My Father and I returned from our three week visit to Washington D.C. and Virginia at the beginning of December. The three weeks were filled with many post-op appointments, check-ups, physical therapy rehabilitation, vision therapy rehabilitation and even a White Tie Gala event! To say it was a busy time for us is an understatement – only now I am beginning to feel the exhaustion and experiencing a ‘flare up’.
Overall, I am happy to report that I have received predominantly good news from my post-op checkups for my spine, neck, heart and vision examinations! My dedication and commitment to physiotherapy, hydrotherapy , working out at the gym 3 hours per day, pain management and nutrition management has paid off these last four months. Why? Because in all my Upright MRI scans I had done in November in the U.S.A. of my whole spine came back showing that I have developed an incredible amount of muscle around my spine and back that have actually reversed multiple instability problems that were seen in my scans four months ago in my thoracic, cervical and lumbar regions!
This truly shows that if you are able to set your mind on a goal it can be achievable no matter how difficult or impossible the challenge may feel. But, I could not have achieved this great result without my dedicated and motivated medical teams that have been so influential with my rehabilitation care in the U.S.A. and U.K.
I am currently in the ‘clear’ for any further spinal surgery this coming year which is a huge relief, but only if my muscles decide to behave themselves and keep up their job of stabilising my spine. However, as we all know Ehlers-Danlos Syndrome can be very unpredictable and the realism is that in the future I will most likely need to have a full spinal fusion when it begins to progress and worsen with time. But, I am hoping that I will be able to prevent the progression of this connective tissue disease by continuing the lifestyle that I have adapted to towards specialist physiotherapy, hydrotherapy, pain management and nutrition management.
Unfortunately, my post-op consultation for my pioneering stent brain surgery did not go as planned due to a major ‘miscommunication’ on the cost of the procedure which we found out to actually be £90,000! Sadly, this meant I was unable to have the CT Angiogram that I was scheduled for and instead just had a CT scan to see the placement of the stents in my brain. This is a huge problem.
Why do I have to have the CT Angiogram in the U.S.A.? Because the special CT Angiogram at the University of Virginia (where I had the Brain Stent Surgery on 21st June 2016) is to measure the different pressures in my brain and monitor the blood flow in the veins to see if there have been any changes or areas of concern since the three stents were inserted this past summer. It is imperative that I have this procedure done no more than 6-8 months post-surgery because it is so pioneering and high risk with Ehlers-Danlos Syndrome patients (me being #54 in the world) and being done by only one neurosurgeon in the world at the moment. What is also concerning is that I have been suffering from mini-stroke episodes and some increased pressure headaches these last few months which could suggest there is another clot/blockage problem in one of the veins in my brain. This could therefore possibly lead to further brain surgery.
So currently I am in the process on ‘revamping’ my medical crowdfunding campaign aiming to raise £90,000 in three months. Any support would be greatly appreciated!
My vision therapy examination results, after having three weeks of intense therapy, were very encouraging and positive. They showed that I have regained 100% of my peripheral vision – four months ago I lost 70% of my peripheral vision – and the major suppression and binocular instability problems with my right eye has actually begun to balance out with my left eye (see Middle Image results). You can see the incredible progress I have made since April 2016 (see Top Image results) when I first had this test to November 2016 (see Middle Image results):
April 2016 results also reflect when I was diagnosed with CVST Brain Clot and collapsing of 3 major veins. It showed that my left eye was extremely unstable and my right eye was not ‘intaking’ any information or images causing me to experience some symtoms like double and blurred vision, balance problems, inability to read, memory problems, inability to fuse images, loss of depth perception.
The vision examination results also revealed that even though I have suffered from significant permanent brain damage, other areas of my brain have been able to ‘light up’ and be used substituting the roles which the areas of damage used to do. My vision therapist was so excited and thrilled to see these results as I completely surpassed his expectations. Originally, he thought that with my case it would be near impossible to regain the peripheral vision loss, rehabilitate the suppression and binocular instability issues (causing many problems such as memory loss, reading difficulties, inability to see 3D or depth, inability to visualise etc.) due to the amount of brain damage that I have suffered from this past year. But because of my dedication and commitment to all of my rehabilitation and change of lifestyle, I have been able to get to this point of my vision recovery that my specialists never thought possible. This news was extremely overwhelming for myself and my family seeing that all the efforts and hours of my rehabilitation is creating positive results that essentially will change my future.
My patient advocacy role was highlighted at the annual CSF Gala Event on 19th November 2016 at The Anderson House, Washington D.C. where I was honoured and grateful to have been asked to be a ‘Patient Guest Speaker’ sharing my patient story and experience of my 6 year diagnosis and medical journey this past year. It has also opened up new opportunities for me to speak at other worldwide medical conference events and participating in meetings with U.K. government which I am very excited to take part in. I reminded the audience:
“Don’t be fooled by my exterior disguise of my smile, dress and normal looking 23-year-old self. It couldn’t be further from the true representation of my battle and suffering. A year ago today is a poignant memory for me and my family. I received my results and was told I urgently needed to fly half way across the world to receive my first lifesaving surgery. But this soon turned into a series of unexpected events, a lengthy stay of 8 months and a total of 4 neurosurgeries and brain surgery. The journey was long, challenging and life changing. But I, alongside other patients, have made the impossible, possible and somehow made it through.”
It was a wonderful event where I had the opportunity to meet a few other patients who mirrored my life, diagnosis and multiple surgeries. It was so humbling meeting others who have gone through similar difficulties, suffering and hardships, but one thing we all had in common was our faith. I believe that all patients, specialist medical professionals and philanthropists at the event all had faith which has allowed the medical community to advance expertise and pioneering surgery in Ehlers-Danlos Syndrome and Chiari patients. I hope I sprinkled enough inspiration to the audience to never give up and always have faith that it will lead you to your true destination and purpose. What a memorable evening! I will soon share a link of my ‘Patient Story’ speech on my blog once it has been uploaded on the CSF website.
Overall, I am so relieved to see that my dedication to recovery and rehabilitation throughout this year (especially these last four months) is beginning to pay off and I am now seeing and feeling the positive results from all my neurosurgeries, brain surgery and rehab therapies! Cheers to an early Christmas present knowing that I am predominantly in good health, heading in the right direction and getting my life back on track for the new year.
Thank you all for your support! The journey is long, challenging and unpredictable and in no means has it been easy. But life is not supposed to be easy. I have found that with the most hardest challenges go with the greatest rewards and best days of your life. With all of this mixed emotion of good and bad news that I have experienced from this first post-op visit, I wish I can inspire a sense of hope in your life and that no matter how hard it can get, always remember you are strong enough to get through it. But first, it always begins with belief in yourself and your ability to visualise a positive ending.