Author Topic: 2 years and "tooma" free  (Read 4664 times)

texsooner

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2 years and "tooma" free
« on: August 13, 2010, 06:59:43 am »
Got my 2 year "tube of gloom" visit done this week and it looks good. Most know this, but you can get a copy of the report and CD of the images of your MRI's. I recommend that everyone do that. I have a folder at home with all the reports and CD's.

I have to admit that I don't understand all the medical jargon in the report, but my neurotologist called yesterday to assure me that everything looked good and there's no evidence of re-growth. I thought it might be educational for some and others may want to compare, so here's the short report from the technician on my MRI done earlier this week:

MRI brain and internal auditory canals without and with contrasts 08/10/2010

Clinical: Followup post acoustic neuroma resection.

This study was performed on a 3.0 Tesla MRI. Comparison is made to the previous MRI of 08/17/2009.

No intracranial hemorrhage, ventriculomegaly, midline shift, or acute ischemia is seen. Flow voids are seen within the vessels at the skull base. Several minimal central white matter foci of increased T2 and FLAIR signal identified, without corresponding diffusion abnormality or abnormal enhancement. No brainstem involvement is identified. No abnormal supratentorial enhancement is identified.

MRI of the internal auditory canals again shows left occipital retrosigmoid craniotomy with calvarial flap. Mild subjacent pachymeningeal enhancement is seen, with mild encephalomalacia of the lateral aspect of the left cerebellum. The previously described enhancement within the left porus acousticus has improved. Minimal smooth pachymeningeal enhancement along the left petrous apex is stable.

The brainstem is unremarkable.

IMPRESSION: Improved enhancement within the left porus acusticus since 08/17/2009. No evidence of residual or recurrent neoplasm identified.



I thought the comment about the unremarkable brainstem was uncalled for ;), but my doc assured me this was a good thing since the "tooma" before surgery was pressing hard against the brainstem. I try to read this report to family and friends, and while they are happy for me, I know you folks understand better. 

Thanks for the support over the last 2 years.

Patrick


3.5cm left side AN; 11 hour retrosigmoid surgery 8/11/08 @ Memorial Hermann, Houston - Texas Medical Center with Drs. Chang and Vollmer; home on 8/13/08;
SSD(w/tinnitus); dry eye; Happy to be here and feeling good.

Soundy

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Re: 2 years and "tooma" free
« Reply #1 on: August 13, 2010, 07:17:27 am »
I had to fight to get copies of reports and have no CDs ... do have some big films I thought of making into lamp shades but family thinks this would be morbid ...

Glad you got a good report ... I even saw my favorite word doctors used when describing these things ... unremarkable ... ;D

Congratulations ...
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

leapyrtwins

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Re: 2 years and "tooma" free
« Reply #2 on: August 13, 2010, 08:47:29 am »
Congratulations, Patrick!!!  ;D

Stellar news!   ;D

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

Syl

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Re: 2 years and "tooma" free
« Reply #3 on: August 13, 2010, 09:09:34 am »
Congrats on a clean MRI and an unremarkable brainstem. How long before your next MRI?

Syl
1.5cm AN rt side; Retrosig June 16, 2008; preserved facial and hearing nerves;
FINALLY FREE OF CHRONIC HEADACHES 4.5 years post-op!!!!!!!
Drs. Kato, Blumenfeld, and Cheung.

Lizard

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Re: 2 years and "tooma" free
« Reply #4 on: August 13, 2010, 09:21:56 am »
Congrats, great news.  I'm coming up on my 3 year mark here in a couple months and I'm starting to get a little nervous, but hopefully I have not regrowth  :)
Take care and thanks for the positive post...its helps!
Liz
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

Jim Scott

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Re: 2 years and "tooma" free
« Reply #5 on: August 13, 2010, 11:49:38 am »
Patrick ~

Congratulations on your excellent MRI results!  We appreciate your posting the actual report as an information piece - and I hope all your future reports remain 'unremarkable'.  :)

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.

texsooner

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Re: 2 years and "tooma" free
« Reply #6 on: August 13, 2010, 01:52:40 pm »
Thanks everyone.

Syl, I don't know yet when the next MRI will be.....that's the first question on my list when I have my official appointment with my neurotologist on Aug 26th. I think different doctors have varying philosphies on frequencies of doing MRI's. I thought I remembered my doc saying at the beginning that we'd do yearly MRI's for the first 5 years, and then spread them out further after that...but we'll see.

