![]() ![]() The sum of money that we’re trying to raise involves our best guesses and estimates for the rest. 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. We also need to raise money for intense rehabilitation and physiotherapy that will be needed afterwards too.Īmerican healthcare is notoriously expensive with lots of hidden costs. It will be very risky for Jenny to be transported at all in her current condition. We also need to raise money for Medevac flights to and from America, as that is the only way that Jenny can be transported. 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. 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”. 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. 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. 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. Use bolt traction testing to find the exact amount of intra-operative traction needed and the position to place the skull in.ģ. Removal of the hardware (the metal plate, rods and screws) from the surgery in January.Ģ. We did not know this before and this test was not done.Ī 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. 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. 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. got worse because the operation blocked the place where she was managing to get a bit more blood through to her head. 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. 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. 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. ![]() 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. Jenny’s operation in January was meant to help support the skull and vertebrae below so that they didn’t move around anymore. This means that she has CCI (craniocervical instability) and AAI (atlanto-axial instability). So the vertebrae and skull move around and subluxate (subluxation is like dislocation). 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. A lot of the human body is made up of collagen so it affects many systems. Jenny has Ehlers-Danlos Syndrome (EDS), which is a genetic disorder that causes her to produce faulty collagen. 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. The craniocervical fusion surgery and posterior fossa decompression surgery that Jenny had in January have had a devastating and dangerous outcome. We never expected to be here again, asking for help. ![]()
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