Standing without a cane
One Day I was 34, fit and able to run 20 miles a week. Suddenly at the end of September 2011 I started having knee pain. A month later I was unable to walk and was wheelchair bound.
Walking with my cane
I went to two Orthopedic Specialists, had x-rays, two MRI’sand a bone scan. I was told I either had bone cancer or Osteonecrosis/Avascular Necrosis. After having four pieces of bone removed from my right femur it was confirmed that I did in fact have Osteonecrosis/Avascular Necrosis.
I asked my Orthopedic Surgeon why I got this disease and he said it was idiopathic. I was determined to find out why I got Osteonecrosis/Avascular Necrosis and after calling specialists all over the country and digging for research I finally found out why. On this blog I am sharing my journey to find answers and the research I have discovered.
I can stand long enough to sing again
When I was first in a wheelchair
Disclaimer: I am not a medical professional. Dr. Charles Glueck gave me permission to upload his clinical papers. I gathered research on clotting disorders based on my experiences and conversations with various doctors.
Osteonecrosis (Avascular Necrosis) 
Hello! I have osteonecrosis of the jaw. This was discovered 5 yrs ago when I had a bridge replaced on the left side of my jaw, parts of the bone started coming out with the extraction of a tooth, then 5 more came out. I took Fosamas, Forte, Fosamax again, Benevia, then Prolia. Having severe trouble now with the right side! Doctors here in Birmingham, Alabama, have not seen anything like it. One doctor I saw yesterday, who is one of the best in town, almost cried when he saw my xrays! Does your group have any members that have this horrible disease in the jaw? If so, please let me know and I will join. I need medical help now and Dr. Thomas is talking to his peers to see what in the world can be done. Thank you, Mary Ruth Burgess, Home 205-870-7286 (cell 205-902-2509) I live in Homewood, Al
I am having extreme oral problems for some years. I have not been able to find help. First, about 6 years ago, I had to brush my teeth and mouth very often, and that seemed to be sufficient. Today I can no longer get my mouth clean, there is scum, soft and hard over all tissues in my mouth, and on my teeth. I cannot get them clean if I floss all day. The scum, pus, whatever it is is clear, so much so, that when I had my teeth cleaned, the hygienist said my teeth were so clean already that I really did not need to have them cleaned. She could not see nor feel anything in my mouth. Today, when I woke up, my jaw bone or maybe some gland right under the lobes of each ear hurt so much I could hardly stand it. I still have all the scum, grit, and pus (all clear, I can’t even see it looking in the morror) in my mouth, even more than ever. I have no idea what is going on, but I am afraid I will wake up with no teeth, and maybe no jaw. I am getting an x-ray, but all my teeth seem fine and firm, so far. I have pain, but did not even a week ago. I once took Fosamas a long time ago, because I have osteoporosis, but it made my bones hurt so much I had to quit taking it. If you have any idea what to do let me know. I live in the Denver area. e-mail texianster@gmail.com.
Wrote to you saying that Dr. Glueck recommends an oral surgeon in Indiana. Did you misspell your email address? My message to you would not “send” until I addressed it as “texansister”
Hello, what did it say my email address was? I have emailed you personally as well 🙂
Yes, I was writing to you personally. I am losing bone in my jaws, lower, and now upper rapidly. I am going to see Dr. Nored in Houston, Texas, http://www.jimnored.com/ . I have been trying literally for years to get a solution. This will kill me, I am now having heart problems. I do not feel well at all, chills, and just sick. I will let you know how it goes in Texas. Please write a new e-mail, so I can keep this conversation separate and get to know who you are. Marianne
On Sun, Jan 6, 2013 at 11:31 AM, Osteonecrosis (Avascular Necrosis) wrote:
> ** > osteonecrosis77 commented: “Hello, what did it say my email address > was? I have emailed you personally as well :)” >
About the e-mail address. Strange. My e-mail is texianster@gmail.comStrange that it did not work.
On Sun, Jan 6, 2013 at 11:30 AM, Osteonecrosis (Avascular Necrosis) wrote:
> ** > somadoc commented: “Wrote to you saying that Dr. Glueck recommends an > oral surgeon in Indiana. Did you misspell your email address? My message to > you would not “send” until I addressed it as “texansister”” >
It could be tonsil stones which are a pain in the…BUT you can go to a ENT suggest this a nd see what they say. There is even a special tool you can buy online to remove them yourself or get your tonsils removed. Good luck and God bless.Let me know if this helps.
