SyrinGoWhat.com

Syringomyelia & Chiari Resources

Tag: Confused about syringomyelia

Syringomyelia – Weather or not??? The pressure is on…

Syringomyelia - Weather Pain - SyringoWhat.comIt can’t just be me, but my wife and I have possibly determined another trend in what may agitate symptoms related to my Syringomyelia.  We finally realized after a few years that later in Fall seasons I start having more and more frequent but sporadic pain and discomfort.  Apparently, my syrinx has seasonal allergies to fast shifting between high and low pressure weather fronts, specifically when a cold front arrives.  Ultimately between the end of Fall and the first part of Spring, my Syringomyelia symptoms ‘rain, sleet, hail and snow’ in.

I’ve read other articles about weather fronts and how it affects arthritic people among some others but I never would have thought it would affect my Syringomyelia.  However, it makes since now.  As a precaution my doctor made sure I was tested for arthritis among a plethora of other possibilities with no issues resulting.  If you’re wondering how we came up with the hypothesis of weather affecting my Syringomyelia, then here is our thought process.  High to low and low to high pressure in hydraulics is used to affect the position of heavy machinery.  So, with that thought, pressure changes in the weather seems to affect the fluid pressure in my spinal cord thus sporadic pain impacts and fluctuating Syringomyelia symptoms.  In late Spring to early Fall, the weather doesn’t change as much with cold being a factor and I seem to me more comfortable along with a more stable quality of life. 

I decided to lookup related information on Google and low and behold there was actually a small blog article talking about the same thing on ASAP.org (http://asap.org/index.php/blog/weather-and-cmsm).  I truly believe that weather is a key factor in my pain, ‘weather’ you believe it or not. 

Syringomyelia - He Said, She SaidNow with all this being said, my wife and I can almost always predict when the real bad times (symptoms) are coming.  After my last doctor’s consultation, he
also agrees with this hypothesis and now is very open minded on how to help keep me up with the right pain meds for when I need them.  I don’t generally use prescription pain killers anymore but my doctor now ensures I have them in the event that bad times do ‘storm’ in.

Jokingly my wife and I keep thinking this is the final reason we needed for us to move to Florida for more stable weather without the high pressure cold fronts.  However, we also truly believe salt water heals and I even wrote an article about that as well that you can read using this link.  OK, we just want to be in Florida regardless.  J

Barometric Pressure, Weather and Syringomyelia - SyringoWhat.comMy advice at this point is to pay some additional attention to the weather when pressure changes are going to occur and then make note of your symptoms the days leading up to pressure change and several days after.  I’d love to hear from you if this seems to be the case for you as well by using the contact page on my website.

Keep strong my friends and keep God in your life and hearts.

Jeremiah 17:14 NKJV Heal me, O LORD, and I shall be healed; Save me, and I shall be saved, For You are my praise.

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 Syringomyelia Warrior

Syringomyelia, Glory Hole-e-luiah

Syringomyelia, Glory Hole Falls, Arkansas - SyringoWhat.comWhat a crazy, fun, adventurous and victorious day against Syringomyelia traveling to the Glory Hole Falls between Fallsville and Edwards Junction, south of Boxley Valley, Arkansas.  Unfortunately, my Syringomyelia struck before we even got started.  This time in the form of needing to do #2.  Mind you, I have never ever in my 43 years of life pooped in the woods.  Today was my day and I executed flawlessly.  The better news is that I didn’t find out if bears pooped in the woods with an accidental encounter.  I wasn’t too worried since the shear whiteness of my rear would have likely blinded any potential predator.

Syringomyelia, Glory Hole Falls, Arkansas - SyringoWhat.comOK, back to the adventure… we arrived roadside on HWY 21.  There weren’t any stores, houses, bathrooms, places to get something to drink and limited cell service.  With Syringomyelia, this ups the risk significantly but I was not about to turn back.  We started down the trail and I knew this was going to be a BIG challenge.  The trail started out pretty flat but went downhill quickly and literally.  At that point it was clear why they called this trail ‘Moderate’.  My wife and I pushed ahead descending nearly 200 feet down in elevation.  The entire time as we descended down the uneven rocks, sporadic muddy spots, etc… I enjoyed the trail but I was also concerned about the trip back out and up.

