Discovering The DISH
My husband Adam, oft referred to as My Beloved and sometimes referred to with more colorful and inappropriate terms, had taken The Boy and I out sledding during the great snows of this year. We were at Lindley Elementary, widely renowned for its excellent sledding locales. After many runs and near collisions, Fate decided to step in and chuck Adam about 6 feet in the air, landing on his left shoulder and back. We initially shook it off and Adam even went sledding again that evening though I believe he took it slightly easier. Days passed and though he was sore, grumpy, and just a little bit pitiful, we assumed all was fine.
How wrong we were. I had taken the following Thursday off to see the accountant, go to a photographers’ fete, and then do a boudoir shoot. Adam called me half way through the shoot, I thought, to get details on what she was wearing, but instead he said he was at the local hospital getting an MRI and “seeing if my neck is broken.” Of course I finished the shoot, but then I headed over to find out if he was exaggerating, or if I should begin having a panic attack in earnest.
The doctor was very nice and told us she had good news and bad news. Good news, no broken neck so no HALO, bad news, Adam has a degenerative bone condition called Diffuse Idiopathic Skeletal Hyperostosis (DISH). In essence, he is a truly committed bone grower, with a particular love of growing bone spurs in inappropriate places. The MRI showed that there were a series a SERIOUSLY large bone spurs running down the inside of his spinal column which were choking off the necessary space for the spinal cord to float freely as it should. Then the doctor said, “I’m not quite sure how you are not already paralyzed…”
When A Doctor Tells You They’re Surprised You’re Not Paralyzed, You go Immediately To A Neurosurgeon
Right. A doctor being surprised you’re not already paralyzed can send you sprinting to your nearest friendly neighborhood Neurosurgeon. A few neurosurgeons, CT scans and MRIs later we had chosen a doc, picked an imminent date, and began the arduous and unlikely journey to mental preparedness. The Neurosurgeon was a down to earth and very direct guy who told us a few interesting facts about DISH.
- Its usually seen only in Asian men over the age of 50.
- Its almost always seen, when in the spine, in the lower spine – not in the upper spine like Adam’s.
- That if the growth in the spine had occurred rapidly like it would with a ruptured disc, that Adam would absolutely be paralyzed. The saving grace here seems to be that the growth has been occurring slowly over time allowing the body the time to adjust.
- That this was the “toughest ” case he had ever seen in his 21 years.
- Finally, that since Adam was such a strong weight liftery, soccer playing, active sort of guy, his muscle strength protected him during the Snowmageddon incident preventing further compression of the spinal cord which would have resulted in paralysis. So yay for the gym, people!!!
The surgery for DISH is a complicated but actually fairly common procedure that is the same as any performed on people with slipped or ruptured discs. Open an incision in the front left of the neck, pull the trachea and esophagus aside, cut through the vertebra, remove the damage (i.e. bone spurs), fill the drilled out area with a cage of synthetic bone, and then fuse the neck with a titanium plate and screws. Child’s play really. Adam’s complication is that bone in DISH patients is REALLY, REALLY hard. They have to chip away micrometer by micrometer and it takes forever.
The Waiting Is The Worst Part (I Thought…)
So Adam and I reported for surgery on February 17th at 10am with family in tow. My Momma and Daddy, Adam’s Mom and Step-Dad and The Boy were there to help me fret while Adam was prepped, probed, and fixed. The hospital has this really cool system where you’re patient/loved one is “tagged” with a number and you can follow their progress from pre to post-op on a screen. So I was incessantly running back and forth checking on what I strongly felt should have been a short procedure. I was wrong. Hours and hours and hours later, the doc came out, drenched in sweat, and told us everything went really well but it was an unbelievably tough surgery to dig out that bone. I went back to recovery and Adam was wonderful, alert, sore of course, but really good. They rolled him to his room, he slept and we were hopeful to go home the next morning.
The Fateful Words: “I’m Going To Order A CT Scan Before You Leave.”
The Doc came in and said, “I’m going to order a CT scan before you leave. Just to be sure the screws look good.” We headed down for the scan and then the results came back. There is more bone that is still compressing the spine. Here’s the problem with bone – it can hide behind other bone and you can’t always see it on a scan. Here’s the problem with surgery – the doc is operating through a tiny area, behind vital things like breathing tubes, all while trying to avoid the spinal cord because if you screw that up, it’s really bad. Anyway, the result was, a second surgery was not only necessary, but had to be performed within 48 hours before the bone began to harden and the screws set.
