If you’ve been following my blog you’ll know that I have avascular necrosis in my left femur, right where my knee bends. (Read some AVN blog posts here)
I’ve seen countless doctors (read about Dr. Glueck here), tried acupuncture (post 1 & post 2), the blood thinner lovenox (update 1 & update 2), have been on crutches for 2 ½ years, have tried braces, LifeForce Therapy, stim machines, creams, essential oils . . . you name it. Determined to try everything PRIOR to resorting to a surgical procedure, I really tried to do a ton of research and seek out the best advice.
I have met so many doctors who basically told me they couldn’t do anything for me, other doctors who told me to walk on crutches for 10 more years and then get a knee replacement, and others who suggested drilling into my bone, cadaver grafts and core decompressions.
To play catch up, incase you don’t know –
Avascular Necrosis “AVN” or Osteonecrosis “ON” are the terms used to describe parts of your bones that die. Most commonly this occurs in the shoulder and hip, but also can occur in the knees and really anywhere else in your body that you have a bone!
The main causes of AVN are: alcoholism, heavy steroid use, deep sea diving, sickle cell disease or clotting disorders.
There are 4 stages of avascular necrosis which depict the severity of the bone death. Depending on the stage, there are many different treatment options available. The problem with treating AVN is that there are so many different treatment options because none of them are highly successful.
What basically happened was that my femur bone had a stroke like event occur. The blood supply was cut off in two parts of the bone and, because your bones need blood to survive, those two parts died. After seeing many doctors, it is my assumption that this occurred because of a blood clotting disorder (prothrombin thombophilia) that I’ve been diagnosed with.
There is no way to revive the bone, once it’s dead it’s dead. My doctor described the consistency to me as being similar to that of a mushroom. Not stable, but ‘squishy’ bone. BUT because death of cells can take awhile, it’s possible that some of the cells aren’t completely dead YET. Hence why the blood thinner therapy seemed to work on the smaller AVN part of my femur.
There are many procedures out there that can “help” AVN. Because there are several different ways to treat it, no one way is a sure fix. If AVN occurs in patients of an older age the doctor will do a hip or knee replacement. In my case, because there are so many other factors going on as well, a knee replacement isn’t in the cards right now. (You can find AVN resources on my AVN page)
Now What?
At the end of Summer 2014, I had learned about 2 different therapies that I thought sounded promising! One was from my orthopedic doctor who said they did platelets rich plasma, or PRP, injections.
[su_quote cite=”PRP Injection.com” url=”http://www.prpinjection.com/platelet-rich-plasma-therapy/”]Platelets are best known for their ability to coagulate to stop bleeding; however, new evidence indicates that platelets also produce growth factors needed to mend and strengthen damaged tissues. By extracting a patient’s plasma and centrifuging it, these important substances can be isolated. After separation, they are placed in a syringe and injected into a specific area or joint, such as the knee or hip, giving the damaged tissues more than enough healing factors to begin the process of repair.[/su_quote]
My integrative medicine doctor recommended either placenta injections, human growth hormone injections or stem cell injections. I was completely turned off by the fact that the placenta injections came from random women in Asia and was very weary about the human growth hormone injections because it was a synthetic product that would be injected into my body. I was REALLY interested in the stem cells.
My Grandpa said the first thing he was going to do when he got to Heaven was find a solution for my knee problem. He passed away the beginning of September and I felt very confident that I was going to have an amazing guardian angel from here on out. One night, about a week after my Grandpa’s death, I started thinking. What if I could get the stem cell procedure from my Integrative Medicine Dr and the PRP treatment from my Ortho at the SAME TIME. Wouldn’t the PRP help support a healing environment for the stem cells?
In my mind I thought this was an awesome idea, so I started googling.
BAM. Regenexx Procedures. “Stem Cell & PRP Therapy”.
Google say whhhaaatttt? Was this real?
So I started looking into it more and more and found that they specifically had a procedure to treat avascular necrosis! I first read this post about a woman who had a successful AVN procedure done through them. Summary of this post ” .. the lesion has dramatically improved in this end-stage knee, due to an injection of the patients own stem cells under x-ray guidance into this bone AVN lesion.” (Regenexx)
Here are more posts on successful AVN knee procedures:
Knee Osteonecrosis Alternatives: Can a Precise Injection Rescue Dying Bone?
A Two Year plus Report of Knee Stem Cells in an Avid Skier
Another Intenventional Orthopedics First: Injecting Stem Cells into a Knee Cap with AVN
I started looking at the search page and just for kicks typed in Pittsburgh. My socks were completely knocked off (literally 😉 haha) when someone popped up! THERE WAS AN OFFICE IN PITTSBURGH WHO DID THESE PROCEDURES?! WHAAATTT?!
I was extremely angry at first. I had been to see HOW MANY DOCTORS in the ti-state area and NOONE ever mentioned them?
After completing the candidacy form and talking to the Denver clinic over the phone, I went to the Pittsburgh office for an appointment. I was so excited. I felt so optimistic! So hopeful!
