NEW UPDATE SURGERIES: CT ANGIOGRAM & #5 BRAIN SURGERY APRIL 2017
#CareForLaura | www.mindbodyeds.me
Laura Sylvester, 24 and studying for a Masters in Petroleum Geoscience at Imperial College London sponsored by PESGB, is in urgent need in medical crowdfunding a total of £300,000. She has currently fundraised just over £209,000 on her ‘YouCaring’ site since December 2015 and is in critical need of your help and support to fund £100,000 for her upcoming CT Angiogram, possible 5th neurosurgery and other medical treatment in the U.S.A in April 2017. Since January 2016, she has gone through a total of 4 major neurosurgeries (three of which were life-saving) Washington D.C., U.S.A. Most recently, lifesaving brain surgery in June 2016 at the University of Virginia by a world-leading neurovascular surgeon which allowed her to go from being wheelchair bound to walking again.
After graduating from the University of Leeds with BSc (Hons) Geological Sciences in 2014 and about to begin her Master’s degree, Laura was diagnosed with a rare genetic disease called Ehlers Danlos Syndrome (EDS) along with many other co-morbidities one of them being PoTS (Postural Orthostatic Tachycardia Syndrome). EDS causes the connective tissue (collagen) throughout her body to be extremely stretchy and easily breakable - there is no cure and there are currently no specialist EDS neurosurgeons in the U.K. or Europe. Unfortunately, during her MSc Thesis Project, this degenerative muscular condition caused her to deteriorate quickly causing her neck and spine to become extremely unstable. Laura was diagnosed with severe Cervical Medullary Syndrome, Craniocervical and Atlantoaxial Instability (dislocation/subluxation of her skull to C2 vertebrae), Chiari Malformation (brain sinking through her skull), Syringomyelia (fluid in spinal cord destroying nerves), disruption of her spinal cord ligaments and compression on her brain stem. This became life-threatening whilst she was suffering from extreme pain and having to wear a neck brace to prevent any further damage. This forced her to take a “pause” her MSc degree at Imperial College London.
Between January and April 2016, Laura underwent 3 lifesaving complex neurosurgeries in Washington D.C. by one of the few Ehlers-Danlos Syndrome neurosurgeons in the world who has the surgical skills and expertise: (1) Craniocervical Fusion, Chiari Decompression & Re-alignment of her skull, 13th January 2016 (2) Tethered Cord Release and L1-L3 Fusion, 17th February 2016 (3) Anterior Corpectomy Discectomy and Fusion C5-C6, 12th April 2016.
At the end of April 2016, Laura was faced with another life-threatening diagnosis: Cerebral Venous Sinus Thrombosis – also known as CVST Brain Clot. This is a rare blood clot in the brain that affects only 5 in 1 million people per year. Sadly, 1 of her 3 major veins in her brain (Left Transverse Sinus Vein) had completely collapsed on top of the brain clot and was too dangerous to be fixed due to the high risk of a brain haemorrhage. This prevented blood to drain from Laura’s brain causing her to suffer from Intracranial Hypertension (high fluid pressures in the brain) and debilitating neurological symptoms making her wheelchair bound (loss of peripheral vision, pressure headaches, numbness in both arms and legs etc.). On 21st June 2016, Laura underwent her 4th lifesaving brain surgery at the University of Virginia where they inserted 3 stents into her brain to prevent further collapse of her other major veins. Laura was the 54th EDS patient in the world to undergo this pioneering neurosurgery and the longevity and risks are still unknown. Overall, the surgery was a success and for the first time in years allowed Laura to feel relief from chronic neurological symptoms, the greatest being having sensation restored to both legs and feet that has allowed her to re-learn to walk again which she thought would never be possible.
After 8 months of undergoing specialist medical treatment in the USA, Laura returned home with her mother Jayne in August 2016. Since returning to the UK, Laura has been committed to rehabilitation and recovery from all 4 neurosurgeries as well as devoting her time to being an EDS Patient Advocate approaching the department of health to implement change. Unfortunately, currently she is suffering from mini-strokes and pressure headaches concerning the specialists. Laura needs to fly back to the USA to undergo a specialised CT Angiogram at the University of Virginia on 11th April 2017 to investigate the causes of these symptoms. It is very likely that Laura will need further pioneering procedures including brain stent, lumbar puncture and lumbar shunt surgeries to reduce the high fluid pressure in her brain. If she does not have these surgeries, the high pressures will cause her to suffer permanent brain and neurological damages. Laura will also receive specialist EDS physiotherapy and vision therapy in Washington D.C. during her stay to help rehabilitate from her vision and brain damages she’s suffered from her previous neurosurgeries till the 22nd April 2017.
