icesktr189 Posted July 18, 2012 Report Share Posted July 18, 2012 Last year my old neuro had me do MRI. Well Dr. Goodman wanted to see it so I picked up all my records and read through them.Guess my old neuro forgot to mention to me that i have a 8mm pineal cysts. Normal if they are under 5mm with no symptoms is not a big deal, but anything over thatwithsymptoms should be checked on. They can cause so many problems by pushing on your gland like dizziness, vertigo,memory probelms, migraines,ptosis, adrenaline is ect. Which I all have...I dont want to be dramatic, but when I am coming into him complaining of all these symptoms and hefind a fricken cyst on my pineal gland, i would think he would say something. I of course googled, and found a 17yearold girl who had a cyst smaller than mine who also had POTS. She had hers removed and her POTS went away! This MRI was done over a year ago, so i dont know if it has grown or not. Quote Link to comment Share on other sites More sharing options...
Zap Posted July 18, 2012 Report Share Posted July 18, 2012 YIKES - talk about negligent. This is why I review all of my test results myself - I don't really have much faith in most doctors, plus legit mistakes can happen too. I was reviewing some recent bloodwork, when I found that three of the tests were not normal, but I was only informed of one of them. Go figure. I thought that an uncertain Lyme test would provoke questions. Raised homocysteine certainly should be of note too, even if it is only moderately raised.Multiple doctors have looked at my abdominal CT and brain/c-spine MRIs, thankfully, but now I kinda want to go actually view all the images myself... Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted July 18, 2012 Author Report Share Posted July 18, 2012 The funny part is i didnt even look at the image,he wrote it down! lol Those things can be dangerous if they keep growing. ugh i just an so annoyed because i have severe balance problems, vertigo and my sleep pattens are crazy. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted July 18, 2012 Report Share Posted July 18, 2012 Im not surprised since most cysts are benign but probably should have at least considered the possibility. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted July 18, 2012 Report Share Posted July 18, 2012 Doctors are generally conservative and dont adopt possibilities that are questionable or unresolved - Lyme is a good example. Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted July 18, 2012 Author Report Share Posted July 18, 2012 Its mainly a problem because the cyst pushes on the gland, creating an imalance of hormones. It can also put pressure on the optic nerve and spinal column creating a build up of fluid. I have read cases where people were hospitalized because the fluid was too high and had to be shunted....the crazy part is they werent even big cysts. Some where actually smaller than mine. Quote Link to comment Share on other sites More sharing options...
issie Posted July 18, 2012 Report Share Posted July 18, 2012 Dani, What's Dr. G going to do about it? Did he refer you to someone else?Issie Quote Link to comment Share on other sites More sharing options...
misstraci Posted July 18, 2012 Report Share Posted July 18, 2012 Oh wow, I can't believe they would leave that unsaid, no matter how big or small of a deal, it should be mentioned. I've also had the bloodwork come back "normal" and then when I have a copy sent to me, I notice abnormalities, such as low B12, low whatever, etc etc.Did you call back the Dr. who did that scan originally and ask about? I think getting it looked into further is a good idea. if they could possibly remove the cysts, any chance at feeling better is worth a try, that's what i think!! Quote Link to comment Share on other sites More sharing options...
firewatcher Posted July 18, 2012 Report Share Posted July 18, 2012 Easy there, some docs report the incidence of pineal cysts is up to 40% of the entire population. Not everyone with a cyst has POTS. They can usually tell (and radiologists are generally better than the docs at reading these) by the margins, shape and size whether or not it would be a problem. I would be really cautious about having a doc dig around in my skull to remove these, as the doc will probably do more damage to your brain and surrounding glands than the cyst will.This is a good article:http://www.ajnr.org/content/28/9/1706.fullBTW, I have a pineal cyst too...it showed up on all three MRI's, but it took the last radiologist to notice it.It also took four years for any doc to mention my abnormally poor kidney function....but that is another story. Quote Link to comment Share on other sites More sharing options...
diamondcut Posted July 18, 2012 Report Share Posted July 18, 2012 I have also had a mri scan last week and the Dr told me i have a cyst near my pituitary gland but this would have been there since birth and as nothing to worry about. Would everyone agree with that comment? Quote Link to comment Share on other sites More sharing options...
Christy_D Posted July 18, 2012 Report Share Posted July 18, 2012 My son has a small cyst on his brain that doctors also dismiss. He also had an MRI myelogram from his head and down his torso where several cysts were found on nerve endings. These were also dismissed as not being anything important, but I often wonder since POTS/MCAS is still having research done to figure them out.Christy Quote Link to comment Share on other sites More sharing options...
HyperPOTS8 Posted July 18, 2012 Report Share Posted July 18, 2012 I have a posterior pituitary cyst, but was able to find that it is unchanged from a prior study done a few years ago (which did not make note of it!). I had a dedicated pituitary MRI anyways which was recommended on the MRI report. I would ask your MD to have a neurosurgeon review your films and see what they recommend. There are benign things and not benign things that can occur in the pituitary. You want to be sure! Quote Link to comment Share on other sites More sharing options...
Birdlady Posted July 18, 2012 Report Share Posted July 18, 2012 This is why I review my lab work and MRI/CT/XRay reports etc etc. Of course I can't look at a scan and made heads from tails with it though...LOL All looks like blobs to me. I would let your doctor followup and do some more investigation. I'd be scared to have anything removed from my brain unless I knew for sure. Brain surgery is no small thing!! Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted July 18, 2012 Author Report Share Posted July 18, 2012 Problem I have is its now over 1 cm, which means it went from 7mm to 1 cm in a year...Im seeing Dr. G next week and ill talk with him. I know there are risks for surgery but there are also risks keeping it in there. Im upset because there were specific symptoms such as seeing a blinding white light and severe migraines, that with this diagnosis should have been mentioned. I guess im just upset that they fail to mention these things at all. Quote Link to comment Share on other sites More sharing options...
