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,
That is a strange symptom. I can't say that I had anything like that, that I remember. But to me, anything is possible. I would not stop pursuing that if you are concerned about it, and have never noticed anything like that until your cyst. I had the "heavy head" feeling for sure. I had lots of heavy head problems, and even my neck got sore because my cyst is at the back of the brain as well, and sits very low over the brain stem and cerebellum. My cyst is well over 6 cm and I forget the other measurement, but sounds very similar to your size....maybe a little larger but very similar. It is huge....and it definitely gae me heavy head feelings and fullness feelings...like my head was so full of fluid and heavy in general. My doctors (PCP) was not so concerned either, as well as even my neurologist or even a couple of neurosurgeons. I had to find the right neurosurgeon to be concerned. Keep searching, if you need to. I wouldn't stop if it were me, until I found the one guy who understands these cysts and can give you some straight answers. And remember....write it all down. Log how often (when and for how long) you get this heavy feeling and if the bulge symptom comes and goes....how long it lasts when it's there etc. This may help your doctor.
Take care and keep us updated-
April 9, 2010 - 9:07pmMaria
This Comment
Hi dstabor - You may want to join the Arachnoid Cyst Awareness Network and post your questions to other members. http://arachnoidcystnetwork.com/acanetwork/home.php
April 9, 2010 - 6:49pmIt's a great, very supportive group. Take care, Pat
This Comment
I'm still having trouble with my password and logging in. If anyone has any directions on this, please let me know.
Thanks,
Debbie
April 9, 2010 - 4:20pmThis Comment
Hi Debbie - You're on the site so I'm not sure how to help you. Pat
April 9, 2010 - 6:45pmThis Comment
Thanks 1cuponatime for the information. It sounds like you have the right docs with some very helpful information. Unfortunately I don't feel that any of the doctors I've seen yet really know anything about these cysts. I wish I would have had that information before deciding to fly. It's tough because we all want to live and enjoy life. I'm hoping that eventually the pain will go away. Do you or does anyone else know the difference between a plain old arachnoid cyst and a subarachnoid cyst? I know that sub means under so does it have to do with the location of the cyst? I believe I have a subarachnoid cyst which I believe is sitting on the outer part of my brain touching the cranial nerves (7,8 and 9). Anybody out there with more information on these things, I'd appreciate the help. If anyone out there lives in the NYC area or knows any doctors, please let me know. I'm getting desperate to find a competent neurologist. I've found who I think is a decent neurosurgeon but I haven't been back to him yet although he doesn't seem to think many of symptoms are related to the cyst so maybe another neurosurgeon consult would be helpful.
Thanks,
Debbie
P.S. What is the size of your cyst? I believe the question was asked before does the size impact the symptoms? Naturally it may depend. I once read people have these things the size of grapefruits and get no symptoms, not sure if that's accurate. I know I have lots of questions and am hoping any of you on this blog have answers for me and others.
