Author Topic: Does anybody hear have good hearing?  (Read 7656 times)

mindyandy

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Does anybody hear have good hearing?
« on: December 20, 2011, 12:10:38 pm »
I'm curious to see how many folks here dx with an AN still have good hearing in the AN ear?

Sorry for asking a million questions. You all are just soooo helpful.
14mm dx 9/07. CK done Seattle  1 year MRI showed some shrinkage. 4 year MRI 2mm growth nothing conclusive. Trigminal nerve involvment Retrosigmoid Friedmand/Schwartz HEI March 7,2012

New girl

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Re: Does anybody hear have good hearing?
« Reply #1 on: December 20, 2011, 03:35:39 pm »
Hi MindyAndy,

Pre-surgery I had some high frequency hearing loss in my AN ear.  It was not bad enough to necessitate a hearing aid.   I would say my hearing was still good.  I think it is the same post surgery.  I am seeing my ENT next week for a post surgery hearing test.
9mmx14mmx9mm
Diagnosed 6/1/2011
Retrosigmoid Surgery 9/27/2011
Daniel Lee (MEEI) & Fred Barker (MGH) - Exceptional Surgeons

alabamajane

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Re: Does anybody hear have good hearing?
« Reply #2 on: December 21, 2011, 10:03:12 am »
I had very good hearing in AN ear pre surgery.. 92% word recognition and only about 15% hearing loss. Dr. was surprised due to size of tumor, 2.8cm.. I did have tinnitus, but could hear pretty well...
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

HoosierRick

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Re: Does anybody hear have good hearing?
« Reply #3 on: December 21, 2011, 06:14:08 pm »
My hearing loss pre-surgery was 25% and it is about the same post-op.  I had a hearing test before leaving HEI and actually have better word recognition than pre-op.  Lucky I guess...that and HEI is the best.  Still have tinnitus, but I can deal with that!
3mm x 3mm right side AN. Diagnosed 10-13-11. Surgery @ HEI w/Dr. Wilkinson and Dr. Schwartz 12-07-11.

Peter325

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Re: Does anybody hear have good hearing?
« Reply #4 on: December 21, 2011, 09:36:48 pm »
My hearing is pretty good in the AN ear, at least 75% of normal - I have tinnitus though but it's not too bad. I have a large tumour too - but none of it is in the ear canal, it is all pressing my brain stem - not sure if it's good or bad yet.  :)
Diagnosed May 2011 with a 2.8 x 2.6 x 2.5 cm right side AN - Surgery with Dr. Akagami and Dr. Westerberg on Oct 9th, 2012 - SSD and some minor balance issues - no noticeable facial weakness.

ppearl214

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Re: Does anybody hear have good hearing?
« Reply #5 on: December 22, 2011, 05:16:39 am »
mindy  :-*

*raises hand*

Yes, I do.

Pre-CK, I had tested with 96% word recognition in my AN ear.

At my 5 yr post-CK hearing test (done much earlier in 2011), my AN ear is still at 96% word recognition.

CK team at Beth Israel Boston is reporting 100% hearing preservation for those treated with AN's/Skull base tumors. Paper is now published. I am part of that study (I signed up to participate in the study when I decided on CK at BI and they asked me to participate).

As we know, "individual results may vary."

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Syl

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Re: Does anybody hear have good hearing?
« Reply #6 on: January 01, 2012, 12:38:16 pm »
mindyandy:

It was my hearing loss that made me go to the Dr. My initial hearing test showed significant loss with word recognition. Post-op, I lost more of my hearing.

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.

chloes mema

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Re: Does anybody hear have good hearing?
« Reply #7 on: January 01, 2012, 08:43:12 pm »
Mindyandy - my hearing loss dropped from 84% to 62% in about a year.  Also, my word comprehension is bad, don't know / remember what the % is.  Both are what sent me to the ENT for testing who sent me for an MRI which uncovered the AN.

About the only thing I can hear very well is the dang tinnitus.     :P

My neurosurgeon was not encouraging about my saving much of my hearing if I do either radiation or surgery.  One procedure I'd loss all hearing the other procedure he might be able to save 40%. 


Karen
Diagnosed October 2011
Oct '11-9 X 6 mm left ear
Mar '12 - 1.25cm
Tinnitus, imbalance, and mild dizziness (ditsy)
My AN = Annoying Nuisance
Jan'12 W&W
May'12 CK completed
Oct'12 hemifacial spasms
Dec'19 It's back

Brewers7

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Re: Does anybody hear have good hearing?
« Reply #8 on: January 02, 2012, 11:45:54 am »
Although I lost all hearing in my AN ear, I have 85% word recognition with my Transear.
Translab surgery 12/15/2008 followed by CSF leakage repair and 3 additional surgeries for MRSA of the brain (NOT typical) SSD,  facial and vocal cord paralysis, numerous reconstructive surgeries, Transear 12/2010

Twindy

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Re: Does anybody hear have good hearing?
« Reply #9 on: February 09, 2012, 02:03:49 pm »
Phyl,
Does the paper you refer to discuss long term hearing success?  Ten + years?  Just curious since I'm 40 my doctor is pushing surgery in attempt to save hearing and tells me I WILL lose hearing in 6-10 years with radiation option.

