Author Topic: Newly diagnosed, nervous and 22 years old - what are my options  (Read 5244 times)

lyss0324

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Newly diagnosed, nervous and 22 years old - what are my options
« on: September 15, 2014, 12:51:04 pm »
Hi everyone,

I was just recently diagnosed with a small 2.1 mm AN on the right side. I am twenty-two years old. My only symptom as of yet is vertigo, no hearing loss (audiogram was totally normal) and no ringing in the ears. Do you think surgery or gamma knife are smart and viable options to take? The first doctor that I saw will not operate on me - he will only proceed with watch & wait. I am mostly concerned about the risk of losing hearing. My dizziness is severe at times. Any thoughts/experiences that you could share, especially as a younger patient, would be much appreciated.

Thanks!
Alyssa

keithmac

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Re: Newly diagnosed, nervous and 22 years old - what are my options
« Reply #1 on: September 16, 2014, 04:33:10 am »
Hi everyone,

I was just recently diagnosed with a small 2.1 mm AN on the right side. I am twenty-two years old. My only symptom as of yet is vertigo, no hearing loss (audiogram was totally normal) and no ringing in the ears. Do you think surgery or gamma knife are smart and viable options to take? The first doctor that I saw will not operate on me - he will only proceed with watch & wait. I am mostly concerned about the risk of losing hearing. My dizziness is severe at times. Any thoughts/experiences that you could share, especially as a younger patient, would be much appreciated.

Thanks!
Alyssa

I was 62 when my first symptoms appeared in AZ during the winter of 2008/2009  - I realise you're very much younger.  My balance was distinctly odd and I couldn't run or even walk in a straight line without much difficulty and concentration.

 A short time later tinnitus developed and whereas that has remained with me, my balance issues have improved to the extent that they scarcely have any effect now.  But it did take a few months for my system to adapt to the worst of the balance issues and for a year or two I did still experience some problems.  I hope your system adapts to the dizziness before too long but you may have to try to be patient.  I've been on W&W since diagnosis in summer 2013 - it's still early days.

 I'm not surprised W&W has been recommended for you.  I'm only a layperson but from what I've learned radiosurgery isn't favored for young adults because there's no data about any longer-term effect from radiation of that sort.  Sadly if surgery's needed it often appears to lead to total hearing loss and for that reason I'd be reluctant to go for it until there's no alternative.  I expect you'll need 6 monthly MRI scans to monitor the size and that will determine what happens next.

I realise that the experiences of someone of a similar age are more likely to be of most help and I hope there are members here who will be able to share their experiences with you - good luck!

lyss0324

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Re: Newly diagnosed, nervous and 22 years old - what are my options
« Reply #2 on: September 16, 2014, 07:10:05 am »
Thank you so much for your response. It definitely makes me feel better that you've had success with watch & wait. I guess I never imagined the difficult part would be getting the AN out. It's comforting to know that your balance problems worked themselves out - that's what the doctor seemed to feel would happen over time as well. Thank you again for your kind words.

raji83

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Re: Newly diagnosed, nervous and 22 years old - what are my options
« Reply #3 on: September 16, 2014, 12:48:40 pm »
Hi Alyssa,
 I am also new patient. I am 30 year old and my AN is 12 mm and i am going for my surgery in next month. i had severe hearing loss in my right ear but no vertigo or anything. If i were at your place i would not go for W and W because i am so young to put myself in this W and W because i know eventually it gonna grow and i will have more problems. I have all great docs from east and west coast they all said W and W is not a very impressive option for younger patients. So i will suggest just go for surgery and your AN is so tiny and surgery will be less complicated and you will get rid of this. Please let me know if you have more questions about anything related to AN. I will be so happy to help you.

Thanks

keithmac

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Re: Newly diagnosed, nervous and 22 years old - what are my options
« Reply #4 on: September 16, 2014, 01:18:40 pm »
Hi Alyssa,
 I am also new patient. I am 30 year old and my AN is 12 mm and i am going for my surgery in next month. i had severe hearing loss in my right ear but no vertigo or anything. If i were at your place i would not go for W and W because i am so young to put myself in this W and W because i know eventually it gonna grow and i will have more problems. I have all great docs from east and west coast they all said W and W is not a very impressive option for younger patients. So i will suggest just go for surgery and your AN is so tiny and surgery will be less complicated and you will get rid of this. Please let me know if you have more questions about anything related to AN. I will be so happy to help you.

Thanks

Without detailed knowledge of the sufferer's condition - and relevant medical qualifications, expertise and experience to evaluate it - you really shouldn't be suggesting surgery. 

The small size of Alyssa's tumor has relevance and it may not grow anyway but even if it does grow it may be very slowly and without any significant impact on her health or hearing for some time.  Surgery is hardly a small issue and carries risks.

