I have been referred to Birmingham bu... - Acoustic Neuroma ...

Acoustic Neuroma Support
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I have been referred to Birmingham but want Bristol. Can you recommend a consultant in Bristol?

Scottie1954
Scottie1954
15 Replies

I have just discovered I have AN and have yet to see a specialist. Is there anyone you recommend? I live in Cheltenham so would prefer to go to Bristol rather then Birmingham. Does anyone have experience of either?

15 Replies
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mrwhite

I've been treated at Birmingham for the past 5 years, most recently with Cyberknife.

Bristol has a good team but Birmingham has in my opinion an even better one, with more treatment options available and latest technology. No harm in having a second referal to Bristol after and see which you prefer but go with best option not location

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Junedoreen
Junedoreen
in reply to mrwhite

mrwhite I have just been recommended for Cyberknife. I had surgery last August for a large AN but need further treatment to finish it off! Can you tell me anything about your Cyberknife? I will be having it at the QE. Thank you in advance - terrified all over again!

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mrwhite
mrwhite
in reply to Junedoreen

Hi are you a memeberbof the bana forum ? Last year I wrote a lengthy blog with photos and a small video clip there bana-uk.com/ . if not check out this website for the Harley st clinic which gives a pretty good overview too. thecyberknifecentre.com/en-...

While it is understandable to be anxious, believe me it is nothing compared to what you have already been though with surgery. It is not without its own risks but again those of surgery are higher.

BANA is having its AGM at the end of June at the QE and the lead Cyberknife team are giving a talk and tour of the facilities so if you were to join you could attend and have a really good look around and get access to mulriple consultants q &as at once. If you need any more details, let me know and i can try reposting the blog details here if you camt access them on the bana forum.

Good luck

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Junedoreen
Junedoreen
in reply to mrwhite

Many thanks. I am a BANA member and have been trawling the website but can't locate your blob, which I would love to read. Do you remember where on the site it is? I have been helping to organise the BANA AGM so am looking forward to the tour of the Cyberknife Unit, the Consultant said that users can tour at any time if they need to so, if I decide to go ahead, which I'm sure I will (do we really have a choice?) then I may go before as I want to get this done and start recovering as soon as I can. Do you know if those who have had surgery recover any differently to those who just have Cyberknife? e.g. my inner ear has gone so is there more room for swelling of the brain? thanks

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mrwhite
mrwhite
in reply to Junedoreen

bana-uk.com/index.php?optio...

You should be able to direct link here

I also had a tour around so its worth while if you want to do it before then. I'm now sure how sensitive your head is but you may find the mask making a little uncomfortable but its quick and not painfull.

Recovery of Cyberknife is generally quicker, less severe and fewer complications than surgery but of course it all depends on location of it and personal health/ circumstances

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Junedoreen
Junedoreen
in reply to mrwhite

Many, many thanks for this- what a fabulous job you have done in helping us all to make sense of it. How are you now?

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JJWKent

The only AN consultant I know of at Frenchay Hospital in Bristol is Richard Nelson - he has a good reputation and is a very nice man although I don't have any experience of him as a Consultant - just met him when he gave a talk to the South West BANA group.

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keithzx12r

I live in Cornwall. At the time of my surgery 26 years ago there was no surgeon in Cornwall to perform the work so I travelled to Oxford for the procedure. I was quite poorly after the op and was in Oxford for three weeks. This made it difficult for my wife, business and family. I would stick at it and try for Bristol. My post op problems would probably have not been so bad with up to date procedures. There was no gamma knife at the time either. Best wishes for a good outcome, Keith

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Scottie1954

Thank you. Last week I had my first appointment with the consultant in Birmingham and am now happy to continue going there.

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Yorkshire-Yellow

@Scottie1954. Sorry to hear you've had to join the club!

I live near Stroud and work in Cheltenham. I was referred to both Bristol (by the ENT consultant I saw at Emersons green NHS centre) and to the Birmingham (by my GP, who'd had past dealings with them).

Bristol totally messed up my initial appointments (they sent me to the wrong hospital on the wrong day and at the wrong clinic time...!!!), so I removed myself from that list and continued with Birmingham.

I initially saw Mr Walsh on the NHS in Birmingham who I found to be a top, top guy. Very easy to deal with, patient and understanding. As I;m lucky enough to have private medical cover through work with covered AN's, I went private with him at The Priory Hospital in Edgbaston and had my AN removed there in December 2012.

I've seen both him and the other surgeon involved in my treatment there several times since for standard check ups an the like, and have no complaints whatsoever.

Whilst The Priory is not directly accessible by train, the Queen Elizabeth Hospital in Birmingham is, which I have found to be very helpful for the times I've been there, particularly before my AN was removed and in the latter stages it made sudden head movements sometimes uncomfortable.

It's of course up to you, but I'd see if you can see a couple of people. After all, this is a big thing for you and you'll doubtless feel more comfortable on your 'journey' dealing with a team of people you develop a good relationship.

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Scottie1954

I had my first appointment at Mr Monksfield's clinic on Wednesday. I was greatly impressed with both the hospital and staff. I am going back there to have another MRI with a view to having cyber knife treatment if necessary. (They had not received my initial MRI scan.) Thank u for taking the time to respond.

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Linzipops

Hi, if you choose Bristol be prepared for a long wait! I was referred last January (2013) for my AN regrowth (I had my previous surgery at Frenchay 10 years ago but with a different surgeon) and I have yet to see Mr Nelson. Im hoping he is worth the wait........

Linzi

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Scottie1954

Sorry to hear about the wait. I decided to go to Birmingham after all and had my first appointment last week. Let's hope they are as efficient with the next appointment:)

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Linzipops

Glad to hear you've had your initial appointment! That was certainly quick.......I'm still waiting!!!! I think I may have to set up camp outside the hospital ;)

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bypass

Rick Nelson is excellent. His department is moving from Frenchay to Southmead in May so you may have to wait a while though. Could be worth a short wait as ANs do not usually need urgent treatment

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