kim5204 Posted July 25, 2013 Report Share Posted July 25, 2013 july 31st is the date for seeing neuromuscular doctor, autonomic specialts. Quote Link to comment Share on other sites More sharing options...
Guest maia Posted August 6, 2013 Report Share Posted August 6, 2013 I caled the doc yesterdy and said if they didnt figure something else out soon i was going to a different doc in a different hospital because i was not waiting anymore for this. Got a call a couple of hours later to be there this morning at 9am for renal scans. Ha! So, I just had 2 MAG3 scans with an additional dynamic scan after the standing one was stopped. one laying down, one standing up. laying down shows right kidney slightly lower than left but seemingly-to my untrained eye in a somewhat normal position compared to the other. standing up right kidney dropped. this is all on video. i couldnt finish the 40 minutes of the first scan, only made it to about 30 because i was freezing and shaking and my bladder was spasming. I couldnt do more than about 10 minutes on the standing but they got al the images they needed minus a complete scan for functionality, measured the kidney changes and then did a dynamic where i lifted my kidney and then let it drop. I Lifted it right back to its normal position and it fell right back down again. I also got a copy of the last 2 ct scans which i was told was going to be updated-after several calls to management- to reflect the two kidney locations on each separate scan. Again they did not document a change in location and instead documented that the kidney was in the same location on both scans. complete bull again. Of course ill be raising **** with more people about this because now i know why i have had to wait another month for this scan. If the ct techs and the original ultrasound techs had actually documented what was seen by not only me but several other people, i wouldnt have had to wait another month and go through yet more scans, but at least its done now and hopefully will be documented as it was actually done this time. I also brought a witness with me and informed them that i was going to do so because of the inaccurate reports on the last two scans and told them id be raising holy bleep if it was documented inaccurately again. they were all very curious and interested and commented on how cool it was to get to see this, so we will see. it was interesting though and they were all very nice. when i asked them if they wanted to do part of the test with me lifting up and dropping the kidney some said i shouldnt be able to do that and others just gave me funny looks and said ok why not. I think they were all surprised when it actually did what i said it would-and this time its all documented on a video under a gamma camera! ha! next chapter please! ... Hang in there everyone. Hugs! Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted August 6, 2013 Report Share Posted August 6, 2013 I continue to be astounded and amazed by your story. And I love that you're pro-active because Doctors usually aren't! Is there help available once the Doctor sees this documented on the scans? Quote Link to comment Share on other sites More sharing options...
Guest maia Posted August 7, 2013 Report Share Posted August 7, 2013 Yes, there is help. The surgeon knew what was happening but he needed someone to actually do a scan and document it accurately before he could do anything. So its back to him but first i need to see a different cardiologist and get my sugars checked too. Ive had wierd circulation and chest things happening the last couple months that are different but they now want to do the wait and see thing. I also had a really low sugar lately and had them over 250 when i was taking fludro. no one would check that either. Im not comfortable having surgery until these are both checked by tests and not opinions.I got the scan report also. It states which kidney is falling, the amount the kidney is falling, that I came with a diagnosis of nephroptosis, and that the most dramatic part of the scan is when the kidney is manually moved by the patient. Im surprised by the small amount it is falling but i was only standing for a short time and i think it drops more when i walk. then again, maybe not and this amount is really reaking all this havoc. The report also states that i recieved a saline infusion of a specific amount per my body weight and was given it 15 minutes prior to the scan and it continued for 1 hour. Really? The techs commented that i had not hydrated (I was not told to) so they brought me 2 cups of water. I recieved NO IV fluids of any sort. Whatever, Ill take the iv thing up with my doc later when i ask why I didnt get this considering i recieved not one but two injections of this radioactive stuff. Im just glad someone finally documented one of these tests accurately. .. and i hope i dont wake up glowing.Added: So, IMO, If you want your kidneys checked-and considering this was so common in the past and caused everything from pots like symptoms to nervous breakdowns because of all the various symptoms, i hope you all do-forget the ultrasounds and ct's -getting anything documented accurately with these is hopeless- and go to right a nephrologist or urologist and demand-politely and assertively and in an informed way of course- to have a supine and standing renal scan done. Quote Link to comment Share on other sites More sharing options...
