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!!!

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