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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Add a Comment280 Comments
Hi Grazyna,
I am so happy to hear the news of you being proactive about this and making the move to get your medical records to Phoenix. That is such good news to me. I hope they are as kind and understanding, as well as proactive witih you and your case, as they were with mine. Please, please keep us updated on what they say and what you find out. I will be keeping you in my prayers and hope that they can and will help you....whomever you ultimately decide to go with.
Keep us informed.
April 9, 2010 - 8:58pmGood luck,
Maria RIchmond
This Comment
Graznya - Way to go! Keep us posted and know that you have our support. Pat
April 8, 2010 - 12:14pmThis Comment
Hi Grazyna - It's frustrating to read about your continuing problems in getting the care you need, and I know it must be even more frustrating for you. Your husband, bless his heart, wants to help, so he's looking for a solution too. If I was personally in your shoes I would make obtaining specialized treatment for the cyst my top priority. To do that I would see the local neurosurgeon AND I would get a second, expert opinion. Maria Richmond has previously provided information in an earlier comment on how to get a second opinion from one of the top experts in the world, someone who deals with these cysts on a regular basis. I hope you will do that or find a local expert.
As far as the neurostimulators, you could view this as something you are researching in your continuing quest to get the help you need. Going to an appointment and learning information is not a commitment to doing this unless you want it to be. I would keep in mind, however, that doctors will push the services that they provide in their specialty.... just as a burger joint will sell you burgers. If what you really need is a pizza the burger joint isn't going to sell you one.
I understand being scared and feeling alone. I'm going to suggest you get in touch with Dia DiCristino who founded an awareness and networking group for people with arachnoid cysts, and is an EmpowHER member. Dia may know people in your area who can help you sort out the information you're getting and evaluate it. I see in looking at the site that you're already a member.
http://arachnoidcystnetwork.com/acanetwork/home.php
I also suggest you bring someone with you to the appointment with the neurosurgeon who can take notes for you. You will get a lot of information in a short period of time that would be hard for anyone to fully absorb. It's common for people who are seeing a specialist to bring someone with them to help them better understand the information they're getting. Prepare a list of questions in advance so you can be sure what you need to know is addressed. If the physician objects to your list of questions, or to your having a companion, then then that's not a physician you would want to have treating you.
I'd also be giving some thought to what you will do if the neurosurgeon says you need surgery. There's a lot to prepare for prior to major surgery as well as a lot to learn.
This may sound strange but please do what you can to move from "scared" to "determined" to get your needs met. I know you don't feel well, and I know this is hard. You are the only one who can be your own best advocate and cut through the clutter and bureaucracy of our healthcare system to get your needs met. It may take getting mad to do this, and if so that's okay.
Grazyna, I hope this helps you. I am talking to you as someone who is personally living with getting a leukemia diagnosis that I got just six months ago. It has taken a lot of energy for me to research information, get second opinions and get to the right doctors and treatments. I don't advise you lightly, but with first hand knowledge of what will help.
Let me know what you think, and take good care of yourself.
April 7, 2010 - 6:00pmPat
This Comment
04/07/2010
Hi,
Update,
I didn't do well with my headaches. So I called my neurologist. He did some blood work and everything OK. Additionally because I was having problem with my vision, few times everything turned gray for seconds he told me to go to ophthalmologist. So I went to my eye doctor he dilated me and told me everything is fine, but he was very concern because I almost passed out during my eye exam because of my headache. He wrote report to my neurologist. My neurologist called me and he told me that he does not see any other options with me!!! So he referred me to Dallas Headache Clinic. I have scheduled the appointment with them. Have to wait one month. Next week I will have an appointment with neurosurgeon I have found. We will see but I'm realistic and not very optimistic. They are with huge passion gonna treat something which is not noticeable and not proof able called “Migraines” but when something like a golf ball is in your head which is noticeable and proof able they are saying it is nothing and this is not causing your symptoms.
But, I wanted to ask you about your opinion because my husband did something for me without my knowledge. He called to the doctor who helps with headache using neurostimulators. And they called me if I want to try one. They have trial unit to check if it works for me. It can be turn off and on when I want. My husband wanted me to at least try and schedule an appointment for a consultation so I did it but I'm scared really scared. Please if you know something about it let me know.
Grazyna
April 7, 2010 - 8:43amThis Comment
I'm not sure if this is the right place to ask this question...My 4 yo daughter has an arachnoid cyst in the cerebellopontine angle/posterior fossa area. Actually, it is a collection of multiple cysts; like someone blew bubbles in milk. It is displacing her brainstem and cerebellum. It wraps around her brainstem like a horseshoe pointed to the back of the head. It is wider on the right side. She had it fenestrated in August and we began to see immediate improvement with her balance, tremors, weakness, appetite and mood. However, in January I saw her hand tremor return and since then a progressive return of all symptoms, except now she has poor circulation to her feet causing them to be ice cold.
She will have an MRI on Thursday 4/1 and I am terrified to find out what I already know. It's the same size prior to the surgery or even bigger. Our doctor told us that shunting was not an option b/c of where the cyst is...Is this true? Is it possible to put a stent in to hold the area open? What are some of the other possibilities?
