Loss of Balance

[rogthepoge]

I was diagnosed with AN 5 years ago and it has remained under watch and stable at 18mm. However, I am increasingly having balance problems. Turning over in bed and my head becomes totally disorientated for a few seconds, and when getting up need to sit on edge of bed for a couple of minutes until head readjusts or else I totally lose balance and collapse on bed/floor. Same thing getting up from armchair or when bending over. I have learned to live with this but am not sure if I should be concerned or is this fairly normal. I would welcome the views of other sufferers. Thankyou.

Roger

[Karbob]

I think you should get hold of your specialist team and have a review. They would then advise you on how to deal with it.

[Ballantyne56]

Roger I would contact your consultant, both my friend and me have a AN she was getting the same symptoms as yourself, she is having to get one radiation treatment in Edinburgh she lives in Glasgow. She has been and had them make the mask, her treatment is in October.

[rogthepoge in reply to Ballantyne56]

Thankyou for your response. I will consider what you say when next I have contact with the Consultant. However, at age 74 I am not in any rush to get involved with hospitals and uncertain outcomes, but it's good to know that there could be options down the line.

Thanks Again,

Roger

[Ballantyne56 in reply to rogthepoge]

Roger my friend will be 74 this year she has been told she will only need 1 treatment. I am very surprised that she is going for it but her balance is not good. I will let you know how she gets on if you wish.

The consultant says they are sure it will stop it growing.

[rogthepoge in reply to Ballantyne56]

I would like that.

Thankyou. Roger

[Pinkrose1]

It was how i was for quite some time but I would say to let them know about your symptoms. A few weeks before surgery it got really bad and I couldn't stand or do anything through the day as I felt like I was going to pass out all the time. Its worth them checking if it has grown and if treatment is needed.

[whiteleye]

I, too, am on "Watch and Wait" for a 12 mm AN. My dizziness/balance problems came suddenly and are now ongoing, adding to the complete loss of hearing on AN side. In spite of two times with vestibular rehab, the dizziness is much the same, but I have adjusted somewhat, trading my bike for an adult tricycle, etc. At 78 years old, I am not a candidate for surgery, which in many cases will help with the imbalance problems. The radiation treatment has the potential to make the dizziness/ imbalance worse as the tumor swells and retracts after treatment. My approach is to exercise as much as possible to keep my leg strength. I can catch myself when I seem to lose balance when walking. Someone else may have another solution for dealing with this problem. Good luck!

[rogthepoge in reply to whiteleye]

Thankyou for your response. Everything you say very much mirrors my own situation, and in a strange way it's reassuring to know that one is not alone at age 74. I am content to get by with things as they are, and unless I'm told otherwise by the medics then I am not in any hurry to go in for any hospital treatment as some outcomes appear a little uncertain (from reading other Posts). Whilst I may be willing to just soldier on I guess my main concern is could doing nothing about this balance/disorientation eventually lead to something more serious.

I think the problem arises from the fluid that runs around the brain being partially blocked from freeflow by the AN, Just my theory.......!!

Once again, thankyou for taking the trouble to respond and I wish you well.

Roger

[DesertLady2 in reply to whiteleye]

Your case sounds like mine except my neuroma is at 8cc and I am on watch and wait for shoe yes. MRIs show no growth even a slight decline. What’s problematic is loss of hearing in my left ear constant fuzzy head and the worst balance possible. Had many serious falls. Even broke my pinky on one of vastubular therapy did nothing but I do practice yoga so that has helped my strength and balance a little bit only. I just turned 80 I was diagnosed almost 3 years ago at 77 and they didn’t want to do anything at time due to my age even though they admitted that I was in fairly good physical shape. In talking with several people, it seems like the CyberKnife surgery Alex like I said, I still have a lot of living to do and this bad balance issue is really depressing me and holding me back from doing things that I did and still want to enjoy like riding a bicycle I can’t do that anymore, I don’t have the balance. Even traveling, sightseeing, and walking with bad balance it slows me down. I don’t think it’s fair. I’m willing to try the radiation regardless of the consequences whatever they might be at my age - but I’m not ready to stop living because of this tumor.

[Ballantyne56]

Hi have you had regular MRI scans ? This happened to my friend who also has a AN she has balance problems so it had grown and she has to get 1 session of radiation

[Will5168]

Hi Roger I have the same issues as you. I have had tests and through the audiologist I had a BVP test which shows that 23% of my vestibular nerve is working the rest has died off as a result of my AN. I’m having physio to try and assist my balance but it’s not coming back and will get worse. I am constantly dizzy which as knock on effects such as tiredness etc

[GrannyBlackpool]

My A N was removed over 20 years ago and although I had after effects i.e. loss of hearing on left side of head and some balance problems, I could manage quite well. however, over the past few years (since the pandemic) my balance has rapidly depleted, I have had physio which has not worked and my balance has more or less gone. I have been given a 3 wheel walker to use outside - this helps a little which means I can manage a little shopping. I have heard there are some American exercises which are supposed to help but my Physio Therapist says she has no knowledge of these exercises. I have seen advertisements on line advertising sale of these exercises but they have to be ordered and paid for from some overseas organisation. Does any AN patients have knowledge of Brain Exercises available in this Country.. I would very much appreciate any advise because I have ended up in hospital several times through losing my balance and falling.