Dr. Charles Glueck – Avascular Necrosis / Osteonecrosis (AVN / ON) Researching Cincinnati Doctor

Dr. Charles Glueck – Avascular Necrosis / Osteonecrosis (AVN / ON) Researching Cincinnati Doctor

posted in: It's Just A Bad Day | 57

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The internet is a wonderful resource and holds so much information.  It afforded me the opportunity to join many wonderful online communities that helped support my diagnosis’s. It seemed that every orthopedic doctor I went to had the same thing to say.. You’re AVN is idiopathic and we’ll really never know why it occurred.

I’m sorry, but a bone just doesn’t DIE in TWO places randomly. Something caused it. I was determined to get to the bottom of it.

After seeing many posts about a doctor in Cincinnati who does heavy research on avascular necrosis I emailed him asking if he’d be able to help me. He said he’d love to help, sent me over a 3 page script to go get blood work and said to make an appointment. 24 vials of blood later, my Dad and I were on our way to Cincinnati. A 4.5 hour trip ended up about 6 hours because of an accident ahead of us… But that’s a whole different story. Haha!

My journey with avascular necrosis started in December 2012. To date I have been told so many different opinions on how to attack the AVN. Some ‘specialists’ said I should just drop my crutches, push through the pain and live until my knee completely collapses and then get a knee placement. Others said I should get a partial knee placement. Others a bone graft.

Everyone had opinions on what to do, but, like I said before, everyone always said ohhh it must be idiopathic avascular necrosis and it just occurs out of the blue (since I didn’t meet the other criteria: deep sea diver, sickle cell anemia, alcoholism, etc.). I just didn’t believe that it could be idiopathic. It occurred for a reason… What that reason was I had no clue. But I needed to find that reason because I was finding that a lot of people on the AVN message boards had it in several places in their body.

After researching root causes, I found Dr. Glueck who researches causes of avascular necrosis. Through his research he has found several genetic factors that cause this to occur in individuals. Walking into his office I had a good feeling that I was going to get some answers and I would finally get on the right path to fix my knee. After all my research I really believed in him before I even met him. We had exchanged emails back and forth and he seemed genuinely interested in helping me. I really felt he was going to have an answer to some of my problems.

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After an in depth evaluation of my health history Dr. Glueck got into his findings. I had shown positive heterozygous for the prothrombin/factor 2 gene. My Dad and I had a blank stare haha we had no idea what that meant. Dr. Glueck was prepared and already had a packet of information for me that had diagrams to explain exactly what was going on. (How many doctors do that?!).

I had been given this genetic factor from either my mom or dad and my blood was more likely to clot for no reason. Many had described the AVN to us as the blood supply getting cut off and the bone died as a result BUT Dr Glueck described it a bit different. My blood had clotted and cut off the blood supply to the two parts of my femur. The clot, acting almost like a beaver dam in a river, was not allowing the blood stuck in the bone to flow back out of the artery. The pressure built up and the oxygen was cut off. Then the bone slowly began to die. Bone tissue takes much longer to die than organ tissue so some parts may be completely dead, but other parts may not be dead yet and could potentially be revived. What caused this to happen? More than likely it was caused by trauma aka probably as a result of the psoriatic arthritis combined with my knee surgeries.

f933123ef82db3d87a375a066c63a7afThe remediation? Drug therapy with the injectable Lovenox. I would inject 100mg a day, split up as 40mg in the morning and 60mg in the evening, for 3 months. Every week I will email the Doc letting him know how it’s going and every 3 weeks I would get blood tests to ensure that all was well. After the 3 months I will then get an x-ray and an MRI to see if the meds have allowed the blood to resume flowing to the bone and to see if there has been potential improvement. If there has been improvement or there is indication that something positive is happening I would then switch to an oral anti-coagulant for another 3 months and then repeat the tests. The whole process may take about 6-9 months to assess if it is working. After this time, if it’s not working, then it’ll be time to explore surgical options. Doc suggested I use my crutches to take more weight off of my leg to try to ensure my bone doesn’t collapse. This is the part that bummed me out the most because I’ve been strengthening it so much I’ve been using it a lot more and have been walking in small areas. Now I had to go back to not doing that…. And will probably be on my crutches for at least another 6 months. Oh yay! Oh well. If it’s best for me then that’s what I have to do! Like it or not! I’m not too excited about having to inject myself twice a day, but again! If it’s the best for me then I’ll suck it up!

