Post surgical stories

     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.

The face pain scale.

     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.



   

Hoping for the Best, Worrying about the Worst.

Tomorrow I go to have definitive surgery for my melanoma. If you have a strong mental constitution read on to find out my mental ramblings during this time.
 I am scheduled to arrive at Froedtert at 6:30 AM when I will be checked in for Day Surgery. Then I have an appointment at 8 AM in Nuclear Medicine where a radioactive protein will be injected into my melanoma lesion on my arm along with methylene blue which is a dye. Then I am told that it will take about an hour and a half for these substances to migrate up my arm from the lesion to the lymph nodes under my arm. I am not sure if they follow this migration with a probe or detector or whether they take nuclear images to follow it. I will know more about this after it is all done. The anesthesiologist called this afternoon to get my medical history from me personally; he has my preop and all my preop labs in front of him. He told me to hold all meds except to take my Bystolic (a beta blocker) and the 10 mgm of prednisone with just a sip of water before I leave. I am also to take only half my usual dose of Lantus the night before and no short acting insulin the morning of the surgery. He explained the anesthesiological procedure carefully to me. My surgery is scheduled for 10 AM. I will get undressed, be put on a gurney, and an IV will be started by an anesthesia resident. Then I will be wheeled into the operating suite and a mask will be put over my face with lots of oxygen. I will be put to sleep through a medication injected through the IV. Then when I am asleep I will be entubated and monitored closely throughout the procedure. He told me that they would probably be checking blood sugar about every hour during the surgery and recovery times. The surgery is scheduled to last 1 1/2 hours. Then I will be awakened and extubated when I am breathing on my own, and moved to recovery for about 1 to 1 1/2 hours. After that I will be sent to Day Surgery to further recover for about 1-2 hours. So I will probably not be released until mid afternoon.
     This afternoon, after a call from Freodtert OR Nursing to confirm that this is all to take place tomorrow, from the anesthesiologist, and from the surgeon's office to confirm that everything is ready to proceed, It is difficult to put this upcoming procedure out of my mind. I have never had a general anesthetic before so this will be a new experience. It brings to mind the spiel that a neighbor and friend who was an anesthesiologist used to present at parties. He would pretend that he is doing a preop visit to a patient in the hospital the night before their big surgery. At that time there were very few outpatient day surgery procedures so he was usually visiting the patient in person unlike now when this is all done over the phone. This effect of his spiel in person was highly impressive for party guests but it is not very effective when now years later I am going through with a general anesthetic procedure. Now there is nothing to laugh at. His spiell went something like this:
     "Hello, I am Dr. Smith. I will be your anesthesiologist during tomorrow's surgery. I must get your medical history and will be asking about 100 questions about your health history and various symptoms that you have. We need to know all the answers to these questions because you life will be very delicately in my hands during that surgery tomorrow. We will be monitoring you very closely because lots of things can go wrong during anesthesia and surgery. We could have trouble helping you breath; you could have bleeding during the procedure or afterwards, you could react adversely to any of the many drugs we need to give you, you have an increased risk of stroke, heart attack, and other major medical complications during anesthesia and during the surgery. Our tube that we place in your throat could cause damage to your teeth, tongue, throat, voice box, and breathing tube." (Nowadays  and in