I have a pineal cyst and my symptoms are getting worse. I have terrible headaches, blurred vision, extreme fatigue. I'm being told not to worry about anything.

I am trying to find out is there anyone that knows of a surgeon in Florida that can help? Or is there anyone that has had there cyst removed, if so who and where was it performed?

Any help would be appreciated.

Can anyone help me?

[This message has been edited by BCarp0707 (edited 09-14-2003).]

Originally posted by BCarp0707:
I have a pineal cyst and my symptoms are getting worse. I have terrible headaches, blurred vision, extreme fatigue. I'm being told not to worry about anything.

I am trying to find out is there anyone that knows of a surgeon in Florida that can help? Or is there anyone that has had there cyst removed, if so who and where was it performed?

Any help would be appreciated.

Can anyone help me?

[This message has been edited by BCarp0707 (edited 09-14-2003).]

Try Dr. Lu. He's a neurosurgeon in Winter Park...near the intersection of SR 50 and Mills (17-92). I have a 2.5mm cyst that he is monitoring. He described a surgical option he was willing to perform if my symptoms get to be too much to bear.

Originally posted by mojen:
Try Dr. Lu. He's a neurosurgeon in Winter Park...near the intersection of SR 50 and Mills (17-92). I have a 2.5mm cyst that he is monitoring. He described a surgical option he was willing to perform if my symptoms get to be too much to bear.

What kind of symptoms do you experience?
I had an MRI done April of this year. I was told that I have a Pineal Cyst but they didn't tell me what size it was. I was told "not to worry about it" that it would only cause me problems if it got larger and started pressing on surrounding areas. I have many symptoms that four of my doctors conclude is from Fibromyalgia. $10,000 and four doctors and I am only worse now than before. I'm so disgusted and fed up.

I also suffer from chronic severe insomina and cannot sleep unless I take 20/25mg of Ambien a night. If I don't take it then I'll stay awake 2 sometimes 3 days. This last weekend I was doing research on the net about sleep problems and discovered that the Pineal Gland is the only area in your brain that produces Melatonin! All my doctors know of my severe sleep problems but no one mentioned anything about if having a cyst there could cause sleep deprevation. This may sound really ignorant but is it possible that my cyst has cause the pineal gland to STOP producing melatonin?

What kind of surgical procedure is needed to remove the cyst? Aspiration or actual opening the scull and cutting?

Thanks for listening.

There is much info available about pineal cysts. My daughter had a pineal cyst for many years. She recently had surgery.

Pineal cysts definitely cause many problems.

You could have your melatonin checked at Great Smokies Diagnostic Lab. You could probably do this through the mail. We did. This was the most accurate test we could find to check this. It checked the level different times of the day. It is a painless test which checks saliva.

I have 13 medical journal articles about pineal cysts and they suggest they need to be surgically removed. One was written by our US Government at Walter Reed Army Medical Center. If you are interested in the info please contact me at glorybound101@hotmail.com.

If you have visual problems please suggest a VEP (visual evoked potential) with is painless and will show if you have nerve damage behind the eyes from the cyst.

Also, an EEG may be a good idea too. If you have tremors, jerking of your body, staring, or blacking out
you may be having seizure activity.

I hope and pray this is helpful.

Love and prayers

Dear mojen,

Thank you for the info on Dr. Lu, I will contact his office.

My cyst is not as large but my symptoms are terrible and getting worse. I will not give up hope to find help.

Thank you again.

Belle45,

I understand your frustration, I too have heard the "Don't worry about it, the symptoms can't be from the cyst". Well I also know that they are. Blurred vision, extreme headaches, inability to sleep. Be persistant and look for other Dr's and don't settle for no help. I get very aggravated but I won't stop.

Dodger8 was a big help to me. You can E-mail her @
glorybound101@hotmail.com, she is very kind.

Best of luck to you.

Beth

Dodger8 & BCarppo707,
Thanks so much for the reply to my email and for the info coming. I have an appt. with my Neuro on the 14th and IF I decide to keep it then I will go armed with all of the info I have been gathering and comments from other PcP(pineal cyst people).

