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Seeking Advice, Answers, Recommendations, etc.

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Old 02-13-2013, 05:19 PM   #1
Join Date: Feb 2013
Location: Houston, TX
Posts: 2
justjack85 HB User
Post Seeking Advice, Answers, Recommendations, etc.

Hello, my name is Jack and this is my first post. I'm new to this whole idea of discussing my issues on a discussion board. Hopefully, I can find someone who knows what I'm going through and may be able to offer suggestions or give me some answers.
I am 27 years old and live in Houston, TX. I have been dealing with chronic kidney stones for almost 13 years now. I couldn't even tell you how many stones I have had. I would guess at least 100, if not more. I have had them since I was 14. I have had 20+ lithotripsies(I stopped counting after 20. I may be closer to 30 now), and I have had 2 ureteroscopy procedures(I will never do that again). Within the last year my pain has just grown considerably worse. In and out of hospitals so many times throughout the year and so many ER visits. I have had over 20 CT scans within a year, because most doctors won't even help me unless I do a scan. I have been on diets and medicine and nothing is slowing the production of my stones. After my last scan, I currently have around 12 kidney stones in both kidneys. As you might have guessed, this is becoming extremely tiring.
Last summer, I had my second ureteroscopy, and my urologist discovered that the tissue inside my kidney is calcifying. He says that is what is causing me this excruciating pain, and that there is no way to remove it. The only way would be to actually cut into my kidney and remove it, however he said that was an old surgery and was not sure if anyone would even do it. Also, that it would damage my kidney significantly. I tried seeing if I then could qualify for pain management, but I was told no because my condition is "nonspecific". For now, I have an appointment schedule for this doctor in Dallas, and my urologist is hoping she will put me into her study and find the cause of my stones and put a stop to it. Unfortunately, it will not cure me of the calcification and stones I currently have.
I apologize for the novel I have written, I just wanted to be specific because some doctors make me feel like I'm crazy for the pain I'm experiencing. If anyone knows what I am talking about, or is going through the same thing I am then, maybe someone could give me advice or a few suggestions. I really appreciate the help! Thank you!

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Old 02-13-2013, 11:52 PM   #2
Join Date: Feb 2013
Location: New Jersey
Posts: 4
Limidu43 HB User
Re: Seeking Advice, Answers, Recommendations, etc.

Has anyone mentioned Medulla Sponge Kidney (MSK) ? Also what kind of stones do you have? I'm seeing a nephrologist at a teaching hospital who specializes in kidney stones. I know you doctor said the calcifications are causing damage but did you know lithotrpsies also cause damage as well as the stones themselves? I have had stones over the years but last year I had one that got stuck kn the way down and I'm paying for it ever since. I developed a ureter stricture after a ureteroscopy, which are hard to permanently fix. Right now I'm in a lot of pain because I may have restrictured. I go later today for tests. Sorry I'm rambling. My suggestion is to get a urologist and nephrologist who specialize in stones at your nearest teaching hospital. Make sure they do at least one 24 hour urine from Litholink testing company. My nephrologist told me not to even bother changing my diet until after that 24 hour test. After the test, I was told to drink 80 ounces of water a day and to just stay away from the big oxalate culprits like spinach and chocolate. I feel your pain and I hope you find a solution.

Old 02-15-2013, 08:05 PM   #3
Join Date: Feb 2013
Location: Houston, TX
Posts: 2
justjack85 HB User
Re: Seeking Advice, Answers, Recommendations, etc.

I have never even heard of MSK. I'll ask the doctor I'm going to see at the end of March. She is at a teaching hospital so, hopefully she'll have some answers for me. I have calcium oxalate stones. Yes, I figured lithotripsies could cause my kidney damage, but my doctors never seemed concerned about the amount of them I had. I'm so sorry to hear about your troubles! I really hope they can do something for you, and don't be sorry for rambling! It's a comfort to know someone out there has an idea of the pain I've gone through. Thank you so much for the information! Take care!

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calcification, kidney stones, pain

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