Hello,
I was doing research on osteonecrosis of the jaw and Leiden Factor V. Have you come across literature about drug treatment for Osteoporosis when you have Leiden Factor V? All of the medications either have a risk of thrombosis or osteonecrosis of the jaw and the endocrinologist can’t find a medication to treat me with. I have had 3 dental implants so far with out any issues, but I need more and my T scores are dropping. I am just entering menopause so I presume it will get worse quickly without meds.
It is very challenging to identify the best course of action.
Have you ever heard of Hyperbaric oxygen treatment to prevent osteonecrosis prior to surgery?
My mom also has Leiden Factor V and has had two major DVTs and is on coumadin.
Thanks for your blog!
Are you writing to me personally. I, like you, am fighting severe oral problems. I have not found a solution, but am perusing a solution, which I have not found yet. If you are writing to me personally, I would like to correspond.
Thanks so much.
Marianne Rodgers
(Are you Deb who started the FVL list forum?)
I share aspects of your conundrum. Dr. Glueck’s research intrigues me. He has written me that FVL by itself is a causative factor of ONJ. Preventing ONJ, ON, and pain, as well as osteoporosis, seems to be especially a WOMENS HEALTH ISSUE currently ignored by most medical research, including for the many women who do not even know they have FVL. Dr. Glueck’s is the only research I’ve found that comes close.
Regarding implants, research materials carefully–I came across a Danish (I believe) company that found incompatible metals to be associated with MS, and they have a test to find which is best for you. Zirconium is generally better than titanium, for example. What are T scores? Not all post-menopausal women get osteoporosis, do they? Does coumadin help your mom regarding osteoporosis?
Where do you find an association of Hyperbaric oxygen treatment for preventing osteonecrosis, and why would it be used prior to rather than after surgery? What types of surgery? Good luck. Please let me and others know what you learn.
This paper was released in 2009. I know that hyperbaric medicine has been used successfully for ON of the Jaw. When I was living with my parents in PA I went to their dentist who trained at Temple University in Philadelphia and he said that they often recommended hyperbaric treatment for ON of the Jaw with successfull results. If you have ON of the Jaw I think it’s something you should DEFINITLEY look into.
Utility of hyperbaric oxygen in treatment of bisphosphonate-related osteonecrosis of the jaws.
Freiberger JJ.
Source
Center for Hyperbaric Medicine and Environmental Physiology, Duke University Medical Center, Durham, NC 27710, USA. freib002@mc.duke.edu
Abstract
Bisphosphonates suppress bone turnover by disrupting osteoclast signal transduction, maturation, and longevity. In some patients, it has been hypothesized that suppressed turnover can impair oral wound healing, leading to a distressing, osteopetrosis-like jaw necrosis called bisphosphonate-related osteonecrosis of the jaws (BRONJ). Hyperbaric oxygen (HBO), as an adjunct to surgery and antibiotics, might have utility in the treatment of BRONJ because it produces reactive oxygen and nitrogen species that positively modulate the redox-sensitive intracellular signaling molecules involved in bone turnover. The efficacy of HBO in the treatment of BRONJ is currently under investigation in randomized controlled trials at Duke University and the University of Minnesota, and the early results have been encouraging. This report discusses osteoclast biology, how HBO has the potential to augment bone turnover by way of the signaling effects on osteoclasts, the available clinical data on HBO in the treatment of BRONJ, the ongoing randomized controlled trials of HBO, and the study-associated efforts to find biomarkers to characterize an individual’s risk of developing this disease.
Guess what, Cassie, I was just diagnosed to have early stages of osteonecrosis ( left knee bone) after my 2nd MRI. That’s why I fractured my knee, the doctor said. He offered me 2 treatment choices I’d like to consult you first,( but not here.) Help!!!?