Akgirl Posted August 7, 2013 Report Share Posted August 7, 2013 Bummer that ur having such a hard time getting disgnosed!! I got my nephroprotosis diagnosed very easlily with little hassle or fighting. They used a ivp and a tilt table. Also a ultra sound while on tilt table. The uroligist also used a devise that looked alot like a toilet plunger to munipulate my kidney around my body cavity. Mine dropped all the way to my pelvic floor. The reason mine flops is because I have no interior body fat. When I had the surgery the doctor was AMAZED and actually wrote about it in a journal somewhere I guess normally all your major organs are held in by a thick layer of brown fat (wich is developed in the womb) I do not have any. Apperantly my body cavity is totally pink and when he opened me up and was able to reach in and pick my kidney up with his hand. So that's another thing I am curios wether you will have or not? You can't tell with scans ect. If you have interior fat. Quote Link to comment Share on other sites More sharing options...
Guest maia Posted August 7, 2013 Report Share Posted August 7, 2013 Glad to hear yours was easily diagnosed! I think the key is definitely having a kindney doc doing it. It actually was diagnosed quite a while ago, but no one would document the darned scans! I tried to get the neurologist to do an ultrasound on the tilt but that was a no go, oh well. I was wondering about the fat thing too while reading about the surgeries. I had no idea you could have absolutely none. I really wouldnt doubt if im all pink inside too. The only time i have ever had any fat on me anywhere is when i was pregnant and that all disappeared real quick. I found an old surgeons journal where they described a nephrocoloptosis and found that very interesting. Apparently there is a renal ligament that also connects somewhat to your colon and in this type of surgery the ligament is attached to your back muscle just below the kidney and by doing this the kidney is fixed in place without stiching into it directly. I read a few cases of kidneys ripping off after a nephroplexy and considering I am so skinny and i can tell just by feeling that i have no fat where the kidney is supposed to go or be sewn to, i thought that sounded like a good idea. Im amazed too! Did your doc ever say why no brown fat or what caused it not to develop? Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted August 7, 2013 Report Share Posted August 7, 2013 Maia - yey for you on finally have proper documentation. The IV thing is annoying and I can't tell you how much misinformation I discovered while gathering my medical records. It's unbelievable and I think happens all the time. I just read a few posts back where AKgirl said having the surgery did not fix her POTS. Is your Doctor pretty sure the floating kidney and POTS are related? Well wait... you said lifting your kidney stopped the POTS symptoms, right? I do wonder why it didn't help her though and sounds like she had a terrible time with the surgery. I'm sure you would weigh everything carefully, but it is a bit concerning. Quote Link to comment Share on other sites More sharing options...
Akgirl Posted August 7, 2013 Report Share Posted August 7, 2013 Maia, the doctor was totally amazed about the lack of brown fat and said he figured that you would probably see it a lot in 3rd world countries but had never seen it or heard of it. My mom had nine healthy pregnancies and for what ever reason I have always had health issues? Her pregnancy with me was no different than any of the others? As far as the kidney ripping off, that's exactly what happened to me!! I actually felt my kidney rip lose after a week and it was the grossest feeling, not to meantion depressing because the surgery is pretty major. I am now so filled with scar tissue inside that with my last pregnancy I had big lumps all over my stomach!! They also had to cut and scrape out mass amounts of scarring from the first surgery to even reach my kidney the second time. It was horrible and i ended up spontaneously hemoraging and so the surgeon clamped into a bundle of nerves so I also got nerve damage as well!!! Blah blah blah honestly I could keep going on about all the bad things about nephroppexy. At the time I was not diagnosed with pots, (although i suspect i had it) in fact the weird part was I was not even close to how sick I am today with my kidney in its proper place!! So who knows! Quote Link to comment Share on other sites More sharing options...
issie Posted August 8, 2013 Report Share Posted August 8, 2013 Surgery alone can cause a person to express more POTS symptoms. I've had 8 abdominal surgeries and mine were awful too. I also had massive adhesions and complications regarding my blood pressure. That's one reason why my nephrologist said he would not want to do surgery on me ---only if it was absolutely necessary. But, stress can make everything worse. It's hard to know how things will go. We are already so unpredictable. I hope the decision becomes clear to you and whatever you decide works to your best interest. Issie Quote Link to comment Share on other sites More sharing options...