The doctor came in, did an examination and quickly told me that he wouldn’t be able to do the procedure for me. Currently the Pittsburgh office was only doing cartilage and ligament procedures, not bone.
Poop.
BUT! He definitely suggested I talk to one of the other offices, if not travel out to the main clinic in Denver, because I sounded like a candidate for the procedure.
After talking with a doctor in New Jersey and one in Denver, I finally have a procedure set up March 23rd out in Denver!
I couldn’t be more excited!
Sooooooo… what exactly are they going to do?
Watch this quick video that gives a basic overview!
Now, because my procedure is going to be done on my bone, my procedure will be a little bit different.
From what I know, first they will go in and drill out the dead part of my bone. They will then inject a demineralized bone mixture (basically a paste that is ground up bone) into the freshly drilled bone. Once that’s complete, they will then inject my stem cells, mixed into the PRP solution, into the area of my bone and also into the area where my cartilage is damaged. Then, a few days later, I will get another PRP injection to promote healing!
The whole procedure will be done over the course of 8 days. I have my first appointment on Monday, March 23rd, 2015 and will have my last PRP injection on Monday, March 30th!
Honestly, I truly feel this is my answer. I believe that it WASN’T a coincidence that I stumbled upon this procedure right after my Grandpa passed away. I also believe that the timing couldn’t be more perfect. Mentally and physically my body is in a great state. In order to help the stem cells grow, I had to go off of my humira. It’s been about a year and a half that I’ve been eating anti-inflammatorally (did I just make up a word? haha!) and I feel like I have a great handle on it. I’ve detoxed my body from toxins in my beauty products and truly make every conscious effort to stay in a positive, up beat mood. EVERY LITTLE BIT HELPS!
What am I doing to get ready for the procedure?
1. I’m making sure my body is in the best shape that it can be. I’m being EXTRA careful about what I eat – steering clear of red meat, dairy, gluten, sugar, corn, vegetable oils, soy, alcohol, GMOs and all other toxins. Anti-inflammatory is all about managing your omega 3’s and omega 6’s – so that’s a huge area of concentration right now! Bring on the chia seeds and salmon 😉
2. I’m stepping up my meditation game and truly getting my body in the mode of healing. I’ve been using mantras and keep telling myself this procedure WILL WORK!
3. I’m going to get a chiropractic adjustment to make sure everything is in alignment.
4. I’m doing foot detox baths, bi-weekly, at my chiropractor’s to make sure my body is rid of toxins that may prohibit stem cell growth!
5. I’m maintaining a positive and optimistic outlook by reading books, journaling, practicing gratitude, meditation, yoga, ect!
6. I’ll be using LifeForce therapy to help my body heal by doing a session a week before my procedure and then going in for my 4 session protocol right when I get home.
7. I’ll be relying on my support system and realizing I don’t need to take on everything myself.
8. I’m detoxing off of my immunosuppressant Humira in order to allow for my immune system to properly react to the stem cell injections.
9. I’m talking to past patients to make sure I’m prepared.
10. I’m praying for the best outcome and thanking my Grandpa (or whatever force) led me to find the Regenexx Procedure!
Only God knows how this will play out, but I honestly, truly, 100000000% believe that this is the answer I’ve been waiting and praying for!
Stay tuned to hear about my adventures from Colorado 🙂
Wishing You A Pain Free Day!
Check out how the procedure went:
Procedure:
Want to know how I found the procedure? There’s a post for that 😉
Day 1: Did you miss my previous post about my prolotherapy injections? Catch up here!
Day 2 & 3: Want to know more about when I had my blood drawn for my injections? Read this one!
Day 4 – 7: Interested in how the procedure went? Click here!
Day 8: Want to read about the last day of the whole process and my journey home? This is the post for you!
Monthly Recovery Posts:
Month 1: 5 tips from my post 1 month Regenexx recovery right here 😉
Month 2: In my 2 month follow up, I talk about 3 noticeable differences I’d identified!
Month 3: 3 month follow up and 3 things I’m grateful for.
Month 4: 4 months post Regenexx I’ve been caught saying ‘this is the first time in a long time’ A LOT!
Month 5: 10 NEW things I did 5 months post Regenexx!!
Month 6 & 7: MRI update on how things are regenerating and how I’m doing without my biologic Humira
Month 8 & 9: Spent 3 Christmases on crutches and it feels DAMN GOOD to be crutchless this year!
Month 10 & 11: Back to living a normal life & celebrating things I haven’t done in YEARS!
One Year: One year celebration and update on getting a platelets treatment for a different problem!
One Year + 6 Months: I traveled to the NIH to speak at an FDA hearing regarding regulations and guidelines on stem cells. Watch my testimony!
Two Years: Celebrating 2 years of a mobile and pain-free life!
Looking forward to hearing how it turns out I too am getting a regenexx procedure done from a knee injury in a car accident and my Grandma had just passed away what a coincidence
What a wonderful thing! I don’t believe in coincidences – I truly believe things bring us together for a reason. 🙂
When and where are you getting your procedure done? In Colorado as well? I contemplated going to Jersey, but decided on Colorado in the end because I felt more comfortable after talking with the doc from CO.
