Question for my husband

[Minniemuis]

Hello everyone,

First let me tell you that I am very happy I found this forum. My husband is struggling with what we are told are hip OA symptoms for almost a year now and coming friday we have an appointment with Dr Koen De Smet. However, I would also like some input from people who have had first hand experience with hip OA and resurfacing.   I hope you don't me asking a few questions.

My husband is a 50 year old former elite runner, i.e. former may not be the correct word, since he is still a high level runner. (although not much running lately) He is also a personal trainer by profession. About a year ago, he felt a twitch in his groin, which was first attributed to the psoas. However, it did not go away. He was then sent for x-rays to rule out hip OA, and the result was optimistic, no loss of joint space and a just little loss of cartilage. However, a few weeks later an MRI was done because the pain remained, (groin, side of the hip, sometimes buttocks), and then the shock came : possible labral tear, diffuse loss of cartilage, a level 4 cartilage defect, a subchondral cyst and cam deformation. Needless to say my husband was completely devastated, as I am sure you can all relate to. Sports are his life and also his profession, and we are hoping that this is not the end for him. If so, I am afraid our next medical appointment will have to be a shrink 

The few questions I would like to ask are :

- can hip OA come out of the blue like that, without any previous warning and be so serious all of a sudden? So from superfit athlete to this in months?
- is it normal to have no morning stiffness? Also, he has no real Rom restrictions.
- is it normal that a corticoid injection did nothing at all for the pain? Not even 1 day? Someone else we know also had a resurfacing done but after many years of struggling. Also, his first corticoid injection eased his pain for about a year.
- for any athletes out here: his pain does not get worse during running, or weighted squatting, however it becomes more painful after. Does this sound familiar?
- how long have most of you 'suffered' before you decided to have the resurfacing done

Maybe this is a classic case of denial or just wishful thinking, but sometimes I feel that what my husband is experiencing is not all due to hip OA.
He has struggled with chronic pain for 5 years now, (achilles tendons, knee tendons, shoulder problems and now this) and there is such a thing as the brain becoming overly sensitive to pain, so maybe his brain is exaggerating the pain in the hip...?

If you are still here, thank you for reading this and also thank you for any advice you can give us.

[jimbone]

Hello-

I won't be able to respond to all your questions from personal experience but a few with related experience.  First keep in mind that everyone responds to OA in their own way and there are no universal symptoms or course of OA development.

- OA can deteriorate a joint very rapidly.  It generally is a long development and gradual deterioration but at some tipping point it can become very acute, very quickly.  I knew I was going to need both hips done but was really only having severe symptoms in my left which was done first with the second scheduled for 8 weeks later.  During the 8 week period my right hip went from discomfort to unbearable and as bad as the left in that very short period of time.
-  I had severe restrictions with ROM but one major symptom had become weight bearing.  I would think his symptoms might highlight one set of symptoms and not effect others.
-  I never went for shots but have read of many other peoples experiences and it seems like steroid shots are a roll of the dice- work for some, not for others and many have said benefits were short lived, or not at all and even good 1st time and no help on the 2nd.
-  Pain after a workout might be contributed to numerous reasons.  As the joint deteriorates the muscles and soft tissues try to adjust themselves to keep the joint stable as it can't do that for itself as well any longer.  If exercising tensions those muscles and stabilizes the joint temporarily it might be speculated that post work out as the muscles relax the joint experiences greater instability hence more discomfort.
-  Like many people here I held off, rationalized, used avoidance and denial until I could no longer kid myself.  As a friend who needed scoliosis surgery said to me, "When the pain gets bad enough you'll get the surgery".  She was right.  When I could no longer walk a mile without excruciating pain, needed crutches for the 1st hour most mornings, a flight of stairs was a painful challenge and over the counter meds did nothing to help I got serious about surgery.  Probably 5-7 years of toughing it out- painful years of diminishing quality of life.  Got the surgery and got my my life back.  2+ years, bilateral , pain free, no limitations that effect my activities and enjoying living again.

