Are symptoms related to arachnoid cyst?

[bobona]

I was diagnozed with an arachnoid cyst in the right temporal lobe with dimensions of 2.9 x 1.3 x 1.6. Since the cyst was detected, I have been having weird symptoms: mild headaches almost every day (not on one particular side but kind of moving around), heavy-head feeling (like my bran is about to "shut down"), pressure in the ears (like the feeling when a plane is taking off), fatigue, slight numbness in both arms. Two neurologista have told me that the cyst is not causing the symptoms, so I should just monitor it from time to time (e.g., every 6 months or so). I really want to believe them, but it seems like too big a coincidence--I can't help but feel that the symptoms are somehow related to the arachnoid cyst (it is true that my symtoms worsen during my period). Does anyone have an experience with this type of cyst? How fast do they grow? What else could these symptoms be related to?

[friendlySloth]

Hi there, I saw a neurologist because of a weird symptom that I have suffered from for months:

I have a super irritating tingling sensation on my left temple. Only a very small area is affected, maybe as big as a fingertip or a pinhead. It is always the same spot.

I had an EEG done and an MRI. A neuro radiologist diagnosed a arachnoid cyst, more than 1 cm in size. He wrote that it is "clinically irrelevant". It is in the left temporal lobe, so not too far away from my tingling sensations it seems!

Yet my neuro does not think that the cyst could be the cause for my tingling, which is still very irritating. I have it almost all of the time, except shortly after waking up. It gives me slight relief when I am very busy doing something else, or when working out. But that is probably only because I am distracted.

Has anyone experienced something like this?
Any ideas what I could do about it? Thanks so much, and all the best to you all.

[EslamAAG]

Hi I have the same symptoms, I was experiencing tingling and numbness so I went to a neurologist.  They gave me an MRI and found the Arachnoid cyst, however they claim the same that it is to small to be causing me these symptoms.  That was this summer, over the past few months I have been experiencing even worse and extreme pain I can really explain, lethargy fatigue depression and worry.  The only time I get relief is the same when I first wake up and when I'm working out, especially legs day, I have concluded it's because most of the blood flow goes to the leg group muscles during those times.  So I can relate,  I am currently seeking Stem cell research opinions and evaluations also a 4 th and possibly 5 th Neurosurgeon s opinion.  Giostar has given me a very through treatment course of action and their Doctor believes it is related to the cyst and suggested to harvest my own stem cells using my immunity response to get rid of the cyst within 90 days, however it's very expensive and still technically experimental.  But they have had miraculous results. Was wondering if you have found treatment or relief?  None of the meds worked that the neurologist prescribed.

[Amber2790]

I have the exact same symptoms and was told the same thing. Mine is 2.3 by 2.8 by.2.0 in size. I constantly live with a migraine. Mine is on the front left temperlobe of my brain. I've noticed speech and memory issues. Dr keeps saying no surgery or anything is need. The pressure in my head is so bad all the time. My arms tingle and go numb all the time.

[Kknystrom77]

My seven year old son keeps having bouts of vomiting that is so bad he can barely catch his breath between dry heaving. After 3rd time rushed him to urgent care who called an ambulance thinking it was a ruptured appendix and they diagnosed him with mesenteric lymphadenitis. He is constantly running into things that are right in front of his face, his left leg hurts and is weak, he constantly says he sees auras around people, shooting stars, trails, and his left eye is constantly twitching. He is super sensitive to noises and light. He has had his adenoids out after 40 ear infections all in left ear. Recently he chokes on everything and says he can’t swallow past clavicle. He thinks he is having a heart attack which I think is heartburn. He has a headache daily and complains of tummy hurting daily. He is pale has lost weight and has dark circles under his eyes. I took him to ENT who I begged to investigate further who ordered a cat scan of neck. I never heard back but last week after being super sick again I went online and found his radiology report. It stated although not a brain scan he did see an arachnoid cyst on left middle fossa. I stayed up all night and called his doctor next day who ordered MRI. We got MRI saying he had a 4x4x3cm arachnoid cyst right behind his left eye and by his left ear. She thought these could be related to his symptoms and referred us to Loma Linda to see neurosurgeon. We went Friday only to be told it’s small, probably been there since birth and is not causing any of these symptoms and do not grow after age 5 and does not need to be looked at again. My son and myself were not excited about getting brain surgery but my son especially lost it after and tore my room apart saying the doctor did not believe him and no one will help him. It’s so sad that so many have the exact symptoms but doctors can’t grasp these more then likely are all caused by these damn cysts. I do believe he has had it since birth but also believe it must be growing to cause such extreme symptoms suddenly. We need to start a petition to get more research on symptoms for these so called small cysts that on a small 7 year old how can a cyst the size of a lemon be considered small.

