Right away, I knew I was in for a good appointment; her down-to-earth demeanor and willingness to discuss my concerns with regard to EDS and prolotherapy made quite an impression on me. We chatted about the idea that prolotherapy might not work for someone with Ehlers-Danlos Syndrome, at all, or it may work for a while and then eventually the tissues would be back to their normal stretchy selves and I would be back at square one. She talked about other patients she sees, with success, who have EDS, so she was familiar with the concerns and she was understanding of my apprehension. In the end, I decided to move forward with the controversial treatment and had my first session after the consult. The winning straw: she only is charging me $180 a session! I will do one session a month for four to six months, then we will reassess.
In case you have forgotten what prolotherapy is, my doctor, Dr. Boone, has a great handout:
"What is Prolotherapy?
Prolotherapy is a simple technique that stimulates the body to repair a painful area when the natural healing process needs some assistance. It involves the treatment of two specific kinds of tissue: tendons and ligaments. A tendon attaches a muscle to the bone and aids in movement of the joint. A ligament connects two bones and aids in the stability of the joint. A strain is defined as a stretched or injured tendon; a sprain, a stretched or injured ligament. Once these structures are injured, the immune system is stimulated to repair the injured area. Because ligaments & tendons generally have a poor blood supply, incomplete healing is common after injury. The incomplete healing results in these normally taut, strong bands of fibrous or connective tissue becoming relaxed and weak. The relaxed and inefficient ligament or tendon then becomes the source of chronic pain and weakness*.
Prolotherapy involves the injection of a solution generally consisting of dextrose, lidocaine (an anesthetic), and vitamin B12, which causes a local inflammatory response. This localized inflammation triggers the body's own healing cascade, resulting in the deposition of new collagen**, the material ligaments and tendons are made of. New collagen shrinks as it matures, tightening the structure that was injected and making it stronger. The resulting ligament & tendon tissue can be thicker and stronger than normal tissue, up to 40% stronger in some cases.
A typical prolotherapy treatment plan involves 4 to 6 sets of injections, done in series. Anywhere from 3-10 sets of injections may be necessary depending on the complexity or chronic nature of the problem. Each set is done 2-4 weeks apart and may involve the injection of several different sites around the joint being treated. Prolotherapy has a cumulative effect; each treatment builds on the previous one to increase tissue strength and improve joint stability. Over time this will lead to the desired effect of pain relief. You should not assume prolotherapy will not work if you do not see benefits after 1 or 2 treatments. In some cases, because of nutritional, metabolic, or hormonal abnormalities, your body may not be able to mount an adequate healing response. If you do not experience any improvement in your symptoms after 4 treatments, chances are you will not respond to prolotherapy and additional treatments are usually not recommended. Once a plateau in improvement is reached, treatment will stop."
*All of my tissues are relaxed and weak.
**The controversial part of the treatment for EDSers stems here: will creating more faulty collagen stabilize the joint or not?
Why? What made me decide to move forward?
The pain has been so bad. Period. I am willing to try anything, at this point. I am looking at it like this: for a while I was spending $200 a month on massages. Every week I would go in, pay $50, and get my entire body massaged. I would leave feeling rested, relaxed, and nice, but by nightfall, I was back at the same level of pain as before the massage. The benefits that I felt were very short term. I know there were benefits I didn't see, like flushing my body of toxins, but I am so strapped for cash that I have to make the most of my money. I wasn't getting relief worth the money. So, I stopped going. I am no more worse for wear.
I am looking at prolotherapy in the same light: I will go once a month, pay $180, and get injected. I will leave no worse for wear (besides the injections being painful), as prolotherapy isn't thought to do any long-term damage, unlike the steroid injections I was also contemplating. If it doesn't work, then I am the same. If it does work, brilliant. If it only works for a year or two -- that is a year or two that I will be in less pain, and I will take that happily. If I have to do four to six months of prolotherapy every couple of years to keep my chest in check, to me, that is worth it. I am desperate, at this point, but not stupid. I understand the risks, I understand it may not work, and I am willing to give it a shot. Well, ten, actually.
The doctor used a mixture of dextrose (sugar water), lidocaine (to numb the area), and vitamin B12. She injected each side of my sternum, vertically, five times, for a total of ten injections. It was rather painful, just as painful as the epidural injections, but also was creepy because of the sound the needle made breaking through the tissue. Because of my weight (I am thin/average) and the location, she wasn't concerned about placement being an issue, and she did the injections freehand. If I were overweight or the prolotherapy was going to be done in a different area, I may have sought out a doctor who did prolotherapy guided by x-ray, but she assured me that it was unnecessary. We could have used her ultrasound machine, but she could see what she was doing in my bony chest well enough.
Lots of love to you all.