Medical Excursion Back East Trip 2 Maryland and NY

It's been quite awhile since I’ve updated. Things over the last several months have been very hard and chaotic. But a lot is in the works. Ill update you on all this other home stuff later. But here is an update upon returning home from seeing Dr. Bolognese and Dr. Henderson back east at the end of August/early September.

I went back for a follow up with Dr. H and an initial appointment with Dr. B. both of which whom I discussed my tethered cord occulta and the need for that surgery to be done first due to my inability to wear my cervical collar like I have been told I need too because of the severe uptake in pain and pressure in my back and skull as well as other symptoms. They both agreed this should be done. Dr. Henderson did not care what order and Dr. B did say normally this should be done first. However Dr. Bolognese also said that due to how they manipulate the head during surgery this would without a doubt put more stress on my already severe neck instabilities and put me at greater risk for more neck trauma if I have not had the fusions first. This is very scary! I was hoping I could use prolotherapy in my neck to help strengthen the instability so I would be at less risk, however upon returning home I have been unable to find any doctor who will even touch that area due to the severe cranial nerve and vascular involvement I'm already experiencing. Although there is someone in Florida (caring medical) that claims they can do it, the trip out there to have my neck and other very unstable joints injected would costs nearly $6,000 for the first round, and again that's a whole trip across the county again, and I do not know if he would even be willing to inject my neck with the cranial involvement that's happening until I would be out there, I would love to try this, but I do not have the funds for this let alone my surgeries and I am at such a loss for what to do

At this point however I realize I will need to have a few operations and I would like the smallest number of times going under as possible. Both neurosurgeons had different plans and I was shocked at the drastic difference in how they do the operations and their plan for the same neck instabilities in my case. I learned a lot and I felt I had a lot to figure out but in reality I don't, I have one choice and that is surgery and ASAP for my atlanto axial instability (C1-C2 vertebrae) I feel like I’m between a rock and a hard place since before I went back east my Occult Tethered Cord Syndrome was at the forefront in my mind and having that Release Operation was my first surgical priority. However everything has changed since we learned how much more dangerous my neck rotation truly is and has been for well over a year, because my imaging was read incorrectly in Oregon. And this is because there are only a handful of doctors, surgeons and radiologists that understand EDS and these rare neck issues and how they tie into my Ehlers-Danlos Syndrome. 

To get technical. My neck is rotating to 44-45 degree's and at 43 degrees the flow to the vertebral arteries stops. To give you an idea of what a normal neck rotation should be it is 38 degrees, with 40 being abnormally high and I has been told I was only rotating to 40-42 degrees' making us think I had time but in reality all this last year and a half I've been crushing my arteries with every rotation of my neck and if it is turned for too long it would very likely cause a stroke! 

I've been waiting for Medicare to kick in upon approval at my disability hearing but my hearing was postponed in July till after I saw Dr. H again for a follow up, I was told we would reconvene as soon as I was back however my social security disability hearing was rescheduled for December 21st. Which is too late! None of my doctors feel I can wait this long and even if I do get approved (which I cannot count on) I will not be able to travel back east for my surgeries until close to May or June 2016 because I cannot wear any kind of coat or sleeve on my exposed shoulders due to the server nerve damage and trauma that's been caused to it from both my neck and shoulder instability. Winters are brutal for me and there is no way I can travel up north back east in the dead of winter in a tube top! This would mean nearly another year like this with my neck dangerously unstable and due to the stretching wearing the collar causes on my back, spinal cord, slippery discs and filum, I am continuing to worsen my Tethered Cord Syndrome which puts me at greater risk for a Brain Herniation called Chiari, I already have low lying tonsils.  The worst thing about having this longer wait though is that my neck really needs the support to keep me from further stretching and injuring my arteries and spinal cord with movement. Just upon returning home, I've been back in the cervical collar 24/7 even showering in it as more than a moment out of the collar and my whole face goes numb and even in the collar when I turn over in my chair I feel vertebrae slip and the other day I literally hit a nerve that went straight to my tongue! Plus when the vertebrae slips like this within minutes I begin having these mini stroke like episodes where I cannot speak or move. This is all gotten very dangerous and scary and rapidly. And with the nerve being injured so much and my lax ligaments due to the Ehlers-Danlos Syndrome I am at risk for a high spinal cord injury which could cause paralysis! My Doctors don't feel I can wait even 2 months let alone 4-6 months! With the degree of slippage I have in my cervical vertebrates and I need to have this C1-C2 Fusion Immediately.