In the office they took two more vials of blood to do an eNOS gene test to see if I have problems with nitric oxide in my blood. Of course I tested positive on this test too (why didn’t I ever get these kinds of positive grades on tests in school haha!). Because my blood doesn’t make enough nitric oxize I need to add 9 grams of the amino acid L-Arginine a day to help the process along. (this is a whole another post on it’s own ayyyeeeeee. L-Arginine. Yuck.) Here is a more in depth explanation of Endothelial Nitric Oxide Synthase from Dr. Glueck.

tumblr_inline_mzny2iQvVm1s9979aMutations of the prothrombin gene are the second most common factor which relates to avascular necrosis, first being a mutation in the factor 5 gene. Before leaving he gave me a NO NEVER list. Never should I take any estrogen, testosterone, evista or tamoxifen. I should hardly ever take prednisone or other steroids, like cortisone, as it can set off the clotting. Because this is a genetic disorder, I had to have been given the gene by either my Mom or Dad. It’s likely that they may have passed it on to my sister and brother too. Because they may also have the same problem and will be more susceptible to clots, which could result in a stroke, aneurysm or AVN, all 4 of them must be tested for the mutation now. The great thing about identifying this now is that it could potentially save an unnecessary stroke or something worse!

The frustrating part of the story is that no one I’ve gone to up to this point has ever mentioned any hint of a blood or genetic disorder that could have caused the AVN. We’ve asked numerous doctors countless times why this could have occurred and so many of them just say the cause is unknown. But that just never made sense to me! Everything has a cause right!?!? Dr. Glueck has been publishing literature on his research findings for numerous years now and it seems that doctors are so focused on their standard patients that they’re not going out of their way to help other patients. Thankfully Dr. Glueck is trying so hard to get his research out there and is going to be speaking at the orthopedic convention this year. You can check out his research on this website.

I’m excited and hopeful to see where this leads. If you have avascular necrosis and doctors are unsure of why, you should get in contact with Dr. Glueck. He will work with you even out of town. Share your own AVN story on this thread.

Please feel free to ask me any questions about it! And I’d love to get any feedback from others who may have the same problems!

 

*UPDATE*

Check out my updates to this post.

Medication: Lovenox Blood Thinner for Treatment of AVN

Lovenox Update: First 3 Months

Lovenox Update: Second 3 Months

From there I decided to look for other options and ultimately ended up getting a Regenexx Stem Cell procedure done in March 2015.

 

Wishing You A Pain Free Day!

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  • Debi

    Hey Julie~ Just found your blog and I wanted to say I just had my first appointment with Dr. Glueck on Monday and am waiting results for bloodwork today. I need these results; but I fear them as well. Anyway I wanted to say while waiting from him to get back to me on results, I found your blog with this and it has calmed much fear in me. You just never know how doctors react when you bring them results on Gene mutations. I’ve hit several brick walls already. So I want to Thank you for this calm moment I have.

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  • Derek

    Hey – I came across your blog after doing some searching for Avascular Necrosis as I was recently diagnosed in my right hip. I’ve just started digging into your blog and the many posts. Thanks for sharing your experiences. I’m currently looking at reaching out to Dr. Glueck to see if I possibly have any of the blood disorders and pursuing treatment with Lovenox.

    I saw you had Regenexx after working with Dr. Glueck, I’m just curious if the treatments stopped working at some point? It seems like initially they seemed to be working. Also, it seems that Regenexx worked out great, do you know if they perform that same procedure on the femural head affected by AVH in the hip?

    Thank you!

    • Yes, you should most definitely reach out to glueck. I think he should be every AVN patient’s first step. Reason being, most doctors won’t help you figure out WHY you have AVN. And if you don’t figure out the underlying cause, then you can’t stop the root problem and could end up with AVN in other bones. I had success with the lovenox. I originally had 2 sections of my bone that were necrosed. After my first 3 months on lovenox, the smaller of the 2 didn’t show up on my MRI. I’ve not had a problem with that part since. *knock on wood*

      The larger area of my bone had started to collapse. After the 6 months, Glueck wanted me to just stay on an oral anti-coagulant. To be honest, I didn’t want to stay on crutches and the though of waiting longer by taking the oral blood thinner make me anxious. So I started looking at other options and eventually found Regenexx. They absolutely perform the Regenexx procedure in the hip for AVN. Whenever I talked to the Doc, he was the first one who told me he’s dealt with people like me before. Majority in the hip, less in the knee. It’s been life changing to be honest. I stopped being in constant pain, I’m able to walk and function as a normal human being and honestly, I have my life back. Best money ever spent. EVER. And in the grand scheme of things, it’s not expensive. It’s $40k + time and recovery for a joint replacement. Stem cells are a fraction of the cost and NOTHING like the recovery of a replacement.

