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Syringomyelia, Doing it DOC-cy Style

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I’m not a real doctor but I did play one in a movie once… Ha!  Actually people just call me Doc because of my initials being MD.  I know that doesn’t sound special but my mama say’s I’m Special.  🙂

What is DOC-cy Style… well it’s my own personal methods for dealing with symptoms related to my Syringomyelia.  Many of these methods have helped me at different times in different ways.

I’ve found that many different things put strain on my spinal cord and / or neurological system but it’s been over a long period of time.  I figured I would capture some details here so that maybe it could help some of my fellow Syringomyelia and Chiari warrior friends.

I’ve tried a lot of things.  Some have worked and most have had little to no noticeable result.  Here is a list of things I’ve researched, reviewed and tried.

Body Positioning / Exercises

Descriptions Results
Sitting straighter in chairs This has lowered the strain on my back and likely my spinal cord (lower pressure against my syrinx.)
Laying flatter in bed vs crooked neck Seems to have made my thoracic area of my spine less sensitive and sore.
Raised position of phone

Reduced phone use (texting, Facebook, etc.) should continue to provide relief due to not stretching the spinal cord.  Bad posture = bad SM days. <Read Article>

Not laying on stomach while sleeping. This has helped my arms and neck tremendously.  Also, if I laid on my stomach, this makes my neck twist to the side thus additional stress on vertebra and spinal cord. <Read Article>
Focused walking By focusing on my walking to make sure that I am lifting my legs properly allows me to better control the wobble and dropped foot issues.  This seems to help with joints not rocking that would cause even more pain and over corrections using my back.
Careful stretches I know that with my Syringomyelia, I can’t just sit around thinking it will go away, so I do some careful stretches.  I’ve had to be careful but it can definitely be overdone and I have.  Stretches have helped with spasms and cramping muscles.
Walking as much as possible I try to walk as much as possible each day at work and home.  Averaging about 2 1/2 miles a day up to 15 in one weekend.  This has helped with muscle cramps and avoiding or dealing with atrophy.
Swimming I love to scuba, snorkel and just float around.  Ocean surf works me out the most but it also moves my body around allowing for more flexibility. The weightlessness is always welcome with my back and spine.  OCEAN THERAPY!
Losing weight I’ve lost nearly 10 pounds while making several changes listed in this article.  The less weight I have, the less pressure on my back thus happy spinal cord.  <Read Article>

Herbs, Spice and Everything Nice

Descriptions Results
Turmeric This has helped a little when I remember to take it consistently.  When I do, the inflammation from my syrinx operations seems to be kept a bay vs. using ibuprofen.  We add this to food, juices, etc. 
Ginger Ginger seems to help the pain aspect.  It also has a calming effect on my stomach from when I have to take ibuprofen or other stuff.  I add it to juices as well.
Valerian This helps greatly with my muscle spasms and boy howdy it will knock your butt out.  Works like a charm and I’m generally relaxed and refreshed the next morning.  Stinks to high heaven though.  Kind of like wet gym socks.
Eucommia I noticed absolutely no noticeable results with this plus it spooked me a little because the name looks like you may end up asleep for a long time.
Potassium / Magnesium When I notice muscle cramps I first take potassium / magnesium since sometimes I’m bad at drinking as much water as I should.  Within an hour I’m usually good to go.  This has also helped calm my heart down at times.
Turmeric / ginger concoction called Inflammotion To be honest, this combination just didn’t seem to do much more than Turmeric by itself.  When stuff like this is combined then there is far less of any one ingredient unless you take a lot of it.  I HATE PILLS!
CBD Hemp Oil I have had some pretty amazing results with this.  Lowered pain, increased sensation, higher energy, etc… I documented all of my observations in this link.  AWESOME STUFF!

Kava Kava

This did absolutely nothing for my back but it did seem to help my tension headaches a little.  I’ll likely stay away from any more purchases.  However it does sound like a nice drink.