As you can understand, this has caused medical costs to raise considerably, hence Laura and her family are in desperate need to raise at least £100,000 for her upcoming procedures in April 2017.
Laura is still focussed and determined on finishing her MSc at Imperial College in autumn 2017 and MSc Thesis Project at Impact Oil & Gas Ltd to become an employed Petroleum Geoscientist. She also is focussed on pursuing her patient advocacy role being recently given the opportunity to be ‘Education Advisor’ for The Ehlers-Danlos Society (international) as well as an inspiration via her blog ‘Mind, Body & EDS’ to those who suffer from EDS to never give up!
SURGERY#4: BRAIN SURGERY APPEAL
| GOAL: £300,000 | Ehlers-Danlos Syndrome (EDS) & Postural Orthostatic Tachycardia Syndrome (PoTS) | Washington D.C., U.S.A. |
| #careforlaura| www.mindbodyeds.me|
I am in critical need of your help and support to fund for my medical treatment in the U.S.A. I have gone through 4 major neurosurgeries (3 of which were life-saving) since January in Washington D.C., U.S.A. Most recently on 21st June, lifesaving brain surgery at the University of Virginia by a world-leading EDS neurovascular surgeon.
After being sent for an emergency MRI scan at the end of April due to my neurological symptoms worsening, on the 22nd of April I was diagnosed with CVST(Cerebral Venous Left Sinus Thrombosis) which is a rare blood clot in the brain that only effects 5 in 1 million people per year.On 21st June, an angiogram was done to update the diagnoses:
- 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 venous veins in my brain has collapsed in on itself and is not allowing any blood flow or drainage to my Left Jugular Vein. This is thought to be caused by the following (i) CVST blood clotcut off blood supply to this vein and it collapsed over time (ii) I was born with a small vein and it collapsed over time.
- Superior Sagittal Sinus Vein (central vein in the brain), Right Transverse Sinus Vein and Right Sigmoid Sinus Vein ALL have many blockages/narrowing.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 was not fixed by stents surgery, my brain would keep becoming very sick and life-threatening as the blood from my brain would have no where to drain and I would be at high risk to suffer a major stroke.
I was recommended that it was very necessary
for me to undergo stent surgery
to prevent further decline and risk to my neurological symptoms and brain. Surgery was scheduled for Tuesday 21st June 2016 at 6pm
. I am relieved to announce that this surgery was a success
and 3 stents
were inserted into my brain. There have only been 50 cases
of this specific surgical procedure done on EDS patients beginning 1 year ago.
So this pioneering treatment is a risk as the longevity of the stents are unknown.
Before my consultation in Virginia, to prevent further risks of clots/blockages in my brain, I was receiving two anticoagulant injections daily since April.
Not only was this extremely expensive and painful, but would
not guarantee that the clot would dissolve and disappear. Now I am needing to take a combination of medications to keep my blood thin for the rest of my life to prevent any risk of further brain clots.Here is a list of numerous neurological symptoms that I suffered terribly from before brain surgery
: double vision, blurred vision, pupil dilation problems, peripheral vision loss, weakness to left side of my leg and arm, numbness to both of my legs and feet, numbness/pins and needles in my left and right arm and hands, hyperreflexia, unawareness of positioning of my feet and fingers, numbness around my cheeks and base of my skull, strong unbearable persistent headaches, depth and spatial perception difficulties etc. whilst still dealing with recovery pain from my previous three neurosurgeries.
I can say that after my brain surgery, the majority
of my symptoms have significantly reduced
already which is a miracle!
During the week of the 13th June 2016, for the first time in six months I walked without any assistance:
neck brace, back brace, medical walker and wheelchair that I was before using on a daily basis.
Currently, I am still needing to attend specialist EDS physiotherapyand vision therapysession to help recover from my 4 neurosurgeries. This is so that I can try to fix my peripheral vision loss and central suppression, and sustain my muscle strength throughout my body so I am able to be 'fit to fly' home to England.
The medical plan:
- Lumbar Spinal Puncture surgical procedure on Friday 20th May - resulted in high CSF pressure.
- Angiogram procedure on Tuesday 21st June - revealed abnormally high Venous Pressure Gradients and confirmation of diagnoses.
- Neurovascular Stent Surgery on Tuesday 21st June- insertion of3 stents in my Superior Saggital Sinus, Right Transverse Sinus and Right Sigmoid Sinus Veins.
This life-changing treatment at the University of Virginia has caused medical related costs to rise,
hence I am in desperate need to raise my target goal to £300,000
. The goal target includes:
all the costs of the Brain Surgery and previous diagnosis procedures, all 3 lifesaving and critical neurosurgeries, lumbar puncture procedure costs, anaesthesia fees, hospital fees, medication costs, post-op rehabilitation and specialist EDS physiotherapy costs, temporary residence at a hotel in Maryland for pre-post surgeries and for family and friends to provide 24 hour care assistance as I cannot be alone during my medical treatment and rehabilitation.
