Author Topic: I've just been told I have an acoustic neuroma  (Read 10105 times)

blacksheep

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I've just been told I have an acoustic neuroma
« on: February 09, 2014, 03:31:10 pm »
Hi Everyone,

I'm in the UK and have just been told I have got a large acoustic neuroma 1.7mmx1.4mm. I'd had a new tinnitus sound since last summer in addition to my usual tinnitus and had been nagging my GP about it and he eventually he sent me for an MRI just before Christmas.

I was referred to see an ENT consultant and was not impressed with his handling, he warned me that one of his patients had died following surgery and that I should plan for me never being able to possibly work again, not to take on any long term work commitments and finally to have a holiday if I could afford it before the sh*t hit the fan!?!?!?!!?!?! It was not exactly reassuring and he said that it wasn't really something he could advise me on as he was not an expert.

I have to say I feel totally gutted. I spent a lot of time trawling the net and I'm disappointed in the options available especially in the UK. It appears that there are more options in the US than in the UK which is frustrating but the act of treating/removing the neuroma seems to cause as many problems, if not more, as the neuroma.

Having had cancer when I was 21 the thought of radiotherapy does not appeal especially when it can cause damage and would leave me having to have checks for the rest of my life.

Then there is all the talk about Bio 30 propolis but I haven't seen any actual evidence on the internet from anyone that has tried it and had any success, just lots of people talking about it, and statements from Dr Maruta, so I'm guessing it is something with more hype than real substance otherwise it we'd all be given it.

Sorry if I seem so negative I just feel trapped and don't feel like the choices are that great. I'm waiting for my neuro appointment at the moment but modern medicine doesn't seem that advanced. I like the sound of the endoscopic surgery but I don't think the NHS allow that at present and from what I can tell they are not keen on the middle fossa approach either. It wouldn't suprise me if translabyrinthine is the favoured approach.

Apologies for my ramblings, I'm just fed up.

Jim Scott

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Re: I've just been told I have an acoustic neuroma
« Reply #1 on: February 09, 2014, 05:19:27 pm »
Blacksheep ~

I'm sorry to learn of your AN diagnosis and subsequently discouraging experiences with that insensitive doctor and the NHS in general.

As an American, I cannot offer any credible advice on dealing with the NHS but we have other U.K. members who may be able to advise you how to navigate the system to your advantage.

That ENT consultant was badly misinformed.  Although acoustic neuroma are challenging for the surgeon, the mortality rate associated with AN surgery (all types) is infinitesimal and should not be a factor.  Post-op complications do happen and can be daunting - but are not guaranteed.  I had almost none at all and was back to (relative) normal within a few months.  That including driving again (on the highway) within a fortnight of my surgery.  Undergoing AN removal surgery doesn't mean one has to prepare for the End Of Life As You Know It, simply be cautious about who performs the surgery and have realistic expectations.

Incidentally, your AN is not what is generally considered 'large'.  Mine was 4.5 cm and was successful 'de-bulked', then radiated almost eight years ago and today, I'm doing well with only the most minor of 'reminders' that I once underwent AN surgery.  Life after an acoustic neuroma excision does not have to be all doom and gloom so please try to ignore the nonsense that doctor gave you.  He was ill-informed, at best. 

I trust your message will be receiving responses of both encouragement and advice from other members located in the U.K.  We're a AN support group and will try to do whatever we can to assist you as you begin this journey no one wants to take.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

blacksheep

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Re: I've just been told I have an acoustic neuroma
« Reply #2 on: February 09, 2014, 06:26:34 pm »
Thanks Jim,

I have to say I was a little surprised that they were saying it is large given what I had read on the forum.

Hopefully the neuro consultant won't be such an insentive person and will be a little more enlightening.


kmr1969

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Re: I've just been told I have an acoustic neuroma
« Reply #3 on: February 09, 2014, 06:58:41 pm »
Black sheep,

I can remember having the same feeling after I got my diagnosis.  Fortunately, my ENT stressed the positive aspects of this type of tumor: almost always benign and slow growing.

While I never got totally comfortable with the idea of brain surgery, the more research I did and the more doctors and former AN patients that I talked to the more optimistic I became.

