For the past month or so I've been very much out of touch with the blogging and social media world and in fact, just life in general. I've been ill several times and kind of just jumping from one doctors appointment to another, I've just been existing. I've also been thinking a lot about my future and what it might look like if I don't receive any help in terms of my chronic pain due to the Tarlov Cyst in my sacrum. I went down south to visit my family not long ago and I discussed this a lot with my Mum and I just felt the need to try and do as much as I can to change my situation myself and I'm not talking changing my diet and exercising. I feel like my life has been dictated my other people's opinions for so long, namely my spinal surgeon's opinions, a person not really qualified to be looking over the care of this aspect of my health.
Now, there isn't much I can do myself but what I can do is email doctors with knowledge in the area that my problems come under, or someone with a wider knowledge of Marfan Syndrome. I had a few people in mind when I was thinking about this and one of those people is Dr Alan Hakim who is the Chief Medical Advisor at HMSA, the charity that I volunteer for. I knew that he had a decent knowledge of Marfan and chronic pain and I knew that his work in hypermobility syndromes would mean that he would have at least heard of Tarlov Cysts and what affect they can have on the body.
I sent off an email and I was so shocked and overwhelmed when he replied within just 15 minutes, stating that he was willing to speak to me over the phone to discuss things further. He said he had 'a few thoughts' about my case and that alone is the most hope I have been given in a long while. I then spoke with him yesterday on the phone and he gave me a lot of good advice and has even written a letter for me to give to my GP so he can get the ball rolling.
Ever since I found out about the large and frankly unwelcome cyst sitting in my sacrum there was been one surgeon's name that keeps coming up again and again, Dr Casey. Ever since then the goal has always been to get to see him as he's highly regarded as the best person to operate on these cysts in the UK, however I've always been under the impression that he only performs this surgery privately, not on the NHS. It does now seem though that I might be able to be referred to his team but first I need to go through my regional services. I might be offered something through a neurosurgeon I see locally, such as draining the cyst, but these procedures don't have a high success rate and often the cyst just returns so it's more likely that I will be referred to Dr Casey in London after that. I basically just need to jump through the hoops to get where I need to be but at this point I really don't mind as this is the closest I've ever been to treatment or surgery before. Last year Stanmore, who look over most of my skeletal care, point blank denied operating on me without even considering my pain and it's impact in a benefit-risk assessment and we're hoping that a local neurosurgeon and Dr Casey will consider such issues this time around.
So, in reality I'm not that much further ahead and I won't be until I get referred to a local neurosurgeon but I have hope which I think is the important thing. Yes, I might still get denied surgery but at least I'll be under the right person and I'll have the ability to explain things myself instead of information being passed along second hand from my spinal surgeon. Most people would probably find it odd that I'm so desperate to have another surgery, I've had 3 so far, but honestly if you were in my position you'd be begging for them to do something, anything. Laying down all day, leaving the house once a week, being stuck in one room for most of the day. That's not the life I want for another year, let alone my whole life.