Even though I have already endured so much, it has turned me into a relentless fighter who will not give up. While currently I may not understand why I am having to go through these life challenges, I am not ready to stop my belief and determination to keep on living, and hopefully inspiring others to be strong no matter what life throws at you. Thank you all for your incredible support and love so far, and especially to my guardian angel watching over me. Please consider donating so you can help contribute to saving my life and receive the urgent specialist medical treatment needed for my recent Brain Surgery and rehabilitation costs for my previous neurosurgeries. Also, please spread and share my story to your family, friends, colleagues etc. so you can also help spread awareness of my rare genetic disease, Ehlers-Danlos Syndrome (EDS), and Postural Orthostatic Tachycardia Syndrome (PoTS).
I am still focussed and determined on finishing my MSc at Imperial College and MSc Thesis Project to become an employed Petroleum Geoscientist as well as an inspiration to those who suffer from EDS and PoTS to never give up! Once I have recovered and back to good health, I will be able to fly home hopefully in August with my mother who has been caring for me in the U.S.A. since January, and finally be reunited with my family and friends in England. Thank you, All my love, Laura Lee x.
--------------------------------------------------------------------------------------------------------------------------------------------------SURGERY#3 FUNDRAISING APPEAL | #careforlaura | www.mindbodyeds.me
Since recovering from my second surgery for Tethered Spinal Cord Syndrome done on 17th February by specialist EDS neurosurgeon in Washington DC, I have been undergoing further specialist clinical tests and MRI's for my lower neck. I have been losing sensory function of my left arm throughout this past year and the specialist Upright MRI equipment they have here in the USA has finally revealed that I will unfortunately be needing a 3rd neurosurgery on Tuesday 12th of April 2016 in Washington DC by the same specialist EDS neurosurgeon.
I have a herniated degenerative disc between C5/C6 vertebrae which has slipped under my neck ligament, impinging on my spinal cord and nerves, and causing me significant pain in my neck and loss of sensory function in my left arm. The surgeon said he had only seen one case of this type of herniated disc throughout his career due to the way it is positioned, so it won't be a very straightforward surgery. My disc will be removed and replaced by a donor bone and my vertebrae will then be fused together with bone graft, my bone marrow and titanium plates and rods to provide stability. This in combination with my first neurosurgery will restrict my neck mobility.
In order for me to proceed with this specialist 3rd neurosurgery AND have funds to provide specialist EDS physiotherapy treatment post-surgery, I NEED to raise at least £190,000. This includes ALL 3 neurosurgery expenses of hospital fees, surgeon fees, medication costs, specialist consultation fees and specialist EDS physiotherapy for post-surgery and for the rest of my life etc.
Although I am recovering well from my 2nd surgery, I am still experiencing sensory function loss of my lower limbs from the Tethered Spinal Cord Syndrome surgery and am re-learning how to walk properly by using a medical walker and wheelchair to get around. I have been told that with specialist EDS physiotherapy, I will hopefully regain my sensory function in my lower limbs and left arm within 6 months to 1 year post-surgery - this is if permanent nerve damage has not already been done. There is no guarantee that I will regain these sensory functions and this will not cure my Ehlers Danlos Syndrome or scoliosis of my spine, but at least I will finally be free of the extreme pain and not have any life-threatening injuries to my spinal cord once this 3rd neurosurgery is completed.
Since arriving in Washington DC, I have had some visits by family and friends who are helping to keep my spirits up and aid me with my recovery which has been amazing! Equally as amazing has been the phenomenal support by everyone else in the help in fundraising and sending messages of support to myself and my family.
We are enormously grateful and need everyone's help this last time to reach the £190,000 target so we can fund this final 3rd neurosurgery and I can finally be brought home to England, continue with my specialist physiotherapy rehabilitation, resume and finish my MSc Petroleum Geoscience degree at Imperial College, and continue on with my career aspirations and live life to the full!! PLEASE consider donating, thank you.
SURGERY#2 FUNDRAISING APPEAL | #careforlaura | www.mindbodyeds.me
Since announcing the success of my complex lifesaving craniocervical fusion neurosurgery on the 13th January in Washington D.C., I have been undergoing further clinical tests, X-rays and MRIs of my lumbar spine. The reason for this is that I have been experiencing differently-sourced neurological symptoms that have been increasing in severity but are not linked with my first surgery or neck injuries. Unfortunately, this requires imminent further lifesaving surgery in order to preserve my lower body motor and sensory functions. If left untreated, ultimately this will fundamentally threaten my quality of life. Should I experience a fall or trauma, there is a high risk that any part of my spinal cord could de-tether/disconnect which would cause permanent paralysis to my lower body.
