Near Death Experience!
At times, it flares, but because I am used to it and it has gotten worse over the years, I didn’t really notice the several years that it got progressively worse but never really had any relief.
The pain was dismissed by doctors
I had told doctors about it before, but they all dismissed it as just a normal part of the progression of untreated SMA. I did not want to take narcotics because of it as I had seen so many of my peers growing up have issues with pain medications throughout the years, so I just lived with the pain as it was.
When I started college, my back and side started hurting worse. I started having pain in my ribcage that I assumed was a heart issue.
A new GP who assessed my symptoms
It got worse at what I thought was random times during the day, but especially after I ate. I discussed the issues with my new GP and she removed SMA from my health picture.
She assessed my symptoms and she asked if I had ever had my gallbladder removed because the symptoms I was showing presented like gallstones. And I fit a few categories that had gallbladder issues as a common occurrence: Forty, Fair, Fat, Fertile, and Female.
Surgery to remove gallstones
She sent me for an ultrasound that confirmed I had gallstones and needed to have surgery to remove them. I put it off for a while because I was afraid of going under anesthesia for something that was not life-threatening, so I wanted to wait until I could not put it off anymore.
That time was not long after being diagnosed with gallstones. I was sitting in a college class surrounded by peers and I thought I was having a heart attack because chest pain and nausea flooded my body.
An ambulance was called and at the ER, it was determined that my gallstones had caused a blockage and needed to be removed. Surgery was scheduled and I made sure to have the surgery in the same hospital as my neurologist.
Communicating my needs to the team
I had him recommend a surgeon and I had the whole team discuss my situation before my surgery so everyone knew what to expect.
On the day of the surgery, I met with the anesthesiologist who was going to be in charge of the scariest part of my surgery. He told me that he had spoken with the team and was prepared to bring me out of sedation if anything went wrong. It was a surgery that could be performed at a later time if need be and his goal was to not risk my life for this surgery.
He asked me if there was anything I would suggest to him for the procedure. I told him that my jaw was fused to only open a few centimeters and that if my head leaned back, my throat would close.
This concerned him enough that he had a variety of intubation tubes to help in the surgery. When I was being intubated, the only tube he could use was a laryngeal mask airway or LMA which is usually used on babies and children.
Complications from the surgery
When trying to fit the other tubes, he injured my throat a bit which caused it to bleed. The surgery went smooth, but as they were bringing me out of anesthesia and removing the tube, my throat started bleeding and I asphyxiated on my own blood.
I went into respiratory arrest and the team suctioned my throat and got me back breathing as swiftly as they could. It happened again as I was in recovery.
I just could not breathe with the amount of blood in my throat, so once more I went into respiratory arrest, and once again the team stabilized me. Recovery took a few hours longer than expected, and I was moved into an ICU bed.
My best advice: communicate with your team
I was in ICU for two days and I was released from the ICU because I had recovered so quickly from my surgery and the respiratory arrests. Having surgery as a high-risk person with SMA can be very scary, but the best advice I can give you is to make sure your team is aware of any body quirks you have (like my throat closing when I tilt my head back) and that they are all on the same page for the procedure.
I learned a few things from my gallstones: that doctors can sometimes dismiss a real problem because they assume it’s a chronic health issue, that I can overcome my fear of anesthesia to get my health needs met, and that I need an LMA tube if I am ever to go under again for a procedure.
Have you found an SMA specialist you trust?