Pharmaceutical

Descriptions Results
Gabapentin There have been some positives results from this but they were short lived and a trend began with the doctor of continuously increase in dosage.  NOPE!!!  With the CBD Hemp Oil I’m already down to 1 of these evil pills.  The side effects and withdrawals are HORRID!
Flexeril I’d rather stick with the valerian.  I can wake up easier with valerian.  This stuff messes me up the next day but I sleep through EVERYTHING!  I almost even slept through our cat making biscuits on my head.
Hydrocodone This definitely helps from a ‘pain vacation’ perspective but causes horrible constipation and I have a hard time sleeping then I have to take some other something to counter that.  I HATE PILLS!!!
Pain / Inflammation patches This was as close to useless as I’ve tried so far.  It was localized but fell off easily, didn’t last long and cost $80 out of pocket. 
Back brace Yeah… this was stupid.  I’m not sure what the heck the doctor was thinking at all.  Guess what… His office charged the insurance company $998 for it.  I found the same one on Amazon between $90 and $120.  GO OBAMACARE! 
Ibuprofen / Acetaminophen Well these do help but they are never a good long term solution and play havoc with my internals.  I will continue to use them as needed but rarely have to because the CBD Hemp Oil seems to work better.  YAY!
TENS Unit This has helped with muscle locks, spasms and muscle strengthening.  This is a great part of my pain arsenal.

Diet

Descriptions Results
Lowered sugar All of these sort of things can cause crazy stuff to muscles, joints, spinal cord pressure, blood pressure and more.  When my wife and I started changing our diet, we both have noticed beneficial results.  This stuff in high amounts isn’t even good for anybody when they are 100% healthy.  Add my Syringomyelia into the mix, well it’s pretty obvious that if I wasn’t willing to change then I couldn’t expect anything to get better.
Lowered caffeine
Lowered nicotine
Lowered alcohol
Lowered sodium
Lowered gluten
More water More water has helped me feel more energetic.  I poop more (TMI) and I assume more toxins are being flushed from my body and flushed down the toilet.  This is a win win by drinking more water.
Taking multi-vitamins I know this is something I should do regardless but alas it’s easy to forget.  However, I was taking ‘Alive’ multi-vitamins religiously for a few months.  If there were any difference, it was so gradual that I never noticed it.
Adding turmeric to food My wife and I add turmeric to as much stuff as we can.  I believe in turmeric very much for anti-inflammation.  You can find information all over the web about it and it can be purchased anywhere.  I noticed after short periods when I take it that I don’t seem to need ibuprofen.
Increased fish / chicken consumption vs beef and pork By reducing pork and beef, I haven’t really noticed a lot of differences other than not as many stomach aches and grogginess,  This means I get up and move more which is a good thing.  However, I HAVE TO HAVE MY STEAK AND BURGERS!!!
Juicing (Fruits and Veggies) This ROCKS!!!  There are lots of recipes on the internet for pain remedy juices.  They really freak’n work.  I always add ginger and turmeric to them.

Avoidances

Descriptions Results
Over flexing / stretching This tends to cause my body to catch on fire like Ricky Bobby.  It’s good to stretch and flex but knowing my limits has helped me avoid the body blaze.
Picking heavy stuff up This is pretty self explanatory.  Awkwardly weighted stuff is what causes most of my issues.  I still rough house with my daughter and wife.  Before you say it… I’m not saying they are heavy.
Straining while taking a poop Well, it’s a great excuse to relax.  Straining while dropping the kids off at the pool is not a good thing.  My body will have spasms like crazy if I strain.  So I sit and relax and there have been a couple time I thought my Syringomyelia got the best of me but my legs had simply fell asleep.  Thank goodness for Angry Birds.
Too much walking I assume that when I am over doing it when I walk too much, it can build pressure in my spinal cord and we all know what that means.  The crazy thing is that ever since I started the CBD Hemp Oil stuff I’ve been able to walk far more and longer.
Riding in a car for too long My wife and I have figured out that it’s best to just stop and stretch every couple of hours.  Otherwise my legs get jiggy with it, begin cramping and my thoracic area becomes sore.
Sitting or laying in one spot too long I simply can’t sit still for too long, but when I do it causes muscles to begin cramping and numbness takes over.  Ok, that actually sounded like a Dos XX commercial.

Medical Procedures: If you have read my ‘About Page‘ on SyrinGoWhat.com, you will see that I had 2 decompression operations with 2 corrective procedures.  These did stop the progression but alas it is causing other issues related to the operations themselves.  My syrinx has not grown in 13 years.


Syringomyelian Stay Strong - SyrinGoWhat.comTo make a long story longer, the above includes most of the things I’ve tried over several years along with my observations.  Some work well and some work not so much.  None of the above cures anything but for now it’s all about relief. 

I’d say always be careful with what you try.  Review, research and ask professionals.  For me, I can’t just sit around and hope that ‘poof it can be fixed’, so I try to help myself.

I hope that some of the stuff in this article may inspire you and possibly even help.  Life is about hope and faith.

Joshua 1:9 ESV Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.

