Discussions By Condition: Brain conditions

arachnoid cyst

Posted In: Brain conditions 225 Replies
  • Posted By: spidercystman
  • March 27, 2007
  • 02:58 AM

Hi im 21 and a few months ago i was diagnosed with a arachnoid cyst in the posterior fossa messuring 3.1 x 3.3 cm. ive gone to three doctors who all say the same thing, that its not causing any promblems. so instead of removing it they have done repeative tests on me trying to figure out the cause of my problems. i have been put on 5 different drugs in the past 6 months with very little help. there wasnt much positive effects to the drugs. they have had my on pain relivers, muscle relaxers, blood pressure meds to try to relive the headaches, and two types of anti-depressants. i have done countless web searches and all i find in controversy among the medical feild. most doctors will say dont worry about it most people have "lived" with these things all their lives. but most of the research ive done shows common sympotoms and strange unexpalinable ones too. i fortunalty dont have seizures but i have all the other symptoms. it is really hard to explain to the doctors the way i feel and the things i have noticed over the past years concerning my own well being and mental health. my question is if this thing doesnt cause problems then why are so many people with arachnoid cyst complaining about these symptoms? why isnt it noticed? if this has been with me since life isnt shouldnt there be some kind of study concerning the behavior of the childhood instead of focusing on the what is happening right now? arnt there more people out there that have noticed this and why isnt anything being done about it?i would rather risk surgury then be pumped rull of pills that do **** for me. unless someone can prove me wrong about this. thank you for your time who ever reads this please reply if you have any comment or questions.

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  • Im 29, was diagnosed with an "11x17mm posterior fossa arachnoid cyst that is causing scalloping to the iner table" I dont have siezures but i have passed out unexplicably a few times, my eyesight is going to crap, I have headaches, troble focusing, and i lok almost the exact same as i did in high school, i feel like i am still 17 both physichally and emotionly. I was told by doctors and the mother of a son whose A.C. was bigger in size, and she said he was fine, NO ONE believes that I should be having problems and that something else must be the cause. How can someone else tell me what I am feeling or going thru? especially since there is so little information or case studies, i was told 99.9% of the people dont have symptoms (but is that because doctors dont believe us?) but even so what about the.1% is it so hard to believe that I am in this elite club, id rather not be. Im sorry I cant help you but your not alone. i want mine outta there to, you'd think if i practically begged for neurosurgery that i would be taken more serious, rational people wouldn't want brain surgery right?
    Anonymous 42,789 Replies Flag this Response
  • hey thanks for the reply. i cant believe your cyst is that big wow mine looks tiny compared to yours. my symptoms have been getting worse. the doc's think i have migranes and depression so they put me on zolof. it has helped with the pain but i still feel like ive been getting worse each day. my eye sight also has gone to ****. cant see anything well with my right eye. i feel so confused and tired most days. thier are days were i feel like passing out just because i cant stay focused and my body feels so weak. ive started coughing real bad and threw up a little for the first time. all my doc's and my girlfriend think i should just forget about the cyst. they say its not helping any. so thats what ive kinda have done. everyone think im getting better. but i jsut feel worse. in reality i dont feel much at all. its quite sad. not being able to see smell hear or feel whats around you. the doctors call this living. i am living in a sense but why dont i feel alive my family dosent offer much support either. thanks for replying thier arnt many people i have to talk to and im sure you feel somewhat the same.
    spidercystman 19 Replies Flag this Response
  • It is true that an arachnoid cyst is a "normal" thing for alot of people. My 9 yr old daughter was diagnosed with one 2 months ago. The doctors told us that unless it fills with more fluid and causes problems that they would just do an MRI once a year and monitor it for changes. If it does end up causing problems, they will not do brain surgery, they will just go in through a "burr hole" and drain the cyst. This can be done at the bedside, not in the operating room. Hope this helps!!
