| The Intrathecal Pump - Written from a layman's point of view for the laymen By Harold De Vos The intrathecal pump is used for two purposes, one, commonly referred to as the morphine or pain pump, implanted to relieve intractable pain, and the other, a baclofen pump used as a treatment for spascity. If your doctor or you, yourself, are considering a morphine pump, you have no doubt gone through most of a long list of failed procedures and treatments - such as surgery, stimulators, epidurals, trigger point injections, facet blocks, RF Lesioning, taken dozens of medications (some with nasty side effects), botox injections, and so on and on. There's a reason for that. The pump is considered the option of last resort, but unlike those other procedures which only seem to help here and there, the pump represents very real hope. Most patients who have had a pump for at least a year or so are extremely happy with their pumps and would put up a very real battle to keep them. While baclofen pumps seem to have almost instantaneous results, the pain pump rarely produces instant relief. The reason is that physicians begin with small doses of medication and only slowly titrate (raise) that dosage over a prolonged period of weeks, months, even a year's time before finding an effective dose. In short, the pain pump can take lots of patience. In the beginning, the dosage is usually raised fairly fast, less so as time goes on. How long it takes to get to an effective dose is often related to how aggressively your doctor raises your dosage, something that unfortunately varies a great deal from doctor to doctor. There doesn't seem to be any one standard protocol, each doctor having their own philosophy of treatment, While some are extremely conservative, others are much more aggressive. Another factor is how well a patient tolerates the morphine or whatever other medication is used in their pump. Some patients are very sensitive to increases in dosages producing such side effects as itching, nausea, and other untoward symptoms, all of which, of course, will lead to slower than normal titrations and a longer time period to find an effective dose, adequate pain management. Remember: The Pump never promises total relief, only a significant reduction. Generally, to get a pump, as already mentioned, all other options for treatment must have been tried and failed. Then to see if a pain or baclofen pump might help, a trial is conducted. These trials vary a great deal by doctor and or clinic. In some cases, a trial consists of a single injection of medication(s) near the nerve root causing the pain. If it results in a significant reduction, a person is considered a good candidate. Other trials are multi-day in-hospital procedures where a catheter is inserted into the spinal canal and then hooked up either to an IV drip, an infusion pump, or an actual exterior pump. During these trials, physicians can experiment with various dosages and even different medications. In that respect, the longer second type is more realistic than the single dose injection trial....however, both seem to work quite well. In addition, before a pump is implanted, most doctors/clinics will have their patients meet with a psychiatrist or psychologist to see whether a particular patient is suited for a pump. Often a battery of psychological tests are given to get a better idea of emotional stability, realistic expectations, and a general prediction of whether a pump will work for that patient. Another facet may be to rule out the patient as a drug seeker. For the most part, these visits are rather routine, nothing really to worry about, just one of the hoops a person has to jump through in order to get a pump. In many cases, they are required by one's insurance company and as well, to protect the doctor from implanting a pump into someone who does not actually need one or is not a suitable candidate with reasonable expectations. Of course, one's medical history is taken into account. Don't worry if you are depressed and emotionally stressed, both are symptoms of a person suffering greatly from intractable pain After a doctor checks the medical history, a physical exam done, a psychiatrist or psychologist seen, a trial has shown the pump can be of help, and insurance has been approved, the pump is implanted. The actual pump surgery, if you have had other major surgery, is a fairly easy one. The pump is generally implanted just under the skin in the fat layer of the abdomen. It is often inserted into a mesh bag which may have a stitch or two in the abdominal wall to hold it in place. A catheter is then threaded under the skin from the pump to the site where the catheter is implanted into the intrathecal space of the spinal cord. The spinal cord has several layers of "skin", the intrathecal space being one of those. A catheter must also be "tunneled" under the skin to the level of the spine where it is inserted. This surgery, while not major, is still surgery with all the usual risks - infection, problems with anesthesia, and the like. Any time the spinal canal