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! 

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.  

Food Lifestyle Journey; FODMAPs, Histamines, Healthy Diets and More

Over the last two years I've been on Modified GAPS friendly, Grain free, Sugar-free, High sodium, Allergy Free, Low Histamine diet regimen. Recently within the last 6 months also going, Low residue and low fodmap as well as keeping fairly low histamine. But with the aid of H1/H2 antagonists. 

What’s highlighted I can and do eat 
and what has a star is high in histamines
 to approach with caution.

It is an adjustment and yes it's restrictive but...

1) Take it slow and go one by one eliminating most reactive foods.

2) Once you're off it while you stay off it until you feel you are ready 

3) Slowly add back again and see what you react to the most. You can find out what are your higher trigger foods and you could be weary of those or have less of that in your diet.

4) Be Patient with yourself, it takes time to figure out what works best for you. And it is a continuing process.

You'll see if it works for you and if it does it will have all been worth it. 

I began my journey with GAPS and the healing your gut through diet over 2 years ago before my EDS diagnosis when I was just trying to figure out how to cure my food allergies. Suddenly I couldn't even drink water without horrible pain in my stomach, and I wasn't having it, also had no health insurance so I had to figure it out myself.   

I bought the GAPS book and had been studying it. I made many bone broth's and went grain and starchy vegetable free as well I was already all allergen free for year prior. My allergens are gluten, dairy, eggs, soy, pineapple, goat and Oyster. Also Benadryl, yes the allergy medication! I also knew that nightshades are triggers for me. And I recently learned root vegetables seem to cause a lot of gas, bloating and pain as well, but nothing like as bad as the GP related Slow Motility pain. I am so fortunate that I do not have the vomiting aspect of this condition just very severe nausea and pain. I Stayed on a modified gaps like diet adding in all the new things I learned over the years. Like the need for 8-10 grams of sodium a day and to pay attention to Histamine and FODMAP foods. 

I six months ago I went into a really bad flare (after going across the country and eating lots of "travel food" when I returned I could not tolerate soup or anything more than ginger hard candies for several months and I am now on a even more restricted diet like in the photo above. Low Residue, Low FODMAP, Semi Histamine, GP Friendly. Currently I've been able to reintroduce my soups again and I've noticed when well boiled, I've started to tolerate vegetables like zucchini, kale, green onion tops, carrots and celery again. Not eating the celery but for the flavor in the soup. I've been off most vegetables for a long while and unless it's been cooking in a crock pot over 6 hours on High (or 10 hours on low) it's going to hurt my stomach. (My dietician told me cooking with onion in a strainer bag allows the flavor but also keep the fructans out. which are the FODMAP triggers. I have yet to try this)

What I learned now is that the chicken skin d needs to be removed prior to cooking for me otherwise the soup is too fatty and I cannot get it down. But it’s been going really well with the organic chicken thighs. 1 in a small crock pot makes enough soup for the day with some leftovers occasionally. Approximately 24 oz, I can also now handle organic (beef and Bison) hotdogs and ground meats low in fat like bison and ground turkey. These are low fat and low residue examples of meats I can tolerate with little to no pain. It is really important if you're dealing with slow motility or gastroparesis like problems to stay low residue and low fat. But to keep in the healthy fats!  I personally don't have the vomiting aspect of GP but I have the severe nausea and severe pain.

Taking H1/H2 histamine inhibitors for Mast Cell Activation Syndrome has allowed me to introduce more higher histamine foods back into my diet including canned fish like, Wild Planet Tuna (found at COSTCO) and Sardines (High in Sodium for us POTSies and full of all kinds of healthy nutrients and fatty acids) I have even began experimenting more with some corn puff cereal and corn chips on occasion as well but do have a slight reaction. Grain free is the way to be. 

Eventually I plan to progress to reintroducing garlic to see how I react with just the one new addition to the soup. I’ve also been off all dried spices for the last year and I am now handling one peppercorn added to these soups. It’s a slow process and while it is restrictive. It’s been 100% worth it. If it helps you you'll know that it's helping you and that is the whole point!! To get some relief!! 

