Fed up?

[DellyAves]

Is there anyone out there who is fed up with watch and wait? I’m considered to have a small tumour but have symptoms, such as hearing loss and persistent vertigo. I’m on annual review at the moment and I’m just getting really fed up with a few things - mainly the symptoms. I appreciate that I am considered lucky in this situation but just wondered if there was anything I can do? Or treatment to ask for to make the symptoms more manageable.

Thanks for listening.

[Ga131078]

Hi there, I have many side effects from AN plus the Op and Radiotherapy and had them for 12years plus now they still get me down at times, my side effects are Facial Numbness on the right side, Deaf in the Right ear, Tinnitus constantly, had a gold plate put in my right eye lid so I can close my right eye properly, muscle weakness, Vertigo, Speech Problems, Dizzy Spells, Forgetting things Brain Fog, Balance Issues plus your Mental Health and Wellbeing takes a big hit as well Fatigue and Tiredness are my Big One's constantly Dead on my Feet, look what am trying to say is there really is not much in the way of treatment out there for something's, me last week was offered Physiotherapy 14years after when I really needed it told them to give it to someone else fat lot of good it will help now, well I learnt to live with all mine and try out of the box things to help me like if my Tinnitus really kicks off when am trying to sleep b4 work I put some white noise on or TV on in the background and focus on that it helps but it took sometime to do it, try googling things and see if anything of there helps, I've not found anything for Vertigo or Dizzy Spells to help me, but you'll get used to it and manage them the best way for you, that's all I've done just lived with them sorry can't be of any real use just remember your not the only one and Chin Up Keep Smiling and Laugh its been my best cure even when am Lost.

Stay Safe Peace and Love ✌🏻❤️

[flappers]

Hi! I totally understand your frustration. I call it wait and worry! I remember feeling exactly the same way. However, there are a few things that I finally got my head around. Firstly, direct treatment for smaller AN does not improve the things you are experiencing. What does help is vestibular physio and walking for balance, hearing aid with tinnitus masker, really focusing on what soothes and calms you generally and time. Our brains and bodies do adapt in time to living alongside our squatters and the ‘do no harm’ approach is the best one. I hated being on w and w but in time understood why it was a better option. That said, mine did double in size to 25mm and I was given choice between surgery and radiotherapy. In a way I felt relieved that action would be taken, but the things you decide don’t necessarily go away with treatment . What did happen was I found ways to manage and it no longer consumes me. Ask for vestibular physio and keep talking to the skull based nurse or team re the impact of the vertigo and if there is anything they can suggest to help. Hope it improved for you 💐

[raglansleeve]

I am waiting to find out if I have an AN, and recently started having vertigo. I had a very violent episode on September 28th, which sent me flying to the toilet to throw up and by the second spew, had to use a kitchen bowl while sitting on the bathroom floor. By the time I heaved yet again, I was flat on the floor and had to just let the vomit fly all around me. The room was spinning so much that to even speak, or open an eye, caused horrendous distress. Yesterday, I had another episode, but was able to remain standing above the toilet and only vomited 6 times (unlike the 30 - 40 times during the first episode. The second episode only lasted for 3 1/2 hours, vs. the 6 hour bout I'd had first. Is your vertigo that extreme? Or did it start out that way and improve over time? I've read that it can get better the longer you have it, but of course, never go away. Also, I've been reading that there are some medications that can stop the spinning and vomiting, have you tried any of those? I'm sorry that you're in a wait and watch mode, and hope that you can work things out with your doctors to get into surgery, if that's what you want.

[FERNBROOK]

Hi It's easy to feel in limbo on watch and wait but believe me intervention be it surgery or radiotherapy is not always a definitive answer. Symptoms do not suddenly improve and it can be a long haul adjusting ( in my case post surgery). I was in a hurry to just be rid of this thing so had made up my mind to have an immediate visual result with surgery. In the end surgery was the only option as the tumour grew rapidly and became cystic. I was unlucky and had complications but 2 years on only now am I properly functioning. Surgery is not always a golden bullet that takes you to a different level of recovery. It's been a struggle to be honest. Others may sail through the process but many still have symptoms such as balance issues, SSD, tinnitus and all the other great stuff that goes with it. I had visiting extensive physio that helped enormously..you may find it eases your own symptoms and can be found on line quite easily. Watch and Wait is best seen as another form of treatment rather than doing nothing. Good luck.