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!!!

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!