Today's (Tuesday) visit with new doctor

(This is posted both at HW PC and at HW CP, however, due to the natural interest at HW CP, will probably expand this topic there)

 

Spent about 45 minutes total “face” time, divided into two sections.  First part was going over medical history, second part physical examination and minor testing.

 

I will start with the positive I got out of the visit:

 

The doctor feels I have a serious situation on hand.

 

Further testing will be required to fully diagnose my condition.

 

He feels that the root cause is likely as the result of extreme radiation damage.

 

He said that my condition has all the earmarks of CRPS (Complex Regional Pain Syndrome), and that it seemed to be in an advanced state.

 

If it is, and left untreated, I could become completely disabled and end up in a wheelchair.

 

The negative:

 

Never saw a medical practice so obsessed with the money part, was badgered from the front desk, with the nurse, then the doctor, then even trying to check out – it was all about trying to obligate me to spend more money, and all appointments and tests have to be paid in full up front, even before being conducted.

 

Before the nurse began to take my vital signs, she was required to give me a memorized spill about how the doctor is totally opposed to the ACA, and how he refuse to see Medicare, Medicaid, and even Champus paitents, unless they will self-pay.  She said he opted out of all the government systems.  I stopped her cold turkey about 5 minutes into this spill, and told her I wasn’t interested in the doctor’s political opinions.

 

The offices were ill equipped and shabby in my opinion.  Too many pictures of the doctor every where  you turned your head and self-made ego boosting remarks about him on the walls

 

Also, the doctor made a point of saying that he didn’t believe in conventional pain medications, and won’t prescribe any regardless.  An odd view to have for a PM doctor, in all my research, most PM doctors try to limit drug use, but even in the treatment of CRPS, drugs are often used as part of the strategy.  I couldn’t help but wonder if he had lost his license to dispense drugs.  And perhaps he had been flagged out of both Medicare and Medicaid.

 

Many of his methods of treatment were identical to the approach that any Chiropractor would utilize, and to be honest, felt I was in a Chiropractic office instead of a doctor’s office.

 

He didn’t have any interest in seeing any of my recent scans, including the bone scan and CT’s done by the orthopedic doctor last year, or even of my recent PET/CT scans.

Conclusion:

 

I feel I am on the right track, my chronic pain issues are serious and on the increase and it could be leading to a more serious situation.

 

But there was nothing he talked about that a good neurologist, using conventional neurological care couldn’t take care of.

 

Since I have Medicare only, I can’t be seeing a doctor whose treatments and service have to be for in cash and advance.  Even the next visit, had I agreed to it, would cost me over 1,500 bucks up front.

 

Going to report to my oncologist, and see if he can get me referred to a top MD Anderson associated neurological practice.

 

Felt like I basically threw 200 bucks out the window.  Not giving up, if anything, I am more driven to get an answer and a solution if possible.  This just didn’t pan out to be the right answer, one doesn’t always know in advance.  There were too many red flags.

 

David in SC

 

 

 

 

 

David,

Gosh I hate to hear this. I mean it's good that this Dr (if you can call him one) said that you had all the earmarks for CRPS. So you know that you may be on the correct path to figuring it out.

As for the rest, I have to agree with you, there are a bunch of red flags here. I don't blame you one bit for not booking a follow up appointment with him.

I hope that your oncologist can quickly get you in to see a top notch neurologist. I hate hearing that it looks like CRPS, it's so totally unfair that the Radation treatments you received were way to much. Apparently, the Radation Oncologist didn't know what she was doing. (I think it was a she)?

You have come through so much David, I truly believe that you won't end up in a wheelchair. I know you are sick and tired of being sick and tired. I also know that dealing with the amount of pain you deal with is a HUGE part of making you feel like giving up. From the short time I've been reading your story and shaing posts with you I've learned something about you.

You are a true FIGHTER, you DON'T give up no matter what seems to be thrown at you. Do you FEEL like giving up, YOU BET YOU DO. However, YOU have an INNER STRENGTH that propels you to keep fighting. I believe that IF you didn't have that INNER STRENGTH you'd have stopped fighting a long time ago.

I'll continue to pray and be there for you if you need. I hope that you are seen very very soon. Try to rest some today and I hope your pain levels are much lower than they have been.

Hugs,
Barbara

RUN AS FAST AS YOU CAN FROM THIS QUACK.. A PM DOCTOR NOT ACCEPTING ANY FORM OF GOV'T INSURANCE IS BIG RED FLAG THAT SOMETHING IS REALLY WRONG.

OF course this doctor found some serious signs of CRPS and he did this without looking at one of your scans or x-rays and lots of testing is needed.. If I was in your situation I would put a stop to your $200 payment these people did nothing for you but try and sell you some more expensive tests.