      • Derek

        Thank you for the response and feedback, it’s been a whirlwind since finding this out a little over a week ago and I am just starting to process everything. I suppose I am lucky in a sense that I’m pretty early in terms of progression (stage II in right hip and probably stage 1 in left) but unlucky in the sense that my doctor really didn’t have a treatment plan outside of avoiding high impact activites and checking back. However, I’m not content in just sitting around waiting for it to progress. He did mention seeing a hematologist as an option if I wanted to go down that path.
        I emailed Dr. Glueck yesterday and am awaiting his response. Would it be better to call his office? I would definitely like to get some answers and possibly a diagnosis as to what caused it.
        If that would fail I would certainly be looking at Regenexx or the Mayo hospital which does a type of core decompression where they inject stem cells harvested from the iliac crest. I’m pretty close to the Mayo clinic in Rochester, MN so that would be convenient.

        • Yes you are lucky! If you find out that you do have a blood mutation and since you’re in the early stages, you may be able to revive those parts of the bone with a blood thinner! I’ve seen it happen in many patients who catch it early. I know if I would have found Dr. Glueck earlier I think I could have definitely helped my case a lot.

          It can be frustrating when your doctors can’t offer you a lot of advice on what to do. But, know this. YOU ARE NOT ALONE! Honestly, I spent 2.5 years going to doctor after doctor after doctor hearing the same thing. Most just told me to stay on crutches until it completely collapsed and then get a knee replacement. I hear ya. I’m not one to sit around and wait either. That’s the reason I’ve been broadcasting my journey on my blog because I want others to know what options are out there and to help connect people with each other. Doctors know what AVN is, but rarely do they know how to treat it. And you can’t blame them because there are so many different “solutions” out there offered – core decompressions, bone grafts, replacements, etc – and the reason there are so many solutions out there is because nothing is a sure fire solution. BUT, what I see happening in the stem cell realm is phenomenal. As long as you’re addressing your underlying solution, you have a chance to really help regenerate those bone cells.

          Most doctors just tell you that the bone has died. But what’s interesting as Dr. Glueck explained it to me that the cells are dying off. So some of them may be completely dead, while others may just be dying and by flushing in blood with blood thinners, you may be able to revive those ones that aren’t completely dead yet.

          I’m sure calling his office wouldn’t hurt! He usually is pretty good at responding to emails too.

          • Derek

            Yes, I’m certainly not going to sit around and wait until it’s enevitable that I need total hip replacement. Also, I’m only 32 so that would mean I would likely be looking at 2 revision surgeries by age 75!

            I don’t know if it happens at all or very often, but my doctors words were basically to the effect of avoid high impact activities stretch to maintain your hip flexibility/mobility and hope it revascularizes. I haven’t yet come across any readings of a case where the bone just revascularized, but perhaps it happens. However, I’m not going to gamble and hope that happens.
            While I wait I have pretty much eliminated a lot of the bad stuff from my diet (caffein, alcohol, etc.) and started taking some additional supplements like an oil supplement with Omega 3, 6 & 9, Magnesium and Vitamin D. Don’t know how much they’ll do, but it can’t hurt at this point.

          • I hear ya, I’m 30 so I TOTALLLLLYYY get it. I remember doing the math and was like, ummm helloooo?? I’ll be like 60 and be out of options! Now of course, technology is always changing and there are some awesome advances coming down the pipeline, but still. Not what you want to be thinking when you’re still so young.

            Yeah, that’s why they told me to stay on crutches for so long to help preserve the bone so it wouldn’t collapse. No, I haven’t come across it doing that by itself – but mine did with the help of blood thinners!

            No you’re absolutely right by eliminating those things and taking the supplements. Best things you can do for yourself! Bone doesn’t just DIE, so there has to be a reason. When we can support our body and it’s systems to work optimally we’re really helping arm ourselves the best we can.

          • Derek

            Got a response from Dr. Glueck and he sent a lot of information on the research as well as the blood work orders to be performed. Only thing I am running into now is I don’t have a Quest Diagnostics or Lab Corp location near me to do the work. I’ve responded to see if this would be something my local hospital system can do and send on and am awaiting his response on that. Otherwise not sure how soon I can get the blood work done.

