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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Hi,
I am so sorry for all you are going through and dealing with. It sounds like you are just dealing with so much.
You know, anything is possible. I started the brain cyst forum on here because I had noticed there wasn't one, and since....so many people writing in it seems like there are just so many different issues with brain cysts. Although some people can have some similarities in symptoms, I have noticed that most people have different symptoms. Just so many factors involved in why the cyst causes one set of issues for one person, and a whole other set of issues for someone else. I think this is partly why drs. don't think brain cysts cause problems for people.
But let me tell you....brain cysts are real and the symptoms they cause....are real. If it were me....I'd see a good neurosurgeon.....and more than one if you have to, to find the "one" who can help you and is willing to help you. One who believes your cyst is causing your problems.
Let me tell you that one thing you may want to try, is to stack your pillows when you sleep. I had breathing issues too, with mine, getting terrible sleep apnea, and even difficulty breathing during the day, while upright. My cyst is so large, it takes up over 1/3 of my brain compressing my brain stem and cerebellum. It was putting pressure on the cerebellum and brain stem, and altering the functions of my body, that these 2 parts control.
I started sleeping more upright.....on a stack of pillows. Not just a straight-stacked, stacked, but more inclined. Putting one pillow on top of another in a way that it was a gradual incline, but high enough that the cyst wasn't putting so much pressure on my brain stem and cerebellum. It helped with my breathing, the dizziness I was getting while laying down and other things. You may want to try it.
You can also read my book, "It's all in Your Head," to see what I went through, what problems I dealt with, and how I dealt, etc. Here is the link - below. Everyone that has read it and contacted me about it, whether it is them that has a cyst or loved one, said it helped.
http://www.amazon.com/Its-Your-Head-Maria-McCutchen/dp/1613460716/ref=sr_1_1?s=books&ie=UTF8&qid=1365364137&sr=1-1&keywords=it%27s+all+in+your+head+maria+mccutchen
Like I said, brain cysts are tricky. What one cyst may cause for one person, may cause a whole different set of symptoms for another. Brain cysts can be multi-septated, meaning they have all kinds of tissue walls built up inside, and this causes them to grow and the CSF to not be able to move around inside them, freely, and get out of the cyst....flow its normal channel. It gets trapped and causes the cyst to grow and put pressure on the different areas of the brain.
If it were me.....I would go to a neurosurgeon who is very familiar with brain cysts - arachnoid cysts. See if you can send them copies of your MRI ahead of time, to review. Make a list of your symptoms and add to it as needed. Also, start a diary. Keep track of your symptoms, listing what happened (symptom), what you were doing when it started....were you just getting out of bed, walking, eating, what? Mention how long it lasted and how it stopped....what made it stop etc. Whatever you can. This way it can show a pattern or help you keep track of what happened and when.
But do try to get my book so you can see someone else's case, see if there are any similarities etc. Let me know if you have any questions, and please......keep me updated. I will be interested to know the outcome. You can reach me easily at: [email protected] or my site....www.arachnoidcystsupport.blogspot.com
Good luck to you. I will have you in my prayers.
Sincerely,
Maria
April 7, 2013 - 12:57pmThis Comment
Hi,
I am awfully sorry to hear about all your troubles. You have really been through it lately it sounds like. There is a lot I can identify with and some I can't, but to start, I also have a posterior fossa arachnoid cyst. Mine is "very" large and takes up a third of my brain or more. It sits on the back of the brain and wraps around to the right. It has severely compressed my brain stem, cerebellum, it's compromised my 4th ventricle, my pituitary gland, my optic chaism (where are the optic nerves pass), and has shifted my brain up and forward.
