Headaches/Inner ear pressure

[serene1198]

In June of 2007 I was diagnosed with labrynthitis, which if you ask me, has not totally gone away.   Since then I have pressure in the back of my head on the right side (Cerebellum) area.  When the pain gets really bad, I feel alot of pressure in my ear and I lose most of my hearing.  At times stationary objects appear to be moving, and I have dizzy spells (standing/sitting).  There are mornings when I wake up after 8-9 hours sleep, and the room is spinning like I am intoxicated or all the oxygen has been cutoff to my brain.  If I don't get up right away to stop the spinning, I vomit. This only happens when I lay on my back with a  pillow under my neck.  I have explained all this to my neurologist.  I have been for 3 MRI's since November.  The last one being today.  The first MRI was to check the nerves in my middle ear, which were normal.  The MRI showed a cyst in my pineal gland.  The doctor at the MRI center would not issue a report on the second scan because they needed more images. ??  Today was a more detailed scan of the area slightly above my cerebellum, and the pineal gland cyst.  I know I'm not crazy, but I feel that they are somehow connected.  I have never suffered from headaches before.  The pressure pain is always there, and there are times the pain gets so bad I get sick.  During the extreme pain it hurts to chew, cough, or talk.  The pain in the ear causes my eyes to tear.

Lately my tiredness is getting worse.  I can sleep for 8-10 hours and I feel exhausted when I wake up.  I'm a single Mom, and this has really affected my family.  I wish I knew why this was happening.
If anyone can give me a clue, I would really appreciate it.

[ptwellness]

I have 9mm pineal gland cyst.  I also have ringing in my ears and occasional deep stabbing pain in my ears.  I have lots of other symptoms that I know are related.  I have been pretty normal until very recently.  I am 32 mother of 2 and am scared.  I wonder how you are doing now?

Kristin

[cj1197]

I have been recently diagonosed with a cyst on my pineal gland.  I have not seen a neuro. yet.  I am also scared.  From what I've seen, it doesn't look like too many people know what this is or what to do with it.  I know one thing.  I am going to refuse to "sit and wait".  I have four small children and I'm trying to go back to school.  My symptoms include headaches, constant weak pressure on the back of my head.  When it gets worse it feels like it is right behind my left eye.  I have seen things moving, felt dizzy and nauseous, and passed out once.  I can't study because I can't stand to read a full page. I don't know what to do.  If anybody knows anymore about this please write in.  It helps to know that you are not alone.

[brokenbrilliant]

This may make you feel better -- see http://www.ajnr.org/cgi/content/full/28/9/1706

Apparently, a lot of people have pineal cysts and they do not always cause bad problems. I have a pineal cyst, as well, and I regularly have headaches that do not respond to medication.

[ycompanys]

Neurologists may be very quick to tell you that you are fine with a pineal cyst and that it is not causing your symptoms.  But beware:  1) Doctors in general don't really understand what the pineal gland does; and 2) Some don't seem to understand the difference between symptomatic and asymptomatic pineal glands and tell their patients not to worry about pineal cysts.

Some things to keep in mind, according to the medical literature:

1) The most common symptom is headaches, followed by vision problems, dizziness, and balance problems, and in some cases insomnia, nausea and cognitive deficits.  In fact, a study that showed an almost perfect correlation between migraines and pineal cysts.  More rare are emotional lability, fatigue, ringing of the ears, and numbness / tingling.  In extreme cases, pineal cysts can result in loss of consciousness, suicide, deafness and/or seizure disorder.  So please take this seriously, particularly if the cyst is causing intracranial pressure such as hydrocephalus.
2) Pineal cysts can be symptomatic if they are larger than 0.5 cm.  Problems occur when the cysts cause compression in the brain, or when they are associated with apoplexy or hydrocephalus.
3) Radiologists cannot easily distinguish between cysts and benign tumors, often leading to misdiagnosis. NOTE:  A benign tumor is not metastatic, not malignant.  It is extremely, extremely rare to get a malignant, metastatic tumor in the pineal gland, so please do not worry about this unless your radiologist/doctor has told you otherwise.
4) It is common that patients are told that the pineal cyst cannot be affecting them after a neurological test.  But note that some patients present no neurological symptoms in these tests, while still having the symptoms in 1) above.
5) If you are in the 18-34 age group, your cyst can grow, so you should get MRIs every 3-6 months.  If your doctor does not want to, get a new doctor.
5) If you have to get surgery, get the following one but only if you have compression or hydrocephalus and your symptoms are incapacitating:  Suboccipital craniotomt with infratentorial-supracerebellar approach and microsurgical resection of pineal cyst.  Contrary to what is stated above, this is NOT brain surgery.  They access your pineal region from beneath the brain, so they do not affect your brain at all.  It sounds like a scary procedure but is actually straightforward for a good brain neurosurgeon.  The surgeon essentially inserts a microscopic endoscope that magnifies the area by 50x and uses a navigation system to get him there.  It is minimally invasive.  The medical literature says that most patients whose pineal cysts are not too large (e.g., < 4.5 cm) become completely asymptomatic after surgery.  The surgery entails a 6-8 week recovery, and a small incision in the head and removal of skull bone, which grows back after surgery.  The biggest risk associated with surgery is infection, as with any other surgery.
6) Women are much more likely to have pineal cysts and be symptomatic than men.  One theory is that pregnancy may induce the growth of pineal cysts and/or make patients symptomatic.

The most important thing is to get a doctor who takes your pineal cyst seriously.  It is a rare disorder, and few doctors understand it well.  So you will need to be persistent.

Good luck.