tinnitus outcome for various treatments

[micbendz]

Hi, my name is Michael and I found out janurary 05 I have a 1.8 cm AN on the right side, symptoms were substantial hearing loss and tinnitus. Two months later I still have constant high pitch tinnitus and almost complete hearing loss in the right ear. No problems with the facial nerve or balance so far. I'm currently scheduled for translab surgery at House April 1st, I had been considering switching to Cyberknife at Stanford prior to this complete hearing loss. Now the advantage of partial hearing retention is not as relevant. The left ear is fine. I've been told by two microsurgeons that there's a decent chance the tinnitus will reduce if the tumor is surgically removed although no guarantee. The radiosurgeon said with FSR its a coin toss, although after a year or two the ringing probably won't be noticed by the brain as much .I guess my question is has anyway looked into which treatment stands the best odds of decreasing tinnitus. If anybody has any observations I'd sure appreciate it. Right now I'm thinking about delaying surgery although it will create havoc with my work schedule. I want to make the right decision.
 
Thanks, Michael

[Mark]

Michael,

In terms of the tinnitus, I think the guidance you got from both docs is pretty accurate although I think that it would be optimistic that surgery would provide any more improvement than FSR. I was treated at Stanford with the Cyberknife for a 2 cm AN on the right side. I did (and fortunately still do) have very usable hearing so that made the choice easier for me. Given your hearing has diminished dramatically, preserving the facial nerve is obviously the major consideration. In everything I read, Translab surgery for medium to large AN gives you the best odds of preserving the facial function , especially when hearing preservation is not a consideration. The caliber of surgeon is always a variable, but I was given a 10-15% probablility of some level of impact from the docs I talked with.. Statisitically, FSR ( johns Hopkins / Stanford Studies) has around a 2% or less impact rate. So FSR still may be a preferred option for you from that perspective. I would definitiely quiz both the surgeons and Radiosurgeons on their facial nerve outcome experience to see which you feel gives you most comfort.  Just my 2 cents

Mark

[centimeter]

Mike
  My feeling is the surgeons are wrong. I've had trans-lab and have plenty of tinnitus. It really worsened about two years after surgery for some reason. I guess it took the ole' brain a while to figure out something was missing.

 C

[Becky]

Hi.  I've heard from a number of people who were prescribed a course of steriods with a sudden onset of hearing loss, that it can take up to a month but often some of the hearing loss subsides.  People who are watch and wait have commented on this also. 

Before you chalk up your hearing to being gone before it is, why wouldn't you try an anti-inflamatory first?  I also heard from someone who's hearing improved with such treatment, who subsequently had mid fossa, and whose hearing is now better than before.

The tinnitus I had before surgery (high pitch constant-tea-kettle ringing) is louder post-op.  It never goes away.

Becky
1.4 cm Translab 3/1/04

[centimeter]

  I think, Becky, this is not SHL as is reported the loss was significant Jan 5.  -Centimeter

Hi.  I've heard from a number of people who were prescribed a course of steriods with a sudden onset of hearing loss, that it can take up to a month but often some of the hearing loss subsides.  People who are watch and wait have commented on this also. 

Before you chalk up your hearing to being gone before it is, why wouldn't you try an anti-inflamatory first?  I also heard from someone who's hearing improved with such treatment, who subsequently had mid fossa, and whose hearing is now better than before.

The tinnitus I had before surgery (high pitch constant-tea-kettle ringing) is louder post-op.  It never goes away.

Becky
1.4 cm Translab 3/1/04

[Becky]

Centimeter,

Michael said, "I found out janurary 05 I have a 1.8 cm AN on the right side, symptoms were substantial hearing loss and tinnitus. "

Yes, sudden hearing loss is not the same as "substantial hearing loss".  I think you are right.

Becky

[ROGERM]

TO  ALL OF YOU WHO SUFFER WITH TINNITUS, I EMPATHIZE WITH YOU. MY AN WAS DIAGNOSED APP. 2 YEARS AGO AND I SUFFER WITH SEVERE TINNITUS. I HAD CYBERKNIFE AT STANFORD. MY FOCUS NOW IS IMPROVING MY TINNITUS. I BELIEVE THE BEST HOPE IS WITH TINNITUS RETRAINING THERAPY . I AM LOOKING INTO THE PROGRAM AT EMORY UNIVERSITY WITH DR. JASTERBOFF WHO ORIGINATED THIS APPROACH. I WOULD BE APPRECIATE HEARING FROM OF ANY OF YOU WHO HAVE UNDERGONE THIS TREATMENT AND WHAT YOUR EXPERIENCE WAS LIKE.
BEST TO ALL
ROGER

[micbendz]

Thanks to everyone to everyone who responded to my original question an I am sorry for not responding sooner. I was a little unclear in that I had substantiall hearing loss originally, about 45db in the lower frequencies, and then after a couple of months suddenly almost complete deafness in that ear(could not hear a dial tone) After my original posting I did get back to a short course of predisone steriod, in a few days my hearing did come back to what it was before this episode, it also seemed to help with some facial numbness I was starting to get. So in my case the predisone has helped me twice, it does work. I made the choice to go to Stanford for cyberknife, I was treated by Drs. Adler and Gibbs over 3 days this last week. Thus far everying seems the same as pretreament, I go back for a follow up MRI and audiogram in six months. It's predicted I'll have tumor control, no damage to my facial or balance nerves, and hopefully my right side hearing will not degrade much further, time will tell. Otherwise its back to normal life. I know I was a good candidate for translab surgery, for me the various risks attached to that(long term head aches, damage to facial nerve, loss of balance) outweighed the potential long term risks of the radiation. I also got conflicting opinions on whether radiosurgery makes later microsurgery more difficult, should that ever be needed. My tinnitus is still the same immediately post treatment, a hissing in my right ear, sometimes accompanied by a high pitch tone like a dog whistle. But it's funny, after 4 months I've gotten used to it and don't notice it as much, I'm coming to terms that I may have it the rest of my life. I hope I can answer any questions.
Thanks, Michael

[cecile k]

Hi Michael:

I had suboccipital surgery and my tinnitus became much louder post op. Glad to read that your FSR treatments have gone well. It really is important for each person to do their own research and come up with a treatment plan that is best for their situation. All the best.