April 9, 2010 - 4:13pmThis Comment
hi debbie, there are several sites that i initially found when first diagnosed. arachnoidcyst.org is one i garnered lots of info from. a gal named cathrine clay began it. the site itself is older but i did find answers to some of my questions. the difference between an arachnoid cyst and a sub arachnoid cyst is that the cyst is located in or near the sub arachnoid space. i hope this site helps you find some answers. if not there are other ones i have visited and saved in my favorites. last fall i was told the cyst is almost 2 cm. one report says its to the left, one says its to the right, one says its sub arachnoid, you get the pic. i just want a second or third opinion to confirm once an for all its true location. i mean do these things move around or mulitiply? i'm seeing the dr on the 13th. ok gotta go. take care lee
April 10, 2010 - 7:40amThis Comment
Hi Maria,
I'm happy to hear that you are on vacation with your children. Children are such a blessing especially during the tough times. I hope everything works out for you. I still am having head pains on the upper back of my head left side. I saw a neurologist in NYC who I've seen before. He thinks it may be related to my neck and prescribed some cream and says that will help rule out if it's the cyst. I'm not sure if I agree with that one. My chiropractor seems to think it's a cerviogenic headache. Flying on the plane from Arizona did me in. My head pain was excruciating and I can't really take anything due to my tinnitus. None of the doctors I have been to have ever had a patient with an arachnoid cyst and symptoms. It could be my symptoms are unrelated but who knows. I have had a hard time getting logged into the site. I forgot my password and keep trying to reset but can't seem to do it. I get a temporary logon and then I can't figure out to get to where I reset the password. I hope that Pat can assist me with this. I would like to continue with keeping in touch with everyone here. It's great to share and have some suggestions and some support. I went back to the neurologist and he prescribed me some ointment to put on my head and says if it improves it's probably not the cyst and if it doesn't then it's the cyst. I'm not so sure about that. Does this seem logical. I'm trying to stay on a logical path. Also I suggested getting another consult with another brain surgeon and he said, what would that do? If that person says you should get brain surgery then you'd need a third opinion. He made me feel like I shouldn't get another opinion at this point. I'm at the point I don't know who to believe. Any suggestions would be welcome. Hope to hear from you soon.
April 8, 2010 - 7:55pmThis Comment
hi deborah, just wanted you to know i too experienced excruciating pain after flying back from calif to south carolina. it went on for at least a month and a half if not 2. drove me to see a dr who sent me to a ear nose throat guy who determined it wasn't related to my ears tho the pain was knife like sharp beginning from the right back side of my head and around exiting out thru the back tip of the right ear cartilage. hit with each pulse. the ent guy ordered the contrasting cat scan which revealed something in back of my brain. he then ordered a contrasting mri. the radiologist compared the results and believed i had sub arachnoid cyst. having never heard of such a thing, i hit the internet. learned a lot including that flyng is something you do at your own risk because the fluctuating cabin pressure disturbes the internal pressure ie the cyst and csf inside and out. those with aneryisms, cysts an such are at risk. i read this online. found only after the pain just disappeared one day just as it origianlly appeared. i beleieve one of the entries on the blog spoke of cranial nerves which i did not know existed and pressure on them causing pain. sounds like that is whats happening with you. i thank god haven't experienced that pain since tho i get other lesser ones. my cyst isn't that large accordign to neruosugeon i was sent to. he also assured me that he believed the cyst tho arachnoid was not a sub. ironic that i felt some relief tho i am now seeking a second opinion to verify its not a sub. the radiologist has years of expeirence under his belt too so i need to reallly be sure. the same neurosurgeon also suggested cold and hot applications for my neck to relief pressure buildup from the cyst n csf when i need to. said i'd need to have cat an mri's 1 or 2 a yr to moniter the growth but that the symptoms we attribute to this type of cyst, well he doesn't believe the cyst causes symptoms uhnless the cyst is quite large. so.....like maria said, don't give up, take it one sec, min, hr etc....and blog the frustation cause were here. don't know what kind of cream the doc gave you but let me know if it works. amazing stuff if it can subdue the symptoms of such a cyst. take care lee
April 9, 2010 - 3:20pmThis Comment
Hi dstabor - The Dandy-Walker Alliance has a lot of good information on this, including a thorough definition, at this link: http://www.dandy-walker.org/blog/dw-basics/
April 8, 2010 - 2:41pmLet us know if you have more questions after reading this. Pat
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I went to the opthamologist today for testing to see if I have pressure behind my eyes. Everything came back fine, thank goodness. Next will be an EMG in a couple weeks. While at my appointment today I got a copy of the record from when I saw the neurosurgeon. The physical exam showed tandem walking impaired. Romberg sign positive and Rapid alternating movements impaired. His assessment says Posterior Fossa Cyst - Dandy Walker cyst. This is the first time anyone has mentioned Dandy Walker. Can you give me more information on what this is? Thanks.
April 8, 2010 - 2:05pmThis Comment