Hi I'm Jason
About a year ago, I developed an mssa infection in my spine. At first, it presented like the flu with fever, chills, vomiting, excruciating pain in the gut. Went to local ED and after a barium and CT test... I was sent home with viral enteritis and some percs for pain. About an hour after I got home, got a near pa nicked call from the ED doctor pleading for me to return asap.
About an hour later I'm back at the ED and everything that has happened since has been surreal.
Spent 6 days in the hospital. MRIs, CT scans, biopsies, and a cold intro to pain management.
I found that I had an active infection in T11 and 12, the disc was destroyed and the bone/endplates were being eaten away by the infection. Osteomyelitis was a new word in my vocabulary.
I had a picc line placed and some harsh antibiotics were started. The picc line was now also the main route for pain management. Prior to my ED visit, I had never really had any experience with opiates before, except for Tylenol with a kick. We quickly found that opies did not work well. Toradol was the most effective pain med found. Only downside.... one can only use for 5 days as it is harsh on kidneys.
After 6 days was kicked loose from inpatient status to home with a picc and an arsenal of these little infusion grenades with antibiotics. Taken every 8 over 30 mins for 8 weeks. Then another 8 on oral antibiotics.
In the interim, I was paired with a new pcp for aftercare. After a short go with various oxy* products and telling my new doc they were not working... was put on gabapentin for nerve pain.
Things were not progressing much. I was in constant pain with little to help. Saw a spine specialist, and was referred to a specialist at a cutting edge teaching hospital. The first doc told me straight up, my spine was pretty bad and needed a corpectomy at t11 and 12.
In the interim, the infection had returned and i started having some additional pain. My eyesight had a noticeable change. I had auditory issues where common sounds became painfully loud, and the night sweats. Saw another provider in my pcp's office, and he kind of got concerned. My optic discs were quite swollen and he was concerned the infection was back. After a fight with insurance to approve an emergency mri... got it done. Full spine mri sequences over 4 hours. Growing up catholic.. I thought only hell could think of such torture as laying on a hard mri table in pain.
Mri came back inconclusive but it was suspected the infection was back. Spent two days at one hospital before being transferred to the facility I was to have surgery at.
When I got to second hospital, it was determined that yes my infection was back. I was septic, I was in metabolic acidosis and I was going downhill quick. In 36 hours I was having not one... but two surgeries. I was going to have an anterior entry corpectomy with expandable cage and then fixation to stabilize my spine.
Over 12 hours, I had another mri for the brain. An echo cardiogram, and a host of other tests. I also lost access to one arm due to a handful of antibiotics going in. I stopped being able to urinate on my own. Got a cath for that. Found I had a wedge shaped fragment of my spine lodges against my spinal cord. I had a very large abscess pushing against my aortic wall.
I was given a pca with a generous and continuous run of dilaudid for pain.
The surgeon came in to talk to the wife and I and I was given the news. Aside from the infection, my spine was collapsing inward. Within a week or two I was expected to be paralyzed. My bowels and urine would no longer be under my control. If that happened. It would likely be permanent. The other option were the two surgeries. I was told that a two level corpectomy was not common and that the expanding cage was going to be at its mechanical limits. I needed my spine stabilized. This didn't require much decision making. This surgeon cleared two days of OR time already scheduled for several teams.
Surgery 1. Corpectomy with cage. 13 hours in OR. During surgery my kidneys failed due to blood loss. No urine output. Numerous pockets of active infection cleaned and washed out. Bone still reacting to infection. My surgeon is a 31 year surgeon. Literally one of the best in the country later tell me he was scared when he saw what was inside. They completed this one. I took a beating. The cut from just below left shoulder blade to navel. Cut out 10th rib. Dropped diaphragm, deflated my left lung and then did the ortho work on spine.
Spent 12 hours in icu with a bedside nurse at all times and a respiratory therapist within earshot. I remember breaking through sedation numerous times. I tried to communicate but couldn't being intubated and arms restrained. Hell I tried rapping in Morse code. Seems noone understands that anymore. Someone finally brought in a letter board. I was able to poke out I was in severe pain. I was later told specifically I pointed out pain was hell. Legs hurt. Eyes feel like sand in them.
I was hit with ketamine, fentanyl and propofol in larger doses to keep me out.
Day 2. Second surgery.
This one was to fixate the spine. I had two 11 inch rods with hooks put in. This surgery I bled out a lot. 7 hours later. I was in in ICU for 10 days. 5 of which I was intubated and on a vent.
I was told by my wife that during my time in lala land... I broke through sedation numerous times. I apparently flipped an anesthesia doctor off because he didn't grasp how the letter board let me communicate.
I lost 8 days being held under. I guess some were impressed at my difficulty in being kept sedated.
It took a while to gain cohenerency again.
When i had my first clear thoughts again... I was in the middle of being dialyzed. It's scary waking up to a machine pulling and pushing blood into and out of your chest with tubes hanging out your neck. My hands were still in soft restraints due to agitation from the meds. 10 days before I could grasp who I was, where I was and when it was.
Spent another 8 days in a special spine care unit.
I remember learning to walk again. Those first damn near impossible steps.
That was this past april.
I learned that I lost 7 liters of blood. I had over 16 liters of blood, blood products and fluids used to resuscitate me in the OR.
After discharge, I found out my esophagus was damaged during surgery. I developed a 15cm long stricture that narrowed so much, that I was not able to swallow my own spit. I've undergone weekly procedures with anesthesia since may to open my esophagus.
Now 4 months out. I am walking with a cane. Doing fairly well given the totality of circumstances. During a followup visit with my surgeon... he asked me and the wife if I would mind showing my scars to some colleagues. He mentions he would appreciate me offering a visual because he (a 31 year veteran neurosurgeon ) couldn't describe it enough for them to appreciate.
Now I'm left picking up pieces and learning how to live life with chronic pain. Up against a wall as far as what I'm able to take for pain. What my recovering kidneys can clear.
Thank you to the others out there who share your stories. Some experiences here have helped me immensely. Thank you for this resource.