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What can be done to educate the medical community?

Posted by Shelley G on 2/04/02 at 08:36 (072516)

Hi, all. Another morning of pain and shuffling has passed and my husband is off to work. I am truly amazed how he keeps on keepin' on. I'm sure all of you fellow foot pain suffers are equally amazing. It breaks my heart and angers me when I think back over the past 2-1/2 years that Lloyd and I have spent trying to find out what was wrong with him. Have you all been faced with the 'let's wait three months and see how you are' syndrome that seems to be a chronic condition of the medical community? Our primary care physician has a physician's assistant in his office who always seemed to be assigned to Lloyd's case. I don't want to be negative about PAs because I certainly believe they have their place, but after a couple of office calls with no improvement and no ideas, one would think the PA would turn the case over. In our case, that didn't happen and so a full year passed with no progress. Finally he did suggest that Lloyd might 'think about' having a nerve conduction test sometime in the future. As my husband sat on the end of the exam table looking discouraged at what we both perceived as another office visit with the wait and see treatment plan, I finally said let's schedule the test now and not wait another three months. Our primary care physician, when I was showing him info I had gotten from the Mayo Clinic website about beriberi and the fact that thiamine was quickly destroyed in an alkaline environment (bile in the stomach) told me to 'stay off the computer'! How can we educate these people that the foot pain being suffered by some is not just a little twinge that is somewhat annoying, but instead is a debilitating condition that completely changes lifestyles? For my husband's well-being I've tried not to rant and rave about lack of interest and lack of listening on the part of the medical people, but I really am angry about it. It began to seem to us that since Lloyd wasn't improving with the quick fix methods of orthotics and anti-inflammatory agents, he became a thorn in the side of the medical community. After all, you couldn't see or hear anything wrong with him. On a bright note, however, Lloyd's third neurologist turned out to be a very caring and interested physician, and is the one who not only did a very thorough history and sensory exam, but explained the various maladies that could cause neuropathies and set about to test for them all. I am grateful every day for this man's professional concern and caring manner. Should the vitamin deficiency be Lloyd's problem and should he recover, the doctor is going to write up something for the medical journals. With recovery time being estimated at 6-12 months, obviously it will be at least 12 months before the article would hit the journals. What can we do in the meantime to help each other and other sufferers that are out there get the medical care needed?

Re: What can be done to educate the medical community?

Renee H on 2/04/02 at 09:01 (072518)

I know we all understand the 'let's wait three months syndrome'. I've been sent home many times with the promise that I'm doing great and will be fine in 2 weeks, or 2 months, or 5 months. We can't always just wait around. With foot problems that last more than a few weeks we need to educate ourselves and take control because most doctors do not understand or don't want to admit that they don't know how to help.

I wish your husband the best of luck. Keep us posted.

Renee

Re: What can be done to educate the medical community?

Glennx on 2/04/02 at 12:51 (072537)

Shelley: Lloyd is most fortunate to have such caring and inquisitive support.

Unfortunately the medical community isn't much different from any group of skilled crafts-people. Many are capable, a few are exceptional, a handful are risky.

Jack Welch, who recently retired after 20 successful years as CEO of General Electric, instituted a program he called 'differentiation.' Annually, all managers were compelled to review the performance of everyone on their staff and differentiate them into three groups as follows: 20 percent were identified as High Achievers (bright, creative, curious, results-driven people, clearly driven and determined to do well, and shape new and prosperous directions for the company). 70 percent were identified as capable at getting the day-to-day job done, perhaps even very capable, but not in the top 20. 10 percent were identified as 'dead weight,' and Welch's directive was to shape them up fast, or end their employment. This was done every year, and while it's easy to criticize the 'inhumanity' of the approach, one can appreciate two things: GE gradually unearthed one of the premier management teams in all of business, and almost certainly every profession can be similarly differentiated.

I have certainly experienced this range of performance in my own PF history --- though I was woefully unprepared for it. I was under the real illusion that all doctors were experts.

Now I know better, and I credit the people of heelspurs.com with teaching me.

