Cure Alveolar Soft Part Sarcoma International (iCureASPS)

One thing to discuss with your surgeon prior to a thoracotomy is the various types of preempitive analgesia (pain prevention) that are available to you. An intercostal nerve block is quite easily done at the end of the procedure by the surgon. A needle ususually reserved for spinal blocks is long enough for the surgeon to block the nerve roots at their origin. This is such a simple procedure that it is practically a 'no brainer'. The local anesthetic (numbing medicine) injected lasts long enough to prevent pain "wind up" and allow the patient to wake up comfortable and able to take full, deep breaths that are so necessary after reexpansion of the lung. Additionally, there is a specially designed chest tube that incorporates a tiny catheter (the size of a penpoint) inside the chest tube itself. It works much like a 'soaker hose' to bathe the pleural space in anesthetic (numbing medicine). Obviously, the local anesthetic is being simulataneously infused and suctioned back out through the chest tube drain but I have seen it make a tremendous difference in patient comfort post operatively. Nonsteroidal antiinflamatory drugs are also quite beneficial when they are given before the incision is made. The antiinflamatory drugs such as ibuprofen or ketoralac are sometimes not appropriate depending on the coagulation (blood clotting) status but your surgeon will have an opinion on their risk/benefit in your case. It generally accepted that there is a huge psychological component to pain but the physiologic causes and manifestations of pain are of primary importance. Additionally, stress and lack of sleep can contribute to muscle tension and overall dis-ease. It is much easier to prevent the pain than it is to 'catch up' with it postoperatively. It is also preferable when available for you to use patient controlled analgesia (PCA) and push the button when you need pain relief. This prevents delays that could be caused by the nurse not being available to give you the medication. Watching anyone experience pain is entirely distressing and many times unnecessary. As Sean will attest, it can set up a nasty chain of events to contend with down the line. I would urge anyone contemplating surgery to consult with their surgeon and anesthesia team to ward off unnecessary pain and then to have realistic expectations. There will be some discomfort involved and how you meet it and cope with it will make all of the difference in what you experience. If you have any specific questions about my experiences feel free to email me.
to good health and happiness, ellen

Ellen - this s a very good subject for a separate topic. Pulmonary metastasectomy is a very valuable option for the ASPS patients as most of them eventually get lung metastases, often multiple but when they found early in a resectable stage, surgery is shown to prolong their lives but it associated with a risk of the post thoracotomy pain syndrome - this is a condition when pain can persists years after the surgery. It is very important to be aware about the danger of this event and be prepare to take all the avail. measures to try to prevent it and also to treat this condition if it has occurred. We have an old member on our board, Charlie, who recently joined us again after he lost a connection with our community after the old web-site's board was unfortunately closed, he has a very painful experience with the post thoracotomy pain syndrome lasting for a few years now - his condition is very obviously present but was not diagnosed as such by the attending medical personal until recently. May be Charlie will be able to add more and Elaine would repost/add the info about the procedure which Sean had to get a relief of his condition which looks to be of the same origin.