Newly Diagnosed

[Fairy-Princess]

Hi,

Just been given result to my MRI. GP is referring me to Kings College so I’m just sitting here waiting. I’m in complete shock. I thought I had long Covid symptoms! Any advice etc would be appreciated. I’m an emotional wreck right now!

[Daisymeadow]

I can relate to the shock. It wasn’t news I was expecting to hear either. I’m still in the waiting to be seen by the specialist after diagnosis stage. Waiting is hard.!! I hope you get seen soon and get some answers. Everyone who had travelled this road before us is so very helpful and supportive. Hang in there ❤️

[Fairy-Princess in reply to Daisymeadow]

Thank you so much. I was told by the GP that they may look at my scan on Tuesday but if I don’t make the MDT list then should be the following Tuesday. I’m so glad I’ve found this forum. I hope you get your answers soon as well. Maybe we can travel down this bumpy road together. Christina x

[Daisymeadow in reply to Fairy-Princess]

This forum has been so helpful. Just reading everyone’s experiences has been great. I know everyone has a different journey with this, so stay positive and hope for the best. Which hospital have you been referred to? I’m waiting to be seen in Liverpool. Keep us updated.Emma x

[Fairy-Princess in reply to Daisymeadow]

I’ve had a read of previous posts and yes you’re right reading some of the experiences is helping me calm down a bit. I’ve been referred to Kings College London. I’ll keep updating on here. I hope you get seen soon as well. Sending you positive thoughts. X ❤️

[linziejsaddle in reply to Fairy-Princess]

🙏♥️🙏

[Hidden]

Totally natural to feel in shock especially as you thought it was long covid! This is the worst bit, as soon as you see a specialist and have a plan you’ll feel a lot better. I’ve just had surgery (End of May) and I’m absolutely fine, I almost completely forget it happened!! You will be OK, promise you!

[Fairy-Princess in reply to Hidden]

So pleased things have turned out so well for you and you are on the mend. It’s great to see some positive outcomes. The only symptoms I had was numbness on my right side of face, lips and tongue. I have altered taste/smell from covid so thought it was that causing my numbness. I had a bit of fullness in my ear and dumbed down hearing but can still hear! Thanks you for your lovely words. Christina x

[Hidden in reply to Fairy-Princess]

I had very odd symptoms too. I think although the most common symptoms are tinnitus and hearing loss from reading around it does seem like often symptoms get mistaken for sinus or dental issues (I think it depends where on the nerve the tumour is). But that’s great that they’ve clocked it before the symptoms have got too troublesome. I’m sure they will come up with a plan and you’ll feel very reassured. Although it sounds scary, I must say, I’d rather a benign tumour than long covid, I know a few people who had that and it sounds awful, this shouldn’t really impact your quality of life too much hopefully (it’s just the knowing it’s there that can be a bit scary, but you soon forget). Alice x

[linziejsaddle in reply to Hidden]

Well done on your progress xxx gbs xxx

[Kellyc in reply to Hidden]

Can you tell me about your surgery snd where you went? It was to remove AN? Did it effect tinnitus it hearing?

[Hidden in reply to Kellyc]

Hi, yes. It was to remove most of the AN. I had it at Southmead Hospital in Bristol. Tinnitus has sorta stayed the same maybe slightly quieter the remains hearing has gone.

[Kellyc in reply to Hidden]

Hope you are ok the tinnitus is the worst part!

[Hidden in reply to Kellyc]

Aw I’m fine thank you. I guess the tinnitus can be frustrating at times but I had vertigo and nausea pre-surgery and I found that much worse so I’m glad that has majorly reduced. I just ignore the tinnitus to be honest. If you still have hearing in your ear than I’m sure a hearing aid can help reduce the tinnitus so it may be worth speaking to your GP about it if it’s troubling you. Alice

[Fairy-Princess]

Thanks Alice. I agree long covid is a real issue. I know a few friends suffering badly. Hopefully I will get some more info and a plan soon. X

[Kellyc in reply to Fairy-Princess]

I have friends who swear the vaccine gave them tinnitus so I kind of feel that way too since it came right after. I want the AN removed but I’m scared of the risk and continued T also because they say that is in the brain.

