Hi, my name is Robyn but my friends call me Cutsnake. They started calling me that when I was a teenager as I was ‘mad as a cut snake’… However, things have changed alot since those crazy days.
When I was around 20 I was diagnosed with LPHS after having spent the previous 6 months trying to find a Urologist or Neurologist who could tell me what on earth was going on with me. I was passing huge amounts of blood in my urine (which was so full of blood that it looked like red wine), and in so much pain that all I did was roll around the bed crying and calling out in pain.
FINALLY, I found a neurologist who diagnosed me, and although he advised me that it was unknown at that time as to what actually causes LPHS, he did tell me that there had been some data which indicated that a reasonably high percentage of the very few people worldwide who have this disease, had at some time during their childhood been on various types of antibiotics (IV) whilst being in hospital. Sure enough, this jived with my history….
When I was 6 yrs of age, I was burnt in a fire and spent 4 months or thereabouts in hospital, having a particular antibiotic running through my drip. This antibiotic has now been shown to cause kidney and liver problems in children, years later, and is therefore no longer recommended for use in children (and when used in adults, only if regular blood tests are undertaken to test for toxicity – particularly given the antibiotic itself can cause kidney and liver failure). The antibiotic I speak of is called Gentamicin.
Anyway, the crux of the matter is that I have now been living with LPHS for coming up 18 years. My life (or existence)is pretty miserable. The pain itself is the debilitating part of the whole thing. Of course I’ve been on huge amounts of opiates for the duration, and I guess I am now what you’d call an addict. No, I’d be really really crook if I were to stop taking my painkillers abruptly, but they no longer narcotize me (I don’t go on the nod or anything like that) – but rather, just help to control the pain.
LPHS has destroyed my life in a lot of ways, although probably because I let it do so. It is very easy to become depressed when you have a chronic illness or pain problem. Although my GP and kidney specialists all tried to get me to deal with my depression, I didn’t do anything about it myself until I was just about ready to ‘end it all’.
Obviously, my partner of 15 odd years got sick of seeing me in pain all of the time, and got sick of never being able to just go and have a night out without having to worry about whether I’d be too sick on the night to be able to go, and so he just ended up packing his bags and leaving me with our daughter who was only 6 at the time. She’s 9 now, and the light of my life. Without her, I don’t know what I would have done.
But, by him walking out, it forced me to have to deal with my depression, because I knew if I didn’t, I’d be consumed by it and then there would be nobody to really take care of my daughter.
I guess I’ll now be on antidepressants for the rest of my life, and although that doesn’t sit well with me, I guess its better than the alternative.
We are learning that although I’m in pain and really unwell most of the time, that we can do it, and we can be happy while we are. If I hadn’t had my daughter that I had to care for, I think I’d have just given up and spent ALL of my time in bed or on the couch, rather than just the significant amount of time that I was.
No, I’d love to be free of LPHS, but I’m guessing that’s just a fantasy and I’ll just have to live with it for the rest of my life. Yes, I am sick of being sick all of the time, but what else am I going to do? It’s pretty much out of my hands.
What I can say though is that despite how scary it all was at the beginning, once you actually come to terms with whats going on with your body, and you learn to work your life around your disease, you can cope, you can thrive. The trick is NOT LETTING YOUR DISEASE BECOME THE FOCUS OF YOUR LIFE. If somebody had told me 5 years ago that in a handful of years my lifelong partner would have hit the road and left me with a young daughter to care for all on my own, whilst I was in extreme bad health, I’d have laughed in their face. Well, now I’m doing it, and despite it all, I’m doing okay.
My neurologist and pain specialist are looking at putting an intrathecal morphine pump into me within the next 12 months, and I’ve got to admit, that although I’m really scared about having the surgery (and about something going wrong whilst I’m on the table), I’m actually looking forward to it because they tell me that it will significantly reduce the amount of morphine that I’m having to take because the morphine will be going straight to the site that is causing the pain (the nerves around the kidney), and that I will be receiving the best possible control of the pain. The only drawback is that I’ll have to keep going back to the hospital and getting the reservoir filled up with more morphine every couple of months. I guess that’s a pretty small drawback in the grand scheme of things.
