The OCD Book

[ocdnetadmin]

Buy the book on Amazon

Introduction

My aim in writing this book is to help others understand osteochondral defects in the ankle and how best to deal with their injury. As an OCD (osteochondral defect) ankle sufferer myself who has been to many ankle and foot doctors and undergone surgery, I've realized how little help and support is out there for people like us. If your experience has been anything like mine, which I hope it hasn't, then you have probably suffered disappointment, feelings of loneliness and frustration, anger, denial, grief, and resignation. Friends and family may casually disregard the extent of your injury, ignorant of how much pain your foot is in. Doctors may be curt and unable to relate to their patients, never having suffered an OCD injury themselves. Or maybe they're just too busy to explain everything to us or hold our hands through this difficult time. That's understandable. But we're still here, us OCD sufferers, with a need for knowledge and perhaps most importantly of all, support. I believe both are needed for a healthy recovery.

**Special Notes**
I am not a doctor, and the book's content is not an endorsement of any medical procedure or doctor and should not be taken as medical advice. 

This book is not meant to be a medical text. Complicated medical jargon in general is avoided, and when specific medical terms must be used, they're accompanied by definitions for easy comprehensibility. I've written in lay language that hopefully anyone can understand. This book is meant to be conversational and easy to read.

I intend to update this book periodically, and I humbly ask that you send me corrections, feedback, and suggestions for improvements so that I can make this book as comprehensive and helpful as it can be for all current and future ocd patients.

[ocdnetadmin]

What are osteochondral defects? Learning about your injury

Osteochondral defect, also called osteochondral dissecans and abbreviated as OCD,  is a joint condition in which a piece of cartilage, along with a thin layer of the bone beneath it, comes loose from the end of a bone.  It can result from trauma (ie. accident), or it can develop over time, and most often occurs in the knee, elbow, and ankle.

Ok, that's the wikipedia definition. Now for a simpler explanation.
Osteo = bone
Chondral = cartilage
So an osteochondral defect is a bone + cartilage problem.

Cartilage is a soft connective tissue in many parts of our body. Where it is connected to bone at numerous joints in the body, it is called "articular cartilage", (articular = of the joint). This articular cartilage lubricates the movement and flexibility of different bones that "connect". Osteochondral defect (OCD) is what we call what happens when something wrong occurs between the cartilage and the bone. The cartilage is separated from the bone, and sometimes the cartilage or bone are split into different parts, which then move around in the joint. As you can guess, this hurts a great deal, and is the cause of the ankle joint "clicking" and locking" noises.

Now let's examine the process in which an ankle sprain could lead to an OCD. If the sprain is particularly severe, the tibia (shinbone) and the talus (bone right below and connected to the tibia) may bump against, or chip, each other. This could create a "dead spot" where blood cannot flow to. Without blood, the bone dies, and eventually dissolves into the body. Now disconnected from the bone, the cartilage in the joint will be loose. If the cartilage is loose, it is not supported, and thus will be prone to damage. With the cartilage floating around, and possible bone fragments as well, this could cause even more damage. And that is how an osteochondral defect develops.

What are the causes of OCDs? 

Trauma, as in our ankle sprain example above, can cause OCDs to develop. Some people develop OCDs over time, perhaps through weakened joints from overuse, or a genetic predisposition of weak joints or inadequate nutrition. Other causes include abnormal bone growth or loss of blood flow.

How are OCDs cured or healed?

Unfortunately, OCDs typically do not fully heal. Some children develop OCDs and successfully recover from them, as their young bodies still growing bone. But as we grow older, our bodies' ability to grow cartilage becomes limited. Because we cannot grow new cartilage to replace our damaged cartilage, we must resort to surgery options which either stimulate new cartilage growth or implant cartilage into our joints.

These treatment options are covered in later chapters.

[ocdnetadmin]

Mental and Emotional Support

The memory of my first visit to a foot doctor is clear in my mind. I will never forget it. Before seeing her, I had been afflicted with an ankle OCD for a year. Not having health insurance meant I had to live with my injury without knowing what was wrong with it. Needless to say I had a lot of questions, but also pent up frustration. I wasn't expecting guidance and support from my doctor, but I sure needed it. I was impatient to get better and start playing basketball again and get my life back. But I didn't know the journey would be long and arduous. I was firmly set in my first stage of grief, denial. My doctor wanted to try conservative measures first, and I begrudgingly went along with her plan. Although she had told me what to do, I hadn't received the emotional support I desperately needed and craved. This unmet emotional need would later negatively affect my judgment and ability to deal with my OCD.

