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~

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

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

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

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.


~Jaime~