It’s been a strange old week to put it mildly! The weeks seem to whizz by with very little happening in them. Some days I have to check my phone in the morning just to remember what day or even month we are in. How on earth is it June already when it feels like the lock-down only started a few weeks ago ( March 23rd!).
Last Thursday I ended up in agony with my back, it has been playing up on and off since around the 10th May. I have what is known as a Spondylolisthesis, which is where my L5 vertebrae is slipping over my S1. I was offered a spinal fusion in 2014 and I declined on the basis most days it was fine and I could manage the occasional flare ups. I started physiotherapy to strengthen my core to help support my spine and all was going really well. I had the odd twinge that usually subsided with the use of anti inflammatory medication and some ultrasound treatments. I carried on like this quite happily until around the 10th May.
I had been doing some sewing and as I packed up for the day, I went to get up from the table and there was no power in either of my legs. Basically nothing happened. Any normal person would have probably freaked out but this kind of thing has been happening to me for years so I just sat there for a bit figuring out my next move. I tried again and I could get up out of the seat but my back was now in spasm, with pain shooting down both my legs and I couldn’t stand up straight. I was in such a bad way that I actually rang the doctors there and then. Most times I will manage my own condition for as long as possible before getting help. I knew that this wasn’t going to get any better without intervention. The doctor prescribed me diazepam and to avoid being seated for long without moving. I stayed off my sewing machine for a few days and did as I was told. Whilst on the diazepam it was pretty impossible to do anything anyway as I couldn’t think straight.
My back slowly improved but I was getting stuck if I bent forward at all, even a tiny bit. I couldn’t carry anything heavier than a full mug of tea, even if it was in a bag over my shoulder as that also caused me pain. I was struggling to get out of bed, once flat on my back I was like an upturned tortoise struggling to right myself and I was really struggling to get out of chairs. No position was comfortable, anything pressing on my spine like a waist band even lightly was causing me pain. Then all of a sudden it really eased up so I started to do some very light Pilates exercises, very carefully. Within 4 days my back was as bad if not worse than it had been in March. I soldiered on through Thursday but by the next day the pain was wearing me down and I had to ring the doctors surgery.
This is where the fun really began! Due to Covid-19 they had now implemented a system where you could no longer request to speak to a gp, you had to fill in a form for an E-Consult. The problem was every time I told the truth in these boxes about how bad the pain was it kept telling me I needed to ring 111 and ask for advice. This was ridiculous as all I needed was some Naproxen and some diazepam. I know that the algorithm was picking up on Cauda Equina Syndrome as a possibility due to the level of pain I was in. However having had a bad back since the age of 16 I know what the red flags are of this syndrome and I didn’t have any. If I did I wouldn’t be ringing 111 but 999 as I have always been instructed to do so by the numerous doctors I had seen over the years. I know the system can’t be perfect, the issue is when you are dealing with a “professional” patient who has managed their conditions for years it becomes tedious dealing with machines that just don’t get that and look for red flags.
I had to keep going back a page and adjusting my answers to stop it repeatedly telling me to contact 111. Now please don’t do this yourselves, I am not advocating anyone lies on their e-consult form. Tell the truth and follow the advice of the professionals not a blogger. I must have written close to 2000 words as each box had the ability to take 500 characters and I managed that on most! When I eventually managed to get it to agree to allow a gp to contact me I was left with the message that a doctor may not contact me until 18.30 on the following Monday. I was filling the form in on Friday 2pm……..WTAF?
Clearly the doctors that had access to my form realised that I needed help before then and to be fair I was contacted less than an hour later. I was in tears at the prospect of not being “seen” until Monday and had I had no contact from a gp by close of trade I would have ended up ringing 111. The doctor I spoke to was lovely, he had clearly read all the information that I had given him, that I had tried everything I could at home and it wasn’t working. He also gave me a quick question about Cauda Equina – they always ask that you haven’t lost control of your bladder or bowels or haven’t gone numb in the genital / anal area. I said if I had I would have called 999 and not called you, he laughed and said I can see from your notes you have been dealing with serious spine issues for 30 years ( and that made me feel fucking ancient cheers!) and you have a sensible head on your shoulders. I told him the only medication that touched it since this kicked off in May had been aspirin and the diazepam to get the muscles out of spasm. I asked for Naproxen and a few diazepam to use when it got bad. He was happy to write a prescription for both.
