My experience with Mesencheymal Stem cell injections in the U.S. and Cayman Islands
I know it is unusual for a photography blog to head into the territory of health care, but I hope some folks will find this information useful. When I was researching whether I should get stem cell injections, I found it hard to get personal testimony other than from clinic website. They were all, of course, promotional and glowing. I was combing the internet looking for someone’s personal experiences and results to help me weigh the pros and cons.
Mesencheymal stem cells are harvested from your own bone marrow, and, as such, will not be rejected by your body. These stem cells are primarily used to rehabilitate degenerative joint issues. Mesencheymal stem cells are undifferentiated stem cells, which means, in essence, that they are blank stem cells waiting to be assigned a function . They can work to repair ligaments, tendons, bones and nerves. The injections are not covered by health insurances, and, therefore, involve all out of pocket expenses. That is why I hope this blog will be informative for those considering the pros and cons of trying this procedure.
First a Little History:
I have always been actively and athletically involved, not at a high level, but as an avid recreationalist. I enjoy hiking, mountain biking, backpacking, downhill and cross country skiing. I love birding, photography, traveling. All of these activities involve a certain level of able bodied participation.
When I was 35, I ran a short 5k New Year’s Day Road race. The next day, as I was preparing to leave for my teaching job, I stoked the wood stove. When I tried to stand, my back went into a major spasm. This was a new experience for me and I thought it would dissipate as the day wore on. It didn’t, and this became the start of long term chronic low back pain.
Trying to find some relief, I tried all kinds of non-invasive modalities- massage, stretching, heat, ice, chiropractic, rolfing and PT. Nothing really gave me back the life I had before. Eventually, several years later, after that initial spasm, I stumbled across an osteopath in Burlington, Vermont a couple of hours from where I lived. At that time, some 20 years ago now, the cutting edge procedure was something called “Prolotherapy”. I began getting a series of Prolotherapy injections several times a year for the next 15 years.
The theory behind Prolotherapy is the ligaments and tendons have very little blood supply. The inflammatory response that blood supplies to an injury is beneficial to telling the body to send antibodies to the injured area for repair. With Prolotherapy, the injured areas is injected with a non-toxic agent, to naturally inflame the area and, thus, send a response signal to the body to flood the area with antibodies to help with healing.
Prolotherapy was not a magic bullet for me, but it was covered by insurance and it did provide me with enough relief to continue with an active lifestyle, but not without lots of daily maintenance and some modifications on my part. For example, I gave up running and did more hiking. I switched from a road bike to a mountain bike where I could sit more upright. And, of course, there was lots of stretching, chiropractic appointments, massage, ice and hot baths. My back pain was still daily and chronic, but I was able to function at a fairly high level.
PRP and United States based stem cells:
Prolotherapy was my go to method for 15 years, but as I aged and continued to be active, I began to experience symptoms in other areas of my body. The main problem with my back has been a weak SI or sacroilliac joint, which caused my lower back to be unstable. I believe this instability, eventually, contributed to stress in my right hip and my knees.
I love to ski- both cross country and downhill. The turning point for me was when one winter my hip was bad enough that I couldn’t down hill ski. I live in Northern Vermont. The winters are long here. My wife is an active and very good skier. Not being able to ski did not feel like and option. At least not if I had other choices.
Before my hip got to where I couldn’t ski, but was needing help, I had tried the next line of defense after Prolotherapy, PRP, or platelet rich plasma. This is a substantial out of pocket expense ($1200-1500 depending on how many areas are injected), but no where nearly as expensive as stem cells. It seemed like the appropriate next step. I tried several rounds of injections in both by knees, hip, and SI joint. If PRP helped, I couldn’t tell in my overall function. Because I didn’t receive any significant results with PRP, or at least feel that I did, I was willing to take the next step and try stem cells.
Stem cells (US):
So, in the spring, after the winter of not skiing, I started my first stem cell procedure. This was done as a one day procedure out of my doctor’s office. In total, I have had two rounds of stem cells using this in office/one day procedure. The first time I had injections in my right hip, right knee and both SI joints. The second time was last fall (2016) when I had injections in both knees. The reason I mention this is that the procedure and protocol seemed to change from the first to the second procedure. Stem cells injections are a relatively new addition to orthopedic injuries and they seem to keep looking at the best and most effective way to inject the cells.
