Tag: Worldwide Syringomyelia & Chiari Task Force

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

Confused about Syringomyelia treatment -- SyrinGoWhat.com

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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)

Syringomyelia is NOT a walk in the park!

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)