Tag: joint replacement

The Cocktail: Where Things Stand

We’ve gone over all the current ingredients to the arthritis cocktail, now to a bit of discussion on where things stand.

Last Wednesday, I met with the new rheumatologist. According to various surveys, she’s either one of the top 5 or the top rheumatologist in the state. I saw a bit of ego and she clearly doesn’t hold with supplements or with trying to get into clinical trials. Her contention is that the current cutting edge is not going to be able to regenerate the cartilage in my right shoulder.

She could be right. It depends on a host of factors, including if the stem cells, ECM, and other factors can find something to latch onto or otherwise cause them to grow into cartilage. Supplements, as noted in the previous writings, work on at best one third of the population, with a number of them clocking in at less than ten percent — by themselves.

Part of the reason I chose to do a cocktail for my experiment is that while individually the rate of effectiveness bites, one can potentially gain some synergistic effects by using a cocktail. It’s worth a shot.

One thing she doesn’t yet know about me is that to some extent, I don’t care if I get a perfect fix. What I would like to do through my experiment and by possible participation in research or clinical trials is make it more effective for others in the next iteration. I will take whatever relief I can get, but the important thing is advancing that cutting edge for the future.

As of now, I’ve been on the main component of the cocktail for almost six weeks, and the current full cocktail for almost four weeks. To get a fair assessment, it really is going to take three to six months. That said, here’s where things stand.

First, I had blood work done last Friday that shows that, for now, the supplements do not appear to be causing any problems. I wasn’t thrilled with a couple of readings, but they are still well within the proper zone. Remember, if you take supplements you do need to keep your doctor in the loop. Some supplements can and do effect other medications and can have some harmful side-effects. Be smart, do your research, and keep your GP and/or others in the loop.

Second, while it is tentative at this point, I do feel somewhat better, particularly in areas other than the shoulders. My left shoulder feels a bit better than it did, but that area is particularly hard to assess.

Part of the problem in assessing things is that there are a lot of questions right now. One of the first and foremost to my mind is if what I have is simple osteoarthritis. It’s not acting like it, and while past testing said I did not have rheumatoid arthritis, that doesn’t mean I don’t have something similar to osteoarthritis but is a step above. There are some possibilities.

There is also a good chance that something else is at play on top of the osteoarthritis if that is indeed all I have. It could even be more than one thing. Right now, everything from MS on down is on the table. That’s one reason I gave up seven vials of blood last week for testing, along with getting a host of X-rays. To be honest, I fully expect to undergo more tests.

That said, sometime in the next two weeks, I should have results and hopefully some answers to go with the questions. It is likely that we may even have more questions. But, if we can start eliminating possibilities even as we search for some definitive answers, it’s a good start. If we can figure out what (all) is going on, it gives a good place to start to do something about the problem.

Until we do, I am resistant to the idea of joint replacements for all the areas identified by the surgeon and the rheumatologist. On the shoulder, I’ve yet to speak to anyone who has had the operation who would do it again. Would love to hear from anyone with a different view. On the other replacements, as well as the shoulder, I’m concerned that whatever is going on could effect the quality and longevity of the replacement. Yes, if I didn’t mention it before, the rheumatologist has suggested additional replacements are needed beyond my shoulders.

So, are the supplements helping? Tentative yes. Do we know what is going on in my body? No, but I think we are starting to have some good questions and getting data for some answers.

That’s where things stand for now. More soon.

Why Not Replacement?

Given the large number of people who have had successful joint replacements, why not go with the surgeon and have my right shoulder done immediately? Good question.

Unless it is an emergency, I think it always better to take the time to review options, get second (or more) opinions, and make an informed decision about any medical treatment. Remember, the person ultimately responsible for your health is you, and it is incumbent upon any responsible person to be informed and to make informed decisions.

In this case, there are several factors at work.

Back the second time I worked for NASA (as a contractor), I worked commercial space research and as part of that worked with the Center for Commercial Applications of Combustion in Space. The team there was working with partners on advanced bone replacement materials. The problem with the implants then (and it applies to current day as well) is that they are solid chunks of metal or other similar materials. Natural bone may be smooth on the outside, but inside they are quite porous. Thus, you have density and mass differences that can and do affect the system on a mechanical basis. The stem of a replacement has to be glued in place, and that has caused problems on occasion.

