My story of trying to find a get the right treatment

[lannelle]

My name is lanelle Hardwick and I live with a pineal cyst and a bilobed cyst on my brain. It is so frustrating trying to get across to the health department of this expertise, I am currently in the public system of neurological wait list as catergory 2 and I am constantly suffering symptoms of headaches ,migraines, fatigue, and anxieties. My first cyst on the pineal region is measuring to be 13mm x13mm x 7 transverse and my other on the charlformation 1 is 20mm x20mm x 7 transverse please I ask kindly to get some feedback on this situation. Yours sincerely lanelle Hardwick

[twice]

Hi, I had surgery 6 months ago to remove a large posterior fossa arachnoid cyst My cyst was caused by a tbi 4 years ago. When the cyst was first discovered I was told by neurologist that they were just going to do regular scans to monitor it. Eventually it started to compress the cerebellum and brainstem and the symptoms I was getting were constant headaches severe balance and coordination problems. Which haven't got any better since surgery. Although it's different cyst to what you have I can understand how you must be feeling right now , I think if my cyst was removed before it started compressing brain structures I wouldn't be in the position I am now. But for me I had balance and other issues from my TBI in 2016 .

I know how frustrating it can be trying to get the right advice and treatment

And my opinion for what it's worth is that if there is something on the brain that shouldn't be there it should be removed straight away,

I hope things get resolved for you soon.

Call the headway helpline and speak to them, they will explain things to you far better than I can.

Take care.

[lannelle in reply to twice]

O found out that the condition of the brain arachnoid cyst and cellubra I'm being referred to neurosurgeon. Please give me any feedback yours sincerely lanelle Hardwick

[twice in reply to lannelle]

Hi, with arachnoid cyst it all depends on the size it is and if it's putting any pressure on any brain structure, mine wasn't at first but was gradually getting bigger and then started to compress parts of my brain, if they don't compress your brain then they will generally leave it in situ and monitor it with MRI scans, which I personally don't think is right but then I'm not a neurosurgeon. There are various ways to remove them depending on size and location, they can be drained by a fenestration procedure which is not invasive procedure but I had to have a craniotomy operation because they had to remove the complete cyst and not just drain it, but this is just my experience with my cyst and the neurosurgeon will explain all about what needs or doesn't need to be done with yours.

Take care

[lannelle in reply to lannelle]

Well mine is a peg like shaped that is 20 ml X 20 mm metres x 20 mm x 7 transverse millimetres it is on the charlformatiom one and it is pressing on the Tonssiler cellubra cause compression then on the pineal gland which is 13 mm x 13 mm x 7 millimetres transverse causing pressure on the tectum plate what size was yours

[twice in reply to lannelle]

Hi, mine was 6.2cm x 5.6cm x4cm. But you seem to have chiari malformation and I haven't got that, my arachnoid cyst was putting pressure on my cerebellum only. The cyst originated in the subarachnoid space of my brain following my injury, it then continued to expand over time with csf fluid. Has neurology given you any information on what is going to happen next

[lannelle in reply to lannelle]

Hey well I have had a few seizures since I posted last but still awAiting to hear from the referral to sue Charles Gardner hospital to see a neurosurgeon teem for my chairai Arnold Malformation and the pineal gland cyst ,😔😔👎 🌼 but yeh I had the chance to meet some real phonies neurologist yet to have met a serious real nyerogalist

[twice in reply to lannelle]

Sorry you are having seizures, hopefully your gp and hospital are aware of this.

Everything is way behind because of covid and although that probably doesn't make you feel any better about the situation you are in at the moment all you can do is keep chasing your referral up with the hospital and also with your gp. It's important that they know what has been happening to you recently and make sure they know all of the symptoms you are experiencing now, hopefully you have got some support to help you and push this forward on your behalf. It's incredible that this is how people get treated with some brain conditions. Try and be a polite nuisance with them.

[cat3]

Hi Lannelle and welcome. The access to medical care is a chaotic lottery since the NHS crisis has worsened month on month. We can only hope the Covid vaccine is the light at the end of this scary tunnel and, that if numbers of infections decrease, the hospitals and staff will be gradually be freed up for follow-up clinics and other essential treatments.

The unprecedented strain on the system has left a trail of hardship and suffering for countless folk with urgent needs, and SO many of us are collectively holding our breath 'til signs of normality reappear. I'm appalled by some of the neglect this pandemic has caused but I know it's been mostly unavoidable.

I hope you'll be seen before too long but, in the meantime, maybe call the Headway helpline for support and up to date information. The number is freephone 0808 800 2244 during office hours. Best wishes, Cat.....