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

[raceman888]

I had symptoms of lightheadedness and dizzy. Had ears checked as I have had tinnitius for 15 years and doc did MRI and found Cyst at bottom of brain pushing up. She felt it had been there since birth and probably not causing my lightheadedness. Well I had the surgery and 3 months later still am not able to work due to dizzy off an on. I currently feel pressure in ears as if fluid and I think this is causing dizziness. Fri I am going back to doc to check for 2 problems that could be causing this. And I decided to start taking sinus meds as I think allergeries are causing this pressure in eardrums and that is causing the dizziness. I will keep u posted. Glad to hear u are fine. For all out there that are getting or thinking of getting this operation I watched it on Youtube first. The operation was no problem only the cathiter removal afterwards hurts worse.

[mslady3012]

Hello to Mrs. Jeanean419,

I read your post, you said you dragged your right leg before your surgrey, does that mean you no longer do that after you had your surgrey?  I do the same but I drag my left.  I was told I have foot drop caused by my cyst on my brain.  I was told I have 3 and I never new I had them.  One is so large they say it cover's a third of my brain.  I just developed foot drop afew months after I had my baby in 5/11/12.  By Jan. of this year 2012, I noticed my foot was dragging and dropping when I walk.  I had no other indications I just turned 30 and I never knew I had this.  I walked completly normal until about Jan. of this year 2012. I don't know what to do, I'm praying and researching.  I was told it was to risky to do surgery, if they touch the wrong thing, I might not walk, talk, or wake up.  I was also told not to hit my head as it may leak. I was told to just monitor it and come back in May 2013 for a followup MRI, if I have any new symptoms contact them.  I don't know if it will cause other issues by waiting.  What kind of surgrey did you have done, and did it stop you from dragging your leg?  

[Rocdan]

Hi Everyone, I have been feeling ill since January 2010 the major symptoms being chronic headache, visual dysfunction, cognitive dysfunction, fatigue and muscle pain. These symptoms have severely affected every aspect of my life. An arachnoid cyst was discovered last year by MRI in the right hand posterior fossa deforming the cerebellum in that region, it is approximately the volume of a small chicken egg with an odd shape. The radiologist’s comments were that it was not clinically significant. I saw a neurologist around 5 months ago who also said the cyst was not responsible for my symptoms.

I initially took their word for this but have recently done a little research into arachnoid cysts and have found there is a wealth of information to suggest that this arachnoid cyst may be responsible for my ill health. So I am struggling to understand the radiologist and neurologists opinion on this. I also had a CT scan about a year previous to the MRI scan and there was no mention of a cyst in the report from that scan.

I had a meeting with another consultant last week and told him my concerns. He is going to raise the issue with the chief neurosurgeon at Dundee, and hopefully soon I will be able to discuss the possibility of an operation to remove/decompress this cyst.

I found these following three papers particularly convincing regarding the symptoms associated with arachnoid cysts and there subsequent improvement after operation on the cyst. There is also mention of different techniques of cyst surgery and there pro’s and con’s.

Erdincler, P. et al,  1999. Posterior  fossa  arachnoid cysts, British Journal of Neurosurgery, 13(1), pp.10-17
Samii, P. et al, 1999. Arachnoid cysts of the posterior fossa, Surgical Neurology, 51, pp. 376-82
Helland, C.A., et al, A population based study of intracranial arachnoid cysts: clinical and neuroimaging outcomes following surgical cyst decompression in adults, J Neurol Neurosurg Psychiatry, 78, pp. 1129-1135

I t was reassuring to read on this forum that I had a lot symptoms in common with other cyst sufferers, I wish everyone good luck in their pursuit of good health.

