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Author Topic: reasonable expectations ?  (Read 3380 times)

syman

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reasonable expectations ?
« on: August 31, 2011, 01:04:14 pm »
I am newly diagnosed.  Just getting plugged into info like this website.  I have mild to mod hearing loss in one ear with significant ringing but no other symptoms.  Is it reasonable for me to hope for an outcome after treatment to keep current level of hearing in this ear without other complications ?  And if so, to hope for beneficial use of hearing aid ?  Finally, can I hope to lose the ringing after treatment ?  thanks.
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Cheryl R

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Re: reasonable expectations ?
« Reply #1 on: August 31, 2011, 01:30:53 pm »
Syman, it will depend on how big your tumor is, the location and if the blood supply has affected the tumor and acoustic nerve.           If it is small, then mid fossa may help you keep your hearing where it is.     You also have to make sure to go to a surgeon who does many mid fossa's.   Not all surgeons do mid fossa.    My neurotoligist at Univ of Iowa does.               The tinnitis is there for good unfortunately.           
   Some people do use hearing aids and many have the BAHA which the rod implanted in the bone and the processor attached to that.                        Good luck in your journey ahead and that we can be of help.                                        Cheryl R
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Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

CHD63

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Re: reasonable expectations ?
« Reply #2 on: August 31, 2011, 02:29:08 pm »
Syman .....

Adding my welcome to this forum.  Cheryl has given you excellent information already.  You might also want to send for the ANA free informational materials to help in your decision-making process.  See:  http://anausa.org/index.php/contact-us/free-ana-information-packet

There are a number of physicians/medical centers around the country who will do free consultations, based on your most recent MRI and audiogram.  My advice would be to get several opinions for treatment.  Depending upon the size of your AN and your situation, you may want to explore both surgery and radiotherapy.

Best wishes, thoughts, and prayers.

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

skipg

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Re: reasonable expectations ?
« Reply #3 on: September 01, 2011, 07:11:01 am »
Syman,
Welcome to the site. For me it was research, research, and more research. Treatment types, location of facilities, competent and knowledgeable doctors, and finally 2nd, 3rd, and 4th opinions. I consulted with 2 doctors at the symposium in Cincy, one surgery and one radiation (Novalis). Back home I ended up seeing 1 ENT, 2 surgeons, and 1 radiation specialist (cyberknife).
The radiation Dr, the ENT, and 1 of the surgeons work together on AN"s and all agreed on the watch an wait. Even the other surgeon who does only 6-12 an's per year agreed on the watch and wait. This site is a valueable resource on your journey.
Skip
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Self diagnosed 11/17/2010 (love the internet)
MRI 12/2010 Official diagnosis 1/3/2011 RT AN 7x6x4mm's
MRI 6/17/2011 no change still 7X6X4
MRI 7/20/2012 growth spurt to 14mm
Aug 8th consult and decided on Proton Therapy
Proton Therapy @ Hampton Proton Institute,       done on 11/20/12
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