Stem Cell Treatment Journey

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spiral human DNAStem Cell Treatment is becoming the latest ‘miracle cure’, if you choose to believe all the hype.

The recent documentary ‘The Healing Miracles: The Truth About Stem Cells’ brought much to light on this subject. But from my research it is far from the truth.

Since writing about my stem cell treatment to my followers, I’ve had many inquiries about my experience. So I thought I would answer as much as I can in a blog post. 

 

My Condition Before Stem Cell Treatment

In 2009 I was diagnosed as needing a hip replacement. I was told it wasn’t ‘quite bad enough for insurance to cover it. Come back in a year.’ I talked with several doctors, all of whom told me there are no other treatments; joint replacement is your only course of action.

Of course, had I known then what I know now, I would have sought alternative care immediately.

My problem with standard joint replacement is two-fold:

  • I have severe Multiple Chemical Sensitives (MCS) and knew from experience that I would have long-term side effects from invasive surgery and implants. The thought of cutting off my bones and replacing them with a man-made object was abhorrent to me. The treatment would most-likely lead to a lifetime of reactivity problems. Even after researching all the types of implant materials, I was even further convinced this was not a good route for me. Just the shavings from the implants (they all rub and leave shavings) entering the blood stream cause toxicity in people, but it would be especially harmful for me with MCS.
  • More often than not there are damaged nerves and muscles, and infections.
  • Though there are some physicians who now specialize in less invasive surgical methods such as anterior entry on the hip, there are still too many long-term complications with this type of invasive surgery.
  • Granted, many people have hip replacements and never have problems. But the documents I read show an alarmingly high number of problems.
  • Drastic surgery such as this is also against my personal belief system that the body has great power to heal itself if we address the root cause, remove the stressors that caused the problem, and give it natural assistance to heal.

Would Stem Cell Treatment Work?

By this time, I knew stem cell treatment was the way for me to go. Unfortunately, I couldn’t afford it.

I managed to get around with the degenerative joint until finally it simple gave out from under me when I was walking. This happened the first time as I was climbing a hill. I fell on that right side and the pain was excruciating enough to put me close to unconsciousness. From that point on, I could never walk even a few steps without severe pain, and the joint continued to deteriorate.

X-rays and MRI in 2018 revealed severe bone degeneration in the femur head and acetabulum, with calcification, spurs and cysts, a fragment of cartilage left on one side, as well as a torn psoas.

 

Stem Cell Treatment Providers

Since stem cell treatment was my chosen method of treatment, my next step was to figure who, what, and where. I did a ton of research, and to anyone planning to embark on a stem cell treatment journey of your own, I caution you, DO NOT SKIP THIS STEP.

There is a huge difference in what each provider does, and unfortunately the market is now wide open for scammers and less-than-safe products.  

None of the treatments are FDA approved because there are no trial studies as done in drug tests. There’s also no money nor incentive for clinical trials and double blind studies, so the stem cell treatment field goes unregulated.

Some stem cell treatment providers are using the patient’s own bone marrow. Others use the patient’s fat cells, and some work with stem cells from donor amniotic material, placental tissue or umbilical cords. These latter physicians are experimenting with treating all sorts of chronic diseases with these fat cells or donated pre-natal fluids including brain concussions, Lyme, Alzheimers, MS, Parkinson’s, COPD, Rheumatoid Arthritis, Osteoarthritis, ALS, renal Failure, Diabetes, heart disease – you name it, they’re trying it.

Which Medium is Best?

From what I could discern, it appears to me the safest and most effective stem cell source for joint replacement is from your own bone marrow. This fluid has much more stem cells programmed to reduce inflammation; the other sources do not. From my experience, it’s the inflammation that causes the 24/7 pain deep in the joint. If there is inflammation around the joint, the stem cells that are injected will not be able to do their job.

The younger you are, the more vigorous and/or numerous your stem cells. As you age, the chance of full recovery with stem cell treatment decreases. A good physician with plenty of experience will be able to give you an expected outcome, as in percentage of recovery.

Clinics outside the US are able to ‘culture’ the stem cells, in other words, grow them in petri dishes to multiply them. This practice is illegal in the US.

You may find helpful information in this research paper.

