To Operate or Not To Operate... That Is The Question

It's been quite a while since I've specifically talked about my health on my blog, and that would be because for the last year nothing too eventful has happened. There's been no major surgeries thankfully and not many hospital appointments either, all because things have come to a bit of a standstill because of my spine. For example. I still need a total left hip replacement but my surgeon is rightfully hesitant to proceed without as much knowledge as possible about my spine. And well, things with my spine haven't moved along much in this past year since I saw my neurosurgeon for the first time.

Maybe that sounds like a bad thing to you, my referral was lost and things have just taken a long time but actually, I've spent this year being very relieved that an appointment to see him again hasn't come through the post. I've been enjoying not having to think about a looming decision that I have to make, the biggest decision of my life so far. To operate or not to operate?

Photo by Maciek Tomiczek

For those who don't know I have a genetic condition called Marfan Syndrome which has caused me to develop several secondary conditions, one which is called a Tarlov Cyst. It's a type of spinal cyst that grows out of a nerve root, mine is in my sacrum area which is a triangle shaped bone at the bottom of your spine and my cyst is about 6cm x 5.5cm, which is quite big for it's type. The cyst is the biggest reason I that need to use a powerchair with tilt and recline, the pain it causes worsens upon sitting because of the pressure placed on the affected nerves. Some days it takes 5 minutes for this pain to become unbearable and other days it can take an hour, which is why the tilt and recline functions on my powerchair are so important, they allow me to relieve and manage my pain throughout the day.

Having a Tarlov Cyst isn't a rare thing, they come up as incidental findings on some people's MRIs but they become rare when they start causing pain, bladder and bowel function problems, reduced feeling etc. There's currently only one surgeon in the UK capable of successfully treating this problem, with I think 2 more being trained up, so it can take a while to see the right person, it took me 2 years but I know for others it's been longer. You also have the added problem of some doctors not believing they can be symptomatic, even when I became a powerchair user some of my doctors were still disbelieving and it's only this year that my spinal surgeon who operated on my Scoliosis has finally taken it seriously.

Photo by Maciek Tomiczek

I initially saw the neurosurgeon last year who confirmed how complex my case is and he wanted me to see another neurologist before we started any conversations about risky surgery. Well, that referral was never made for some reason and so it took me about 6 months to see this neurologist who said they would want to do ICP monitoring prior to any surgery, which involves screwing a bolt into your skull and inserting a pressure monitor to measure how much pressure there is inside your head, so if I said yes to spinal surgery I would be saying yes to that procedure as well. That really threw me. That was months ago now and I suspected that my referral to see my neurosurgeon again (but at a different hospital) had also been lost but it took me about 2 months and going through a multitude of numbers to get through to his secretary, which I managed last week. She reckoned that I could be seen within weeks now. That terrified me a little, I'm nowhere near ready to be deciding whether to have surgery yet.

If I have surgery I risk nerve damage, paralysis, loss of bladder and bowel control and more pain, as well as there being a chance that it just won't work and a chance that the cyst will come back. If successful though surgery could lessen my back pain meaning I could sit up longer and that might open the door to being able to return to education or maybe being able to have a part time job. Writing this down, the pros and cons I guess, has really helped me and I've figured out that thanks to the quality of life my powerchair has given me the biggest things left to gain from successful surgery are potentially being able to do an open uni course or working a part time job, but is that worth risking making things 10 ten times worse? Is it worth risking the quality of life I have now? I certainly don't enjoy relying on benefits but this year I've finally experienced things that I should have done years ago, I'm the happiest I've ever been and right now, I'm not entirely sure if it's worth risking that.

Photo by Maciek Tomiczek

Of course I won't make my final decision until I've thoroughly talked to my surgeon and got all the facts, and I can also say no right now and change my mind months or years down the line. It's also important to find out whether he thinks the cyst will continue to grow and cause me problems without surgery, I don't want to leave things too late and regret not having surgery when it was an easier and less risky operation to do. As you can see, there are a lot of different factors that go into this.

The main thought that keeps going round in my head though, is this; how does anyone expect a 21 year old to make a decision as big as this? And that's coming from a very mature 21 year old.


  1. Aw Shona! I know marfans affects us both differently but these are similar questions that I've questioned on more than one occasion. How long do you have before these decisions need to be made? The way I see it is can it help you now? Every surgery has its risks but will it do you more good now/ in the future? Sending you hugs as always xx

    1. I think I can probably take as much times as I need and I can always say no now and change my mind down the line. I think if I'm honest, I've only had my life back for 6 months and I'm nowhere near ready to risk that yet, there is so much I'm yet to do xx

  2. Wow - what a decision to have to make. Hope whatever you decide works for you.

  3. This is such a huge decision to make and I think anyone having to weigh up the options like that at any age will struggle !! Hope your surgeons and you can come to an agreement about the best thing to do.
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