When I said that *emotional support* for our injury is a crucial aspect of maintaining our mental health, I was being dead serious. OCDs are a serious condition, involving potentially years of pain, invasive surgery procedures, many months of recovery, during which you are on crutches hobbling around on one foot, thousands of dollars of medical bills, and an incredible loneliness that comes from people around you not understanding what you're going through. To deal with all that, you really need to have mental strength - more strength than most people can bear alone. I highly recommend reaching out to friends and family, or other OCD patients online, and sharing your story and your burdens. This is not something you have to deal with by yourself. You are not alone.

One of the communities I run online is a special forum for OCD patients to share our experiences and support each other. You can reach this forum at [osteochondraldefect.net/forum](osteochondraldefect.net/forum).
Registration is free and the community of OCD-ers is small but growing. Feel free to join us. Besides the emotional support, there are many forum threads wherein our members share their OCD experiences and provide helpful and informative advice and perspective.

I can't reiterate how important it is to maintain your emotional and mental health in the face of what you must go through. Seek out any avenue of support you can and do not be shy about it. You need the help; the help is out there. Don't reject it. Isolating yourself is not the right path.

[ocdnetadmin]

Treatment options - Conservative and Microfracture

This chapter discusses the initial treatment options we have for dealing with our OCD.

**The Conservative Approach**
The first approach most people try is the "conservative" approach. The basic philosophy is to protect the ankle as much as possible, and see if the ankle improves. This is a "wait and see" approach. Doctors will recommend several protection methods. These can include medical foot boots, limited weight bearing via crutches, or immobilizing the foot.

To ease the pain, patients can take cortisone shots or anti inflammatory medication. In my experience, I was even able to return to playing basketball for brief periods after cortisone shots. However, the pain relief was temporary. Because the OCD remains in the ankle, the pain inevitably returned. My mistake was being impatient and not limiting my activities (this is why emotional and mental strength to stay disciplined is important).

**Surgeries**
Most OCD patients eventually face the prospect of surgery. As we've already discussed, our cartilage's ability to heal itself is limited.

The first surgery approach is microfracture, in which doctors fracture the bone beneath the cartilage, inciting the bone to release blood and bone marrow. This blood clots and the body,  treating the fractures as an injury, releases cartilage-building cells. Eventually a weaker kind of cartilage, called fibrocartilage, or scar cartilage, forms. This cartilage is not as strong as our normal cartilage (hyaline), and may or may not hold up over time to stress and weight-bearing. The cartilage eventually wears away, and repeated surgery may be necessary, either in the form of another microfracture or other, more invasive surgeries.

What is the success rate of microfracture?
This question is asked often by patients. My doctor originally quoted me a figure of 80% success rate. But this number is mostly meaningless because everyone's definition of "success" varies. What we do know is that scar cartilage is weaker than hyaline cartilage, that it will weaken over time, and that smaller OCDs and younger people have a higher chance of success.

**Recovering From Microfracture Surgery**
Expect to be 6 Weeks Non-weight-bearing, with the foot in a cast and on crutches or a roller or wheelchair. From weeks 6-12 the ankle will still be very weak, as the fibrocartilage is still forming. Doctors usually advise microfracture patients to treat the ankle conservatively for up to a year after surgery in order to give the fibrocartilage a chance to strengthen. Patients also usually undergo physical therapy or physical rehab. 

Recovery tips: On the way back from the hospital, you will be groggy from the anesthesia. Be sure to have someone drive you home. It's imperative to keep your ankle immobile and move it as little as possible during this time. Keep the knee or ankle elevated. 

Having a friend or family member to help during this time can take the strain off of you during this time. Ask them to help with rides, groceries, cooking, and carrying or moving things.

After 8-12 weeks, you will be ready to begin limited weight-bearing. Be very careful not to overdo it during this period. Your ankle or knee is still weak and will probably hurt a bit at first. Listen to the pain and ease off when it's too much. It might be wise to carry around your crutches just in case you have to walk a fair distance.

