Discussions By Condition: Nerve conditions

Mega-cisterna magna

Posted In: Nerve conditions 33 Replies
  • Posted By: Anonymous
  • September 13, 2006
  • 07:44 PM

For about half a year I have strange symptoms, especially at night:
ringing in the ears ,Headache, cheeckache -very strong, problems with hearing. The MRI shows mega-cisterna magna.
Has anybody similar symptoms? What can it be?
I'd like to add, that I am only 30 years old.

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33 Replies:

  • My daughter was diagnosed with a mega-cisterna magna at the age of 12. She is now 13 and has eye pain to the sides of her eyes and headache. It has changed her quality of life.
    Anonymous 42,789 Replies
    • December 20, 2006
    • 07:25 PM
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  • For about half a year I have strange symptoms, especially at night:ringing in the ears ,Headache, cheeckache -very strong, problems with hearing. The MRI shows mega-cisterna magna. Has anybody similar symptoms? What can it be?I'd like to add, that I am only 30 years old.Hi there,My 12 year old son has had very bad head pain especially in his facial bones which has also been worse at night. This problem began over 3 months ago and seems to be getting progressively worse. His symptoms also include a very stiff neck, pressure in his ears and seems to be very susceptable to viruses (with all his pain symptoms increasing when he has a cold). We have achieved no relief from his pain with either paracetamol, Ibuprofen, Codine or Amitriptyline. He has has X-Rays, CT's a Lumbar Puncture and an MRI with the only anomoly being a Mega-cisterna magna. The neuro surgeon assures us that this has no bearing on his symptoms but we are not totally convinced. They have no answers for us except Chronic Fatigue Syndrome and pain management. Have you found any answers? Have your symtoms improved?
    Anonymous 42,789 Replies Flag this Response
  • Hi there,My 12 year old son has had very bad head pain especially in his facial bones which has also been worse at night. This problem began over 3 months ago and seems to be getting progressively worse. His symptoms also include a very stiff neck, pressure in his ears and seems to be very susceptable to viruses (with all his pain symptoms increasing when he has a cold). We have achieved no relief from his pain with either paracetamol, Ibuprofen, Codine or Amitriptyline. He has has X-Rays, CT's a Lumbar Puncture and an MRI with the only anomoly being a Mega-cisterna magna. The neuro surgeon assures us that this has no bearing on his symptoms but we are not totally convinced. They have no answers for us except Chronic Fatigue Syndrome and pain management. Have you found any answers? Have your symtoms improved?OH MY GOSH! this is me. I have a very large cyst - at its widest it is 7cm. I have bad eye pain / headaches / facial pain. My CSF pressure is slightly elevated and I had some relief from the drainage done during the lumbar puncture last week.I am glad to hear someone else has these same headaches and mega cisterna magna. I was losing hope with the doctors. I was beginning to doubt that my symptoms merited treatment.That is the tough thing. I feel like I shouldn't complain about headaches. They are horrible - but will the doctors take me seriously? I've been dismissed for so many years. Now that I have actual neurological findings from the recent CT scans, MRI, spinal tap... I have evidence - but they always have me doubting myself. The last visit to the neurologist ended with the doc telling me that the cyst should not be causing my headaches. It is huge -- how could it not cause problems?! It is kind of shaped like a football. It is about 7cm x 5cm x 5 cm. Big, yes? :eek::(
    lychee 2 Replies Flag this Response
  • Dear Lychee,You poor thing! I can't believe the doctors don't think a cyst that size is at the root of your problem! I would definately go for a second or even third opinion. My son (the 12 year old boy you replied to) is out of hospital again. The whole nurological team dissmissed his case and said he should go home and wait to get better!?!?! His symptoms are still getting worse. He is now getting intermittant stabbing pains in various loctions throughout his face, eyes and skull. He is constantly nausious and they checked him out of the hospital with a small supply of Ondansetron to help - I don't know what I will do when it runs out. He is also having alot of trouble with his stomache where he ends up on the floor with acute stabbing pains that fortunaley don't last very long. He can't go to sleep very easily at night due to the pain. I really don't think the doctors are taking it very seriously - they can't find anything so they don't think he should be in any pain. They keep telling me to just get him back into a routine (he has missed months of school) and he should get better??? When I try to get him to do any mental work he ends up in tears begging me to stop because his head hurts so much. It has grossly changed the quality of his life and with no hope in sight he sometimes says he wishes he were dead. I have no idea what to do now.Just a quick couple of questions, you seemed to indicate you have had this problem for some time. When did they first find the cyst? Did you have any earlier scans that revealled anything or were they clear except for the MC magna? How old are you? Have you been susceptible to colds and flues also? Have you had a stiff/sore neck? What are you going to do now? Do they want to remove the cycst? I am persuing another opion at the moment and will let you know if I come up with anything.Sorry to hear you are going through similar problem but is nice to see we arn't alone in our frustrations with the medical system. Wishing you the best of luck with your condition. Hang in there.
