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 All - Just wanted to give you an update...My surgery is scheduled for Monday January 25th. I have a bunch of pre-op appointments jammed into my work schedule, and am currently on an antibiotic regimen to try to knock the nasty cold out of my system prior to my surgery (the joys of having a 1 year old in the house that attends daycare......)
I am trying to come to terms with everything, am making out my will, living will, and medical POA for my husband, but i will tell you that i was expecting a little bit more time to get all this accomplished! I do have my Faith in God and am on prayer chains across the country, in Australia and England. I know that all the issues i have had in my life are for a greater purpose, i just wish i knew what that purpose was......I hope that i will be able to get on the puter soon and update all of you on the surgery and how it went. thank you all for the words of encouragement and support.
May God Bless you all -
Melanie
January 19, 2010 - 6:17amThis Comment
Our best to you Melanie. We will be with you in spirit on Monday, and waiting for your updates as you are able to provide them. You have already accomplished a lot in a very, very short time, and have a lot of friends providing support and prayers. If I could reach through the computer I'd give you a big hug and wish you well personally. Please feel free to contact us at any time if you have questions or concerns, or have someone else reach out to us on your behalf. Have a good weekend with your family, all will work out the way it's meant to next week.
January 19, 2010 - 5:53pmHuge hug, Pat
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Hi Pat -
January 15, 2010 - 6:32amAs always i am grateful for all the words of encouragement. I'm not sure if you read the reply that i posted to Maria - but i have been faced with many, many challenges during my life, this being quite possibly the icing on the cake so-to-speak.
Any information is helpful, i have been receiving it from all my friends and family. I am just not ready to process any more information as I have alot to consider, take care of, and get into order prior to the surgery. Knowing the risks is making me realize that life is very precious and can be taken away at and given moment, and it must be cherished as if i were living my last day.
Am i scared - You bet! i know that i was given the absolute worst scenario from the doctor but i would not trust him had he not. I am now just waiting for a date to have the surgery done so right now i am trying to get my affairs in order, write down instructions for everyone that will be helping care for my grandson, etc.
Thank you for all the words of encouragement and support - it means alot. I will check in again when i have some more information regarding the date.
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Hi Melanie - I asked Maria if she could get in touch, and am glad she did. She has a wealth of knowledge and is always inspiring.
One thing I wanted to be sure to mention is that it's really easy to get information overload when you're facing a serious medical situation...from what you're saying you may already be somewhat there. I've found it helps to have my own list of priorities, and to also try to separate out the people with real world experience information from those with good intentions but not necessarily accurate information. I've also found it helpful to keep data in one main notebook that I take everywhere because so much information comes in at different times and it helps to keep the data straight and to also have it in writing to go back to it when it's needed.
So, the weekend is almost here, and I encourage you to make sure you build some FUN into your schedule, even if it's as simple as a relaxing walk. It's easy to get so focused on the medical worries that it totally absorbs you, and that's not a good thing in the long run. I'm glad you have friends and family and your precious grandson around you, and loving you, and helping you through this.
Talk with you again soon, Pat
January 15, 2010 - 5:18pmThis Comment
Hi Melanie - No, No, No. You're not going to be removed from the forum. Unless you want to be by starting your own forum as an ASK or as a SHARE. Your posts would get more attention that way than within this thread, but you are welcome to be where YOU are the most comfortable.
It's never, ever easy to get the kind of news that you got today. And the way that surgeons give you the full scope of risks can be overwhelming, but they have to tell you the absolute worst that can happen. If you can find out how the average case turns out it would likely be more reassuring.
I once had a scary situation with a dermoid ovarian cyst. There were no symptoms, it was found because of an x-ray done after an auto accident. When I met with the gynecologic surgeon it was at a point somewhat like your cyst, where there was no choice but to have surgery and there were a lot of risks. I well remember how frightening that experience was. I was informed on a Friday that it was in danger of immediate rupture which would likely kill me and that I needed to be in surgery asap but I had to make arrangements to leave work before I could schedule the surgery. What helped me to get through that was knowing that I was on the way to getting excellent medical care to deal with the problem and being grateful that it was found before the cyst had had a chance to cause a life-threatening situation. I'm not trying to tell you how to think, but I do empathize with what you're going through and hope my thoughts can help to bring you some comfort.
Melanie, do you have family members or friends or a spiritual advisor who can help you as you go through this? Might your surgeon know of a local support group that can assist you? Is there something we can do at EmpowHer to help you?
St. John's Health Center in Santa Monica, California is a highly respected hospital and their Brain Tumor Center routinely deals with epidermoid cyst removal. Their website has a lot of information about the diagnosis and preparing for surgery.
http://www.brain-tumor.org/76_Epidermoid_cyst.html
The American Brain Tumor Association is a good source for information and support. If you do a search for epidermoid cyst on their website you will be able to get a comprehensive paper in PDF format about your type of cyst.
http://www.abta.org/
The ABTA also offers support by phone and email. ABTA Information Specialists are available with live help between 8:30 am - 5:00 pm Monday through Friday, central time. Call the toll free number at 800-886-2282. Or, you can send an e-mail request to [email protected].
Let me know if this is helpful to you, and if you need anything else. Please stay in touch and let us know how you're doing. Above all, take good care of yourself. You will make it through this!
January 14, 2010 - 6:07pmPat
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UPDATE - i spoke with my dr. this morning. I have a benign arachnoid cyst on the back of my brain pressing on my spinal column. It is large and is past the point of "lets watch it" It has to come out because of where it is and what it is doing. I go to see the neurosurgeon today. It cannot be the same dr. that did the surgery on my back, as this is not his specialty. Alittle bummed about that as he is wonderful, but my dr. highly recommends this other doctor and i trust my dr. with my life. I will keep you all posted as to the details i get from the surgeon.
