KM@home

[Vinnymk1]

I have an AN on watch and wait plan and have most typical symptoms plus some symptoms which I feel are connected to the tumour. I have a constant moderate to really awful mastoid pain on the side of tumour that then extends to back of neck pains and then into my shoulder.

I am on medication to reduce the pain but this often wears off during the day (had the dose doubled in last few weeks with no change) or on some days I get no relief from pain levels. I have had: a warm neck buff, heat pads, deep heat, massage, wear a hat on most days inside and outdoors and on cold days when I'm out I feel the cold in my head so badly that I have to wear a buff, then a wooden hat and a fleece hoodie over then a coat hood over the top just to feel comfortable.

Anyone else have similar or have any suggestions or advice?

[flappers]

Hi Vinny, it can be hideous can’t it? And so tiring. I have found that daily amitriptyline helps me, with the hot pack and pain killers when it’s been really bad… and on top of all the things you’ve tried, I also have had acupuncture ( on the nhs) via a physio referral, which I had for the neck and shoulder pain ( which I think is caused by tensing up from the neuropathic pain!) Mine is totally manageable most the time, more intermittent, but I also try to attend the regular hypnotherapy sessions the Brainstrust offers, which is a lovely way to relax and have a reset and I think distracts me. I hope yours settles in time. I know it seems unlikely for you right now but I think we adapt and it becomes less intrusive. Hope that happens for you soon💐 I went to Thailand last year for some rest and recuperation after radiotherapy and it was barely noticeable. Warmth, relaxation, rest and cocktails definitely was the best prescription!!

[Vinnymk1 in reply to flappers]

Can I ask at what point did you have treatment offered?

I was diagnosed December 2022 and am on scan / watch and wait at the moment with (what I guess is) mild symptoms compared to some. I am on Amitriptyline for head pains but I really struggle with the fatigue, as I was up until August 2022 quite active, when I assume something grew or moved to trigger constant tiredness and constant ear, neck and shoulder pain with horrendous tinnitus. I have been told the option of treatment of removal or radiotherapy, due to where it is, will most likely cause more issues than it will solve! I currently work full time Mon - Fri and somedays, usually Thurs / Fri I collapse in a heap at end of day and sleep heavily for 4 hours after work then eat and then go sleep heavily all night. And Sat / Sun is mostly sleeping.

[flappers in reply to Vinnymk1]

Hi, of course you may ask!

Diagnosed Sept 2020, 12mm AN, due to a sudden onset of persistent screaming tinnitus in one ear. Watch and wait, second scan at 6 month mark, and during that time started to have all sorts of other symptoms, like balance a bit affected, tiredness, pain in the mastoid area and hearing loss, twitchy face and a numb side of the head. I felt it must have grown but in fact the follow up scan showed only 1mm growth. Over the following year I got used to the tinnitus so it bothered me less, the hearing aid helped with a tinnitus masker, and generally I felt better and less tired, although I wasn't working full time, and basically decided to take my work pension at 55 and work as a consultant very part time, I knocked off things that caused me any stress and spent a lot more time nurturing myself! I also believe that the tinnitus and hearing loss and pain is absolutely exhausting, but in time we adapt and notice it less, and therefore the fatigue this causes does lesson. But overloading your brain and working full time, it is hard to nurture yourself enough to counter the effects of it all. Anyway, I then had a scan in the Feb of 2022, expecting it to have stayed same size, and the tumour had nearly doubled in size, I was very surprised, as it had seemed a slow grower before that. I was given option of radio or surgery, and by this point accepted that neither would make the tinnitus go away, and invasive surgery could bring a whole lot more difficulties, however it did need something doing, as was 25mm and starting to point into the brain stem. I chose radiotherapy, which I had to have over 5 days in three sessions, at Guys, in June 2022. I am currently waiting for the first follow up scan results (they leave it 18 months under Kings/Guys as they say it shows swelling before it settles to see if it has helped stop growth.) The whole journey has got easier, as i have adapted to the gift of having an AN, and I promise you that will happen for you too, as impossible as that seems right now. I actually don't think about it every day now, and I remember that first year or so it was so difficult. It is mindblowing to accept that sometimes doing noting is the best option, as 40% don't grow more after discovery, and there is no easy fix, but that said, if you do need treatment it is available and better than ever was, I am sure. I think I managed really well with treatment and it was nowhere as bad as I thought it might be (I was scared about the impact of swelling, as it was so close already to the brain stem) but it was fine, a bit of a wobble around the 4 and 7 month mark, but steroids are on hand if needed to calm that down.

Are you a member of the Brainstrust AN group? Really helpful, and they offer one to one support, hypnotherapy, and peer mentors too. I think the biggest thing is to know you will adapt, this thing will NOT kill you, and you are not alone, there are a few of out here living our very best lives. I am about to go off to Thailand for a month, have been dancing at festivals this year, and really can live with this. I didn't feel that way a year or so ago. What team/hospital are you under?

[Vinnymk1]

Hi, Thanks for your input..

I am with Skull Base Team at Salford Royal who have been great. I will investigate Braintrust AN group, thank you.

Glad to hear you're seeing positiveness.

I am struggling the most with the level of helplessness and constant tiredness - high level fatigue. Not used being so idle frustrating that I can't get on and do the house and garden jobs that I would normally do.

Thanks..