    Anonymous 42,789 Replies Flag this Response
  • Just a quick couple of questions, you seemed to indicate you have had this problem for some time. When did they first find the cyst? Did you have any earlier scans that revealled anything or were they clear except for the MC magna? How old are you? Have you been susceptible to colds and flues also? Have you had a stiff/sore neck? What are you going to do now? Do they want to remove the cyst? I am persuing another opion at the moment and will let you know if I come up with anything.Thanks!AGE: * First... I am 30 years old.Cyst History: * About 6 years ago, I had a CT scan for my 'sinus headaches'. I cannot remember if they mentioned a cyst. It was focused on my sinuses and the scan was only reviewed by the radiologist and the ENT doc. Here's the rub - it was film, not digital. Apparently, they have thrown out the film (adults only - they save children's film). It is thrown out after 5 years. The current neuro doc is trying to get a written report, at the very least. I guess things are up in the air until he gets back from china and sees the written report (if it exists). I really wish they still had the film!It was only a few weeks ago that I had another CT scan of my head and the cyst was reported. It may have been there before, but, to me, it feels it has grown in recent yearsCold / flu history: * I am prone to congestion and sinus headaches. I get a lot of colds, and they tend to be head colds -- rarely do they make it to my chest.Neck...: * I almost always have a stiff neck! Before I knew about the cyst - I noticed it was my head that hurt - above the top of my neck. It is at and below the inion. Then my face hurts. That is my basic headache. At/above the neck - then face...Future: * ugh... I really just want to ignore it all and not push it with the doctors. I feel like a druggie. Like, I'd rather just take pain medication to manage through my daily life, and not face the pain. It is a good thing I can't write my own prescriptions! Right now, I guess I should commit to calling the doctor's office next week. I really hate this. I know I have to push through. I guess I should also start to pursue a second opinion. You are right. As far as I know, they don't intend to remove the cyst. If anything, they will be removing more spinal fluid and taking more scans to measure. I really hope your son gets help. I am 30 and in a phd program. I have had a lot of good years, and if my career gets sidelined - I will be ok. I have backup plans which accommodate lowered brain power and pain. I hope I don't have to drop out of school - but right now - I don't know how I will make it through the program. Your poor son. Headaches can really make life miserable, as we all know.
    lychee 2 Replies Flag this Response
  • Just last week, after MRI, found out I have a mega cisterna magna. I have debilitating symptoms for about 5-7 years (I cannot work) with no proper/accurate diagnosis. I've been dx with depression (not), IBS, hypoglycemia, orthostatic hypotension, postprandial hypotension. My symptoms are excessive dizziness, fatigue (nap like in a coma for 3-4 hrs a day), sleep paralysis, seeing stars, fainting and near fainting, sweating, tingling around mouth, numb/tingling arms, cold hands/feet, low blood pressure, low body temp, unstable balance.My neuro has mentioned narcolepsy, but I just think that narcolepsy wouldn't cause the dizziness and fainting. I could be wrong.Are these symptoms similar to anyone else out there with a mega cisterna magna? What about Chiari Malformation?:confused:
    SunnyStreets 4 Replies
    • November 15, 2007
    • 11:50 AM
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  • My father has a Mega Cisterna Magna in his posterior fossa. He is 84 years old so his symptoms could be a number of things so the doctors do not think the MCM is problematic at all. He has fatigue, cannot lift his feet when he walks, gets dizzy, very poor balance and very serious bouts of weakness where he cannot get out of bed. He has all the symptoms of Hydrocephalus/NPH but the brain scan does not indicate that. I would like to think there is an easy answer to his problems but according to the doctors anyway, the Mega Cisterna Magna is not it.
