I've followed the thread of your story. It makes me very sad when I see stories like this, because I think things like this happen in Medicine more than we realize. But it is not limited to "experimental procedures" like prolotherapy. Every day doctors are making guesses and most patients don't understand that the "science" of medicine is about as far from an exact Science that one can get. Almost always doctors are guessing, and it has gotten worse over time with managed care as costs are cut and time is limited so greatly. Doctors make rash guesses, and sometimes this costs patients dearly. Add to this that so many of us are raised to believe that these doctors are infallible saviors and experts on everything. We have this culture of not questioning our doctors and believing them at their word. When a doctor tells a patient something, even if he or she words it cautiously, the patient often mistakenly thinks that the doctor is telling the gospel truth. More oft than not the doctor is making an educated guess, and even more often they are limited by what they've studied, the tools in their toolchest, and very few are well equipped to deal with complex patients. Well, it becomes very unethical when doctors begin practicing incompetently, and we, as patients don't full understand that what they are doing is ill-informed or sometimes downright stupid.
After reading your story, I am appalled about what you had to go through. There are 2 places where you have gone wrong (at no fault of your own): 1) You trusted your doctor to follow the hippocratic oath of "do no harm" (and you should have been able to, but clearly he did a lot of harm); 2) You have attributed in the title of your post and in some of your posts the pain and anguish you have suffered to a procedure called "prolotherapy", when in fact standard prolotherapy had absolutely nothing to do with the problems you've experienced. This is important to clarify. You did not receive actual prolotherapy. What you had done to you was NOT prolotherapy. What you had done to you was a very unethical, disgusting and hack procedure that used needles, but aside from that NOTHING in it was similar to real prolotherapy. You had a very incompetent person butcher and injure you, basically. I am disgusted if this person is still practicing. I do think that not only should you sue him, but you also should take this to a medical review board, because he is not practicing medicine. He sounds like a thief to me. He should not have a medical license, and if he continues to do this he should be arrested. Doctors like him ruin important procedures for EVERYone, and that is a crime.
So who am I to make such strong claims? Am I a doctor? Nah, I'm just a patient who has become impatient with bad doctors. I have a condition that they simply call hypermobility because what is actually wrong with me is so severe and so rare that there's not really a name with the pathological version of it, at least not one that anyone has told me.
Initially I simply had multiple diagnoses: migraines, a spiral fracture of my ankle with severe arthritis, severe back pain, and chronic pain. The pain in my body had gotten so severe that I was vomiting every day from the pain for several months. I went to so many doctors, surgeons, etc, and pain clinics. I tried every medication. They explored the possibility that the pain was "all in my head". It was not until I found an amazing physical therapist that she was able to point out to my doctors that "Look, every time I ask her where her pain is, she points to a spot, and I check the spot she points to, and her spine or ribs are rotated, out of place or dislocated right where she points. There is a good reason she is in pain." Once I finally had this support, they were able to put everything together. My head hurt because my neck and shoulders were dislocating and subluxing. My ankle had fractured and developed severe arthritis and was way more painful than usual because my ankle joint was too loose and would move around unnaturally. My back hurt because my spine and ribs were constantly out of place. The rest of my body hurt too because when everything is out of place, my muscles would lock up in response.
Having a diagnosis was nice, but sadly it did not fix things for me. The only cure was strength. I needed 10x the strength of a normal person just to keep my joints in place. The problem was, by then I was so week I couldn't get out of bed. Further, I couldn't strengthen muscles around dislocated joints. I certainly tried my best. But... my joints went out EVERY day. This caused me pain, which caused me to vomit. This meant I had to stay in bed, which made me weaker. This meant my joints dislocated more, and you can imagine that this cycle was not an easy one to stop... especially when a task like opening a door was enough to severely injure me and land me in bed for days. At my lowest point I became so dehydrated from the vomiting, my muscles all seized and I collapsed on the floor. I was alone in my apartment and not near my phone. At that moment, I was almost certain I was going to die, and most of me welcomed it because I just wanted it to end.
Well, I didn't die, thankfully. I survived. And I got a little better after I met a doctor in Integrative Medicine. He looked at my whole body and whole situation and made sure that my multi-disciplinary team would all do what I needed in concert. Then one day we talked about me getting prolotherapy on my spine and ribs. Injections there scared me some. I already got bi-annual injections into the center of my ankle joint, and they were painful and not easy. However, the pain I suffered was so great every day, that I was willing to do just about anything to make it stop. We talked about the procedure, and what it entailed. Blueduck had the best description I saw in your thread: http://curezone.org/forums/fm.asp?i=423183
It is glucose and water. Sometimes a doctor will add a small amount of lidocaine or novocaine to numb the area and decrease the immediate pain of the procedure. When this happens they hurt little more than acupuncture or any other regular shot, though for pain patients pain is very relative. It is extremely safe, especially when you compare it to surgeries or other procedures to fix similar issues. The needles are not very large. Yes, they do go exactly where the bone and ligament meet. Certain joints and uneducated doctors may require X-rays or sonogram, but because of the location of the injections (where they are supposed to be given anyway), there is no risk of slipping into nerves. They go in areas where nerves are not present. They also are supposed inject in directions that make it impossible for the needle to slip. A doctor can find the exact right spot to inject by touch, quite easily, and the fluid just naturally goes exactly where it is supposed to go. They do cause a healing reaction. This is the most uncomfortable part of the procedure. They are extremely helpful if you have loose joints and that is what is causing the pain. When the injections start to work and cause their healing reaction, your ligaments reactively tighten around the joint, and turn a loose joint into a stable joint. This, without any surgical alteration.
