Arachnoid Cyst
 

Just wondering if anyone here has an Arachnoid Cyst?
My Arachnoid Cyst, in the posterior fossa, was discovered 10 years ago, (with an MRI) after 2 years trying to find answers to my symptoms.
It was operated on, and so far, hasn't regrown. Although we were sure it had, because the symptoms returned early last year. But an MRI didn't reveal any new growth.
But now it seems I have Occipital Neuralgia, originating from the cyst operation, which damaged the Occipital nerves!
Just my luck...
:(

~Jaime~

Symptoms
 

What were your symptoms when you were diagnosed with the cyst. AFter 2 weeks of tremor/shaking symptoms they did an MRI on my brother and found a cyst in the back of his head (I dont know the exact location). The doctor states that these are benign and cant be causing the symptoms he is having. Searching we have read differently.

Thanks,
Michelle

My symptoms
 

Hi Michelle

My symptoms were mainly constant chronic headaches, dizziness and balance problems. First it was thought it was just middle ear problems and went through all the tests with an ENT specialist, but I was finally sent to a Neurosurgeon who sent me for an MRI that showed up the cyst. Mine had grown to a size where it was putting pressure on the brain and causing the symptoms. Some cause symptoms and some don't, depending on the size and location of the cyst. My Neuro took my symptoms seriously, I guess some doctors don't, unfortunately. I think his Doctor needs to investigate further. A Cyst is usually benign, but they can still cause problems if they grow too big.

~Jaime~

Thank you for your reply. Another neurologist that we consulted with (a family friend that lives 1000 miles away) said that they cause no symptoms as well. We still want to go and see another locally for a second opinion.

Thank you,
Michelle

I have one.. thought I was all by myself.
 

Hi Jamie, Hi Michelle,

I was diagnosed with the Arachnoid Cyst, mine is specifically called a
dandy walker, about 7 weeks ago. I had my surgery, shunt implant, two
weeks ago. Oh what fun.....

This all came about because one morning I woke up and had this strange
electronic sounding echo in my right ear. Finally saw an ENT, he said I
lost my low range hearing which caused the echo. He had me do an MRI
where they found the cyst..

My symptoms were, my hearing, balance, which got wickedly worse after
my hearing went, I also had hand tremors, but didn't really associate it with
the cyst.

It's been two weeks since I've had the shunt put in. My symptoms come
and go. When I wake up in the morning I feel great, but as the day goes
on, depending on how active I am, the symptoms come back.

I really like my neurosurgeon. He was very up front with me.
The way he explained it....I have had this all my life. For reasons
unknown, it started to really affect me. All he promised me was that
the surgery would keep my symptoms from getting worse. I may not
get any better, but I could.

My cyst was/is huge, 8cm x 6cm x 3.5cm. It really pushing my brain forward. He couldn't say for sure that by draining the cyst that my brain would shift back thus relieving the pressure it's putting on my nerves.

It's only been two weeks, It could take several months for the brain to
realize that it has some breathing room, so I'm still hopeful:winky:

Hi Andy,

Wow, so strange to hear your story, and I can understand what you are talking about! My cyst was similar to yours, A Dandy-Walker variant Arachnoid Cyst in the Posteror Fossa. Maybe not quite as big as yours, but causing many symptoms, and it took nearly 2 years to get a diagnosis. Finally an MRI found the cyst.
So glad to hear that you got the treatment you needed for your Cyst. I've heard stories where some people can't get a Neurosurgeon to take their symptoms seriously and operate. So glad you found a good Neurosurgeon.
I didn't have a shunt put in, I had a cyst fenestration. I hope that the shunt works for you and there aren't any problems. Yes, it will take time for it to work, to relieve the symptoms, and the pain. If you have had some improvement in 2 weeks, then things will only get better!
:)
~Jaime~

Thank you all for your input. My brother had his appointment with the neurosurgeon on Friday and he also said the cyst can not be causing the symptoms he has. At times he has very impaired motor function, headache etc., but they think its coming from elsewhere.

They want him to see a doctor in NYC or Toronto because what is going on is so unusual an debilitating. We are in PA, so either is a far drive, lol. We will see.

Take Care

Hi Jamie...

I got excited when I saw your original post.
At last I found someone else that has it...