          • Ah! Always something. I’m sure you’re not the first patient that has run into this. There has to be SOMEWHERE you can get it done!!!

          • Derek

            Yes, going to look into whether my local hospital system can perform all the needed tests or else I’ll be needing to schedule a road trip day to Omaha to get them done!

          • Derek

            Frustrating couple of days! Feel like I am stuck in neutral trying to get this blood work done.

            Was working with my local physicians office and they thought they might be able to do the work, but informed me this morning that isn’t the case and that I would have to go through Quest/ or Lab Corp.

            Turns out because Dr. Glueck is in another state and both the Quest Diagnostics and Lab Corp locations closest to me are in another state (which are both different than my home state) going to get the work done there is considered out of network for my insurance.

            So now I am going back to my family physician office to see if the pathology/laboratory within their hospital system can do the tests and I can share the results with Dr. Glueck.

            I was not picturing this being so difficult.

          • Oh that’s a good idea to see if they can do it and share the results! Good thinking! I talked briefly to the Regenexx doctor I mentioned before and he said that the main difference between that Mayo clinic procedure was that they did a core decompression. And of course he wasn’t sure what they mixed in with their prp/stem cells so the solution may be different. All such interesting stuff! I find it fascinating that the health world is changing so much. There are going to be some many amazing procedures in the future when it comes to stem cells – so long as the FDA doesn’t railroad their progress and put strict restrictions on it. But they’re having an FDA hearing in April and received over 600 speaker requests to come and give their story! I requested to speak and we each have 3 minutes to give our pitch! I think it’s great to see such an overwhelming response to stem cells and how well they’ve worked! Fingers crossed for you and your blood work. Sending lots of positive vibes something works out!!!!

          • Derek

            Thanks for the positive vibes! That’s awesome that you’ll be giving your story and experience at the hearing! Hopefully it will lead to more acceptance and open doors for more research and advancement in that area of medicine.

            So my doctor’s office just messaged me back saying they “recommended we follow the usual protocol which is to have the orders put under the ordering doctor” (Dr. Glueck). So back to the drawing board and contacting my insurance to see if there’s any alternatives and if not how much more it will cost to have it done as an out of network billing.

            I’ve been looking at Regenexx and all the information and videos they have there. It looks like they have an office in Minnesota that isn’t terribly far away from my home. So depending on what happens with Dr. Glueck’s evaluation of my case (if I can ever get the blood labs done and sent to him!) that may be an option as well.

          • It’s great to know your options. I spent years not even having any options! haha so gather as much data and info as you can and then make the best informed decision. It’s crazy to me that it’s such a big deal/hassle to get blood work drawn? I wonder if you could get it drawn at your doctor’s or a place around your house and ship it to the quest/labcorp labs? I don’t know if that’s even an option?

          • Derek

            Yes, it’s crazy to me too! I never pictured it being this difficult and thought by now I would have the results to him!
            I’m checking into that, I’m not sure if it’s an issue where the type of labs/tests being done can only be ordered by a licensed physician or what the case is. I was a bit surprised that my physician wouldn’t just use the form Dr. Glueck sent for Quest/Lab Corp and order all the same herself.

          • Derek

            And still another frustrating last couple of days, still cannot get my either my family physician or orthopedic surgeon (who diagnosed my AVN) to refer me to a hematologist to get blood work done. I called the hematology department directly and they said I need a referral from my family physician!

            I have checked with the lab in my hospital system here (same health system my family doctor is part of) and it seems they can do all the tests on the forms Dr. Glueck sent.

            So while I still trying to sort out just getting blood work done and to Dr. Glueck, I have a phone consultation scheduled with Mayo Clinic’s Regenerative Medicine department to get information on their minimally invasive procedure.

            I have also been in contact with Regenexx and got basic information on their hip AVN procedure and associated costs and information. I am considering paying the $200 and doing a phone consultation as Colorado is a bit far to go just for the consult to see if I am a good candidate.

          • My first thought for you is to push for the blood work. If your AVN is in the beginning stages and you haven’t had any collapse at all, you honestly may be able to revive it without having to go through a procedure and spend that kind of money. It’s definitely good to keep your options open though. Are there any regenexx facilities around you? They have offices all over the country. There’s one by my house, but they weren’t doing the bone procedure at the time I needed it done. They just started doing it a few months ago – that’s why I had to travel to get mine done.

