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Introduction

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.


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Comments

  • LizLiz Posts: 9,706
    hello jason

    please click on the link for useful information

    Liz, 

    Veritas-Health Forum Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • nutcase007nnutcase007 United StatesPosts: 877
    jason03276 - Sorry to hear what you have been through!  Please post any updates, questions or thoughts.    

    Do your due diligence, trust you know your body and question everything if it does not fit.  Advocate for yourself and you will be surprised what will be revealed trusting your body and instinct.

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  • Ellen625EEllen625 New Jersey, USPosts: 757
    Hi Jason
    After reading your story,  I have no words. You have been through hell. Wow. I hope you continue to heal and find some relief.
    Ellen 
  • Sheri76Sheri76 Michigan Posts: 646
    How awful that must have been, and trying to recover from! 

    Hoping your recovery starts giving you immense relief! 
  • mylangracemmylangrace LouisianaPosts: 2
    Hi Jason. Thanks for sharing your story. I'm Lisa from Louisiana. I am almost 50 years of age and have dealt with chronic lower back pain since my early 20's.  I've had CT scans, MRIs, and X-RAYS.  Drs say say they see nothing warranting the pain I experience.  My pain is in my lower back and right buttock.  The pain level varies sometimes it is so sharp in my buttock it hurts to sit and lay on my right side.  Other times it is manageable without pain meds.   I take ultram and muscle relaxants.  I also have taken Neurontin in the past.  For the last three months I've seen a chiro for upper back pain and she's been working with my lower back too.  It helps upper back tremendously.  However lower is still an issue.  In the last two-three weeks my buttock pain has been sharp and constant.  I have also started having pain in my right groin.  I'm using patches now in addition to taking ultram every 4-6 hours. I haven't see the chiro in a few weeks because the last time I saw her something in her tone and facial expression reminded me of what I've seen over the years.  ''It's not unusual to feel that way, if you exercise and lose weight it should help."  I'm sure she means well but I know my pain is real.  Even when I was 100 pds lighter I experienced the same pain. However I do know that weight loss and exercise would help my overall well being.  I struggle with depression so I take meds for that too.  My PCP is very supportive.  About 6 months ago I shared my frustrations with her.  She acknowledged that my pain is real it's just that whatever causing my issues is not pronounced enough to see.   That helped.  I know what I feel is real.  The pain is continuous so I push through regardless.  I sought out information because of the groin pain.  It is constant and severe.  Not sure what's happening. 

    Thanks for letting me share.  
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  • mylangracemmylangrace LouisianaPosts: 2
    Hi Jason
    As I read your story I reflected on
    my husband's experience.  About 15  years ago he began experiencing low back pain. At the time I was seeing a physical therapist and I shared his symptoms with her. She suggested ice and exercise which were no help. She agreed to see him and tried to get him to do a leg lift and he couldn't. She sent us to our PCP and told us to ask for a MRI. The same day he had the MRI the doctor called and told us to go straight to the hospital. They found 3 abscesses around his spine...1 at the top and 2 lower. This begin a series of hospital visits for the next year. Eventually after a biopsy it was discovered he had Potts Disease, TB of the spine.  I did my research and learned quite a bit. His lower back pain was because the infection had surrounded his spinal column. Skin TB test were negative because the infection was encapsulated. Surgery was suggested but after the surgeon met with us he decided against it because my husband could still walk.  He was afraid of nicking a nerve causing paralysis.  One good thing about that trip to New Orleans was that they were able to manage his pain.  Our PCP eventually found a radiologist at a teaching hospital who was willing to treat him.  The dr inserted tubes in each abcess which had to be irrigated  3 times daily. They stayed in for about a year. Meantime he was put on a round of TB meds.  His TB was drug resistant so that was something else we successfully dealt with. 

    As as a result of Potts Disease, his spine collapsed because the infection softened the pain.  He was 6'1 and now he his 5'8. He has a significant curve and has to take pain meds for the rest of his life.  He started out at 100 mg of Methadone daily. He has worked himself down to 20 mg daily. He see pain management  dr monthly. Sometimes he tries skipping the pain meds because he thinks they aren't making a difference but without them he cannot stand straight up and can barely walk. 
     
    He is able to work and lead a full life. It was a long process to healing. 

    Doctors thought he would be paralyzed by now but he keep pushing forward.  

    Thanks for allowing me to dhstd
  • SavageSavage United StatesPosts: 7,385
    hello mylangrace!
    welcome to spine-health
    please click on link for helpful information!
    Sue
    Honorary Spine-Health Moderator
    -------------------------------------------------------------------------------------------------------------------------
    Please read my medical history at: Medical History

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