Arachnoid Cyst - Surgery?

[JT_Seven]

I am a 38 y/o male that was diagnosed four weeks ago with a 4.1 cm x 2.6 cm cyst in the posterior fossa of the right cerebellum. I had been feeling nauseaus, had acute vertigo, blurred vision and concentration problems that brought me to the ER.  I thought I was having a stroke.  A CT Scan revealed the arachnoid cyst. The ER doc said the Radiologist felt that the cause of my symptoms was an inner ear infection and not the cyst.   I have had many sinus problems (but never inner ear) in the past but NEVER these acute symptoms like these in all my life.   To date, the vertigo, nausea and blurred vision has persisted (have in fact become milder) but now I seem to have small muscle spasms and tingling in my extremities.  

I have followed up with a Neurosurgeon who said that the cyst (given the MRI) was not life threatening but some of my symptoms (not all) were indicative that the cyst had become symptomatic and most possibly may become a a bigger problem in the long term given its location in the Brain.   He's recommended surgery and said the procedure was relatively simple for Brain surgery (easy for him to say) and produces favorable results in most people. He does fenestration of the cyst in a procedure that lasts about one hour.  

I have followed up with a second Neurosurgeon who reviewed my MRI and told me that the cyst would not grow any further and has not and was unlikely to cause any dangerous pressure to damage the Brain during my lifetime.   He was less inclined to recommend surgery.  However, he did say that he could not explain away my collective symptoms as non-cyst related because they did not indicate inner ear problems as first suspected and I have no other medical problems.  He said that if the symptoms persisted and negatively affected my lifestyle, surgery would be the way to go because the only way to definitively rule out the cause of the symptoms as cyst-related was to in fact have the surgery and see if the symptoms go away.  

I'm trying to do the cost-benefit analysis of getting the surgery.  I don't want to just jump into surgery and am nervous about the prospect of complications of having the procedure (however "simple").   However, I can't just grin and bear the symptoms that I am experiencing and wonder if i will in fact benefit by going under the knife.  

Can anyone tell me - when is it practical to consider surgery?  In most patients is it as simple as having the surgery and seeing how it goes?  How long is the recuperation? What has been the overall prognosis following the procedure? Do the symptoms gone away? Are there any secondary complications (besides the apparent risks of surgery)? Do the cysts generally return?

Any advice would be appreciated.  Thank you.

Jack

[ajwalsh33]

Jack - I read with interest your post from May '09.  How did you decide to proceed?  I just found out yesterday that I have a 4CM arachnoid cyst on my posterior fossa as well.  This is in addition to a Type 1 Chiari Malformation...don't know which is causing my problems yet.  

I'm curious to know what path you pursued and how it has worked out.  Thank you.

Andrew

[JT_Seven]

Hi Andrew.  Following my post in May 09, at the recommendation of my Neurosurgeon, I had gone to see an ENT in June to rule out any inner (vestibular) problems that might be causing my dizziness, nausea and equilibrium problems.  I didn't want to rush into surgery for fear that it may not correct my problems (or maybe make them worse).  My ENT ordered a battery of tests, which in the end pointed to the Cyst as a cause of my problems.

Feeling that my symptoms were too much to take and live with, I decided to opt for surgery.  I had a craniotomy and cyst fenestration in July performed by Dr. Saahi Ghatan at Lennox Hill Hospital in NYC.  The surgery lasted about 2 hours and I was in the hospital for a total of 3 days (one in the ICU).  I spent about one month home from work recovering.  I had some mild pain and headaches along with a plethora of mild to moderate symptoms for about the first two months, not to mention feeling wiped out after only a couple of hours of regular activity.  I was pretty worried in the begginning, but I am now at the three month mark and am happy to report that I feel good, relatively symptom free (no nausea, dizziness, vision problems), barring some problems with short term memory and concentration.  I am told by other people who've had the surgery that it takes about 6 months to a year to get back any deficits relating to the surgery.

In any event, I am happy with the results from the surgery (knock on wood).  I am markedly better now than before the surgery.  Again, it's been only three months, but I am optimistic that I will only improve going forward.  I was lucky enough to find a fantastic Neurosurgeon who specializes in treating ACs and was patient enough to allow me to take my time to do my research to feel comfortable with going under the knife.

How have you been feeling?  What are your symptoms?  Since most AC's are not life threatening, I would not rush into anything.  I'm sure you were shocked by the finding and just want to get the thing out of your head.  I was totally freaked out in the beginning.  My recommendation to you is to take your time.  Don't panic.  Get a bunch of opinions from Neursurgeons who have experience treating AC's and do your research.  You have to weigh the cost-benefit of surgery versus living with the symptoms (and your long term prognosis).

Feel free to ask me any questions your might have.  
Good Luck and Take Care.

Jack

[lucys_worried_mom]

My 20 year old daughter underwent a craniotomy one week ago to fenestrate an arachnoid cyst that was deteriorating her optic nerve.  She is developmentally challenged, but very high functioning and on the austism spectrum.  Behavioral changes 2 years ago led to an MRI, which led to an incidental finding of the cyst.  Subsequent follow-up exams over the past 2 years had shown that there had been additional deterioration of her vision and surgery was recommended.  After consultation with 2 top neuro opthalmologists and 2 neuro surgeons, we scheduled the surgery.

We were told that she would experience pain and bad headaches post-op.  It was expected that she would be in the hospital for 3-4 days, take approx 2 weeks to be back on her feet and 1-2 months before she gets her full energy back.

Well, she was out of the hospital in 2 days and hasn't had to take as much as a tylenol for pain.  Remarkably, she was sitting up in recovery (against orders) and trying to leave the ICU to go home, just a few hours after surgery.  She didn't sleep and was so agitated about being away from home, that the team felt she would be much better off recouperating at home.  

Now home, she is still suffering from severe sleeplessness and anxiety.  She's only getting about 1-2 hours sleep each day and is hyper focused on the staples in her head.  She told me today that she hasn't yawned in 3 days.  All I want her to do is rest, but she can't seem to do that at all.  She hasn't had a reasonable amount of sleep since she was under anesthesia.

The doctor believes that this can be a manifestation of the anxiety related to her autism, coupled with the trauma of surgery and being on steriods for the past week.  I am hopeful, now that she's off the steriods and can look forward to the staples being removed next week that she'll be able to sleep and rest.  Ultimately, I think she's just going to crash and sleep...hopefully, very soon.

So far she hasn't been enjoying the basic things she loves...TV, Video Games and talking on the phone with friends hold no interest to her right now.  She's running on empty and does nothing but some photo imaging on the computer and obsess about the staples.

She's got some minor memory issues and is much more quiet than is typical. That could also be from lack of sleep.  I'm her mother...I worry.  But, I won't rush to judgement -- it's only been a week.  I just want her to sleep for a while.

By all accounts, the surgery was a success.  She is getting her strength back, is healing nicely and it seems as though some of her vision has been restored.

Emotionally...I believe that she has a long recovery ahead of her.