RENAL ANGIOMYOLIPOMA EMBOLIZATION

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1 RENAL ANGIOMYOLIPOMA EMBOLIZATION The information about renal angiomyolipomas on the next several pages includes questions commonly asked about the embolization procedure. Please take a few moments to review the information provided and then feel free discuss the information with us and/or your urologist. WHAT IS A RENAL ANGIOMYOLIPOMA (RENAL AML)? Renal angiomyolipoma is a term to describe a mass (tumor) in the kidney that has fat, muscle and blood vessels. Renal AML occurs in less than 3% of all persons. AML is four times more common in women. Angiomyolipomas are associated with tuberous sclerosis in 20% of angiomyolipomas. 80% of patients with tuberous sclerosis have angiomyolipomas. WHAT ARE THE SYMPTOMS MOST FREQUENTLY ASSOCIATED WITH ANGIOMYOLIPOMAS TUMORS? Small angiomyolipomas are usually not causing problems (asymptomatic). However about 40% will create problems. In approximately 80% of the patients with symptomatic angiomyolipomas, the mass is greater than 4 cams in size (1.5 inches). The symptoms can be very minor to life-threatening. The symptoms can include: 1. Life threatening bleeding into the abdomen and pelvis 2. New onset (acute) abdominal pain, flank or back pain. 3. Blood in urine (microscopic or noticeable) 4. Weight loss 5. High blood pressure (hypertension) 6. Nausea and Vomiting. WHAT ARE THE OPTIONS THAT ARE CURRENTLY AVAILABLE FOR TREATING ANGIOMYOLIPOMAS? Your urologist or medical doctor has probably discussed the options with you. The options include: 1. Embolization. An Interventional Radiologist will block the blood supply to the mass in the kidney while sparing the blood supply to most of the kidney. 2. Thermoablation. A probe is inserted is inserted directly into the mass. The mass is either heated to a high temperature or cooled to a temperature below freezing. The procedure spares the kidney but destroys the mass. 3. Surgery. The urologist will remove the mass and at least part of your kidney. The location of the mass, the size of the mass, and your kidney function are among the factors that will determine if the entire kidney is removed. 4. Do Nothing. If the mass is less than 4 cms (1.5 inches) and you are not having symptoms, the option is to follow with either CT scans or MRIs every 6 months to year. PE (10/11) 1 of 6 To view: To order:

2 WHO ARE CANDIDATES FOR THE PROCEDURE? Patients with symptomatic angiomyolipomas are potential candidates for embolization of the angiomyolipoma. HOW LONG HAVE WE BEEN DOING THE EMBOLIZATION PROCEDURE FOR ANGIOMYOLIPOMAS AT UVA? The embolization procedure for angiomyolipomas has been done at the University of Virginia the early 1990 s. WHO ARE NOT CANDIDATES FOR THE PROCEDURE? Patients with masses in the kidney that are not angiomyolipomas may or may not be candidates for the embolization procedure depending upon the type of mass, the location and size of the tumor. WHAT ARE THE POTENTIAL BENEFITS OF THE EMBOLIZATION PROCEDURE? The benefits of the embolization include: 1. Minimally invasive procedure that usually requires only one night in the hospital. 2. No big incisions 3. Able to return to work within 5-7 working days 4. Decrease the risk of bleeding 5. Preserves a large portion of the kidney IF I EXPERIENCE A BENEFIT FROM THE EMBOLIZATION PROCEDURE, HOW LONG WILL IT LAST? Studies have demonstrated that the embolization has been effective in controlling the growth of the tumor for at least 5-10 years WHAT ARE THE POTENTIAL COMPLICATIONS ASSOCIATED WITH THE PROCEDURE? The complications associated with embolization are infrequent, but the most common ones include: 1. Bleeding from the puncture site where the small tube is inserted. When bleeding does occur, it is usually easily controlled. Significant bleeding is quite rare. 2. An allergic reaction to a medication or the contrast agent used during the procedure can occur, but it is rare and not predictable. 3. Infection in the area treatment (abscess or fluid collection) requiring the placement of a drain to assist with the healing less than 3%. 4. Renal failure The mass is so large that embolization hurts the blood flow to the entire kidney and the kidney does not function. As long as the other kidney is working the problem is very rare. 5. Nephrectomy Damage to the kidney that would require surgery to correct very rare. RENAL ANGIOMYOLIPOMA EMBOLIZATION 2 of 6

