MAV and Pineal Cyst

Hello,

I was recently diagnosed with Vestibular Migraine but i also have a Pineal Cyst/Pineocytoma. I have seen several neurotologist who are sure i have Vestibular Migraine. I have a family history of it. But i have seen two neurosurgeons who believe the cyst is the issue as it is laying on the tectal plate in brain.

My symptoms all started in 2008 with a sudden onset of vertigo followed by months of getting back to normal. Since then i have always have motion sensitivity issues. Mainly in crowded and loud places, grocery stores, etc. If i sit at a stop light and watch traffic go by it throws me off. if i ran on a treadmill and got off it felt like the ground was still moving.

Over the past year i started getting quick spin vertigo. Mainly when staring at a computer at work. They would last 1-2 seconds. Recently I was getting pulsating tinnitus in the ear at times, random ear fullness here and there and a weird head pressure feeling on the top of head, back of head and sinus area. And just a real off feeling in my head. Was recently told i have convergence issue with eyes up close.

All tests were normal. I was originally diagnosed with vestibular neuritis. I tried a dose of verapamil at 240mg and it gave me weird issues.

Anyone have both a cyst and a mav diagnosis?

Thanks for reading!
-Joe

Hi Joe,

how big is the cyst?

My cyst is 1cm by 2cm. Dr thinks it is a pineocytoma.

Hi Joe,

sorry to hear about your cyst/tumor. I was asking since I had an pineal gland cyst found “incidentally” in my MRI as well and was told that is not the cause of my headache and dizziness (in my case, I do believe that the cyst is not the cause). Mine was 8 mm (no other dimension was indicated on the report).

I looked up what a pineocytoma is and I see that it is a benign tumor, which is different from a cyst. So I can’t really say much about it. Did you have hydrocephalus? Do you have freezing of your gaze when looking up? I read that these two former could cause MAV sx while the latter is a sign that shows the tumor is causing issues.

I have searched if other people on this forum were dx’d with MAV and the pineal cyst, and there was only one lady, but she never reported what happened down the road so I don’t know if her sx were from the cyst.

I hope you find the answers you need. I would caution you going thru the surgery route unless you are confident that it is the tumor causing your issues. On the other hand, you might want to look into what sx the tumor can cause instead of thinking of it as a “pineal cyst”, since the cyst and the tumor could be two different animals with different sx. Don’t know if I’m making sense.

Best wishes,
Asli

Thanks Asli. My Pineal lesion was incidental as well. One of my surgeons said it was a cyst, the other a pineocytoma. There is no way to tell until they remove it.

I do not have any upward gaze issues (Parinaud’s) or hydro. I do have increased head pressure in my head upon waking up in the morning. I get mini vertigo issues when i stare at the computer for a while. The cyst/tumor are one in the same as far as what they do around the area. Mine is said to be laying on the tectum( superior colliculus). This is the vision part of the mid-brain. Surgeons said this can produce visual issues including vertigo. Two of the Doctors i spoke to remove these. They are Dr. Sunil Patel at MUSC and Dr. Haryr Shahinian with Skull Base Institute in LA. Both said they believe it is the issue. Dr. Patel said he has seen this area 2-300 times and simply blowing on the Tectum can cause issues as it is that sensitive.

Have you checked out the Pineal Cyst facebook page yet? It is a secret group you can join. It has about 1,000 members and they are having issues with these. Some as small as 5-6mm. They have headaches, dizziness, head pressure, tingling, all sorts of stuff. Many are resolved with surgery. I would say do not discount your cyst yet.

How long have you had the cyst? Has any migraine preventative worked for you? You should check out the page on facebook. If you cannot find it let me know. I am very hesitant on surgery as i also have a migraine history, but not keen on trying a lot of drugs.

Here is a good link from a surgeon on these.

Hi Joe,

thanks for your concern and sharing info with me. Just beware of Dr. Shahinian. A cursory search on google brings up his name way too often for this type of surgery. Never heard of the other doctor.

Thanks again and best wishes :slight_smile:

Thanks Asli, Best wishes with you as well. If you find anything that helps with your symptoms let me know! Would be interested in trying it.

OK, will do - thanks!

Hello There!

