litho vs waiting untell there is one passing

[maggysue]

I'm new, I have had stones for over 25 years,and uti's all my life.the older I get the more stones I have.10 years ago they said I had MSK. I'v been through most every thing. I have had a good few years,I guess they were just setting there growing.Just a few weeks ago,One really big one got stuck,so I had the basket done,the DR said I needed litho on both sides,I had my left side done today, another DR from the same office did the litho and he tells me I should stop doing litho that it's better to just leave them alone,I also have RA, That DR will not give me the meds I need because he's worred about keeping my kidneys healthy.so now I'm stuck I don't know what to do with my 40 some stones and my acky bones.I know I never wount one to be stuck agin.That was no fun.I 'm sorry about my spelling,It's to much work to set up the spell check on this thing and my husband has not done that yet.Thanks for your time........maddysue

[punkin1515]

The doc that said to leave them alone is a wise man take his advice. The hand held blasters do the same damage. You need 24 hour urines maybe there is a med that can help your stone formation. I found mine after flying to Chicago to see the worlds best Fred Coe and also Texas to see Charles Pak.
I have one stuck now in my ureter but thepain to avoid the blasters is now worth it to me after many years of easy outs with the Litho. From these blasters my kidneys are 100 time worse.
Did you ever think...yes we are getting older but maybe if we never did the blasters we would be much better. The dust makes so many more stones. After the one I had in 04 NEVER again. It was proved that all the dust made the medullary like concrete. Talk to the doc. that said you were better to wait he will tell you the same. I have also had the baskets they are the way to go.
In todays society its easier less expensive less hospital time to blast. Yhats why they push it so. Good luck. Cara

[ace_of_diamonds]

Hi maggysue,

My uro wants to blast mine - he couldn't be sure whether they were in the medulla or renal pelvis but wanted to blast away anyway! I took it upon myself to go and get an IVP and renal U/S to check the position because looking at others experiences I really didn't want the extra pain especially if they are in the medulla.

I can't be of more assistance but wanted to lend my support because I am in the same position as you...........being unsure of what is best.

Best of Luck, let us know what happens

ace

[MSKshelly]

Really the decision to do anything or not depends on your quality of life.  If you only
have pain when the stones are passing then leave them alone.  I had many years like that and avoided surgeries as much as possible.  However when you get to the point
that you have constant pain and infection that is debilitating then you need to make decisions on treatments that give you part of your life back.

A 24 hour urine is the first step.  However if this too can be deceptive.  I had several that did not show the hypercalturia until I went to Southwestern in TX, and they did a fasting test and then gave me a dose of calcium.  Here they could see though my blood calcium levels went up on 1-2pts my urine calcium more then quadrupled!  They also found that I have a lot of bone density loss already as well.

The other big issue we are finding significant to helping patients is having your Vit D levels checked.  I had to ask and learned mine was extremely low as have most of those on this board who've been checked.  Raising the Vit D levels to a normal level
can help fight infection, pain etc.  However too much Vit D can increase your risk for stones so this should be monitored with a doctor.

For me, at this time last year I was living on pain meds and IV anti-biotics, with my
creatine rate climbing and my GFR rating going down.  BY having the internal procedure to make an impact on my stone burden, the antibiotics were able to penetrate into the kidney more deeply!  Correcting the Vit D levels have helped too.
Now my creatine rate is down my GFR rating is up and I have not been on the IV's for over a year.  If your read my previous posts you will understand my case is a little more complicated.  However we just got back from a working vacation going to Niagra Falls, Vermont etc.  I was able to make the drive, do some gently rock climbing and hiking and play a waterfall.  This would not have been possible last year.

NO ONE  can answer for you what to do, only you know what your living with and what is best for you.  I believe in starting with the last invasion first and using surgery or litho as a last resort not first.  For me the progression to treat the chronic pain and the treatment protocol I used for me looks like this.

1.  Do a 24 hour urine, treating any metabolic issues.

2.  Keep hydrated and avoid large amounts of meat, 6oz approximately a day.

3.  Have Vit D levels checked and bring up to at least 50

4.  Try using long term natural antibiotics like SIlverbiotics from American biotech labs, D-Mannose, etc. Discuss anyting you take with your doctor even naturals and list them on your meds.  YOu can contact me for a link to research on the Silverbiotics if anyone wants it.

5.  Try a long term low dose antibiotic and see if the pain responds. Many of us live
with a chronic or low level biofilm infection that is harbored in the calcifications.  I am not into using antibiotics so for me to live on them I HAD TO HAVE PROFF, of the
the chronic infection and the difference being on them makes in my life.

6.  Using the procedure done by Dr. Wolf or Litho.  I prefer the first after personal experience and research but again that is a decision each must make with their doctor.

Again, only you know what your living with daily.  MY personal goal is to be able to function enough to be a mom etc.  What that requires for each of us varies!

Shelly

[maggysue]

I go back to the Dr in a week ,I'm still not sure what i'll do,thank you every one, you gave me a lot to think about,            maggysue