There are so many potential causes of ON and I have a lot of them, that the docs have literally, thrown up their hands in the air as to the cause, but it it higly suspected the the lupus and blood disorderrse could be the cause. Then again, it could be the steroids that caused it or it could be the APS that caused it. Bottom line, it is there. Not only in the joints, but in several long-bones. That’s why I’m so glad that there is the INBONE II replacement, because it can bypass disease/dea bone and be grounded. Docs? I wouldn’t limit to this lis, but this is your life and you deserve the best. https://ryortho.com/2013/10/the-top-26-foot-ankle-surgeons-in-north-america/
Hello, regarding osteo necrosis of jaw, hyperbaric oxygen treatment works, hard chamber, multi or mono. It has been prescribed by oral surgeons and other physicians. Here in Knoxville Tn, I spoke with patient and surgeons regarding his very issue, as I await my son’s hyperbaric approval from insurance ( for his hip). In this area, The oral surgeons having success with this belong with Southeast Oral Surgeons, Jason Kennedy is one I spoke with…865-577-7800 is one of their three offices. If anyone would like to speak with the patient involved, she probably would be happy to speak with you. I do not feel comfortable giving out your personal information, but the office can arrange perhaps, or you could email me and I will call her with your conta info if you like.
Did you have any luck with the hyperbaric oxygen therapy for your son’s hip? Or do you know of anyone who did have a good outcome? I have AVN in both hips and also possible in other places. Please let me know I would appreciate hearing about any knowledge or experience you might have. Thank You
I would contact the hyperbaric chambers in your area and see what oral surgeons/groups are sending patients for ONJ. The hospital associated hyperbarics are usually located in the Wound Care or Wound Treatment centers. If you live near Charlotte North Carolina, I personally recommend The Charlotte Metro Hyperbarics…they are a free standing center in the Huntersville area; See wikapedia for further information on hyperbarics and difference between free standing clinic and hospital associated (may be a contract company). Also today, I spoke with a dental professional who did some work at a dental school in Alabama..she said they did ostonomies (sp)..sounds like the bone grafting with tin holes drilled, adding cadaver bone and centrifuged blood plasma (patient’s). Hyperbarics for ONJ is completely accepted by most insurance as I understand it. Hyperbarics is most time consuming…as in several hours a day, most days, so locating a highly professional facility as close to your home as possible would be best. My son goes to a multichamber here run by a company out of Cincinnati that has numerous “portable” multichambers at hospitals in several states.
There is a “soft” chamber used more commonly by athletes, chiropracters etc. This is NOT what you need. It uses compressed air…and while it may have benefits for some things, it is not medical grade, is not what a doctor or insurance company is referring to. The “soft” HBOTs kind of zip up around you like a bag.
I think there is another good free standing clinic in Hilton Head , SC. I spoke with the owner a few months ago and viewed his website info. You will need a prescription or referral to any hyperbaric whether you go through insurance or not.
Hope you get to HBOT. Think about something you have been wanting to read that is not “newsprint”. Or a movie you have been wanting to see. All the ones I know about will play a movie for you.
Whoops, error correction: the MobileHyperbarics company is out of Cleveland, OH — and have several mobile units at hospitals in eastern states.
Hi, I want to e-mail our wonderful moderator. Please e-mail me your contact. Thanks! gloflin1@bellsouth.net
Thank you for posting I have van in 8 joints my hips have been replaced due are doing record compression on my shoulders’ and unsure about my knees and ankles.
Im sorry to hear it has taken over so much of your body. Do you know why you developed AVN?
Lyme Disease (LD) caused my AVN. LD is a living nightmare. Modern medicine totally ignores anyone with my disease.
Marianne,
Was that confirmed for you finally? Do you still have lymes disease and are you being treated for it?
Cassandra
I was diagnosed via PCR with Lyme Disease. I had successful treatment for a number of years, but not now. I cannot get treatment, and am trying to treat myself, though not successfully. I have not received any treatment for the infection in my mouth. I cannot get anyone to help me. I find not being able to get any treatment is true for many Lyme patients. The disease can be fatal quickly, or slowly. It is a horrible disease. Before it kills you, it drives you crazy with all the weird symptoms and effects. I am one of the lucky ones. I have known people who never got any treatment. For example one beautiful lady I met, talked and talked to me about her disease and wanted to have lunch. I had family obligations, and could not accommodate her at the time, so took her name and called her at home a couple of weeks later. She did not remember me, and was very fearful of talking with me. I never could get through to her to direct her to help I knew about. She had a devoted husband and lots of money, a prerequisite for Lyme treatment. So sad, I would guess she is not alive today. She had belonged to a Lyme support group of 15, and she was the only one still alive.
Marianne could you contact me. Peg gloflin1@bellsouth.net
My family member has AVN. Both hips had complete replacements, both Humorus bones replaced, has had several knee gone grafts. Lovenox injections twice a day. Is under age 30. Dr Charles Glueck is their hematologist. Now believe all bone issues related to thrompbophilia issues. If you have AVN please, see a hematologist early. Dr’s are great to treat your problems but hard pressed to find cause til too late.
