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 pat, just wanted to thank you for clairifying just how to get around on the 'empowher site.' i too have experienced confusion but due to the cyst i am living with on my brain. so it was great to see detailed instructions that i am able to follow even when i'm 'froggy'. god bless lee
March 23, 2010 - 6:58pmThis Comment
Hi Debbie, and anyone else who's interested -
The EmpowHER website has many features for members. In addition to commenting on posts, you can also submit an "Ask" to ask questions of other members or you can submit a "Share." Maria's post about her blog, for example, is a "Share."
To do a Share, you have to first log onto the site as you usually do. If you click in the upper left corner on "EmpowHer" it should take you to the home page (www.empowher.com) as a signed in person. Scroll down to the middle of the page, to the "Ask" and "Share" section. There's two big orange button boxes, one for Ask and one for Share. Click on the Share button, and it will pop up a "Share Your Health Story" page, with boxes for a headline, and then a box to put your "Share" information. (Personally I find it easier to do my "share" first in a Word document and then copy and paste it in the box.) Below the share box are boxes for the condition you're writing about, you can just use the drop down box to put in the right condition. At the very bottom, in the open box, put the words that are the most important ones that people who need your information would use in a search. This will make it easier for others to find your Share in the future when they go to a search engine such as Google.
You can then use the "Preview" button below to see how your share would look on the site (and spell check it, etc.) and when you are happy with it all you have to do is hit "Submit Share" and it will go on the site - instantly.
I think people show as anonymous while putting these together and their user name comes up after it's saved, so if that happens with yours, it's perfectly normal.
I'm looking forward to what you have to say, and hope this helps you say it.
March 21, 2010 - 6:17pmTake care,
Pat
This Comment
Hi Maria,
It's Debbie. I do have an account set up with EmpowHer but I am not sure how and what page to go on to post my comments. Could you please assist me in directing me to the website and the part on the page where I could enter my comments instead of doing it through here. I've read many of the postings and it really has helped me. I also just got a comment and e-mail from Pat Elliot. I would like to continue being a part of this blog. Hope to hear from you soon so that I don't have to get posted anonymously and that I could also view the posts. Thanks for the help.
Debbie
March 21, 2010 - 4:34pmThis Comment
hi all, its pretty out today. just wanted to say hello and share that upon reading of Debbies's experience with her cyst i now suspect that the pain which drove me to seek medical help initally may have been a cranial nerve the cyst touched? that pain drove me to seek medical help. it was excruciating lasting almost 3 weeks. nor wasthe cause ever determined. hmmmm....definitely going to share that when i keep my first dr's appt. the positive side tho, the cyst was discovered. i too have been dealing with sinus twinges,pressure etc..tho i don't know if the cyst is the cause. reading the entries of this blog makes me feel that i'm not alone and can reach out if i need to. i'm so grateful for your starting this maria. my heart goes out to each of you and i'm keeping you all in my prayers. didn't sleep well last night. you know the, back of the head ache and nausea. what a world, what a world.....hope the day is good for all lee
March 17, 2010 - 9:11amThis Comment
Hi Lee,
It sounds like you are in pretty good spirits which is good. It really helps to keep your spirits up in order to get through dealing with a brain cyst. My heart goes out to you too...hearing so many stories from people who are going through what I have been through is sometimes hard for me, and sad. It brings back so many memories and actually causes me to relive what I went through.
Keep going...that's all I can say. Keep looking for help and tracking your symptoms and health changes. Keep looking for that doctor who will help you and you will get there. Pressure is no fun. It is hard to imagine life without it, when you've lived with it a while. I remember how hard it was, just like it were yesterday, having all that pressure in my head, and how amazing I felt when it was relieved. It was like I was born again! To think clear again. To be able to see and focus. It was an awesome day!
Good luck, and you are welcome about me starting this blog about these brain cysts. I'm still amazed at how many people out there are diagnosed with these brain cysts when I spent so much time feeling alone and isolated with mine. I'm so glad that people can find support today from sites like this one, and realize that they are not alone in their discomfort and fear. And to gain knowledge and strength from these posts.
Good luck and keep us informed.
March 18, 2010 - 8:17amMaria
This Comment
hi maria, its my faith in God hon,that gets me thru each day especially the difficult ones. you know how the symptoms appear whether your getting along the husband or not, whether bills get paid or not, the kids need you... whether your house needs cleaning or not... i learned early on in life that i couldn't do it all alone. that God is always with us and that can I turn to him for strength or on a good day, simply to enjoy his gift of grace to us. i say this to you because we all draw from our experiences in this life to guide us from one moment to the next tho sometimes it can be as you say, painful to have to re-live some of those experiences. to be alone in your struggles with the symptoms of a cyst, a young family and trying to find help n support from drs, family n friends helped to mold you, bring out strengths you didn't know you possessed and here you are helping, guiding and offering support to others like me. So please don't be too sad. This is the gift you are passing on. i am comforted that God never puts more on our shoulders than he knows we can bear and when i am feeling low i break out the story of 'Job.' helps me keep my perspective. when all else fails i have a small pity party in which i'm the guest of honor and it feels good to just let go. a good cry, a lttle wine, some chocolate etc....so please know how much you really are appreciated for all you've gone thru thus far and what a light in the dark you are to the rest of us. also know that were all here for you too. affectionately lee
March 19, 2010 - 9:49amThis Comment
Thank you Lee,
Your words are so powerful because I too grew up in a religious house and have always had God in my life, but selfishly, I invited Him in, in a more intense and self-fulfilling way when I got the cyst. But He is the one who helped me through it all. I too read more on Job when going through my ordeal, that is funny..,I guess a lot of people draw strength from his story in their times of need. I'm glad you have something to lean on, like your faith, and I think it is important to do that. I also reminded God that He promised not to give each of us more than we could bear and I did remind Him often that He was getting close! He was pushing the limits of His promise with me, because there were days I didn't think I could bear any of it, but somehow I managed to get through, and I know it was because of Him! I leaned on my church and friends from church a lot too. They helped in many ways, sometimes cooking dinners for me and the family when I could not, etc. Helped watch my boys when I had doctor appointments, etc.
So good for you. I'm glad that you have the same thinking about letting God stay in control. There is so much we don't know and understand and He does. So we have to let Him take control and lead our lives down whatever path He sees fit.
Please keep me posted on your situation. I can't tell you how much I hope everything works out for you, the way it is supposed to and intended. I'm sure it will.
Talk to you soon-
March 19, 2010 - 10:51amMaria
This Comment
Maria,
I'm so glad that you started this blog. I have an arachnoid cyst and have been tested by many different doctors. My cyst is on my left cerebellopontine area. It is mildly compressing on my 7th, 8th and 9th cranial nerves. Some doctors think it may be the cyst while others do not. I have been having headaches recently on the back of my head and also some sinus pressure although my ENT says there is nothing wrong with my sinuses. I haven't felt right in 3 years. I live in NY and have been to NYC to see many doctors. I would like to know where do you find competent neurosurgeons? What kind of surgery did you have? Honestly, I'm scared of surgery. Any advice or information you could offer would be helpful. What is your e-mail. I tried to post on the blog, but was unsuccesful I will keep trying. Please keep me posted.
Thanks,
Debbie
March 14, 2010 - 3:30pmThis Comment
Hi Debbie-
Thank you for the nice things you say. I want you to know that I was very scared too, of surgery. It is a very normal feeling and reaction to be scared when hearing you need brain surgery. I had to keep focused on getting better and feeling better, and that with mine, I had no choice. I "had" to have it or there would be consequences.
My sinuses felt pressured too. I thought I had sinus trouble, but eventually learned that it wasn't my sinuses, it just felt like that due to the cyst putting pressure on my sinuses and creating "full sinuses" trouble feelings. Once I had the surgery, that feeling went away. Now, if I do have sinus infections (which I do get more often due to having such a large cyst and it compromising my sinuses) it will give me the feeling of too much pressure (like cyst pressure). It will make me feel like I am getting back under pressure when it is just my sinuses. lol So, I deal with both...one mimicking the other and one causing problems for the other. Needless to say, I take sudafed regularly.
As far as finding a doctor or neurosurgeon, I would just start checking with my insurance plan as to who you are allowed to see. If you can see anyone...you may want to consider traveling if need be. As I've stated before, I was living in NM and traveled 8 hours to Phoenix for both of my surgeries. Then had to go back for the brain sagging and chiari problems. But it was well worth it to get the care I got. The doctors out there at Barrows Neurological Institute are amazing! The nurses are amazing! They have an awesome neurological floor where I stayed after my two days in ICU. It was a very good experience. ALL the doctors are caring, attentive and awesome. I cannot say enough about them. My aunt even traveled from Chicago to Barrows in Phoenix for her shunt surgery. Just a thought.
I will see what is wrong with my blog and why you cannot post messages on it yet. I will let you know.
I hope you find the right doctor. Never give up. But do not let it get too bad....your symptoms etc. I did get really bad with pressure because I had no insurance due to my husband losing his job at the most inopportune time, and I could hardly see straight. And I had to wait to get medical treatment due to no insurance, but the minute we had it, I was in Phoenix and glad I went! Other than Phoenix, it may just take some time finding the right neurosurgeon in your hometown. Talk to other doctors, like your primary, ENT, etc. to find out who they'd recommend. They may each have a different doc they recommend and you could see both and decide for yourself who you like and trust.
I will keep you in my thoughts and prayers. I will let you know, as I said, what happened with my blog at arachnoidcystsupport.blogspot.com. Take care and please keep me posted! But please, try to not be too frightened of brain surgery. The chances of something going wrong today, with all they know and do with the brain, are very slim. The benefits, more than likely, will out weigh the risks. Think about and focus o n the possibilities of getting better....how much better you will feel! If your neurosurgeon recommends surgery, do not block it out....consider it seriously!
Take care-
March 15, 2010 - 2:30pmMaria
This Comment
Dear Maria,
What a blessing you are! I felt very lousy today, and thanks for boosting me up. I had done some of my own research on neurosurgeons and it so happens that I came upon the Barrows Institute. I hope I'm not putting you on the spot, but are you willing to share which doctor there performed your operation? I have the names of several from the institute that I wrote down, but it's always helpful to hear from someone who has gone through it with a particular doctor. I forgot to mention that I found out about my cyst from a brain MRI due to having tinnitus in both ears which really escalated about 3 years ago. With some medications and therapy, my tinnitus came down and fluctuates although it remains constant every day. One neurosurgeon here in NY said the cyst could possibly be the cause of the tinnitus. My cyst is a 2 cm arachnoid cyst in the left cerebellopontine and cerebellomedullary angles. In layman's terms from what has been explained to me it is not in my brain but pressing on the nerves (7th, 8th, and 9th cranial nerves) of the brain. I am hoping that there is another person out there that will post a blog or respond to you that has my type of cyst and the tinnitus. I'm still trying to put all the pieces of this puzzle together so that I can decide what to do. Fortunately, I still have a choice, which I know you did not. How large was your cyst? I get MRI's about once a year to monitor the size and location and any other changes. Once again, I look forward to hearing from you or anyone else out there with my type of cyst and the tinnitus.
God bless you,
Debbie
March 15, 2010 - 6:50pmThis Comment