Posted in Ahlbacks Disease, Arthritis, Avascular Necrosis, Awareness, Bone Health, BreakThroughCrew, Chronic Pain, Clinical Trials, Diagnosed, Eat Healthy, Factor V Leiden, Hashimoto, Hypothyroidism, Life, osteoarthritis, Osteonecrosis, Pain, SPONK, Stem Cell, StopTheClot, Support Group, Hope, The Mighty, WegoHealth, WEGOHealthAwards, wellness

WEGOHealth Awards and How to Nominate Others

I’m honored to say I’ve been nominated for the #WEGOHealthAwards! These awards seek to recognize Patient Leaders who are making an impact with their advocacy. Learn more – nominate today.

Here’s how you can also nominate others who educate, advocate and make a difference!

Click link below

WEGOHealth Awards and Nomination Info

WEGOHealth Awards Link To Information

Think about the advocates and influencers you see leading Facebook groups, blogging about their health journey, speaking up and giving insights to healthcare companies, presenting on national stages, and running Twitter chats.

Patient Leaders have started non-profits, published podcast episodes, and authored books – there is no shortage of Patient Leaders’ contributions to the world, so let’s recognize as many of them as we can for their talents, contributions, and commitment.

Feel free to add their names and web info also in my comment section! And they can get some recognition here to !

Have a Great Day Everyone

Posted in Ahlbacks Disease, Awareness, Bone Health, Chronic Pain, osteoarthritis, Osteonecrosis, Pain, SONK, SPONK, Stem Cell, Stem Cell Injections, Thoughts, WegoHealth, wellness

The Cost Of Knee Replacements

If you’re having trouble with your knees, you’re not alone.

I also have knee issues. I have Osteonecrosis and osteoarthritis and a torn meniscus all in the same knee.

And doctors are basically waiting for my knee to collapse to replace it.

Me I’m looking to avoid a collapse but at the 10k out of pocket cost it’s almost impossible. I’m talking stem cell injection.

Many people young and old alike are having many problems with their knees and ready to stop the pain.

Can you believe knee replacements have doubled in the United States from 2004 to 2014!

People want to have relief from their knee pain. The shouldn’t have to pas on a treatment that will work becz it’s not covered, or be stuck to live in pain until the knee collapses, then be forced to pay for a replacement.

One option that often comes up is knee replacement surgery.

However, it’s a very expensive surgery that includes a lot of pain and extensive physical therapy. And come on now let’s not forget they remove the end of the knee and replace it with artificial parts.

So let’s walk you through the true cost of knee replacement surgery so you have an idea of what to expect.

Pre-Surgical Consultation Fees

Individuals having knee replacement surgery can expect to incur costs long before actually being admitted to the hospital.

A pre-surgical evaluation or consultation must be completed by your orthopedic surgeon in order to see if an individual can even have the surgery. I think they do this for every surgery to make sure we are strong enough to handle the surgery and not die in the table.

I had umbilical hernia surgery in 2017 and had a cut scan , then a stress test, blood work. All for a 40 minute hernia repair.


This consultation will involve imaging X-rays and MRI’s ,then there is blood work, cultures, and panels.

Patients can expect their providers to also do the following:

Determine bone mineral density

Issue a liver function test

Do an EKG or EC

Possibly a stress test

Conduct a urine test

The consult determines what type of knee replacement surgery will be required PKR or TKR partial or total knee replacement.

Then the cost of the hospital stay and surgery costs.

Those who gave a knee replacement should expect to be in the hospital for at least 2-6 days.

During this time, the patient will require the help of many healthcare professionals.

The cost of the inpatient stay will largely be dependent upon the following:

Length of time in the operating room

Any preexisting conditions that require extra care

Type of implant

Surgical approach


Number of days in the hospital

Be prepared while in the hospital you will be paying for everything, every pill, glass of water, meals, physical therapy, nurses all of it

Many knee surgery candidates elect to have surgery overseas due to the large difference in cost. In some countries, knee replacement surgery is 50 to 80 percent cheaper than they are in the United States. But no always covered by insurance and it can be risky.

So say you have an 80/20 plan and your knee replacement is 45,000.00 your 20 percent is 9000.00

Now a stem cell injection is 8-10,000usd. Would it not be more cost effective and save the patient pain , and the actual loss of their own joint to just even cover a stem cell injection if the patient meets the criteria?

Even 60/40 would be a plus.

We have get insurance companies, medicare and Medicare to come into the real world. We have great medical technology it’s time the average person has access to it.

Living a life waiting for your knee to collapse is no fun, it’s poor quality and when there are alternative options that could help if you qualify why are we forced to suffer.!!

Posted in Ahlbacks Disease, Ancestry, Arthritis, AtomicBlonde, Avascular Necrosis, Awareness, Blessed, Bone Health, BreakThroughCrew, Chronic Pain, Clinical Trials, Diagnosed, Eat Healthy, Factor V Leiden, Food, Happiness, History, Inflammation, Life, Mindfulness, OA, osteoarthritis, Osteonecrosis, Osteoporosis, Pain, SONK, SPONK, Stem Cell, StopTheClot, Uncategorized, WegoHealth

Bone & Joint Action Week October 12-20

Bone and Joint Action Week is held annually October 12-20 with activities focused on disorders including arthritis, back pain, Osteonecrosis,Osteoarthritis trauma, pediatric conditions, and osteoporosis. The themes and their related activities are designed to raise awareness worldwide about prevention, disease management and treatment.

Statistics on Avascular Necrosis (AVN, Osteonecrosis, Aseptic Necrosis, Ischaemic Necrosis, Femoral Head Necrosis)

Frequency depends on the site involved. The most common site is the hip; other locations include the carpals, talus, and humerus. In most countries, exact figures on incidence and prevalence are unknown.

One Japanese survey estimated that 2500-3300 cases of AVN of the hip occur each year; of which, 34.7% were a result of corticosteroid abuse, 21.8% to alcohol abuse, and 37.1% to idiopathic mechanisms. A French study reported AVN in 4.3% of allogenic bone marrow transplant recipients.