[jacobsbrain]

well as you said the symptoms started from the moment of the cyst being found . So most likely the neurologist are right. If it would be the cyst you would have problems long time before it being found.... Im a 22 male that was struggling with a lot of symptoms for years and than the cyst was found . So from personal experience I think You think about it far to much. Unless you had the symptoms long before the diagnosis of the cyst.

[Gardner27]

I have very similar symptoms.I have been to multiple neurologist, neuro surgeons and have had every kind of test done to only get no answers. Makes me start to think I am crazy and loosing mind. I know how bad I feel, the pain is horrible and so is the fatigue. The nauseous is crippling. I miss several days of work every month but yet am told the cyst is small so let's repeat MRI in year. Really? How am I supposed to go on with daily living feeling like this. I just keep on searching for someone with answers.

[Finst385]

In December 2016 I wound up in A&E with stroke-like symptoms; numb and drooped face on the left, numb/heavy left arm, tingling fingers, vision problems (8th of my vision in my left eye was blind), I couldn't think straight and speaking was a problem. By the time I saw a consultant (7hrs later) my symptoms had subsided and I passed all the demeaning 'how many fingers am I holding up test'. This happened 3 times and everytime I was sent home. I finally got an MRI scan in mid January 2017. My symptoms have progressed to seizures, I have significant memory loss, my fine motor skills are very limited and my spelling, problem solving and ability to understand conversations or instructions is worsening rapidly. Not to mention my extreme tinnitus! 3 days ago, I received a letter stating a coincidental right temporal arachnoid cyst had been found when someone finally looked at my MRI  scan, but apparently, it's nothing to worry about and not connected to my symptoms. May I just add, the Neurologist who wrote this letter previously said to me he doesn't have a magic wand for when my symptoms get really bad again. With very little faith in this unprofessional, poor excuse of a Neurologist, I'm concerned that my symptoms are worsening at a very fast rate and there is nothing he can do to help me. Originally, he tried to tell me he thought it was 'functional' and I was making it up. I'm a dance, drama and vocal coach - I can no longer dance, remember lines or words to songs. This is effecting my work which in turn effects my life - but I just have to put up with it apparently???

[DJsilver]

You need to see a neurosurgeon, but good luck finding one who takes ACs seriously.

[Patby]

Hi,
Just this week I was diagnosed with an Arachnoid Cyst within the front lobe on the right side of my brain. The cyts is anatomic. Laying on the outside of brain causing pressure.  Throughout the years, I have had Constant headaches/migraines on and off with dizziness and sometimes fainting spells. The cyts itself isn't all that big about 1in long and .5in wide. My question is do any of you have learning/cognitive issues in how you retain, process, remember, recall of what you learned ? I am specially focused on memory, mine this past year has been seemingly slipping and I am having trouble recalling situation that I was just in or had conversation a day or two ago and can't seem to recall it. also, i am slightly dyslexic with recently diagnosed with ADHD.
My doctor said to do a CT scan to keep an eye of it but doesn't sound to worried about removing it. I am afraid, as I get older this will get bigger and cause more damage.  I want be proactive about this and have it removed. I live in NYC any suggestions into finding a good DR. Who would treat this problem ?
Thanks

[DJsilver]

My son has the exact same symptoms as you. They tend not to operate unless they see proof of it increasing in size.

[JenniPopp]

I have similar issues but haven't been to the Nueroligist for this issue yet. I found out I had an arachnoid cyst  in 2013. I didn't get much info other than I really need to look into it. I since have lost feeling in my right arm, bad headaches that make me throw up, my eye sight has gone down hill blurry vision at time , and to top it off now my right hand I have the shakes...