is worked on, there is the possible result of a spinal leak and with it, the possibility of terrible spinal headaches; while infrequent, they do happen often enough to be a concern. You may be told to lie flat for the first 24 hours and also to drink plenty of fluids (preferably pop with a high concentration of caffeine) to avoid those spinal headaches, most of which disappear on their own within 5 to 7 days. If they don't, a "blood patch" can be done - something that works almost instantly. Blood patches, too, have risks, which is the reason they aren't usually done immediately, but they can be of great help if the headache is prolonged or extra severe. Generally, a pump implant is done on an outpatient basis, often using a spinal block with the person able to be sitting in a chair within a short while. Even if general anesthesia is used, you can expect to go home within a few hours. While not major surgery, it does of course hurt, but recovery if fairly rapid. It is very important that once a pump is implanted, it become firmly attached to the surrounding tissues....and for that to happen, you should avoid lifting, twisting, bending, or similar motions for the first several weeks until the pump and catheter become "socked in" with surrounding tissues. You should avoid moving the pump around manually with your hands. Another precaution many take is to hold the pump in place with a surgical binder. Many pump patients recommend wearing one even if the doctor hasn't prescribed one, but of course, check with your physician. Abdominal binders can be readily found at a local drug store. They are just something to hold that pump in place so the tissues can form in and around the pump and catheter sites to hold them firmly in place. Quite often after surgery, fluid fills the space around the pump (a seroma), making the site around the pump puffy and bloated looking. This is natural and to be expected. In most cases, the body absorbs this fluid in a few weeks. Occasionally, the build up of fluid is excessive and has to be drained by your doctor. This fluid can become infected in rare cases, so if the area becomes reddened and "angry" looking, you should contact your doctor immediately. You can look forward to healing quite rapidly from your implant and will feel pretty good within a few weeks. Even though you feel better, it is still important to limit lifting, bending, twisting, and similar activities. It is also likely you will not be allowed to shower or bathe until the pump incision is well healed (perhaps a week - but follow your doctor's orders). The first fill of your pump with medication is usually partial, to initially stretch the pump's diaphragm and, as a precaution, to make sure it is working as expected before it's first total fill. As such, your first refill is done from one to two weeks later. Subsequent refills happen much less frequently, up to 3 months apart. The time between refills is determined by your dosage. The larger the dosage, the more frequent the refills; but they should be no longer than 3 months, the shelf life of the pain medications used in your pump. This is somewhat different with baclofen pumps where the medication has a much longer shelf life, often 6 months or longer. After getting your pain pump, some doctors do not allow extra oral meds (or patches) for breakthrough pain, while other doctors do allow their use. Since it often takes many weeks, months, or even a year to arrive at an effective dose, you will obviously be much more comfortable if you doctor does allow them. Other doctors allow them for a time, but then begin to wean you off those meds on a schedule they determine, and others continue to allow them for infrequent breakthrough pain. Importantly, your only choice in the matter is your choice of doctors. However, many patients are eager to get off their oral meds - so early on, you should ask if you doctor allows them, and if so, how long.....and then be comfortable with your doctor's answers. There are, of course, side effects with the pump, however most can be dealt with effectively. Except for problems with the pump or catheter itself, these side effects are medication related, not pump related. The most common side effect by far is constipation. It seems as though everyone with a pump has his or her own way of dealing with this issue. For some, adding fiber and a laxative like Senna is sufficient. Miralax and similar prescriptions, are often of great help as well. The most important thing is to stay regular, not to allow days to go by without a bowel movement. The intake of extra fluid my be helpful as well. If sensitive to the pump medication, you might suffer transitory bouts with itching, nausea, and fatigue especially after increases. These side effects tend to get better in a short time as your body adjusts to each new dosage (10 days or so). Benedryl can help a great deal with the itching; while Phenergan or Compazine can help with the nausea.....though some have had to use Zofran, a rather expensive anti-nausea drug developed for cancer patients. If