ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: v357139 on March 26, 2013, 12:56:33 pm
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Does anyone know anyone who has had any success in preserving hearing for mid to large ANs, while also getting it all out? Is that even possible? Mine is 2.7cm, in the CB angle, also pressing on brainstem. Hearing is still decent in that ear. 3 long months since diagnosis, and I am about ready to give up on hearing, and go with the doctor giving no chance to save hearing and wanting to translab for more direct facial nerve access. But before I do, I'd like to make sure one last time, that I am not missing some doc who has had some success with hearing in ANs my size. Thanks all.
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I don't think you missed anything. To my knowledge, there is no doctor or procedure that can guarantee hearing retention following surgical removal of an acoustic neuroma of any size. Obviously, the Middle Fossa and Retrosigmoid surgical approaches offer the possibility of hearing retention but the odds are not terribly high and there are never any guarantees. As you know,the Translab procedure eliminates the option of hearing retention altogether. However, for most AN surgical patients, avoiding serious facial paralysis issues trumps hearing retention because with SSD, one can employ a BAHA to help compensate or simply adjust, as I have. Facial mobility issues are often far more difficult to surmount and doing so takes some time. The choice, of course, is yours as you will have to live with the results of your decision. Whatever it may be, we'll support you and offer our hopes and prayers for a great surgical outcome Please keep us updated. Thanks.
Jim
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Thanks Jim. I will be deciding soon. Just looking for a chance on hearing, but haven't found any yet for my 2.7cm AN. Any others out there?
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I think it is extremely rare. In all these years we have seen very few patients with ANs of this size who have retained some hearing after retrosigmoid. Certainly the odds for hearing preservation are not good so most doctors will tend to recommend the approach that they feel has the greatest chances of preserving the facial nerve.
Marianna
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Thanks. I thought I saw some hearing preservation with retrosigmoid on this site, but seems like almost impossible in ones above 2.5cm. Does that sound right?
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Totally agree with Jim; no doc can guarantee you anything.
My AN was almost 3 cms and I chose retrosigmoid in the hopes that I could save my (diminished) hearing; my odds were 50/50. During surgery my docs discovered my hearing nerve was wrapped around my AN, so in order to remove the entire AN they sacrificed my hearing nerve. As a result, I am SSD (single-sided deaf). I opted for a BAHA 9 months after my AN surgery and have never regretted it.
I can't recall anyone on the Forum who had a mid to large AN and kept their hearing.
Jan
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Thanks. ONe person in here told me they had 2.8cm and had hearing saved. Just wondering if any more, or if that was extremely rare once in a lifetime type of thing.
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As Jim and Jan said, no doctor can guarantee hearing preservation before any treatment, be it surgery or radiation, they can only "give it their best shot."
My original AN was 2.6 cm at the time of retrosigmoid surgery. I had approximately 80% of my hearing before surgery, 20% afterward, but with 100% speech discrimination so I successfully used a traditional air-conducted hearing aid until the tumor grew back three years later (very unusual following total removal), necessitating further treatment. Because of my somewhat unusual situation, a second surgery was done (translab) and all hearing destroyed. However, a bone-anchored hearing abutment was implanted at the same time as this second surgery. I love my Oticon Medical Ponto Pro!
Clarice
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Thanks. ONe person in here told me they had 2.8cm and had hearing saved. Just wondering if any more, or if that was extremely rare once in a lifetime type of thing.
Other than Clarice, who already responded to this thread, I remember only one more person from the forum with an AN of this size who had surgery with Dr. Akagami in Vancouver and had her hearing saved. So indeed it seems that it is very rare.
Marianna
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Does sound rare. Just trying to cover all bases. Hearing is the hump I need to get over, as most docs I met proposing translab, and hearing is still decent. I do realize facial is more important.
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I agree with all that hearing preservation is rare,, but location of the tumor is a very important aspect to be considered also ,,, I had about the same size tumor, good hearing and was recommended translab as it was very deep and pressing on brainstem,, and as you say that gives best view of facial nerve ,, but just as no guarantees can be given about hearing ,, the same goes for facial nerve,,, that was also my most important nerve to preserve; however, it was not to be,, so I had translab and still lost facial nerve,,
I just tell you this so you go into surgery knowing there are no guarantees ,,period,, there are Dr.s That will leave sliver of tumor on facial nerve to preserve it and radiate it or watch it later,, I just feel you need to hear from all sides,, not to scare you or dissuade you from any decisions you have made,,
Best of luck to you, we all care on here how things go with each of us as we are in "unique" situations,, Jane
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I believe hearing preservation for larger tumors is quite good using Cyberknife or Gamma Knife.. Around 50%
Facial nerve preservation approaching 100%
If hearing preservation is one of your goals, maybe further exploration of radiation is warranted.
Dr Kondziolka for Gamma Knife and Dr Chang for Cyberknife are two notable experts.
