An arachnoid cyst is a fluid filled sac that develops primarily in the uterus during the development of the brain and skull. The arachnoid membrane of the brain splits, and the split space fills with fluid known as cerebral spinal fluid. The fluid will enter the split area, but it cannot escape at the same rate as it enters. Because of this, the cyst will grow over time. The growth rate depends on many factors, but even as it grows, more times than not, the cyst will remain asymptomatic. This means that generally, an arachnoid cyst will not cause any symptoms.
Arachnoid cysts can grow anywhere on the brain with the primary areas being the side of the brain, and the top of the brain. When a cyst forms on the back of the brain, this is called a posterior fossa arachnoid cyst. A posterior fossa arachnoid cyst can create pressure on the brain stem and the cerebellum. These are extremely vital organs of the brain and they both produce tremendous functions that are required to live.
The brain stem controls a lot of our everyday functions that we do not even think about. One thing it controls is our body temperature. It controls our diaphragm for breathing, and it is where our hunger and thirst are controlled. It is also the path in which all our nerves leave the brain and travel throughout the body. The brain stem controls our pain, it is also where the nausea center is based, and it plays a role in the regulation of our hearts.
The cerebellum; on the other hand, helps control our balance. It plays a role in the reflex of our muscles, and plays a major role in our motor skills. Both parts of the brain have their very specific tasks, and when either one is compromised, it can reek havoc on the entire body.
If treatment is needed for an arachnoid cyst, usually the first choice is a fenestration of the cyst. This means going into the brain with a wand and opening up any walls that may have formed inside the cyst. These walls trap the fluid inside the cyst. The idea of this procedure is to get all the cerebral spinal fluid flowing in and out of the cyst efficiently so that the cyst does not continue to grow. If this procedure does not work, a neurosurgeon may decide to put a shunt in. A shunt helps to keep the cyst draining and not allow fluid to build up inside. If the cyst is small enough and in a space on the brain that is not too dangerous to remove, the neurosurgeon may be able to remove it altogether.
Symptoms can show themselves in many ways; from balance problems, nausea, vomiting, headaches, even seizures. Many cysts are discovered on accident when having a scan for another reason. They can be seen on Cat Scan, but the preferred diagnostic test for a brain cyst, is an MRI.
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I have AC 2cm in Posterior Fossa. The referred neurologist saw the MRI report and films and told me that he doesn’t see anything and then it is nothing and it doesn't cause my problems. Hmmm, I can easily see it on the film and it looks like a kidney and it is pointed by radiologist. I have horrible headaches all the time left side of my head. They are literally all the time day and night. Neurologist even doesn't want to fallow with radiologist recommendation to repeat MRI in 3 month to check if it is not growing? He told me I have migraines and prescribed Topamax. So I'm on Topamax. This med is not helping at all. I’m taking it but I’m having the same headaches. I called his assistant today when should I see some improvement but not answer. I really would like to get another opinion. But I don’t know what to do because I have the feeling everybody think I’m having migraines. If so, something should help but nothing I have tried helped till now, so do I have migraines or my cyst is pushing on something in my brain causing this horrible headaches and pressure on my left ear?. I don't know. I don’t know where to go. I'm afraid that I'm gonna waist time and money because I have a feeling nobody treats me seriously. So, I have BIG request if somebody on this forum know the doctor I can see with my Arachnoid Cyst someone I can visit and this doctor is not gonna say It is not causing your problems but at least - “I don’t know but let observe it and treat your pain” I would be more than happyI and will appreciate this information very much. I'm from Dallas TX area, specifically Plano. I just need neurologist, neurosurgeon ….
March 22, 2010 - 3:08pmThank you,
Grazyna
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Hi Grayna,
It sounds like you are going through a lot. I am sorry that you feel so bad and aren't getting the answers you need to get rid of the headaches. If I had to recommend anyone to you, especially because you are alredy out west, I would recommend Barrow's Neurological Center, specifically Dr. Robert Spetzler. What you can do is call them and get the address for where you can send a letter and your MRI to him to read. He will charge you a fee to do this, but it is so worth it. I want to say it is like $100.00 for him to reveiew your films (without you there) and give you his opinion. He will have a resident call you to tell you if he'd like to see you or what. For me, he looked at my films and his resident called a couple of days later and toe me I needed (or Dr. Spetzler recommended) brain surgery.