Surgery is a big decision but you might find when reading through this website the overwhelming majority of people that have had HR are super satisfied with the results, including many high level athletes able to recontinue their sport.  Given the many advances to devices and surgical techniques that have evolved since even the early years of this website, I am a firm advocate for people taking advantage of these advances by finding the right surgeon and putting the pain and the OA behind them.  Best wishes.

[catfriend]

It may not have been out of the blue. The joint may have been deteriorating without him noticing any symptoms until he did, followed by his downhill slide. It's a different experience for everybody, and even from one joint to the next. There is no one firm pattern to joint failure. As for stiffness and range of motion I can tell you that these were minor in my right hip, but my left is extremely stiff and limited in motion. With my right hip I spent nearly a grand out of pocket on an injection into my hip joint. It lasted five weeks. Big waste of money. I've been told that for some people they work really well, others not at all, and for some like me just a few weeks. I would never do this again. Regarding him feeling worse after exercise than during, not a surprise. Think about it. He starts out feeling more or less fine, then engages in an activity which inflames the joint. The resulting inflammation causes the pain.

There is not one pattern to joint deterioration. Each joint and individual experience this differently. Some things are more common, but not necessarily universal. I can tell you that the experience and sensations for the deterioration and failure of my right and left hips has been completely different, but the root cause is the same: hip dysplasia leading to early osteoarthritis.  IOW what you're describing for your husband sounds entirely plausible to me.

I think everybody waits too long, myself included. There's no correct amount of time to wait. If he's in pain, and he's not going to get better without surgery (and arthritis doesn't heal itself), and it's affecting his daily life, then it's time for surgery.

[LDub]

Hi Minnie

Wow that is an amazing story. It is true most people have very different experiences with their hip OA but your husband's story is nearly identical to my own. I too have had a very active lifestyle and began to experience very minor issues with range of motion about 2 years ago. Stuff you just dismiss at the time. This grew and became an issue about 18 months ago. It started with what seemed to be a groin pull (hockey related supposedly). I sought treatment and got a similar psoas diagnosis (from my gp) as your husband did.

I tried to resolve this with physiotherapy, massage, ims, etc. and also tailored my gym workouts (based on the advice of a very respected injury recovery trainer) around it. But I found my rom still decreasing. That seemed odd to me. As I had always been very diligent with my stretching.

I had an x-ray and it looked very good according to the radiologist. My doctor examined me again and doubled down on the psoas diagnosis. But I started to see issues with rom (like tying my skates or putting on shoes being oddly difficult). I badly wanted to discount hip OA as the real culprit as I have first hand experience with it.

My wife (who I would term extremely active) and I went to India twice (11 and 10 yrs ago) (she was 48 then). My wife had both hips resurfaced by Dr Bose and his group (who were great by the way). Just so you know, she is back doing everything she did before her hip was an issue (Cycling, ice hockey, hiking, badminton, pickle ball, etc.). She is still super active and has no issues with her hips whatsoever.

Oh and by the way, before going to India she endured about 3 years of misdiagnosis and advice from orthopedic surgeons who told her to wait 12 years and get a total hip replacement. The same sad story you hear on this forum over and over again. So I was mentally prepared.

Anyway, eventually a friend recommended I visit a physiatrist he had seen. This particular physiatrist is an MD who uses ultrasound to diagnose your issue on the spot. He took about 30 seconds to look at my hip and said your have osteoarthritis. And I thought "well of course I do".

I have been busy re-reading the literature for the last few months (trapped indoors a lot from that pandemic thing ). And the only really new thing in hip resurfacing is the ceramic on ceramic prosthetic. I bring that up as you mentioned Dr. De Smet in your post. He is one of the few doctors currently doing CoC, so you might look into that as a option.

Check this post: https://surfacehippy.info/hiptalk/index.php?topic=6771.msg61467#msg61467

For a bit of a discussion I had with some other members on CoC. You are very fortunate as you are able to see Dr. De Smet in person. From all accounts he is an outstanding surgeon and his success rate is frankly amazing. I'd love to hear about his comments on CoC as I am leaning that way myself.

