Treatment in the UK

[Andrew A]

Hi,

I was diagnosed yesterday as having an acoustic neuroma.  I live in Nothumberland in the north of England and I have been told that one of my treatment options is to have stereotactic radiosurgery at Sheffield.  At the moment, I have decided to wait and see what happens and I will have another MRI scan in 9 months time.  If it keeps growing, however, then at some point I will want to do something about it.  Has anybody here been treated at Sheffield?  What was it like?

Thanks for your help.
Andrew

[gloriak]

Hi

I was diagnosed with AN last Thursday.  I live in the UAE and I have been told basically 'get out of here and have it done in the UK or USA'.

Although I am American my insurance covers me practically everywhere EXCEPT the USA.

I have been referred to a Hospital in London - Cromwell Hospital - that is supposed to have had lots of experience in Gamma Knife surgery. 

Do you know anything about this Hospital?  Sounds good to me, I think.

[Andrew A]

I'm afraid I don't know much about the Cromwell Hospital, other than that it is a private hospital, which is unusual for the UK.  Almost all of the larger hospitals in the UK are run by the government through the National Health Service but the Cromwell is independent.  Most independent hospitals in the UK have a reputation for giving a very high level of customer service, one aspect of which is that you tend to get more time to discuss things with your doctors so you should get good treatment.  Lots of rich and famous people go the Cromwell Hospital so you never know who you might meet there!

[ljedwards]

Andrew and Gloria:

I have only seond hand knowledge of Cromwell through reading what others have written; however, Chris Ottewell, a long time member of the old ANA listserv, lives in Bristol, England and is much more knowledgeable.  Furthermore, he is open to being contacted at his email address - chrisottewell@anworld.com - for further discussion.

Hope this helps.

Jeanne

[kim warren]

Hi Andrew

I had Gamma Knife at the Cromwell Hospital Prof. Christer Lindquist, I had it done in 2000 my an was 2.8cm.  Prof. Lindqjuist is very knowledgable on ANs and will look after you.  Every NHS hospital in the UK offer you private treatment and there are a number of private hospitals too.  I eventually had my AN removed surgically as a private patient at Frenchay Hospital Bristol by Prof. Hugh Caoackham who specialises in ANs and studied at Harvard.  I stayed at Frenchay in the ICU for 3 days before I was moved to a private hospital The Glen.  I was treated very well.

Kim

[sdyer]

Hi Kim, Can you tell me what made you go for the gamma knife as opposed to surgury?. i am concidering gamma knife cos i am afaid of the surgury Thanks Steve

[Larry]

Hi guys,

Thought I'd add my two bob's worth.

I had middle fossa surgery 3 years ago and the an has returned. My ent now says that there is enough evidence that says, if the growth is small enough then don't treat it, watch and wait. It may not grow into anything that needs doing for many years. he also said that, following research, he no longer does the MF approach and will no longer operate on small an's.
This board has been fantastic regarding treatment alternatives. I am watching and waiting on my regrowth and will not go through surgery again - very invasive and I have had debilitating headaches for 3 years. I will certainly be adopting radiosurgery when i have to.

Larry

[Kathleen_Mc]

Andrew: I myself do not know of doctor's in England, I live in Canada however I could suggest to you that you could but a post on the message board of ANAC (Canadian based message board similar to here) and address your question there as well. We do have a member Lorenzo who lives in Southern Ireland so he may know of the doctor's in England....he himself travelled to (I think) the U.S. to have Gammaknife. Kathleen

[kat]

Hi Andrew

My name is Katarina  I am 57 years old and I live in North Yorkshire UK. I was diagnosed with 2.2 cm AN in JUne 04 and after much research on the internet as well as appointments with specialists who only recommended surgery I finally managed to persuade my GP to refer me to Sheffield to see if my AN was suitable for GK . I had my GK there  in April 05 and for me the procedure was troublefree and apart from a feeling like jetlag for a few days after I was back to normal . I found the team in Sheffield very friendly and professional. I felt fine till a few weeks ago when I started to have some discomfort and some shooting pains in my head . I saw my GP who organised an MRI scan for me as well as an appointment in Sheffield . The
MRI showed that the tumour had not grown since my first MRI scan and the conclusion was that there was no cause for alarm since in some cases pain can be experienced  6 months after GK which may last for a few months only. My doctor prescribed some good pain killers and I am now pretty much back to normal and  my next scan will be in 1 years time .
It is early days yet but since I still have some useful hearing left on my AN side and I am happy to have chosen GK instead of
surgery  . I would be happy to give more details about my GK experience in Sheffield if needed .

Happy Christmas to all Katarina   

[kimmy]

Hi. I am a 64 year old and had translab surgery at the Manchester Royal Infirmary in England performed by Professor Richard Ramsden, a very experienced and expert surgeon in A.N's. I had it done in August '05 and was in hospital for 10 days. Now, 5 months later, I've been back at work since the end of October and have regained most of my facial function, my eye is now fine. All in all a very successful operation. Hope you find something to suit you. Good luck.

[ppearl214]

Hi all,

shhhhhhhh... my boyfriend lives in SE London (Brixton/Herne Hill area) and does university research for work... so, I asked him to see if he could find those that deal with AN in England and London (proper).  Please see his email to me below with 2 terrific links for finding AN specialists and hospitals in your area.

I hope this helps.
Phyl

================================

There are bits and pieces on the web, but the only full list of specialists I've been able to find is http://www.specialistinfo.com/index.php registration is required, which I have not done but it looks like if you do register when you look at a list like http://www.specialistinfo.com/thget.php?t=t_si&r=neuroma the name of the consultant will be filled in and further information revealed.