An Honest Chat With My Specialist….It Just Can’t Be Fixed!

A week ago I had yet another spinal MRI, my second in three months.

Something new happened on the left side of my lumbar spine a few weeks ago, which caused a massive increase in my disability.

I can no longer stand for more than 5 or 10 mins at a time, even using aides, and I can’t walk with aides further than 50 metres on a good day.

The pain is unrelenting and unresponsive to my, already heavy loaded, pain management regime.

My spine is unstable at l4/l5, l5/S1 and L3/l4 isn’t far behind it. It’s not just one issue. The issues are multifaceted, all underlined by my rare bone disease running rampant and damaging pretty much anything muscoskeletal throughout my body.

Just as a little reminder, in addition to the spinal damage, I have 2 broken femurs (one non union), 7 foot fractures (all non union) and the disease is affecting joints throughout my body left right and centre. Each day is an unknown adventure.

My Specialist called me, about a week after this latest spinal event, and decided a repeat MRI and Xray was necessary, plus he wanted to see me in person. It was time for a good chat and review.

The Cold Hard Facts

When looking at scans you can see the damage the bone disease is causing. In terms of my spine this includes:

  • Spinal Stenosis at varying levels and varying kinds:
    • Foraminal Stenosis
    • Central Canal Stenosis
    • Lateral Recess Stenosis
  • Compressed nerves- in my case a cluster of nerves are compressed at l4/l5
  • Disc Bulges
  • Ligamentum Flavum collapsed into my spinal cord
  • Sciatica in both legs caused by the above
Ligamentum flavum hypertrophy. This condition involves the ligamentum flava, or aptly named yellow ligament, which is one of the soft tissues inside the spine

The only treatment available to me is fusion surgery with a bone graft….except it’s not available to me.

What scans don’t show are the integrity of my bones. The disease has made them dense but they are soft and simply can’t handle bone grafts. A bone graft requires union with a healthy bone to be successful.

We tried a bone graft with my non union femur but it dissolved out of sight within a month. My Surgeon at the time had never seen anything like it.

My Specialist today looked at my scans and just grimaced as he said;

” what are we going to do with this mess?”

The Honest Answer

Nothing….we are going to do nothing.

We again chatted about the risks of surgery. My Specialist wouldn’t even choose it for himself if he was in my shoes. I asked him this question as I think it’s always a good idea to get your Dr to think about how they would approach the situation on a personal level. He had valid reasons for his answer of “no way“.

The risks from the full fusion surgery will likely cause:

  • Non union bone graft, causing immense localised pain
  • Infection which would likely be antibiotic resistant, possible months of hospitalisation or worse …death.
  • Failed surgery will not eradicate existing pain and disability, and the above risk factors, if I survived them, could easily remove the current level of quality of life I’ve made for myself.

So What’s The Plan?

I asked my Specialist; “are we taking the ‘it is what it is’ approach.”

He very honestly answered, “yes”

He is 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 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 sorry to tell you, it’s just not going to happen. What will happen is I will embrace the gift of life I have, and make the most of every wonderful moment to relish the simple things.

If I have surgery I would likely end up permanently in a wheelchair and still be in excruciating pain. At the moment my outcome is likely a wheelchair with reduced pain while in it.

My Specialist and I agree, being in a wheelchair, due to the pain of failed surgery, would lower my quality of life even more than it’s currently lowered.

So surgery is definitely not on the plan!

The Rehab Option

Rehab is not an option.

My condition won’t 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 generally won’t touch this type of disease process. It’s highly degenerative and progressive and responds badly to physical interventions.

The Pain Management Option

Quite simply, been there, done that. My Specialist is happy I’m doing all I can with pain management. This includes my medication regime, my positive approach to life, acceptance of my disease and my pain management therapy techniques. All are on the right path.

Keep Moving

We discussed how I like to push through the pain and walk a little with aides, do chores around the home etc within limits. My Specialist confirmed I am doing the right thing trying to keep mobile as much as possible, and resting as needed when pain is beyond extreme. My pacing approach is an endorsed part of the plan.

Monitor, Accept, Focus on What I Can Do

My Specialist will continue to monitor me. He’ll be led by me though. If a new and worrying symptom occurs, he wants me to do one of the following:

  • Call an ambulance and go to ER immediately, or ;
  • If I’m comfortable to ride out the new incident to see what happens, call or email him and he’ll organise a new MRI/scan to review the new damage.

It Is What It Is

I accept it is what it is. I know, 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 some 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 even a short picnic.

Our Doctors are trained to “do no harm”. To conduct surgery on me, would be an ethical dilemma for them. I completely understand.

I’m 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 a severe degenerative disease. 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.

I know many of my readers are in pain and just want to be pain free, no matter what. I completely understand and I pray a safe, pain free, solution awaits you.

I also know many of my readers have diseases, like me, with no cure and no treatment.

To chase an impossible dream of a pain free life, can make our situation worse. It can lead us down a rabbit warren of despair and disappointment, as the pain remains, despite every attempt to find a solution.

To accept our circumstances brings a sense of peace and allows us to plan a life around our disease. A limited life perhaps but it doesn’t have to be unhappy or unfulfilled.

I’ve written many blog posts about living a life of purpose and fulfilled moments, with chronic disease.

It is possible.

It is what it is”

Take care

Sam xx

If you’re looking for genuine support, care, understanding and 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 and complex diseases, who truly understand the daily challenges. A warm welcome awaits.

I’m a Contributor at “The Mighty”. You can check out my published articles at My Author Page

I also write @ Blogs by Christian Women

I’m a member of  the Chronic Illness Bloggers Network  the  Grace Girls Facebook Group and the Salt and Light Linkup Group

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Best In Show Nominee 2021 in the Categories: Blog; Community;
Patient Leader Hero; Facebook; Instagram; Podcast https://www.wegohealth.com/profile/awards
Australian Aspire Awards 2020 Nominee – Awarded Medal of Recognition for Individual Best Achievement Community Advocacy.
Thank you to Arthritis Queensland for the nomination!

4 thoughts on “An Honest Chat With My Specialist….It Just Can’t Be Fixed!

  1. Sam, I’m sorry that there is no solution but it does sound like doing nothing is the right thing. You are dealing with so much but you still find the ability to enjoy life and help other people to the best of your ability.
    Take care, Sam and I hope you can find many moments of joy each day.
    Liz x

    Like

  2. Oh Sam, I’m not quite sure what to say. I’m so sorry it’s come to this point, and that the softness of the bones means a bone graft isn’t doable and any surgery could come with far more risks than the chance of benefit. I just hate that there are no other routes to investigate, at least at the present time. Sometimes we have to face the fact that there aren’t options. There’s no fork in the road, it’s just a case of carrying on and making the best of what we can. With that can come some relief in a strange way. Not becoming complacent, but giving up the exhausting chase and instead working at being content and comfortable.

    You have approached all of this with such grace and gratitude. Where you have been limited in some ways because of your health, you have grown in others and taken new paths, such as with your blog, writing, podcasts, FB groups. You are unstoppable. Sending lots of love and hugs your way my friend xxxxxx

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  3. As my mom used to say, while blind, on dialysis, and unable to walk, that she was living forward. Forward? Yes, I am forward to the day her grandchildren never had to do this. Indeed she has. You are living forward in so many of us.

    rick

    Like

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