NeuroTalk Support Groups - Arachnoid Cyst

NeuroTalk Support Groups (https://www.neurotalk.org/)

- General Health Conditions & Rare Disorders (https://www.neurotalk.org/general-health-conditions-and-rare-disorders/)

- - Arachnoid Cyst (https://www.neurotalk.org/general-health-conditions-and-rare-disorders/18964-arachnoid-cyst.html)

Quote:

Originally Posted by Andy B (Post 132709)

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:

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~

Quote:

Originally Posted by Jaime_S (Post 541733)

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.

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:

Quote:

Originally Posted by Jaime_S (Post 95148)

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~

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:

Quote:

Originally Posted by labar914 (Post 127097)

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

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~

Quote:

Originally Posted by Summertime (Post 543015)

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