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633143 tn?1262133535

Arachnoid cyst diagnosis, conflicting doctors, extremely confused

After almost a week straight of a severe migraine-like headache with no relief from any prescribed medications, my family doctor ordered an MRI.  The results showed an arachnoid cyst, apparently of significant size.  Initially all I was told was that it was 4cm, and because of it's size I should have a consult with a neuro-surgeon.  They didn't tell me anything else about it, just that there was something on my brain.  I tried to do some of my own research, but it just scared me so I decided not to do that anymore.  I had a neurologist appointment already scheduled for two days, but that just turned out to be more confusing.  All I learned was that the cyst is close to the center of my head, right on top and maybe a little closer to the front (right where I thought it would be, because that is where I have sharp burning pain pretty much every single day and that is where all of my migraine pain goes to).  I also learned that it's about 1.7x2.?x4cm.  However, the neurologist was adamant that this was completely normal and made me feel like I was stupid for even worrying about it.  He told me that arachnoid cysts are very common, plenty of people have them, and that it had nothing to do with my headaches (oh, and that family doctors tend to overreact which is why they told me to go for a consult).  He insists that the pain I feel every single day is due to my inability to cope with the stress of having headaches.  He told me that if it will keep me from stressing I can go see a neuro-surgeon so that they can tell me exactly what he did.  Then he suggested muscle relaxers and shots in the back of my neck.  I left there feeling very dissatisfied and not very comforted at all.  Then, not twenty minutes later, I got a call from my family doctor telling me that they had heard back from the neurosurgeon they were trying to get me a consult with.  He had reviewed my MRI films and my chart and had requested that my consult with him be bypassed completely.  He feels that I need to be seen by a more advanced specialist surgeon as soon as possible primarily because of the size and location of the cyst.  So now I'm extremely confused.  I'm going for the consult, but I don't understand how two doctors can have such extremely different points of view on the same exact condition?  Is there a middle ground?  Does anybody have a similar experience?
13 Responses
449909 tn?1233409897
In the field of medicine, this is not unusual. Medicine is an evolving science. Each doctor's knowledge and exposure and experience can be different.

Most people with arachnoidal cyst will not have any symptoms, some may have headache. But according to the site where the cyst is sitting, it may cause other problems as well, and hence the concern of your doctor.

It will be wise to visit the various doctors concerned.

Best rgds,

Thomas Antony
Avatar universal
I know how you feel really.
I started having persistent headaches everyday and almost fainted when they told me I had an arachnoid cyst. Mine is about 2cmX1.7cmx4cm located on my left cerebellum. Then they too told me that the cyst isn't causing the headaches.
I have a copy of my MRI and am able to look at it and have found many descriptions of other arachnoid cysts on google, and decided that maybe that it wasn't very large.
6 months later they still don't know what is wrong with my persistent headaches, and I am not above getting a second opinion about it. For now the cyst  stays where it is but that is what I think is best not what my doctors are forcing me to do.

I think you should do your own research.
Find a neurologist that you like and trust, and discus with them all the options. Also some one should tell you that some time surgeons like to do surgery because that is what they like to do. Find a "conservative " surgeon and if they still want to schedule surgery then you'll have a better idea of what is really going on.
Once I started discussing this with my friends several people I know have had them and had them removed, just because it made them feel better.

It is your body and your health, don't let doctor push you in to doing something that your not comfortable with & don't let them tel you nothing is wrong when you think there is. Gather as much information as you need to.
I know you are scared (God knows I was) and I think with knowledge that fear will pass.

