Hi...I have a few questions on my stones and wondering if someone could offer some advice...

I have 4 or 5 stones and one is large at 2.4 cm.I have had multiple opinions on this one and the most credible docs I have seen say to leave it in, unless it gets really bad. They say I will need 5 or 6 of the perc through the back things, to get the one stone out??? Saying I will have more damage from procedures than from the stone.

I know that I have read of someone on here who had this and she lost a kidney?

Why wouldn't they just open me up and take stone out vs this perc thing 5 or 6 times?:confused:

I think the stones are calcium oxalate because I have found cat litter looking things in the toilet, and have double oxalate levels in blood tests. But, I also have high uric acid...

I have quite a few other health issues that need to be taken care and then hopefully this stone stuff will stop or at least slow down.
So, I have been trying to put this off, and not really watching what I eat, other than eliminating the obvious things like tea, etc.

Last week, I had a burst of energy and decided to see a nutritionist and find out what I can eat. Which leaves me with quite a bit of nothing. She said I can not have grains. Which causes a big issue because she wants me to eat white starches, which disturb my blood sugar.

Has anyone figured out what we can eat?

Any thoughts on the stone situation?

Thanks a lot!
Anne

Anne,

My urologist is wanting me to wait as well only because she thinks mine are made mostly of uric acid and she is trying to dissolve them. I do know that they grow as the one in my left kidney has done. It is now up to 8mm which is not as large as yours but it is still too big to pass. It seems the pain has subsided a bit in my kidneys though so I am waiting to see.

Did they do a KUB to determine that yours are calcium? If you have high uric acid did they put you on something to try and dissolve them? I know it is not good to wait too long. My urologist gave me the choice to have them out or wait and I chose to wait due to other circumstances in my family right now.

I would certainly seek another opinion though if you are having doubts to their credibility. Allie is right, one kidney would be the one to ask she had to go through this as well and ended up losing a kidney because of stones.

Terry

Hi Allie,

I first went to a local doc who said I needed it out. I happened to be going to a clinic in Scottsdale for other issues and got a second opinion there. She said she would leave it in until problems started, and to make sure I have a qualified person do the perc procedure as it is in a weird place. So, I just chose to ignore it until I had the my endocrine issues taken care of. Fast forward 2 years I started having pain and went to a urologist here and he said we have to cut part of the kidney off. But, he was not comfortable with my having the procedure locally, because of radiologists so I needed to go to a stone center in Los Angeles... Went there and he is the one who told me the 5 or 6 percs. He told me to just deal with the pain I have occasionally if possible. But, I need to get a particular Ct scan the way he wants it done and no one will do it here locally, and he and his establishment were not covered by insurance, but I just changed and now he and his hospital are. But, I am preparing to have pituitary surgery probably in late July or early August. So, trying to put it off again. Plus, all these scans they want me to have have been shown to be bad for my bone disease as radiation has in few cases turned the disease into a cancer.

I think I will join the circus.:jester:

After that long winded explanation...sorry....What would you do?


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Hi Terry,

No, I have not had a KUB only IVPs and CTs.

I have been given no medication for this except someone gave me a blood pressure med, which he said had something to do with the stones. But, my blood pressure gets very low at times, and after a couple days I had to stop it.

Is the uric acid med you are using helping to dissolve them?

Thanks for you help!

Anne,

Actually yes. My uro put me on allopurinol and potassium citrate to try and see if we could get the stones smaller. Of course she told me it would not dissolve them completely because she could see some calicum build up on the KUB x ray.

I understand about having multiple issues and trying to take care of them first. I too am having endocrine issues and am currently being tested for cushings. I am wondering since you are having pituitary surgery is that what you were diagnosed with? We had been talking about if the two could possibly be related....

I hope you are able to resolve this issue. I know it is no fun..

Terry

Yes, Terry, cyclial cushings. I am in the process of scheduling surgery at MD Anderson.
The two are definitley related.

I also have this disease called fibrous dysplasia that is related to McCune Albright syndrome, which is directly related to endocrine issues.

I am not sure if getting rid of the cushings is going to eliminate all the stone problems, because I really can no longer tell what is related to what.
And of course there is absolutley no doctor I can find that can connect the dots... My pituitary endo is great, but this is not his thing, urologists want me out of the door, and bone disease docs argue about cushings.
So, my plan had been get rid of tumor and see what is left.

How are you doing in your cushings diagnosis? It is very long tedious horrible process, I wish on no one. Are you seeing a good endo that can speed the process along?

Anne

Anne,

Actually I have a wonderful endo that is being patient with me. Even after I had one 24 hr urine test come back normal for cortisol we are doing another along with other bloodwork. She is being very thorough.

I wish you could see my uro. She is absolutely wonderful. She does not think any question is stupid and actually takes the time to explain things to me.

Terry