Aa
pineal gland cyst
Has anyone had surgery for a pineal gland cyst? If so have the symptoms subsided? I've been seeing a neuro surgeon for 3 years because of spinal stenosis and had 1 back surgery that wasn't successful. I recently complained of severe pressure along w/waking up w/a headache just about everyday. My MRI from April 2008 was reviewed and I was told that I had a pineal gland cyst .3cm. & 2 sphenoid cysts .2cm and I should've had a follow up MRI 6mos. I have symptoms of an abnormal gait, I've fallen many times, I've had a major change in my eyesight w/double vision, my hands & legs go numb, and since last summer I've had anxiety/heart palpitations which I've went to the ER for 2x. Now I'm having these "attacks" where along w/ the palpitations I've tremors in my hands, I feel like I'm going to pass out & I have trouble speaking. Now I'm thinking that some of these symptoms I was told were from my spinal problems have been from the pineal gland cyst. I have no insurance and need an MRI and more and more of these attacks keep happening, I want to go to the ER but I'm afraid they won't take me seriously but I'm also afraid that something more serious may happen if I wait. Any input would help. Has anyone had these types of symptoms as described in my "attacks"?
I had the surgery five weeks ago - no more cyst. no more symptoms. Go figure.
I started having headaches, daily and neck/ear/jaw pain back in May 2010 - sudden onset. . Went to an ENT, a dentist, a TMJ specialist, back to PCP. In June started getting migraines - about 1-2x a week lasting for hours.
They did MRI in July and found a pineal cyst 1.2x 1.7x1.0. More tests, more meds, doctors telling me I've always had headaches, they were sinus headaches, that the cyst wasn't causing the headaches. Migraines were coming 3-4 times a week - lasting 6 hours or more, I was taking way lots of drugs and not functioning well.
Saw a surgeon at Barrows Neurosurgical in Phoenix (where I live) and she said we should rule out all other possibilities, try different meds. Of course good advice- no one wants a craniotomy right?
My MRI showed no hydrocephalus but mild mass effect on the tectum.
Went back to the ENT, saw endocrinologist, opthalmologist, two neurologists and tried 8 meds. Kept getting worse. September had more MRIs , they showed no growth- so we decided to wait and do another set of MRIs after Christmas and see if we could find meds to control the pain. Was having migrines almost every single day at this point.Also neck, jaw, ear and facial pain, some motion sickness too.
Was taking a ton of pain meds and topomax and imitrex every other day , sinus meds- you name it I took it and nothing was controlling it. Woke with a headache every day, was with me all day, went migraine at night. Was horrible and I'm no wuss when it comes to pain believe me.
I ended up in the ER Oct 18th with a migraine we couldn't stop. I literally cried for hours, two doses of IV meds, stayed in bed a week. Saw the surgeon & she read everything & said all conservative measures failed, she'd do the surgery. So on October 25th I had brain surgery. Posterior fossa craniotomy - so they went in from the back of my skull (which is why I still have my hair) , endoscopic tube up there and pulled out the cyst . And now five weeks later I have no more headaches, migraines, jaw/ear pain. All done. I do have alot of fatigue, some nerve pain which they tell me will go away (sharp stabby pains on the side of my head above and to the side of the incision) but totally worth it. I couldn't function with the headache- was in bed in the dark most nights, couldn't play with my kids, was pretty horrible. But I'm good now.
Was a scary month but have lots to be Thankful for. Great surgeon, great health insurance, supportive friends, family and church. Made it through and can now enjoy Christmas without daily pain. I'm on NO MEDS at all now except my thyroid meds and some melatonin for sleep (pineal gland controls circadian rhythms and sleep/wake cycles and still having sleep issues) and still some neck pain they think probably from scrunching up due to the headaches.
DO not give up. Read on pubmed.com and other published medical journals. http://www.ncbi.nlm.nih.gov/pubmed/18005138
Talk to surgeons. Rule out everything else it could possibly be and do not give up. I have complete resolution of symptoms other then the nerve pain which should dissipate with time.
Hope some of this helps
Barb
I started having headaches, daily and neck/ear/jaw pain back in May 2010 - sudden onset. . Went to an ENT, a dentist, a TMJ specialist, back to PCP. In June started getting migraines - about 1-2x a week lasting for hours.