I had sent him a letter describing all my symptoms to go with my films, so he knew exactly what I was dealing with. I then had to travel to Phoenix to see him, and my surgery was for the very next morning, the day after I saw him for the first time. Although that was very different from any other doctor's way of doing things that I'd experienced, it was still an amazing experience because he understands these cysts well. He is very intune with the brain, arachnoid cysts, and what they are capable of. If anyone will understand and know how to help you, it is him, Dr. Robert Spetzler. For me, the 8 hour drive from NM was so worth the trip. I would have traveled any distance to see him, knowing now, what he is capable of, and what he did for me. Other than him, I am not familiar with other neurosurgeons out west, but you can do your research for your state or your area. If you need help, let me know.
Good luck and don't give up. You can find help for your cyst. You just have to have faith and be persistent. Never give up!
Good luck to you...you are in my thoughts!
March 22, 2010 - 4:35pmMaria
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Hi Melanie,
I couldn't agree more with eveything you said about recovery! It is so easy to think of brain surgery as other forms of surgery that it can be a six or so week process to recover. Even other types of surgery can take months to recover from, so it only makes sense that brain surgery is a long road. I too, was shocked at how long it took to get a lot of the areas of my life back in working condition. It seems like every part of my body - not just my brain - was affected by the surgery.
There is a longterm general weakness after a crainiotomy and cyst fenestration. You describe the procedure very similar to the way I do, with your brain basically being a computer and you are going in to have it rebooted, even taken apart in a sense. Because it is what controls the rest of your body, your body can be slow to reboot.
I had a lot, and I mean "a lot" of fatigue after both of my surgeries. I had a lot of poor muscle control and general malaise. I had to rest a lot, got headaches a lot, and I had my mother there to help with my very young boys for three weeks after the surgery. I only had help for one week after the second surgery. After that, it was all me. I would get so tired, dizzy, headaches, I mean grocery shopping was a huge feat for me. And what I grew to realize and succumb to was that there wasn't anything I could do to change it, or speed it along...except maybe rest. I just went a long for the ride and stopped having too many expectations from myself. I went with the flow, so to speak and let my body do what it was going to do. It seemed like the less I thought about it, the quicker I would notice something coming back. Like, when I quit thinking about how hard it was to prepare dinner, how tired I got, one night I made it and did not feel very disoriented or fatigued, and it surprised me. And suddenly everything was like that....grocery shopping eventually wasn't so hard, I could drive further distances etc. I quit focusing on it, just did things, and gradually I was closer and closer to my old self.
It does take a long while to fully recover. I think I was well over a year out before I had recouped from my fenestration and then (4 months later) the shunt surgery. It took a long while to feel "normal" again. Actually, truth be told, I still do not feel "normal". I still have trouble with fatigue, head pain, dizziness, muscle weakness, eye trouble, balance issues etc. But these symptoms are now mostly caused by my chiari and brain sagging. So no, I am not the "old" person I was, but as far as recovering from the surgeries itself, I did.
I think patience and lowering your expectations of yourself are biggies. Asking for help is another. As Pat said, no one is going to just assume you need your toilets cleaned unless you ask. And most friends and family are willing to help as long as they are asked.
Take care, get lots of rest, and just try to go with the flow. I think you will surprise yourself at how suddenly, old feelings and energy levels return when you put it out of your mind - as hard as that sounds to do.
Good luck with your recovery! My thoughts and prayers are with you!!
March 12, 2010 - 3:27amMaria
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I have mega cisterna magna with a subarachnoid cyst. It has remained 3x4cm until this last MRI, and now 5.2x8.6cm. I have a history of migraines and over the past 5 months they have worsened along with eye weakness. Should I be concerned with the growth and do you think this may be contributing to my increased migraines?
March 10, 2010 - 7:01amThis Comment
Anon - Thank you for writing. Have you discussed the changes in your migraines and the eye weakness with your physician? Pat
March 10, 2010 - 5:06pmThis Comment
Hi Pat, to update you, my physician has referred me to a neurosurgeon on 3/29/10. Will update you again after my appointment. Thank you for your concern.
March 22, 2010 - 5:02pmThis Comment
You're very welcome, and we will be here for you after your appointment. We wish you the best, and that you find relief.
