Editor’s Note: John Sandherr is a 58-year old man who lives near Pittsburgh, Pa. He has suffered from chronic pain for thirty years and has undergone 10 surgeries. . He is an arachnoiditis survivor and is an outspoken chronic pain advocate. He credits his wife Deb for helping him survive the past thirty years. We’re glad he has added his voice to the National Pain Report.
On August 8th just over 2 months ago I went to my monthly visit to see my Pain doctor. It was like any other appointment that I’ve had for over 15 years. Every 28 days I would go in to get my pain medication and get a short but thorough exam from the Dr. or by his Physician Assistant. Each month was routine for me because of all the documentation that supports the severe pain I suffer with.
There was nothing routine about my visit on that day – as soon as I walked in I was told by the receptionist, “Today is your last visit, I need you to sign this paper and you will be given your medical records. As of August 12th Dr. Frank will no longer treat pain patients, you need to find a doctor and fast.” I must have looked like I was hit by a truck and then a train because the girl said, “are you OK?” and I said, “NO, will you be giving me the name of a doctor that I can follow up with?” “NO” was all she said.
I took a seat and completed the forms I was given and returned them to the girl, she then handed me a large yellow envelope that had 186 pages of office notes that went back 6 years. I didn’t ask but I assumed that 6 years is the required amount of time to conform to the guidelines.
After I went back to my chair I was lost and broken and as I sit and write this all of those feelings come rushing back, my mind is blank but racing, my breathing is slow and then fast, my heart is pounding so fast I can actually hear it. I remember – three cleansing breaths – i can quiet my racing heart but for just a few minutes.
After a 10 to 15 minute wait Dr. Shani called my name, she could hardly look me in the eyes. I sat across from her in the same chair I always have but there must have been a look of desperation mixed with fear etched into my face as Dr. Shani said to me, “John you look terrible” and I came right back with, “I can’t believe this is happening.” She didn’t know what to say while I sat there with tears that started rolling off my lower jaw. “I’m scared to death” I said, “and I don’t know what I’m going to do, no doctor is going to prescribe what I’ve been taking for the last 10 years. I’m done.” She couldn’t disagree and I knew it.
Dr. Shani spent the next 10 minutes giving me a pep talk – I gave her credit for trying and for caring. I had regained what composure I had left and asked Dr. Shani “why is Dr. Frank closing the pain clinic”? The answer came with no hesitation as Dr. Shani looked me right in the eye and uttered “he wants to spend more time in the Operating Room and more time at the Addiction Clinic he opened last year”. That statement left me thinking, I know Dr. Frank is a workaholic, he has fewer pain patients but that was due to those that got booted for failing a drug test or requesting more medication much too early. I was Dr. Frank’s oldest or longest patient, no one else had 15 years of treatment at the clinic, just me.
Glued to the chair, I knew getting up meant never coming back. This wasn’t easy, just 6 months prior I had asked Dr. Shani if the anti-opiate campaign was something I should worry about, was Dr. Frank going to close his doors someday soon. Shani told me not to worry and that Dr. Frank was a well established Dr. in the field of pain management and the patients had nothing to worry about, I needed to hear that. It seems that no one could foresee all that would happen over those next 6 months and I felt like I should have been ready for it, I read about this situation while on The National Pain Report and I never thought it would happen to me.
With nothing left to do and thinking about what was next, I had but one last thing to ask Shani, “can you please give me the name of a Dr. I can call, a Dr. that might be able to prescribe anywhere near the dose I’m on and have been on for over 10 years,” Shani said, “I can’t do that John” so I said, ”Okay, how about off the record?” She wrote down three names on a small piece of paper she had ripped off her calendar and slid it across the table to me. I asked if these Dr’s would be comfortable keeping me on my current dose and I already knew the answer to that question (I’m on over 350 mg of OxyContin & OxyCodone, daily) – “No, you will need to wean yourself down over the next 60 to 70 days, as much as you can – you can do it John”, that was her reply.
Shani slid the prescriptions across the table and said – Good luck. I looked over the medication, everything was there. Fifteen years of what I believed to be good successful years had come down to 12 sheets of paper and little hope.