I haven’t cured anything but the pain is much more manageable. (Note: I also use iberogast and ginger extract supplements before meals but not every time anymore)

Keeping on broths all the time has been so important! The key for me is there are certain parts of animals that can cause reactions, almost all cuts of beef for me now unless it’s really processed like a hotdog. Unfortunately Trial and Error are all we have for this.  I stayed away from chicken for a year and then I had organic chicken broth made with chicken breasts and then the whole chicken carcass but now I'm only accepting chicken thighs and that working out really well like I said. 

In the FODMAP category I notice I react mostly to the fruits like apples and pears, sometimes with mango and watermelon, honey, beets, leeks, onions, beans, Any FODMAPS in excess really. Also dried fruits, (this could have something to do with the sulfates) I have been put on a partially liquid/ soft foods diet due to dysphagia and have been following gastroparesis friendly rules, which allow for ground meats and canned fish which are High Histamines (I had a harder time with prior to the H1/H2 Combo) I noticed many Low Fodmaps are GP Friendly but are not Low histamine so it can be a struggle at first to find what you can accept

My Tips and Personal "Rules"

• NO RAW WHOLE NUTS EVER. Not even one! (not allergic just  difficult to digest) 
• Homemade almond milk from one cup almonds for 1 quart of milk is good and Honeyville almond flour is also okay in small amounts. 
• Bananas cause bloating and do not curb hunger
• Avocados cause pain like bananas do. I stayed away from them or stick to 1/4-1/2 of one. 
• Spinach less than 1 cup steamed or MCAS triggers.. Must be well steamed. 
• STAY AWAY FROM all known allergens cause (they cause massive inflammation in me)
• No Fermented Products. I stay away from fermented and cultured foods; foods still too high in histamine or meals or days with too many histamines cause they build up and will trigger a MCAS attack.
• Onions are a problem but I can handle green onion tops as per the gastroparesis friendly diets
• Grain free has helped me a lot with most of my stomach problems. I have recently allowed rice protein based drinks into my diet and I must water those down and some corn based products like chips and cereal because this is so restrictive and they are FODMAP okay and I need the calories. But I do feel these cause some problems but are the least reactive of the grains.  

These TIPs have helped me to fight against the treacherous abdominal pain, bloating, gas, difficult bowel movements and general discomfort. Still fighting hunger and fullness while hungry it’s a continuing process.

I was low to no histamine diet for over year until I started the H1/H2 combo at the recommendation of Dr. Pradeep Chopra a very knowledgeable doctor on EDS/MCAS/POTS/GP Matters

I use liquid children's Aller-TEC which is Centrizine or Zyrtec and I take that with a RX ranitidine also known as Zantac 150 mg twice a day together. That’s the key otherwise it does not help! 

What it does help with is the headaches, stomach cramps, digestion problems, spontaneous sweating, itching and rash attacks. It's drastically decreased in these the last 4 months. Although make sure if you take the liquid zyrtec that it has SUCROSE not SUCRALOSE... the later is a poison and was destroying my system when I was accidentally taking it for 2 months

Once I got that figured out it has allowed me to eat higher histamine foods or rather smaller histamine foods throughout the day/week. Although I'm still struggling I am bringing back some foods and figuring it out with others but the most important thing that I can’t stress enough is soup soup soups!!!

For me GAPS Intro concept has always been what I go back to. Those broths and their healing powers. They're helpful and even my dietitian wanted me back on soups... I've been ordered on a partially soft food liquid diet. So this is really important. Bone Broths helping to heal the gut is proven to help alleviate multiple illnesses and systemic G.I. problems as well as much more. It always comes down to good gut flora. This can be quite difficult to manage.

