Hi All.
I'm a 47 year old male.
I was diagnosed with a AN last Friday.
I have the poor hearing and tinnitus in my left ear, balance is OK but im not as steady on my feet as I used to be.
However I also suffer from a really stiff neck and shoulders and wondered if any one else has this and if this is also a symptom of the AN, or I just need a new pillow.
Thanks all.
Welcome sorry have no experience of this myself. All the best x
Hello shouie
I had a right side acoustic neuroma diagnosed in 2014, but have never heard of stiff neck and shoulders being a symptom of AN. However, worry and tension may well be the cause - this is a difficult time for you trying to adjust to having a brain tumour and thinking about what's going to happen next.
If you are in the UK you should have been given the contact details for a specialist nurse - why not ring or email them and ask? Or book an appointment with your GP - mine could not answer all my questions right away, but found out as much as she could so she could support me, which was a great help when I was first diagnosed.
Invest in a new pillow anyway, might as well be comfortable!
Stay safe,
Tabby
Thanks Tabbycat, any additional information and advice are greatly welcomed at this time.
Shouie
Hi there I’ve had a similar thing - mines on the left too. Think the body just holds it tensely Muscles in alert? so gets like that? Not sure if that’s the stress reflecting or actually a side effect.
Massages, light mobility exercises For neck, shoulders & back helps. As well as sinking In including your neck & shoulders Into a bath with lots of salts. Possibly massage the shoulder With warm oil just before. All the best.
(Apologies my ph puts in cap letters from time to time)
Try a massage it could stress.
My brother's consultant mentioned that one of the nerves that can be affected by an AN has to do with shoulder movement. Not a symptom for him at the moment, but guess yours could be?
Hi, welcome. Could it be stiffness if you keep yourself straight in case of wobbling? X
Hi, i suffer from a weakened left shoulder and arm. My leg sometimes goes jelly like. I have no idea if its related to my AN which is on the same side. I don't really get stressed so I don't think its that. I have an orthopedic pillow I invested in a couple of years ago which I love.
Perhaps I will try a chiropracticor to see if there is anything apparent. Its easy to let our minds go into overdrive but at the same time little is known of this condition it seems.
My consultant basically said not start imagining things. He was a bit too abrupt having no background of how I actually play things down generally.
Hopefully your consultant is more sympathetic but maybe try a chiropractor too. Hope you get on well.
Hi shouie I was having the same problem ,worse on waking up .But Have reduced from two pillows to one and it has made a difference for me ,Hopefully it will last .
Hi
I have had a sore shoulder and neck for 7 years following the removal of my AN. They cut the acoustic nerve on that side, so I guess it has a knock-on effect. All the above advice works, if that helps.
Hi. I was also diagnosed recently and am having dreadful trouble with very sore neck and shoulders. I'm sure this is also causing headaches. Only relief I've had is seeing a physio who has given my neck some gentle traction, massaged the shoulder area and used acupuncture on my head and neck area. And given me some really helpful exercises to do. Let need know how you get on getting a new pillow but I would get some help with it. I think it's maybe caused by tension?
PS. It's all a bit shocking isn't it? I was diagnosed a couple of weeks ago and had the same thoughts about trying to work out what could be the AN and what is just other stuff that happens generally. I'm thinking that maybe having other people with AN to check things out with is helpful, especially if you're not someone used to asking for help or advice from others in real life!
Good luck with all. Do you know the size of the AN and likely treatment plan yet? Lin
Hi Flappers.
Actually I had a massage which really helped with my stiff neck and shoulders so I've booked in for monthly massages going forward but also gentle daily exercise like head rolls and stretching seem to help.
Also ive found listening to meditation music or really just any relaxing sounds at night really helps me distract from the tinittious. I guess I'm taking my focus away from the tinittious.
I've not had an exact size of my tumour but from the original MRI I was told it was about 1.5cm.
Just last week I had a 2nd MRI with contrast and have a face to face appointment this Friday (Friday 13th.....Good job I'm not superstitious).
So I'm hoping I'll have a better picture to whats happening and hopefully will be advised about the best plan of action.
I'll of course update you after I know more myself 👍🏼
Stay strong and positive brother! you are not alone and together we will all get through this.
Shouie
Hi Shouie. I'm more of a sister than a brother 😘! But we will get through this indeed. I also have two appointments on Friday 13th... So absolutely let me know how yours goes..
I'm doing the neck/shoulder physio exercises and also massage, but had acupuncture ( the physio also does that) on my head and neck... Brilliant for getting rid of headaches.
Really hope your appointment is helpful and give you a clear plan. In the meantime, stay safe and sane!!
Oh, I'm sorry!
Not sure why I assumed that you are male??
You have 2 x appointments, I'm guessing these are AN related? What are they if you don't mind me asking ?
Anyway stay well and I'll message you sometime after the 13th.
Shouie
It was a lovely ' stay well and positive brother' comment! Maybe the photo of husband confused! All AN related...My two apts are at the ENT first, hearing tests in the morning, then in the afternoon a zoom apt with the tinnitus therapy team, then a random ENT telephone apt on Sunday 15th at 5.30pm... not sure what that is for! Those wonderful NHS colleagues working so hard and overtime. I am guessing your apt is with the consultant? I had mine last week. Putting me on watch and wait for 5 months.
Hi Shouie, I'm so relieved to read your little post as I have a small acoustic neuroma but great issues with my shoulders and neck. The pain from the neck creates nasty headaches too. I'm absolutely certain this has everything to do with the neuroma. And there doesn't seem to be much I can do about it other than stretches and physio therapy. Take care
I think when we are a bit wobbly we tend to stiffen our head to help with this therefore causing neck problems
Hi ,I was experiencing the same thing ,stiff neck and lots of headaches.Mentioned it to my physio who suggested just using one pillow which I did and has been much better.Also invested in a side sleeper pillow .
Side effects of gamma knife, and how does it feel having the frame fitted ? 
Hi AN second MRI with contrast
A kind of waving feeling in my right head,and tinnitus in my right ear..Why do some AN grow quickly over a short period of time, could stress or hormones play a part? 
Acoustic neuroma advice if possible