I too have osteo of the jawbone. I live in Northern CA but am willing to travel anywhere to receive proper treatment so i can heal from this life destrying disease. My problems were initiated by a dental abscess and dental trauma post extraction. I experience terrible pain in my lower right jaw where the tooth used to be and also extreme systemic systems as my body tries to fight to clear the jaw bone of the toxins it now harbors in the dead bone.
any and all help is greatly appreciated. i have a young son and would give anything to have my health back so i can be a proper mom to him again.
i am sorry for all of us here who are suffering and pray the help we need can be found.
do any of the docs who treat ortho avn with stem cells treat avn of the jawbone with stem cells?
warmest regards, lisa
lisagrasso@comcast.net
Well, I was really happy to read through this information. I have done my pubmed searches but this helps from a patient point of view. I was diagnosed with AVN in the left knee (medial condyle) with a host of other knee issues (soft tissue and bone) without any trauma. I live in Canada and cannot find any surgeon/specialist with an interest or specialty in AVN. The surgeon who made the diagnosis is American travelling to Canada once/month and I was lucky to see him. I have been waiting almost two months just to get a date to see a specialist and this will most likely be about six months after they provide the date. Based on my pain levels, I CANNOT wait that long. Any suggestions within Canada or close to Toronto/Buffalo area would be greatly appreciated.
Hi there,
I am also in Canada, Ottawa to be exact. I too am finding it difficult to find a surgeon with an interest in AVN. I have had both my hips replaced, at 29 and 31. I was living in NS at the time and was on te list to have my knee replaced. My fiancée was posted to Ottawa with the military and the surgeon in NS would no longer replace my knee because I was out of province of NS and it made it difficult for the surgeon to get paid. So I have had nothing but trouble finding another surgeon to get over my age and realize that this knee pain is ruining my quaility of life. Nobody wants to replace a 33 year olds knee. So if you have had any luck finding an open minded surgeon I would love to hear more about them. Thank you and I will pass any info I find along to you! We have to stick together and look out for each other. Nobody understands how dibilitating this disease can be and how frustrating it is when nobody will help!
Hi there,
This is Marianne Rodgers. The e-mail is so pretty, but a little difficult to decifer, who is saying what. Your story is so sad. I have a close friend, we both have Lyme disease and we research, talk back and forth, exchange research, and generally tell each other that we are not crazy, just extremely sick.
I would not take fosomax if forced. I need to get to sleep so won’t worry about misspelling. My teeth are still good, but the puss has become so bad that I swollow it. I am going to Las Algodones, Baja California, Mexico, ostensibly to have my teeth taken out trying to get rid of this infection. I am losing so much bone, but what I have does seem to be strong. I take Cissus, bovine bone powder, chicken cartilage, boneset (kills bugs in bone). I think that is most of it. If I do not take these powders, my back hurts, my hip hurts, and my knee hurts. Obviously, I have not figured out how to get rid of the periodontal oral infection, and am still losing oral bone. Unless the dentists in Los Algodones have a better solution I will lose all my teeth next week. This infection is making me so sick that I probably will lose all my teeth. If the infection goes away, later I can get better dentures, and maybe even some implants to have almost normal teeth. I am enjoying my last week with teeth, but I am suffering after I eat, which I can still enjoy a little. The infection always gets worse after I eat. I took a food allergy test, when I could not use my swollen hands. I followed eating the foods I am not allergic to for a couple of months, and I can use my hands, and the swelling has gone down.
I am telling you all about me, but my heart goes out to you. You seem so young and attractive, and should be able to enjoy the life of a young person. If you like, I will stay in touch with you, and we can exchange our situations in case we can benefit each other. I did, pretty much get to enjoy my youth. Marriage, children, computer scientist, music. I hate being disabled pretty much now. I am trying to get well and be able to enjoy life again. It has become a full-time job, trying to figure out how to get well. this may be true for you too.
Have you tried to find out if you have Lyme disease. That is my real problem. If I can ever beat the Lyme, I will feel better, I know.
Let me know if you want to continue correspondence, and if so, I will let you know what works for me, if anything does. I will pray you find solutions. The idiopathic thing is just stupid. There is a cause, and if there is a cause, there may be a solution. All we can do is try, and try, and try, research, pray, and put our lives in God’s hands.
