My Spinal Specialist appointment went well. I think that’s the best description under the circumstances.
I managed to walk to his office using my walker and I thought I was doing well. As I entered his room I smiled as brightly as possible.
However the pain in my eyes and my inability to move faster than a snail, revealed a very different picture to my Dr than the positive one I was working on presenting. He knew just looking at me I was doing far from well.
He grimaced and said;
“So it’s clear the facet joint injections didn’t work”
I looked up as I struggled to sit in the chair in the office and replied;
” Unfortunately not, although the anaesthetic worked a little for 24 hours”
I knew I was grasping at straws at this point and so did my Surgeon.
Nothing Like Getting Straight To The Point
I thought we would sit down and have a chat about numerous options. Well, a few options….it was clear we were getting to the end of possible treatments. In hospital we had discussed radio frequency neurotomy as the next step, so I was at least expecting to revisit this idea.
Apparently not!
My Dr turned his laptop around to show me my MRI. I had seen it before but he had been studying it. He pointed out the spinal stenosis was severe and was obviously not going to respond to conservative treatment. We had tried.
“You really only have one option available to keep you out of a wheelchair. You need decompression surgery.”
Those words lingered in the air for a moment. I wasn’t expecting him to be so definite. We both knew that surgery of any kind would be risky for me. I’ve had so many and my bones just have a mind of their own. We never know what to expect when I’m opened up.
I raised this fact. He acknowledged he was concerned about what he would find. Would my bones remain stable? Would they be so hard he’ll need specialised equipment? We just don’t know.
So why are we even contemplating going ahead?
We Have No Choice
We simply don’t have a choice. The pain from the stenosis is horrendous. The Spinal cord compression is dangerously close to requiring emergency surgery. Best to avoid that scenario. I also have a lesion at L4. It may be a bone spur or a cyst but it’s not going away and will only get worse.
I can’t even begin to think what “worse” would be like.
So, I’m having surgery. Open lumbar laminectomy and decompression spinal surgery at L4/L5, on the 9th November.
It will take 3 months to recover with the first 6 weeks being very difficult. I won’t be able to sit or stand for longer than 15 to 20 mins at a time. No twisting or bending. No housework. No lifting. No stretching up. I will only be able to sleep on my back.
My situation and recovery will be complicated by my bone disease and especially my non-union broken left femur and foot fractures.
All we can really hope for is eventual relief from the intensity of my back pain so I can better manage my leg and overarching bone pain.
Trust in the Lord with all your heart, and do not lean on your own understanding.
Proverbs 3 v 5
Taking The Risk
Sometimes in life you just have to take a risk. You have to gather all the information you have available and weigh up the cost and the benefit.
I don’t like the thought of the tough recovery period but I’ve been through major surgery before and I can do it again.
I know there is a chance the surgery won’t work but at this point I have nothing to lose.
I know my Surgeon is not entering into this lightly and he has his own concerns. That gives me confidence that I am in good hands. He cares and he will be doing every thing he can to mitigate the risks.
Does that mean I won’t get cold feet? Believe me I will definitely be thinking of reasons to run the other way.
Thankfully I do tend to face things head on so I’ll be proceeding. When I do get moments of feeling like cancelling, my body has a great way of reminding me that I have a problem.
Accepting The Inevitable
I had a goal of getting to a local shop for 10 mins this afternoon. A goal that failed miserably!
My back rendered me unable to move at all from 7pm last night. Same situation that landed me in hospital 2 weeks ago. I avoided the ambulance trip this time as I know complete rest is the answer until surgery and I want to be at home in the lead up to surgery.
It was a timely wakeup call reminding me, even if I get an hours relief from pain it just isn’t lasting.
I’d love nothing more than my back to miraculously heal. I’d love nothing more than to not need more surgery.
Sometimes we just have to accept that we can’t have or do what we might like. When our plans have to change, or our hopes are not realised, it’s not the end of the world. It’s a setback.
Finding a way to deal with chronic illness setbacks is the key to remaining positive. It’s the key to survival.
So, my advice…..no matter what difficulty you’re facing, acknowledge it, cry about it, talk about it, research all options available and then set it all aside and do something you’ll enjoy.
My husband helped me get up and dressed and seated downstairs today and we enjoyed a favourite Father Brown episode. I also enjoyed some online shopping……a couple of dresses that will be easy to slip on post surgery.
So life isn’t all that bad, despite pain and disability. There are always options to salvage setbacks and disappointments
One of the biggest positives of my recent setback is quite simple. It’s brought a change of attitude and I can honestly say…..Surgery can’t come soon enough!
Sam xx
I can do all things through him who strengthens me.
Philippians 4 v 13
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My Medical Musings 
Hi Sam, I hope you get great relief from this surgery. I had it. Decompression and fusion. How many discs will they fuse? I know I could hardly sit and frequently lost balance with walking so also could not wait. The back injections did nothing (except the anesthesia for a day or two). Most nights I did not sleep due to pain prior to the surgery. It took me longer than normal to recover due to RA flaring…about a year. But, I am glad I had the surgery. It certainly relieved the pain. Hugs to you. Best intentions and well wishes to get you through this ordeal. Sincerely, Marla
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That’s really helpful to know Marla. At this stage it’s just decompression at L4/L5 without fusion but he’s not quite sure what he’ll find once I’m opened up.
Was yours due to Spinal Stenosis or Disc Herniations? xx
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I had stenosis and herniation, they made a new disc of some sort, and did fusion at 4-5 also. I was in the hospital for 5 nights which I think is longer than normal. I still have pain and still use Lidocaine patches but it’s much better. My sciatica is better. I am more stable walking and sitting. I have a lot of degeneration so pain is not going away completely. I use a brace when traveling in the car for extra support.