Please feel free to send me your thoughts or more resource links using my contact page.   Peace, Love and Pancakes… oh yeah and wishes of many ocean waves — Michael Doc Davis (SyrinGoWhat.com)

Syringomyelia, To CBD or not to CBD

Syringomyelia, To CBD or Not To CBD© SyrinGoWhat.com, Copyright Protected. Feel free to openly share this link anywhere, but please ask before copying this content or parts of this content elsewhere.

This is in no way advocating or selling anything.  No product names will even be mentioned.

I have read and tried all kinds of stuff with natural and created ‘helpers’ for my Syringomyelia.  To be honest, I am extremely skeptical about anything and everything that anyone says could help with this Syringocrap.  I’ve passed on information about stuff that seems to work for me along with the stuff that hasn’t.  I’ve tried turmeric and ginger, which did have some minor positive results.  I’ve also tried various other herbs, spices and medications including Gabapentin.  I’m really still not convinced that Gabapentin is doing much for me but I’m also not convinced to stop using it either… GRRR!

Syringomyelia, Eating EverythingSo here I am.  My wife and I have been reading about something called CBD Oil.  It suppose to have nearly the same helper qualities as marijuana but without the side effects of thinking everything is funny and anything is yummy.  It’s based on hemp seeds vs. marijuana and contains no THC.  I work 50 hours a week and I can’t afford to deal with marijuana side effects, doing anything illegal or the grocery bill that comes with it.  CBD Oil is 100% legal in all 50 states.  Heck, hemp seeds are even sold at Walmart and Walgreens.

So here I go.  I’ve been trying out a lower dose of CBD Oil just to see if I noticed a difference past any possible placebo effects.  What I’ve noticed so far is that I seem to not be as anxious or stressed thus placing less pressure on me and my body.  This in turn seems to be making it to where my muscles don’t hurt ‘as much’.  My stomach doesn’t seem to hurt and I seem to poop more regularly with I'm not saying, SyrinGoWhat.comout any strain.  YAY!!! Less strain equals less pressure on my spinal cord which means less spasms and less pain there too.  I’ve never really had any headaches associated with Syringomyelia but I have noticed that I haven’t had nearly any tension headaches from my very stressful job.  On a even more personal note, the bedroom play has increased a bit since there isn’t as much fear of how long it will take to recover.  No, it’s not that wild in there… as far as you know and I’m not tell’n.  🙂

So what am I trying to say?  I just recently ordered a much stronger version of this CBD Oil for my big experiment.  Once it arrives, I will begin a daily log of anything I do or don’t notice as far as any changes or differences.  I’m not mentioning or discussing the product’s name at this point.  Once I have completed 14 full days of experimenting and not the college type of ‘experimenting’, I will post what my ‘opinion’ is.  Have you ever noticed how opinion sounds kind of sounds like onion?  I guess both can make you cry too.  <– ADD SQUIRREL moment!  After I publish my opinion / onion, you may want to ask yourself, ‘To CBD or not to CBD’.

Any who, I’ll let you know what happens and stuff.

Romans 8:18 ESV For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us.

Please feel free to send me your thoughts or more resource links using my contact page.   Peace, Love, Pancakes… — Michael Doc Davis (SyrinGoWhat.com), fellow Syringomyelian

Syringomyelia, Welcome to HELLo

Syringomyelia, Welcome To HELLo© SyrinGoWhat.com, Copyright Protected. Feel free to openly share this link anywhere, but please ask before copying this content or parts of this content elsewhere.

Although Syringomyelia may seem like hell at times and for some nearly all the time, but it also seems to be an interesting way to meet people and say HELLo. 

I find the majority of my comfort with my family, the beach and resting but I also enjoy writing these stories, perspectives and a few good laughs.  This often results in my wife and I meeting new folks.  We love saying HELLo to everyone and hopefully cheer up their day and raise awareness.

We obviously can’t take the pain away from anyone, but a little lighthearted / funny, inspirational, and personal experiences may just be that quick physical or emotional pain vacation that someone needs.

Both Christy and I were brought up to love everyone and this is how we are bringing up our Michael and Christy - SyrinGoWhat.comdaughter as well.  As a matter of fact my wife recently saw an older person and said, “Kaylea and I love old people.”  However, me being older than Christy, I had the opportunity to point out the foot that she just had stuck in her mouth as I did my best to keep a straight face while laughing VERY hard on the inside. 

