Tethered Cord Release Surgery in 7 hours

Can't leave the house without these amazing masks
 from@threadncord created by @jennyslifewithspoons.

So it's happening and I wanna update now since I don't know what kind of shape I will be in tomorrow, this week or for the next month but I will do what I can to update as I can. But right now here's what is happening. I fucked up and before surgery your supposed to take an antibacterial shower the night before and morning of. well I react to soap so the shower was a bust I was itching myself raw!!! UGGGG I hate soap and wacky Mast Cells!! Also right before my shower i switched collars and hurt my neck in the 2 minutes between the transfer so now my face is half numb, im having electrical pain and stinging all up my back and my shoulder has been spazing pulling my elbow and collar bone out. NOT A GOOD WAY TO END THE DAY BEFORE MAJOR SPINE/SPINAL CORD SURGERY!!!! so now Im nervous as fuck!!!! especially about lying on my stomach im so worried about my neck and collar bone during the almost three hour surgery. But i know Dr. Henderson is the best so im not worried about surgery just the repercussions of being on my stomach that long and then on my back for so many days and being completely still which is hard when your body keeps slipping out.


Here is the plan though:
have the OTCR (occult tethered cord release)
spend three days flat in the hospital
spend two more days trying to start TO get up and walk as possible recover in hotel for at least a week or two
Follow up and get release to fly home and at appointment discuss the neck fusion and how soon can be done--

-Schedule Neck Fusion for C1/2 keep raising funds www.youcaring.com/hillarygorson (need another $10,689 for the deposit while we wait for approval on the hospital and anesthesiologist)
-fly home an recover.

Goals Over next three months
-Start walking around more (no more full on couch potato and less wheelchair use)
-Be able to lay down in a normal bed and sleep like a normal person not curled up in a ball all the time
-Get feeling back in legs and neither regions
-Have better lower body control (legs, bladder, bowel, etc)
-Hopefully lessen Dysatonomia POTS episodes and blood pooling/ dizzyy eyes greying out spells
-less back pain
-loosen up herniated T9/10 disc so it dosnt need to be surgically removed
-Lessen electrical stinging pain going up spine
-Reduce neurological symptoms thoughout system (eyes crossing, brain fog, TND symptoms, chiari symptoms, lower risk for Chiari, etc)

Hopefully my neck wont get too much looser but enough that I can wear my collar to support it until I can have prolotherapy and my fusions.

Fusion surgery should
Stablize neck so its not crushing attires and cranial nerves
reduce brain fog (better brain function)
stop neurological symptoms and neck stabbing pain and pulsating ( from rtiry compression)


The Tethered Cord Release Proceedure as Described to my friend who asked me about it today in the best way I can describe it.

Tomorrow im having this done at 11:55am EST, It's done a few different way but Dr. H goes in and takes out the vertebra that he goes in at either L5 or sometimes higher (usually a little higher then the sacral dimple/pronation) then goes down the spinal column/cord to the nerve root center. He then tests for the nerves and when he finds the filum which as I understand isn't supposed to be attached at the nerve root center he ties it off and cuts it then the cord which the filum is attached too gets released and he fuses the vertebra back in and tests for any other lumbar instability while he is down there in case more fusions are necessary. It take about over 2.5 hours if all goes according to plan. Then you spend three days completely flat to lower the risk of a CSF leak and then day three or for they uncath you get you on your feet and start walking as much as you can. Usually your released by day 4. This description is based of the stories of other patients.

When Mine is done I will share exactly what I experience. I know how another surgeon does it and that is Dr. Bolognese and it's a tad bit different instead of going in a L5 he goes in around L1/2 and instead of removing the disc he drills a tiny hole and goes in that way and patches it up with a graft. This I originally thought was because I wanted te least amount of Metal in my body since I have titanium in my leg that causes me trouble 9 years later, but since I feel so unstable and I spoke with a dear friend who had this surgery with Dr. H she said the lumbar fusiion made her feel so much more solid and I like that I think I need that the the biggest difference of all is as a self pay patient Dr. Henderson is about 8,000 for the OTCR and Dr. B is over $100,000 both needing to be paid up front. so the money since I am not on medicare is what it came down to, but they are both top in there field and I can't go wrong with either one. the Neck fusion has a bit more drastic difference which I will get into in another post later.

Right now wearing the neck brace is great for my neck but the cord is pulling so tight it kills my back so the TC release should allow me to wear the collar for Neck stability without causing more back pain/pulling/neuro symptoms, but is likely to make the neck looser which is what the Dr. B was saying is more dangerous but my friend had the neck fusion first o-c2 which Dr. B said I need and between the fusion and the OTCR she couldnt even sit up or take two steps on her own and i've heard this a lot so i dont want that, which is why while this puts my neck at greater risk me and my surgeon feel the TCR should be done first and that is what is happening tomorrow. I just hope we can get the neck fusion done really soon after so I don't continue to damage my cranial nerves and arteries.

okay my back is full of electricity so I need to stop now. but that's what is happening. I also have no clue what the elctricity is coming from a lot of people say it's the neck im kinda hoping it the OTC so that it wont happen after tomorrow.

Fingers crossed all goes well and no mishaps.

To the first of the fewest amount of surgeries as possible.. *Cheers*

Flight leaving SLC to DCA. On our way!!!

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.