My doctors, too, did not want to believe the cyst was the cause of all my symptoms. My symptoms started out with some confusion....like I could be in the middle of a conversation and my mind would just drift, and I would space out. Then the symptoms went to an achiness feeling in my head, especially at the back of my head. I couldn't rest my head too long on the back of the recliner or the back of acar seat. I started having this fullness feeling in my head, like I was under water and was always walking around shaking my head, trying to clear this fog. My heart, too, would beat weird....fast and felt out of synch. At night, I would wake up completely numb....every inch of my body was numb and my ex-husband had to push me over a little to get feeling back into my limbs. I felt like I'd been stricken with Polio or something while I slept. I dealt with terrible sleep apnea....I'd wake up gasping for air....choking etc. So frightening. That eventually moved to having difficulty breathing during the day while upright. All doctors wanted to tell me the same thing....they are normally asymptomatic and don't cause problems. That is not true. Brain cysts, no matter where they are, can put pressure on whatever part of the brain it is sitting and growing on. If it's on the back of the brain, like yours and mine....it can put pressure on vital organs such as the cerebellum and brain stem. This is dangerous. I found a surgeon in Phoenix, Dr. Robert Spetzler at Barrow's Neurological Inst., who knew all too well what these cysts can do and told me that I needed surgery. If I didn't have it, I was headed down a very "wrong road." So I had it and he fenestrated it.....knocked down all the walls inside the cyst. That may be something else you haven't been told. These cysts are good for building walls inside (tissue) like a honeycomb. Cerebral spinal fluid finds its way into the walls but cannot get back out, and this is how the cyst grows and builds pressure. They have to fenestrate the cyst (knock down the walls with a wand), and get the CSF communicationg with the rest of your CSF, normally. Doctors waited so long to treat and operate that my cyst just got too large and despite the surgery, it continued to get under pressure, so they had to put in a shunt. I wound up with more complications with the shunt, because the doc in my city of Albuquerque, did not care about me, listen to me, help me, or anything. So now, I have more problems. I wrote my book about my experience and it is now available, called, "It's all in Your Head." My memoir of living with the cyst and the road I had to travel. Maybe you'll look into it and hopefully will help you.
I would pursue the cyst. Don't give up. There is a doctor who knows about brain cysts, even if you have to travel some to get to him/her, like I did. These cysts can reek havoc on your brain...continue to grow and cause more problems. The sooner you find someone to believe you, and help you, the sooner you can start getting some relief. Please keep us updated. Remember....neurosurgeons are the doctors that deal with brain cysts....not ENTs, general physicians or neurologists. Stay on the hunt for a neurosurgeon and many of them will let you send copies of your recs to them to view your films etc. That is what I did....I mailed my surgeon copies of my medical recs and MRI. He viewed them and determined right away that I needed surgery....he called me and told me over the phone....then....I went to see him in Phoenix. Anyways, look into my book. See if you can get any answers from it or at the very least...comfort, knowing you are not alone. And you're not!
Keep me updated.
October 1, 2011 - 5:06amMaria McCutchen
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Hi,
I hate to hear what you are saying because it brings back so many memories for me. I have a posterior fossa arachnoid cyst that is at least a third the size of my brain. It takes up the whole back portion of my brain growing upward, and wraps around the right side of the brain. On film, you can't even see the whole back portion of my brain, yet....doctors kept telling me that my cyst was asymptomatic and should not be causing my symptoms and problems. It took going to several doctors and being told the same thing before I found the one doctor, the one neurosurgeon who believed, knew and understood these cysts. I had 2 surgeries by him, the first to fenestrate the cyst and the second to put in a shunt. My story goes on and on. So I decided to write a book about my experience.
I wrote about my experience...what I went through; all the things that went wrong due to lack of medical treatment and doctors not listening to me nor believeing. My book is called, "It's all in Your Head," which is available to get now...just pull up the title and it will lead you to the publisher where you can get it.
I have been told by the AC foundation that they have never seen or known of a book to be written about someone's experience with a brain cyst, and I hope it will encourage, empower, and help many people....anyone diagnosed with a brain cyst, whether it be a smaller sized cyst, to a large one like mine. I hope to help anyone who is not being listened to, or believed and even those who have gotten treatment but need encouragement. I hope you will check it out and have the opportunity to read it. It will hopefully encourage you to keep pursuing treatment, because if you think your symptoms may be cyst related...all that you are going through, then pursue it. You need to keep searching for that doctor who knows and understands brain cysts. It does not matter the size...because although many "are" asymptomatic, not every cyst is. There are a lot of them that do cause problems for patients. It can depend on its location and what it's putting pressure on. Size does not matter.
Keep us updated, but don't give up. See several doctors if you have to, and look into your insurance and see if you are allowed to schedule with a neurosurgeon without a referral. If so, see him. Take your films with you and tell him exactly what's going on, and that you have heard that not all cysts are asymptomatic. You've heard of people who have had problems with their cysts. Be as descriptive as you can about your symptoms. If you have to go through a neurologist first to be referred to a neurosurgeon, then go that route. Tell them that you want to see a neurosurgeon, that you believe your cyst is the culprit of your symptoms and ask for a referral.
