Help Needed for An Unimaginably Difficult Situation

My name is Jaime Marie Revel. My story is not one that you would hear every day and is not one that I could explain in a short paragraph, but I will do my best to explain my situation in short. I have Ehlers Danlos Syndrome which is a genetic condition that effects the collagen (glue that holds a person together) throughout the body. My collagen is faulty. It effected my brain and spine a great deal. In 2014, I had surgery to detach my spinal cord at S1 (near tailbone) so that it could float freely as it is supposed to. Unfortunately, in 2017, despite best efforts, I re-tethered and had to have another surgery at L2 (upper end of low back). Alongside all of this, my spine was literally falling out of whack. I had to undergo fusion after fusion. Every time one section was stabilized, another would become very unstable. I ended up being fused with titanium from my skull to the top of my tailbone. I was then fused in my pelvis at both my SI joints. Tethered cord was then questioned again because I continued to have problems up and down my spine as though I was being pulled forward. Come to find out, my hardware was not supporting my spine enough. I then had to undergo extensive surgeries to repair this (as well as a broken back and hardware) from C6 (bottom of neck) all the way down and into my pelvis. This left me with a plate at my skull (one of two), 2-4 titanium rods from skull to pelvis, a big line up of screws and rods, 2 areas of bone in place of discs in my neck, 2 artificial discs in my lower back, the list goes on. Close to a year ago, I underwent my last back surgery and had hoped it to be my last. With extensive therapy, things had started to look up when I suddenly had an onset of new disturbing symptoms. I was then diagnosed with tethered cord syndrome again. Having had such an extensive amount of work done to my spine, not just anyone can help me. Many just are not willing to touch a spine where they have to go into an area fused with 4 titanium rods. Not all neurosurgeons are willing to perform tethered cord release to begin with. Another problem that comes into play is the fact that I have an LP shunt that enters my spinal canal right where I am tethered. Where this shunt is nonfunctional, it can be removed, and it is best that it is as it does not have a good seal and is prone to causing CSF leaks. The removal of a shunt has to be done by a doctor that can do shunt surgeries. I also have to have a doctor with plastic surgery training OR have a plastic surgeon available to help the neurosurgeon do a complex closure as EDS tends to make my incisions not hold. This neurosurgeon can do such enclosures. The bad news is that I live in Kentucky and this neurosurgeon (and EDS specialist) lives in Maryland. This means an out of state trip. I would have to travel there, rent a motel, have the surgery, spend 3 days in the hospital at minimal, and then stay local for 7 days, have a follup appointment and be cleared, all before returning home. I have insurance which will pay a big part of the hospital bill. The doctor though no longer accepts my insurance. While my husband and I will be able to fork up some of the money, we are still going to be $19,825 short which I have to have before surgery. My condition is progressing. Right now, 1/3 of my back has no feeling, I have sharp pain under my rib cage that occurs when I inhale, I have pain down both legs, the backs of my legs have no feeling, my feet go numb off and on, I have episodes of leg weakness that drops me to the floor, and I even have neurological issues that affect things like my bladder. My spinal cord is basically sustaining injury over and over again where it is attached and repetitively being pulled where it is attached. It is damaging all the nerves in my lower body. As much as it humiliates me to ask, I am requesting help as I cannot do this alone. Anyone willing to help, even if by a dollar, is greatly appreciated. I also welcome any and all prayers.