[Lglately]

...and my symptoms are gone!

[friendlySloth]

That's great! What kind of procedure was used to remove it?

[Lglately]

Don't listen to these doctors and neurologists who tell you that your cyst won't cause you problems. They very much cause problems! I went through 5 years of hell and doctors telling me it was unrelated. I got my AC removed in 2015 by Dr. Shahinian at the Skull Base Institute. He's beyond advanced in his field and has a wealth of knowledge about these brain cysts. I have a tiny scar and you would never know I had brain surgery.

[Benjamin905]

Im a 25 year old male with an arachnoid cyst located at the cerebellum on the back of my skull. Funny that you guys mention pressure inside your skull, hearing problems and severe nausea. Pain is worst in the morning, pressure feeling does not go away at all during the day or night. Weird thing is I can pretty much pin point as to were the pain is. The area to were I point is the exact area where the cyst is located. My pain specialist keeps saying its benign. Which I think is total crap. Also, its hard to get good pain treatment when your labeled as an addict. Sad to say I was self medicating dues to these pressure headaches. Anyways hope this sheds some light on whats going on for all of us. Cheers.

[SariaSaria]

Im 34. A few months ago I got to know I have 2 arachnoid cysts. The biggest one is 6cm x 5.5cm. No headaches nor seizures. As my neurological exam was normal my neuro-surgeon was about to discharge me for good, so I told him that I've seen an important deterioration in regards to my language skills (I always had a few dyslexia symptoms but now I have many others & they are getting worse with time). My big cyst displaces my broca and Wernicke areas where language are produced. Neuro-psychologist tested language production & found a lot of problems. Waiting a year to see if the cysts are growing and if my language problems increase.

Although my language disabilities are interfering my professional career a lot, a brain surgery may bring complications even worst as seizures.  So I am not in any hurry to have a surgery. I certainly will do it if we see that my big cyst is growing, which I think it is happening.

Advice:
1) Learn all about the brain area where your cyst is including what its tasks are & check how your brain is doing those tasks. If you have symptoms see if they are getting worse
2) Make sure an neuro-surgeon sees you. 3) Surgery is not always best

I'd be happy to hear from other people with arahnoid cyst that have also symptoms that match with DYSLEXIA.

Some of the symptoms I am now having are: Difficulty expressing my thoughts, be it  orally or written, it is like I forgot how to be concise. The words I need when talking/writing don't come to mi mind. If a new idea come to my mind to support what I am saying then I unconsciously  stop whatever I am saying without ending  the sentence and start the new one. Difficulty recalling  names even my boss' name. Difficulty connecting ideas when writing. Although  I always review what I have written, I often don't see that connectors words (like the, a, an) are missing, neither I realize about my grammar mistakes. I am having each time more problems with spelling. It takes me ages to write anything even emails.

[CoachSD]

I also have an arachnoid cyst which the doctor called "small".. But, I also have had two surgeries on my neck from ruptured discs(and likely need a third).. I have learned what my headaches feel like when it is caused from my neck. But, I get other headaches that I wake up with. Sometimes they go away after an hour or so, but I have to get out of bed.. Sometimes the headaches will last for a couple weeks or more. I also will go a month without a headache.. It's just so depressing when I am in one of my "headache modes", which I am right now... :(    Lately I have been wondering if lifelong tremors is a symptom of anyone else.. The tremors come and go like my headaches..

[Penndo]

Are you still having the problems with the painful scalp?  I have this from time to time.  I was originally diagnosed 4 years ago with my arachnoid cyst but the Dr. felt is was not symptomatic enough to warrant surgery.  I now have poor balance, nerve pain, vision problems, weakness and yes the painful scalp thing.  It litterly feels like the roots of my hair ache.  I just associated with the Fibromyalgia DX I have been given as well.  I usually don't mention the painful hair thing because it sounds so strange.  I am going to the neurosurgeon to figure out what they are going to do with my cyst as it has become quite large 5.5 x 3 cm.  Hoping you are doing better.

