40mm AN - Has any one else had one of... - Acoustic Neuroma ...

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40mm AN - Has any one else had one of a simular size?

Hzw1994
Hzw1994

Hi, I am 25 and was diagnosed with a 40mm AN before Christmas, and having to wait over a month to see a specialist. I don't get why it's such a wait. It's a long time to wait and not knowing much.

Apparently my AN is affecting my CSF flow does anyone know what this does?

Also has anyone had one of a simular size and what treatment plan did you choose?

Did anyone have struggling swallowing and have severe pain in there ear area? And persistent awful headaches?

I feel like I am alone with no information. Any help or advice or experiences would be amazing. I have a partner and kids to think about and I want to be prepared as possible. Thank you

9 Replies
oldestnewest

I think I replied to you before but had no reply from you. My advice is depending where you live get yourself to Clatterbridge NHS Cancer Centre in Birkenhead and see Professor Michael Brada who is a leading UK expert in ANs of this size. He was at Royal Marsden when he treated me in 2002 for 3.8 cm AN using fractioned stereotactic radiotherapy and I was based in Somerset. If Clatterbridge is too far then get your GP to refer you to the Royal Marsden. If the CSF cerebospinal fluid is affected you really should be treating yourself as an emergency. If it was me I would pay the £140 or whatever it costs to see Brada or a consultant at Royal Marsden and get an opinion asap.

Do not let anyone treat you with Gamma Knife surgery which is a one off high dosage blast of radiation. If you have CSF problems this may aggravate the AN and you may need a shunt inserted in your skull to drain off fluid.

You could have surgery. I opted not to as I wanted to retain the 0.01% of hearing I had left. Surgery means you will lose your hearing as surgeons usually go straight through the eardrum to get to the tumour.

Radiotherapy lasts 6 weeks as you will receive low doses of radiation Mon - Fri. You may feel sick so steroids may be prescribed. But eventually your balance will improve, tiredness and headaches will reduce. Also look at acoustic neuroma association or BANA for more info. Good luck and contact me if you need more help.

Hzw1994
Hzw1994
in reply to levelslass

Sorry I didn't reply, my head has been all over the place. Both them hospitals are over a 2 hour drive from me. I am waiting to be seen at QMC. I cant hear anything in my left ear really so I am not bothered if I loose it. I just want a quick easy fix so I can get back to looking after the kids properly again. Thanks

levelslass
levelslass
in reply to Hzw1994

It will take at least 6 months as long as there are no complications and blocking of CSF is a setback. Problems swallowing etc will diminish. Would still get Brada to give you an opinion. Please look him up online. If you prefer to continue at QMC then phone them on Monday and say you need to be seen next week as symptoms getting worse. They cant leave you for a month with a known cerebrospinal fluid issue. Brain swelling or hydrocephalus can result.

Hzw1994
Hzw1994
in reply to levelslass

That is longer than I expected. I will look him up. I have swelling behind my ear too, my partner noticed when she was giving me a haircut the other day. Will call QMC Monday too

Leodo
Leodo
in reply to Hzw1994

Hi sorry to hear your story, we started of at the QMC, (we’re from Derby) response was very poor directed us to Sheffield eventually had gamma knife at Leeds LGI. Dr Stuart Ross privately, but he has now retired. The wife had high CSF after the op so then had a shunt fitted. It’s all working 2 years later the mri shows a reducing sized AN. Suggest you make a nuisance of yourself you should not be hanging around with your condition. Are you having any side effects? Facial palsy

Eye problems, balance issues etc. You could call Leeds direct but suspect they will need your Gp referral. Hope this helps, good luck

Hzw1994
Hzw1994
in reply to Leodo

Random bluriness in left eye, balance issues, slight numbness on left side, pins and needles on left side.

Might go and see my GP Monday and Express my concerns too. Thank you

levelslass
levelslass
in reply to Hzw1994

I mentioned Gamma Knife radio surgery in first post. Go online to Pub Med National Library of Medicine and look at clinical results of GK radio surgery. Shunts are very common and very high doses of radiation. FSR is a much gentler option. Look up acoustic neuroma or its other name is vestibular schwannoma. Mine was 3.9 cm and had to do sonething as would have started fitting. Problem with surgery is it can't always be removed completely without risk of facial paralysis and may regrow. The good side is it is benign and treatable by Stereotactic fractionated radiotherapy. Definitely get yourself to Professor Brada. Pay your £40 to get your MRI scans put onto a DVD. Then speak to him and email him the images. He will be able to tell you immediately whether he can treat or not. Good luck

£40 to NHS X ray dept.

Teashop
Teashop
in reply to Hzw1994

I don't think there is a quick fix .l have 2.5 cm AN diagnosis just before Christmas and going to Walton Centre next week.

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