    Anonymous 42,789 Replies
    • November 26, 2007
    • 05:48 PM
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  • Bob7: Thanks for your reply. It is frustrating because I am 40 and have been dealing with these symptoms since my early 30s; therefore, I am hard pressed to believe it is "old age," which I would imagine your dad has heard. Reading the literature is somewhat interesting because some medical professionals are giving credit to the fact that some elderly patients who have been dx with dementia/Alzheimers actually have another condition which goes hand in hand with mega cisterna magna. MCM is not usually considered to be the problem as you stated; it is just usually a sign that there may be some other condition lurking about-the true problem. I am skeptical that having a MCM would not cause the neurologic symtoms both your dad and I are experiencing. (BTW, my MCM is in the same place as your dad's...interesting.) Please let me know if he does end up getting a dx, and I will do the same. I see my neuro on Thurs. after a cisternography MRI and sleep study.
    SunnyStreets 4 Replies
    • November 27, 2007
    • 01:04 PM
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  • My daughter is 21 and has been diagnosed with Pseudotumor Cerebri for the past 4 years - this is a diagnosis that has be questioned MANY times. She has a Mega Cisterna Magna that I am told is "huge". Rachel had an LP shunt placed 2 years ago and has since had 1 revision. The shunt is a miracle - when it is working properly. Her symptoms dissapear and she is functional and off all of the narcotics when it works. Right now it is not working. The tube runs from her spine into the abdominal cavity and the floating tube keeps getting lodged, which partially blocks the flow of the CSF.She has terrible headaches, terrible neck pain, tinitus, numbness, sleep paralisys, visual problems, pseudo-seizures to name just a few of her more severe symptoms. Her CSF pressure is elevated, but not to the level of most PC patients. She has slight signs of swelling in the optic nerve but not full blown Papilladema (also a sign of PC). Finally a new surgeon is considering the possiblity of the MCM being the problem and considering a cisternal shunt. Does this have any similarities with anyone here?
    dmoxam 4 Replies
    • November 29, 2007
    • 02:22 PM
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  • Just as a follow up to my last post. Rachel had a cisternal shunt placed in the MCM on December 13 and it doing VERY well. It appears that there may be an anachroid cyst in the MCM (although not verified) and that the CSF was flowing into the MCM faster than it was flowing out. This was causing a build up of pressure in the MCM. It appears that this may have been her problem all along. Debbie
    dmoxam 4 Replies
    • January 8, 2008
    • 06:19 PM
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  • My grandfather, mother, brother and 2 cousins all have mega cisterna magna. All were diagnosed incidentally on other xray studies. They are all fine and have no symptoms. It is my understanding this is a normal variant.
    Anonymous 42,789 Replies Flag this Response
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  • I have been researching and didn't find anything that states MCM is not normal. Apparently, doctors think the same way and no studies have been done to prove MCM affects patients. I am actually confused because I am in the same situation. I have been looking for answers for a long time now and have found nothing. I know some may not understand (even doctors) that the symptoms are real and these affect us. I can only express my frustration. More and more I'm not hoping for a cure but is looking forward to an answer that it is indeed some sort of condition. I feel upset whenever doctors assume it's psychological or just being caused by stress. I have been treated for depression, anxiety and the likes. It helped that I'm sleeping better..but it did not cure the cause..and now I'm being diagnosed again. I don't even know what we are up against here. I just try to live my life like normal people do. But I know I can't keep pretending I don't want to know what's wrong with me. I hope you can share what you have found out coz' I am really interested in getting answers. It took me forever to finally get to this forum.thanks!
    patient101 2 Replies
    • November 18, 2008
    • 00:41 PM
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  • I am a 65 year old male, who, too, was just diagnosed with MCM as the result of an MRI for an ear condition (hearing Loss, ringing in the ears, plugged ears, & lower head/neck pains). Based upon what I have read, so far, I haven't seen how this mess is medical treated; any input.Rich G.
