The Leeds Teaching Hospitals NHS Trust Renal hyperparathyroidism - Parathyroidectomy

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n The Leeds Teaching Hospitals NHS Trust Renal hyperparathyroidism - Parathyroidectomy Information for patients

This leaflet provides information about renal hyperparathyroidism and having a parathyroidectomy, reasons for the procedure and alternatives to surgery, along with the risks of surgery and aftercare. What and where are parathyroid glands? The parathyroid glands are 4 small glands, each the size of a grain of rice, found in your neck. Parathyroid glands They lie near the thyroid gland (a butterfly-shaped structure, in front of your windpipe). The parathyroids control calcium levels in your bloodstream. If they detect low calcium levels, a hormone called PTH (parathyroid hormone) is released from the glands. This hormone helps to increase calcium levels in the blood by releasing it from your bones. In renal hyperparathyroidism the parathyroids can become overactive producing an excessive amount of PTH to be released. This can result in thinning of the bones (osteoporosis) or depositing of calcium in other structures e.g. blood vessel walls causing damage to organs. 2 Thyroid

Why do I need a parathyroidectomy? Parathyroid surgery is a common operation performed regularly with excellent success rates and relatively few risks. Your renal physician and/or surgeon have recommended removal of your overactive parathyroid glands: this is called a parathyroidectomy. This is normally when the renal team feel medical treatment is no longer effective at controlling the overactive parathyroids. Surgery will hopefully prevent worsening osteoporosis and usually improves symptoms. It will not improve your kidney function. What are the alternatives to surgery? If you decide to not have parathyroid surgery, your renal physician will continue to monitor your bloods regularly. They may try medical treatment to reduce the effect of the high PTH levels. Typical drugs used include modified Vitamin D, cinacalcet and etelcalcetide. Some of these medicines have side effects that are not tolerated by all patients. What operation will I have? If you decide to have an operation, we will request scans of your neck to try to locate the over active parathyroids. The most common type of scan is an ultrasound used to try to identify enlarged parathyroids within your neck as well as examining your thyroid gland. Surgery for renal hyperparathyroidism involves looking for all your parathyroids within your neck through a central horizontal cut in your neck. This is called a bilateral neck exploration. 3

Typically, 3½ or all 4 parathyroids are removed. Your surgeon may also remove your thymus (fatty tissue within the lower part of the neck) where small deposits of parathyroid cells can be found. In addition to the surgery, you may have blood tests taken during the procedure to monitor your PTH levels. Sometimes tissue is sent to the laboratory to confirm that the correct parathyroid has been removed. This will help guide the surgeon on the success and extent of the surgery. How is surgery performed? Parathyroidectomy surgery is performed under a General anaesthetic which means you will be completely asleep for the procedure. Your wounds will be closed with stitches (normally dissolvable) before you wake up. What are the potential risks? All surgery carries potential risk but these are generally low in parathyroid surgery. 1. General risks Bleeding - there is a small risk of bleeding with any surgery. The chance of large blood loss requiring a blood transfusion after parathyroidectomy is extremely low. Occasionally people bleed in their neck after surgery causing swelling (haematoma). Although rare, patients may need to go back to theatre urgently to stop the bleeding Infection - any surgery carries a risk of wound infection or chest infection but these are both quite uncommon after parathyroid surgery. 4

Deep Vein Thrombosis (DVT)/Pulmonary embolism (PE) - patients having a general anaesthetic are at risk of developing blood clots in their legs (DVT) or lungs (PE). To reduce this risk you will be given special stockings to wear whilst in hospital and are advised to keep active. Scarring - most scars in the neck heal well and are barely visible after a few months. However, some people are prone to developing thickened and bumpy scarring called keloid. If you have had problems with keloid scarring in the past it is important to let your surgeon know before surgery. 2. Specific risks Voice change - the nerves that control your vocal cords (and so your ability to speak) travel close to your parathyroid glands. Therefore, there is a risk that these nerves may become damaged during surgery which can affect your voice. The chance of permanent damage to your voice is very low (less than 1 in 100 patients). However, some patients may notice a temporary change to their voice that lasts a few weeks or months due to bruising or stretching of the nerve. Some patient notice subtle voice changes even without evidence of nerve damage. Swallowing problems - following parathyroid surgery some patients may experience difficulty in swallowing. This is normally temporary and improves with time. Failure to cure - there is a small chance (less than 5%) that surgery will not cure your high calcium problem. This is because not all the enlarged glands can be found. If this occurs, you can discuss with the surgeon whether to undergo further investigations and surgery or to be monitored with medication to control your calcium levels. 5

