Having been diagnosed with a small AN 3 years ago (11mm) I was put on watch and wait after the first year it had grown to 12 mm second mri in feb this year was told by letter no significant growth. However over the past few months I am finding I can go slightly dizzy with my whole body feeling tingly and feel like I m struggling to keep awake !! Have nearly collapsed a few times !!Can happen whilst working or sat relaxing, have spoken to my GP, had bloods done heart rate blood pressure all comes back ok, question is has any one else suffered with this????
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Lilbob
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Hmm. I do get dizzy and I know tiredness is often related to the tumour. Have you rang the team who are managing your tumour? May be worth bringing your scan forward just to check all OK? could be completely unrelated though. It’s so hard to know isn’t it.
Hi, thank you for your reply, my GP said she would would be getting in touch with my consultant to try to get my next scan brought forward, after my last mri they were going to make it 2 yearly for some reason so hopefully they will get me back in sooner. I’m now waiting to hear from GP and consultant! Like you said it may not be related, time will tell. Hopefully get sorted soon.
I think if the growth rate settles over time they tend to move the scans further apart so I would see that as a good thing that they are suggesting that. Sounds like you have a helpful GP to chase them up. These sorts of symptoms can happen sometimes if you’re just a bit run down but I think because we know we have a tumour it’s natural to wonder if it’s linked at first. Sounds like it’s prudent to get it checked but most likely your body doing some weird things, just as bodies sometimes do and will be back to normal in no time. Take care xx
I am in ny and they like wait and watch approach. MyAn sits right on hearing nerve. They told me I might have some relief but the surgery is very risky. I think T comes from the brain almost like the nerves got excited but some people do have relief after surgery, also was told TMS could help but I don’t know how since it’s kind of bangs in the head,
Yes that's correct tinnitus will not go away, there was some relief but I think its more of getting used to it, give it some thought and it's back again
In the gentlest, loving way: try to chill on this. the "I want mine out" is only going to cause more stress - which you don't need. I am a dual US-UK citizen and have consultants in London and NY (a grateful fluke).
2mm is barely on the radar and no consultant will touch it. In fact, if they did I'd be very suspicious. Some of these either stop growing, or in very lucky cases, shrink on their own. All treatments come with permanent side effects.
The window I learned from my journey is between 10mm and up. That's when it starts to be a problem warranting attention. If it grows 1mm a year, you have 8 years to go. You are very lucky they caught it this early - most poor things on here only discover after they are 15mm+ and then the treatment options lessen.
If you are that worried, go private, get a second opinion, and get on track for Cyberknife or Gamma Knife radiotherapy, when the time is right. The good folks at NYU Langolme - the director there is also one of the leading phycisists in the USA (akin to his counterpart in London at HCA + NHS Cancer Centre Guys / St Thomas) nyulangone.org/locations/ny...
Facts: the tinnitus will come and go. Cyberknife or Gamma knife is less invasive. Full surgery is a last option - but all come with variable outcomes and symptoms.
There is a new treatment trialling in Germany that promises invasive removal, preserves hearing and does not damage anything - but you'll have to investigate. A consultant told me it looks good, but as it's in early stages, it's crazy expensive.
Thank you so much this was very helpful. My worry is in that ear the tinnitus is extremely loud and hard to ignore it’s like an all say loud whooshing sound. I cannot win for losing because crazy stuff like the apple iPhone speaker on phone calls keeps going off in my ear. The mri was incredibly loud etc so I feel like I keep doing things to damage it more. I do try to ignore it but it’s hard I cannot lie!
I hear you. I've had increasing tinnitus for several years. Comes with the territory. It's slightly bizzarre that a tumour so small is causing so much at this stage - must be the position or something.
I've had to alter my listening devices. I spent a lot fot Bose top line headphones, and for day to day, Bose corded earbuds. Both are more comfortable, and provide apps where you can adjust volumes. I've also invested in a pair of reputable noise canceling ear biuds for noisy situations - BUT - doing this also makes the tinnitus more noticeable. I keep earplugs on hand as well - but again, you can hear the tinnitus more.
I also keep binaural beats music, or Spotify has a lot of ambient lounge and 'salon' kind of music. I find if I keep it on low, my attention does not go to the tinnitus.