I am so disgusted with all 4 of my doc's that I don't want to see any of them anymore. What I find so difficult to come to terms with is how callous they are and how they act like they are god's gift to their profession and how dare patients question them and if we do how they ignore you. My internist is the one who I am most upset with because he just blows me off when I tell him that I HAVE NOT been the same since I had that dreadful Viral Meningitis. I KNOW ME, I KNOW MY BODY, I KNOW HOW I WAS BEFORE so WHY, WHY, WHY does he just dismiss it and tell me, "Karen, I just think it's stress, you shouldn't still be having symptoms from VM." I've looked him in the eye and told him, "Well maybe I shouldn't but I AM." [blood pressure gets high just thinking about it]!!!!!

I've done extensive research on VM and it is rare for people to have permanant damage from Viral Meningitis BUT it is a valid claim. I've saved the info I've found on that and just want to throw it in his face and say EXPLAIN THIS.

OK, I better got off my complaint soapbox or else I'll be sideways and twisted all night (more so than usual).
http://www.healthboards.com/ubb/mad.gif http://www.healthboards.com/ubb/mad.gif http://www.healthboards.com/ubb/mad.gif

Good luck to all and thanks for any info you give.

Belle

I also have a pineal cyst. Mine is 5mm by 9mm and I was also told not to worry about it. I will have another cranial mri next june to see if its grown. Doc says if it hasnt grown then to forget about it. They are more concerned with the PTSD/panic/anxiety and severe depression I have from a head injury in January. Funny thing is I have kinda forgotten about it and put all my symptoms down to the other diagnosis i had...like post concussion syndrome, bulging discs and now permanant neck and right shoulder muscle damage. I live real close to winter park and would love to see what that doc thinks but right now I see so many docs I just dont want to go to any more. I also have a dropped bladder and other things going on. I cant decide whats more important because i can no longer drive due to partial complex seizures (also a result of accident) and I dont know if my symptoms are from the host of meds im on or what. Im so confused. I wish you all the best.
Take care,
Tigre
PS
I was also told that unless the cyst reaches at least 1cm most docs wont touch it and that the cyst of my size wont cause symptoms....who knows anymore?

I have a cyst of about 1 cm. The MRI radiologist didn't sound very concerned about it. All he suggested was that I have another MRI done with contrast just to be double sure. I haven't gone back, though. I figured if he wasn't too concerned, then he probably only recommended I go back so he could bill my insurance company for another MRI. Anyway, I don't experience any of the problems you have described here. I was having terrible migraines earlier this year for about 3 months (which prompted the order for the MRI) after I got off of the antidepressant Lexapro but that has since cleared up. I sleep fine and my vision is fine. The meds I take include Unithroid and Provigil and these have been working great to keep my energy level up. I take 5-HTP (a serotonin precursor similar to St. Johns Wort) which I believe helped take my migraines away. Anyway, I just thought I'd share my story. Everyone is different. Something that can have a profound effect on one person may not have any effect at all on another. Good luck to you.

Tex

Tex,

You are one of the lucky ones, most everyone I have spoken with or heard about have the same or similar symptoms.

You should do what you feel most comfortable with, I did have the 2nd MRI with contrast. I feel that anything that will help me track the growth of my cyst will only benefit me.

I was thrown from a horse about 3 years ago with some injuries to my neck and back. My doctor at the time wanted to make sure that my headaches were related to the neck injuries. The MRI that was taken at that time was clear. I went through alot of testing and found that I had 2 herniated disk in the neck. After massage therapy and time my headaches went away in about 6 months.

About 1 year after the accident I started experiencing the headaches again. I went to the doctor after realizing the massages and other things I was doing weren't working and he insisted I have another MRI. It turned up that I had the csyt. I went through about 3 doctors before I found this one and he has been very understanding and helpful. Not discounting what I am going through, he is turly concerned. I am going to keep track of the growth and other symptoms. And if at sometime I can't tolorate the pain I will have a true history to give to a surgeon.

The meds you are on for increased energy (Unithroid and Provigil), if you don't mind, are they prescribed?
Is there a medical problem that requires you to take them? I understand if you choose not to respond, I was just curious.

I hope you continue to go without any problems and I wish you the best.

