My spine is full of shenanigans and my Specialists can’t quite find a way to fix it, not without creating even more shenanigans.
My spine is completely unstable at l4/l5. L3/l4 isn’t far behind it but the pain I experience from the severity of the instability at l4/l5, smothers pain I would be feeling in other areas of my body.
This was the verdict of a new Spinal Specialist I saw today. He was a colleague of my regular Specialist who wanted my case reviewed as it’s so complex.
He was an absolutely lovely guy and my husband and I came away, feeling the discussed plan is the right one for me, at this point in time.
The Surgical Option
The plan is not one most people would happily accept. However, I’m a realist and have done exorbitant amounts of research on spinal disease, all of which lead me to the point of acknowledging the complexity and seriousness of my situation.
I know my friends, loved ones and readers all want me to have reduced pain but I’m afraid to tell you, it’s just not going to happen.
The only surgical option is to have a cage inserted around my spine, which would basically be stuffed with bone grafting.
If I wasn’t me, surgery would be booked asap.
However, I have, as you all know, this crazy rare bone disease which causes me to have fractures that won’t heal, and previous bone grafts in my non union femur have disintegrated within a month. He explained this would likely happen with this surgery. As a result, the risk rate of me losing the small amount of mobility I have now, is incredibly high.
I would likely end up in a wheelchair and still be in excruciating pain. If the outcome was wheelchair and no pain, or little pain, then it might be worth taking the risk now. However the Specialist and I agree, being in a wheelchair with this amount of pain would lower my quality of life even more than it’s currently lowered.
It’s not the only risk factor though. I’m currently on high doses of Prednisone to help manage the spinal pain and my Rheumatoid Arthritis. This places me at even further risk, post surgery, of infection, non wound healing, adrenal crisis etc.
In short, surgery is not an option unless I get to the place where I cannot stand with mobility aids. At that point we agreed it would be worth the risk as I’d have nothing to lose.
The Rehab Option
The Specialist made it very clear, Rehab is not an option.
My condition is not one that will improve with Rehab. Partly as the broken back won’t mend and partly because the pain from the broken back, prevents me from being able to do any physical Rehab. Physios won’t touch this type of disease process. It’s highly degenerative and progressive.
The Pain Management Option
Quite simply, been there, done that. My Specialists are all happy I’m doing all I can with pain management. This includes my medication regime, my approach to life and my disease and my pain management techniques. All are on the right path.
They all reiterate I am doing the right thing trying to keep mobile as much as possible, and resting as much as I need to when pain is beyond extreme.
So What’s Next?
We monitor. I keep doing what I’m doing as best I can.
I accept it is what it is. Anyway, a physically limited life in my home, can still be rewarding.
I can at least stand upright and potter around the house with crutches, or my walker, for periods of time during the day.
I can sit in our beautiful courtyard and enjoy the fresh air, flowers, tea or coffee and the company of my beautiful husband.
I can still write, blog, run a forum, volunteer for not for profit organisations, all from home.
On better days, I can enjoy a car ride with my husband in our local scenic country area and perhaps a picnic can be a goal.
I’ll be seeing my usual Spinal Specialist regularly and when we both get to the point of saying “the wheelchair is upon us”, I will be whisked into surgery. We’ll be at the point of the benefit outweighing the risk.
Our Doctors are trained to “do no harm”. To conduct surgery on me at this point in time, would be an ethical dilemma for them. I completely understand that.
I’m surprisingly ok with the outcome from today.
I’m actually relieved. I just don’t feel surgery is the path for me, for now. Something doesn’t feel right about it in general. I’ve never been nervous about any of my many surgeries in the past, so this sense I have of needing to wait, is one deserving of attention. I’ve had 2 spinal surgeries in the past 18 months and both have made my situation worse. It’s not unusual for this to happen with severe degenerative diseases. I am happy, for now, to cut my losses.
We can’t always have happy endings in life, but it doesn’t mean we can’t be happy.
I’m choosing to be happy. I’ve done all I can do. I’ve researched, discussed, asked questions, followed up. I can rest easy knowing I’ve left no stone unturned.
I have my answer, I know my lot and I’m content with it.
There May Be One Glimmer Of Hope
I did ask the Specialist if the spine could naturally do something in the future which might reduce the pain.
He explained an unstable spine can eventually fuse itself. In my case l4/l5 could fuse together of it’s own accord. If that happened, it creates a stable spine and the pain would cease.
He said my spine is so unstable at this level, it’s almost collapsed onto itself in a way fusion could begin.
A glimmer of hope is always a lovely thing to have!
I’ll be holding on to it and praying for a fusion miracle. It may take a few years but anything worth having is worth waiting for…..don’t you think?
If you’re looking for genuine support, care, understanding & friendship, you are so welcome to join my closed Facebook support forum, Medical Musings with Friends . It’s a safe place to connect with others living with chronic & complex diseases, who truly understand the daily challenges. A warm welcome awaits.
I’m also a Contributor at “The Mighty”. You can check out my published articles at My Author Page
I also write @ Blogs by Christian Women
If you would like to read a little more about my journey, here’s the link to My Story