As for treatment: Early and 'mild' cases of PF can probably be successfully treated by the 70-percenters. But if the condition becomes chronic and persistent, I think we need to track down a 20-percenter.

It ain't easy. First we need to let go. As Donna SL so nicely put it in another post, 'it's hard not to give people your trust when you're hurting, and desperate for relief.' When someone tells us we'll be better in three months, we want to trust their advice. Seeking help elsewhere means letting go of hope a little. And while it may in fact be false hope, it still helps some.

I've had to let go of the 'hope' I received from five doctors.

Second, finding a 20 percenter ain't easy either. The practioners who post here are clearly 20 percenters, probably top 5-percenters. But there aren't a lot of them. I travel 160 miles to see Dr. Ed.

The third neurologist you're seeing may be a top 20-er. I wonder though (not knowing much about Lloyd's circumstance) if also finding a top foot and ankle doctor isn't worth pursuing? Gaining another trustworthy perspective can be most useful.

The heelspurs community can sometimes help with a search.

Re: not to be contrarian, but to be contrarian...

elliott on 2/04/02 at 15:51 (072553)

'let's wait three months and see how you are' a few more times over might have avoided unnecessary surgeries in your husband's case. Not that I disagree with many of your complaints about waiting, e.g. for bloodtesting, and when your case is rarer these things happen more often, but I haven't had any problems with that sort of thing with my primary, even when with an HMO. Some of that has more to do with your insurance setup and your doc's relationship with it than it does TTS. If you don't like your primary, switch if you can. The sad thing is, often nothing (e.g. drugs, cortisone) works to alleviate one's TTS pain, and often no one (with the possible exception of spouse or equivalent) can understand the pain level, so there is an urgency to try *something*. But whether something like a nerve conduction test comes earlier or later, even the surgeon isn't always sure about your case. Given the risks, waiting before TTS surgery has its good side.

---

Re: not to be contrarian, but to be contrarian...

Shelley on 2/04/02 at 18:23 (072572)

I agree that some waiting is a good thing...not jumping into surgery is also a good thing. In my husband's case each time he waited three months and then returned for follow-up his condition had gotten worse. It's hard for me to understand the rationale of prescribing Celebrex for three months and follow up, and then when it has not done anything to help, prescribing Vioxx for the next three months and then follow-up. The most distressing is to report worsening of the condition and be told to come back in a month and see what happens. This went on from about September of 1999 until the end of November, 2000, when Lloyd had his first surgery. I certainly don't want to suggest that all doctors are the same. My concern, and I've heard it from several doctors, is that the medical community just doesn't know that much about TTS so is often misdiagnosed. My suggestion to educate the medical community was not a put down, but a sincere thought that those who suffer from these conditions are the ones that may have to do the educating. In my husband's case, his primary care physician never considered vitamin deficiencies. Who would in this day and age? But also in this day and age of many relatively new drugs being used for a variety of conditions, it would seem responsible to share your gained knowledge with your physician and others. It's along the line of why I research instead of expecting the doctor to do it all. I have one patient, they have hundreds. As far as changing doctors...it's not that easy to do where we live. There are virtually no doctors taking new patients.

Re: What can be done to educate the medical community?

Ed Davis, DPM on 2/04/02 at 21:00 (072587)

Shelly:

The bottom line is that your PA or family doctor must be willing to make referrals to apropriate specialists. I am not familiar with your situation but a number of HMOs make the primary care doctor a 'gatekeeper.'
Basically it is his or her job to restrict access to specialist care. Unfortunatley, the doctor must split his 'loyalty' between the patient and the insurance company.
Ed

Re: What can be done to educate the medical community?

Shelley on 2/04/02 at 21:40 (072594)

I really hate it that doctors have been put in that position with insurance companies. I realize that insurance companies are interested in the financial aspect of medicine, I don't think they should be allowed to dictate some aspects of medical care. Let's face it...if my house is on fire, I want a fireman first...then the insurance agent.

Re: Waiting is a double edged sword!

Ron B on 2/04/02 at 21:53 (072599)

I agree that all conservative options should be taken and these do take time (see my post on 'My treatment History'. B12 & B1 tests were recommended). Part of the problem is the time it usually takes to determine TTS (for me it took 6 months).