          • Derek

            I am pushing hard, and absolutely want to get the blood tests completed and evaluated by Dr. Glueck. If there’s any chance that I can stop progression and possibly reverse the damage done I’m all for it.

            Through many phone calls and help from one of the advocates for our insurance plan, I got my family doctor to at least give me a referral to their hematology department this morning after a conference call with the three of us. Right now I’m waiting for a call to schedule an appointment and am hopefully getting closer to having the tests completed. I’m hopeful everything from here will be a bit smoother and less frustrating.

            I never really got an explanation as to why my physician or the orthopedic surgeon were so hesitant and declined to work with me on getting the blood draws completed and sent to Dr. Glueck. But, whatever the reason it will probably prompt me to work with another doctor (likely in a different company) going forward.

          • Wow, yeah that’s really odd that they wouldn’t refer you. I mean, what do they have to lose by you going to a blood specialist? Makes no sense? But then again… most times insurance and health plans don’t make sense! HA!

          • Derek

            Oh no, it’s not my insurance provider that has been the problem, it is my family doctor and orthopedic surgeon who are in the same health system. Which still just baffles me why they wouldn’t want to assist in something I want for my health care. Something that could potentially save me from two hip replacements. It is just absolutely nuts, and I’m still pretty steam about how the whole situation has played out the last week or so.

            My insurance provider has been working hard on my behalf to figure out how to get these completed and considered in network so I don’t have to pay a small fortune. They’ve done conference calls with the health system and doctors and been doing everything they can to advise me and make sure I get what I need.

          • Wow. I’m so sorry you’re having to deal with this. Such a frustration that you DON’T need at this moment!

          • Derek

            It has been very frustrating, so thanks for listening to my venting and responding. This site has been invaluable in my quest to avoid total hip replacement, reading about your experiences as well as others who have shared has been encouraging and uplifting. I’m hanging on to hope that my right hip is still in an early enough stage that any of these alternate treatments remain viable.

            We’re back on track and hopefully heading in the right direction to getting the tests completed now. Fingers crossed for no more road blocks.

          • 100000% understand your frustration! No thanks needed – happy to do it 🙂 I’m crossing all my fingers and toes for you!!!!!!

          • Derek

            The closest Regenexx facility is in Minnesota probably about 3-4 hours away, but they do not perform the Avascular Necrosis procedures is what I was told on my initial with one of their reps yesterday. The Colorado office is actually the closest where they perform the procedure. Sounds like I’d be looking at roughly $6-8k for both hips and they do not perform both procedures at the same time in most cases.

            They gave me information on the same day procedure, and said they obviously wouldn’t be able to tell me if I would need multiple injections until after reviewing my MRI, background, etc.

            Did they not have the same day procedure for your knee treatment or was it case where they felt it needed to be done over a couple of days? If I’m recalling all the blog posts you were there for nearly a week, correct?

          • Correct, the procedure happened over the course of a week. Yup, that’s what mine cost – which I know isn’t chump change that most people have sitting around, but when it came to a stem cell procedure I thought it would be a whole heck of a lot more than that. I mean, all in with travel and everything I probably ended up close to $10-12k. Replacements cost ~$40k and you have to factor in your time for recovery and rehab and everything too. Time is money! And with this procedure your recovery and PT time is SIGNIFICANTLY less. I mean, not even comparable.

          • Derek

            I completely agree with you. Here’s the funny thing – with my insurance and my max annual out of pocket a total hip replacement for me would be less than $6k and depending on timing and when I do PT and rehab, etc., if it’s in the same here it would be covered.

            I have checked with my insurance and know for a fact they won’t cover the Regenexx procedure because it’s considered experimental. So that leads me to wonder how the procedure at Mayo would get treated under my plan. Would the core decompression part be covered and the stem cell component not be? Hopefully that will be more clear after tomorrow as well.

          • I believe the core decompression would be, but not the stem cells. Like with Regenexx, things like MRIs, blood test, etc those can be run through your insurance, but the stem cell procedure cannot.

          • Derek

            You’re correct, for the Mayo procedure they cover the core decompression but not the stem cell portion of the procedure. I replied to the other blog post where the YouTube video of the procedure is with details on the procedure I received from Mayo. It’s pretty expensive, with about $28k per hip for just the decompression and then another $5k per hip for the stem cell injection.

            So it’s pretty much on the level of a hip replacement as far as what gets billed, but my cost is actually quite a bit more since I’d pay my annual out of pocket max on the decompression and then all of the stem cell portion.