the nausea and itching are extreme and or prolonged, it might be an indication you need to try a different medication in your pump. Also if fatigue is severe, it can often be treated with Ritalin or Provigal. Another side effect, especially for men, is a change in hormones, specifically lowered testosterone levels. Every clinic should screen their male patients regularly for low testosterone. Another hormone affected is prolactin. In fact, the increased levels of prolactin from the use of opioids is often the reason for decreased testosterone....and since prolactin is an important regulatory hormone for women as well, they too can suffer hormonal changes that may affect their periods, libido, and the like. Many men must supplement their testosterone levels on a monthly or bi-weekly basis. Since lowered testosterone has been associated with depression, osteoporosis, and recently reported with the possibility of Alzheimer's, it's important to keep one's testosterone levels normal....besides being important for libido of course. If you clinic does not screen, please have your internist or personal physician run the simple blood tests. As for other side effects, some patients report excessive sweating and intolerance to changes in temperature, this is also perhaps hormone related. Problems that are pump related usually have to do with the catheter which can - rarely - become kinked, plugged, twisted, or even broken. While infrequent, one should always be aware of it's possibility. The main symptom is sudden loss of pain control after having achieved at least some level of relief....or of not getting much relief at all. It's not really known what causes these problems, except perhaps due to activity, poor placement, or even a patient who "fiddles" with the pump manually. When pain relief suddenly changes or pain relief is not achieved, a dye study can be done where dye is injected into the pump, then watched under fluoroscopy as it goes through the pump, catheter, and spinal canal. The problem can then be easily seen and remedied, likely with further surgery. The pump itself seems to be very accurate. It is checked however with each refill. Since the amount pumped over the refill period is a known factor, when they remove the old meds with each refill, the amount taken out should be the amount expected. If not accurate, then of course further tests must be done, the pump perhaps removed, and another implanted. Another rare side effect, but one of which you should be aware, is the formation of a granuloma at the tip of the catheter. A granuloma is a tumor-like formation that can cause major problems if it attaches to the spinal cord. It can cause increase pain, different pain, and theoretically paralysis. It appears to be related to high doses and high concentrations of the pain medications, infectious process, hypersensitivity to implant materials, mechanical or chemical effect of the infusate, or local tissue (toxic/inflammatory) response to the drug. If a baclofen pump is used, the medicine used for spascity is, of course, baclofen; but for pain pump there are several different medications and/or combinations. The more usual medication used at the outset is morphine, since only it and baclofen have FDA approval for use in these pumps. Some doctors will only use morphine because of this fact. However, if you are allergic or overly sensitive, or if morphine doesn't work for one reason or another, other medications are widely used. One such medication is Marcaine (bupivacaine), an anesthetic that when combined in low doses with morphine or other medications can actually make them work better. Other pain medications often used as a substitute for morphine are dilaudid, fentanyl, and sufentanil.....more recently trials are being run using Prialt (also known as Ziconotide, SNX-111, or "snail slime"). Prialt has shown some promise, but as yet is rarely used. As you can see, there are several medications available and for whatever reason one or the other may be more effective for you. Each of our bodies represents a different chemical plant and, as a result, reacts differently to the various medications with some working better than others. Just because morphine fails to provide adequate relief, it doesn't mean all options have yet been tried. There is always hope another medication will work better. The most popular pump made is the Medtronic pump which uses a battery with a limited lifetime of about 5 years. Toward the end of it's life, the pump will usually go into alarm mode, beeping because the battery is getting weak. The pump has to be replaced soon thereafter. Ordinarily, this is even easier surgery since the old catheter is left in place and only the pump itself is replaced. There is another type of pump, such as the Arrow and Codman, which do not use a battery, but instead compressed gas. Their lifetime is unlimited, a distinct advantage; however they do have several drawbacks. For example, while the Medtronic's pump dosage can be increased by using telemetry to the pump, the only way to increase the