Syringomyelia, Glory Hole Falls, Arkansas - SyringoWhat.comWe arrived at the top of the falls and all of the struggle to this point was well worth it.  However, we still wanted to see the bottom of the falls as the water flows through the glory hole.  There were several slippery spots and now absolutely NO cell service.  We had to be very careful and I used a hiking stick for stability.  Syringomyelia, Glory Hole Falls, Arkansas - SyringoWhat.com Syringomyelia, Glory Hole Falls, Arkansas - SyringoWhat.comNow at the bottom of the falls, I have to say it was VERY impressive and it was very happy ending.  I silently thanked God and my wife for the strength and I also believe CBD helped get me get to this point.  We enjoyed the cool air and view.  It was AMAZING!  Nature sure can make some amazing scenery.

Now it was time for the trek up and out.  I knew that it would be hard but nobody was going to do it for me.  We climbed and climbed step after step.  I never thought about the entire task, just the next step.  We finally made it back to our 4Runner and were VICTORIOUS!  At the end I did nearly 7,500 steps for the day, climbed the equivalent of 36 flights of stairs (200+ feet in elevation)

Syringomyelia, Glory Hole Falls, Arkansas - SyringoWhat.comSyringomyelia, Glory Hole Falls, Arkansas - SyringoWhat.com

Ultimately with God’s love, my wife by my side, CBD in my system and a go get’em attitude… I can nearly do anything.

Matthew 19:26 NIV Jesus looked at them and said, “With man this is impossible, but with God all things are possible.”

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 Syringomyelia Warrior

Syringomyelia, Thankful and Giving

Syringomyelia, Thanksgiving - SyrinGoWhat.comWith Syringomyelia, sometimes it’s hard to find the things that I’m thankful for when I get overwhelmed by pain, discomfort or inconsistences in health.  However, many times it doesn’t take much for me to find plenty to be thankful for.  Mostly it begins each morning and continues throughout the day when I take the time to reflect, it makes it easier to notice my blessings.  There really are so many in this world that have it much worse than I do… just watch the news.

I am thankful for (In no specific order except the first 3):

  • A loving and loyal God
  • The love and patience of an amazing wife and daughter
  • My family and friends
  • Crab legs and orange sherbet
  • Each day I wake up
  • A home, food, transportation, a jobSyringomyelia, Thanksgiving Practice - SyrinGoWhat.com
  • Oceans and beaches
  • My cats and their silliness
  • Giblets are not as gross as they sound
  • Walking and functioning while I can
  • My Syringomyelia could be much worse but isn’t
  • There is support for Syringomyelia
  • DVR’s so that I can avoid watching commercials
  • My freedoms as a US Citizen
  • 2nd Amendment… pew pew
  • Ability to give back to the community
  • There are only 2 terms for a president
  • Laughter
  • Natural herbs and stuff to help with my Syringomyelia
  • Good poop days and Lysol
  • The internet – plethora of information
  • And much much more…

Syringomyelia, Thanksgiving Butterball - SyrinGoWhat.comHonestly I could go on and on about what I am thankful for but I a love giving even more.  Being able to make people laugh with my comedy, provide comfort in my writing, helping charities with promotions and more.  OK, I like to give my wife and daughter a hard time too but don’t tell them that, because I like to keep them on their toes.  🙂

Yes it is still hard at times to see past the limitations of this body of mine but I do and will look past it every day.  I challenge everyone to thank of two things you are thankful for any challenge that is in your life.  Give a little of your time to help others and it you might just end up being thankful for even more.

Have a very blessed and happy Thanksgiving to everyone!

1 Thessalonians 5:18 ESV Give thanks in all circumstances; for this is the will of God in Christ Jesus for you.

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 – Trick or Treat

 Syringomyelia, Trick or Treat - 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.