I did not know until I decided I wanted the procedure and started talking about what to expect, but my doctor was a resident prolotherapy expert. He has done tens of thousands of injections, and in fact travels every year with a group of doctors to central america as part of a charitable organization to provide these cheap and simple solutions to people who are in great pain, but who cannot afford to see doctors normally. During this expedition, each doctor performs several thousand prolotherapy injections.
When we speak of the risk / cost, I asked him what could happen to me. "Of course there are risks with any procedure," he says, "But in all of my years doing this, I've only seen one person have a somewhat moderate reaction to the procedure. We performed around 40 injections for her spine. I gave her all the instructions for care and told her to take it easy. Instead of following them, she decided to go help her friend move all of her furniture from her apartment. She called because her joints had swollen and were red and irritated and painful. She went to the emergency room, and they gave her tylenol. The swelling went down and she was fine." Well, this risk I could manage.
I had my first series done around a rib in my chest that popped out predictably every day. After the first injections it never popped out of place again.
My second and third series were done on each side of my mid back. My mid back was my weakest and most painful place. Within 10 days of the third series my pain in my mid back had reduced 95% and it is now one of the most stable sections of my back. My fourth series was done on my upper back, shoulders, neck, and the base of my skull. This helped the stability there immensely as well.
I am now fighting with my insurance company to start a new series so that I can have the lower half of my back done. They approved the first four, but are making me start over again and appeal. They say, it does not matter if it is effective for me, or if it is cheaper or more cost effective (I pointed out that I have to go to the doctor much less for pain and that my chiropractor visits have cut in half). The only issue for them is that it is still considered experimental and they exclude it as a covered benefit. Great logic for an HMO, right? This is only one of the many reasons why our health care system fails, but I'll try to stick to the point.
Hon, I am sorry to hear of your suffering. I am really sorry your doctor was an ass. You did not have prolotherapy. He lied. You had cod liver oil and zinc injected? I have no idea how that constitutes anything resembling prolotherapy. He used giant needles. Well no wonder why. He's injecting ridiculous viscous materials into your body. If he was doing REAL prolotherapy he could use little needles. He didn't give you any numbing OR pain management PROACTIVELY. Well that's just idiotic. ALL of the research on pain shows that the best way to control a patient's pain during a procedure is to never allow them to feel the full extent of the pain. So you numb it, and you give painkillers in advance. You don't wait until the pain is screaming to give painkillers. Once that nerve pathway to pain has been connected it is so hard to break, and you have to do so much more to reduce the pain. And I'm sure you have no idea what he was supposed to do, because he was a douche and he lied. But I'd venture to guess that he also didn't inject in the right places, or do it safely. So yes, maybe he did cause nerve damage. But again, not because you had prolotherapy... because your DOCTOR was a huge tool, and a hack, and should lose his license.
I am not sure what is causing your pain. I am not sure what could help you or what is available where you are. I am so sorry that so many people go through types of things that you do. It makes me grateful that despite all of my suffering and pain that I have found the right people. But... if you have any questions about pain, real prolotherapy, pain prevention, joints, other injections, or ESPECIALLY integrative medicine, please feel free to email me. I hate to see other people suffer. I will do whatever I can to help you find someone who is not a hack to help you using whatever means necessary. All I ask in return is that you reframe how you talk about what happened to you and not misinform people about the dangers of "prolotherapy"... rather caution people about the dangers of procedures being mis-labeled as prolotherapy, and bad, unethical, incompetent, douchebaggy doctors. As much as I want to help you, I know first hand what real prolotherapy can do for people who have conditions like mine. Certainly it is not something for everyone. It will not help every condition. It can not fix everything, nor is it magic. But, it rarely causes any substantial harm, and not at all long term if done properly. On the other hand, it has the potential to make a drastic positive difference for certain people. This is my philosophy on my prolotherapy procedures (especially considering how much pain I WAS in every day) -- the day that prolotherapy hurts more and causes me more discomfort than it actually cures, that's the day I'll know I no longer need it. And I think that is why not everyone should get it. It does make you sore, yes. But if you're in lots and lots of pain EVERY day, what is a little soreness compared to that? It's nothing. It's a tiny bruise. It's a gnat buzzing around relatively. If you have reservations because you think, oh those little needles might hurt, then that's a really good indication that you DON'T need it. But me, the pain of the procedure is nothing compared to my normal pain... and then a few days later I feel years younger. I feel like a new person, and I can do things that I had not been able to do for years. All that from a few days of soreness. Is it worth it? For me, damn straight!
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