Author Topic: 1st follow up MRI results  (Read 3969 times)

Rivergirl

  • Sr. Member
  • ****
  • Posts: 374
  • Rivergirl
1st follow up MRI results
« on: November 03, 2008, 05:16:53 pm »
My follow up MRI is stable and Dr. McKenna in Boston says I should have a follow-up in 6 months.  Now I should be happy but I am not, I thought for sure it was growing as I have continuous pain, pressure and tinnitus (some facial numbness & severe vestibular damage). So I just watch & wait and put up with the symptoms, not sure I like these options.
Diagnosed 6/2008
Right AN 2cmx8x9
Sub-Occipital at Mass General with Martusa and McKenna on 5/31/11
Right SSD, very little taste
I think I will make it!

leapyrtwins

  • Hero Member
  • *****
  • Posts: 10826
  • I am a success story!
Re: 1st follow up MRI results
« Reply #1 on: November 03, 2008, 09:04:36 pm »
Rivergirl -

Congratulations on your stable MRI.

I can understand your mixed emotions.  One of the reasons I chose not to watch & wait is because I didn't know if I would have the patience.  I imagined myself wondering if every twinge or ache meant my AN was growing.  I'm just the kind of person who'd worry too much.

I'm not trying to encourage you to give up watching and waiting, I'm just saying it takes a certain type of personality to watch & wait and it's not for everyone.

Good luck in sorting out your options; I know from experience it's a very tough decision.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Rivergirl

  • Sr. Member
  • ****
  • Posts: 374
  • Rivergirl
Re: 1st follow up MRI results
« Reply #2 on: November 04, 2008, 05:51:19 am »
Thanks Leapytwins...  did you feel better after? not just knowing the tumor was out but symptom wise as well.  House told me I should have it out before I loose all my hearing they say it is better to get it out before.
Diagnosed 6/2008
Right AN 2cmx8x9
Sub-Occipital at Mass General with Martusa and McKenna on 5/31/11
Right SSD, very little taste
I think I will make it!

leapyrtwins

  • Hero Member
  • *****
  • Posts: 10826
  • I am a success story!
Re: 1st follow up MRI results
« Reply #3 on: November 04, 2008, 06:08:53 am »
River -

I definitely felt better mentally and stress-wise post op; in fact, I started becoming a lot calmer once my surgery was scheduled.

I didn't have a lot of symptoms - just fullness in my ear and diminished hearing - so the surgery didn't really do anything to alleviate that.  I ended up SSD and the fullness in my ear is still present from time to time.  But if I would have waited for treatment, I might have had a lot more symptoms before treatment (facial numbness, headaches, major balance issues, etc).

Treating your AN, whether you choose surgery or radiation, before your symptoms get too bad is a very good idea.  I know that treatment is recommended to even patients with very small ANs if their symptoms are getting worse.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Tisha

  • Sr. Member
  • ****
  • Posts: 297
Re: 1st follow up MRI results
« Reply #4 on: November 04, 2008, 11:15:00 am »
Hi rivergirl,

I was just diagnosed 2 weeks ago with a 1.7 x 1.0 cm AN.  The recommendation by local neurotologist was to watch and wait.  I don't think I'm going to have the patience for that, but at least it's giving me time to plan options.

The first proactive thing I'm doing for myself if monthly audiology test.  My hearing in my AN ear, besides fullness is almost perfect.  I want to be sure that it doesn't decrease at all as I'm doing my research.  Are you having your hearing tests regularly?  I'm leaning towards FRS since it's not touching my brainstem and has good results with saving hearing and facial nerves.

I'm getting all my stuff ready to send to Johns Hopkins, STanford and Staten Island.  Perhaps Dr. Lederman who used to be at Cabrini.  I have deafness in my other ear for the past 12 years, gradually lossing it, to the point I wear a hearing aid in that one, so am very frightened about watching and waiting to the point my hearing decreases in my AN ear.