Happy Halloween everyone.  I’ve posted on Facebook that I thought it would be kind of funny to make a Syrinx costume and dress up for Halloween but it didn’t quite happen.  I debated on what that would actually look like and was thinking it would look like an elongated balloon.  However, with my luck people would have thought I’m an Oscar Meyer wiener or some other kind of wiener.   Come to think of it, I’ve been called that a few times, HAHA!  You have to admit that this would have been a hilarious way to raise awareness about Syringomyelia.  Syringomyelia, Syrinx or Hot Dog - SyrinGoWhat.comPeople sure the heck wouldn’t have had a clue as to what I was and would have had to ask.

During my many years of dealing with Syringomyelia, this stupid disease does like to ‘trick’ me into thinking it’s better and then poof the next day WTH!  The only real ‘treat’ from it is a greater appreciation from all of what I DO have and those that have come into my life.

Syringomyelia - He Said, She SaidAs far as dressing up, my wife has helped me realize that I don’t have to cover up my pain nor ‘act’ normal… ok, I’m a bit weird in general.  🙂 Since being with her I’ve found more strength in accepting what I have and not having to hide from it or hide it from others.  It was a huge relief and she has made it much easier to deal with head on.  My wife wrote an awesome post called ‘Syringomyelia, Through the Eyes and Heart of my Wife and Caregiver‘.  I will continue to fight with the ‘trick’ being to continue ‘treat’ myself to life and happiness.  I truly hope that all of those that deal with this disease can and will do the same. 

One last thing, don’t let doctor’s try to ‘trick’ you into thinking that Syringomyelia is just in your head or the symptoms can’t be from it especially when there is evidence that they are.  Also, sometimes the best ‘treat’ments are the ones you find on your own.  Some of the ones I have found both beneficial and not so much can be found on my ‘Doing it Doc-cy Style‘ post.

BOO AND STUFF!!!


James 1:17 KJV Every good gift and every perfect gift is from above, and cometh down from the Father of lights, with whom is no variableness, neither shadow of turning.

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, Doing it DOC-cy Style

Syringomyelia Doc - 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’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, The 14 Day CBD Oil Experiment

Syringomyelia, The CBD Experiment - 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.

This experiment was for my own personal interest, hope for relief and a possible alternative to prescription meds in relation to my Syringomyelia.

Below you will find my daily log of observations for 14 days as it pertains to my physical and emotional wellbeing ending with my wife’s observations and my conclusion (product name and link where I bought it). 

I entered into this with a very strong disbelief and skepticism due to so many ‘promises’ and doctors missing the mark on helping me deal with my Syringomyelia.

These are my results and I am not suggesting anyone try the same path without consulting with your doctor first or at least research on your own and start out with low doses as I did.  Not everyone will have the exact same results.


Day 1 – I received the CBD Oil (Tube / Gel Form) at a high 43.5% potency late in the evening for my Syringomyelia.  Prior to taking this first dose, I was considerably fatigued, achy, painful back, and weak legs from a long work day.  I’m starting out with a low dose of about 1 or 2 mg that is placed under mytongue, twice a day.  I took my first dose at 7PM and at this point, nothing really feels different but likely won’t until in the morning.  I will take a second dose tomorrow.   This tastes horrible but tolerable.

Day 2 – I woke up this morning a bit sick but I highly doubt it was related to the CBD.  I noticed something interesting when I got out of bed for work.  My legs and knee don’t hurt which they normally do and have for a long time.  I took my second dose this morning and have continued without leg and knee pain all day.  We will see if this actually begins helping my back.  My third dose will be tonight.  I’m still very skeptical.   

Day 3 – It’s day three and I haven’t noticed a lot of big physical differences / improvements but I’ve also been a bit under the weather that’s unrelated to Syringomyelia.  I’ve still noticed that my knee and legs don’t seem to hurt but I’ve been resting because of the previously mentioned illness.  I believe I may feel a little less stressed and tense. Tonight will be dose five, so I’ll stay positive but likely remain skeptical.   

