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nephroptosis
I have been suffering for 15 years with what I think is nephroptosis, I am allergic to iodine , so Ivu is out of the question. For me at least ..won't chance another reaction. Does anyone know how to be tested for this by ultrasound? No tech that I've spoken to says they've ever done one with a person in the erect position. I think I have been having diet's crisis. Nothing shows on CT in the supine position...help anyone? Been treating for IBS but don't think so.
My 23 year old daughter has been struggling with this for the past two years. I have been in touch with a woman in England who had a successful laparoscopic nephropexy. She says that you need to have two scans; one standing, one lying down:
." If you mean your daughter has a hypermobile kidney then that is what I had and had it fixed. The pain is caused by the kink at the junction. If it is this, I have unpublished research that shows that Symptomatic Nephroptosis (SN) can then lead to lphs. This is what happened to me. I don’t get haematuria either. One of the reasons I am on a mission to raise awareness is that if SN is picked up early then lphs won’t ensue..... I had my hypermobile kidney fixed by Laparascope. It’s called Nephropexy. Home after 4 days. Instant relief of pain in the recovery room!!! It was only that pain was in the other kidney that lphs was suspected. In reality I have Loin Pain Syndrome (LPS). Most doctors don’t know to do a lying AND standing Intravenous urogram. Lying down ones are normal but standing up ones show the kidney drop. Mine dropped 5cms which is the cut off point for surgery in the uK. Really they should go on the level of pain. The instant it first happened I felt that my kidney had snapped and dropped. It took 5 years of tests before it was proved!"
My question, which she couldn't answer, was do you have to be in pain for this to work? In other words, during those times when the pain has subsided, does that mean the kidney is not moving then and would that mean there would be no evidence of the kidney moving?
Dan, do you know the reasoning in doing your scans days apart?
I am also in Wisconsin, so I am eager to hear if UW can help you!
I
." If you mean your daughter has a hypermobile kidney then that is what I had and had it fixed. The pain is caused by the kink at the junction. If it is this, I have unpublished research that shows that Symptomatic Nephroptosis (SN) can then lead to lphs. This is what happened to me. I don’t get haematuria either. One of the reasons I am on a mission to raise awareness is that if SN is picked up early then lphs won’t ensue..... I had my hypermobile kidney fixed by Laparascope. It’s called Nephropexy. Home after 4 days. Instant relief of pain in the recovery room!!! It was only that pain was in the other kidney that lphs was suspected. In reality I have Loin Pain Syndrome (LPS). Most doctors don’t know to do a lying AND standing Intravenous urogram. Lying down ones are normal but standing up ones show the kidney drop. Mine dropped 5cms which is the cut off point for surgery in the uK. Really they should go on the level of pain. The instant it first happened I felt that my kidney had snapped and dropped. It took 5 years of tests before it was proved!"
My question, which she couldn't answer, was do you have to be in pain for this to work? In other words, during those times when the pain has subsided, does that mean the kidney is not moving then and would that mean there would be no evidence of the kidney moving?
Dan, do you know the reasoning in doing your scans days apart?
I am also in Wisconsin, so I am eager to hear if UW can help you!
I
Did you ever find out if you have EDS? I have suspected EDS for years, since I have more than enough signs of all the diagnostic symptoms... bruising, stretching skin, dislocating joints, chronic pain, pelvic organ prolapse, etc. I came to the forum because I too have had a palpable mass under my right rib cage. I've been told that it "just feels like hard muscle" but when I stand, it's definitely moveable. It can push in sort of like a hernia (but a lot larger) and is probably about the size of my small hand... maybe a little less. I am currently pregnant with my 5th baby and I've had this for at least the last 8 years, since after my first baby was born... it hasn't gotten worse, but hasn't gotten better, either. I do have some trouble urinating but that is thought to be simply from my history of bladder and uterine prolapse from the EDS. But I'm thinking... since I already know my pelvic organs "hang" too much and are out of place, why not my kidney, too? I don't want to do much diagnostic work or anything invasive since I am pregnant, but I do want to stop worrying about it for awhile! Any luck with your diagnosis?
I am sad to say it has been just over a year since my last post, and I have made very little progress. However, I am schedule for (2) nuclear medicine scans of my right kidney, 4 days apart on 10/12 and 10/16, at the University of Wisconsin Hospital in Madison. Should my kidney show sufficient mobility, the doctor has already said he would recommend laparoscopic nephropexy to put the kidney back where it belongs. Wish me luck! I will let you know what happens.