God bless you and keep his arms around you.
Marianne Rodgers
Just reading this 5/4/15…have you heard of coolief-radiofrequency ablation? May help you-it’s a long lasting nerve block. Mary
Your situation breaks my heart. I am a Lyme disease patient and with treatment from an LLMD I was “normal” 4-5 years. US conventional medicine jerked my treatment. I felt like my spine was going to separate. My son has studied herbs which saved his life. I have been taking bone supplements instead of taking the conventional medicine. My bones are so much better. I take boneset, bovine bone powder, chicken cartilage, cissus. I don’t know about the genetic problems talked about, but I do know the above combination has helped me and relieved many bone aches. Please e-mail me and I will send you web links where you can buy the above powders at bulk prices, much less expensive than from any known health or vitamin shop. This has NOT cured my Lyme at all, but it has helped with the bone problems.
Hi Marianne.and GMD , I was looking at this page because a friend of mine is about to have a hip replacement due to AVN. I saw that you have Lymes. I Have a friend who has cleared himself of Lymes and several others who are on the road to recovery. Including a Female Australian cricketer. Please dont hesitate to contact me if you still have an issue with your Lymes and i can put you in touch with my friend..
Kind Regards
Sascha
s_demidov@hotmail.com
Hi,
I don’t know if you will see this or if you got help. I am in Toronto and have AVN. I had both knees replaced in under a year and now both hips are affected. I am 38. I managed to find two doctors who consider themselves AVN experts. One isn’t taking new patients and the other is retiring. They both recommended other surgeons. I would be happy to give you the names, just have to find the emails. One is the head of St. Mike’s mobility clinic and the other is at Mt. Sinai.
Hi Marianne.and GMD , I was looking at this page because a friend of mine is about to have a hip replacement due to AVN. I saw that you have Lymes. I Have a friend who has cleared himself of Lymes and several others who are on the road to recovery. Including a Female Australian cricketer. Please dont hesitate to contact me if you still have an issue with your Lymes and i can put you in touch with my friend..
Kind Regards
Sascha
s_demidov@hotmail.com
could you please give me the names of the doctor’s in Canada who help with AVN please. my son just had both hips replaced.
I only know the GTA. Dr. Nguyen at Credit Valley Hospital is good for lower extremeties and Dr. Hall at St. Mike’s is good for upper. They don’t really treat AVN as there is no treatment but you can consider chinese medicine as they have some stuff
Would anyone be willing to talk with me about their experience. I have a son that acquired AVN Via Aplastic Anemia, steroids. He had his hips replaced 8 years ago but now thinks it has moved to his knees. I am trying to gain some insight on the pain he experiences, medications to treat the pain and how it has impacted quality of life. You can reach me at patrick1244@gmail.com or 913 205 1674. Thank You. Patrick
My sister has been frail these past few years with many ailments. She has recovered from cervical cancer not needing chemo or radiation. She has tripped and fallen several times and hurt her knee. Her doctor told her she had necrosis and needed surgery to correct the blood flow right away. I’ve never heard of this. She is in her early 50’s but feels like 80. This has depressed her tremendously. We want to help but don’t know what to do. She understands little about the disease. Any help would be very much appreciated! Kathy.Usher@yahoo.com
Have you had the ability to check and see if she has Lyme disease. Lyme can be treated but it is very expensive.
Can you email me doctors name in Indiana. I have ONJ have been treated since September and keeps reoccurring.
Have you checked to see if you have Lyme disease with an LLMD. Lyme can usually be treated, but it is very expensive.
Hello,
I am so glad I found your website! I have been researching the NOS3 T786C gene for a few weeks now after learning that I have the gene. I have long standing hypertension and a family history of stroke, I also have 5 year history of hip pain that I just assumed is because of my age. I have been experimenting with arginine, and found that it lowers my blood pressure but very unsure about dosage. I was planning on seeing someone knowledgeable about the NOS gene, but after finding your website I am more concerned about the hip pain. What is the treatment for either of these conditions and what kind of doctor should I seek? If you know of one in the Omaha, Nebraska area it would be a great help!