All I can say is that I hope the rest of you people out there in cyberspace who are going through the dramas of living with LPHS or worse still, trying to find a doctor who can diagnose you if LPHS is your problem, that you actually find a doctor who if they don’t know whats going on with you, send you to somebody who can sort you out and get you onto a regime or program that can help. Although I’ve got great specialists on my ‘team’ now, I had to see a whole lot of quacks before I found them.
I hope your not having a really bad day with your pain….believe it or not, today is probably the best I’ve been in the past 3 months. Anyway, I’ll sign off. I hope this ‘my story’ has helped somebody out there who is going through this.
By the way, if you want to reply to my email, feel free. My email address is [email protected].
Russell Portenoy, MD
Pain Medicine Specialist
Chairman, Department of Pain Medicine and Palliative Care, Beth Israel
Depression and Chronic Pain Is Extremely Common
In some patients, depression follows the pain, and if you can effectively treat the pain, the depression would get better. And in some patients the depression seems to drive the pain, says Dr. Portenoy. He explains that when these two conditions coexist, patients need carefully coordinated treatment.
Dr. Portenoy is among New York Magazine’s “Best Doctors” for 2008, as listed in the June 16, 2008 edition of the magazine. The New York Magazine list is excerpted from Castle Connolly’s annual guidebook, “Top Doctors: New York Metro Area.”
First Avenue at 16th Street
New York NY 10003
Questions About Using Opioids for Chronic Pain
Q: Would you say that opioids are a last resort?
A: No. Opioids should be considered for every patient with chronic, moderate to severe pain, but in every case, you would only prescribe the opioid after carefully considering the responses to several questions.
Q: What are those questions?
A: First, what is typical treatment with respect to this pain? Second, is there some other therapy that has as good or better efficacy and safety? Third, is this person at relatively high risk of opioid side effects for whatever reason? And fourth, is this patient likely to be a responsible drug taker, or is there a history of substance use problems?
So in some cases, for example a patient with severe pain who has not done well with several steroid or other drug injections and physical therapy, and who presents to the doctor with back pain so severe that he can’t walk—that patient might be considered a candidate right then for a trial.
Q: What is an example of that review process with a typical patient who has arthritis of the knees and hips.
A: Everybody would agree that the first-line therapies typically would include acetaminophen, physical therapy, or a TENS unit, or maybe—if there’s a single joint that has some swelling—an injection.
The next-line therapy would be an NSAID. But if that person has a history of an ulcer or a history of bad heart disease, the NSAID risk gets to be relatively high. So that patient might be considered for a trial of an opioid at that point.
Q: If I’m that patient and I’m put on a trial, how will I use the drugs?
A: Almost everyone with chronic pain appears to benefit more from regular, fixed, scheduled use as opposed to PRN [when needed] use. There is a general perception, two decades old, that patients do better if they have pain medicine in their blood 24/7. It’s done in a sustained way, so that the blood levels don’t fluctuate much.
Q: In the whole range of treatments for chronic pain, where do opioids fit in?
A: The chronic use of opioid therapy to treat noncancer pain syndromes, such as headache and low-back pain, and arthritis, continues to be controversial. Most pain specialists nowadays would say that opioids might be considered in any patient who has chronic, moderate to severe pain, but generally should only be implemented if there are no other treatment options that have a favorable and safe effect. The shortest way of saying this is that most pain specialists would not consider opioids first-line treatment for chronic noncancer pain except in highly selected patients.
But we have accumulated clinical experience that suggests the following: There is a sub-population of patients with chronic pain, who can be given access to long-term opioid therapy, and they will experience sustained and meaningful control of pain in the absence of intolerable side effects and without the development of tolerance or the need for dose escalation. And they will not develop any aberrant drug-related behaviors consistent with abuse, diversion, or addiction.
Q: What about the use of opioids for breakthrough pain?