    Anonymous 42,789 Replies Flag this Response
  • thank you for the reply. the problem im having though is trying to convice the doctors that im having syptoms. im telling them what is going in on but since none of thier tests are showing a problem. this is a big probelm for people with cyst. i didnt start to notice that i was having problems untill 11th grade and even then i didnt know what was going on. my syptoms have gotten worse and im not getting any better. the problem is that these doctors only see me and one point in time and if they could veiw me through my life and through the day they would notice that i am not ok. it is a good thing they are draining it for your daughter. they seem to be willing to do it and younger ages. you are very lucky to have found it so young. the problem have seen with draining cyst is they might reoccur will migh stir up problems. it is really hard for me to describe my problems because they happen in such a long range and they are constent so i adapt to them but it still dosent make it easy to live. i do wish you luck with your daughter.
    spidercystman 19 Replies Flag this Response
  • Hi, hang in there your not alone. Your story is alot like mine. I was knocked out and brought to mt sinai hospital. They told me i had a concussion but through a cat scan and mri found a Arachnoid cyst. it's the size of a quarter.3cm I have alot of **s kicking headaches, weak, fatigue, sleep alot had so many tests. get one mri every year since the accident 1998. I listen to all the bull**** the doctors tell me but i know im just not right. They say mri shows no clear pressure on the brain so leave it alone. They think i'm some kind of hypo. i really do have so many symtoms. I take all the meds they give me. i have so much pressure on my brain at times i just can't function. bad neck and back pain. i hate it i'm a pill popper and i hate it so so much. My eyes are losing sight fast. I sometimes think maybe it's age or this dam cyst. I think you would agree anyone being told they have this cyst in their brain would be concerned. I live a life around pain in my head. i get up in pain I work in pain and many nights finish in pain. the nights I don't have head pain is because i took so much pills(crap) I know i'm killing my other organs especially my liver. I miss family functions affairs. it's so hard to function my life is incapacitated with crazy symtoms that my docter thinks i'm a nut case and complainer. Holy **** do i need a new doctor or what. hey hang tight just stop by to let ya know your not alone . make the best of it thats what I'm trying to do. take care.
    Anonymous 42,789 Replies Flag this Response
  • hey thanks for the support. i dont know if you've ever been there but try arachnoidcyst.net. lots of support there. i dont know how you did it for almost ten years. imseriously debating walking in to my doctors office and telling him to take it out regarless. i go to school in a couple of months and its so hard for me last couple of semesters. in middle and high school i was a almost straight A student with my occasional B or C my grade have slowly been declining and im actually paying attention more and doing more studying since i was in middle school. in my favorite subject i got a D in chemistry. whats with that come on! seriously what do i have to do to make them belive me. the scary part is that it could get to a point where i might suffer from permanent nerve damage. i would like to catch it before then. i went to a theme part this past week. i used to love roller coasters the sensation you get from them. nothing, i felt nothing and whats even worse is i totally blacked out on one of the rides just i a drop. latley my arms will go numb if i elevate them past my shoulders. doctors thought i had carpaltunnel sydrome or something. past that test with flying colors too. my girlfriend will even say it seems like im getting better. while in my head i cant even plan past the hour. i dont even get tired really anymore. it takes forever to fall asleep. and my eyes have lost almost all there vision in my right eye and my left is following its brother even quicker. i work as a auto detailer i was really good but now i just suck at it making all kinds of mistakes. tell me someone what is wrong with me i have so many symptoms and looked at all the options and i pass every test and if its all in my head then why havnt i got any better these past couple of months where i have completely dont even think about the cyst. i still try to mentally keep track of my syptoms that i do daily. WHAT IS WRONG WITH US IF THEY CANT FIND ANYTHING WRONG AND WE ALL HAVE SIMILARS SYPTOMS (depending on location) i swear if i could i would become a doctor and figure this one out. im tired of hearing the same thing from all the doctors and then hearing the same thing from all of us with syptoms. my doctors just joke with me. one had the nerve to say if he thinks real hard hes like me with my vision. and they only tell us about the ones they have done surgery one and havnt noticed an improvement but they are always the ones who dont have any real problems except maybe an occasional headache and just want the thing they found out of there head. my doctor did tell me of two people out of the 6 that hes done that did notice improvments. all of us should get together and go to one doctor or something and anoy the crap out of them untill they do something. i think the biggest problem is the lack of communications within the medical field.thank you agian for whoever reads this sorry i wrote alot this time just caught me at a very writing mood. like always any respnses are always appretiated any at all so just write me if you want to. ill take what you say into consideration. have a good day yall
    spidercystman 19 Replies Flag this Response
  • hi there i have a one year old son that has an arachnoid cyst his was found at 5 months old and only found because his head was growing too big so his doctor did an mri and it was 11cm it covered the whole left side of his brain and his whole brain was squashed in the right side of his head so with in 2 weeks he was in surgery they drained it and then the fluid started laying on his brain so 2 weeks after that they had to place a shunt then 2 weeks after the shunt surgery he started taking seizures the shunt froze up shortly after that and he had another surgery 2 months ago to fix that now they found a blood vessel compressing his chest that we aren't sure yet if they have to do surgery for that and it all started with the cyst yet they say the seizures arent from the cyst they say the cyst was actually keeping him from having the seizures and when it shrunk from the surgery it exposed the spot the seizures are comming from the doctor told us that arachnoid cysts are fairly common but not alot is known about them because they are found accidently and some people live their whole lives not even knowing they have it well anyway sorry this is so long just thought i would share my experience and let you know you are not alone good luck and i hope you can get your doctors to listen to you
    Anonymous 42,789 Replies Flag this Response
  • Hey thanks for your support. im really sorry to hear about your son. hopefully he may grow out of that as he gets older and his brain is still growing. I dont know why but they dont ask as many questions when a child has a cyst. well i wish you the best and all the luck.
