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Author Topic: MRI Number 4  (Read 8536 times)

DHJ

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MRI Number 4
« on: April 09, 2010, 10:08:43 am »
Hi Fellow ANs     Just heard from Dr. McKennas nurse today. Wednesdays MRI shows no Growth (Yay) so I continue to WW my 2.4cm by 2.0 cm AN. My tumor seems to be larger than most of my fellow WW but Dr. McKenna does not seem alarmed. I am 55 with hearing loss and minor balance issues and continue to work and play.
                     Is  there anyone else in the WW group with a AN tihs size. IT has increased approx 4mm since IT was found 2.5 yrs ago. When do I treat IT.     Peace Dave
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3yr wait and watch on left sided 2.9cm AN is over surgery 11/4/2011 Mckenna/Barker at MGH one year MRI 11/12/2012 all clear

Brendalu

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Re: MRI Number 4
« Reply #1 on: April 09, 2010, 10:19:32 am »
Everyone is different, but the smaller they are when they are removed the less problems you have....so I have been told.  Mine was 3.5 cm and I wish it had been found and removed when it was smaller.  I would probably get a second opinion on what course to take and really weigh your options.
Brenda
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Brenda Oberholtzer
AN surgery 7/28/05
Peyman Pakzaban, NS
Chester Strunk, ENT

CHD63

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Re: MRI Number 4
« Reply #2 on: April 09, 2010, 10:21:07 am »
Although I am not a W&Wer, my thinking would be that when your symptoms become a significant issue, it would be time to act.  At 2.4cm you are getting closer to the cut-off for options of radiation (generally in the 3cm range) so that would be something to consider, as well ..... if you are thinking about radiation.

Congratulations on at least a stable tumor now ...... it could stay that way a long time.

Best wishes.  Clarice
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Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Derek

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Re: MRI Number 4
« Reply #3 on: April 09, 2010, 04:48:26 pm »
Hi Dave..

Re my own personal experience...I was diagnosed at age 58 with a 2.5cm AN over 8 years ago since when I have been in W & W mode and my MRI scan in 2009 indicated the size of the AN had reduced to 1.5cm over the ensuing years. I am presently awaiting the result of my most recent scan and I remain optimistic.

Having due regard to the fact that your present symptoms are limited to diminished hearing on the affected side and minor balance issues, my advice would be to monitor the situation via regular MRI scans and if there is no further increase in the size and no escalation of your symptoms then, should your consultant be in agreeance, consider continuing in W & W if indeed that is what you would wish to do.

Regards

Derek
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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.

Lizard

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Re: MRI Number 4
« Reply #4 on: April 09, 2010, 05:29:05 pm »
I agree with Clarice and Derek...might not be a bad idea to get a second opinion and with the MRI proof over the last 2.5 yrs they should be able to give you an honest opinion.  Again, if your symptoms are getting in the way of  your life it might be time, but it sounds like you are still able to do your activities...
Take Care,
Liz
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Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

Sheryl

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Re: MRI Number 4
« Reply #5 on: April 11, 2010, 01:30:58 pm »
Hi Dave - I see from your profile that we aren't too far from each other - we lived on Cape Cod for 26 years and now are snowbirds returning to the Cape for the summer after spending the winter in Florida (not too far from the Red Sox spring training camp).

I've been a W&W patient for 8-1/2 years with a 9th cranial nerve schwannoma - sort of like an acoustic neuroma but on the 9th nerve rather than the 8th.  My first MRI was in 2001 after a bad headache which turned out to be blood pressure related but instead I heard - "you've got a brain tumor"  :o  It first measured 9 mm but I was told on second opinion by a neuroradiologist that it was a tad larger.  During the past almost 9 years, it has changed by only 5 mm (up to 14 mm) with no symptoms although lately I have been a little more lightheaded and dizzy but it's a bad allergy year and I'm hoping that's my situation. 

I would go more with my symptoms than the size of the tumor and have already decided if/when anything needs to be done, that I will have radiosurgery - probably Cyberknife at the Beth Israel. 

Good luck and keep us posted.
Sheryl
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9th cranial nerve schwannoma - like an acoustic neuroma on another nerve. Have recently been told it could be acoustic neuroma. Only 7 mm of growth in 18 years. With no symptoms. Continuing W&W

rm516

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Re: MRI Number 4
« Reply #6 on: April 11, 2010, 03:41:24 pm »
I have 2.7 cm AN and have been on W&W for 1 year. No growth on 3 MRI's , no symptoms except decreased hearing (still > 90 % good).
New hearing test shows same as year ago except one point less on High frequency @4000 mega hertz.
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Diagnosed AN in 2008,  3.2 cm CPA round, retrosigmoid surgery performed by Dr. M. Sisti, Columbia Pres.Hospital  NY, in Jan 2013, After surgery no major issues, Hearing retained (>50% ). However, 2 YRs post surgery MRI shows a further decrease in the size of residual AN! No GK or any therapy needed.