dosage using an Arrow or Codman pump is to refill it with a stronger mixture of pain medications. This is especially a problem in the beginning when the dosage is changed quite frequently. They can also be sensitive to body temperature, altitude, and such things as lying in a hot tub. Then, too, the Medtronic's pump also has the capability to program a complex schedule. For example, if your pain is always worse in the morning, this pump can be programmed to provide extra meds each day coinciding with those worse periods. It can also be set to provide less medication during the day than during the night (or vice versa) and to give a bolus (a short period during which extra meds can be given); all things the Arrow or Codman pumps can not do. Pump refills are a fairly easy procedure, though a rather large needle used. There is a brief "pinch" as the needle goes through the skin, but otherwise not painful. The main problem encountered is that the needle must be inserted perfectly parallel with the port hole in the pump, or else it won't go in. If your pump moves or is slightly tipped, it can become difficult to refill at times. The doctor and most nurses are, however, quite skilled in this technique. The needle has to go into the middle of the pump, which is the reason a plastic template is used to find the location. The procedure also has to be done in a perfectly sterile environment. Before inserting the needle, the area is swabbed with Betadine, and a sterile drape used to cover the pump area. The needle is then inserted. It is attached to a flexible tube which in turn is attached to an empty syringe. All the old medication is removed by pulling back on the empty syringe; the amount retracted noted, a valve on the tube closed; and a new syringe is attached, filled with your medications(s). The new medication is then slowly inserted into the pump and when done - withdrawn - and the betadine stain removed with alcohol swabs. Finally, using a computer and a wand, telemetry is used to tell your pump that new medication has been inserted and the daily dosage set.....a well as indication when your pump should be refilled and when your pump will go into alarm because the amount of medication has gone too low. This can also be a time when your dosage is increased, or for that matter, decreased. Like any other medical procedure, you should become as acquainted with the pump as possible so that you can make a well informed decision. There is an excellent internet source where patients report their experience with the pump in real life situations, both good and bad. The group is called the "Pumpsters" and is located at http://health.groups.yahoo.com/group/pumpsters/ Doctors will also have educational material available. Like all treatments for chronic pain, the choice of pain doctor is the most essential part. Unfortunately, doctors vary a great deal in their approach and philosophy. There doesn't seem to be any one norm as to how any one patient is treated by various doctors who come from a wide range of backgrounds. This is true of the pump as well where there is a wide difference in such things as to how a trial is done, what the starting dose will be, how fast the dosage will be raised, and even how high a dosage they will use. Many of these doctors see inflexible in their philosophies and treatments. For example, some patients after an entire year won't have reached what patients of another doctor uses as his or her starting dosage. The importance of your choice of doctors can not be over emphasized. When you see a new doctor, be prepared to ask a wide range of questions. If you seem to be getting no where, it will unfortunately, be necessary to change doctors - something that isn't so easy for those already having a pump. In many ways, patients consider themselves to be "married" to their pump doctors for their long term care. Plus many doctors will not accept another pump doctor's patient. None of this is written to discourage you, but rather in terms of what to expect. The pump can, and does, bring much hope to what otherwise seems without hope. Medications used intrathecally become many times more potent than when they are given orally.....so a little goes a long ways. The medications do not go through your entire system the way oral medications do, so they have fewer side effects than the larger amount of orals. No doubt about it, the pump does relieve pain and can result in a much better quality of life; one that can be lived with dignity. Important - Medical/legal disclaimer This was written by a layman in layman's terms - for the lay person. It is not written by a medical doctor or professional, nor is it intended to cover all the risks associated with the intrathecal pump. Please do not take any information or opinions found on this site or article as medical advice. If you need medical advice, please consult with your state licensed medical professional. This article is copyrighted. Please do not copy or distribute without express authority of the author. He may be reached at hdevos@pressenter.com |