RESOURCES I USED

The wonderful LOW FODMAP LOW REISUDE GP friendly chart that’s not marked up is available to print here: http://blog.katescarlata.com/wp-content/uploads/2013/05/GP-FODMAPs_2013_Final.pdf

I found the above chart on this blog post which was helpful to me when I was in the researching stage: http://blog.katescarlata.com/2013/06/20/gastroparesis-and-fodmaps/

Stanford Breakdown of What kind of Sugars is in certain FODMAP foods:

https://stanfordhealthcare.org/content/dam/SHC/for-patients-component/programs-services/clinical-nutrition-services/docs/pdf-lowfodmapdiet.pdf

Great FODMAP Breakdown of what sugars are in what foods: second page:

https://www.sportsdietitians.com.au/resources/upload/110518%20FODMAPS%20Fact%20Sheet_Public%20version.pdf

Low Residue/High Fiber Handout:

http://www.mc.vanderbilt.edu/documents/digestivedisease/files/High_Fiber_Handout.pdf

GAPS: What can I eat Accepted and Not Accepted Handout:

http://files.meetup.com/2823572/GAPS-Diet-Foods.pdf

East Coast Medical Excursion Part II

Part II: Maryland to Rhode Island and Home

This is the continuation of my trip back east in October 2014 that originally started as a 9 month wait for an initial consultation with Dr. Henderson. To see the first part of this trip and a blow by blow of the craziness and what went down first hand click here

Booking Flights to Rhode Island; It's a small world after all:

Raised Legs/ Bulkhead Seat

Landing in Providence, RI

I flew Us Airways cross-country from Oregon to Maryland and they were very accommodating the whole way making sure I had the bulkhead seats on every flight (to accommodate the need to keep my legs elevated and because I'm 6'4" and cannot fit in a regular seat) . I also had wheelchair assistance in my own chair.(Medicaid transport covered the plane tickets too!) So when I needed to change my return tickets and make them leaving from Providence, RI instead and then ordering tickets from DC National Airport to Providence I called Delta to explain the situation hoping of course to pull the right strings and get this taken care of quickly, since it was in a matter of days. Well I finally spoke with a Manager and she was out of Wisconsin or Colorado somewhere in the Midwest and we got to talking and I was explaining about the constant movement of my joints and why I was in Maryland and why I was going to Rhode island and I mentioned it was called Ehlers-Danlos Syndrome and it turns out her and all her kids also have EDS   (a much much less severe case, but painful none the less) It's really not all that rare!Why can't the medical system figure that out! Anyways she was wonderful and did the impossible and was able to change my ticket and I don’t even think I paid for my flight to RI... I never was charged! It was such a blessing the whole experience from getting a return email from Dr. Chopra himself and an appointment rushed the next week, to the phone call going so well after fighting with other delta employees who said I couldn’t change the departing location of my flight home. It worked out beautifully.  Go Us Airways the only airline I'll ever use from now on if it's possible!

Dr. Murdoch; Urodynamics Study: The Monday after my appointment with Dr. Henderson I met with Sheila the nurse who takes care of the urodynamic studies at Mid Atlantic Urology Associates in Maryland, she performed the complete study unlike my previous one in Oregon which was incomplete because I was unable to void both 27 ounces and/or 7 ounces (back home they didn't want to push my bladder any further even though I know I can hold up to at least 40 oz. Anyways this time (since they are familiar with EDS Bladders) they pushed me to 32-34ish ounces and I was able to void, so instead of  Nuerogenic seeming bladder that the previous study indicated I guess I was actually diagnosed with a sphincter dysfunction and prescribed .4 mg Tamsulosin or Flomax by Dr. Murdoch. I have only begun recently taking this since the dysfunction has become more prominent and painful. (stabbing pain, feeling the need to go but can't, feeling super full but only have drops left, etc) Financially this appointment was a disaster at first they weren't going to except my approval from insurance (out of state Medicaid) for the appointment so I gave them $700 out-of-pocket  as agreed upon (total eventual being $1,000 cash at the appointment) by the end of my appointment they said they had accepted my insurance and gave me my money back! I was shocked! I mean I was on the phone with my insurance case manager but I still didn't expect that to resolve so quickly or so I thought, but when I returned home I received a bill for over $4000 and I had been receiving phone calls since apparently whomever is in charge of billing over there is not on it and its March and insurance still hasn't been billed! They aren't calling anymore but it’s such a mess, they didn't have my insurance info and they claimed then they did, and I gave it to them several time and then they didn't submit, and honestly they need to do that or they may run out of time! So that mess is not yet been tied up and I don't know what's going on with it now but someone at my insurance company is handling it I think. I hope. Anyways back to the treatment part of this. I have tried the tamsulosin on sporadic occasions since I’m supposed to take it after a meal (30 min to be exact) and I’m not really eating much till nighttime and then I don’t know if I should take it because it says in the morning and I don't even eat for the first time till like late afternoon or nighttime recently. Plus since Dr. Murdoch isn't my treating urologist I have been waiting to see my local guy and discuss options and how I should be handling this, and if this pill is that important with food and timing. I see My local guy in April, pissed I was supposed to go this week (March 6th) but I caught a cold and after waiting 6 months for this follow up I had to cancel! Bummer! The only reason it's taken so long to follow up is that Murdoch’s office kept not sending my records over. it's only 1 page! That’s all it was and it took 5 months to get! So ridiculous but now he has all the notes from all three appointments back east and it should go smoothly from here on out, Just gotta make it to my April appointment. 