A: It looks like about 60% of patients with chronic pain have flairs that can be called breakthrough pain, and in the cancer population, the use of a short-acting opioid co-administered with a long-acting drug is the standard of care.
With noncancer pain, it’s a moving target. People are trying to figure out if it should be the standard of care or not. I think it should not. I think it should be a case-by-case decision.
Q: What are some of the risk factors when opioids are being considered? Do they all relate to addiction?
A: No. Suppose you have a patient with very bad lung disease who might be at risk for the respiratory effects. (Opioids can suppress breathing.) Or you have a patient who has severe gastrointestinal problems—where the constipation induced by the opioid might become very problematic. Or you have an elderly person with arthritis who has a mild dementia: In that case, the bias would be to try an NSAID because the opioid has a higher likelihood of causing cognitive impairment.
Q: Is the ultimate concern, though, addiction?
A: No, it’s broader than that. It’s responsible drug use, a term I use purposely because for clinicians, addiction is an uncommon problem—a very, very serious problem, but it’s an uncommon problem.
Q: So there are irresponsible uses that do not involve addiction?
A: What’s much more common for clinicians than addiction is what has been called aberrant drug-related behavior. Behaviors like doctor shopping or frequent visits to the ED [emergency department], or increasing the dose during pain flare-ups without permission. Or taking an opioid to help you get to sleep at night, or taking it when you’re feeling anxious. Or in some cases using an illicit drug, like smoking marijuana on the weekend, without telling you.
A clinician who is trying to prescribe these drugs safely ought to be monitoring all of those behaviors and trying to work with the patient so that the behavior regarding these drugs is responsible—meaning take the drugs as prescribed.
Q: It’s not as simple as saying that opioids deliver a “high,” is it? What “benefits” do abusers get from the drugs?
A: There are studies that have been done that show that in the usual person—with no history, and no family history of addiction—the typical mood response produced by opioids is dysphoria, not euphoria. But in some cases, they might be driven by co-morbid psychiatric disease—they may have anxiety disorder and realize that these drugs produce some reduction in anxiety. Or they have a depressive disorder—these drugs were used in the 1950s as antidepressants before we had any real antidepressants.
Or the patient may have a co-morbid psychiatric disorder associated with impulsive drug use—they would take any centrally-acting drug, any drug that alters their consciousness, impulsively.
There are also people who have an addiction biology, and it’s profound. I talked to a physician who became addicted to opioids, and he told me that the first time he took an opioid, it was like he had discovered something very magical about life. He said, “I knew this was my substance, this was something that I needed.” With a single dose.
Q: What is the risk of actual addiction?
A: Most scientists who work in this area think that about 10% of the population in developed countries have the biological predisposition, the genetic predisposition, to potentially become addicted. Truly addicted. Which is a huge number, 10%.
Q: If a chronic pain patient passes your various tests and is a good candidate for an opioid, what happens then?
A: At the present time the professional community is telling doctors that they have two obligations whenever they prescribe a controlled prescription drug.
Number 1: To know the pharmacology so that the patient’s outcomes—meaning the pain relief they get, and the side effects they experience—those outcomes are optimal.
Number 2: They need to do risk assessment and management to ensure that the patient takes the drugs in a responsible way, and there is minimal risk of abuse, diversion, and addiction.
Q: What does that mean for the patient’s experience?
A: Every patient should undergo a comprehensive assessment and risk stratification. The doctor takes a history and then makes a decision: Is this person at high risk or at low risk of developing problematic drug-related behaviors?
The most accepted factors that put a person into a high-risk category is a personal history of substance abuse now or in the past, a family history of substance abuse now or in the past, or a history of major psychiatric disorder. And there are many, many other factors: Current smoking, history of physical or sexual abuse.
Q: Give an example of a high-risk patient.
A: A young man who injures his back at work and has pain for six months, sees a doctor, and the history reveals that the patient binge drinks on the weekend, uses marijuana three nights a week, and has a brother who has been through detox. If an opioid is being considered for that patient, then the structure of the therapy should be very defined and very rigid, it might include any or all of the following.
