Thursday, November 01, 2007

A Chronic Pain Sufferer's Rebuttal

Dear Ms. Johnson,

Your recent article dated, Monday August 27, 2007 did not cover half of the problems people with chronic pain face in South Carolina.

I have degenerative disk disease caused from radical chemotherapy and radiation treatments needed to save my life from cancer in 1983. My lower spinal cord (the area mostly affected by the radiation) has been slowly disintegrating to its current state.
There are no procedures, no surgeries, and no treatments of any kind to stop the disintegration or to strengthen the spine. All that can be done is to limit the amount of pain I must deal with on a daily basis.

When my husband was transferred here in 2003, we had no idea of what area doctors would be like. I asked my doctor in Virginia if he could give me a reference to a local doctor and he told me he was not aware of any pain clinics that could treat me. He advised me to find one once we got down here and he would send the referral letter. In the meantime, he gave me my regular prescription of a 3 month supply of Methadone and a 30 days supply of OxyContin. The Methadone was a maintenance drug that helped me keep the pain level down. They did not make the pain go away, nothing can, but the Methadone made it tolerable. When the pain got out of the box and the Methadone could not control it, I used a small, 5mg pill of OxyContin for breakthrough pain. I was allowed a few of these a month and they were all I needed to help me put the pain back into the Methadone box.

We tried for months to find a doctor to help me. My pain meds I brought from Virginia had run out and I was experiencing pain levels of 8-9 (on a scale of 1-10) almost daily. I was in a wheelchair most of the day and in bed for the rest.  I called and checked every so-called pain clinic in the state of South Carolina. I went in for several appointments for review. I was called a "Drug Seeker" by a local doctor who refused even to look at my medical records because when she asked me what I wanted from the visit, I told her the truth. I needed the appropriate pain meds for me to gain a quality of life. She was very hostile with us. 

Another local doctor who, after being told I cannot have a steroid injection because I had experienced steroid injection sickness in the past told me, "You will not experience it with my steroids." Wasn't he listening? I got so sick from having a steroid injection into my spine that I wound up in the emergency room getting fluids and a phenergen push. Is his steroids special or something?

After nearly 14 months of trying to find a doctor or a clinic, I searched the web for alternatives. I found that a company called Medtronics makes something called an Infusion Pump. This pump sends pain medicine into the spine to help keep the pain down.

Sounds good doesn't it? Thanks to people like the US state Attorney, the DEA and drug watch dog groups across the country, there is one doctor in the whole of SC who does the infusion pumps and he was booked solid. We waited until we could get a new patient appointment and then we waited another year before he was able to do the surgery. During that time, I considered suicide on several occasions. I even went as far as getting my affairs in order and making sure my husband knew the location of important papers and files. I finally had the surgery and all was well until the medicine in the pump began losing its effectiveness. There are certain things a pain doctor must look for when maintaining these pumps and we are not sure if it was being done. Plus there is the fact that a breakthrough medication should have been given to me for when the pain overwhelms the pump, which it has done on numerous occasions.

We understand that our doctor is very busy and he has mentioned he has nearly a thousand patients with new ones needing surgeries monthly. He is overworked and understaffed, plus there is the fact he has moved his practice away from Charleston. He is now a 2 hour drive for us. We have reported last year that the pump was not working as well and we had yet another set of hoops to jump through. After doing the jumping, the request for different medicine was lost and we had to go through it all again.

To say the least, we are at our wits end.

We contacted MUSC's pain care people. My primary care physician referred us over there. We got an appointment to a neurosurgeon. We showed up for the appointment only to be turned away by a nurse stating that the surgeon was not willing to take on my case. I asked to be referred over to the pain clinic itself only to be told that I needed to be referred internally and my doctor was not on staff. I then wrote a letter to the head of the pain clinic at MUSC begging him to see me. I never got a response of any kind. Not even a letter telling me that they had received my letter.

I have been so burned out from the constant calls, appointments and tests that I finally turned my problem over to my sister in Philadelphia who works in the medical field. She took over the calls to get me into another doctor. Hopefully, it will be a doctor who is no so overworked and who doesn't have an incompetent staff.

She called every listing for a pain specialist on the Medtronic's site to no avail. So many pain clinics have either closed up shop or simply do not support the infusion pump. She finally contacted the American Pain Foundation. They gave her the name of a clinic in Atlanta, Georgia.

We have no recourse; we must travel the 4-5 hours down to Atlanta to see this doctor. So far, the response from the Atlanta office has been great. They sent me all my forms, answered all my questions about the pump and breakthrough meds. The nurse I spoke to said that they have several patients from South Carolina who come to them for their pain care. We leave early on September 5th for my first appointment in Atlanta. With any luck, I should come home with a better outlook for the next few months, if not I will be just another pain statistic for South Carolina.

While anti-drug programs and people who have no idea what living with daily pain is like make the rules and laws, those of us who have the pain must pay the price for their ignorance and fear. Chronic pain sufferers are not drug abusers. We just want to feel better. We do not sell our drugs because we need them so desperately. We are not people who go to the street corner to get our drugs. We want to be able to have sensible law enforcement that will not arrest us for getting a prescription filled. We want to be able to go into a drug store with a prescription and not fear being arrested because someone else judges us to be abusers.

I was truly disappointed by your portrayal of managed pain care in SC because honestly, it is simply a disgrace.

I will be happy to answer any questions you may want to ask a real chronic pain sufferer at this phone number xxx-xxx-xxxx or you can email me at

Please feel free to call my sister in Philadelphia at xxx-xxx-xxxx. She will give you her opinion of SC managed pain care.

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