After 12 weeks, many patients begin physical therapy. Do the exercises diligently, especially at home on off days (learn the exercises and get equipment to do them at home).

For up to a year, it's prudent to avoid aggravating your knee or ankle, as scar cartilage is still weak and may take up to a year or more to fully form. Even after, it will be weak, and may wear away.  Some patients decide to return to athletic activities they engaged in before, such as running, jumping, basketball. This is a risk they decide to take. Every one must take into account his or her ankle or knee health and strength. Personally, I decided to forgo basketball (although I did try playing). My ankle couldn't handle the pounding. My limit is walking around. For some patients, that may be something they have to learn to accept.

[ocdnetadmin]

Surgery: OATS, ACI, and Denovo

If microfracture surgery "fails", it's time for us to consider more invasive procedures. These are a bit riskier in that they inevitably involve implanting cartilage into our OCD areas.

**OATS**
Osteoarticular Transfer System or Osteochondral Autograft Transfer System or mosaicplasty

osteo: bone
articular: joint
osteotomy: the surgical cutting of a bone or removal of bone

OATS is a surgery technique whereby cartilage and bone are transferred into the patient's joint to replace the lost cartilage. This cartilage and underlying bone are together in something called a "plug". Each plug is several mm in diameter, and multiple plugs can be transferred, resulting in a mosaic appearance. This transfer procedure is called a "graft".

The two main types of OATS are "autologous"/"autografts", which means "obtained from the same individual", and  "allograft", which refers to a graft from a cadaver.

**OATS: Autologous Transfer**
In an ankle or knee OATS procedure, cartilage is taken from the patient's knee or other areas where the cartilage is deemed non-essential, eg. non-weight bearing parts of the knee.

An ankle OATS surgery is described as "extensive" or "invasive", because in order to get access to the ankle joint, the surgeon must cut the tibia bone. As you can imagine, this increases the complexity of the surgery, thus increasing the potential complications as well as recovery time; This  *osteotomy*, or cutting of bone, requires  up to 12 weeks of time for the bone to heal, and potentially 3x longer time than microfracture to recover.

Another complication of OATS is the potentially weakened area from which the cartilage is taken. For example if cartilage is transferred from the knee to ankle, the knee will also require recovery time.

**OATS: Allograft Transfer**
One option to avoid this potential risk is to use a graft from a cadaver (ie. corpse, or dead body). This graft is called an "allograft", as opposed to an "autograft", a graft from your own body. But allografts face their own complications: potential disease transmission, infection, and potentially increased risk of graft failure. Failure could involve the bone from the graft fracturing or failing to properly integrate with the patient's own bone and cartilage.

Questions to ask when considering allografts:
-Is the cadaver free of disease?
-Is the lesion(s) very large? Larger grafts have a higher risk of failure.

**OATS Recovery**
Recovery from OATS surgery is generally longer and harder than it is from microfracture surgery, with patients reporting recovery times from 9 months to two years.

**ACI: Autologous Chondrocyte Transplantation**
*chondrocyte*: a cell that has secreted the matrix of cartilage and has become embedded in it

ACI is a relatively new surgery, usually performed in the knee but also can be done in the ankle, which involves 2 stages.
1. Harvest
Cartilage cells are taken from the patient and grown in a lab for 4-6 weeks.

2. Implantation
The grown cells are then transplanted to the patient's damaged areas.
More specifically, a small patch, or membrane, is sewn over the damaged area, the harvested chondrocytes are injected underneath. These cells form a new, hyaline-like cartilage.

Rehabilitation consists of up to 8 weeks non-weight bearing, and up to one year of rigorous physical therapy before a return to normal physical activity.

Some disadvantages of ACI are that it is costly and that it involves two surgeries, whereas a Denovo graft involves only one.

**Denovo NT Allograft**
FDA Approved. Developed by Zimmer Holdings, a company that makes joint replacement products.
NT = Natural Tissue
Approximate Cost: $4500

Tiny chunks of cartilage are taken from a young, healthy organ donor under the age of 13, and implanted into the damaged cartilage area. One advantage is that juvenile cartilage has a 10x greater chondrocyte density than adult cartilage. Also, unlike ACI, there is no need for a flap. Instead, the Denovo procedure uses *fibrin*, a protein formed from blood clots which forms a membrane over wound sites. Zimmer recommends that patients use autologous fibrin. This fibrin acts as a kind of glue, suturing the cartilage to the joint.

