I have to write one more story about my little surgical/medical excursion with melanoma. And there is a chance for you to tell me about your surgical pain experiences. Below is a neuropathic pain scale to use to assess your own pain levels at various times of the day. This might be useful to your medical care team. Read on below to learn more about my experiences and medical studies that sometimes document poor postsurgical pain control.
I did absolutely great after the surgery; took oxycodone doses on time for the first day, and by the second morning home, I changed to Tylenol. Even the Tylenol, I only took for that second day. By the third day I was on nothing for pain and feeling fine. I was limited because I was instructed to keep my arm up most of the time but that was my only limitation. Then about 10 days after the surgery I started getting strange sensations in the arm, in a several inch circle around the lower half of the incision. I couldn't keep my arm down at all because I started feeling pressure and tightness, and heat, and a sense of strong discomfort in this area. Slowly these sensations became worse so that I had to sit with my arm up again and I became more uncomfortable and more limited in what I could do than I was several days after the surgery. I tried an ace wrap and that helped some but it would slide around and pull on the arm tissues and make the symptoms more noticeable. I went back at 3 weeks to get the sutures taken out. I told the surgeon about my symptoms in detail trying to describe them as I have above. I told him that I had a similar pain syndrome occur after a breast biopsy many years ago and a nerve drug called Tegretol took it away in a few days. He said that my symptoms were probably just due to swelling, but he suggested I get to see a therapist at the hand clinic. He wrote "scar mobilization and desensitization" as the orders on the slip to the therapist. But when I described where it hurt to her and showed her how I could move the scar itself around and rub on the scar without any problem, she didn't know exactly what to do for me. She tried some ultrasound therapy which in one area irritated the arm more. She did give me some silicone gel sheets to put on the scar to soften and flatten it and that worked well. Also she gave me an elastic sleeve to wear on the arm over the scar and that did help me keep the arm down a little longer before it would start to burn. But the desensitization rituals she showed me of massage, rubbing with a towel and vibrator use over the sensitive area didn't do anything to help and was quite uncomfortable though I was a good patient and did try them. Meanwhile I had spoken with my general surgeon son, and he asked if I was on either of two drugs that he uses for just this purpose: Lyrica (pragbolin) or Neurontin (gabapentin). He said he uses these drugs quite often to treat these types of nerve damage symptoms. He said that some of his surgical partners even use the medication preventatively right from the time of surgery with good success.
I researched on the Internet and found articles that support the use of these drugs for postoperative neuropathic pain and proof that they reduce narcotic use and seem to prevent this type of pain development. There are all kinds of elaborate theories for why these pain syndromes develop. One postulates that the nerve firings recruit more pain nerves in the spinal cord and even the brain until there is a distribution of the pain even to more distant points from the surgical injury. Many people then go on to develop chronic pain syndromes that become more and more difficult to treat. I could identify with that myself both times I have had this problem. With the strange discomforts in the arm or chest wall like last time, I would catch myself grimacing with my face. Similar muscle contractions were occurring in my shoulder and neck muscles and then pretty soon the muscles are aching just from being tightened in discomfort for long periods of time. Now pain messages are coming from sites distant from those touched by the surgeon. Tense shoulders and neck muscles lead to headaches. A general sense of hopelessness and depression creates an inability to move, exercise, eat, or take an interest in usually pleasurable activities. Then sleep disturbance can enter the picture worsening all of the above. I could see this cascade starting to develop in my own situation. Therefore, the idea is to catch the neuropathic pain early before this cascade of events has gotten started and becomes habitual.
I called the surgeon 1 week after the sutures were removed and told him I was no better, perhaps even slightly worse. I received a messsage back that as far as he was concerned I could go on a Tegretol like medication but I should call my primary care doctor to get the prescription. Apparently he was not comfortable prescribing these kind of drugs. So I made an appointment with my primary care doctor and saw her today. Indeed she was willing to prescribe a newer version of the Tegretol that had worked for me, one with fewer side effects. So I started this medication today. We will soon see if it worked as well as last time.
