When my daughter was first ill (6 months ago), she had an MRI head scan. They found that she had a 3.5 x 2.5 cm temporal arachnoid cyst in the right cranial fossa. It would probably have been there from birth.
We were assured that it wasn’t affecting her brain at all, and wouldn’t cause her FND symptoms, but we have always been suspicious as we have no way of knowing if the cyst had grown. The size seems large and if you research the type of cyst, they say that over 3cm is considered dangerous.
My daughter suffers mainly with walking, and dizziness. Her gait has declined a lot in the last 6 months and she is now struggling with bright light and pressure headaches in the location of the cyst. We are seeing a private Neuro Muscular therapist who is concerned that the cyst may be causing her left sided weakness. He urged us to get it checked out in case of an increase in size, a bleed or rupture of the cyst.
We saw the GP who sent her for blood tests and an eye test. My daughter is low on B12 but her eye health/vision is normal. The GP thinks it is right to get a second opinion on the cyst and has now made an urgent referral to Neurology.
I think this is a step in the right direction, and I’m wondering if anybody else has heard of one of these cysts, especially if connected with FND/neurological symptoms.
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Alienbunnies
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I don't have this cyst but I have a 10mm pineal gland cyst located right over the brain stem. Pioneering neuro surgeons operating on these cysts have seen countless cases where symptoms resolved but in the UK the line is always "they're just an incidental finding".
That’s very interesting. Do you feel that your symptoms could be related to your cyst?
The Neuro Muscular Therapist that we see privately has shown us medical diagrams of the different parts of the brain and the long list of symptoms that can occur when there is a problem in that area. From this, we have been able to pinpoint many illnesses and ailments that my daughter has had through the years that could be linked to her cyst growing.
Completely but no hope of getting NHS to get on board with the new research and treat it. They won't operate unless its causing hydrocephalus which it isn't. Guess i just have to live with double vision and head pressure x
I've become resigned to it now after six years. Its shocking how FND seems to close so many doors. Based in Peterborough. Just trying to live the best life I can in spite of it all x
My daughter has an urgent neurology referral, so we will find out more then. Her health has declined in the last 6 months so the very least they can do is repeat the MRI in case the cyst has grown in size or ruptured.
It will be helpful to have MRI repeated. Mine has fortunately remained constant in size, though ultimately its still taking up 8x9x10mm of brain space. Its a continual source of frustration to me when dealing with neurology? I feel lile asking if they'd like something the size of a malteser in their brain.
My husband is in remission from Myasthenia Gravis and when he was at his worst, he had debilitating double vision. He was given Mestinon (Pyridostigmine) and it helped alleviate the vision issues straight away. It’s obviously completely different to what you’ve got, but I wonder if it could help you?
Don't laugh! Myasthenia Gravis has always been a consideration. The probldm is acetylcholine blood tests are negative (but a huge percentage of MG patients are). The other antibody tests weren't conducted. Neither was the SFEMG electrical nerve fibre tests.My last gp before she retired found a loop hole to give me mestinon which didn't resolve double vision enturely but did massively improve things.
So she wrote back to neurology asking for them to reinvestigate more fully Myasthenia given that a positive response to mestinon is deemed diagnostic.
Their response: Who told you to start mestinon? She has FND. Any improvement will likely be a placebo effect.
She was so mad on my behalf and was researching people who could properly rule out both MS, MG and Mitochondrial Disease. Then she retired. Some days I cpuld cry at the level of gaslighting that has gone on. FND seens to be the go to duagnosis now for any female with even a slight history of anxiety. Its so wrong
Freud began with Hysteria, then the bundle of unresolved symptoms became Conversion Disorder, then PNI: psychoneuroimmunology. And finally, FND.
I may prefer PNI as it recognizes the neurobiology that verifies that physical symptoms are the body's response to stress and trauma. Stress, anxiety, depression and trauma are treatable.
What is unknown is how some bodies respond so differently. We are not crazy or imagining or producing symptoms. Our immune system and emotions are interacting in a manner no one understands. What people do not understand, they label evil or crazy.
Fifty years ago we would still suffer without any access to any medical care. What we have is inadequate to solve our symptoms, but we have more information than those before us.
Thank you for posting. I regret you had the scare of MG and happy for you both that he is in remission. I suspect that when medicine finally chooses to pay attention they will find some connection between all the "weird" symptoms and tragic neurological events.
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Is it FND? Do I have rights to request other elimination tests?
WARNING: If you have FND and live in UK
why are dr’s so quick to say you have fnd