Hope that helps
633143 tn?1262133535
It does, thank you.  I think it's so crazy how I freaked out about how big mine supposedly was too, then went online and found out some people have them as big as lemons!  I really freaked out the first day after I found out I had it, and I think I'm finally starting to calm down... even though my doctors are pretty much refusing to talk to me.  =0/  They all keep telling me to wait to talk to my neurosurgeon, but that's not until January!  All I know is, that if they are going to make me wait that long, they had better have something useful to say.  If they are going to tell me that it isn't the cyst, someone had better be able to give me some clue as to what is going on.  =0p  The headaches are getting worse, I have a slew of other symptoms (like balance issues, sleep problems, fatigue, trembling, mood swings), and every morning I have the weirdest visual disturbances that are lasting longer ever day and starting to make me nauseous (but all, according to my neurologist, are all just"in my head"... apparently no pun intended).  I really want to find another neurologist, but I really have no clue how to go about this.  Everyone always says check references, but how do I go about that if I don't know anyone else who goes to a neurologist?  How did you choose a neurologist?  Is it just kind of a trial and error thing?  Because I've already been through two in the past year, and both have been unpleasant experiences. It's becoming exhausting.
Avatar universal
Sorry it took so long for me to get back to you, I havn't been feeling so well myself.
Depending on your type of insurace, search the web for other doctors in your area, your insurance sight is always a place to start-of course with the amount of pain that I am in the last thing I have started to care about is money. You can search what kind of fellowship they did, what papers they have written to see how they think. Also talk to EVERYONE, somebody you know has seen a neurologist for something, and will have something good or bad to say about them. Also if your symptoms are getting worse, you need to let them know.
I don't think your symptoms are in your head. But for me stress does cause my pain to be much worse "lowers my threshold" sort of thing. I know the cyst is still scary, I still think about mine everyday, but a mixture of topamax and pamelor for migraines has not made it go away, but the pain is signifigantly less (and don't give up the first 7 migraine meds didn't work-they actually made me worse).
Good Luck,
Avatar universal
The problem I have run into is that neurologists in my area, won't see you if you have been to another neurologist in town.  I had one that told me that my problems were not real,   I ended up changing insurance which he didn't take, that allowed me an out.  I have had two neurologist confirm the seizures that he told me weren't there.    Do what ever it takes to get with a neurologist that you feel good about that listens.  They are hard to find, but they are worth their weight in gold.  
Best of luck

Avatar universal
and I was reading your posts regarding arachnoid cycst and all of the
confusion. Im in the same boat, and it is really frustrating to find a doctor
that truly believes that perhaps the cyst is related to the headaches.

I have two cysts but the second is tiny, the first around 2.5x1.7x?
Ive always had headaches but attributed them to hormones. After a siege of
viral cold and sinus infection ive developed migraines now...so its migraines and headaches...fun

Im wondering about really if its worth it them going in there and draining it or fenestrating or whatever.
I guess that is a personal choice. I do believe though that doctors definately have different levels and
types of experience to draw from so they dont agree a lot of the time.
I hope someone is out there to read this because its comforting to hear from others like yourselves
thank you and regards
Avatar universal
Hey hmay42,

I've been with my boy for about 4 years now and the whole time he's had headaches. Recently we moved in together and it's only been since then I have understood what that really means for him.

He was diagnosed years ago with an arachnoid cyst and told that because of the minimal side effects, there was little point in surgury since it wasn't life threatening. For years he's had continual migranes and doctors have told him that's normal. Sure, normal to walk around feeling like you're seconds away from passing out? Not to mention lack of concentration, disturbed sleep and everything else that goes down with being in constant pain.

Over the years he's basically built up a resistance to standard paracetemol and similar medications. We've gone back to basics and tried herbal remedies, vitamines, relaxation, all with minimal results. On the medical side we've tried naproxin and similar painkillers used for headaches to no avail.

He feels a little drained trying all these different things, because for the most part he's been here and tried it. I'm not so quick to give up and I'd be really keen to hear what people here have tried and how they felt about outcomes.

You all have my tremndeous support. As an outsider, i can only look grimy in the window of this as medical science provides you a label and no answer. I know it's ongoing, but it's easy to be disillusioned when you are told this is somehow "normal". Keep fighting the good fight and my heart goes out to you all in the hopes that soon an answer will come.

