Following a recent MRI during which my AN was shown to have increased in size, I have also noticed a change in my symptoms. Although unilateral hearing loss and tinnitus have stayed the same (at least as far as I can notice), I do notice an increased unsteadiness when walking around for some time up to the point where I start feeling nauseatic and have the feeling I need to vomit. This feeling comes and goes quite quickly: If I sit down or even stand still without moving around I feel better in short space of time. Is anyone else having this issue and is there anything that can be done to avoid this. Consultant advised last time to do go out and walk (especially because my work is mostly sedentary) so perhaps it is just the fact that I am simply not moving around enough and my body is not used to it in combination with my AN.
Thanks in advance for advice..
P.S. Last week on my way to work in the morning I had another episode of unsteadiness and nausea. I have to walk approximately 15 minutes to railway station and was struggling also because of sinuses in overdrive (possibly in combination with low temperatures). Due to this I was coughing up some phlegm and was no longer able to hold it. Hence I had to find quiet corner facing away from public and release some phlegm from back of my mouth. I was worried I would have a instantaneous vomit attack if I were to swallow but fortunately that did not happen. When I was ready to continue my journey (I was only minutes away from train station), I was approached by two community support officers who handed me a Fixed Penalty Notice. I tried to explain them that I had a medical condition and was not well but to no avail. All very embarrassing since I was stopped in quite busy area and I was wondering whether they had picked up on me being unsteady and thought I had one too many to drink. I no longer drink alcohol certainly not at 7:30 am on my way into work. Feeling of unsteadiness and nausea quickly disappeared after getting on train and no longer walking around. I always thought that it was only me thinking that I am unsteady when walking (it feels as if my legs are only loosely connected to my upper body). I do have to concentrate a lot when walking in crowded areas since I am worried I could walk into somebody.
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roland0302
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Hi Roland, yes i have had that a lot, giddiness and unsteadiness on my feet that makes me feel very sick. It unfortunately is part of the symptoms of AN . It made me feel insecure about being in public as I often thought i was going to vomit, I started to carry a small plastic bag folded up in my bag or pocket and that helped me cope better with my symptoms as I knew I always had something available if it should happen. Sorry to hear you are having these symptoms too
Thanks for confirming. At least good to know I am not alone with my symptoms here. I will take your advice and have a small plastic bag in my pocket next time just in case.
Also since my consultant put me on Amitriptyline for head nerve pain i found it had another positive effect in lessening the giddiness and therefore reducing the nausea, it's still there but not as much. Maybe it's worth enquiring about any medication that could be prescribed
Yes will certainly mention the amitriptyline when I see consultant next time. I had episodes of long term (months) mild very localised headache. Headache is currently not there but if it returns I will certainly mention it and monitor the impact on the dizziness while walking.
P.S. Ealing and Broadway Council were very quick to cancel the FPN after I had sent them an email. My main gripe would be that those officers have a duty of care to the general public as well. Instead of asking about my wellbeing and whether I needed assistance (was asked independently by two members of the public) the only thing that they were interested in was issuing the Fixed Penalty Notice.
That's awful ! I was diagnosed in 2017 with an AN and I too have just developed unsteadiness . When I went to the GP she sent me straight into hospital because they thought I could have a bleed on my brain . I told them about my AN and I take blood thinners but they wouldn't lsten they totally dismissed my AN as it is rare I don't think they knew much about them . As I knew no bleed on the brain and no stroke etc. . There isnt much they can do about this dizziness and unsteadiness we've just got to put up with it I'm afraafraid to say . Best of luck whatever you do
As per my consultant the body should be able to adjust and eyes and limbs should be taking over the balancing function (which does explain why feeling of unsteadiness is worse in the hours of darkness). I am trying to see what works best for me. Consultant said that I needed to go out and walk to allow body to adjust. Will let you know if there is something that works for me (perhaps it could work for others too).
