Jenny Can’t Be Left Like This

We never expected to be here again, asking for help.

The craniocervical fusion surgery and posterior fossa decompression surgery that Jenny had in January 2020 have had a devastating and dangerous outcome. She has been left even more severely disabled and in a relentless intense state of suffering, unable to move her neck and head because it isn’t safe.

What is wrong?

Jenny has Ehlers-Danlos Syndrome (EDS), which is a genetic disorder that causes her to produce faulty collagen. A lot of the human body is made up of collagen so it affects many systems. The biggest problem for Jenny is that the faulty collagen causes the ligaments and connective tissue in her neck to be lax, which means that it can’t support the spine. So the vertebrae and skull move around and subluxate (subluxation is like dislocation). This means that she has CCI (craniocervical instability) and AAI (atlanto-axial instability).

Jenny’s operation in January was meant to help support the skull and vertebrae below so that they didn’t move around anymore. Other people with M.E. have found that they have the same structural problems and when their instabilities were fixed with a fusion, they were also cured of their M.E. and their reduced blood flow (due to the structural problems), returned to normal when the structure was fixed, and so they instantly had their energy back. So not only was Jenny expecting to wake up from surgery with her life saved from having the structural problems fixed, she thought the severe M.E. would potentially be gone too. Neither of these things happened. In fact, her neck became more destabilised, not only at the fusion site but in additional places all the way down, and the M.E. got worse because the operation blocked the place where she was managing to get a bit more blood through to her head. We all have been devastated.

What we’ve found out is that, unfortunately, Jenny’s fusion didn’t involve intraoperative traction, which is necessary in some EDS patients to make the fusion effective and curative. Before the operation she should have been tested with invasive cranial traction, where bolts are attached to the skull and then the skull is lifted incrementally by a machine to determine the exact amount of traction that is needed in the fusion and to determine exactly where the skull needs to be placed in surgery. We did not know this before and this test was not done.

A brilliant EDS-experienced neurosurgeon in America, who knows what’s what, has proposed what needs to be done for Jenny now, though there are no guarantees. The “fix” that he proposes involves:

1. Removal of the hardware (the metal plate, rods and screws) from the surgery in January.

2. Use bolt traction testing to find the exact amount of intra-operative traction needed and the position to place the skull in.

3. Redo the craniocervical fusion, using his own technique (condylar screw fixation) and using the results of the traction testing to place Jenny’s skull and neck in the correct position with the right amount of traction.

Unfortunately the fusion in January has caused extra structural problems in the vertebrae beneath the fusion, as well as a suspected tethered cord, so the “fix” above might not solve all the additional problems. These things won’t be able to be determined until Jenny actually gets to the hospital in America and the neurosurgeon does all his various tests and figures out exactly what has happened in her neck and if/what other surgery is needed too. Obviously we need to have the money ready for these surgeries too, as well as raising money for the the three invasive surgeries involved in the “fix”. There would be a gap between the “fix” and any additional surgery that Jenny may need, so we also need to raise the money to stay in America for months, somewhere with a hospital bed for Jenny (and potentially nursing care, depending on what state she’s in after the surgeries), between the “fix” and whatever other surgery might be needed.

We also need to raise money for Medevac flights to and from America, as that is the only way that Jenny can be transported. It will be very risky for Jenny to be transported at all in her current condition. We also need to raise money for intense rehabilitation and physiotherapy that will be needed afterwards too.

American healthcare is notoriously expensive with lots of hidden costs. We have been given quotes for some of the procedures and other costs but we’ve been told that until Jenny gets there to hospital, we won’t know precisely what money we need to have available. The sum of money that we’re trying to raise involves our best guesses and estimates for the rest. What we don’t want to happen is to get to America and the neurosurgeon to recommend something that we can’t afford and just be stuck. The amount of money feels overwhelming. It is the only hope that Jenny has though. She is worth it.

Jenny recently had to go to the NHS, after we had to call 999 as she couldn’t breathe because a vertebra in her neck moved and almost completely obstructed her airway. She stayed five days in hospital and there was nothing the NHS could do for her. They don’t have the specialist knowledge, expertise or experience of this. There are only a handful of neurosurgeons in the whole world who have this specialism. None of whom are in the NHS or in this country.

Jenny is at death’s door and is trying so hard to stay alive. It feels impossible that she can survive a few more days or weeks like this, let alone the months it might take to raise the money. She is deteriorating constantly. She is in screaming agony 24/7 but is unable to scream. She cannot support her head or neck since the operation and has been horizontal with her head supported by a pillow ever since. She hasn’t been able to move off that pillow since the operation.

Ever since the operation, there are massive cracks, snaps and clunks from her neck and skull that are accompanied by a movement/subluxation in her vertebrae/skull and they are left in a new position and structure. Each crack is pulling her further in a particular direction.