    spidercystman 19 Replies Flag this Response
  • Just diagnosed by mri, I am 38 yrs old and female. I went to dr cuz of the annoying numness on right side and other symptoms, we thought jsut a pinched nerve, but w/in 3 days I was getting mri and got results back next day. see the nuerosurgeon at the end of mnth, so now what are my steps? I have been reading all of the posts and They don't do anything? I have to live w/ not being able to walk or talk or see well. These symptoms are getting worse and very annoying.. I am an active person and this is shutting me down.. uughhhhLost at what to do or think>>>>>
    Anonymous 42,789 Replies Flag this Response
  • i am so sorry to here that news. i too just recently found out back in december. i wish i could help you more. i wish i could tell you a doctor that might help but i really cant. you can check out www.arachnoidcyst.net but please becarful of what you tell you doctor about that website. THERE is something that can be done they have three options. They can shunt it which i dont suggest because they often fail, they can fenstrate it which is a pretty minor precedure where they go in with a needle and camera and poke a whole and let it drain but they have a chance of reaccurance, or they can do surgery where they actually cut a hole out of a section of the membrane which is probally the best but its the most invasive which is why they probally wont do it unless they have a reason. Most people who i have talked to feel 100% or better then they ever felt a couple months after the surgery. though they have had it reform and the symptoms then come back which they have the trouble of trying to get it popped again. so dont give up hope there are only people like us trying to figure out what to do. im to am having trouble with numbness, vision loss and other things like head pains( i refuse to call them headaches anymore because i know what they feel like and this is nothing like that) Ive heard of the skull base institute doing precedures for people suffering like us but i do not have the recsourses to persuse that option. be very careful with the doctors, i know its hard but try to explain exactly how you feel. my problem is the doctors wont listen to how i feel. they like to look at there tests and tell me whats not wrong. be very careful how you say things too. i wish there was a quick answer and ive tried to approach it many different ways. Most doctors dont want to hear what you have to say and what you think. the problem is none of their answers are right either. they sent me to get an eeg, erg, a nerve conductive test(kinda fun reminds me when i use to play with batteries) and a mri of my head and neck. the doctors just kept perscribing me things and telling me what to think. Also make sure your family understands what your going through. my keeps thinking that i think about it too much and its changed my life like that. no no wrong. i keep getting worse, i was like you very active and now i dont know what to say anymore. ive been told by friends and family to just forget it and move on. the only prob is you cant forget something that reminds you daily that you have it. sorry im writing so much but this is how i am able to exprss myself if you were to talk to me you would probally be like "what is this kid talking about" again im sorry i wish i could help if i was a doctor i would try. the problem ive had is that the doc i worked with has had 4 of these patients and 3 of them didnt get better and they were only complaining about headaches. He joked and chuckled about me and didnt really take me serious. he was a good doc but it *****d me off what did he think that i lliked his german charm or something or maybe i liked to give money to doctors who dont have answershttp://forums.wrongdiagnosis.com/images/icons/icon10.gif. I wish you well and if you have any questions feel free to ask. and agian if ANYONE want to respond feel free. I WOULD LOVE TO HEAR ANYTHING FROM AN ACTUAL DOCTOR AND I WOULD LOVE TO DISCUSS IT WITH YOU. no bad mouthing i promise not an argument but a debate. if i could only get one doctor on my side i would be happy. well have a good night every one. sorry agian i wrote so much just got caught in one of those moods
    spidercystman 19 Replies Flag this Response
  • I hat to say it, but i am glad that I am not alone. I have seen Neurosurgeons who specalize in hind brain surgery and they won't touch my rather large posterior fossa arachnoid cyst. I am a Neurosurgical Sales Rep with a large territory, so I know quite a few of these guys and have been tring to convince one to take an interest in me. Some day, maybe a Neurosurgeon will suffer from the same and finally take an interst in us. Symptoms: Severe ADD, Very Abnormal Sleep Study (extremely fragmented sleep, EEG pattern indicating fibromyalgia), Insomnia, memory loss, sometimes slurred speech, forget simple words while talking and labor to recall what they are, loud ringing in the ears (tinnitus), progressive and uncorrectable vision loss, difficulty reading but not dyslexic, difficulty with visual tasks, impulsive or blunted emotional responses, 3+ hypereflexive in the LE, hypo or 0 reflexes in the UE, feeling constantly tense (cannot feel relaxed), cannot stay in one place/job instability. . . I do