Good luck with your research and decision.  I think if I had good hearing in my other ear, and a very small tumor, I would be more patient.
1.7 x 1.0 x .9 cm (diagnosed Oct 2008)
1.8 x 1.2 x 1.1 cm  (July 2010-swelling)
1.5 x .9 x .9 cm  (Mar 2013 - 5 yr MRI)
Cyberknife at Stanford, week of 1/12/09 -  Drs. Chang and Soltys

Jim Scott

  • Hero Member
  • *****
  • Posts: 7241
  • To conquer fear is the beginning of wisdom
Re: 1st follow up MRI results
« Reply #5 on: November 04, 2008, 03:58:01 pm »
Rivergirl:

Congratulations on your stable MRI although it's obvious that you're somewhat ambivalent about this.  I suspect that you're not comfortable knowing you have this tumor, benign or not, in your head.  I suspect that 'Watch-and-Wait' is not going to work for you and you'll be seeking to address your AN with surgery or radiation in the near future.  That is your decision but it may end up being the best way to go with this.  Most people diagnosed with an acoustic neuroma that choose observation ('watch-and-wait') do so on a doctor's recommendation, of course, but also in part because they hope it will remain stable in size and they won't have to do anything about it.  However, that doesn't work for everyone.  Are you one of those AN 'Watch-and-Wait' patients who aren't comfortable watching and waiting?  Only you can honestly answer that question.   Just know that, should you decide to address your AN instead of simply observering it with semi-annual MRI scans, we'll support your decision.

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.

wendysig

  • Hero Member
  • *****
  • Posts: 1937
Re: 1st follow up MRI results
« Reply #6 on: November 06, 2008, 09:27:46 am »
River -

I definitely felt better mentally and stress-wise post op; in fact, I started becoming a lot calmer once my surgery was scheduled.

I didn't have a lot of symptoms - just fullness in my ear and diminished hearing - so the surgery didn't really do anything to alleviate that.  I ended up SSD and the fullness in my ear is still present from time to time.  But if I would have waited for treatment, I might have had a lot more symptoms before treatment (facial numbness, headaches, major balance issues, etc).

Treating your AN, whether you choose surgery or radiation, before your symptoms get too bad is a very good idea.  I know that treatment is recommended to even patients with very small ANs if their symptoms are getting worse.

Jan

Rivergirl,
I agree 100% with Jan.  My ENT and neurotologist also advised me that because of my symptoms, watch and wait were not advisable and that it would be easier to treat when it was small.   Only you can decide what is right for you --  treatment choice is very individual at this stage.  If you're really not happy watching and waiting maybe it is time to take action.  Whatever you decide, as Jim said, we'll support you.

Good luck,
Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

Nancy Drew

  • Hero Member
  • *****
  • Posts: 666
  • Colorado Tree Hugger!!!
Re: 1st follow up MRI results
« Reply #7 on: November 06, 2008, 12:15:54 pm »
Rivergirl,

As you can see from my sig, I was in the W&W mode for a while.  My AN was found by accident, and I wasn't having any symptoms to be concerned about.  Also my AN was small, and it wasn't in a critical area.  When I had my MRI 5/08, it was the first time the AN had grown, and I was starting to have symptoms.  My rule for considering treatment was if the AN starting growing or if at any time I started having symptoms.  So, when the AN met these conditions, I decided to go ahead with treatment.  Making the decision was difficult because I could have continued to W&W according to the doctors.  However, the majority of doctors I consulted told me these ANs are easier to treat when they are small.  Made sense to me, and  I just couldn't do W&W anymore because it was wearing on me mentally.  I did a lot of soul searching.  I researched the treatments, and I found a doctor I could trust.  Finally I decided on GK which felt right for me. 

I had GK on Oct. 21st so I am a "newbie postie".  I have hit some bumps in the road, but they haven't been that bad.  I started taking a short course of steroids a couple of days ago to reduce some swelling.  My hearing has been preserved although I won't know if I have lost any hearing until I have my hearing test in Dec.  I am a bit scared about what lies ahead, but I am taking it day by day.  I feel like I made the right decision...........but, I also know there is no turning back.  I am feeling positive about the future.

People here told me I would eventually get to my "gut" feeling about what to do.  I did, and you will, too.  The AN journey is full of the unknown.  You will get support here on this board, but in the long run the decision is up to you.  Best wishes.

Nancy

12/05 AN diagnosed left ear 4.5mm
06/08 6mm
Gamma Knife 10/21/08
1 year MRI  6.8mm x 5.5mm
2 year MRI  5.9mm x 4.9mm
3 year MRI  6.5mm x 6.0mm 
Slight Hearing Loss Post GK

Swedish Gamma Knife Center
Englewood, CO
Dr. Robert Feehs

Rivergirl

  • Sr. Member
  • ****
  • Posts: 374
  • Rivergirl
Re: 1st follow up MRI results
« Reply #8 on: November 06, 2008, 06:37:42 pm »
Thank you all for your support
Diagnosed 6/2008
Right AN 2cmx8x9
Sub-Occipital at Mass General with Martusa and McKenna on 5/31/11
Right SSD, very little taste
I think I will make it!

 


anything
anything