Compassionate Care Award
Dr. Pradeep Chopra,
Pawtucket, RI

Dr. Chopra; Suburb EDS Pain Specialist: Let me start by saying that this was the best appointment I have ever had with a medical professional ever!! There really is a reason why he's won the compassionate care award twice in Rhode Island and I wouldn't be surprised if he won again and again! Dr. Pradeep Chopra is the kindest smartest most knowledgeable doctor/pain specialist. Period. And when it comes to Ehlers-Danlos and complex regional pain syndrome he has seen, treated and given countless talks and hours worth of advice to patients. Both online and in person. He is very aware of  CRPS/ EDS their commodities and therapies that may help. He is one of the foremost physicians in the country using Low Dose Naltrexone for treating serious chronic conditions. For me in particular my mom and I went in and he spent six hours with us thoroughly going through and explaining in detail to my mom and I in layman's terms what's really going on with me. He diagnosed me with Marfans, EDS Classic Type, Mast Cell Activation Disorder, Gastroparesis/ Slow motility, he validated POTS/ dysautonomia (and said DON'T get a Tilt Table Test, its miserable and not needed) as well as he gave me a different term for what was going on with the knife stabbing in the back of my head which Dr. Henderson diagnoied as Occipital neuralgia on the left and prescribed a nerve block, but with my steroid experience in the past I was very against a needle in my skull, and Dr. Chopra agreed, he said it likely would just make it worse as I had suspected. (love this guy he really listens!) Dr. Chopra did test for Occipital Neuralgia on the right as well and it was painful and a positive too (the test is just putting pressure with your thumb on the Occipital region and pain especially that runs up behind the eye is positive for Greater ON, if not behind the eye it's Lesser ON (not that the pain is actually any lesser, bad joke) However Chopra he does not believe that the stabbing that was consistent on the left was ON but rather simply neurologic pain and muscle spasms pulling my shoulder out that caused centralized nervous pain to  run down into the shoulder and whole left arm (I mean come on guys I haven’t been able to wear a bra or clothing on this arm/shoulder in over 18 months! Something’s gotta give) He doesn't believe that it's really true CRPS either though there are several indicators for it that other doctors have mentioned (slowed hair growth, color and heat variations, extreme pain, unable to use, inflammation) I mean I know it’s the constant trauma from never ending subluxatons that’s caused it, I just want it to stop so bad!  Dr. Chopra used an infrared surface thermometer on my arms and it showed 1 degree of temperature variation which apparently is also an indicator but he prefers it be more than 1 degree to make the DX which is all good by me, although he still write it down in my notes. 