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I agree with all that hearing preservation is rare,, but location of the tumor is a very important aspect to be considered also ,,, I had about the same size tumor, good hearing and was recommended translab as it was very deep and pressing on brainstem,, and as you say that gives best view of facial nerve ,, but just as no guarantees can be given about hearing ,, the same goes for facial nerve,,, that was also my most important nerve to preserve; however, it was not to be,, so I had translab and still lost facial nerve,,
I just tell you this so you go into surgery knowing there are no guarantees ,,period,, there are Dr.s That will leave sliver of tumor on facial nerve to preserve it and radiate it or watch it later,, I just feel you need to hear from all sides,, not to scare you or dissuade you from any decisions you have made,,
Best of luck to you, we all care on here how things go with each of us as we are in "unique" situations,, Jane
I guess the answer is there are no guarantees. Thanks.
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I believe hearing preservation for larger tumors is quite good using Cyberknife or Gamma Knife.. Around 50%
Facial nerve preservation approaching 100%
If hearing preservation is one of your goals, maybe further exploration of radiation is warranted.
Dr Kondziolka for Gamma Knife and Dr Chang for Cyberknife are two notable experts.
All recommend surgery over GK due to size and location. Thanks!
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Well just to leave no stone unturned, I am seeing a Dr. Kalmon Post at Mt Sinai. Apparently he has some expertise in hearing preservation. He also requires a BAER test, which no one else asked for, so I will learn something new. Anyone have knowledge of DR Post?
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Never heard if it. I'm curious to hear what you did out. I lost the hearing following retrosigmoid and I can relate to your thorough investigation of doctors who have expertise in hearing preservation. It's a huge loss for me.
Just keep one thing in mind. Tumors can be slightly larger than what the MRI or docs predict. Imaging said mine was 1.9. In fact my surgeons measured it at 2.5 during surgery. I don't know if this is common or not, but my expectations going into surgery were not met. I'm coping...
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Thanks. He said he has saved some this size, but not many. I figure last chance to try for hearing. If he does not give much chance, then I may go ahead and translab. I get the general idea that translab is usually simpler, although seems also like it depends on who you talk to.
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My hearing was so bad, that translab was the easy decision. Since your hearing is still pretty good, that makes it much more difficult. Two doctors told me that people that have retro, usually loose that ear after about 5 years. I'm glad I did not have to make that choice, but I can tell you that being SSD is not all that bad. I have a BAHA and it is a wonderful device. I cannot locate where sound is coming from and that is the worst part. Other than that, life is good! There are posters here that had retro, and still have their hearing. Not trying to chase you away from that...just telling you what my doctors said. These ANs are a real roll of the dice.
James
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Thanks. This last doc did BAER test and said no chance of keeping hearing. Is the translab really better, where hearing is not an option? He still likes retro, for other reasons.
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I hope I do not throw your decision up in the tizzy but when I read your post I felt I had to respond to let you know what my experience has been. And I think you'll see how varied outcomes can be.
Had total hearing loss when my 2.5 x 2.3 x 2.5 cm AN was diagnosed. Total hearing loss was sudden. Had started noticing a slight hearing loss a few years prior to diagnosis. Neuro-surgeon recommended GK. With GK had minor improvements in balance, facial movement and taste. No change in hearing but developed double vision. Two months after GK started having seizures, tumor had swelled to about 3.0 x 2.7 cm. Lost consciousness a number of times, got placed on anti-seizure medication. Neuro-opthamologist said high pressure causing optical nerve to swell thus double vision. Neuro-surgeon recommended tumor removal as it was compressing brainstem even though tumor showed necrosis. Checked into hospital that day, retrosigmoid surgery the next day, no time to research. Tumor was debulked, it was sticking to the nerve and brainstem so it could not be completely removed. Surgeon said the tumor center was liquid and outside was like orange rind so I think the GK was doing what it was supposed to do but maybe too good and swelling became a problem.
Day after surgery noticed taste was quite improved and I told my husband "I don't know why I think this but I think I'm finally going to get better." (After GK recovery was kind of up and down even though overall I thought I was getting better.) Went home 3 days after retro surgery and was on the road to recovery. Two and a half months later returned to work part-time and a couple weeks after that full time.
Two months after surgery started hearing very high pitched sounds -- birds chirping while I went for walks to gain strength and work on balance. Five months later could hear a broader range. Nine months later hearing was tested and was at 75%, considered mild-moderate hearing loss. Now, at two years, hearing loss is still in the mild-moderate range but have tinnitus which has gotten "louder" in the last couple of months but is bearable. I cannot complain as hearing was the one thing that all the doctors said would not recover.
At 16 months, tumor was down to 1.0 x 1.7 x 1.8 cm...may not seem like much but it looks shriveled in the MRIs. Two years later, am doing very well, no double vision, balance is good, taste (and weight) and facial movement are back. Will be scheduling my two-year checkups soon.
Best of wishes to you on your decision.
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My doc did translab because it was a direct shot at removing all of the tumor. My hearing was not the issue...saving my face was a big deal. I would do it all over again. Being SSD is not all that bad. I was pretty close to it prior to the surgery, but I still had stereo hearing, and I miss that. My BAHA makes my life much better.