Hi,
I have started my own blog and want everyone to know about it....it is www.arachnoidcystsupport.blogspot.com
Please follow me on arachnoid cyst questions, answers and concerns. You can email me with quesitons, too. I am a fellow arachnoid cyst survior. I have a very large posterior fossa arachnoid cyst, as well as now, I have a chiari malformation and my brain sags. My brain cyst was diagnosed back in '04, I had my surgeries in '05, and my brain sagging and chiari developed in '06.
These last two developments are due to my shunt overdraining for 6 months. I am a survivor! And now I have lots of insight and knowledge in the world of brain cysts. You can learn new information, get tidbits of news, and ask questions.
Please visit!
Thanks!
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Add a Comment127 Comments
Hi Maria,
I'll be saying my prayers for you that everything works to help heal you. I've just developed another new symptom, some tightening on the left side of my face and some pressure in my left eye. No visual disturbances or blurriness, but I just don't feel right. I am going back to the neurologist and hoping for another brain scan (my last one was in October 2009 only a few months ago. My gut unfortunately tells me it's most likely the cyst. Do you know of anyone trustworthy on the East Coast, I live in NY. Have you heard of anyone at John Hopkins in Maryland? I'm still trying to sort all this out as I complete another year of teaching. I'm trying to keep close to my faith in the Lord. It's been a true test for me. It's so hard getting these answers. It seems the more I read on this blog, the more commonalities we all share. If you have any advice on any neurologists or neurosurgeons on the East Coast, I'd appreciate some names and locations. I still have the name of Dr. Spaetzler out in Arizona. My best to you and you and all fellow sufferers will be in my prayers.
Debbie
May 19, 2010 - 4:45pmThis Comment
i hape all you mom's out there have a wonderful mother's day!
May 9, 2010 - 2:06pmThis Comment
Amina - I too find it disturbing that your symptoms have been attributed to "stress" and, unfortunately, I hear the same thing from many women in a broad spectrum of medical conditions. Maria is right on in her advice, and the need for self-education and advocacy. I encourage you to get involved with support groups and other patients as they are a great source of practical information and will help you feel less alone as you deal with your situation and work for your own best health. I'm glad you found EmpowHER, we're here to help women exactly like you.
May 9, 2010 - 12:00pmTake care, Pat
This Comment
Hi,
I am sorry to hear of your recent diagnosis. Whenever I hear people say that their doctors told them their cyst "couldn't be causing the symptoms because they are asymptomatic" I cringe. I heard that for so long, as I detriorated and one new symptom after another came up.
When I was going through that stage, I started doing a lot of research on "neurological" symptoms related to the cerebellum and brainstem, and what I found was that the brainstem and cereblleum were responsible for all the symptoms I was having...dizziness, numbness, tingling, breathing problems, etc. You see, the cerebellum, when compromised, can cause problems with these things. Like now, my brainstem, having the chiari, is compromised yet again, and I have problems with nausea, balance numbness and tingling, all kinds of problems. Anything neurological stems typically, from these areas of the brain. If you research neurological problems related to the brainstem and cerebellum, you will see what all these areas of the brain are responsible for. It took me a while to locate information on all I wanted to know, and I can help you find information and send it to you, but these areas of the berain are greatly responsible for all the problems you list.
Without knowing what size your cyst was originally, by having it followed over the years, it is hard for doctors to know if it's been growing over time. Just as it was with mine. They didn't "want to believe" it had been growing, but my surgeon, the one who operated, told me that is what they do....they build walls inside, the fluid gets trapped inside the walls and cannot escape, so the cyst grows. As it grows, it begins to put pressure on the different areas of the brain....whatever it is in close contact with. He also explained it is a very slow process, that the symptoms sneak up on you slowly and you may not recognize them as being "symptoms" of anything. And that is precisely what happened with me....just a very slow, gradual change.
But I decided to go with my gut on this, even prior to having my surgeon in my life. I knew these other doctors had to be wrong. I had been living my life fine for all those years, no weird symptoms, no neurological trouble like this, then the cyst was discovered, and it was sitting on the cerebellum and brainstem, the two brain structures that control everything I was dealing with symptom-wise by then. I listened to my body, and I listened well. I put the pieces of the puzzle toegether myself.
My advice is to use your intuition. Use your computer and find out everything you can about the brain structures in your head that are being affected by your cyst. If you are like me, you will start to see a pattern develop.
Of course it is always good to get a 2nd and 3rd opinion if that helps you. But do not give up, and do not wipe out the idea that this all could be being caused by your cyst....not yet. I personally think it sounds like cyst-problems. That is my personal opinion. It all sounds eerily similar to my symptoms in the beginning. And I hope you can get the answers you want, and more importantly....need.
Keep me updated. Good luck and if you need any help locating information, let me know.
