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?
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.
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.
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.
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?.
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.
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
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!!
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.
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.
I also have a Arachnoid Cyst, I had surgery last May and still struggle with headaches. My cyst started out 8.8cm x 6.7 cm. it is smaller since the last MRI but trying to get info out of a Neurosurgeon is like pulling teeth. Before surgery I dragged my leg, I would fall backwards, forwards and complained about my vision. It took an ER trip because I thought I was having a stroke to find this large cyst. I also have trouble with sleeping and still forget things and its been a year. I am tired of the run around.
I am a 48 yo engineering professional and I had an arachnoid cyst (14 cm x 5 cm x 2.5 cm) that was diagnosed in Jan that was addressed 3/28 with a Ventricular Peritoneal Shunt. The shunt drained the cyst completely and collapsed the top of my brain into the area where the cyst used to reside. The collapse of the top of the brain into the cyst area caused bleeding that had to be drained during an operation 6/1. The doctor also closed the valve in the shunt to allow for the CSF to build back up in my brain. The shunt will turned back on 7/1 when crainial pressure was at the desired pressure. desired level. The doctor also added a low pressure drain on the outside of my brain. The collapsed part of the brain continues to be collapsed. The doctor is going to leave it alone unless something else occurs. This is hte first time in six months that I am going back for a check not more surgery. I may still need more surgery but we are crossing our fingers. I still have heads daily. There we averaging 7-9 every day all days. After this third surgery they do occassional get as high as 8-9, but they are generally 5-6.
I have always had a bad short term memory that has been getting apparently worse over the past 4-5 years. In addition, my wife states (and my children agree) that my mood switches very quickly and I lose my temper very easily. I had always been a laid back and relaxed person. I realize that this is no longer the case and I am realizing that this change is very real. But, I think that the recovery from this surgery and symptoms will dissipate these symptoms. I apologize for the long winded answer, but hope fully it helps reduce someone's anxiety.
Dr.Hyrahr Shahinian, Skull Base Institute. Treats these cyst every day, he's been on The Doctors and Ellen. Has special tools he developed with NASA to perform what other surgeons can only do via open craniotomy, via minimally invasive keyhole surgery. If anyone has info or experience with this doctor please share. His claim is that he can completely remove the cyst via his methods many times going in through a small key hole made through the eyebrow.
Found this article as I was researching AC's as my 13yr old is suffering from a 6.5cm x 3.5cm cyst. In the past 3days she has been transferred to 2 different hospitals from the ER as the other day getting ready for school she fainted in the shower after yelling she was losing/lost her vision. She has cronic headaches, see's what she discribes as "green glittering stars", has had numerous ear issues and constantly complains of dizziness.
Check out the article and decide from there...
"Devan Perez - arachnoid cyst brain surgery for teenager
Guys, this chat is really great. I thought I had a concussion from surfing in Southeast Asia and when I got back I had tons of blood work, was put on Prednisone (*****!) for who knows what and amoxicillin for a minor ear infection. We treated the symptoms but I still have had memory loss, dull headaches and fatigue... I am a teacher and I would lose the words I wanted to say when addressing the class. I am usually pretty sharp and I hate having my thoughts shut down! Haha. Anyways I had an MRI and a cerebellar Arachnoid Cyst was found. It is quite large and now we are watching it and gathering second opinions... Anyways, i wanted to get an update on overall feeling after surgery...Neurologist is calm and cool and claiming I have POst Concussion symptoms but I cant stop thinking about getting this thing out of myhead Starship Troopers style!
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.
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!
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
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.
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?
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.
Sorry for the delay in a reply, I ended up with a new neurosurgeon and had to have a second surgery because my cyst detached from the ventricles and closed up and started to fill up with protien and was growing again. I too have a short fuse and my short term memory is getting better, the problem since my surgery is the dropped foot that I woke up with after surgery and like the last time I am going through physical therapy again, I am happy that my headaches are gone for the moment. The neurosurgeon is waiting for the three month mark to do another MRI to see if the surgery worked if not a shunt will be placed, I am crossing my fingers that things are better, because I am suffering the effects from injuries from all the falling that went on before the diagnosis of the cyst-neck and lower back herniated disc and partial thickness tear in my shoulder that has become arthritic, I think I rather deal with my brain problems than be in all the pain from injuries, keeping my fingers crossed for a good follow-up
i am 29 year old male. I was just told today I have a 6 cm AC in the back of my head. My only symptoms are occular migraines (blurry vision). I average one a month for the past year or so. Do any of you suffer from migraines as well? Do symptoms get worse the older you get, and the larger the AC gets? I don't want to have surgery because of the risks involved with such little symptoms, (which dr. thinks is a coincidence) but want to know what I have in store for me in the years ahead. any advice would be great. thanks
I have had dizziness, tingling in my face, hands and feet, headaches and a general feeling of being wiped out for over 2 months now. I went to the ER after I sort of passed out, but it was more of a seizure/episode of me coming in and out of consciousness, not a typical passing out. Anyway, they admitted me and ran a bunch of tests. They did discover an arachnoid cyst but said they I have had it for awhile and it is fairly small. They tested me for MS and was negative on the MRI and although I have Lupus, they said that was not the problem. I have an appointment with a neuro at U of Chicago next week, but I'm just wondering how often do doctors blow off the cyst as nothing? I mean if there is no other logical explanation, doesn't it seem like exploring the cyst further is a good idea? I have little faith in the medical professionals in my area, which is why I am opting to go a little out town. Just curious what others experiences have been.
