It has been awhile and so long since I have written anything very much that I am finding it hard to put pen to paper so to speak and my camera is feeling quite forgotten lingering on the office desk as I haven’t taken a photo for weeks….quite unlike me.
But firstly….how is everyone – very well I hope and enjoying the summer and getting life back to some kind of ‘after Covid’ normal. Though I know of more people with Covid at the moment than ever before. From time to time I manage to have a little catch up with the blogs I follow and find everyone seems busy in their gardens, or decluttering and I know some of you have even left jobs and moved house.
I am still hoping that normal or some kind of new normal will happen for me soon now I have my results, at long last. You may be curious to know what has kept me away so long (I know I would be); it really is no secret…..at the time whilst I was waiting for scans and results no-one had any idea of what might be wrong and it could have been anything from the return of the cancer or just something quite trivial – though my symptoms were not suggesting the latter. I came back from Scotland at the end of March and sitting in the car for such a long journey was the start of my symptoms as a day or two later I could not bear with pain all down my back and my feet and legs became quite painful and numb too, to the point when I could no longer function and just had to lie down.
Well, the results from the MRI scan have shown a right lateral extruded disc at L4 and L5 level but they also found something called a Tarlov cyst on the left at S1 level growing on one of the spinal nerves in the spinal canal. These cysts are quite rare, often don’t produce symptoms until they grow in size…. which is what has happened to me – it had been aggravated and enlarged quite rapidly. So presently I have a lot of nerve problems going on as both the herniated disc and the cyst are pressing on the nerves that run from my lower back down my legs to my feet making them both painful and quite numb in places. As the disc heals the feeling should come back to my right side but the cyst is not something that is easily dealt with as it consists of cebral fluid that fills the nerve root and expands to then compress on surrounding nerves. Removal of them as you can imagine is only done as a last resort and can cause irreversible paralysis, draining them is a more usual procedure but one that doesn’t have a good outcome as they just fill back up again over time. The cyst is aggravated by continuous sitting or standing – walking is not quite so bad and it is a condition that is managed rather than cured. When the discomfort gets quite bad lying down is my only release.
It is the reason that I cannot sit for very long these days to write a post, edit photos or read and comment on your blogs. At its’ worst sitting to eat a meal was too much but gradually this is getting a little better. I have spent so much time lying flat reading and watching mindless TV when of course what I would really like to do is cook and garden and even go for a day out somewhere. Travelling in the car is almost a complete no go area and the most I have managed so far is a trip down to town. We are not even able to go up to Scotland and I wonder what the future holds for us now with our retirement cottage. I am not sure at this point if gardening will ever be something I can do again and DH is finding it a struggle to keep up with everything himself both in the garden and the house, though I must say he irons beautifully (something I never knew!!).
I am now having physical therapy on my back for the disc problem and with a mixture of gentle exercise, plenty of short walks on the flat and rest periods during the day it gradually seems to be healing itself. I am hoping too that the cyst might settle down if I am not aggravating it anymore with constant gardening and travelling.
So that is my story so far and a big thank you to everyone for your lovely messages they have really helped to keep my spirits up and hopefully as things begin to settle down I will be able to post a little more often.
Until then have a lovely summer. xx
where the journey takes me 2 
It’s lovely to hear from you again but not so lovely that you have had so much pain and difficulty. There’s not an awful lot I can say that would help as I have no experience, but I am very glad that the disk seems to be sorting out over time and I hope very much the cyst becomes much more manageable over the next days, weeks and months.
With much love to you and thanks that you’ve been able to blog again. xxx
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I was happy to see a post from you and am sorry the diagnosis is not the best. But , having had a compression fracture in T 10, I know it will heal. Mine took over a year to get to where I could walk etc. The cyst sounds awful and painful. Would tryng to drain it help temporarirly or is it too dangerous? I also was wondering about radiation? Can it be radiated ( like a tumor) and help it disolve? Just questions that probably you’ve already asked. But I’ve been checking daily if you had posted so I was so happy to see this today. All good thoughts your way. Do take care and hopefully each day get a bit better.
