Re: Idiopathic Bilateral OA - More questions

[Guest guest]

Hi, I just read your post on " idiopathic OA " in both hips. Wow! I just had OA

in my left hip and the pain was pretty awful. I'll leave it to others who know

more to talk about having both hips resurfed at the same time. But I wanted to

share with you that I, too, was totally horrified about such serious, structural

surgery. (I mean, once done there is no " going back. " ) However, once I learned

that I was bone-on-bone in my left hip, I knew that it wasn't going to get

better. The amount of Advil I was taking to control the pain was staggering --

and dangerous. I finally went to Vicodin and Arthrotech and that meant that I

had to modify my job duties to the point where I wasn't really able to do my

job. Oh, I could show up -- but because of the nature of the meds I was taking,

I couldn't do what I needed/wanted to do. So I went to see an orthopedic

surgeon here in my area. He recommended THR and scoffed at resurfacing. Whew!

I mean, the very idea of cutting off the femoral neck and plunging in that huge

stake left me really, really shaken. THEN I found this resurfacing group on

line. And found Dr Gross's name mentioned many times. I'm in KY, he's in S.C.

So I could get there. I had lost enough quality of life due to pain and the

restrictions it put on me. I knew it wasn't going to get better and that it

would get worse. I knew that I had little muscle atrophy and that gave me a

better start for rehabilitation. I didn't want to do surgery at all. But since

it was inevitable, I decided to go with the resurf. Plus, the surgeon up here

was distant, arrogant, and turned me off in a big way. It IS, after all, my

bone we're discussing! I found the folks at Dr. Gross's office to be warm,

funny, approachable, helpful, and very responsive to my needs and questions. I

had the surgery done 3 weeks ago yesterday. I'll tell you, that first week

post-op was pretty grim. But not because of anything Dr. Gross's office did.

It was reaction to the morphine and the fear of " what if I do something to screw

this up? " Post operative trauma. Some, I guess, have more than others. (I

have this imagination that can work overtime.) So, 3 weeks post-op, I'm doing

really well. Sleep is a bit of a problem. But I trust that'll work itself out.

I am listening to my own body for guidance on how much to push and when to lay

off. So far, so good. The incision is healing beautifully. I walking with

crutches but WITHOUT PAIN. And I'm looking to go back to my job on or about

March 15th. I can drive my car. I'm waiting, mostly, for the 6 weeks of 90

degree rule to pass. Anyway, buddy, it's a frightful position to be in. I

know. I would much rather have not had to have surgery. But I did. And I

decided I was worth the best that was available to me. And I did it. It was

the right thing to do. I hope this is helpful. Best to you, Joyce in KY, LHR,

Dr. Gross, 2/2/04

[Guest guest]

Hi, I just read your post on " idiopathic OA " in both hips. Wow! I just had OA

in my left hip and the pain was pretty awful. I'll leave it to others who know

more to talk about having both hips resurfed at the same time. But I wanted to

share with you that I, too, was totally horrified about such serious, structural

surgery. (I mean, once done there is no " going back. " ) However, once I learned

that I was bone-on-bone in my left hip, I knew that it wasn't going to get

better. The amount of Advil I was taking to control the pain was staggering --

and dangerous. I finally went to Vicodin and Arthrotech and that meant that I

had to modify my job duties to the point where I wasn't really able to do my

job. Oh, I could show up -- but because of the nature of the meds I was taking,

I couldn't do what I needed/wanted to do. So I went to see an orthopedic

surgeon here in my area. He recommended THR and scoffed at resurfacing. Whew!

I mean, the very idea of cutting off the femoral neck and plunging in that huge

stake left me really, really shaken. THEN I found this resurfacing group on

line. And found Dr Gross's name mentioned many times. I'm in KY, he's in S.C.

So I could get there. I had lost enough quality of life due to pain and the

restrictions it put on me. I knew it wasn't going to get better and that it

would get worse. I knew that I had little muscle atrophy and that gave me a

better start for rehabilitation. I didn't want to do surgery at all. But since

it was inevitable, I decided to go with the resurf. Plus, the surgeon up here

was distant, arrogant, and turned me off in a big way. It IS, after all, my

bone we're discussing! I found the folks at Dr. Gross's office to be warm,

funny, approachable, helpful, and very responsive to my needs and questions. I

had the surgery done 3 weeks ago yesterday. I'll tell you, that first week

post-op was pretty grim. But not because of anything Dr. Gross's office did.

It was reaction to the morphine and the fear of " what if I do something to screw

this up? " Post operative trauma. Some, I guess, have more than others. (I

have this imagination that can work overtime.) So, 3 weeks post-op, I'm doing

really well. Sleep is a bit of a problem. But I trust that'll work itself out.

