Apologies to you all for not posting an update this last month. It has been a pretty hectic time for me and I have been unwell for several weeks. I am finally feeling a little more myself again and have some news to catch you up on!

So, back on the 20th May I was admitted into a surgical centre as an outpatient for a lumbar puncture and blood patch. The procedure took just under an hour and I have to admit that it was an extremely uncomfortable and painful experience for me.

I was awake during the lumbar puncture and they injected local anaesthesia between my L4-L5 and sedated me. Unfortunately, the local anaesthesia and sedation didn’t really work. The difficulty with EDS is that local anaesthesia does not work on us. This is a nightmare as in my past before being diagnosed with EDS, I suffered from the excruciating pain of having teeth extracted by my dentist to moles being removed by my dermatologist – the most frustrating part about this was I would tell them that I could still feel the pain and prodding and they would say, “Don’t be ridiculous, that is impossible!” So over the years I have built up quite a high tolerance to pain.

LumbarPuncture20thMay
Being prepped for my lumbar puncture – 20th May 2016

Anyways, my CSF (Cerebral Spinal Fluid) pressure was measured during the procedure and it was way above the norm at 19 instead of 12. Due to this, 20cc of CSF was extracted to attempt to temporarily lower my CSF pressure. Too high a level of CSF can lead to neurological complications such as blindness, so it is very important that I seek treatment and we find out what is causing the pressure to be high.

For the blood patch, it took over five attempts to try and draw 20cc of blood from my hand – being a pro at having my blood drawn from extensive tests in the past, I recommended them to try from the inside of my elbow as I know for a fact that my vein there is the best at pumping! And hallelujah, it worked! This was then re-injected into the lumbar puncture site to help the healing process and prevent any CSF leaks.

If anyone else has had a lumbar puncture, you know the drill of having to stay lying flat for at least 24hrs after the procedure to prevent CSF leaks.

Well, I had a very different experience to this. Unfortunately, I suffered from terrible spinal headaches (CSF leakage from puncture site which causes your brain to be starved of the much needed CSF fluid) every time I needed to be wheeled to the bathroom. Everytime I went from a lying position to a sitting position it felt like my head was going to blow – this is not an exaggeration as my mum witnessed me awfully crying and clasping at my head for hours on end until the spinal headaches dissipated. I was bed bound for over 3 weeks and had to eat lying flat! My PoTS and Autonomic Dysfunction flared up during this time: my body temperature and blood pressure varied hugely from 94-99.9degF and 100/50-138/88 within hours. This was not pleasent at all and caused me to be constantly interchanging from having chills, sweating and racing heartbeat.

However, some good came from this experience. The two days straight after my lumbar puncture I experienced for the first time in over a year: clarity in my thinking, visual memory recall, improved short term memory, improved speech and little slurring of words, my chronic headache had reduced significantly from a 9/10 to a 5/10 pain, and my vision was not as blotchy. This was because my CSF pressure was lower. But, after these two glorious days these symptoms returned.

After three weeks of being bed bound, I had declined significantly with my strength and recovery from my 3 neurosurgeries. I was back being wheeled around in my wheelchair. I felt very deflated and wanted to give up. Before my lumbar puncture I was making significant progress with my walking and balance using a medical walker – so I was back at square one again. But thank goodness for my specialist EDS physiotherapist! My faith and belief in myself was restored at my first session back where he helped me stand up and take my first steps again. It felt as though I was a toddler in a 23-year-old body. My thought process telling myself to, “move leg forward, bend knee, balance, don’t trip, look up to where you are going,” was cyclical and my concentration was so intense to just walk it was exhausting!

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Since my diagnosis of CVST brain clot at the end of April, I have been eagerly waiting to see this renowned EDS brain clot specialist for over two months. This past week, my mother and I drove 3 hours south to Charlottesville (Virginia) to finally have this long awaited consultation.