An opioid agreement that is used to educate the patient about responsibilities and consequences of bad behavior
A small number of pills prescribed
The requirement that the patient returns with the pill bottle so that a pill count can be done
The requirement that the patient gets urine drug screens periodically
A requirement that the patient gets a consultation with an addiction-medicine specialist
The requirement that the patient uses only one pharmacy, so that you can track what has been dispensed
Q: What about a low-risk example?
A: A patient 70 years old develops bad knee and hip pain from arthritis, and the history reveals no personal history of substance abuse, including no use of alcohol, no family history, and no known psychiatric disease—that patient has very, very low risk of developing problematic behaviors. For that patient, a structure might be to come back in a month and provide a phone call in the middle.
Q: Sounds complicated. Should chronic pain patients seek out a specialist?
A: Only about 5% of people with chronic pain ever see a specialist. This is a type of therapy that, for 20 years, people like myself had been promoting as needing to be done by primary care doctors.
Q: What advice do you give patients who are looking for possible opioid treatment?
A: I would like patients to think, “Opioids may or may not be appropriate. But I need to see a physician who’s comfortable with prescribing opioids and also knows how to do it in a way that’s safe and effective for me. When I go into that physician, I know that I’m going to have to be honest and let that person do a good assessment. And I’m going to have to provide my records to that person. If that means that I have to have urine drug screens, so be it. If I have to sign an opioid agreement, if it’s reasonable and educational, I’ll sign it. If I have to go and get treated by a psychologist at the same time and I can afford it, I’ll do it.”
There has to be a recognition that this is a controversial therapy that takes a lot of effort on the part of the clinician, and the patient has to not only adhere to the therapy, but also has to communicate and be willing to be monitored.
Q: Given all that, do you believe that opioids are underused in the treatment of chronic pain?
A: Absolutely. I’ve seen this controversy in the U.S. going back and forth for about 25 years. This is a pendulum that swings back and forth depending on how frightened people are of addiction and abuse, and depending on how much the advocacy community gets the word out about undertreatment.
There’s a whole political and social context here that is not based on any known science. And in the 2000s we seem to have the pendulum shifting toward more denial that the therapy can be useful, more reluctance to prescribe, more concern about regulation.
Q: That’s an unfortunate swing for those people who would benefit from these drugs.
A: No question. But I want to acknowledge what my colleagues would say, many of them—that 25 years of research has yet to show the evidence that long-term opioid use is effective for chronic pain.
There have been a large number of good clinical trials, but they’ve all been either short-term or in very selected populations, or didn’t measure all the issues.
But the bottom line is that we have about 9,000 years of clinical experience showing that they can work. And you also have a consensus in the professional community of pain specialists—not just in the U.S., but also in Canada and England and other countries in Europe. You have a consensus that has evolved based on the data that do exist and the observations that exist.
The real issue is, let’s stop arguing about should patients ever get opioids and start arguing about who should get them and how you prescribe in a way to optimize the outcomes.
Q: Of course, even when drugs work, patients don’t always take them.
A: In the past 20 years, there’s been all of these new modified-release formulations, so now there are once-a-day drugs, twice-a-day drugs, patches that last three days, all for the treatment of chronic pain.
So you would think that compliance would be easier because it’s more convenient, and in some respects that’s true. But we just did a little study here, which we haven’t fully analyzed yet or published, and what we discovered in our group was this: In almost 100 patients, about 50% were non-adherent, and the vast majority of that group was undertreating.
It raises questions: Why are they undertreating? Are they afraid? Or do they have side effects? Is it money?
The bottom line is, most patients are not out there acting like [drug addicts], most patients are pushing you to give less, or not taking everything you prescribe. They’re not interested in abuse, they’re interested in getting off this stuff!
The Social Security Disability program is a Federal program which provides assistance to people with disabilities. The program is administered by the Social Security Administration and only individuals who have a disability and meet medical criteria may qualify for benefits under the program.