To address your questions (keep in mind this is based on my and my wife's experiences):

- can hip OA come out of the blue like that, without any previous warning and be so serious all of a sudden? So from superfit athlete to this in months?

My experience was that I went from what felt like a minor groin injury (which I had experienced in the past so it wasn't abnormal) to a real issue in mobility in about 8 months. My wife thought she had injured her hip after being checked playing hockey. She pursued the injury with that diagnosis for about 12 months maybe. Saw specialist, gp's, x-rays, sports medicine specialists. Eventually seeing an ortho surgeon who got it right. 2+ years to get to the diagnosis. I have heard anecdotally from a sports medicine trainer (who works with pro athletes) that if you are fit and training all the time your body (muscles, anatomy) can compensate for the problem until you reach a tipping point. After that you go downhill fast. 

- is it normal to have no morning stiffness? Also, he has no real Rom restrictions.

I still don't have any consistent morning stiffness. I feel it much more in bed than anywhere else. However once I get up it disappears. My rom restrictions came on later. If he has OA he will eventually develop a rom problem. Tie both shoes and see if it feels equally comfortable. That was the tip off for me.

- is it normal that a corticoid injection did nothing at all for the pain? Not even 1 day? Someone else we know also had a resurfacing done but after many years of struggling. Also, his first corticoid injection eased his pain for about a year.

I think it is typical that the second injection be less effective. I was offered the injection by my physiatrist. I declined immediately as I had read it's very hit and miss (even with ultrasound to direct it). He immediately told me it is only a stop gap and only a subset of those that get it see any benefits. Look for a solution.

- for any athletes out here: his pain does not get worse during running, or weighted squatting, however it becomes more painful after. Does this sound familiar?

Yes. This is exactly my experience. It hurts when I hike on (uneven surfaces) or when I apply weight to the outside edge of my right skate. But the gym is still fine. In fact if the hip is sore it will feel better after my workouts. I assume this is the muscles tightening and blood flow increasing, effectively stabilizing the joint. I literally limp to the gym some days and stroll out. But I must admit my hip is becoming kind of schizophrenic. It will get sore some days and not others and I can't really identify why. But the gym is not a problem.

And yes, some workouts can generate real discomfort (I don't know if it's pain yet). I am purposely trying to avoid pushing so hard it hurts a lot afterward, but still working my muscles (and joints) as much as I can. Admittedly it is difficult to judge sometimes. At times I find the discomfort troubling. I worry I am pushing the hip. But most agree you can't hurt it much once OA has developed. And I do plan to have my surgery as soon as I can get immunized against covid. So I allow myself to push.
 
- how long have most of you 'suffered' before you decided to have the resurfacing done

My wife put up with it for years but only because we didn't realize there was a solution. For me I'd say it's only really been 6 months of what I'd call a "problem". But the moment the physiatrist said OA I knew I was having resurfacing. Having lived with someone who went through the process is very instructive You can't recover from OA. But your muscle mass, flexibility, strength, etc can and will slide eventually. I personally see no upside to delaying. But everyone is different.

- Maybe this is a classic case of denial or just wishful thinking, but sometimes I feel that what my husband is experiencing is not all due to hip OA.
He has struggled with chronic pain for 5 years now, (achilles tendons, knee tendons, shoulder problems and now this) and there is such a thing as the brain becoming overly sensitive to pain, so maybe his brain is exaggerating the pain in the hip...?

No. I can't agree with you there. I am pretty sure it's real OA (based on my experiences mind you). Take your x-rays with you when you see De Smet. He may take another set too, depending on how old they are. He will be able to diagnose your OA. I envy your access to him. And please let us know what he says (particularly about CoC).

Cheers.

