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. From all of the trauma/surgerie, stress and medication that Jenna has been through, she developed a stress Ulcer and has inflammation in her stomach, which was contributing to her hemaglobin levels dropping.We never expected to be here again, asking for help. Jenna has been experiencing A LOT of pain. They performed a second surgery to close the open incision on her left leg (Phase 2, closing of Fasciotomy) which has been connected to a vacuum pump to promote healing. She has endured many tests and ontop of everything else, they noticed a drop in her hemoglobin levels which forced her to get another 2 more blood transfusions. It has been 20 days and Jenna is still in the hospital. ![]() and left Jenna intubated as they monitored her vitals in the ICU/PCU. This scheduled surgery lasted over 13 hours in the O.R. They had to perform another emergency surgery (fasiotomy) to help control the swelling on her left leg. The lack of blood flow, then the rush of blood flow severly compromised her leg where it began to swell massively. During this whole time, Jenna was bleeding out and needed two blood transfusion. ![]() To make matters worse they had to put in two stents to keep her arteries open. They had to preform an emergency surgery to remove the clot. They tried to remove the bloodclot but it was unsuccessful. Jenna started to loose a lot of blood, upon fixing the artery a blood clot started to form where the injury took place. During the surgery, there was a complication where the majory artery that goes down Jenna's left leg was injured. My dear friend Jenna Spencer Custodio Went in for Ovarian Cyst Removal Surgery on for a scheduled (Planned) surgery which was suppose to take no more then 2-3 hours.
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