The first step, once you decide you are going to apply for Social Security Disability, is to obtain and review the Adult Disability Starter Kit. The kit contains the following documents:
Factsheet – The factsheet includes the definition of disability and answers questions about applying for disability benefits.
Checklist– This is a checklist of information and documents to have ready for your disability interview or when you complete the online Disability Report.
Worksheet – The worksheet can help you prepare for your disability interview or complete the Adult Disability Report on the Internet. It lists information that Social Security will ask you and provides space to write down this information.
When to Apply
Apply as soon as you become disabled. Disability benefits do not begin until the sixth full month of disability. The waiting period begins the first full month after the date the Social Security Administration decides your disability began.
To be found disabled according to Social Security’s definition of disability you must meet the following criteria:
You must be unable to do any substantial work because of your medical condition(s). For example, in 2010, substantial work means earnings of $1000 or more a month. This amount may go up each year.
Your medical condition(s) must have lasted, or be expected to last, at least 1 year, or be expected to result in your death.
Your medical condition(s) must have lasted, or be expected to last, at least 1 year, or be expected to result in your death.
An interesting fact – studies show that a 20-year-old worker has a 3-in-10 chance of becoming disabled before reaching retirement age.
Where To Apply
Most Social Security offices do claims-related business by appointment. You can apply (“file”) for benefits in person or by mail or phone.
Self-Help Guide: Applying For Social Security Disability Benefits
You can apply for Social Security Disability benefits online by filling out the Social Security Benefit Application.
There is also an Adult Disability and Work History report you can fill out online.
If you prefer not to apply over the Internet you can apply over the phone by calling the toll-free number, 1-800-772-1213, Monday through Friday 7 a.m. to 7 p.m. EST.
You can also apply in person at your local Social Security Administration office.
Checklist For Interview
If you have chosen not to apply online and not to fill out the online Disability Report, you will be interviewed by phone or in the local Social Security office by a Social Security Claims Representative. The interview usually takes at least one hour. Make sure you have the following information listed on the checklist with you for the interview.
Original or certified copy of birth certificate.
If born in another country provide proof of U.S. or legal residency.
If you were in the military, provide the original or certified copy of your military discharge papers.
Your W-2 form from last year, or if self-employed your federal tax return (IRS 1040 and Schedules C and SE)
Worker’s compensation history.
Social Security numbers of your spouse and children.
Your checking or savings account number.
Name, address, and phone number of someone who can get in touch with you.
Fill Out Worksheet
Fill out the “Medical and Job Worksheet – Adult”. The worksheet helps prepare you for your interview or to complete the Disability Report online. To fill out the worksheet you will need:
Names, addresses, phone numbers of all doctors who treated your medical condition.
Dates you were seen by your doctor and/or dates you were treated at the hospital or clinic.
It’s helpful to have your patient ID number from each place you have been treated.
Names of medications you are taking, the reason you are taking the medication, and what doctor prescribed the medication. Some suggest bringing in actual medication bottles.
What medical tests you have had. You will need to know ehere you were tested, the date of the test, and who ordered the test.
Have medical records in your possession.
The jobs and dates you worked in the 15 years before becoming disabled.
Even if you apply online and fill out the Disability Report online, you will copy the information from the worksheet to the online form. So filling out the worksheet ahead of time is helpful.
Hours Available Online
The Disability Report online is available during the following hours Eastern Time:
Monday through Friday: 5:00 AM – 1:00 AM
Saturday: 5:00 AM – 11:00 PM
Sunday: 8:00 AM – 10:00 PM
Holidays: 5:00 AM – 11:00 PM
By filling out the Disability Report online, you have the ability to work at your own pace, stopping when you want, and coming back to finish later.
Points To Remember
Be prepared to explain in detail why you can no longer work and how your disabling condition has affected your daily activities.
Besides meeting Social Security’s definition of disability, to qualify for Social Security Disability benefits, you must have worked and paid into the program for five of the last 10 years.