[Hidden in reply to Kellyc]

I’ve gotta be honest Kelly, whilst watch and wait must be stressful. As someone who’s just had the surgery and recovered very well, I wouldn’t be opting for surgery unless I had to. The surgery is very unlikely to stop the tinnitus but it does come with a lot of potential complications such as facial paralysis, balance issues and more serious things. It sounds like you need some support with the tinnitus, the GP should refer you for that (I guess it would be to audiology). Whilst I can admit mine is irritating and I’d rather not have it I wouldn’t say it drastically reduces my quality of life, it’s just a bit of a nuisance really so I do believe it’s possible to live with it but perhaps you need a bit of extra support with that. Alice

[Kellyc in reply to Hidden]

Thank you. I think if can be safely done I just want the growth out. I think medicine that stimulates by Brain caused the tinnitus and I’ve heard it may not go away. I’m a but willing to risk some things though you get the growth out my ear feels full and hurts and Pops a lot!

[Hidden in reply to Kellyc]

Sorry to hear that it’s uncomfortable. As long as you make an informed choice about having surgery that’s the main thing ! All the best with it, Alice

[cromseye]

Hi , It is normal to have that feeling. Most of us passed from the same path . Waiting is really hard and sure you want to get seen soon , and you want to learn next step. I had also almost same story : GP -> MRI -> private ENT -> private ENT in skull base and neurotology -> 6 month monitoring -> MRI -> decided to wait 1 more year to monitor. I hope you get your answers soon as well and I hope you will get good news. also dont forget that whenever you need more details , you can share in here and many people will share their experience and support . also I will recommend you to try mindfulness - it may make these steps easier.

[Fairy-Princess in reply to cromseye]

Thank you so much for your kind words of support. I’ll look into mindfulness.

[Pinkrose1]

Hi Fairy-Princess,I can relate to how you feel as others can, it is hard and a real shock, I cried for months! Unfortunately I had a large acoustic neuroma but it was put back because they had to deal with stage 3 bowel cancer at the last minute. I've just had my neuroma surgery 12 days ago and it's incredible what the surgeons and hospital have done, they will be with you all the way. Easier said than done but try not to worry, I found the anxiety made things harder, stay positive and as upbeat as possible

[Fairy-Princess in reply to Pinkrose1]

Cancer and a brain tumour. That’s really tough but sounds like you are on back on track. You’re right I will try and stay positive and not scare myself by thinking too far ahead. So glad your surgery went well and I hope your recovery continues smoothly. 😀

[Pinkrose1 in reply to Fairy-Princess]

Thank you. Sure the same will be for you too

[Kellyc in reply to Pinkrose1]

Is your hearing ok after surgery? Did it help tinnitus. Pls give more info on surgery did our first in uk or us?

[Pinkrose1 in reply to Kellyc]

Hello, i've lost all hearing on that side but to be honest there isn't much difference to before the surgery as my hearing had gone due to the tumour. My tinnitus isn't so loud since the op which is a plus

[Kellyc in reply to Pinkrose1]

It seems like most people lose their hearing why? That’s upsetting too but the T is awful.

[Hidden in reply to Kellyc]

It’s because the priority of surgery is to remove as much of the tumour as possible but to preserve the facial nerve. The tumour is on the hearing/balance nerve so they peel the tumour away from the nerve and often damage it in the process. They do warn you pre surgery that it’s very likely to happen. It sounds like you’d benefit from some help with the tinnitus. Have you spoke to your GP about being referred? Alice

[Kristyll]

Hi I am positive we all suffered the initial shell shock but we are all here to tell the tale. Write all your questions down and discuss all, especially treatment options. If you have the pleasure of being a patient of Prof Saeed you have the very best and the nicest man. I know he has private patients but the hospital he was at was the Royal national TNE butI hear that has closed so not sure where he is now based. Good luck xx

[Kellyc]

Diagnosed with what??