Beth

Hi Beth,
Did your doc say that maybe the cyst was caused by the accident you had? I had a head injury with the bulging discs and a host of other things as well when a 5-6 foot iron door fell and split my head (close to the right temple) open. I had a CT scan done at the ER and the doc said i had a concussion and mentioned nothing else really (that i can remember I also have short term memory loss from this) but I know he didnt mention about the pineal cyst. After several months of headaches and meds my neurologist had me get a cranial mri with contrast and it showed a 5mm by 9mm pineal cyst. He wasnt to concerned and said that I probably had it for a long time before the accident. But I have had cat scans done before this and also the day of the accident and nothing has shown. WOuldnt it have shown on the CT scan that day? Im so confused and now i have constant tremors in my right arm and hand after a major anxiety attack (my post about that is on the stress board) my mom says its my meds...but ive been on them for months and never had a prob before. Could the cyst be causing some of this and could it be a result of the accident that i have this? I havent seeen many people say they had a pineal cyst as a result of an accident but i dont believe i had it before...ive had scans done numerous times in childhood and also for a migraine one time at the er and nothing showed as well as the day of accident. I hope im making sense i am just not the same person i used to be. Any info you have would be great!
Take care,
Tigre

Tigre,

I asked my Dr and he said that he did not think that the csyt was related to the accident. I too have wondered if it is related because I didn't have any of the problems I have now.

If I were you I would request a copy of your films, I have copies of all the MRI's and scans and will continue to get copies. That is my only proof and way for me to track the growth.

I wish somehow we could get involved in a study with a hospital or lab or something. Find someone that could truly answer all of our questions.

E-mail Cheryl (glorybound101@hotmail.com), she has been a wonderful person with alot of information.

I wish you all the best and keep me posted on your progress.

Beth

Mine (1cm) was found on CT a year ago and my docs totally brushed it off, no followup to see if it's growing. I don't really have a diagnosis, but I'm finally doing ok with a bipap machine & lots of meds...should I push for an MRI?

I don't understand why doctors say stuff like this is "incidental." As expensive as brain scans are, do asymptomatic people routinely get their head examined just for kicks? I think not!

The meds you are on for increased energy (Unithroid and Provigil), if you don't mind, are they prescribed?

BC...
I don't know anything about the other drug but I was prescribed Provigil for extreme fatigue. Provigil is used for Narcolepsy(sp?) which I DO NOT have...just the opposite. Provigil is a prescribed medication which is very expensive. I was taking 200mg a day, a 7 day supply (14 pills) cost me $115.00 and they did NOTHING at all for my fatigue. I might as well been taking sugar pills. I have read posts from others on the Fibromyalgia board who say that they take Provigil and have had great success with them. Just depends on the person.

Good Luck!

BCarp...You're welcome. I was lucky in being referred to Dr. Lu by my primary. My cyst was found by accident when I had a scan to try to rule out a tumor causing hearing loss in one ear. He said that the headaches I experience are most likely due to incresed intracranial pressure because the cyst produces fluid and swells. This puts pressure on the aqueduct of Sylvius. He told me to have repeat MRI's yearly because if it gets any larger at all, it will have to come out. Other than that, he mentioned going in to cut a window in the cyst so fluid can't build up in it, but if I'm going to have anything done inside my skull, I'd rather just go all the way and have it removed. He also mentioned that any MRI's done should be closed, not open, because the resolution is much better. When you're dealing with mm, you really need the closed MRI's to track the growth. I would definitely suggest to anyone out there who is frustrated to stick only to dealing with a neurosurgeon. Surgeons are much more likely to want to go in and remove something than a primary, an internist, or a neurologist. The neurologist I went to told me that the pineal gland was a "painless" area of the brain, and that my headaches were migraines. However, after six different migraine-specific prescriptions that made the headaches worse, I went back to my primary to get a referral to a surgeon. Besides the headaches, I experience staring spells, occasional visual aberrations, and problems sleeping. I currently don't have any medical insurance, so my cyst problem has been put on hold. I hope that any of this information is helpful to anyone who may read it. Know that there are docs out there who are educated about these cysts and are willing to be aggressive and proactive in treating them.
Take care, all. My prayers are with you.