I am listening to my own body for guidance on how much to push and when to lay

off. So far, so good. The incision is healing beautifully. I walking with

crutches but WITHOUT PAIN. And I'm looking to go back to my job on or about

March 15th. I can drive my car. I'm waiting, mostly, for the 6 weeks of 90

degree rule to pass. Anyway, buddy, it's a frightful position to be in. I

know. I would much rather have not had to have surgery. But I did. And I

decided I was worth the best that was available to me. And I did it. It was

the right thing to do. I hope this is helpful. Best to you, Joyce in KY, LHR,

Dr. Gross, 2/2/04

[Guest guest]

Hi, I just read your post on " idiopathic OA " in both hips. Wow! I just had OA

in my left hip and the pain was pretty awful. I'll leave it to others who know

more to talk about having both hips resurfed at the same time. But I wanted to

share with you that I, too, was totally horrified about such serious, structural

surgery. (I mean, once done there is no " going back. " ) However, once I learned

that I was bone-on-bone in my left hip, I knew that it wasn't going to get

better. The amount of Advil I was taking to control the pain was staggering --

and dangerous. I finally went to Vicodin and Arthrotech and that meant that I

had to modify my job duties to the point where I wasn't really able to do my

job. Oh, I could show up -- but because of the nature of the meds I was taking,

I couldn't do what I needed/wanted to do. So I went to see an orthopedic

surgeon here in my area. He recommended THR and scoffed at resurfacing. Whew!

I mean, the very idea of cutting off the femoral neck and plunging in that huge

stake left me really, really shaken. THEN I found this resurfacing group on

line. And found Dr Gross's name mentioned many times. I'm in KY, he's in S.C.

So I could get there. I had lost enough quality of life due to pain and the

restrictions it put on me. I knew it wasn't going to get better and that it

would get worse. I knew that I had little muscle atrophy and that gave me a

better start for rehabilitation. I didn't want to do surgery at all. But since

it was inevitable, I decided to go with the resurf. Plus, the surgeon up here

was distant, arrogant, and turned me off in a big way. It IS, after all, my

bone we're discussing! I found the folks at Dr. Gross's office to be warm,

funny, approachable, helpful, and very responsive to my needs and questions. I

had the surgery done 3 weeks ago yesterday. I'll tell you, that first week

post-op was pretty grim. But not because of anything Dr. Gross's office did.

It was reaction to the morphine and the fear of " what if I do something to screw

this up? " Post operative trauma. Some, I guess, have more than others. (I

have this imagination that can work overtime.) So, 3 weeks post-op, I'm doing

really well. Sleep is a bit of a problem. But I trust that'll work itself out.

I am listening to my own body for guidance on how much to push and when to lay

off. So far, so good. The incision is healing beautifully. I walking with

crutches but WITHOUT PAIN. And I'm looking to go back to my job on or about

March 15th. I can drive my car. I'm waiting, mostly, for the 6 weeks of 90

degree rule to pass. Anyway, buddy, it's a frightful position to be in. I

know. I would much rather have not had to have surgery. But I did. And I

decided I was worth the best that was available to me. And I did it. It was

the right thing to do. I hope this is helpful. Best to you, Joyce in KY, LHR,

Dr. Gross, 2/2/04

[Guest guest]

> Idiopathic Bilateral OA? What kind of diagnosis is this?

Basically the same one I have ;-)

It basically means that your OA isn't due to any identifiable

structural defect (like congenital dysplasia) or other condition

(like AVN). When somebody asks me what caused my OA, I just tell them

" I wore the damned things out " .

I

> understand it to mean that I am screwed and they can't tell me why.

> So now what?

>

> Thank you to those of you who post here. It has provided me with a

> wealth of information. I have been particularly interested in the

> responses to the person who is on the fence and been there for some

> time.

>

> I have seen three well-known and respected OS in Boston, one as

> recent as last week. I am 40 years old and have bilateral idiopathic

> OA. The doctor stated that my condition is very bad. My left hip is

> worse, however, both are bone on bone, the left hip is no longer

> round and I have bone spurs forming in both hips. He was very

> gracious with his time. He stated that my only real option was to

> have THR and that he could do it in three months and do it

> simultaneously. I inquired about resurfacing. He formerly did this

> procedure several years ago and abandoned it because it is not

> effective. I suspect it was with materials other than those used

> today.

That's pretty obvious from his later comments.

> Additionally, his other concerns may be summarized as

> follows: 1) bone preservation was an invalid argument because you

> take the same amount on the pelvic side and you are worse off when

> inevitably go to THR,

Absolutely false. This was true for the metal/poly resurfacings that

were tried in the early 1980s. They had to ream out more acetabular

bone because the acetabular cups were so big. Modern resurfacing uses

an all-metal acetabular cup which is identical to the one used for

" big femoral head " metal-on-metal THRs. Very little acetabular bone is

removed. What they *don't* have to do with a resurfacing is:

1) cut the head off your femur

2) drill out the bone canal in your femur

3) pound a metal spike down the drilled-out canal

> and 2) he has concerns about the metal ions

> issue long term.

Nobody knows about this. Metal-on-metal THRs have been done for years

in Europe, and there hasn't been a single incident of metallosis or of

cancer attibutable to the implants. That's reassuring, but it's

anecdotal and the sample size is too small to draw any statistically

valid conclusions.

>Other than that he really wasn't interested in

> discussing resurfacing as a viable alternative to THR.

>

> I am in a quandary and not sure how to proceed. I read your stories

> and I feel very badly for those of you in such pain. I have lived in

> pain for about four years, however, it really isn't that bad most of

> the time. It is more of a chronic pain with very limited range of

> motion. I discontinued most running about six months ago in an

> attempt to preserve what I have. After the discouraging news last

> week I went out and ran ten miles and played hockey with my kids for

> three hours. I took a hand full of Advil and I was living in the

> same chronic pain as always. It doesn't feel right to be considering

> such a drastic operation given that I still do many active things and

> I can live with the pain.