Race: No racial predilection exists except for AVN associated with sickle cell disease and hemoglobin S and SC disease, which predominantly are diagnosed in people of African and Mediteranean descent.

Sex: The male-to-female ratio depends on the underlying cause, although primary AVN is more prevalent in men. The overall male-to-female ratio is 8:1.

Age: Age at onset depends on the underlying cause. Primary AVN most often occurs during the fourth or fifth decade and is bilateral in 40-80% of cases. On average, women present almost 10 years later than men.

Risk Factors for Avascular Necrosis (AVN, Osteonecrosis, Aseptic Necrosis, Ischaemic Necrosis, Femoral Head Necrosis)

Avascular necrosis has several causes. Loss of blood supply to the bone can be caused by an injury (trauma-related avascular necrosis or joint dislocation) or by certain risk factors (nontraumatic avascular necrosis), such as some medications (usually steroid basesd), steroid abuse in general, blood coagulation disorders like sickle cell, Factor V, FactorViii, MTHFR, eNOS and more, chemo and radiation infections in the Bone vascular issues such as vascularitis or alcohol abuse. Increased pressure within the bone also is associated with avascular necrosis. The pressure within the bone causes the blood vessels to narrow, making it hard for the vessels to deliver enough blood to the bone cells.Many deep sea divers get Avascular Necrosis from a condition known as the bends. Gaucher disease.

Progression of Avascular Necrosis (AVN, Osteonecrosis, Aseptic Necrosis, Ischaemic Necrosis, Femoral Head Necrosis)

Hip Stages of avn-on


The natural history of osteonecrosis is directly linked to the size and level of the necrosis. Very small lesions (involvement of less than 15% of the femoral head) may resolve without any further treatment. Conversly, lesions involving greater than 50% of the femoral head progress to collapse, and ultimately require in total hip arthroplasty.

Symptoms of Avascular Necrosis (AVN, Osteonecrosis, Aseptic Necrosis, Ischaemic Necrosis, Femoral Head Necrosis)

In the early stages of avascular necrosis, patients may be asymptomatic. However, as the disease progresses most patients will begin to experience joint pain; at first, only when putting weight on the affected joint, and eventually even when resting. Pain usually develops gradually and may be mild or severe.

If the level of necrosis progresses further and the bone and surrounding joint surface collapse, pain may develop or dramatically increase.

The pain may be severe enough to limit the patient’s range of motion in the affected joint.

In some cases, particularly those involving the hip, disabling osteoarthritis may develop.

The period of time between the first symptoms and loss of joint function is different for each patient, ranging from several months to more than a year.

How is Avascular Necrosis (AVN, Osteonecrosis, Aseptic Necrosis, Ischaemic Necrosis, Femoral Head Necrosis) Diagnosed?

In the earliest stages of Avascular necrosis plain x-rays are often normal. A magnetic resonance image (MRI) is the key that allows us to detect AVN at its earliest stage.

Osteonecrosis develops when the blood supply to a segment of bone is disrupted. Without adequate nourishment, the affected portion of bone dies and gradually collapses. As a result, the articular cartilage covering the bone also collapses, leading to disabling arthritis.

Osteonecrosis of the knee can affect anyone, but is more common in people over the age of 60. Woman are three times more likely than men to develop the condition.

Risk Factors

It is not always known what causes the lack of blood supply, but doctors have identified a number of risk factors that make someone more likely to develop osteonecrosis.

Injury. A knee injury—such as a stress fracture or dislocation, meniscus tear, bruised patella or combined with some type of trauma to the knee, can damage blood vessels and reduce blood flow to the affected bone.

Oral corticosteroid medications.

Many diseases, such as asthma and rheumatoid arthritis, are treated with oral steroid medications.

Although it is not known exactly why these medications can lead to osteonecrosis, research shows that there is a connection between the disease and long-term steroid use. Steroid-induced osteonecrosis frequently affects multiple joints in the body.

Medical conditions.

Osteonecrosis of the knee is associated with medical conditions, such as obesity, sickle cell anemia, and lupus.

Transplants. Organ transplantation, especially kidney transplant, is associated with osteonecrosis.

Excessive alcohol use.

Overconsumption of alcohol over time can cause fatty deposits to form in the blood vessels as well as elevated cortisone levels, resulting in a decreased blood supply to the bone.

Chemo therapy and radiation Non-traumatic osteonecrosis of bone is recognized as a potential complication in solid-tumour cancer patients receiving treatment with cytotoxic chemotherapy.

Regardless of the cause, if osteonecrosis is not identified and treated early, it can develop into severe osteoarthritis. And for some with osteoarthritis before avn the disease is even more painful.

Knee stages of avn-on
















Thank you for visiting

If you found this information helpful please subscribe, like and share anything you see in here.

Together we can make a difference and help so many Men ,Women and Children.

Have a blessed and Pain-free Day.

Posted in Arthritis, Avascular Necrosis, Awareness, Blessed, Bone Health, BreakThroughCrew, Clinical Trials, Diagnosed, Eat Healthy, Eye Exam, Factor V Leiden, Flush not Blush, Inflammation, Life, Meditation, Mindfulness, osteoarthritis, Osteonecrosis, Recipes, Stem Cell, StopTheClot, Uncategorized, Vision, WegoHealth, WEGOHealthAwards

Would appreciate your vote.

Just 2 days left to cast your vote , you can vote for each category I was nominated for. I would appreciate it very much.

Please take a moment to vote for me.

Link to vote.



Posted in Arthritis, Avascular Necrosis, Awareness, Blessed, Bone Health, Cardiovascular, Chronic Pain, Diagnosed, Disclaimer, Eat Healthy, Factor V Leiden, Flush not Blush, Food, Homemade Syrups,Tinctures,Rubs, Inflammation, Life, Meditation, Mindfulness, OA, osteoarthritis, Osteonecrosis, Pain, Positivity, Rosacea, Stem Cell, StopTheClot, Support Group, Hope, Uncategorized, Vegetables, Vision, WegoHealth

I Am A Patient Leader to Help and Empower Others ~ WEGOHealth Awards 2017

 I would really appreciate your vote. Please read my story and why I became a patient leader and advocate. ThankYou.

