22 year old female with pineal brain cyst. Help wanted!

[ElJennin]

Hello,

I'm not sure whether this is the right place to post, but I am desperate and wanting some help/someone to talk to about this.

I'll begin with a little background history.

For the past year or so I have been treated for symptoms of fibromyalgia; headaches, brain fog, extreme exhaustion, muscle aches and numbness, chest pains and many more. I struggled throughout university with this but accounted it for stress, so put it on the backburner. Once I had finished Uni and came home for a well deserved rest, these health problems did not go away.

I asked my first doctor for an MRI scan, as part of me had this niggling feeling in the back of my head (no pun intended) that there was something wrong. My request was declined by the hospital, due to them thinking it would be due to fibromyalgia.

My appointment with the rheumatologist was cancelled by the hospital, as apparently my case wasn't severe enough to warrant investigation.

I went back to my local GP again, now through another doctor, and insisted that I had an MRI. She was brilliant and covered all basics of my health for me: blood tests, stool and urine samples, which showed I had a bacterial infection in my stomach. After an intense week of antibiotics, I felt better, but still struggled with tiredness, brain fog, aches and headaches, which had begun to turn into migraines. I went to the MRI scan she set up for me, which showed that I have a cyst on the pineal gland on my brain.

Obviously this came as a very big shock, only being 22 years old and previously being rather healthy. I spoke to my GP who told me not to worry, that it is benign, but since I'm having these symptoms/side effects, she would refer me on to a neurologist.

This is why I'm posting this in here. My appointment isn't until November, and I have a few questions that I would like answering, if at all possible.

1> what are the treatment options? I have seen through research there is the option of removal, radiation or leaving it. I am under the impression that since I am having these side effects, which are affecting my daily life, that I will be receiving some form of treatment, rather than just monitoring it over time.

2> When researching, it said that the cyst is pressing on my Pineal Gland, which is responsible for hormones and sleep patterns. Now looking back, this completely accounts for how I've been feeling. Furthermore, the websites I've been looking at say that most cysts over 2cm gets removed, whereas my cyst is 1.2cm. What should I expect treatment wise, if any?

3> Finally, since this is completely unknown territory to me, I would like help in suggestions of questions to ask the neuro consultant when I see them. I want to be prepared for my phone consult, and not want to leave the consult thinking "oh I wish I'd asked that."

Thank you for any and all help in advance!

Eleanor

[Tumo Pioneer]

Hi Eljennin, I was poorly like you for 6 years before I was diagnosed with a benign Meningioma, Doctors said it was menopause which I accepted as I was in my 50s. My optician referred me to hospital because my sight became blurry and so my journey began. Write down anything you think you would like to know and take a pen and paper to write the answers down as when you come home it’s easy to forget what was said. I remember taking in an A4 paper and saying “ I’m going to ask some silly questions” to which my Neurosurgeon replied “ no question is silly” . Before I asked anything he talked me through loads of things I had written down, so my questions were answered. I asked lots of my friends what they would want to ask if they were me, which was helpful. Don’t go alone as it’s all very overwhelming. You have joined us here, which is brilliant too. Everyone is different and has different emotions and journeys but I believe we all understand each other. You are young and stronger than you think. Once I knew what was wrong it was a weight lifted off my shoulders as at last I knew I wasn’t going mad. I hope you can Trust your Neurologist/neurosurgeon as much as I trust mine. Waiting seems forever sometimes but mine always explains everything to me and he’s never let me down yet (even through Covid). I will think of things that I ask after work today and message you again. Take care stay positive and strong, you will get through this. xx

[ElJennin in reply to Tumo]

This has been so helpful, thank you did you receive treatment for your meningioma ? Hope all is well for you, yes any questions or advice is appreciated! Xx

[Tumo Pioneer in reply to ElJennin]

Yes I had a craniotomy to remove my Meningioma, unfortunately it regrew so was on watch and wait for over 3 years then had another tumour so 2nd craniotomy was done March 2020, I’m back at work now. I’m waiting for latest MRI scan results done 6 weeks ago to see if all ok. 🤞 I will message a few questions to you tomorrow that may be helpful when you go to see the neurologist xx

[Tumo Pioneer]

Hi, I haven’t forgotten about questions to ask, but I just didn’t have time yesterday and I’m at work today. I know your appointment is November so I will find some out over this weekend. I still have my own list somewhere as I kept and still keep everything in a folder. Will message you over the weekend. stay safe and strong 💪 x

[ElJennin in reply to Tumo]

That's great, thank you so much ❤️

[Shannon_TBTC Partner]

Hi ElJennin, I can imagine this must be quite a difficult and overwhelming time for you.

To answer some of your questions:

We have a range of information pages about the different types of treatment available. This also commons their common side effects- thebraintumourcharity.org/b... It is more specific to brain tumours rather than cysts but may be of interest.

We also have a page on questions to ask which can be found here- thebraintumourcharity.org/b... It can be really useful to take a copy of this to your next appointment!

Best wishes, Shannon

[Hidden]

Hi E, Firstly I want to say how brave and strong you are at your age to be dealing with so much. This obvious resilience will stand you in good stead for November and what follows. I do not have experience of pineal tumours as my daughter had germinomas. However, I can suggest you get yourself a really nice lined book that fits into your handbag and inside write down your medical records number, Gp details, any hospital consultant details phone number emails etc. At the front have a chronological account of your symptoms and appointments so far. At the back date and write down questions you wish to ask your consultant/s at each appointment. Also keep a list of medications - dosages, times you take and date of the month you need to reorder from pharmacy. We had a book like this with a photo of or daughter on the back to remind us of her as a person, not just a medical mystery! It had helped enormously with navigating her brain tumour journey. She is wee bit younger than you and finished treatment (successfully) living life to the full, but the little green book still goes with her to all appointments and reminds her of how far she has come. Keep strong and I wish you all the best in November.

[ElJennin in reply to Hidden]

Thank you so much this is really helpful, I've started to note things down in my diary now!