[PistolPete]

I had my right hip resurfaced 10 years ago.  I first noticed my leg was longer than the other.  My primary sent me to a chiropractor to try to reset my hips.  They ended up running an MRI and noticed some OA.  I went to a orthopedic surgeon and he took X-rays.  When he pulled them up he said “omg there is nothing I can do for you”.  He sent me to a specialist that was going to just scope it.  Doing research i determined it was u likely to help. When it first happened there was no pain and then the pain came quickly along with major loss of mobility.  I was in a ton of pain pre op and it was gone once it was over.  I’m a Martial Artist and I’m into bodybuilding.  Once recovered I was able to train Jiu Jitsu, kickboxing etc.  I was also leg pressing over 1000lbs without issue.


Fast forward to last year and my mobility got really bad.  X-rays showed my hip was done and locked up.  My pain this time around wasn’t nearly as bad.  However, I decided not to wait for it to get worse so I actually had surgery TODAY.  I’m currently in the hospital as I type this.  I’m not in much pain just really stiff.  I would 10000% recommend this surgery if he needs it and he will be able to go back to a normal life. 

[Minniemuis]

Thank you all so much for replying. To be honest, the replies were not exactly what I was hoping for, but then again, maybe it is time for us to face reality.  Now at least one of us is mentally prepared for what Dr De Smet will tell us 

It will take a lot of convincing for my husband to want the surgery done, for now he is just flat our refusing, he is afraid that if something goes wrong, that he will be even worse than he is now. I realize having access to Dr De Smet is a blessing in this case. I have known my husband for a long time, running and sports really are his life, (as well as his profession), so I know he will have a really hard time coming to terms with this.
His body (being his pride) is now broken, that's how he sees it.

To be honest, I am also struggling with this, both of us are really active, and I was convinced we'd be running for at least another 10 years...

Any runners on this forum who still run fast after the resurfacing? 

Also, how much of an adaptation is there in daily life after a resurfacing? e.g. I read that you can no longer cross your legs... for me that is far from 'your hip will be as normal', and this is just one thing. Thank god for this forum, I guess we will be doing lots of reading, however, it cannot be all sunshine and rainbows, I am afraid to read negative experiences...

[MarvinB]

Hi, Minnie!

Welcome!  Tell your husband that he’s not “broken”, just down for maintenance!  Even a Ferrari needs a tune-up now and again.  He’ll be down for a while, but definitely not OUT!  I had my right hip resurfaced coming up on six weeks ago and have taken on the challenge of getting back to skiing, golf, hiking and all the other activities I’ve enjoyed with my wife/adventure partner over the almost 30 years we’ve been married.  I’m also looking forward to sitting crosslegged on the floor in front of the Christmas tree next year, instead of my wife handing me presents to open in my recliner!  At 1 year, he should be NO RESTRICTIONS!  That “no crossing your legs” thing is for total hip replacements.  Yoga is for us Surface Hippies!   

Your husband can send hiis imaging to Dr. Gross in Columbia, SC and he can give you a second opinion remotely.  i had 3 surgeons say THR before I talked to Dr.G.

Best of luck to him (and you!).  For a little inspiration, check out Kay Glynn’s videos on YouTube x another Dr. Gross patient that took up pole vaulting after hip resurfacing!

[petemeads]

Hi Minnie,

You ask if there are any runners who still run fast after hip resurfacing/replacement - yes, several as far as I know, there is a website called HipRunner where you can pick up more success stories. Not just speed but ultra-distance as well.
My own story has been told on this site, I had a BHR 6 years ago and a THR ceramic/ceramic nearly 4 years ago and have just had my 70th birthday. The THR became necessary because my femoral head broke off (poor bone quality) during my second BHR operation. The THR leg possibly has more ROM than the BHR and I have no problem crossing legs etc, I have carried on rock-climbing and bouldering without worries about making unusual movements. Speed-wise I cannot match my 5k time from 10 years ago but in Master's age-grade terms I am about the same percentage as I always have been. Just before and just after New Year I have been attempting virtual county standards  and have managed Gold at 1 mile, 5k, 5 miles and Silver at 6, 7, 10 and 13.1 miles and 30 km. Tell your husband to get it done!

Pete

[blinky]

Oh Minnie, this is all so familiar.

