About Martha's Stem Cell Procedure
How the spine relates to all other joints
This is Part 18 of a serial blog originally titled 'Martha Carter's Healing Journey'. In Part 17, I caught up with scientist and friend, Dr. Kristen Fay Gorman, to get an update on the latest (fascinating!) scoliosis research and findings. In Part 16, I talk about how utterly confounding scoliosis is as a condition and speak to its many confusing and contradictory aspects, including the fact that it’s entirely ‘unique’ in how it presents and affects every single person. Missed the earlier posts? Read Part 1, Part 2, Part 3, Part 4, Part 5, Part 6, Part 7, Part 8, Part 9, Part 10, Part 11, Part 12, Part 13, Part 14 and Part 15.
Over the years, as I have worked on finding comfort and mobility in my fused spine, I have definitely felt things improve for the better.
Unfortunately, one day about 13 years ago, while moving a box up some stairs, I felt my left knee pop, and that incident was - unbeknownst to me at the time - the beginning of a new healing journey.
In the days and months that followed the initial injury, my knee felt sore and stiff. It wasn’t so bad as to send me to the doctor - after all, I have endured much worse with my back - but it did cause me to slow down and complain a lot. My massage therapist worked on it, and my pilates instructor showed me some strengthening exercises. I kept expecting it to feel better, but nothing really helped. It wasn't until three years later that I finally went to the doctor, had the x-rays and MRI’s, and learned that I had a torn meniscus.
Like any diagnosis of this kind, it felt dramatic, and I was immediately wishing for a ‘quick fix’. My doctor sent me to an orthopaedic surgeon who specializes in knees, and he recommended I have the ‘very easy’ meniscectomy surgery -- an arthroscopic procedure where the surgeon makes two or more small incisions near your knee joint, and inserts an arthroscope, a very slender telescope with fibre-optic lighting attached to a camera, which displays the interior of the joint on a high definition video screen. The image is then used to guide the small, specially-designed instruments that work to remove the torn part of the meniscus.
So, four years after the initial injury, I had a 30-minute meniscectomy procedure, and walked out of the office with the help of a friend.
However, my knee did not ever recover from the procedure, it only got worse.
I tried physiotherapy, IMS (intramuscular stimulation), massage, therapeutic yoga, hot-cold packs, hydrotherapy, and various supplements, vitamins and ointments -- but alas, no luck. Walking became increasingly difficult and, while teaching dance, I was becoming one of those teachers who sits in a chair and uses other dancers to demonstrate. I was not a happy camper, but I did not know what else to do. For the next few years, I tolerated it, but became less and less interested in walking anywhere, especially on cement. This was becoming very inconvenient.
Fast forward to 2016, 11 years after my initial injury -- and my discomfort and frustration led me to look into options with a different surgeon. He told me that I really needed a knee replacement surgery. He explained that the torn up (and now partially removed) meniscus had caused a collapse of the medial compartment of the knee, and I was developing severe arthritis that caused my leg to bow out like a cowgirl. In fact, he told me that although meniscus surgery is very common, it is rarely helpful, and that he would never recommend it! That was discouraging to hear.
Even more discouraging, he told me I needed to wait a few years before a full replacement as it’s not recommended before age 60. Instead, he suggested I try some ‘lubrication’ injections that would provide relief for a few months at a time.
I REALLY did not want a knee replacement!
After all, I had spent the last several years recovering from removing metal rods from my body - so I was very determined to not put more in!
I decided to look into the injections.
While researching online, I found many options, including the one that my surgeon had mentioned: injections of a gel-like substance (hyaluronic acid) into the joint which acts like synovial fluid to lubricate the joint, helping to reduce pain, and improve range of motion. These injections can be helpful, but, as mentioned, most of them only provide relief for a few months. They are also quite expensive, and don’t work for everyone.
In my search, I also came across the exciting and promising new world of stem cell injections for osteoarthritis (also described as regenerative medicine or interventional orthopaedics). These procedures were not available in Canada, so they seemed out of reach, but the idea planted a seed in my imagination.
Some time later, as these things happen, I sat beside a friendly man named Robert on a plane, and, as we chatted, he started to tell me that he was just returning from his first stem cell procedure for his arthritic knees!