Patrick
3.5cm left side AN; 11 hour retrosigmoid surgery 8/11/08 @ Memorial Hermann, Houston - Texas Medical Center with Drs. Chang and Vollmer; home on 8/13/08;
SSD(w/tinnitus); dry eye; Happy to be here and feeling good.

ksiwek

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Re: 2 years and "tooma" free
« Reply #7 on: August 13, 2010, 02:32:56 pm »
Such good news!  So happy for you!  You must have such a feeling of relief :)  Have a great weekend...and celebrate your great news!
Translab 6/4/10 for 4+ cm left AN.  Drs Friedman and Schwartz at HEI saved my life!
BAHA surgery on 10/7/10 with Dr Battista of Chicago Ear Institute (Oticon Ponto Pro)

leapyrtwins

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Re: 2 years and "tooma" free
« Reply #8 on: August 13, 2010, 05:28:03 pm »
Patrick -

my doc follows the same protocol as your doc.

Annual MRIs the first 5 years post op.  Then if they are clean, every 2 or 3 years for a while.

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

texsooner

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Re: 2 years and "tooma" free
« Reply #9 on: August 26, 2010, 03:40:59 pm »
Just to close the loop after my appointment today with my neurotologist, he confirmed everything looks good. He said he can detect only very slight facial weakness because my AN side eyebrow would not lift quite to the same level as the other, but it's not noticeable really by anyone (except him and me). He did a couple of balance tests on me and said my balance was very good considering my situation. They did a hearing test on my hearing side and the audiologist said I have perfect hearing on that side. We discussed the BAHA possibility again, of which I might consider during the next year.

I asked about what he thought was the probability of re-growth, and he said in cases such as mine, it is approx 5%.

He also told me that if the next year's MRI (which would be at 3 years) looks good, we will space out the MRI's to every other year. He didn't say how long the every other year frequency would last. 

Thanks again for the support.

Patrick
3.5cm left side AN; 11 hour retrosigmoid surgery 8/11/08 @ Memorial Hermann, Houston - Texas Medical Center with Drs. Chang and Vollmer; home on 8/13/08;
SSD(w/tinnitus); dry eye; Happy to be here and feeling good.

iluuvpups

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Re: 2 years and "tooma" free
« Reply #10 on: August 26, 2010, 03:43:58 pm »
What wonderful news!   You're very lucky!!
Original 1.75cm left-side AN diagnosed Feb 2010
Translab surgery May 27, 2010 with Drs. Kartush and Pieper of MEI
SSD on left side, some facial weakness, tear duct doesn't work
Found I actually had a facial neuroma during translab
Remaining 6mm facial neuroma - watch and wait

leapyrtwins

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Re: 2 years and "tooma" free
« Reply #11 on: August 26, 2010, 05:03:28 pm »
Tremendous news, Patrick  ;D

Congrats, again!

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

jaylogs

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Re: 2 years and "tooma" free
« Reply #12 on: August 26, 2010, 05:05:03 pm »
Congrats on the 2 year!! I am sorry, though, about your unremarkable brainstem...don't feel bad, we all know that it as well as you yourself are indeed REMARKABLE  because that was what this report was! :)  Stay cool!
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

Brendalu

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Re: 2 years and "tooma" free
« Reply #13 on: August 27, 2010, 04:02:57 am »
Congratulations, Patrick!  Every other year sounds awesome.  Isn't it funny we can pick out what we perceive to be our imperfections when others can't?  I think you are a remarkable person and truly admire all you have accomplished since the intrusion of the AN!  When is the next ride/run?
All the best,
Brenda
Brenda Oberholtzer
AN surgery 7/28/05
Peyman Pakzaban, NS
Chester Strunk, ENT

Kathy M

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Re: 2 years and "tooma" free
« Reply #14 on: September 02, 2010, 08:25:18 pm »
Congrats, Patrick, on the clean MRI!!!  I'm kinda late checking in, but had to comment.  You've been one of my guiding lights since my diagnosis in November of 08 (can it really be that long ago) and it's great that you have such an unremarkable head.  Thanks for the advice on getting these reports in hand, also. 

Keep on movin' in the forward direction!!!!

Kathy
AN diagnosed 11/14/08, 3+cm, Retrosigmoid 1/13/09, Univ. Hosp., Cincinnati, Drs. Tew and Pensak
no facial nerve or eye issues!
3 more surgeries related to staph infections & osteomylitis over next 13 months.  New diagnosis of breast cancer.  Treatment completed 08/27/10.  Moving on!!!