Thursday, November 29, 2012

Quick...POTS!


 Seattle, WA, actual sign in the alley!


Stop, look, and listen! 
Stop, drop, and roll!
STOP ahead, POTS ahead!

Some days are just POTSy days...


Apple-flavored Pedialyte, hooray!



Peripheral Neuropathy is super annoying!




 Hospital stay for Dad-in-Lawesome means stealing
the leg-a-matron thing-a-majiggy,
help to get the blood moving in my arms again!



(Image source unknown)

May your POTS stop for you today, at least briefly!
xoxo
dani

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

Tuesday, November 27, 2012

Talking to the Doc about IV Fluids for POTS

Hey friends and fellow POTSies...

Are you thinking about IV saline for your Postural Orthostatic Tachycardia Syndrome symptoms? Do you have friends that get IV fluids and have you interested in taking the first step? Do you want to know how IV fluids can help POTS? Well, if you said yes to any of these, this post is for you! I am on the journey myself, and I thought I would share the process.

2010 marked the first year I had heard that IV fluids could be of help to someone who has POTS; a researcher that was presenting at the EDNF EDS Learning Conference spoke of her success with fluids and immediately I was interested. Unfortunately, my doctor wasn't. She said, with a stern face, "No way." I just let it be, as I had other things I was focusing on at the time, and forgot about it for about a year. Then I started my search into how exactly I could go about getting IV saline, and it turned out to be a long battle that is slowly resolving --- and, I might be on the saline train soon!

The quick summary: fluids can increase your blood volume, trick your body into thinking there is more blood, then your body stops freaking out and you feel better. Simple as that.

Here is all of the info I could gather to help you in your journey, or so you can follow along with me and see if it works before trying it yourself. I am happy to be your medical guinea pig (though, I am a willing participant and would never actually encourage testing on a little rodent)!

My two recommendations:
  1. Watch my video.
  2. Read POTSgrrl's guide on POTS and IV Saline. Seriously, her blog post will be your most useful tool, providing you info to bring with you to your doctor. 



Information you might find useful:


Enjoy and good luck!

xo
dani

Wednesday, November 14, 2012

Playtime at the Hospital: C1-C2 Instability

Thanks to Ohio State University (OSU) Medical Center's library, which unfortunately was made available to me as a visitor because my dad-in-lawesome was having emergency surgery, I was able to play with a model spine and make a quick video to briefly describe C1-C2 instability. Hopefully, this will give you a better idea of what I spoke about in my last post. I am still set to have the fusion surgery at the end of February. Until then, the doctor's written me a prescription to get a neck collar to wear when I am having stability issues or pain. I will be getting the Miami J Collar with the opening in the front, which will make it easier to wear since I have problems with things being tight around my neck. Until next time, enjoy your day and take a moment to pat yourself on the back for being such wonderful people. I am so thankful for each and every one of you - my readers.

 

Love, hugs, and autumn leaves! 
xo
dani