Had I gone for a second opinion sooner (and consequently receive a proper diagnosis of the cause) I would not be facing surgery 14 months later.

Re: not to be contrarian, but to be contrarian...

Glennx on 2/05/02 at 11:23 (072637)

Shelley: Your instincts are working well. Three months (or more) might be needed to heal, but it is too long to wait and see what's happening. When I finally hooked up with a great caregiver (Dr. Ed) he 'insisted' I stay in regular touch. Early on I scheduled appointments every three weeks. At each appointment we'd review where I was, what seemed to be working, and what needed a tweak. Following an ESWT treatment I've gone longer between appointments to allow the ESWT to do its work, but I still communicate progress via e-mail, and get input that's helpful and encouraging.

I don't know where you live, and I try and avoid advice giving, but if I weren't confident in the care I was receiving, and wasn't making progress, I'd explore options outside my local community. (I drive to another state to See Dr. Ed and drive to another country for ESWT). Or, sometimes too, showing up on a caregiver's doorstep rather than seeking an appointment by phone can pay off. And, as you can appreciate, there's a lot to be learned on this website.

Re: What can be done to educate the medical community?

Renee H on 2/04/02 at 09:01 (072518)

I know we all understand the 'let's wait three months syndrome'. I've been sent home many times with the promise that I'm doing great and will be fine in 2 weeks, or 2 months, or 5 months. We can't always just wait around. With foot problems that last more than a few weeks we need to educate ourselves and take control because most doctors do not understand or don't want to admit that they don't know how to help.

I wish your husband the best of luck. Keep us posted.

Renee

Re: What can be done to educate the medical community?

Glennx on 2/04/02 at 12:51 (072537)

Shelley: Lloyd is most fortunate to have such caring and inquisitive support.

Unfortunately the medical community isn't much different from any group of skilled crafts-people. Many are capable, a few are exceptional, a handful are risky.

Jack Welch, who recently retired after 20 successful years as CEO of General Electric, instituted a program he called 'differentiation.' Annually, all managers were compelled to review the performance of everyone on their staff and differentiate them into three groups as follows: 20 percent were identified as High Achievers (bright, creative, curious, results-driven people, clearly driven and determined to do well, and shape new and prosperous directions for the company). 70 percent were identified as capable at getting the day-to-day job done, perhaps even very capable, but not in the top 20. 10 percent were identified as 'dead weight,' and Welch's directive was to shape them up fast, or end their employment. This was done every year, and while it's easy to criticize the 'inhumanity' of the approach, one can appreciate two things: GE gradually unearthed one of the premier management teams in all of business, and almost certainly every profession can be similarly differentiated.

I have certainly experienced this range of performance in my own PF history --- though I was woefully unprepared for it. I was under the real illusion that all doctors were experts.

Now I know better, and I credit the people of heelspurs.com with teaching me.

As for treatment: Early and 'mild' cases of PF can probably be successfully treated by the 70-percenters. But if the condition becomes chronic and persistent, I think we need to track down a 20-percenter.

It ain't easy. First we need to let go. As Donna SL so nicely put it in another post, 'it's hard not to give people your trust when you're hurting, and desperate for relief.' When someone tells us we'll be better in three months, we want to trust their advice. Seeking help elsewhere means letting go of hope a little. And while it may in fact be false hope, it still helps some.

I've had to let go of the 'hope' I received from five doctors.

Second, finding a 20 percenter ain't easy either. The practioners who post here are clearly 20 percenters, probably top 5-percenters. But there aren't a lot of them. I travel 160 miles to see Dr. Ed.

The third neurologist you're seeing may be a top 20-er. I wonder though (not knowing much about Lloyd's circumstance) if also finding a top foot and ankle doctor isn't worth pursuing? Gaining another trustworthy perspective can be most useful.

The heelspurs community can sometimes help with a search.