3 WHAT DO I NEED TO DO TO PREPARE FOR THE PROCEDURE? 1. An ultrasound and/or MRI of the abdomen will be performed to determine the size, number, and location of the angiomyolipomas. The MRI may be done at UVA or by your local institution (usually within 3 months of the scheduled procedure). However, the studies will need to be of high quality. 2. Blood work may be done on the day of the procedure or within 1 month of the procedure. 3. You will meet with one of the physicians or nurse practitioners in Interventional Radiology to discuss the procedure, complete a brief history and physical exam, and sign an informed consent form. HOW LONG WILL I BE IN THE HOSPITAL? You will come to the hospital the day of the procedure. You can expect to go home in the late morning or early afternoon the day after the procedure. Rarely, some patients may need to spend a few more days in the hospital. HOW LONG WILL THE EMBOLIZATION PROCEDURE TAKE? The procedure usually takes 2-3 hours. CAN I EAT BEFORE THE PROCEDURE? You should not eat any solid food after midnight of the day of the procedure. You can have clear liquids the morning of the procedure. If you are diabetic or take other medications (i.e. a blood thinner) on a regular basis let, we know so that we can adjust your medications as necessary. WHAT DO I DO ABOUT MY MEDICATIONS? Most medications do not need to be stopped or held because of the procedure. However medications such as glucophage, Coumadin, and insulin sometimes need to be adjusted. Glucophage should not be taken for 2 days after the procedure. Coumadin is usually held 3-4 days before the procedure. High blood pressure medications usually are not stopped. The insulin dose the day of the procedure will be adjusted according to the type of insulin but may be reduced to one half of your normal morning dose. If you have an allergy to contrast dye (IVP dye or x-ray dye), please let us know so that we can prescribe a medication to reduce your risk of a dye reaction. WHERE DO I COME THE DAY OF THE PROCEDURE? Please report to the Interventional Radiology Registration on the First Floor of the Main UVA hospital at the time given you (This is usually one hour before the scheduled procedure). RENAL ANGIOMYOLIPOMA EMBOLIZATION 3 of 6

4 WHAT DOES THE EMBOLIZATION PROCEDURE ITSELF INVOLVE? Upon your arrival in the department, a nurse or a nursing assistant will accompany you to the recovery area and help you change into a hospital gown. A nurse will then start an IV line. Any necessary blood work will be done. The IV allows us to give you medications to help you relax and decrease any discomfort that you may have during the procedure. If you are unable to empty your bladder (urinate) while lying flat, the nurses will place a catheter in your bladder to drain your urine. This catheter will be left in place until you are able to get up to urinate (usually about 6 hours after the completion of the procedure, unless requested by the patient otherwise). A physician or nurse practitioner will meet with you to complete your history and physical, explain the procedure, and ask you to sign an informed consent form, if not already done. The nurse and X-ray technologist will take you into a special X-ray suite where the embolization procedure will be done. After placing you on the x-ray table, your groin areas will be cleaned with a special soap and you will be covered with sterile towels and drapes. An IR physician will numb an area of your groin with Lidocaine and insert a small needle into your artery. A small tube, called a catheter, will then be inserted into the artery in your groin. The catheter will be positioned to allow us to see the arteries supplying your kidney and the mass. Pictures will be taken using X-ray contrast (dye). After the IR physician has located the arteries to your kidney, he/she will inject a mixture of ethanol (alcohol) and poppy seed oil and bead like material into the arteries, blocking the blood supply to the angiomyolipomas. Once the physician has blocked the arteries, you will be returned to the recovery room. The catheter in your groin will be removed and hand-held pressure placed on the artery in your groin. You will be observed for a brief period of time in the recovery room before going to your regular hospital room. WHAT CAN I EXPECT AFTER THE PROCEDURE? You will be monitored on a regular nursing unit where someone will check your blood pressure, heart rate, temperature and pulses at frequent intervals. They will also check the puncture site in your groin area for any signs of bleeding or bruising. You will be on strict bedrest for 2-4 hours after the procedure. After that time, you can get out of bed, but you should take it easy. At that time, if you have a catheter in your bladder, it will be removed. Some patients complain of moderately severe pain in the flank area and nausea after the procedure. The doctors will order a pain medicine that will be given to you in your IV if necessary. The pain usually decreases significantly over the next hours. Before going home, the physician will give you a prescription for the pain-controlling medications that you can take by mouth. It is not uncommon for you to have flu-like symptoms for 5-7 days after the procedure. Mild fever, nausea, aching, tiredness and pain can usually be managed with the oral medications and rest. Most patients are able to resume sedentary work within 5-7 working days. RENAL ANGIOMYOLIPOMA EMBOLIZATION 4 of 6