Close up "We-Fi" With Dr. Chopra

I went to Dr. Chopra planning to talk about LDN and he was excited I was already aware and interested (I had been trying all last year to get a local pain specialist to rx it with no results) He  prescribed LDN  for me at 4.5mg and sent the script off to belmar pharmacy in Colorado where they know how to formulate it the right way with no bad fillers or anything. It arrived the week after I got home and  has helped decrease the stabbing in skull (neurologic pain) within about 10-12 weeks of starting it but not with the tethered cord back problems or shoulder issues  He recommended I start Sublingual Vitamin B Complex 2,000 mg, Vitamin C 500 mg, Chealated Magnesium 500 mg and Alpha Lipotic Acid 200-400 mg (solgar brand) to use only liquid or powdered supplements/ meds and to crush or open all tablets/capsules  as long as they aren't time release, and he also RX'd Zyrtec and Zantac 2x daily (morning and bedtime) for MCAD. He recommended Knee Braces for Patella stabilizing and to prevent hyperextension, and Fibula rotation. Other suggestions where compression gear, aqua therapy, propreception exercises, sitting on a yoga ball and to keep moving when I can but to never push myself, and to only do 1/3 of PT or any exercise I’m given to try. I also need to see an ophthalmologist to look specifically at the shape of the conus and something else it is all in his notes.. his 13 pages of notes THIRTEEN PAGES! He also had wrote some notes for me by hand to take home and directed me on what parts of the conversation to records. I got myself a detailed plan by one of the best!! I knew this was the best thing I could have done! I now have a serious professionals opinion and a plan laid out for my drs back home and they can also have someone to reach out to familiar with my case who could help guide them if we get into sticky situations we can’t handle on our own out here. Just knowing he is an email or a call away is such a relief! If you can get to see him you should he is worth it! Oh and of course he feels strongly I need to follow up on Occult Tetherd Cord Release and Cervicle Fusions later with Dr. H. (which is the opposite order Dr. H had mentioned but I’m fairly certain OTCR should be first and so does the three other specialists I've consulted!, Although I've been on LDN for 5 months  now and I think I may have just really recently (within the last couple days) noticed a notch degree of pain lesson in my low back sacral dimple region, but it’s still utterly disabling and  with an uptake in the neck instability meaning I need to wear the collar more and more now, which in turn pulls and kills my back, what can ya do? I just want all the information possible to make a education right descion for me.  I've kept in touch via email with Dr. Chopra he is wonderful at staying connected with his patients. I feel this appointment was so important and worth it. Truly a life saving excursion all around, mom completely agreed. She felt so much more aware of everything after this! And it was worth it just for that too! 

After Amazing Consultation, Full photo with Dr. Chopra
(Bare shouldered in October)

View from our Window of the Biltmore

Medically Reciprocal State:  Going to RI was a very sudden thing, we managed to get a nice room at the Courtyard Marriott and settled in, they even had a hot tub and since I never get to have a soak mom wheeled me down and we took a nice soak, although it took me 15 min to get off the ground and back into the chair because the dysautonomia had been triggered with a vengeance. Back up in our room I medicated with my handy dandy Co2 Vape Pen and in a reciprocal state too which was so cool to still have all my medical protections all the way across the country if only it was like that everywhere. I even had an acquaintance I reached out to to see if we could connect, the timing wasn't right but knowing people is everything in this world and we had a nice little phone chat which helped prep me for Chopra (she is also a Chopra, EDS, LDN, Cannabis Patient) and I was told that President Obama was in town and staying at my Hotel! ..Turns out we were on the same block and that was why there were dozens of cops in front of the hotel and the whole street was closed for like an hour... our food delivery was late! =) It was kind of neat thought we had just come from DC and Obama had followed us up North =) He was giving a speech at the university and apparently he is only the second sitting president to ever visit Rhode Island while in office. Kind of neat. Anyways I prepared my bag and binder for what was to become my amazing 6 hour appointment with Dr. Chopra, boy did I not have a clue! But after those 6 hours in my chair my hips where on fire, my shoulder was spasiming like crazy and I needed to medicate, BAD! Thank goodness for my vape pens! Well we were waiting on a cab to arrive which was a whole nother fiasco trying to get someone to come out to Pawtucket after 6pm it was taking awhile and had gotten dark and was freezing outside but I needed to medicate asap so just as we go outside (bare shouldered)  I have my pens at the ready in my lap and the Taxi pulls up, I guess I forgot about my pens in my lap (I was bloody freezing, don't forget it's the end of October, sun's gone down and I cannot wear clothing on my shoulders nearly at all) and I was dealing with this crazy taxi driver who was really loco and didn't have room for my wheelchair (even though he knew I was in a chair) cause he didn't want to move the car seat from the trunk, that when I transferred to the car I guess my pens fell out on the ground and probably got smashed by the car. Anyways I became frantic back at the hotel when I couldn’t find my pens and since I didn't travel with green just the oil pens and now they were gone and I was dyeing! I needed relief ASAP. But I managed to reach out to Patient Advocacy Group and told them my tale and my connections in the area to the EDS Cannabis Patient I knew =) and they were incredible, went above and beyond and someone was so kind enough to bring to our hotel some medicine to make it through till we left. I was the luckiest girl in the world but we didn't have a piece, or papers or a lighter... so mom walked over to a CVS picked up some papers and a big ass lighter and we were ready. but the Jay didn't come out so good since we had no grinder so guess what? In the Lobby the hotel had a little  pantry and they had Apples! Mom ran down to grab one and a plastic knife and I made my first and only ever Apple Pipe! 

