I wrote a while ago about my 20yr old granddaughters diagnosis of a large AN and the cancellation of her operation due to an emergency. Well she still hasn’t had it removed and we all becoming really concerned. She has been to St James in Leeds for various scans, she has been told she is at the top of the urgent list. She has been having headaches and she has become really sensitive to noise of any kind. She went to her GP who told her the headaches are because she has been told she has this AN in her head. Even if that was true what a way to deal with it, we do not think the headaches are psychosomatic but I wish I had been there with her. When do you become an emergency. Please give us some words of encouragement as we are just about out of it.
Daughter just rang me to say that Ashley is in A & E at present with double vision and headache and very frightened.
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Tikaneko
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Hi I suffered horrible headaches,hearing and visual problems also dizziness. I was diagnosed with my AN in the October 2015.I had operation to debulk the tumour June 2016 size of my AN was 28mm.hope she gets sorted soon
I’m sorry to hear that your granddaughter is having a hard time, it is very difficult to deal with the unknown, especially when you have pain and other symptoms, and keep getting put off by the specialists.
Have they not told her why her operation was delayed again, I seem to remember it had been re-scheduled for 28th September?
Perhaps, if she is willing, you can call her specialist and ask what is going on. I had my partner with me for every hospital visit to make sure I had someone to ask the things I forgot and to remember everything with me. I also asked for the email address of my specialist and he would respond when he finished his working day, once responding at 01:00.
The GP isn’t really the one to advise here, in my opinion.
She, and her family, are quite within your rights to ask what is happening, why is .....?, when will.....?
Try to remain positive, try guided meditation to relax, all of you, a more relaxed mental state will only help, and remember - only worry when there is something to worry about, at the moment she is in the system, AN are generally very slow growing. Also, my symptoms would fluctuate, perhaps hers will also?
I know it is hard to wait, for her and her family, and I hope you can speak to her specialist soon to find out more.
Cancellations are happening so much lately but you can ring the docs receptionist, or your GP can to explain her symptoms and ask to expedite her apptd. good luck. She is bound to feel stressed. Good luck x x
I am so sorry to hear of your granddaughter’s situation. It must be terrifying for her. I sympathise with her as although my AN is small I too get headaches which I was told was non related. Good luck I hope she has her op soon
She was admitted to hospital yesterday, they contacted her neurologist who said that he wasn’t too worried just yet. Keep her in and observe. She has fallen over and cut herself. They will not do an MRI on a weekend so an optician has had to check if there is pressure behind her eyes. The AN was 35mm and hopefully it won’t have grown anymore.
Thank you all so much for your support and helpful words. It means such a lot. D xx
Hi , how is your granddaughter? I was very concerned hearing about it. It must be very worrying for all of you particularly as her operation was cancelled and to hear their is no MRI over the weekend is just staggering. All my best wishes to her , you and all her family .
Gosh where to start, you couldn’t write what’s been happening. the hospital kept her in for 4 days and still no further on. The optician came and said there was pressure behind her eyes, which we obviously knew but she needed an MRI to show what the pressure was. Talk about wasting resources. She was discharged and told there would be an appointment with an ophthalmologist, she attained this and was told there was calcification behind the eye that is being affected by the tumour!!!! Today however she received 2 letters, one from here in York asking her to go tomorrow to find out why there is calcification the other letter was from Leeds St James asking her to go to Leeds for the same reason then to LGI for a neurological assessment, all in the same day. Obviously she rang York and told them that she had to go to Leeds so wanted to cancel the appointment. No they said we would still like to see you your appointment will now be December. We are all going scatty and my poor granddaughter is so stressed with it all. We realise the NHS is struggling but Flipping heck!!!!!
Hi , I am so sorry she appears to be no further on . How stressful for her . Is there any chance of asking her doctor to intervene may be by phone to clarify the situation , though to be honest he doesn't sound very sympathetic to her situation , although may be by now she has been to two of the appointments . Please stay in touch and let us all know how she is , it could be anyone of us ! So sorry this is happening to her .
The latest report. she had her appointments in Leeds and the outcome is that the aN has caused fluid buildup behind her eyes and that must be dealt with urgently. They have put her on steroids for 2 weeks then she has another assessment if the fluid is still there then she has to have an operation to get rid of it before they can deal with the AN, if they operated on the AN in the present state then it could be a
Catastrophe. Nice of them to let us know. It makes me wonder if all this waiting has caused this problem.
Best of luck to Ashley, never heard of anyone so young getting an AN diagnosis. Mind you, we aren't usually checked for one at that age. Hope all goes well.
She was diagnosed because she had a CT scan after bumping her head at work and ended up with concussion. Not sure how long it would have been before it would have been found. How do they know it is an AN?
I suppose they know what they're looking at on the CT scan. I've a different sort of tumour on the other side of my head now having survived the three man's on the left. The gp's don't have much experience with acoustic neuromas!
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