How does radiation cause anybody to have CRPS

 Complex regional pain syndrome typically develops after an injury, surgery, stroke or heart attack, but the pain is out of proportion to the severity of the initial injury, if any.

Hope you feel better and I am sorry you had to experience a visit with someone like that.

Post Edited (rjbeck) : 6/12/2013 4:04:03 AM (GMT-6)

David, I'm sorry this appointment didn't go as you hoped.

I'd agree with the others - if you do have CRPS, a neurologist would probably help you more than this doctor. .

Far too many red flags for me too - bone scans and CT won't necessarily help with CRPS diagnosis... but things like patchy bone loss and muscle atrophy can add weight to a suspect case if they're present. That this doctor wasn't interested in any of your prior records or work-up would make me run - and fast.

I hope your oncologist can find you a decent doc to see.

rjbeck - my understanding is that -any- tissue damage has the potential to trigger CRPS, not necessarily an injury in the typical sense. I've read cases of CRPS, or CRPS-like conditions (the very severe pain, though the vasomotor changes you see in the limbs aren't so consistent) developing in the breast following radiation therapy.


Laura

Thanks for keeping us posted David, I hate hearing about doctors like this and this doctor should have his license yanked. Only thing he told you that help is he thinks its serious which is what the other doctors you saw should've said.
So very sorry about this visit. Sure hope your onco can help you with the next step for the neurologists. Hope your not in to much pain after this appointment. Many well wishes to you.

Vickie - thanks for the input, I agree with you. I have lots of radiation scarring. when dr. "K" at MUSC inspected my scans when I visited him, he said "I have never seen anyone whose lower insides were so damaged by radiation". The trauma of that even alone, from what I understand, could turn regular chronic pain into CRPS. Even this new "doctor" said that the pain had spread very fast (in the bigger picture of things) from my hip where it originally started, to as much of my lower body as it is currently covered.

laura - thank for you input, I agree 100%. I have developed a lot of atrophy in both of my lower legs, in fact from my hips down on both sides, despite being in oncology rehab for over 2 years now. Getting more and more weakness in my legs, but mostly the right side.

thank, Sophia, trust me, I am moving quickly forward to find a top quality neurologist before this gets out of hand

chart - to say it was an eye opener would be an understatement, but it does give me a sense of real direction now, so in an odd way, he helped me. while he posts many glowing reports about himself from aledged patients, I wonder how many people like me simply walked away after one visit

David

To answer all so far - yes, I am running as fast as I can from this "doctor". I think any of you, would have done the same thing. And in my report here, I just quickly put down the major points of this visit. As I remember more, I will post more. He did get 200 out of me, but that will be the only money.

Even as I was getting dressed, the doctor started pushing, why don't you let me give you this first nerve test, you can have it for 500 dollars, you are already here. I said, no, I was only here for a consult. Then he pushed for injections. I said what are you injecting, steroids? He said instead, I use various medications, the shots range from 69 to 1500 a piece. I said, how long do they last. Oh, sometimes a few weeks to a month, usually the patients have to have them twice a month. I said, and where would you inject me when you don't even know where the pain is primarily coming from?

Tell me that's not a red flag. When I checked out, that woman kept it up, are you sure you don't want the doctor to do something for you today before you leave? I was getting mad by then, and I reminded her that I was only there for an initial consultation.

Interesting...Dr. S's website explains why he opted out of Medicare in 1998.

Medicare Opt Out: Why Doctor Opted Out Of Medicare

I am a Greenville physician who specializes in physical medicine and rehabilitation, or complex chronic pain, and serve on the medical staffs of Bon Secour’s St. Francis Community Hospital and Greenville Memorial Hospital.

Part and parcel of a physician's soul is caring for the sick. It's what motivates one to enter the medical profession. Yet, most citizens who have Medicare coverage today are finding fewer physicians who will accept Medicare patients. In fact, many physicians, including myself, are dropping out of the Medicare program altogether.

Why would a physician who has treated Medicare patients for over 15 years suddenly decide to opt out of the Medicare program?

The federal government, while possibly well intentioned, has now created such a complex maze of Medicare rules and regulations that compliance is practically impossible. By the time the physician figures them out, they have changed. By the time on realizes that they are not in compliance, they are audited.

At this point, the federal government is not concerned that the doctor was not aware of the dynamic rules and regulations. To them, the doctor is committing fraud and will be fined up to $10,000 per line item error.

To add to the frustration of keeping abreast of ever-changing rules and regulations, when a physician has a problem with Medicare, he does not know where to turn for help. Medicare is run by the Center For Medicare & Medicaid Services (CMS), also formally known as the Health Care Financing Administration (HCFA). Their main office is in Washington, D. C., but they have regional offices all over the United States. For example, South Carolina's regional CMS office is in Atlanta.