Conrad

[Tomr64]

Jared,
I can only speak from my experience with my doctor.  I live near Boston, MA, USA.  We have some of the best doctors and hospitals in the world.  But I have reasearched and spoken to other doctors in other regions of the country to get some feedback regarding the treatment my Nuerosurgeon proposed prior to having the surgeries.  (NOTE: I was helped by the fact  that one of my brother's was a Nursing Director at a hospitl in another state.  That helped me contact more Neurologists and Nuerosurgeons for remote second and thrid opinions.)

Those doctors (4 doctors) all stated that they agreed with my doctor and would only recommend surgery if symptoms were present.  The mere presence of a cycst is generally not a good reason for surgery.  There are significant risks anytime a doctor cuts into any part of your body, especially the brain.  Most people that find that they have cycsts in thier brain find it when they are not looing for it.  They typically go into the hospital for some unrelated issue (concussion, car accident, fall, etc..).  They have an MRI or a CT scan and find out they have a cycst.  These patients, if there are no symptoms get monitored on a regular baiss (yearly) by getting an MRI to make sure that there are no problems.  Most of these people never have symptoms and never have or require surgery.  People with symptoms that are severe enough have surgery.  
   I had double vision, speach issues, and memory loss.  I am not certain if my surgeon and the doctors I consulted are outside of the norm (which I do not think that they are) do not necessarily consider headaches as a symptom.  If a patient only has headaches, the doctor's may not be inlcined to operate.  If the Nuerosurgeon can tie your symptoms to the abnomaly in your head, he\she may most likely undertake surgery.  
   All of these comments are based on my experience and my perception of the events and doctor's opinions. Your experience may differ and your doctor may have a different opinion than my doctor.  However, I hope that this (very long winded answer) may somehow in some small way help you in feeling comfortable with your decision.  ALWAYS REMEMBER IT IS YOUR DECISION, NOT THE DOCTOR'S.   Good Luck - Tom  
  

[jared220]

Hey Tom,
Thanks for the feedback. I have doing a lot research on my own and I have been finding some mixed results that have me going back and forth about what to pursue. I am lucky to meet with a Nuerosurgeon for a second look this week. I am pushing through the "fog" every day but myself , friends and family are trying to make light of it all..joking around yet everyne is learning about it at the same time. Exercise is hurting now, and that is killing me the most. Mine is in the back of my head, pushes on my cerebellum, yet i have little to no balance issues. My main problems are the pressure. I feel pressure in my ears, loud noises really irritate me. I get chills shooting down my body when hearing really loud noises at the school sports matches or a concert..so lately I avoid them. I require a lot of sleep. The brain fog and pressure are confusing and memory loss is present but again, I can "push" through.

What I dont want to do is "treat the symptom". Give me the reality of living with the thing or get it out. I consider myself lucky to live in a country that has the medical technology to find the cyst and if I am very lucky, treat it. I have much respect for all others on here, sharing stories, ideas, and fears. We all just have to remember to count our blessings, navigate our way through the fog (backed by those we keep close), and suffer through the pain with hope, love and patience. I will keep you all posted with my progress!  

[Tomr64]

Jared,
It has now been three months since my 3rd surgery in a four month period.  The post surgery headaches was significantly more intense than the headaches prior to the surgeries.  The first two surgeries had difficulties (my brain collapsed into the areas where the  (14 cm x 5 cm x 2.5 cm) cyst was prior.  This caused bleeding that reulted in my second surgery.  After I recovered from the second surgery, I needed one more surgery to install a drain on the outside of my brain to drain the CSF without collapsing my brain again.    Again, the headaches have been veritually around the clock at a level of 5-7 pain level since January.  
   Now that I am 3 months post the third surgery, the headaches and other sypmoms are decreasing in the frequency and intensity.  The doctor says that the headaches should go back to "normal" in about 6 months.  The stuttering and inability to say the word that I want should dissipate in about a year.  The memory issues should clear up in about 2 years.  

I do not want to scare you.  Your symptoms and side effects most likely are different.  However, as bad as this experience has been, I am getting past this very difficult period in my life.  I hope you get past your difficulties as soon as soon as possible.