My neurosurgeon said I am patient number 3 with this for his career.
I was lucky to find him right off the bat..

It's been a little over two weeks, and so far no great improvements.
I still start tipping over, and that echo in my ear, but it changes
from an echo to an almost constant whooshing noise... could be improvement..
I'll be optimistic.. My right side weakness and the tingling in my fingers did
go away.. so that's a plus.. time will tell...

I'm sorry to hear about your headaches.. That really sucks..
It seems like an awfully long time for this to crop up on you
after the surgery.. Are all the old symptoms coming back too?

My Neurosurgeon specifically ruled out the cyst fenestration for almost specifically your problem. He told me that sometime they close up on there
own and you have to redo the whole procedure.

What is your doctor planning? Drugs I assume.......
Did he compare your original MRI with the new one?

Andy

Hi Michelle,

I've been doing research on cysts for only about 8 weeks, night and day,
almost 24/7. I haven't come across any article that relates your brothers
symptoms to brain cysts.. Cysts just tend to be irratating, making quality
of life a bit unpleasant and frustrating.. at least for me.

Than again I'm just some guy on the internet...

Considering your brothers symptoms, it might be worth it to make the trip
to NY...

Keep us up to date....

Andy

Hi Andy,
I had some of the old symptoms, which made me think it was the cyst again.
But after having an MRI, I was told that the cyst hadn't regrown, although there is still some space where the cyst originally was. I asked about it, and was told that it takes a long time for the brain to move back into that space.
I was told back when I had the operation, that cyst fenestration was the best way, but I guess that depends on the surgeon operating. My neurosurgeon told me he made the hole quite big so it wouldn't grow back.
At the time, I never really understood what it was all about, and what was to be done, but when I got the internet a few years later, and more recently when symptoms started again, I have done a lot of reserch on the subject.
I have tried a few different meds for the occipital neuralgia, but they all had a lot of side-effects. Next week, I am going back for a nerve block. Hope that works.
As for how the neuralgia developed years later...no one is quite sure, but when I mentioned that I had been on Anti-depressants for over 2 years then stopped them, and the headaches started after that...the neurologist thought that it may be the cause! Seems strange, but I guess anything that messes with the brain, can possibly cause problems later.
:confused:

~Jaime~

arachnoid cyst and and syrinx
 

I was injured in the mid back and developed sringomylia ( syrinx) and an attached arachnoid cyst. Both were removed by a surgeon who has studied this all his life. Was head of Siringomylia foundation at one time. Dr. Urlik Batsdorf. Have any of you had a midback post tramatic cyst and syrinx. Thanks:eek:

Hi, Sorry, I can't really help you there. My Arachnoid Cyst was in the brain/back of head and not caused by any injury. I don't really know anything about syrinx and associated cysts in the mid back.
:o
~Jaime~

Left Temporal sub-Arachnoid Cyst
 

Hello everyone.
When I was 23 years old and in College having lunch I had this very memorable attack. Both my arms & my whole face went numb. I remember not being able to taste the chicken I was eating. I thought I had a stroke.
I went to emerg who then took ct scans. They found a left temporal sub-arachnoid cyst. They told me I was born with it. anyway, after that first sesure episode I started having horrible episodes every day. I would get this strange feeling before it started. I cannot even explain what I went through with each episode. IT was visual, inability to focus, sort of dream like.
I was so exausted after each episode. I was never quite the same after this started. I seen a nuro surgeon. He did further scans and decided to operate. I had a shunt put in the first time. Before surgery I was put on both 400 mg/day dilantin & 800mg/dy tegretol. I still had sensory seisures once a week or so. The shunt did not work out. It kept blocking up with dried cerebral spinal fluid. They tried 3 more procedures with different sorts of shunts. One of them had a plunger just below the skin at my stomach area. When the shunt got blocked, Id push on this plunger under the skin, sending air up the tube to hopefully clear the tube. All it ever did for me was give me headaches. Finally, they broke the tissue around the cyst down which caused it to scar. The spinal fluid would not penetrate the scarred tissue & therefore not fill the cyst up. So far it has worked. It has been 15 years since that 4th surgery. The damage to my temporal lobe has been done. IT got pressed inward from the lifetime of pressure against it. I still have sensory seisures. I also have memory issues, I have to write stuff down, deep depression, anxiety, inability to focus properly, Inability to remember directions, even though Ive driven there 30 times. Inability to recall time frames. If someone asked me when I was last at the doctor & it was just 2 weeks ago, I would not know if it was 2 weeks or 2 months ago. I have trouble with faces & names. I also have trouble fully following a conversation. I have also been left with a chronic light headedness. It never goes away. Sometimes it gets worse but never leaves. Life sucks!

