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
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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
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