Surgery, Round II
So Adam wheeled back into surgery on February 19th. This time, the plate and screws would have to come out, the construct would have to be removed, the bone would have to come out, the construct replaced, the plate and screws put back in. The surgery took far longer than the first one. I thought I was becoming an old pro at this surgery schtick but I was so wrong. When I saw Adam after the second surgery, he was like a different guy. He was exhausted, shaky, and just miserable (the doc wasn’t much better). One of the bone spurs had fused with the Dura (the small sac surrounding the spinal cord which contains the spinal cord and the spinal fluid) and torn away allowing the spinal fluid to leak out. Spinal fluid leaks can be hell on wheels. The body produces immense amounts of fluid which is great and necessary when everything is contained, but when there is a tear, it wreaks havoc. Some people suffer from “migraines x 10″, others, like Adam never feel the effects of the headaches but have many other problems. Normally, a few days flat on your back can correct the problem, but not for Adam. From the moment he woke up, he had vertigo, nausea, a wicked case of post-nasal drip, and his left arm wasn’t working right.
#ihatehospitalliving
So what was initially supposed to be a 1 night stay became an indefinite love-hate affair – love the staff, hate hospital life. Social media, Twitter and Facebook, have become my dearest amusements and forms of communication with the outside world. We have received a tremendous amount of support, humorous ribbing, and dear friends offering a shoulder to cry on and almost more importantly, outside world food. Also amusing on the love-hate scale is the litany of very weird hospital rituals and concepts of “healthy food”. I will only complain openly of powdered eggs and the “Special of the Day Sushi Roll”, not tuna sushi roll, just sushi roll. I will also only complain openly of the utter lack of privacy. A hospital is a very voyeuristic sort of place where every door is open, as is just about every hospital gown. My new favorite Twitter hash tag is #ihatehospitalliving. I truly hate it. Here are a few very humble suggestions to hospitals everywhere:
- Would a hospital bar kill you?
- Bring in some outside food vendors-everyone, staff included, would be less hostile.
- Close doors. I just don’t need to see that.
- CABLE! If you are stuck in a 12×12 room for hours on end, give me my MTV.
- Free Wi-Fi that blocks every possible website of interest is not free Wi-Fi.
After 6 days of tests, tests, confusion, and more tests, the vertigo, random numbness, and other maladies were deemed better to treat with “wait-and-see in the comfort of your own home.” So we happily wheeled down to the car with our masses of pillows, blankets, pink plastic hospital going away prizes (bed pans, kidney shaped trays to capture stray stomach swellings, etc.) and got the heck out of Dodge.
The Waiting Is The Worst Part (In The Comfort of Your Own Home)
So we were back to our 800 sq.ft. castle, fending of the attentions of a deprived Boy and 2 extremely large lap dogs, and Adam began the slow wait-and-see process of healing. While things were by no means back to normal, they really were more tolerable and for the next 3 weeks we waited and saw. What we saw were spinning rooms, no abatement of numbness, and a creepy swelling incision site. So back to the MRI, back to the hospital, and back under the knife.
Photography as Therapy
While I would have loved to have photographed this entire saga, Adam was, quite naturally, uncomfortable with me sticking a camera in his face every 37 seconds so I bowed to his wishes and refrained. But then, in the midst of the crashing panic that came with checking into the hospital for the 3rd surgery, he gave me the best gift. ”Get your camera.” Photography is not just a job, its not even a passion. For me it is a way of breathing, a way of processing, a way of being. For Adam to give me this, allow me to photograph him at his rawest, to let me deal with this in my own very necessary way, has been remarkable. So I have photographed almost incessantly since we checked back in. I wish I could post some for you now but soon.
3rd Time’s The Charm? We Certainly Hope So…
So while I snapped away, the surgical tech rolled My Beloved away from me and the process of waiting began all over again. Hours later, the doc emerged with the news that he had placed 2 shunts to drain the spinal fluid, both of which failed, removed over a cup of spinal fluid from the reincised surgical site, sealed the Dural tear with what I like to call spackle but what he had a much more doctory sounding name for, and put my husband back together – again. The surgery was frightening, and we’re still awaiting the results of the shut that has been in place for 4 days now.
Our friends and family have come to the rescue too many times to count and I have come to the realization that medicine is a mysterious, awesome, and completely humbling thing. We have no true control over our lives and just like when I am photographing a wedding or other event, sometimes there are things that are just outside my control. The human body is a delicate structure and when you muck around with it, even for highly necessary reasons, things don’t always go according to plan. I cannot say enough good things about the people who have made this nightmare less scary and as comfortable as they can.
As of this moment, now 6 weeks into this saga, I am sitting in a dark room, hearing the whirs, drips, coughs, and random racket of a never quiet hospital. Adam is trying desperately to sleep. We are missing our Boy. Even though I know all of this was and is necessary to the future well-being of my family, I must admit, there are few events in one’s life that surpass this in difficulty. Simply put, I want My Beloved and I to be well, to be home, and to be done with this. I am also aware, however, that it is the trials in our lives that put everything into perspective. To live a life without regret – that is my aim. I cannot achieve that if I can’t learn from events like these. So I accept my burdens, lean on my family and friends, and try to glean the best from this not so great experience. It all boils down to this – I love my husband and he is worth all of this and more.