Ankle recovery time is similar to that of Microfracture. According to Zimmer, patients should be non-weight-bearing for 6 weeks, proceed to limited weight-bearing and weaning off crutches in weeks 6-12, and rehabilitation for weeks 12-52.

**Arthrex BioCartilage**
At  $750, Arthrex Bio Cartilage is a (much) cheaper alternative to Denovo. The cartilage is dried, micronized (reduced to small particles only a few microns in diameter), and then stored with a shelf-life of 5 years.

A description from Arthrex's website:

*BioCartilage was designed to provide a reproducible, simple and inexpensive method to augment traditional microfracture procedures.  It is developed from allograft cartilage that has been dehydrated and micronized. BioCartilage contains the extracellular matrix that is native to articular cartilage including key components such as type II collagen, proteoglycans, and additional cartilaginous growth factors.  The principle of BioCartilage is to serve as a scaffold over a microfractured defect providing a tissue network that can potentially signal autologous cellular interactions and improve the degree and quality of tissue healing within a properly prepared articular cartilage defect.*

[ocdnetadmin]

Future Developments in techniques for treating OCDs

New surgeries to treat OCDs are being explored. These are usually undergoing clinical trials, mostly first on animals. Some promising ideas involve mesenchymal stem cells (MSC) and platelet-rich plasma (PRP). However, these are new techniques, are usually not covered by insurance, and there is little evidence so far of their efficacy

Stem Cell Injection - Real Innovation or a Scam?
Several centers now practice a technique whereby they extract mesenchymal stem cells from the patient, culture them, and then inject them back into the patient. The same injection method is also used with PRPs. While I have no experience with these stem cell and PRP injection techniques, I am, in general, wary of their self-reported "successes". Many people in hurt are desperate for cures, and are thus willing to set aside their wariness and put their hope (and money) in these new methods. Be sure to do your research.

Robot-assisted surgeries
Some experts predict that robot-assisted and computer-navigated surgery will replace traditional orthopedic surgery for osteochondral lesions. These techniques are less invasive and more accurate, reaching the exact affected spots. Another advantage could be the increased accuracy of placement of graft materials which may result in better outcomes for the patient.

Although these technologies for treating OCD are promising, they remain far off in the future. Stem cell research was stymied for nearly a decade under the Bush administration and even if such technology was developed for repairing osteochondral defects, the clinical trial period would need to go through several years at least before health insurance companies could approve these new surgeries. For now, the traditional approaches of Microfracture and OATs remain the primary treatment options, with Denovo / Bio Cartilage Grafts becoming more popular choices.

[henrychatfield]

Thank you for outlining and explaining all of this!

One note -- I have been looking at getting an ACI, and they have already harvested my chondrocytes. The period it takes to grow them varies, but can be as short as only two weeks (as is my case).

[Phil33]

Hi=-  You may want to add iagh  because it works pretty well and I have tried Regenexx stem cell, PRP, prolo and although they may help the iagh techniques was the fastest method--The only problem is the stigma with hgh injections---but the dirty secret is many professional athletes do it to recover faster--In the case of this treatment it goes right into the damaged joint---Its a real shame it is not better embraced--Any questions let me know--I have done extensive research and personal experience with all these methods--phil

[m.g.]

Has anyone had success with injecting stem cells with PRP into their ankle? No biocartilage, only an injection into the lesion area. So, this is not an invasive surgery. I tried micro drilling and then got pregnant soon afterwards. The pregnancy exacerbated the lesion and made it larger   My husband is friends with a surgeon who says he will do this stem cell procedure for me for free. However, theres a lack of research on doing this. He does not seem to think it will do any harm. I'm just curious if anyone else has tried this yet and if they had good results. 

[Nancy P]

thank you.  I am seeing my surgeon tomorrow, 6.5 months post-op, Microfracture surgery...pain came back after 5 months, could have been increased activity,. stairs to train, a dance I went to and did a little dancing...  pain is like pre-surgery now, sudden, on-set stabbing in right lateral ankle...had cortisone one month ago, no help there.  I was planning to ask Dr. for support group, to speak to other patients, etc.  This is so frustrating, I also moved 2x in 4 months...thank God for my husband...praying....Thank you again.