Rick

I have so many QUESTIONS?
 

To all of you on this forum::confused:;)

I feel blessed to have just found this forum yesterday, as I have been basically going through so much emotionally. As it all started with horendous migraines about four (4) years ago, my doctors always shook it off as stress headaches, would give me pain medicine and sent me home. Then last year I got to the point that I was having so many physical problems, that mostly had to do with nausea, anemia, and ofcourse those awful migraines more like every few days. I had finally quit my job as I did not think it fair to my employer to have me constantly call in, or to have to go home only in a couple hours after starting my shift. I finally went to the local clinic which an MRI was done, he sent me to a neurosurgeon, and sent me home stating that there would be more danger to do anything as to the location (behind my right eye), as well as that it was too small to cause much damage. My general doctor explained that it measured at 3.7 or about the size of the end of a thumb. I am mostly curious as to if any of you know how fast one grows, and have any of you had one around the same area? Also I concerned about progressive nervous ticks, and do you experience other pain in other areas of the body your doctor cannot explain? So any advice you can give me would be greatly appreciated. May God Bless You all and give you his peace and comfort. MERRY CHRISTMAS and HAPPY NEW YEAR

Hello Lydia,

I'm not sure how fast they can grow but a scan should be able to tell you and your doctor if it is growing from the intracranial pressure, which I think they can see in the vessel (?) as well as the tests they do when they look in your eyes, etc. Have you discussed your symptoms with a neurosurgeon? I think around here (Ontario), they do tend to opt out of surgery when unnecessary. A neurosurgeon should talk with you and weigh the risk and benefits of surgery.

Mine is not causing any problems other than chronic headaches which are currently more or less controlled my topamax. My doctors are saying the headaches have nothing to do with my 9.5 x 7.5 cm cyst sitting in the back of my head. While I want to believe that, I find it hard to believe because of the literature I've read.

Does anyone else out there have a large cyst and if so, do you have symptoms? Has anyone else out there taken headache medication? Did it provide permanent relief? Without the medication these headaches are crippling and I can't imagine that I can take them forever. I also sometimes wonder if the cyst is a ticking time bomb.... If it grows, there is not much room in my head for much else. I wonder how my brain manages to be in there too. (lol)

Viki

Hi ~ I didn't have that cyst (thank God) but I did have a tumor - a grade II oligodendroglioma - deep in my left temporal lobe, leaning against my hippocampus and causing seizures.
It was removed by surgery Feb. 2006, but seizures continued so I had more surgery May of this year.

My point is .... (I talk too much) is your best hope for great care is a university hospital. I can't tell (type -lol) how many tests and how hard these people worked trying to do what was best for me and even easiest for me.

IMHO - A university hospital is a great place packed with great doctors.

Hi, I have just joined this site and read your message. As you also live in Victoria, I was hoping for the name of your surgeon or hospital that can help. My close friends have a son that has the same arachnoid cyst as yours, and are desperate to find more help. They are currently in Queensland and although they have tried many and indifferent ways to combat his headaches and pain etc., unfortunately to no avail. They are hoping to find a surgeon that has more knowledge in this area. I hope you can help us. Regards
LizJ

Hi Liz,
My Neurosurgeon is still operating at the same hospital he was at 11 years ago, when he operated on me. He is A/Prof Michael Murphy, and he is now Director of Neurosurgery, at St Vincent's Hospital, in Melbourne.

~Jaime~

Wow...I just skimmed this whole thread, and I am shaking my head. I have known for years that neuros were clueless about matters of brain structure differences and foreign growths, but this is horribly frightening. Anyone who has any malformation or foreign growth in the brain--no matter how slight!--MUST see a neurosurgeon. All a neurologist can do is treat symptoms--i.e. give you drugs for pain. He cannot treat the source of the symptoms, and he'd rather let you die than admit it. :mad: I learned this lesson the hard way 20 years ago in college. (Oh...they don't know anything about any side effects or possible reactions of the meds, either. :rolleyes: You need the pharmacist for that.)