I hope your fenestration worked and do not need a shunt. I have since had two more operations (my fourth and fifth) in 14 months (1st surgery 4/1/12, 2nd surgery surgery 6/1/12, third surgery 7/1/12). After the third surgery, it took my about 4 months for the symptoms to go away headaches, speech issues, memory issues. Then in January 2013 I had some stomach issues that took about a month to diagnose as complications from the shunt that was draining in my stomach. The Dr removed the two shunts and replaced them with new ones in Feb 2013. Then, in June the shunts were sticking out of the top of my head every time I move my head (really gross for my kids to see). This last surgery (my fifth) has hopefully solved my symptoms. The headaches are almost gone. My speech issues (having difficulties finding the proper words) still linger. I also have issues writing (which I did not have before). I think that this is a complication from having 5 brain surgeries in a year. I am going to a Nuero Phycholigist to help with these issues. I am a Quality Engineer at a Robotics company and am having some issues with my job due to these communications. However, I am very hopeful that I will move through these issues and get better. It will most likely take about a year for me to move through these issues. I hope that you all will get into the same position as am.
Since my last post Tom I had another fenestration in December 2012, I just had another MRIand my cyst has not shrunk at all from my first surgery. I started getting the headaches again this past July (2013) my balance is unstable, blurred vision and my short temper has gotten worse, I am still waiting for the Nuerosurgeon (my second one the first left the practice and dropped my file in her lap) said at my last visit that if the cyst doesn't get smaller and the symptoms are still there that the only other option would be a shunt. I am tired all the time, gained way to much weight, the symptoms have not gone away and I can feel the pressure in the back of my head, I am light headed and dizzy when I make sudden moves. Some times I wish I could get back my old life.
I still drag my foot,(I have dropped foot) I have had two craniotomy Fenestrations there is no full cure for it, I have been in physical therapy and can only get so strong, I just had a MRI and it came back no change since post op(surgery December 2012) my cyst has not changed in size in almost three years and I still have headaches,blurred vision,unstable balance and partial seizures, just waiting on the Neurosurgeon to read the report and see what's next most likely going to need the cyst shunted, because my cyst likes to continue to grow and my body likes to attack it because it's a foreign object and the cyst fills with protein. It most likely be problematic for the rest of my life you might want to get a AFO for your foot. It will keep your foot straight and help with the dragging.
My son has had an arachnoid cyst since he was 7 months old on the right side of his brain behind the optic nerve. We found it incidentally when he rolled off the bed and we insisted that the ER do a CT scan. It was unrelated to his fall, but it was a god sent that we had found it. We went to our local Children's Hospital and we were told that our only option was to place a shunt in the cyst to drain it. The doctor had very poor bedside manner and acted as though this really was not a big deal. I get it, they see much worse on a day to day basis, but to us this was our child and it was serious. The cyst was the size of a golf ball at this time and we to were told like several people we have come across that "these things never grow."
Not true, we scheduled an MRI to make sure that the cyst was not cancerous only 6 months later from the initial appointment and it was not, which was a blessing, but it had doubled in size. When we asked the Nuerosurgeon about that response from the previous appointment, he said that they are anomalies and that they generally don't get to watch them grow. Most people do not know they have them until they are symptomatic and by that time they are already very large.
His doctor at that time was so nonchalant about the treatment that it terrified us. He said he would place a shunt from the cyst into his left ventricle, but that generally never works, so then they would go in and do another surgery to place the shunt from the cyst into the stomach. Then our son would have to have another surgery to extend the shunt when he grew out of it. Our first thought was wow, why would you recommend a surgery that generally never works and then we did the math and that meant a minimum of 3 surgeries in his lifetime. We started researching it and shunts have a lot of side affects, so the likely hood of more operations seemed eminent. To boot, the doctor refused to do anything until our son was symptomatic. He didn't know what exactly the symptoms would be if he did have them. He told us of a patient he had, a 4 year old girl that had an arachnoid cyst and it was causing issues with her pituitary gland. She was starting to get pubic hair, grow breasts etc as a result. We asked if she has the surgery will the symptoms go away, he said I don't know.
That was all we needed to know. We searched feverishly, I spoke to several parents who had used surgeons as we had to find another alternative. That is how we found Dr. Shahinian at the skull base institute. We consulted with him and he had great bedside manner. This was back in 2006.