    Anonymous 42,789 Replies
    • December 15, 2008
    • 06:14 PM
    • 0
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  • I am barely 30 and still undergoing diagnosis. The doctors can't give me a final diagnosis yet. They observed hypereflexia and fasciculation. They've been running tests and I think I'd be getting another brain MRI (my MRI was taken more than six months back) to get latest results. As far as I know, MCM is asymptomatic. It is congenital, we are born with it (so they say). Based on what I read here on the thread, I can say it most probably is somewhat tell tale sign there is something wrong. Although it can be said that only few people with MCM exhibit symptoms. But of course, that's just me. It can be nothing (I have no medical background whatsoever so I'm not in a position to conclude or speculate anything), really. For now, my way of life has changed drastically. There are things I can't do anymore. It makes me sad that I don't know what I'm up against.
    patient101 2 Replies
    • December 17, 2008
    • 01:10 AM
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  • OH MY GOSH! this is me. I have a very large cyst - at its widest it is 7cm. I have bad eye pain / headaches / facial pain. My CSF pressure is slightly elevated and I had some relief from the drainage done during the lumbar puncture last week.I am glad to hear someone else has these same headaches and mega cisterna magna. I was losing hope with the doctors. I was beginning to doubt that my symptoms merited treatment.That is the tough thing. I feel like I shouldn't complain about headaches. They are horrible - but will the doctors take me seriously? I've been dismissed for so many years. Now that I have actual neurological findings from the recent CT scans, MRI, spinal tap... I have evidence - but they always have me doubting myself. The last visit to the neurologist ended with the doc telling me that the cyst should not be causing my headaches. It is huge -- how could it not cause problems?! It is kind of shaped like a football. It is about 7cm x 5cm x 5 cm. Big, yes? :eek::( my son who is 12 has the same symptoms described above.we are currently at MD Anderson in Houston ,Tx. We have been very pleased so far in his care here. I would recomend contacting them to take on your case if the cyst is enlarged they can place a shunt to relieve pressure in the brain cavity which will relieve the headaches,dizziness,and all of your other symptoms . MD Anderson has a website www.mdanderson.com that you can send your MRI, CT scans to and they will have the tumor board review it and they will contact you and set a couse of appointments for you .Also if you are on a tight budget you can request to stay at the Ronald McDonald house for $15 a day which is extreamly cheap ....considering youre in Houston . Hope my info has given you a bit of hope for your medical journey ahead ...we will keep you in our thoughts ..... a mother in crisis .....
    Anonymous 42,789 Replies Flag this Response
  • Hi, I'm a 33yo woman and was just told I have excess fluid in the cisterna magna, waiting on neurology appt to find out more. I had an MRI 2 days ago due to me having severe uncontrolled migraines and neuralgia's (stabbing pains) for the past 10yrs. I do experience the facial bone pain, eye pain, occasional visual discomfort and like dizziness and nausea, all I thought tied to migraines.I wonder how many of you might have had head trauma at some point? I found myself experiencing headaches daily that turned into migraines shortly after an accident that hurt my neck and a facial trauma accident.ThanksJaninesurfbabe28_auctions@yahoo.com
    Anonymous 42,789 Replies Flag this Response
  • For about half a year I have strange symptoms, especially at night:ringing in the ears ,Headache, cheeckache -very strong, problems with hearing. The MRI shows mega-cisterna magna. Has anybody similar symptoms? What can it be?I'd like to add, that I am only 30 years old.My son is 17 and was just diagnoised. He suffers from nasuea, very bad headaches and all the dr. wants to do is blame it on depression! We are in the process of getting him to Childerns Mercy in Missouri. It's hard watching a kid who has gone from being very active, hard worker to not wanting to get out of the chair because he feels like crap. I'd like to know who do people see for this disorder? Neurologists? Is this something that can be hereditary?
