YouCaring Fundraiser

My Mom and I went back east at the end of August and came back with the understanding that I need to have my upper neck fused and ASAP. We got a lot of important info and now I just need to come up with the finances to afford these life saving surgeries. I will need three surgeries, each that will need a $10,000 deposit, and is not covered by insurance. Every operation is critical to gaining back independance in my life, but also to prevent further damage, strokes and paralysis. These operation should be done as close together as possible based on the advancement of the symptoms I'm having for each individual issue. I have no way to cover the costs of the deposit let alone the travel, room and board costs for these several trips back east. Please if you can pass along my fundraiser page and donate If you can I would be forever grateful. You could help to save my life truly. 

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! 

FabriFoam and Helpful Tools for EDSers (prices and links)

I've been working on this post for quite awhile now and wanted to get it out months ago, I'm always trying to perfect everything I do before it goes live, but I really wanted to get this info out to all who could be benefiting from these very helpful products sooner. A lot has been happening and I have only just been able to work on a computer for a tiny bit again very recently due and briefly. So while this isn't entirely complete, I want to get this to you all now. Below is a breakdown of the tools I've been using over the last few years which have made a big difference to me, my stabilty and my quality of life.

I finally found the right way to wrap up my arms and knees to keep the movements and rotation to a minimum without turning red or going numb from poor fitting basic velcro braces. Thanks too FABRIFOAM! I couldn’t even use the phone without this stuff (and the EDS silver ring splints) I’m so glad my PT introduced me to this product last year! I knew I would need to have more once I realized it worked so well especially as an alternative to KT tape, Velcro Braces and Ace Bandages, that either caused MCAS reactions or didn’t do the job to hold me in place at all.

Side note on Subluxing: Subluxations are so weird they are not what braces are meant to protect against but yet are extremely painful and inconvenient and mostly untreated and unacknowledged by medical professionals since they don't appear on imaging.. A typical brace keeps your knee or thumb from completely dislocating or moving out by a lot, but a little bit of movement (with every movement) is awful and debilitating and that's how I sublux and constaintly! So these straps help to close the gap that braces leave open for movement. Fabrifoam gives me more control over the amount of movement possible and direction of movement. It allows me to use my arms and legs to do the most basic of things that without them I would be a complete invalid most of the time. 

FabriFoam has stretch but still is strong for support. Like a fabric exoskeleton that’s malleable. They are reusable but when you live in them they do wear out eventually. They dry if water gets on them, but its does change it and wear it out quicker if not dried out well and properly lain flat.  This stuff forms precisely to your body like tape but is adhesive free and they are pretty comfortable when they are on right and holding you together. I even sleep in them.  I dread showering or swimming cause when I unstrap I fall apart right away and then I have to wait till the oils and topicals dry to restrap and meanwhile showering messes me up bad from all the movement and hot water. But these straps saved my life, I swear! 

FabriFoam, The Different Colors & Straps

Tan - Pro Wrap. Strongest one of the three colors/ products. 3”x5 yards $38.50  I get this one and use it for my knees and upper arm. Sometime I cut it in half  for 1.5″ thick straps as well as 3″ straps and since it’s the cheaper price. But when cut they fall apart faster too. These large rolls come with a bunch of Velcro tabs to make as many straps as you can/need.

Tan- Pro Wrap Patella Strap  (2 pack) 18″ x 1.5″ that is a great size and Strong perfect for “runners knee” or strapping down the Fibula.  I use this on my wrists and knees all the time it has a Velcro tab attached at one end of each, so you can always use it and not have to search for a tabby.

Blue - Nu Stim Wrap also now comes in black I believe and next strongest (3 pack) 2.5” x 18” for $15.50. It’s great for things that need a little more give and the width. I like it for my knees and forearms/elbows to keep the twisting down 

White - Super Wrap. Stretchiest and thinnest. (1) 3” x 10’ for $12.00

Comes in a really long roll with 1 attached Velcro tab at the end. I also cut this one up into diffrent sizes and widths. Use it for thumb and wrist bracing as well as to prevent elbow hyperextention and humorous twisting.

All these items come in multiple lengths and widths for each stretch there are even specific thumb and ankle ones too but everything else is more expensive these where the cheapest options and the best value for what i needed based off the two straps I got from my PT for my elbows. I’ve been really happy with them. I did buy the thumb spica and loved it but reacted to the plastic corner piece for the thumb cut out.  The prices are the same on Fabrifoam.com and Amazon, My links above with each type and size are from amazon (not available for prime but yes to free shipping) FabriFoam Gear and other unique straps also available through Patterson medical or check with your PT office too.

Update: I have ordered through the company directly and because it was a large order I emailed to request a discount and recived one. Never forget to let companies know what your going through to get a little extra help. Use what you got and in this case it really helped me to be able to afford these much needed straps.

Video Request on how I wrap my knees, Sorry for my state of near undress. 
https://youtu.be/EPU-Bk1ktSY 

Other Helpful Tools I've Found

Blue Gel Yoga Toes 

Toe Stretchers are wonderful for Toe pain and Problems, keeps them from curling up, subluxing and releases pain from hyperextending toe joints. 