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We are the same Marla. I can’t however wear a brace because of my stoma. We are avoiding fusion if possible as working with my diseased bones is just dangerous territory. If he finds a fracture or if there is instability, he’ll intervene. xx
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I see. I’m hoping for a speedy recovery for you and relief of back pain!!
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Thanks Marla. Thinking of you xx 💖
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Oh Sam, I’m so sorry you’re put in this position. I was in the whole “no choice” position when I had my 3rd op (for a stoma) and you’re right about needing to cry it out, do whatever you have to, then come to accept it and move forward with hope and positivity for the best case scenario. I really, really do hope decompression can help. As much as there are chances the surgery may not help, there are chances it will, and my fingers will be so crossed they may get stuck! Is there any idea of the waiting list? I like that you’ve already begun online shopping, I was onto that before every surgery too! Good excuse for a little distraction 😉
Sending lots of love and hugs your way,
Caz xxxx
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Thanks so much Caz. I’m really blessed that I have Private health cover and that means no waiting list. I could have had it done this week but not at my favourite hospital so I’ve opted for the following week, 9th November. It gives me a chance to be as organised as possible that way given I’ll be out of action for a while.
I’ll be celebrating my 5th stomaversary on the 11th Nov while in hospital. Seems kind of fitting 😊 lots of love xx
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Stoma will be 5? Wow, I’ll have to remember to wish you a happy Stomaversary for then! Does it feel like 5 years for you? Mine is 2 1/2 now I think, but it doesn’t feel like that long, it’s odd.
I’m glad you’ve not got to wait long so you’ve got just enough time to prepare without too long to stress tooooo much. xxxx
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I can’t believe it’s 5 years. It’s gone so fast 💖
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Hi Sam, I have been meaning to email you for weeks and weeks, but health issues keep coming, I know you know how it is! I’m the lady who has extremely high bone density, like you. As in 7 standard deviations more dense than the average 30 year old. My team are supremely disinterested, I think because I haven’t had any fractures, or seem to have any symptoms. I also have a severely degenerated spine, I’m wondering if the spinal degeneration is related to the osteopetrosis-type disease that you have? I have definate neural compromise, left calf is paralysed because the nerve is compressed, I know I will need surgery at some point, but I am pushing it back as far as possible. the pain is horrendous most days, but I can’t face surgery. I also have RA and crohns, we just seem to have a lot in common… I’m trying to put my own pieces together, witlh doctors who find me an annoying anomoly and certainly make me feel like the wish I would jsut go away. I’m reading through your blog, thank you so much for the previous help you have given me, I’ve shown my endo, Im having to fight for everything though. I wish you the very best for your upcoming surgery, I hope you get some relief.
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Hi Lily, lovely to hear from you although I am sorry to hear the battle you are having.
I hazard a guess that you are right that your medical team are just hoping you don’t have at fractures. Even when and if you do there’s little they can do with this disease, apart from patch you up.
Yes, my Surgeon believes my spinal stenosis and it’s severity is caused by my bone disease. It would most likely be the same in your case.
Surgery is scary but I’m a little used to it having had so many. I would prefer not to need this one but knowing I don’t have any other option does make it easier to proceed.
Keep in touch as you’re able and let me know if there is anything I can do to help you.
Love, Sam xx
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Thanks Sam. I just saw my endo and she was much more interested today. She ordered some tests for bone turnover, but they didn’t do them for some reason. Do you know what those tests would be? I’m looking through your blog, searching for the diagnostic tests they did with you. I guess your femur break made them sit up and take notice. It must be so painful. She is thinking some variant of osteopetrosis too, but she said my pelvis xray was normal. But I know i had a previous x-ray that said there was bone sclerosis. I’m trying to find that one. Not that i want to have that diagnosis, but I just want to know if my bones are brittle and fractures are a risk, or if my BMD really means nothing at all. Is there a blog post you can point me too off the top of your head that runs through how they diagnosed you? I have a lot of osteoarthritis damage through my entire spine, much more than I should have at my age, so I guess I’m looking for an explanation for that. Thanks so much for all your help. All the very best to you x
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That’s good news.
Yes the bone turnover blood tests are important. They show whether you have low bone turnover. If you have high bone density and low bone turnover you have a much higher risk of fractures. The test is P1NP and CTX.
This link is one of my bone disease posts. If you search bone disease in the search engine on the blog you’ll get a whole selection to choose from.
https://mymedmusings.com/2017/08/21/bigger-isnt-always-better/
Keep me posted. I’m so interested in your story. Your bone density is even higher than mine so I’m thinking your bone turnover must be reasonable otherwise you would be having fractures.
All my bones are sclerotic so if you can find that report for your Endo that will be useful.
Take care xx
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Thanks so much Sam! I’ll read that post and search for more. Really appreciate your help xx
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My absolute pleasure. I’m so sorry you are going through this xx
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Prayers for your surgery to go as smoothly and painlessly as possible. I know about back pain, severe scoliosis and probably numerous surgeries just just weren’t to my liking. I always felt God would heal it, and He has done just that, not 100% but a big difference. It’s coming, He can use many ways. I was taught to resist the devil, pain being from him, but I learned that he is a liar and copies God, some of my pain was actually from healing, there is nothing too hard for Him to take us through and work with us on. Even the mental anguish of it. Please rest and take care, all the best.
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