reality I can vouch for the anesthesiolgist who I just spoke to and he said all these things, not quite in this blunt a fashion and he interspersed with multiple statements that these complications are all very rare now adays with the degree of monitoring that is done during modern surgery. But he said them). But Dr. Smith would have gone on: "Basicly what we will be doing is putting you into a coma utilizing several drugs and we hope and plan that it will be a reversible coma and that you will wake up." How would you like to sign up for this after this spiel? Scary isn't it? Well now that I am going through this tomorrow I can't help but remember this party stunt carried our frequently by our neighbor.
     Unfortunately, also this afternoon with my mind on my disease, I have  been reading on the Internet about melanoma, its staging, the characteristics of melanomas that are high risk to return, and what can be done to prevent such a recurrance. I have learned that treatment for melanoma that gets away from the original lesion is very inadequate. Normal chemotherapeutic agents don't work very well, and even radiation is not very effective. There are sometimes indications to use a drug called interferon which is a body product that is artificially produced and injected daily at first and then three times a week. This treats the cancer cells with your immune system. This substance is like the body product that occurs with flu illnesses and so it produces flu like symptoms and in the large doses needed tends to be very very toxic. Many people can not take the full dose due to the severe side effects and symptoms, liver toxicity and general toxicity. It is given for a year. And still with all that there is controversy in the studies whether it really helps survival. There seems to be some indication that disease free intervals are prolonged by maybe 9 months or so. Wow that isn't very much! This means that if I have a high risk melanoma -- thick in original depth which we can't even determine in my case, or having already spread to the local lymph nodes (which this surgical procedure is designed to determine) -- I have to decide whether to make myself sick for a year to try to reduce my chance of having metastasis and local recurrances or I do nothing and just take the chances that the disease will metastasize in which case other treatments are not very efffective at all and you die. Really bad idea to read all this this afternoon  before my surgery though being a doctor I knew some of it anyway.
     I am still vacillating between hope for the best, believing that this lesion isn't all that big and so it shouldn't have gone anywhere else in my body, and then the fear that it has already spread. One tends to arrive at a state of mind that you are prepared but hopeful. But this state of mind is very fragile and it doesn't take much to start a spiral of dread again. For example, my surgeon had said that we would decide on a referral to an oncologist who would recommend regarding the use of this interferon -- we would decide on this after my surgical results were known in a week. We would then know if the tumor had spread to local lymph nodes which makes it a high risk that it will recur elsewhere. But I received a phone message while we were gone on our trip from the Cancer Clinic at Froedtert Hospital that said they had received a referral from my surgeon that he wanted me to make an appointment in follow up with the oncologist. That scared me! Dr. D had said we would decide about that later but now he has made a referral. Does he know something I don't know? Does he already think that it has spread? Seeing an oncologist puts this in a whole new level of concern. No longer is this just a shallow skin lesion that needs removal and will be cured, with sentinel node biopsy being done just for safety; an appointment with an oncologist would be cancer follow up. I am tipped off my fence and my fragile positive state of mind is destroyed for a while. I need time and have to build up my dose of hope again to get through the next week of waiting for the test results. Wow, this is shitty!!!

