Hello my name is Debbie and I have a rare disease called Osteonecrosis aka Avascular Necrosis I also have Osteoarthritis Spondylolithesis FactorV Leiden Hypothyroidism
I am here to tell my story, help others, and teach not just about the disease but how eating better can help
Most commonly this occurs in the knee, shoulder, and hip, but also can occur really anywhere else in your body that you have a bone or joint . Including the Jaw.
The main causes of AVN are:
Trauma to a bone , joint
Deep sea diving,
Chemo & Radiation
Sickle cell disease or clotting disorders
Alcoholusm and those who suffer with HIV/AIDS
Autoimmune disease and there are more
And in 25 percent of cases it’s unknown cause.
There are basically 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.
Many doctors want to give steroids injection
But they make Osteonecrosis worse. They also are known to break some bone and tissue. So I say no!
But you have
Bisphosphonate drugs which may help but also have been known to cause avn in Jaw.
Hyperbaric O2 when I asked my Ortho he laughed
Water Therapy was nice until I got out of water then I felt like someone kicked me all over.
Limit weight bearing – hard when you have to walk
Electro Stimulation didn’t work for me
Infrared light was nice but results were short lived. But the heat felt great.
Stem Cell injections seem to be great results
Statin drugs help
Heat wraps help I use ThermCare Heat wraps to help pain and increase circulation
Change to plant based diet and or raw has helped my pain. Less inflammation in the body = less pain.
What basically happened was
I tore my meniscus, and more than likely injured a muscle as well that interrupted the blood supply to my medial femoral condyle. This is the inner area of my knee.
Osteonecrosis of the knee is most commonly seen in the femoral condyle, usually on the inner side of the knee (the medial femoral condyle).
On occasion, osteonecrosis can occur on the outside of the knee (the lateral femoral condyle) or on top of the shin bone (the tibial joint surface), known as the tibial plateau.
Anatomy of the Knee
The knee joint is made up of three bone surfaces:
* The femur (thigh bone), with the knee end of the femur forming two cartilage-covered compartments known as the femoral condyles
* Patella (kneecap)
* Tibia (shin bone)
The bone is living and
There is no way to revive the bone, once it’s dead it’s dead. Or can stem cells rejuvenate it before it’s actually “dead”
My doctor described the consistency to me as being similar to that of butter and another said it like a mushroom. Not stable, but ‘squishy’ bone. WTH
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, I also have Osteoarthritis, Spondylolithesis in L5 S1, and Factor V Leiden (just found that out a few months ago) which I never, would have known I had , but I read a lot about Dr. Glueck we emailed each other and he suggested certain blood tests for me to get.
So I spoke to my primary care doctor about the blood work, she is amazing doctor,she is kind , compassionate and willing to listen to my concerns.
I was told a knee replacement isn’t in the cards right now as they feel I’m too young and quite frankly I really didn’t want one.
I’ve seen countless doctors 5 Orthos who were so so,tried stimulation machines, creams, infrared heat therapy, water therapy, regular physical therapy,you name it and I have probably tried it.
Determined to seek out treatments as there must be something out there, Do doctors really expect me to suffer in pain until my knee collapses?
I really tried to do a lot of research of my own and seek out the best advice.
I have met so many doctors to many who basically told me they couldn’t do anything for me, other doctors who told me to use a walker, crutches, knee brace, to help keep weight off of it and stabilize the knee with a brace and then get a knee replacement, and others who suggested drilling into my bone, cadaver grafts and core decompression. Ahmmmm NO!
I’m currently exploring a stem cell and PRP injection procedures
Stem cell injections are very expensive and not covered by insurance. It can range from 3,500 to 10,000
Prp can run 750.00 and may require a few injections
None of either are a guarantee
But it’s had good results if you can afford them .
This needs to change and fast
To many like myself have to suffer or try to scrimp and save to try something that may or may not work.
I think insurance should cover something even if it’s only half.
If it works that’s a lot cheaper than a TKR ( total knee replacement)
Which the average hospital charge for a total knee replacement (TKR) in the United States is $49,500. A partial knee replacement (PKR) typically costs about 10 to 20 percent less than a TKR in 2016.
So my search continues
But I have been eating 50/50 raw gradually to get to at least 70/30 or 80/20 raw
But mostly plant based
And in the past few months my pain has lessened and so I will keep this up and see what happens