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!