K. Rice
I live in the Northwest and am currently looking for someone specializing in osteonecrosis of the jaw. I am a cancer patient with bone Mets and have been taking meds for the bone for over 3 years and am starting to have long term infections and pain and a loose tooth in the lower jaw. The periodontist wants to pull the tooth which I think is wrong…looking for more info …
HBOT is treatment for ONJ. Hyperbaric oxygen, hospital grade. Oral surgeon prescribes and insurance does cover.
Peggy Loflin 865-661-6900
I am helping in research for my friend who has osteonecrosis in his knees and lives in Rogersville TN (East TN). I am trying to encourage him to get surgery, as his pain meds are overwhelming. He is apprehensive as he is 43….did you get arthroscope surgery? By whom? Thanks for any info.
Hi, I live in Knoxville Tn but had to travel for my sons AVN. One doc at Vanderbilt does do stem, but he is pediatric. He might have Suggestions( dr Jonathan Schoenecker), But for the knee, might look at Duke (that’s where we ended up).
I know more about hips that knees.. So my info may not be so useful, but I don’t think your friend will find anyone in Tennessee. Radiology could be sent ahead to surgeons for opinions.
Dr Cynthia Kelly in Colorado has a very good reputation. Duke also. Duke is driveable. Maybe check with Dr Robert Mather there.see who he recommends: (919) 660-2504
Peggy Loflin 865-661-6900
How do I find you on Facebook? I’m looking for support since I also have osteonecrosis.
Thanks!
Look for avascular necrosis support group or osteonecrosis support group. There are several on Facebook.
Where to begin? I have recently been diagnosed with bone infarcts in both R & L knees (femur, tibia) pain started in R knee back in Nov 2015. Only my knees have been xrayed. Only R knee has had MRI. I have significant pain in R knee, deep core pain radiating outward. Very minor pain noticed in L knee. I have had pain in my R hip for past several years, mostly at night, unable to sleep on R side due to pain. My R knee baseline pain is 2-4 in AM, growing to 8-10 in PM. Pain is not necessarily dependant on use, meaning I can be sitting in the lounge chair all day and pain cycle continues. If I do attempt to be mobile I am able to, with pain, but do not seem to “apy” for my activity until late in the day (PM) or next day. My med history in brief, I had a rare blood disorder age 19-22, polyarteritis nodosa. I was treated with high dose steroids and immuno-suppressants, cytoxin for several years, up to 450 mg prednisone per day at times. I also had a DVT in 1997 at age 42 diagnosed with Factor V Leiden genetic abnormality. Back to current issues, since my R knee joint, i.e., head of femur/tibia and cartilidge is intact, Surgeon has indicated no surgical action at this time…come back in a year! I can’t live like this (pain, limited activity, out of work) and feel I have no course but to call the Ortho surgeon again and let him know extent of and continuation of pain. Pain is increasing in both intensity and duration as time goes on. I have not read through your entire blog, but it appears that you had some procedure/treatment that has helped? Any suggestions for where to get more info on follow-up and treatment options?
Thank you. Alan
After almost a year of complaining to my doctors about pain in my hips, thighs, groin aea, and knees they finally did a CT scan yesterday. The results revealed that I have Stage IV avascular necrosis in both hips. Why didn’t they try and diagnose the problem sooner? They said I would need total hip replacement in both hips. They also found that I have the same problem in both of my shoulders. I live in Tucson, Arizona. They said I don’t have a fracture but all along the doctors all concluded the pain was being caused from a lower back injury. What advice would you give me? I can still walk but with a lot of pain and little steadiness. I’m sorry for what happened to you. What can I expect after the surgeries?
I think I deleted the Link for this. Hoping I can get back to it by posting another?
