Tuesday, 9 August 2016

Spoonie Update | The Bad News I Didn't Want To Hear

I've spent the past few days going back and forth about whether I should write this blog post, I've always been so open and honest about my journey with my health but sometimes you question whether you are annoying people or others think you are attention seeking. It's something that is always at the back of my mind when I write my spoonie updates, despite this being my blog and therefore I should be able to write about whatever I want. When people get bad news everyone deals with it in their own way and personally I find that writing these posts and talking about it honestly helps me a lot. So, this post is going to be quite negative and there isn't really a positive side to it so if you'd rather not read then I totally respect that but I know that doing this will help me a lot.











If you read my previous spoonie post  then you'll know that we thought we had found the reason for my back pain and various other symptoms. Scans that I had last year showed that I had a Tarlov Cyst sitting at the bottom of my spine in the sacrum area but we didn't get much more information than that. Within a few weeks I had some more detailed scans and I was due to get the results in September, that was until my surgeon's secretary rang me to tell me that my surgeon wanted to see me a lot sooner, the very next week. I think that was probably the point when I realised that I wasn't going to be getting good news.

Unfortunately on the day of my appointment my surgeon wasn't around so I saw one of his registrars, I felt sorry for the guy to be honest as he didn't know me but had to deliver some not very good news. It turns out that my cyst is bigger than I had expected, than all of us had expected really. It measures at about 5.9cm long and it definitely stands out on the scans. I mention briefly in my last post that the cyst was eroding some bone in my sacrum and we managed to get some more information about that this time around. If my cyst keeps getting bigger then I'm at risk of fracturing my sacrum which would most likely result in more surgery and more metalwork, I'm not going to lie I have been laying awake at night worrying about that a lot.













Of course we asked about my treatment options, already knowing that they were anywhere from limited to non existent. They could operate and remove the cyst but I risk permanently damaging important nerves and leaving myself with life changing bladder and bowel problems. They want to do some epidural steroid injections to officially diagnose that the cyst is the root of my pain (it's pretty obvious that it is) but we don't know if we are going to go ahead with that yet as it's unlikely I'll get any decent pain relief from them and we risk causing more damage.

I feel like I have been given such an impossible set of decisions to make. If we do nothing then I'm left in with severe chronic back pain for the rest of my life, the numbness in my legs could potentially get worse and I risk fracturing my sacrum. But, if I let them operate then I risk leaving myself with even more life changing and life limiting problems. Sometimes I forget that I'm only 18 when doctors tell me things like this, I wouldn't even expect someone much older than me to have to make such decisions. Right now I feel somewhere between numb and scared, for so long we thought my pain was related to the spinal surgery I had and when we thought that we still had hope, suddenly it feels like there isn't much hope left.

Right now it seems the only way I'm getting through this is by ignoring the severity of it, I know I'll have to face up to the facts at some point but it's difficult to accept big things like this sometimes. The plan now is to get a referral to a neurosurgeon, someone with more expertise in this area, and really learn as much as possible about what my future could be like. I really hope I'm as strong as I like to think I am.
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8 comments

  1. I'm very sorry about the news and I know it can be hard but you just have to continues pushing through! I recently had a major surgery to remove a 10 x8cm cyst and although it was hard, you just have to fight on! Good luck and I hope everything works out :)

    Lotte | www.lottebeautybox.blogspot.co.uk

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    1. Thank you, I'm glad they were able to remove your cyst and I hope you have a good recovery x

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  2. Sorry to hear about this difficult news and choice you've got to make. I hope things work out in the best possible way! Writing is a great way to cope and its helpful for others going through similar circumstances to read. In a way, it is like the negative is actually positive because your sharing will make another feel less alone in their suffering. Sending you lots of <3s and spoons!

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    1. Thank you! Writing can be a really good way to cope, it definitely helps me :) I suppose yes, I just wish there was a positive side for me! x

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  3. 'You never know how strong you are until being strong is the only choice you have'. You've coped with so much already and unfortunately you don't have a choice but to carry on coping with all of this rubbish that life is throwing at you, but you're showing such strength and courage that you should be so proud of yourself. I'm always here. Love you x

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    1. Thank you so much lovely, love you too xx

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  4. What a lot to take on board :( Don't feel bad about taking a while to get your head around it.

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    1. Thanks, it's difficult sometimes to take a break from my blog etc when things like this happen but I'm glad that I have done this time.

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