So if anyone else has any info they can share i would be so greatful, and i will shortly upload all that I have found that may help you!
Its hard struggle dealing with cronic pain but if those who are suffering the same thing at least know there are others going through it too then it can help.
the first time i found these forums i felt so relieved that I am not just crazy!! And others are having the same symptoms. there is help out there its just not conventionally available yet to everyone.
thanks for taking the time to read my LONG post. I will keep u up to date on my progress.
peace and love to all.
Its hard struggle dealing with cronic pain but if those who are suffering the same thing at least know there are others going through it too then it can help.
the first time i found these forums i felt so relieved that I am not just crazy!! And others are having the same symptoms. there is help out there its just not conventionally available yet to everyone.
thanks for taking the time to read my LONG post. I will keep u up to date on my progress.
peace and love to all.
Hey everyone,
I live in australia, i am a 24 year old thin female. my last 3 years have been so hard with constant pain. At first i could feel a mass in my right side and showed the doctor(i actually work as a receptionist in the medical centre). they didnt know what it was and sent me for a ct. the first ct showed nothing but overloaded bowel as in this position my kidney sits in my back. however as i was still in such bad pain, constipation, heart palpitations everything, i had another ct the following year which showed the kidney sitting in my front abdominal area.(which explains the palpitable mass). none of the doctors in my practice had ever seen or heard of this before so i had to research it all myself. I went to a kidney specialist who also had no idea and basically told me he didnt think that was my problem and that the pain must be neurological, he sent me for an mri, which of course showed no nerve problem. He also told me that even if it was my kidney causing the pain that for the operation they have to cut your whole side open and u end up with more problems than you started with . (he clearly hadn't done his research and had no idea that laparoscopic nephropexy exists). well i was quite dissapointed with this and learnt to live with my pain for another year, however it is now so bad i cannot stand for long, i basically only eat soft food, i have constant throbbing and sharp pain on the right side and down into the groin. i get really bad heart pLpitations and light headed(which i believe must be due to the adrenal glands next to the kidneys). i am at the stage where I must find someone in the world who can test me properly and treat me. I recently had an x ray supine and erect which showed the drop. and i also had an ultrasound which showed the kidney sitting next to my belly button. Something a should also note is that 4 years ago I had a massive car accident which gave me a huge blow to the back, it was after this that i began noticiting my symptoms. I also have a uterine and bowel prolapse and joint problems, i am currently being tested for a ligamentous laxity disorder such as ehlers danlos syndrome which causes weak ligaments which lead to injuries of joints and prolapses. Well what i would like to say is that if anyone else is experiencing anything similar i would like to hear from you. i will start uploading the helpful articles i have found, it seems to me that no surgeons in australia are very familiar with laparoscopic nephropexy surgery for this. I have come across many over seas who i plan on contacting in the next few weeks and hopefully i can save the money to go and try to get treatement there. after this that I began noticing these sy
I live in australia, i am a 24 year old thin female. my last 3 years have been so hard with constant pain. At first i could feel a mass in my right side and showed the doctor(i actually work as a receptionist in the medical centre). they didnt know what it was and sent me for a ct. the first ct showed nothing but overloaded bowel as in this position my kidney sits in my back. however as i was still in such bad pain, constipation, heart palpitations everything, i had another ct the following year which showed the kidney sitting in my front abdominal area.(which explains the palpitable mass). none of the doctors in my practice had ever seen or heard of this before so i had to research it all myself. I went to a kidney specialist who also had no idea and basically told me he didnt think that was my problem and that the pain must be neurological, he sent me for an mri, which of course showed no nerve problem. He also told me that even if it was my kidney causing the pain that for the operation they have to cut your whole side open and u end up with more problems than you started with . (he clearly hadn't done his research and had no idea that laparoscopic nephropexy exists). well i was quite dissapointed with this and learnt to live with my pain for another year, however it is now so bad i cannot stand for long, i basically only eat soft food, i have constant throbbing and sharp pain on the right side and down into the groin. i get really bad heart pLpitations and light headed(which i believe must be due to the adrenal glands next to the kidneys). i am at the stage where I must find someone in the world who can test me properly and treat me. I recently had an x ray supine and erect which showed the drop. and i also had an ultrasound which showed the kidney sitting next to my belly button. Something a should also note is that 4 years ago I had a massive car accident which gave me a huge blow to the back, it was after this that i began noticiting my symptoms. I also have a uterine and bowel prolapse and joint problems, i am currently being tested for a ligamentous laxity disorder such as ehlers danlos syndrome which causes weak ligaments which lead to injuries of joints and prolapses. Well what i would like to say is that if anyone else is experiencing anything similar i would like to hear from you. i will start uploading the helpful articles i have found, it seems to me that no surgeons in australia are very familiar with laparoscopic nephropexy surgery for this. I have come across many over seas who i plan on contacting in the next few weeks and hopefully i can save the money to go and try to get treatement there. after this that I began noticing these sy
1 Comments
Hi...did you end up getting a nephropexy? I am a 63 year old female in Queensland and I am having my op in two weeks.
