I started prolotherapy treatments in 2011. I have lost count as to how many I’ve had. I have learned along the way that prolotherapy is controversial in the world of EDS. The first EDS doctor I saw after I was diagnosed actually did not recommend it, although he admitted he did not know much about it. At that time, I was having a horrible time keeping my back and head supported without a neck or back brace. That doctor actually diagnosed me with cranial instability and sent me on my way with a referral to a spine surgeon, telling me he suspected the surgeon would determine that I needed a skull to C-3 fusion.
I left feeling discouraged but not satisfied. I wanted a second opinion; especially with a major surgery like the one that was brought up by the first doctor. This is how I ended up in Dr. Lavallee’s office. Dr. Lavallee was also very firm in his beliefs. However, they were very different. He believed that we should try everything we possibly could before letting someone fuse my skull. In his eyes, this included physical therapy, TONS of strengthening, OMM, and prolotherapy. This opinion was the one I personally felt made the most sense. It also made me feel the most comfortable.
So after seeing Dr. Lavallee I set off with the “homework” I was given. Dr. Lavallee highly recommended seeing Dr. Cantieri for a prolotherapy consult. He also did not know if I would benefit, having EDS, but he thought it was worth a try. He emphasized the importance of seeing someone with a lot of experience in prolotherapy. Although this would mean more traveling, and a lot more money out of my pocket, it was worth it to me to give it a try. In my head, I wanted to do everything I possibly could do to dodge the major surgery, AND to be able to hold my head up again without having to use my hand or a brace.
I saw Dr. Cantieri for the first time in January of 2011. I asked a million questions (surprise, surprise). He was honest with me. He did not know how I would respond because of my EDS, but if I was willing to give it a go, so was he. I told him I was “in,” so we came up with a plan. I would start Testosterone cream, which helps with the healing process, and I would come back in a few weeks for my first round of injections.
Well that first treatment was over two years ago. Today, this is how it stands:
- I have had injections into the high hundreds.
- I have spent a lot of money since insurance does not cover it.
- I started with treatments every 4 weeks. Now I am having treatments every 10-12 weeks.
- I have had injections in my hips, pelvis, arm, jaw, lumbar, thoracic, and cervical parts of my spine, and my neck.
- I have not worn my neck or back brace in over a year and a half.
- I have not had major surgery (knock on wood).
- I have found that prolotherapy treatments work best for me in conjunction with a lot of physical therapy.
- The treatments hurt, but it’s a weird kind of hurt. I definitely feel pain afterwards, but I also feel a stiffness that probably only us EDS’rs can really appreciate.
- I do not know how long I will need prolotherapy, but for me, it is worth it. If it means I will continue to be able to function and live my life, I will continue to have them.
So what exactly is prolotherapy?
I go to Corrective Care in Mishawaka, IN. If you visit their website there are great explanations. Here is a shortened version of what prolotherapy is, according to their website:
“Non-surgical reconstructive treatment stimulates the body’s natural healing ability to repair injured tissue and joints. The affected cartilage, ligament or tendon area is injected with a solution which stimulates the growth of healthy, strong new connective tissue that helps strengthen weak or damaged areas.. As the affected tendon or ligament grows stronger, the patient feels less pain and achieves greater strength and endurance.” ~http://www.correctivecare.com/ProlotherapyBrochure_PROOF.pdf
Further, on the Corrective Care website, there is a lengthier pamphlet that explains it much more in depth. You can get to it by clicking on this link: http://www.correctivecare.com/ProlotherapyBrochure_PROOF.pdf
Will it work for everyone with EDS?
The short answer is, I don’t know, and it is not my place to say. I am not a doctor. I can only share what I have found from my own personal experiences. I can say that for me, it has been worth every trip, every penny, and every bit of pain.
Has it cured me?
Definitely not. I still have issues with subluxations and dislocations, and overall pain. However, it has helped me enough to again, not have any major surgery, live a brace free life, AND a much more functional life; one where I feel healthier, more stable, and stronger.
Is Prolotherapy Enough When you Have EDS?
Not for me. It has been a huge part of managing my EDS, but I think that when you have something complex like EDS, it also takes so much more than just injection therapies. For me, it has also taken all sorts of other therapies, keeping as strong as I possibly can, lifestyle changes, and different management techniques ALONG with prolotherapy to live a more functional, pain free life.
I do feel very strongly about this, and I feel like it is worth mentioning: There is no ONE way to treat EDS, POTS, or any other chronic illness. There is only YOUR way. Prolotherapy is one way that has helped me.
You can also find all my other prolotherapy posts by clicking the subject, “Prolotherapy” on this website. If you have any other questions, I would love to try and help. You can either email me at firstname.lastname@example.org or message me on the Life as a Zebra Facebook page and I will do my best!
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