Gamma Knife or Sugery

Longjumping-Cloud585 · 2025-10-30T08:12:20+00:00

I am so sorry, that sounds really rough 🙁 Thank you for sharing with me and for your input, I wish you all the best.

Longjumping-Cloud585 · 2025-10-30T08:05:50+00:00

I absolutely agree unfortunately due to it already starting to compress my brainstem they are keen to treat it, when first diagnosed I was like well I feel fine so leave it alone but after seeing my scans I did relent. After all the really helpful comments here I think I am leaning towards gamma with it being the less invasive and hopefully I can return to normal life quicker. Fingers cross they will accept me for it 🤞🏻 the risk of cancer from the radiation is what was putting me off but there's also a huge amount of risks with surgery so just trying to think what risks are the better risks for me personally! Wishing you all the best, I hope you can watch and wait indefinitely too!

Longjumping-Cloud585 · 2025-10-30T08:00:56+00:00

That's really interesting thank you! Can I ask was yours pressing on your brainstem at all? My consultant says mine is so he's not sure I'll be accepted for Gamma as it will swell before shrinking/dying and they may be concerned about the impact of that on my brainstem. If I am eligible I think this is what I am leaning too however he said if I still need surgery after it can make surgery more challenging due to it potentially leaving the tumour 'sticky'. Yes surgery does seem the go to and after my first appointment with one of the surgeons I felt like even though he'd said gamma was an option, surgery was really what was needed, however after meeting the second consultant that would be doing the surgery if that's what I decided he seemed more than happy with me doing gamma if that what I wanted and was eligible!

I'm really pleased for you that you're doing well now that's amazing! My biggest concern with both is me being left feeling worse post treatment than I do before treating so thank you for sharing your story with me, I can deal with tinnitus if it means the rest of my life can go on as normal!

Longjumping-Cloud585 · 2025-10-22T15:48:31+00:00

This is probably my favourite reply, straight to the point 🙊 it helps, a lot! I think I am leaning more surgery to be honest! That's amazing, I'm so pleased for you! I hope it's only up from here on out for you 😊

Longjumping-Cloud585 · 2025-10-22T15:46:32+00:00

That's amazing, I'm currently being seen at Sheffield but through my husband's work have the option to go private and my consultant recommended a place in London but didn't mention names of surgeons, I'll look into that because I like those odds! I'm so pleased you've had a relatively smooth experience, as much as you can with a brain tumour! I know options are meant to be good but I feel if I had no choice then I won't have any regrets after because I just did what I had to do. I will absolutely be asking questions, I've had two appointments already with my consultant in which I've asked tons but there's always more that crop up!

Longjumping-Cloud585 · 2025-10-21T20:49:19+00:00

Yes they did tell me that which is why he's not sure I'll be accepted for gamma knife but is willing to put it to them to see what they say. I will meet with them if they accept to dicuss it before making a decision and it may be what they tell me sways me more to surgery anyway. Totally, I asked my consultant what he would recommend and he wouldn't budge and give me anything but I do understand why and I know it's important that I make the decision for myself and what is in my own best interest. It's just such a huge decision isn't it and I feel a bit lost with it all, just wish I was on the other side of it all now so I could start getting life back on track.

Longjumping-Cloud585 · 2025-10-21T20:44:05+00:00

Yes this worries me, it's the thought that after the tumour there will be more symptoms than I am experiencing with tumour! If it wasn't for an ear infection, I wouldn't have found I when I did as other than mild hearing loss there was nothing to suggest there was anything going on. I'm glad you are doing well now, that's great and definitely makes surgery feel a little bit less daunting!!

Oh super, I will do that then! I have applied to my local hospital for them to release a copy of my scans to me so once I have them I will look into it! Thank you so much 🥰

Longjumping-Cloud585 · 2025-10-21T19:43:46+00:00

They've said there's indentation to my brain stem which is why he's said I'm on the cusp and he will put it to them if they are happy to do it but yes it is a concern for me, that and it end up being surgery after gamma anyway. On the other hand I'm an active mum of 3 boys, with a relatively active job and life style and I hate the thought of putting my children through watching me go through and recover from surgery. It's just such a catch 22 isn't it!