[vicekop]

Sooo frustrated!  Ive been having numbness on the left side of my face and skull the past year and a half. I had a CT scan that showed 'something' so was ordered for both and MRI and MRA. The MRI showed I have a cyst on the brain that 'isn't life threatening but needs to be watched every 6 months to a year'. In the meantime, the numbness continues to frustrate me. I can feel that I have an itch on my left region, be it on my eye, forehead or scalp, but when I go to scratch it...NO RELIEF! In the meantime,  I keep getting told 'nothing is wrong'. Sighhhh

[rayfan36]

Good afternoon, all. Reading all of your posts, I don't feel like I'm crazy! I'm on my second Neurologist who keeps telling me, "you were born with it, nothing we can do you just have to live with it and we will watch it." yeah well in 1999 (I was 23) when it was first found it was the size of a silver $, now it is the size of a grapefruit (right temporal lobe), ummmmm yeah something wrong with that picture! But my headaches, vision issues, "fogginess" as I call it, has nothing at all to do with it. I asked if it was possible that when I was ill with meningitis type symptoms back in 1995, could that have caused this...straight up no. did not want to entertain that idea, 1 neurosurgeon said yes it was possible but did not go any further with it. There have been a few time my face went numb but nothing was done there, just checked for stroke symptoms and released. I did have a cervical disc fusion a year ago and that helped with some issues but that did not help the vision problem, memory or nausea with  headache. So frustrated that no one wants to help.

[Penndo]

My scalp does get very pain full  at times.  I never understood why.  I would literally feel like the roots of my hair ached and I would touch my scalp and it felt somewhere between a bad bruise and sun burn,  I don't know how else to describe it.  I avoided telling many people about that because I just figured they would say it was anxiety or something to that effect.  I have a large arachnoid cyst originally diagnosed in 2011.  the doctor just took a wait and see approach.  Now 4 years later,  I have been through considerable amounts of pain and problems not knowing if the cyst was part of the problem.  Now, I am being referred to a neurosurgeon for evaluation and treatment.  I just somedays tell my husband and closest friends  that my hair hurts as crazy as that may seem.....  

[wendylou66]

I had surgery for an arachnoid cyst last March (17) my balance got better and so did my memory but I now have pain in my scalp too, I think your description of it is pretty good. I hope this gets better though and am contemplating getting doctors help (just to see if this is normal more than anything)

[v_dopey]

Hi there I am new to forums forgive any mistakes. Reading all of the above I think you must all be in the states - here I Britain we are decades behind you. I found out that I had a large primary arachnoid cyst on the on the left side of my brain after having a routine scan when I accidentally knocked myself out walking into a plank (Laurel and Hardy have nothing on me when it comes to being clumsy). I have suffered from literally blinding head aches, pressures in the head, times when I am in so much pain I am locked in the fetal position when the smallest movement causes extreme pain - right now I have deafening tinnitus and a pressure pain. I always struggled in school and was constantly amazed at how everyone else found it so easy to concentrate - I basically had to teach myself i am now 51 and have degrees in maths, science,  education and art. All the doctors seem to offer here is a shunt (a pipe from the brain to the stomach) which I have heard bring their own set of problems. Two years ago i had key hole surgery to have the cyst drain (basically they drilled into skull just above my left ear) - the morning of the proceedure the surgeon ask me which side it was on which didnt inspire much confidence. The day after i work in a splendid new world feeling how most of the rest planet must feel without head pains - unfortunately the cyst filled back up - i understand that removal of cyst is more common in thUS i am looking for somebody experienced in removal here, I also suffer with the arm and leg numbness as previous have mentioned.
Basically my philosophy on life is a day without laughter is a day wasted and even with all of the pains I have on a daily basis there are very few days I haven't laughed with someone. Forgive any typos, to top it all off I am dyslexic.- remember laughter can sometimes be the best tonic - I wish you all well and a positive future.

[CathyMarySherman]

I have had a craniotomy for my arachnoid cyst. Now I am 9 months post surgery.  I'm very grateful that my pressure headache went away at the time of the surgery; and has never returned.  But I would like to hear from others who have had the craniotomy to know how long it might take to regain balance.  I don't know if I'm trying too hard; or not enough; because I have regressions.  Now I'm just taking significant rests 2 times a day; and doing no activity for over 90 minutes.  