 

Selecting a Stem Cell Treatment Provider Tips

  • Research on all methods of stem cell source
  • Keep a list of questions that come up as you research
  • Find physicians in your area and determine what they do; some specialize in specific joints or diseases
  • Check photos closely on websites; the measurements of cartilage regrowth can be deceiving by moving the ruler a hair in the photo
  • Look for documented results of previous patients; don’t just believe the miracle stories
  • Find out how long the physician/organization has been doing stem cell treatments, what type, and what source they use. Don’t rely on only the claims on a website or what you saw in a seminar
  • Try to determine how the stem cells are handled; many are mishandled and can result in unsafe injections
  • Tune in to your inner wisdom. If the physician is running a bunch of free webinars to entice people in and sign them up, you might want to take a second look at this.
  • Equally, if the price is super low compared to other providers, this may be a red flag
  • For more information on the dangers of untested stem cell clinics, please read these Washington Post articles, Heartbreaking Results for Some Patients and Promising Research to Dubious Uses and this from STAT news, https://www.statnews.com/2016/02/08/fda-crackdown-stem-cell-clinics/FDA Crackdown on Stem Cell Clinics
  • Once you’ve found a physician who has a clear track record on the joint that you need attention to, set an appointment for a consultation and make sure you have plenty of time for all your questions to be answered. Ask in advance if you can record the conversation. If you do not have the ability to record on your phone or computer, set up a free conference call with recording and have the physician call you on that conference line
  • Ask about the patients whose treatment didn’t work
  • Be sure to understand how the stem cell treatment works, the expected results from your condition after treatment, the full recovery procedures, and the full costs and cancellation fees.

 

Why I Chose Regenexx Caymen

  • Regenexx has been doing stem cell treatments the longest of any company
  • There is tons of information on their blog, like ‘10 rarely discussed facts about joint replacement surgery,’ and a post that includes a link to a website that reports how much your doctor receives each year from implant companies – who knew?!
  • Regenexx specializes in stem cell treatments for joints only
  • They track all their patients and publish the results
  • The physicians are honest in their assessment of expected outcome for your age and condition
  • They only use bone marrow stem cells from your own body
  • The cells are spun in the local lab, which gives more precise separation, not at bedside
  • Their injections are done under x-ray to get the exact precise spot needed
  • At their Cayman Island clinic they send your stem cells to a local professional lab for culturing, so you get more stem cells to inject
  • The stem cells undergo multiple tests before they are injected back into you, to ensure there is no chance of injecting potential disease or tumors
  • Their safety procedures, in my opinion, are impeccable

 

The Stem Cell Treatment Procedures

My first step was to set a telephone consultation with a Regenexx Cayman physician. There are several Regenexx clinics in the states, and some of the physicians rotate down to the Cayman clinic for 2- week shifts.

I uploaded my medical records including MRIs and X-rays to the Regenexx site before the consultation, so the physician could prepare. He was very knowledgeable and forthright, forecasting at 50-60% improvement at most. To my way of thinking, even if I got only 25% improvement, it would ‘buy me time’ until the technology was improved and insurance would cover it. Avoiding surgery while still being able to move was my top priority. I proceeded.

My first trip to Grand Cayman was brief, only for the bone marrow aspiration (BMA). I had an in-person consultation and second evaluation, blood draw, bone marrow aspiration, hip capsule distention. The results:

  • I can never give blood because I always run low hemoglobin, in spite of what I eat and take as supplements. Consequently, the technician was not able to draw as much blood as normal,  to spin for the platelet injections
  • The muscles ligaments, and tendons around my hip joint were still good, and I walked with less limp than the doctor expected given my joint condition
  • Because of the low hemoglobin, the doctor had to take less bone marrow than normal also, which meant fewer stem cells to culture. The BMA was from six points drilled atop and into the Iliac Crest
  • The marrow was aspirated, blood separated, growth factors separated, and the stem cells immediately went to the lab for culturing while fresh
  • I had a hip capsule distention, which is adding fluid into the joint to give the stem cells more room for growth once they are injected. It went well, though he couldn’t get much platelet fluid into the joint. He got a bit more range of motion in the joint, and wrote a prescription for a specific type of physical therapy that I’ll need to set up when I get home
  • After the treatment I was very light headed and tired; slept most of the day; by night time the points on my right hip where he drilled into the bone for the aspiration were aching so it was difficult to sleep; I could not take anything for it except one acetaminophen. Fortunately, the left side did not hurt
  • The following day I was still tired, but not in as much pain. Even though I was in a ‘vacation paradise’ I needed to just rest. I could not go in the water due to potential for infection at the drill and injection sites

My Second Trip

Three months later I went down for the reinjection of the stem cells. Again there were numerous tests, but the main procedures took about three hours.

