Author Topic: Hi all - another one joins your club  (Read 10129 times)

Monie

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Hi all - another one joins your club
« on: December 15, 2006, 03:01:00 am »
Hi everyone, and thank you for being there in my my darkest hours...I found this site whilst on the mission for info on AN after I was diagnosed last month. My name is Monie and I live in Queensland, Australia  :) I am 35 years old and mum to a beautiful six year old girl and gorgeous two year old boy. I have a wonderful husband and great parents and they are all doing their very best to help get through this. YOU GUYS have helped me so much, both with your candour and humour and also with the very obvious kindness in your hearts. I know I have not met any of you but feel that I have a special connection (albeit a particularly nasty one in terms of the diagnosis) with you all. I have spent hours and hours reading your posts, empathizing with your plight, celebrating your successes and wishing that we were ALL talking about something else!!!
I have SO SO SO many questions but I will start off small and work through them - I would appreciate your replies and any advice you can give.
I have been to see two specialists (one in Sydney which is about 1000 kms away). I have a 1cmx5mmx7mm intracanilcular AN right side. It is only inside the canal. The specialist that I saw in Sydney (Prof Fagan) suggests that I should wait and watch and when the time comes that I really have to do something I should have trans-lab. I am wondering if this is because it is confined to the canal (and is filling it completely) that there would be no way to save the hearing nerve??? Does anyone know anything about this? I didn't think to ask that question when I saw him as I had so much else to ask. Also, for those of you that have had trans-lab, what is the hearing situation (i.e. does being deaf in one ear feel the same as putting an earplug in one ear (which creates an echo sound in terms of your own voice and inhibits comprehension of the sound coming into the good ear) and also what does being deaf in one ear do in terms of the tinnitus in that ear? At present I can kind of mask the tinnitus a bit because other sound can get in there (I have lost about 40% hearing)
I have SO much to ask but will slow down and ask a bit at a time if that's OK with you all :)
You guys have 'SAVED' my sanity...I was so ALONE and completely terrified...so I thank you all again for being there and being the strong, resilient, wonderful people that you are.
Look forward to hearing from you all :)
Diagnosed Nov 06
1cmx7mmx5mm right side AN
Unsure whether to have surgery or join the wait and watchers???
Have tinnitus, hearing loss, dizziness.
35yo, married to a wonderful man, two beautiful small children
Need to know it will be OK
Live in Queensland, Australia

Sam

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Re: Hi all - another one joins your club
« Reply #1 on: December 15, 2006, 03:36:42 am »
Monie,
Your AN is still considered as small. where you say 1cmX5mmX7mm, the 1cm is equal to 10mm. so having that said your tumor is 10mm X 5mm X 7mm which is small. you are 35 with approx. 40% hearing loss, you are a candidate for Radiosurgery(Gammaknife/ Cyberknife, etc.) My tumor is in the ear canal also, My Doctor explained that the further away from the brain the better. I have 97% word discrimination in my AN ear, and only was candidate for Middle Fossa approach if I chose surgery which has about 70% chance of hearing preservation. If you go with the trans-lab you will more than likely lose total hearing in the AN ear.
If you go with radiosurgery you have somewhere between 50-80% chance for hearing preservation, depending on what choice you make as far as the treatment instrument. for Gammaknife 50-70% , and for Cyberknife 70-80%.  Do a web search on the diffrent radiosurgery instruments to get exact info. I do not want to mislead you, but I do believe I am right about the percentages given. I am for certain about Gammaknife, that is what I had. But the Gammaknife is suppose to be the most accurate instrument, but can only treat cranial leasions,tumors benign and malignant, but gammaknife is limited to the cranial area only, where cyberknife can be used in diffrent areas on the body.
Diagnosed 4mm X 7mm Acoustic Neuroma Left side 09/23/2006
Gammaknife Healthsouth/Highland Medical Center 12/12/2006
                         UAB Gammaknife

