Spoonie Update #4 | My Spinal Appointment

I've got to be honest I'm not really sure what to say or how to start this post, I usually find it so easy to talk about my health and stay positive but things have been a little different when it comes to the hospital appointment I had on Friday. It's difficult to explain things without a little context but I'm not going to go into tons of detail so I recommend you read my Spinal Fusion Week 1 and Spinal Fusion 6 Months Post Op blog posts if you aren't familiar with my story and want to know more.

My genetic condition Marfan Syndrome caused me to develop Scoliosis (a sideways curvature of the spine) and in 2013 I had spinal fusion surgery to correct this. This operation involves using titanium rods, screws and pins to move your spine into the correct position and then your spine slowly fuses into that position. For most people, especially those who have the surgery when they are young, the operation can have a really positive outcome and you can go about your life as normal. Unfortunately this has never been the case for me, I've had problem after problem and needed a second surgery a year later to replace a screw that was sitting on a nerve and causing severe leg pain. I thought it was over after that, I could go back to school and live like everyone else but the pain that I had felt before the surgery in my lower back quickly returned and for the past year it's been so severe that I have needed to use a wheelchair and spend most of my time at home laying down.

We've not had any answers for why I have been suffering with such severe pain post op, that was until Friday at least. I saw my spinal surgeon and expected to go in there and be fobbed off once again, I was ready to ask about getting a second opinion but I didn't get the chance.

MRI and CT scans that I had done in August last year (and never got the results of until now) showed that I had something called Tarlov Cysts sitting below where my fusion stops, so from L5 down but they are mainly in the sacrum area. Things are about to get a little medical but I thought I'd explain exactly what they are.

Tarlov Cysts are the dilation of the nerve roots that run along your spine, they are abnormal sacs that fill with cerebospinal fluid (CSF) and they then proceed to compress other surrounding nerves resulting in progressively painful nerve pain and other symptoms such as headaches, bladder problems and numbness. You can get them anywhere along your spine but they are most commonly found at the sacrum level, the S vertebrae. Tarlov Cysts themselves are common but having large symptomatic ones is not and there is no cure for them. This is a problem that is associated with the genetic condition I have, Marfan Syndrome.

So, I've got cysts sitting along the bottom levels of my spine. It's what has been causing my severe back pain that only eases when I lay down, my headaches, leg pain and it also explains various other symptoms. I'm not going to lie, when I looked at my scans I was scared. Even my surgeon was shocked at the size of the cyst(s) and didn't sugarcoat anything when telling me about them. There also seems to be some early wear and tear in a few discs which the cysts may have caused but they most definitely have caused the erosion of my sacrum that the scans show and it may be the case that in the future I'll need further surgery to stabalise this. I'll be having more detailed scans soon and then my consultant with refer me to a neurosurgeon but I've been told to prepare myself that pain management may be my only option. I've already done my research and he seems to be right, there are a few treatments out there but they have varying levels of success, are risky and you'd have a hard time finding a surgeon who would even attempt such a surgery. I know there is a surgeon in America who seems to be highly regarded in this area but of course that doesn't help me.

I've got to be honest, I'm scared. Never did I expect that they would find a new problem. The spinal fusion may have made the cysts worst but the likelihood is that these would have been growing some time before I even had the surgery but back then they would have been too small to even take notice of. I think I've always known at the back of my mind that this problem is something that cannot be fixed but actually having someone tell you that for near certain is a very unpleasant feeling.

I'm not sure what else I can say really other than thank you to every person who donated towards my powerchair, it's arriving on Wednesday and it is clear now more than ever that my problems will not be going away and the powerchair is going to be something I'll need long term. It will change my life and give me freedom so I'm glad to have something positive to focus on through all this.

I know you all say how strong I am but right now, I'm really not feeling very strong.


  1. Hi. As a fellow Marfan sufferer with 2 daughters who inherited it from me I would just like to let you know that you have expressed extremely well the issues and the experiences with the scoliosis aspect of Marfan. If and when the heart aspect rears it's head in the form of surgery please feel free to contact me or my 16 year old daughter who have both had the aortic root replacement. I'm happy to give you my email or connect on FB if you like. Good luck with everything. You are fabulous and I think the work you have put in to help inform people is excellent. Best wishes. Paul

    1. I'm so glad you've found my posts to be helpful! My aortic root measurements have been stable for a few years but surgery is definitely a when, not an if, so thank you, I really appreciate that!