Medication, I now had enough to get me through the rest of the year, if I cut back starting the next day, plus it gave me more time to look for and find a Dr. to treat me.
I just couldn’t walk out of that office without making some kind of a statement. I walked over to Shani and first gave her a big hug for taking such good care of me for so many years and then with my hands on her shoulders I looked at her and said “I can reduce the medication and I will do my best, but no matter what, I’m still going to end up in the Hospital and it won’t be for a short stay. It’s not the reduction of the medicine that worries me, it’s all that pain that will only get worse and that’s what worries me the most, I’m afraid I won’t be able to take the pain.” Shani, a short thin woman from India looked up at me with sad eyes and said, “I know John and I’m sure you will.” That reply left me feeling extremely helpless and fearful but it’s that kind of attitude that won’t do me a lick of good.
Out the door I went and as I got into my car I kept thinking – my pain is real, I’m not a drug addict, there is little hope of finding a Dr. to treat me, my condition is progressive, I’ve tried nearly every pain modality medicine has to offer and the one thing that allows me to be a productive member of society and ease my suffering is Opiate Pain Medication. Every day I read a news article that says a vast number of Americans believe that there is no place for opiates to treat any kind of pain. Now I hear that many are calling for a complete ban on opiates and I wonder if those people have ever had the need for a pain medication. If opiates are banned, what will people use in their place? I’m not sure if they have given that any thought and they won’t until they are in severe pain.
Fifteen years is a long time, so, Dr. Frank became very familiar with my medical issues and my personal issues, he once asked me, “how can you even walk when according to these test results you should be in unbearable pain and I can see that on your face and when you squirm in that chair yet you always seem to have a smile on your face.” I would say, well I can smile or I can cry but I know I’m better off than the patient I just saw in the waiting room, sitting in a wheel chair with no feeling from the waist down and still in pain. There will always be a person that is worse off than me and that keeps me going.
Less than a week later I was at my surgeon’s office for a follow up visit with Dr. K an Orthopedic specialist I’ve been seeing for over 12 years. I’d developed drop foot in my right foot; the left foot went about 4 year prior. After only a few minutes Dr. K came walking through the door. He said, “John Sandherr, man are you screwed.” He said, “I spoke to Dr. Frank the other day and he told me he was closing his pain clinic.” He told me the DEA was making it almost impossible to treat pain patients with Opiates so he’s going to stick with his addiction clinic. “What are you going to do,” he asked me. “I know what you’re taking and it’s a big dose, but you need it John.” He said, “I could operate on you and you might feel better for a few months, but after that you will be worse off because of all that scar tissue you have from the other 10 operations you’ve had…or is it eleven. I feel for you brother, If ever there was a patient that needs to use pain medicine it’s you.” Dr. K went on to tell me about a good friend of his that had a run in with the DEA over a single prescription he had written for a patient, the standard 7 day supply of Percocet following knee surgery. He was told that some of the pills wound up in the hands of someone other than the patient and for that reason he is now under investigation.
I hold no grudge against Dr. Frank for closing the Pain Clinic and I know it was not a choice he made purely for money. What angers me is we now have a government telling Dr’s what they can or cannot prescribe for a patient that has not demonstrated any sign of drug addiction. People that are in pain and depend on opiates for relief deserve to be treated with what helps them the most. Just a week after my last visit the Governor of Pennsylvania signed a new bill that will almost force Dr’s to comply with when prescribing opiates. With that and the new “Monitoring System” the state just put in place, Dr’s now have a difficult and time consuming job and what they really want to do is help those in pain.
When I found out that – Bain Capital a Hedge Fund company – are investing in substance abuse for profit it all made sense. I was working in the Mortgage Industry when the housing market collapsed; there were Hedge Funds for investing in housing failure. Many became multi-millionaires overnight.
It was Dr. Isben that said “follow the money” and I’ve started to do that. The money is invested heavily on addiction, not helping people in pain. Can we convince enough of the right people that the real facts have not been revealed?