Perfect Hearing - now what??

[dgrummer]

And the journey continues….to recap…my husband was diagnosed with 2.2x2.8 right AN in August.  We’ve talked to Dr. Mickey at UTSW and Dr Brackman at House who both recommended translab – but this was before any hearing test.

We just returned from the 2nd hearing test in 2 weeks and a meeting with Dr. John Dornhoffer/ENT at UAMS (that is Univ of Arkansas).  Both hearing test came back with – ‘stone cold perfect hearing’ as Dr. Dornhoffer put it.  Something he’s never seen before with a tumor of his size.  He even had to double check the report to make sure he was looking at the right patient.

So – he recommends retrosigmoid /Suboptical approach and provided a 30% chance of saving the hearing.  I’ve not done any research on this approach so here is my first question.

If his hearing is fine – what are the negatives about a least trying this approach?  Is there a high change of problems with the facial nerve?  Just seems like – what do we have to loose with going with this approach – I mean – besides the hearing   His only symptoms are facial numbness when he is stressed or tired.

Also – does anyone have any idea of House statistics with hearing preservation with this approach and this size tumor?  Dr Dornhoffer said that if he could go anywhere in the world – knowing that translab was the approach that would be taken – he’d go to Brackman – b/c no one has more experience.  But giving that we are considering a different approach – he wasn’t sure that House had any more experience than his team - he really didn't know.  I’m planning on calling House and asking – but thought someone might already have done the research.

We meet with the neurosurgeon that will be teaming with Dornhoffer tomorrow morning – Dr. Ali Krisht.  He does both GammaKnife and conventional surgery – so we’ll be able to discuss both options with him.

We really like this Dr – he was very personable and honest.  He is pretty much deaf himself – so he sympathized with the possibility of my husband loosing his hearing.  He is very concerned that since Rob has no hearing loss now – that a sudden loss will be very difficult for him to get use to.  But this Dr also does the BAHA implants and said he’s been having very good success with those and thought Rob would be a perfect candidate for that – if we go that route. 

Thank you everyone for your support – especially you Jennifer (becknell)!!

[gemaste]

I had your new procedure with no problem with my facial nerve it remained perfect after surgery.  I had perfect hearing before surgery but my tumer was wrapped arouond my hearing nerve.  I lost my hearing during surgery.  I am getting along well after my 08-02-2005 surgery.  I am getting cross over hearing aids on Tuesday of this week.  My only problem has been the ringing in my deaf ear.   

My surgery was done at Barnes hospital in St. Louis.   

Glenn

[becknell]

Hey, Dana. I'm surprised these doctors would recommend translab without even seeing a hearing test!!!!!  My husband had the suboccipital approach for his tumor. (It was going to be translab but they changed it before the surgery.) He had lost most of his hearing before the surgery, and he lost all of it after the surgery, but they had told us he would bcs it was such a large tumor. His facial nerve was intact with no paralysis. I suspect the facial nerve preservation depends more on the experience of the team than on any one surgical approach -- but you might find some who would disagree. Seems if your husband has perfect hearing, it would be worth trying to save! But you'd probably have the greatest chance of saving the hearing with radiosurgery, so it seems like you might want to seriously consider that. I'm glad you're getting some answers. Was thinking about you today and hope your visit on Tuesday goes well. Jennifer

[okiesandy]

Dana,

Dr. Brackmann does mid fossa and and has a great record of hearing preservation. I don't know about the facial nerve thing. Maybe that is the reason he suggested Translab. or it could be the size. If you will look for Karissa's posts on this site she will tell you how her hearing was saved at HEI. She is really an angel with a lot of information. Just time Karissa in the search part or email me and I will give you a couple of email addresses. All you have to do is call Dr. B. and ask him these questions. He will give you the real scoop. I have found that he talks with so many people he needs a little memory jog once in a while.

[kristin]

I just love it when a doctor is so humble that he would suggest someone besides himself for treatment. I think that asking the doctor "Where would you go if it was you?" is such a good question to ask.

[wind6]

Hi Dana,
Your husband sounds just like me. I had perfect hearing before my retrosigmoid/subop surgery. My doctors were also puzzled and told me they had not seen a case like mine.....as it turned out the tumor wasnt on my acoustic nerve but my facial nerve. That explains why my only symptom was facial numbness. I do not know if there is any way to see the origin of the tumor or not but it might be worth asking if this could be the case with your husband.
I lost my hearing "after" I woke up from surgery and praise God, it is starting to come back. I now have low frequency hearing (so hearing aid will work for me) but still no high frequency. We are waiting till January to test me again. My doctors are very hopeful that my hearing will continue to improve.
On the down side you might want to ask about the damage that could be done with radiosurgery "if" his tumor is on the facial nerve. My doctors said it was fortunate that I decided against that and opted for retrosigmoid. A last thought, my paralysis is improving very well. All numbness is gone, my smile is coming back, my eye is beginning to tear again, and my headaches are completely gone. Hope this helps.       Sherry

[Mark]

Dana,

In your first post you mentioned that you were going to see a neurosurgeon who also did radiosurgery. How did that appointment go?

I would suggest that 30% chance of saving hearing on an AN that size is on the optimistic side. My AN was slightly smaller at 2.0 and I was given less than a 20% chance of hearing preservation by two docs who were very experienced in AN surgery. Additionally, the sub occipital route tends to have the greatest probability of surgical complications ( CSF leak, etc) and post procedure issues ( headaches). If hearing preservation is a priority then radiosurgery , probably FSR rather than GK, would have the best odds.