have normal gait, a recent IQ of 125 (disproportionably high on innate intelligence), I have been extensively tested psychologically over the years and have no psychological conditions. I am very tired in the day, so I am on Provigil (I fall asleep while driving). I take 300 mg Serequil and 2 mg clonazepam every night to sleep. No other sleeping medication or combination has an effect on me and I’ve been on them all. I don't like to be touched, not even by my wife. My body seems to go into spasms and I cannot breath when she does. The doctors at Aurora in Milwaukee say that my posterior fossa cyst is common and insignificant, but everything I’ve researched indicates that this cyst’s location is rare, so it’s list of potential symptom manifestation would also not be readily known. I would do anything to fix this problem. I have a Masters in Physical Therapy and Exercise Physiology, but cannot function to do the job, so here I am bouncing around in Sales jobs. I graduated Summa **m Lauda in PT school and #1 in a Highschool class of 400, but I can barely function in life. Here is a scarey study: http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=10562848&dopt=Abstract This may explain my fluctuations in symptoms. What if it get's too large? Could it kill? The image I'm trying to attach is too large, I'll do it from another computer. Sorry, I can also be quite verbos. I will try and send a a university neurosurgeon to this board. Scott
    Anonymous 42,789 Replies Flag this Response
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  • I put the picture in an RAR file (WinRar), hope it works. If that does not work, try downloading it at:http://rapidshare.com/files/42165751/Scotts_Brain_2.JPG.htmlScott
    Anonymous 42,789 Replies Flag this Response
  • Wow is sadly good to hear from you. you put all my syptoms into words like i have been trying to. you sound exactly like me when im explaining my syptoms. i dont have a big problem being touched but then again i dont have much of a sense of feeling. i was reading your post and it was a little erie how closely you sound. My biggest fear is living my entire life like this. you know what my doctor told me, his mother has a cyst in her forebrain and he just laughed at her. but i think that a posterior fossa cyst would be mor dangerous and problematic then most others. there is a lot of vital sensory nerves going through there that if srewed with would exlpain our odd syptoms. you do sound like a pretty inttelegent guy. i wish we could change the minds of those doctors. i was hoping to get an open minded nuerologist but he was the worst of all of the doctors i went to. that is what i feel is even more sad then our actual problem is that these are suppose to be the brightest minds and should be open to new ideas. they are suppose to listen to use and try to help us. why do i feel so ignored. as soon as they go through thier options they ignore us. i just wish i could sit with a doctor and have him listen to meand all ive been through and say well then i guess we have only one other reason why you should be having these problems. Im sorry medical field but im starting to have serious doubts about the intellegence of our medical field. im glad they spent years of schooling to just follow the text book. But i guess thats why they act like they are smarter than use even though ive done more research then they. well good luck to you. i just think thier is more that we could do if only as a whole community. well im up for any ideas and im tired of people telling me to be open minded because i cant take going to another specialist whose just going to run more test and take another guess at what i have ( which isnt related to the cyst) all and all it doesnt really work and i just wasted more money. good nght
    spidercystman 19 Replies Flag this Response
  • wow you sound word for word what my syptoms are. except for the touching issue. i used to dislike others touch but ive never had a problem with what your having. i wish there was more that we could to as a community. my doctor actually laughed at his mother when she was diagnosed with a forebrain arachnoid cyst. they love there text book answers and the fact that they have 8 yrs of schooling. but i think us posterior fossa's have more problems because there is so many vital nerves back there. i really dont want to go to any more specialist because they all fine something else that could be causing my problems but no one ever fixes them. i wish they would be more open minded and see that nothing else is fixing our problem. i am becoming disappointed with the medical feild. i think somehting needs to changed in thier way of thinking. just because they dont have a test to see our problem doesnt mean we dont have one. and that is there biggest problem. well i too am sadely glad that thier are more of us trying to fix this. i wish you well. we are all fighting this individual fight if only there was a way to fight it together. i hope they can realize this sooner than later. my biggest fear is living the rest of my life like this knowing im not getting better and maybe getting worse and im always remebering what thing use to feel like. Please doctors wont you listen to use and realize that there is a problem and we arnt just complaining .