You sound like me when I was first diagnosed. ;-)

Unfortunately, the " handful of Advil " approach can raise your blood

pressure, injure your kidneys (I can testify to both of these), and

accelerate the deterioration of the joint. When I was first diagnosed

2 years ago, I'd had hip/groin pain for several years. Of course, it

only *really* hurt after a long run or a prolonged karate class.

Biking over 20 miles was uncomfortable. I also had limited ROM when

squatting and it was occasionally difficult to deadlift. I figured I

could live with that. All the surgical options sounded really drastic

and, after all, resurfacing wasn't FDA approved (it still isn't,

although application has been made to the FDA for the Conserve Plus

device). I figured I'd just wait until the procedure was approved and

live on glucosamine in the meantime.

The shrinks call this " denial " .

Things just gradually got worse. I gave up running altogether because

I couldn't step over a curb the day after even a short run. The

stabbing knife-like groin/hip/thigh pain wasn't much fun, either.

I gave up bike riding, because:

1) I really didn't have the ROM to pedal the damned thing, and

2) I couldn't get on it. I hadn't been able to swing my leg over it

for years, so I just dropped it on the side, straddled it and lifted

it up. Now I couldn't either straddle it or reach it when it was on

the ground.

I realized that the reason why I was spending so much time correcting

my karate students' form was because they were all mimicing their

crippled teacher. That was okay. I could live with it. I started

taking the elevator instead of the stairs. I could live with that,

too. My dog was getting older, so long hikes in the mountains were a

less frequent occurrence. I could even live with that.

Finally, in November things got *much* worse.

I needed to get a wheelchair ride in the Miami airport while on a

long-awaited vacation trip to the Caribbean. Once I got there, I

really couldn't do anything. I spent 7 days below decks on a sailboat

instead of actively crewing. When my crewmates went hiking up a

volcano, I stayed at the hotel.

On good days, I was still just in nagging, chronic pain. On bad days,

I couldn't make it to the end of the block. In December, I got new

X-rays and started sending them out. My case is now complicated by the

kidney damage from self-administered " handful of Advil " treatment

(this means that metal ions will be more of a problem for me than most).

I'm getting a bilateral resurf on 4/20 from Amstutz...if I don't

hobble out to the garage, grab the power tools, and do it to myself

before then. Looking back, I realize that I've pretty much wasted the

last few years.

> My main issue is that I have very limited

> range of motion that is beginning to hinder most athletic

> activities. As a former athlete I had five reconstructive knee

> operations. It was an easy decision; I had broken bones and torn

> ligaments and access to one of the best OS in the world to fix me.

> After conducting my research it seems so intuitive to look into

> resurfacing. I want to remain very active and resurfacing seems the

> only way to accomplish this objective.

Yup.

>

> As I see it I have two options: 1) continue my active lifestyle and

> live in tolerable pain for a few years and get the THR on both hips

> after I really wear them out; or 2) take a chance with resurfacing.

> I enjoy hearing the BHR resurfacing success stories, however, I would

> also like to hear from people that did not have such great results.

> So this leads me to a few questions, and again I apologize for the

> delay in getting here.

>

> 1. What is the process for setting up an appointment with any of

> the resurfacing specialists? I requested my x-rays from my OS. I

> sent an email to JRI explaining my condition and they did not

> respond.

That's pretty unusual. Everytime I've sent a question to JRI, I've

gotten a response within a couple of working days. I'd call, ask for

Chuck , and leave a voicemail if he isn't there.

>Do I send them my x-rays and follow up with a call?

> 2. How long is waiting too long to be considered a candidate for

> resurfacing?

It depends on the surgeon. They need a certain amount of good bone to

attach the femoral component, so don't let it go to long. De Smet is

pretty famous hereabouts for taking cases that others have turned down

and succeeding, so don't despair if the US docs turn you down.

However, eventually you'll destroy so much femoral bone that

resurfacing just won't be an option.

> 3. Given my limited range of motion has anyone experienced doing

> anything that pushes you reluctantly past the end point? Is there a

> possibility for more damage to the joint when you exceed your range

> of motion?

You need to ask an orthopedist about this.

> 4. I understand there is limited data available, however, do the

> doctors commit to any estimates on how long this will last provided

> the operation is successful? It was suggested to me that this is a

> temporary fix if at al

Okay. The laboratory hip simulator test data suggest that a MoM

resurfacing wears 20 to 100 *times* more slowly than a conventional

metal on polyethylene THR. Short and medium term clinical data show

resurfacing to be at least as good as THR, and considerably better in

young, active patients (see the Swedish Hip Register study for a

really enlightening graph of implant " survivorship " in patients under

55). The dislocation rate for resurfacing is somewhere between 10 and

100 times lower than for a conventional THR. None of that constitutes

a " guarantee " that it will work for you. Think about this, though: a

resurfacing can always be revised to a THR, but once you've done the

THR you can never go back.

You need to discuss the pros and cons with a doc who actually *does*

resurfacing and has studied your case.

> 5. When I was competing I was 165 pounds, however, I am down to

> 145 pounds from running and less weight training. Will this

> disqualify me as a candidate for this procedure?

> 6. Is there anything in the near future either from a procedural

> or technological perspective that would suggest that I should wait?

Biological therapies (cartilage regrowth) are at least a decade away.

Ceramic or diamond-coated resurfacing implants are probably several

years away. That's all wonderful, but you need to do something *now*.

How many years are you willing to sacrifice to pain?

> 7. How long does it take to get a date for surgery and to get

> through the process?

Most of the docs seem to have about an 8 week waiting list. Some more,

some less.

> 8. I am inclined to get them both done at the same time. What

> is the experience of those unfortunate enough to have this curse in

> both hips? Are the doctors willing and able do both during the same

> operation?

Yes. I'm having both of mine done on 4/20. Dr. Steve Vince had a

bilateral in Belgium a few weeks ago. He posts here pretty frequently.

> 9. What is idiopathic? Is it true that they really can't

> provide me with a reasonable explanation for this?

Well, that's basically what " idiopathic " means. As Webster's puts it:

" not in consequence of some other disease or injury " .

>I am trying to

> write it off as too many marathons, too many crashes and too many

> years of athletics.

Probably. Or as I put it, " I just wore the suckers out " .

> I have a hard time with the plausibility of this

> hypothesis because I have had several knee operations and never have

> any pain in my knees.

And after your hip operation, you probably won't have any pain

*there*, either. ;-)

>

> Thank you for your responses and support. I wish the best possible

> outcome for each of you.

Same to you!

Steve (*FINALLY* scheduled for a bilateral C+!!!!!)

[Guest guest]

> Idiopathic Bilateral OA? What kind of diagnosis is this?

Basically the same one I have ;-)

It basically means that your OA isn't due to any identifiable

structural defect (like congenital dysplasia) or other condition

(like AVN). When somebody asks me what caused my OA, I just tell them

" I wore the damned things out " .

I

> understand it to mean that I am screwed and they can't tell me why.

> So now what?

>

> Thank you to those of you who post here. It has provided me with a

> wealth of information. I have been particularly interested in the

> responses to the person who is on the fence and been there for some

> time.

>

> I have seen three well-known and respected OS in Boston, one as

> recent as last week. I am 40 years old and have bilateral idiopathic

> OA. The doctor stated that my condition is very bad. My left hip is

> worse, however, both are bone on bone, the left hip is no longer

> round and I have bone spurs forming in both hips. He was very

> gracious with his time. He stated that my only real option was to

> have THR and that he could do it in three months and do it

> simultaneously. I inquired about resurfacing. He formerly did this

> procedure several years ago and abandoned it because it is not

> effective. I suspect it was with materials other than those used

> today.

That's pretty obvious from his later comments.

> Additionally, his other concerns may be summarized as

> follows: 1) bone preservation was an invalid argument because you

> take the same amount on the pelvic side and you are worse off when

> inevitably go to THR,

Absolutely false. This was true for the metal/poly resurfacings that

were tried in the early 1980s. They had to ream out more acetabular

bone because the acetabular cups were so big. Modern resurfacing uses

an all-metal acetabular cup which is identical to the one used for

" big femoral head " metal-on-metal THRs. Very little acetabular bone is

removed. What they *don't* have to do with a resurfacing is:

1) cut the head off your femur

2) drill out the bone canal in your femur

3) pound a metal spike down the drilled-out canal

> and 2) he has concerns about the metal ions

> issue long term.

Nobody knows about this. Metal-on-metal THRs have been done for years

in Europe, and there hasn't been a single incident of metallosis or of

cancer attibutable to the implants. That's reassuring, but it's

anecdotal and the sample size is too small to draw any statistically

valid conclusions.

>Other than that he really wasn't interested in

> discussing resurfacing as a viable alternative to THR.

>

> I am in a quandary and not sure how to proceed. I read your stories

> and I feel very badly for those of you in such pain. I have lived in

> pain for about four years, however, it really isn't that bad most of

> the time. It is more of a chronic pain with very limited range of

> motion. I discontinued most running about six months ago in an

> attempt to preserve what I have. After the discouraging news last

> week I went out and ran ten miles and played hockey with my kids for

> three hours. I took a hand full of Advil and I was living in the

> same chronic pain as always. It doesn't feel right to be considering

> such a drastic operation given that I still do many active things and

> I can live with the pain.

You sound like me when I was first diagnosed. ;-)

Unfortunately, the " handful of Advil " approach can raise your blood

pressure, injure your kidneys (I can testify to both of these), and

accelerate the deterioration of the joint. When I was first diagnosed

2 years ago, I'd had hip/groin pain for several years. Of course, it

only *really* hurt after a long run or a prolonged karate class.

Biking over 20 miles was uncomfortable. I also had limited ROM when

squatting and it was occasionally difficult to deadlift. I figured I

could live with that. All the surgical options sounded really drastic

and, after all, resurfacing wasn't FDA approved (it still isn't,

although application has been made to the FDA for the Conserve Plus

device). I figured I'd just wait until the procedure was approved and

live on glucosamine in the meantime.

The shrinks call this " denial " .

Things just gradually got worse. I gave up running altogether because

I couldn't step over a curb the day after even a short run. The

stabbing knife-like groin/hip/thigh pain wasn't much fun, either.

I gave up bike riding, because:

1) I really didn't have the ROM to pedal the damned thing, and

2) I couldn't get on it. I hadn't been able to swing my leg over it

for years, so I just dropped it on the side, straddled it and lifted

it up. Now I couldn't either straddle it or reach it when it was on

the ground.

I realized that the reason why I was spending so much time correcting

my karate students' form was because they were all mimicing their

crippled teacher. That was okay. I could live with it. I started

taking the elevator instead of the stairs. I could live with that,

too. My dog was getting older, so long hikes in the mountains were a

less frequent occurrence. I could even live with that.

Finally, in November things got *much* worse.

I needed to get a wheelchair ride in the Miami airport while on a

long-awaited vacation trip to the Caribbean. Once I got there, I

really couldn't do anything. I spent 7 days below decks on a sailboat

instead of actively crewing. When my crewmates went hiking up a

volcano, I stayed at the hotel.

On good days, I was still just in nagging, chronic pain. On bad days,

I couldn't make it to the end of the block. In December, I got new

X-rays and started sending them out. My case is now complicated by the

kidney damage from self-administered " handful of Advil " treatment

(this means that metal ions will be more of a problem for me than most).

I'm getting a bilateral resurf on 4/20 from Amstutz...if I don't

hobble out to the garage, grab the power tools, and do it to myself

before then. Looking back, I realize that I've pretty much wasted the

last few years.

> My main issue is that I have very limited

> range of motion that is beginning to hinder most athletic

> activities. As a former athlete I had five reconstructive knee

> operations. It was an easy decision; I had broken bones and torn

> ligaments and access to one of the best OS in the world to fix me.

> After conducting my research it seems so intuitive to look into

> resurfacing. I want to remain very active and resurfacing seems the

> only way to accomplish this objective.

Yup.

>

> As I see it I have two options: 1) continue my active lifestyle and

> live in tolerable pain for a few years and get the THR on both hips

> after I really wear them out; or 2) take a chance with resurfacing.

> I enjoy hearing the BHR resurfacing success stories, however, I would

> also like to hear from people that did not have such great results.

> So this leads me to a few questions, and again I apologize for the

> delay in getting here.

>

> 1. What is the process for setting up an appointment with any of

> the resurfacing specialists? I requested my x-rays from my OS. I

> sent an email to JRI explaining my condition and they did not

> respond.

That's pretty unusual. Everytime I've sent a question to JRI, I've

gotten a response within a couple of working days. I'd call, ask for

Chuck , and leave a voicemail if he isn't there.

>Do I send them my x-rays and follow up with a call?

> 2. How long is waiting too long to be considered a candidate for

> resurfacing?

It depends on the surgeon. They need a certain amount of good bone to

attach the femoral component, so don't let it go to long. De Smet is

pretty famous hereabouts for taking cases that others have turned down

and succeeding, so don't despair if the US docs turn you down.

However, eventually you'll destroy so much femoral bone that

resurfacing just won't be an option.

> 3. Given my limited range of motion has anyone experienced doing

> anything that pushes you reluctantly past the end point? Is there a

> possibility for more damage to the joint when you exceed your range

> of motion?

You need to ask an orthopedist about this.

> 4. I understand there is limited data available, however, do the

> doctors commit to any estimates on how long this will last provided

> the operation is successful? It was suggested to me that this is a

> temporary fix if at al

Okay. The laboratory hip simulator test data suggest that a MoM

resurfacing wears 20 to 100 *times* more slowly than a conventional

metal on polyethylene THR. Short and medium term clinical data show

resurfacing to be at least as good as THR, and considerably better in

young, active patients (see the Swedish Hip Register study for a

really enlightening graph of implant " survivorship " in patients under

55). The dislocation rate for resurfacing is somewhere between 10 and

100 times lower than for a conventional THR. None of that constitutes

a " guarantee " that it will work for you. Think about this, though: a

resurfacing can always be revised to a THR, but once you've done the

THR you can never go back.

You need to discuss the pros and cons with a doc who actually *does*

resurfacing and has studied your case.

> 5. When I was competing I was 165 pounds, however, I am down to

> 145 pounds from running and less weight training. Will this

> disqualify me as a candidate for this procedure?

> 6. Is there anything in the near future either from a procedural

> or technological perspective that would suggest that I should wait?

Biological therapies (cartilage regrowth) are at least a decade away.

Ceramic or diamond-coated resurfacing implants are probably several

years away. That's all wonderful, but you need to do something *now*.

How many years are you willing to sacrifice to pain?

> 7. How long does it take to get a date for surgery and to get

> through the process?

Most of the docs seem to have about an 8 week waiting list. Some more,

some less.

> 8. I am inclined to get them both done at the same time. What

> is the experience of those unfortunate enough to have this curse in

> both hips? Are the doctors willing and able do both during the same

> operation?

Yes. I'm having both of mine done on 4/20. Dr. Steve Vince had a

bilateral in Belgium a few weeks ago. He posts here pretty frequently.

> 9. What is idiopathic? Is it true that they really can't

> provide me with a reasonable explanation for this?

Well, that's basically what " idiopathic " means. As Webster's puts it:

" not in consequence of some other disease or injury " .

>I am trying to

> write it off as too many marathons, too many crashes and too many

> years of athletics.

Probably. Or as I put it, " I just wore the suckers out " .

> I have a hard time with the plausibility of this

> hypothesis because I have had several knee operations and never have

> any pain in my knees.

And after your hip operation, you probably won't have any pain

*there*, either. ;-)

>

> Thank you for your responses and support. I wish the best possible

> outcome for each of you.

Same to you!

Steve (*FINALLY* scheduled for a bilateral C+!!!!!)

[Guest guest]

> Idiopathic Bilateral OA? What kind of diagnosis is this?

Basically the same one I have ;-)

It basically means that your OA isn't due to any identifiable

structural defect (like congenital dysplasia) or other condition

(like AVN). When somebody asks me what caused my OA, I just tell them

" I wore the damned things out " .

I

> understand it to mean that I am screwed and they can't tell me why.

> So now what?

>

> Thank you to those of you who post here. It has provided me with a

> wealth of information. I have been particularly interested in the

> responses to the person who is on the fence and been there for some

> time.

>

> I have seen three well-known and respected OS in Boston, one as

> recent as last week. I am 40 years old and have bilateral idiopathic

> OA. The doctor stated that my condition is very bad. My left hip is

> worse, however, both are bone on bone, the left hip is no longer

> round and I have bone spurs forming in both hips. He was very

> gracious with his time. He stated that my only real option was to

> have THR and that he could do it in three months and do it

> simultaneously. I inquired about resurfacing. He formerly did this

> procedure several years ago and abandoned it because it is not

> effective. I suspect it was with materials other than those used

> today.

That's pretty obvious from his later comments.

> Additionally, his other concerns may be summarized as

> follows: 1) bone preservation was an invalid argument because you

> take the same amount on the pelvic side and you are worse off when

> inevitably go to THR,

Absolutely false. This was true for the metal/poly resurfacings that

were tried in the early 1980s. They had to ream out more acetabular

bone because the acetabular cups were so big. Modern resurfacing uses

an all-metal acetabular cup which is identical to the one used for

" big femoral head " metal-on-metal THRs. Very little acetabular bone is

removed. What they *don't* have to do with a resurfacing is:

1) cut the head off your femur

2) drill out the bone canal in your femur

3) pound a metal spike down the drilled-out canal

> and 2) he has concerns about the metal ions

> issue long term.

Nobody knows about this. Metal-on-metal THRs have been done for years

in Europe, and there hasn't been a single incident of metallosis or of

cancer attibutable to the implants. That's reassuring, but it's

anecdotal and the sample size is too small to draw any statistically

valid conclusions.

>Other than that he really wasn't interested in

> discussing resurfacing as a viable alternative to THR.

>

> I am in a quandary and not sure how to proceed. I read your stories

> and I feel very badly for those of you in such pain. I have lived in

> pain for about four years, however, it really isn't that bad most of

> the time. It is more of a chronic pain with very limited range of

> motion. I discontinued most running about six months ago in an

> attempt to preserve what I have. After the discouraging news last

> week I went out and ran ten miles and played hockey with my kids for

> three hours. I took a hand full of Advil and I was living in the

> same chronic pain as always. It doesn't feel right to be considering

> such a drastic operation given that I still do many active things and

> I can live with the pain.

You sound like me when I was first diagnosed. ;-)

Unfortunately, the " handful of Advil " approach can raise your blood

pressure, injure your kidneys (I can testify to both of these), and

accelerate the deterioration of the joint. When I was first diagnosed

2 years ago, I'd had hip/groin pain for several years. Of course, it

only *really* hurt after a long run or a prolonged karate class.

Biking over 20 miles was uncomfortable. I also had limited ROM when

squatting and it was occasionally difficult to deadlift. I figured I

could live with that. All the surgical options sounded really drastic

and, after all, resurfacing wasn't FDA approved (it still isn't,

although application has been made to the FDA for the Conserve Plus

device). I figured I'd just wait until the procedure was approved and

live on glucosamine in the meantime.

The shrinks call this " denial " .

Things just gradually got worse. I gave up running altogether because

I couldn't step over a curb the day after even a short run. The

stabbing knife-like groin/hip/thigh pain wasn't much fun, either.

I gave up bike riding, because:

1) I really didn't have the ROM to pedal the damned thing, and

2) I couldn't get on it. I hadn't been able to swing my leg over it

for years, so I just dropped it on the side, straddled it and lifted

it up. Now I couldn't either straddle it or reach it when it was on

the ground.

I realized that the reason why I was spending so much time correcting

my karate students' form was because they were all mimicing their

crippled teacher. That was okay. I could live with it. I started

taking the elevator instead of the stairs. I could live with that,

too. My dog was getting older, so long hikes in the mountains were a

less frequent occurrence. I could even live with that.

Finally, in November things got *much* worse.

I needed to get a wheelchair ride in the Miami airport while on a

long-awaited vacation trip to the Caribbean. Once I got there, I

really couldn't do anything. I spent 7 days below decks on a sailboat

instead of actively crewing. When my crewmates went hiking up a

volcano, I stayed at the hotel.

On good days, I was still just in nagging, chronic pain. On bad days,

I couldn't make it to the end of the block. In December, I got new

X-rays and started sending them out. My case is now complicated by the

kidney damage from self-administered " handful of Advil " treatment

(this means that metal ions will be more of a problem for me than most).

I'm getting a bilateral resurf on 4/20 from Amstutz...if I don't

hobble out to the garage, grab the power tools, and do it to myself

before then. Looking back, I realize that I've pretty much wasted the

last few years.

> My main issue is that I have very limited

> range of motion that is beginning to hinder most athletic

> activities. As a former athlete I had five reconstructive knee

> operations. It was an easy decision; I had broken bones and torn

> ligaments and access to one of the best OS in the world to fix me.

> After conducting my research it seems so intuitive to look into

> resurfacing. I want to remain very active and resurfacing seems the

> only way to accomplish this objective.

Yup.

>

> As I see it I have two options: 1) continue my active lifestyle and

> live in tolerable pain for a few years and get the THR on both hips

> after I really wear them out; or 2) take a chance with resurfacing.

> I enjoy hearing the BHR resurfacing success stories, however, I would

> also like to hear from people that did not have such great results.

> So this leads me to a few questions, and again I apologize for the

> delay in getting here.

>

> 1. What is the process for setting up an appointment with any of

> the resurfacing specialists? I requested my x-rays from my OS. I

> sent an email to JRI explaining my condition and they did not

> respond.

That's pretty unusual. Everytime I've sent a question to JRI, I've

gotten a response within a couple of working days. I'd call, ask for

Chuck , and leave a voicemail if he isn't there.

>Do I send them my x-rays and follow up with a call?

> 2. How long is waiting too long to be considered a candidate for

> resurfacing?

It depends on the surgeon. They need a certain amount of good bone to

attach the femoral component, so don't let it go to long. De Smet is

pretty famous hereabouts for taking cases that others have turned down

and succeeding, so don't despair if the US docs turn you down.

However, eventually you'll destroy so much femoral bone that

resurfacing just won't be an option.

> 3. Given my limited range of motion has anyone experienced doing

> anything that pushes you reluctantly past the end point? Is there a

> possibility for more damage to the joint when you exceed your range

> of motion?

You need to ask an orthopedist about this.

> 4. I understand there is limited data available, however, do the

> doctors commit to any estimates on how long this will last provided

> the operation is successful? It was suggested to me that this is a

> temporary fix if at al

Okay. The laboratory hip simulator test data suggest that a MoM

resurfacing wears 20 to 100 *times* more slowly than a conventional

metal on polyethylene THR. Short and medium term clinical data show

resurfacing to be at least as good as THR, and considerably better in

young, active patients (see the Swedish Hip Register study for a

really enlightening graph of implant " survivorship " in patients under

55). The dislocation rate for resurfacing is somewhere between 10 and

100 times lower than for a conventional THR. None of that constitutes

a " guarantee " that it will work for you. Think about this, though: a

resurfacing can always be revised to a THR, but once you've done the

THR you can never go back.

You need to discuss the pros and cons with a doc who actually *does*

resurfacing and has studied your case.

> 5. When I was competing I was 165 pounds, however, I am down to

> 145 pounds from running and less weight training. Will this

> disqualify me as a candidate for this procedure?

> 6. Is there anything in the near future either from a procedural

> or technological perspective that would suggest that I should wait?

Biological therapies (cartilage regrowth) are at least a decade away.

Ceramic or diamond-coated resurfacing implants are probably several

years away. That's all wonderful, but you need to do something *now*.

How many years are you willing to sacrifice to pain?

> 7. How long does it take to get a date for surgery and to get

> through the process?

Most of the docs seem to have about an 8 week waiting list. Some more,

some less.

> 8. I am inclined to get them both done at the same time. What

> is the experience of those unfortunate enough to have this curse in

> both hips? Are the doctors willing and able do both during the same

> operation?

Yes. I'm having both of mine done on 4/20. Dr. Steve Vince had a

bilateral in Belgium a few weeks ago. He posts here pretty frequently.

> 9. What is idiopathic? Is it true that they really can't

> provide me with a reasonable explanation for this?

Well, that's basically what " idiopathic " means. As Webster's puts it:

" not in consequence of some other disease or injury " .

>I am trying to

> write it off as too many marathons, too many crashes and too many

> years of athletics.

Probably. Or as I put it, " I just wore the suckers out " .

> I have a hard time with the plausibility of this

> hypothesis because I have had several knee operations and never have

> any pain in my knees.

And after your hip operation, you probably won't have any pain

*there*, either. ;-)

>

> Thank you for your responses and support. I wish the best possible

> outcome for each of you.

Same to you!

Steve (*FINALLY* scheduled for a bilateral C+!!!!!)

[Guest guest]

Dear Aleks,

You have osteoarthritis or OA or degenerative joint disease in both

hips, and it's progressively getting worse. Whatever the cause, once

the process begins it winds along to it's inevitible end. Why you?

Same reason as me or maybe just bad luck, but at this point " why "

doesn't matter much. All you can really do is resolve the problem and

move forward. I'll try and address your questions from my limited

experience but you're the one stuck with the decision.

> Idiopathic Bilateral OA? What kind of diagnosis is this? I

> understand it to mean that I am screwed and they can't tell me why.

> So now what?

>

> Thank you to those of you who post here. It has provided me with a

> wealth of information. I have been particularly interested in the

> responses to the person who is on the fence and been there for some

> time.

>

> I have seen three well-known and respected OS in Boston, one as

> recent as last week. I am 40 years old and have bilateral idiopathic

> OA. The doctor stated that my condition is very bad. My left hip is

> worse, however, both are bone on bone, the left hip is no longer

> round and I have bone spurs forming in both hips. He was very

> gracious with his time. He stated that my only real option was to

> have THR and that he could do it in three months and do it

> simultaneously. I inquired about resurfacing. He formerly did this

> procedure several years ago and abandoned it because it is not

> effective. I suspect it was with materials other than those used

> today. Additionally, his other concerns may be summarized as

> follows: 1) bone preservation was an invalid argument because you

> take the same amount on the pelvic side and you are worse off when

> inevitably go to THR, and 2) he has concerns about the metal ions

> issue long term. Other than that he really wasn't interested in

> discussing resurfacing as a viable alternative to THR.

>

> I am in a quandary and not sure how to proceed. I read your stories

> and I feel very badly for those of you in such pain. I have lived in

> pain for about four years, however, it really isn't that bad most of

> the time. It is more of a chronic pain with very limited range of

> motion. I discontinued most running about six months ago in an

> attempt to preserve what I have. After the discouraging news last

> week I went out and ran ten miles and played hockey with my kids for

> three hours. I took a hand full of Advil and I was living in the

> same chronic pain as always. It doesn't feel right to be considering

> such a drastic operation given that I still do many active things and

> I can live with the pain. My main issue is that I have very limited

> range of motion that is beginning to hinder most athletic

> activities. As a former athlete I had five reconstructive knee

> operations. It was an easy decision; I had broken bones and torn

> ligaments and access to one of the best OS in the world to fix me.

> After conducting my research it seems so intuitive to look into

> resurfacing. I want to remain very active and resurfacing seems the

> only way to accomplish this objective.

>

> As I see it I have two options: 1) continue my active lifestyle and

> live in tolerable pain for a few years and get the THR on both hips

> after I really wear them out; or 2) take a chance with resurfacing.

> I enjoy hearing the BHR resurfacing success stories, however, I would

> also like to hear from people that did not have such great results.

> So this leads me to a few questions, and again I apologize for the

> delay in getting here.

>

> 1. What is the process for setting up an appointment with any of

> the resurfacing specialists? I requested my x-rays from my OS. I

> sent an email to JRI explaining my condition and they did not

> respond. Do I send them my x-rays and follow up with a call?

Here in the US I found a lack of immediate response to be pretty

typical. I received prompt replies from Dr Chan Ghana in UK and Dr

Koen De Smet in Belgium. I went to Belgium because Koen had done

bilateral hips before, mine now included. I'm 8 weeks out and was back

in the gym at week 5. I'm now shuffling along after my 4 1/2 year old

with reckless abandon. The deep pain is gone and my only limitation is

the slow pace of regaining muscle strength.

> 2. How long is waiting too long to be considered a candidate for

> resurfacing?

When you're bone-on-bone the joint lining is completely shot and the

bones wear against each other and deform very rapidly. Cysts may

develop in the affected surfaces and the joint then becomes harder to

salvage. I was within maybe a week or so of not being able to have my

right hip resurfaced. You really need to decide to do something

definitive now or not. For me the decision was easy. I wanted to chase

my wife and son around again, run, play soccer, etc and I wanted to do

it... " now! " .

> 3. Given my limited range of motion has anyone experienced doing

> anything that pushes you reluctantly past the end point? Is there a

> possibility for more damage to the joint when you exceed your range

> of motion?

As the cartilage wears away the joint narrows and movement becomes

more and more restricted. The bone surfaces become deformed and with

weight bearing the damage becomes progressively worse. Pain eventually

overwhelms most. Eventually, the meds aren't enough. Handfulls of

anything are too much.

> 4. I understand there is limited data available, however, do the

> doctors commit to any estimates on how long this will last provided

> the operation is successful? It was suggested to me that this is a

> temporary fix if at all.

I was given the same line of BS by a pair of Harvard trained OS

geniuses. The prosthetics in current use have been around for years in

Europe. The BHR was introduced in UK I think in 1995. The early wear

data for the current crop of large diameter metal-on-metal prosthetics

suggests they should last almost indefinitely.

> 5. When I was competing I was 165 pounds, however, I am down to

> 145 pounds from running and less weight training. Will this

> disqualify me as a candidate for this procedure?

Less weight initially is better. When your joints are renewed you'll

rebuild muscle and your lost weight will return.

> 6. Is there anything in the near future either from a procedural

> or technological perspective that would suggest that I should wait?

Not that I know of. Even so, the time for remedy sounds like now for

the hips you're describing.

> 7. How long does it take to get a date for surgery and to get

> through the process?

It took me about 2 months. My recovery went very fast and I was back

home in only 2 weeks.

> 8. I am inclined to get them both done at the same time. What

> is the experience of those unfortunate enough to have this curse in

> both hips? Are the doctors willing and able do both during the same

> operation?

De Smet will do both and I suspect would want to do you asap rather

than later. I understand Dr Amstutz at JRI has done bilats and that Dr

Gross in SC has done them as close as 2 days apart. I'm extremely

biased and I have no real experience with anyone other than De Smet

but others do and have reported good results. Still, De Smet's done

over 1000 resurfs, he's extremely fast and he's extraordinarily good!

> 9. What is idiopathic? Is it true that they really can't

> provide me with a reasonable explanation for this? I am trying to

> write it off as too many marathons, too many crashes and too many

> years of athletics. I have a hard time with the plausibility of this

> hypothesis because I have had several knee operations and never have

> any pain in my knees.

>Idiopathic pretty much does mean that you're screwed and they can't

tell you why although your history of repetitive trauma makes perfect

sense to me.

> Thank you for your responses and support. I wish the best possible

> outcome for each of you.

>

> Aleks