I believe in mind over matter. I believe that hurdles in life are meant to be jumped over, not as something to stop us. I believe in miracles and blessings, both great and small.

I am relieved to announce that my brain surgery and insertion of three stents on Tuesday 21st June was a success!

My medical crowdfunding campaign is still ongoing needing to reach the £300,000 goal due to this recent necessary brain surgery being extremely expensive that could only be done by one of the few EDS specialist brain surgeons in the U.S.A. Thank you all for your continued support thus far for my previous 3 neurosurgeries, but please do keep spreading the word and my story, and donate here.

My angiogram on the morning of the surgery confirmed the diagnoses that were interpreted from a CTA scan from my previous consultation on Thursday 16th June:

  • IIH/Intercranial vascular stenosis and abnormal Venous Pressure Gradient – main cause and contributor to abnormally high CSF pressure from lumbar puncture.
  • Narrowing/blockages and beginning of collapse in multiple areas of my Sagittal Sinus and Right Transverse Sinus Veins. Must be fixed by inserting 3 stents to prevent complete shut-off of blood to the veins, risk of clots creating further blockages, risk of blood unable to drain causing brain to become very sick.
  • Left Transverse Sinus Vein is unrecoverable and too dangerous to be fixed because it has fully collapsed unable to drain blood from the brain to my Left Jugular Vein. We are unsure how this happened, but most likely (i) a CVST blood clot cut off blood supply to this vein and it collapsed over time (ii) I was born with a small vein and it collapsed over time.

 

Even though this is considered major brain surgery, I am left only with a puncture wound and a lot of bruising in my inner thigh. The three stents were inserted by using a long catheter that entered through my Venous Vein in my inner thigh area that was then pushed up into my Sagittal Vein and Right Transverse Vein in my brain. What wonder medicine and technology can do these days!

Even though I suffered from the most excruciating headache (felt like the worst ‘brain freeze’ or ‘ice-cream’ headache), sensitivity to light, and vomiting of blood in ICU for the first 12 hours of recovery, it was completely worth it.

Why?

Because for the first time in over a year, just 12 hours after stent surgery, I experienced what it felt like to have sensation back in my feet and parts of my legs, clarity in my thoughts and speech, and my chronic headaches gone! 

I never thought this day would come, but it has!

So who am I forever grateful to this life-changing surgery?

One of the most intellectual, caring and considerate Dr./Surgeon I have ever met: Dr. Liu. I cannot express my gratitude enough to this incredible Neurosurgeon, his team and nurses at the University of Virginia (UVA)! The nurses after my surgery were extremely attentive throughout my stay on the sixth floor ICU. I was consistently being checked up on during the night and day making sure my vitals and pain levels were under control, and my entry wound was not bleeding. Every nurse had such a kind soul and a way to put a smile on my face even though it felt like I was going through the worst recovery ever.

From my first visit on Thursday 16th June, I knew instantly I was in the safest hands possible. I felt very confident with his decision on moving forward and he made sure I understood everything about the diagnosis and plan for surgery. Most importantly, focusing on the most safest and effective treatment. Any questions I had for him, he took his time to listen, explain thoroughly and was very honest about the possible outcomes.

Going into this surgery, I was informed that this is a new area of medicine and EDS patients as there have only been just over 50 EDS cases who have had the Venous Vein stent surgery beginning a year ago. So, there was no guarantee that my neurological symptoms would improve as each patient reacts differently and the longevity of the EDS stents is unknown. But I was willing to take the risk having this ‘avante garde’ neurosurgery.

His approach to medicine and to his patients is unique. Dr. Liu is willing to push over boundaries that have not been crossed for EDS sufferers and takes each patient’s best interest to heart. He gave us the time to ‘digest’ all the news and offered me the flexibility of being able to be scheduled in for brain surgery when I was ready. There was no timeline or feeling of needing to rush to a decision – he has so much respect and treats each patient individually.

Post-Surgery Dr Liu
Day after surgery being checked on by my neurosurgeon, Dr. Liu – 22nd June 2016

When Dr. Liu visited me the morning after my surgery, he noticed and said my eyes had a sense of ‘clarity’ and ‘sparkle’ that he didn’t see before. He then asked me if there were any improvements he could do next time to better the patients’ experience – this really does matters to him. It showed me how much passion and integrity he has for his patients and field he is in. No wonder he has patients from all over the world travelling to UVA to be treated by him and recently was named one of the best doctors in America!

I was discharged from hospital on Thursday 23rd June and we made the 3 hour drive back to D.C. without any run ins with tornadoes this time around!

Now being four days after the surgery, I can say that I have further improvements with my neurological symptoms. My sensitivity to light and noise has decreased significantly, nausea is barely there, my reading and comprehension I can already feel is clearer (as I don’t need to keep re-reading sentences over and over again), the ‘brain freeze’ headache (expected after surgery for a few days) and chronic headache (experienced for years) has now disappeared, brain fog has virtually gone, slurring of speech has become more articulated, vertigo whilst walking or standing has reduced, better concentration, and decreased intensity of tinnitus. I am still finding some difficulty with short term memory and my vision, but overall I can already feel the effects the stents have had contributing to such life-changing improvements and bringing me out of this dark-hole of misery!

It honestly feels like someone has hit the ‘restart’ button on me. I haven’t felt like this in forever! This has been the ‘icing on the cake’ with a total of four neurosurgeries, lumbar puncture, extensive blood tests and a crazy amount of CT/MRI scans since January 2016.

The future for me is unknown at this point in time. I will have to be monitored by having angiograms and scans of my brain to see if the stents continue to do their job. I am honoured to be one of Dr. Liu’s patients and especially being a part of pioneering neurosurgery to hopefully help other EDS sufferers have a brighter future ahead of them. Experiencing relief from these neurological symptoms is a miracle!

Even though there is no cure to EDS, I am forever grateful for the devoted EDS specialist doctors and surgeons who can provide solutions to chronic neurological symptoms to help lead a better quality of life.

Thank you to Dr. Liu, his team and UVA nurses for bringing back the sparkle into my eyes that I had lost, the smile that I thought would never return, and the quality of life I thought could not be saved. I am now cautiously optimistic for the days, weeks, months and years ahead of me.