alicios Posted August 9, 2013 Report Share Posted August 9, 2013 Hi MaiaI´m new to this forum and I found your post on POTS/floating on google. I found out I had a floating kidney a few years age and I was sure that it was the reason for my symptoms that were later diagnosed as POTS. My urologist did not think that a floating kidney could cause the symptoms I had which is why I continued on searching for another diagnosis and I found POTS. I have done so much research on my own to find a link between my floating kidney and POTS. Both conditions started at the same time after my first pregnancy and it just seemed so related. I still think that there is a chance even more so after reading about your situation. The one thing I don´t understand is why a floating kidney can cause so many differet autonomic symptoms. The tachycardia I get but what about the exercice intolerence, the temp regulation problems, the cognitive impairment, the blood pooling etc. Did your doctor explain why a floating kidney can cause all of those symptoms? How far did your kidney drop? Mine only drops about 3 cm which isn´t even enough for an official diagnosis. I have some pain related to my kidney and I´ve experienced episodes where I sit for at long time and I experince more and more pain followed by a tachycardia episode, dizzynes, nausea etc. I was thinking this could be do to the blood supply being cut off from the kidney. Do you have those kinds of episodes?AKgirl: you wrote in a post that you were able to move your kidney back in it´s place when standing. Did it relieve your POTS symptoms when you did this like iot does for Maia?Sorry for the spelling. I´m from Denmark so english is not my first language:)Hope to hear from you guys. Can´t wait to here more about your situation Maia.Alice Quote Link to comment Share on other sites More sharing options...
corina Posted August 9, 2013 Report Share Posted August 9, 2013 Hi Alice, welcome to the forum! I'm from Europe too (the Netherlands) and think your English is excellent! Hope you will find the answers you need here Quote Link to comment Share on other sites More sharing options...
Akgirl Posted August 9, 2013 Report Share Posted August 9, 2013 Hi Alice welcome, I wasn't able to put mine in the proper place standing like Maia. I needed surgery to do that. Before my surgery My kidney would go back in its proper place when I was laying on my back. Every time i would stand my right kidney would not only fall but it would also twist and kink. Wich caused everything to start to back up and therefor become toxic. I had chronic kidney infection and a lot of flank pain on the front. The funny part is, my left kidney also falls but it does not kink so therefore is not dangerous and does not pain me so I never received nephropexy on this side. I don't no how many millimeters my kidney actually fell? I remember the surgeon saying It was able to go all the way to my pelvic floor because I had no fat to stop it? I don't know if it really did this or he was just theorizing?? As far as pots and tachycardia I was not diagnosed at the time. I am 31 now and that was about 12 years ago. It took me literally 5 yrs to recover from the surgeries. I was in chronic pain from nerve damage and loooots of other complications. I was not diagnosed with pots until this year. I have always occasionally passed out but nothing compared to my life now! So perhaps I had pots back then And now it's a full blown case? Who knows, but please consider the risk before getting the surgery. I know not everyone's the same and hopefully others have had better luck with it than me but it has NOT cured my dysautonomia and pots. Quote Link to comment Share on other sites More sharing options...
Guest maia Posted August 10, 2013 Report Share Posted August 10, 2013 Hi Alicios and welcome to the forum. yes, all of the docs shed some insight as to why this happens and how it is caused by the kidney. each one had a little piece of the puzzle so to speak. The last one who added to it was a vacular cardiologist who said basically your body thinks you are in shock due to bleeding out and likened it to the bombing victoms at the marathon who were being wheeled down the street without their limbs while conscious and not bleeding out. Others have explained how the norepi etc released change how the heart beats and vascular function and also that when the veins and arteries are stretched it affects the nerves and the nerves signal all sorts of things to happen when they are in distress due to falling or kinking or being blocked off. I dont have pain from the kidney unless it is being pressed on or moved around, but the urologist said the seemingly non GI nausea is part of a deitl crisis caused by the kidney. Ive also read bits about this changing glucose matabolism but cant find that info right now. I may have posted it in other links in this thread and i also just found thisand the saga continues. I need to have another scan... again... Apparently when the techs said i could lean over the machine-because i cant stand for 40 minutes, duh... it affected the results and although my kidney was documented as definitely mobile and abnormally mobile, they didnt get to see it actually fall when i stood up-because i was leaning over the machine. brilliant. so what they can officially see is that i can lift my kidney and it immediately drops 7 centimeters. but they are not sure that it actually drops and only that i can lift it and make it drop. Um, ok. so answer this, if i can lift it and it drops 7 centimeters, how is that possible if it hasnt already dropped that 7 centimeters?! ya think they could have told me that while i was standing there loaded with radioactive tracer so i could have stood up straight right then instead of having to go through this yet again?! Im seriously getting ready to blow a gasket!third try! mods, my posts are getting cut off when i try to post links. her it is again without the linkedit: for some reason i cant post links. m posts get cut off at the link. here is the one i tried to post in this about low dose dopamine being used for renal/cardiac issues. interesting because my dopamine is non detectable lying down and elevated when standing. Quote Link to comment Share on other sites More sharing options...