Our son is now 10 years old. We have continued to see our local neurosurgeon knowing that we would have Dr. Shahinian perform the surgery. We always wanted to have that 2nd opinion. We saw our son's neurosurgeon a fews months ago. After a 5 minute visit with him, he said the cyst had grown a little bit, but he was still not symptomatic and that It was no longer needed to monitor it, just to call him when he became symptomatic. The Radiologist report said something different. The MRI report mentioned that there was Concha bullosa developing on the right side (this has to do with the sinus's). We had to research it, as our neurosurgeon didn't mention anything about it. We sent the MRI disk and skyped with Dr Shahinian a month later. He told a completely different story. He said in his experience the cyst is so large that it is beginning to collapse the right ventricle of his brain and if that happens he will develop Hydrocephalus . He said that our son will definitely have symptoms as a result, but it could be to late by that time. He also said that he doesn't recommend this surgery lightly, but for our son, it will cause issues. It is unnerving that our other doctor didn't mention a thing about this. Hydrocephalus is not curable.
We are looking at having the surgery performed in June of next year with Dr. Shahinian. With the new health care reform, it is great if you are going to have surgery in the state you live in, but for us this surgery is out of state and that means our healthcare reform will not cover the surgery in network. We think we have found an insurance policy that will, but there is still a lot of research to be done, as our agent has informed us that underwriting may approve the surgery, but the claims department may deny it. We are working on that now.
We have setup a fundraiser for our son to see if we can raise the funds for the surgery. The reason that I post this is to let you all know that you are not alone. We have been dealing with this for years. I know that these things grow from personal experience, I do believe that the health care profession does not have all the answers and therefore all the doctors have their own treatments and theories about arachnoid cysts. I do believe that they cause symptoms and that it is not all in a person's head and that the symptoms are not related to an ear infection, cold, etc.
I posted today to ask Sillk1 if she ever decided to proceed with Dr. Shahinian? Since we have posted the fundraiser and advocated for this route with Dr. Shahinian, several people have brought to our attention the mal practice suits, the fact that he is not a nuerogsurgeon and that the cysts sometimes return, so I wanted to get other peoples real life experience with this doctor, as we are seriously considering having him perform our son's surgery. My feeling on it right now is that he is a brain doctor, so to think he can not have malpractice suits, would be perfection, which we are all human, so none of us are. Apparently, when you perform endoscopic procedures, you don't have to be a neurosurgeon, which I found in my research. As far as them coming back, I would like to talk to some people who have had it done where enough time has elapsed to ask... did it come back or is it still gone? I feel that we owe it to our son to at least try the route with Dr. Shahinan because if this doesn't work, the shunt is still the end result. If it does... that means one operation, not tubes, no lifetime commitments to a cause. Any feedback on this doctor is really welcomed. Thanks!
im33 and jus been diagnosed wth this acachnoid cyst im so scared will I die they want me 2 av surgery but im jus so scared of evry ting I cnt walk prop blurred vision and terrible head rushes and bad anxiety im really scared plz will sum1 help me I dnt no wat to do
im33 and jus been diagnosed wth this acachnoid cyst im so scared will I die they want me 2 av surgery but im jus so scared of evry ting I cnt walk prop blurred vision and terrible head rushes and bad anxiety im really scared plz will sum1 help me I dnt no wat to do
I am 71 years old and have just discovered that I have a huge arachnoid cyst in my brain. I am sure it has been there since birth as it is quite large at this time. It was discovered incidentally because I had a fall with a concussion. It was discovered by the Cat Scan.
I have not had any major symptoms from this cyst so I guess I am living proof that one can live with an arachnoid cyst for quite some time symptom free. I suspect it started at birth. If I had not fallen down some steps, I would still have no idea that the cyst existed.
Currently, I think the surgery for the cyst has many more risks for me than continuing to live with it.
It is a difficult decision you are making, but please don't let the medical community scare you into something that is not really necessary. They certainly tried to scare me and my husband into immediate emergency action.
I seem to even be recoving from the concussion as I played a flawless piano piece just this morning and it has only been two weeks since my fall!
We were scared too--but each day are more sure that we have made the right decision.
Copyright 1994-2016 MedHelp International. All rights reserved.
MedHelp is a division of Aptus Health.
This site complies with the HONcode standard for trustworthy health information.
The Content on this Site is presented in a summary fashion, and is intended to be used for educational and entertainment purposes only. It is not intended to be and should not be interpreted as medical advice or a diagnosis of any health or fitness problem, condition or disease; or a recommendation for a specific test, doctor, care provider, procedure, treatment plan, product, or course of action. Med Help International, Inc. is not a medical or healthcare provider and your use of this Site does not create a doctor / patient relationship. We disclaim all responsibility for the professional qualifications and licensing of, and services provided by, any physician or other health providers posting on or otherwise referred to on this Site and/or any Third Party Site. Never disregard the medical advice of your physician or health professional, or delay in seeking such advice, because of something you read on this Site. We offer this Site AS IS and without any warranties. By using this Site you agree to the following Terms and Conditions. If you think you may have a medical emergency, call your physician or 911 immediately.