Talk about being between a rock and a hard place.
Except for maybe the time when I was pursuing lung transplant, this has to be one of the toughest decisions I’ve ever had to make. I sure hope it’s the right one, as it could have a huge impact on my quality of life going forward. Not that it’s the greatest to begin with. What’s frustrating is that it’s one of those situations where the outcomes of treatment are very hard to predict. Some do well, some don’t. Thats just the nature of this kind of surgery and disease process. In the end, at least for me, it boiled down to placing total trust in my spine doctor. Im relying on his skill as a surgeon, while at the same time having my best interest at heart.
After doing as much research as I could about my cervical myelopathy and consulting with all my doctors individually, we all agreed that despite there being a significant risk for respiratory complications following surgery, that delaying or putting off surgery all together could be potentially catastrophic. There’s the very real possibly of eventual paralysis and/or a myriad of other bad things that can happen if this condition progresses. It’s not a matter of if, but when. So, with everyone on board and all the last-minute pre op tests completed, I’m now cleared to proceed. Out of an abundance of caution, they moved the surgery date up to April 18th, just a couple days from now.
It’s no secret I spend a lot of time in the hospital for my asthma and other breathing issues, but other than the dilation procedures I’ve had for my PGS and a tonsillectomy in my early 20’s, I’ve never undergone major surgery before. Apparently, this particular type of surgery can take 5 to 6 hours to complete. I have no idea what to expect afterwards, other than what I’ve been told by my Surgeon and others who’ve undergone similar operations. It’s a given that Ill probably experience substantial pain and won’t be able to move my head very much for several weeks. But, in addition to the expected, there’s also the unknown factor, namely, my lungs and how they’ll react to all of this. Will they behave, or will I have to deal with, not only with post op pain, but breathing problems as well? What if I have to cough or I start shrugging my shoulders because of respiratory difficulties? Or what if I wake up delirious and start thrashing around. Will that cause even more pain or screw up the incision site? It’s anyone’s guess, but I think about such things, because if my previous hospitalizations are any indication, it’s pretty likely I’ll have at least some “issues” following such a long surgery. Knock on wood this doesn’t happen, but if does, hopefully we can get things under control quickly, so this doesn’t turn into a prolonged hospital stay.
Fortunately, I have an excellent multidisciplinary team of doctors and caregivers who actually communicate with each other on my behalf. Im also privileged to have my surgery done at one of the top medical centers in the country. UCSF was ranked the #1 hospital in the US for Neurology and Neurosurgery. In preparation for my upcoming surgery, the Anesthesia people spend almost an hour with me going my medical history, baseline lung function, my propensity for sudden asthma attacks and my justifiable fear of not being sedated enough when intubated. Because I’m a super high-risk patient, together, we’ve come up with various back up plans should things get dicey, or if they have difficulty getting me off the ventilator. As my Surgeon put it, we’ll go into this surgery prepared for the worse, and hope for the best. I definitely feel more at ease after talking with all these people.
Still, this whole cervical stenosis business is very stressful. Over the years I’ve developed various coping mechanisms to deal with my chronic breathlessness, and in a sense, I’ve become comfortable with my lung disease. But now that I’m faced with a totally new and different set of challenges, one that includes pain, I’m afraid it will disturb the delicate balance thats taken me so long to achieve with my breathing. Hopefully that won’t be the case and I’ll find ways to adapt like I always do.
As difficult as the surgery portion might be, the real challenge lies ahead with the rehab phase. Recovery from this type of surgery varies wildly, but most people start to feel better in about 3 months. If things go as planned, I should be able to begin Physical Therapy sessions about 6 weeks after surgery. After that it’s up to me. Full recovery can take up to a year. I just hope I emerge from this process better than when I entered it.
Whatever the outcome of this surgery, I have confidence that my caregivers will do whatever it takes to get me back on my feet and on to a semi normal life as fast as possible. After all, Im the dude who’s completed 9 full marathons despite my limited ability to breath.
Thats the latest. I’ll try to write more after the surgery. Thanks for listening.