January 14, 2010 - 9:05amThis Comment
Hi Melanie - This must be an incredible time for you, having confirmation of your diagnosis and suddenly facing surgery. I'm glad to know you trust your doctor so much, as well as his recommendation. I know it may be hard but please do what you can to remain calm and centered during this time. Consider taking a tape recorder or a friend with you when you meet with the surgeon as you will likely get a whole lot of new information in a short time. Please let us know what you learn in your next visit, and if we can help you. We wish you the best. Take care, Pat
January 14, 2010 - 9:28amThis Comment
Well, i am back from my visit with the neurosurgeon. Gee - am i going to get excused from this forum? it is NOT an arachnoid, but an epidermoid cyst. I have no choice but to get it removed as it is right under the cerebellum - pushing up on the cerebellum and pressing into the spinal column.......and WOW the risks involved with this surgery......guess i should prepare my will, both living and non living.........I have never been so scared in all my life.
January 14, 2010 - 12:24pmThis Comment
Hi Melanie,
Wow! So you got some news today. I have to tell you that that is how I felt when I got the news about my cyst. My arachnoid cyst, (posterior fossa cyst) which sits on the back of the brain, is so large that every doctor directly involved with my case as well as indirectly, has told me it is the largest one they have seen in their years of practice. So large, that many times arachnoid cysts can be removed, but mine is so large that my brain has rearranged itself to make room for it. And so large that if they were to remove it, I would die. This is because my brain expects it to be there now....so to remove it would put my brain into shock. So I will forever have to live with it, and work around it.
I understand your fear completely! My brain is now sagging, due to overdrainage of the shunt they had to put in, and the base of the brain has herniated into the spine. Essentially I need another surgery to correct this chiari malformation, but most neurosurgeons are scared to take my case due to being afraid they will make my sagging worse. I have to see a chiari specialist in NY to see if they will be able to help. Meanwhile, I am living with pain and dizziness, off-balance problems where I "tip" over a lot. It's tough. Especially trying to be a mom to a 9 year old and 11 year old...both boys. Brain surgery of any kind is frightening beyond words. What I had to do was weigh out the outcomes of having the surgery versus not. Which had the potential of making my life better if I followed through with it...and of course it was the surgery. Not having it would only mean definite misery and even possible death. That was not an option with having two (even younger boys) at the time. I also prayed A LOT! I told God it was out of my hands, and in HIS! I do not know if you are a religious person....believe in a higher power....but I found to rely on my faith was extremely helpful. I won't lie and say that I was at total peace with either surgery...fenestration or shunt placement. But I was much more calm than had I not been a prayerful person. I trusted in my faith that God was going to get me home, healed, and back to being a mom....or in your case...back to your life whatever that may entail!
You can do this! If surgery is what you need, just trust in your doctors that they are skilled and experienced in this type of problem and surgery. Inform yourself as much as possible. I found that knowing as much as I could beforehand helped. I'm not one to go into anything blindly. I like to know as much as possible. If you need anyone to help you through this, feel free to contact me. I wish you all the best and will keep you in my thoughts and prayers. I would like to know when and if you decide to have this procedure. If you could send another note in the future. Good luck! And you can do this! I believe we women are extremely strong....we can get through so much when we put our minds to it!
Good luck!! and God Bless!!
January 14, 2010 - 8:24pmThis Comment
Hi Maria - Your story and words of encouragement are welcomed and yes, I am a religious person and have trusted God, and held strong to my Faith in Him on numerous occasions. Sometimes he comes through and sometimes he does not, but it is not my place to question, as He has his reasons for doing both. I have had a lot go on in my life, which at times has made me question my Faith - My youngest son was diagnosed with Aspergers Disorder. He is now 20, but I am still fighting with the school district as he did not receive the services he was entitled to. I was abused as a child, was in an abusive (sexually, emotionally, mentally and verbally) first marriage. In 2004 i had to have a partial discectomy. In 2006, my appendix almost ruptured and i had to have surgery to remove it. In 2009, I had to have a hysterectomy. My husband and i have recently taken custody of our 1 year old grandson because my son and daughter in law got into a little mess and need to straighten their lives out. I am financially burdened. All of this had made me sit down and question my Faith at times, but in the end i know that it is all for a greater purpose, i just wish i knew what it was. Now, i receive this news and i sit back, cry and ask God Why? Havent you tested me enough?
I am still trying to process everything, get everything in order worry about how i am going to pay my bills for the month i am out of work (i have no disability at work), try to make out a will for the "just in case" aspect of the surgery. My husband tells me that i am thinking a little extreme, but given the circumstances, the location, and the risks, i have to be.
As far as whether or not i am going to decide to have it - i have no choice. The cyst is located just under the cerebellum - it is pushing up into the cerebellum, and into my spinal column - it is blocking the flow of spinal fluid. If i do not have it removed, i could have a stroke. It must come out.
I was afraid to ask how big it was, but from the pics on the MRI (not sure what the scale is) it looked to be the size of a golf ball. I am told that if it has not entangled itself in anything, it should be a relatively easy surgery about 8-10 hours.
I have been reading a bit - my sister is a nurse and she has been sending me links to different documents pertaining to both arachnoid and epidermoid cysts (because we were not sure which one it was at first). They have been helpful, but i think i need to give my brain a rest before i try to process any more information.
Thank you very much for your support and your words of encouragement.......They mean alot.
Melanie
January 15, 2010 - 6:27amThis Comment