Keep us updated. I'd like to hear how you fair and what progress you are able to make.
Sincerely,
Maria
September 1, 2011 - 9:12pmThis Comment
Anonymous
September 1, 2011 - 7:16pm2 weeks ago I began having mild headaches and then one night as I laid down to go to sleep I experienced a severe pain in the back of my head which within minutes become unbearable which eventually led to a trip to our small town hospital. After being treated with mega pain medication I was sent home and sent for a CT scan the next day. The scan didn't show anything other than I have 2 small arachnoid cyst posteromedially in the right posterior fossa. I was told it was basically nothing and my headaches are probably stress related. The next day I experienced the same severe pain again and another trip to the hospital and again treated with drugs and sent home. My mild headaches have continued ever since and I dread going to bed at night for fear of another major headache. I feel like I am an inconvenience to the Dr's and don't know what to do.
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I am looking for neurologist in the Atlanta area who specialize in this type of diagnosis. I have a cyst in cerebellum and have been to 4 different specialist. I keep being told I have migraines. Only the last one informed me of the cyst but said it is congenital and nothing to worry about, yet I get more off balaced, nauseated, full sensations in head, etc. daily. I can not even stand up for more than 10 minutes without feeling weak in my legs and head. My symptoms are getting worse and I am still receiving migraine medicines. I need a doctor who will believe in me and will compare all of my scans to see if there has been a change in the size of this cyst. I know migraines are bad, but not like this. I am so glad I found this forum and so glad I was finally told about this cyst last week. I have been going through this for 2 years and constantly declining. Any information for Atlanta neurologist who specialize in this will be truly helpful. I hope it is not one of the four who have been giving me anxiety and migraine medications. Out of respect, I will not name them.
August 1, 2011 - 12:10amThis Comment
Hi,
So sorry for your trouble. I understand exactly what you are talking about and it is frustrating. You know, I grew up in Atlanta, but have not lived there for many years. I know there is a neurologist named Dr. David Lesch at Northlake Regional Medical Center who diagnosed my cyst years ago. Now he is not a neurosurgeon, but a neurologist. He may be able to give you the name of a neurosurgeon in the area. You could give him my name as a reference....Maria McCutchen. You could remind him that he diagnosed my arachnoid cyst and ask for a neurosurgeon's name who deals with brain cysts.
Anyways, just a thought. Other than that, I am not sure of any names. You may also want to see who the neurosurgeons are at the Mayo Clinic. I would like to know what you find out and who you end up seeing....if you care to post again.
Good luck and keep trying....don't give up!
August 18, 2011 - 9:08pmMaria
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Can anyone recommend a Neurosurgeon specializing in Arachnoid cysts in the Kentucky, Illinois area? My husband has just been diagnosed and the neurosurgeon is currently giving him a dueretic to drain the fluid. The doctor said he has only operated on two people with this cyst so we would like to find someone with more experience for any surgery that he should have. Thank you so much for this forum.
May 17, 2011 - 8:38pmThis Comment
Have you asked your husband's doctor for recommendations of other doctors in his specialization, for a second opinion? A good, credible doctor would encourage you to seek a second opinion, talk with another surgeon who has performed more surgeries, and would tell you how to search for doctors in your area. Use your current husband's medical staff for this information!
While you wait to hear from other's who may have a doctor recommendation in your specific area, there are some other places you may look to begin your research. I would start a list, using these organizations as starting places, and see if a few doctor names are repeated and worth a phone call to their office. You can inquire about number of surgeries performed by the specific neurosurgeon, ask what other surgeons are recommended...think of this as interviewing doctors and you will find one that is the best fit for your family.
Here is the information I compiled to help.
Narrow down your search, and begin by finding a Board Certified Neurosurgeon in your area by going directly to the Professional Organization site:
1. The American Board of Neurological Surgery, Directory of Diplomates in Louisville, KY: http://www.abns.org/diplomates/default.aspx
2. The American Association of Neurological Surgeons also lists Board-certified neurosurgeons by region: http://www.aans.org/Find%20a%20Board%20Certified%20Neurosurgeon/Search.aspx
3. NORD (National Organization for Rare Disorders) arachnoid cysts site: http://www.rarediseases.org/rare-disease-information/rare-diseases/byID/989/viewAbstract provides list of national organizations and a patient networking program. The patient information center (800-999-NORD) says, "if you have questions about topics related to accessing needed services, a NORD nurse may help. Also genetic counselor makes referrals to counseling centers". You can call this number and ask if there are doctors in your area who have specialize in arachnoid cyst treatment.
