Photo credit: Makeup Savvy
Last month I found out more information about the tarlov cyst that is sitting at the bottom of my spine, sitting on nerves causing me intense and severe pain all the time and slowing eroding away my sacrum. I didn't see my actual surgeon at the time so the doctor I saw went away and my case was added to the MDT meeting, a meeting where all kinds of doctors come together to discuss tough cases. Today I had a follow up appointment regarding my hip replacement and the doctor who happened to be doing it was that same doctor that saw me last month so I was able to find out the outcome of the meeting. Today also happened to be the first time that I cried during a hospital appointment.
Last month we were informed that potential surgery to remove the cyst would be risky but we weren't able to get too much information. Today it was confirmed, the risks of things like paralysis and incontinence were too high to proceed with any surgery. I asked to be referred to a surgeon I know of at Stanmore who is highly regarded in treating these cysts and it turns out his team had been part of that meeting and they had agreed that surgery was too risky. However, without surgery I risk fracturing my sacrum, nerve damage, increasing pain, numbness, bladder issues, the list goes on. Not to mention the fact that this pain means I can only walk a few steps around my house and even when I use my powerchair outside I am not able to sit up in it for long. When I got my powerchair we had no idea about these problems and whilst it gets me from A to B and I'm so grateful to have it, it just isn't perfect for me and adapted for my problems. And now these people are telling me that there is nothing they can do and so this is basically for life.
Long term I have no idea what this means, my oral morphine is already starting to have less effect so what happens when that stops working completely? I have already exhausted most pain relief options and the BuTrans pain patches I'm trying now aren't making any significant dent in my pain. I feel so abandoned. I've never come across someone with Marfan who like myself has had such a wide range of problems, I hate saying 'why me?' but I can't help but think it. It isn't just this cyst I have to deal with, I also need major heart surgery within a matter of years to replace my aortic root before it becomes a life threatening problem. I still need my left hip replaced but now that has become a much riskier procedure, the risk of my sacrum or hip socket fracturing is now high and the operation might have to be done a different way rather than the normal way my right hip was done. I still have pain throughout the rest of my body, dislocating and subluxating joints. Migraines. Fatigue. The leftover pain and stiffness from having spinal fusion. The list of problems feels never ending and I'm not sure how to cope with it all if I'm honest.
I'm terrified about the future, a future full of pain, a life spent laying down. I'm trying to stay positive, I really am, but when it's just bad news after bad news I'm not sure how to anymore. I don't write this for sympathy for attention, I write this because I need to do it for myself. I don't want my blog to become a place of sadness or pain but I just really needed to vent so I hope you can understand why I had to write this, normal posts will be back very soon. Thank you for all your support, it means a lot.
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