My issues seemed to also come on all of a sudden. Back when I was 49 yo, not an elite athlete but very active and in terrific shape, running 4-5 marathons a year, I thought I pulled a muscle when doing an hour butterfly swim. Docs concurred. But I couldn't seem to get over it. I could still run pain free, but I could tell my gait changed. Then I attempted the Houston Marathon and just fell apart. Training for it had gone fine, but the run was awful. My body just wouldn't obey. It wasn't pain so much as failure. What was wrong with me?

Finally a doc took an xray and saw the OA. I knew I was on the path to THR, but tried to deny it. I spent a few years with PT and injections. I was certain I could out train this. It just got worse and worse. Finally, barely able to walk a block, not so much from pain (though there was pain) as just not being able to force my body to do it,I started looking around for the best THR for runners and found this site.

Five years ago Dr Gross resurfaced both hips. (They were both awful, even though I only complained about one.) Today I can do what I want, no hip pain. (We won't talk about my other parts, including eyes and brain.)

So...yes, it can seem to come on suddenly. It has probably been slowly getting worse. Your H may have high pain tolerance which allowed it to advance steadily without affecting his performance. A few months before surgery, I could squat and stretch and generally "pass" the OA tests when asked. I could still fool the docs until they saw my xrays.

And yes, his denial is normal. Not sure how to get past that. He will need time to accept this diagnosis. Knowing there is a good solution out there should help. HR is not 100% effective, but the odds are in his favor. I remember thinking what if I am in the 5% who does not do well? Should I stay with the familiar or take a chance? My condition was so bad and the odds were so good, I decided to take the risk.

Because resurfacing IS a good solution, especially with the new ceramic hip. Athletes DO return to their sports. He is not done.

A final thought:  this is not a life threatening condition. I know it feels urgent and awful but it is not an emergency. Let him take his time to explore all his options and wrap his mind around this. A joint replacement at fifty is a shock.

[rday12]

I completely understand your and your husband’s hesitancy. But, you should both be excited about the return to pain-free life that this surgery will provide.

I am about the least flexible person I know. Even I can cross my legs. 

[Minniemuis]

Just a quick update. We went to the Anca Clinic, however, it was not Dr De Smet himself but a colleague. The doctor looked at the mri, and they also took another x-ray, and alas, the verdict was as feared. It seems my husband has some kind of birth defect which attributed to hip OA. During the physical exam the doctor bent and twisted my husband's legs in all directions (as others have done before) and after 2 minutes he said, I know what is going on here, I have seen this before in athletes... apparently the things he did were supposed to be really painful whereas according to my husband it was more like yeah, i can feel that a little bit... athletes usually have a higher pain tolerance, that was probably why it went undetected for so long.

So, where do we go from here? Obviously, resurfacing is the only option. When, that depends, when he no longer wants to suffer. Also, he has not been on anti inflammatories, so we will try and see if they help a little, that and turmeric maybe.

As for Recerf (ceramic), that is not yet available in Belgium, it seems. They are starting a clinical trial in the near future but due to some legal issues, they cannot do in in Belgium, and they cannot include any belgians either. They did say that my husband would be a good candidate, had he not been belgian. So for now we will see how it goes, let the idea sink in a little bit. In the meantime, I will definitely be doing some more reading on this forum.

Thank you all again for the kind and encourageing comments.

[PistolPete]

That really is a lot to take on.  It's always scary when the outcome is what we had feared.  He will get his life back though and be able to do whatever he wants once recovered.  I put off my first one for way too long and didn't do that with the second.  I'm 2 days post op and it does suck but knowing that I will be back better than before so I'm just focused on that.

[LDub]

Hi Minnie

Thanks for sharing your experience. I had a few questions:

>It seems my husband has some kind of birth defect which attributed to hip OA.

Did he name the condition? Did he mention perthes syndrome or maybe hip dysplasia? 

>As for Recerf (ceramic), that is not yet available in Belgium, it seems.

Recerf is still in trials. There may be rules prohibiting Belgians in the trial (guessing). I have been communicating with one surfacehippy memeber here who had bilateral CoC in Belgium with De Smet just 3 weeks ago. But they are not from Belgium.