Her skull is being pulled downwards and inwards so hard (this is either being caused by a tethered cord or not enough traction) and being jammed into other hard things in her neck, which is intensely painful and unsafe. Whenever she tries to pull her head up and out a little from where it has sunk, the skull just rolls and slides by itself, pinging back down with a force she can’t stop. There is probably severe cranial settling resulting from this vertical AAI.

Jenny can’t even move a millimetre anymore without a massive crack/subluxation/snap and accompanying movement, without vertebrae being pulled out of their correct position. She can’t move the rest of her body because that causes her head and neck to move or wobble, which causes more cracks and subluxation. She can’t have anyone (or herself) touch her neck or head because even the tiniest amount of pressure against it causes the vertebrae to move wrongly and go further inwards and the skull to sublux, popping inwards.

Due to her not being able to have anyone touch her and due to not being able to access the back of her head (because both are too dangerous), and due to not being able to lift her head or roll onto her side, she hasn’t been able to have her hair cut or washed since January 2020 so it has become matted and greasy with her scalp covered in a layer of gunge. It’s awful for her and we wish we could help her but we’re just left helpless. When she was in hospital, they weren’t able to wash it either. It’s hard to be a carer and not be able to meet her basic care needs because it would kill her.

We’ve had to cut her clothes off with scissors in order to change them because when she tries to take clothes off, it causes extreme damage and she had a very close call that meant it wasn’t safe to do it again. She can’t safely lift her shoulders, which you need to be able to do to change clothes, to get the clothes out from under you.

Jenny used to be able to raise her hospital bed up at an angle with her head and neck supported by the bed and sit like that for a few hours. Now, it’s extremely dangerous for her to raise the bed as the movement causes further damage and deterioration to her neck. It can cause catastrophic changes. Now, she has to try to raise the bed at an angle once every day for as long as it takes to try and get some food down her and then quickly go down again. It’s very unstable and her skull slides off her neck and her neck slides off her shoulders when she’s raised up; the pillow can’t seem to support her head or neck and her skull appears flattened from the piece of skull that was removed for the decompression surgery. Her skull just slips and slides and sinks down the pillow, jamming down on something it shouldn’t be and also cuts off air more. The neck pain is overwhelming (worse than immediately after surgery). Using the bedpan is dangerous too (even though she has to do it while fully lying down, sliding it under her by lifting her hips up; it still moves her head too much). She also now has frequent urinary incontinence since the operation.

It feels like an impossible amount of money to raise but, as Jenny has communicated to us, she’d rather try and fail than not try at all. She would rather die trying than just slowly die doing nothing.

In full transparency, the neurosurgeon has warned us that there are no guarantees of a successful outcome and that the outcome of good clinical results are less likely than it would be if it were her first surgery. But she can’t be left suffering this intensely. She can’t be left like this. Every second is unbearable; she can’t cope. We need to try to fix it. This is the only option left to us. We need a miracle to raise this kind of money. Any contribution, however small or large, we’d be eternally grateful for.

Please share the fundraising link far and wide with your contacts and on social media. Thank you so much, in advance.

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Jenny desperately wants to stay alive and regain an acceptable quality of life. 

This is what Jenny’s life was like before she became ill: 

This shows a fraction of what Jenny’s daily life is like now: 

About Jenny Rowbory:

Jenny Rowbory is 38 years old and very much wants to stay alive!

She has been severely ill and bed-bound for over 19 years after suddenly becoming ill in her first term at university. She’s been diagnosed with very severe, multi-systemic Myalgic Encephalomyelitis for most of this time but it wasn’t until 2015 that she was also diagnosed with EDS and it wasn’t until May 2017 that she began to get overt symptoms of instability of the cervical spine and atlas, with numbness, temporary paralysis, lymphatic fluid stagnation and severely impaired blood supply to her head, neck and later, the whole body. In October 2018 she was diagnosed with AAI (atlantoaxial instability) and CCI (craniocervical instability), which have continued to deteriorate. The reduced blood and lymph circulation to the whole body has continued to diminish as a result.

A bit more about Jenny:

Jenny is a poet. Her poetry collection ‘We Are The Winter People’ is raising money for the surgery too. It’s available as a paperback, audiobook and ebook here. 

Jenny is on twitter as @Stroopwaffle.

Jenny has a million dreams. The first one is to stay alive. 20th Century Fox have very kindly given permission for Jenny to use the song ‘A Million Dreams’ from The Greatest Showman in a lip sync video to share online to help build momentum for the fundraising campaign, for everyone to share. Bear in mind that the video was made in early 2020, when Jenny was still able to move her neck a tiny bit and her face wasn’t completely numb yet so she could pull facial expressions. It’s here: