Mom needs hip revision: how can I fight on her behalf?

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BobStrauss
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Mom needs hip revision: how can I fight on her behalf?

Post by BobStrauss » Sun Sep 23, 2018 7:55 pm

I’ve got a 74 year old mother who’s been struggling with her hips for the last five years, but aside from that she is in excellent health.

She’s had a hip replacement on one side that’s been perfect - trouble free. However, the other hip has been operated on three times - all failing within a year or less. Some of the failures are likely due to a bump, and one was a mild fall, but the last one seemed it give way by itself. It’s been the same surgeon each time, who is very well-reputed. He’s recommended a sole insert to help her given her current status (uneven leg length now), but admits that he doesn’t feel comfortable taking on another revision himself. Indicates that he’d call in other surgeons for assistance, or recommend her to other clinics (Cleveland and Mayo).

So he referred her to Mayo and sent up some basic information, but the letter she received back indicated that they were “very busy” and would get back in touch - no timeline indicated. Sounds like she’s getting blown off to me.

She can barely move without a walker, and is only going to be in pain until it’s fixed, but needs a top surgeon in order to Get things right. How do you go about getting the right help, finding the right doc, pushing for an actual appointment date, etc? This is all new to me, but at 74 I know she needs to get this fixed ASAP in order to truly have quality of life. Any advice Would be highly appreciated.

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BolderBoy
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Re: Mom needs hip revision: how can I fight on her behalf?

Post by BolderBoy » Sun Sep 23, 2018 8:02 pm

BobStrauss wrote:
Sun Sep 23, 2018 7:55 pm
She can barely move without a walker, and is only going to be in pain until it’s fixed, but needs a top surgeon in order to Get things right. How do you go about getting the right help, finding the right doc, pushing for an actual appointment date, etc? This is all new to me, but at 74 I know she needs to get this fixed ASAP in order to truly have quality of life. Any advice Would be highly appreciated.
Two revisions already? Gonna be tough.
How far is she willing to travel?
"Never underestimate one's capacity to overestimate one's abilities" - The Dunning-Kruger Effect

jhwkr542
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Re: Mom needs hip revision: how can I fight on her behalf?

Post by jhwkr542 » Sun Sep 23, 2018 8:03 pm

To me, that doesn't sound like getting blown off. If anything, it may be more of a standard letter to say it could be a while. Mayo wouldn't just dismiss her like that. I'd recommend two possibilities: either call Mayo and try to get a better timeline or see if your original surgeon can make a referral to somewhere else. Or both. Sometimes the squeaky wheel gets the oil.

Unfortunately, sometimes these arthroplasties don't work out as well as hoped. Hopefully, she can get some relief with the proposed surgery.

Balefire
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Re: Mom needs hip revision: how can I fight on her behalf?

Post by Balefire » Sun Sep 23, 2018 8:06 pm

Each state has one or more academic referral center. I would find out which one has the most renowned surgeon for your problem.

Mayo doesn't always have the best surgeons for every problem LoL

123
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Re: Mom needs hip revision: how can I fight on her behalf?

Post by 123 » Sun Sep 23, 2018 8:09 pm

Depending on where she lives it might be a good option to explore evaluation and treatment at a nearby medical school, often closely associated with a large hospital. Her physician may be able to provide guidance. While major clinics can provide a 1 stop solution for a possible remedy often times a medical school clinic may develop a treatment that is not driven by insurance company billing codes.
The closest helping hand is at the end of your own arm.

drzzzzz
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Re: Mom needs hip revision: how can I fight on her behalf?

Post by drzzzzz » Sun Sep 23, 2018 8:10 pm

You don't mention where your mother is located and how far she is willing to travel, but I would suggest that most of the major academic centers are likely to have talented enough physicians who can give you an opinion of what they think is going on and a recommendation for what they might suggest. I would schedule appointments at other places, if geographically possible, and check the government's website about hospitals and orthopedic surgeons who perform hip surgery. Many of the orthopedic surgeon practices are specialized enough these days that only a limited number of surgeons at the academic institutions are doing hips, others knees, others ankle, or upper extremity, so finding the "hip" guru at a particular place shouldn't be too difficult.

Rwsawbones
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Re: Mom needs hip revision: how can I fight on her behalf?

Post by Rwsawbones » Sun Sep 23, 2018 8:13 pm

I suggest telling the referring orthopedic surgeon about the run around. A call from the referring surgeon can make the difference. There are 2 customers; your mother and the referring surgeon. Both need to be happy with the treatment if the consultant wants future referrals

BobStrauss
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Re: Mom needs hip revision: how can I fight on her behalf?

Post by BobStrauss » Sun Sep 23, 2018 8:13 pm

She’s willing to travel anywhere in the US to get it done - perhaps even internationally but I doubt that’s truly necessary. She lives near the KU med center and is seeing probably the best reputed doctor for hip surgery in the KC area.

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FrugalInvestor
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Re: Mom needs hip revision: how can I fight on her behalf?

Post by FrugalInvestor » Sun Sep 23, 2018 8:20 pm

I'm assuming that you mom in on Medicare. If so, this may explain Mayo's response....

http://www.startribune.com/mayo-to-pick ... 416185134/

From article:
Mayo Clinic’s chief executive made a startling announcement in a recent speech to employees: The Rochester-based health system will give preference to patients with private insurance over those with lower-paying Medicaid or Medicare coverage, if they seek care at the same time and have comparable conditions.
It goes on to say.....
Mayo will always take patients, regardless of payer source, when it has medical expertise that they can’t find elsewhere, said Dr. John Noseworthy, Mayo’s CEO. But when two patients are referred with equivalent conditions, he said the health system should “prioritize” those with private insurance.
You could possibly make the case that another well qualified surgeon has tried and failed and then referred your mom and ask Mayo to reconsider. Perhaps her current surgeon would be willing to contact the department with details.

Good luck!

Edit P.S. The entire article is very interesting and enlightening with regard to the larger issues surrounding medical care and costs in our country.
IGNORE the noise! | Our life is frittered away by detail... simplify, simplify. - Henry David Thoreau

startwithtruth
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Re: Mom needs hip revision: how can I fight on her behalf?

Post by startwithtruth » Sun Sep 23, 2018 8:32 pm

Regarding the Mayo Clinic - my husband was having trouble finding anyone who could diagnose his neurological problem (turned out to be a very rare condition) and although he's covered by private insurance, Mayo initially said they couldn't fit him in; then a month or so later they offered him an appointment. I don't know how common that is, but perhaps they might still come through for your mom.

BobStrauss
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Re: Mom needs hip revision: how can I fight on her behalf?

Post by BobStrauss » Sun Sep 23, 2018 8:34 pm

Rwsawbones wrote:
Sun Sep 23, 2018 8:13 pm
I suggest telling the referring orthopedic surgeon about the run around. A call from the referring surgeon can make the difference. There are 2 customers; your mother and the referring surgeon. Both need to be happy with the treatment if the consultant wants future referrals
Plan on doing just this on Wednesday. Hopefully he can line something up. We aren’t fixed on Mayo necessarily being the best option, it’s just that he mentioned Mayo and Cleveland as being places he would refer her to.

runner3081
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Re: Mom needs hip revision: how can I fight on her behalf?

Post by runner3081 » Sun Sep 23, 2018 9:23 pm

FrugalInvestor wrote:
Sun Sep 23, 2018 8:20 pm
I'm assuming that you mom in on Medicare. If so, this may explain Mayo's response....

http://www.startribune.com/mayo-to-pick ... 416185134/

From article:
Mayo Clinic’s chief executive made a startling announcement in a recent speech to employees: The Rochester-based health system will give preference to patients with private insurance over those with lower-paying Medicaid or Medicare coverage, if they seek care at the same time and have comparable conditions.
It goes on to say.....
Mayo will always take patients, regardless of payer source, when it has medical expertise that they can’t find elsewhere, said Dr. John Noseworthy, Mayo’s CEO. But when two patients are referred with equivalent conditions, he said the health system should “prioritize” those with private insurance.
You could possibly make the case that another well qualified surgeon has tried and failed and then referred your mom and ask Mayo to reconsider. Perhaps her current surgeon would be willing to contact the department with details.

Good luck!

Edit P.S. The entire article is very interesting and enlightening with regard to the larger issues surrounding medical care and costs in our country.
Every healthcare institution I have worked for has actively tried to control payer mix, it is just a reality. If you think this is bad, It is really crazy what they do in smaller private practices!

Taking out the ethics of equal access to healthcare, it does make sense.

If there were two groups of people who wanted to buy television at Best Buy and BB could get $1,000 from one group and $300 from the other group, they will obviously try to sell to Group A first :)

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BolderBoy
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Re: Mom needs hip revision: how can I fight on her behalf?

Post by BolderBoy » Sun Sep 23, 2018 9:52 pm

BobStrauss wrote:
Sun Sep 23, 2018 8:13 pm
She’s willing to travel anywhere in the US to get it done - perhaps even internationally but I doubt that’s truly necessary. She lives near the KU med center and is seeing probably the best reputed doctor for hip surgery in the KC area.
I sent you a PM.
"Never underestimate one's capacity to overestimate one's abilities" - The Dunning-Kruger Effect

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FrugalInvestor
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Re: Mom needs hip revision: how can I fight on her behalf?

Post by FrugalInvestor » Sun Sep 23, 2018 10:28 pm

runner3081 wrote:
Sun Sep 23, 2018 9:23 pm
Every healthcare institution I have worked for has actively tried to control payer mix, it is just a reality. If you think this is bad, It is really crazy what they do in smaller private practices!

Taking out the ethics of equal access to healthcare, it does make sense.

If there were two groups of people who wanted to buy television at Best Buy and BB could get $1,000 from one group and $300 from the other group, they will obviously try to sell to Group A first :)
I didn't pass judgement on Mayo in my post. As a matter of fact I made a point of recommending that others read the full article (did you?) because it alludes to what you're talking about and the tightrope that providers navigate in order to provide care to those who need it while maintaining enough revenue to be able to provide that care.
IGNORE the noise! | Our life is frittered away by detail... simplify, simplify. - Henry David Thoreau

runner3081
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Re: Mom needs hip revision: how can I fight on her behalf?

Post by runner3081 » Sun Sep 23, 2018 11:04 pm

FrugalInvestor wrote:
Sun Sep 23, 2018 10:28 pm
runner3081 wrote:
Sun Sep 23, 2018 9:23 pm
Every healthcare institution I have worked for has actively tried to control payer mix, it is just a reality. If you think this is bad, It is really crazy what they do in smaller private practices!

Taking out the ethics of equal access to healthcare, it does make sense.

If there were two groups of people who wanted to buy television at Best Buy and BB could get $1,000 from one group and $300 from the other group, they will obviously try to sell to Group A first :)
I didn't pass judgement on Mayo in my post. As a matter of fact I made a point of recommending that others read the full article (did you?) because it alludes to what you're talking about and the tightrope that providers navigate in order to provide care to those who need it while maintaining enough revenue to be able to provide that care.
I didn't take it that you were passing judgment on Mayo. People outside of healthcare don't know how prevalent or bad it can be and it can be spun in many different ways.

Read the article when it came out earlier in the year, or whenever it was. Sort of rolled my eyes. They were just one of the ones "caught" making direct statements about it.

mouses
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Re: Mom needs hip revision: how can I fight on her behalf?

Post by mouses » Mon Sep 24, 2018 8:27 am

123 wrote:
Sun Sep 23, 2018 8:09 pm
Depending on where she lives it might be a good option to explore evaluation and treatment at a nearby medical school, often closely associated with a large hospital. Her physician may be able to provide guidance. While major clinics can provide a 1 stop solution for a possible remedy often times a medical school clinic may develop a treatment that is not driven by insurance company billing codes.
Mayo may not be the best place. Since she is willing to travel, I would ask around for the best teaching hospital associated with a major medical school that has a good reputation for this problem. Not every place deals well with all problems.

I see doctors at Harvard Med for some things, and have never felt I was getting the runaround because I'm on Medicare.

I'm your Mom's age, and when I had a milder hip problem, a stress fracture, I got around on crutches. That made me feel more "normal" than a wheelchair. With some figuring things out, like using a shoulder bag or a robe with pockets at home or carrying a dish with food in it with one hand partly doing that and partly on a crutch, you can carry things and do stuff even if it almost always takes more trips or is slower. It helps the feeling of being independent.

toofache32
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Re: Mom needs hip revision: how can I fight on her behalf?

Post by toofache32 » Mon Sep 24, 2018 1:30 pm

drzzzzz wrote:
Sun Sep 23, 2018 8:10 pm
I would schedule appointments at other places, if geographically possible, and check the government's website about hospitals and orthopedic surgeons who perform hip surgery.
Ironically, this is one of the reasons it's getting harder to find surgeons willing to tackle more complex cases. Since they are being "graded", they have an incentive to avoid riskier patients who are more likely to do poorly regardless of the surgeon.

Shallowpockets
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Re: Mom needs hip revision: how can I fight on her behalf?

Post by Shallowpockets » Mon Sep 24, 2018 3:10 pm

Maybe you were not blown off at Mayo. How long have you waited since the reply they sent? Things move slowly in the medical corporate world.
Even though it is the Mayo clinic I can imagine that fixing a hip that has been fixed already three times would be fraught with complications of the actual surgery, the mechanics and the carpentry involved. Your mom has had problems with two bumps and a small fall, all not defined further. Although you say she is in excellent health, maybe that is suspect in the light of bumps and falls affecting that hip.
Perhaps you are focused on Cleveland and Mayo because we all think of those institutions as magic. Maybe there is an alternative place to fix her hip. So you can pursue the Mayo or look elsewhere. Depends on your timeframe.
You should probably get an opinion on why this hip is a failure for your mom. Seems like if the prosthesis is in place as it should be that there may be other things besides that.
I had a total hip done less than a year ago. I have been running, riding mountain bike, and hiking for some time now. Then again I had a base of those same things before on a very consistent basis, so the musculature to support a new hip and the attitude of getting back to better was all in place.

mouses
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Re: Mom needs hip revision: how can I fight on her behalf?

Post by mouses » Mon Sep 24, 2018 3:40 pm

I would also like to know why this keeps failing. What is going on? Some underlying problem that can be fixed? And if it doesn't get fixed there will be additional failures?

toofache32
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Re: Mom needs hip revision: how can I fight on her behalf?

Post by toofache32 » Mon Sep 24, 2018 3:50 pm

mouses wrote:
Mon Sep 24, 2018 3:40 pm
I would also like to know why this keeps failing. What is going on? Some underlying problem that can be fixed? And if it doesn't get fixed there will be additional failures?
I am a different kind of surgeon but in general, they can get infected, they can erode through weak bone, the muscles/tendons might not heal back as strong, they can develop bone loss around them, there is increased scarring and reduced blood supply every time you re-enter a surgical site which makes additional operations possibly less successful...lots of reasons to have problems. No treatment is 100% successful. Biology.

BobStrauss
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Re: Mom needs hip revision: how can I fight on her behalf?

Post by BobStrauss » Mon Sep 24, 2018 5:00 pm

Shallowpockets wrote:
Mon Sep 24, 2018 3:10 pm
Maybe you were not blown off at Mayo. How long have you waited since the reply they sent? Things move slowly in the medical corporate world.
Even though it is the Mayo clinic I can imagine that fixing a hip that has been fixed already three times would be fraught with complications of the actual surgery, the mechanics and the carpentry involved. Your mom has had problems with two bumps and a small fall, all not defined further. Although you say she is in excellent health, maybe that is suspect in the light of bumps and falls affecting that hip.
Perhaps you are focused on Cleveland and Mayo because we all think of those institutions as magic. Maybe there is an alternative place to fix her hip. So you can pursue the Mayo or look elsewhere. Depends on your timeframe.
You should probably get an opinion on why this hip is a failure for your mom. Seems like if the prosthesis is in place as it should be that there may be other things besides that.
I had a total hip done less than a year ago. I have been running, riding mountain bike, and hiking for some time now. Then again I had a base of those same things before on a very consistent basis, so the musculature to support a new hip and the attitude of getting back to better was all in place.
She’s really not focused on Mayo. She’d go to a back alley in Tijuana if that’s where the best surgeon is. It’s just that her previous surgeon mentioned Mayo and Cleveland specifically.

She’s not in absolutely perfect condition, obviously, being a 74 year old woman. She has some osteoporosis, being a mother of three. But she is (or at least WAS) active, still goes to the gym frequently, has a BMI that is low but well within the healthy range, and has no problem with blood pressure or cholesterol. Her attitude as a patient is fantastic. Hell, just a few months after her first hip surgery she was hiking with me in northern Vietnam.

Her first failure came because of a home renovation. Her sidewalk was taken out, and she was walking on some uneven plywood boards and tripped, falling down hard. After the first revision, during the latter part of the recovery phase, she tripped on some stuff late at night walking to the bathroom at a new apartment (again, due to the home reno) but caught herself, knocking her leg against the wall. Third revision they put in additional screws, but it seems to have shifted in the months following the procedure. No real event seems to be the cause.

Doctor mentioned something like attaching a plate to her pelvis, adding some support along those lines. We just want someone to do the procedure who has experience with that type of revision. I expect her to lose some range of motion regardless - I’m just hoping she can get some stability and be able to walk without pain.

Rwsawbones
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Re: Mom needs hip revision: how can I fight on her behalf?

Post by Rwsawbones » Mon Sep 24, 2018 5:47 pm

There is a lot to be said for having any surgery as close to home as possible. Follow up and dealing with complications as easily as possible can be critical. An older person is much more likely to have all manner of complications both surgical and non surgical. Congestive heart failure, pulmonary embolism, pneumonia and other potentially dangerous complications need to be dealt with alacrity. Traveling to distant parts of the country is hazardous to her health

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BolderBoy
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Re: Mom needs hip revision: how can I fight on her behalf?

Post by BolderBoy » Mon Sep 24, 2018 8:58 pm

toofache32 wrote:
Mon Sep 24, 2018 3:50 pm
mouses wrote:
Mon Sep 24, 2018 3:40 pm
I would also like to know why this keeps failing. What is going on? Some underlying problem that can be fixed? And if it doesn't get fixed there will be additional failures?
I am a different kind of surgeon but in general, they can get infected, they can erode through weak bone, the muscles/tendons might not heal back as strong, they can develop bone loss around them, there is increased scarring and reduced blood supply every time you re-enter a surgical site which makes additional operations possibly less successful...lots of reasons to have problems. No treatment is 100% successful. Biology.
+100
No matter who she sees, this is going to be a very tough case with the outcome not assured.
"Never underestimate one's capacity to overestimate one's abilities" - The Dunning-Kruger Effect

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