Guest maia Posted July 8, 2013 Report Share Posted July 8, 2013 Maia...your story is incredible. I hope you can get it all sorted out and get your life back or as it should be. I hope for this for you. Keep us up to date with your story. I read your symptom list and ticked off all of the symptoms that we share. Almost identical. I have pain around my gallbladder and have a gallstone. I am waiting to get it scanned. Amazing TCP, and i hope its an answer for you too. Im willing to bet a whole lot of other potsies have the same symptoms too. Can you get your kidneys checked standing before anything is done to your gallbladder? Caviat; im not a doc so im not advising you to do nothing about your gallbladder.. But, the reason i thought i would try to move this mystery lump is because of all the other gi and chest pain problems ive been having lately-and after cardio said it wasnt heart, i thought it was my gallbladder!Good luck to you and keep me posted too? Ill keep posting as i find out more. Quote Link to comment Share on other sites More sharing options...
Guest maia Posted July 8, 2013 Report Share Posted July 8, 2013 http://www.ncbi.nlm.nih.gov/pubmed/11116129 Quote Link to comment Share on other sites More sharing options...
Guest maia Posted July 8, 2013 Report Share Posted July 8, 2013 Outbound sympathetic nerve fibers innervate all organs that are involved in the direct control of peripheral vascular resistance, management of central and peripheral chemo receptors, directly influence cardiovascular contractility, heart rate and rhythm, management of total body salt and water through both renal mechanisms and control of intravascular circulating blood volume through alterations in tone of the splanchnic storage vessels and of course the kidney itselfhttp://www.ncbi.nlm.nih.gov/pmc/articles/PMC3222813/ Quote Link to comment Share on other sites More sharing options...
Guest maia Posted July 8, 2013 Report Share Posted July 8, 2013 Just saw the urologist. It is official. Pots is not Pots. It is Deitl crises caused by a mobile kidney. Can the kidney moving and spitting out more noepi than i can handle be what causes dysautonomia and not a transporter problem? May be, let me talk to the dysautonomia doc. doc also mentioned how odd it is that this diagnosis used to be very common years ago and is now almost unheard of. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted July 9, 2013 Report Share Posted July 9, 2013 Following with interest. Thanks for the updates. I was reading a little more about this and pain seems to be a major symptom as well. Do you have pain when upright? I have a lot of pressure, but not pain. Quote Link to comment Share on other sites More sharing options...
issie Posted July 9, 2013 Report Share Posted July 9, 2013 I talked to my urologist today about you and he said that they should tack up the kidney. Of course, no surgery is without risk. But, he said it could be done. Interestingly, he started talking about nutcracker syndrome (which is a known cause of POTS), he said of the 3 patients that he has with this ---NONE of them have POTS. He said that one of the treatments for nutcracker syndrome is to loosen the kidney and have it drop down some - so that the compression on the renal vein is released. They don't want to move the veins and arteries around because they feed the bowels and could cause issues there too. I have been having problems with lying on my left side - and it causing POTS and tachy. He said that it could very likely be due to my having EDS and things being overly stretchy and compressing on the kidney and/or renal veins and causing this. The absolute last resort is surgery - because of the possible consequences - especially with an EDS person. But, he said that likely that is the problem. The way to know for sure would be an ultrasound while lying on that side. But, since there is little that we could do about it --don't really see the point - just don't lie on that side. LOL!Of course, I do have Chronic Kidney Disease - so have to keep a close watch on the function. But, that is improving with what I'm doing with my diet. So, all is good - come back in 6 months.I LOVEEEEE my kidney doc. Issie Quote Link to comment Share on other sites More sharing options...
Guest maia Posted July 9, 2013 Report Share Posted July 9, 2013 Naomi, nope, no pain that i attributed to the kidney, chest pain yes, upper abd pain, yes, coat hanger pain, yes, etc. I think I listed it all in my symptom list a couple pages back. Ill go back and check at some point and add anything ive missed.Issie, are you referring to specific consequenses or the general risks that go along with surgery? Nothing was mentioned about nutcracker syndrome with me, just that the moving kidney caused the pots which is really not pots but all the symptoms that are called pots, and it will be fixed with putting the kidney back where it belongs. I now understand why pots was explained to me as a syndrome and not a disease. It is a cluster of symptoms only. Also, makes sense about your doc saying not to move the veins and arteries, as the same problems can happen and others with a dropped kidney too. Im sorry youre having problems with yours that cant be fixed, but i certainly hope everyone reading this with pots get their kidneys visualized with some kind of a scan while standing and i hope yours isnt too bothersome. Im just glad this was found out before it caused any kidney damage or worse to my heart. How wonderful you have a kidney doc you love. Quote Link to comment Share on other sites More sharing options...
