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Pain Management Specialist for Chronic Kidney Stones?

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Old 05-21-2010, 03:09 PM   #1
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Pain Management Specialist for Chronic Kidney Stones?

Hi everyone,

Thanks so much in advance for your help with my problem. I have some chronic pain issues that I need to address, and I was wondering if anyone else also has this particular problem.
I am an older teenager who has been developing excruciating kidney stones for almost two years. Lately, Iíve started forming them about twice a month. Overall, Iím in pain for at least 75% of the time, and itís making it difficult to keep up with my responsibilities. Iíve tried to prevent their formation using every natural remedy, OTC painkiller and nutritional supplement, all with no success. The only way Iíve ever been able to alleviate my kidney stone pain is with IV Dilaudid, OxyContin, or just the immediate-release oxycodone tablets.
However, itís EXTREMELY hard for me to convince my primary care doctor or the ER physician to give me anything other than Toradol and two daysí worth of Vicodin. In addition, I feel as though my entire health care team immediately characterizes me as a liar and drug-seeker, as itís uncommon for adolescents to form kidney stones. My mother and I have told them numerous times that the current medications are ineffective, but nearly all of the physicians who have treated me share an unreasonable phobia of prescribing stronger narcotics.
As a result of the negative experiences Iíve had at my old HMO, I am considering treatment with a pain management specialist. Although it appears that most pain clinics are more accustomed to treating pain caused by arthritis, fibromyalgia, and musculoskeletal injuries, I am hoping to find a pain management physician that is familiar with kidney stone pain and amenable to my requests as a patient. Out of curiosity, have you or anyone you know gone to a pain specialist for kidney stones?
Since Iíve never been treated by a pain management physician, Iíd really like to hear about othersí experiences, and what kind of evaluation/treatment to expect on my initial visit. In addition, it would be wonderful if anyone here knows of an understanding and cooperative pain specialist in CA, OR, or WA.


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Old 07-22-2012, 01:59 AM   #2
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Re: Pain Management Specialist for Chronic Kidney Stones?

I feel for you! I am going through the same thing. The Urologists I have had have been useless. And Tordal pain med is crap. Norco is only prescribed med that semi- works for me. In a perfect world they would give me dilauded - works great. I know my doctors dont refer kidney stone patients to Pain Management doctors. I am researching going to a Chinese Healer, accupuncture, etc. Maybe they won't make me feel like a drug seeking weirdo like the doctors do. I wish you lots of luck and hope you are able to get some pain relief. If you find a hood pain specialist in CA, let me know! Will do the same.


Old 11-23-2012, 03:26 PM   #3
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Re: Pain Management Specialist for Chronic Kidney Stones?

I am 33 and I have had this same problem. It all seemed to happen 3 years or so ago. I have had chronic left side pain caused from this. My PM doctor says she thinks that the tube is damaged from passing all the stones and the scar tissue is hard, making anything that touches it be painful. Due to all my stones in that kidney, she said I am probably passing small fragments at all times. There is a dye test the urologist can do to check this.
As far as the stones go, I have been to alot of urologists and none of them can tell me why I have all these stones. I have had 4 tested and was told "make up is normal for my enviroment".. Really? That doesnt help me at all! Of course I was given a lot of suggestions on how to prevent them, by friends and family (I even ate beets, YUCK!) and none of them helped.
I finally found a great PM doctor and she has helped my pain alot. She actually cares about me and wants to help. I know most doctors are hesitant to prescribe medication for a reason they can not see, so just keep looking until you find a doctor who will listen. I went through this for the last 3 years and I finally found one. Good lluck, kidney stones are SO painful!! No one should have to suffer through them!
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Old 11-27-2012, 08:11 AM   #4
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Re: Pain Management Specialist for Chronic Kidney Stones?

I pass my first kidney stones in my 19. Took me more than one year and about 5 episodes of pain. Went to ER 3x. It was like rounded small mass of salt. I press it between my fingers and it powderized. Another bothered me when I was 23. It took me almost a year to pass it with the help of shock wave. The stone was stuck at the end of the ureter since ureter is shape like cone(narrowing down). Since it was at the end of the ureter, the Shock wave did not break the stone, the stone just fell in the urine bladder. I pass the stone in one piece. It is shape like a rice but a little bigger. The one end is white hard and smooth like teeth, and other other part is coarse and black. My doctor says 60% calcium and 40% oxalate. My x-ray says that I have remaining stones in both kidneys. Now at 31, after 8 years, Another one is bothering me. Here it is again, shouting all bad words I can't think of.

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