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Cystinuria :Treatment, Procedure, Cost And Side Effects

What is the treatment? How is the treatment done? Who is eligible for the treatment? (When is the treatment done?) Who is not eligible for the treatment? Are there any side-effects? What are the post-treatment guidelines? How long does it take to recover? What is the price of treatment in India? Are the results of the treatment permanent? What are the alternatives to the treatment?

What is the treatment?

Cystinuria is an inherited autosomal, reoccurring disorder. It is a type of Aminoaciduria. It is caused in people by a genetic defect. It interferes with the person's ability to absorb amino acid. The amino acids are generally absorbed back into the bloodstream. The amino acid isn't soluble in urine. If it is not absorbed by the body, the amino acids would be accumulated inside the kidney and form crystalline stones or crystals. The symptoms include blood in urine, vomiting, fever, chills, discolored urine, pain in abdomen region and severe pain in neck and back areas. The symptoms would only occur if the stones are present inside the kidney. The stones generally occur more than once. The cystine stones can be prevented through adequate hydration and urinary alkalinization. The rock- hard stones get stuck in kidney, bladder or ureters and would cause extreme pain for the individual. Diagnosis is done to test whether the stones are made of cystine. Sometimes even genetic test is done. The cystinuria must be treated immediately in order to avoid pain. The treatment includes dietary changes, tablets, medications and even surgery for severe cases.

How is the treatment done?

The treatment for Cystinuria begins by examining the patient history, condition and some tests are carried out to detect the presence and nature of the stones. The tests include genetic testing, urinalysis, intravenous pyelogram, abdominal imaging (MRI, CT scan and ultra sound). Through these tests, the doctor would be able to determine the size and nature of the stone and treat the patient accordingly. Based on it the treatment includes following things:

  1. Home Care: Home care remedies include drinking lots of water, which will lower the ability for the cystine stones to form. Cystine would not be soluble if the urine is acidic. By changing the diet, the stones can be avoided. Do not intake food with high acidic content. Salt is another main factor in cystine formation. The diet should contain a minimal amount of salt. Reducing salt intake to less than 2 grams would help in preventing the formation of crystals.
  2. Oral Medication: The patient may also take oral medications. The medications called chelating agents will help in dissolving the crystals. These drugs work by chemically combining with the crystals and form a complex compound. This compound gets easily dissolved in the urine. Pain medications are also prescribed to control the pain.
  3. Surgery: If the size of crystals is bigger and larger in size, or block one of the tubes leading to the kidney, the doctors would suggest undergoing surgery. The surgery procedures include extracorporeal shock wave lithotripsy, open surgery, ureteroscopy, lithotripsy, and percutaneous Nephrostolithotomy. In extracorporeal shock wave lithotripsy, shock waves are used to break up the large stones into smaller pieces. But it is not much effective for cystine stones, because the shock waves only break it into smaller pieces, but does not make the pieces completely soluble. In nephrolithotomy, a tube or special instrument is passed into the patient's body. This instrument is used to take out the stones from the kidney or to break them apart. The cystinuria does not affect other parts of the body. It rarely leads to kidney failure.

Who is eligible for the treatment? (When is the treatment done?)

The symptoms are found in people between the age of 10 and 30 years. To get cystinuria, the person must inherit the defect from both the parents. Sometimes even infants get cystinuria. To undergo the operation, the patient must have large kidney stones. The surgery is generally done after the age of 20 years. Patients with stones in the upper portion of ureter can undergo the treatment.

Who is not eligible for the treatment?

Pregnant women cannot undergo the treatment or the surgery. Patients with high blood pressure or high blood sugar or urine sugar are advised to monitor their blood and urine sugar level and keep them under control, in order to undergo the surgery. People taking blood-thinning medications cannot opt for PCNL (nephrolithotomy) treatment. People who are over weight cannot undergo lithotripsy. Individuals who have blood clotting problems are usually advised to opt for medications or ureteroscopy. People who have on-going urinary infections are treated for their infections first, then advised to opt for surgery.

Are there any side-effects?

Some side-effects are observed after the treatment. Mild back pain and bladder irritation are some of the common side effects. The patient may get frequent urges to urinate. Blood in urine is also commonly observed in the patients. Another common problem is the discomfort of the skin closest to the skin, where the stone was targeted, as shock wave causes some uneasiness or pain in the skin. In complicated and rare cases, severe bleeding may occur. One in almost one lac surgery is known to affect or damage the kidney. In case any patient reports any other complexity after undergoing the treatment the patient is advised to consult the doctor immediately.