The good news is that your husband is a good candidate for CoC or MoM (I assume). So when the time does come he can choose from all the options.

Cheers.

[Minniemuis]

@LDub - the birth defect had more to do with the shape of his femurhead which was slightly tilted or something along those lines.

The CoC may be a better option though, since my husband is quite short  - his being short is also the reason why our medical healthcare system unfortunately will not cover the MoM procedure, if he decides to do so. Belgium has a very good healthcare system, and resurfacing under age 55 is covered with the exception of resurfacing heads smaller than diam. 52mm, and my husband will definitely need smaller, we are told.

O well... time will tell

[blinky]

How far from approval is the ceramic? Can you wait? Any sort of humanitarian exception to the rule? Or a second passport you could use? I have known people to come to the US to be treated with new tech and have it covered (altho not from Belgium).

Could you pay cash up front? Sometimes docs will charge less if you just pay. (This may be more of an American thing, since we have a terrible insurance system.) Is travel to India an option? It used to be. Dr. Gross has a pay upfront option for the uninsured/underinsured.

I guess there is no "get treated anywhere in the EU" exception.And it wouldn't help you get to England anymore...thinking of the UK since they have ceramic hips.

THR is not terrible. There are much better prostheses these days.

Wishing you and your H luck. There is time to think this through.

[LDub]

Wow. That is a conundrum. The solution would appear to be paying for it yourself.

I know that is a bit difficult to hear. Our healthcare here in Canada is free also, so I know it's troubling to get your head around paying for it. But there it is. The province I live in does not pay for resurfacing. The one next door to me does. So I can see it over the provincial border but can't get it. 

I understand how Belgian medical care might not want to fund an untested prosthetic. It does make some sense. And if you pay yourself maybe you can stay in Belgium to have it done.

Look at it this way. If you can afford to pay for it you give yourself the freedom of choice. The surgeon you want and the prosthetic you feel is the best for your lifestyle. Most people on this forum are forced to travel some distance for surgery.

If Belgium is out, you could go to South Africa or Rome (but don't think it's done in Rome yet) for the CoC with De Smet (or one of the two other surgeons Paul Beaule (Ottawa) and Bill Walter (Australia) who are in the trial). But De Smet has done far more surgeries.

My wife had her hips done by Dr. Bose in India as he was doing smaller men and women at the time (12 years ago). But those smaller sized prosthetics have been withdraw now so he isn't doing it anymore.

I have no information regarding the speed of the approval process. The first CoC prosthetic was put in in Sept of 2018. So the process has been going a few years. You might be able to get some crude estimates on approvals if you probe De Smet.

The fact your husband actually wants to wait may be in his favor.

On a completely unrelated note I remembered watching the Andy Murray documentary about hip resurfacing. Strangely enough it's called "Andy Murray: Resurfacing" 2019  . You and your husband might find it interesting.

Spoiler Alert: He doesn't actually get resurfacing until near the end of the film. But you can watch how he trains to try to overcome his hip issues. He has since returned to play at a very high level.

Cheers.
 

[Minniemuis]

I will look into the Andy Murray documentary, I just need to find out how we can watch or download it.

As for the resurfacing, for now my husband plans to wait. How long... no way to know, that will depend on the pain and the restrictions that come with it. Also, I feel he needs more time to come to terms with this. When times comes we will see if the CoC is available yes or no - they said they were starting a trial, so I assume it will take quite some time. Also, there are no long term results on CoC.

As for payment for the operation, that is not really an issue, I just think it is a pity that size matters.

To be honest, I we could switch hips, I would, I really feel for him... but there is not much I can do besides support him and tell him that everything will be allright. 

[Saddlepal3]

Be aware that there is a "window" for when a resurfacing is appropriate. If there is too much damage, it may not be an option any longer. An experienced resurfacing doctor can advise your husband on this.

[Minniemuis]

I asked the doctor about this, he said this was not the case, whether he does it now, in 2 years or even in 5. (Except in cases of femoral neck necrosis)