1st ever Apple Pipe and RI Meds

It was weird but did the trick, I’m sure we stank up the whole hotel room, our food delivery guy was cool and gave me a heads up you could smell from the hallway.... oh well, It’s the only thing that does the trick and I had fabreeze and the window open, I mean I was in really bad shape...stomach, spasms, nausea, subluxatons and if you've followed me on tumblr or instagram at all you'd know that I’m really only now recovering from the trip, I spent a good 2 1/2 months where I couldn't leave at all cause my hips where so misaligned and loose. But I digress. I’m just eternally grateful to the women who helped me out when I as in dire need. It’s nice to have Reciprocal States, Thank You Rhode Island! Thank you Patient Advocacy! 

Goofy Mother Daughter Duo

Transferring Flights, Legs Up,
Bags and Pillows at the Ready

Heading Home: In my chair and on the Providence RI Airport Runway, I’m wheeled up a massive ramp, loaded and hobbled onto the flight into the bulkhead seat, cause remember I’m 6'4" and I NEED the knee room, plus I can't walk any further then just past first class to the first economy class seats on our first flight of what was to become the longest day of my life! Three Stops, 13 hours, 4 pillows, 5 bags and priority boarding thanks to my chair, Thank Goodness!  The flight began with an announcement like no other I will ever hear again it went something like this. While the rest of the public were entering the aircraft our pilot came over the loud speaker and rushed everyone who had only just begun being boarding saying "If everyone can find there seats and store there bags quickly, we have less than five minutes to board everyone, in order to beat Air Force One off the ground!" We were literally racing the clock to beat the president into airspace! If we didn't we could be grounded for an hour and who knows how many connections that could mess up! But i got such a kick outta this, I just couldn't get away from out Commander and Chief he was everywhere! =)

Bulkhead Selfie
(TLSO & Aspen Vista)

Our First stop was a 2 1/2 hour layover in Atlanta. Which was a nifty airport we were transported through the terminals on a train/tram like vehicle, that was very crowded and the side to side jolts really knocked my neck and shoulders around! Then once I was at the terminal we didn't have long to wait until I was wheeled onto the tarmac and waited for a special shuttle bus that’s wheelchair capable to take us too our aircraft. Once on the flight all went smoothly. Here’s when it goes downhill, last stop, Portland, 300 miles from home another couple hour layover, I was a mess by this time, Mom was starving, it was late like 8pmish so we sat down at a Restaurant near our terminal, I got a chicken salad with oil and vinegar minus crouton and cheese and mom got a burger, But see I made a big mistake my body was being very uncooperative already with most foods since the trip had began ( I was cheating and had ketchup and chicken on the trip), I have reactions to nightshades sometimes more than others, but that night i learned raw is a no no and the roughage of the lettuce plus  the chicken it just  didn't go over well and I was keeled over, sweating, spaisming and subluxing, dying from the stabbing gut pain and nausea, not a way to start a flight, , I was trying not to sob or swear or speak in toungues cause communicating when you’re like that doesn’t usualy go over so well. at least not for me. Finally it was time to board and I find out I could not be in the bulkhead seat because this is a small aircraft and the bulkhead is also the emergency exit for Alaskan Airlines (small aircrafts), and I am not able to do the whole helping people off the plane in an emergancy, i used to no problem but not now! UGH so instead no one sat in the bulkhead and I had to shove myself into the tiny seat behind it and low and behold the tray on the seat in front of me jabs me right in the knee cap during some turbulence right after take off and knocked my fucking knee cap outta place, it was horrible and this time I did cry a bit, a bit more then a bit, mind you emotions where really high at this point too, everything had come to a head and mom was frustrated and it was late and we just wanted to be home. So the rest of the 40 min on that flight was utter hell, I've learned my lesson I will NEVER take a pit stop in Portland again. Not Ever! The knee cap was only the beginning to what was to  became the battle of the leg for the next four months. And it’s still bad just, not as bad. My hip, knee and ankle did a land slide imitation on me that has yet to completely resolve. Part of why I’m so nervous for my follow up in April. I just don't know how much the travel is going to destroy me again. Although this trip will only be a couple days not two weeks.

