Skip Navigation

Cystinuria Support Network

Treatment

Invasive Procedures

Open Surgery (Extended Pyelolithotomy)

A patient is given a general anesthetic. Surgeons physically remove the whole stone by cutting into the kidney and removing the stone. Recovery time 6 weeks. Hospital stay 10-14 days. Complications such as severe pain on recovery from the anesthetic, initial mobility problems as associated with any major surgery, need for recovery time and time off work, reduced kidney function. The kidney will only tolerate this procedure a few times. Benefits include quick fix and possibly only solution for very large stones. The procedure leaves a 10 to 12 inch scar.

Percutaneous Surgery (keyhole)

A patient is given a general anesthetic. The surgeon will make three or four small one inch incisions in the back. A camera is passed through one of the incisions. A laser or lithoclast is inserted into the kidney and the stone is broken up. Some of the stone can be removed through the incisions. Others are left to pass naturally. Hospital stay 4-7 days. Recovery time 2 weeks depending on the patient. A nephrostomy tube may be left in temporarily to aid drainage and to allow the kidney to heal. A Stent tube is sometimes inserted, especially if there is a narrowing of the ureters.

Minimally Invasive Surgical Procedures

The following procedures are minimally invasive and require less recovery time than standard surgical procedures. They can be used following Percutaneous surgery or ESWL to remove fragments.

Cystoscopy (Retrograde Cystoscopy)

This is a procedure which is used in conjunction with various probes and lasers. It can either be used as a diagnostic test, in the case of pain without a stone, or as a way of inserting a probe to break up stones and a Dornier basket to remove stones. Either under a local or general anesthetic a long flexible tube containing the camera is inserted into the urethra. It then passes into the bladder and, depending on what it required, is passed through into the ureter. Once in position, various other instruments are inserted through the tube and treatment is carried out.

Following the procedure you may feel discomfort in the bladder. However it may be very difficult to pass water the first few times. It feels like a severe case of cystitis. It may be worth holding on before going to the toilet. The cystoscope will have emptied the bladder during the procedure, but the trauma to the bladder makes it want to expel almost immediately afterwards. Once enough fluids have been drunk to necessitate voiding, it is best to relax as much as possible. The urethra may still be in spasm and so does not want to release as well as normal. It can be incredibly painful the first time, but after 1 - 2 hours the bladder and urethra returns to normal.

Depending on the procedure carried out, you may pass a little blood and some gravel which should be handled as you would normally.

Dornier Basket Removal via Cystoscopy

This is a procedure where, under a general anesthetic, a camera is inserted through the urethra into the bladder. It is then moved into the ureter until it reaches the stone. A basket type attachment (like a grabber in the funfair side shows) is inserted alongside the camera and passed along to the stone where the basket is opened put around the stone and closed. The basket is the removed from the ureters, bladder and urethra, with the stone inside.

This is normally a straight forward procedure and is useful for small stones which are not too far up the ureters. The effectiveness of the Dornier basket is dependent on whether the operator is able to get the equipment to the stone and the size of the stone.

Holmium Laser Therapy

This is a very powerful laser used to break up stones in situ. It is inserted in the same way as the Dornier basket and can also be used in conjunction with percutaneous surgery. The laser is fired at the stone, cutting it up. Only a very skilled operator can use this equipment as the laser is extremely powerful.

Other Laser Therapy

There are other lasers which are used to cut up stones in situ. However their effectiveness is dependent on the density, hardness and size of the stone as they are less powerful.

Direct Lithoclast

A Lithoclast is a type of lithotriptor probe, also used in conjunction with cystoscopies and Percutaneous surgery. The probe is placed directly on the stone and the shockwave is fired, hopefully fracturing the stone. Again, effectiveness is dependent on hardness, density and size of stone.

Nephrostomy

This is where a tube is inserted through an 1 inch incision in the back, directly into the kidney. Local anesthetic is given to the area of the skin where the incision is made. Some form of tranquilizer is also given to calm the patient. The time taken for this procedure depends on the state of the patient. It is sometimes seen as a barbaric procedure, however it is sometimes necessary to reduce Hydronephrosis due to an obstruction. An obstructed kidney which is not drained may become septic, damaged and possibly lead to septicemia. Once inserted nephrostomies (although unsightly and embarrassing) are not usually painful.

