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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Thanks Maria - I'm getting another MRI next week so my new nuerologist can compare it to the one taken last August. I'll let you know what they say.
July 30, 2010 - 9:48pmThis Comment
Hamp - Thanks for sharing your story, and welcome to EmpowHER. We've heard from several women who've gone through exactly what you're describing - being told not to worry about their cyst because it's benign, and that the headaches they have are not related. Some of our members have gone on to have surgery which has brought relief from the headaches. What we have heard repeatedly is that it's really important to work with a neuro team that has experience with arachnoid cysts and takes your concerns seriously.
It would likely be helpful if you joined a support group and talked with others who have faced this. The Arachnoid Cyst Awareness Network has 372 members and can be found at this link: http://arachnoidcystnetwork.com/acanetwork/home.php
I also hope you hear from some of our members who have arachnoid cysts.
Take care,
July 26, 2010 - 6:22pmPat
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Thanks Pat - I hope y'all don't mind me posting on here despite my not being a woman. If it helps, I'm a gay man so I do have a lot in common with y'all.
July 27, 2010 - 2:06amThis Comment
Hi Hamp, Of course you're welcome here! We have several men as members and appreciate their perspective and input. I know it's hard to find others with arachnoid cysts and we are really glad to have you in our group, and I hope we will be able to provide information and support that's beneficial.
July 27, 2010 - 5:16pmTake care,
Pat
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Anon - Thanks for the update on your son. I was sorry to hear that his surgery was so long, but very happy to learn that he's recovering so quickly. What a relief that must be for you!! It sounds like he went in at the right time, and that you have a lot of faith and confidence in his doctor. I'm now wondering how you are doing as his mom and caregiver? Is everything ok for you? Are you getting support in helping take care of your son? I know that he's the patient, but that you too are affected by everything that's been going on around this and want to be sure that you're doing well.
June 29, 2010 - 6:17pmTake care, Pat
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Hi again Im writting to update
June 29, 2010 - 11:29amMy 13yr old son had a large posterior fossa arachnoid cyst. He had his surg on the 16th of june after school let out. His nero surg said the surg should last about an hour to an hour and a half. Once in the oper room the dr found things where worse than what could be seen on the MRI scans the surg ended up taking Three hour. Thank god that I had a lot of trust in his nuro surg. The cyst was putting much more pressure than everyone though and the surg was glad that we did the surg now. My son was in the hosp five day and now only thriteen day after surg he is recovering very quickly. His dr says that he is healing quickly do to the fact that he is still young. Wanted to let all u out there know how things went. And to thank you for the support and the prayer they all seem to pay off.
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Hi Debbie - There appear to be some forums on the support website where you can ask questions and get information from the members. With 340 members there will hopefully be people that have knowledge of East Coast doctors and hospitals with the expertise you need. If that's not something you want to do then you could connect with Dia and ask her directly.
In terms of writing up your information and sending it to hospitals, I'm not sure that I understand what you are saying. Hospitals have strict protocols governing the way they handle patient information and they could not accept a request to review patient data that is sent to them out of the blue. Have you been in touch with Barrow and/or Duke to find out their protocols?
Maria, can you help out here?
June 28, 2010 - 5:54pmThanks, Pat
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Thanks Maria and Pat,
I did sign up for Dia DiCristinio's website. So far I haven't gotten much information. I am going to use my time to type up a list of my symptoms and history and send it out to Barrows in Arizona and also to Duke University. Maria, I believe you said you have a great neurologist there. I'm wondering if I see a neurologist or go straight to see a neurosurgeon. I saw one neurosurgeon in NYC and he did not at all believe there was a chance that the cyst was the cause of my symptoms. I even asked for another MRI but he felt it was unnecessary at this time since my last one was done in October which was 8 months ago. I realize that I will have to be my own advocate. There isn't a doctor I've met so far that seems to know what to do with me. I just get "I'm really sorry, but I just don't know why you are having these symptoms. I wish I could help, but I just don't have the answer." I keep praying for strength every day to get me through this and to find the correct answer. If you know the names of any doctors please let me know. I know you already mentioned Dr. Spaetzler at Barrows. Is there anyone on the East Coast? Please let me know.
Debbie
June 28, 2010 - 7:13amThis Comment
Hi Debbie - You may find it helpful to talk to other patients and perhaps to see a different medical group. One of EmpowHER's members, Dia DiCristino. founded a support network for people with arachnoid cysts. You can find more information about the network here: http://arachnoidcystnetwork.com/acanetwork/home.php
I know it can be hard trying to deal with a rare condition on your own, and I hope you will consider getting involved with the support group. I wish you all the best. Pat
June 9, 2010 - 5:06pmThis Comment
Hello. It's Debbie and I haven't written in a while. As stated before, I have an arachnoid cysts on my 7th, 8th and 9th cranial nerves. To date, I've had neck stiffness and now sensations (tightening feeling_ around my left eye and forehead and eye pressures on all on the left side. My neurologist seems to think it may be neck related and suggested I see an orthopedic neurosurgeon. Not sure how that's going to help. I'm going back to the brain surgeon at Columbia Presbyterian at NYC for another consult. Is there anyone out there with these symptoms? I'm wondering if these are related to the cyst or something else. I'd really like to have another brain scan even though last one was in October 09. Any info or suggestions would be greatly appreciated.
May 28, 2010 - 8:22pmThis Comment