4. The Arachnoid Cyst Awareness group (linked from NORD) provides a list of doctors by major city. None are listed for Kentucky, but you may use this to call your nearest hospital listed on this directory, and ask for their recommendation for your city: http://arachnoid-cyst.com/
5. You can also view some of these same sites, identified above, on the National Institutes of Health Office of Rare Disease Research: http://rarediseases.info.nih.gov/GARD/Condition/17/Arachnoid_cysts.aspx. You know the website is credible when it is referenced by a website ending with ".gov".
6. US. News & World Report provides list of best hospitals, based on location and specialty: http://health.usnews.com/best-hospitals/area/louisville-ky/neurology-and-neurosurgery
July 3, 2011 - 8:18pmThis Comment
Living with a brain cyst can be frightening....where and who do you turn to? In October, "It's all in Your Head," will be out and available and I hope my sotry will help those who have found themselves in similar situations. Brain cysts are simply not known about to the degree that many other medical conditions are. They can be frightening and you may not know what to do, or who to turn to if you have been diagnosed with a brain cyst. I hope that my story will not only answer some questions but help, in a comforting way and let others know they are not alone.
May 12, 2011 - 1:08pmThis Comment
Hi,
So sorry to hear about your troubles. You know, anything is possible. The cerebellum does play a role in fine motor skills, and that was one thing I had issues with before surgery and since surgery. Also, because the brain stem is also in the same vicinity, the cyst may (or may not) be putting pressure on the brain stem. The brain stem is where nausea is controlled and my brain stem was severely compressed from the cyst and I had nausea. I did not have too much of a problem with tremors, though I did occasionally experience them, and still do.
It is always good to get other things checked out, such as the inner ear, because just because you have a brain cyst, it doesn't mean that it is the cause of "everything," and all the symptoms you experience. But once you have gotten your inner ears checked and if nothing is found there, it helps to link these issues with something such as a brain cyst.
After you have your PET scan, you may want to ask your doctor if your brain stem is affected. To what degree is your cerebellum affected? Are they being compressed due to the cyst? What other organs of the brain are being affected by the cyst? Is your pituitary gland? Your optic chiasm? How about your ventricles. My 4th ventricle is severely narrowed, and when the flow of cerebral spinal fluid is interrupted in any way, this can cause pressure in the brain. If your optic chiasm is narrowed, it can affect certain aspects of your vision. Just ask him to show you your scans and point out the different areas of the brain and what the cyst is affecting....which areas. Once you know, you can start reading up on those areas of the brain, see what they are responsible for and this might help you to realize what is causing the symptoms you are having.
Once I learned all about my cyst, how large it was, where it was, what organs it was compressing and had damaged, I started reading about these organs and what they do for the body as a whole, and learned that my symptoms "were" being caused by my cyst. For instance, all my numbness I had at night while I slept....my entire body went numb from head-to-toe, was cuased from the cyst putting even more pressure on the brain stem when I layed down. Because mine is at the back of the brain where the brain stem and cerebellum are, those organs were being squished when I laid down. The cyst, putting pressure on the brain stem, also affected my breathing. I had terrible bouts of sleep apnea.
So if you know exactly which organs are being compressed or affected by the cyst, you can study up on what those organs do and what they are responsible for and deduct which symptoms you have and make an association. I listened to many doctors try to tell me that my cyst "couldn't be responsible" for so many of my issues, and it's funny that once the doctor who performed my surgery did the surgery, many of these symptoms either went away all together, or lessened a great deal.
I would simply recommend to study up on the brain and learn about the different areas and what they are responsible for, and tell your doctor that you want to hear all about your cyst....where it is and which parts of the brain are being affected by it. The more you know about your situation and your cyst, the more you can help your doctors learn too. They themselves, don't always know a lot about brain cysts. They are still considered rare and a mystery.
Good luck and keep us updated.
May 6, 2011 - 4:42amMaria
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