Wednesday, November 28, 2012

A Ton of Bricks Sit Upon My Chest

I've been having very bad chest pain...



The ortho and I have discovered that I have too much motion in my sterno-costal region, the upper portion of my front rib area, and it is causing severe pain. While we aren't quite sure what to do to ease the pain, we are looking into several options; one being prolotherapy.

Prolotherapy for Ehlers-Danlos Syndrome is very controversial. To explain what exactly it is, I will refer to the notes I took from a lecture by Dr. Scott Greenberg at the 2010 EDNF EDS Learning Conference.



Curing Chronic Pain with Prolotherapy **Controversial in EDS treatment**
Lecture by Dr. Scott R. Greenberg

Hipocrates – thought to be the 1st person/doctor to use prolotherapy (created by scarring tissue via hot pokers).

Prolotherapy:
  • A series of injections that stimulate the immune system to cause the PROLIFERATION of new ligament, tendon, and joint tissue.
  • Importance of Tendons and Ligaments:
    • Provide joint strength
    • Provide joint flexibility
    • Provide basis of range of motion
    • Relay info to the body about a joint’s position
    • Send signals to the brain regarding joint damage in the form of pain
    • Refer pain in a similar fashion as a nerve
  • Ligaments and tendons will usually not heal on their own when they are more than 6 weeks old
  • Prolotherapy is not usually covered by medical insurance.
  • Prolotherapy is a long-term cure. *according to this doctor*
  • Prolotherapy – joints heal/regenerate better than the joints one is born with.

PRP (Platelet Rich Plasma):
  • Different than prolotherapy
  • Only used on worst joints because it is expensive
  • Concentration of platelets, growth factor and plasma made from your own blood.
    • Works faster than Prolotherapy but causes more pain and inflammation, soreness, and is pricey.
Can use both Prolo and PRP:
  • Usually can inject PRP in joint and Prolo around joint.
 Wide range of treatment times:
  • Some people require just a few sessions, other require 1+ years of treatment.
(Pain is in entire sad area.)

Some additional information I found:

  • A video by a doctor that does prolotherapy on EDS patients (it is important to note there are positive and negative comments below the video, all of which I am taking into account). 
  • A first-hand blog entry from an EDSer (bubblegirl) who had positive results with prolotherapy.
  • A very long chain of comments on the Inspire forums (EDNF) wherein most people have negative views of prolotherapy, and the EDNF staff doesn't recommend prolotherapy because there isn't enough evidence to back it up.

In conclusion, I am a bit confused and not sure the route I will be taking. I talked to Dr. Brad Tinkle about prolotherapy and he recommends trying everything else possible before attempting prolo, like splinting/bracing and taping. Unfortunately, I can't do tape and my ortho has no options for bracing that area. Dr. Brad did mention that it would be more likely to work in the area I am having issues (sternum), because, like the tailbone, it is an area that isn't supposed to have a lot of motion. He made it seem like prolo wouldn't be a particularly good choice for an EDSer on a joint that has a lot of motion, like a knee. While I am still toying with the idea, I am leaning toward not doing prolotherapy right now. It is expensive, painful, and there is not enough proof that it will work for my liking. For now, I am scheduled for a session but I am just letting it sit with me for a bit...I may be cancelling the appointment.

xo
dani

3 comments:

BubbleGirl said...

I say go for it! But I would, since I'm one of the ones with positive results. I'd also say, make sure the person doing the injections does them guided by ultrasound, instead of free-handing them (it's so much more accurate that way).

I've written a letter to my provincial health minister, and they're actually going to do a study looking into "the role of prolotherapy in muskuoskeletal disorders" so more inforation should be available in the near-ish future.

I wish you the best of luck in finding some relief!

Farmer'sDaughter said...

Hi!

I am currently a patient of Dr. Greenberg and have EDS and before I saw him I had so much pain throughout my entire body that I was ready to give up and die. I was told my head was about ready to fall off my shoulders and I have had severe pain in my chest, tailbone, severe and debiliating migranes and headaches as well as pain throughout my entire body from head to toe. Now I can confess that prolotherapy works. Medical doctors do not want to admit that it works while it may not get rid of 100% of the pain it helps. No I am not cured but this does help as my pain is reduced significiantly. At least now I can live my life fairly normal without that debilitating pain. So I say go for it and you will not be disappointed!

P.S. It is not that painful and I I hate injections. Also I am not the only one in my family that is now a patient of Dr. Greenberg.

Remember all you have to fear is fear itself.

Anonymous said...

I get this pain too, and have EDS. It took me years to figure out that it was my art/painting that was setting it all off. Now I lean on a stick with my brush hand, and this takes the pressure off the sternum and greatly reduces the inflammation and pain. Perhaps this is the cause for you too?