[RatBait]

Hello All, 

Newbie here.  Thanks Alan for all you have written.  I feel a little hope now.  A little background info on me:
For the past 10 years, I have had pain in both ankles.  Started as a dull achy pain. First podiatrist prescribed me orthotic inserts.  This seemed to help for some time.  As I get older the pain is to the point that working on hard surfaced limit my work time. 

For example, if I was to wash my truck then my wife’s car in the driveway it wipes me out and I walk like a 90 year old man in severe ankle pain.  At night both ankles throb with dull achy pain.  While moving the right ankle I can make it pop and grind. An electric blanket on high feels so good on the ankles!  4 doctors later and numerous x-ray I am told I have arthritis.  I am only 44 and taking Naprosyn and tramadol for pain.

Last doctor had me going to PT.  Thank god the PT peeps told me to see an orthopedic surgeon.  An MRI of the right ankle reveals “ 1 cm OCD on the superior medial posterior talar dome with cartilage defect and reactive subchondral edema.” (whatever the hell that means)

Left ankle MRI scheduled in 5 days.  Surgeon tells me surgery is required for right ankle.  Surgeon also states I have NO arthritis.  SO Now my questions..

Is a 1 cm defect big?  Small?  Average?   Remember I have bilateral pain.  What are the chances of another OCD in left ankle? 

You’re thought please

[1mudrun]

I had surgery June 30, 2016 for a small OCD lesion in right ankle. Normal recovery stuff from doc and went to PT. I am now 7 months post-op and having pain that feels similar to what I felt BEFORE the surgery. I'm pretty frustrated. I was hoping to get back into some cardio. My PT guy gave me steps to get back to running. EVERYONE along the way has said I can. I tried 2 minutes (that was not a typo) this past week. There was no pain, only sort of pressure. In other words, I can feel the muscles/tendons/whatever responding to the extra impact, but it isn't painful at all. After reading a thread on here, now I'm wondering if I shouldn't try this until I hit a year or something. Or maybe I should go back to PT? This is extremely challenging given the long road I've already been done (6-7 weeks NWB, 6 weeks boot, 5 weeks brace, PT...). I've been released from OS for 3 months or so. Wondering if I'll ever feel normal again. I will say that I am able to walk without much difficulty (many days over 10,000 steps so says my Fitbit). I notice that I have more pain when I wear shoes that have lift in the heel or a strap across the ankle. Any feedback would be helpful.

[MoeH]

Ratbait, I wanted to answer your questions about the size of the lesion but then I saw your post was more than a year ago so they probably know the answer by now.

Phil33, iagh is intra-articular injection of growth hormones? Where does the stigma come from? And at what long-term cost do pro athletes get that rapid relief and recovery?  And did you get regenexx stateside or in Grand Cayman? How did that go?

Even though my OCD is presently asymptomatic, I'm considering Regenexx-C as last resort before surgery, but can only find self-reported success stories attributed to unnamed patients.

[thewaybackup]

Hi=-  You may want to add iagh  because it works pretty well and I have tried Regenexx stem cell, PRP, prolo and although they may help the iagh techniques was the fastest method--The only problem is the stigma with hgh injections---but the dirty secret is many professional athletes do it to recover faster--In the case of this treatment it goes right into the damaged joint---Its a real shame it is not better embraced--Any questions let me know--I have done extensive research and personal experience with all these methods--phil

I was just looking into REgenexx...however upon searching the only place I could find that offers IAGH is in Florida. Where did you get yours done? I'm in the Boston area.

[Jess232]

Wasn't sure the best place to put this (please feel free to delete/move somewhere else!) - but just came across some encouraging long-term data on juvenile allograft cartilage for difficult lesions! Wish I had full article access, but even the synopsis was encouraging to read:

https://journals.sagepub.com/doi/10.1177/10711007211014173?url_ver=Z39.88-2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub%20%200pubmed

And an interesting article about micronized dehydrated cartilage as an alternative (which I'm guessing may be biocartilage):

https://www.healio.com/news/orthopedics/20210614/acute-cartilage-autograft-provides-low-cost-risk-for-osteochondral-lesions-of-the-talus