Avatar universal
I'll add my own experience here.  first of all, if you have a doctor tell you it's an 'incidental finding' and that your symptoms are 'normal' and part of something else, run like HELL.  I went through this for many years and it took 11 years and 30 + doctors to find one worth half a ****. they are RARE (finding a neuro/neurosurgeon who actually GETS that these things are real, destructive and symptoms are HUGELY related to the cyst)

headaches, mood swings, weight gain, lethargy, changes in personality/relationships, hormonal changes, the list goes on - i had mine surgically removed @ cedar sinai hospital in los angeles and by the time mine was removed i was really sick -

now it's years later and although i was healthy for years, i'm sick again, this time/w a pituitary tumor which often go hand in hand/w arachnoid cysts. (have a background in med research)

seriously - if someone tells you they're not a big deal?  don't pay them, get the hell out of their office - it just means they don't get it and can't help you.
Avatar universal
Hi this is my first time writing on one of these but Im wondering if anyone can shed some light on my symptoms....

I have always suffered from head aches, generally around the time of my period. They seemed to get progressively worse so I decided to try coming off the pill which I had been on for 10 years, to see if it helped. Since then I have had a constant head ache/migrane. Everyday for over a month now!  I have been working in the US so had most my treatment over there. Two MRI's show an arachnoid Cyst on my left side.

Like many of your stories my Doctors have acted nonchalantly over this finding. no big deal, probably unrelated to the head aches etc. There diagnosis remains that my head aches are hormonal!

I am on migrane medication and Anti-depressant medication which is meant to keep the head aches away but honestly just masks them. I still feel a constant throbbing.

I am now back in the UK and will be seeing my GP on Monday. Is this hormonal or should I be pushing my doctors to actually do something? And dose anybody know anything about surgery? I heard it can lead to lots more problems down the line???

Thanks so much for the support and good luck to all of you with the same struggles.

I have recently been diagnosed with an arachnoid Cyst on the left side
Avatar universal
My arachnoid cyst was found by accident 2009 when an MRI was ordered after physical therapy on my arm and neck was not improving.  It is about the size of a golf ball.  It's been constant pressure on my lower right lobe, until last year when it shifted slightly more mid-center.  I causes spinal fluid to back up and interrupts proper flow.  Most of the neuro doctors have been dismissive and said that the cyst is not causing the problems.  I have only had two agree that the pressure of the cyst, combined with the excess spinal fluid in my skull, pushes trigger areas on the brain.  Mine is short term memory, tremors, spacial perception ( I walk into tables and door frames often!) as well as exacerbating my panic and anxiety disorder.  I have lose of strength, I can't stay focused or concentrate for more than a few minutes. The only thing the doctors do agree on is, being where it's located and how my brain had grown around it and adapted, it is unwise to remove it or drain it...because draining it opens me to infection or the potential for the cyst to refill and take in more fluid.  I started Pamelor 3 weeks ago.  I am having similar reactions to it as I did the cortisione injections in my neck.  I am experiencing new areas of pain and tremors, pins and needles and spasms.  I am as frustrated as you are hoping to find a doctor that can make the pain go away and not tell me that the cyst and my fibromyalgia can 'most likely" be managed with Pamelor.  
Hope you have good luck finding a doctor to treat you.  Hang in there.
Avatar universal
I also have an arachnoid cyst.  I have dealt with daily headaches and migraines landing me in the hospital several times. I had an MRI that incidentally found the cyst on the left side of my head approximately close to my ear.  It's been a little over a year and nothing has been done.  It's approximately 10.25x16 mm in dimension.  I've had these headaches for years.  I'm thinking due to head trauma from a pool accident in 2008.  I misjudged the shallow end and dove in hitting the bottom face first.  I broke my nose and headaches started after that.  No doctor has given me a straight answer and said nothing to worry about.  Now I'm experiencing memory loss.  I can't remember what I said or did the day before.  I'm having problems seeing, vision is blurry.  Also experiencing hearing loss.  I'm not as steady as I used to be and run into just about everything.  I'm lost and don't know what to do now.
Avatar universal
When I read your post I couldn't believe how similar it was to my situation! I've been dealing with migraine-like headaches in the middle of my forehead and above my eyes for about a year now and after finally getting a catscan I found out that I have a "moderately large" arachnoid cyst in my left middle cranial fossa. I was definitely extremely nervous when I first found out, but a little relieved that I found out the cause of my headaches.