Lorenzo

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Re: Hi all - another one joins your club
« Reply #2 on: December 15, 2006, 03:51:42 am »
Hi Monie,

Sorry you had to joins us, but glad you did at the same time, if you know waht I mean :) Which part of Australia is Queensland? I can look it up on an atlas of course. I see, Brisbane and north of there. Far from sydney. Not at all where I thought it was... Well, I do live on the other side of the world, around and up (or down, depending where one stands). Ok,  never mind.  :)

Did any of the  specialists talk about radiosurgery? If not it might be worth while talking to a radiosurgery specialist too.
Can you ask him why he suggested translab in particular? I presume because translab is the only way to get to the AN, but I only speculating.
I still haev some hearing, so I can't t ell you what it's like to be deaf in one ear.
As for the tinnitus, it's unlikely that it will go away. Tinnitus is not generated by the ear, but by the brain. So, even you had no functioning hearing nerve you would still hear it. The 'good' news is, that because it is generated by the brain, you can stilll mask it off with other sounds (like white noise, shower noises, etc. depending on the type of 'sound' you hear) through your remaining good ear.
I had CyberKnife and the figures quoted are more or less correct I think. Althought talking to various radiosurgeons, they seem to quote CyberKnife as being more accurate. It also has oother advantages over Gamma Knife which they point out. A good resource for CyberKnife (or GK indirectly) is: www.cyberknifesupport.org/forum where there are doctors answering questions relating to radiosurgery.

Sorry I can't answer your translab question, I'm sure that's the most pressing one for you right now. But remember, yours is a small AN and it is generally slow growing, so you have time to find out a lot of information and do your research.

All the best,

Lorenzo
« Last Edit: December 15, 2006, 04:03:33 am by Lorenzo »

nancyann

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Re: Hi all - another one joins your club
« Reply #3 on: December 15, 2006, 05:34:46 am »
Hi Monie,

 It's funny, I'm so glad, yet so sorry you're here.  You are at the right place.  Thank God you have support, family.   
I totally agree with Sam & Lorenzo.    TAKE YOUR TIME WITH YOUR DECISION.
Definitely look into radiosurgery.    After all I've read, I do believe the less invasive the better.
Unfortunately for me I didn't know about this site, heck, I didn't even have a computer yet when I was diagnosed.
Found out in May, had surgery in June without even checking radiosurgery.  I thought, just get it out. Well, can't second geuss, but
you have a 'small' AN, my best advice is, with your supports, really DO THE RESEARCH, look at all your possibilities.

Wishing you all the best Monie, Nancy
PS  Oh, your tumor is only in the canal (don't mean ONLY, it's bad enough !!, but, yes, do research, hope that means it isn't on the facial nerve, etc.).
« Last Edit: December 15, 2006, 07:03:40 am by nancyann »
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
2.4 Gm. Platinum chain 2017
right facial paralysis

Dealy

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Re: Hi all - another one joins your club
« Reply #4 on: December 15, 2006, 07:58:36 am »
Hi Monie from the States. Sorry you had to join the club on ANer's. However I will give you my input. I had surgery back in 1988 for a 1.5Cm. This left me deaf in the Left ear-plus they took my balance nerve. Yours is small so surgery-depending on where it is located may take your hearing completely or retain what you have left-radiosurgery would do the same. I adjusted to deafness over time-you cannot hear in Stereo anymore-still have ringing in deaf ear like little sliegh bells-this never went away-but you tend to block it out after awhile. Also you cannot orient where sounds are coming from. Most of the time though if I did not tell people they never knew I was deaf in one ear. Now I am facing this again-because I am an NF2-so I have a AN in my right ear that is 2.7CM. I had FSR this last June-25 sessions to retain my hearing-which at the beginning-found out because my face went numb in 2005-I had 100% hearing. Doubt if that is that way now because most speech is distorted-but I still can hear. With size of my Tumor-Surgery would of left be totally deaf.So what are your options. Of course we do not know what is available here in the States in Aussie land. Like people here have stated you can wait and watch. 1% actually diminish on their own but I have never read of a person where that actually happened. Some remain stablr over years and never grow. Decisions right. Now you need to check all your options-do you want this out of your head now-with possibility of hearing loss and take radiosurgery-non-invasive mode. You do have time to decide-just DO NOT jump to a decision without a full investigation of all your options. Good luck-Monie and keep us posted on this site of your progress and decisions. Happy Holiday from the States. Ron