I am so excited to announce that I have been nominated for several of the WEGO Health Awards in the


Annual WEGO Health Awards.

WEGO Health is a mission driven company connecting healthcare with the experience, skills, and insights of patient leaders. They are the world’s largest network of patient leaders, working across virtually all health conditions and topics.

Click link below to learn more about their

Patient Leader Network.

The WEGO Health Awards were created to celebrate those who tirelessly support the mission of WEGO Health: to empower the patient voice.

With 16 award categories, the WEGO Health Awards are the only awards across all conditions and platforms, that recognize the over 100,000 yep one hundred thousand inspiring Patient Leaders who raise awareness, share information, and support their communities but often without recognition.

I was diagnosed with osteonecrosis also known as avascular necrosis in late 2014. I was told it was due to the trauma I suffered to my knee(medial meniscus tear)

I remember how I felt, I remember how afraid I was and also a feeling of hopelessness.

If doctors couldn’t help or fix me or even try what was I to do.

I never want anyone to feel that way starving for answers to questions about a new diagnosis and no place to go and no one willing to take the time to explain your new diagnosis. I new others had to be feeling the same way as I was and what an awful feeling that was . Sure I have support from my family but they don’t really understand the pain no one can unless you have it.

So I started the support group Avascular Necrosis/Osteonecrosis Support Int’l to be a safe haven if you will, for anyone that suffers from the disease. On occasion we also allow a family member in the group if the member is comfortable with that so they can also see how this disease/disorder effects people, so they can learn from awareness and education, to have an idea just the type of pain their family member has.

The physical and psychological effects can be debilitating and isolating. Especially when you have what I refer to as a flare up of pain. You can’t plan to go to that wedding next month, you don’t know how you’ll feel in an hour.

The pain can be constant day and night pain or come at any time out of nowhere or in waves and they’re quite perturbing. It’s like a hot lightning bolt and a sledge hammer hitting you at the same time and it can be shocking to those around you,because you end up maybe screaming or yelling,sometimes swearing or just overall mood change because the pain is so intense words truly cannot describe. Some words are hot stabbing shooting debilitating and yet frozen , tourniquet like cutting off your blood supply cold pain that’s what we feel.

Its not just the pain that affects us , but also the sadness or depression that can often come with it. When we think about the future and pain gets in the way of all our plans expectations, it’s a bit shattering.

Everything seems to sort of fall apart and right now you can see only the broken image of the new you .

It’s like looking in a shattered mirror all these different fragments that no longer make you whole.

My life became very fragmented and it was a moment to moment thing because I didn’t know how I would make it through that particular day or make it through what’s going to happen tomorrow. When I was first diagnosed my mind was all over the place.

I’m not terminal but I felt like I was , because my life as I once knew it was done…over.

No doctor I saw had any plan of action to help me in fact I was told we will wait until the joint collapses then replace the knee . Talk about mind blowing!

Osteonecrosis took my career in optical which I loved. It took my hiking in the woods away which I enjoyed. It limits me which I hate. But it’s also given me a new purpose and that is spreading awareness, discussing new treatments, the chance to educate , and reaching out to others. I am a patient leader and activist. Making the invisible, visible

If you allow it, the pain and mental shit you go through when you live in pain and with a rare disorder to boot whether it’s constant or sporadic it can be toxic to the mind and soul sucking.

God forbid don’t ask for pain meds.

When I was first diagnosed my first Ortho said the pain will get intense as if it wasn’t already but I don’t give pain meds. I wondered how bad will it get? I’m already in such pain I can barely stand it. Thankfully my family doctor gave me some pain medicine.

It helped but I don’t want to take it. I’d much rather find out how to fix me.

I’m not some junkie looking for a fix, hell I don’t even want to be at a doctors office.

I would much rather be working or frankly doing anything but sitting in a doctors office.

There is so much stigma that goes along with having chronic pain .

The generalization that everyone is claiming they are in pain just to get drugs is unfair and incorrect, and I think we have to be very careful because pain for most of us is invisible,to others.

When we are out of balance mind ,body , and spirit it makes it so hard to focus.

It makes anything and everything worse.

So we have to change our mind set,respect and do what we can to help our body,and interact with others.

Usually I think people will find that in a support group even if they don’t talk they can listen to people who have the similar experiences, frustrations , challenges,pain, treatments or lack of treatment availability or just simple acknowledgement of I know what your going through, many days is a great help.

And it’s very hard to find that outside a support group.

I never insist a new member speak unless they want to. Some are just so devastated by the diagnosis that they have no words. When I see a new member especially a newly diagnosed one, my heart just knows how much fear they have and how afraid they are. I always let them know that can say anything here and it will remain here. But if they are not ready that’s fine to.

I also offer to send them a copy of a booklet I wrote about avn/on.

I know later their words will come. Right now they need to know they are not alone.

I also raise awareness by several

FB pages



Personal Blog on word press and blogger

That’s why I am a patient leader and activist.

Here is the link to my WegoHealth profile.

I would appreciate your vote.

You can vote daily up until September 1, 2017.

Here is link

Thank you

Current Nominations in The 6th annual WEGO Health Awards



Please share this if you would be so kind.

Social Footprint

What is osteonecrosis?  The term literally means bone death -osteo =bone necrosis=death.

Posted in Arthritis, AtomicBlonde, Avascular Necrosis, Awareness, Bone Health, Chronic Pain, Diagnosed, Disclaimer, Factor V Leiden, Flush not Blush, Happiness, Inflammation, Life, Meditation, Mindfulness, OA, Osteonecrosis, Positivity, Rosacea, Stem Cell, Support Group, Hope, Uncategorized, WegoHealth

From Optometric Tech /Optician To Professional Patient & Patient Leader

If you have a chronic condition or illness you may already know and understand what it feels like to be a professional patient.

Between the physical pain and symptoms and emotional symptoms, the constant doctor appointments in search of that one person knowledgeable enough to help vs refer you to yet someone else and the numerous tests and procedures (not to mention having to keeping track of all of it & all the bills that go with it ) having a chronic condition can become a full-time job and to be honest it’s more exhausting than a good day’s work.