March 22, 2010 - 5:38pmTake care, Pat
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Saw the surgeon, he's not convinced the cyst is causing my problems (didn't have prior MRI for comparison confirming its growth), so sending me to an opthamologist who'll check for pressure behind my eyes (this appt isn't until late next month). As I'm typing this, I JUST WOKE UP with my daily headache/pressure, eye pain, fatigue and sore throat...something has to be going on, no one should have to feel like this after sleeping all night! Any comments/suggestions are appreciated...help!!!
March 30, 2010 - 4:07amThis Comment
Melanie - I truly appreciate the time and careful thought you put into your comment. I also hope you are being kind to yourself as you go through your own recovery and all of the adjustments that come with a major surgery like yours. It's hard when our "normal" is completely disrupted, and it's perfectly natural to think about doing things in terms of the way we "normally" do them, but during recovery that just isn't possible. I'm glad you were able to put what you need in words. You mentioned before that you have a good support system, and I hope you're letting others know how they can help. I know from my own experience that unless you mention something like..."It would really help me if you would clean the toilet for me, I just can't do it myself"...people just aren't going to think about those things and will instead worry about how you feel and not realize what you feel bad about is all the things like dirty toilets you can't get to! :-)
March 9, 2010 - 5:28pmTake care, and keep in touch, we wish all the best for you in your recovery. Pat
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Hi Maria - Pat -
My recovery is going very well, but it is a very, very slow process. Although my surgery was "easy" compared to what the surgeons thought they were up against, it still does not make the recovery any easier. I just wish that i had known the extent of the recovery process from brain surgery - i certainly would have prepared better. I did have my mother staying with me for the first two weeks, but i certainly could have used someone for the next three.....Shoot. I can still use someone to help me. I have mornings where my legs can't hold me up. I have to take a few steps to get them to work right. After that it gets progressively better. By afternoon - it is a chore just to hold my head up. Walking across a room feels as though i have run a marathon. Mornings are defenitely better. I am also caring for my 1.5 year old grandson. Thank goodness by the time he gets home from daycare my husband is home. Fatigue? I am told that i have a good 8-10 months before that will go away. That is a combination of the surgery, as well as the anesthesia. (it stays in your body for a year and the effects gradually reduce) I am the kind of person that is go go go. Well right now i am stop stop stop! I am working but only a few hours a day. Me, the "i can do anything" person thinks that i can jump right back into my job as if nothing happened. I could not have been so wrong. I HAVE TO TRAIN MY BRAIN TO MULTI-TASK AND FOCUS ALL OVER AGAIN. It is frustrating to say the least - i am a perfectionist. Riding in a car - very uncomfortable after an hour. Driving - worse. Good thing i only work 10 minutes from home. Sudden moves and turns of my head results in a very bad headache (muscle related). I have to re-think the way i go about my day.........
March 9, 2010 - 6:32amThis surgery has been life changing. Not only in the respect that i could have died, but in the respect that my body is not functioning as it used to. You never really appreciate what you have, what you able to do, or how you live, until it is marred in some way, shape or form. If anyone is going to go through this surgery I urge you to make sure you realize the extent of not only the surgery but the RECOVERY as well. This can impact not only your life, but the lives of those around you - make the necessary arrangements, make sure you have people available that will be willing to help you. DO NOT THINK THAT YOU ARE GOING TO JUMP RIGHT BACK INTO YOUR ROUTINE. This is not going to happen and if you do, you are only going to hurt yourself. Ask other members of this forum about their recovery - take the good with the bad and combine everything - there is a very good chance that you will fall somewhere in-between. Do NOT underestimate the seriousness of brain surgery - of any kind. remember - your brain is your body's computer. Your computer has a virus and it has to be removed. In order to remove this virus, your whole computer has to be exposed and every component inspected to be sure that it is not infected. Afterwards, it is put all together and it has to be re-booted. Well, your recovery is your "re-boot" only your brain takes a little longer than a regular PC! Remember - it has been used to that extra "baggage" it has been carrying around. Well, now it isn't there and it has to compensate for the vacancy. TAKE YOUR TIME getting back into your daily routine. Shoot - it has been almost 6 weeks since my surgery and i STILL have trouble doing laundry, cleaning my house, standing for long periods of time, etc. Ask questions of your surgeon. Questions i wish i had asked prior to going into this but i was so overwhelmed with the diagnosis........
Take notes on what you discover from other people that have gone through the same thing. It will be beneficial to anyone that is helping you during your recovery, to know what you are capable of.
I wish anyone that is going through this the best of luck, Blessings and God Speed........
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