krbonner

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Re: Hi all - another one joins your club
« Reply #5 on: December 15, 2006, 08:46:00 am »
Also, for those of you that have had trans-lab, what is the hearing situation (i.e. does being deaf in one ear feel the same as putting an earplug in one ear (which creates an echo sound in terms of your own voice and inhibits comprehension of the sound coming into the good ear) and also what does being deaf in one ear do in terms of the tinnitus in that ear? At present I can kind of mask the tinnitus a bit because other sound can get in there (I have lost about 40% hearing)

Welcome, I'm glad you found this group.  It's scary getting this diagnosis with young kids, isn't it?  My two boys were 4 months and 3 years when I was diagnosed.  At my first MRI, my AN was 1.8cm and after doing a lot of research and talking to experts I decided to join the watch-and-wait camp for a while.  Unfortunately, mine grew quickly and a year later was pressing on my brainstem, so I had translab three months ago.  But I'm told it's pretty rare for ANs to grow like mine did.

Anyhoo...

My first symptom was loss of hearing on one side.  It felt and sounded like I had an ear infection and my ear was filled with fluid.  I had about 30% word recognition then, but it honestly wasn't useful hearing.  By the time I had surgery, I had 12% word recongnition, but essentially couldn't hear a thing.  So there wasn't a big change for me post-op.  I've now had 2 years to adjust to the hearing loss (since Nov 2004), and I (and most others) don't notice it 90% of the time.  I have a harder time in noisy, busy places (loud restaurants and parties), but it really hasn't impacted my life at all.  I make sure to position myself (when possible) so my good ear is towards companions and that mostly takes care of it (keep in mind that I do have a small high frequency loss in my good ear, too).  The tinnitus didn't change for me post-op, but I don't notice it unless I'm in a very quiet environment.  In general, it still sounds like my ear is just blocked with fluid - it doesn't feel dead or anything like that.

Hopefully you'll get other stories, too, since the outcomes to surgery or other treatment can be so individual.  Take time to do the research, including whether or not radiation is a viable option for you in Australia.  And good luck!  We're here for you.

Katie
diagnosed June 2005
2.3cmx1.6cmx1.4cm left AN
translab Sept 13, 2006; Drs. McKenna and Barker in MA (MEEI/MGH)

Derek

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Re: Hi all - another one joins your club
« Reply #6 on: December 15, 2006, 08:52:50 am »
Hi Monie...

Sorry that you had one of these 'nasties' diagnosed but so very pleased that you managed to find this invaluable site where you will get loads of friendly advice from those at the 'sharp end' and which will assist greatly with your ultimate decision making process. You have made an excellent start having found us and having already obtained professional opinions from two sources. I just wondered what symptoms you were experiencing which led you to being diagnosed?

The 'good' news for you is that your AN is thankfully, relatively small and having a very slow rate of growth, you have plenty of time to carry out lots of research to enable you to assess just what is the best ultimate treatment option suited to you based upon an informed judgement.

You will see from my signature entry that I have been in the 'wait and watch' mode for almost 5 years and with regular MRI scans and acting on professional medical guidance it is obviously the safest option. Microsurgery by its very invasive nature is obviously the treatment option that carries the most risks whilst radiosurgery has many advantages albeit the AN remains within the skull but hopefully 'nuked'! You should also be aware at an early stage that microsurgical removal does not always guarantee that regrowth will not occur notwithstanding that it is a rare occurrence.