issie Posted July 9, 2013 Report Share Posted July 9, 2013 Yes, general consequences and risk with surgery. You never know what "could" happen. But, you always hope for the good things to happen. Nutcracker syndrome is a different issue and one that I was sure others would eventually pull up. He said that usually there is a lot of pain with it and also blood in the urine. It is listed as a possible "cause" for dysautonomia. Interesting that the 3 patients he has with it ---DOES NOT have POTS. He said it is very rare.Yes, been dealing with my kidneys for awhile now - didn't know if it was heart, kidneys or both. It's both. But, I'm working on it. Things are improving. My diet has reversed the kidney disease from stage 3 up to stage 2 - almost stage 1. I was at stage 1 and now regressed a little. But, was told that it can vary from day to day. Sooooo . . . things are improving. I'm better then I've been in years.I'm glad you got it figured out and when you have it "fixed" ---hopefully, you will no longer even have POTS and this will all be a bad memory for you. Issie Quote Link to comment Share on other sites More sharing options...
Joann Posted July 10, 2013 Report Share Posted July 10, 2013 Question, you have problems standing. Did you have problems with bending or lifting? Along with the spot below my right rib, I am having terrible pain/pressure below sternum and in my mid back (both in the middle and a line to the left of spine) when it is extremely bad, it goes up my left side of face/head. This is getting worse, until I can no longer even carry a gatorade without pain. Last year this is how my POTS symptoms began. I can tell I am very close to being at my worst.It will get to the point I will no longer be able to even sit or stand. I know it is something in my torso causing this. Could it be the kidney? I had been thinking of other things, like my back, hernia, pheo. I feel like it should be something they should be able to find easy, but the doctors keep shaking there heads. Tomorrow I am going to get my thoracic mri results, I am so hoping it will show something. The nurses have told me they didn't think there was much there but a bulging disc. But maybe that along with my scoliosis is causing it? I just know it is something that compresses something to cause the POTS and all this pain and pressure Quote Link to comment Share on other sites More sharing options...
Guest maia Posted July 14, 2013 Report Share Posted July 14, 2013 Do i have problems standing? Yes! That is and has always been the main problem. I cant breathe when i stand, my heart beats ike crazy,i get pain or a wierd pain lke sensation that goes up my back, shoulders, neck and head (i guess thats hat they call coat hanger pain and up the sides of my head and i get chest pain and i cant tolerate any of it. Bending? no. I have to lean forward or bend. Lifting? cant do.Was your mri done while you were vertical? did they do an ultrasound while vertical? Have they checked the location of your kidneys while vetical?This is my main peeve and has ben since day one when i said they had to check me standing because 'something must have moved' :If the symptoms are when we are vertical, WHY ARE THEY NOT CHECKING US WHEN VERTICAL? !!!!!!! I dont believe it takes 12 years of medical school to gain that common sense. Though perhaps it takes all those years to eliminate common sense. Quote Link to comment Share on other sites More sharing options...
Joann Posted July 14, 2013 Report Share Posted July 14, 2013 I actually asked if I could be partially propped up for the mri and was told no. To do an accurate check of my back i had to lie flat. then she let me a have a little thin pad for the top of my head, which did nothing. I have to wait til Wednesday to see the doctor who ordered the test, I tried seeing his partner and she was the rudest person I EVER met. I won't go into the whole story, but basically won't review tape because I am not her patient and said the radiologists report doesn't indicate anything that would cause this (although it does say I have several bulging discs in the thoracic spine, but not herniated). I cannot bend or carrying anything. I tried sweeping and it brings pain in my upper abdomen and then pressure and sweating and in to my back.I don't think my problem is exactly like yours,, but then who knows some of my symptoms are similar. I don't know of anywhere nearby who will do these tests upright. Quote Link to comment Share on other sites More sharing options...
Guest maia Posted July 14, 2013 Report Share Posted July 14, 2013 Ultrasounds can be easily done upright. I wasnt even asked to lie down until afte the first couple swipes with the wand. I also slipped a couple disks once-couldnt bend or lift either. It did not feel anything like this 'pots'... Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted July 15, 2013 Report Share Posted July 15, 2013 Wow this is so impressive! You are a fighter! Keep up updated pleaseeeee.. Wow!! Quote Link to comment Share on other sites More sharing options...
lifeless Posted July 16, 2013 Report Share Posted July 16, 2013 this story is so amazing--speechless. and WE are not the ones making the big $$$!!!bless you in so so many ways. so many ways. Quote Link to comment Share on other sites More sharing options...