I'm new here and to VS/AN. Excellent and compassionate post. The German surgical development looks fantastic IF one is eligible in terms of tumor location. I found a YouTube link which may be of encouragement for some. youtube.com/watch?v=dAYLaki...
Yes, My symptoms are similar, mine was 15mm grown to 18 mm in. 1 year, tiredness, fatigue, headaches. I have an appointment 2/12/21 to discuss a plan. Fatigue is the big problem. Good luck.
Hi. I’m on w and w for a 17mm and up to recently only had screaming tinnitus and hearing loss and slight numbness and some twitching to face…. But having recently had covid, I have EXACTLY the symptoms you describe, very dizzy, light headed even resting, tingly fingers, and SO tired. I wondered if it was connected with the AN but feels like it’s post viral….I am going to ask my GP if it continues much longer for a check to see if I am vitamin B12 deficient, may be worth asking the same. ( even if you take it, our bodies may not absorb it). Obviously good to bring the scan forward too maybe, to put your mind at rest?
Hi, I’ve been lucky so far not to have had COVID so I can’t associate it with that, but initially had put it down to either blood pressure or heart issues (I don’t have issues with either) had blood tests ecg etc all’s good so just thought I would ask here, now I think I’d best try consultant rather than GP. Thanks for your advice, I hope they sort you out soon.
Hi , I can say as side affect I am facing tiredness, fatigue and headaches.I am not getting so dizzy as you mentioned but it seems differrent people are facing different affects . as others mentioned , best way will be to get in touch with your consultant - maybe directly - to inform and consultant will guide you about action plan -like changing next scan time -. I faced that from GP to consultant communication is taking time and my consultant mentioned to inform him . -Also , my consultant informed me : if any change or additional side affects in my condition , I should inform him to be sure - . I hope all will get better for you .
Hi, yes I possibly should by pass the GP, I’ll get in touch with my consultant direct. I suppose I was hoping it had nothing to do with my AN. I’ve been blown away by the response from everybody here and all the support everyone gives!
Hi Lilbob,I recently had AN tumour removed, for years I had all the symptoms you described. I went to the docs before they knew it was AN and they did tests but like you found nothing wrong. Over the last few years I started getting worse and thought it was low blood pressure as I kept nearly passing out when I stood up and would lose my vision multiple times through the week which increased to many times in the day over the last year. It made me exhausted. I had tingling in my fingers and toes and down my legs. I had the op a month ago and am still recovering but haven't yet had those symptoms since. I'm hoping they were down to the tumour and won't have them again but can't say for sure until I am up and more active. Hope things go well for you
Please tell me what surgery you had and if you still have hearing etc? Was the surgery recovery rough and where did you get it done? I want my an out. I have to believe it has something to do with my T because it is screaming in that ear. I notice that I cannot take loud noises and have been trapped in exercise class a few times that was ear splittingly loud. I’m more concerned now about hearing bring damaged.
Hi kellyc, I live in U.K. I had acoustic neuroma surgery and I was told that I would have complete hearing loss due to op but I was more or less totally deaf in that ear anyway due to tumour ( so it hasn't made much difference to lose it completely ) ... It's good to have the tumour out as it was impacting my life on a daily basis. For me the tinnitus has actually improved since the op, it has actually helped reduce it and I barely notice it at all now.
They told you you would lose your hearing? I still hear very well in that ear so scares me. Where did you have surgery and which type was it? Was it major surgery and recovery? Thanks
Hi Pinkrose, thanks for your reply. Am glad to hear your on the mend now, it must have felt quite daunting in the run up to your tumor removed. What size was it when they decided to operate?
A year ago it was 27 mm but couldn't have the surgery due to Covid situation and then diagnosed with bowel cancer which I had to have an operation for but when I went for another MRI just before the the AN op the surgeon said it had grown but I'm not sure how much.
The dizzyness is a kind of Vertigo - these things are right next to the balance nerve, unfortunately. I use Aviomine travel sickness tablets to help, but they , too can cause drowsiness. Talk to your consultant about anthistamines and if they'd work for you... There's also MQ motion sickenss patches that are herbal - and I use those as well.
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