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 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 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 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~

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

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.

~Jaime~

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

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~