Day 4 – Well here we are and I still seem to have pain relief in my legs and knee and I have a little bit more control in them as well.  The less stress and anxiety is also a relief that is VERY welcomed and is helping.  Since I’m not noticing any notable back relief quite yet, starting on day five, I will be upping my dosage to about 5mg.  I was going to wait but the dosage range is 1 to 50mg and I started on the low range first. 

Day 5 – Today I woke to something quite unusual.  For a brief moment, I actually had full feeling in my legs for the first time in over 10 years.  It was very brief but it almost brought me to tears.  I still have no pain in my knee either.  I seem to have a little more strength in my legs as well.  The bad news is that I felt like I could push myself and strained a little and this caused my legs to become weak again, lesson learned.  This CBD oil isn’t a magic bullet but it seems to be possible relief.  I will continue tomorrow at the higher dose of 5mg twice a day.

Day 6 – There seems to be a bit of a difference noticed.  Don’t get me wrong, I’m not out of pain but I seem to be getting more comfortable.  Tension headaches seems to be far less and / or manageable.  Back pain is still present and the feeling in my feet has semi-returned and now I realize that my toe hurts… now that I can feel it.

Day 7 – I’m at 5mg still with the same minor differences noticed.  Some sensitivities where once numb or limited have returned and made things more enjoyable.  I may increase the dosage by a couple more mg twice a day to determine if any more improvements will be noticeable.  I’ve decreased my gabapentin from 2 pills to 1 pill a day, nearly no ibuprofen and no pain pills.  I’m not sure if this may be counter productive.  However, hip and upper leg pain is much less.

Day 8 – Well, I have to admit, the intimacy with my wife is becoming more enjoyable from a mobility and sensitivity perspective.  I know that this is likely TMI, but intimacy is a key bonding function for partners.  For the partner, they can enjoy something other than just taking care of you.  For the person with Syringomyelia, it allows for a moment of being normal and enjoy their partner.  I’ve increased the mg to 7mg’ish twice a day.

Day 9 – This weekend, I’m planning for some outings with my family and to do some physically intense activities as well.  This will be the real test to see if there is any real difference.  I have noticed that since I’ve been taking the CBD oil, if I hurt, the recovery time seems shorter.  I definitely no longer have the pain in my knee nor the numbness under it.  Tomorrow and Sunday will be the big days.

Day 10 – Today was a personal victory for me.  It’s been a long road these past few months of setbacks.  Today I spent time with my family on some light to medium hiking trails including rocky inclines and caves.  The last week or so have been a nice change.  There are many things I’ve been changing but one stands out more than others and I have to admit, it’s this CBD.  I’ve increased my dosage to about 5mg 3 times a day instead of 7mg 2 times a day.  It’s still VERY hard for me to believe.

Day 11 – I accomplished 2 very important personal challenges plus a bonus this weekend.  I hiked / explored with my family and push mowed my entire 3/4 acre lawn.  The bonus was that I’ve walked about 15 miles or 30,000 steps.  25,000 steps today alone.  Not bad for someone that couldn’t walk more than a couple miles a day over the past several months because of my Syringomyelia.  Thank you God, I believe!

Day 12 – Although my body was a little sore today, I was quite able to function.  The last time with the level of activity like this past weekend, it would have taken a couple of weeks to fully recover.  My hip was killing me yesterday and today but it wasn’t related to Syringomyelia.  I’m already nearly back to my ‘normal’.  Legs are good, back is better, I can feel my feet and my spirits are up.  On top of this my wife and I have enjoyed more and more time together as a couple and like a couple plus more intimacy.  I’m so glad she is patient with me.  This experiment seems to be going well regardless of my remaining skepticism.

Day 13 – Today there is not a lot of differences from yesterday.  However, yesterday was a very good day compared to several weeks ago.  Anxiety is lower, stabbing pains are gone, hip pain from the weekend activity is nearly gone, no head aches, increased feeling in my feet and more.  If this continues with the fact I’m only down to 1 gabapentin, no prescription pain pills and minimal ibuprofen…. I may just think this CBD oil has some real possibilities.  Tomorrow will be the final day of my experiment.

