In 2002, I started seeking the care of a neurologist for severe headaches, blurred and double vision, left-sided weakness and partial paralysis, slurred speech, increased fatigue and sleepiness, and generally not mentally being able to "keep up" well enough to do my job (as an RN--couldn't keep track of what patients I'd medicated, etc., not cool!). I also was having trouble driving, because the big signs on interstate were blurred. Some breathing problems, too. When they did the MRI, of course they found an 18mm pineal cyst, and said it was nothing to worry about, not causing these symptoms, and no need for follow up. Unfortunately, I was so foggy I just went along. I was diagnosed with migraines, but did wonder since when migraines made me drag my left leg sometimes even without a headache. I am currently on disability for these things. I had done better after being put on anti-seizure meds for the migraines, but lately I'm having similar symptoms again to when this all first started, back in 2002. Could this cyst (lovingly referred to by my friends as my "extra marble") be growing? Would stumbling, being off balance, less reaction in the left pupil than the right, less reaction in the left side of my uvula than the right (noticed by the chiropractor when he checked me after noticing the balance issues), as well as increased initial symptoms mean this thing is rattling around again? Time for another MRI? After the reading I've done, sounds like 18mm isn't a small one...whatcha think?? Should I take my marble to town?
Wow, I have the same symptoms as you! And I'm being treated for "migraines" as well, especially since my 13mm pineal cyst wasn't observed to be growing after 3 months. I actually took a look at my latest MRI and when I used the built-in measurement program, I measured the cyst to be nearly 15mm...so I wasn't sure where they got the 13mm from. They probably didn't even bother measuring it after this second MRI.....
The thing is, I think I'm having issues with my thyroid gland--and maybe even my ACTH production (which would affect my adrenal glands)--because of this cyst, especially if it's inhibiting blood flow to my pituitary gland or hypothalamus. I think the issues with my thyroid gland are making it difficult for me to swallow, perhaps contributing to the double vision, and causing me to have a slew of other symptoms--like dry skin, fatigue, and low blood pressure.
Have you had any bloodwork done to look at adrenal insufficiency or thyroid disease? If the cyst is affecting your pituitary gland in any way, this might offset the amount of hormones the pituitary is producing, causing some of your symptoms--though certainly not the left-sided weakness, which I have also. Out of curiosity, have you developed an essential tremor?
Keep me posted on how you're doing. I'm very interested to hear what's going on, and if you're able to get help for this.
Thanks for your response! No, I have not developed an essential tremor. I keep an eye on my thyroid levels because of a previous episode of thyroiditis. So far, I've had normal thyroid levels, although I also use a Kelp supplement just to make sure. Some of the symptoms you are describing, particularly ACTH and adrenal symptoms, can be related either to thyroid or to a pituitary tumor, known as Cushings disease. May be something to look into. Although Cushings usually comes with high blood pressure and weight gain, it can cause visual changes as well as pineal cysts.
I just called my neurologist today and asked for another MRI. I pulled out all my old info, and found that, just as you did, when I measured the cyst myself using their scale on the film, it measures larger than the 18mm originally quoted. I also found paperwork in the packet, where I had forgotten that I had a second MRI a month after that, and the cyst had grown to 2.2cm, or 22mm. So, I hope my neurologist agrees to bring my extra marble in for a photo shoot! Like my friends tell me, looking on the bright side, once it's out that you have an extra marble, you can get away with almost anything! 8-)
No problem! I'm always happy to help a fellow pineal-cyst-sufferer. =)
Be careful with the use of Kelp...you could give yourself hyperthyroidism instead of hypothyroidism lol...neither are fun!
I was wondering if I have secondary adrenal insufficiency...I have some of the symptoms (not generic symptoms that can be attributed to other diseases--but things like dark patches on both elbows). I think I have a mix between hypothyroidism and secondary adrenal insufficiency. Now, I just need to get a doctor to actually look more closely at my bloodwork and see if it all makes sense. I can't seem to get anyone to care enough, sadly.
It's cute that your friends call it your extra marble. I'm not angry/annoyed at mine, if that makes any sense...I'm actually kind of intrigued by it. It has certainly spurred me to learn more about the brain, and even consider a career in Neurology. Though, come to think of it, maybe it's making me go crazy!
I've noticed that when I use the word "tumor" to describe it, people tend to freak out. But when I use the word "cyst", they just blink and me and say "oh" instead of "oh my gosh!" Theoretically, it IS a brain tumor, but it's amusing to observe that the word "tumor" has come to mean solely something "malignant", when it really means an "abnormal growth".
I hope you and your marble are doing alright! You have a good Neurologist if they let you ask for another MRI, and actually acquiesce to that request. I don't think mine would.....
Yes, I'm not angry about/with my marble, either. If I was, I'd have a heck of a time getting to it! LOL! When I try to explain to people what's wrong, I only occasionally tell about the pineal cyst, and usually stick with "atypical migraines". You're right about how folks view the cyst vs. tumor terms. All depends upon how much time I have to explain, and how important it is to me that that person in particular understand. It helps I have the MRI films, so close friends and family can see snapshots of the marble. It kinda helps in the explanation.
