Can you be more specific on *bladder problems*? As well, what type of pituitary tumor? One type will make you drink and pee, drink and pee, drink and pee. It effects ADH or vasopressin and can be treated with DDAVP. Sometimes after surgery, one will get what is called diabetes insipidus and need the DDAVP. It can be temporary and rarely permanent.
Sometimes a pit tumor will press on more than one area of the pituitary, so the pituitary will test for say, prolactin, but your symptoms will cause more widespread issues.
Make sure your doctor is a neuro-endocrinologist and get copies of everything.
I'd love to answer your questions, i.e., what type of tumor,etc.. I don't even know where to begin. All I (finally) know is I have an 8 mm pit tumor. I've been seeing a neuro-endo since last Oct. (He says I didn't have a pit tumor) He keeps testing me and testing me.. 24 hr urine, midnight saliva, blood tests. I'm getting so sick of the word "normal". I had a neurosurgeon last October that said I had a pit tumor, he ordered an MRI and WANTED to do the surgery right away, even ordered an IPSS test to see which side it was on. His biggest mistake he sent me to this endo which is a neuo-endo. (I've got every known symptom there is and then some, big belly, gained about 50 lbs, buffalo hump, peripheral vision problems, bowels, bladder, urethral discharge, cysts, blisters on my face, fatigue, high blood sugar, atrial fib, shingles and on and on) As soon as my endo found out about the IPSS and the scheduled surgery, he got with the neurosurgeon, and the neurosurgeon that did the IPSS. Then the neurosurgeons nurse called me and said "I DIDN'T have a pit tumor" and I didn't need the follow up for the test. I was devastated. I made an appt. with the neurosurgeon that did the test, since the nurse wouldn't let me see mine for the follow up results, but he didn't have the results only stated that he found the tumor. So, out of frustration and months of worrying, I just made an appt. with another neurosurgeon and he said it was an 8 mm pit tumor and I don't know why I didn't, but I think I should have used a silver bullet on myself during that visit because I heard him say "Asymtomatic"(he caught me off guard)... he didn't look at the sheet of symptoms I attached (I guess). I also have short term memory problems, I've blacked out before.. oh and the best of all, I have a mustache, hairs on my face, lost my eyebrows. I'm just about ready to give up. I can't figure out why this endo is cutting me off at every turn, because this new neurosurgeon did blood tests and was suppose to call me within a few days.. that was a month ago!! The only thing I can figure is because he was sending for this endo's records, the endo once again has hung me out to dry!!! Right now I'm wondering whether to go back to the endo or call the nurse of the neurosurgeon or what?? I'm so sick and tired of this whole mess. The reason for the bladder question is because I have bled from my bladder before and they just found blood in my kidneys, but after a cystoscopy and taking a couple lesions off my bladder it ended up hurting so bad afterward and I didn't have an infection. The urologist did a urodynamics test and found my bladder wasn't contracting enough - she put over 1000 cc's of liquid in and I didn't get the urger although when coughing or sneezing I wasn't leaking or anything. I just got done having the I-stem which is where they put wires down in the lower back to the bladder muscles and hook it up to a stimulator for 3 days (that didn't work) just couldn't go hardly. The urologist just got done dilating my urethra and that is doing great, although I've had the discharge more prevalent. I go back to him in 3 weeks so I'll wait and see, maybe this will get rid of it once and for all. I also have sinus problems and I can't smell or taste. I was taking 3 stool softeners for my bowels, 3 phillips of magnesia and 2 benefiber per day and sometimes even a dulcolax suppository just to get my bowels to move. I had a colonoscopy in Feb and my bowels moved great after that for 3 months until I was spraying some bug spray on my schflera (plant) and I happened to inhale some of it - my throat swelled up and my spinchter muscle hurt and then my bowels weren't moving like they had been. I have weird symptoms with this thing. At one point the endo mentioned cyclic cushings and he was talking about sugar diabetes. When I was in the hospital for my atrial fib, they tested me and said I didn't have sugar diabetes. So there is some of my story... I know I'm not making much sense but I am so digusted.. I don't know why the endo insisted that I didn't have a pit tumor when I have had 3 neurosurgeons and a radiologist state otherwise. They won't do anything without an endo's blessing... go figure!! Did I mention I'm on xanax for my nerves. It's about the only thing that helps me right now, I only take them as needed, though. I know I'm all over the place with this.. I hope you can make some sense of it :-)) Thanks for the comeback!!!
Oh. You have Cushing's disease. And you have met an endummy! I have met so many in my life... I had one try to cancel my surgery at last minute too - and so you are not alone - it has happened to me, and actually several others. It seems that even though you have all sorts of issues, they somehow can justify it all and think all is somehow all well!
So, now they are playing with the dang incidentaloma thing - find an endo that knows what cushing's is vs his er, well, anything! and move on - you have a sad story and sadly, the jerk will go on hurting other patients, but please move on.
But yes, the endo has to give the surgical orders.
Thanks.. it really helps to vent. I'm thinking about making another appt. with him and really making my point that I am suffering and it is not fair AND why is it that he doesn't want to admit that I HAVE an 8 mm pit tumor, and why is he trying to convince others that I don't??? At one point he said "we'll find it"... find WHAT?? He did admit he can't read MRI's (go figure) I want him to admit to me that I have a tumor and that microadenomas cause more problems than is in his little book... I just started the atrial fib in January.. ended up in the hospital twice now with it. Thanks for SAYING I have Cushings... I just needed to hear it. Up until now, I've been letting them do all the talking.