[Lfdmu]

My daughter is 7 years old and she was diagnosed with an arachnoid cyst when she was 3 years old on her left temporal. Just on August 2013 she started complaining a lot of dizziness and it has be constant and persistent. I have taken her to the Er at the children's hospital where she is attended by her neurologist . They performed a fast MRI and said the cyst was stable ... It's a 3cm cyst pushing on her left temporal lobe. So, that night I went home with no answers. Then I took her to an E.N.T., which referred her to have an ENG done and everything came out fine. That was out of the way. They did prescribed her with meclizine just to see if it could help her dizzy spells. Although, she didn't have any problems with her ears and so on. After, a while on trying with meclizine and no results I took her back to the Er on February 2014 and they told maybe its vertigo . Ok, here we go again no answers because vertigo is also a symptom of the cyst ,but yet they don't think so. I went to the neurologist that same week and I explained everything and then he ordered a video EEG . Nothing came up!!! Ok so they have asked me questions of my history and family history . I said I have migraines at times.. So based on my answer they have decided to diagnose my daughter with migraine that is Related to vertigo as we'll.  I am getting very anxious and I have decided to change hospitals. My daughter is always complaining about this and she also vomits and gets nausea. She says she has to stop playing at school due to her dizziness. I ask her to rate the dizziness from 1-10 and the only respond that I receive is the lowest : 3 and the highest : 11.  This is during the whole day she will tell me one minute it's a 4 the next an 8 , then a 5 then to a 10.  I want to help her and feel like I have my hands tied, I am not giving up and I will go to second, third, and even fourth opinions. The to me it's ironic how everyone has the cyst and complain about the same symptoms, yet doctors believe it doesn't. Odd . -_-

[twinkles186]

I was wondering if any of you guys have painful scalp

[crayons64]

I too have the same problems with vertigo and was told it was Ménière's disease.  The hearing loss that came on quickly in my right ear from what I have been reading can be connected to the Arachnoid Cyst.  I have been struggling with this for years now.  Lacefairy, I would like to know what meds they are using for your BP as I am now on 4 and they do not seem to be doing me any good.  I may finally have a neurologist that is listening to me and I will be seeing a neurosurgeon soon.  

[Lacefairy]

You are the first person to mention vertigo in relation to cysts. My vertigo was first thought to be related to high blood pressure medications. During the search an MRI found a cyst behind my right ear which I was told was nothing. After several changes in meds, my bp is stable but the vertigo is worse and headaches more frequent. Now I'm going back to neurologist. I found this community searching for a vertigo link. To my cyst. Anyone else?

[Chloemarie1991]

Hi to everyone, I'm new to this and never posted before but I agree that the cyst seems too much of a coincidence, I'm 21 this is my story...
Two years ago I stood up and had a massive pain up my back, diagnosed with two prolapsed discs and degenerative disc disease. After lots of other treatment, I had spinal surgery which has failed and my back is still as bad as ever. I had to leave Uni and my two jobs and was on bed rest and high morphine doses so I had been pretty down.
On an MRI for my spine, they found an arachnoid cyst on my brain in the posterior fossa but had no symptoms, a year later, I had several seizures losing consciousness and at one point stopped breathing, I had a headache lasting over three days where I was crying in pain (I have coped with a lot of pain but this was something else) I felt as though my head was going to explode. After several episodes, I was diagnosed with epilepsy. I also have problems with one of my ears when I am on the telephone it becomes very uncomfortable.
I just feel as if this is all too much of a coincidence that all my problems are connected as they're both neuro yet my surgeon says they are not connected and that my cyst is not the cause for my epileptic symptoms.

[Schawner]

Geo. hope your ok. I have exactly the same problem.
I had a bad motorcycle accident ten years ago. Up until recent about two years ago i had a severe vertigo episode and tunnitus in right ear for a while. Its recently come back and well what can i say its effecting everything i do.

I dont even want to leave the house.
I got diagnosed with menieres disease but 18 mnths ago had a mri and it showed a arachnoid cyst on i think right tenporal lobe.  

I think this must be the cause now from what i have read etc. my consultant in nuero science said the cyst was not much to worry a out etc but he hasnt helped much to be honest.

Be good to see how you are etc. im 28 and in england.

Regards

Steve