The work CCACS was involved with produced a metallic/metallic-ceramic replacement that was smooth where needed, and had a porosity effectively equivalent to natural human bone. The research was focused on how to get the same results on Earth so that custom replacements, as close to identical to what was being replaced as possible, could be produced on Earth in the OR. Since the reaction was exothermic, the replacement parts would be sterile.

The truly advanced work, however, was focused on developing materials that would serve as a scaffold for natural bone to grow. As the patient’s bone grew into it, the replacement would dissolve and pass out of the body until after a period of time the patient was left with natural healthy bone in place.

There is a good bit of research underway (see here for one example) on advanced materials. Such advanced materials are needed because of a different area of medical research: regenerative medicine.

Regenerative medicine uses things such as stem cells, the extra-cellular matrix, and even some genetic manipulation to heal. In fact, using regenerative medicine, it is possible to not simply heal, but to restore a site, organ, limb, etc. to what it was before. Ultimately, they are looking at being able to regenerate limbs, organs, and other structures. To call it an exciting field is an understatement.

While separate, regenerative medicine ties into a variety of anti-aging research. This research focuses on restoring the body to the cellular conditions of youth.

Now, having worked with such research at NASA, and having had the honor of working with the late Leslie A. Geddes at Purdue — who pioneered several fields of biomedical research including regenerative medicine — I’ve been keeping a bit of an eye on such things. As Glenn Reynolds the Instapundit often notes, “Faster, Please.”

And I do want to see it faster, much faster, please. Based on current research, and even allowing for the FDA approval system that seems designed to prevent advances and competition, I believe I have a good twenty to forty years of life ahead of me barring something catastrophic. Which gets back to the current state of joint replacement.

Current materials are not designed to take advantage of future advancements. Nor are they designed for the life of the patient. The sad fact is that for many types of replacement, you can count of having to have the replacement replaced about every fifteen to seventeen years. So, at least two if not three replacements.

I would also note that because of the issues connecting bone with replacement, I would be limited to picking up no more than 15 pounds at a time, not have full range-of-motion restored, and face other limitations on activities. This would include many things I enjoy doing. Add in that at least two people I’ve talked to who have gone this route would not do the replacement over again, well…

So, I could opt for immediate replacement with parts that are close/semi-close to the size of my bones and will limit my activities because of the mechanical and other differences. These parts also are not designed to work with near-term or long-term advances in medical treatment; but, the replacement would reduce (though not necessarily eliminate) the pain in the joint and prevent further damage.

Or, I can opt to wait and experiment. The experimentation is potentially two-fold.

The first part is to try a supplement regimen that could slow, or even stop, damage not just in my shoulders but my entire body. Such a regimen has reportedly resulted in healthy regeneration (to some extent) in some patients. The odds, as I understand them from medical research, are long. I’ve faced some long odds in life before, it’s worth a shot.

The second part is to research clinical trials in regenerative medicine and advanced bone replacement materials. If I qualify for one or more regenerative medicine trials and participate, then I have the potential for at least partial restoration if not full. Add to it the fact that by participating I can help drive things forward faster please, even if it does not help me, then it’s still a win.

If regenerative trials don’t work out for whatever reason, then I will look to advanced bone replacement materials trials. If I have to have a replacement, why not go for one designed to take advantage of advances in medical technology?

Meantime, I’ve lived with chronic pain for years, decades even. I don’t like it, am working on dealing with it, but can handle a bit more. So long as I minimize damage to the shoulders and other joints being attacked by arthritis, I can and will put up with the additional pain.

That’s it in a nutshell, and there are several areas that can, and may be, explored in greater detail later. However, for now, it lays out the base case for my decisions.

What Is Arthritis?

Actually, that’s a very good question. It’s one that I wish I had asked a long time ago.

The term arthritis actually refers to more than 100 different types of arthritis and related conditions. The two most commonly diagnosed types of arthritis are osteoarthritis and rheumatoid arthritis. While arthritis primarily involves joints, certain types can also affect major organs.