The South Carolina Medicare program has, however, decided that due to their absence of nerve injury, the service is unnecessary. Just a year earlier, when she had private insurance, the procedure would have been covered. Even if by some chance it was not, at least she could choose to pay for it herself. Now that she is on Medicare, however, she has no choice at all.

Physicians are very cautious about patient care in this atmosphere. I, for one, am tired of honoring the Medicare system more than my patients' needs. I welcome the possibility of establishing and renewing physician-patient relationships that are invaded by federal rules and regulations which cannot be followed and appear only to prevent the delivery of care.

This year, U.S. Sen. Kyl introduced a bill, which would allow citizens with Medicare to pay for their own health care (this option was taken away from Medicare patients years ago). If individuals were allowed the opportunity to privately pay for their health care, costs to the government and taxpayers would go down. The bill became law, but before it did CMS and President Clinton attached the following stipulation: If the physician contracted with one Medicare patient who decided to pay for his/her own health care, then the physician could not bill Medicare for any other Medicare patient for two years.

There was an attempt in Congress to remove the two-year exclusion from the new law. HCFA lobbied extensively against this change, arguing that it undermines their ability to control the delivery of health care, and the stipulation remains.

Medicare has become the single largest payer of health care services, and opting out to the Medicare program under the Kyl bill surely will mean lost opportunities for the physician. It is not an easy decision to make.

There are, however, few basic truths more fundamental than the belief that preservation of life and liberty also includes the right to unrestricted freedom when it comes to one's own health care. Opting out allows the physician to place patient care ahead of federal rules and regulations. It empowers him to practice proactive medicine once again. I am a Greenville physician who specializes in physical medicine and rehabilitation, or complex chronic pain, and serve on the medical staffs of Bon Secour’s St. Francis Community Hospital and Greenville Memorial Hospital.

Part and parcel of a physician's soul is caring for the sick. It's what motivates one to enter the medical profession. Yet, most citizens who have Medicare coverage today are finding fewer physicians who will accept Medicare patients. In fact, many physicians, including myself, are dropping out of the Medicare program altogether.

Why would a physician who has treated Medicare patients for over 15 years suddenly decide to opt out of the Medicare program?

The federal government, while possibly well intentioned, has now created such a complex maze of Medicare rules and regulations that compliance is practically impossible. By the time the physician figures them out, they have changed. By the time on realizes that they are not in compliance, they are audited.

At this point, the federal government is not concerned that the doctor was not aware of the dynamic rules and regulations. To them, the doctor is committing fraud and will be fined up to $10,000 per line item error.

To add to the frustration of keeping abreast of ever-changing rules and regulations, when a physician has a problem with Medicare, he does not know where to turn for help. Medicare is run by the Center For Medicare & Medicaid Services (CMS), also formally known as the Health Care Financing Administration (HCFA). Their main office is in Washington, D. C., but they have regional offices all over the United States. For example, South Carolina's regional CMS office is in Atlanta.

Since the Medicare program is so large, CMS contracts with other companies to actually run the program. CMS calls these companies the Intermediary. In South Carolina, the Medicare Intermediary is a subsidiary of Blue Cross Blue Shield, called Palmetto Government Benefits Administrators.

Even the Intermediary admits that it has a hard time keeping abreast with all of rules and regulations of CMS. They may make rulings against what would otherwise seem to be obvious CMS policy. If pointed out to them, don't be surprised if they are deaf to the complaint.

If a physician provides care that they believe to be medically necessary and Medicare pays for it, but then Medicare later decides during an audit that is was unnecessary, the physician will be penalized. The most common and on-going disagreement between physicians and Medicare federal regulations revolves around the issue of was the care medically necessary?

Every patient contact becomes an encounter with choice: think first of the patient? Or of the system? It has gotten to the point where only in a minority of cases can the two needs be met simultaneously.

Mrs. Gray, a 65-year-old woman from Greenville, is a good example. She is a kind soul who suffers from chronic low back pain. Her X-rays reveal degenerative arthritis, and her neurologic studies show no evidence of nerve damage. Having not done well with treatments such as medicine by mouth or physical therapy, she is a very good candidate for an epidural steroid injection.

Hardly a day goes by without some form of the media reporting how the government has further eroded the personal choice of American citizens. All too frequently, the deepest erosion of personal choice is an intensely important one—Americans' health care.

With legislative initiatives like the False Claims Act, the Kennedy Kassembaum Bill, and the Patient Privacy Act, Americans are told they will be taken care of by the government. All is well. Our rights are preserved. When they go to the doctor, however, they find out that just the opposite is true. Medicare participants are confronted with a list of services no longer available to them simply because they are in the Medicare system. Even if they want to privately contract for their own care, they cannot. Doctors are required to file affidavits with Washington stating that they will never file a Medicare claim in order to participate in a private contract, and only a few doctors can afford this.