Low calcium - After the enlarged parathyroids are removed it is common that you will develop low calcium levels. Your renal team will prescribe calcium and Vitamin D tablets as well as monitor your Calcium levels closely following surgery. Recurrence - In the future there is a chance that any remaining parathyroid tissue may become overactive and cause your PTH levels to rise again. This occurs in approximately 1 in 10 renal parathyroid patients. Your renal team will monitor for this regularly. What happens on the day of surgery? Renal patients having parathyroidectomy are normally admitted at least a day before surgery. If you regularly have dialysis this typically happens the day prior to your operation. You are allowed to eat and drink normally until approximately 2am on the day of surgery, and will then be advised by the nursing team about drinking until your operation. On the day of the surgery you will be seen by the surgeon who will explain the procedure again. If you haven t signed a consent form before, you will be asked to complete it on the day. You will also be seen by the anaesthetist who will discuss the anaesthetic with you. If you have any further questions at this time it is important you ask them now. Your operation will take between 1-3 hours to be performed. After the procedure you will wake up in the recovery area, also known as PACU (Post Anaesthetic Care Unit). Here, specially trained nurses will monitor your recovery from surgery with regular checks on your breathing, heart rate and blood pressure as well as your wound. 6

When they are happy you are well enough, you will be moved to the ward area. You will normally be able to eat and drink once you are awake enough, unless the surgeon has given specific instructions. Family and friends are usually able to visit the evening of surgery. What happens after surgery? Following surgery you will remain on the ward overnight for on-going monitoring. You will have blood tests in the evening as well as the following morning to check your calcium levels. If you are not already on them, you will start calcium and Vitamin D tablets. The morning after surgery you will be reviewed on the ward round by the surgical and renal teams. If you were taking cinacalcet prior to surgery this will be stopped, if the operation has been successful. When will I go home? The majority of patients go home a few days after surgery but sometimes it is necessary to keep patients in hospital longer. Reasons for this may be other medical problems, monitoring of blood tests or for social reasons. Wound care after discharge Your wound has a dissolvable stitch under the skin. The wound is then normally dressed with special skin glue and steristrip (thin tape) dressings. 7

These allow you to take showers after your operation and you can then pat the wound dry. You should avoid soaking your dressings and swimming is not advised for 2 weeks after surgery. The steristrips can be removed from your wound after about a week if they haven t fallen off already. You may notice the ends of the stitches, like fine hairs, sticking out from either end of your wound. After 2 days these can be trimmed by yourself or the GP or left until review in clinic by your surgeon. If you are concerned about any swelling or redness to the wound after discharge from hospital you can call Ward J23 on telephone number: 0113 206 9123 day or night for advice. Alternatively you can see your GP. Blood tests after surgery Some patients may be asked to attend Ward J23 (Level 1 Chancellor Wing at St James s University Hospital, Leeds) a few days after surgery for a blood test to check their calcium levels. You will be advised about this prior to discharge. If you experience any tingling to your fingers or around your mouth once you go home, it could be a sign that your calcium levels have dropped. Please contact Ward J23 on telephone number: 0113 206 9123 for advice. You may be required to attend the Ward urgently for a blood test to check your calcium levels. 8

When will I be seen in clinic? The majority of patients will be seen in clinic 2 weeks after discharge from hospital. Sometimes the appointment date will be given to you prior to leaving the Ward but it is more likely you will receive this through the post. Please contact Ward J23 on telephone number: 0113 206 9123 if you have not been offered an appointment within 3 weeks of your operation. When can I go back to work/normal activity? Most patients are well enough to return to work 1-2 weeks after surgery. During this time it is important to take things gently. It is advisable not to drive for a few days after surgery and to review your car insurance policy for specific limitations. Further information Please consider how the benefits and potential risks of surgery might affect you as an individual including your occupation and/or hobbies. We are always happy to discuss this with you in detail. 9

Notes 10

Notes 11

The Leeds Teaching Hospitals NHS Trust 1st edition Ver 1.0 Developed by Emma Collins - on behalf of the Thyroid and Endocrine Surgery team Produced by: Medical Illustration Services MID code: 20171204_011/MH LN004241 Publication date 04/2018 Review date 04/2021