Insurance: 

AllCare Medicaid through Oregon has been amazing through the course of these events I have my own coordinated Care Case Manager and she was fantastic through this whole thing making sure approvals were going through and everything was set. We are still waiting on reimbursements from certain things. They didn't end up approving the Chopra visit (cause they said it wasn't necessary and there was no time to get it approved anyhow from the Henderson Referral to a Pain Specialist for the Root Block, which I felt if Chopra said I should I would but he agreed it wasn't the best course of treatment for me, gosh that man is such a good listener and so knowledgeable and  a wonderful communicator.  Totally worth every penny it cost from my collage fund money I cashed out to afford this whole Maryland initial trip. Anyways we're still not sure what's going on with the payment of Murdoch but as far as I know Medicaid is planning to cover my follow up to Dr. H in April so we'll have to see what happens from there. Although if I don't have the right mobility transport this time, I will have to postpone the trip once more. My local doctors and I have been on it these last several months! Those notes made such an impact.  I have orders in, waiting on approval for a 40" high raised shower seat with arms, Breg Shoulder Abduction Pillow, Knee Braces KFO like, Ankle Supports UCBL, and an Electric Wheelchair... it’s really needed! My legs are so bad, hips too, but pain running down behind legs just giving way after a few steps, I can't make it around very well at all most days. But here’s to hoping thing got better come spring like they have in the past although I’ve never been this affected before in my life. So I know there are more adjustments that will need to be made. I am also heavily pushing to see this sports medicine guy who does prolotherapy I've gotta try it for my arm as soon as possible!

The Plan: 

Dudes so how things went with Dr. Henderson and after talking with the second opinion phone appointment Dr. Donlin Long (who doesn't operate anymore just gives opinions) I feel pretty strongly about pursuing occult tethered cord release, I understand it's very new and there is no follow up date on the operations out there. And I'd like to maybe get a second opinion from someone who actually does surgeries.  I am sent off my paperwork to the doctor in New York that I was told about and I heard back from him last week, he is out of network, but the cost for the initial consult is only $250 and he was willing to meet me and take an in-depth look at my case. Occult Tethered Cord is pretty controversial and it’s still the new kid on the block, when it comes to taking care of something you can't make out before you go in. Now I don't think I could afford to have him do the operation although he seems like the one to do it, because he flat out won’t accept Medicaid or Medicare, but I like how he does the surgery compared to what I've heard second hand about how Henderson does it, something about putting in metal.. which Im not cool with. But  we'll see what happens there after my follow up with him.  I also scheduled an initial meeting (In New Jersey) For a couple days after my Henderson Follow up April 27th, and depending on how that appointment goes and what I learn from him on how he does the operation I will be able to make a more informed decision on who will do the procedure. I am even considering reaching out to Dr.  Bolognese to address my OTC if the new jersey guy and i can't figure out a payment stragey. Also I of course desperately need to know what is happening in rotation with my neck since we were unable to get a read from the original disk I had with for Dr. H, since apparently the atlas view was not even burned onto the disc! So I plan to get some answers about that image from Dr. H (newly burnded disc with hopefully the right images intact) and then learn the nitty gritty details of the surgeries so I can make the most informed decision possible and discuss with him my feelings on dealing with OTC first and hopefully scheduling that for the end of August after what should be my best friend's wedding.  I do not believe that if I decided to go to New York/New Jersey and have a second opinion with the doctors up there after my second appointment with Henderson that insurance would cover the flights I have to get in touch with Mercy Flights soon to find out if they can help with that. cause I really have no idea and I don't know how I would cover it either but it's just what's it going to have to be. Figuring it all out as we go and know if I will have the electric wheelchair or not and I need to know soon, because I only have about 2ish  weeks left to cancel without a penalty!