I did use too much Kelp--once. That was all it took! I was shaky and nervous all day that day. That, plus blood levels, and my family Dr., who's a gem, helped me regulate it. I see him this upcoming week. I was curious where to go next. I had called the neurologist about the increase in left-sided symptoms, and she prescribed nausea medicine. Go figure! Not that I'm not grateful for nausea meds during migraines, since that has also increased, but unfortunately she left the left-sided weakness not addressed, and refused the request for an MRI. Of course, this all transpired through a nurse practicioner with an attitude, not just me and the doc, that makes a difference, too. So, we'll see what my family Dr. thinks. My hubby thinks maybe I should get a second opinion from Duke or Johns Hopkins, the two closest big hospitals other than UVA from us. We'll see--I'll need to research it, and I'll let you know if I find out anything helpful.
I'm afraid I don't know enough about adrenal insufficiency to help you much. I do know that I've seen lots of supplements aimed at correcting it, but as you pointed out, you'd have to be careful and go cautiously. I'm sorry you've had a hard time finding a Dr. who is willing to delve into your medical problems and get some answers for you. All I know to tell you is keep asking around for good Dr's, and pray God puts the right one in your path with just the right knowledge and intuition needed for your situation. If it's any comfort, know I'll be praying for you, and that God loves you no matter what! Keep a good thought, and keep me posted. I'll let you know what I find out. 8-)
I had another TIA (transient ischemic attack) episode last night, though I guess it's not so much a "mini-stroke" as it was being caused by migraines, perhaps--my neurologist said that migraines can cause much of the same symptoms. Either way, they both sound dangerous to me!
My mom wants me to go to Johns-Hopkins if I don't get better (or get an answer) soon...I'm going to schedule an appointment with another endocrinologist, but if they are unable to do anything for me, I'll make the three hour trip to JHU and get some sort of general evaluation. The problem is, I'm only seeing a neurologist consistently, and I still have a lot of symptoms he won't address/can't address because they're more neuroendocrine to endocrine, than anything else. I really think my thyroid is still a problem, and I think I'm exhibiting some signs of adrenal insufficiency, which may be clouding my thyroid diagnosis--for example, they can't figure out why I've lost weight even though my TSH is elevated, meaning my thyroid is under-functioning, which should make me gain weight.
My neurologist didn't prescribe any new medication...fortunately, I don't get nauseous too often. I get headaches all the time, though not "pulsating" ones like a migraine...and I feel a lot of pressure in my head, coupled with the occasional dizziness and of course, double vision. Other than this, the rest of my symptoms that are driving me crazy are ones he cannot explain or help me with--the essential tremor, swollen and painful joints, edema in my lower extremities, feeling really hot at times and sweating yet feeling freezing the rest of the time......the list goes on and on.
I'll keep you posted, too--thanks for the helpful information! If you head to JHU or Duke, let me know how that goes. I would recommend JHU over Duke, hands-down, but whatever is closer is probably the best bet for now. You can always use the second one as a back-up. =)
Good news! My family Dr. was really disgusted when he found out that my neurologist had not been at least doing a yearly check on my pineal cyst. Luckily when I went in to see him yesterday, I was have a "dizzy day", so he got to see some of my symptoms first hand. He was already in the process of ordering an MRI before I could even ask for one. Also, he is sending me to a neurosurgeon, as oposed to a neurologist at UVA (University of Virginia) to see about having the cyst removed if it is still the same size or larger, because he is concerned about it putting pressure on other things in my brain, such as the brain stem. Like you, I have the hot and cold thing going on. Pressure on the brain stem would explain that, as the brain stem is responsible for temperature control, as well as the control of many vital organ functions. Hummm...and we wonder why we have these problems! I am so blessed to have a good family Dr.! I told him about an email I got from someone else who had a craniotomy done to get her cyst removed that way, and she is much, much better, except some nerve damage. Her cyst was 3cm in diameter at the largest axis. She had sent me a website of a place in Los Angeles where 2 people she knew of had their cysts removed sucessfully via endoscopy, a scope through the nose or a small incision in the eyebrow. The scope goes through the sinuses and into the brain that way, and recovery time is 24-48 hours! This was a specialty place, but when I talked to my doc, he said they have been doing this surgery since he was in med school, 15-20 years, so it's not new, just see a neurosurgeon with the films. Definitely something to think about! I have the MRI Monday, and see the neurosurgeon after that. I'll let you know what happens after that. Yep, the marble's going to town for a photo shoot! Heehee....I've definitely heard good things about JHU. I think a trip there might be a good idea. Maybe to a neurosurgeon, as well as to an endocrinologist? Getting rid of our extra marbles may solve a myriad of issues. I tell you, I'm beginning to have more hope that we'll lick this thing yet! 8-) If you want to look at that website I was sent, it is www.skullbaseinstitute.com. That will give you more info. Hope this helps! Take care of yourself, my friend, and we'll keep in touch! Have a great day!
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