I have been diagnosed with this tumour. It is a small one currently sized at 1.2cms. I was referred to my ENT at the local hospital, which is located in a small town. On being informed of my diagnosis I was told my treatment would be carried out within this hospital. I requested information about regional centers and radiotherapy treatments. I was told, if I opted for radiotherapy I would be treated else where, but any surgery would be carried out in the local hospital.
This information was given as I was showing concern of the experience of the local consultants, dealing with this condition. (One highly respected neuro consultant in the area, has shown an operation in which he performed. He, talked of taking out the whole of the tumour, and a statement that all patients suffered facial damage. Some of which improved in two years.) I was told the surgeon I was being referred too was very experienced, (I can't even find his name listed on the hospital website!) and that i shouldn't worry. Questions regarding how many patients with this condition he had treated were deflected. I was being told, I would not be able to be referred to a regional center for this condition.
Following this appointment, I went to speak to my gp. I was told, I had no choice in where I would be treated, that it was in the hands of the ENT department and I should speak to them. But was also warned not to alinenate them as this would be detrimental to me.
My question is, who do I go to in order to choose my treatment in a well established facility for this condition. Do I really have no choice once I have been seen by one hospital, regardless of their lack of specialist equipment?
Written by
Anglina
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Firstly you MUST ask for a referral to a radio-surgeon. After seeing him or her, you may decide to go with conventional surgery BUT you need the full information in order to sign a consent form for whatever treatment you have - othyerwise it cannot be considered "informed consent"! Personally, on the basis of the information you have been given I would not go with the local team as their results are clearly NOT in line with established good practice. Get as much education on ANs as you can - you can start with this web site anworld.com/ You can also ask on here and join one of the various Acoustic Neuroma Facebook pages - but be careful with these as many are international and health systems vary tremendously across the world. Finally, they used to say that a surgical team needed to perform around 500 AN surgeries to reach top standard so a local UK hospital is not likely to be first class at this unless it specialises in them in which case they will tell you that. If the NHS will not give you a Radio-surgery opinion you could ask the team who treated me in New York. They will give you a free, no obligation consultation using email, phone and post as appropriate. Contact them at rsny.org/ Good luck.
I think the progression of treatment is first wait and watch, second, radiotherapy and third, surgery. My ENT consultant told me that surgery is done in the rarest of rare cases and in most cases, radiotherapy, which shrinks the tumour, has been found to be enough to control, if not eradicate the tumour. You may tell your Hospital that in view of the risks associated with surgery you would prefer to opt for radiotherapy and therefore they should refer you to the nearest hospital, where this treatment is available.
Gosh . Get a new GP for starters . My experience has been totally opposite to this advice from the GP was to find the best Specialist in the South to managed me . I was referred to Guys and the various options have been discussed and I am being monitored on a regular basis (MRI now 2 yearly). My preference is to be treated with Radiotherapy when or if the time comes .
I had a similar sized AN. I was offered surgery/radiotherapy. Treated in Clatterbridge, Uk last year. 12 months later, back to normal, working and feel fine. Review in a couple of months. Disclaimer ; I am a surgeon myself and didn't want brain surgery just yet!!. I am aged 61 so wasn't too worried about radiotherapy. Incidentally, I was 100% throughout the 30 day fractionated radiotherapy sessions (FRS) . Also, went for FRS to preserve hearing
"My question is, who do I go to in order to choose my treatment in a well established facility for this condition. Do I really have no choice once I have been seen by one hospital, regardless of their lack of specialist equipment?"
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