Hi we recently have been diagnosed with arachnoid cyst one on the right is large one on the left is smaller please how can we join or find support group
Thank you for any help
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It has been an emotional roller coaster that I would love to get off anytime soon. Symptoms include dizziness headache constant throb and pressure in head vision problems speech problems memory tingling in hands
There is no support for mentally what this all does that is frustrating and that it keeps being blamed as depression
Similar sounding nightmare as yours the neuroligist we saw was a resident so pretty young no experience and told us pysch would benefit. However he didn't look at the whole picture we originally went to Er due to some weird episodes where people thought I was drunk but I had not drank. Speech slured could not control body very limp and staggering real bad head pains no ability to grip. Memory issues also long term is not bad short term is horrible no appetite exhaustion dizziness
Only within last few years have the weird episodes where space out or random fall asleep started. Recently moved to altitude over 3000 ft now the suggestion is to go to lower altitude to see if it helps pressure in head. Lived in Ontario last few years and had problems on and off but not as severe as last 7 months
I am a bleeder that complicates risks in seurgery the paperwork for operation was being filled out just really wish could have a different neuroligist who knew about these things and has experience.
Also having vision problems the internal medicine dr does feel most of symptoms are related to cyst and the area they are in
Middle cranial fossa mass effect temporal lobe right side and I have to look up the left side it had a different description
So weird how it effects IQ did neuroligist do that testing for you?
Where did they do surgery? In ont?
The most difficult problem we are having is finding a neuroligist that will listen and that has experience with arachnoid cyst. I have two cyst on large on the right one smaller on the left. It the worry of what the brain may do after surgery will it shift won't it shift is the pressure different in the cyst then the cf fluid so many unknowns. Glad u are doing well gives hope that once this is gone memory may come back. I currently am on anti seizures meds they feel I am have non epileptic siezures or narcelipsey
Thank you for replies appreciate any info you can share such a scary spot to be in
Can I ask what happened after surgery? Did you have problems did you have seizures? My cyst has been with me for my life I just turned 26. Surgeon is worried about what it how brain will react or if it will move as it's been use to this thing pushing on it for so long
My son also has mass effect and same thing so much confusion and lack of help with all of this. We had internal medicine tell us mass effect indeed is having an impact on my son and symptoms. Yet we see neuroligist and they say no …they say it's pushing on his brain but not iratating it…how can that be?? If something's pushing the. Brain and you know that and have symptoms how can it be said it's not iratating ????