To prepare your body for stem cell injections, you go into the doctor’s office 2-4 days before the stem cell injections and have prolotherapy injections into the specific injured sites. The reason is to intentionally inflame the sites, so that the stem cells have a sense of direction and purpose.
On the day of the procedure, you will go in several hours ahead of the injections and have the stem cells withdrawn. The best stem cell repository is in your butt. They drill down into your blood marrow to extract the cells. This sounds a lot worse than it is. They numb the site ahead of time and use the smallest of drills. The weirdest part is listening to the drill, but, otherwise, I was able to have a conversation with my doctor through out the process. I did not use any sedatives for the procedure, though for the squeamish or faint of heart, they are offered. The withdrawn blood is then put in a special centrifuge to separate out the stem cells from the blood and plasma.
Several hours later, you return to the office and have the stem cells injected. This can be somewhat uncomfortable to painful as the stem cells are quite thick. Just ask your doctor to slow down to let your body absorb and adjust to the stem cells. After the injections, depending on the site, you are expected to be non-weight bearing until you return for the follow-up procedure 4-7 days later. The follow-up procedure includes injecting PRP into the same sites, to help boost and support the stem cell growth.
The cost for my stem cell procedure(s) was about $8000.00. This was not chump change for someone who made their living as a teacher in Northern Vermont, where salaries are much lower than elsewhere in the state. After much thought and consternation, it was a gamble and an expense, I decided to take. I felt I was too young to resign myself to the sidelines of life. At least, not yet, and not without a fight.
You may ask why didn’t I just get a hip replacement, which my insurance would cover. For me, my injuries were not bone or arthritic related, but more soft tissue issues. Oh sure, I did have some arthritis, but not to the point of warranting surgery. Plus, surgery comes with risk, more than they are willing to let on. I had relatives who had successful hip replacements and others who had significant problems after their surgeries. For me, I felt that stem cells were less invasive and were using my own body to help in the healing process. But, I did truly agonize over the cost. It was not a quick or easy decision for me because of the cost factor.
Now begins the waiting game. You will most likely be sore for the first 24-48 hours, maybe significantly. The doctor will give you a prescription for pain medicine. I, however, have never needed more than Tylenol, but for the first 24 hours I was taking it every 4 hours. After this initial recovery, you will most likely be stiff for another week, with gradual improvement each day.
The doctor will give you a schedule of what to expect and a schedule for the rehab process when you leave the office. They will tell you to be very easy on your body for the first three weeks, so as not to stress the stem cells, but will give you exercises that you can start immediately, as tolerated.
After 3 months, you are said to be able to return to full activity, but this will depend on the severity of the injury that is being treated. The more damaged the joint, the longer the recovery.
When I had my first procedure it was at the end of May. By the end of July, I was still very stiff in the mornings, so much so that I wondered if this had all been a waste of money and time. You, too, will have your moments of doubt, as this is a rebuilding process within your body, and, as such, is not going to happen overnight. Try to have faith.
They say that some people experience almost immediate relief; others take several months; others still might not know until 6 months out from the procedure. I was in that later category. It was at least 5 or 6 months before I began to feel that there was a change taking place in my hip. For example, prior to the injections, my hip would catch when I did an internal rotation, say when shifting from the gas pedal in my car to the brake. The catch would take my breath away, like a shock. By the 5-6 month, the catch no longer existed or was very minor.
My back, or specifically my SI joint, was more subtle, but eventually, I realized that I had not been to the chiropractor in several months; then a year; then, now, several years running. This was significant in that I had been to a chiropractor at least once a month for years, sometimes a couple of times a month.
Was I pain free? No, but I think I had other things going on in my back other than my SI joint. As for the hip, it did great. Really well. In fact, that winter I was able to downhill ski and that spring we went to Utah for our annual ski trip and I was able to ski 4 days straight of knee deep powder in black and double black trails. Amazing. I was also able to train for and complete a month long backpacking on the John Muir Trail. This active lifestyle did take its toll however, and required follow up stem cell injections (stateside) and a visit to the Cayman Islands, where they culture the cells.