  • I was there for about 10 days, with treatments spread out through that time period. All except the first day I was not be able to get in the beautiful Cayman waters.
  • Just before flying down, I was notified that the cells did not reproduce as prolifically as they expected, and the karyotype test on the telomeres did not have favorable results – the test was inconclusive. This is a test they run on the DNA to make sure the stands line up. But mine didn’t; they were a mess 
  • I chose to go down anyway and discuss this with the doctor. This was a rare occurrence, but on questioning the doctor, he said the worst case scenario is that I could possibly get cancer. Well, if you know my work, you know that I’m pretty diligent about leading a cancer-preventative healthy lifestyle. In my heart I just couldn’t believe there was anything wrong with my cells. It’s very possible the problem was with the chemicals they used in the test – remember, I have severe MCS. I trusted my inner wisdom and proceeded with the approximately 6,000 cultured stem cells instead of the minimum 12,000 they prefer
  • I had another hip capsule distention, more blood draws, and re-injected the cultured stem cells. The stem cells were injected directly into the joint, psoas, acetabulum, and femur head (injecting into the bone is called Bone Augmentation). I also had another BMA so they could culture the cells in case I needed to go back for further treatment
  • An anesthesiologist administered the anesthesia and was present the entire time. The injections were done under x-ray. Because of my MCS, it took quite a long time for me to recover from the anesthesia; I was shaking and incoherent for well over 30 minutes, to the point that staff was becoming somewhat concerned, but finally I pulled out of the shakes
  • I felt pain for the first 24 hours, but only tenderness at the drill/injection sites for the next month or so
  • A few days later the growth factors were injected

 

Recovery from Stem Cell Treatment

  • I was in a wheel chair the first week, on crutches full time for two weeks, then off and on for a month or more. This was much longer than the two weeks they publish in their literature
  • The deep pain in the join that I had felt 24/7 for decades was gone within two days. But even months later I still had great pain around the joint when I walked or put weight on it, and there was pain in my muscles
  • Two months later, I was able to go back to teaching Tai Ji Quan: Moving for Better Balance (TJQMBB). Of course, that class puts a lot of stress on that joint
  • Three months after the treatment, I was able to walk a mile without pain and teach five classes a week
  • No further treatment is needed unless I feel I want another injection. I could opt for additional treatment on the hip or my arthritic spine
  • They recommend another MRI after six to nine months, to determine progress, which I have not yet set up

Overall Impresssion

I was very impressed with the staff and physicians at this clinic and still happy with my decision to take this route. I do, however, wish they had a Stem Cell Recovery Patient Forum on Facebook or some other group means. It would be so helpful to talk with people who have gone through this – which is exactly why I’m writing this article for YOU.

Now five months, later I believe my joint will definitely hit the 50-60% improvement that was predicted, but I am dealing with another problem that was not addressed and is never talked about. It’s the pain around the joint, not in the joint.

 

What They Don’t Tell You About Stem Cell Treatment Recovery

Regenexx provided a written prescription for standard physical therapy, and a recommended plan for Bone Augmentation patients. But that was simply not effective; the exercises they recommended were painful and ultimately took my progress backwards.

What I discovered makes so much sense. The muscles around the joint and within my entire body had become accustomed to ‘accommodating the injured joint.’ For well over two decades my body had been out of alignment. Thosee muscles around the joint had worn out. If i just release the tight muscles through massage or physical therapy, there’s nothing to support the joint; it keeps slipping into a painful position. There’s no stability.

People who’ve been dealing with a joint injury for a long time should be made aware of this. Unless they correct the body alignment and deep muscle deficiencies, their stem cell treatment will probably not give the results they want. 

The Regenexx doctor who did my initial consult had recommended I look into The Egoscue Method to realign the body. I did, and I am so grateful for that recommendation. I began working with Zachary Vehrs, Clinic Director at Egoscue Seattle.

For my first visit I drove to the clinic. With just those first few exercises my muscle pain was greatly relieved. We’ve been using online conferencing for subsequent visits. I get different exercises each time, to keep loosening and strengthening the muscles.

What I learned is that my hip flexors are so overly tight in compensation to try and give the joint more stability. Releasing them just leaves me less stable until those other muscles in my hips are working better. Either that or my psoas is still injured, and stretching it is just irritating the muscle further.

I’ve been diligently doing the exercises to rehabilitate and realign the muscles so I don’t keep putting excessive strain on the joint. With the positive results I’ve been getting with this method of exercise, it’s very possible I would not have needed stem cell treatment or joint replacement at all if I had been referred to this information way back in 2009.

By the way, in case you’re wondering, I do not receive credit for this recommendation. As always, I just want to share what I have found to be helpful.