DHJ

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Any suggestions
« Reply #7 on: April 11, 2010, 05:29:12 pm »
Thanks for sharing you AN experiences. It is comforting to know that I am not alone waiting on a 2.4 AN. This week I have a appointment with Dr. Leoffler at MGH to discuss Proton Beam treatment and plan to explore Cyber Knife.Any suggestions? You would think that after 2.5 yrs I might have a plan but life goes on and I keep waiting and watching.Not such a bad thing.I guess.     Peace Dave
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3yr wait and watch on left sided 2.9cm AN is over surgery 11/4/2011 Mckenna/Barker at MGH one year MRI 11/12/2012 all clear

nanramone

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Re: MRI Number 4
« Reply #8 on: April 12, 2010, 02:52:51 am »
Wow - this is all still so new to me. I have only seen one surgeon and was told I am definitely not a candidate for watch and wait....the tumor is not large, but is pushing into my brainstem.
My worst symptoms are hearing loss and tinnitus, but there are scary other things happening with facial weakness and dizziness...but I didn't consider that maybe the next set of doctors to review this thing might possibly suggest that I watch and wait.

There is so much to learn.

thanks,

Nancy
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LisaP

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Re: MRI Number 4
« Reply #9 on: April 12, 2010, 01:43:10 pm »
Hi Dave,

Congrats, I also am seeing Dr. McKenna and am W&W but my is small, so do you get to wait another year?  Do you have any symptoms?


Keep in touch and best wishes,

LisaP ;D
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LisaP
AN at 12mm by 7mm by 7mm,  shown no growth as of September 26, 2013, 5.5 years into this journey.  Next MRI 2015. Doctors: Mason and McKenna.  Continue to W&W

DHJ

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treatment option #2
« Reply #10 on: April 14, 2010, 11:27:08 am »
Hi All      Just got the OK from Dr. Leoffler for Proton treatment at MGH. Both he and Dr. Mckenna seem to think that I can wait another year for my next MRI but also would support treatment now or if I have more symptoms. Current symptoms include tinnitus,left sided hearing loss and some balance issues, all of which are managable..So I think that I will say my prayers and wait another year. I GUESS. Thank you for your support and may you all find peace and happiness.    Dave
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3yr wait and watch on left sided 2.9cm AN is over surgery 11/4/2011 Mckenna/Barker at MGH one year MRI 11/12/2012 all clear

nanramone

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Re: MRI Number 4
« Reply #11 on: April 14, 2010, 12:14:11 pm »
I guess position matters a lot. Mine is only medium sized, but is pushing into my brainstem. I've been told I should not wait for long by several doctors.

Maybe that's the reason some people can wait and some can't. I'm still learning

Nancy
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DHJ

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AN and brainstem
« Reply #12 on: April 14, 2010, 03:12:38 pm »
                Everyone of our ANs are different. Looking at pics of mine clearly show that IT is up against my brainstem but not compessing the brain. There is no DENT in my brain yet. So there it sits and I continue to wait and watch and live.    Peace Dave
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3yr wait and watch on left sided 2.9cm AN is over surgery 11/4/2011 Mckenna/Barker at MGH one year MRI 11/12/2012 all clear

Vivian B.

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Re: MRI Number 4
« Reply #13 on: April 15, 2010, 01:47:22 pm »
Hi Dave,

Mine is 2.0 cm and I will find out on May 5/2010 if it grew or not. Don't know if I can continiue on W & W. I am more confused now than before.

Vivian
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CPA AN(most likely meningioma) 1.6cm by 1.5cm by 1.9cm diagnosed early March 09. Watch and Wait.

DHJ

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Re: MRI Number 4
« Reply #14 on: April 15, 2010, 04:43:18 pm »
Hi Vivian       In the last 2.5 yrs I have convinced myself ,through research,that Radiation,Surgery and Waiting and Watching are my best options but the Docs don't think that I should do all 3 at once. I remain very confused but thankful to have options. Some how we will figure this out.   Best wishes Dave
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3yr wait and watch on left sided 2.9cm AN is over surgery 11/4/2011 Mckenna/Barker at MGH one year MRI 11/12/2012 all clear
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