Nephrostomies are safe to leave in for up to six weeks. They are a source of infection, however and care must be taken to keep them as clean as possible.

Caring for a nephrostomy tube

So you are going home with a nephrostomy tube and leg bag. Now what?

With a bit of care, you can make this experience as comfortable as possible. You will need: tape, non-stick gauze pads, a type of combine dressing or padded dressing, and replacement leg bags. Do not use the type of gauze pad with a slit for the tube as this tends to stick to the tube and can be painful to remove. Tape the nephrostomy tube, about 4-6 inches down the tube, on a downward angle so that it ends up coming down your hip and the outside of your leg. Taping the tube in place helps relieve any pressure or pulling on the tube caused by the leg bag. Place the bag on the outside of your leg at a level that you find comfortable. You do not want the tube placed on your buttocks so that you will sit on it. Sitting on the tube can cause punctures and leaks. Place the non-stick pad on the combine or padded dressing so that it faces the nephrostomy tube entry point. Tape in place taking care not to tape the bandage to the tube. I personally prefer using a 5in x 9in (12.7cm x 22.9cm) combine dressing folded in half for additional padding, using a minimum of tape to hold the bandage in place. Tape that goes on - must come off - ouch!!

Since baths are generally frowned on while wearing a tube, showers are great. A handheld shower head allows you to aim the water directly at the tube insertion point washing away any discharge. A wet or dry cloth used gently on the site will also help remove any irritating dry discharge. Take care that you do not pull on the tube or the stitch that holds it in place.

Leg bags come in different sizes. A smaller person would use a smaller bag. The best type is the kind that has a nozzle or flip top on the port. The types with rubber caps can easily be dislodged by pants and result in leakage. Fold the port under the bag, facing up your leg so that it is protected by the bag. This helps minimize any embarrassing accidents. Cloth/Velcro or elastic leg bag bands are much more comfortable than latex bands which can irritate the skin. Change your bag every week to avoid unpleasant odors.

Stent Tubes

This is another way in which kidney are allowed to drain. Stent tubes are often used after surgery to allow the kidney to heal and to dilate the ureters. This is useful if the ureter has narrowed due to an obstruction. They are sometimes used in conjunction with a nephrostomy. They are inserted under a general anesthetic but often removed under a local. As the bladder is a smooth muscle, Stent tubes can cause severe spasmodic pain for a period after they have been inserted. Various drugs can be used to relieve this spasm pain. Cystinurics can also find relief in using a hot water bottle on the bladder. If the stent lies on a certain place in the bladder they can also cause nerve pain. They often also cause the urethra to spasm which is very uncomfortable. The constant discomfort of a Stent tube can cause some cystinurics to become tired and run down. They can also cause depression in cystinurics who have to have them for an extended amount of time. Stent tubes are safe to leave in for up to six months. They are often removed in a day unit without anesthetic with a Cystoscopy. Some cystinurics find that crystals form around the Stent tube which can make removal uncomfortable. Other cystinurics do not have any problem with stents tubes and prefer them to the nephrostomies.

Non Invasive Procedures

Extra Corporeal Shock Wave Lithotripsy (ESWL)

This is a procedure where the sound shock waves are used to break up stones without the need for surgery. A lithotriptor comes in two forms. The patient either lies in a bath of warm water, under general anesthetic, and the shock waves a fired through this water onto the kidney. This is an older form of lithotriptor which is not always effective. The newer forms of lithotriptor use a table with a hole in it. A patient lies on the table and the dome which includes the shock wave mechanism is raised to meet the cystinurics back. There is often a rubber or silicone sheet filled with jelly or warm water between the patient and the mechanism. The dome is pressed into the patients back and the shock wave is fired.

The shock waves are timed to the cystinurics heartbeat. It can take anything from 500 to 2000 shock waves to fracture the stone depending on the size and density of the stone. Monitoring of the progress is done by either ultrasound or image intensifiers. Careful placing or the sound shock waves is necessary to ensure accuracy. The patient must lie completely still during the process.

The process is not always painful although some cystinurics find the pain is either intense kidney pain, or irritating on the lines of water torture. Various drugs are used to control this pain.

Usually lithotripsy is performed as a day case and a hospital stay is not necessary. Stone fragments are usually passed within 1-2 days but further treatment may be required.

Please note not all makes of lithotriptors are effective in breaking up cystine stones.