So Since I cannot count or wait for Medicare any longer (I've been waiting over 2 years) I need to somehow come up with over $10,000 (for each surgery) as a deposit plus the travel, food and room expenses for my caregivers and I to spend at least two weeks out there for this first operation. 

To give you an Idea of what Dr. B told me in New York, He was telling me that not only does my C1-C2 need to be fused but so does my Skull (the numbers are confusing here but the threshold for that fusion is 130 degrees of slippage and I’m slipping 154 degrees, and this is why when I where my neck collar the tethered cord symptoms are so much worse, and In an ideal world he would fuse 0-C2 and within 2 weeks detethered my cord. So what he would actually want to do a fusion all at once from 0-C2 and out of pocket without Medicare this would cost me about $124,000, I need to be on Medicare! But I also cannot wait to have the most dangerous vertebrae’s fused which are C1 and C2 cause they are crushing arteries. 

If I was on Medicare I would have the choice of which expert in this field I want to do this surgery and I would prefer to go under as few times as possible, have the least amount of metal placed in my spine with the least invasive surgery, but the price out of pocket for Dr. B is astronomical, so my only hope is to raise enough to get the first fusion done with Dr. H while I wait for my disability hearing. Meanwhile if I do get Medicare in the new year, and I can wait this long then I can then go back and have the other two operations done with the less invasive surgeries I would prefer to have. But right now I really feel like I have no choice and I need to just get what I can try to afford done and $10,000 is more possible the $124,000, both fee's would need to be paid up front, and this still doesn't cover the hospital, hospital stay or anesthesiologists costs.

 I need to have this 1st fusion done and even if that means asking for some help, which I hate to do, I will. Cause this is my life and it is in grave danger! Not only is this surgery, life saving, but life altering and I will do anything I can to get my life back, at least to some degree. I used to be such an active community member and I miss being apart of the world again. I will never be able to work or have children, it would still be too much for my unstable joints but the idea of being able to use the computer and my phone again without so much pain and neuro symptoms and to do basic activities like showering and standing up without assistance would be incredible. I've missed so much in my friends and family's lives in the last few years and I'll never be able to get that time back, but hopefully I can be there for future, holidays, birthdays, weddings and more. As of the last year and particularly the last several months I am entirely housebound. Making the trip to see these experts put a great amount of stress on my body and neck and no wonder things have only declined quicker since I was gone.  I just want to be some version of a whole and more stable person again. If I could just be in a vehicle without putting my neck in such danger I would take that! I miss going to the grocery store that was my only salvation in leaving my home these last few years, other than drs appointments and now I cannot even do that. 

So I have created a fundraiser page to come up with the deposits for these surgeries and travel expenses. If you could please check it out and share the link and video I would so very much appreciate it. If you are able to donate, even $5 it all helps. Thank you.

www.youcaring.com/hillarygorson

I also now have a facebook page my mom and I will use to update more frequently is the hope;
www.facebook.com/hillarygorsonandEDS

As you can see things have gotten very scary since my return home as the neurological and vascular symptoms have had a huge increase and I can no longer be without the collar for any length of time, as compared to just a few weeks ago when I was only spending brief periods of time in the collar when absolutely necessary. Things are happening fast and if I can raise enough by the end of October, when my surgery is tentatively scheduled for then I have a real good chance at getting some semblance of my life back, at least a more stable neck!