CPer

Hi all,

I’ve been reading the posts for a few days and this seems like a “safe” place to get good pain management advice.

My story: I’m a 44 year-old male from Ohio. I’ve had “mild”spastic hemiplegic cerebral palsy from birth. This means that my left side is markedly weaker than my right, and the large muscles in my left arm, leg and back are spastic (I cannot straighten my left arm or leg, and I have scoliosis—which is the major source of my pain). I work full time as a project manager for a government agency, I’m married and have three kids: 18, 9 and 4.

I never experienced any sort of pain associated with CP until 1995. I was a world-class “disabled” cyclist and was in training for the 1996 Paralympics in Atlanta when I ripped my left Achilles tendon in two. Post-op, my ortho surgeon prescribed 5/250 Lortab every 4 hrs PRN. During recovery I had an incident where I was driving, turned my head to check traffic, and my head “froze” in the twisted position until I could drive myself to the ER. A CT scan demonstrated mild cervical stenosis. Within two weeks I also experienced stabbing pain in my left rhomboid (upper back) muscle. Tests showed that scoliosis was not only causing more stenosis down my spine, but the “spastic” muscles were beginning to tear from the increased tone caused by training. I rode my bike for the last time in October 1995.

I exhausted my “supply” of PT visits paid for by my insurer and was placed on a regimen of Zanaflex, with the 5/250 Lortab continuing. The Zanaflex allowed sleep, but did nothing for pain. The physiatrist ordered a TENS unit, which proved to be totally ineffective, even though I gave it my best shot for four months. Later, I discovered that TENS is contraindicated in my type of neuro disorder. :-( With concurrent visits to the ortho and physiatrist, I started Fentanyl patches (don’t remember the dosage). That was short-lived as I had the same “contact dermatitis” with the patch adhesive as I had with. The analgesic properties of Fentanyl were lost on me as well. I was temporarily referred to a PM doc in Central Ohio (who has subsequently lost his license to practice for reasons of bad patient management, bad records management and the discovery of cocaine in his back seat during a traffic stop). His was my first experience with facet joint injections. Obviiously the guy was a quack, but I had been referred. How was I to know his rep?

Anyway, back to my GP, who suggested OcyContin 40mg BID, nothing for breakthrough. After the “big scandal” broke in the media regarding OC abuse in West Virginia and Ohio, he got anxious and referred me to another PM doc. This new fellow, who barely spoke English, assured me that HE WOULD FOREVER AND EVER relieve me of any and all pain I would ever experience from that point forward (sarcasm, yes).

After a series of ineffective FJ injections, nerve blocks, you name it, we both got fed up with each other and I began seeing another doc in his practice. This guy was articulate, empathetic and completely trusted my own assessment of my pain. I thought I’d finally found who I needed. He ordered a full spinal CT. Lo and behold, I now had “moderate” bulges and stenosis from L1-S5.

I told him that 40mg every twelve wasn’t cutting it—I was getting “breakthrough” at eight hours. We went to 40mg OC TID and 5mg Roxicodone (30/month) for “breakthrough”. This was in October of last year. Now I’m finding that eight hours is too short and I blow through 30 tablets of 5mg Roxicodone pretty quick. Most mornings, if I have meds available that month, I have to “bolus” with 15mg of Roxicodone every morning just to be able to get to work.

I have a close friend who is a pharmacist, and, of all things, an “addiction specialist” who monitors my meds with me. His feeling is that the “disease” is just following a natural progression and that I should get the PM doc to up my daily dose to 180mg OC (3X60) and get a larger volume of meds for breakthrough. My questions:

1) Does this seem like a reasonable “ramp up” of dosage over the time-frame stated?

2) I wrote a letter to the doctor two weeks prior to my next appointment, outlining the situation and giving my pharmacist friiend’s recommendation and phone number. Does this appear like “drug seeking”?

3) Do any of you who visit PM clinics find that they are over-booked with patients to the point that the doc can only give you a couple minutes?

4) Finally, has anyone ever had experience with using dextromethorphan (the active ingredient in Robitussin cough syrup) to assist the pharmacokinetics of opiate pain relievers?

Thank you all for your help and time!