As I said, I did have success with stem cells, but, for me, it seems to require maintenance and re-injections every few years. Because of this I looked at going to the Cayman Islands where they are allowed to culture the cells. The United States will not, at this time (2019) allow US doctors to culture stem cells.
What is the advantage of cultured cells? Millions and Millions more stem cells from the same amount of blood as from US stem cells. In my case, in the Caymans, I created 43 million uncultured stem cells. In April 2017, the lab thawed 16 million stem cells, which they cultured for two-three days. These cells expanded to 82 million stem cells. I used these stem cells to inject the multifudus muscles in my low back, my right hip, and my left knee. I still have 27 million uncultured stem cells remaining to be used. These will culture out to 124 million more stem cells. I plan on using most of these, but not all, again this summer (2019) for both hips and both knees, as well as, the multifudus again. I know my body is a mess! After these injections, I will still have enough cells remaining and stored to inject another couple of joints in the future. Amazing, right? From just one injection. But did I mention the cost?
The Cayman Cost
First of all your stay in the Cayman’s is expensive, at least by my standards. $225.00 plus for a Holiday Inn, for example. This is where folks go to launder money. Jaguars are everywhere on the streets. That is just for starters.
The cost of my injections (the price is going up in September 2019), was $10,750.00 for the initial blood withdrawal, which did not include an overnight flight down to the Cayman’s for the procedure, or an overnight stay in a hotel. My flight was $535.00. The hotel was $255.00.
Six weeks later I returned to the Cayman’s for the re-injection, which came to $8250.00 for three joints.
I am headed down again in August of 2019 for my second round of injections to four joints. For these injections it will cost me about $17,000. This includes all cost- airfare, stay, re-injections.
You will also have to pay $250 for storage of your cells per year of non-use.
All this and it still does not cover the in between years where I get fall and summer injections of PRP for maintenance to the tune of $1500.00 per visit.
So as you can see this process, despite the benefits of a minimally invasive process, is not for the faint of heart. At least not for me and my budget.
Side bar about hip replacements:
I cannot understand why with hip and knee replacements costing the insurance companies anywhere between $20,000-$40,000 dollars why they would not consider stem cells as a first line of defense before invasive surgery. $8000.00 is a lot cheaper than $40,000 and leaves plenty of wiggle room for follow-up stem cell injections before surgery might be is necessary.
The success rate of stem cells for most areas of the body is between 50%- 75% improvement in functioning and pain. Stem cells are now being widely used in professional sports to help athletes get back on the field sooner. So why with all the national debate about health care cost are insurance companies not looking more closely at this option.
The answer, lobbyist. The companies that make the joint replacements have powerful lobbies in Congress. Period. They will say that stem cells are experimental and unproven, but stem cells have been around long enough now that if they wanted to gather empirical evidence they could. Frustrating, isn’t it!
That being said, hip replacements, though common, are a serious surgery. Once you remove the hip ball and socket, there is no going back. As my doctor said, rather graphically, they are amputating your hip and inserting a metal replacement. That replacement can loosen over time. The metal and polymer blend can a braid and end up in your blood stream or poison the surrounding tissue. The doctors can screw up and put in the wrong parts. I have a friend that that happened to. They put in a prosthetic that was too short for his 6’4′” frame. Three surgeries later and several years later, he is still in bad shape.
So the long and short of it.
Yes, I have had a lot of success with stem cell injections, but… and there are buts. The plus, it is a minimally invasive technique that does require patience in the recovery process. It has been successful for me, and allowed me to live an active lifestyle, but has still required me to have follow up injections, which is frustrating and costly. To say the least! It has bought me years of time, if eventually, I do decide to have a hip replacement. If I have a hip replacement down the line, it will be because of the unsustainable financial cost, not because of my lack of of belief in stem cells. I think they are amazing. Really! I just wish and hope in the near(er) that the FDA loosens its restrictions and that, someday, insurance companies see the cost savings in this method.
So the upshot is this, if you can afford stem cells, I wholeheartedly believe it should be a first method of choice before considering surgery. Hands down.