I kept hoping and praying, haunted by dreams about my upcoming vascular surgery appointment. After the last visit with a highly recommended vascular surgeon (posted here) I just knew I couldn’t handle yet another doctor making me feel completely invalidated by saying “while it appears that you do, in fact, have these vascular compressions visible in multiple scans, the syndromes don’t exist and you can’t have that many rare conditions anyway.” After all of this… the nonstop tests, countless doctors appointments, misdiagnosis, and judgments against my mental health status… I just knew I wouldn’t be able to handle another major disappointment. But I also can’t keep living this way either.
Figuring there’s nothing to lose at this point, I asked my cardiologist for a referral for a second opinion at our last appointment together and he gladly obliged. To my surprise, he put it in as an urgent request. Just two days later I received the call from the vascular surgeon’s scheduler with an opening for the following week. It took me almost four months to see the last surgeon so I was pretty impressed. My records, however, didn’t make it on time for how quickly they scheduled me and the doctor was going need the actual imaging, not just the reports, to do my consult so I had to reschedule. In fact, my husband had to drive me over an hour into the city on two separate occasions to physically pick up my records because the scans were done at separate hospitals. Both kept ignoring requests from both the new hospital and myself as well, despite writing “urgent” all over them. So frustrating!
Although I was nervous about starting over at a completely different hospital because I was completely comfortable and used to my current site (I really am a creature of habit), the cardiologist planned to send me to this location for the dysautonomia clinic anyway. It’s easier when my doctors are located within one location or network because of the number of specialists I have on my medical team now and it’s next to impossible to get them all to communicate with one another unless they physically working together it seems. However, this still didn’t stop my nerves about the appointment. As far as the vascular compression syndromes are concerned, this was really my last shot to find a doctor in the state who could treat these conditions. No pressure or anything.
As we pulled up, I instantly felt like the new kid in school. The campus was huge and it took us a moment to not only find the building that my appointment was in but where to park as well. We thankfully left early and gave ourselves plenty of time.
It was a good size walk from the parking garage to the building, so I was extremely dizziness and nauseated by the time we got into the lobby on the third floor. I checked in and went to have a seat. I was amazed at the size of the lobby, it looked like there were at least 50 people in there waiting. I had a sinking feeling come over me, stunned at the number of people who were waiting ahead of us. ‘Oh please, let them have a ton of doctors working today because I really don’t feel that good and I don’t think I can wait that long…” I also knew we had at least another hour or so drive back home to get through as well and all I wanted to do was go home and go to sleep.
Luckily, the wait wasn’t too bad – only about 15 minutes after my scheduled appointment time when they brought me back to the exam room. The nurse took my vitals and history before she left to bring the doctor my hand-delivered scans. I assumed it would be a while so I squirmed into the most comfortable position in my chair I could find (which was not really comfortable at all) and attempted to sleep. It didn’t last long.
About five minutes later, there was a knock and the exam room door opened. That was quick… I start to get up but I’m taken aback a bit. A young gentleman (younger than me anyways) walks into the room. This doesn’t look like my doctor… I googled him. He introduces himself as being a medical student studying under my doctor. Ohhh. Right. This is a medical school after all. He seems nice enough but still…while I can appreciate the intelligence, endurance, and drive it takes to become a medical student, I can’t help but feel slightly disappointed. Is he going to be the only one doing my consult? I have a complicated case. I’m instantly worried once again. Maybe they think it’s in my head as well and that’s why I’m only seeing a student. I’m paranoid at this point.
He takes a very short history of my symptoms, only asking a couple questions really, and then says he’ll let the doctor know. Phew. Ok. He’s just getting some information. I will be seeing the doctor then. I feel a sense of relief. Remember, I’m at the end of the road here – I need everything to be perfect. (You can’t blame me, though, for worrying after all the mess I’ve been through just getting to this point.) A few more minutes after the student left the room was there a knock on the door once again. This time, I do see my doctor (which I recognize from the internet), but nothing could have prepared me for what followed in behind him. I felt like I was going to faint…
One-by-one, medical students slowly filled every corner of my exam room.
And they’re all staring at me, intently.
Nope, not intimidating at all…
It caught me a little off-guard, honestly. Plus, I hate feeling like the center of attention. It makes me so self-conscious. I do everything in my power to have people NOT to pay attention to me. I wondered if this was normal protocol, as I had never been to a teaching hospital before. Don’t embarrass yourself, Nikki. I send a sharp look to my husband, my eyes told him the same thing I told myself. He got the point.