Guest maia Posted August 10, 2013 Report Share Posted August 10, 2013 and here is the link http://books.google.com/books?id=KUerLtdvPD0C&pg=PA18&lpg=PA18&dq=kidney+ptosis%2Bvascular+shock&source=bl&ots=xrAKq8VWVD&sig=fzxkXqcbK8S16Oc7OnygoCRY5Ik&hl=en&sa=X&ei=kFIGUq-LGur4yQHwn4Ew&ved=0CEkQ6AEwBTgK#v=onepage&q&f=falseok, i think i got it, I need to use the little link function in the editor an not paste it directly. sorry, didnt know that changed. Quote Link to comment Share on other sites More sharing options...
Guest maia Posted August 13, 2013 Report Share Posted August 13, 2013 Ultrasound done again today. Im all marked up in purple ink. Kidney moves 5-7 centimeters from lying down to standing. Flip me over on my stomach, tilt my head down a little, kidney moves 8 centimeters from lying to standing. They never did the other side, not sure why as it was on the orders and they did get bladder before and after voiding, but not the ureters either. Oh well, surgeon wants another test to check those anyway and now at least there is no doubt and i wont have to deal with anyone else telling me that it either doesnt move, or doesnt drop, or only that i can lift it, etc. Doc who came in during the scan to measure the movement also commented that supine kidney looks like it was in the same position as scan done 4 years ago. Yup that makes sense, this started 4 years ago. But breathing problems are new though, right, he asked? No. Breathing problems are not new that started at the same time too. Hmmm, he said. Ultrasound tech wanted to know how this worked and doc told her it has to do with the hormone changes from supine to standing. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted August 14, 2013 Report Share Posted August 14, 2013 Ultrasound tech wanted to know how this worked and doc told her it has to do with the hormone changes from supine to standing. Sounds like you're making progress. You may have said already, but did they do supine and standing blood work? If yes, what did they find? Curious which hormones the Dr. is talking about. Quote Link to comment Share on other sites More sharing options...
Guest maia Posted August 14, 2013 Report Share Posted August 14, 2013 Yes, supine, standing, then holding up kidney till body felt like it was calming down. epi, norepi and dopamine. all normal laying down, abnormally high standing, and decreasing towards normal while holding up kidney. renin, aldosterone, and angiotensin not done yet but will be. Quote Link to comment Share on other sites More sharing options...
issie Posted August 14, 2013 Report Share Posted August 14, 2013 Yes, supine, standing, then holding up kidney till body felt like it was calming down. epi, norepi and dopamine. all normal laying down, abnormally high standing, and decreasing towards normal while holding up kidney. renin, aldosterone, and angiotensin not done yet but will be. That's just wild. . . .I sure hope you found your answer and they can do something about it. Issie Quote Link to comment Share on other sites More sharing options...
Guest maia Posted August 14, 2013 Report Share Posted August 14, 2013 Yup. Same thing with the results on the tilt tables. I sure hope so too. its taken almost 2 months for this to be confirmed and visualized again after that first radiologist decided to write that bogus report-Which i just recieved the reponse from the patient advocates that i filed a complaint with. results of complaint investigation-everything was indeed normal, we are sorry your doctor misinformed you based on your interpretation of the ultrasound. Really?! wow. Quote Link to comment Share on other sites More sharing options...
Guest maia Posted August 24, 2013 Report Share Posted August 24, 2013 The saga continues. I had to go to another state to actually get a test done where both kidneys were visualized standing and laying down. Apparently an IVP is NOT the gold standard of tests for kidney position. At least not if BOTH kidneys are dropping. Yup, both. No final report yet, but thats the preliminary, and I saw the images and had them explained to me... After i lay panting on the floor for about 5 minutes, after I yelled loud enough for them to hear me in the other room and stop saying, 'one more minute' to end the test and after they let me out and crumple to the floor before i died standing there. ug. Apparently I was quite loud too. Everyone in the waiting room looked very concerned when I walked back there after the scans and one woman asked if i wanted her t get me any water. bless her. What an awful day, but all the techs were really wonderful about it all and i would definitely recommend them. I saw the pics and i was shown the kidneys laying down and standing and theyre not pretty. My poor kidneys! With an MRI there are reference points. Other organs, bones, etc. With the nuclear scans, there are only highlighted kidneys. No reference points. I spent a little time on google and in addition to the womans blog that i posted a link to about her nephroplexy operation, I found a couple other people this has happened bilaterally to. Both in tall thin women, and both had pots like symptoms because of it. So I guess the last ultrasound folks are off the hook for not checking the other kidney like it was ordered. No need now. I have the disk too, but oh i cant wait to hear what the docs are going to say about this now, and what this report will say! Quote Link to comment Share on other sites More sharing options...