They did MRI in July and found a pineal cyst 1.2x 1.7x1.0. More tests, more meds, doctors telling me I've always had headaches, they were sinus headaches, that the cyst wasn't causing the headaches. Migraines were coming 3-4 times a week - lasting 6 hours or more, I was taking way lots of drugs and not functioning well.
Saw a surgeon at Barrows Neurosurgical in Phoenix (where I live) and she said we should rule out all other possibilities, try different meds. Of course good advice- no one wants a craniotomy right?
My MRI showed no hydrocephalus but mild mass effect on the tectum.
Went back to the ENT, saw endocrinologist, opthalmologist, two neurologists and tried 8 meds. Kept getting worse. September had more MRIs , they showed no growth- so we decided to wait and do another set of MRIs after Christmas and see if we could find meds to control the pain. Was having migrines almost every single day at this point.Also neck, jaw, ear and facial pain, some motion sickness too.
Was taking a ton of pain meds and topomax and imitrex every other day , sinus meds- you name it I took it and nothing was controlling it. Woke with a headache every day, was with me all day, went migraine at night. Was horrible and I'm no wuss when it comes to pain believe me.
I ended up in the ER Oct 18th with a migraine we couldn't stop. I literally cried for hours, two doses of IV meds, stayed in bed a week. Saw the surgeon & she read everything & said all conservative measures failed, she'd do the surgery. So on October 25th I had brain surgery. Posterior fossa craniotomy - so they went in from the back of my skull (which is why I still have my hair) , endoscopic tube up there and pulled out the cyst . And now five weeks later I have no more headaches, migraines, jaw/ear pain. All done. I do have alot of fatigue, some nerve pain which they tell me will go away (sharp stabby pains on the side of my head above and to the side of the incision) but totally worth it. I couldn't function with the headache- was in bed in the dark most nights, couldn't play with my kids, was pretty horrible. But I'm good now.
Was a scary month but have lots to be Thankful for. Great surgeon, great health insurance, supportive friends, family and church. Made it through and can now enjoy Christmas without daily pain. I'm on NO MEDS at all now except my thyroid meds and some melatonin for sleep (pineal gland controls circadian rhythms and sleep/wake cycles and still having sleep issues) and still some neck pain they think probably from scrunching up due to the headaches.
DO not give up. Read on pubmed.com and other published medical journals. http://www.ncbi.nlm.nih.gov/pubmed/18005138
Talk to surgeons. Rule out everything else it could possibly be and do not give up. I have complete resolution of symptoms other then the nerve pain which should dissipate with time.
Hope some of this helps
Barb
I have an 11 MM pineal cyst, which I have monitored. It appreared on an MRI in 2004, I wasn't told about it until 2008 when I saw an neurosurgeon for Chiari Malformation.
Chiari Malformation causes an increase in cranial pressure, symptoms are similar to the symptoms with the cyst. Headaches, blurred vision, astygmatisim, gait problems, SWALLOWING PROBLEMS. It compressed the brain stem and causes your ceraballum to get pushed into your spinal column, blocking your spinal fluid. It can causes cysts in your spine, which compress your nerves and cause pain. There is a forum for Chiari malformation on medhelp if you want more info. Symtoms increase with straining, bending, coughing laughing, etc.
If you don't have a copy of your MRI I would request a copy of the films and report. I am not saying you have Chiari Malformation, but I will say it's rare most it does apprear on reports and most doctors think it's nothing to worry about. I had brain surgery for this in Jan 2009.
I think it's worth looking into Chiari Malformation. Having both the cyst and Chiari Malformation it's hard to say which was causing which of the similar symptoms, but I do know Chiari causes the swalloing problems. When I would swallow my mouth would be paralyzed for a few seconds.
Chiari Malformation causes an increase in cranial pressure, symptoms are similar to the symptoms with the cyst. Headaches, blurred vision, astygmatisim, gait problems, SWALLOWING PROBLEMS. It compressed the brain stem and causes your ceraballum to get pushed into your spinal column, blocking your spinal fluid. It can causes cysts in your spine, which compress your nerves and cause pain. There is a forum for Chiari malformation on medhelp if you want more info. Symtoms increase with straining, bending, coughing laughing, etc.