Day 14 – This morning, I realized that I’ve been waking up in the mornings much more refreshed and ready to meet the day.  I haven’t had to take sleep aids very often anymore which is exciting.  Today I’ve experienced far less pain and any pain that I have felt doesn’t really stick around long.  I have continued sensation in normally numb or near numb legs, stomach areas and chest. These last several days have been a very welcomed relief from the feeling of a downward spiral to disability.  What a great ending to this 14 day CBD experiment.  I will continue to use this CBD.


Michael and ChristyWife’s Observations – Since using this CBD oil, my husband seems happier and far more chipper.  He’s been getting up early in the mornings and sleeping through the nights where previously he was up and down quite a lot.  He also doesn’t seem exhausted before bedtime, we watch more ‘Everybody Loves Raymond’ and cuddle time is EXCITING just like it used to be!  You would almost think that we were honeymooners again with all of the physical activities, wink wink.  He is more active after work and doesn’t have to immediately rest trying to recover from long work days.  He is once again able to enjoy activities with my daughter and I.  Don’t get me wrong, Michael has always been strong and amazing but then he started struggling more but now my daughter and I have our Michael back.  I’m honestly very glad we found this CBD Oil and that Michael tried it regardless of him being so darn stubborn and skeptical.

My Conclusion – For me, CBD Oil is helping and at this point I can not deny it.  I am simply amazed by the differences.  My back, feet, legs, stomach, chest, man parts and other areas are doing far better than they where a few weeks ago.  Heck, I’m even poop’n regularly… HA!  Oh yeah, no side effects noticed like craving snack cakes and Doritos, laughing at trees, dry mouth, drowsiness, running naked after chickens, eating peoples faces off, etc.

I suggest consulting with your doctor and giving it a try might be worth your time.   Again, this is NOT a magic bullet and doesn’t ‘fix’ anything but for me it’s a much better alternative to all of the other crap doctors have been prescribing me.  However, in their defense, there simply isn’t a lot of knowledge on Syringomyelia.

I did several weeks reviewing companies to trust or not trust, product reviews, ratings and I finally found the product for my personal experiment.  The CBD Oil I’ve been using is by iHempCBD.  I purchased their gold version at 43.5%.  However, I have found that Palmetto Harmony works as well if not better and is FAR more inexpensive.  

Please be VERY careful ordering from any company because I ran found some companies that weren’t up to my standards.  This CBD Oil does not contain THC therefore it’s available in ALL 50 states.

I SIMPLY FEEL BETTER!!!

A big THANK YOU to my wife Christina for her support and Ty Colwell for helping put my humor to a graphic.


Philippians 4:19 ESV And my God will supply every need of yours according to his riches in glory in Christ Jesus.

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, Gimp’n Ain’t Easy

Syringomyelia, Gimp'n Ain't Easy© 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.

There is nothing easy, fun, glamorous, lazy, attention seeking or playful about Syringomyelia.  It’s truly exhausting both physically and emotionally.  For some it’s gradual but for me it was sudden.  It’s assumed that my Syrinx was caused by a trauma impact from falling down stairs.  The impact was full force with all of my weight on the thoracic section of my spine.

I have to admit, with my Syringomyelia, there are times that I think to myself that it would be easier to jump into a powered chair.  For me, and I know many others, gimping around simply isn’t easy nor fun. 

However, knowing how my mind works, I’d have to ‘upgrade’ my power chair with the following requirements:

  • Syringomyelia, Doc's Power ChairHigher horse power (No top speed / Highway capable)
  • Rollover cage equipped (Safety first)
  • Rechargeable with solar and / or old beer (Don’t drink and drive)
  • Mag wheels (with playing cards clipped on for that cool motorcycle sound)
  • 4 wheel drive capable (In case a mudding opportunity arises)
  • Racing stripes (Look fast and be fast)
  • Hydraulics (Just because)
  • Heated seats with enough room so my wife could ride bit….ting her lip
  • Transformable into a robot or something completely not ‘politically correct’ (Why not)
  • Hidden satellite TV with DVR (While waiting for stop lights)
  • High wattage stereo system with Bluetooth (No texting while terrorizing)
  • Built in cooler (For whatever)
  • License plate with ‘And Stuff’ (Everything is better with ‘And Stuff’)

The bottom line is if I have to ride, I’m going to do it in style since “Gimp’n Ain’t Easy”.

