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,
Just read all the updates, and wanted to let you know that you will be in my prayers. I read a few earlier posts, and since being diagnosed with my cyst, I too find my strength in the Lord. I became a born again Christian after going through some rough times. I get through some of my tough days, relying on Him. I'm so sorry that you are struggling not only on a physical level but on a personal level. You mentioned seeing a doc in NYC. I'm from around that area. I'm curious if you have the name of someone. I went to a brain surgeon at Columbia Presbyterian Hospital. If you need any help with info, let me know. Right now I'm in Arizona. I called the Barrows Neurological Institute hoping they would see me while I was visiting Arizona, but I was told that as an out of stater, I would need to send my films, a brief history of my symptoms (which I need to type up) and a letter giving authorization for them to review my films. Did you have to do this when you went to them? Currently, my symptoms aren't too horrific, just the tinnitus which I try to live with and some head pains on my left side of my head (of course the side of the cyst) which could be coincidental. It is getting a little better. I go to the chiropractor for that to gain some relief. I will continue to pray for all of us sharing here on the blog that God will direct us and give us continued faith that we will be healed. Please keep in touch.
Debbie
March 31, 2010 - 8:50pmThis Comment
Hi Debbie,
Yes, I rely on Him as well. It is too much to deal with, to not. He has gotten me through some pretty tough times, that is for sure. He is amazing!
Yes, Barrows does require you send them all your records to look at beforehand if you are an out-of-stater. I did that as well and that is how I knew I would need surgery...after they reviewed my recs, I got a call from a resident saying that I needed surgery. I saw Dr. Spetzler for the first time in person, the day before my surgery. It was strange, but I felt totally at ease with him when I met him.
I hope you can get to the bottom of your situation. These cysts are pretty tricky and can give off symptoms that can mimick other things. You sometimes just have to go with your gut and your intuition....that is what I did when I was told that mine wasn't causing all my problems. I just knew my cyst had to be, and then Dr. Spetzler confirmed what I already knew...that it was the cause of everything I had been dealing with.
Keep your faith, and keep us updated. I will keep you in your thoughts and prayers.
April 1, 2010 - 5:42pmMaria
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hi maria, glad to hear you are getting away. and we too will be at the beach on the west coast come sat easter weekend. really looking foward to being near the ocean. when in south carolina we only made it to myrtle beach once but at night so i never got a real view. i hear its really nice and i'll bet your boys will help you on that beach. don't know about you but being even for just a day really rejuvenates me spiritually.
March 29, 2010 - 4:14pmas for size of cysts, mine was at 1&3/4 cm at last scan. is it safe to guage strenght of symptoms as an indicator that there is growth? as for the size of yours, having the surgery is a formidable thing to consider but i know you are a strong woman who walks with God so go enjoy your time away. let me know if your hear anymore from the surgeon in new and how your get away was. god bless n keep you lee
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Hi Lee,
Thanks for the note. I am going out of town with my boys tomorrow for a few days for spring break. I am taking them to my brother's and sister in law's in Pinehurst, NC and then we are planning to go to Myrtle beach for a few days....they also have a condo there so it gives the boys a chance to skim board etc. I used to love going to the beach, especially because I lived in Orlando for about 10 years. What's sad is I don't look forward to it as much because walking on the beach can be a difficult task for me with my balance problems. The sand is now an enemy whereas years ago, I couldn't get enough of it. But for the kids, I will deal with pretty much anything. And I am looking forward to the time away actually.
When I read all these entries on all the pages, I see that a lot of people know how big their cyst is. They have the measurement. All this time, I knew mine was extra large, but did not know exactly how large. I went through my records and found out that my cyst is just under 7 cm. It takes up thhe whole back portion of my brain to where you cannot even see the brain at the back of my head at all....just blackened, shaded area of brain. Anyways, just thought I'd share. I just had never really known the size...only that it's large.
Well, I hope you have a good weekend. Keep me updated as to how you are.
Talk to you soon-
Maria
I hope you
March 29, 2010 - 9:03amThis Comment
morning maria, had to really stop n think for a minute. did n't realize there was now a 3rd page but its all good cause i found your reply. i hope this monday is a good day for you. i know how they can rock from the start or simply go downwards and all you want is for the day to end. take care lee
March 29, 2010 - 8:43amThis Comment
hi maria, hope youv'e enjoyed a good weekend of well being despite the symptoms your enduring. they sure do set the tone for the day. the dr i chose went well. she asked specfic questions about family history, entering everything into the computer, did a basic dui test, you know, touch your nose with your eyes closed, checking my knees reflex and is setting me up to see 1of 2 neurosurgeons that have a practice together. she explained they are the only 2 available as approved providers by our current hmo. so...... i am waiting to here from their office to set up an appt. doing my best to enjoy the day. take care lee
March 28, 2010 - 12:33pmThis Comment
Hi Lee,
I am so glad you were able to get checked and get the ball rolling. Gosh do I know those tests well. I could have run those tests better than the doctors by the end of all my surgeries etc. I got so tired of touching my nose, carrying a pizza box (hands stretched out in front of you), them watching me walk etc.
I hope you get the news you want to hear...that they are able to help you. There's nothing better than feeling vindicated and like you are not crazy! I found out that my cyst is over 6 cm on the back of my brain. I knew it was somewhere around that size but had forgotten the measurements so went through my recs to see if I could find it. It is close to 7 cm actually. Very large.
Keep us posted as to you getting an appt. with these neurosurgeons. I will be interested to hear what they say and decide on. I'm glad you are able to still say that you are doing your best to enjoy the day. I feel the same way, even today, that I have to try to remember to do that.
I hope all goes well...let us know.
March 28, 2010 - 5:50pmBye-
Maria
This Comment
Hi Lee,
I'm glad you have an appt. with "someone", however, as a general rule, family practice docs do not typically know too much about the cysts and what they are capable of. However....they can refer you to a specialist, so your time may not be wasted there. She may be able to get you set up with a good neurosurgeon. Ask her about it. Neurosurgeons are typically the doctor of preference with brain cysts. They are the ones to diagnose everything about them, as well as if surgery is needed, they can do that too. I wouldn't hesitate to see this doctor to get your foot in the door, and if nothing else, she will now learn and know about your situation and can follow you for other problems, and even certain ones related to your cyst as well. It's always good to have a good family practice doctor. I have an Internist who follows me; knows all about my cyst, and is helpful to me for many different things regarding the cyst....just not the main care of it, you know? My neurosurgeon at Duke takes care of my brain and anything related to it and the cyst.
Thanks for asking about my appt. in NY. No, I have not done anything with it yet....I have so much on my plate right now that I am kind of dragging my feet with it. I think about it all the time, though, and try to weigh out the scenarios of having another surgery, versus not. Especially because I am in the middle of a divorce...separated now for three months and have to be separated for 9 more in order to file for divorce, here in NC. So there is a lot going on. Not to mention that such a major surgery does frighten me. I am very tired of my balance issues, however, and do wish I could get that resolved. Well, that and my fatigue. Fatigue is a big issue for me now too, as well as some visual disturbances. So I have some more thought to put into it and hope to have a decision as to whether or not I will pursue the surgery, by the end of the summer.
Let me know how your appt. goes. I will be interested to know what she has to say and what she decides to do. My cyst is over 6cm, and takes up the whole back portion of the brain. On film you cannot even tell there is brain there....all you see is the cyst. It has created so many symptoms and problems that it gets discouraging. But I am doing "okay" and plan on only getting better....whether it is physically, or just mentally!! : )
Have a good day and let us know how your appointment goes.
March 25, 2010 - 6:31amMaria
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hi maria, after reading your last entry, good grief! don't you mean platter? my heart and prayers go out to you and your family. really sorry too to learn the seperation is leading to divorce. somehow probably on one of my confusion days, i thought you'd already had the cyst removed by the nuerosurgeon at duke medical university. if so, did another take its place? yeah, the idea of brain surgery, well i hear ya. With all the chaos that our lives can be from day to day, its mind boggling no pun intended. Hows that song go? ' I'm not crazy i'm just a little unwell uh oh right now you can't tell but wait awhile and maybe than you'll see, a different side of me.' keeps running thru my head. i mean who wouldn't be a little nuts in our situation. ironic too, have i shared that until jan I'd lived for the last 5 yrs in south carolina? after i saw the costs of the contrasting cat scans,being told by the neurosurgeon there that I'd need more reguarly, i weighed the pros and cons with my husband and he let me decide tho we both felt it best to get me back to calif where our health care reverts back to 100% under an hmo, i'd be near my kids, grandkids n family n friends. (his job requires extensive travel and he's grappling with where this whole thing is going to lead, opting to look on the positve side, the wife has brain surgery, problem solved.) over there we had a ppo 80/20, and still are trying to pay on previous medical bills from an episode of hypertension 3 yrs ago. health care coverage is great until you do really need it and when you least need the reality of just how much and whats covered under these plans. i was with an internist until august of last year in south carolina but she let all her patients go after deciding to practice only geriatric medicine in a nursing home. should this dr have knowledge +experience with our type of cyst, i'll give it a whirl with her otherwise, todays visit will be our first n last with me walking away with a few referrals to a couple of good internist that are on our providers list or in her medical group. ok, gotta ge a move on, baby's asleep still and lots do yet. talk soon affectionately lee
March 26, 2010 - 9:18amThis Comment
hi maria, i have found a dr tho i've yet to meet her and haven't a clue as to her experience or lack of regarding posterior fossa arachnoid cyst. in your search for a dr who would validate the connection between the cyst and sypmtoms, what kind of questions do you advise i should write down to ask? i plan to meet the dr first in her office. i am leery of wasting her and my time if she know's nothing about it. please let me know what you think and i hope hon that you are having a good day. have you heard anymore from the specialist in new york. forgive me if i'm going over old hat so to speak. had a lot on my plate in the last couple of days that have only served to further the confusion that comes and goes. my appt is this coming fri and i'm not sure if i've chosen the right physician. family practice and she specailzes in osteopathic medicine. our hmo said i have to choose a primary first. talk soon lee
March 23, 2010 - 7:16pmThis Comment