And for the bit of information I know you’re probably most interested in:

 

What Does Stem Cell Treatment Cost?

To date, stem cell treatment is not covered by any insurance company or Medicare. The overall cost of joint replacement and its long-term effects includes rehabilitation and drugs to prevent infection and pain. Without foreign travel expenses, stem cell treatment costs are substantially lower than traditional joint replacement.

I wanted stem cell treatment long before I did it, but couldn’t afford it. In order to pay for the stem cell treatment, I sold the home I had purchased when I was single. I had been renting out for over 40 years. I used my half of the proceeds to pay for the stem cell treatment and the expensive Cayman Island stay.

My cash flow has been impacted because I no longer have that rental income. The recovery has also made a dent in my retirement savings. Now I draw from the account to pay for the long-term musculoskeletal system recovery. The Egoscue Method training is also not covered by insurance or Medicare.

I don’t know what other stem cell treatments cost; I can only tell you what I paid for my own experience with Regenexx Cayman:

  • Bone marrow aspiration and reinjection cycle for one joint – $17,500 (additional joints at the same treatment $3000 each)
  • Capsular distention – $1000 for first joint (additional joints $500)
  • Bone augmentation – $1500 per joint
  • Conscious sedation – $600- $3000
  • Cryopreservation procedure and stem cells storage – $250/year
  • All tests, physician consultations, blood draws, lab work and post injections were included
  • Transportation from/to the airport, your accommodation, and all appointments was included (if you stay on Seven Mile Beach)
  • Payment was due 3 weeks prior to visit
  • Interestingly, when I checked with the Regenexx doctor in the Seattle area, his prices were actually higher than the Cayman prices

Counting stem cell treatments, travel, lodging, dining  for both trips down, I spent in the range of $35,000. I believe the Regenexx Cayman prices have gone up since last year.

 I have no regrets and am happy with my choices.

 

What About Qigong – How Did it Fit In with Stem Cell Treatment?

 I said that I believe in the body’s tremendous ability to heal if we relieve the stressors and give it the help it needs. Qigong has been part of the healing process.

After my first BMA, I started doing a Qigong exercise sequence specifically to support the stem cells. During one of my sessions at the institute where I train, I had a significant release of stagnant Qi in the joint. Then another one with my other teacher during our training retreat.

I was pleasantly surprised to learn that the karyotype test on the cells from my second BMA came out perfect. Plus the cells actually multiplied to about 23,000 – WAY more than the initial draw, with no differences in procedures. The doctors and lab director had no answer for why; I attribute those improved results to Qigong and the greater Qi flow it brought within me.

 

In Conclusion

I am so grateful that the sale of my house went through and I had the funds to pay for this treatment. I’m not as economically comfortable as I used to be. Still, I believe this, along with my Qigong and TJQMBB practices, will give me the ability to stay active and healthy for many years to come – without the harmful effects of joint replacement.

I believe there is great promise in using the body’s own stems cells. But the wild claims of miracle cures and the high pressure marketing tactics are giving stem cells a bad rap. This also confuses consumers.

I’ve read about scientists who are already growing cartilage and placing it into knees,  noses or ears as part of trials. One of my Qigong instructors, Dr. Guan-Cheng Sun is a molecular geneticist; he worked with DNA in a lab all day for a living. In other words, this is a man who knows the power of our cells. He was thrilled to hear that I had chosen stem cell treatment with bone marrow aspiration over joint replacement.

But there is too much at stake in our current medical system if stem cell treatments were adapted regularly. Surgeons, implant and drug manufacturers and many others stand to lose a lot of money if stem cell treatments became the norm.

Stem cell treatments probably won’t become a standard method of care unless consumer wise up. Don’t fall for the scammer. Consider Go Fund Me campaigns for people of little means and situations where standard care would be harmful.  Work with your legislators to enact safe stem cell treatment laws. Speak up.

I hope this post has answered your questions. If I’ve missed something please post your question in the comments below. Also, please share your thoughts, stories, and ideas on stem cell treatments. How can we can work to make them a reality for every citizen? Thank you.

p.s. You might also like  this post on self care.

 

 

5 thoughts on “Stem Cell Treatment Journey

  1. admin Post author

    From this blog’s Facebook post:
    “… very informative. One could hardly ask for more. I look forward to the time when Stephanie has her MRI, to gain an understanding of the reason for her improvements. Has the joint actually regenerated some of itself, or has all the attention and physical therapy enabled her to better deal with it as is?”

