Osteonecrosis / avascular necrosis of the hip, it can be bad. I kinda agree with the ortho - be as reluctant as possible with a hip prosthesis. I don't like the term "hip replacement", cause it makes it sound like you change the hip with an equivalent. It's not. A metal prosthesis has a limited life span - 10 - 20 years. Given enough time, the prosthesis will eventually fail. He's young, so he'll be doomed to have a failure while still in prime age. Then he'll have a bigger problem, since replacing a replacement is a much bigger surgery, sometimes it may not be possible at all, and there's a chance he'll have to remove a hip joint altogether while still only 40-some years old.There's a chance his osteonecrosis may dwindle, without completely destroying the femoral head. Sometimes it just leaves a small irregularity in the top joint surface, and it can be usable. I often see that the "acute" inflammation like necrosis dies out. It would be wise to wait and see how things progress. Hopefully, he can have pain relief with medications temporarily.So, I think the treatment right now seems wise. You want the problem to be solved right now with a hip replacement, but the ortho know that will bite you back in a few decades. When he says it's mild, he's probably referring to how it looks on xray, and mild there is a good thing.
Husband with osteonecrosis and little game plan besides narcotics- is he being managed appropriately?Just a HUGE thanks in advance to anybody who responds. I'm a talker and I'm livid right now, so I'm trying to keep this just to necessities but may fail and leave out key details and/or talk about things that aren't necessary. To preface- I come from a "medical family" but it's primarily neuro and psych rather than ortho. I devour medical literature, podcasts, etc, have worked as nursing staff in psych and derm, just got my master's in health sciences, and am planning to apply to med school this cycle- so basically, please feel free to talk to me in technical terms, link to articles, etc as appropriate.Now onto the issue.Husband is 28M, 5'8.5", 225lbs, white, occasionally smokes cigars (maybe a cigar or two a year?), and drinks moderately (down from heavy drinking a few years ago as part of work culture). About 5 weeks ago was diagnosed with osteonecrosis in both femoral heads. Started having pain just in his right hip in May, but really started to notice in June as it was limiting mobility. Got to the point in July where he couldn't go up and down the stairs- I was gone and he was texting me he had to army crawl back up the stairs to bed. Initially, he got an x-ray which had some "fringe" or something to that effect (I wasn't in the appointment so I don't really know what was said about it) but was concerning for possible osteonecrosis and MRI was recommended. While waiting, he went to PT, and the PT thought perhaps bursitis if not ON, but the pain kept worsening. Got an MRI at the end of August which showed osteonecrosis in both hips involving over 50% of both femoral heads. Right side had marked edema extending into the femoral neck and noted a "mild asphericity of the head consistent with mild depression," subchondral fluid cleft, and diffusive mildly thinned cartilage. Left side had edema as well extending into the neck.Husband was referred to ortho, which in itself was a headache as PCP had to send that referral FOUR times. As we're waiting, his pain is getting worse to the point where he was using a cane and then progressed to needing a full set of crutches. If you could see his gait- it's just awful and was placing stress on other joints and was leading to back pain too. PCP started him on Celebrex 1000mg QAM for two weeks and then 500mg QAM after as well as gabapentin (titrated up to 900mg QHS). Got several labs drawn to check for a cause- including autoimmune labs- and the only abnormality was low vitamin D (15 ng/mL), so he was also started on OTC D3 5000IU daily and a prescription weekly dose of D2 (I can't remember the dosing). . The Celebrex seemed to help him the most, but after about a week on that, it was still only "barely" helping. As time went on waiting for ortho, the way he described the pain and sensation also changed, with more "grinding" pain.In what I've been able to read, it seems there are treatments that can help the pain (narcotics, staying off the joint, fluid aspiration for edema) and may treat earlier stages of disease (eg, core decompression, treating underlying cause to get blood flow back to the bone), but once the femoral head collapses, hip replacement becomes standard of care.When we were finally able to meet with ortho, the doc, while personable and nice, didn't really give us a lot of info. He didn't stage the disease at time of MRI, but kept saying "mild." This annoys me because with the amount of pain he is in and asphericity of the femoral head, I wouldn't classify anything he's experiencing