March 30, 2010 - 12:28amThis Comment
Hi,
I am so sorry to hear about your daughter. You must feel frustrated. I do not know much about stents to hold the cyst or area open, I am not familiar with that procedure, however, I am familiar with the fact that there are people or patients who have had to have their cyst fenestrated multiple times. This is because many cyst develop walls inside, that is what they do best. After the fenestration, the walls can re-form or re-grow. This can cause the cyst to start building up pressure again. If this is the case, they may opt to re-frenestrate the cyst. I was almost about to have mine re-fenestrated when they discovered that my cyst was still open and communicating with the rest of my cerebral spinal fluid, so they opted ofr a shunt. I would talk to her doctor to find out what all the possibilities are, and why they think she is showing old signs and symptoms. Ask them about the walls....did she have them prior to the first surgery and do they think they may have grown back if she did have them.
I hope everything goes smoothly for her and that you will keep us update.
March 30, 2010 - 4:16pmGood luck and she will be in my thoughts...
Maria
This Comment
Thank you very much Maria and Pat, really appreciate.
I will try to find someone in Baylor or UTSW within my plan I don't need any referral so I'm kind of free in that area hopefully :-) Pat Phoenix is quite far :-) but I'm keeping this option open. I have two small kids, husband and motorcycle hobby too much and headaches and traveling ...:-) Anyway, my head is killing me, but I'm trying to stay focus on my daily routine so my family probably doesn't see anything different. The only one is my husband of course, he wants me to get another opinion so I told him that I have found this group and wrote a note.
So, I will keep posting maybe somebody will use this in the future.
Right now:
Posterior fossa arachnoid cyst just inferior to the right cerebellopontine angle cistern. Max dimension 2.5cm.
Symptoms:
Headaches all the time, always left side bottom of my head. Pressure pushing to the front and my left ear.
Medication:
Topamax, Midrin, Imitrex injection , Dolgic, Maxalat
Imitrex – helped for one day only after injection
Rest of them no use.
I have also tried some natural medicine no use at all.
Thanks,
March 23, 2010 - 10:46amGrazyna
This Comment
Hi Grazyna,
I am so sorry for what you are dealing with. It's hard going from one medication to another, and getting even a little excited thinking, "Maybe this is the one. Maybe this one will help." I didn't get put on a bunch of medications. No one even suggested it, but I did try one, Gabapentin, and that made me feel horrible...due to neruological side effects. It had me on the couch for about 3 days recouperating from the side effects. This cyst, which mine is over 6 cm big, has really done a number on my blood brain barrier. That is what protects the brain and either allows or doesn't allow medications to cross over and get into the blood stream. Well, mine is really messed up and everything that isn't supposed to cross, does, and things that are only supposed to cross a little, cross a lot. So I don't do well on medications...even vitamins I have to be careful of.
I don't know if you are, but you may want to keep track of your medications in a journal and what you are taking and what works, doesn't work, and what side effects the medicine gives you etc. If your cyst grows and starts to cause more symptoms, then you will have all that logged and won't have to try to remember it all with all the memory problems you may or can develop as a result.
Well, I hope you get the help and answers you need. Keep us posted as to what transpires on your doctor's visit.
March 28, 2010 - 6:33pmGood luck-
Maria
This Comment
Hi Maria,
March 30, 2010 - 8:38amThank you for the good words. My doctor is persistent he is gonna try everything because he doesn’t believe it is from my cyst. He told me it is nothing and it is not causing my problems. So that is why I’m on so many meds. Hopefully I do not have many side effect from them. But they do not help. I’m telling him I have headaches literally every second in my life and nothing helps. Personally I have a feeling he doesn’t believe me. He things I’m making these headaches up. I wish it was a test for headaches, easy like a blood work so you could proof you are in pain. I have also the same symptom as you when I sleep at night my head is getting so numb that this is waking me up. I told him about that. But that is also difficult to proof. Rather then that I don’t have any other symptoms. I’m healthy women mother of two kids. Happy wife with loving husband. I have hobbies and job which I love. I’m master of math and computer science ;-) I have never ever had fever in my life, never ever had ear infection in my life. I was only two times in the hospital and it was when I was in labor. And I’m definitely not creasy just having headaches which are way far from migraines pattern because I do not have any kind of light sensitivity, any king of noise sensitivity, laying down in dark quiet room is not helping at all.
I think, I have found a doctor I’m gonna give a try. I took Pat link (Thank you Pat again) took first neurosurgeon from the bottom and link to my provider webpage took first neurosurgeon from the bottom and it was the same!!! So I thought what a coincidence. Then later that day my husband brought me a magazine from his work about doctor of a month and it was the same doctor for me it was quite amazing for predictable mathematician suche a unpredictable things.
So I’m gonna give him a try.
About the journal yes I’m making notes.
Grazyna
This Comment
Hi Grazyna - Thanks for writing, and welcome to EmpowHER.
Maria has provided some great information. Dr. Spetzler and the Barrow Neurological Institute are ranked among the best in this field.
Closer to home, you are fortunate to have some of the finest medical facilities in the United States. You may want to research other neurosurgeons in your area that are on your health plan and seek another opinion.
Baylor Healthcare System: http://www.baylorhealth.com/HealthSource/Neuroscience/Pages/Default.aspx
UT Southwestern Medical Center: http://www.utsouthwestern.edu/patientcare/medicalservices/neuro.html
http://www.utsouthwestern.edu/patientcare/medicalservices/skullbasesurgery.html
When you have a rare condition it can sometimes take a lot of time and research on the patient's part to find the best medical care. I'm truly sorry you're dealing with these frustrations, but I hope this information helps and invite you to keep using us as a resource. Wishing you all the best, Pat
March 22, 2010 - 6:03pmThis Comment