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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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I am 48 yrs old woman from Ontario Canada just diagnosed with arachnoid cyst on brain, I do not know the exact dimensions...well, picture is worth a thousand words. I had MS like symptoms (vertigo,headaches, diziness, nausea, double vision, memory loss), which triggered the need for MRI. I was referred to a Neurosurgeon who recommended another specialized MRI plus procedure with camera to figure out best COA for surgery so to not affect language. I started having tinnitus approx 2 weeks ago left ear, right ear two days later. I was told most likely due to virus...the answer to anything and everything these days! I was given nasal steroids for the tinnitus which doesn't help thus far and got nosebleed today. For as long as I can remember I felt like my sense of smell was off which I assumed was because of multiple sinus infections, rhinitis, allergies or deviated septum. I am waiting for a date for everything ,this is two weeks after the initial appointment and I was told surgery in a month or two. Waiting game now...
Welcome to Mayo Clinic Connect, @mjp. Glad you know what you are dealing with now with this diagnosis.
Are you planning to proceed with the specialized MRI plus procedure? Did your doctor correlate the tinnitus with the arachnoid cyst?
Hello @mjp,
I went through an arachnoid cyst two years ago, when I was also 48. My cyst also looked enormous on the MRI and CAT scans. It’s quite shocking, isn’t it? Do you know if yours is lodged between your skull and brain or deeper down? Mine was deeper down and pressing on the fornix, which is part of the memory-creating apparatus. Of the symptoms that you are having, I had headaches, nausea and short-term memory loss. I am a college lecturer, and (apparently) I would forget what I had just said in class. Although my wife was very disturbed by it all, I was unaware of this particular issue of forgetting. It’s only when the doctor showed me the image of the huge cyst that I really got it. I was given memory tests, and my IQ level was so low that the doctor said without surgery I would get to a dementia-like stage. The surgery wasn’t fun, but couldn’t be avoided.
The outcome was initially very good, and my IQ levels had bounced right up a few days after surgery. On the other hand, subtle memory loss continued and I got diagnosed with Transient Epileptic Amnesia at the end of last year. This isn’t the well-known fitting kind of epilepsy but silent memory fails. I would not recognize people I had previously met, for example. I was started on anti-convulsant medicine and that issue is now under control, although I have to stay on this drug permanently. It was mentioned as a risk of surgery on the consent form.
Around the time of surgery, I also developed tinnitus, but the doctor shook his head when I asked if it is related to the cyst. I do not know why he considered it unrelated. So I am interested to hear you have a similar issue. In my case, it is a low constant ringing. It doesn’t disturb me too much and I have had no treatment for it.
The surgery itself left a small indentation on top of my head, but the scar is gone. The surgery involved draining the cyst and closing up the tissue again. Physically, I recovered completely. Good luck, and get back and let us know how it’s going.
David
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1 ReactionHello Lisa, I definitely need to get something done, sooner rather than later,. Of course I would prefer to have this done by somebody with tons of experience...however I have been told these are more rare in adults therefore handled more often in children hospitals. I developped tinnitus a couple days after seeing the neurosurgeon. The doctor I saw was aware of the cyst and had seen the MRI and did not believe there was correlation.
Hello @kyoto,
Shocking indeed that I have been able to function all these years with this thing in my brain!
Although looking back, it explains a lot of things that I just blamed on either being clumsy, all thumbs, forgetful or absent minded.
I wish I would have a copy of the actual report , I will add another picture.
The neurosurgeon did mention the possibility that my brain may not like its new shape and form, consequently I may have epilepsy episods as a result.
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1 Reaction@kyoto and @mjp - in addition to this thread on arachnoid cyst, you both might want to check out this discussion on tinnitus sometime https://connect.mayoclinic.org/discussion/pulsatile-tinnitus-1
@mjp - are you feeling comfortable with the neurosurgeon you are working with now?
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1 ReactionI think he mentioned seizures actually
He seems very nice, fairly young guy, the only review I could find said he had good bedside manners.I have faith and trust that God is in control of my situation and will provide the right treatment, by the right person at the right time.I just need to be patient....
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1 ReactionHi @kyoto
How long did everything take for you from the time of diagnosis to surgery and recovery? Are you still able to work?
Just got a copy of the initial MRI report. Evidence of a large intraventricular cyst located in the right lateral ventricle. Thus cyst is responsible for expansion of the ventricle, deviation of the midline structures to the left. The lesion measures 6x9x6 cm in the Xand Y ans Z plane respectively and has signal characteristics similar to CSF in all sequence. The right choroid plexus appears to be displaced laterally and inferiorly. The septum pellucidum is deviated contralaterally. The left lateral ventricle is deviated but not significantly compressed.