Week Two in Kunming… A little bump in the road

So I may have left out a small detail in my Week One update.. mainly because I didn’t really want to share until it was all over with, which it pretty much is now, so I can write about it. Also, just noticed that this is a VERY long post, so grab a cup of tea, glass of wine or whatever and enjoy…

As I mentioned before, part of becoming an inpatient at Tongren Hospital involved various MRI, CT scans and X-rays. I have always had a strange sixth sense feeling that something in my back isn’t quite right (other than the obvious spianl cord damage and paralysis). And I have also always been very aware that they often suggest surgery out here in Kunming as part of the rehab programme. I have always had an open mind about this.. obviously spinal sugery isn’t my most favourite activity, but I always decided that I would cross this bridge as and when it occurred out in China.

So when they told me that my MRI had shown a rather large arachnoid cyst growing right next to the spinal cord I actually wasn’t all that surprised. I won’t go into too much technical ย info, but basically the spinal cord runs all the way down the length of the spine and is shown on an MRI as a black cord surrounded by white fluid. In a perfectly normal spine it would be untouched and looking perfect, but as you can see from my MRI last week, my spinal cord is far from perfect. Around the T6-T9 areas you can barely see they black spinal cord at all. It is in fact being compressed quite severely by an arachnoid cyst that is growing in the area. This is obviously not ideal as it would be preventing any potential messages travelling freely through my injury site and down to my legs. The picture below sort of demonstrates what i am saying.

MRI ScanNow I’m not a naive kind of person, and it is obvious that there is lots of damage in the area that isn’t related to the cyst. My whole injury site is a bit of a mess and who knows how much of the damage is from a growing cyst and how much is from the actual accident. Even without the cyst there is substantial spinal cord damage, but hey, that never stopped me before so why would I let this little speed bump stop me?!

The Chinese surgeons here were really recommending surgery for me, as they believe that the cyst had been growing pretty much since my accident and if it got much bigger, or if it in fact ruptured, then quite a lot of damage could be done. It was growing upwards at T6, and if it had caused a hole in my spinal cord at that level (which they feared was quite possible) then I could have been paralysed from higher up my torso. Cysts can be fairly common after spinal cord injuries.. think of it as a sort of blister. There is a slight adhesion or cut in the area, and the constant rubbing and friction in the area causes it to grow and grow.

So I shall answer the million dollar questions that everyone raised back home when we mentioned that surgery was on the cards. Why had this not been detected and operated on in the UK? Why didn’t I fly back home and have it sorted out there? Well the first answer about it not being detected in the UK is fairly simple. I haven’t had an MRI scan since just after my accident, I have only had CT scans for my various back problems. I hadn’t really shown any symptoms for an arachnoid cyst (muscle weakness and severe pain being the main ones) and I guess they don’t give out MRIs on the NHS unless you have a good reason, so no one has really looked at what is going on in my spine since my injury.

And the second answer, why didn’t I want to fly home to be operated on?? Well honestly, I think I trust the surgeons out here in China a lot more than in the UK. And I am fairly positive that UK surgeons wouldn’t even perform this surgery if I wanted it. In China this is a pretty standard operation. If someone has a spinal injury, the first thing they do is open everything up to relieve any swelling, blockages etc and allow the spinal cord to wriggle around and flow freely within all the fluid that surrounds it. They have special spinal surgeons that deal with the bone side of things as well as the neurological spinal cord side of things. In the UK I had a specialist orthopaedic surgeon who is good with bones, but will go nowhere near the spinal cord. And that’s just the way it is. My surgeon out here Dr Liu has performed this kind of surgery time and time again, and to them it really wasn’t a big deal.

So here we are discussing surgery options and for some reason we are all looking very relaxed and happy.

Kunming

 

So being the extremely impatient person that I am, I decided to just go ahead and have the surgery ASAP.. so i was booked in for Monday morning and I had a few days to prepare myself mentally for another bout of being bed bound, uncomfortable and reliant on everyone else around me, all mixed in with being in a foreign country where I speak very little of the language (I am learning though!!)

They also wanted to look at the position of two of the screws in my spine as they felt that they were a little bit close to the spinal cord. This is not news to me, it was brought up by a private specialist in the UK, who said the positioning was questionable, but moving the screws could be quite dangerous so it may be best to just leave them. I think that they attitude in the UK can best be summed up as ‘you’re paralysed, there is no cure for paralysis, so let’s just fix the broken bones and you can get on with life in a wheelchair’.

Anyway… the surgery went ahead on Monday morning, and well there was a slight surprise when they opened me up. Something that the scan hadn’t shown, and something that the Chinese surgeons have been pretty astounded by. I also want to say that I was under no illusions that this would be a surgery to ‘cure’ me… I was well aware that I wouldn’t wake up and be able to wiggle my toes. Rather I saw this operation as preventative, I do not want further spinal cord damage, and if my spinal cord can move freely around in the fluid and have the best chance of making some new connections then I’m going to take that opportunity.

