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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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WOW Good luck and long life pardner!
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2 ReactionsFantastic news!
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1 ReactionThat is rather remarkable that your memory function and IQ completely recovered after your cyst removal, @kyoto. From your experience with getting different advice from different neurologists on your case, what would you advise others to do who are wondering about potential surgery on an arachnoid cyst?
@titan26 - have you found a neurologist whom you feel listens well and has experience with arachnoid cysts?
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1 ReactionOn the WMS-R score before surgery, I was nearly two standard deviations before the mean (71/100). It was a huge shock to me, as I was not aware of how compromised my memory function had become. I work as an academic, and I don't really know how I was able to keep going. I was above average on the same test within a week. I don't know if it continued improving after that.
My advice would be that fenestration is an outstanding treatment. From what I understand, the chance of re-ocurrence is low. It certainly isn't fun walking into a surgical theater for brain surgery, but I am sure glad that I did it, and would do it again. The procedure was keyhole surgery, and from my search online for videos of the procedure, it seems to involve a delicate teasing apart of tissue until the cyst is reached. I actually liked the idea of the cyst being popped ("fenestrate" means making a window in the wall of the cyst), and all the accumulated CSF being drained away. After the keyhole surgery, there is just a small indentation left on top of my head where the instrument went in. When I realized that, compared to other patients on the ward who had undergone brain tumour surgery, my scar was pretty minor and my recovery was really rapid, I felt a big sense of being very fortunate.
I did not have this kind of brain tumor but went to Mayfield clinic, Cincinnati Ohio to have mine excised. Very happy with positive outcome. Might contact them. Good luck.
@hamalot - I wanted to add my welcome to Mayo Clinic Connect. Good to hear about your positive outcome with the excision of your brain tumor. What do you think made your surgery and its outcome go so well? Interested to hear any factors you can pinpoint that other members here might look for?
My husband didn’t have that type of cyst but had a synoma (spelling?) tumor which was wrapping around his spinal cord. We first had to have an MRI done by a neurologist and then saw a neurosurgeon who specialized in removing this type of tumor. Hope this helps a little.
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1 ReactionHi, @djb0711 - just wanted to be sure I understood what type of tumor your husband had. Perhaps a schwannoma (see https://www.mayoclinic.org/diseases-conditions/schwannoma/cdc-20352974)?
Hi Kyoto, was your cyst drained completely? My fenestration was done through the third ventricule and it is draining very slowly. My symptoms are not going away as fast as I had hoped. My CT Scan after one month post surgery showed some progress, but not significantly, I will have another follow up with the neurosurgeon and CT scan 3 months post surgery. I have foggy brain and headaches and/or migraines pretty much daily and I still have paresthesia (numbness of my forehead and tingling of my scalp on and off. My vision is still blurry/double and I still have palpitations for which they have done ECG, CT scan, echocardiogram and 72 hours Holter test...which all came back normal. I did some research and I believe it is Postural Orthostatic Tachycardia Syndrome POTS) as this is happening pretty much every time I change position...my heart rate goes up 30-50 bpm when I get up in the morning, if I do laundry it goes over 160, I am not running marathon here! I have been referred in Cardiology, I hope they can do a tilt table test to confirm this but not holding my breath, as POTS is not very well known here in Canada and often misdiagnosed. As for my vision, I have been referred to an ophthalmologist but there is a 4-5 months waiting list.
Anybody in this group experiencing similar symptoms? I was wondering if acupuncture would help with the paresthesia and headache? I also did some research on low laser therapy but not sure if is safe/applicable for head/brain?