Akgirl Posted July 17, 2013 Report Share Posted July 17, 2013 Okay, so I have bad news for you I am a 31 year old female I also have floating kidneys and pots. And I had the surgery which is called nephropexy. They actually sewed my kidney to my muscle running along my spine. And after one week it flopped loose and they had to redo it and tied it to my bottom rib!!! I had this surgery done about 12 yrs ago and have HORRIBLE pots today!!!! I wish I could tell you it was a Miracle cure. Perhaps for you it will be for you? I will keep my fingers crossed. But all it did for me was take my pain mostly away. It's funny when you describe lifting your kidney, this was exactly what I did!! My floating kidney was confimed with a ivp and a standing ultrasound. I was not diagnosed with pots at that time although I suspect I had it. Just not to the degree that I have it now. My second surgery was awful and I ended up almost bleeding to death and now have permanent nerve damage. The recovery was very very long. So please don't rush into anything!! I promise you my pots is NOT gone I am pretty much housebound and can't stand for more than 2 min without fainting and seizing. I am on as much meds as my nuero can give me and see a PT twice a week. This is all with my kidney put back in its proper place..... So please proceed with caution Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted July 18, 2013 Report Share Posted July 18, 2013 Any updates Maia? Hope you're getting some answers. Quote Link to comment Share on other sites More sharing options...
Akgirl Posted July 19, 2013 Report Share Posted July 19, 2013 Maia, just wanted to let you no if you have any questions on the details of the surgery and recovery etc. I will happily answer anything if it will help!! Quote Link to comment Share on other sites More sharing options...
Guest maia Posted July 19, 2013 Report Share Posted July 19, 2013 Thank you Hanice and Lifeless. Lifeless, i so needed that, thank you. I hope yu can change your forum name to lifefull sometime soon!Akgirl, Im so sorry to hear of your troubles and i am definitely proceeding with caution. Did they kink the artery or nerves when they put it up the second time? If i have any questions, i will definitely ask. Im sure i will after i speak wht the surgeon again. Did they maybe kink the artery or nerve when they put it up the second time?Naomi, no updates yet. waiting... cancelled ivp because the contrast is nephrotoxic and i dont want anything done that can harm my already stressed out kidney. waiting on antoher scan and more appts. will post when i hear anything again. In the mean time ill post more links later about this later. the more i hunt around, the more i read about things that are linked to this but all the modern 'research' seems to want to investigate the symptoms and what they do to the body and what pills work for what symptoms instead of looking at and fixing the cause.more later. Hang in there everyone! Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted July 19, 2013 Report Share Posted July 19, 2013 Ok, wasn't sure where you were at with this. Will look for future updates! Quote Link to comment Share on other sites More sharing options...
Akgirl Posted July 19, 2013 Report Share Posted July 19, 2013 So, as far as I know they didn't kink anything. The second time they just re cut me open and tied it to my bottom right rib and sewed in to the muscle that runs along your spine. I think I would know it they kinked anything because before I got the surgery I could go HOURS without peeing and had frequent kidney infections and constant flank pain. Quote Link to comment Share on other sites More sharing options...
Guest maia Posted July 19, 2013 Report Share Posted July 19, 2013 So, as far as I know they didn't kink anything. The second time they just re cut me open and tied it to my bottom right rib and sewed in to the muscle that runs along your spine. I think I would know it they kinked anything because before I got the surgery I could go HOURS without peeing and had frequent kidney infections and constant flank pain.I hope they didnt. I was asking because the ureter and veins and arteries are different structures and its the veins and arteries being compromied which can cause the pots from what was explained to me. Ill let you know if i hear anything different. Quote Link to comment Share on other sites More sharing options...
Guest maia Posted July 19, 2013 Report Share Posted July 19, 2013 The overlooked anomalies on all supine imaging are demonstrable on upright...that may affect both kidneys via sympathetic neuropathy! www.biomedsearch.com/nih/Features-complications-nephroptosis-causing-loin/11938398.htmlOrthostatic hypertension has been described in patients with nephroptosis8 9 and in patients with excessive venous pooling and reduction in cardiac output or with initial orthostatic hypotension.7 10http://hyper.ahajournals.org/content/28/1/42.fullhttp://www.researchgate.net/publication/45983427_NEPHROPTOSIS_ITS_CAUSATION_SYMPTOMS_AND_RADICAL_CUREIf anyone wants to buy this one, a repost would be great: http://radiology.rsna.org/content/18/1/56.extractvery interesting, with surgical explanations and drawings: http://books.google.com/books?id=-BY1AQAAMAAJ&printsec=frontcover&source=gbs_ge_summary_r&cad=0#v=onepage&q=silver&f=false Quote Link to comment Share on other sites More sharing options...
Guest maia Posted July 24, 2013 Report Share Posted July 24, 2013 According to this, norepinepherine does not rise in dysaytonomics.http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/8532Still waiting. Apparently no one in the country is able to get the stuff needed to do my standing scan?! Um, really.Also had 2 ct scans done with visualization of kidney in 2 locations. Hospital will only document one. Quote Link to comment Share on other sites More sharing options...
Akgirl Posted July 24, 2013 Report Share Posted July 24, 2013 Keep me posted!! Super interesting!! Quote Link to comment Share on other sites More sharing options...
kim5204 Posted July 25, 2013 Report Share Posted July 25, 2013 I am off to london Ontario for somre testing going to speak with specialist. mention floating kidney see what he thinks. I do have many problems besides the floating kidney. let me know what you here too. Quote Link to comment Share on other sites More sharing options...
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