[Fairy-Princess]

Hi Kelly, my GP organised an MRI because I thought I had long covid symptoms. Altered taste/smells and numbness down right side of face, lips and tongue. The scan shows an AN 20 mm x 26mm. The GP called it a Schwannoma. I’m now waiting to be referred to specialist.

[linziejsaddle]

Good luck sweetheart , remember you have friends to help you on your way and you are not alone , though I do feel your pain , we've all been there , just go with the attitude you are not going anywhere and fight for your right to be here . All the best , big virtual hug ((((,♥️))))

[Gardener21]

Hello… I was referred to Kings College in February this year & after numerous phone call appointments with the team there, I elected for surgery. My AN was 22mm & I didn’t want to watch & wait, I wanted it debulked. I was lucky with surgery and had the 12 hour operation on April 23rd when 95% of it was removed. I don’t regret having surgery at all but I do have post surgery issues that I didn’t have before. I was losing my hearing & my balance was starting to be affected before surgery. Post surgery, I am now totally deaf in my right ear, my balance is about back to the same as it was pre-op, & the main side effect is that when I chew food my eye & nose run quite a lot, but this is only when I eat. I recently had a follow up MRI which I will get the results from once the MDT have discussed it at the end of this month. Kings were amazing in the run up to the operation and during my 8 day stay, I could not have asked for better care. However, once discharged I have had no follow up consultations for 4 months, had to sort out my own vestibular physio (an absolute must) and have been left to recover under my own steam. In my experience if you opt for the operation don’t underestimate the severity of it, the aftermath, & recovery expectations. Make sure you have physio in place before you leave hospital, and do all the exercises given to you. If you are worried about something, e mail the skull base nurses & someone will usually call you back. I am now 20 weeks post surgery, I walk 3 miles a day most days, I was driving after 6 or 7 weeks and have started a bee part time job! It isn’t the end of the world, be kind to yourself, listen to your body & if in doubt, contact the team & don’t let up until you get a response.. good luck with it all, take care, B xx

[Fairy-Princess in reply to Gardener21]

Thank you so much for your input. I’m so glad you are getting back on track and feeling positive. I haven’t had any contact from anyone. My GP gave me this diagnosis 9 days ago. It was a complete shock for both myself and my doctor. I’m still trying to process things but from advice on here, once I know what’s going to happen it will get a bit easier to deal with. Pleased the treatment with Kings was good and thanks for the advice regarding physio. Please keep in touch as it’s very reassuring and helpful. xx

[Gardener21]

It will be ok, and you will work through it.. I was absolutely shell shocked to get the diagnosis as I’ve never been in hospital (apart from having my daughter) in my life! It stunned my entire little family & group of friends.. I had little input from my doctor, apparently they are so rare that many GP’s only have one of two cases in their entire practice lifetime, but when I did speak to him he was very encouraging in telling me I was doing the right thing in having the op. The surgeons said it was just starting to press on my brain stem so I’m glad, in my case, I had surgery. Once I had contact from Kings which was within about 6 weeks from being referred to them, I felt a lot calmer and decisive. You may be able to have gamma knife, unfortunately mine was in an awkward position for this and was too big as apparently the tumour swells before it recedes after gamma knife, so symptoms increase. Kings will advise you on the options once the multidisciplinary team (MDT) look at your case. This is the specialist nurses, the neurosurgeon and the ENT surgeon. Once I decided on surgery I followed up every phone call with an email, keep your name under their noses! I’m not 100%, I still have tinnitus but it’s manageable, I’m still unsteady but again it’s manageable and is only really bad if I’m tired. I’m just glad the ‘thing’ is debulked and not growing.. and don’t forget, a plus point is that acoustic neuroma date usually benign.. think positive! Take care, B xx