Speaking of work.
You may find yourself needing to cut back on hours at work , go to part time or stop working altogether.

Although this may be a necessity for you and your health, other people don’t always understand why you’re not working.
They may have these crazy misconceptions that you’re now somehow slower , lazy on vacation or lucky not to have to go to work .

Those of us with chronic conditions know, this is so wrong .
And we need to say this for those who don’t understand what we feel or go through. Maybe then people will be less judgmental.

So here is what most people don’t know or understand about not working due to chronic condition or illness.

I personally would much rather be at work.
People look so surprised when I tell them that, some act as if I’m off on some luxurious vacation.
They have no idea that I’m probably home.

So yes, I’d rather be at work because being at work means I’m healthy again.

Logically I know that one good day doesn’t mean I have to ability to hold my full time job again , but its nice to hope I will be back to work someday.

I wish people knew how much I miss my job. I stayed far longer than I should have and probably did more damage to my knee than I needed to, because it was such an important part of my life.

I lost 90 percent of my social life when I left my career and now being at home mostly all day every day is incredibly isolating, not to mention how guilty you feel not doing your part. Every day I hope that I’ll be able to work again someday soon , there are only so many episodes of a tv show a person can watch , I am writing a book and I do take classes.

Being on disability and trying to get the best treatment is a full-time job.
I fill out paperwork constantly new doctors , more questions than answers.

Researching new treatments and the cost only to find great new Like about stem cell injections helping my Osteonecrosis but then being let down seeing that it’s 5-10k and never covered by insurance.

Then the frustration and sadness sets in because I live in America and I paid into Medicare and my share of taxes. And yet the government continues to hold up proven treatment that could help tens of thousands and yet some countries allow the cost of stem cells for their patients.

I also think many people see me and because I wear a little makeup and curl my hair, I think she doesn’t look disabled or ill. They don’t see me on the days I can barely move .
The days I need help going to the store because it gets so cold in the winter here in Ohio I am literally like concrete and in a great deal of pain.
Thank God Giant Eagle grocery store has a new shop for you curbside express.
You will be utilizing it this winter.

I try to be positive even when I’m in pain. I have a disease that is called Osteonecrosis due to trauma to the bone which has left me with a lack of blood supply to the knee.If you don’t have AVN/ON you won’t ever understand my pain.
I also have Spondylolisthesis L5S1 spine issues.
And Osteoarthritis another painful bone condition then add Spondylolisthesis,Hypothyroidism and Rosacea to the mix

Even though I get disability I do feel guilt now and then. I feel like I’m not contributing financially to my marriage and to be honest I miss working and making my own money.

My husband reminds me that he loves me and I would be doing the same for him if it were reversed and he’s right.

Being home all the time can be really lonely. If I had the energy and the physical stamina to be out and work, everyday life would be more fun again.

The isolation from limited human interaction is challenging so I started to take a few classes here or there, attend a seminar for this or that and meet new people. I’m going to be a health coach.

I find things to keep me and my mind busy.
I have a support group for Osteonecrosis.

I find that the spondylolisthesis is the more st painful of the few conditions I have, and the pain from Osteonecrosis is being managed mostly but it has its flares.

Osteoarthritis the stiffness is really indescribable.

But I make my own pain rubs and herbal remedies you can find many in this blog. But more will be in my book.

I became a patient leader and advocate.
I wrote a booklet about the Avascular Necrosis/Osteonecrosis
And I blog and I’m writing a regular ebook and it should be completed by the end of the year.
link to blog

I would love to find a decent work from home job.

Trust me, I would love to hold down a regular job in the optical field again.

No one realizes that a job does more for you than just pay your bills. It is part of what gives you self-esteem.

People always want you to be there for them, but are they ever there for you? Most of the time no.

I’m bored out of my absolute mind. I loved working and until my pain got bad, my job actually took my mind off it for the most part.

So next time you see your friend or family member that’s on disability don’t envy them.

Maybe remember to call them a little more often.

And let’s hope someday the government will help people get their life back by adding stem cell injections to all forums of insurance.

Posted in Arthritis, AtomicBlonde, Avascular Necrosis, Awareness, Blessed, Chronic Pain, Disclaimer, Eat Healthy, exercise, Factor V Leiden, Flush not Blush, Food, Gluten Free, Happiness, Herbal, Homemade Syrups,Tinctures,Rubs, Inflammation, Meditation, Mindfulness, OA, Osteonecrosis, Positivity, Rosacea, Stem Cell, StopTheClot, Support Group, Hope, Uncategorized, Vegetables, Vision

Get To Know Me

Hi, I'm Debbie and I have Avascular Necrosis/Osteonecrosis, It's a rare disease/disorder where you have a temporary or permanent loss of blood supply to the bone.
I developed my avascular necrosis/osteonecrosis after I suffered a meniscal tear. I'm lucky and very grateful because the doctors don't feel it will go to any other joints . Others including small children are not so fortunate.

We need more research on so many levels and trials.

I love to learn.
I love to educate
I love to help people realize their is always hope.
I have started to go to a more plant-based diet to help the pain caused by inflammation.

However I still will eat meat once a week no more than 2x a week.

I also personally take supplements all ok'd by my PCP

Vitamin D varies from 2000 to 5000 iu a day based on lab results

CoQ10 400mg a day

CuraMed Curcumin 375mg my
Ortho had me start with 1 in a.m and 1 in p.m for the first week, then take 1 a day.

Krill Oil – Not Fish oil
I buy Antarctic Krill Oil Platinum by 1MD because it's top quality.

Krill and fish oil similarly contain EPA and DHA, but they differ in the way that the omegas are bonded. The omegas in krill oil are mostly bonded to phospholipids while in fish oil they are bonded to triglycerides. The fat cells in humans are also in phospholipid form. A study done on the metabolic effects of krill oil concluded that the omega-3s from krill oil may be more readily and effectively absorbed after ingestion and distribution into the bloodstream.

