[Jaime_S]

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~

[labar914]

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

[Jaime_S]

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~

[labar914]

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

[Andy B]

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

[Jaime_S]

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~

[hutch]

Originally Posted by Andy B

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

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

[hutch]

Originally Posted by labar914

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

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

[hutch]

Originally Posted by labar914

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

[Jaime_S]

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~