    Reply
  2. Kelly Andrews

    Thank You SO MUCH, Stephanie, for writing this blog post on Stem Cell Treatment and for being so upfront and THOROUGH in letting us know the full level of your experience.
    Quick note: in the last paragraph under the subheading ‘Which Medium is Best?’ it says: “You may find helpful information in this research paper.” However, there does not appear to be any link for that.
    Thanks, too, for the Egoscue recommendation; that definitely appears worth doing.
    I am now pursuing working with Regenexx with regards to my hip degeneration, and will report about it as I go.
    Thanks Again — Kelly

    Reply
    1. admin Post author

      Thank you for your comment, Kelly. I’m happy to hear you found this helpful. I checked the link that you mentioned, and it does appear to be working – perhaps just a browser error? In any case, the link is https://www.cell.com/cell-stem-cell/fulltext/S1934-5909(16)30157-6. As you pursue Regenexx, I recommend simultaneously talking to an Egoscue Method specialist. I truly believe if I had known about that when I was first diagnosed, I may not have needed treatment to the extent that I’ve had done. Wishing you much success with your own hip journey, and do keep us posted when you can.

      Reply
  3. Kelly Andrews

    Thought I would post the continuation of my “Hip Journey” and progress … with the hope that it might be useful information for others deciding on their path to healing.

    Based on my disappointment in meeting with an Orthopedic Surgeon — who, in just 20 minutes, made it clear that she considered there to be only one option (Hip Replacement, of course) — and since I am very interested in the Stem Cell Treatment provided by Regenexx, I decided to make two appointments in the Seattle area to explore my options. One was with Dr. Attaman, who is head of the regional Regenexx clinic, and the second was with Zachary Vehrs of the Egoscue Clinic.

    I was impressed by Dr. Attaman; he is relaxed and comfortable to talk with, knows his stuff, and was very upfront with me. After assessment and review of my hip x-rays, he determined — based on how Regenexx qualifies candidates utilizing their extensive followup data from patients — that I would not be a candidate for the single day stem cell treatment that is the only treatment allowed in the USA. He said Regenexx has excellent results with knee operations, but that hips are a bit trickier, especially with the degeneration that I show. I appreciate that Regenexx is upfront with this and not just another sleazy business wanting to run people through as a money maker (and there are lots of those out there).

    He then talked about two alternatives; one for those in lots of pain and needing to deal primarily with that (thankfully I am NOT). The other option is the Advanced Orthopedic Stem Cell Procedure that Stephanie did in the Cayman Islands. I am excited to pursue this, and Dr. Attaman sent an introduction to the Caymans to get that started, and also wrote a prescription for a MRI which they require to make their assessment. I am moving ahead with all that now.

    The appointment with Zac of the Egoscue Clinic also went well, and I have gone through a couple of sessions with him now. Very good person to work with, and I actually like doing the “e-cises” (even though I never enjoyed doing stretching routines before). Am also reading Pete Egoscue’s book “Pain Free” which is helping me understand the process of realignment and the need to make healthy adjustments to solve my situation.

    What you wrote, Stephanie, about the importance of the muscles involved being worn out due to the body being out of alignment makes a lot of sense to me now, and is clearly NOT addressed by Orthopedic Surgeons who only want to do a Hip Replacement. So I am happy to be including Egoscue in my Treatment Plan.

    Thank You again for the great detail you provided on your experience, Stephanie … and for your continued Support!
    Onward I Go — and will provide more details as I progress.

    Kelly

    Reply
    1. admin Post author

      Wow, Kelly, thank you for this great progress update! I”m sorry to hear that you have to go to the Cayman extent that I did, but you’re absolutely right. It’s great that Regenexx clinicians tell you the truth about their expectations.

      I too have been reading Pain Free and what Pete writes make so much sense. I have a friend who had a hip replacement and is now facing a knee replacement. I fear if she doesn’t start realigning her body the ankle will be next to go.

      You’re right, Kelly, that surgeons isolate the joint and only deal with relieving the pain of the joint inflammation by surgery. They never take into account that all the muscles, ligaments, tendons of the body are connected and affected. The same may be true with most physical therapy exercises; they focus only on the joint. It seems to me that most allopathic medical treatments have an isolationist approach.

      Zac’s exercises have been extremely helpful for me, though it’s slow going. I’ve been out of alignment for decades, and I must gently train the muscles to bring the bones back in place. Zac really knows his stuff, and it’s super convenient to do our sessions online.

      Email me if you want info on Grand Cayman when you’re ready to make that trip down.

      Thank you for sharing your experience, Kelly.

      Reply

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