    spidercystman 19 Replies Flag this Response
  • well, i posted eariler I am the 38 yr old woman diagnosed w/ arch. cyst..Well, anyway jsut got back for nuerosurgeon and low and behold the answers I got from him about symptoms and MRI showing the cysts was.......... yep you all guessed it " There is no way the cyst is causing your problems, you have had it since birth,"(, ummm then why now?)He is sending me to a nuerologists now, says the sym. could be caused by complex migraines.... hmmmm.. That's why the symptoms last continuasly? Not by what I have read..... uughhhh I have just started with all this and am already fed up... The Dr said I have been practicing over 30 yrs and have seen many of these and they don't cause problems.. It's something else. Well, I guess all of us just love to go from one specialist to another to waste our hard earned pay to help those Dr to send their kids to the top schools and build thier huge houses...grrrrrrrr.. It's just all in our head.....lol.....literally and I wish someone will find a treatment or heck even a cure. Sorry I guess I did some venting...Fed up Chris
    Anonymous 42,789 Replies Flag this Response
  • sorry to hear that. i was sent for a neurologist like that too. migranes arnt continous but they dont understand that it literally does not go away. im so sorry your going through this and im really sorry to say that i dont know what to say. i wish i could talk to a doctor like a normal person so i could argue with them but they think they already know the answer so there is no sense trying to argue. just stop seeing those doctors and find a new one i guess. its hard because it takes so lond to get an appointment. before you know it something that you thought would only have taken a week or month is going to take a year or two. the best you can probally do is try to help your family and friends understand what your going through and that you need support more than someone trying to firgure the answer. you know your body and know something is wrong. good luck. any doctor that wishes to reply please do so. good luck to everyone
    spidercystman 19 Replies Flag this Response
  • Never ending story,I had a cat scan then mri for headaches found Arachnoid cyst 5.5cmsx1.2cms rear posteria fosso they say it cant cause my symptoms. Headaches,nausia,dizziness,three months later still sick and broke from the fees'Any clues, iwantit drained
    Anonymous 42,789 Replies Flag this Response
  • wow sorry to hear that. i wish i knew im going to see my regular doctor and see if i can at least convince him. my other doctors wont talk to me. im trying to get a doctor on here to talk to me to tell me what the ***l is going on? and why is the medical field ignoring our problems? i say we all write letters to a major news company like abc, nbc, or wbal and see if they will do a story on us. i think we just need to get our problem out there and get some people to listen to us. but ill let you all know if i find something usefull. in the mean time go to www.arachnoidcyst.net
    spidercystman 19 Replies Flag this Response
  • im sorry to hear that. i hate to say it but i dont know what to do eaither all i want is it to be drained too. but the doctors well talk to me anymore. i guess i *****d them off. oh well. i think if we all wrote letters to a major news company that mabey we could get some support for us. i still trying to get a doctor on here to talk to me and tell me whats up? or at least why we arnt being taken seriously. but i wish you luck and ill let you know if i find anything. in the mean time got to www.arachnoidcyst.net
    spidercystman 19 Replies Flag this Response
  • Hi allI have been reading all these messages since I discovered this site recently, and I can't believe there are so many people out there who have an Arachnoid Cyst, have all the horrible symptoms, and have the proof that the cyst is there and, in some cases, quite big...and no Neurosurgeon will take you seriously and operate??!!I had my Arachnoid Cyst operated on a few years ago. When my cyst was finally discovered with an MRI, My Neurosurgeon had me in hospital for the operation within 2 months. He took all my symptoms seriously, and especially so, once he saw the MRI results! My cyst was in the posterior fossa, and my Neurosurgeon had no hesitation in operating.I feel for you all who have a cyst and all the symptoms, because I've been there, and it's not nice! I hope that you can find a Neuro to take you seriously eventually, because everyone deserves the right treatment! ~Jaime~
    Jaime_Aus 25 Replies Flag this Response
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