Re: not to be contrarian, but to be contrarian...

elliott on 2/04/02 at 15:51 (072553)

'let's wait three months and see how you are' a few more times over might have avoided unnecessary surgeries in your husband's case. Not that I disagree with many of your complaints about waiting, e.g. for bloodtesting, and when your case is rarer these things happen more often, but I haven't had any problems with that sort of thing with my primary, even when with an HMO. Some of that has more to do with your insurance setup and your doc's relationship with it than it does TTS. If you don't like your primary, switch if you can. The sad thing is, often nothing (e.g. drugs, cortisone) works to alleviate one's TTS pain, and often no one (with the possible exception of spouse or equivalent) can understand the pain level, so there is an urgency to try *something*. But whether something like a nerve conduction test comes earlier or later, even the surgeon isn't always sure about your case. Given the risks, waiting before TTS surgery has its good side.

---

Re: not to be contrarian, but to be contrarian...

Shelley on 2/04/02 at 18:23 (072572)

I agree that some waiting is a good thing...not jumping into surgery is also a good thing. In my husband's case each time he waited three months and then returned for follow-up his condition had gotten worse. It's hard for me to understand the rationale of prescribing Celebrex for three months and follow up, and then when it has not done anything to help, prescribing Vioxx for the next three months and then follow-up. The most distressing is to report worsening of the condition and be told to come back in a month and see what happens. This went on from about September of 1999 until the end of November, 2000, when Lloyd had his first surgery. I certainly don't want to suggest that all doctors are the same. My concern, and I've heard it from several doctors, is that the medical community just doesn't know that much about TTS so is often misdiagnosed. My suggestion to educate the medical community was not a put down, but a sincere thought that those who suffer from these conditions are the ones that may have to do the educating. In my husband's case, his primary care physician never considered vitamin deficiencies. Who would in this day and age? But also in this day and age of many relatively new drugs being used for a variety of conditions, it would seem responsible to share your gained knowledge with your physician and others. It's along the line of why I research instead of expecting the doctor to do it all. I have one patient, they have hundreds. As far as changing doctors...it's not that easy to do where we live. There are virtually no doctors taking new patients.

Re: What can be done to educate the medical community?

Ed Davis, DPM on 2/04/02 at 21:00 (072587)

Shelly:

The bottom line is that your PA or family doctor must be willing to make referrals to apropriate specialists. I am not familiar with your situation but a number of HMOs make the primary care doctor a 'gatekeeper.'
Basically it is his or her job to restrict access to specialist care. Unfortunatley, the doctor must split his 'loyalty' between the patient and the insurance company.
Ed

Re: What can be done to educate the medical community?

Shelley on 2/04/02 at 21:40 (072594)

I really hate it that doctors have been put in that position with insurance companies. I realize that insurance companies are interested in the financial aspect of medicine, I don't think they should be allowed to dictate some aspects of medical care. Let's face it...if my house is on fire, I want a fireman first...then the insurance agent.

Re: Waiting is a double edged sword!

Ron B on 2/04/02 at 21:53 (072599)

I agree that all conservative options should be taken and these do take time (see my post on 'My treatment History'. B12 & B1 tests were recommended). Part of the problem is the time it usually takes to determine TTS (for me it took 6 months).

Had I gone for a second opinion sooner (and consequently receive a proper diagnosis of the cause) I would not be facing surgery 14 months later.

Re: not to be contrarian, but to be contrarian...

Glennx on 2/05/02 at 11:23 (072637)

Shelley: Your instincts are working well. Three months (or more) might be needed to heal, but it is too long to wait and see what's happening. When I finally hooked up with a great caregiver (Dr. Ed) he 'insisted' I stay in regular touch. Early on I scheduled appointments every three weeks. At each appointment we'd review where I was, what seemed to be working, and what needed a tweak. Following an ESWT treatment I've gone longer between appointments to allow the ESWT to do its work, but I still communicate progress via e-mail, and get input that's helpful and encouraging.

I don't know where you live, and I try and avoid advice giving, but if I weren't confident in the care I was receiving, and wasn't making progress, I'd explore options outside my local community. (I drive to another state to See Dr. Ed and drive to another country for ESWT). Or, sometimes too, showing up on a caregiver's doorstep rather than seeking an appointment by phone can pay off. And, as you can appreciate, there's a lot to be learned on this website.