mindyandy

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Re: Does anybody hear have good hearing?
« Reply #10 on: February 09, 2012, 02:14:56 pm »
Twindy
I had CK done 4 years ago and my hearing is still great. I think (don't quote me) most people that have great hearing before radiosurgery keep their hearing. There are a few people that I have read on here that had great hearing and lost some if not all of it afterwards. Not everybody. Depending on swelling etc.
Are you having radiation or surgery?
14mm dx 9/07. CK done Seattle  1 year MRI showed some shrinkage. 4 year MRI 2mm growth nothing conclusive. Trigminal nerve involvment Retrosigmoid Friedmand/Schwartz HEI March 7,2012

Twindy

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Re: Does anybody hear have good hearing?
« Reply #11 on: February 09, 2012, 02:44:41 pm »
Ha...GOOD QUESTION!  I went to the radiologist yesterday thinking he would confirm my decision to have surgery (that's what my doctor said would happen!), but instead he told me this is a fine option for me, so now I'm very confused!  Dear hubby has been pouring over medical papers--not much data on long term hearing with radiation, but one paper by Pittsburg folks suggest hearing declines after 10 years.  Gantz's paper suggests I have about a 66% chance a preserving hearing long-term with his surgery.  Just exploring it all so I can feel good about my decision, but this did thow me for a loop.  As I said, my doctor had dismissed it so readily.

ppearl214

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Re: Does anybody hear have good hearing?
« Reply #12 on: February 09, 2012, 06:42:18 pm »
Phyl,
Does the paper you refer to discuss long term hearing success?  Ten + years?  Just curious since I'm 40 my doctor is pushing surgery in attempt to save hearing and tells me I WILL lose hearing in 6-10 years with radiation option.

I found the paper/abstract online.  I was part of this study as one of the 10 AN's (amongst all patients that signed up for the study). Please note my CK was performed April 2006 so I'm just shy of 6 yrs (I had the 5 fractionated treatment referenced in the abstract.  At that time, I did not know of anyone that had that course of treatment). Hearing levels, as of now, remain the same as I have previously reported.  Mine was also one of the ones noted that decreased in size (discussed in other threads on this forum)

Again, "individual results may vary".
Phyl

======================================================

http://www.ncbi.nlm.nih.gov/pubmed/21466421?dopt=Abstract

Comput Aided Surg. 2011;16(3):112-20. Epub 2011 Apr 6.

Clinical outcome after hypofractionated stereotactic radiotherapy (HSRT) for benign skull base tumors.

Mahadevan A, Floyd S, Wong E, Chen C, Kasper E.


Source

Department of Radiation Oncology, Beth Israel Deaconess Medical Center and Harvard Medical School, Boston, Massachusetts, MA 02445, USA. amahadev@bidmc.harvard.edu


Abstract

OBJECTIVE:

Surgical resection of skull base tumors can be associated with significant morbidity. In cases where the risks outweigh the benefits, radiation therapy can offer an alternative means to effectively control tumor growth. However, the optimal dose regime for radiation therapy remains controversial. The objective of this study was to assess the neurological outcome, local control rate and morbidity associated with a 5-fraction regime of hypofractionated stereotactic radiotherapy (HSRT) for benign skull base tumors.

METHODS:

Twenty-six patients presenting with two of the most prevalent benign skull base tumors were included in the study. The tumors comprised 16 meningiomas and 10 acoustic neuromas. All patients exhibited preserved cranial nerve function prior to treatment, and a detailed audiological assessment was performed pre- and post-treatment for those patients with acoustic neuroma. Stereotactic radiosurgery was administered with the frameless CyberKnife Robotic Radiosurgery System. In each case, a 5-fraction HSRT regime was used: a dose of 5 Gy × 5 = 25 Gy to 6 Gy × 5 = 30 Gy was prescribed for skull base meningiomas, and 5 Gy × 5 = 25 Gy was prescribed for acoustic neuromas.

RESULTS:

The clinical and radiographic median follow-up was 22 months (range: 6-54 months). Radiological assessment showed local control in all 26 tumors (100%), and in 5/26 patients (20%) the tumor showed a decrease in size. Cranial nerve function was preserved in all cases thus far studied; however, 28% of patients had transient Grade II side effects, including fatigue, headaches, unsteadiness and transient subjective worsening of hearing. In two of these patients, the period of transient worsening of hearing was associated with a temporary increase in the size of the tumor on control T2 MR images, consistent with radiation-induced edema. One patient had transient decrease in visual acuity from treatment-related edema. At the last follow-up, 3/16 patients with meningiomas (19%) and 2/10 with acoustic neuromas (20%) showed a decrease in tumor volume and improvement in hearing.

CONCLUSION:

A 5-fraction stereotactic radiotherapy regime, as used in this study, seems to be effective for local control of benign skull base tumors in this early follow-up evaluation. Neurological function preservation is excellent with this short regime in the early post-treatment period, but long-term follow-up is crucial for validation.


PMID: 21466421 [PubMed - indexed for MEDLINE]
« Last Edit: February 09, 2012, 06:45:26 pm by ppearl214 »
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

leapyrtwins

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Re: Does anybody hear have good hearing?
« Reply #13 on: March 12, 2012, 08:36:30 am »
My AN (left) ear is totally deaf - but my BAHA helps tremendously.

My right ear is 100% hearing.

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