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Arachnoid Cyst
3 years ago I had surgery for Chairi Malformation. It took my whole life to finally get an answer as to why I was always in pain. I was continuously told I was imagining it or that I was just depressed. I finally got a good PCM who looked at my symptoms and said "this is not right" "we need to figure this out". I was sent to a neurologist who sent me for an MRI. The MRI showed my Chairi Malformation. I was then referred to a surgeon who performed a decompression surgery. A few months after my surgery my symptoms began to return. The surgeon did another MRI and said everything looked good. He dismissed me as a patient (even though most follow for 2 years). My PCM referred me to another neurologist and he sent me for another MRI. This MRI shows a half inch arachnoid cyst at the right cerebellopontine angle. So, my new neurologist referred me back to my surgeon. My surgeon said he see's nothing unexpected. Really, nothing unexpected? Does this mean the arachnoid cyst was there prior to my surgery and was ignored? What am I supposed to do now?
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Hello @kricket1962, Welcome to Connect. I can certainly understand your frustration with what seems to be a communication issue or disagreement between your new neurologist and your surgeon. There is an older discussion that has posts from last year by @kennethracey, @kyoto, @mjp and @dkhouri -- Arachnoid Cyst: https://connect.mayoclinic.org/discussion/arachnoid-cyst/
If it were me, I would try asking the surgeon why he thinks it's not unexpected and if he has any treatment suggestions. I would probably ask the doctor the same questions based on what the surgeon said. Here is some information I found that may offer some explanations.
Cerebellopontine angle arachnoid cyst associated with mirror movements: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4770653/
It sounds like the surgeon really left you hanging. Have you tried to get more information on why he said it's not unexpected?
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1 ReactionHello, all. I hope you are all well.
In the four years since I had surgery to remove a large cyst in my velum interpositum (which I have discussed on this great website), I have had amnesia, severe at first but improved with medication. It was diagnosed as Transient Epileptic Amnesia. The meds work quite well, but amnesia due to epileptic fits are still quite common. In recent months, I have started having regular deja vu experiences, usually vivid scenes from over 30 years ago.
A couple of days ago, my surgeon really rattled my cage saying that early onset dementia might be starting. I am 52. He said this is because the epileptic waveforms of my latest epilepsy scan do not strongly suggest severe epilepsy because of the shape of the waveform. I think that was his meaning.
In the same hospital visit, I had requested a consultation with a neurologist. To this new doctor, I explained the deja vu episodes, and he said they are probably caused by small epileptic fits in the temporal lobes. I don't have other symptoms like anxiety or sensory disturbances.
He also looked at my latest MRI scan. He said that it looked looked the shape of my hippocampus is changing. Not certain, but looks like. The attached photo shows my right hippocampus, and the space above it is larger than it was previously, suggesting renewed compression on the hippocampus. Perhaps.
So some questions I have:
1) How common is it for TEA fits to continue despite epilepsy medication. I am currently on Vimpat and Perampanel.
2) Can a compressed hippocampus be the start of dementia?
3) If the renewed compression is confirmed, could surgery to deal with this forestall early onset dementia?
4) Can a compressed hippocampus lead to, or worsen, amnesia epilepsy?
I can write coherently and so on, so I don't feel like I have cognitive decline yet. But I am scared.
If you have any similar experiences, insights or suggestions, I would be more than delighted to hear back from you.
Many thanks for reading,
David