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
Hey everyone - I haven't popped in for a while but I do read every word that you write, and am really appreciating the way you're supporting each other. I don't have an arachnoid cyst, but I do have a rare form of leukemia, and like you guys there aren't a lot of people I can talk to who also have this, it's hard to find a physician who REALLY knows how to treat this, and it's a lot of work to dig up information and be my own best advocate. Debbie, I encourage you to reach out to others in the support groups who live near where you live as our peers often have the very best information in terms of which physicians are the best in dealing with a rare disorder. If that doesn't help I would be happy to work with you on research. All of us deserve the best care, and while it may take more time and more work than we'd like, we will get there, right?
April 14, 2010 - 5:34pmKeep in touch, and keep on writing,
Pat
This Comment
hi pat, your words of encouragement help so much. thank you and don't be shy when you need to blog. locating or starting a support group where i live sounds like just the ticket. do i just advertize in the paper or online like craigslist? would appreciate any advice/how to's you suggest. and pat please know that lukemia, arachnoid cyst or whatever, you can count on support in this corner. what kind of lukemia are you ill with? yesterday morning i i checked out a site, NIH.gov. if any one wants to check it out, there is an up to date page on arachnoid cyst that is very helpful and validating regarding symptoms. made me question how drs can still tell patients these cysts cause no symptoms. a one sided headache developed yesterday taht knocked me on my can. litterally took over the left side of my head. it fianlly subsided in the evening and once gone i felt much better. today tho i am again layed low but this time by nauseua n fatigue, light headeness and discomfort in my chest. comes n goes depending on how still i stay. ironic, just saw a dr and it was just my brain giving me grief. now i just don't know. will be glad when the next dr reads the scans and lets me know, sub arachnoid or just arachnoid? the sub arachnoids sound downright scary and the radiologist said he believed it was near the base of my brain. oh well, i covered this before. just typing it ie saying it helps me wrap my head so to speak around the whole ordeal for now. my poor 73 yr old mom, God bless her, is helping me with the kids. back to the couch. take care everybody.
April 15, 2010 - 1:51pmThis Comment
Oh you poor thing....sounds so miserable...and familiar. You know, that is strange. I had a weird headache that started late yesterday (Wed) afternoon and would NOT let up. I usually deal with "pain" so to have this head "ache" was odd. But as it progressed it made me nauseas and off balance etc. I felt horrible! I took several different medications over time and nothing seemed to work. I finally took a little phenergan to help with the nausea and it helped the headache go away. Phenergan was originally created for headaches, then they moved to an anti-nausea medication. I was so wiped out by the pain that I slept all night, which is unusual for me.
I hope you start feeling better soon. There is nothing more rotten than having to lie around because you don't feel well. That is pretty much how I spent my day yesterday....in my PJ's and tooling around my computer, as my head would allow.
I know what you mean about moms....mine is just at 70 and if I have this next "big" chiari surgery, she will come to help take care of me and my boys. I sometimes feel bad that at this age she is still having to nurse me back to health....not too often. She lives in Chattanooga whereas I'm in NC. But she has done it in the past. And will have to if I have this chiari surgery.
I hope you can start to feel better. I hate feeling bad.
Well get the much needed rest....my dad (dr.) always preaches that if you are tired, you should go with the flow and let your body rest or even fall asleep. That is when it heals best.
Keep us updated on how you are.
April 15, 2010 - 8:12pmTalk to you soon-
Maria
This Comment
hi maria, so glad to see your entry. was becoming concerned knowing your were struggling with that cough and pain it created. and was your dr able to give you relief? i hope you are better. n thanks for the comforting words.Your mom sounds like a good friend. my mom is crashed on couch in family room. bless her heart she tried to move things around in her room yesterday and boxed herself into a corner. i wish you could have seen her and the whole situation. i smile now but yesterday i didn't know whether to laugh or cry. entertained the idea for 2 seconds, 'call 911,' n nixed it immediately. the only way i could help her was to stand there as she used me and the wall for balance n she hoisted herself over the headboard. one of those old fashioned iron beds n thank goodness, it was strong enough to support her weight. my son is bringing the kids over so he'll be able to help get it all back where it was. still, between the 2 of us, her with the brain damage and me with unpredictable day to day symptoms, we make a whole person. i pray God doesn't take her too soon but it kills me knowing shes buried my youngsest brother, another who's messed up his life and out of the picture and here she is with her oldest only i'm no longer able to give her the peace of mind i once did. She frets about what will happen to me once she's gone tho our faith in God keeps us assured that no matter what comes, we will be ok in his hands. i felt bad too that i wasn't all there for the kids. it was fairly nice out yesterday but i was leery that the earlier symptoms might come back so i kept them inside. wouldn't let my mom take them outside alone. my husband brought home a pup shortly after we arrived in calif. we already had 2 large dogs n 2 cats that we had brought with us. i'm sharin this with you only because what i feared and had initally tried to get him to understand is now occuring. poor thing is so bored, teething. he's such a sweet pup but he's gonna be a huge dog. he' was eating the walls of the out side exterior of the house yesterday. my daugher in law scolded him for it but i don't want her to have to deal with it. i try to get outside at least 3 times a week to pick up all the poo which is at times alot. i also try to get the lawns mowed but lately i am doing good to just take care of the kids. as you know my husband travels and is at the moment on the east coast. wont be home till the end of the month. another watch dog is his stand. still we take it one day at a time and i work with 'judge' as i 'm able. warned my husband the pup has created 2 new projects for him. i hope today, for that matter, the weekend is better than the last couple of days.the babies knees are showing the carpets need cleaning again. this morning so far so good. feeling ok tho my head feels heavy n as usual the ringing is constant. i apologize for the rambling and thanks for listening. time to hit the shower and get my day going. i hope you and everyone else has a great weekend. take care n God bless lee ps, are you aware of the 1058 signiture petition that was submitted to the world health organization. Dia, can't remember her last name, she's been on this site, started the ArachnoidCystAwareness.com site. the signitures are from all over the world. She also submitted a video in which she reads a letter asking this organization to please help those like us by recognizing the need to educate the medical community on the suffering caused by these cysts, recongize it as a disease needing research and better treatment of paitients. you tube has numerous videos too backing up what she 's n all those are saying in signing the petition. i'm 329. say a prayer or several that they do.
April 16, 2010 - 7:43amThis Comment
hi debbie, there is also arachnoidcystawareness.com i live in ca right now. i was seen by a neurosurgeon yesterday who after examining me, asking me what i was experiencing, explained that he doesn't believe arachnoid cyst cause symptoms. asked if i was going to physical therapy for the pressure i feel in my upperneck and lower back of the head? he also was very gracious n decent and open to what i explained to him with regards to all those individuals like you an i and others dealling with much larger cysts. he said he'd only sent one patient in 30 yrs of practice to have one removed and only when she had difficulty with balance and walking. That he wans't the one who did the surgery either. Still as i said he was gracious, heard me out, assured me that he is putting my best interest first so he's setting up another contrasting mri and then sending me on to who he coined, occupies the 'ivory tower' at UCSF. a neurosurgeon who's very experienced with intercranial brain disorders and cautioned me that i will probably hear the same thing from him. the dr also suggested i go back for a referral from my primary dr to see a neurologist in order to rule out something else going on. wasn't doin so good either when i saw him so he was able to see i was experinceing difficulties with my cognitive abliities. so the ball is beginning to roll. what i hope i was able overall to convey to the dr was that i am doing my best to make the best informed decisions i can by doing as much research as i can with regards to my own health care issues. i did share that there are research studies online, support sites and that recently a petition of over a 1000 signitures from arachnoid cyst sufferes globally was being sent to the world health organization asking them to recognize that arachnoid cysts are symptomatic. i don't know that these things multiply but i have read of having more than one. the tinitus varies for me too. i asked about the cyst, the csf being able to press on cranial nerves but the dr said he didn't believe that possible. so i explained how i believed it was based on the excruciating pain i suffered after flying. again, he did't agree that that was the cause but could not fathom what did bring on the pain either. medical science is like alot of other sciences, an ongoing study of the human body an what works to put it right when things go wrong. so we hope, we pray and the Good Lord willing, research will prove us right. it occured to me after leaving the dr's office that i forgot to ask him if in addition to his experience with arachnoid cyst and the brain, what research data he had to back up his poistion on they'er not causing any symptoms whatsorver unless by sheer size? if i see him again, i will ask. there is ongoning research withthese things but the field is stil young. sounds like i should seek out an ent too. so debbie,i hope these words find you on a good day. my grandson's will be here soon so you take care lee
April 14, 2010 - 6:21amThis Comment
Hi 1cuponatime,
Thanks for sharing and the helpful info. I think I've been on that arachnoidcyst.com web site. If you have any others, I'd love to know them. As far as I know, I don't think the cysts multiply. I'm going to start physical therapy this week to see if it relieves or reduces any of my head pains. My tinnitus was so low last week and now it's back up. I'm also going to see another new ENT in two weeks who feels that my cyst can be the cause of my tinnitus since it presses mildly on my 8th cranial nerve. I can't believe that some people on this blog have such large cysts. I'm wondering how big do you let these things get before removing them? I suppose it depends on the symptoms. I pray for all of us that the cysts won't grow. You cyst and mine are around the same size. You and everyone else here are in my prayers. I wish there was a list of doctors who deal with cysts and have experience. It's really tough finding the right doc. Hope you don't mind, but what state do you live in?
Keep up the great attitude. You are an inspiration as well as is Maria.
Have a blessed day!
Debbie
April 12, 2010 - 7:28pmThis Comment
maria, just wanted to log in to say hi and that i hope you got some r n r with your boys n family. was nice to just take a day and go. very pretty sunset topped off the entire experience perfectly. hadn't been to the beach in april before and the breakers were something as they hit the drop off n rolled onto the beach. not feelin so hot nw so i'll catch ya later. lee
April 10, 2010 - 12:08pmThis Comment
Hi Lee,
The beach sounds great. I just had the boys at Myrtle beach last week for their spring break. Being separated from my husband now, it seems a little strange doing things like that on my own, and especially because my health is not what it used to be. I get tired easily, double vision at times, fatigued, headaches, etc. So I was worried as to whether or not I'd be able to handle it, but you know....I did and we had a great time. I think I am actually more relaxed now than when we were married and I really, really enjoyed myself.
I have found that these cysts are just the strangest things. One day I canhave one symptom and the next day, a totally different symptom (or group of symptoms). You just do not know how you are going to feel day-to-day. I have to say that I do not like that....the non-consistency thing. I would much rather know pretty much how I am going to feel on a day-to-day basis...which symptoms I am going to have on a regular basis. But the neurological system is so complex that there is no real rhyme or reason to any of it. Does that make sense to you? I have really had to learn to go with the flow over the years and take one day, one hour, one minute at a time. Right now I am battling a bda bronchitis cough that kills my head. It is so hard on the brain sagging...causing it sag more and tug on the nerves and vessels up there. The pain gets unbearable at times and can even make me nauseas and throw up, which I was in that predicament the other night. So I have to go to my internist Monday to see what she wants to do about this. I di done round of antibiotics not long ago for this bug, and may have to do another. It is just always something.
Well, I hope that you are having better days. Keep me posted as to how you do. I'm sorry you weren't feeling well the other day too. When I don't feel well, like the other night, I just always look forward to the next day and tell myself that it has to be better than the present. Most times it is.
Talk to you soon-
April 11, 2010 - 5:22amMaria
This Comment
good morning maria, i am so pleased to read of the wonderful time you had with your boys. knowing how unprediclable our feeling of well being can range, i never miss a beat taking advantage to make the most of that feeling of wellness or just a symptom or two. Yesterday is a good example. woke up feeling much better tho by the time i dropped my mom off with a friend i was battling fatigue.Still i took in a 'knit and bitch' session with a group where i live. it was my first time and i enjoyed myself. Working on a butterfly blanket for a grandaughter arriving in august. i was a tad tired but decided to take advantage and shopped a bit. wouldn't you know it, i forgot my cell in the truck and of course there were missed calls. my mom was locked out. we'd just made several more copies of the kitchen door keys. we'd double checked to be sure she had her's so i was disturbed and frustrated to learn she couldn't get into the house. i could only guess how long she'd been locked out. mom was rendered permanentely brain damaged by a nasty car accident yrs ago. so i got home as quick as i could and sure enough, she was still locked out. turns out her key worked but she didn't turn it far enough. never a dull moment. fatigue set in the moment i sat down but we enjoyed a quiet evening. its blustery n overcast today but 'alice in wonderland beckons.' Maria, i wish only better days for you hon and am sorry to hear your battling a cough. my daughter in law is battling one too along with severe sciatica while 6 months along. my son, her husband, battled a bad cough that came out of no where and it hung on for several months. he too was placed on antibiotics for a spell and the cough gradually disappeared. he's taking his wife to the doctor too. i hope your dr is able to quickly relieve you. i'm truly sorry to hear you are going thru so much pain. i'll be praying your better soon so you too can enjoy those moments of almost perfect health. don't know about you but i am quick to correct anyone who refers to my phyicall struggles as an illness. i'm not sick, 'just have a testy csyt on the brain!' ok best get my mom ready. take care lee
April 11, 2010 - 11:17amThis Comment
I have a question...not sure if this is from my cyst or not (mine is 5.2cm x 8.6cm). When I get my headache and "heavy head" feeling, I notice the back of my neck also gets sore and buldges. I can actually feel it when running my hand over my neck. I have told my pcp and neurosurgeon but neither seemed too concerned. Could this be a symptom from the cyst?
April 9, 2010 - 5:53pmThis Comment