I’m so excited I can’t stop smiling! I just KNOW it’s going to be the fix I’ve been looking for.
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great read – Question? You say you are on a strict diet and listed many things you have stopped eating. What do you eat? That list looked to be everything on the food pyramid.
Thanks 🙂 Hahahahaha! I eat REAL, whole foods! 🙂 Lots of fruits, veggies and quality meat like chicken, turkey, fish. I actually make most things from scratch so I know what I’m eating. Food can either be fuel and the most powerful medicine or a poison to our body!
Thanks Hahahahaha! I eat REAL, whole foods! Lots of fruits, veggies and quality meat like chicken, turkey, fish. I actually make most things from scratch so I know what I’m eating. Food can either be fuel and the most powerful medicine or a poison to our body!
Did you ever have the procedure?
I did! I’ve written a bunch of follow up posts. I actually just updated the end of this post to have links for the others. Here’s the first one: http://www.itsjustabadday.com/2015/04/08/avn-regenexx-stem-cell-therapy-procedure-day-1/
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Wow, very interesting! I must say I’m so happy to find your site. I was diagnosed with ON in both knees 14 years ago at the age of 30. My symptoms began three months after a IV steroid injection in the ER after a life threatening asthma attack. I’ve had a core decompression (worst experience ever) and a partial replacement on the right knee (nothing on left). Yesterday was a bad day – hence today I find myself looking for new hope and came across your site. BTW – I live a very active life – no running of course (I love a good elliptical workout most days), but I do try to stay in shape and eat well. I’ve made it through 14 years, yet I dread what the next 14 bring. In the past, like you, it was difficult to find anyone with knowledge of this disease. I honestly was told the very same things you have been told. Eventually, I found a good orthopedic that sent me to pain management three years after diagnosis. At this point in time, I could have replacements at my age, yet due to the core damage, I just keep taking meds and putting it off for fear of complications. The meds keep me going but do bring on their own issues.
I’d like to know how you are doing. How is your pain and activity level? Really hoping you are doing well and you’ve found something that works for you.
I’m so glad you came across my blog. When I was looking for hope it was hard to find so I knew I had to start it myself! So I’ve spent 3+ years on crutches so my mobility has been very limited, but I’m extremely active with yoga. In March I did get the Regenexx procedure and for the first time in over 3 years I’m off ALL pain meds, I’m not in pain and every week that goes by I’m moving more and more. Actually, the last 4 days I haven’t used my crutches since June 2012! I couldn’t be more excited about that!!!! I’ve been writing updates monthly on my regenexx procedure- was just writing my 4 month update today. I’m amazed at how well I’m doing!!!!! I’d definitely suggest looking into it or something similar to it. Because you’re right, you’ll need to do something because it wont get better on it’s own. I went for the stem cell procedure because I figured, worst case scenario if it didn’t work, then I could get a replacement. Replacements are really big surgeries. I feel like they’re taken so lightly these days. My hope is that I never need one after getting this procedure. But time will tell!!
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I know this is an old article, but I’ve just spent a good 4 hours reading your journey on your blog and just WOW!! I’m so excited to see that you have recovered from your AVN. My question is how did you convince your medical insurance to cover the procedures, or did you pay out of pocket. I’ve been in a wheelchair for 2 years because of AVN and now looking at having to undergo knee replacement if I want to walk again since my insurance considers this procedure “experimental.” Thanks and best wishes!
Hello! Thank you so much for reading!! There’s no convincing, currently regulations won’t allow insurance companies to cover. Right now the FDA guidelines are up in the air (they’re currently covered, but there hearings this past fall which could impact that) so I don’t foresee it being covered anytime soon.
If I can be honest, it was such a small price to pay to get my life back. So many think it’s a lot more expensive than it actually is. Scaling back on dinners out, vacations, extra things – those things aren’t worth it in the end. LIVING is worth it. I don’t think there’s a price you can put on it. I actually get upset when people write it off right away saying they couldn’t afford it. Where there’s a will, there’s a way!
Joint replacements cost ~ $40k. Sure insurance companies “cover it”, but you still have deductibles, you still have recovery, you have pain, you have medications, you have MONTHS AND MONTHS of PT. . . Time is money as well and the recovery period for using your own body to heal is tremendously faster. Also, your body isn’t going to reject your own stem cells! Therefore, the complications are far less (if any at all)
Happy to answer any questions you may have! I’m actually thinking about getting another procedure done. My knee has been “not normal” for almost 20 years. I had such wonderful results the first time, I trust them wholeheartedly and would refer anyone and everyone.
I’ve since gotten to know a local doctor’s office in Pittsburgh, PA who does the procedures, as well as gotten to know the Centeno Schultz clinic on a personal basis. I can tell you I’m amazed at the standard they keep for all of their clinics. Before, I went out to Colorado because the Pgh office couldn’t do it yet and I felt more comfortable at their home office. Now, I’d definitely trust any of the affiliates of Regenexx because I know what their training processes are like now!
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