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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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She was doing work early on. Now the pressure is bothering her more. She isn’t acting like herself or motivated al all. I just have a hard time believing this is all
Migraines for as long as this has been going on.
Thanks for a quick response!
Jennifer
Hello Jennifer @jseibert, I would like to add my welcome to Connect along with @ethanmcconkey and other members. I have read that a lot of the symptoms of arachnoid cysts depend on the cysts location. The following article mentions a little about that:
Arachnoid Cysts / Intracranial Cysts - Symptoms of an Arachnoid Cyst
-- http://weillcornellbrainandspine.org/condition/arachnoid-cysts-intracranial-cysts/symptoms-arachnoid-cyst
Have you thought about getting a second opinion? I’m not sure if it is an option for you but if it is, the Mayo Clinic is very good at diagnosing health issues that are difficult to diagnose. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:
Mayo Clinic Contact Information: http://mayocl.in/1mtmR63
Just curious if you got any answer? We are headed to Mayo in MN for my daughter who also has arachnoid cyst. My brother had one on his spine and all symptoms that would be expected weren’t present but her had other symptoms. All
Of which disappeared once it was removed. We are struggle with doctors saying it’s not my daughters problems, but I strongly feel it is. Hope you get answers soon!! Keep pushing!!
Jennifer
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2 ReactionsHello @johnbishop
Appreciate the feedback! We have an appt tomorrow for neurologist at Mayo. Then the next day neurosurgeon. Just wondering and I know you can’t answer this definitely. If they were to determine she needed surgery any idea on how long we’d have to wait? We got a doctor referral so that helped get us in quickly. Thanks again for your advice!
Jennifer
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2 ReactionsHi @jseibert, I wished I was able to answer your question. I think the surgeon will be able to tell you at your consultation. I'm glad you were able to get an appointment quickly!
@jseibert Good luck today at Mayo. I had similar appointments for cervical spine surgery. It's the nurse who really knows the surgery schedule, because she will be the one to call the patient to schedule it, and they schedule in groups of patients. It also depends how long the surgery will take. My surgery was 2 hours and was able to fit into a day with another surgery for my doctor. A bigger surgery might be the only one that day and may wait longer because it can't fit into an existing time slot. From my first neurosurgery appointment, I could have had my surgery 2 weeks later because of a cancellation. I wasn't ready with my home preparations, so I waited until the next scheduling session. It was 5 weeks after the initial appointment that I had my surgery at Mayo in Rochester. They have a lot of operating rooms and many surgeons there. Ask the nurse while you are there (after you get the offer of course).
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3 Reactions@jseibert - how did the appointment with the neurologist and the neurosurgeon go?
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1 ReactionHi, @cmay5691 - realized you'd had your neck MRI to check for a pinched nerve before the holidays. Wanted to check in with you and and see what might have been discovered with that imaging?
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1 ReactionI just wanted to update everyone, I had my neurosurgeon appt yesterday. I am having surgery to remove the cyst on my brain on March 28th.
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2 ReactionsHi @em87
I saw that you have the most recent response and that you are having surgery soon. I hope everything goes well and please update me one everything if you could.
I am 14 right now and i got diagnosed with a arachnoid cyst when I was 13. The cyst is located in between my brain and skull. I had symtoms like terrible headaches that will last days but just to come back the next day (which still go on), I would get light headed, my neck would start cramping up because of the pressure on my head, etc.
Everyday gets more torturous. Once I went to the ER for it I have had many doctor appointments every month. But, still the pain is there. They all say I’m too young to get sergury to get the tube next to my spine but I just want it to be gone so bad. It is so hard to focus in class when all I can think about is the pin point pain.
What do you guys do to deal with the pain? Is there any advise you can give me? I can not stand this anymore and I hope no one has to go through this. I hope you are doing well and your surgery goes successfully. Sending you my best wishes!