I am therefore in URGENT NEED of a SECOND critical and equally costly lifesaving neurosurgery which is scheduled for Wednesday 17th February 2016 in Washington D.C. and will be carried out by the same neurosurgeon, Dr Fraser Henderson. The diagnoses given are that I have “Tethered Spinal Cord Syndrome” in my L1/L2 vertebrae and “Spina Bifida Occulta” of my S1 vertebra which means this bone was incompletely formed, resulting in an exposed and unprotected region of my spinal cord. Both diagnoses pose severe risks to the integrity of my spinal cord as it is being “over-stretched”, causing extreme neurological symptoms such as: weakness of lower limbs; numbness to my lumbar spine and lower limbs; burning sensation in palms of both hands; persistent headaches; a sensory neurogenic bladder dysfunction etc. Both diagnoses are related to my rare genetic disease, Ehlers Danlos Syndrome (EDS).
Consequently, I am reaching out to you all for a “Surgery #2” fundraising appeal which includes expenses for the surgery, hospital fees, medication, initial physiotherapy and hotel accommodation for the extended stay until April before I am allowed to return to the U.K.
My updated target goal is now £190,000. This total combines both “Surgery #1” and “Surgery #2” fundraising appeals for all expenses and additional necessary funds for my post-operative rehabilitation care back in the U.K. (physiotherapy, hydrotherapy, specialist consultations, medications etc.) for both my neck and now my lumbar spine that I will need for the rest of my life.
The surgery will include removing part of the back of L1 and L2 vertebrae bones in order to gain access to my spinal cord. They will then detach the filum terminale which is fibrous tissue connecting the bottom of my spinal cord with the coccyx vertebra and is causing an “anchoring” and “over-stretching” effect of my spinal cord. This should then “release” the stress on my spinal cord and prevent any further risk to my lower body motor and sensory functions thus allowing me to “get my life back”. The surgery will finish with L1 and L2 vertebrae fusion to create stability. I am keen to resume my MSc Petroleum Geoscience degree at Imperial College, London and live life to the full.
Again, the surgery is extremely high risk, but thankfully I will be in the gifted hands of the world’s best EDS specialist neurosurgeon, Dr Fraser Henderson. My family and I are extremely indebted to those who have donated thus far to what we believed would be the only surgery required (which I now refer to as my “Surgery #1” fundraising appeal).
Nonetheless, we now URGENTLY face another life-threatening hurdle. As time is of the essence and my lifesaving surgery is less than two weeks away, I am asking you to PLEASE CONSIDER DONATING to my “Surgery #2” fundraising appeal. I will be forever grateful for your support in helping me through this most difficult time of my life. Thank You!
SURGERY#1 FUNDRAISING APPEAL
On 7th August 2014, I was diagnosed with a rare genetic disease called Ehlers Danlos Syndrome (EDS) with PoTS (Postural Tachycardia Syndrome). EDS causes the connective tissue throughout my body to be extremely stretchy and easily breakable - there is no cure for it. Over time, my muscles in my neck have become very unstable, which has further led to dislocation/subluxation of my vertebrae, disruption of my spinal cord ligaments, and compression on my cerebellar tonsils and brain stem.
Suddenly my life was flipped upside down and this degenerative muscular condition caused me to deteriorate quickly, forcing me to postpone my Master’s degree at Imperial College, return home, and be cared for by my parents.
Once an extremely sporty, sociable, positive and driven young woman, I have become tremendously vulnerable. I am in extreme pain, I wear a neck brace all day, and I am at constant risk of further damaging my brain stem, that would consequently cause me to stop breathing.
I am in desperate need of specialised EDS neurosurgery which will be done on 13th January 2016 in Washington D.C., USA. There are few experts in the world who can do this. The total of the medical expenses, travel and recovery is very high. I hope and NEED to raise at least £75,000 ($110,000) to fund this.
The surgery will create stability in my neck and stop the compression on the brain stem and cerebellar tonsils, essentially saving my life. This will enable me to carry on living my life as a normal 23-year-old, hopefully mostly pain-free and without the worry of causing further damage, which could otherwise prove fatal.
Even though the surgery will offer me the stability that I need, unfortunately it comes at a cost of losing complete movement of my head and neck. Nevertheless, I am determined to adapt to this and begin fulfilling my dreams once again and resuming my Master's degree.
Any amount of donations and support for this specialist neurosurgery will be so tremendously appreciated, not only by myself, but also my family and friends. Please do consider contributing to the first major stepping stone that I need to live my life without fear.