If you don't have a copy of your MRI I would request a copy of the films and report. I am not saying you have Chiari Malformation, but I will say it's rare most it does apprear on reports and most doctors think it's nothing to worry about. I had brain surgery for this in Jan 2009.
I think it's worth looking into Chiari Malformation. Having both the cyst and Chiari Malformation it's hard to say which was causing which of the similar symptoms, but I do know Chiari causes the swalloing problems. When I would swallow my mouth would be paralyzed for a few seconds.
Swallowing is a voluntary muscle activity.
It could be neuro-muscular, or a physical issue with your throat.
There are specialty gastros that do testing just for this (I did all this type of testing) and then neurologists to evaluate the muscles.
Just keep that in mind.
It could be neuro-muscular, or a physical issue with your throat.
There are specialty gastros that do testing just for this (I did all this type of testing) and then neurologists to evaluate the muscles.
Just keep that in mind.
thank you for the info! sorry took so long to get back, the attacks have been lessening but i have had new weird symptoms. i finally get my insurance in oct. and my dr. insisted on getting a new brain mri along w/the cervical so i will soon find out if it has grown, my new symptoms that i thought was related to a tonsil problem have been difficulty swallowing, i get food stuck in my throat everyday if i eat something other than yogurt or something soft! and a weird taste in my mouth also i attributed to tonsils or some type of throat or ear, nose thing and i have had two attacks where i could not see well enough to move it was like looking through a pinhole w/white streaks going through it, also i have not gone one day w/o a headache and i can bring one on just by bending there is so much pressure when lying or bending over, i don't know anything to help w/this, i also attributed this to a ear nose & throat issue
Yes you can have a Pineal Gland Cyst removed, My son had suffered with symptoms such as abnormal gait, drop attacks, blurred vision, migraines & anything else that comes with the affects of pressure on the brain. We put up with Doctors telling us it was nothing and he had psychological issues and was making himself do the abnormal symptoms... He saw a Shrink and the shrink thought that would only be true if he was not having drop attacks. A human cannot literally manifest Unconsciousness.
We ended up finding a doctor called Charlie Teo whom removed the pineal gland cyst and the pineal gland and our son has been on the road to recovery since... It turns out that the CYST that was nothing was bursting and my son was having a type of a STROKE..... All i can say is Charlie is a life saver to us.... I hope that this helps you.... Oh Charlie Teo is based in Sydneys Prince of Wales Hospital and you can find out more information about him on the web just type in his name.....
We ended up finding a doctor called Charlie Teo whom removed the pineal gland cyst and the pineal gland and our son has been on the road to recovery since... It turns out that the CYST that was nothing was bursting and my son was having a type of a STROKE..... All i can say is Charlie is a life saver to us.... I hope that this helps you.... Oh Charlie Teo is based in Sydneys Prince of Wales Hospital and you can find out more information about him on the web just type in his name.....
The function of the pineal gland is to secrete melatonin. That is to help regulate sleep - sets the biological clock so to speak.
It is about 1cm long - so something 3mm can impact it.
It is also near the optic nerve - but double vision is not typical, usually pressure by something causes deficits in vision to the sides, not double, but the double could be fatigue.
You should see a neuro-opthomologist, a neurologist, and/or and neuro-endocrinologst to get evaluated. Is there some sort of way you can do that? I am not sure the ER is the best way, but a clinic or study?
It is about 1cm long - so something 3mm can impact it.
It is also near the optic nerve - but double vision is not typical, usually pressure by something causes deficits in vision to the sides, not double, but the double could be fatigue.
You should see a neuro-opthomologist, a neurologist, and/or and neuro-endocrinologst to get evaluated. Is there some sort of way you can do that? I am not sure the ER is the best way, but a clinic or study?
Have an Answer?
You are reading content posted in the Brain/Pituitary Tumors Community
Here are 15 ways to help prevent lung cancer.
New cervical cancer screening guidelines change when and how women should be tested for the disease.
They got it all wrong: Why the PSA test is imperative for saving lives from prostate cancer
Everything you wanted to know about colonoscopy but were afraid to ask
A quick primer on the different ways breast cancer can be treated.
Get the facts about this disease that affects more than 240,000 men each year.