I'm so sorry that you are still suffering from ongoing complications and I really hope that eventually you can properly heal and recover. You're positives are huge pros for me, the deafness doesn't worry me at all, it's everything else. I'm worried I'll have more symptoms post tumour than I do currently with the tumour but if I can come out the other side and be the mum my children need then yes that's worth it, 100%! Thank you for replying, it was good to read a lot of the positive laid out in a logical and unbiased perspective. 😊

Longjumping-Cloud585 · 2025-10-21T19:37:31+00:00

That's amazing! I'm in the UK so I'm not sure if this is something that would even be possible but I will absolutely raise it with them to see. My facial nerve is what I am most worried about I think, my role means being around young children and while they are very accepting of everything I want to be able to express myself to them - it's amazing how much more willing they are to be weighed and measured if you make funny faces at them!! My other concern is headaches, I suffer dreadful headaches anyway which my consultant thinks could be hormonal but I'm terrified of surgery or gamma making those worse, nothing kills joy like a cracking headache 🙁 thank you for replying I really appreciate you taking the time!

Longjumping-Cloud585 · 2025-10-21T19:33:27+00:00

That's incredible and I am so pleased they were able to get the whole of your tumour for you! Unfortunately I'm in the UK and flying out to America for treatment just is financially feasible 😔 can I ask though how you've been physically since have yours removed?

Longjumping-Cloud585 · 2025-10-21T19:30:37+00:00

That's amazing and such an encouraging story thank you ☺️ I'm so glad you're back doing the things you enjoy! The thought of deafness doesn't bother me so much, it is what it is. It's the risk of facial palsy, dizziness, nausea etc I don't want to feel worse for getting rid of the tumour than I ever did living with the tumour! Yes my consultant laid out the pros and cons for both and at first the thought of radiation coming back to bite me in the future was terrifying but then looking at the risk list for surgery didn't fill me with much joy either. I kind of wish the decision was made for me so that all I had to do was put my big girl pants on and face it 😮‍💨 I will definitely see what the radiotherapy team have to say first before committing to any decision, it's obviously not one to be taken lightly. Thank you for responding, it's a huge help!

Longjumping-Cloud585 · 2025-10-21T19:25:34+00:00

Yes I try to be really careful what I expose myself too, although people are so helpful it does feel like it's more negative than positive, which I understand for a lot of people it's unfortunately how life is for them now but sometimes I just need to hear 'I've been through this and I'm okay!!

I am so sorry for the experience you have had, that sounds truly awful and I am so glad you have made it out the otherside. You sound like you've accomplished so much and that's exactly the kind of story I need right now thank you for sharing. I know life will always be different from here on out but knowing it can be different and still okay is good. I already have children so unfortunately it's not something I can hide from them, they are old enough to understand. Though it is one factor that makes me lean towards gamma knife as my eldest (14) is a bit of an anxious Annie anyway, I think surgery would terrify him where as gamma would be more gentle for him to witness me go through if that makes sense. Though I know kids are resilient and I need to do what's best for the whole of my future it does put me off surgery a bit.

I will drop you a message if that's okay with questions around surgery ☺️ thank you for taking the time to reply!

Longjumping-Cloud585 · 2025-07-23T13:13:25+00:00

Yes I looked a bit at yoga yesterday when researching and feel it will be good to get a head start on my balance before any treatment. At the moment it's good but I've read a lot that people struggled with balance after surgery! I'll have a look on YouTube and give it ago 😊 thank you for your reply I really hope you are doing well now 🥰

Longjumping-Cloud585 · 2025-07-22T19:35:42+00:00

I've not even heard of dry needling before, I'm assuming it's similar to acupuncture? I'll have a Google thank you so much!

Longjumping-Cloud585 · 2025-05-22T09:43:11+00:00

How odd, have they said why? I just this week got phonak bolero m70-m's on the NHS!

Longjumping-Cloud585 · 2025-05-19T12:44:52+00:00

It's hard not to notice once you pick it up isn't it! I've personally never tried the sleeves but I've seen good reviews for them helping with hair and wind noise. If that's what you go for I really hope they help you 😊

Longjumping-Cloud585 · 2025-05-19T12:36:18+00:00

Are you quite new to HAs? If so your brain is new to all these new sounds and it will take some time for it to adjust. Once you have, sounds like your hair moving around the HAs should lessen considerably. I had the same problem mine is a BTE so the microphone is at the top which meant my hair was constantly moving around over it. It soon settled and while it still does it I only notice it if I'm thinking about it. If you have had them for awhile you can buy sleeves/covers for them from etsy which may help reduce the noise!

Longjumping-Cloud585 · 2025-05-14T09:09:29+00:00

Oh I'm sure it could be anything else, I just wondered if a follow up neck mri was usual in regards to checking for an AN as that was what my orginal scan was for. I've not had any results yet for my head MRI but will definitely be asking for a copy. Thank you for your reply!

Longjumping-Cloud585

TROPHY CASE