Brain cyst

[Amanda556]

I recently got told I have a brain cyst have to have my second mri scan and see someone at the hosptail . I was just wondering if anyone else had any experience of the brain cyst

[BellaC79]

Hi Amanda 556, I have an arachnoid cyst and a rather rare cavum septum pellucidum with a cyst inside. Mine were incidental findings on an MRI. However I had an initial CT scan and then they kept me in as an inpatient to confirm by MRI. Do you have any symptoms of concern?

I was told I was most probably born with both.

[Amanda556 in reply to BellaC79]

I have blurry eye sight and dizziness and pains in the head

[BellaC79 in reply to Amanda556]

Yes I too had three migraines ( never had previously) blurred vision in right eye which lasted 4 months. Have since learnt it's a scotoma. So now my vision is changed in the right eye and I need glasses. I also have positional headaches daily.

[Amanda556 in reply to BellaC79]

Do they offer any surgery or any treatment ?

[BellaC79 in reply to Amanda556]

At present I have seen a private neurologist who isn't concerned about the cyst. He's more concerned I have a chairi 1 malformation disrupting my cerebral spinal flow and causing positional headaches. All I would say is I was in hospital as an inpatient being reviewed by neurosurgeons who reassured me that if I needed any kind of surgery it would be done. They let me go and said I'd see a consultant three months on I'm still waiting so I'm so thankful I went privately. The hardest thing is the waiting and them keeping you informed. As I have found the NHS has been not been the best with their communication.

Perhaps your GP could advise how long the wait would be to see a specialist?

I hope you don't have to wait too long for the next scan I know mine was 6 long weeks.

[MummytoM in reply to Amanda556]

Hi Amanda sorry to just jump on your post but I’m currently experiencing these symptoms too do you have any other symptoms at all? I’ve been seeing my gp for 6 months now and it’s not getting any better I’ve been suffering from dizziness/lightheadedness I feel like I’m going to pass out all the time just about, intense headaches/head pain at the lower back of my head and eye pain also ear problems extreme fatigue to the point I struggle to function and my legs have started getting weak and I struggle to walk sometimes and feeling unwell and weak I’m so pale now aswell I just look ill compared to how I was this time last year my Dr seems to think FND but on my post someone mentioned I had symptoms of a brain cyst so I done some searching of symptoms and I seem to have quite a lot of them I’ve had a CT and they didn’t see anything on that it was without contrast and I had an MRI without contrast the other week just waiting on results now but just wondering if you have any more symptoms at all I’m loosing my mind and really struggling feeling like I’m just being palmed off😣x

[ellamental]

Hi Amanda, Mummyto M and BellaC79. I also have a cyst in my brain. My language has been the main problem (word finding, not being able to finish sentences when I think I have finished them etc). It was embarrassing when in shops etc and I would ask for the wrong thing but I have learnt to keep it simple and say language problems. I had a CT scan and then an MRI and then an MRI with gadolinium. I thought MRIs were MRIs but apparently not and the top tesler is the one (at Oxfords JR Hospital and probably others) or as one Dr said it is like looking at an out of focus photo. The biggest thing is the waiting, as you will know, as this sent me slightly demented! I had been told that the cyst was probably leaning on the bit of the brain that is about language and so, in my mind, brain surgery was the only solution and this huge amount of stress was AWFUL added to the constant cancellations of neurosurgeon appointments. In the end we went to see the top banana at the JR hospital (Dr Cudlip) privately within a few days and it was the best £300 spent. He sent me for the last scan and it showed that while it was not touching the other areas it was close so for now we are going to watch and wait and I will be have an MRI for the next couple of years to see if it has grown. He also mentioned FND and has organised for me to see a neurologist on the Nhs but at the JR again even though we live in Warwickshire. I have not really done my homework on FND yet.. do any of you know much about it?

[Alienbunnies in reply to ellamental]

Hi. I’ve just read your comment while searching for connections between FND & arachnoid cysts.

My 18yr old daughter was diagnosed with FND in May this year after becoming suddenly ill with stroke symptoms. On the CT & MRI scans they did in hospital they found a 3.5 x 2.6cm right temporal arachnoid cyst (an incidental finding which they said was no concern). She has problems walking, dizziness, and often her speech is affected. In the last 6 months she has got gradually worse and is really struggling with daily living and mobility.

FND seems to be an umbrella term for neurological issues that are undiagnosed as far as we can see. There is a lot of talk about your anxiety and stress levels, and how you can improve your symptoms by chilling out more. (They put it more medically than that!). Then they discharge you and tell you to look at a website. No follow up. My daughter has chilled out for 6 months, has had private psychotherapy (NHS talking therapy waitlist was at least 8 months). She was supposed to have NHS physiotherapy, but they sent an OT to the house who told her she was walking wrong (it was the only way she could walk) and said she should pace herself and increase daily walks by a minute every few days to build up her walking time. My daughter was given one session of “neuro physio” which involved someone looking at her walking and saying “you look like you’re doing the right things so I don’t need to see you again”. The OT visited two more times and then discharged her.

We are now paying for a Neuro Muscular Therapist who is a zhealth practitioner. Look them up on their website and instagram. He has major concerns about the cyst causing the symptoms and has urged us to get a second scan as soon as possible. We do not trust that the NHS has enough investment in FND - it’s one of those things that doesn’t get the research.

We’re a little lost, just hoping for a positive outcome.

Did you see anyone about FND since your original comment?

How easy was it to get a private consultation with a neurologist at the John Radcliffe? We’re only in Wiltshire, so we can get there.

[ellamental in reply to Alienbunnies]

Hi. I am sorry to hear your daughter has had such a hard time of it and with little support. I have not really done anything about the FND as since writing that post the biggest problem has been ongoing migraines which my husband thinks is to do with the cyst but I am not sure and the main symptom is still language as well as spinny rooms but on the whole I am a lot better now that I am on a migraine cocktail of meds. Dr Cudlip, who is head of Neurology at the JR Oxford was very easy to get to see .. not a long wait for an appt and very thorough. He did the consultation (1/2 hr) and we asked if we could have the MRI at Oxford on the NHS which happened a few weeks later and two weeks after that he phoned to explain the results so £600 all together. You will find him here....oxfordneurosurgeon.com If you can pay for the MRI I think you can have it within a few days. I will look up Neuro Muscular Therapist who is a zhealth practitioner. Let me know how it goes.

[Alienbunnies in reply to ellamental]

Thank you so much for the info. I’m going straight on to the website!

Good luck with your health journey.