Then things started to get really confusing when I saw my neurosurgeon and he also said that this was common and that many people are running around with this with no problems. He said that my symptoms were likely not coming from the cyst, but who is he to judge that?? I don't understand how these doctors are so quick to rule this out. I even have extreme pain even to touch the area of my head where the cyst is.

I've been given the steroid injections in the back of my head and have tried several medications, but nothing gives me relief. I know it probably is the cyst and I don't understand why draining it isn't an option. It's been getting really frustrating.
Avatar universal
I was diagnosed with a large(31x14x47 mm) arachnoid cyst in the posterior fossa.. Just a week ago.. I was naturally devastated.. My whole world stopped. I sank into a deep depression and couldn't do anything but have panic attacks and cry hysterically. My GP gave me a referral to a neuro surgeon who rejected me straight away and told me to go and see a neurologist.. This made me even more nervous because I didn't know anything about cysts other than what I had read on internet and believe me... some stories are better reserved for a science fiction magazine.. After my first rejection, I upped the antique and focused on the more experienced well known neuro surgeons. To my dismay I got an appointment seven months in the future .. time I didn't believe I had at the time. I got a phone call a few days later from the brain and spine clinic and they mentioned they had a cancellation..I was super early for my appointment.. waiting whilst crying uncontrollably at times as I was so afraid .. When the surgeon finally let me in , I underwent some very basic office tests which seemed quite archaic for 2016, I answered a few questions about how I had been feeling.. I rattled off my symptoms which have been for a long time dizziness, head aches, depression, fatigue, short term memory loss, pressure at the back of my head, balance and nausea, tingling in arms and legs... And with great anticipation I waited for his verdict.. He dismissed the cyst and my concerns immediately.. He said it was asymptomatic, ie that it was not causing any of my symptoms I have been experiencing. I sat up straighter in my chair and blinked.. not quite registering that he had so calmly dismissed an abnormal growth in my brain.. "Cysts are all a bit of a storm in a tea cup" He said it was impossible for the cyst to be causing me any symptoms as it was not pushing on any of my brain matter in such a way to inhibit fluid or nerve flow.. the cyst wasn't pushing on my spine. "See ?" he said and showed me on my CT scans to prove his point... And sure enough my brain seemed intact despite this disgusting circular dark spot at the back of my head. The surgeon pointed out that these type of cysts are discovered incidentally. He saw in my history that I had done a CT scan in 2015 and he found the cyst in those images, exactly the same size. The radiologist had not been looking for a cyst in 2015 so had not found it. Admittedly the surgeon just zoomed in and out of my scans from different screens and didn't measure them so it was more of a visual conclusion I thought.. The surgeon then immediately deducted that this was a cyst I had had from birth. He went on to say that I should see my cyst as a birth mark.. To think that I have had this cyst for life is mind boggling.. I asked the surgeon what treatment I could get and he said that they don't touch these type of cysts because it will do nothing.. and besides it is asymptomatic he repeated and I was silently wondering whether he thought I was wasting his time.. This cyst has been with you for life and is not the cause of your symptoms..Matter closed.. I opened my mouth to ask him if they would ever operate on me and they said no.. I don't want to see you again.. I do operations on brains , this is not where you should be.. You should go and see a neurologist.. I asked him about my life expectancy , risk of seizure, risk of rupture.. and once again he dismissed all my concerns and said that I would definitely not get a seizure, very low risk of rupture.. it wasn't growing.. He gave me a referral for an MRI scan and told me to go back to my GP and get a referral to a neurologist who would give me medication to any of my symptoms.. So here I am reflecting over this one day later.. Still feeling the dull pressure type presence in the back of my head... feeling scared and wondering whether I was dismissed too early or whether I am imagining that the cyst is causing all my symptoms.. I hate this alien inside me.. I am so scared.. worried about my future.. I don't know what is going to happen to me.

Viktoria Stark
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