It took 4 doses of naproxen ( 2 full days) to get the pain under control and now it is better than it has been in ages. Hubby has been giving me some ultrasound treatments. I have been very careful not to lift anything heavier than a cup and to ensure that I don’t remain static for too long. I am hoping that things stay this way. By the end of each day I end up with a little pain that gets a bit uncomfortable but nothing like what it was last Friday when I didn’t know what to do with myself. When I sit on the sofa I sit on my special cushion. I think I am just going to have to be very careful for a while until this settles down. The doctor I spoke to last week felt that my spondylolisthesis had probably shifted forward and I would concur. For months I have had the feeling that my sway back was getting more severe. The middle of my spine feels like it is being pulled forward and my pelvis has just felt out of alignment. That day back in May it probably just moved a little further again and has been pressing on the nerve roots.
My mum asked if I could feel a step in my spine but at the time my spine was so sore I couldn’t have anyone touching it without gasping in pain. When Mr Myasthenia kid was doing my ultrasound treatments I was constantly having to ask him not to put any weight onto the probe as my back was just so sore I couldn’t cope with the added pressure. I actually can’t remember a time when my spine has been that bad. My goodness I was terrified that I was going to end up having emergency surgery! I am so pleased that it has improved so significantly.
I’ve always said I had a bad back but that really didn’t describe what it was like at all. Every movement, even wiping my own bum was causing me to cry out . I have since done a lot of reading about Spondylolisthesis and so much makes sense now. Why my buttock muscles always feel tight and sore, the pain on my iliac crests where it feels like the ligaments and tendons are tearing. It is all being caused by the movement of the vertebrae in my spine. It probably also accounts for my bouts of Piriformis Syndrome which in the last 6 months I have had some awful flare ups of.
So for the time being I have avoided hospital and a spinal fusion but for how long who knows?
6 thoughts on “Spondylolisthesis”
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Hello! I too have CES and can totally relate to the loss of feeling in your legs. For ten years befote my surgery I kept telling my doctors my legs feel like they are not my own. I still feel this way and it has gotten worse since I had surgery on L4_L5 a year ago. I felt every word of your post even down to the bathroom issues. I call the bathroom my office as I spend most of my time there.
Take care and be well 🙂
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Thank you so much for taking the time to read my blog and leave a comment, that was very kind of you.
I am so sorry to hear that you too suffer like this . Mine has settled for the moment but I know that is always a temporary thing and some days out of nowhere it can be agony again.
Stay safe in these uncertain times
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You are so welcome!
Thank you for responding! Much appreciated! I usually do a search for other CES related blogs as it is always nice to be able to connect with others that are experiencing some of the same things as ourselves. Not many people, including physicians, know about CES.
Glad that yours has settled and hoping it stays that way for you. I have more good days than bad at least that I want to remember 🙂
Have a beautiful day!
I will have a wander over to your blog and have a look.
I spoke too soon it has flared up this afternoon probably because I lifted something I shouldn’t I am hopeful if I am careful for the next few days it will be ok. It is very frustrating as you know!
Do you have a Connective tissue disorder as well? I have EDS which is why they think mine has happened. It happened to my mum and she ended up having very extensive surgery to stabilise her spine. When they did the operation they also found that at some point in the past she had broken her spine.
Mine tends to flare up and then settle in a cycle. So I am keeping everything crossed that it does the same this time. I hope you are ok.
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Oh sorry to hear that! I know sometimes if I cough or bend over to pick something without thinking about it, I have irritated my nerves and the pain is quite jolting! I hope your discomfort goes away quickly. I am only treating my pain with ice, ibuprofen and rest. Medications that they have prescribed had made the pain worse because of how it affected my bowels…sorry TMI.
I have not been diagnosed with anything other than the CES and compressed discs however, I just had a nerve conduction test and a few MRIs of my thoracic spine as they think I have a pinch nerve. Wow, your poor Mum! I had broken my tail bone 20 years ago and had thought that it was the cause of all the pain. My surgeon wants to do a fusion and I have said, no way!
My pain and swelling (in right leg only) comes in cycles as well. Currently, where I live, the temps and humidity seem to be affecting me. The more humidity, the more pain and swelling.
Hope you feel better soon and thank you again for replying 🙂 Have a great day!!
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