I am a 17 year old and i have had a growing arachnoid cyst my whole life. I have daily unbearable headaches, the blurry vision and dizzyness you are having, and I occasionally bleed from my nose, ends of my eyes, and ears when I sleep. I also see red spots in my vision daily. I am scared of the surgery because I may die or there could be severe complications. The cyst may be worse, which is why i'm currently seeing doctors about treatment and surgery. So I feel for you and just knowing that there are more people out there like this makes me feel a little better.
Hi, my son (20) is diagnosed with Arachnoid Cyst near midline cerebellum after 2 MRI and numerous blood tests. Symptoms 24/7 vertigo, concentration problem, inbalance. Symptoms has persisted for the past 3 months and the Neurosurgeon we saw feels that it is not the AC that is causing the symptoms but rather extreme change in lifestyle (from a couch potato to army - stressful physical activity) that caused the headaches. He also said the AC should not cause symptoms because it has been there since birth. But you are 38years old when symptoms surfaced? My son has been out of army and resting at home for the past 3 months and symptoms remained same. I am at a lost what to do and would appreciate your experience.
I was diagnosed with 5 AC in the frontal lobe back in 2003 and had surgery dec 2004 aged 23. I opted for the less invasive operation to drain 4 out of the 5 so I had Key hole surgery things didnt go to plan as the equipment was faulty as they couldnt see what where they were going, I suffered a bleed on the brain and had a stroke. It took nearly a year of therapy and living in a rehabilitaion centre and today Im back to being normal(ish) back at work and enjoying my career.
Today I went for a routine check on my last AC and with my usual symptoms and a few new ones (Dizziness, sickness and double/blurred vision - Had my glasses prescription changed 3 times within 18 months) my surgeon has told me that I have 3 options:
1) Do nothing and live with the symptoms - Avoiding contact sports or banging my head as it can knock the AC and cause another mass bleed, possible severe disability.
2) He operates and cuts the last cyst so the fluid can be dispersed but it will fill up as there is a void the size of an apple so it will fill probably within 6 hours of surgery OR
3) he fits a shunt - Which I think this will be the way forward!!!
Im 30 now and I thought all this was sorted out. I lost 6 months of my life due to memory loss. Didnt know my family and how to spell their names, forgot there was a Sunday in the days of the week ( to this day still get the mick taken out of me and laugh about it!!) and learning how to walk talk and care for myself again, Ive come too far, do I want to take another risk! I suppose I could look at it, Life is a risk and we will never know what if until we have taken at least ONE big risk. But 2, I dont know!? At least ive got time to do research and think and discuss with family and close friends.
If anyone is diagnosed with AC the one bit of advice I can give you is talk with family but the final discision is down to one person, you!! They are going on the same journey as you and with all the help and support they give you it will make you stronger!!
Helen xx
i was diagnosed with a large posteria fossa, and mines the size of an advocado lol, scared the hell out of me, what strikes me as very funny is every time i come on these sites every one with cysts have the same symptoms as me, coincidence?? i realy dont think so, and same as you happygirl i to see spots, blue ones, i bugged my neurosegeon for 6 months n now has agreed to put in a shunt, and im very relieved, in fact i cant wait to go under the knife, ive been ill now for 18 months, ,,, fingers crossed, martin
Hi Jack,
I too have been diagnosed with an AC in my right posterior fossa. I have done alot of research on this subject since and have been symptomatic for a long time and recently getting worse. I saw a neurologist this past Monday and he was such a jerk. He said of course (as I was told most do) that this is a birth malformation and that it would'nt cause all of these symptoms. I KNOW that this is what it is. What else is going to cause a perfectly healthy 35 yr old to be dizzy all the time, have memory and concentration issues, erratic hb, migraines, seeing spots, etc? I've gone to doctors for years and they've treated the symptoms only and not seen the big picture. This doctor made me so upset. He reminded me of why I had given up. He asked me if I'd like to see the surgeon and I said "yes please", so theyre referring me to one. i really hope that I do get as lucky as you did with your first neuro surgeon and they say "lets do this". i never in my wildest dreams would have conceived the notion of wanting brain surgery but i will tell you, if this is the surgery that is going to make all of this or most of it go away so that i don't have to live feeling like a hollow shell anymore, bring it on! I can stand a few months of pain to exchange for this and I'll rather take my chances than live like this forever.
I am a 31 year old male with an arachnoid cyst on my spine from t-5 through t-9. If anyone has had this problem before please tell me what I can do for this.
Kenneth