    Anonymous 42,789 Replies
    • October 22, 2009
    • 04:21 PM
    • 0
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  • My daughter had a shunt placed directly in the MCM almost 2 years ago now and she is doing amazingly well. She has almost finished University, holds down 3 volunteer positions and a part time job - 2 years ago she was in a wheelchair, on major daily doses of several narcotic pain meds and suffering from numerous seizures each day. This had been going on for 5 years and we had been all over Ontario (Canada) and to NYC seeking help but to no avail. They called her MCE a "normal abnormality" and didn't believe that it could be causing her troubles. They thought it was Intercrainial Hypertension (which they still believe may be part of the problem) and placed a shunt in her spine (lumbar shunt) only to have it fail and symptoms return approx. every 3 months. Finally we found a nuerosurgeon that did not believe that the MCM was in any way normal and he placed a shunt directly in the MCM. The next day my daughter was out of bed (staple in her head and all) and ready to take on the world. She hasn't stopped since :). There was actually a cyst in the MCM that would slowly fill up with CSF and the pressure would build. Now it is regulated by the shunt. We have been to ***l and back with this and trust me, we have been told many times that it was psychological. It was not - trust your own feelings and don't stop until you get someone who believes you!!! I don't mind answering questions about how we coped and my daughters symptoms and treatments and offereing encouragement if it would help any one out there. I am not a Dr. but I am a Mom who has made it through this terrible ordeal. Debbie
    dmoxam 4 Replies
    • October 23, 2009
    • 02:38 AM
    • 0
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  • My daughter had a shunt placed directly in the MCM almost 2 years ago now and she is doing amazingly well. She has almost finished University, holds down 3 volunteer positions and a part time job - 2 years ago she was in a wheelchair, on major daily doses of several narcotic pain meds and suffering from numerous seizures each day. This had been going on for 5 years and we had been all over Ontario (Canada) and to NYC seeking help but to no avail. They called her MCE a "normal abnormality" and didn't believe that it could be causing her troubles. They thought it was Intercrainial Hypertension (which they still believe may be part of the problem) and placed a shunt in her spine (lumbar shunt) only to have it fail and symptoms return approx. every 3 months. Finally we found a nuerosurgeon that did not believe that the MCM was in any way normal and he placed a shunt directly in the MCM. The next day my daughter was out of bed (staple in her head and all) and ready to take on the world. She hasn't stopped since :). There was actually a cyst in the MCM that would slowly fill up with CSF and the pressure would build. Now it is regulated by the shunt. We have been to ***l and back with this and trust me, we have been told many times that it was psychological. It was not - trust your own feelings and don't stop until you get someone who believes you!!! I don't mind answering questions about how we coped and my daughters symptoms and treatments and offereing encouragement if it would help any one out there. I am not a Dr. but I am a Mom who has made it through this terrible ordeal. Debbie
    dmoxam 4 Replies
    • October 23, 2009
    • 02:41 AM
    • 0
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  • Dear Janine,I have an exactly the same situation as what you said on wrongdiagnosis.com.Please tolerate my poor English as i’m not a English specking.Yes I have a severe uncontrolled migraines and neuralgia’s (stabbing pains) for the past 10yrs.It changed my life totally. It come along with the problems of ringing in the ears ,cheeckache..eye pain..etc. exactly of what people said hereIt is the same as you I hurt my neck and the back of the head ten years ago critically. I have been never hurt like that I almost pain to dead. I collapsed soon and the pain cause me wake up. .it is so intolerable and most importantly, at that time my symptoms, like ringing form my ears and the migraine , are serious than now 100 times. i was pain to collapse again, and i don't how long dose it take when i traveled in the ***l. the next time i wake up the syptoms reduce but not disappear untill now.it remains all the time.I, too , have very stiff neck, and all of my symptoms increasing when I have a cold.The MRI shows mega-cisterna magna.I don’t not what to do. I then always think of committing suicide.The doctors in my country always said that “mega-cisterna magna” must be innate and this must not be related to my symptoms.MCM is so normal, unlike other cysts would cause any symptoms. They say many people have this but they all haven’t any problems.The doctors keep disappointing my and they assure my problem is mental problem.This is so unbelievable to me. I find a lot of research and I find my country are so many patient here who a dinosis with MCM have exactly the same syptoms of me.However, they are all have no solution to there problem forever and they need this pain untill they dead.it is so horrible. This is also the first time I visit the English website due to my poor English. I find it hard to improve my English and the only reason is that I know the western country have an advanced medical knowledge.thx for all of your attention
    shiumy 1 Replies
    • October 31, 2009
    • 09:23 AM
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