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
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ElJennin
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I’m in a similar situation to you but a lot older (53 but think I’m still 18) and my cyst is in the front right periorbital region so produces different side effects (cognitive issues/tinnitus like noises/pressure headaches/control issues with parts of my body/tremors/extreme brain fog). I am about to get rereferred to Neurology having been basically fobbed off by the first one I saw who said none of my symptoms were neurological and my MRI would show nothing. He was wrong and then he sacked me back to my doctor.
When I first started getting symptoms I told everyone my brain felt wrong at the front. And I was right.
Anyway, in response to you I believe that mostly with a cyst it is a matter of watchful waiting. So there will be more MRI/CT scans to keep a check on the growth.
Don’t be fobbed off by the excuse that something so small couldn’t cause all your symptoms. Mine is small yet I have a multitude of symptoms that are, quite frankly, ruining my life ( or would if I let them, I am grateful for every day on this earth)and have been told nothing can be done, especially with Covid being around and all the issues concerning that.
But as my dear dad put it ‘your brain fits neatly into your skull and there isn’t much room for anything else’. So even small a cyst can produce a number of worrying symptoms. I’ve got a VW campervan and a car at my door and haven’t driven either for 10 months due to the way the cyst is making me feel, I’ve had to give up a job I loved and am just about managing to still remain self employed.
Firstly I would write down all of your symptoms. Secondly I would write down all the ways this is affecting your life and what you were like before, how much this has impacted your life. Thirdly do not be fobbed off...if the symptoms are severely impacting your life say so and that you want to know how this will be managed now and in the future. Believe in yourself and trust your intuition...you know your own body and when something is wrong.
I had to fight to get an MRI due to the fact I have other issues ( MCTD...in remission/fibromyalgia/brittle asthma, the list goes on)and my Gp kept saying my symptoms were fibro or MCTD based but my rheumatologist said otherwise. After referral to an Audiologist due to the fact I rapidly lost some of my hearing and balance, she told me I needed to see a Neurologist ( who had already referred me back to my doctor). So be prepared for the runaround.
Every day, however I am feeling, I enjoy the journey and enjoy the patience it is teaching me.
Sorry it's taken me so long to reply! It's nice to know someone else is going through something similar to me! Thank you, I've taken your advice and written down everything! Best wishes, El x
Diagnosed with pineal gland cyst about 3 years ago after mri scan , then had follow up scan 6 months later then a further one with contrast a year later now due scan 2 yearly just to check but yes tinnitus is bad and feeling off pressure left side head above my ear but was 50 when diagnosed and so far no change in size
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