[natp]

I currently have multiple stones in both kidneys and am scheduled for yet another litho. does anybody know if multiple lithos cause kidney damage? or an increase likelyhood of recurrence of stones? or scar tissue build up?? I have both uric and calcium oxilate stones and am very sick of this routine that has been going on for 16 years now.

[cathrine001]

I have kidney stones, and suffered through 3 lithotripsies. I say that I "suffered" because the stone in my right kidney was the size of a pecan. Three lithotripsies later, I still have that stone, though it is considerable smaller. Along with the three lithotripsies, I now have diabetes and high blood pressure....and multiple stones in both kidneys.

This is what you need to realize the following about this procedure:

1) In 2006, information was published regarding damage to the pancreas, which is connected with the onset of diabetes. You can research this online - it isn't difficult to find.

2) In 2006, the same above-referenced report has identified a connection between lithotripsy and the onset of high blood pressure. This is also documented online.

Keep in mind that lithotripsy is a procedure which requires strapping the patient on the table; the reason for this is because the shock waves used in ESWL (Electonic Shock Wave Lithotripsy) are so strong that the patient can fall off the table. I know this to be true, because I asked why they were going to strap me in, and this is what the doctor told me prior to surgery. This isn't the kind of thing that doctors lie about, but most people do not ask why. I now ask "why" about everything, so I am now the urologist's worst nightmare because I demand answers.

Also keep in mind that lithtripsy isn't for a large kidney stone. While definitions of a "large" stone may differ, if the stone is larger than 2-3 mm, there is concern that the stone will lodge in the ureter. I currently have a 7mm stone lodged in my left ureter; I have no insurance, I am unemployed, and I am going through hell trying to find financial assistance for kidney surgery.

Lithtripsy is best for stones smaller than the size of the ureter. If your stone is larger, you may want to seek a second opinion. While multiple lithotripsies may seem like a logical approach, I have met patients of the same doctor I used, and they have been having lithotripsy surgery for 20 years or more. Needless to say, when I heard this, I never went back to either surgeon who performed this procedure.

The doctors where I am living are cavalier about the procedure; the last experience included the doctor flirting with the nurse and drinking coffee while a technician did the work -- a technician who was not a doctor, and was trained for two years. What an eye-opener that was.

My best advice: get a second opinion, and even a third opinion. Ask lots of questions, and most of all, find out the size of the stone. Seek out the opinion of urologist at a large teaching hospital, instead of the local urologist who makes a significant amount of income on the locals who have entrusted their medical care to someone who keeps doing the same procedure on multiple patients, over and over again.

The next time you are at your first urologist's office, ask the patients in the waiting room if they are having lithotripsy surgery, and if so, how long have they been coming to Dr. X -- the answer may surprise you.

[natp]

[quote="cathrine001"]I have kidney stones, and suffered through 3 lithotripsies. I say that I "suffered" because the stone in my right kidney was the size of a pecan. Three lithotripsies later, I still have that stone, though it is considerable smaller. Along with the three lithotripsies, I now have diabetes and high blood pressure....and multiple stones in both kidneys.

This is what you need to realize the following about this procedure:

1) In 2006, information was published regarding damage to the pancreas, which is connected with the onset of diabetes. You can research this online - it isn't difficult to find.

2) In 2006, the same above-referenced report has identified a connection between lithotripsy and the onset of high blood pressure. This is also documented online.

Keep in mind that lithotripsy is a procedure which requires strapping the patient on the table; the reason for this is because the shock waves used in ESWL (Electonic Shock Wave Lithotripsy) are so strong that the patient can fall off the table. I know this to be true, because I asked why they were going to strap me in, and this is what the doctor told me prior to surgery. This isn't the kind of thing that doctors lie about, but most people do not ask why. I now ask "why" about everything, so I am now the urologist's worst nightmare because I demand answers.

Also keep in mind that lithtripsy isn't for a large kidney stone. While definitions of a "large" stone may differ, if the stone is larger than 2-3 mm, there is concern that the stone will lodge in the ureter. I currently have a 7mm stone lodged in my left ureter; I have no insurance, I am unemployed, and I am going through hell trying to find financial assistance for kidney surgery.

Lithtripsy is best for stones smaller than the size of the ureter. If your stone is larger, you may want to seek a second opinion. While multiple lithotripsies may seem like a logical approach, I have met patients of the same doctor I used, and they have been having lithotripsy surgery for 20 years or more. Needless to say, when I heard this, I never went back to either surgeon who performed this procedure.

The doctors where I am living are cavalier about the procedure; the last experience included the doctor flirting with the nurse and drinking coffee while a technician did the work -- a technician who was not a doctor, and was trained for two years. What an eye-opener that was.

My best advice: get a second opinion, and even a third opinion. Ask lots of questions, and most of all, find out the size of the stone. Seek out the opinion of urologist at a large teaching hospital, instead of the local urologist who makes a significant amount of income on the locals who have entrusted their medical care to someone who keeps doing the same procedure on multiple patients, over and over again.

The next time you are at your first urologist's office, ask the patients in the waiting room if they are having lithotripsy surgery, and if so, how long have they been coming to Dr. X -- the answer may surprise you.[/quote]


Dear Catherine001
thanks for your words they are valued. I just had a stint put in the left kidney to try to drop a 7mm stone and am going to have litho on wednesday for that stone and a 9mm in that kidney. I also have a 7mm in the right kidney that they won't do at that time, probably because they couldn't make as much as a second surgery. Like i've been in so much pain now what would be alittle more to get it over with.
thanks again
natp

[cathrine001]

There is danger in working on more than one kidney at a time, so I am sure this is an ethical reason. Since the procedure is shocking to the kidneys, it is too risky to shock both kidneys at the same time.
I will keep you in my prayers that you find an answer.