What I've been doing, trying and how it's been going:

Well I've been on the LDN like I said which has been helping with the neurologic pain in my skull, THANK GOODNESS GRACIOUS!! I thought that was gonna be the death of me I've been taking the H1 and H2 antagonists (Liquid Childrens Aller-Tec (Zyrtec) and Crushed RX Ranitidine (Zantac) which seems to be helping with some of the MCAD symptoms by not completely, and it must be taken together or no results.. it took a couple months I think to really notice.  I have stopped gabapentin, started lyrica, stopped lyrica, tried a few muscle relaxants Zanaflex (put me to sleep for 2 hours with more spasms on waking) and Baclofen which I’m not sure does anything, but if it does it's just ever so slight, I really think the cannabis helps to boost it a bit though cause alone it did nothing but with vape and oil it seemed to calm the arm down just a smidge. I've been on several new supplements and vitamins which I will be addressing in another post more thoroughly soon but I have included Ibergast and a Liquid Ginger Extract, liquid vitamin D3, Sub-lingual vitamin B12, Cod Liver Oil and tried multiple vitamin C's and magnesium’s but finding ones that I wouldn't react has been difficult, but I’m tolerating the Solgar brand much better now than I was others, But I still have a really hard time getting the magnesium down. My GP like symptoms were awful when I got home and it's only begun becoming more manageable the last couple weeks, I'm mostly on liquid/soft foods diet partially for my dysphagia. I’m staying away from high FODMAPs which is a big trigger, I try to stay low Histamine and Mostly off all grains... I cheated and had corn puff cereal and had some aspiration issues and had that checked out with a Nose scope and a Endoscopy and all that was found was I have an odd turn to the left with my esophagus. Recently  I've tried some rice, amaranth and some other mixed grain gluten free pasta instead of corn stuff but it gave me some intensely painful bloating so I was right to stay away from grains  these last couple years. I’m seeing a Dietitian now whose helped me get back to eating a little more, instead of living off ginger hard candies all the time which I was when I first went to see her, the gastroparesis was worsened after my trip cause of the nightshades, chicken and then of course the new med I started on Chopra's recommendations, the liquid children’s aller-tec (Zyrtec) I originally found at Walmart that  was  dye free  I didn't realize also had sucralose in it and I was poising myself 2x a day with the medicine that was supposed to help treat my tummy, but really was making it a million times worse. Thanks to COSTCO I get two bottles for the price of one and no SUCRALOSE! Yay! And now I can tell the the h1/h2 combo dose work even just a little.  Lastly I am in the process of getting my abduction pillow and the braces which should be arriving in the next week or so.  Some very exciting things are coming together I've been prescribed an electric wheelchair which will see if insurance may cover that would make this follow-up back east more likely to happen because I don't know if I could make it out there in April in my current condition and the manual chair  is not the right size for me at all (it was  inherited) it its better than nothing but it’s a killer too.  Just leaving the house has been a killer. There is still much to do and a lot more to consider in the next couple weeks. But this is whats been going on and whats happened. I actually have started to use my stationary bike more and more the last week. Hope to keep that up!

I hope that by posting these descriptive blow by blows I can help others find ways to help themselves and not have to fly all over the place to find help,  but if they do they can kinda know what there in for. Also I feel having this typed up for myself is a healthy way to teach myself and work out whats going on in my life. Live an online journal situation.

Peace and Love and All kinds of good energies to my whole Spoonie Family. 

May you all find some relief in your life.

Tall EDS Chick