Hey Vidican3...so sorry to hear all you are going through! It is very typical of this condition and unfortunately it may be very hard to find a doctor who knows, understands, and will be willing to fix this problem for you. Your story sounds just like mine. It took two years to get me fixed, but I kept on going until I found a doctor who would listen and help me. I'm not sure if you can email me straight from this website but if you would like to email me to ask any personal questions I would be happy to answer you. My email is firstname.lastname@example.org . I've been through it all! The nephropexy did fix my problem and my life is back to normal. I can let you know where I live and who my doctor was. It's funny because I just saw my urologist yesterday for a four month follow up and he said "I haven't heard from anyone from your kidney blog yet!". Mine was the first nephropexy he had done but I had good info that he was an excellent surgeon and he is! I had asked him if he would be willing to help others with this problem since it is so hard to find a doctor to help and he said sure. I had even gone to two major medical school university hospitals and saw urologists there who hadn't even seen a case of nephroptosis and pretty much laughed me out of there saying there was no way that it was the cause of my pain. I just want to say that the visit to a nephrologist may just be a waste of time, because all they want to do is treat kidney function disease, and since this doesn't really affect the kidney function so much there isn't much they will do. A urologist may be a better choice to go to.
Just know that you are not alone, and NOT CRAZY!!! You have a real condition and it is fixable. Keep up the fight for what you know is going on and hopefully you will find a doctor who will take you seriously. If you want to know any of my information of who my doctor is, or if you find a doctor who will at least talk to my doctor I am sure that he would be happy to discuss my case with them.
Hello MoTN313, I am now 4 months post-op and I am pain free and back to a normal life. Every now and then I get a small pain on my right side but it never stays and they are so few and far between that I consider myself healed! I am even back to working out 4 days a week at the gym. And I have gained 3 pounds. I know this is the most frustrating condition and I'm sure not everyone has the same outcome from surgery, but I like to think that I just had the best urologist in the world that actually listened to me, took what I was saying to heart, and was truthful in saying that he didn't know for sure that doing the nephropexy would solve my pain but still agreed to do the procedure after knowing all I had been through up to that point.
I wish everyone suffering from the terrible physical and mental effects from Nephroptosis could find someone who, if nothing else, is willing to listen and try to help. I don't mind sharing any aspect of my journey through this with anyone so please feel free to ask me anything. Good luck!View Thread
Hey Mike, I had my surgery 1 week ago. Although I am still sore, all went very well. He did the surgery with the DiVinci Robot and I stayed 24 hours in the hospital. I was actually up walking that evening, just to go to the bathroom. But up walking the halls the next morning. I am feeling better everyday. It will still be a while before I know if the surgery is the answer to all my problems since my pain came mostly from being active and I'm not going to be very active for a little while. But I have no regrets about my decision to have the procedure done and I really believe it is going to benefit me in the long run. Keep us posted on how you are doing. It is tough to find people who actually understand what this is all about and what it does to us.View Thread
Hey Mike, I am actually having my surgery tomorrow morning. I have the utmost confidence in my doctor and pray that this will solve my problems. I will let everyone know how it goes. Are you problems still being helped by diet? I hope you, and all that are following this and going through this crazy situation, are doing well. Wish me luck!View Thread
Hey MikeSmi I had two renal scans, the first just laying down because the doctor didn't know what he was doing, and the second half laying down, half sitting up. Of course the first one was normal, and the second one the doctor said there was no obstruction and that it was just about a perfect scan. He even showed me the picture. This was a urologist at the University of Florida. After he left I asked his associate that it was the laying down portion that he showed me, and what were the results of the sitting up. He kinda blew me off and of course they did not want to help me since my renal scan showed normal. But when I got a copy of the scan from them and looked at it myself when I am sitting up my renal function drops 7% on my right side. I know this is not a great amount, but it shows that something is going on which they did not tell me about. My purpose on telling you this is that they won't do anything without an obstruction, like you said. But it might now be obstructing at the very moment that the scan is taken. I believe it gets into a different position at different times and that is what either causes me to be in pain or not. The renal scans were the most unconfortable tests I had taken and would not want to do it again. I finally found a local doctor who is going to do my nephropexy. He said he didn't even know why they did renal scans since it is obvious on my IVP that my kidney is dropping. He agreed that if it is not in a bad postion at the moment the scan is taken it won't show anything. Hope you get the help you are looking for. It is so good to have others going through this journey because it is next to impossible to have anyone else understand what we are going through. Good luck and keep us all posted.View Thread
I have an IVP that shows that I have nephroptosis and have been having symptoms for 1 1/2 years, but I can't find a doctor in Alabama that even knows anything about this condition or believes it even is really causing my problems. I just saw a urologist today who is an associate professor of urology at the University of Alabama-Birmingham who hasn't ever every seen or dealt with a patient with this problem. I saw him since the local urologist that I saw had never dealt with this problem, or any of the other 9 or 10 urologists in town. I didn't see them all, just called their offices. I have had an ultrasound, CT, Hida Scan, colonoscopy, small bowel follow through, IVP (which finally showed the problem) and today a renal scan that was once again done laying flat which "surprisingly" showed no renal function problem. I told the urologist today (who once again is an associate professor at the university hospital) that it wouldn't show any problems unless it was taken standing up which makes my ureter kink. He said that is true and that he probably should have had it taken upright and that I would need to have it taken over. But since he had never even treated a patient with this or has never done the surgery I know he wouldn't be fixing it for me. I even had my gallbladder removed last year because they thought that might have been the problem. I need to find a doctor who understands what is going on and who can help me. How can I go about this?View Thread
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