Hi - I would really keep a close eye if your symptons worsen. I had similar to this and steadily things got worse over a couple of months - terrible headaches, head spinning, facial twitching all the time, handwriting worsened and getting to a point where I could hardly walk without losing balance and falling over. The AN had grown in a position where it was pressing against my brainstem so had to take a big dose of steroids to combat this until I had the op (and had to take for a few months after to wean myself off them). Sorry I don’t mean to worry you but really keep a close watch on things - good luck.
Hi Ruscomber, Thanks for advice. I will closely monitor this particular symptom. It has been very gradually progressing since early 2021 (when my AN was diagnosed). Symptoms that you are describing do not sound nice and not something I look forward to. Awaiting my follow up appointment with consultant to find out what he and his team think is the best course of action.
Thanks again
P.S. Also wondering whether symptoms improved after you had your operation. And if so how long it took you to get back to normal after operation.
My tumour was nearly 4.5 cm and in an awkward place - first op took 15 hours for the tumour removal and, unfortunately due to a CSF leak I had another 6 hour surgery, 10 days later to plug this. For 3 months after the ops I could barely function and was made worse by having bad double vision. But then suddenly thing improved markedly, my eyesight, strength and balance improved a lot, and I started work again 6 months after the ops - but it is completely home based. Now it’s been 15 months since the ops and I would say I am at 80-90% which the consultant has said is pretty good - still get slight head spinning episodes and tinnitus is still terrible. I found, and still find to an extent, busy loud environments with a noises coming from several places (such as pubs or big family gatherings) quite uncomfortable, but considering the extent of the tumour and the surgery required I think I have been really fortunate. - no facial palsy or any other major side effects.
I'm reading all these accounts, why oh why do they let them get so large! I have only just been diagnosed and my AN which is only 14mm but the head aches, neck aches, tinnitus is manageable but last week it seemed to go up a notch and it was like it was suddenly increased, someone turned the switch. I have just been told to live my life normally and carry on! I'm worried if my balance goes, will they take my driving license away, as I'm a Sales Director of a business I part own!
I think there may be a few reasons why they let them get so large:
1. Diagnosis can take quite some time: Lot of time passes between patients experiencing symptoms, going to GP, getting referral (to ENT first), then being again referred for MRI to ultimate diagnosis.
2. If the AN is relatively small and only causing minor symptoms one is placed on watch and wait. Some of these tumours do not grow at all and could have been there for years. They only do something about them when there is growth and causing issues. By that time the tumour may have increased significantly in size.
I have not noticed any significant symptoms whilst driving as long as I am still with respect to the car that I am in. So driving at speed over a speed bump would very temporarily cause me issues (this only happened a few times when I did not see the speedbump on time to slow down). However otherwise no issues there.
Thank you Roland0302, this is greatly appreciated. All I have is Tinnitus, I'm still doing 4 spin classes a week though I do get tied, but that is most probably due to my age! I hope it just stay stable, what are the figures relating to tumours staying stable??, does anyone know??
I'm sorry you went through this , it sounds like typical council workers. You've been through something shocking don't make excuses for other people treating you badly. Have you got someone to help you. I'm amazed by all of the people on this site getting up and going back to work. I couldn't. Roland you should ask your doctor for (sickness benefits(sorry don't know what you call it, I'm in Australia), take all the time you need. Also I'd like to say don't believe everything the surgeons tell you unless they have had AN's and know what you are going through. Be well, be kind to yourself.
Thanks for the nice words and encouragement. I think I speak on behalf of most people here that want to get on with life as normal as possible and that also includes work for some of us. I have only just turned 55 and feeling way too young to retire. I am partly working from home but would not want to miss out on those 1-2 days per week that I am heading into the office and meet colleagues face-to-face. However it do not think I would be able to do 5 days in the office so for me it works out well.
Good on ya Roland, mine was a large tumor and left me out of work. I couldn't get insurance to work so I had no option. Take it easy though, sometimes you doctor can write a letter as well to carry with you. It's good to have some form of your current health problems on you. Good luck to you mate keep you chin up.
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