I have gone from eating food that really wasn't that healthy to eating mostly plants real food. To help my body by giving it the best nutrients possible.
I have to say my pain has decreased.
I will have a cheat day now and then.
But when you get used to eating good healthy food anything other than that just doesn't taste as good.

So I will be posting various recipes on my main blog and sometimes here as well , ones that I tried and loved as well as some information about myself and about Osteonecrosis aka Avascular Necrosis and a few other things

I Research a lot of things
Factor V Leiden Heterogeneous
Clinical Trials
Stem Cell and Prolotherapy

I love history and being outdoors

One thing I know I will do again someday is hike . Since diagnosed with Avn I haven't lived or hiked as much as I used to do to limitations because of bone problems.

I love learning and applying new things into my own life.

I truly believe we can help our pain and diminish symptoms and heal our own body most of the time if not all the time.

We just need the right tools and the know how.

My Links

Facebook Main Profile

Main Blog

YouTube Awareness Videos

New Blog on Google 3/8/2017

Link to Mini Fact Videos



FB Information and Awareness Pages Bone info and Joint of the Day




Facebook Link

NewMorning Talk Anyone who wants to do a f b live via a guest message me. Various topics health, pain, food

Posted in Arthritis, Avascular Necrosis, Awareness, Blessed, Bone Health, Cardiovascular, Chronic Pain, Diagnosed, DNA, Eat Healthy, Factor V Leiden, Happiness, Homemade Syrups,Tinctures,Rubs, Inflammation, Mindfulness, OA, Osteonecrosis, Positivity, Stem Cell, StopTheClot, Support Group, Hope, Uncategorized, WegoHealth

~Health  Awards ~ Advocate Nominee 

I was notified about a month ago I was nominated for a few awards in a few categories for awareness I vowed when diagnosed with avn /on I would never want anyone to feel as alone and scared as I did in 2014.

My Ortho who diagnosed me really never took the time to even explain to me what I had, or come up with any positive plan of action. He did say when I asked when the plan was …..we will wait until your knee collapses and the replace it !!

Are you frickin kidding me!! That was his plan of action.

Well thank god my knee still is hanging in there and no sign of collapse and when it does happen if that happens he won't be doing surgery.

After the initial shock and grief I went through for what my life was and what may now be I vowed to be a world changer The Ortho also failed to tell me how rare this is and when I did my own research and found out how rare it was rare, it  left me feeling even more alone.

Sure my husband was and family were supportive but they had no clue what I had 

I also have a few other medical issues 

Osteoarthritis Spondylolisthesis Hypothyroidism , Factor V, Rbbb.

And I advocate for all and then some. 
I don't want anyone who was diagnosed with anything to ever feel alone. 

But when you have an orphan disease it just makes it harder some days to deal with. 

It's not like heart disease or cancer where there is constant education, awareness and research being done. 

I hope to change that. Osteonecrosis aka Avascular Necrosis had no cause ribbon so I made them, designed them. Now we have one

There was little information I changed that, I wrote a booklet for patients who have or are just diagnosed with Avascular Necrosis/Osteonecrosis 

I stay up to date on new treatments, trials

I also compiled an ongoing list of doctors not just locally but world wide who are knowledgeable in Avascular Necrosis/Osteonecrosis.

I am so honored to have been nominated 

I was nominated for 8 or 9 different categories and I am asking for your support(vote).

I would greatly appreciate it. 

Also there are so many other wonderful nominees maybe you could also give them a vote as well
Here is how it works 

Click below link

You will come to my wegohealth leader profile 

When you click endorse you will have the option to share it you don't have to but thanks if you do. 

It will then take you back to endorse screen so you can vote for the next award I am nominated for. 
As an advocate for Osteonecrosis and a few others things, like Osteoarthritis,Spondylolisthesis,Hypothyroidism, Heart Disease I take pride in all the research I do to raise awareness. 

I am a voice and resource in a rare community for those of us who are suffering with Avascular Necrosis/Osteonecrosis the orphan disease most people have never heard of unless your diagnosed.
I have the honor this year again of being nominated for many of the categories 16 health awards this year as a member of wegohealth.

Thank You In Advance.

Posted in Arthritis, Avascular Necrosis, Awareness, Chronic Pain, Diagnosed, Inflammation, Osteonecrosis, Stem Cell, Uncategorized

Top 10 Questions To Ask A Stem Cell Clinic 

Having Osteoarthritis and Avascular Necrosis/Osteonecrosis I have done a ton of research so I know what questions to ask. 

Being a health advocate and activist I always try to keep my information update and fresh. 

Because many don’t know how to speak up, some are shy or their Doctor may be that stern matter of fact kinda person. 

Research has shown Stem Cell injections helps Osteonecrosis in early stage to help avoid surgery and aids in healing in later stages used with surgery.
Stem cells have tremendous promise to help us understand and treat a range of diseases, like Osteoarthritis, Osteonecrosis Acl and meniscus injuries and  many many other health-related conditions. Their potential is evident in the use of blood stem cells to treat diseases of the blood, a therapy that has saved the lives of thousands of children with leukemia; and can be seen in the use of stem cells for tissue grafts to treat diseases or injury to the bone, skin and surface of the eye. Important clinical trials involving stem cells are underway for many other conditions and researchers continue to explore new avenues using stem cells in medicine.

But they are so darn expensive and how do you know the place you go for stem cell injections is cutting edge ?
I found an article written by 

Dr  Chris Centeno of Regenexx  which will help many who didn’t know what to ask. 
Top 10 questions to ask a stem cell clinic By Chris Centeno 

Some questions for orthopedic stem cell providersOrthopedic stem cell providers are not all created equal. When making the decision to put all of your trust into a stem cell clinic and physician, it’s important that you know the right questions to ask—and just as important that you know whether or not you’re getting the right answers. Our top 10 questions to ask a stem cell clinic will help you scope out – based on questions orthopedic stem cell providers should be able to answer – at least what type of clinic has the greatest chance of accomplishing what you’re paying them to do.
1. How much experience do you have?