Here I was being moved from my bed to the trolley for surgery. Looks quite scary that I am surrounded by so many nurses, but it really is they way they do things around here. I felt very safe, relaxed and calm about the surgery, which I actually have never felt before.

I am under that duvet somewhere!

I am under that duvet somewhere!

Post-surgery mugshot!!

Post-surgery mugshot!!

As I said, the surgeons had a couple of little surprises when they opened up the spinal area. They actually found two little pieces of bone that were crushing the spinal cord along with the cyst.

KunmingKunmingI use the word ‘little’ quite loosely because the spinal cord is only about a quarter to half an inch thick, so these small bone fragments are actually pretty large when they are wedged next to the spinal cord. I think the Chinese surgeons are secretly quite smug about this discovery, well more that they are so horrified at the awful surgery that I have had in the UK. They would never ever allow someone to have their spine in this type of condition. So they are taking my scans, samples of the cyst fluid, the pieces of bone etc etc to some other specialists to show them my case. They seem to think it is quite unique, but who knows, there may be LOADS more people out there who have similar problems but they are just undetected. (Not trying to make everyone with a spinal injury completely paranoid by the way).

They have filmed the surgery and were so excited to show us a screening of it. Their favourite part was when they peeled back some of the cyst and the pressure inside it made it literally explode (pretty gross, but actually quite fascinating to watch). They made us re-watch this specific part over and over, and they even took photos of our reaction to the video. They are making a DVD for me, so I will share that once I have it.. but I will put a graphic content warning on it for the squeamish people out there.

Understandably it has been a pretty up and down time since the surgery. The nursing staff have been exceptional, and they have been so meticulous with my care. My parents have also be incredible; my mum is staying in my hospital room with me, and I cannot tell you how much comfort that gives me to know she is here with me. Dad has been amazing at spending most of his time by my side, but also keeping everyone back in the UK up to date with all of my progress. And I have had regular visits from the other ‘foreigners’ here, which has been a very welcome distraction during the lonnng days!

It is now Friday afternoon, so I am actually only 4 days post surgery, but desperate to go back to the apartment. I am slightly fed up of being in hospital, but I think I have to stay here over the weekend and then will be allowed home for another week’s rest before getting back in the gym (literally cannot wait for that) Also a massive contrast to post surgery in the UK, I have barely been allowed to sit up in bed. They insist that I stay lying down and just get turned every few hours to prevent pressure sores. In the UK they are very quick to get you upright, transferring out of bed and wheeling to the nearest exit. But here they are not letting me anywhere near my wheelchair, in fact I haven’t even seen it all week.

So here is me now… not looking my best, but the wires and machines from around me are slowly disappearing and I feel like I am on the mend. For everyone at home that has been messaging me and keeping me entertained, thank you. It has made me very homesick at times, but on the whole it is helping me stay positive. I know you have all been very worried about me, so hopefully you can see from this photo that I am doing ok…(ignore the graze thing on my forehead… apparently being face down on an operating table was too much for my ‘baby soft skin’ and so I now how quite a large scar, but hopefully nothing permanent)

Kunming

 

9 thoughts on “Week Two in Kunming… A little bump in the road

  1. Hi morning I just thought I’d introduce myself my names Simon and I’m a hairstylist and have the pleasure of working with you’re lovely sister Pip.I met your mum and Granny last spring too on the golf course out at Sussex on a photo shoot your amazing Gran was stood in her plus fours in the middle of a blizzard explaining to me me how she had to stop swimming in the ocean in Cape Town because of the sharks!Reading you’re blog it seems all the women in your family are pretty amazing,best wishes Simon x

  2. I am looking forward to hanging out with you and Ali soon! Get ready for a girls luncheon out in Kunming together. Glad to hear you slowly recovering. Let me know if you would like anything from the States!

  3. Hi
    I have been following your blogs and videos and am optimistic you will one day achieve your dreams.
    In 2011 I had to have a calcified disc t8-t9 removed from my spine as it was doing what your cyst did and severing my spinal cord. I had a huge amount of major surgery to save my legs which included moving my heart and collapsing my lung before drilling the disc out and eventually left hospital 6 weeks later in a wheel chair learning to walk again. The chest drains were uncomfortable and it was hard trying to do anything for myself but two years later, although I have severe spinal cord damage and neurological damage, I am able to walk and continue my life, albeit a little more careful than before.
    Keep up the good progress, I have found pilates is helping with the neuro pain, and magnesium supplements have replaced medication.
    Caz xx

    • Wow that was so awesome to read when I woke up this morning… I love it when people share their positive stories with me.. And it really motivates me to keep going. I’m getting a little bit stronger every day since the surgery, and now just can’t wait to get back in the gym ๐Ÿ™‚
      Your surgery sounds extremely intense… But definitely worthwhile.. A very courageous decision.
      I will definitely look into magnesium supplements, and I am hoping to start some Pilates soon.
      Thank you for your comment ๐Ÿ™‚
      Xx

  4. Wow suz your really going through it, I can’t believe what they found and I really don’t get why all spinal injures don’t have regular mri scans because cysts are so common. All the best in china Hun, love reading your updates xxx

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