With regard to the aspect of single-sided deafness, I have had total hearing loss on my affected side for almost 5 years and at diagnosis I was also experiencing balance problems. My unaffected balance nerve has totally compensated for the imbalance and I am now hardly ever aware of my part hearing loss...just a case of Mother Nature taking care of things!

Very best of luck on your AN journey and remember we are all here to assist you along the way.

In the interim I hope you and your family enjoy a wonderful Christmas.

Best Regards

Derek

Residing UK. In 'watch & wait' since diagnosis in March 2002 with right side AN. Initially sized at 2.5cm and now self reduced to 1.3cm.
All symptoms have abated except impaired hearing on affected side which is not a problem for me.

Obita

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Re: Hi all - another one joins your club
« Reply #7 on: December 15, 2006, 08:21:07 pm »
Dear Monie:

I have a dear friend that lives in Dolphin Heads, Mackay....

I am so glad you came on.  This is the best bunch of people on earth.  There is something special about ANers and their families.  I think it is because ANs are rare and the symptoms are unexplainable to anyone that does not have one or has not been affected by one.

Hopefully you can watch your AN for a while or radiate it if it grows. 

I do have tinnitus but have learned to live with it as I have learned to live with single sided deafness.  The deafness is only a problem in loud situations. 

Good luck and welcome to the family, Kathy
Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

Monie

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Re: Hi all - another one joins your club
« Reply #8 on: December 16, 2006, 02:43:47 am »
HI everyone and THANK YOU ALL SO MUCH for your replies and kind thoughts! It certainly helps enormously to know that that there are people in the world (no matter how far away) that truly understand what you are going through. I no longer feel so alone and eargerly jump on the net to check this board and see how all are doing and what's happening next - I pray for all of you and send you all the strength I have (it may wane a little at times!!!) as I know you are sending me:) I am trying so hard to get on top of the way I feel and I know it is so much pressure on my husband and especially my mum who are both my rocks...I am so frightened that I am putting too much pressure on them with my neediness...I am sure that the day will come when I wake up one morning and feel back to being me, but at the moment 'me' has been lost in the dark cloud that this thing has brought over my life (and the life of those I love). I know it could be so much worse (my father-in-law died from a brain tumour last year) and I try hard to remind myself in those times of real lows that I am incredibly lucky to have choices and that it will all work out one day.
I have a few more questions (probably more that a few...) so here goes:
* What were all your balance issues pre surgery?
* How many of you had a tumour confined to the auditory canal?
* How many were given a choice between trans-lad and retro surgery and if you chose trans-lab, why?
* How many of you have headaches post surgery and on a scale of 1 - 10 (10 being unbearable) how do you rate your headaches now?
* How many of you have a BAHA and what positive effects has it had on your situation?
* If you had surgery, how many of you (given the choice of waiting and watching) would now wish they had waited?
I know these questions are pretty brutal but I guess if I can't ask you guys, who can I ask???

By the way, if any of you guys decide to come to OZ for a holiday, my home is open :)
In reply to where Brisbane is, I am about 1000km north of Sydney (NSW) on the east coast. I live on a small island (Bribie Island) and have been here for around 10 years. I am a music teacher and event manager.

Love and good wishes to you all - can't wait to hear from you soon!
Cheers,
Monie x
Diagnosed Nov 06
1cmx7mmx5mm right side AN
Unsure whether to have surgery or join the wait and watchers???
Have tinnitus, hearing loss, dizziness.
35yo, married to a wonderful man, two beautiful small children
Need to know it will be OK
Live in Queensland, Australia

Lorenzo

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Re: Hi all - another one joins your club
« Reply #9 on: December 16, 2006, 03:24:06 am »
HI Monie,

I had radosurgery so I can't answer most of your questions. Others will. My balance prior to treatment was ok. I had balance problems before, but I had compensated for it alreay by then. Still the same now post treatment, except in the dark or uneven ground. Then the visual balance system does not work as well and I walk a little off.