What To Do After Receiving an SSI Denial Letter
The first step to take if you receive an SSI denial letter is to take a deep breath and try not to get too upset. Every problem has solutions and this too will resolve with just a little more effort on your part. If you have received a partial denial or a full denial of your claim be advised that the decision can be successfully appealed causing the Social Security, Supplemental Security Income (SSI) to take another, more in depth, review of your entire case.
The Reconsideration Process
The applicant must first request an appeal of the decision. The request must be made in writing. The Social Security has a special form that can be used for this purpose or you can submit a signed note with your social security number stating that you want to appeal the decision in your case. If the claim was denied for medical reasons you may even make the request for an appeal on-line. In certain cases, if the applicant was already receiving benefits, he may be able to continue receiving the benefits if he requests an appeal within ten days of receiving a denial letter. Generally, an applicant has sixty days starting from the date on the letter noticing him of the adverse decision to request an appeal of that decision. If the request is not made within the sixty day period the right to appeal may be lost.
The next step will be a Social Security complete review of your claim by an employee that did not take any part in the first decision resulting in the denial. The person will look at all the evidence currently on file and, if submitted, he will also consider any new or additional evidence you provide. If the appeal involves a claim of a medical condition or disability the case will be placed under a process called “case review.” Applicants appealing decisions not involving medical conditions can choose to have case review, an information conference, or a formal conference. Case review is a reconsideration process where Social Security does not meet with the applicant but only reviews the contents of the file and any new medical or documentary evidence submitted by the applicant.
Getting Legal Help
If you or a member of your family has received an unfavorable decision from the Social Security, Supplemental Security Income it may be helpful to contact a disability attorney to help to resolve the issues that resulted in the denial and move you forward to a more favorable decision on appeal.
My Name is Craig Silko. I have been suffering from LPHS since I was 12 years old. I was actually diagnosed when I was 17 because it took so long to rule out every other possible medical reasoning behind the constant pain and blood in urine. I have been treated with many medications but none actually rid the pain completely.
Under the advise of my first surgeon (Dr. John Marks, NYC), I went to a surgeon (Dr. Zelik Frischer, SUNY Stony Brook, Long Island, NY) to undergo a Renal Autotransplantation. Dr. Frischer performed the surgery in May of 2000 when I was 13 years into the syndrome.
He was still optimistic, even though it was most effective if performed before 5 years, and I agreed at this point what did I have to lose. The surgery didn’t go as planned and I had many complications. I really don’t want to relive that moment, so I am not going to write about it. The surgery ended up being a success for about two months. Two months of complete relief and I was in heaven.
It came back just as it started many years before that, this time only pain where my kidney was transplanted, right side-lower abdomen-just below my right kidney but in front. We thought that it could be my other kidney developing the condition but we didn’t want to take any chances with scoping, the so far symptom free, kidney. Till this day, now age 33, I do not have pain where my right kidney is, just in my lower abdomen in the transplant location.
I am still treated with pain management services, which my doctor (Dr. Robert Vincent, SUNY Stony Brook)is my angel. Since 1998 when I started going to him, he has developed a plan which keeps me out of the emergency room. On a side note, I don’t know how many of us out there who have gone to the ER have been treated like drug addicts and disrespected; due to the fact that LPHS sounds like a made-up disease.
I ended up filing many complaints about the staff of my local ER. I hope that many of you never had to go threw that. Well back to pain management.
I am able to work and live a somewhat normal, well my normal, life. My pain management Dr’s plan helps me get threw my day without the extreme pain but a liveable amount of pain. I am so use to it that I can ignore it. Its just when I get, what I refer them to as, attacks (Severe untreatable pain) that last sometimes a day to my longest of two months that it gets harder.
Believe it or not, I still work when I am like this. I treat it the best I can, because I know what it is. I do not do more than I can, I don’t go to the ER, I just wait it out. I guess to some my story up is I understand how everyone feels. I don’t recommend getting an Auto Transplantation unless it is your last resort, even then I still wouldn’t recommend it. My surgeon wont perform them anymore because he feels it not the cure all that it was suppose to be.