Where do I begin? A diagnosis of malignant melanoma!

     I am engulfed, embroiled in a universal experience and want to write about some of the events and the overwhelming feelings that become involved.

     Ten days ago I went to a dermatologist about a lesion on my arm. It had been there a long time and had at times been scaly, but then in the last couple months, it had developed some projections in its profile and the edges had become rolled. I knew the latter was characteristic of basal cell carcinoma of the skin which is a cancer, but a low grade one which does not usually spread elsewhere but can destroy normal tissue locally. There was no pigment in this lesion; it was a reddish pink. I knew it needed checking and probably removal. I went in and even the dermatologist was fooled. She thought also possibly a basal cell or a squamous cell carcinoma or lichen planus. She did not suspect melanoma and she did a shave biopsy. That is a no-no if you are considering melanoma because this interferes with the calculation of a depth of the lesion, information which is important in planning how to proceed with treatment. Well, surprising all of us, on Wednesday, 3 days ago I got the call from the dermatologist that she had bad news which she apologized for but I had a malignant amelanotic (without melanin pigment) melanoma. So now it is Wednesday night and we are due to depart on a 3 1/2 week trip on Monday -- 5 days later. The path report says the biopsy specimen had cancer clear down to the base of the biopsy and to the edge of the lesion in several places. So I still had the cancer on my arm. The dermatologist had told me that a new portion of the pathological report rates the mitotic rate of the tumor ie the number of cell divisions per mm squared. If less than 1 it is a lower risk lesion; if greater than 1 it is a higher risk lesion and very new changes to the classification of melanoma takes that into consideration also in determining who might need a further diagnostic test ie the sentinel node biopsy. My mitotic rate was greater than 1. So now I have an inadequately removed cancer still on my arm which has some high risk characteristics. Now what? A list of questions began to run through my head and my husbands. Should we cancel our trip that had been planned for 8 months? Is it safe to travel with this cancer still on my arm and to further delay definitive treatment. Should I push for a sentinel node dissection? Should we do something to try to establish the depth of the lesion by a small re biopsy or should I have the wide excision of the lesion done before we go on the trip. Which doctor should I see?
     I began calling everyone I could find to try to begin to answer these questions. Two of the surgeons that I have worked closely with as a colleague over the years were out of town at conferences. Another third surgeon who is a close friend was not available by phone. My own internist is out on medical leave. I tried to get ahold of a plastic surgeon in town who trained with my surgeon son to see what he could tell me. He was supposed to call me back. And I was trying to get ahold of my son of course but they were not answering their phones because they were busy putting the kids to bed at this time of night. Finally when I couldn't get ahold of anyone I called the clinic to find out which surgeon was on call. It was Dr. Brooks. He was very thoughtful and when I explained the situation with the inadequate biopsy and our upcoming trip, the first thing he said was; "Well, I can see you tomorrow and we can talk about the pathology and we can try to redo the biopsy to try to get a Breslow depth with the second try. I can give you a suture removal kit and you can take the stitches out yourself on your trip." At this point it sounded like a plan. But he did not know about the mitotic rate being used as an indication for a sentinel node biopsy, a fact that the dermatologist had said was entirely new. He said there was always vascilation back and forth, whether Breslow 0.75 or 1 mm should be the cutoff and it always just comes back to the 1 mm as the cut off. If your depth is 1 mm or more you need the further surgery so we would try to reestablish the Breslow depth with a further excision or punch biopsy at the site. That was the plan.
     But by the next morning I had heard from Don, from Dr. Pele*, the oncologist I had seen in the past for a polyclonal gammopathy which is a benign condition, and most importantly from Dr.  Whit* and his partner at his plastic surgery office who does only melanoma surgery. Dr. D was very nice and after I explained the situation to his nurse, she got a message to him and he called me back directly. He said we would never restablish a Breslow level and this unknown in and of itself was an indication for a sentinel node biopsy.  Now I felt like I had a plan and some options. I went to see Dr. Brooks in the afternoon, but after some discussion we decided not to do any further excision of the biopsy. I had sort of decided to go with the surgery.  He had researched the situation and now realized that the mitotic rate is now used in the risk assessment as of new guidelines about 2 months old and therefore I probably should have the sentinel node biopsy.
     But jDr. Brooks had found another issue. He even as a surgeon had heard a new heart murmur that I didn't know I had. Where did that come from? I wasn't really worried about it but the surgeon and my internist would probably want an echocardiogram done before the surgery. And now my husband was throwing a fit and maintaining that he was not going to take a wife with a new heart condition to Europe with him. He was almost yelling at my cardiologist friend I was talking with to do the stress echo immediately.  How was I going to get that test done within the next day when my internist was out on medical leave and as I learned through another phone call the echo technician at the clinic was out on Friday due to her own minor surgical procedure. So I began throwing my MD after my name around again, calling other clinics and hospitals in the area. I finally found a 10:15 appointment at CSM Ozaukee Hospital. But now I needed an order. So I called my old roommate from when I was working who is on the staff at that hospital and he called in the order. So now I was off to get the echo. I had spoken with my friend and cardiologist who wanted to do a stress echo since I should have the stress part because I am diabetic, but he strongly maintained that this could all wait until I had returned and even til after all the surgical management of the melanoma. But I knew my internist and my surgeon would need the echo so I still worked to get it.