          • Derek

            So the insurance company is willing to pay out $20-30k or more to pay their share of the total hip replacement but they won’t even take a look at a $6-8k chance that may prevent the need for the hip replacement surgery altogether.

          • Yeah because it’s not FDA approved.

          • Derek

            Exactly, per my insurance they consider procedures with stem cells to be “investigational”. It just seems pretty silly, considering the amount of money they would save even if only 1/3 of the procedures were successful in preventing hip replacement.

            Would sure be nice to seem some quick progress on the FDA’s part and some adoption by insurance providers.

          • Don’t even get me started… I’ve had this argument with so many people. It’s ridiculous. It would be super nice, but unfortunately very doubtful. The FDA is holding a hearing in April that has the potential to be very impactful – could go either good or bad. I signed up to present my story. There were over 600 people who contacted them to speak. So hopefully the FDA will hear some good testimonials to start to push it forward. The biggest issue is if they decide to let big pharma take control of stem cells since they have the money to do research. That would literally be the absolute worst thing that could happen, because then they’d start selling and packaging stem cells as medication and we wouldn’t be allowed to use our own stem cells. So this hearing could change a lot. . . hopefully for the better. But honestly, insurance covering stem cells – I know some doctors who use them now say they bet they won’t see that happen in their career life.

          • Derek

            Julie – a few more questions on the Regenexx procedure – and if you would rather answer these privately I can provide my email address.

            Was your procedure spread over a week for a certain reason? Was it just due to your case? When looking through all their material and website it looks like the same day procedure is most common and what I see referred to a lot.

            In the brochure under the “What should I expect?” section it states “Re-injections can be as soon as 6 weeks. We recommend that most
            patients will need 2-4 injection cycles” Did you have multiple injections over the week?
            I realize all this is planned and recommended on a case by case basis, but I’m just trying to understand a bit more. Thanks.

          • Good questions. No, that’s how it usually is. When they say same day they mean that your stem cells are extracted and reinjected that same day. The number of injections you need is based on each individual case and what the doctors think. You don’t get multiple stem cell injections over the week- just once. If you read through my posts I have what happens day by day. Each day is something different. You only receive stem cells one day. Then, depending on your case you may need to come back or not. Next month I’m getting another MRI and will evaluate if I want to go in and get the procedure again or not. But I know some who their course of treatment has included several different injections. It just depends on what’s going on and how bad the case is. While I was there, there was a many who had traveled in for the procedure. He had several things wrong with him and it was like his 4th time back.

          • Derek

            Ahh, that all makes sense and is very good to know. Thanks again for answering my many questions.

            I finally have my appointment with a hematologist setup so I’m hoping I’m at least closer to getting the blood work done and sent to Dr. Glueck for review.

          • Derek

            UPDATE – got most of my blood work completed yesterday, so hopefully will have some results shortly. My local hematologist who met with me, heard my story and actually listened and looked into Dr. Glueck’s research was willing to help me out.

            She preferred to hold off on a couple of the tests indicated by Dr. Glueck, as she said that some of tests were basically a more granular version of tests we’d be completing and it wouldn’t make much sense to test if the “top level” test didn’t show any abnormalities. She did however say that if at any point I still wanted them completed she would order them as it’s my money being spent. Hopefully not too long on waiting for results and then sharing with Dr. Glueck.

  • Demi

    I am traveling the same path as you but I’m only 28! It’s pretty crazy! You get so many conflicting messages from the Dr’s at first. I am working on setting up blood work for Dr. Gluek, but am resorting to a hospital to draw the blood as Quest and Lab Corp won’t send the extra vile to him. As I’m in the earlier stages than you in term of getting a treatment plan, were you recommended any dietary changes? The only thing I see out there is no alcohol. From what I’ve been learning is that might just be a blanket statement as many Dr.’s don’t really know what causes it so they just use that. Love the title of this page too!

