I wanted to write this post to share with you all what I have been diagnosed with and the new journey I am now embarking.
I started to feel unwell just before Christmas, I had terrible head rushes, pain in my neck that ran down my shoulders, very weak arms and started noticing difficulty in swallowing and simple tasks became difficult.
I was taken to A&E as my neck ceased up and felt like it was getting tighter, my limbs were shaking uncontrollably and worse of all I was struggling to breath. When taken to A&E and after a few tests the Dr said I think you’re having an anxiety attack and there is no reason to MRI or scan you … Silly Dr if he scanned me I would have known sooner! I have never had an anxiety attack in my life and left the hospital knowing something else was wrong – lucky I did!
After seeing my doctor and being referred I had a scan a few weeks ago and little did I know it was more than just a neck ache. When my Neurosurgeon sat me down he said you do have a bulging disc however it was the least of my concerns this isn’t the root cause of your symptoms I actually have a condition called an Arnold Chiari Malformation – in normal terms my brain is falling out of my head! My brain has decided to fall out of my head and is pressing on my brainstem, its fallen so much my CSF (Brain Fluid) flow is blocked and the pressure of it dropping is whats causing my difficulties in swallowing. I also have Cervical spondylosis which we are not sure has been speeded up because of whats happening in the brain.
I have also been diagnosed with a very rare condition called syringomyelia in normal none medical terms its a cyst that has formed in my spinal cord as my brain fluid is blocked the waste has gathered, and not going around properly. Unfortunately this is a progressive condition and as its in my spinal cord its slowly damaging my nerves thats not reversible, the pain it causes is unbelievable as well as making my grip weak, my leg feels like it doesn’t belong to me any more, I can’t feel the difference with Hot and Cold, I have lost my gag reflex on the left and many other symptoms, we just have to pray the surgery can help.
So cut a very long story short I have now had my final scan which lasted a total of 75 minutes to determine how far its progressed and check my brain and spine doesn’t have anything else scary in there along with checking I don’t have multiple syrinx’s.
I have had a lot of messages asking if what I have is linked to my Ulcerative Colitis however its completely separate, and I have just been unlucky. This is a condition that you are born with however I lived my whole life not knowing.
I have my Pre Op and final appointment to discuss my scan results on Monday and will be booked in for my surgery late next week or the week after.
After having a few weeks to take everything on board I wanted to share my journey with you all and as you have all been incredibly supportive of everything we have achieved over the last few years I wanted to let you all know myself – I promise to keep you all posted and I am still as determined as ever to raise awareness of IBD and living with an ostomy.
Thank you all for your love and support I am so appreciative,