After several X-rays, a CT scan, and an MRI my primary physician, orthopedist, and pain management specialist all determined I had Stage IV bilateral avascular necrosis in my hips and shoulders. They want to do Total Hip Replacement in both hips and are considering shoulder surgery in my left shoulder. The hip joints have completely collapsed. They’ve done considerable blood work and I have even sent me to an endocrinologist and a hematologist before any surgery is performed. My Vitamin D level is at 4 and they have me on 50,000 units of Vitamin twice a week for now. The endocrinologist did a complete work up including blood work, a saliva test, and urinalysis to check my cortisol and testosterone levels. For the last 12-18 months I have had epidural dermal injections in my lower back after a fall in April 2014 that fractured my L4 and L5 vertebrae. Over the last two years the pain in my lower back continued to worsen and radiate down into my hips, thighs, groin area, knees, and legs, making it difficult to stand up from a sitting position, stand, and walk. My doctors and physical therapists all said it was just referred pain from my back. It wasn’t until September 2015 that I saw a neurologist for neck and shoulder pain that started in my right forearm, moved up to right shoulder, across my neck, into my left shoulder, and down into my left arm. They took X-rays of both shoulders and and MRI of my neck and found osteoarthritis in my shoulders but also discovered the necrosis in my joints. They did nerve tests which turned out negative and just kept me on pain medication (oxycodone and aspirin). During my physical in March I explained all of this to my primary physician and he did X-rays of my hips. He sent me to an orthopedist who did the CT scan and MRI of my lower back and pelvis. This is when they discovered the bilateral avascular necrosis in my hips. I had researched it some and had realized that I was having the common symptoms of this disease. The orthopedist and pain management doctors were shocked that no one had done a CT scan of my pelvis since 2014 after it had continued to hurt. My concern is what will the recovery be like and what kind of pain medications do they usually prescribe while in the hospital and after I go home. Someone had suggested meloxicam or also naproxen along with the oxycodone for my back and aspirin (I also take aspirin because I had the onset of atrial fibrillation in July 2011 and my cardiologist keeps me on an aspirin regiment just to be on the safe side even though I haven’t had another episode since 2011). Will I be able to walk normally again without pain and stand and stand up without pain eventually? I am only 42 years old. I am having blood work done again on Monday and seeing my endocrinologist on Tuesday to find out the results of the tests she ordered. Is it normal for the pain to radiate from the hips down all the way to the knees and legs so that walking is almost unbearable? or should I have them do an MRI of my knees and calves as well to make sure nothing else is going on there like a torn meniscus in one or both knees or damaged muscles in my calves or even multiple sclerosis? What concerns me too is what caused this disease? My doctor had me on lipitor and fenofibrate (for high triglycerides and fatty liver) at the same time for over two years before my fall and my gastroenterologist had me on 40mg of omeprazole a day for almost 3 years after an endoscopy showed a hiatal hernia and Barrett’s esophagus also in 2011. I had another endoscopy in 2015 and the Barrett’s was practically undetectable but I still have acid reflux and the hernia (he loweredmy dose to 20mg last year). My cardiologist took me off the lipitor and fenofibrate and didn’t agree with my doctor’s decision to prescribe both of them for high cholesterol. He put me on 40mg of pravastatin about a year ago this month. My cholesterol is back to normal and no longer considered high. All of my doctors have a different idea of what may have caused or contributed to my condition. In your experience, what do you or Dr. Charles Glueck conclude considering all of my other health conditions and medications. All of my blood work has shown much improvement over the last five years: high cholesterol, fatty liver, high liver enzymes, high red blood cell counts (hematacrit and hemoglobin), and hypothyroidism have been regulated and seem back to normal. It’s mainly the very low Vitamin D level my surgeon and other doctors are concerned about.
Thank you for this blog!
Hi to all on this blog. I have never written to a blog but am having so many of the same problems as the rest of you, I really want to share. I am 50 and have so far AVN in both feet, ankles, knees, hips, wrists, elbows and shoulders. Haven’t started looking at my spine but I suspect it is there too. I am also now in a wheelchair. I was a national champion runner, a big triathlete and bike rider and now I can’t even swim without fracturing my femur (that happened two months ago). I am a family physician and a mom and I feel like my life is falling apart. So far, I know Prednisone was part of my problem, doing research on clotting disorders and I also have Raynaud’s and migraines, so I suspect that may be a part of it. I am also struggling to find someone with more knowledge than me on AVN. I can’t possibly have all of my joints replaced. I had a bone marrow biopsy done in the Grand Cayman’s and now have to wait three months to get back in for treatment. I am doing hyperbaric treatments also. Do you have access to this? My insurance is actually paying for that. I use an infrared light that I put on my joints and I ordered a bone stimulator on Ebay that I am hoping will help. This is such an awful disease. I am, sadly, glad to know I am not alone.
From what I have read osteonecrosis can be caused by either severe vitamin c deficiency or a defect in the NOS3 gene which causes a shortage of nitric oxide causing reduced blood flow to the bones.
