Author Topic: what can I do?  (Read 8170 times)

Ellie

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Re: what can I do?
« Reply #15 on: March 04, 2009, 03:28:01 pm »
hi phyl x
as Im an NHS secretary (emergency care not this speciality ~ which is at a different hospital) i know that yes, you can ask for a second opinion, but dont know how long wait would be for 2nd opinion only a few years ago the NHS allowed patients to go to whatever hospital they want for a particular treatment. So you can do that. i will take a look at sheffield.

as they work as a team in neurosurgery at newcastle, and half of them werethere with us yesterday it would not be worth getting a second opinion there. so would have to do some serious quick research at sheffield to see if we could get an appointment there.

it is worth thinking about, i feel what is the rush its not life threatening now is it.

e x

ppearl214

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Re: what can I do?
« Reply #16 on: March 04, 2009, 03:33:46 pm »
Hi e,

Ta for letting me know... remind me, sometime to tell you about my brief A&E visit at 1am a few years ago..... oh, that was rather interesting.  :)

It does sound like, for your partner, it is not life threatening. I know of a few on this site that did have life threatening, but in your partner's case, I believe it is not (as you note)..... and sounds good to get 2nd opinion away from Newcastle. Newcastle may be right about doing the surgery approach for your partner (ie: you had 1/2 the team you met with, they saw the films, know your partner's situation better than us, etc)... and if another doc that does a 2nd opinion concurs with Newcastle, well.. that should help. My hope is that no add'l confusion is added to the mix.

Either way.... a thought worth thinking (as you note).... and hang in there.

I know its late there now so enjoy the rest of your evening!
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Ellie

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Re: what can I do?
« Reply #17 on: March 04, 2009, 04:21:50 pm »
phyl, i just said its not life threatening without really thinkin..... didnt really think why I said that...I just thought as it is not malignant, i assumed everyone who had AN would be same, was i wrong to assume that??

tell me about your experience in a & e where was it? i work in one and have seen and heard it all believe me.

xxxx

ppearl214

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Re: what can I do?
« Reply #18 on: March 04, 2009, 04:27:42 pm »
no worries e... misinterpretation on my part...   There are some that have/had AN's that pressed up against the brainstem bad, that it twisted the brainstem, etc..... has been known to happen, but most folks, much like your partner, catch their's early and yes... definately not malignant and totally treatable.  With today's technology (ie: scans, etc) being what they are, it is much easier to catch them early or smaller.... such as your partner's. Sorry if I misunderstood what you noted.

A&E, up towards Tufnull Park/Camden/N. London, 1am and the drunk that wanted my ailment (different from my AN... I have a few I get to enjoy in life.....) so he could be seen before me... he wanted me to "trade" ailments so he could be seen first by the A&E doc.... sound about right?  :)


Sorry if I misunderstood.... hang tough... and it's late there, so have a great eve!
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Ellie

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Re: what can I do?
« Reply #19 on: March 04, 2009, 05:01:34 pm »
you have nothing to be sorry about phyl , i thought I may have said the wrong thing and i didnt want to upset anyone i dont know anything about this condition. loads to learn.

and regarding your experience yes it sounds just about right!  ha,ha.
 



Pooter

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Re: what can I do?
« Reply #20 on: March 04, 2009, 05:26:30 pm »
*coff*.... avg 3cm, my Pooter! :)  :-*

Phyl

So, are you trying to make my case stronger?  By my count, another cm gives you an extra 5-10 years (estimated based on average growth).  All the more reason to take ones time to investigate ALL available options.

Fortunately, with the having some time, Ellie, your partner can explore these options.  Many, myself included, did not have those options to consider.  Relax, breathe, and research.  There's lots to learn, but you can do it.  We'll be here to help you do it and make sense of it all.

Regards,
Brian
Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:  http://briansbrainbooger.blogspot.com/

"I must be having fun all wrong!"  - Roger Creager

mk

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Re: what can I do?
« Reply #21 on: March 05, 2009, 11:53:08 am »
OK, Vivian first of all welcome and take a BIG breath.