I agree with Jim, your AN is not large.

While I can understand your concern over radiation due to your previous cancer, you should not discount it as a very viable option for you.  Due to my age, 43, and tumor size, almost 3 cm, radiation was not the best option for me.

I hope someone in the UK will give you some feedback, but until then keep doing your research and keep an open mind on treatment.

Best wishes,

Ken
2.7 cm AN diagnosed June 2012
Translab completed November 2012 at House Clinic
SSD; numbness on face and in mouth, plus poor taste buds, but happy with how I am doing so far

kcarloy

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Re: I've just been told I have an acoustic neuroma
« Reply #4 on: February 09, 2014, 09:45:35 pm »
Agree with everyone, your AN is not large, you have time to let things sort themselves out. Its not surprising you are feeling the ups and downs we all went through. You should get some answers and guidance when you see the neuro, bring a list of questions with you. Good luck, Karen

mesafinn

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Re: I've just been told I have an acoustic neuroma
« Reply #5 on: February 10, 2014, 06:55:30 am »

"I was referred to see an ENT consultant and was not impressed with his handling, he warned me that one of his patients had died following surgery and that I should plan for me never being able to possibly work again, not to take on any long term work commitments and finally to have a holiday if I could afford it before the sh*t hit the fan!?!?!?!!?!?!"

I had a similar bad initial ENT experience and learned quickly that I was the one who needed to learn more about ANs.  I spent significant time learning about what an AN is, how to treat it, and who best to treat it.  I gently suggest finding other experts within the UK who can help.  They are there.  But I would also consider the possibility to travel if that's possible for you.  Your news is not as dire as this inexperienced ENT suggests.......pause and re-boot.   You will find a lot of support here, and you are not alone.
Oct 2012:  Constant Pulsatile Tinnitus
Feb 28, 2013: Dx AN 1.4 cm X .9 mm
April 19, 2013:  GK at UPMC w/Dr. Lunsford

Some things in my life need to matter less, and other things in my life need to matter more.  So yes, I'm taking this as a "lesson learned experience."

ampeep

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Re: I've just been told I have an acoustic neuroma
« Reply #6 on: February 11, 2014, 02:58:48 am »
It's a good thing you found this site!  Sure looks as though you were given really bad information by that ENT.

Cheer up!  Things are not nearly as bad as presented to you.
8/2/13 - diagnosed 1.9 CM right side; 1/13/14 - MRI it got bigger!; 2/10/14 - GK; 8/18/14 - shrinking; 8/17/15 - still shrinking, reduced symptoms

blacksheep

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Re: I've just been told I have an acoustic neuroma
« Reply #7 on: February 11, 2014, 05:03:46 pm »
Thanks Ken, Karen, mesafinn and ampeep for your reasuring words.

elsie

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Re: I've just been told I have an acoustic neuroma
« Reply #8 on: February 12, 2014, 10:26:14 pm »
Man, i completely concur with all that has been said, was madly looking for the "Like" button for all the replies.  get a second, third or fourth opinion.  these are nasty buggers, made worse by inept doctors.  find a specialist who knows these tumors inside and out.  the outcome is not always pretty, but any md who talks the way yours did should be completely ruled out for future treatment.
Very large AN removed Aug., 1988 - pushed cerebellum aside, touching brain stem
Dr. Wiet in Hinsdale did 12 hour surgery, got it all
Total right-side facial paralysis for 6 months, 50 - 75% return
Extreme dry eye and tinnitus in both ears
Lost all hearing in AN ear
1/8/14  AN Regrowth confirmed

Alison

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Re: I've just been told I have an acoustic neuroma
« Reply #9 on: March 23, 2014, 04:44:28 am »
Hi Blacksheep,

sorry to hear your diagnosis. It is a shock at first.

I'm in the UK and have posted a lot on here about the UK experience. Your AN would be counted as medium, not large. Mine is currently around 17.5 mm. I had radiosurgery in Dec 2012 and it has swollen since, increasing my symptoms of imbalance, tinnitus etc.