I too have been dx with MAV, TMJ (along with grinding my teeth at night), a pineal cyst, and also a small benign pituitary tumor. I too feel dizzy especially when I am at work on my feet. When I walk fast down an aisle in a grocery store I feel like I am going to fall over. I can’t do rides at all not even water slides. Driving is ok. I have had a vertigo attack while in the car before but luckily I was not driving. I am often uncomfortable when driving far distances. Even a lot of movement on the TV bothers me at times. Sometimes I wake up with the spins and can’t get up. I can’t drink caffeine or alcohol as it makes things worse for me. MAV honestly is odd at times. I have went years feeling “normal” and then have fallen onto harder times for example more recently. All you can do is try to be positive. I went to a neurosurgeon, endocrinologist, otolaryngologist, and I am currently seeing a neurologist. All my tests have come back normal and have suggested that MAV is the culprit and that the tumor and cyst have little to nothing to do with my symptoms that I have experienced. Hope this helps.

Hi DML,

Thank you for your contribution to this discussion. I hope you go into a permanent remission of your MAV soon :).

Your post helps reinforce my belief that, in my case, the cyst shouldn’t be the issue. I’m pretty sure it’s my neck.

Have you tried preventive medications for MAV? Do you have sensitivity to fluorescent lights?
Thanks again.
Best wishes,
Asli

Hi DML,

Thanks for your input as well. I was just given Nori to try. I will give that a go, if not will then try Topamax. I still have my eye on my cyst as an fyi. Just due to the location of mine and many people on Facebook group that have similar symptoms. Hopefully, meds will work and i won’t need surgery. Thought, thankfully there are currently 19 doctors who recognize they cause issues if i ever need to go that route.

Joe

Hi again,

Im glad that you both have found my posting helpful. I am currently on nortriptyline 10 mg 2 per evening cause it makes me sleepy and at the same time i take 2mg of valium to help with the dizziness and also anxiety that unfortunately has resulted from the condition. My neurologist also put me on a magnesium supplement. The only other preventative ive taken is topomax but it made me feel like a zombie. I really like nortriptyline it has worked for me for many years. Unfortunately right now i am having a rough patch

Hey, i started the Nori about 4 days ago and currently o 10mg. Not really noticing much of a difference. Hoping to see some improvement when i bump up to 20mg. I am going to start a magnesium supplement as well and i will be retooling my whole eating method after reading heal your headache. I still have suspicions on the cyst and found folks to remove it if the drugs dont work. Fingers crossed the meds work :slight_smile:

Hi,
I to was diagnosed with MAV and enlarged pineal gland, unsure if it’s a cyst. Will get another MRI in 6 months to see if their is any change. I have been taking nort. 10 mg this week. My first week on this med. Hoping it will help things out. Have all the same symptoms, fullness in ears, popping sound, occasional head smashing migraines, but almost daily tension headaches. Dizziness can be a few times a day or went non stop for a month!! The floor felt like it was rippling from the ground up. I called it my bumpy boat ride/airplane turbulents/ people mover at the airport/ the thud u feel in your stomach when the elevator stops. My episodes last from minutes to 14 hours. I’m just trying to keep stress levels down, but can be difficult at times since my husband is on dialysis ,but at least he is on the transplant list.He is in pain or nauseous hey at least we have that in common. Headaches, nausea and dizziness. I often find myself in need of a morning nap.

Hi Lisa.

I hope the Nort. helps. I have a pineal cyst as well and my understanding from multiple neurologists, my own experience and reading is that as long as it’s a cyst below 1 cm, it shouldn’t cause any sx.

I wish for a speedy recovery to you and you mr husband. Stress is very important. I hope you do daily deep breathing and mindfulness exercises.

Best,
Asli

Hey Lisa,

Pineal Cysts/Pineocytomas do cause problems for some people. Many neurologists go by old school thinking that they do not. I know of at least 20 surgeons who remove them when they get above 5mm. I have consulted with 3. All can see it as causing a problem. But my symptoms are currently in check right now and i am holding off as long as i can and making sure migraines are not my cause. But don’t think they don’t cause problems. But it is safe to rule out Migraine disorders first. There is a new surgery they are developing as well called MRI Focused Ultrasound to remove tumors/cysts without opening skull.