Hello Pepp,
Any progress since your last post? I am a 50 year male, was always healthy, active and athletic. About 12 years ago I had a massive pain in my right abdomen, and life has never been the same. Over the course of 12 years, this painful condition right below my right rib cage has literally sucked the life out of me. I sought diagnosis from my PCP, and have been referred to a host of specialists. I have been 'non-diagnosed' as depressed, stressed, having IBS, and psychosomatic. I finally found a doctor with the rarest skill set of all: listening. I had him interlace his fingertips with mine, and locate the painful mass under my right ribcage. He agreed that it was not normal, said he thought it was probably my right kidney, and sent me immediately for an ultrasound. The ultrasound tech did confirm that the mass was my right kidney, and I was shocked. He did images while lying on my back, lying on my left and right sides, and while standing. I have yet to actually consult with them on the results of the ultrasound, but have requested to do so. At this point, they want to treat me with a pain management procedure. My body is sending me messages that it is in distress, and they want to suppress them. I think this is something like putting out a kitchen fire by turning off the smoke detector. A diagnosis of Nephroptosis is supposedly a kidney that moves 5 cm or more between the lying and standing position. I think mine moves more in the order of inches! Apparently the surgical fix for this, called nephropexy, "secures the floating kidney to the retroperitoneum", and is somewhat controversial. Several recent articles I have read have expressed great optimism for a laparoscopic nephropexy, showing a high percentage of symptom resolution, minimal invasiveness, and fast recovery times. The downside is that there does not seem to be many medical centers offering this procedure yet. Good luck! I will add to the watch list to see if you come back and post. Best wishes - Dan
Any progress since your last post? I am a 50 year male, was always healthy, active and athletic. About 12 years ago I had a massive pain in my right abdomen, and life has never been the same. Over the course of 12 years, this painful condition right below my right rib cage has literally sucked the life out of me. I sought diagnosis from my PCP, and have been referred to a host of specialists. I have been 'non-diagnosed' as depressed, stressed, having IBS, and psychosomatic. I finally found a doctor with the rarest skill set of all: listening. I had him interlace his fingertips with mine, and locate the painful mass under my right ribcage. He agreed that it was not normal, said he thought it was probably my right kidney, and sent me immediately for an ultrasound. The ultrasound tech did confirm that the mass was my right kidney, and I was shocked. He did images while lying on my back, lying on my left and right sides, and while standing. I have yet to actually consult with them on the results of the ultrasound, but have requested to do so. At this point, they want to treat me with a pain management procedure. My body is sending me messages that it is in distress, and they want to suppress them. I think this is something like putting out a kitchen fire by turning off the smoke detector. A diagnosis of Nephroptosis is supposedly a kidney that moves 5 cm or more between the lying and standing position. I think mine moves more in the order of inches! Apparently the surgical fix for this, called nephropexy, "secures the floating kidney to the retroperitoneum", and is somewhat controversial. Several recent articles I have read have expressed great optimism for a laparoscopic nephropexy, showing a high percentage of symptom resolution, minimal invasiveness, and fast recovery times. The downside is that there does not seem to be many medical centers offering this procedure yet. Good luck! I will add to the watch list to see if you come back and post. Best wishes - Dan
MEDICAL PROFESSIONAL
Hi,
As mentioned from the other post, it is best that you have this checked by your doctor or be referred to a nephrologist for proper diagnosis of nephroptosis. Direct clinical examination or physical examiantion and diagnostic tests like x-ray, cytoscopy or pyelogram may be indicated. Take care and hope to hear from you soon.
As mentioned from the other post, it is best that you have this checked by your doctor or be referred to a nephrologist for proper diagnosis of nephroptosis. Direct clinical examination or physical examiantion and diagnostic tests like x-ray, cytoscopy or pyelogram may be indicated. Take care and hope to hear from you soon.
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