My names Christine and I have AVN in knees hip ankles tibia femer bones and they are still finding areas. Doctors did a case study and my case is sever. I’m very scared because mine was from steroids after a bout of phenomena and then more from unknown cause of liver and kidney failure. It started with ankles been working way up but I’m certain they will find it in upper joints due to pain in joints. I’m so frustrated at the lack of knowledge. I need to get help. I’m a mother and I want to live and move. I suffered for a while year in pain and called a drug seeker an ER abuser you name it then they started finding lesions and bone infarks every time MRI. My family can’t even understand the pain I’m in even though I’m on major pain meds. CBD tentiors help with pain when I can afford it and I can get 1000 ml doses from doc but it’s to expensive still. I’m begging anyone to help me find someone who can guide me to more info and understanding. I had stem cell decompression on hip and it’s been a mirical. Please email me if you can help. I’m fortunate to live in Colorado and have access to university and holistic docs but I feel I’m missing something I need to know I’m not alone and suffering. God bless you!
I am a healthy 62 yr female who dr. incidently found bilateral avn on a c t scan and confirmed early idiopathic stage 1 on an mri. Radiologist commented that it appeared to be a mature state and may never cause problems. I do have some slight pain at times. Don’t want to wait and see what happens. What is next step and type of doctor to see?? What to do to slow or stop progression??
Hi there
Found this site to be very supportive.
Hard to find concrete info or support on AVN.
Myself. Diagnosed 2 yrs ago.
Both hips now replaced.
Had ‘direct anterior’ hip replacement.
Back to normal life within a couple of weeks after replacement. Walked same day of surgery. Released same day, both surgeries.
I live in Canada. Had surgery done at London Health Sciences Centre in London, Ont.
Amazing young surgeon there who is familiar with AVN.
My fear now…will this spread to my knees…shoulders…jaw.
I am so paranoid all the time.
I see so little info about AVN online and doctors seem to know so little about it.
I have aches and pains now in other places becides hips…should i be pushing my doc to investigate in case it is AVN… or am i being paranoid.
Thank you everyone for all the posts. Very imformative. If i can help anyone, please feel free to ask.
Especially the surgeon in London….exceptional.
Also, about getting info on-line, it is hard to know, VERY HARD, whci sites a reputable and proovide you with information that is peer reviewed. As far as aches and pains in other joints/areas, your doc knows or if he doesn’t knnow, he is not doing you any favors by not referring you to a second opinion. https://ryortho.com/2013/10/the-top-26-foot-ankle-surgeons-in-north-america/
Hi there,
Did you find out why you have avn?
I too suffer from this. Both hips now replaced. Aches in other joints now. Family doctor has no clue. Amazing orthopedic surgeon but he just replaces joints. Does anyone understand this?
Anything or anywhere you can direct me would be eternally greatful.
I will travel anywhere.
I live in southwest Ontario.
Ryan
Mine is steroid and lupus related. I see Dr. Nguyen at Credit Valley in Mississauga for my knees and hips and Dr. Hall at St. Mike’s for upper extremities. I live in Mississauga. I can’t find a doctor who will do anything other than tell me to go away and wait for collapse and then I can get replacement surgery.
Hi, I’ve met Dr.G previously yet I can’t seem to locate him now. Were on our second hip an I actually wanted to share some information regarding myself. See he my was fiancee and I have some similarities. I was in a car wreck and had broke my pelvis plus other stuff. My fiancee was having issues with his back as a result we found that he had AVN. After speaking with Dr. G he thought I was going to eventually have the same result, but I don’t. I reviewed some of his paper’s and started working through his information and figured out some things. I attempted to contact him regarding this, but was unable to receive a response for whatever reason. If the epidemiological part of this stems to blood then we have a major concern for our son. I know this is a lil out there , but have you looked into blood doping? I know that this wouldn’t have been approved research when he was with The Jewish Hospital.
I’m a 72 year old man and was diagnosed two years ago with osteonecrosis in the navicular bone of my right foot. I believe I have had the disease much longer than that. Going back about a decade I have a history of spontaneous and unexplained fractures in my foot.
There is no explanation as to why I got it. I’m not part of any of the risk groups normally associated with the disease, The Doctor says it’s just bad luck. It’s very painful when the bones break but it becomes bearable after they heal.
The structure of the foot is now just about completely collapsed and the foot is badly deformed. It makes it difficult to buy shoes that fit comfortably.. I’ve found that industrial type safety shoes are about the best.
I’ve always enjoyed long walks but walking is uncomfortable and kind of awkward. Luckily It hasn’t impaired my ability to ride a bike, so now I take long bike rides.