share: Blog Developed for Those With Arachnoid Cysts
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 Comment105 Comments
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 - 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
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 - 7:50amMaria,
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 - 3:30pmDebbie-
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 - 2:34pmHi 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
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 - 6:50pmHi Debbie, and welcome to EmpowHer.
You can find more information at the following links:
http://www.empowher.com/community/share/rare-brain-condition-called-post...
http://www.empowher.com/community/share/posterior-fossa-arachnoid-cyst-c...
We look forward to learning more about you and to your contributions to the site.
March 15, 2010 - 7:00pmTake good care,
Pat
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
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 - 9:11am