Experience is everything in medicine: the more a surgeon or physician has practiced a particular skill, the better the outcome and the fewer the complications. For most surgical procedures, for example, surgeons will consider themselves competent after 20–50 procedures. They won’t usually consider themselves an expert unless they’ve done a procedure two hundred times or more.
Procedures that use stem cells to treat arthritis are no different. Ask your physician how many stem cell based procedures of the type you need he or she has done.
Bait and Switch: Physicians at some clinics will talk about the number of procedures they’ve done that involve PRP (platelet rich plasma); make sure your provider gives you the specific answer for stem cell based treatments. We’ve also seen new providers list the total number of surgical procedures they have performed (that didn’t involve stem cells).

2. What kind of data do you collect and report?

Where’s the data? Stem cell treatments for arthritis are pretty new: most doctors classify them as “investigational care,” meaning that the techniques are not yet fully understood. That’s not something that should scare you as a patient—after all these years, we still don’t fully understand how aspirin works in the body—but it does mean that data should be collected by the clinic at all times. The data collected should go beyond a simple phone call after the procedure. Providers should want you to complete a questionnaire that will ask you about your pain level before and after the procedure, how well you can use the affected joint now that the procedure is finished, and whether or not there were any complications from the procedure.
Ask what information the clinic collects and where this information is located on their web site. Investigational care results should be indexed in a registry, which is an organized place to collect data on that specific procedure. This registry allows other physicians to review the data and allows the medical community as a whole to improve its techniques and the practice of medicine.
Also, ask if there are any publications in medical journals regarding this specific procedure. This is an area to be careful with as some less-scrupulous clinics may “borrow” the studies of other procedures that aren’t actually the same as the procedure they want to do on you, such as using research on bone marrow stem cells instead of the fat stem cells the clinic is actually using. If there isn’t a large amount of data for your particular procedure yet, ask where you can read about their previous history with this procedure—both their successes and their failures. Clinics that are involved with investigational care should post information from their registry about all of their patients, even those who didn’t respond to the treatment.
In summary, it all comes down to one simple issue. Where is the data that this clinic has collected on this specific procedure on their website? Where is the patient infographic that shows results? Where are the publications? By the way, you can find ours under the research tab above.

3. What’s your physician specialty?

Physician specialty matters. As a musculoskeletal specialist, I have in the past used Botox to treat a medical condition called dystonia. Sometimes, one of my female patients will ask me to perform a cosmetic Botox treatment. I probably could, but I won’t because I’m not a cosmetic dermatologist or plastic surgeon, which means I don’t have the specialized training these physicians go through to achieve the best results for their patients.
Medical specialties exist for a reason. I have thousands of hours of specific training in nonoperative orthopedics, and while I could certainly deliver a baby in an emergency, that’s not my specialty. If something goes wrong with the delivery or there are complications, I would certainly do the best I can, but I don’t have the specific training that an OB-GYN has. By the same token, while your plastic surgeon or family care physician has thousands of hours of specific training in his or her specialty, this physician doesn’t have the specific training or experience with orthopedic procedures in general or with orthopedic stem cell procedures specifically.
Specific training means better results. Ask your physician if he or she is board-certified in a specialty that is specifically trained to perform injection-based care into joints. A board-certified physician who specializes in sports medicine, physical medicine, or interventional pain treatment has the specialized training and experience to do these procedures correctly. While some orthopedic surgeons have undergone extra injection-based training using guidance to perform these procedures, most have not. You would think that a surgeon should be able to perform a complex injection, but many still perform these procedures blind. So if an orthopedic surgeon is performing the injection, make sure that he or she has extensive training in guided injections under ultrasound and/or fluoroscopy.

4. What cell source are you using?

Cell source is important. Stem cells are located in just about every part of our bodies, but not all stem cells are the same. The specific type of stem cells that are used to treat knees, hips, shoulders, and ankles can be obtained from several sources—the most common sources are adipose tissue (the layer of fat we all have beneath our skin), and bone marrow. For some issues, such as mild joint arthritis or a partial rotator cuff tear, the platelets found in blood can help, but for larger areas of involvement, the platelets in blood are usually not sufficient.
This leaves bone marrow and adipose tissue as possible stem cell sources for joints and tissues that are more degenerated Adipose stem cells may be able to help in orthopedic conditions, but in head-to-head studies with bone marrow stem cells, they are less able to repair joint tissue like cartilage. Bone marrow is the best source for stem cells to be used to help cartilage health.
“Amniotic stem cells” have become an epic case of widespread consumer fraud. The problem? The vials of amniotic, placental, or fetal tissues being used by clinics offering this type of stem cell treatment don’t actually contain any living cells (companies manufacturing these off-the-shelf products are required to actively kill all of the cells in them with gamma irradiation). That, however, hasn’t stopped unscrupulous or less-than-knowledgeable clinics from claiming that the patient is getting injected with millions of live stem cells. Hence, any clinic claiming to use amniotic stem cells to treat orthopedic conditions should be avoided as they’re really injecting a bunch of dead baby tissue.
When you talk with your provider, ask the physician where he or she harvests the stem cells from. If the physician only takes stem cells from fat (adipose stem cells), then the clinic you are in is not primarily focused on orthopedic issues or is not staying up to date with the science behind the procedures. There have been some less-reputable plastic surgery and age-management clinics that are starting to offer stem cell treatments for orthopedic issues. These clinics only harvest stem cells from adipose because they aren’t trained to perform stem cell harvesting from bone marrow.

5. What harvesting technique are you using?

Harvesting technique is critical. Stem cells are removed from the body, or “harvested,” in several different ways. The stem cells that are the most useful for orthopedic care are found in bone marrow. The methods used to harvest these cells are critical to the success of the procedure. For fat stem cells, physicians use liposuction to harvest the stem cells. The harvesting of stem cells from bone marrow requires a technique called bone marrow aspiration.
Bone marrow aspiration is a procedure that requires a great deal of experience. Because bone marrow is the richest source for stem cells that are the most useful for orthopedic issues, it is important to actually harvest bone marrow, yet this is difficult without some form of imaging guidance. If your physician does not use some sort of imaging to guide his or her work (either fluoroscopy or ultrasound), there is a significant risk that he or she will aspirate blood with no stem cells instead of bone marrow with stem cells. Additionally, if a physician only harvests from a single spot (rather than multiple sites in the bone), the physician runs the risk of getting fewer stem cells, even if he or she does get bone marrow aspirate.
Also make sure that you ask if the clinic uses a cell biology lab or a tool on-site to confirm that it has harvested actual stem cells (see number 6 for more).