I now this must be a very frightening time for you, especially with your father in law's death last year. None of this is easy, ever. All we can do is learn to deal with it our own way. Finding out as much as you can is the best way to do that. So, ask away! We all know what it was like at that stage and what we all went through. Rely on those near you that give you support, and they too will find strength from whatever information you will get.

All the best :)

Lorenzo

Monie

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Re: Hi all - another one joins your club
« Reply #10 on: December 16, 2006, 03:44:45 am »
Hey Lorenzo,
why did you choose radiosurgery? What has been the outcome? What will be next? May I ask how old you are and what your life is...married? kids? working? etc etc??? I know I may seem very 'nosy' but need, need, need as much info and insight as is humanly possible to gain when I can't meet you in person and chat over coffee  :)
Cheers,
Monie
Diagnosed Nov 06
1cmx7mmx5mm right side AN
Unsure whether to have surgery or join the wait and watchers???
Have tinnitus, hearing loss, dizziness.
35yo, married to a wonderful man, two beautiful small children
Need to know it will be OK
Live in Queensland, Australia

Lorenzo

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Re: Hi all - another one joins your club
« Reply #11 on: December 16, 2006, 04:17:30 am »
HI again Monie,

Not nosy at all. I don't mind. I'm 46, married (partner of 22 years), no kids, working as self-employed graphic designer and lecturing graphic design too. Been living here since '84.

When I was diagnosed with my AN I had two choices, wait and see, or surgery. Radiosurgery is not available in this country for benign tumours, for whatever reason. So I picked wait and see as suggested by my then neurosurgeon. His idea was to postpone such a major surgery until it was really ncessary. Good thinking I thought at the time. I immediately started looking into this AN, as I couldn't get much information from the medical profession at all. I soon discovered other treatment options. I have to say at that stage I was still more interested in surgery, the idea of getting my head 'nuked' wasn't something I really felt comfortable with.

The more I looked into things and information I got, the clearer things became, and the more difficult things became too. Making a choice is one of the hardest aspects of this whole saga. Anyway, as I went along past the first six months after diagnosis, I started having some more acute symptoms and new ones too, loss of taste, louder tinnitus, and numbeness in my face. At this stage I thought somethig was happening. I didn't get much satisfaction form my docs then, so I started looking around for other options. By this stage I felt a lot more comfortable with the radiosurgical route. Mainly because of the lessened risks, and also because I didn't really like the idea of sombody rooting aroudn my brain with metal tools. Sorry, sounds crude I know, but that was my frame of mind at the time. Anyway, I had lost all faith in my medical team here, and as it's the only one in the country performing that surgery, I decided it was time to take my medical matters in my own hands. So, I contacted various radiosurgical facilities in the US, sent over my files (what I could get hold of) to Stanford in California for CK assessment. Got accepted and I made the arrangements.

Dec 04 was the treatment time. Went over, got treated, had a long holiday, came back and next phase started, recovery. I worked from the time I came back, but had to take a big step back from it all. I reduced my college work to purely lecturing, no meetings no admin. Cognitive problems were showing themselves big time. My own freelance work suffered immensly during all this, loosing most of my clients. (not that I was too sorry to see some of them go  :) ) Slowly recovery progressed and things improved. At around the 10 month mark suddenly things took a dramatic turn for the better, with energy levels coming back to near 'normal'. I went back to my full college work duties and have been building up my freelance work too since then. Now, I'm two years post treatment. Feeling good, latest MRI shows tumour is continuing to die and it's even started shrinking. A few pains on and off from the shrinking process or from the scar tissue forming, but nothing much else now. Huge fatigue has more or less vanished completely, unless I do too much. Too much being A LOT these days.

I have a fairly quiet life, having opted for keeping my stress levels to a minimum and not having kids. Slow is my motto, and enjoy life as much as possible. Lots of travelling and seeing things. I'm lucky, I have the time to do all that, and a partner that also works in education, so we both have the same holidays.

By the way, if you want to read more about it all, look at my blog too, it started at the time of diagnosis.