My one question I pose to any of you, Does anyone have any other ways they control the pain, or the anger that comes with the pain?
Is it impossible to have a healthcare system that is driven by profits to also be focused on inexpensive and permanent solutions?
When reports on ESPN this week revealed that some US Olympic Ski Team members left the country and went where they could use what is considered ìalternativeî treatments for relief of their injuries and pains, it once again elevated the question of why Medical insurance and workmans comp in the U.S. wonít cover procedures like that.
In many cases, these treatments prove markedly more effective than traditional therapies. The treatment called prolotherapy, used to strengthen weakened ligaments, is widely accepted and used in other countries with national health care systems, including Canada.
Prolotherapy has been considered ìinvestigationalî for 70 years by the Medicare board; insurance companies will cover it when Medicare decides to cover it.
The practice of prolotherapy is used by both medical doctors (MDís) and osteopathic physicians (DOís), such as Dr. Jo Ann Douglas of Colorado Osteopathic & Sports Medicine, to treat several different types of chronic pain. It may be the latest alternative therapy to hit the sports medicine scene.
Doctors are using the treatment successfully for tennis elbow, Achilles tendonitis, patellar tendonitis, back problems, and other common sports injuries. Prolotherapy is also effective in cases of arthritis, fibromyalgia, whiplash, and chronic pain in the neck, back, shoulder, ankle, and sciatica. It relieves disk problems unresponsive to more conservative treatment.
According to Dr. Douglas, there are approximately 600 licensed physicians in the U.S. that perform this procedure. ìProlotherapy treats the cause of the problem; that is, instability. We inject a solution into the ligament or tendon where it attaches to the bone, which stimulates the bodyís own healing response by creating blood flow to the area, recruiting immune system cells that clean the area, and construction cells (fibroblasts) that rebuild the tissues.
ìThis is the exact opposite of the current standard of care, which treats pain and inflammation with anti-inflammatories. Prolotherapy promotes the bodyís inflammatory process so that the body can heal itself. In most cases, commonly prescribed anti-inflammatory medications and drastic measures like surgery or joint replacement may not help, and often hinder or even prevent the healing process.î
According to Dr. Douglas, ìmany patients do not understand why insurance companies will not reimburse for this technique. In many cases it may save the patient from chronic pain management or surgery, which would save money for insurance companies and Medicare as well as treat the cause of the problem for the patient.î
The federal government hears issues from large special interest groups loud and clear. The drug companies, surgeons and chiropractors are heard; whereby the 600 doctors who perform prolotherapy are a very small voice in the healthcare system. In fact, they were not heard at all until Olympic Athletes went to Mexico to get prolotherapy.
Vioxx was covered by insurance, even though it had risks. Surgeons continually change their methods and the new surgery techniques are covered by Medicare and insurances. Secondly, surgeons use cortisone for temporary relief even though cortisone has been proven to cause ligament and tendon deterioration, which may only lead to surgery.
X-rays and MRIís do not always reveal injuries. The number of qualified doctors specifically trained to administer prolotherapy is growing. There are training programs at medical schools now that teach this technique, including how to properly diagnose these injuries.
Although medical doctors who do prolotherapy will continue to be few until more evidence accumulates, osteopaths like Dr. Douglas have a long track record with the procedure.
Each injection treatment varies in cost, ranging from less than $100 for smaller joints to several hundred dollars for larger or more complex joints such as those in the neck and back. Most people need 4-6 treatments ó usually administered in a series of injections three weeks apart ó to stabilize the joint
WHY ISN’T PROLOTHERAPY COVERED BY MEDICAL INSURERS?
Modern allopathic medical research demands that therapies be proven by double-blind methods. This means that neither the patient nor the physician know which therapy is used. For medications, the pills can easily be made to look alike, and a sugar pill used as a placebo is presumed to have no therapeutic value.
For procedures like prolotherapy and most surgeries, there is no adequate placebo. Cortisone cannot be used as a placebo because cortisone can only be injected 3 times a year; typically, prolotherapy requires 4-6 treatments.