5 IT IS VERY IMPORTANT FOR YOU TO MONITOR YOUR BOWEL ACTIVITY. Pain-controlling medications can cause constipation, which can cause severe pain in the lower abdomen and pelvis area. We want you to have a bowel movement at least once a day; even it requires you to use a laxative. It is very important that you are taking stool softeners before and after the procedure. You also need to eat or drink food or liquids that help you to keep your bowels moving, until you have quit taking pain-controlling medications and your bowels are working on a regular basis. AFTER THE PROCEDURE, WHEN SHOULD I CALL MY PHYSICIAN? Some patients experience "flu-like symptoms after the EMBOLIZATION procedure. The symptoms go away over a period of 5-7 days, although mild symptoms may linger for up to 2-3 weeks. However you need to contact us or your doctor for: 1. A temperature greater than 101 degrees and /or chills; 2. Persistent pain not relieved by the prescribed pain medications; 3. Persistent nausea and vomiting; 4. If you develop pain or coolness in either leg; 5. Blood in urine; or 6. If you have any questions. If you notice bleeding or a bruise growing around the puncture site in your groin, call Interventional Radiology at between 8:00 A.M. and 5:00 P. M. Monday through Friday and ask for or one of the other physicians. Between 5:00 P.M. and 8:00 A. M. or on weekends or holidays, call and ask for the fellow physician on call for Interventional Radiology. Please give the operator your name and home phone number. Otherwise, you should call an ambulance and go to the nearest Emergency Room. WHAT IS THE FOLLOW-UP SCHEDULE AFTER THE EMBOLIZATION PROCEDURE? Currently we are requesting patients to have the following: 1. An abdominal MRA at 3 months, 1 year and yearly thereafter; 2. Clinic visits with us at 6 weeks, 3 months, 1 year and yearly thereafter.. RENAL ANGIOMYOLIPOMA EMBOLIZATION 5 of 6

6 WHAT CAN I EXPECT DURING THE WEEK FOLLOWING THE PROCEDURE? The first week following the procedure, you may experience a flu-like feeling. The first few days at home should be one of rest, as your body makes the move from the medicines you took in your vein to those you are now taking by mouth. You may notice a slight increase in the pain the first day or two when you are home, but this pain should become less on each of the following days. Your activity level can be increased each day. The activity should be based on your energy level and how you feel. Use common sense. You will be given three types of medicines for pain and a steroid medication (unless your are diabetic or have some other reason not to take steroids) when you are sent home from the hospital. One pain medicine is a narcotic; the other is an Advil - type of pain-killing medicine (no steroidal anti-inflammatory drug NSAID). Each of the medicines for pain should be taken as you feel the need, using the prescribed guidelines. We do encourage you to take the narcotic pain medicine at night for a few days, even if you do not take it during the day, as the pain seems to be worse at night. The NSAID-type medicine can be taken every 6 hours. We encourage you to take the NSAID-type medication for the first couple of days. The steroid medication is to help reduce the amount of swelling and inflammation in the kidney. The steroid medication will be reduced every day until you will no longer take it. Because narcotic pain medicines can create constipation, we encourage you to eat fruits and vegetables high in fiber. We will ask that you also drink plenty of water and fruit juices or any beverage that might help to move your bowels. For the first week after you go home, we will ask you take a stool softener (such as Colace [docusate sodium]) once a day. A gentle laxative like Milk of Magnesia may also be needed. Colace (Docusate Sodium) 100 mg, Advil, and Milk of Magnesia may be purchased over-the-counter at many retail stores. If the Milk of Magnesia is not effective for creating a bowel movement, we will have you take Magnesium Citrate which may be purchased over-the-counter at many retail stores. WHEN CAN I RETURN TO WORK? Most patients are able to resume sedentary work within 5-7 working days. For further questions or concerns you can contact a nurse practitioner at RENAL ANGIOMYOLIPOMA EMBOLIZATION 6 of 6

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