Arachnoid Cyst - Surgery?

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.

[Colin1978]

Hello Jack,

I wonder how are you feeling now after a year of getting surgery done on your brain, I am a 32 year old male, 3 months ago a Neurologist found a cyst (Arachnoid cyst) of the size of a "Golf ball" behind my cerebellum through MRI scan. The only symptoms I got are that my right leg feels kinda numb and I feels tingling sensations, I am not sure but today my right arm also feels weird like numbed, I already went to see a Neurosurgeon and he said that I don't need no Surgery, because my symptoms are not related to the cyst, but I think I am getting worst,
my question is, should I get a second opinion? and if should I get surgery?.

Colin.

[kenknight]

I am a 31 year old male with an arachnoid cyst on my spine from t-5 through t-9. If anyone has had this problem before please tell me what I can do for this.

Kenneth

[happygirl422]

Hi Jack,

I too have been diagnosed with an AC in my right posterior fossa. I have done alot of research on this subject since and have been symptomatic for a long time and recently getting worse. I saw a neurologist this past Monday and he was such a jerk. He said of course (as I was told most do) that this is a birth malformation and that it would'nt cause all of these symptoms. I KNOW that this is what it is. What else is going to cause a perfectly healthy 35 yr old to be dizzy all the time, have memory and concentration issues, erratic hb, migraines, seeing spots, etc? I've gone to doctors for years and they've treated the symptoms only and not seen the big picture. This doctor made me so upset. He reminded me of why I had given up. He asked me if I'd like to see the surgeon and I said "yes please", so theyre referring me to one. i really hope that I do get as lucky as you did with your first neuro surgeon and they say "lets do this". i never in my wildest dreams would have conceived the notion of wanting brain surgery but i will tell you, if this is the surgery that is going to make all of this or most of it go away so that i don't have to live feeling like a hollow shell anymore, bring it on! I can stand a few months of pain to exchange for this and I'll rather take my chances than live like this forever.

[martin222]

i was diagnosed with a large posteria fossa, and mines the size of an advocado lol, scared the hell out of me, what strikes me as very funny is every time i come on these sites every one with cysts have the same symptoms as me, coincidence?? i realy dont think so, and same as you happygirl i to see spots, blue ones, i bugged my neurosegeon for 6 months n now has agreed to put in a shunt, and im very relieved, in fact i cant wait to go under the knife, ive been ill now for 18 months, ,,, fingers crossed, martin

[Helen81]

I was diagnosed with 5 AC in the frontal lobe back in 2003 and had surgery dec 2004 aged 23. I opted for the less invasive operation to drain 4 out of the 5 so I had Key hole surgery things didnt go to plan as the equipment was faulty as they couldnt see what where they were going, I suffered a bleed on the brain and had a stroke. It took nearly a year of therapy and living in a rehabilitaion centre and today Im back to being normal(ish) back at work and enjoying my career.

Today I went for a routine check on my last AC and with my usual symptoms and a few new ones (Dizziness, sickness and double/blurred vision - Had my glasses prescription changed 3 times within 18 months) my surgeon has told me that I have 3 options:
    1) Do nothing and live with the symptoms - Avoiding contact sports or banging my head as it can knock the AC and cause another mass bleed, possible severe disability.
    2) He operates and cuts the last cyst so the fluid can be dispersed but it will fill up as there is a void the size of an apple so it will fill probably within 6 hours of surgery OR
    3) he fits a shunt - Which I think this will be the way forward!!!

Im 30 now and I thought all this was sorted out. I lost 6 months of my life due to memory loss. Didnt know my family and how to spell their names, forgot there was a Sunday in the days of the week ( to this day still get the mick taken out of me and laugh about it!!) and learning how to walk talk and care for myself again, Ive come too far, do I want to take another risk! I suppose I could look at it, Life is a risk and we will never know what if until we have taken at least ONE big risk. But 2, I dont know!? At least ive got time to do research and think and discuss with family and close friends.

If anyone is diagnosed with AC the one bit of advice I can give you is talk with family but the final discision is down to one person, you!! They are going on the same journey as you and with all the help and support they give you it will make you stronger!!

Helen xx

[Chan0696]

Hi, my son (20) is diagnosed with Arachnoid Cyst near midline cerebellum after 2 MRI and numerous blood tests.  Symptoms 24/7 vertigo, concentration problem, inbalance.  Symptoms has persisted for the past 3 months and the Neurosurgeon we saw feels that it is not the AC that is causing the symptoms but rather extreme change in lifestyle (from a couch potato to army - stressful physical activity) that caused the headaches.  He also said the AC should not cause symptoms because it has been there since birth. But you are 38years old when symptoms surfaced?  My son has been out of army and resting at home for the past 3 months and symptoms remained same.  I am at a lost what to do and would appreciate your experience.

[TomMaz]

I am a 17 year old and i have had a growing arachnoid cyst my whole life. I have daily unbearable headaches, the blurry vision and dizzyness you are having, and I occasionally bleed from my nose, ends of my eyes, and ears when I sleep. I also see red spots in my vision daily. I am scared of the surgery because I may die or there could be severe complications. The cyst may be worse, which is why i'm currently seeing doctors about treatment and surgery. So I feel for you and just knowing that there are more people out there like this makes me feel a little better.