Watchful waiting and regular MRI scans will determine if it's growing significantly and sufficiently to warrant intervention but experts are the ones to determine that and make informed recommendations based on up-to-date information.

ANGuy

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Re: Newly diagnosed, nervous and 22 years old - what are my options
« Reply #5 on: September 16, 2014, 02:53:03 pm »

Without detailed knowledge of the sufferer's condition - and relevant medical qualifications, expertise and experience to evaluate it - you really shouldn't be suggesting surgery. 

The small size of Alyssa's tumor has relevance and it may not grow anyway but even if it does grow it may be very slowly and without any significant impact on her health or hearing for some time.  Surgery is hardly a small issue and carries risks.

Watchful waiting and regular MRI scans will determine if it's growing significantly and sufficiently to warrant intervention but experts are the ones to determine that and make informed recommendations based on up-to-date information.

I agree, do not rush into anything.  Surgeons do surgery and are often too quick to get people on the table.  Some people need immediate action, some can wait months at a minimum while they learn, to even decades when they find that they are a lucky one who never had further growth.


"You're young, get it out now and you won't have to worry about it for the rest of your life" sounds great.  It's what we all want to hear, but it is often inaccurate or over-simplistic.

Take your time figuring this all out.  None of it is simple and black and white.
Diagnosed June 2014 1cm AN at 47 years of age.  Had fluctuating symptoms since 2006.    6 mos MRI (Dec 2014) showed no growth, MRI  in July 2015 showed no growth.  MRI Jan 2016 showed no growth.  MRI Aug 2016 showed no growth.  I'm gonna ride the WW train as long as I can.

lyss0324

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Re: Newly diagnosed, nervous and 22 years old - what are my options
« Reply #6 on: September 17, 2014, 10:08:26 am »
Hi all,

Again, thank you for your kind words and useful advice.

I am seeing two more surgeons next week (one at NYU, one at Winthrop) for different opinions. Like somebody mentioned, it would be great to just get it out and be done with it, but the complications of the surgery are holding me back. The previous surgeon (at Columbia in NYC) I saw said with either surgery or gamma knife, there is a 25% chance of total, permanent hearing loss. That's a scary number especially considering my hearing is 100% fine as of now. Ultimately, I'm torn between getting rid of this and risking the complications, or waiting as the surgeon suggested, and coping with dizziness that is certainly detrimental already to my QOL.

In the meantime, does anyone know of any coping mechanisms to alleviate the dizziness caused by the AN? I haven't seen/heard any concrete suggestions yet.

Thank you again for all of your suggestions and advice; it's unbelievably comforting to have found this support system.

ANGuy

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Re: Newly diagnosed, nervous and 22 years old - what are my options
« Reply #7 on: September 17, 2014, 08:26:42 pm »
This is not medical advice, it is what works fairly well for ME.  But, it's pretty benign stuff that is considered conventional.  Consider my suggestions, and then run them by your Drs. to see if you should try them.

Dizziness is mitigated by vestibular suppressants.  Anti-vert is a Rx for dizziness that works well.  It takes a couple of hours to start working.  It is available over the counter (I believe) as "Dramamine Less Drowsy".  It will likely make you a bit drowsy, so don't take it if you are planning on operating a band saw.  Anti-vert is an antihistamine.  First generation antihistamnines, the ones that DO make you drowsy, are vestibular suppressants.  Benedryl is another one that works well, though it doesn't occur to most people that it can be used for that.  Most days I have no dizziness issues.  Some days, I feel just a tiny bit of it and I take one 25mg of Benedryl.  This is half the dose used for allergies, so it's not like this is some kind of radical drug binge.  Anyway, one 25mg OTC Benedry works for most of the mild symptoms.

On a rare bad day, I need the anti-vert.  Since it takes a while to work, I need to take Zophran to keep from vomiting.  The Zophran is a friggin miracle.  It's like an instant "off" switch for vomiting.

Diazepam and Lorazepam also work, but no better than anti-vert for me and are a "heavier" drug in my opinion.  I doubt you would develop a dependency of either if you take one here and there, and they are great at relieving the anxiety that goes with all of this, but I just feel better about taking an antihistamine than a "drug" like valium.

The anxiety that goes along with all of this WILL get better in time.  An occasional valium isn't the worst thing a person could do to ease the road we are on and I'm not judging anyone who takes them here and there.  Heck, I take one every now and then when I'm dizzy and my neck is like a vice from dealing with all of this, it's just that benzodiazepiens are not a long term solution, so watch out for Drs that might over-prescribe them.
Diagnosed June 2014 1cm AN at 47 years of age.  Had fluctuating symptoms since 2006.    6 mos MRI (Dec 2014) showed no growth, MRI  in July 2015 showed no growth.  MRI Jan 2016 showed no growth.  MRI Aug 2016 showed no growth.  I'm gonna ride the WW train as long as I can.