Best wishes-
May 8, 2010 - 4:20amMaria
This Comment
Thank you Maria. I really thought my symptoms were indicative of MS, so the cyst was quite a shocking find on the MRI for me. I was fully expecting the MRI to show lesions.
The doctors referred to my cyst as "large," but it's only 2 cm, so very small compared to yours. Nonetheless, I'm taken aback by the fact that 2 of 3 neurosurgeons think it's asymptomatic when I presented with visible symptoms. It doesn't make sense that it's an incidental finding, and I'm also wondering why further testing wasn't done before those two doctors dismissed my symptoms as stress-related.
In the meantime I'm dutifully taking the vitamin B6/magnesium combo that was recommended for my "stress" and will start a symptom log. I feel much further along in the game than many sufferers in that I already know a surgeon who is willing to operate. It's just scary to follow-through with surgery at this point. Adding to the scariness is the fact that I'm in Casablanca, so perhaps a bit harder to track down a surgeon experienced in treating Arachnoid cysts.
I also agree that it's important to understand the brain and how it's wired. Interestingly, the 3rd neurosurgeon I saw showed me why he felt the cyst was asymptomatic, which was the MRI reveals that the cerebellum protrudes towards the cyst cavity, versus the cerebellum taking on a convex position from being compressed. He also suggested that were the adjacent cerebellum being compromised, I wouldn't be able to move my eyes upwards. (Um, is that all?)
In the end, I find it very disturbing to hear an array of neurological symptoms are due to stress. I fully believe in the mind-body/psychosomatic connection, but I know this is entirely something else.
May 8, 2010 - 2:17pmThis Comment
I am so grateful to find the information that is shared here. I've recently been told by 2 of 3 neurosurgeons that my cyst cannot be causing my symptoms such as tremors, hyperreflexia, nystagmus, tinnutis, dizziness, feeling like I'm rocking, motion-sickness-like nausea and tingling vibration-like sensations. Although these symptoms are what led to my getting an MRI, now I've been told despite the finding of the Arachnoid cyst on my cerebellum near the brain stem, my symptoms must be due to stress. I know they are not. I've found one neurosurgeon who agrees the cyst is causing my problems, but I'm scared to operate given the differing opinions. I will have a follow-up MRI done in 4 months and will take it from there.
May 7, 2010 - 11:37amThis Comment
Anon - While the exact cause of arachnoid cysts isn't known, researchers believe most cases are due to developmental malformations that come from a splitting or tearing of the arachnoid membrane. It's highly unlikely that your fall caused the arachnoid cyst. What's more likely is that the fall enabled you to have the tests which found it. Are you receiving medical care for this? Have your doctors made any recommendations on what you should do? Please let us know.
April 20, 2010 - 5:22pmTake care, Pat
This Comment
I had a fall down the stairs, they found a 4cm arachnoid cyst in the right cranail fossa. Can a fall down stairs cause this.
April 20, 2010 - 3:59pmThis Comment
felt ok this weekend tho i know i pushed it.learning to take advantage of when the symptoms ease up. the fatigue is back as is the louder ringing. oh well, jsut listen to the body huh. everyone have a good day. lee
April 19, 2010 - 1:25pmThis Comment
Hi Pat, Maria and eveyone else on this blog,
I have been in touch with my neurologist who is head at NYU Medical Center. I told him that my head pains aren't better. I started physical therapy. Did it about three years ago and all my pains went away. I do have some neck stuff (have an MRI of my cervical spine) that shows some stuff. So I'm back to therapy again. However, I did have a heart to heart direct conversation with my neurologist. He said that most neurosurgeons tend to wait later than sooner in dealing and removing these cysts. I asked him about another brain scan (my last one was in October at Lenox Hill Radiology in NYC) a fantastic facility. They use a 3 Tesla machine (very strong) so you get a great picture. He said that it's never too soon to get another MRI so I'll probably have another one soon. In addition, I told him I want another neurosurgeon opinion. He was familiar with Barrows Neurological Institute in Phoenix. He did suggest that I did not need to travel that far and said he would make some phone calls to help me find another doctor for a another opinion. I will be contacting him this week. I will be curious to see who and where he suggests. I'm praying that my head pains are neck related and not cyst related, but as a born again Christian I feel that this is in God's hand and that he will direct me. However, Pat if you have the names of any facilities or doctors on the East Coast, I welcome any research that you can advise me with. Maria, I pray for you that you will find healing and physical comfort. I'm curious to know who you are going to see and where they are in New York. I'm glad that there is a petition going on. I agree that there needs to be more education on this. Pat I will pray for you too and hope that you will find the answers to your leukemia. God Bless to all of you. Thanks 1cuponatime for sharing and supporting me.
Debbie
April 17, 2010 - 5:36pmThis Comment