Spinal Shenanigans….It’s A Little Complicated

It’s official!

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 Ok

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?

Take care

Sam xx

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.

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9 thoughts on “Spinal Shenanigans….It’s A Little Complicated

  1. I;m glad you’re doing OK. You have a brilliant team around you. I opted for the spinal fusion and it worked for me, in that it has reduced my pain levels and uncompressed the nerve that was always on, always firing, always causing pain. I suspect you are one of the few people on the planet who knows what that feels like. I still have severe pain, but pain is exponential. it was excruciating every second before, now its ‘just’ severe. Any improvement is improvement, and better is better. But it is not ALL better. I am so grateful for the pain relief from my fusion. I will be having a CT next month to see if my bones are fusing, healing, if the fusion has been a success. Having had L3 to S1 fused is no small deal. Doing it with a rare bone disease where the outcomes are utterly uncertain is pure faith. I think of you often, because our bone density is so rare that there are very few people who could understand. I have not had to deal with the fractures to the extent that you have. And I hope that there are more options for you. I did the fusion because I was already in the wheelchair, I was partially paralysed, I had lost bladder control and sometimes bowel. For me there was nothing more to lose, as you said. I don’t want you to get to that place but I’m glad you have a team who understand and will whisk you into surgery when you have nothing more to lose and the time is right. Thank you for sharing your story. take care x

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    1. Thank you so much for sharing your story with me. I’m really pleased your pain has been slightly reduced. I completely understand how even the smallest reduction in pain can make such a difference to our quality of life and well-being.
      Thank you for your encouragement too.

      I hope your CT scan brings you positive news of healing. I’ll be praying it will. Take care xx

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  2. Sam, thank you for letting us know you are OK.

    I have to say however, that I am enjoying the pictures of my spine full of hardware. This year I intend to blow it up and put a color wheel on it so we can just put it up as the Christmas tree. It will be my contribution to the family traditions for years to come.

    rick 🙂

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  3. I’m so glad the new specialist was a lovely guy, that makes a difference, and even better when you’ve got confidence in what’s been said.

    I’m not in your complex shoes but from what you’ve said, and from what I know of with your experiences, it sounds like a decision I would have gone for too with saying no to the surgery. When the risks are so high, you can’t say ‘things can’t get any worse’ with how you are now because they can. I’m just so sorry there aren’t any other proactive options at present other than to keep doing what you’re doing. Your attitude never fails to humble me, Sam. I can only imagine how difficult it is to deal with this day in, day out, but I think you do an incredibly kick-ass job of appreciating the small things, working on pacing and pain self-management and all that good but frustrating stuff. Now that surgery is off the table for the present, you can breathe a sigh of relief to not have to umm and ahh over it. Always hold on to that glimmer of hope. Carry it with you as you go about your day to day at home.

    Sending lots of love & gentle hugs xxxxx

    PS. I still reckon there’s a chance, what with all this AI technology, that an Iron Man suit is just around the corner for you 😉 xx

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    1. Thanks Caz, your encouragement means so much. I think you are absolutely amazing with all you deal with too and your generosity of spirit, to always reach out to others as an encourager, is so inspiring. Lots of love xx💕💕

      PS: love the iron man suit idea 😄

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  4. I am so inspired by the approach you’ve taken and by your outlook. It is so hard when there are no great options, and the options that exist may have as many cons as pros. But as you’ve pointed out, you have hope – and that is incredibly important. I love that you are choosing to be happy – because it is a choice.

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