We all know how upsetting this diagnosis is, but the condition is treatable, and the outcomes can be very good.

Your AN is tiny, so you have plenty of time to research your options - they are watch and wait, radiation or surgery. There is no need to rush into anything - and the doctors in Toronto will certainly not pressure you into treatment. Are you experiencing any symptoms right now? Have you seen any specialists yet?
There are quite a few Torontonians and Ontarians recently on the board, so we can offer a lot of perspective and advice.

Take care,
Marianna

PS. To the moderators - should this post be moved into its own thread?
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

irenuk

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Re: what can I do?
« Reply #22 on: March 05, 2009, 01:49:15 pm »
Ellie
did you join BANA (british acoustic neuroma association).?  You will be able to go along to the next meeting in your area or any area and meet other people in the same situation.  Also on the website you will be able to read lots of articles written by Dr's from hospitals all over England who treat AN - Manchester, London, Birmingham, Cambridge, Glasgow and Liverpool just to name a few.  You will even be able to speak to someone on the telephone if you want. 
I can email you an article on the management of AN written by a the surgeon I am under but once you find your way around the site you will also find it on there.

Im sure if there are any other people on here from BANA they will chip in.
« Last Edit: March 05, 2009, 01:51:01 pm by irenuk »

mk

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Re: what can I do?
« Reply #23 on: March 05, 2009, 07:37:16 pm »
Hi Vivian,

I think we have "hijacked" this thread, so it would be great if you wanted to start your own.
But anyway, to answer your questions:
There aren't only horror stories about surgery - there are very good outcomes out there too. Having a very skilled surgeon is of outmost importance.
Normally in Canada the doctors will not advise you to do anything, until you have confirmed that the AN is growing. This means that you will probably be on watch and wait for at least 6 months, until you get another MRI.
There is another forumite "KeepingUp", also from Toronto, with similarly sized AN and diagnosed relatively recently - you may want to look up her posts. I am not from Toronto, but from Kingston, but I received treatment in Toronto.

There are quite a few good neurosurgeons in Toronto, at Sunnybrook and Toronto Western. Also there is a good GK centre, also at Toronto Western. So you have access to good doctors.
Radiation is not only for non-surgical candidates. Yes, it is true that it does not remove the tumour, rather arrests its growth by killing the cells and in some cases there may be some shrinkage. It is generally accepted that radiation (stereotactic radiosurgery to be more accurate) can be used for tumours up to 2.5-3 cms in size, unless there are other issues like brain stem compression etc. The choice of treatment is a personal matter and with an AN of your size you have all the options available - what you need to do is a lot of research and consult as much as possible, so that you will arrive at the decision you feel most confortable with. There is a wealth of information in this forum, so it is a good place to start your research.

Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

Esperanza

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Re: what can I do?
« Reply #24 on: March 08, 2009, 02:00:03 pm »
Hello Elaine,

How awful and shocking this experience is - it is important all the information is gained (like size and situation of AN which will be on a radiographers report and you can ask for a copy to be sent to you - you can also request copies of the MRI on disc) and avenues are explored and it sounds like you are wonderfully supportive.  It must be very difficult for you - I know it has been a difficult year or so for my husband who has been fantastic at organising things for me - although I would say he has learned when to step in and when to step back and I think that is very important for both him, me and our relationship on this AN journey..
As for 2nd opinions - they aren't difficult to arrange and given your circumstances I think you could sort it all quite quickly - a trip to the GP and a few phone calls and faxes....! 
It would be prudent to find out about the experience of the team that is intending to operate - how many a year they operate on and their outcomes, which route and why.  There are some very eminent doctor's to choose from around the UK with lots of experience and most people are happy to travel a bit for their expertise although personally I am still trying to work out how I can get over the LA and have mine out with SBI.... dream on...!!



 
Profoundly deaf suddenly on AN side with vertigo January 3rd 2008.
12mm left side AN diagnosed 20th Jan. 2008.  MRI  in July shows no growth. What do I do now?????

 


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