wasn't consistent enough that he could give me any odds. He also said that the stimulator would still be an option for me if I didn't get enough relief. There was certainly a lot to consider.
By Friday morning, there were new plans to be made as the date of the surgery was moved. My dad could no longer come, but I enlisted the help of my brother and eagerly awaited the new date, June 18. What a week it had been. Monday, I went to have a scan that everyone assumed was a formality. By Friday I was scheduled for surgery. Yikes!
First I needed that confirmatory scan, an MRA. That is a Magnetic Resonance Angiogram. It's like an MRI, but it uses sensors and contrast dye to get images of the blood vessels. I had that done at the end of May and quickly heard from Dr. B. that it did confirm MALS and we were a go surgery, now just three weeks away.
Next up: Showtime!
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