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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Hi Debbie,
Thank you for your kind words. I hope that I can and do help others going through similar situations. It is hard, no doubt about it. There is nothing easy about not feeling good, and not being able to find someone to listen and help you.
I am more than happy to share my doctor's name with you at Barrow's. It is Dr. Robert Spetzler. Amazing man! He does not talk much or get on a very personal level with you as a patient, but he is very pleasant, very kind, and very helpful! I would recommend him all day long to anyone. He REALLY knows his line of work, and what I liked, was that he is not an extremely young doctor, popmous or anything. He is aged, but not too aged. Do you know what I mean? You know that he has been around a while and really knows his field. On top of that, what really helped me feel good about him is that he has equipment named after him. He has developed equipment....telling these companies what he needs a piece of equipment to do, and they develop it and name it after him. He is special; and he knows brain cysts well!
And you are correct, I did not have a choice, which is exactly what I explained to my father (who is also a physician, but general practice) that there are so many procedures out there that people can decide whether or not they want it done. I had no choice. I knew that if I did not have it done, I would at the very least start having seizures...at the worst, I would die. I am sure I would not be here today if I did not have the surgery. My brain was so compromised by this cyst. On film you cannot see the whole back part of my brain. My cyst takes up about 1/2 of my brain....maybe a smidgen less. But every doctor, including my surgeon in AZ, has told me it is either one of the largest cysts they've seen in their practice, or "the" largest.
Please let me know if there is anything I can help you with. And yes, my cyst has given me some tinnitus too. I am used to it now, but even still, when it gets very loud it gets annoying!
Take care...
March 15, 2010 - 8:04pmMaria
This Comment
Hi Debbie, and welcome to EmpowHer.
You can find more information at the following links:
https://www.empowher.com/community/share/rare-brain-condition-called-posterior-fossa-arachnoid-cyst-has-wreaked-havoc-my-life
https://www.empowher.com/community/share/posterior-fossa-arachnoid-cyst-cyst-grows-back-brain-it-can-compromise-cerebellum-an
We look forward to learning more about you and to your contributions to the site.
March 15, 2010 - 7:00pmTake good care,
Pat
This Comment
Debbie-
You are a much stronger person than you realize. I want you to realize that. You are strong and can get through this! Never forget that. When you feel at your lowest, and are most scared, remind yourself of how strong you really are and recall tough, hard situations over the years you overcame. Do not ever question how strong of a person you are and that you cannot get through this! You can and you will. If I can do it...you can!
: )
Maria
March 15, 2010 - 2:34pmThis Comment
Do keep searching for "that" doctor. You will find him. These cysts can cause an array of certain symptoms, but the cyst can grow and suddely you've got bigger problems. I would go ahead and set up everything you can and find someone to follow you as you wait in case you start to have problems. This is because without warning, your brain may not be able to function normally, your thinking and cognitive skills can deminish like mine did, and then it becomes difficult to put thoughts together, and form rational thoughts. You may want a doctor to know what is going on with you while you are waiting to see what happens with the cyst. Get prepared ahead of time.
I'm glad to hear you are documenting everything. That is a biggie. You yourself can monitor changes as they happen as well as your doctor can monitor the changes as they happen as well. I think it is awesome when people become proactive wtih their own healthcare. I am so glad I did, because if I had of just let the doctors put it all in their hands, I am certain I would not be here today. If I had listened to every doctor that told me to go home and not worry, that these cysts normally don't cause symptoms, I wouldn't be writing this now. I kept pursuing doctor after doctor until I found the one who told me that yes, they do and can cause symptoms, and mine certainly was. And if I didn't have surgery, I could die. He said I was headed down a very wrong road, and that it was just a matter of time before seizures set in, and worse.
I knew something wasn't right. And I knew there was a doctor out there that was going to believe me, and help me.
March 14, 2010 - 5:51amThis Comment
hi maria, you hit the concern i have right on the head. the hard part is finding a dr who too believes these cysts cause problems. as you can see i came in under anonomyous in my last blog that begins with 'hi all,' so theres that confusion you were referring to. should i be documenting each day or only as symptoms become apparent? i hope you and everyone has a good day today. take care lee
March 18, 2010 - 7:50amThis Comment
Hi Maria - Congratulations on continuing your survival with the start of this new blog. We value your many contributions to EmpowHER members through your articles and responses to questions. I want to encourage people to share their questions and comments on the EmpowHER website first, and to view your blog as an additional resource. I think you'd agree that it's helpful to have as many people as possible share information to support each other.
March 15, 2010 - 7:01pmTake care,
Pat
This Comment
hi, my name is lee and i learned here on this website what the neurosurgeon failed to share. that i have a posterior fossa arachnoid cyst. that this is a rare cyst because of the location. that i need to find a dr and continue to search for a dr who believes as i do that its not 'all in my head.' that the symptoms are related. so i'm documenting and taking a wait and see aproach while being pro active about my healthcare. Thank you so much maria for reaching out to help others.
March 13, 2010 - 5:36pmThis Comment