Journey to Virginia
Road trip to Virginia in my neck and back brace – 15th June 2016

The updated diagnosis is:

  • IIH/Intercranial vascular stenosis – a main cause and contributor to my high CSF pressure.
  • Left Transverse Sinus Vein is in a state far beyond repair. Sadly, 1 of the 3 major veins in my brain has collapsed in on itself and is not allowing any blood flow or drainage to my Left Jugular Vein.
  • Sagittal Sinus Vein (Central Vein in the brain) & my Right Transverse Sinus Vein BOTH have many blockages/narrowing vessels/clots. This can become very dangerous as I only have 1 vein (Right Transverse Sinus Vein) which is allowing blood to drain from my brain to my Right Jugular Vein. If this is not fixed soon by stents surgery, my brain will become very sick and life-threatening as the blood from my brain will have no where to drain and I would be at high risk to suffer a major stroke.
  • CT Angiogram is scheduled in the early morning of Tuesday 21st June 2016. A tube with a mini-camera will be inserted into my arterial vein above my groin and we will see where exactly the blockages/clots are in my brain.
Dr Liu CTA Scans
CTA scan showing titanium plates & rods from Neurosurgeries 1 & 3

Receiving this news has been extremely difficult, but I am thankful that there is a treatable solution via surgery. I have been told that a lot patients after the surgery within 24 hours will experience a huge improvement with their neurological symptoms. The stents will open up my veins so blood flow can be restored and then hopefully lower my CSF pressure. However, with some EDS patients who have this procedure it does not lower the CSF pressure. So there may be the possibility of me needing to have a shunt inserted into my lumbar spine to drain CSF when the pressure is high. I am hoping that with the insertion of these new stents in my brain (meshed titanium material tubes that are flexible) will make my following neurological symptoms diminish:

  • Peripheral vision loss, central suppression, eyes not moving together
  • Brain fog
  • Difficulty with thoughts and thinking of words
  • Comprehension and difficulty with reading
  • Chronic headaches
  • Slurring of speech
  • Numbness in both legs, feet, arms, hands and face
  • Spatial awareness, balance and walking difficulty
  • Nerve damages
  • Swallowing difficulty & choking
  • Tinnitus
  • Weakness in left arm and hand
  • Dragging/tripping of left foot
  • Nausea
  • Short term memory loss
  • Concentration loss
  • Sensitivity to light and sounds
  • Body spasms
IMG_3144 (1)
CTA scan showing vessels in my brain

After this consultation, my mother and I started the 3 hour journey back to Washington D.C. – or so we thought! Having driven 1 hour north of Charlottesville and taking the coastal route home, we embarked upon the craziest 9 hours of driving in our lives!

Leaving Charlottesville, it was beautifully sunny and 34degC, but not for long. I then received a text message from the U.S. Weather Authority warning us to seek shelter as we were in an zone where a TORNADO was going to hit in 10 minutes. At first I disregarded the message as I thought tornadoes only occurred in Kansas like the Wizard of Oz. But, finally my A-Level Geography skills studying different types of cloud and watching endless amounts of tornado videos became extremely useful. I looked up above the tree line ahead of us (approximately 2 miles NW of us) and couldn’t believe what saw – a funnel shaped dark ominous clouds in the sky.

Still disbelieving what I was seeing, I googled tornado warnings in Fredricksburgh and to my surprise, there was a tornado that had touched down and was spotted. Yup, I was looking at a real life tornado. I told my mother calmly that we would need to slightly divert our route back home by turning around and heading south right where we came from. She looked at me crazily, asked me “why?”, and I told her to look outside her window. She too realised we were in the path of a tornado. So we turned the car around, put down the pedal and just drove as fast as we could South. I wish I’d taken a picture of it, but instead I was too busy trying to navigate my mum and figure out a different route back to D.C.

There were tornado warnings throughout ‘The Plains’ of Virgina, so we had no choice but to drive SW for 3 hours and then drive up through the stunning Shenandoah National Park to avoid the storm. We have never been in such treacherous driving conditions. The tornadoes had already passed through, so we were battling with fallen trees and power lines, flooding, torrential rain and lightning. For a solid 6 hours and driving back on the famous Route 66 we drove 25mph on the highway as the torrential rain and flooding on the roads were so bad we could hardly see the cars in front of us and cars were flooding out other peoples car engines when driving past.

Finally we arrived back safely in D.C. after a supposed 3 hour drive that turned into an almost 9 hours! I have to say that this memory will not be lost but forever remembered after ticking off two things on my bucket list of life: to see Shenandoah National Park and a tornado! Thank you Virginia!

Thank you all for your continued support, love, prayers and fundraising efforts.