6. Do you count the cell dose in the sample?

Dose in medicine is key. In stem cell therapy, the issue of whether you’re getting enough cells to maximize the chance of a successful treatment is an epic fail on the part of most clinics. 
After stem cells are harvested, they are processed to remove the less-useful tissues and concentrate the fraction containing stem cells. They may also be cultured, which means that the stem cells are placed in an environment that encourages them to multiply.
We’ve seen a lot of clinics that offer stem cell treatments where the cells are processed in bedside kits—small machines that centrifuge, or shake, the tissue, to isolate a stem cell rich fraction. The vast majority of clinics that use these bedside machines have no idea how much of what they inject back into you is actually stem cells because they can’t count the cell content of the samples they’re injecting.
As an example, based on our dosing research, only about one in three to one in four older patients have enough stem cells to inject both knees. Since we count the cells, we know who doesn’t have enough. In addition, since we use sophisticated stem cell harvest techniques, we can adjust that procedure to obtain more cells. Compare that to a clinic that has no idea how many cells you have or how many you need. Are you willing to spend big bucks on a treatment and then flip a coin as to whether you had enough cells to treat all of your problems?

7. How do you make sure the stem cells are placed where they’re needed most?

The stem cells must hit the bull’s-eye. Your physician must know how to accurately and precisely inject your stem cells into the actual damaged or degenerated area to be optimally effective. Even being off by as little as an eighth of an inch may make the difference between a successful outcome or continued pain and dysfunction of the joint.
Make sure your provider will use some form of imaging (fluoroscopy or ultrasound) to guide the injection. Run away if the clinic is using a “blind” injection technique. In addition, make sure you know the difference between highly precise injections under guidance and “in the neighborhood” is good enough. Or as I call it, the sharpshooter vs. the shotgun approach.
Many clinics that do use guidance will place the cells anywhere they can easily reach in the joint (the shotgun). Other clinics will have advanced training on how to place cells in a specific structure (the marksman or sharpshooter). For example, in a shoulder, the shotgun approach is placing cells in the back part of the main joint under ultrasound or the front using fluoroscopy. However, the marksman has the advanced training using either or both technologies to place cells in the superior labrum where the biceps attaches.
Why pay for a blind injection or even a shotgun approach when you can have your cells precisely placed where they’re needed most?

8. Are you using medicines or common additives that kill stem cells?

Some common medications and additives can kill stem cells. These come in three flavors: anesthetics, steroids, and other medications.
Many providers use local anesthetics to numb the area. However, the most common local anesthetics kill stem cells. Ask your provider if the medicines he or she is using come in contact with the stem cells. Sometimes this is unavoidable, but there’s only one anesthetic that’s safe for cells, an obscure OB-GYN anesthetic called ropivicaine (that’s not commonly found outside of the baby-delivery area). If your provider is using lidocaine or bupivacaine/Marcaine to numb the joint or other area, that’s a problem. It also shows a lack of knowledge and sophistication with the procedure that’s problematic.
Steroid injections into joints are commonplace, but they regrettably kill cartilage and other cells when injected in the massive doses that are commonly used. In the same way that steroid shots kill all local cells, they will also kill stem cells. There should be at least 6–12 weeks of time separating a steroid injection from a stem cell injection. In addition, if the doctor does more steroid injections in his or her practice than PRP or stem cell injections, you may want to look elsewhere as that provider is sacrificing patient outcome for the convenience of a procedure that an insurer will cover. Finally, while milligram-dose steroid injections kill cells, specially compounded nanogram doses (one million times less), can help cells. However, outside of a few providers, 99.999% of doctors use the high-dose variety that kills cells dead.
Lastly, many prescription medications have negative effects on stem cells. We’ve developed a list based on years of observation on which meds make it harder for stem cells to propagate in culture. If a physician has no experience growing stem cells, he or she has no list of medications that you shouldn’t take. This is despite the issue that staying on a prohibited medication likely reduces your chance of a successful procedure.

9. How sophisticated is your cell lab?

Level of lab sophistication matters. Most physicians’ offices don’t have an on-site lab, but even if they do, not all labs are equal. A dedicated cell biology lab will have equipment that a regular doctor’s office simply does not need because this equipment is absolutely vital to giving you the best possible outcome.
The first question to ask about the clinic’s cell lab is if they use an “open” or “closed” system. A “closed” system keeps tissue samples in a germ-free environment, inside a clean hood. An “open” system exposes tissue samples to open air, where they are susceptible to being contaminated by bacteria in the air.
A dedicated cell biology lab will also have devices that allow doctors to count cells. Cell biology labs also use air quality checks, sterility checks of clean areas, and protective gear for the technicians in order to give the highest possible assurance that your stem cells will be protected from contamination.

10. What’s your success rate, and am I a good fit?

Avoid hype about lack of complications, too-good-to-be-true success rates, and candidacy.
Even the best and most successful clinics have patients who do not respond as well as can be hoped, and even the most careful physicians have patients who develop complications. Unfortunately, in the field of medicine, these things happen. Physicians do absolutely everything in their power to minimize these risks as much as possible, and some aspects of patient care are beyond a physician’s control.

Physicians or clinics that tell you they have a 100% success rate or close to it are, frankly, lying or rigging the numbers. Even the best stem cell clinics have a success and failure rate. Ask your stem cell provider what his or her success rate is for the stem cell procedure you’re considering. If the provider ’s answer includes a frank discussion of the chances that the procedure will fail, then you have a physician who is being honest.

Every honest physician should also be able to tell you whether or not the procedure he or she is offering is a good fit for your particular condition. Every patient is not a good candidate for every procedure. 