       My cardiologist friend read the results and called me in the afternoon with the non-serious results. "No one every listens to me," he whined. "I wanted to do the stress echo so we would have both the echocardiogram results and a stress at the same time."   
     " I know," I said, "but you would have had to write up a consult saying I could wait for the echo and you haven't even seen me in person. My hands were tied so I got the echo. But you're wrong, I did listen to you." My diagnosis was tricuspid valve regurgitation and a slight elevation of the pressure on the right side of heheart. Nothing needs to be done about this, though I don't know why this has developed now. Anyway the echo is done and checked off my list.
     I slept on and off those two nights, actually getting maybe 6 hours each night but the first thing you think about when you wake up is this diagnosis and what it might mean. I vascillated between complete confidence and optomism and panic and assumption of the worst. This must be almost universal feelings in everyone who has received this diagnosis. My husband says he went through the same thing when he got his diagnosis of prostate cancer. He is telling me that these obsessions finally subside though they never completely go away. I did have times when I was feeling more spiritual than usual, trying to live each moment and feeling a great gratitude for this gift of life and vowing to myself to maintain that gratitude at this high level.
     On Friday, two days after receiving the diagnosis, I saw Dr D, the melanoma plastic surgeon. He was very nice and was very complete with me. He certainly had little pieces of information that no one else had given me. He told me that he was going to proceed as though I didn't have any medical knowledge so he used his audiovisual chart to explain the pathology. Indeed I didn't know that my cancer was a Level IV tumor, having extended beneath the basement membrane and he said that in and of itself was an indication for a sentinel node. I was surprised about the smaller size of his planned incisions and yet he was going to more widely excise the lesion than Dr. Brooksarad planned. He does the axillary node resection through a 1 inch incision. I changed my mind. I decided to go with him. He does this type of surgery all the time. He has a surgical suite for giving the radioactive injection and for the patient to wait for this magic stuff to do its job to identify the sentinel or "gateway" node that is removed to look for the cancer. He quoted studies to me and one of them was that the prognosis was no different for those patients like myself whose tumor had been cut through by a shave biopsy or other type of inadequate biopsy. That was good news to hear. So I left there with my surgery scheduled for June 2nd when we get back. When I got home I called the nurse for my internist who was working in the WIC even though my internist was not there. She said they had put me in for a preop exam on Friday May 28 at 11 am and the receptionist had been supposed to let me know this. So that was set up. I would get the chest xray and EKG either Thursday when we returned or Friday morning as well as the fasting blood work. I think I was finally scheduled up with everything.
     I had to let Dr. Brooks know that I was going with plastic surgeons for this operation. I felt bad that he had been so helpful but now I was not going to have him do the surgery but he had said that he wouldn't be hurt if I went with someone else. But I still worried that he would. I left a message with his nurse about my decision and told her I wanted to speak with him anyway and to thank him. But he didn't call back. Probably to be expected. What surgeon in his right mind would want to call back the old woman/colleague who had just thrown him over for another surgeon. I spoke with my son that night and told him of my decision. He chastised me and said Dr. Brooks had every right to be pissed; that I was engaged in blatant doctor shopping. I guess I was, but people do get second opinions and they sometimes go with the second opinion. If you get a second opinion and you then decide that's the way you want to go, you go with that option and that doctor. right? Well, I am still feeling bad about that. I should have handled that better and told Dr. Brooks that I was going to see a plastic surgeon and there was a possibility that that is where I would go. When he didn't call me back I sent him a long email and told him why I was switching and thanked him for all he had done for me. I hope that helps. I want to make amends and I want to apologize if I caused any negative feelings in him. What else can I do? I think the need to get something done fast in this case because of the trip has led to me moving much faster and impulsively than I usually would.
     So we are going on the European trip with the remains of this lesion still on my arm. I have my pre op and tests, and the wide excision and sentinel node biopsy scheduled with the plastic surgeon at the medical school. I hope I can enjoy the trip. My husband said he was able to do so when we went to Peru with prostate cancer riding in his mind and the need for radiation treatment right away when we returned. I think I will be able to enjoy the trip. Actually given that adverse events in life often increase the appreciation for positive moments in life may help me maintain this positive mindfulness and appreciation, gratitude for every moment.
I had said half jokingly that "life sucks, then you die" but I don't really believe that. Life is good and every moment of it that we have is a beautiful gift. I can truly say that I believe that even in the face of this adversity.