    • No one ever recommended dietary changes to me. To be honest, I became very serious about them once I was dx with a blood condition through Dr. Glueck. I also have autoimmune issues so when I started researching it and figured out that food can cause so much inflammation and havoc in our bodies I changed my diet and haven’t looked back ever since. Dr’s don’t really get much schooling on nutrition (they seriously only have one med school class on it), so they’re not always the ones to recommend it. BUT, I’ll tell you this. Every condition in our body is rooted in inflammation because our immune systems get involved in trying to fix the problem. If you can help control your inflammation, you begin to have the upper hand. 75-80% of your immune system lives in your gut, so if you cut out triggers which are stimulating your immune system, your body will clam down and begin to focus on efforts it needs to heal. Now, with AVN, your body is never going to just heal itself or regenerate the bone. (At least it won’t to my knowledge. Who knows, maybe in 20 years we’ll find out something completely different!!!) but if you can cut down the triggers in your body and make it an environment conducive to healing, then you’re in a better position to help yourself. I’ve seen people revive their AVN and have huge successes from Dr. Glueck’s testing and blood thinner protocols. I was one of them! Part of my bone revived, but the other did not because it had started to collapse. That’s why I continued to look for answers and ended up getting a stem cell procedure to help regrow my bone. Which, has been a HUGE miracle and blessing in my life. I always suggest to people that the first course of action is to figure out WHY they have AVN. And DON’T TAKE IDIOPATHIC FOR AN ANSWER!!! Bone just “just die” there HAS to be a reason. When a doctor throws out the word idiopathic I honestly want to punch them in the face (probably harsh, but true) because they’re basically saying they have no idea. And unfortunately in today’s healthcare landscape we have to be our own best advocates and truly look for the answers our selves. That’s why I think Dr. Glueck is a great resource to start at because his extensive testing will at least let you know if it’s a blood problem – which I’ve found to be the case almost every single time (speaking off of all the AVN patients I’ve come in contact with). It’s so confusing, it’s so frustrating, it can be such a lonely journey. But just remember, there are SO Many other patients out there battling the same thing as you. Hopefully having that bit of hope can help a little bit on the really rough days <3 Let me know how it all plays out for you! Comment on my blog or email me justabaddaynotlife@gmail.com!

    • Derek

      Hi Demi, I’m also just starting my journey with AVN at age 32. I’ve got bilateral AVN, stage 1 left hip and stage 2 right hip. I’m at the same place you are at, with having to have my local hospital complete the blood work to send to Dr. Glueck since I don’t have a Lab Corp or Quest in my state (South Dakota). I had planned to drive to the closest location (3 hours away) but my insurance provider told me it would all be billed as out of network (very expensive!). Long story short, Dr. Glueck is out of network for my plan, and because the state he’s in is different from the state where the labs would’ve been done they wouldn’t cover it in network. Back to the drawing board, as I’ve been working for about 3-4 weeks just trying to get the blood work done.

      I’ve been posting and venting a lot below, because it’s been a struggle to get my hospital network to even order the blood work for me. I don’t know if they didn’t want to work with a doctor out of their system or if they just didn’t understand his work and what it is I wanted, but either way it has me to the point of where I’ll probably switch doctors, but that’s another story.

      Over about the last month, since finding out my diagnosis, I have been really trying to eliminate caffeine and alcohol from my diet. I haven’t 100% but I have really backed off on both. I also started taking some additional supplements – vitamin D3, Magnesium, and an oil pill (omegas 3,6,&9). I honestly don’t know if it’s helping at all yet, but I’m sure it can’t be hurting.

      I’d be happy to also keep in touch and see how things go with Dr. Glueck for you. Are you seeing him in person or no? I’ve only communicated through email so far and gotten him my basic information he asked for as well as the reports from my Xray and MRI.

      Julie – from reading all of your posts about Dr. Glueck, I see there were follow up blood tests, xrays, MRI, etc. I am curious how that will work when working with him from a distance. Hopefully I won’t continue to struggle to get my local doctor(s) – whether my current or the new ones I find – to order those for me.

      • He would just send me the script via email and I would go get the tests done. Then the labs sent them directly to him and he’d email or call me with the results. For the MRI, I went to my oath and had that done. Then she sent the results to Glueck after we reviewed them and then I talked with Glueck via email I think (or maybe phone) to get another prescription for the lovenox.

        • Derek

          Ok, I’m guessing for me I am going to run into the same problem that I am having now with his lab orders since he is considered out of network by my insurance. Anything ordered by him will be considered out of network for me. Assuming I’ll have to try to get my local doctor(s) to order prescriptions, radiology, etc.

  • Derek

    Right, it’s kind of a weird thought to have that maybe I want to have a clotting disorder so at least then I know and I can have a treatment plan to stop my AVN.