Ask the question, “What percentage of patients have you turned away or told that they were a poor candidate for this procedure?” If you get a blank stare or silence or if you believe the only test the physician uses to evaluate you for a stem cell procedure is your credit rating, run out of that office as fast as you can, and don’t look back. 

In addition, ask what your candidacy rating is based on. Meaning does the clinic use its own registry data to see who is a good or bad candidate? Also ask where can you find that data.

Knowing the top 10 questions to ask a stem cell clinic can make the difference between a successful and an unsuccessful treatment. There are qualified orthopedic stem cell providers out there, and unqualified ones. 

Hopefully knowing what questions orthopedic stem cells providers should be able to answer will help you find the ones that can actually help you.

Info posted and shared from Regenexx web site


Debbie’s List. 

My recommendations based on all the information I have researched. I have not had Stem Cell injections 

I have had a Prp injection

Great Places List will be added to as I learn more about the great doctors 

Regenexx all locations Main Number Colorado (888)5253005

Roidan Mackenna Institute  Number                   (877) 8997836

Dr Thomas Einhorn Office phone number (617)4145212

Posted in Arthritis, Avascular Necrosis, Awareness, Bone Health, Cardiovascular, Chronic Pain, Diagnosed, DNA, Eat Healthy, Factor V Leiden, family, Inflammation, Jamberry Nails, Laparoscopic Surgery, Life, OA, Osteonecrosis, Rare Disease Day, Stem Cell, StopTheClot, Uncategorized, WegoHealth

If you like my logo I’d appreciate a vote 

I just entered a  contest; help me get to the top of the leaderboard! 

I have Avascular Necrosis/ Osteonecrosis and the condition/disease is rare, so rare there was no cause ribbon for anyone to identify with. 

I created a few varieties and now the AVN community finally has a ribbon. 

My goal is to educate and provide hope and support to anyone suffering from this condition.
Mine was caused by trauma to the knee (medial meniscus tear) in 2014. 

So what is Avascular Necrosis? 

Avascular necrosis (AVN), also called osteonecrosis, aseptic necrosis, or ischemic bone necrosis, is a condition that occurs when there is loss of blood to the bone. Because bone is living tissue that requires blood, an interruption to the blood supply causes bone to die. If not stopped, this process eventually causes the bone to collapse.
Avascular necrosis most commonly occurs in the hip. Other common sites are the shoulder, knees, shoulder, and ankles. But AVN can attack any bone or joint anytime and age is not a factor 

Who Gets Avascular Necrosis and What Causes It?
As many as 20,000 people develop AVN each year. Most are between ages 20 and 50.  But young children are also affected it’s called Leg Calves Perthes 

For healthy people, the risk of AVN is smaller than someone with an underlying cause.  

Most cases are the result of an underlying health problem or injury. Possible causes include:

Dislocation or fracture of the thigh bone (femur). Tear in meniscus, tear in shoulder, etc…

This type of injury can affect the blood supply to the bone, leading to trauma-related avascular necrosis. AVN may develop in 20% or more of people who dislocate a hip.

Chronic corticosteroid use. Long-term use of these inflammation-fighting drugs, either orally or intravenously, is associated with 35% of all cases of nontraumatic AVN. 

Although the reason for this is not completely understood, doctors suspect these drugs may interfere with the body’s ability to break down fatty substances. These substances collect in the blood vessels making them narrower  and reduce the amount of blood to the bone.

Excessive alcohol use. Much like corticosteroids, excessive alcohol may cause fatty substances to build in the blood vessels and decrease the blood supply to the bones.
Blood clots, inflammation, and damage to the arteries. All of these can block blood flow to the bones.
Other conditions associated with nontraumatic AVN include:
Gaucher’s disease, an inherited metabolic disorder in which harmful quantities of a fatty substance accumulate in the organs

Sickle cell disease

Pancreatitis, inflammation of the pancreas

HIV infection

Radiation therapy or chemotherapy

Autoimmune diseases

Decompression sickness, a condition that occurs when the body is subjected to a sudden reduction in surrounding pressure, causing the formation of gas bubbles in the blood

Symptoms of Avascular Necrosis

In its early stages, AVN typically cause no symptoms; however, as the disease progresses it becomes painful. At first, you may experience pain when you put pressure on the affected bone. Then, pain may become more constant. If the disease progresses and the bone and surrounding joint collapse, you may experience severe pain that interferes with your ability to use your joint. The time between the first symptoms and collapse of the bone may range from several months to more than a year.
Treatment for Avascular Necrosis
The goals of treatment for AVN are to improve or ensure function of the affected joint, stop the progression of bone damage, and reduce pain.
The best treatment will depend on a number of factors, including:
Your age

Stage of the disease

Location and amount of bone damage

Cause of AVN

If the cause of your avascular necrosis is identified, treatment will include efforts to manage the underlying condition. For example, if AVN is caused by blood clots, your doctor will prescribe medications to dissolve clots. If inflammation of the arteries is responsible, your doctor may prescribe anti-inflammatory medicines.
If avascular necrosis is caught early, treatment may involve taking medications to relieve pain or limiting the use of the affected area. If your hip, knee, or ankle is affected, crutches may be necessary to take weight off the damaged joint. Your doctor may also recommend range-of-motion exercises to help keep the affected joint mobile.
While these nonsurgical treatments may slow the progression of avascular necrosis, most people with the condition eventually need surgery.
Surgical options include:
Bone grafts, which involve removing healthy bone from one part of the body and using it to replace the damaged bone

Osteotomy, a procedure that involves cutting the bone and changing its alignment to relieve stress on the bone or joint

Total joint replacement, which involves removing the damaged joint and replacing it with a synthetic joint

Core decompression, a procedure that involves removing part of the inside of the bone to relieve pressure and allow new blood vessels to form

Vascularized bone graft, a procedure that uses the patient’s own tissue to rebuild diseased or damaged hip joints; the surgeon first removes the bone with the poor blood supply from the hip and then replaces it with the blood-vessel-rich bone from another site, such as the fibula, the smaller bone located in the lower leg.