as "mild" myself, and surely not "caught early/in early disease stage." We tried to impress the pain aspect and how limited his mobility is because of the pain. Doc kept hinting at "something stronger" to manage the pain and said we could schedule for aspiration for the edema. Also mentioned that he needed to stay off the joint as much as possible and should be using the crutches for any walking. Husband is terrified of needles (aspiration is done fully conscious and may need to be done every week or two to control pain from the edema), and with a history of SUDs in his family, being on narcotics for longer than a few days is also terrifying and he prefers not to. We asked about hip replacement, and he seemed not to want to do it, citing Husband's age. ORtho requested workup for potential coagulation disorder because we could "save the hips" if this was caused by a treatable clotting disorder, and he referred to hematology. No further discussion about replacement or why he didn't want to pursue it- just the age and potential for a clotting disorder.Neither one of us was thrilled with this. I wasn't convinced that restoring blood flow would magically re-shape his femoral head, especially with how he is now describing grinding pain. His half sister also does have a clotting disorder, but it's Factor V deficiency, so it's that she doesn't clot appropriately. But fine. Took them a week to get the referral to hematology, and a few days later, we have to call hematology and essentially was told he is a "low priority" patient and they wouldn't see him (they were rude, but I do get it because oncology patients need to take priority). Ortho refused to order the tests because "we don't really order tests" and said they'd send it to PCP. No follow-up scheduled with ortho until after the coag tests. This was about two weeks ago.About 10 days ago, his pain advanced so much that he finally did call in to the ortho clinic to as he was unable to sleep he was in so much pain. I picked up a script for 5mg oxycodone for him, and he's been taking this before bed reliably since and sometimes needs it during the day due to the pain. He hates it, and it barely touches the pain anyway. He called again last week because he is still in so much pain and essentially demanded to see the surgeon himself so we can get real answers about how we are not just going to "manage" the pain but resolve it. Thankfully, we see the surgeon tomorrow.Anyway, so today, we were able to meet with his PCP via telemedicine (he couldn't get to the actual hospital due to his limited mobility right now and still make it to the ortho appointment tomorrow). His PCP essentially said they a) weren't going to order any of the coag tests ortho wanted (they didn't have any notes from ortho and "it isn't standard of care") and if they wanted coag tests, they'd have to order themselves, and b) my husband "needs" to be more active, going to PT, walking, swimming if he can't put weight on it (note: the only pools here this time of year are at expensive gyms we cannot afford to go to), etc. My husband literally cannot do that. If he goes up and down the stairs more than once in a day, he's knocked on his ass in pain for the next 24 hours. He tried to impress this upon her, but she just kept saying how he needs to move it to avoid muscle atrophy, and if he can't, then the pain isn't managed appropriately. I don't disagree about his pain- it's not managed well at all- but her solution was to increase the gabapentin which tbh I don't think is helping him at all anyway. The bit about moving the joint more though directly goes against everything I've read about the disease, what the ortho told us, and what he experiences- he can manage his pain by being totally 100% sedentary, but that's not a lifestyle he wants (nor what is good long-term).So, wonderful docs of reddit, is he being managed appropriately so far? Is there something more I can do to ensure he has good care? I don't go into telemed visits with him since he takes him on headphones, but I do have to go with him when he goes in to the clinic since he cannot get around with me. I asked my older sis to send me some of the info on UpToDate so I can read more about what is actual standard of care. I cannot for the life of me feel good about it, and I feel like nobody is listening to him and his pain and what HE wants (solution, not management). Our world has radically shifted very rapidly, as he cannot do much at all or engage in hobbies or household chores or even the fun parts of a relationship most of the time. We are seeing a therapist to help manage it, even, but all the medical teams seem to be doing is throwing narcotics and giving him mixed messages and refusing to actually give us real insight into the disease process or why they don't want to resolve it. And yeah, I'm really mad about it all.Thanks again to anybody that can give me any insight into this.