A lack of accessibility for coverage has also infiltrated itself into non-government sponsored programs. Every day Americans find out that an insurance company clerk (who may have no medical training) determines which health care services are eligible. When coverage for a claim is denied, it has a distinctly detrimental impact on the physician-patient relationship.

In a free market, changing insurance policies seems like an obvious answer. However, acceptance by a new carrier is often difficult due to coverage exclusions for pre-existing health problems. Frequently, these alleged problems concern health care issues of which the individual was not even aware.

A few savvy Americans may recall that it is illegal for an insurance company to deny coverage on the basis of pre-existing conditions. That was the carrot that was dangled when the Kennedy Kassembaum bill finally enacted the vast majority of the Clinton Health Care Plan.

Yet when people question the insurance carrier about this exclusion, they find out that this provision of the law is not enforced. In fact, none of the provisions that protect personal rights are. Only punishments are enforced.

The FBI spends its time sleuthing down health care providers, who are, according to the Attorney General's Office, the country's greatest menace. Declaring physicians as its number-one target, it is no wonder that doctors no longer want to work for themselves.

Consumers and providers of health care find that they are faced with such a complex web of medical laws that it is difficult to determine if they have violated one or not. Being part of the system means playing the role of the abused or of the victim. Just pay the premiums. Expect restrictions. Payer-centered and government-controlled care, which is the name of the game in today's market.

Rather then unifying as a team to protect health care freedom rights, the doctor-patient relationship has deteriorated. The doctor is forgetting how to deliver, and the consumer is forgetting how to receive patient-centered care.

It's no surprise this has happened. What is a surprise is why so few know what to do about it. Individuals in all walks of life need to begin to take more ownership in their health care. They need to go into a doctor's appointment prepared for the visit, and prepared to take responsibility for the entanglements that their third-party payer may bring with that visit.

Doctors need to remember that their first responsibility is to their patient. They need to demonstrate both empathy and decisiveness that reassures patients of their commitment to the patient's well being.

The doctor and the patient have to work together to fight against third-party interference with their relationship. They have to stop any further dismantling of this doctor-patient trust. It is important to repeal legislative provisions that serve to degrade that relationship and instead enhance opportunities that promote responsible choice.

It's all about responsible choice. Both the doctor and the patient have to demonstrate the courage to commit to responsible choice, and to follow through with that commitment. Only then will the health care system function as it should.

A version of this article appeared in the Greenville News, Greenville, SC, January 8th, 1998

David, I'm glad you're on the right track with getting diagnosed, but I have to agree that this doctor just isn't right. Just in my own opinion, I have to wonder what kind of compassion a doctor has when he opts out of medicare, using the excuse that it's the government's fault with all of their regulations and such. It just makes me personally think that he's greedy. Granted that very well could be farthest from the truth, but that's just my take on it. I think things will be better with the Neuro that you will see next.

David

Re:reason for questioning by nurse.. Perhaps already-anti-ACA people are the (only) target patients for this 'doctor' ??

Impossible to determine why that practice is the way it is.. some folks obviously use it or it would not be viable.

Regulations are apparently quiet complex & this practice has decided to not want to have any outside rules?? !!

Aside from that, you saw the obvious red flags re: not looking at your test results & high pressure to commit to (& pay upfront) for various tests & procedures. Seems only ill-informed or desperate people use this doctor.

Prayers continue for you David

I think David said this dr is connected with some hospital there in Greenville, I cannot recall the name of it right now. My PmMdr told me any dr can decide not to file Medicare, it is not written in blood they have to file it.

That was some interesting reading and there is quite a bit of truth to it too.

Stray, of course doctors don't have to opt to be in Medicare/Medicaid, its their choice. I answered your other questions on the HW PC side, so won't repeat it here.

I don't want to politicize this thread, but so there is no misunderstanding, I fully support the ACA, and look forward to its implementation. That's all I will ever say on it.

The connection to my preferred hospital system was much less formal than I was led to believe. Starting to believe it only has to do with renting office space in one of the hospitals many medical buildings. I saw no other open connection to the actual hospital systems, like I have with some of their other practices.
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Sephie,

It would still seem like many of his patients would typically be on Medicare or Medicaid. Would look like he's cutting off a major source of income in his specialty field. Lots of people on disability would hardly have the resources to pay all these visits and tests out of pocket.

david

David, sorry to hear this. He really sounds like a quack. Glad you're staying far from this doctor as it doesn't sound right. Your wife did make some good observations.
I'm not familiar with health-care in the US so I'm sorry I can be of any help with your questions.
Thanks for the update.

UA

thanks UA, didn't see your post. I am ok with this, just will move on to the next step.