Category: Spinal Web

Syringomyelia is NOT a walk in the park!

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Syringomyelia is not a walk in a park© 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.

For some reason there are a lot of doctors that under value a person’s statements when it comes to pain related to Syringomyelia.  Much of this is likely from the nation wide abuse of pain medications and the Obama Care requirements on physicians.  No I’m not making this political, I was actual told this by more than one physician.  Doctors are having a hard time juggling quality patient care and increasing the patient numbers they see to be able to stay in business.  This seems to result in doctors not taking the time or being able to take the time to listen and / or learn about Syringomyelia.  This means they really can’t work towards helping increase the quality of life for patients.  

Some of my many personal experiences with doctors have included:

  • Here take this for a couple of weeks and you should be ok after that.  
  • You should stretch and excercise more and you should eventually not have pain.  
  • If the pain is still there after a month of rest, we can temporarily kill the nerves in your back using injections.  (With already having a loss of sensation along with muscle control issues, this doesn’t seem like a good idea.)
  • The Syrinx in your Thoracic wouldn’t cause problems in your legs, we should work on your lumbar spine.

Syringomyelia is like walking in deep mudWell this is all just quick / short-term “fixes” that don’t really solve anything.  For me, Syringomyelia is NOT just a walk in the park, it’s more like a walk in thick mud!

Fortunately, an organization called Worldwide Syringomyelia & Chiari Task Force put together a Model of Care that that you can provide to your doctor or a doctor can download.  Let’s all help educate doctors and help them help us.  They can’t know everything… none of us can.

Jeremiah 29:11 NIV For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope.

Please feel free to send me your thoughts using my contact page. — Michael Doc Davis (SyrinGoWhat.com)

Is it or is it not from Syringomyelia?

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Confused about pain related to Syringomyelia© 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.

Some of the suckiest (likely not a word) things about having Syringomyelia is that it’s difficult to know if what is going on with your body is related to it or not.  Since Syringomyelia affects your nerves and the muscles controlled by them, one can confuse a byproduct of the disease, something directly related to it or not related to it at all.  An example would be your back causing leg muscle weakness making you not walk in the way your body is designed causing your knee to hurt.  Once your knee hurts, you walk less and this causes muscle atrophy which causes more pain.  This type of knee pain and muscle atrophy wasn’t directly caused by the disease.  There are even times that side effects of the medications I have to take resemble symptoms from the disease.  With that being said, medications are not always the answer.  It gets easy to blame Syringomyelia for everything that hurts or doesn’t work right but I’m starting to realized this isn’t always the case!  I will continue to push myself, exercise, stretch, and work hard to walk properly.  Don’t get me wrong, Syringomyelia causes a lot of issues mentioned on the ‘What is it?‘ page.  This is NOT a disorder, it IS a disease that has NO cure but I will NOT just accept ‘It is what it is’ and I WILL live and love my life.  The lessons learned for me are that not everything is what it appears to be and always think more broadly than what your doctor will. 

Please keep everyone that is suffering from this and other diseases in your prayers.  God listens and God heals!  

Exodus 23:25 NIV “Worship the LORD your God, and his blessing will be on your food and water. I will take away sickness from among you,”

Please feel free to send me your thoughts using my contact page. — Michael Doc Davis (SyringGWhat.com)

Life’s little victories over Syringomyelia

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LifesVictories© 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.

Life’s little victories for some are not the same as it is with others.  As a person with Syringomyelia these victories for me come in the forms of being able to wake up in the morning, lift my leg or legs to take a step, have a few seconds without pain or a moment when I can feel a part of my body that I haven’t felt in some time.  I count myself lucky.  There are some in much worse situations than mine that are just happy to be able to breath, not have a headache for a full day or even a few minutes or knowing when they need to use the bathroom.  Although I have been handed a deck that is stacked against me, I still feel blessed.  This could be far worse but God is working to keep my disease in check.  I thank Him daily and I do not blame Him.  For more on my story on how all this craziness started, just look at the about page on this website.

I thank you all for your prayers and love.  Keep smiling and laughing my friends.  Life is entirely too short not too.

Deuteronomy 28:2 NIV “All these blessings will come upon you and accompany you if you obey the LORD your God:”

Please feel free to send me your thoughts using my contact page. — Michael Doc Davis (SyrinGoWhat.com)

Syringomyelia Caregiver Quick-Tip Pocket Guide from wstfcure.org

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Here is a great Caregiver Quick-Tip Pocket Guide from WORLDWIDE SYRINGOMYELIA & CHIARI TASK FORCE INC.  This organization is a wonderful group of people helping all of us and providing ways for us to connect to each other.  They are the first organization in the United States led by nurses and physicians to stand behind Syringomyelia as a disease!  There are lots of other materials such as this on their website — http://www.wstfcure.org.

Here is a great Caregiver Quick-Tip Pocket Guide from WORLDWIDE SYRINGOMYELIA & CHIARI TASK FORCE INC.