Sorry for any typos in the above, haven't quite managed to fix the problem of dyslexic typing!

Send me an e-mail if you want to discuss more or want to have a chat. Or jsut ask me here, whichever suits you better. I'm also on MSN.

Hope this helps a little. Ciao, Lorenzo
« Last Edit: December 16, 2006, 04:59:43 am by Lorenzo »

nancyann

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Re: Hi all - another one joins your club
« Reply #12 on: December 16, 2006, 05:57:29 am »
Hi Monie

I can help with some of your questions:

I had a 'full' 2 cm AN,  no balance issues prior to surgery
My AN was pinching on brainstem, don't think it was in the ear canal (or maybe a little ?)
Headaches for first about 3 weeks post op were REALLY BAD; now, on scale of 1-10, 1 being least painful, I'm at a 1(what IS a 10 is the stuffy head feeling )
Definitely WISH I WOULD HAVE WAITED, WISH I HAD A COMPUTER AT THE TIME so I could do what YOU'RE DOING  (I'm sooo glad you found this site Monie)

The questions aren't brutal at all.
Take care Monie, Nancy
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
2.4 Gm. Platinum chain 2017
right facial paralysis

Jim Scott

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Re: Hi all - another one joins your club
« Reply #13 on: December 16, 2006, 02:10:10 pm »
Not sure how helpful I can be here but I'll offer what information I have to give:

* What were all your balance issues pre surgery?

Could not walk 'heel and toe' at all.  Swayed or lurched when walking.  Could not walk a straight line. 

* How many of you had a tumour confined to the auditory canal?

Not me.

* How many were given a choice between trans-lad and retro surgery and if you chose trans-lab, why?

No choice given.  With my large tumor (4.5 cm) my neurosurgeon said retosigmoid was his best shot at reaching most of it.  I had no desire to debate this. 
 
* How many of you have headaches post surgery and on a scale of 1 - 10 (10 being unbearable) how do you rate your headaches now?

Headaches now would rate 0.  Pre-surgery, I only had a few mild headaches.  More 'shooting pains' than anything else.

* How many of you have a BAHA and what positive effects has it had on your situation?

No BAHA.  Possibly in the future.  I've read good things about this device.

* If you had surgery, how many of you (given the choice of waiting and watching) would now wish they had waited?

Not applicable to my case.  I had no option other than immediate surgery.  My tumor was pressing on my brainstem and my life was in jeopardy.


Jim[/color]




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.

Jeanlea

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Re: Hi all - another one joins your club
« Reply #14 on: December 16, 2006, 04:23:17 pm »
I didn't have many treatment options, but I can share what I did do.  It's good that you can gather information.  With a small tumor you have the time to do so.

* What were all your balance issues pre surgery?

I had no noticeable balance problems pre surgery.  In hindsight I may have had very small problems, but paid no attention to them.

* How many of you had a tumour confined to the auditory canal?

Mine was growing out of the canal and pressing against my brainstem.

* How many were given a choice between trans-lad and retro surgery and if you chose trans-lab, why?

I  was not given a choice since my tumor was 3.5 cm (turned out to be larger).  My doctor said I would not be able to do the radiation treatment.  He did both.

* How many of you have headaches post surgery and on a scale of 1 - 10 (10 being unbearable) how do you rate your headaches now?

I had no headaches pre surgery and none post-surgery.

* How many of you have a BAHA and what positive effects has it had on your situation?

I don't have a BAHA, but I am looking into a TransEar hearing aid.  (But it's only available in the US so far.)

* If you had surgery, how many of you (given the choice of waiting and watching) would now wish they had waited?

Wish I would have had a choice, but given my symptoms I had to have surgery fairly quickly.  It was only a month after my diagnosis.

(Thanks Jim.  I borrowed your bulleted questions.)

Jean

translab on 3.5+ cm tumor
September 6, 2005
Drs. Friedland and Meyer
Milwaukee, WI
left-side facial paralysis and numbness
TransEar for SSD