Facebook has a good group with over 1000 people world wide that have these cysts and have ruled out all other issues. Many have had surgery. Many had migraines that they no longer have. Dizziness and tinnitus that they no longer have. The cyst can push on the Vein of Galen, Tectal Plate, Thalamus, Cerebellum all of which can cause a whole range of problems. All told to me at my surgical consults.

I saw Dr. Allen Freidman at Duke for mine again and he agreed to operate when i was ready and said i was not crazy to look at surgery. He removed one the day before my appointment. Thankfully mine is slow growing. He also said all my symptoms can theoretically be caused by the cyst. I value his opinion. He is a highly respected surgeon and knows this area well. But you have to be careful removing these. The surgery is straight forward. But some folks have lasting fatigue, eye issues and still get migraines after removal. Size doesn’t matter, but the location and if pressing on anything does.

Dr. Dong Kim has a slide show on Pineal Cysts and is doing research on them and all the problems they can cause as is Dr. Sunil Patel at MUSC. They are both well respected Doctors. Many have gone to Dr. Shahinian in LA, but i just did not feel comfortable with him. Felt to salesy with him.

Some other surgeons are Dr. Michael Sughrue, Dr. Sunil Patel at MUSC, Dr. Bruce in NYC, Dr. Zomorodi at Duke, Dr. Nakaji and Dr. Spetzler at Barrows, Dr. Charlie Teo in Australia amongst others. Dr. Patel and Sughrue will review your MRI for you if you mail it to them. They don’t push for surgery like Shahinian does. They make sure to rule out everything. Some have symptoms subside so they tell them to hold off.

Hope this helps. Definitely rule all options first and surgery should be last resort. If on facebook check out their groups. A lot of valuable info there as well. Just don’t think about the cyst daily, that can drive you mad, or at least it did to me lol.

Joe

Also to add. Some people have had surgery for these cysts, and i know of one on FB recently, and her headaches are still there, even appearing worse. Each person is different. That is why i cancelled my surgery date. I needed to be sure i was gonna be better off to have the surgery, not worse. There is no guarantee. Rule auto any autonimmune disorders, lyme disease, POTS, if you haven;t already.

And I agree with Asli on stress. Reduce it where you can, also pick up the book heal your headache if you haven’t It is a great read. Try taking Magnesium if you haven’t already, many have help with that. Look for headache triggers and exercise when you can. It is rough for me when exercising as i get the pulsing in my head but feel better after i do.

Good morning. New member to the group here. I 've recently been diagnosed with a 26 mm pineal cyst for which I am symptomatic. I have awful pressure headaches (like a rubber band around my head) that range in intensity pretty much daily. And the headache originates just about anywhere and spreads throughout my facial area, jawline, top and back of head. It just begins to throb. I am sound sensitive as well as particularly sensitive to certain smells, though not really light sensitive. I can sometimes feel fullness in my ears (like being on a plane) with ringing in ears; nausea, vertigo, blurry vision, and either overwhelming fatigue or inability to rest or sleep. I could also swear there is some facial swelling or “puffy face”, but that is harder to say with certainty. My symptoms come and go, but there is always at least a dull ache, at the least which can always be triggered to more and usually is throughout the course of a day. I know in past posts mention has been made of several top neurosurgeons willing to remove a pineal gland cyst who believe patients are symptomatic as a result of their presence. I have had every test done in the book, beyond the pineal gland cyst, I am a basically healthy woman in her early 40s. I guess I am seeking any thoughts on the best surgeons for pineal gland cyst removal in the least invasive way? I’ve met with several neurosurgeons locally (in the Midwest), Mayo Clinic, and all tell me “watch and wait.” I have another MRI scheduled in July. Symptoms are not “going away”, but always present and some days significantly worse. I’ve met with The Skull Base Institute and felt strong uncomfortable, and I have researched a few of the neurosurgeons mentioned on this site, but none of them do out-of-state telemedicine consultations anymore, you have to be physically present in office for the consult, which means significant travel. Is there one that perhaps is better than another as it applies to neuro-endoscopic approach to pineal gland cyst removal? Appreciate thoughts. Thank you.

There is a surgeon in the Midwest. I will get his info and reply back tomorrow when I get more time.

Dr. Michael E. Sughrue, is a good surgeon in Oklahoma. He does the less invasive keyhole approach. I think he will also read your MRI as well for you. Dr. Patel will as well and they will email you what they think.