Science girl Posted August 25, 2013 Report Share Posted August 25, 2013 This is an amazing story. I am only half way through the posts so will keep reading but I now need to lye down. It also conincides with some interesting information I have been learning. I also have back, chest, diaphragm and shoulder pain with shortness of breath. I found this coincided with my period. Ie it got heaps worse during my period. We thought it may be endometriosis on my diaphragm but the MRI showed nothing. Funny thing is progesterone helps heaps. It turns out the progesterone increases the renin-aldosterone system causing more vasoconstriction and more salt and water retention in the kidneys. Therefore progesterone helps with the thoracic hypovelemia and blood pooling issues helping POTS symptoms. Your story is one that gives me a lot of hope that there are answers out there. I know if I agrevate this area of my body I will first flush then the POTS flares making me think there is something physically wrong In this area. I get very bad shoulder pain that I think is referred from my diaphragm or mid section. I cannot lye on them or I get out of breath and then can only lye on my back which ends up really sore like kidney pain. The progesterone helps me to be able to spend some time on my side relieving my back a little.I also have another weird thing that a dropped kidney could explain. I have found that Celebrex (COX 2 inhibitor) seems to help my tachycardia but I still get all the chest etc pain and sob. I believe the Celebrex increases vaso return (it is why it dangerous for a normal person because it can cause a heart attack with this increase in returned blood to the heart -good for me tho!) and thus decreases tachycardia. But the pain could still be from a misplaced kidney?Thanks again for all the postsKaren (Science girl). Quote Link to comment Share on other sites More sharing options...
Guest maia Posted August 25, 2013 Report Share Posted August 25, 2013 Wow, great info Karen! I just looked up the hormone cycle and it looks like progesterone rises after ovulation and tanks when we start bleeding. Makes perfect sense as to why we tend to feel worse then if progesterone increases the renin aldosterone angiotensin cycle! Wow!Im very glad this has given you some hope, and Im glad you have found some things that help you too. You already have a supine MRI, can you get a standing one for comparison? Quote Link to comment Share on other sites More sharing options...
issie Posted August 25, 2013 Report Share Posted August 25, 2013 Progesterone always made me feel horrible. I couldn't use it either before or after a hysterectomy at a young age. However, it is supposed to help with estrogen dominance and that is thought to go along with endometrosis. I had endo too before my hysterectomy. Issie Quote Link to comment Share on other sites More sharing options...
Science girl Posted August 25, 2013 Report Share Posted August 25, 2013 Getting a standing MRI sounds like a good idea. I'm not sure if the hospital I went to does that but the gynecologist has been really helpful and wants to get to the bottom of the problem. He has already sent me to physiotherapist specialist to rule out my spine or any problems with my hips and shoulders. I go back to see him in October. I don't have any one specialist doctor looking after me or overseeing my case. This gynecologist is the only one who seems to want to help. Here is a paper about the normal menstruation cycle and its effect on the cardiovascular systemhttp://jcem.endojournals.org/content/87/4/1569.full.pdfAnd this one explains why we get short of breath and hyperventilation.http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3129924/For those who don't like technical medical writing basically...In the first week of your cycle (period) your baroreflex is decreased ie it takes only a small change in pressure to cause your heart to beat faster. (For those with mast cell issues week two can be a drag with increasing estrogen activating mast cells). Week three is the luteal phase with high progesterone, increased baroreflex lowering heart rate, renin increases causing vaso constriction and more venous return and aldosterone increases helping to not lose fluid and salt through the kidney. Week four is premenstrual as all the hormones begin to drop. As for the breathing, POTS patients have sensitive CO2 receptors in our arms and legs but they are less sensitive in our chest due to thoracic hypovelemia (blood pooling in legs). So your bp and heart are going up but you are still hypovelemic in your heart, lungs and head so your baroreceptors tell your body to release more noradrenaline and the heart rate and bp keep going up but this doesn't help to the hypovolemia. The baroreflex then causes desensitization of the CO2 receptors, our CO2level drops and we hyperventilate.Hope this helps someone. I might start a new threat asking if progesterone has helped anyone else.Karen (Sciene girl) Quote Link to comment Share on other sites More sharing options...
Science girl Posted August 25, 2013 Report Share Posted August 25, 2013 That's interesting issie. It seems for ever thing helpful someelse reacts to it! Such a weird disorder! Quote Link to comment Share on other sites More sharing options...
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