The damage to joints can be mild to wild. On the milder side are stiffness and soreness. On the wilder side, the cartilage can be completely destroyed and the bones of the joint damaged both by inflammation and by rubbing against each other.

There are a number of factors that go into arthritis, from family history to injury. Even infections can result in arthritis in joints. In my case, some things I was exposed to as a small child put me at a higher risk of inflammatory problems. Add to that my having done things like jumping out of planes, rappelling, and other activities and you get a good chance of developing arthritis. And bone spurs.

In my case, it would appear that something has caused my osteoarthritis to become very aggressive in my shoulders. So much so, I’m going to be asking the rheumatologist I’m seeing in January if that diagnosis needs to be refined.

The X-ray of my right shoulder shows that the cartilage is gone; the bone ends look like the lunar landscape (with some small bone spurs acting as mountains); and, a chunk of my humerus is missing. That missing piece is most likely the piece of bone seen trying to work it’s way down towards my chest. The left shoulder looks better, but not by a huge amount.

There are a number of treatment options for arthritis. For my “just” osteoarthritis, I’ve been taking a drug called Meloxicam for the past three years off and on, and it has helped with some of the inflammation and related issues. Looks like more may have been needed. In addition to my shoulders, I have symptoms starting in my back and neck.

In the experiment I am starting, my goal is to do all I can to help my body heal itself. The best outcome is that through what I do is to reverse the damage. The middle-case outcome is that I help as much as I can on the shoulders, and slow or stop progression elsewhere in the body. The worst-case outcome is that over the next six months I generate very expensive urine courtesy of the supplements and things continue as they are.

The odds are not good. In fact, I’ve been told that the odds of any one supplement working on my condition (and with my genotype, etc.) is less than ten percent. That said, if I don’t make the effort, I will never know if anything could work. There is also the fact that by taking multiple supplements, I run the risk of side effects. To help reduce that risk, I’m keeping my primary care physician aware of what I’m taking and will be requesting some extra blood tests to be sure I’m not causing problems rather than fixing them. In particular, I want to monitor the amount of calcium so that I don’t spike it.

Then again, I’ve beaten long odds a time or two before. Nothing ventured, nothing gained.

Getting Back

Yes, I am working on getting back to writing regular posts here. I’m also focusing on getting back in other areas of life.

About five years ago, I was given a mistaken diagnosis of cancer. While I thought it was wrong from the start, I upended my life to deal with it. I stepped down from Mission: VALOR, and stepped away from a number of other things. I thought having a procedure done that proved by biopsy that I did not have cancer was the end of it. However, I just spend the last six or so weeks having to re-prove I did not have cancer because a doctor who diagnosed me by looking at me put it into a major (local at least) medical system that I had cancer.

Add in a botched colonoscopy that resulted in an ER visit, the administration of epi, and a few days in the hospital (and cost me a job), along with some other things that happened, and it’s been quite a time. I’m told that God does not give us more than we can handle, and for all I do believe that I also get the impression that God thinks I’m a bigger badass than I think I am.

Now, I have another challenge that I will be blogging about some each week. I’ve had chronic pain for a few decades now, which is not the issue save that by the time this issue was something I noticed, a lot of damage was done.

A few years back I was diagnosed with “just” osteoarthritis. Just. Well, it has done a number so that three weeks ago it was recommended that I have an immediate replacement of what is left (not a lot) of my right shoulder joint, and that I will probably (according to the surgeon) need the left done soon too. Oh, and a piece of bone that broke off in my right shoulder joint is now trying to work it’s way down into my chest.

I consider a total joint replacement using current tech to be a less-than-optimal solution. In fact, I think it a very bad idea for reasons I will lay out soon.

Instead, I am conducting an experiment on myself to see what can be done with supplements, despite the fact that the best of them work on only about thirty percent of the population and many of the more specialized supplements appear to work on less than ten percent. Again, more to come on this as part is on what can be done for the shoulders and the rest is to see if we can slow, halt, or reverse some of what is going on elsewhere.

I’m also working to see if I can get into some clinical trials involving regenerative medicine; and, if that fails, clinical trials for advanced bone replacement materials. I will share more as I can, as well as trying to get back to commentary on space, national defense, and other issues.

Your patience is appreciated, as is the readership of the couple of you who still show up here.