  • lisa

    Hi there I have many areas of avn ….I have already had hips replaced and tibial bone graft I now have knees arms and maybe spine avn do you know by any chance if Dr glueck gets involved in helping people in the UK …..the doctors here are telling me they can’t do anything for me ??? Good luck on your journey x

    • You know what, I’m not 100% sure if he does, but I’d suggest reaching out to him and asking! What’s the worst he could say – no? I know that he’s worked with other doctors around the country to help patients get the blood tests they need. At the very least, you’d probably be able to give you a list that you could take to a doctor there in the UK to have done. Reach out to him!! His contact info is listed here: https://osteonecrosis.me/doctors/

    • I apologize, I swear sometimes I don’t get notified that there are comments. I’m not sure if he does or not. Have you reached out to him?

  • Raechel

    Hello all, I have several areas of AVN most significant being in my left femur head. The pain is outrageous. How do I get in contact with this doctor? I am about to have injections to my sacrial-ileoc joint with a steroid. The femur head has already started to collapse, I think the mri read stage 4.

    • His contact info is listed here: https://osteonecrosis.me/doctors/

      I’d also suggest you look into the regenexx procedure. You can read all about it on my blog, but I had it done and the stem cells helped me regrow my bone. I had a partial collapse, so I totally understand what you’re going through!!! Here’s their main site: http://regenexx.com/ You can do a search by area code to locate a doctor nearest you!

    • Derek

      Cholesterol and Metabolism Center

      2135 Dana Avenue Suite 430
      Cincinnati OH 45207-1313

      Phone
      513-924-8250

      Email
      CJGlueck@mercy.com

    • I apologize, I swear sometimes I don’t get notified that there are comments!!!

      If it has started to collapse, you more than likely should also seek other options as well. I think it’s important to reach out to him to see if you can find the underlying cause. That’s something that a lot of doctors do not do and I believe is in imperative step. but I think that if you are in a later stage, you should look into the Regenexx procedures. I had one done on my knee and it has read generated 60% of my bone. Here I have outlined my journey thus far: http://www.itsjustabadday.com/regenexx-avn-procedure/

  • Derek

    So I ended up with a few positive tests from Dr. Glueck’s testing:

    Very elevated lipoprotein(a)
    Homozygous MTHFR C677T mutation
    Heterozygous eNOS T786C mutation
    Heterozygous Plasminogen Activator Inhibitor-1 (PAI-1)

    I’m on a number of supplements to address, and will hopefully be restarting anticoagulant treatment if I can get on an alternative to lovenox/enoxaparin which was giving me terrible side effects.

    • oh geez! It was giving you side effects. Reminds me asking what happened? What supplements does he have you on? Are you on L-arginine. I bought a bunch of the packet, but quickly realized that they have artificial ingredients in it and I stay away from all of those so I tried doing the powder, but honestly it taste disgusting. Ha ha!

      • Derek

        The enoxaparin was giving me nausea, completely lost my appetite, and diarrhea. I went almost 3 weeks, but couldn’t do it anymore. I did get switched to Eliquis 2.5mg twice daily, so I’m going to finish off the 70/90 days on Eliquis and see if that helps my stop/reverse my left femur.

        I’m taking B6 (100mg), B12 (2000mcg) and l-methylfolate (5mg) daily for the MTHFR
        I was taking the l-arginine, but I’m taking so much other stuff right now and it didn’t seem to play nice with it either so I am taking a break from it. I bought a plain powder from Amazon, I can drink it with water and it’s only unpleasant not terrible. I have mixed with orange juice and it’s barely noticeable. The brand is Best Naturals, 100% pure free form and quite a bit more affordable than the arginaid.

        • Yikes! Yeah, I’d stop it too if I were you. Let me know how the Eliquis does!

          Yeah! arginaid! That was it. Man, they had so many other ingredients in there I wonder how it’s actually beneficial to our body! haha

          • Derek

            Yeah, it wasn’t much fun and I lost a lot of weight. So far I don’t have any noticeable effects from the Eliquis which is great.

            I didn’t even bother ordering or trying the arginaid after seeing how much it would cost per serving. There’s seems to be some research that the l-arginine has some positive effects and that it does increase nitric oxide and relaxes the vessels.

            http://www.mayoclinic.org/drugs-supplements/arginine/evidence/HRB-20058733

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  • Rebecca

    Hi there! I know I’m a few years late on this thread but I’m really hoping that you see my message and can help me out.
    One of my dear friends just got diagnosed with this and she is in a lot of pain. I wanted to put together a care package of things that would make her feel better or brighten her day. Do you have any suggestions of things that you would’ve enjoyed receiving when you were first diagnosed? I’ll take suggestions from anyone on this thread by the way 🙂

    Thank you so much –
    Rebecca