Please--all of you--get to a neurosurgeon right away. Neurologists are a waste of your time and could even kill you with their idiocy, ignorance, and arrogance.

Good luck...

LIZARD :)

arachnoid cyst righr posterior fossa
 

i am a 47 year old female,6months ago had a ct because i developed the shingles in my right eye. i have had them 3times over a 9month spand. the pain was so bad i thought i was dying.they said the cyst was 4.2x4.0cm,more or less learn to live with it.i had an mri this week and now it is 5.1x3.8x3.9. i have soo much pressure in the back of my head at times and behind my right eye at times. i have had so many health problems over the years,have not worked in 3years.doctor says none of these problems have anything to do with the arachnoid,recheck in 1year. they say my problem is fibromyalgia. i beg to differ.:confused:

Lizard, I totally agree with you there!:)

Hi Lucymay
I beg to differ also! Looks like you have had to deal with one of those cluless Doctors or Neurologists. A Cyst that size surely would be causing the headaches, pressure and other symptoms...I know, I've been there! Get another opinion, or more, or try to see a top Neurosurgeon, not a Neurologist. Just my opinion, but I'm sure the Cyst is the cause of your headaches...
~Jaime~

Arachnoid Cyst
 

Hey Jaime, Saw your post today, this is my first day here. I also had a arachnoid cyst, mine as a child. I actually had my cyst removed it was on my auditory canal and 7th and 8th cranial nerves. Mine was removed at childrens hospital philadelphia in the early 80s. Then I had several reconstructive surgery procedures due to nerve damage. i couldn't smile or close my eye, also limited hearing in left ear. Figures I would get something so rare. But we all have our stories and problems. I figure this is what God gave me and maybe it will be useful to share my story with others. Wishing you all the best

Hi Amy!!
 

Hi AMYhttp://www.freesmileys.org/smileys/greet013.gifand http://bestsmileys.com/welcome/18.gif!!!!


Please feel free to roam around the boards and jump in ANYWHERE.... The water's great and the people are very caring and supportive!!!

If you would like... please introduce yourself over on the New Members Forum : http://neurotalk.psychcentral.com/forum88.html

That way more people can meet you and welcome you to our little corner of the world!!

Hope to see you around the board!!
:)
Abbie

Hi Amy,
Sorry to hear you had quite a bit of nerve damage from the surgery. I had some nerve damage to my occipital nerves from my surgery, but not quite as bad. Do you get pain still from the damaged nerves? I hope things aren't too bad now.

~Jaime~

Left front arachnoid cyst
 

Afternoon folks,

I have been symptom free for almost 21 years. In December '06 I started to develope balance problems. Seen my DR who said I had an ear infection. This did not improve and I was referred to an ENT specialist who was puzzled. I then was sent for an MRI scan which showed I have a large left front arachnoid cyst. At the time they did not want to do anything and wanted to see if the pressure settled. Unfortunately I then developed severe vomiting and headaches. The national health service seemed to take forever and almost a year and a half has passed so I decided to go private. I found a neurosurgeon and I visited him 2 weeks ago. He done another scan. He believes although my cyst is at the front the pressure being put on my brain is causing symptoms like vomiting, headaches and balance problems. Everytime I have flown my balance symptoms have deteoriated and he said this is due to the cabin pressure adding to the existing pressure from the cyst. I am now awaiting my letter and I am going to have a shunt placed inside the cyst and a tube running under the skin from my brain to my stomach to constantly drain the fluid. Hopefully this should relieve the pressure and improve or eradicated my symptoms given some time. Reading the postings these cysts seem to vary in symptoms from person to person depending on the individual, size and location of the cyst. I am just praying my shunt is a success and I can gain some normality back to my life. I wish you all luck in your own cases as I understand how frustrating this can be. I agree, any of you who seem to be having no luck with your GP keep pushing and pushing until you find someone who is willing to take the time to thoroughly look at your case and try and help. PLease respond to this post to give me your input and let me know what you think. All the best.

