Balance issues, eye problems 3 years post-op

[wwoodward49]

It will be three years in June since I had my surgery to remove my AN. For two years I had really bad headaches every morning which would last for hours. The headaches have lessened but now I am experiencing more balance and dizziness issues. I still have tinnitus which is never-ending and I find it hard to do much of anything as I always feel like my head is in a fog and my balance is always off.

I have terrible depression because of not being able to do things other normal people do. I am 73 years old and was in really good shape and still working until I was diagnosed with the tumor back in 2018. I was wondering if anybody else is experiencing similar problems after surgery and if so how they are dealing with it.

[Choppy12]

Hello there,I am v. sorry to hear all the difficulties you have and are experiencing. I experience the same excluding the headaches.

I had my AN removed in 1989 when I was just 25. The surgery was life-saving as v. large. I have struggled with extreme tinnitus, balance issues, an undefined or general feeling of dizziness which has slowed my thinking and movements to some degree plus residual one sided facial paralysis but not that bad.

All the above has at times taken me to dark places maybe because diagnosis and surgery took place when I was young/starting my career. These days whilst I still struggle with the same I am older and see that my results are the compromise I had to make to live and feel that I am lucky in that sense.

You are still new to your results and probably feel cheated of your previous life. A change of mindset is what is needed - you can get there! x 🤗👍❤️

[wwoodward49 in reply to Choppy12]

Thanks for the kind words. It always helps a little knowing there are others who are going through the same thing.

[Jig54]

Hi I had mine and a cyst removed nearly five years ago. I still have headaches on and off which can last over a week. I currently have one which has lasted eight days. My balance is still off and when I walk it feels like the pavement is coming up at me and I veer to the right. I cannot walk down stairs and steps without holding on or walkover bumpy terrain. I attended Tai Chi for a few years and that did help but it’s recently stopped due to cut backs. I just tried over 50’s keep fit for two weeks but I was so dizzy and disoriented afterwards for the whole day. I also have issues with my eye and am completely deaf in one ear which doesn’t help my balance. I have Botox as my right side of my face doesn’t really move and I can’t eat on my right side and it does help. I saw my consultant last week and he said the headaches are probably due to scar tissue but they are excruciating at times! He asked me to remember what it was like taking exams and the concentration it took and explained that that is how I am every day but not realising the effort it takes to lead my life! He also advised me to stay away from aerobic exercise and try yoga which would help stretch my neck muscles out which are very tight and I have limited movement. Deep tissue massage does help with that. I also was a fit and healthy 63 year old but now have to manage my activities and time and just rest as and when I need to. I can completely understand your frustration when you want to do something but can’t! I’ve had to learn to live with my frustration etc. Look after yourself and take care.

[wwoodward49 in reply to Jig54]

Thank you so much, but sorry to hear of your symptoms too.

[Pinkrose1]

Thank you so much for your post, it has encouraged me to know i am not alone. I was literally just discussing this with another family member and saying how frustrating it is to still have symptoms, off balance with nausea, brain fog, exhaustion and eye problem after surgery year and half ago. I have accepted things myself but often feel others expect me to have recovered and be over it by now. I have to keep reminding myself that it was a big surgery and not to put pressure on myself with what I can't do anymore, to be kinder to myself and pace myself to help manage the exhaustion. Hope things become better for you

[wwoodward49 in reply to Pinkrose1]

Yes, I think that is a problem. People can't see what my head feels like and I think they sometimes feel that I am making it up.

[LemonChili]

Hello, so sorry you are suffering. It is a shock and hard to adjust in my experience, but understanding and dealing with all this will empower you, help you get back to your true self.

First l have all your symptoms. I have double vision as a result of the ANs after cyber knife treatment in 2010, tinnitus permanently in my left ear, headaches, wobbly but Pilates helps that.

I have prisms added to my glasses’ prescription (to settle double vision and my dizzy/wobbliness ) and that helps a lot. See a good optometrist or ask your hospital to refer you. I was told that double vision was caused by the ANs.

l hope this helps.

[wwoodward49 in reply to LemonChili]

Thank you for your kind reply.

[musicman5]

I also have many of the same symptoms including balance issues. I'm 68 and my surgery was 28 months ago. Luckily, I had been retired previous to the surgery. I also have fine-motor issues and ataxia on my left side making it difficult to play guitar which is definitely frustrating. I'm also only driving locally as I have some residual facial paralysis and my left eye gets easily fatigued. I still was about 2 miles/day using a cane or hiking poles and m able to travel though I always use disability support at the train station and airport.

[wwoodward49 in reply to musicman5]

Hi musicman5, I also play guitar and have played for many years. When I was younger I played in several different bands. Being in a room now with a lot of people talking makes my head very tired and confused.

[musicman5]

I can see how that would happen. I have trouble understanding conversations in busy rooms with my SSD. I also tell people that I have to concentrate 5 times as much to play one-fifth as well as I did before.

Here's a link to my YouTube channel- you may enjoy the song We Never Know which I wrote just prior to my surgery: youtube.com/@chuckmessinger...

[wwoodward49 in reply to musicman5]

Thanks for the link musicman5!

[Ballantyne56]

hi Woodward,

I am the same my tumour has grown and like you I feel my tinnitus is awful my balance comes and goes it is really makes my life difficult.

It’s not easy