What? Please tell me more!
The flight was short, so we agreed to keep in touch. A few weeks later, we met for a long talk, and he generously shared his full experience and answered all my questions.
This was one year ago, and, thanks to his guidance, I have now gone through the procedure myself. Yes, my knee feels much better. But in fact, my whole body feels rejuvenated. Why, you may ask? Perhaps it should be no surprise, but it turned out that the stem cell doctors were even more interested in my spine than my knee! More on that later...
About Regenexx (the stem cell clinic I chose)
Before deciding on his treatment, Robert’s research to find the best stem cell clinic led him to Regenexx, a US based company who are not only known for offering the most advanced orthopaedic stem cell procedures, but also for having performed the most procedures, having completed 68,760 procedures since 2005.
As they explain on their website, their published research accounts for approx 50% of the world’s orthopaedic stem cell literature, which illustrates their commitment to getting results. They also warn against the many clinics popping up that offer less precise procedures, specifically the ones that do not use a lab to check the stem cell mixture, nor a camera to guide the injections. They also also manage a comprehensive blog, and add regularly to their patient-driven data registry, which shows the ongoing success of their treatments. With a holistic mandate that looks at the whole body, the doctor there creates a custom program for each patient.
The beautiful thing about a stem cell procedure is that it is not a surgery. There is no cutting, amputating, stitching or suturing. There is very little blood, and conscious sedation is optional. It involves only injections. The doctor harvests blood platelets and bone marrow from each patient’s body (autologous cells) and then re-injects them, guiding the needle with the help of an ultrasound image, into the necessary injured body areas. The process relies on the body’s own innate ability to heal - to regenerate - with the help of its own growth cells.
The initial assessment
It sounded worth a try. I was so desperate to find help for my knee that I decided to follow Robert’s advice and at least sign up for an initial phone consultation.
Before the meeting, while filling out their online medical information form, the questions got me thinking:
Where do you have pain?
What joints cause you trouble?
Do you have any numbness?
Do you have any nerve pain?
Have you ever had any trauma to your spine?
I found myself describing the following:
Extreme chronic pain, swelling and stiffness in left knee (medial compartment) with a very unstable joint that clicked and popped.
Occasional pain in my right knee (medial compartment) with sharp pain in the patella when descending stairs.
Chronic burning thumb joints, and a right thumb joint that was becoming misshapen.
Numb fingers and hands on a regular basis, especially during sleep - on both sides.
Chronic back pain - especially in sacroiliac area and cervical spine.
Oh and yes, I have a fused spine due to scoliosis surgery, T6-L3.
In other words, there was more to consider than just my left knee!
Next, I was required to send MRI images of all my trouble areas (except the hands, which are easier to read via x-ray).
During my phone assessment, the doctor asked questions based on my provided information. I was surprised (and happy) at his interest in my spine, and how it related to all my joints. I was also a little less surprised (and not so happy) to find out that my twisty spine was, in their view, one of the main reasons for all of my joint issues.
To paraphrase what he explained:
Over the years, my walking and dancing crooked had overworked and destabilized my left knee, likely causing the meniscus tear and subsequent degeneration.
Asymmetry of my pelvis, combined with the fusion, had led to weakness and instability in my sacroiliac joint, likely affecting the stability and alignment in both knees.
Somewhere along the way, I had developed a fracture on my right patella (no wonder it hurt!) and Baker’s cysts behind both knees, which are quite common when knees are injured or inflamed.
And, as is very common with fusions, I have adjacent segment disease, where the vertebrae below and above the fusion start to degenerate, in the cervical discs above the fusion and the lumbar discs below the fusion. This is likely the reason for my numb fingers and burning thumbs, not to mention more trauma to the knees.
I was impressed, if not slightly disturbed, by the very thorough assessment! The doctor assured me that the stem cell treatments were a great option for me. And, due to my multiple joint issues, I was an excellent candidate for their advanced procedure which required them to not only extract my stem cells, but to replicate them in a lab. This is done at their offshore clinic in the Cayman Islands.