Son with 2 cysts
 

Hi

I also have been reading the threads/posts on here. My son was diagnosed 4 years ago with 2 archnoid cysts at first we were told he one. Let me state he passed out in school one day this how this all came to be discovered. He was unconcious for well over 20 minutes the medic wasn't sure they'd bring him back...thank god they were able to. I fought with the ER to do a scan (they didn't want to do one) due to a family history of aneurysms and tumors I demanded it as did our family doctor who met us at the ER.
We took him to a few doctors (neurologists included) and they said it's nothing to worry about. I never felt comfortable but after seeing many doctors and getting the same answer I figured they knew what they were talking about. He then passed out a year later for 8 minutes still same answer.
He's now over 18 and I worry about this a lot. I'm wondering if I should take him to an adult neurolgist now that he's over 18.
He has scans every year to monitor the growth and so far they have not grown.
He's had cardic work ups as well which were all fine.
Just wanted to share and get some advice.
Thanks everyone.:grouphug:

Hello I am new here, I have a poster Fossa aracnoid cyst
 

Hello,
I was so glad to find this thread, I am new here today.
I have a 5.6cm poster fossa arachnoid cyst with boney remodeling, which just means it is to hard to reach.
I had an unrealated surgey and when I awoke my head was never the same.
that was in april 2006.
My ongoing symptoms are head pressure, head pain expecially in the back it feels like I was hit with a baseball bat. 3 seizures, over 50 episodes of left side pyralisis, tremors and muscle spasms even when I sleep, falling and all the rest that goes along with it. Nausea, vomiting, dizzines and hearing loss episodes.
I am just sooo happy to find friendly people.
Thank you.
Maile:)

arachnoid cyst
 

Hello Jaime, I also have a posterior fossa arachnoid cyst about the size of a gulf ball. I have been told for years that it was not causing any problems. But I am having many neurological symptoms, though some may not be caused by the cyst, I can't help but feel that some are. I believe that my facial palsy, dizziness, tremors, concentration problems, headaches, seizures, etc must have something to do with this? I have many other neuro disorders so I am not sure and either are the doctors--what is causing them. How large is your AC? Was yours growing, and thats why they did surgery? If you had to do it again would you have the surgery. Also, did it take alot of neurologist to look at you before one agreed to do the surgery. I look forward to hearing from you--thanks from hutch

arachnoid cyst
 

I was wondering how your brother is doing? I too have an arachnoid cyst. I have many type of neuro symptoms but am not sure which is linked to my arachnoid? I to am told that my arachnoid is NOT the cause of my problems. This is very hard for me to believe because I have: Facial Palsy-headaches--partial seizures--tremors--depression--cervical dystonia--vocal cord dysphonia, mieniers disease, and possible Meiges syndrome. It seems to me this is an awful lot of neuro issues, yet my cyst is not responsible. I hope I hear from you so we can discuss this further. from hutch

arachnoid cyst
 

Jaime, I hope you are feeling better these days. Are you glad you had the surgery? My cyst is 4.5 x 5 x 6 cm. They say it is not responsible for any of my neurological symptoms yet they don't know what is? I hope to hear from you thanks---hutch

Hi Hutch,
Yes, I am glad I had surgery, it was a while ago now, but I'm glad my Neurosurgeon decided to operate at the time.
When some Doctors say that the cysts cause no symptoms or other neurological problems...they are usually wrong! It's often difficult to find someone who agrees that cysts cause problems in some people. You need to find a Neurologist or, preferably a Neurosurgeon who will take you seriously when you have a large cyst causing problems.
~Jaime~

arachnoid cyst
 

I am so glad you were helped. I am VERY frustrated because on one hand I have sooo many neuro problems:facial palsy, migraines, depression, ADD, concentration problems, tremors, Dystonia, vocal cord dysphonia, partial epilepsy, meniers disease with dizziness and balance problems, and POSSIBLE Meiges syndrome, I most recently got diagnosed with RLS?? I had surgery in 90 for spinal stenosis. Then on the other hand I have this golf ball cyst near my brainstem, yet none of these issues is felt to be directly related?? My surgeon said that they can tell I have had this a very long time because the inside of my scull is worn where the cyst sits----seems to me that would indicate that there was at some point, or still is some type of pressure??? The surgeon did tell me that the location of my cyst is in a very dangerous spot and he feels as if he would do more harm then good. With all that is going on with me I have a very difficult time grasping the idea that there is not a connection. As much as I respect and trust my surgeon I am thinking about going to the Chiari Institute in Great Neck, NY for a second opinion, but wonder if I am wasting my time? My movement disorder doctor explained to me that brain surgery is not a piece of cake---I told him I understand that completely, but all my Neuro diseases and disorders are no piece of cake either. He didn't comment about that.If I found a good surgeon who would do the surgery I would not hesitate for a moment to opt for the procedure to be done. Every time I turn around I am being diagnosed with a new neuro problem?? It just doesn't make sense to me. I am sorry to ramble on and on but this is very hard to condense. take good care, and please keep in touch---hutch

WOW!!

