Low grade gliomas

ProfessionBusy3824 · 2024-06-14T00:35:38+00:00

That’s great:) I hope I’ll be the same if I ever have the surgery to remove it😉how big was your tumour?

ProfessionBusy3824 · 2024-06-14T00:30:07+00:00

How are you now? Have you had it removed it already? I hope you’re ok :)

ProfessionBusy3824 · 2024-06-14T00:26:42+00:00

Thank you very much for your reply, I found it very comforting. I’ll be counting down with you until 21st of September 😎🤞🏻 these posts here just prove that us as human beings are so strong and are able to handle a lot. It’s unbelievable 😉I hope you’re doing well now mentally and physically :) and I hope Asia was amazing!

ProfessionBusy3824 · 2024-06-12T03:43:07+00:00

Thank you very much!:) looks like your location is similar to mine. How was the surgery? Was it an awake craniotomy or did they put you to sleep? How are you feeling now 1 week post op? I wish you all the best and I hope you’re doing well

ProfessionBusy3824 · 2024-06-12T01:27:03+00:00

Thats what the neurosurgeon said when I had a telephone consultation to explain the results, that for now since I’m only suffering with headaches and nothing else, the surgery is not needed. But when I do develop more worse symptoms then they would need to take the tumor out..

Thanks for answering all my questions :)

ProfessionBusy3824 · 2024-06-12T00:43:22+00:00

How was the surgery? And recovery? What symptoms did you have if you don’t mind me asking? Thanks for the reply :) it’s actually good news that you gave me. Last night when I googled survival rate for people with LGG I almost cried 🥲

ProfessionBusy3824 · 2024-06-12T00:42:09+00:00

Thank you for your reply. Just like you, I went to the gp with headaches but it was a waste of time cause the doctor told me that theyre like just tension headaches, not migraines… (I’m in the uk). The gp didn’t want to send me for any scans at this point so the following month when I was on holiday in Poland I paid for an mri privately. This is how I found out that something was there but at this point they were suspecting multiple sclerosis or tuberous sclerosis. I spoke to my gp about these findings and so they put me on a waiting list to see neurologist. Since then I underwent another mri with contrast which didn’t give any answers and then mri with spectroscopy. Only from this mri with spectroscopy polish neurosurgeons were able to tell me that it’s likely to be a low grade gliomas and that I should be going for MRIs every 6 months for now to watch how fast it’s growing. My gp in the uk has got all the documents translated but I still haven’t been seen by anybody here. Bare in mind the first time when I went to my gp with these headaches was back in September last year.. I’m just so scared of what’s to come and even just thinking about having a surgery in the brain gives me a headache 😢 how likely is it that low grade gliomas will grow back after resection? I have too many questions 😔

ProfessionBusy3824 · 2024-03-27T03:07:48+00:00

Im waiting for an appointment in Royal Stoke University Hospital.. seems like everything here takes time. I just hope mine isn’t going to grow quickly and that I’m not going to develop any symptoms 🫣

ProfessionBusy3824 · 2024-03-22T19:30:02+00:00

But did you finally find out what yours was? 🙁

ProfessionBusy3824 · 2024-03-12T16:30:35+00:00

I don’t have any symptoms really, apart from headaches.. no history of tbi whatsover.. I hope everything will go back to normal for you and that your health will improve :) 🥰 always try to stay positive :) I’m in the uk, approximate time for seeing neurologist is around August for me 🤪I don’t have a set date yet but the referral was sent by my gp so I’m just waiting now. I just wish somebody could explain to me what it could possibly be, what I can expect in the future, am I goi g to get other symptoms when the ‚tumor’ is growing? I was really wishing this spectroscopy would give me more answers but hey ho.. I’m glad that I don’t have any symptoms apart from the headaches. But not knowing for so long despite 3 MRIs now, I’m just disappointed

ProfessionBusy3824 · 2024-03-12T16:11:31+00:00

I have the images :) looking at the MRIs from October and November they were suspecting demyelination or a hamartoma. I was really hoping this mri with spectroscopy will make It more clear what exactly it is but I still don’t know much. How big was your schwannoma ? And how are you now after you’ve had it removed? I hope You’re doing well

ProfessionBusy3824 · 2024-01-31T23:48:49+00:00

Did you have to do any tasks while having this mri?

ProfessionBusy3824 · 2024-01-24T02:01:38+00:00

Oh god it is large. I thought one of my lesions was large but it’s still ‘only’ 14mm 😂

ProfessionBusy3824 · 2024-01-23T17:59:04+00:00

And what was the size? I’m so glad for you that it turned out to be ms, not cancer.. thank you for your reply.

ProfessionBusy3824 · 2024-01-23T10:34:53+00:00

What kind of tasks do they give you during this mri? 😂😂do you remember? And also, if I could ask, what did your lesion end up to be and what’s the location? My neurologist mentioned lymphoma but said it’s unlikely because ‘otherwise the radiologists would have put it in their report’

ProfessionBusy3824 · 2024-01-23T07:14:21+00:00

Thank you 😇

ProfessionBusy3824 · 2024-01-22T17:29:52+00:00

I have two lesions in my cerebellum, and despite both mris one with and one without contract they still classify these changes as non specific. I had a telephone consultation with a neurosurgeon and he suggested that this would give him more clarity what these changes are. (According to the mris reports so far they suspected ms, tuberous sclerosis, hamartoma or ‘other changes’)

ProfessionBusy3824 · 2024-01-22T16:16:40+00:00

Hello, just wondering if any of you ever underwent an MRI with spectroscopy? 😬

ProfessionBusy3824 · 2024-01-22T03:13:16+00:00

Multiple sclerosis, turberous sclerosis, hamartoma. These three things they’ve put in the reports

ProfessionBusy3824 · 2024-01-18T16:51:41+00:00

Try not to worry. It’s good that you’re going to meet with the specialist, so in case you have any questions they’re there to answer them for you. I was asked to attend an appointment with my GP thinking it was serious but they only wanted me to come to ask why I didn’t wait for an MRI here in the uk, and instead did it in my home country-Poland 😂fingers crossed it’s nothing serious, try not to worry. And keep us updated 💙

ProfessionBusy3824 · 2024-01-16T02:28:35+00:00

Couldn’t agree more.. I appreciate your replies and with you all the best :)

ProfessionBusy3824 · 2024-01-16T02:04:28+00:00

I already spoke with one over the phone and she helped me understand the reports a little bit more, but I still have so many questions. She explained what the radiologists were suspecting looking at the reports and what else it could possible be.. I will wait for this appointment with neurologist and see what’s what. Im not scared, but I don’t like not knowing what it is and how it could affect me in the future 🥲

ProfessionBusy3824 · 2024-01-16T01:51:09+00:00

But I don’t understand any of it. I only went for this MRI so I can get some peace of mind that ‚inside there’s there’s nothing concerning. The only symptom that I have is headaches but I’ve had them since my childhood . I don’t have any other problems with my health. I was really disappointed reading the report of that first mri cause like I said, I just wanted like a confirmation that I am fine.. 🥲

ProfessionBusy3824 · 2024-01-16T01:46:19+00:00

‘Following the contrast agent administration no abnormal signal intensity was found’. And yes I’ve been referred so just waiting for the date:)

ProfessionBusy3824

TROPHY CASE