We are like any other couple with ups and downs, difference of opinions, etc.  Yet, we always agree that a simple HELLo can make a person’s day.  We also agree that tickling a person when they have gas can turn into some interesting aromatic entertainment unless your spooning.  No this is NOT just an Arkansas thing.  🙂

Syringomyelia SUCKS and we ALL can agree on that but the worst thing any of us can do is alienate ourselves or descend into a darkness of ‘no one understands’.  There are plenty of people that ‘understand’ and I’ve listed lots of support groups for SM / CM warriors along with those that love and care for them on this page – http://syringowhat.com/is-there-support-for-syringomyelia-Chiari

I would give this advise, one that sometimes I mess up, be open about what you are going through.  Also, be receptive to how it makes those around you feel.  You might find out that you both are affected by this disease, just in different ways.  Understanding this is EXTREMELY important!

Syringomyelia, Group Hug - SyrinGoWhat.comAnyhow, don’t be a stranger, share your stories, fellowship with others (with or with out your disease), never be afraid to laugh a little and just say HELLo.

If you see a post from us on Facebook or anywhere else for that matter, please feel free to say HELLo and we will do the same. 

1 Thessalonians 5:11 NIV So then, encourage one another and build each other up, as you are doing.

Please feel free to send me your thoughts or more resource links using my contact page.   Peace, Love, Pancakes… — Michael Doc Davis (SyrinGoWhat.com), fellow Syringomyelian

Why ask Why? Syringomyelia Shouldn’t be a mystery!

Confused about Syringomyelia treatment -- SyrinGoWhat.com

© SyrinGoWhat.com, Copyright Protected. Feel free to openly share this link anywhere, but please ask before copying this content or parts of this content elsewhere.

I found that when working with doctors that I made several mistakes by assuming that the doctors knew everything.  No human can.  Part of their training is instilling confidence in their patients.  Some doctors translated this into ‘never act like you don’t know something’. 

This situation can be a big risk or no true path to dealing with the root cause of symptoms.  I’ve learned to ask the doctor questions when they suggest a treatment, a prescription or nothing at all.  The doctor should be able to answer any of your questions if they are providing an action plan.  My suggestion is to ask questions, mainly ‘Why?’. 

When you interview your doctor, you may just help him or her discover that they may need to learn a little more about Syringomyelia.  I have another post on my website called ‘Syringomyelia Caregiver Quick-Tip Pocket Guide‘ that contains a document from wstfcure.org.  This is a great packet to hand your doctor.

Here are some of the questions I try to ask:

  • Why would this affect that and how?
  • Why are we doing another MRI?
  • Why are you prescribing this medication and how will it help?
  • Why or how will increasing the dosage of my medication help?
  • Why am I being referred to a different or another doctor?
  • Why do I not feel like I am stabilizing or getting better?
  • Why would you think that my disease isn’t the cause of my pain?
  • Why can’t we try something different than what just treats symptoms?
  • Why would you ‘think’ you know and is it wise to base my treatment on that?
  • Why would you prescribe physical therapy as a cure if some of those activities could make it worse?
  • Why do you think stretching fixes my issues?
  • Why wouldn’t you want to know more about Syringomyelia?  Here is a packet.

Some times I just want to start asking random questions just to see how they respond:

  • Why is the sky blue?
  • Why did I have to wait so long?
  • Why is this room so dang cold?
  • Why would a person feel that another person’s time isn’t as important as their own?

There are plenty of more questions that I ask.  However, many times I seem to not be given enough time to ask them or feel rushed and I forget.  I need to remember that I am paying for a service and I should be satisfied by that service.  I need to MAKE the doctor think and learn before just throwing suggestions and treatments at me.  I AM IN CONTROL!!!  I need to always write down every question I want answered and my doctor will need to answer each one.  This is my life, my appointment and my money.  So now I ask you this… Why not ask why or what or how or when? 

Remember this my friends, you are in control.  You got this!

Deuteronomy 31:6 NIV Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; He will never leave you nor forsake you.”

Please feel free to send me your thoughts or more resource links using my contact page.   Peace, Love and Pancakes — Michael Doc Davis (SyrinGoWhat.com)

Is there support for Syringomyelia? Yes there is!

Is there support for SyringomyeliaIs there support out there for people with Syringomyelia and Arnold-Chiari Malformation?

Absolutely, there is!  

One of the biggest battles that went with accepting the fact that I had Syringomyelia was the struggle to find more information about it.  This was when I found out that what I had was as rare as my crazy type of comedy.  Yes, I am a comedian but I do take this and all diseases VERY serious.

I have found lots of groups, Facebook pages and websites with great information on them.  I put some of what I have found on the ‘Is There Support?‘ page on my website http://www.SyrinGoWhat.com.  I hope that this page is a good resource of resources that can help you too.  

We all need to help each other and help doctors help us.

Please feel free to send me your thoughts or more resource links using my contact page. — Michael Doc Davis (SyringoWhat.com)

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