I could race around with a sign that would say, ‘This power chair is far faster than the help we need to fight these diseases’.  OK, actually the normal speed of a power chair is likely faster to be honest.

Syringomyelia, Doctor Not ListeningI definitely hate not being able to take off running after my daughter or wife without falling or hurting.  Please note:  They typically don’t try to run away because of the rope.  Ha! 

I continue to try to exercise, walk 5000 steps or more a day, stretch, etc.  Alas, even with trying, the doctors tend to ‘think’ it’s not enough.  This is why it’s so important to support organizations that are fighting for us with Syringomyelia or Arnold-Chiari Malformations.  No body wants to resign themselves to a power chair or bed but it is happening with minimal REAL support from the medical community.  On top of this, social support and employment support is as equal if not less.  Some of those organizations are on my ‘Is There Support?‘ page.

Again, I don’t take Syringomyelia lightly but I do take it lightheartedly.  It’s the way I cope because I will not let it beat me!

2 Corinthians 4:16 NIV “Therefore we do not lose heart. Even though our outward man is perishing, yet the inward man is being renewed day by day.”

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, 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, The Walk of Pain

Syringomyelia, The Walk of Pain - 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.

This will likely not be unfamiliar to those that suffer from the same disease as I do.  Syringomyelia seems to be a not so friendly life partner.  When I think everything is getting better and I go to sleep, I wake to do the walk of pain once again each day.  

Sometimes I wish my body was like Legos so that I could detach the parts that hurt.  However, stepping on one of those Legos would be an entirely different ‘Walk of Pain’.  I don’t know about you, but stepping on a dang Lego has made me dance a dance that I didn’t really know I knew.

Syringomyelia, Stepping On A LegoWhat’s so interesting is how similar that pain is between a foot being imprinted by land mine Lego and the daily pain of Syringomyelia.  The only difference is I don’t think Syringomyelia has ever made me dance unless jumping like a funky chicken or the seat comfort shuffle counts.

Syringomyelia, Mr Potato Head - SyrinGoWhat.comMaybe if my body could be like a Mr. Potato Head so that I could have interchangeable body parts.  That could work but with my luck I would end up with Mrs. Potato Head’s spud implants or find my shoes in my butt compartment.  That indeed would result in a ‘Walk of Pain’.  By the way, I’m trying not to visualize walking with butt shoes.  

Ok you might be able to tell that I’m a touch A.D.D… SQUIRREL!  I just wish my attention could be as easily lost on the pain when it’s bad.

Syringomyelia Searching For Answers - SyrinGoWhat.comMy wife and I have been finding some interesting options that seem to be helping some that include some muscle stretches, different sleeping positions (no longer sleeping on my stomach), CBD oil spray, turmeric spice added to foods, drinking more water, redusing sugar (not from my wife), reducing gluten foods, reducing any alcohol, reducing caffeine, reducing sodium, along with a couple of other things.  The weight loss seems to be helping as well by lowering the pressure and strain on my back or spinal cord.  All we can do is try, right? 

My friends, please don’t give up on yourself because God will never give up on you.

I pray each day that God gives me strength and relief and He does.  I thank God for my wife, daughter, family and supporters.   I continually pray and hope that a cure can be found for all of us.

Matthew 4:24 NIV News about Him spreads all over Syria, and people brought to Him all who were ill with various diseases, those suffering severe pain, the demon-possessed, those having seizures, and the paralyzed; and He healed them.

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

SyrinGoWhat.com © 2015 | All content from this site cannot be reproduced, rewritten or used in any other way without permission (this excludes the sharing of unedited versions on social media). You can request permission using our contact form - http://syringowhat.com/contact-us
%d bloggers like this: