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Arachnoid Cyst
Hi there, I am living in Ontario, Canada (although my profile lists an american state. There was no option for me to select a canadian province) and I am a 39 yr old woman. I have been diagnosed with an arachnoid cyst of the right posterior fossa which measures 2.1x1.6x1.6 cm.
The diagnosis came from an MRI after I started experiencing tingling and numbing sensations in my hands and feet. Well, later to follow was extreme fatigue, extreme burning pain in the base of my head and neck, behind my left ear, dizziness, light headedness, feeling like air is trapped inside my head, ears popping and buzzing, mood swings and i have had two episodes where I have almost fainted holding my baby.
I have seen one neurologist here in Ontario who tried to tell me i was pre-menopausal or depressed, neither of which is true. It seems like the medical profession here in canada do not recognize these tyes of cysts as being symptomatic, yet i have found thousands of people all over the world with the same cysts causing the same symptoms. It is so frustrating being told that my symptoms are "not likely" caused by this cyst, yet there has been no other medical reason found. The symptoms have progressivly gotten worse since I had my son, who is 20 mths old now. I am no longer working becuase the headaches and fatigue have become dibilitating. I want my life back!! I sleep endlessly during the day and night and feel as though my body just doesn't have enough energy to work for me. I am losing out on precious moments with my children and no one will help me.
If anyone out there has experienced teh same thing or help me in any way please contact me. i desperately need help.
I understand from my enormous research that I have done that these cysts are often triggered to be symptomatic after a c-section child birth (which is when this all happened for me) because of the epidural or spinal that has tapped into my spine because the cyst is near the top of my spinal cord and cerebellum. I also understand that neurosurgeons in other parts of the world are doing great things with these cysts.
thanks in advance to anyone that can help me.
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@em87 @jseibert there is a place in southern California that does endoscopic arachnoid cyst surgery frequently. Not sure of your locations but thought it was worth mentioning in case you were interested...
My neurosurgeon is a really good one in our area. We live in Indiana. He is pretty confident that he will be able to get the whole thing out rather than just draining it. I think a lot of my nervousness lies in the "what ifs" because a million scenarios keep running through my mind.
@jseibert It sounds like your daughter may have a low pressure headache. Has she been diagnosed with this? I have them but I don't have an arachnoid cyst. I have different ones called Tarlov cysts or perineural cysts. They are normally located in the sacral area but can occur on any part of the spinal cord. It happens when your cyst fills with CSF and lowers the amount of fluid in the spinal cord. When this happens your brain is robbed of CSF and causes the headache. There are some things they can do to help the headache. Didn't meant to poke my nose in. Just trying to help if I can. Best wishes and take care!
I am 66 years old and discovered I had an arachnoid cyst of the left poster fossa two years ago. It explains the recurring symptoms I have experienced for 20 years: headaches, gait problems, memory loss, dizziness, and hearing loss. However, two neurosurgeons and two neurologists have all practically laughed at me for thinking the cyst was the cause, saying the cyst is benign. Apparently it has been showing on my MRIs for many years without being worthy of mention. I’m not sure where to turn. I’m trying to understand how such an evaluation can be made. Is it based simply on some (many?) doctor’s belief that all arachnoid cysts are benign, or does a reading of the MRI bestow that knowledge? Do large medical centers such as Mayo evaluate them in a different way? I would be willing to travel if I had the hope of receiving at least confirmation rather than ridicule.
@em87, you mentioned that you have a surgeon in Indiana, which surprised me. Is the Indianapolis area where you found a surgeon willing to treat you, or another part of the state? My research hasn’t found anyone, so I traveled to Louisville and Vanderbilt in Nashville with no success. Both trips were a waste of time and made me feel foolish.
I am sorry to say we went to Mayo Clinic and were told it’s not the cause of her headaches. Look up Dr. Don Kim in Houston Jada presentation in line explaining tumors and arachnoid cyst very informative. Good luck! Jen
Thanks I’m in WI but she is in bed not able to go to school or live a normal life. Was hoping for a closer location but we are willing to travel if necessary. Thank you
Thanks so much for the support. It’s one roadblock after another but I’m continuing to look!
@em87 good luck to you! Did I understand that you are in Indiana? Me, too. Did you find a doctor in Indianapolis?
Thanks 🙂 Yes I am in southern Indiana. My neurologist referred me to a neurosurgeon in Bloomington. They also have an office in Indianapolis from what I understand.