I've recently been diagnosed with a relatively small (3mm) AN. Only notable symptom to date is pulsative tinnitus (mainly in the evenings), occasionally feel unsteady on my feet (suffered from Labyrinthitis a few months ago, so wonder if more a psychological issue) & audiology test shows irregularity in the affected ear although no notable hearing loss.
Doctor recommends a 'watch & wait' approach for the moment, I get the logic behind this but scared out of my wits at the prospect of a deterioration in tinnitus & inevitable loss of hearing to follow . This also goes against my natural instinct to tackle the problem head on, not coping well with concept of a tumour that will just grow over time in my head and difficult to draw a line & move on. Not helped at night as all I hear is the "whooshing" noise in my head which feels like a constant reminder.
I'm sure as the weeks progress, I'll learn to cope more easily, but find daily functioning difficult at the moment. Can't see beyond this bloody tumour. GPs prescribed mild sedatives & seeking counselling to try & get my head around this.
Is anyone else on a "watch & wait" pathway, and what mechanisms have proven best to cope & not just view this as a countdown clock?
I completely understand how you feel! I was also on a watch and wait (1.5cm) and it was apparent over the course of 2.5 years that it was sill growing (albeit slowly). My doctors wouldn’t let it grow over a certain size and made that clear to me when I started on the ‘watch and wait’. Their opinion was, that even though it was growing slowly, it was growing and therefore I would have options to remove it (I had Gamma Knife treatment).
I had humming in one ear, worse at night but I slowly got used to it, facial discomfort, balance problems and some hearing loss. It was a worrying time but the assurances from my doctors were enough to alleviate my worries. I am an anxious person generally but I basically told myself that I was in good hands. It might help to get further reassurance from your ENT doc (rather than GP). They won’t let it grow big enough to do you harm. You will possibly have balance and hearing problems but it isn’t cancer! I worried more about my symptoms before my diagnosis and was almost relieved to get an answer. I hope you can be reassured that we have all worried and we’re all here to tell the tale! Best wishes.
I was also a bit freaked out to start with but as Bob said isn't isn't cancer and have to remind myself how lucky I am. I was on watch and wait and as it grew had Gamma Knife in Feb. Hearing loss is a bit of a nuisance and tinnitus you do actually get used to. I have a few balance issues too but I think the initial shock of being told you have something in your head is worse than the symptoms. If it gives you any comfort, you are not alone, and if you need to cry, let it out. All my good wishes xx
I, too, am "watching and waiting" after my diagnosis of 10mm AN five months ago. I have total hearing loss in that ear and tinnitus. I have had to grieve the loss of hearing and am somewhat anxiously waiting to see if the tumor is growing when I have the six month MRI in September. I am wondering the rate of growth that would trigger a recommendation to "do something."
I was in shock after the diagnosis but have adjusted to it now. You are not alone and we all need recommendations on how to live with this problem. Good luck!
As it was explained to me when I was on watch and wait for five years, it’s better w&w when you have limited symptoms (your tinnitus won’t get better with surgery or gamma knife) but instead, you could develop other symptoms after surgery that you don’t have now - it’s a balancing act (pun intended) Also, yours may be really slow growing and never need surgery. Mine took 15 years to get from being so small it went undetected on an MRI in 2004 (when I was 30 years old) to 1.7x1.9cm in May 2019.
The other issue is to know when is the best time to get it out - surgery when smaller is better, usually.
I was actually grateful I went deaf and developed tinnitus 15 years before surgery - it meant I didn’t have to deal with everything all at once after surgery.
The tinnitus took me a while to get used to, but you will get used to it. Mine is so loud I can hear it over seeing a live band but I don’t even think about it anymore. Good luck with everything x
I am also on watch and wait and find some days harder than others, i had my second scan on 27th July and have not yet had the results. I cannot get an appointment to see ENT until 16th September , I am hoping they may send a letter before then so i can see the results of MRI.
I also worry that I cannot tell if the way I feel is from the AN or the stress from my diagnosis in January. Plus because of my age 64 and family history I worry do I have the start of Dementia or is it the AN.
It is difficult to feel so helpless and unable to do anything and I can understand that if it is not in your nature to wait but to be proactive then you must be struggling . As the others have said we must look to the positives , this will affect our hearing and balance but it wont take our life.
My hearing loss started about 5 years ago and got worse slowly, I do not like it but I have learnt to live with it and it is only on one side. I think sometimes I must look like a dog turning my head to one side to hear. lol. because of my age people are not surprised that I have hearing problems. I have a friend younger than me who has Tinnitus in both ears where I only have it my one deaf ear, so I am lucky there.
It took me a while to tell my husband and now i have, it has helped in a way but sometimes it is easier to talk to a stranger .
I really hope the medication and counselling help. goodluck x
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Also, yours may be really slow growing and never need surgery. Mine took 15 years to get from being so small it went undetected on an MRI in 2004 (when I was 30 years old) to 1.7x1.9cm in May 2019.
RECENT DIAGNOSIS AN
Small Vestibular Schwannoma
Just Diagnosed
New to me
Newly diagnosed with AN