I saw an ENT first who sent me for the MRI which showed the AN. I was then referred to a neurosurgeon, who recommended radio as he didn't like to operate on ANs unless they were big, ie 3cm, saying radio was safer.

Whereabouts are you in the UK. I can help with info about the centres here in the UK and pse ask anything you like.

Alison x
CPA and IAC AN 14.5mm x 10mm x 8mm diagnosed August 2012 treatment in UK SRS Linac with headframe  Dec 2012 MRI 4 month post April 2013 was 18mm x 13 x 7.8 (this April MRI was not measured until Jan 2014) MRI January 2014 was 17mm x 11.4 x 8.3 (one year post)

blacksheep

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Re: I've just been told I have an acoustic neuroma
« Reply #10 on: April 27, 2014, 04:33:31 pm »
Hi Alison,

I live in Northamptonshire and have been referred to the Queens Medical Centre next month, not lucking forward to going to be honest.

Sorry to hear that the radiotherapy has not helped

The more I read I must say the more inclined I am to leave it alone.

john1455

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Re: I've just been told I have an acoustic neuroma
« Reply #11 on: April 27, 2014, 07:02:54 pm »
Your AN is actually classified as "small" and, as such, watch and wait is a perfectly acceptable option but you should have it monitored. The anausa.org website will tell you just about everything you need to know about ANs (pull down the "overview" menu). The more you do your own research to educate yourself about your condition, the less intimidating the whole situation will be.
Diagnosed with 19x16x19mm cystic AN right side on 7/2013
MRI on 3/2014 showed AN increased to 21x20mm
right side 70% hearing loss, tinnitus, balance issues
CK at Stanford completed 3/21/2014 (3 sessions)
Dr Steven Chang and Dr Iris Gibbs

Kat From Indiana

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Re: I've just been told I have an acoustic neuroma
« Reply #12 on: April 27, 2014, 09:25:59 pm »
Sorry to hear that the radiotherapy has not helped

The more I read I must say the more inclined I am to leave it alone.

Blacksheep, what and where are you reading about radiotherapy that is putting you off of it?  I am looking into CyberKnife and would really like to read what you have been reading.  I read about surgery today from the Michigan Ear Institute and it scared the socks off of me, and surgery is about all that they do. 
Diagnosed 3/29/14 Right Side AN 8mm x 3mm x 4mm
GK UPMC 6/13/14
MRI 12/03/2014

blacksheep

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Re: I've just been told I have an acoustic neuroma
« Reply #13 on: April 28, 2014, 04:02:09 am »
Hi Kat From Indiana,

Please don't be put of by my comment. It was a comment about treatment in general so not related soley to radiotherapy.

I'm sure you will have read lots on the web about the treatment options available, just as I have done, and read about the pro's and cons for each type of treatment and I'm sure that there are lots of people on this forum who can share there experiences of Cyberknife with you.

I have already been left disabled by cancer and am therefore frightened that any further medical treament may add to the problems I already have to live with. Unfortunately, as with so many things in life, we cannot predict exactly what will happen but we can at least find out what other peoples experiences have been.

Take care
« Last Edit: April 28, 2014, 07:15:04 am by blacksheep »

Cheryl R

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Re: I've just been told I have an acoustic neuroma
« Reply #14 on: April 28, 2014, 07:55:12 am »
Kat, Every facility who does surgery has to tell you of any possible complication or what one may have post op.   It does sound scary.   But one's chances are not always big and all depends on the tumor location and size.   What damage it has done to the nerves and also the odd chance there is unseen things inside not seen on the MRI.           Most people do fine and many issues post op are temporary or one adjusts better than you think you might.      Having a surgeon with lots of AN experience is a very big factor also.      Your decision on what kind of treatment you decide on depends if you want it removed or can live with it still left in there.     Many of the people on the forum leave once they have had treatment and recover and are back to normal life.     Yes there can be living with the single sided deafness or some balance issues under certain conditions but we do adjust better than we think we might.       There are ways to help the hearing and facial issues if they occur.     Most facial issues are temporary unless the nerve is severed.          I wish you well and hope we can be of help.       I think I mentioned before of the Univ of Iowa also being a good Midwest location for surgery.                           Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

 


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