What are the post-treatment guidelines?

After the treatment, the patient much takes excess care of themselves. This is because the medications nor surgery provide a permanent solution. The cysteine would reoccur again in the near future. Only with age, some people find that the stones are not forming frequently. So, proper care must be taken to avoid or minimize the formation of stones. Even after surgery, the patient must undergo urine tests and scans at least every 2 years. The patient must opt for proper diet, drink loads of water and reduce intake of salt, junk, and salty food. The patient must not take calcium or vitamin-C supplement.

How long does it take to recover?

Depending on the size of cystine, the duration of treatment would vary. Most of the stones can be cleared in the single procedure. But if the stones are bigger in size and more complex, more than one procedure is needed to completely remove the stone. Most surgeries consist only of an hour or two. After the surgery, the patient is required to stay overnight in the hospital. Within a week, the person would be able to resume their daily activities. The medications must be taken properly and appropriate diet must be followed strictly for the next 6 months. For open surgery, the recovery period is 10 weeks.

What is the price of treatment in India?

The price of treatment varies depending on the hospital, doctors and the kind of operation. Cost of general ESWL (lithotripsy) ranges between 15,000 to 35,000 depending on the size and nature of the stone. Laser and holmium lithotripsy procedures cost around 50,000 to 80,000. Nephrolithotomy and ureteroscopy treatments cost around 75,000 to one lac rupees. Open surgery costs around 40,000 to 70,000 rupees.

Are the results of the treatment permanent?

Generally, the treatment does not provide permanent results. The stones mostly reoccur. The stones occur commonly in the people of age below 40 years. The stones occur less frequently with age. Stones that are formed between longer periods can be dissolved using tablets. If the stones form frequently, they cause a blockage in the kidney. This needs to be treated through surgery. If the stones are present for longer duration inside the body, they may cause an impact on kidney function. So, it is better to treat them, as soon as possible to avoid pain and kidney dysfunction. The surgery is undergone by the patient to break the larger stones or to remove them. The surgery does not assure that the stones formation can be prevented. No treatment is there at present, which can cure cystinuria completely.

What are the alternatives to the treatment?

If both the parents have cystinuria, there is 90% chance that their child would inherit it, as it is a genetic disease. It is hardly possible to prevent cystinuria in those people. But, at the initial stage, the person need not undergo surgery. There are many alternatives to the surgery. The person can avoid cystine formation by regulating the pH value of the body. This can be achieved through proper diet and reducing the intake of food with high acidic content. Medications can be taken to dissolve the stones in urine. Examples of oral medications include D- penicillamine, and alpha- mercaptopropionylglycine. Reducing the salt content in daily diet and drinking loads of water or liquid would also prevent the formation of cystine.

Popular Questions & Answers

I am 27 years old male. In my left kidney, there is a stone of 6*6 mm. Stone is in middle of kidney. I am drinking more than 5 litres water daily.

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Hi, take Homoeopathic medicine Berberis Vulgaris Q, 15 drops with water twice daily. Hydrangea Q, 15 drops with warm water once daily in the after noon. Take Ayurvedic medicine Neeri syrup , 2 tsp twice daily. Take Cantharis 30, 5 drops once daily...

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Kidney stones form when your urine contains more crystal-forming substances — such as calcium, oxalate and uric acid — than the fluid in your urine can dilute. At the same time, your urine may lack substances that prevent crystals from sticking to...
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Recently one of my relative admitted in hospital due to kidney stone, may I know the reasons for kidney stones gets develop in human body.

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Hello. Kidney stones often have no definite, single cause, although several factors may increase your risk. Kidney stones form when your urine contains more crystal-forming substances — such as calcium, oxalate and uric acid — than the fluid in yo...
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How much water one should have daily? Why kidney stones are formed? If it is detected in early stage what medicine is required? What are the diagnostic process for knowing whether the stone has been been removed?

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Hi. One should take at least 10-12 glasses of water in a day (which may vary as per season or climate). Hello. Kidney stones often have no definite, single cause, although several factors may increase your risk.Kidney stones form when your urine c...

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Lemon juice is vitamin C-rich juice and may even dissolve kidney stones, yet studies remains inconclusive on these claims. But, studies does agree that lemon juice may support kidney health but on the other end lemon juice is by no means a cure al...

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Post Graduate Course In Diabetology,CCEBDM(DIABETOLOGY) & CCMH ( CARDIOLOGY)
General Physician
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