[natp]

Thanks again you are very wise. I just get sarcastic from frustration. this will be number 9 in litho's with 2 ureteroscopies for stone removal from the tubes. But if this is my only problem considering what else people have or the worst stones I'll be OK! Prayers for you also Catherine001

[cathrine001]

Nine lithotripsies...I am so sorry, and I cannot imagine how you feel or how much pain you must be experiencing.

My kidney stones occurred because I took too many ibuprofen after breaking two vertebrae while riding a horse...it wasn't just a few too many ibuprofen over a week or ten days -- it was many, many ibuprofen for chronic back pain after the accident, followed by seven ruptured discs, all rupturing one at a time.

I was ingesting 40-60 Advil everyday since 1987 because I cannot tolerate narcotics; now I have this horrendous issue with kidney stones because of the excess Advil, and it is one form of kidney stones that isn't as common as some others, but its still kidney stones. I am now physically handicapped, and was fired five months ago because if my disability (it's a long story). I am looking everyday for work, but so far, no luck, but I keep moving forward. In the meantime, I am building a gemstone jewelry business and hopeful that it will become something to support me at some point in time. Sadly, unemployment does not last forever. I am also a freelance writer, so I am also hopeful someone will take notice of my efforts. I have a dreadful keyboard that is to blame for my typos, and I hate having no spell-check here in this forum.

You are in my thoughts :)

Cathrine001

[natp]

When you were working did you ever go out on disability for the stones or treatment. I never have but am considering it this time due to the pain and my high demand job as a nurse at a very busy lab.which involves almost 10hrs. of standing and bending and lifting. Also it is my big problem when I can't drink enough to stay hydrated. My stones came from too many tums when I was pregnant with my 2nd son 16yrs ago. I ate jars of tums!! very bad unabsorbable calcium. But what did i know i had indigestion with a drink of water. And according to the old wives tale I DIDN'T have hairy babies, they were baldies and blondes!!

[cathrine001]

My disability is ruptured discs, I have some learning disabilities, and I have diabetes; but have never been on disability. I have heard it can take months, or even years, to get a determination and SS turns you down at least twice before you can appeal with an attorney.

The key regarding disability has to do with whether or not you are able work. Contact your local Department of Rehabilitative Services and ask them to help you get a workplace evaluation, and then get some work accommodations in place. You will need statements from your doctors to ease the evaluation process.

Since you have a nursing background, you may be your own best case manager; however, if your state offers the services of a medical case manager, this might help coordinate many things on your behalf. I just discovered this last week and am awaiting to hear from them for assistance. I am out of work and have no insurance, so I need all the help I can get.

If I can help out, let me know.

[mctripat]

what you need is a kidney stone prevention program. Many doctors do not tell you about this.
You need your kidney stones analyzed, which it sounds like yours were and a 24 urine catch test.
Were you ever advised to go on the low oxolate diet?

Not all doctors really understand the 24 urine tests results either. If you have the test and are told it is unknown why you have kidney stones, the doctor does not really understand interpertation of the test. The results can be looked at several ways. Usually a university urology dept has at least one doctor who knows what they are doing.... From the test, it can be determined if medication will help stop or reduce stone formation and what dose of various drugs used you need. I was told I needed one annually. It is not an expensive test either.

come to yahoo and join our kidney stone board there... we have a doctor, adviser who helps us a lot. the board is very active most of the time. Also go to http://www. kidneystonebook. net Order the kidney stone handbook by Gail Saviz and Dr. Stephen Leslie... a new edition is just coming out and it is around $20.... I have had kidney stones since 1965 and it helped me.

I think most of the stuff about diabetes and lithotripsy has been proven false. If you come to our board you can search there. I do not remember the answer exactly.

ESWL is usually the least invasive procedure.. but if you are looking at how long you are anethesized that may be another issue. If you do not have a general anesthetic for ESWL then that is the best they can do... I know this all ties into your blood pressure. Sometimes doctors can spend hours trying to get kidney stones out, while doing ESWL or utererscopy... but in reality they can get them out easier or faster with a PCNL. Why do they not do that then? Because there are other risks: due to the incision, you may have to stay in the hospital a couple of days to a week, there is more risk of infection, you might have a nephrostomy tube (like a catheter only it comes out of your side or back and drains urine too), it may relate to other kidney stone procedures you have had, things insurance companies say... But you may not need to be anethesized as long.

I have had 2nd and 3rd opinions that did not clarify my problem any more... normally what is advised is to go to the urology dept at a medical school that has a urology residency program, either close to where you live, or one you are wlling to travel to. These are the places research is done and new procedures, techniques and medical equipment are tested and developed. Then this filters down to urologists in private practice... they are trained by these doctors eventually. You can go to the university web site without much trouble. Then go to school or college of medicine and surgery department or division and finally urology department. You can call them and ask about urology residency programs or find that on the web site somewhere.

Trish

[natp]

Trish
thanks for the excellent recommendations i will surely follow them up and will go to the website on yahoo. what do i exactly type in to get there, to the forum.?
natp