Massager Canes are a good tool for ribs and hips that need some help getting back into place. I have a body buddy but TheraCane Im told works even better




Cylidrical Foam  I got my current Red foam from my OT and PT and use them always on my utensils and reach flosser. (I also got a brown one for pencils but it's too stiff and too narrow for me. Cylindrical Foam is helpful in building up utensils so I could hold them easier without as much pain and discomfort. Each long tube when purcahsed can be cut into whatever size you need to  make two to three depending on how long or small you need them.  I use them everytime I eat and I need more! I've found them available online at:
Walmart  $13.25 seems to have the red one like I am used to  (2 of each red, blue and brown )
Patterson Medical & Amazon two different sized Blues
Elder Living They have 6 pk's for $16 and of browns and blues they have the red, blue and brown assortments pack also available.

Platypus Big Zip LP Reservoir

Hands Free hydration  This water bottle saves me from reaching, spilling or exerting my neck and having to keep refilling my water. This is the Platapus Zip 3L water Resevoir. I also have a 1 Liter too and I've begun using this one more especially for on the go in the car and travel. I love that I can see how many Liters I've had so far and that it's got a straw attached. Best water bottle for a spoonie, especially one with neck instability and hand/arm problems. Gravity does all the work.

Reachers

Folding Helping Hand Long-Reach Pick-Up Gripper - Light Weight Aluminum Body $5.69

Wooden Reacher (i put zebra tape over mine to make it nice and a little cheerier.

Economy Reacher Dressing Stick $9.91

Super Big Fat Pens for Arthritis and Hand Pain (5 pack)

$ 9.99

EDS Ring Splinting

EDS Ring Splints LLC  These are the silver ring splints that I currently wear.Many EDSers who can afford it or need more then DIP and PIPs should look into the Silver Ring Splint Company. (very expensive)

Oval 8's best price online (medco-athletics.com) graduated 3 and 5 packs for $30

Ezy Dose Cut and Crush Pill Splitter and Crusher

Good Grinder, Cutter, Storage and Cup. All-In-one. (I have three)

Best Neck Pillow and other Pillows

J-Pillow: I have four three blue ones and now they come in other colors and prints. I got a Zebra one. I use them for my neck and my arm, in bed, in the car and especially when I travel,  They are so soft, and perfectly shaped.  the new ones are bigger and plusher and I would not survive without this amazing british invention. Really helps with my neck and head instability.

J Pillow, Travel Pillow - Winner of British Invention of the Year 2013 - consistently the #1 Best Selling Travel Pillow on Amazon.co.uk

Knee Pillow given to me by my PT for knocked knees and hip abduction in chair/ for cars and bed too. Very Helpful. Knee pillows are helpful in general. This is Memory Foam.

Milliard Contour Memory Foam Leg and Knee Pillow with Ultra Soft Velour Removable Cover 

Bone Neck Pillows
I use these for my neck but mostly i use them to support my arms in bed, the wheelchair and in transport.

NeckBone Chiropractic Pillow by Original Bones, Brown

Car Neck Pillow (Soft Version) - Neck Pillow; Car Pillow; Memory Foam Neck Pillow; Neck Rest Pillow; Car Neck Pillow (Color: Dark Blue)

Another Neck pillow i use to support my arm. Is Memory Foam and has a strap to attach to a headrest in a car. 

Maternity Body Pillow I have two, and keep them rotating, they help me to sleep (I sleep on a chaise recliner cause I cannot lie flat due to my tetherd cord syndrome) the pillow keeps my hips closer and prevents me turning on them or my shoulder in the night and gives support and soft compression. Not just for MaMa's to be!

Tools for Cervical Instability

Aspen Vista Cervicle Collar   I wore this two weeks straight and then as often as needed or I could wear it, especially in night and in the car/wheelchair. if you try it and it helps your neck pain you have cervical instability that should be looked into especially those with Ehlers-Danlos Syndrome who have had any kind of trauma or whip lash, job looking down a lot, in conjuction with lots of neck pain. Holding up your head difficulties.

I use a scarf between the collar and my skin cause I do react to the foam. You can also see how I use the J-Pillow in this photo.

Traction Device

Neckpro Over-the-Door Cervical Traction - Adjustable Door Bracket - Neck Traction

Portable Traction Inflatable Pillow 

This is kinda like a travel traction device. Also helpful for when I cannot tolerate the collar but when the pillows alone aren't enough support. Like an air collar. If this helps your neck pain also another indicator you should be evaluated for cervical instabilities. Pump/ Squeegee removable.

Air Pillow  Traction device

Shoulder Instability

1st day I got my Bledsoe Knee Braces
& Bregg Abduction Pillow.

I've mentioned the pillows I use above to help support my severe shoulder Instability. I researched an arm support that I eventually got through my doctors and Insurance. It's called a Shoulder Abduction Pillow and it's inflatable and straps around me. I use it in a very modified way but it is a life saver for me.

Bregg Shoulder Abduction Pillow

I received this brace in March 2014 and I removed the strap that goes over the shoulder and i do not use the arm cuffs. I also use pillows ontop of the air pillow but this helps keep my shoulder from dropping out due to gravity pulling on my extremely lax ligaments.

Headset, Aspen Vista,
& Zebra J Pillow.

Bluetooth or Headsets can be found pretty much anywhere to adapt to your home or cell device. I found mine in a bunch of stuff my dad had so I don't have links for you here. But this is extremly helpful for my neck and my arm/hands. I can actually make and recieve calls without further injury to either of these things or my hand going numb!

I hope some of these links and tools can be helpful to some of you! I wanted to have this list available to anyone else who may be suffering like me and just may not even know about these products.

I will continue to update and post new tools that help me so be sure to check back. And if you have any tools that help you that you would like me to mention or try please comment below or email me at talledschick@gmail.com. I am always looking for more great and helpful tools.