I saw this and felt compelled to reply as well. My son was diagnosed with 2 arachnoid cysts in his brain, the doctors do not seem too worried about them but they are on my mind often.
After reading all the posts I wonder if the doctors really know much about these cysts.

Thanks for opening up and sharing your stories, it helps to know we are not alone.

Arachnoid cyst
 

Are you or anyone out there dealing with an posterior fossa arachnoid cyst---I so would love to chat with someone who is---thanks so much--hutch:confused:

arachnoid cyst
 

I have not been able to find someone that had the same type and location of a AC as I do. Mine was found in 1992. In my childhood I had strange symtoms: Heat exertion headaches, writers cramps, learning disabilities, mood problems. As an adult I got facial palsy at age 21, my depression intensified, diagnose with cervical stenosis (which I got surgery on in 1990). In the past few years I have gotten diagnosed with epilepsy, dystonia, possible meiges syndrome, vocal cord dystonia, meiniers disease, ect.... My AC is about the size of a golf ball, yet my neuro surgeon does not feel it is connected to any of my diagnosis??? I wonder how this is possible. I am thinking about getting a second opinion?? How large is yours and what are your symptoms??? Please respond ASAP---I am beyond frustrated. I will be 50 on x-mas day and I would love to have some answers at least some of my health problems. Many Many thanks for any info you can give me--hutch:confused:

arachnoid cyst
 

This is the story of my life--I have had this arachnoid cyst for years with strange neuro symptoms, but none were connected to my arachnoid. I am now 49 yrs old and have been diagnosed with a whole slew of neuro diagnosis, but the neuro surgeon DOES NOT connect any symptom to my cyst--and my research has also told me differently??? I am frustrated, as I am sure you are. I am trying find someone who specializes in this somewhere for a 2nd opinion. I not only have tremors--which are getting worse, but I also have facial palsy since 1980, dystonia, epilepsy and many other ailments. I just can't buy the fact that I have a gulf ball cyst on my brainstem, and a whole lot of problems---but no connection. I feel for you and your brother--if you find any info please keep me informed, and I will do the same. take good care, and many thanks---hutch:confused:

My cyst was diagnosed by MRI in 1996, and I had surgery less than 3 months later. But I was lucky to find a great Neurosurgeon, who believed my symptoms were connected to, and caused by the cyst in the posterior fossa.
I think you need to get a second opinion, and maybe more opinions, until you find a neurosurgeon who believes you and will help.
My experiences have been a lot different and I was able to find a neurosugeon who knows something about Arachnoid Cyst, and was willing to operate, but I live is Australia, and things are somewhat different regarding healthcare...
~Jaime~

arachnoid
 

Alot of the doctors either do not know about these cysts or they are old school-and believe they do not cause any problems and should be left alone. Sometimes they don't cause symptoms, therefore they just need to be followed to make sure there is no change. MRI is the test that should be done once a year to assure that the cyst has not grown. In my case mine has not changed, but my list of neuro symptoms is a mile long- yet the doctors still believe it is not causeing any problems???? I am having a hard time grasping this and am searching for a doctor who is familiar with these cysts. I wish you the best with your son, and as long as he is not having symptoms you shouldn't have to worry!! Take care---hutch:)

Hi all!

My arachnoid cyst was found 10yrs ago (temporal left) and untill today i cant find a decent answer is this cyst large or medium or relatively small.
On MRI report the cyst is 4.5cm x 2.5cm x 2.3cm
Ive had headaches, but vertigo and fuzzy - blurry head are present on almost daily basis.

I would like to know the possible treatments for this arachnoid cyst and also is the size of this cyst to concern in future (it didnt expanded in last 3 yrs)?

many thanks