Birdlady Posted July 18, 2012 Report Share Posted July 18, 2012 Oh wow if it is growing, then yes that is very concerning. I hope you find some answers! Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted July 18, 2012 Author Report Share Posted July 18, 2012 Also after doing tons of research, most doctos will almost always say its not a big deal. Most of the patients who had to have theirs removed, had multiple doctos tell them is was nothing to worry about, when in fact it was causing issues and had to be removed. You wouldnt believe how many people i found with these cysts that are experiencng low bp, passing out, tachycardia, pretty much a ton of POTS symptoms. Im not set on having it removed, but it would be nice if my old doctor would have at least mentioned it to me. Its like my brother... he was having stomach pain, bleeding ect and they kept on insistng it was just IBS, until he spiked a 105degree fever and later found he has ulcertive colitis. Im sick of the non chalant attitude i constantly see. Quote Link to comment Share on other sites More sharing options...
jangle Posted July 18, 2012 Report Share Posted July 18, 2012 Makes me wonder if I have a cyst? I've had two brain MRIs, 5 years apart from each other. Multiple doctors reviewed it and told me it was normal, so I would think someone would have mentioned a cyst - but maybe not?I'm too afraid to look at the image myself. Quote Link to comment Share on other sites More sharing options...
issie Posted July 18, 2012 Report Share Posted July 18, 2012 I'm too afraid to look at the image myself.Knowledge gives power. I have a brain meningioma in my left frontal lobe that is growing and also have vascular enlargements in my pons area. Still on a watch ---every single year. Once you get past the initial shock of that shouldn't be there - unless you can for sure know that this is causing issues - I'd be careful about jumping into brain surgery When they first discovered it though, was when I was having such severe issues with my gait, weakness and tremors. But, all of those things have gotten some better. I do think, however, that the meningioma may be causing some of my weakness. Because most of my issues are on my right side and the tumor is on the left. The left side of your brain affects the right side of your body. It wasn't long after the discovery of these things that I got my POTS dx. But, I had been searching for a dx for years before this discovery too. I guess meningiomas are more common then people know and some people never even know they have them. I do know someone who's meningioma was much smaller than mine and she had it removed and her POTS symptoms did go away. Not really wanting to have a piece of my skull removed to get at it though.Issie Quote Link to comment Share on other sites More sharing options...
sue1234 Posted July 18, 2012 Report Share Posted July 18, 2012 I had a brain MRI done in 2006, right after my POTS began. The report said everything looked fine, but I was curious about endocrine issues that might be related to the pituitary gland, so I sent a copy to a neurosurgeon in a respected facility. He said he saw "two hypointense areas" on the pituitary. When I read up about "hypointensities" on pit MRIs, they suggest tumors, which are almost always very small anyway, but cause great problems. The n.s. stated that if I ever show abnormalities in the cortisol axis that it should be seriously looked at. But, with all my numbers back in '06 looking normal, he recommended just testing every so often. This year, I had both high-normal cortisol and ACTH, so it's looking different now. I showed that neurosurgeon's report this year to an endo, and he made no comment about it. So, you spend years wanting someone to really address things, and you can't seem to get help.BTW, I've had a couple of more pit MRIs over the last few years, and the reports keep coming in as "normal". I'd be curious if the n.s. would see anything else. Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted July 18, 2012 Author Report Share Posted July 18, 2012 For me, its like buying a used car and it having something wrong with it and the dealer doesnt tell you. Later you notice the problem and they say they didnt think it was a big deal. I dont think its right that they hold back info because they dont think its a big deal at the time or dont want to scare you. The patient shouldnt have to find out from their medical records because that just adds more anxiety and confusion. Quote Link to comment Share on other sites More sharing options...
issie Posted July 18, 2012 Report Share Posted July 18, 2012 For me, its like buying a used car and it having something wrong with it and the dealer doesnt tell you. Later you notice the problem and they say they didnt think it was a big deal. I dont think its right that they hold back info because they dont think its a big deal at the timeWith a car you have 30 days and you can return it -----I want a new body ----what do I do about that one. Issie Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted July 18, 2012 Author Report Share Posted July 18, 2012 haha soooo true issie!! Quote Link to comment Share on other sites More sharing options...
yogini Posted July 19, 2012 Report Share Posted July 19, 2012 It is really sad and unfair but we really can't rely on these doctors. I am so glad the cysts were found. I do hope you get treatment and your POTS goes away! Quote Link to comment Share on other sites More sharing options...
julieph85 Posted July 19, 2012 Report Share Posted July 19, 2012 Makes me wonder if I have a cyst? I've had two brain MRIs, 5 years apart from each other. Multiple doctors reviewed it and told me it was normal, so I would think someone would have mentioned a cyst - but maybe not?I'm too afraid to look at the image myself.What are you afraid of seeing? Quote Link to comment Share on other sites More sharing options...
friday7 Posted July 20, 2012 Report Share Posted July 20, 2012 Oh my Gosh I know just what you mean. The stupidity of such smart people amazes me.I had three abnormal test results . My doctor ordered the tests. I got the results in the mail from Labcorp. So I wait to hear from her. Nothing. I call the office and ask to speak to her about it...nothing. I call again..nothing. Next time I call, she's left the office..for good. I have to see a new doc and wait until the 1st to talk about my results? I am so sick of doctors. I mean I know there are some good ones out there but there are sooooo many jerks. After years of it it makes you so, well, sick. Quote Link to comment Share on other sites More sharing options...
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