I tried to stay focus on what the doctor was saying, but it was really hard not being distracted. Or a little claustrophobic. With every question I answered, I saw the students take notes. I wondered what they were writing… I wondered what they thought of me. Do they think my case is interesting? Or do they think I’m crazy and making this all up? I couldn’t read their faces.
The doctor confirmed he saw everything in the scan that he saw in the radiology report. The Nutcracker Syndrome. The Superior Mesenteric Artery Syndrome. The May-Thurner Syndrome. We even all watched the scan together, where he pointed out exactly what my body was doing, where it was compressed, and how he could tell – rewinding to those parts so I could watch it more closely. He explained everything as we watched the iodine flow down toward my left kidney, only to move itself back out of the renal vein (instead of through it) and into the lumbar spine/ plexus. He said that my body learned to adapt to the compression by creating collateral pathways to compensate for the lack of blood flow, almost like a survival mechanism. Wow. The human body truly is a magical thing.
He also asked a ton of questions – specific questions – and wanted detailed answers, such as how it feels when this happens or what happens after that? I provided him with situations and stories. I pointed to where it happens. I told him how it hurts. I gave him everything I could think of at the time.
As I explained each and ever pain, he listened.
With every detail, the students kept writing.
I could hear their pages turning in the background. When it was quiet and I had given every account that I could, the doctor turned to his students, “So, do we all agree with pelvic congestion syndrome?” They all nod their heads in agreement. He asked me if I’ve heard of it, I had but hadn’t studied into too much but it honestly wasn’t a shock because it’s a very common cause of pelvic pain and many patients with either Nutcracker Syndrome or May-Thurner Syndrome have also been diagnosed with it as well. He told me to go home and google it to make sure it fit. Um, ok. No doctor has told me THAT before but sure. So I did.
The doctor says they are going to schedule venogram to confirm the diagnosis. If they can, they’ll just fix it while they are in there. They’re also going to test the pressures of the other the compressions and see if there are any further abnormalities during the procedure as well. Perfect, we’re getting somewhere.
I still had one more question, though, but I was almost afraid to ask. But I knew I needed to. I took a deep breath…
So, do I definitely have all of these syndromes?
The SMAS, NCS, MTS, and now possibly PVCS?
They actually exist and I have them?
The doctor then gave me the most profound answer I’ve heard to date.
“It doesn’t matter what you want to name them.
It’s clearly happening in your scans, you saw it.
Call it whatever you want.
Your symptoms, as you described them,
are EXACTLY what one would EXPECT you to feel.
The tests prove it.”
He finishes by saying that they are going to conference on Monday morning. Other doctors and students will watch my scans again and make sure nothing else is missed. If they do find something, they’ll call and let me know what it was or if the treatment plan is going to change, but to otherwise go ahead with scheduling the venogram. They’ll also discuss how they want to handle the three other compression syndromes in their meeting as well. I thank him.
As I’m about to leave, one of the student’s asks if he could do an in-depth interview with me for Monday’s conference. He doesn’t want to miss anything or hear it second-hand. I obviously agree and we go through it all – again. He asks more questions and then even more based on my answers. He also offers advice about things that I could do to possibly help myself from now until [surgery]. By this point the hospital was closing down around us, almost everyone has gone home for the day. But he never rushed me once. He just continued asking his questions and listening, eager to know more and ensure that he gets my story right. He’ll never know how much that means to me, the patient.
When I got home I chatted with an online friend, who also happens to go to the same hospital for two of the same compression syndromes as well. I just had to know, was this how the hospital normally treat all their patients? She said no, not usually. Maybe only one or two. “But being rare gets you extra people”. She had a large number of students during her surgery prep and throughout her recovery. They visited her every day.
It’s almost funny. When you’re undiagnosed, you hate the idea that you may not have a diagnosis because of some rare, unknown condition. You worry that nobody will ever find whatever it is and, therefore, you’ll never receive treatment to feel better. Half the time, nobody believes you anyway.
But I guess when you do finally get that rare diagnosis, suddenly you become the ZEBRA at the aquarium. Now, you’re medically interesting. Now, you can breathe.
I may not have the easiest road ahead of me, potentially filled with major surgeries and/or lots of pain. But once again, I can say I feel hope. I can go to bed knowing that I honestly tried everything that I could to take my life back, without worrying if the doctors would ever find out what was wrong with me outside of autopsy. I finally have options. A plan of attack. My diagnosis is on paper -and- it’s not a misdiagnosis this time. It is real – I saw it with my own eyes – and so did my doctors. And they believe me.
Now, I can finally say that it was all worth it.