In March 2018, I went to the Caymans for my first of two visits. A Regenexx employee was waiting for me at the airport, and took me directly to the hotel, which had a beautiful view of the turquoise ocean. The next day, I was escorted to the clinic where the welcoming staff, doctors, and nurses made me feel comfortable and at ease. During that visit, I had an in-person meeting with the doctor, and he went over my initial assessment and treatment plan. He answered all my questions, which confirmed my choice of procedure. I then had a blood draw, and a few hours later, a bone marrow aspiration. After a day of rest, I travelled back home. Meanwhile, my cells were taken to a lab where they were replicated by the millions to ensure there would be enough to inject into my (several!) compromised joints.
Two months later, I returned to the Caymans and they did a ‘re-injection’ of the stem cells that had been harvested. They treated both knees, both thumbs, 4 discs in my cervical spine, ligaments in my sacroiliac joint, discs in my lumbar spine, and all the ligaments around my wrists and knees. It was intense!
On the first trip, when I went for the aspiration, I declined sedation because they told me that most people didn’t have any trouble with it. Unfortunately, due to my scoliosis and previous spine surgeries, I found the aspiration quite uncomfortable, and it was especially awful when they put the needle into the large scar area on my right hip crest. That scar area has always been kind of numb, but the needle made me jump as if I had got an electric shock. The pain made me start to sweat - and groan - so the nurses turned up the Bob Marley tunes, distracted me with small talk, and held me down!
When I went back for the re-injection, I insisted on sedation, and the whole thing went much better.
Unfortunately, at this time, the cost is quite prohibitive for Canadians, as it is all in US dollars, but the treatment will very likely come to Canada soon! In the meantime, there are many Regenexx-trained physicians all over the US, as well as some in Europe, India, and Asia, which makes treatment possible around the world. Cost will vary for each person and depends on the exact treatments. Let’s just say that I was happy to find out they took credit cards :)
Review of the Process
a. Contact Regenexx via website and fill out questionnaire (http://regenexx.com/).
b. Get MRI images done of all ‘bad’ areas and send to Regenexx (for me that was full spine, both knees, and x-rays of both hands).
c. Schedule phone consultation with a Regenexx doctor to assess situation.
d. Review recommendations from the consultation, read all the stem cell literature, watch videos, make a list of questions (and figure out financing!).
e. If desired, request a second consultation with the same doctor to ask questions.
f. If desired, move forward with their recommendations for whichever procedure is necessary (in my case, Regenexx C stem cell procedure in the Caymans).
g. If required to go to the Caymans, schedule two sets of appointments: a few days for an in-person assessment and aspiration, and another week two months later for the reinjection treatments.
h. Follow pre-procedure protocols to make body as healthy as possible, including paying attention to nutrition, avoiding alcohol and medications, and taking supplements (the stem cells will not work as well with alcohol, painkillers, or prescription drugs in the system).
i. Following final treatment, use braces, crutches or other recommended equipment, and follow rehab protocol.
Results So Far
It’s now been almost three months since I had my treatment and so far so good! There is no doubt that my knees, thumbs and spine feel MUCH better in general. The chronic pain inflammation in my left knee is greatly reduced, my thumbs rarely burn anymore, and I no longer wake up with numb hands.
For the first six weeks, I wore braces on both knees and took it very easy. As suggested by the clinic, I have slowly added physiotherapy, biking, stretching, pilates, yoga, and walking; especially my summer favourite - walking chest-deep in the ocean to feel resistance without too much gravity.
On the recommendation of the physiotherapist, I am using two walking sticks to support a more symmetrical stride and, after years of increased limping, encourage an upright gait. This has been very helpful, and I can walk much longer than in previous years, although I have to be very careful to not overdo it! Otherwise, my bad leg tires and I start limping again. The right knee still feels funky in the patella area when I descend stairs, but the pain in decreasing gradually.
This is all great, especially since the real results from the stem cells don’t even come in for about six months to a year! If my current condition is any indication of how they are/will be working, then I am feeling very hopeful about the future.
Stay tuned for a follow up in the new year.
In my next blog, I will address pain - something most people with scoliosis have to deal with, whether it’s occasional, situational, all-encompassing or chronic. There are varying types and degrees of pain, and pain is experienced differently from one person to the next; there is also the intertwined nature of physical and emotional pain - and the question of which comes first. Ultimately, I share a wide range of options to explore for solutions, some of which I have yet to investigate or experience, but plan to!
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