The Medicare board wants more data to show the effectiveness of prolotherapy. Drug companies pay for research when it is profitable. They are unlikely to pay for research on prolotherapy because this would not be a profitable venture. In fact, drug companies and surgeons would profit less if prolotherapy would be more widely used, since fewer people would need pain medication and they could avoid expensive surgeries or complications from surgeries.
Dr. Douglas can be contacted through her Website (www.mycodo.com) which further explains this procedure.
Jo Ann Douglas, M.S,D.O.
Board Certified by the American Osteopathic Board of Neuromusculoskeletal Medicine
Colorado Osteopathic & Sports Medicine
I am currently on Prialt. I started the program for about 6 weeks. I am getting very discouraged because of the side effects. I was at the Dr. office today, they reduced the meds going into my pump. I dont want to stop the program, but the side effects are as follows: depressed, walking way off balance, my body feel terrible, the pain hasnt reduce at all, miserable to my family. hearing sound in my head. I spoke to the office and say they would decrease it for about 5 days, to see if the side effect go away. My question – has anyone been on prialt and does the side effects go away and the most importance question DOES PAIN NO AWAY. I have been in severe chronic pain for 8 years. I do have a SCS (spinal core stimulator) also. I have been several types of mediciation. Any one out there can put any lighting on this.
Iíve already indicated that the use of opioids is controversial in essentially all settings. Debate still persists about medicating terminal patients, so you can imagine how heated the discussion becomes for treating chronic pain, a setting in which there is no end in sight and where complaints often appear to be out of proportion to accompanying physical signs or x-ray findings. Regrettably, most of todayís cure-oriented physicians still do not understand chronic pain. Since it has only been recently that, stimulated by hordes of frustrated patients, a few physicians have even developed the courage to ask questions about chronic pain and opioids, it is not surprising that answers are still elusive.
This question is actually probably best regarded as two related questions: (1) are opioids effective in relieving chronic pain, and (2) if so, when (if ever) is their use appropriate? The bad news is that the ultimate answer to whether opioids are effective in the long term will only be answered with certainty with controlled clinical trials which have not even yet been proposed. Since it would be unethical to allow patients to suffer while awaiting this data, we need to be asking what is known that will help guide todayís treatment safely?
The good news is that there has been increasing experience with using opioids to treat chronic pain due to a variety of causes. While still not as reliable as a controlled trial, data from this experience can be cautiously applied to many of todayís patients with chronic pain. It appears that opioids effectively reduce pain over long intervals in a proportion of patients with chronic pain without intolerable side effects or problems with addiction. One key point here is that as long as the source of pain persists, pain can often be reduced but rarely if ever is it eliminated. Thus, if treatment is to even have a chance at success, patients must maintain realistic expectations, such as a 50% reduction in pain severity. Another key point relates to side effects: in fact, most patients will experience side effects when opioids are first started or their dose is changed, but when medications are started in low doses, are only gradually increased, and with reliance on long-acting formulations side effects can usually be resolved or minimized. Most patients will continue to experience low level side effects as long as opioid therapy is ongoing, but this may represent a reasonable tradeoff if pain is severe. While opioids may produce dangerous respiratory depression when used erratically, this almost never occurs with carefully supervised use. Nausea, sedation and itch are common at first, but usually resolve over time. Constipation is an ongoing difficulty that can and must be prevented with activity, diet and regular gentle laxative use. Because fatigue so commonly accompanies chronic pain, most patients cannot tolerate high doses of opioids, and thus must be satisfied with partial relief. In other words, while opioids are helpful in some cases, they donít eliminate chronic pain: patients continue to have ongoing, but lower grade symptoms, with some good and some bad days. These drugs are not a panacea, but simply represent one of the many tools at our disposal to help make chronic pain more bearable. Moreover, opioids are usually not a first line treatment, and work best when integrated with other drug treatments like antidepressants, anti-inflammatories, muscle relaxants and anticonvulsants, as well as with non-drug therapies like physical therapy, distraction and relaxation training.