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Good to hear from you, Viv, though not the best news. I do hope you get further relief as times goes on. I can certainly sympathize with you on nerve pain at the moment as I am dealing with it myself — five weeks post-op from right knee ACL reconstruction surgery where the saphenous nerve was either stretched or nicked (hoping stretched since that means there is some hope the pain will resolve over time). Unremitting nerve pain is no fun–so I do understand how difficult these past months have been for you. The PT rehab on the knee (regaining range of motion, etc.) is going well enough, but the nerve issue means sleep is limited to a couple of hours a night (which, of course, doesn’t help the healing process). The touch of a sheet is like fire on my knee/lower leg, so I definitely feel for you…in more ways than one. How quickly our worlds shrink with injury and illness. Here’s hoping you have better, pain-free (or at least greatly reduced) days ahead. Thinking of you. Take care, Viv. x
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It’s so true how our world shrinks with an illness. I remember my first year in chemo and sitting in the car while my husband shopped and feeling, the world//life just goes on even when mine is so small!
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Identifying a problem is a relief in and of itself. And just as it takes time for a problem to grow an expand, it often takes time to solve and “dis-solve.” Patience is required. A wiser person still tells us to be thankful in EVERYTHING. It takes patience and practice. 🙂 I am thankful for the pain that’s a clear sign that something is wrong. Think about it. 🙂 Have you ever been told “It’s a good thing you did X, Y, and Z because otherwise . . . ”
Be well.
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Gradually healing itself is encouraging! I wish you continued good progress. This year I have watched my sister recover from COVID – she can now walk with me in Kirstenbosch (at my pace and not needing to rest often) And my husband back to mountain hikes after knee surgery.
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What a tale you had to tell and I do so hope for a happy ending! I will be very sad if there are no more visits to your holiday home. I loved all your beautiful photos and art of that magical place.
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It’s so nice to see an update from you. I’m sorry to hear that you have been unwell. I hope that with rest and physical therapy you are able to make a recovery without surgery. Thinking of you. Take care.
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Viv, I’ve been hoping for an update post from you and checking regularly but so very sad to read what you are going through. You are between the devil & the deep blue with the cyst – if drained it will eventually fill again but removing the entire sac is a very difficult surgery. I hope your medical team can offer you some ease and a way forward.
Earlier this year I had a problem with back muscles, nothing like what you are going through, and I cold not sit, only stand or lay flat. In desperation we bought a rising desk so I could stand at the computer and it has been absolutely brilliant.
Very solid & stable and easy to use, looks much nicer than my old one too!
https://flexispot.co.uk/category/desk
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It’s so lovely to see a post from you again. I was wondering why you hadn’t posted in a while. I am so sorry to hear of your health difficulties. It must be so debilitatiing and demoralising for you. I hope that the physical therapy helps you to get back to some sort of normality or at least helps you to manage your condition. Please know that our thoughts and prayers and good wishes are always with you.
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It’s lovely to see a post from you, Vivien, although I’m sorry to read you’ve been so unwell. I hope the physical therapy will help to ease your pain and that you can find a way forward with your treatment. X
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So sorry to hear about your back problems – what an understatement to call them back problems. I’m praying for you, and I hope that things resolve soon. Hopefully at least the disc can be sorted. Hugs x
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Sorry to hear you are not well, and so restricted by your condition. So frustrating. Sending love, prayers and a hug x
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I am so sorry to hear all the things you have been through Vivien. I really hope that you are able to get some relief from the pain. x
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Oh my, my mind ran to a recurrence of an old problem but not to a new one. I am happy that your DH is doing some new things and I hope you will accept all
offers of visits and help! Everyone’s pain management path is different and I hope you will soon find what works best. Thinking of you!
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Lovely to hear from you, I am so sorry to hear that you have been so unwell, it sounds like it has been a very hard time for you. I do hope that you are able to get some respite and that you continue to recover in ways that make life more manageable for you. Thinking of you at this really difficult time.
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Backs are brilliant things, and things that we really don’t think about that often until they go wrong, as we have both found out. I have never heard of a Tarlov cyst but it sounds like it can cause a lot of pain as it grows.
I hope your pain levels get better soon, it’s very hard having a condition that is managed rather than cured isn’t it and no two cases are ever alike. I never thought I would be in so pain just sitting at my desk blogging and having to do things in short bursts until the pain is too much to bear.
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