I should insist on the surgery, then tell them to do an autopsy on the tumor and THEN treat whatever was causing it... at least I'd be rid of the source of ALL my problems!!! I'm so tired of treating the symptoms.
Did you have surgery and was it Cushings?? How many docs did it take to finally tell you what was wrong?? I did have one ray of sunshine and that was when I went to the ear, nose and throat doc... he just happened to be the one that assists the neurosurgeon that wanted to do the surgery in the first place BEFORE mr endo stepped in. He told me if my peripheral vision gets any worse to call the neurosurgeon and ask for him to review my condition. The darn thing is that my peripheral condition improved after I was so sick and I only have it occassionally now, if nothing else I may wait for it to show up more and do just that.
I have been working on this straight out for 13 months now (right after I got my insurance) Before that I just suffered. I think at one point I had what is called a thyroid storm.. I had a 105 degree temp, chills, sweats, when I got up at 4 in the morning to pee, I thought I peed myself but there was blood all down my leg and when I looked there was about 1/2 cup on the floor from my bladder... then the horrible bladder spasms started and the worst infection. I was delirious I guess... I knew what I was saying but my husband and daughter couldn't understand a word I was saying. I couldn't lift my legs to get into the tub (they wanted me to get in a tub of cold water to bring my temp down) I had to literally lift them in... then I was shaking so bad I couldn't put my hand on the sink.. it was scary. Because I didn't have insurance at the time, our old family doc saw me, put me on Levaquin and said I should be in the hospital.. I came out of that then I ended up with such horrible pains all down my right side, it was the worst I ever felt, I walked the floor.. I couldn't sit or lay down.. then I broke out with the shingles all down my right side, then on my face, then on my face again, then boils on my groin. It was after this that my peripheral vision cleared up, before this I couldn't even walk through a doorway hardly. I don't know if it was possible that some of the tumor went down my throat.. this is the only explanation I have for this because after this some of my symptoms improved. It was also after this that I would black out, though.
My husband found me on the floor after our German Shepherd went to him and he thought he wanted out, he even opened the door of his gate to get to my husband, but then he wouldn't let my husband pass the bedroom door, that is where I was on the floor and just missed hitting my head on the treadmill.. German Shepherds are the best!!
After this my hair stopped falling out as much and the mustache wasn't as thick, but alas all this is coming back... go figure!! Thanks for letting me bend your ear... I'm just so frustrated. I'm praying about what to do and just, more or less waiting to figure my next move. It was nice to have a week or so off.. not dealing with it.. just waiting and praying and of course seeing my urologist. I still have the urethra discharge and pain in my right side, but I see him in a couple weeks so if it doesn't get any worse, I'll just wait. I'm trying to catch up on all of the co-pays and that doesn't help ones mental attitude.. :-)
Thanks again for listening. Sorry for the lengthy response. Linda
The process of getting diagnosed is very frustrating - especially if one is outside the box, even a bit.
If the tumor is 8mm, it should be contained within the sella turcica, and is not going down your throat, but the hormones make things go very wacky. I know my blood pressure was all over. That can cause some issues with blacking out etc.
I have told my husband to sharpie-pen his cell phone number on my er, leg, with a note to call when they figure out what is wrong since they cannot figure it out when alive... so you are not alone in that. I would get a tattoo but he may change numbers or I may get an infection from the tattoo.
Most endos cannot read films. Most neuros cannot either. They just don't do it. Don't worry about it - they read the report. Go see a neuro-optho and get a good exam.
They won't do surgery unless you have the tests - but it sometimes feels like they wait until you are at the very end. You can see how I looked in my pics.
Yeah, the 'er' leg sounds like something we may have to do :-)) but, yeah if it's anything like me they wouldn't know how or why I got gangerene lol I know what we have is not a laughing matter, but we can't cry all the time.
What have they diagnosed you with?? What specialitsts have you seen?? What tests have you had done?? (Nosey aren't I)
Yes, I do agree about the neuro-optho, but want to make sure the peripheral is creating a problem at the time.. I need positive results to slay the dragon(s).. thanks for the update.
I'm new at this posting game, how do I find your pics??
To see anyone's pics, click on the blue name and that will take you to their profile, and if they have pics, you can click on them, they enlarge and you can click through them. Don't send, post. I am going to be in and out as I am helping my aunt since my uncle in is in the hospital for the long haul and I am going to a pituitary convention. How fun is that!
I have a few things that I was diagnosed with in my profile... I am panhypopit and Adrenal insufficient now, with a neuro muscular thing.
Yeah those old positive tests... they can be elusive.
Hey again, I just wanted to say that since the urethral dilation, I don't have any, and I mean any bladder infections or pain in that area or the urethra. On my checkup, the nurse had me pee in this special commode that measures the amount of urine and then she put the ultrsound machine on me and my bladder was COMPLETELY empty. This is the most wonderful thing because when I had the urodynamics done, my bladder wasn't emptying and at that time it felt like I had to go all the time and I would get pains in my urethra, bladder infections (probably because my bladder wasn't emptying all the way).
I just wanted to say that if you are having bladder problems, try the urethral dilation because that worked miracles for me even with the cushings.
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