
Finally I have answers for my symptoms and why I haven't felt like 'me'. I wont lie what I am about to explain is ... sad, but is part of my journey and is a story I've decided to share as I want to raise awareness of how crippling 'Rheumatoid' can be – it’s not ‘just’ arthritis!! I also want to express how important and vital it is to believe in your self and listen to your own body.
Over the past month or 2 I've been having tingling in my hands, feet, 'crawling' sensations up my legs... tired and feeling just run down and at times a bit all over the place. My doctors believed I had 'anxiety' which I declared ‘they’ were a bit short of a quid and I refused anti-depressants. I wont lie I am a lion when it comes to my body, I 'know' my body and I’m not scared of telling doctors what I think... I’ve been around long enough fighting this disease to know when something’s wrong. One day I ended up breaking down in tears with my doctor as know one would accept something more was wrong, finally a doctor examined me and found a heart murmur which I'd never had before. I was sent for an ECG and MRI.
Being persistent and knowing my body has saved my life.
The MRI showed my spine has migrated into my skull towards my brain and spinal cord.
This is a result from Rheumatoid. It has destroyed my neck/spine. The C1 and C2 vertebra's are bone on bone and the C1 has naturally fused to my skull, the Rheumatoid has destroyed the ligament, which holds the odontoid in place from migrating into the skull.
I need high-risk surgery to stabilize my neck. I have no choice. If I don’t have the surgery – the outcome is self-explanatory. I wish I had a choice.
It's high risk surgery as this this is the top of the ‘tree’ that feeds the body, it’s surrounded by nerves, spinal cord, brain stem... a lot of things which the neurosurgeon will have to work around. Anything can happen but at the same time things can go right.
The symptoms I've been having are neurological and part of 'this'. The longer I leave my neck like this the higher the risk I will have nerve damage, paralysis and the unthinkable. My spinal cord is OK but I need more scans at different angles as its extremely close and could be compressing.
Sadly I had an MRI done in 2011... but... it was misdiagnosed, no one saw it?! (it was pretty obvious). The Odontoid had started to migrate back in 2011 and over the past 5 years it's progressed at a guess 1mm at a time. Which I look back and it's bloody crazy! I’ve been riding horses, traveling the world, doing hard-core gym sessions, training for the Paralympics, working on my farm lol I admit I don't do things by halves. So I've been 'lucky'. Am I angry it wasn’t picked up 5 years ago. Yes. I’m furious. But at the same time… I’ve lived and I’ve had an amazing 5 years.
Since my news I haven't stopped at just one neurosurgeons opinion... I've spent days reading and I haven't stopped when I call up for an appointment and they say they cant see me for a 'few months' – I tell myself screw that and I send them an email or fax with a letter/scans and I feel blessed that these surgeons have taken the time to read them and squeeze me in within days knowing my situation is serious. You always have to push above and beyond.
Lets be honest - there's not going to be a dumb neurosurgeon, but I need to find someone I believe in, is confident and understands me... my life.
The 1st neurosurgeon I saw... lets just not speak of him. I did not like him. I told him I did not like him.
The 2nd neurosurgeon... I love him, he's worked on many sports people, he was confident, took his time to explain things and when I was walking out of my appointment he introduced me to a lady he had operated on the week before (same operation).... and she was walking!! That was a huge relief to me and after 2 weeks of grief, not eating, crying everyday... I smiled and went to the hospital cafe and got something to eat – a white chocolate brownie and yes it was good!
Will I ride again? In my mind and my heart - yes I will. My recovery is going to be very long, it could take a year or more but neurosurgeon #2 assured me 'we'll get you back on a gg' ... it may not be international competition but just to have that freedom of being in the saddle is comforting to me. Am I scared that after the surgery I could fall off? Well, it's a risk. - You can live your life in fear and not 'live’... or you can live and make the most out of life. My hips were replaced in 2004 and 2005... if I fall off with them the outcome would be horrendous... I could be driving my car and someone hits me, or I could be crossing the road and get hit... life is a risk and fear cant stop you from living.
Speaking of 'fear', when I first found out this news I was crippled by fear, I was convinced I would die or become a quadriplegic - this was from information from neurosurgeon #1 and googling.
I admit I lost my 'fight' and my fear took over but I decided i've fought all my life... why am I giving up now when I need my fight face on the most. That's when I set out to find other neurosurgeons and searched high and low for others that have had this surgery ..... which I admit there's not that many. I've decided when I'm a bit stronger in my mind about my situation... I'm going to write a blog and do some video vlogs so I can help others out there that may be going through the same emotions... the fear... the frustration.
It's a horrible feeling going into the unknown.
My family, Michael, friends have saved me. When I haven't been strong they've been strong for me.
All my health professionals - my chiro, physio... have all given me their personal numbers to call them at anytime when I’m having a bad day and need someone to talk to. I'm overwhelmed by the support I’ve had - I’m not just a patient to them.
The para equestrian officials have been amazing and showed so much support and I’ve been able to call at all hours for a chat.
I would be lost without the army of support around me. As I do feel alone, I don’t know why but when you’re at home with only yourself – the brain wanders. When that happens I’m learning to pick the phone up or talk to my dogs ?
My horses... they don't understand, my beautiful young stallion Hanna Poderoso 'Sam' - looks at me as if he's saying 'why the f aren't you riding me... I'm bored' ... Eddy... my horsey soul mate - he knows... he leaves his dinner and rests his head in my chest while I cry, it's heartbreaking. He's proven he's one in a million time after time after time. Knowing this news I've been teaching Michael to ride... never been on a horse in his life but he's currently cantering on Eddy who has been so careful and understanding. It makes me very proud.
Celere will be staying in England to further his education with Martin who today has another competition. Everything will all stay the same and be there waiting for me when I'm ready, I’m not selling any horses or jumping into decisions.
I don't want pity, please don’t feel sorry for me! What is done is done. I want my story to really hit home – **believe in yourself and know your body**. Don’t be scared to be a lion and fight for your health and be smart… get a 2nd opinion… get 20 if it will make you feel better. Most of all live life and tell you’re loved ones you love them… don’t get so caught up in routines or self-absorbed goals – live life. xx
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