All of this led me to research several medical articles on the Internet about treating post surgical pain. First I learned that several medical articles indicate that acute postoperative pain and then persistent pain after the acute pain should have remitted occur and are inadequately treated. An article in May, 2006 Lancet quoted that between 10-50% of post surgical patients have persistent pain beyond that of the acute surgical injury. And in 2-10% of those people, the pain is severe. These persistent pains are attributed to neuropathic pain with mechanisms similar to that I have described above.
Another large (1299 patients) and well conducted survey following hysterectomy found that 1 year after surgery 32% of the patients were still experiencing (chronic ) pain and of these 15% did not have any pain beforehand. Of patients receiving spinal anesthesia, 15% had pain at 1 year compared with 37% receiving general anesthesia. Using a pain relieving model that extends for 2 weeks after the surgery, this incidence of chronic pain was reduced from 7% to 1% of patients in another study. So chronic pain after surgery is a common problem. It seems to be influenced by the type of surgery, whether there was pain before the surgery or not, presence of other risk factors such as diabetes, and other history of neuropathic pain, and even genetics. There seems to be a gene which codes for a lower tolerance of pain and having that gene allows manifestation of surgical pain to become expressed to a greater degree in those individuals.
One other interesting question arose in my mind during my surgical experience and since. Many of you readers may have been asked by various members of the medical profession to rate the level of your pain on a scale from 1 to 10. Most of us whether with medical background or not have no idea what these different numbers might mean. I would venture to guess that if there were a way to measure objectively that pain, individuals would still cite a range of numbers for that same level of pain even if their pain tolerance were the same. So I researched the pain scales being used and found that there are indeed ways to make these scales more representative of the actual pain being experienced. Following are two methods to make these pain scales representative of the pain being felt. The first is descriptions of each pain level on a 1 to 10 scale. The second pain scale gets away from using word descriptions and uses simple facial features that might show the level of pain and would ask the pain victim to point out the face that represents his/her pain. Using this 1 to 10 scale I would say that my current chronic pain is mostly in the 2 and 3 level. Occasionally after having my arm down for a while, it reaches 4. When I am sitting with my arm propped up on pillows level with or higher than my heart, the pain level is usually 1. So not severe, but enough that my quality of life is affected and my daily activities are reduced.
The Pain Scale in words:
0 -- Pain Free
Mild Pain - Nagging, annoying, but doesn't really interfere with daily living activities.
1 -- Pain is very mild, barely noticeable. Most of the time you don't think about it.
2 -- Minor pain. Annoying and may have occasional stronger twinges.
3 -- Pain is noticeable and distracting, however, you can get used to it and adapt.
Moderate Pain - Interferes significantly with daily living activities.
4 -- Moderate pain. If you are deeply involved in an activity, it can be ignored for a period of time, but is still distracting.
5 -- Moderately strong pain. It can't be ignored for more than a few minutes, but with effort you still can manage to work or participate in some social activities.
6 -- Moderately strong pain that interferes with normal daily activities. Difficulty concentrating.
Severe Pain - Disabling, unable to perform daily living activities.
7 -- Severe pain that dominates your senses and significantly limits your ability to perform normal daily activities or maintain social relationships. Interferes with sleep.
8 -- Intense pain. Physical activity is severely limited. Conversation requires great effort.
9 -- Excruciating pain. Unable to converse. Crying out and/or moaning uncontrollably
10 -- Unspeakable pain. Bedridden and possibly delirious. Very few people will ever experience this level of pain. It may cause unconsciousness.
It is interesting to read all about these items while being affected by the problem oneself. We will see if the Tegretol nerve drug does anything for me this time. I am hopeful it will act like it did in the past.
I am very interested in any of you who have experienced persistent post surgical pain extending out beyond 14 to 21 days after surgery. I would like to know if it had the characteristics of neuropathic pain that I described. And I am interested in how it was managed by your doctors. Send me some comments.