A day in the ED

[NoFurtherAction]

I don’t know if this will sound familiar to anyone but I recently spent a day in the ED of my local hospital because since Tuesday 26th I’ve been having terrible headaches, fatigue, bad vertigo, stiff neck, shooting pains in face/eye /jaw and now I’ve lost some sensation in my mouth, all on the side of the AN. This seems to have come on overnight but things have generally been getting worse over the last few weeks. This is an escalation.

However.. I had a bang on the forehead a couple of weeks ago and this has complicated matters. My scheduled 6 monthly MRI was due on Thursday which was also when I was told to go to A&E so I cancelled it for a CT scan on the advice of my GP, that didn’t show much that was conclusive, so I’m getting a MRI scan tomorrow. Thankfully though, it’ll be a same day result rather than the 20 weeks it normally takes to get the results. My last scan in May showed no further growth apparently, but I didn’t get a letter until October informing me of the ‘good news’ !

Has anyone here had an escalation of symptoms suddenly like this?

Many thanks

W

[whiteleye]

I had a similar experience after being diagnosed with an AN two years previously; deafness in that ear was the only symptom. Treatment was "watch and wait." My experience was a sudden bout of vertigo (I had never had this before) to the extent that I could not get out of bed. My daughter took me to ER and they diagnosed vertigo and dispensed a med that did not help. The vertigo gradually disappeared but I have had dizziness and imbalance ever since. It is always there, in the background, worse when I am tired and weave like a drunk person. This occurred two and a half years ago; ENT thinks it is caused by the AN and the only treatment has been a couple of rounds of vestibular rehab. I suppose I have learned to live with the dizziness and am grateful the vertigo has not returned. I am 79 years old and feel that treatment with surgery is not an option. My understanding of gamma knife is that it would probably make my dizziness worse as the tumor swells after treatment.

I hope you feel better soon and get some answers.

[NoFurtherAction in reply to whiteleye]

Thank you for your reply whiteleye. The docs seemed to think that my new symptoms were associated with the bump on the head until I had the MRI yesterday and it showed growth, not much, but enough to be nudging the trigeminal nerve. I’m hoping the balance will right itself again enough for me to get on with life, as it is I’m in bed quite often at the moment. I’m currently considering getting some gamma knife- I expect the ENT consultant will suggest it now, but I also am worried about the possibility of further vertigo. It’s horrible and not easy to live with. Seems to be downplayed quite a bit by the medics but I’m hoping it will settle as it did for you. Thanks again, W

[FERNBROOK]

To those dealing with AN symptoms it can be distressing enough to warrant a visit to ED..unfortunately with a previously diagnosed AN it's regarded as a non emergency and the department will be in a hurry to move on to the cardiac arrest waiting in the corridor.It can be challenging to deal with all the vestibular issues and become isolating as it's not easily seen or communicated. Having said that I would say intervention, in my case Retrosigmoid surgery, is not always the answer. In many cases symptoms persist or worsen despite tumour removal or being zapped with radiotherapy..Watch and Wait is an important monitoring treatment as tumour growth is often erratic and generally slow. In retrospect I would not regard it as a limbo stage. Often it's all you will require.

Vestibular exercises to help rewire the brain both pre and post surgery/GammaKnife etc to cope with all the vestibular problems are gold dust. The repetition is the key. It can seem boring but persistence pays off.

[NoFurtherAction in reply to FERNBROOK]

Thanks Fernbrook, I’m feeling a bit better today and I think my brain is adjusting to the new normal. I was once given an appt for vestibular physiotherapy (and for tennis elbow at the same time) but the therapist said VP wasn’t very effective for AN patients. Perhaps he wasn’t trained fully, I don’t know, Anyway, he didn’t give me any vestibular exercises…I’ll ask the ENT consultant about it.

[FERNBROOK in reply to NoFurtherAction]

Vestibular exercises are the gold standard treatment for acoustic neuroma in order to retrain the brain. Frankly I'm staggered to hear a physio say otherwise. Hope you have better recommendation from ENT.

[LeamCubb]

I have been dealing with a 1.2cm AN for several years. I remember sudden issues with vertigo before diagnosis but have not linked the two. I had gamma knife treatment in 2019 but my follow-up MRI was delayed by covid (subsequently a small increase was shown but this was due to the gamma knife). All other issues have come on gradually, I started with hearing issues (now completely deaf on the one side) and have also experienced some issues with the facial muscles on the same side. I get some numbness - feels like I've been to the dentist! I also have a slight issue with 'dribbling' (or feeling that I am) but my worst problems have been with my hearing and balance.

I use a walking stick or someone's arm whenever out of the house and try to concentrate to avoid falling over. My latest MRI review in October showed no growth and I am now on a two year MRI review.

All I can say is my symptoms are on the whole copewithable, having just spent nine months going through a mastectomy and consequent chemotherapy etc., there are far worse things I have had to face!

[NoFurtherAction in reply to LeamCubb]

Oh crikey, you poor thing having all that to deal with. Not fair! I hope you’re okay now.

Thanks for the input. Copewithable is an excellent word, and currently my symptoms, although worse than last week, are now copewithable…I’m just concerned that I’ll be needing help in the future/after treatment ‘cos I live alone. I haven’t come to terms with needing help, now or at any time, but I have needed it, with shopping and appointments so far. I hate asking for help.

Good luck to you

Wx

[LeamCubb]

Thanks, I understand your concerns, I've had similar regarding my AN - they've just taken a back seat this year due to my more pressing health issues, but I'm learning to live with everything that's being put on my plate.....

[059456]

I have terrible dizzy spells and headaches made worse when I fell the full flight of stairs during a dizzy spell. They happen every time I stand. My AN is large and I am waiting for the operation which won’t be until next year. Because of the additional symptoms I had another MRI and was diagnosed with hydrocephalus. I had a brain shunt operation 2 weeks ago and wow my headaches and dizzy spells have gone. Can’t believe the difference. I wish they had done this earlier. I have been living with these additional symptoms for months. Since the op though my facial numbness has increased and I can barely feel food when eating. I have also become very thirsty. I still think it’s an impovement from dizzy spells and headaches. Although my symptoms had changed. The MRI showed the AN as being the same size. It’s quite frustrating and confusing. Sending best wishes to you

[NoFurtherAction in reply to 059456]

Thank you I was concerned that I was having symptoms of increased pressure but they haven’t mentioned it so I’m assuming it’s not an issue. Still nothing from ENT about an appt at clinic though. I woke up this morning with a bad head/face pain and more dizzy again today. And so tired! I hope they’ll tell me more at the clinic.. best of luck 059456