I do not understand Sherry's post about the AN being on the facial nerve and that being a problem for radiosurgery. That sounds to me like another surgeon who doesn't understand radiosurgery or is looking to create an issue in someone's mind unecessarily. Given that the facial and hearing nerve run adjacent to each other in the auditory canal, essentially EVERY AN involves the facial nerve being stretched around or otherwise intimately involved with the tumor. Thus, in every radiosurgical treatment both the hearing AND facial nerve are impacted by the radiation. The primary impetus behind development of the FSR protocol was to limit damage to and increase preservation of both cranial nerves involved with the AN. All studies that I have seen show facial nerve preservation at 99% with FSR, so the doctors comment in Sherry's post makes no sense to me.

Mark

[debora]

Mark,  You are so right about the percentage of facial nerve being preserved with radiation, that is why I went that route.  What they didn't tell me is the possibility of hitting the balance nerve.   Dana ask lots of questions and research research and research.  Your husband is lucky to have you looking out for him.  Deb

[becknell]

Actually, I've read that there is a higher rate of CSF leak with the TRANSLAB approach. There is a higher risk of headaches with the SUBOCCIPITAL approach, but many people have those approaches and have no problems. Also, I've read that the headache factor may be related to surgical technique, that certain techniques may reduce that risk. Our surgeon told us he sees very few suboccipital patients with headaches, and my husband didn't have any once he recovered from the surgery. All approaches have pros and cons.

[stein78]

I had a similar situation.  My AN was 2.5cm and my hearing was surprisinly good for a tumor that size, just very minor high frequency hearing loss. House said Translab, my Loyola doctor here in Chicago said Retrosigmoid.  The chances of salvaging any hearing was slim, but I had to give it a shot.  Translap allows for a more positive identifcation of the facial nerve.  With retrosigmoid they rely more heavily on the facial nerve monitor.  Some doctors will say that you have a greater chance of headaches and facial nerve problems post-op with the retrosigmoid approach.  But I feel that all depends on the experience of the team.  My Loyola doctor told me my chances of facial nerve and headache problems were the same regardless of the approach he used and he was right.  No headaches and my facial nerve is 100% perfect.  I did loose all my hearing as a result of the surgery, they had to remove a big part of my hearing nerve to get the whole tumor out.  But I feel great about my decision to go retrosigmoid.  If I would have went translab I would have always wondered "what if" I would have tried to save my hearing.  Best of luck to you!

[Rex]

I had perfect hearing on my AN side when I was diagnosed with a 3.2cm AN.  My surgeons (Dr. Jackler & Harsh @ Stanford)  along with the House Ear Clinic and UCSF recommeneded translab.  Dr. Jackler said if I wanted to take a shot at saving my hearing he would do the sub-occ approach, but it was very unlikely.  My surgeons told me that in their experience there was a higher incidence of persistent post-op headaches and that in general patients seemed to tolerate the translab approach better.   I was told facial nerve preservation was no difference between the two approaches.  Dr. Brackmann told me there was no chance of saving my hearing with sub-occ because the tumor was too large.  In the end I decided on the translab approach since I was given virtually zero chance of hearing preservation.   After surgery, Dr. Harsh told me the AN was extremel sticky in the IAC so the only way to remove it was to also cut out the nerve.

Since your tumor is smaller than mine, there may be some chance of hearing preservation although 20% sounds high.  I would double check to see if your surgeon was quoting the rate for all sub-occs he does or for AN's of similar size to yours.  Your AN is too large for middle-fossa which is the approach that has the best chance of hearing preservation.

[nannettesea]

I, too, had near perfect hearing in my right ear.  From what I hear, the House Ear Clinic is world-reknowned, and I spoke to both the neuro-otologist and neurosurgeon before opting to stay in WA due to the high expense of going out of state.  I was very impressed by House docs, but I saw/had surgery with a great doc at U of WA. 

I opted for the trans-lab and lost hearing because they said it was the least invasive, didn't recommend either the sub-occipital or middle fossia because they were more invasive and complicated, and only about 30% chance of saving hearing anyway.  Turned out my particular tumor was stuck to the facial nerve, wouldn't have been able to save my hearing anyway, so trans-lab was the best way to go.  Surgery still took 8 hours.  I also had much dizziness prior to and after surgery, and they thought this approach would cut all the vestibular nerve fibers, which were causing my problem.

I would find out how many surgeries these docs have performed, what types they've done, and the outcomes.  I've heard sub-occipital is more risky, people can have headaches, but one woman I've been communicating with had it done here in WA and had great results.  No hearing loss, saved balance nerve, she's in great shape.  Every individual and tumor are different, that's the tricky part.  Just be sure you have a very experienced team is what I recommend.

Best of luck to you.
Nan

[Mark]

I would agree with all of Rex's comments and add that one of the surgeon's I was referring to was in fact Robert Jackler as well. He was at UCSF 4 years ago when I was exploring treatment options and had performed over a 1000 AN's in his practice and is arguably one of the most academically published on AN's out there. At least that would appear to be the case based on the stack of his papers that he gave me after my appointment  . He was working for years with a Dr. Pitts at UCSF and now he works with Grif Harsh or Steven Chang at Stanford. All world class neurosurgeons. As an aside, Jackler was one of the docs unfairly ( my opinion) cast in the Hall of Shame over on the AN archive site because he was perceived as anti radiosurgery. While he was when I saw him, some folks might find it interesting that as of last year he was training on the CK with Dr. Chang. I have no idea what his parameters are for recommending one over the other, but I think it is good to see highly regarded AN surgeons embrace other options to improve patient outcomes. In my view, this is more likely to occur in teaching medical centers than docs in smaller community hospitals where the financial aspect is more dominant

Mark

[dgrummer]

Thank you all for your help.  We saw the neurosurgeon this morning and left feeling very good.   Our surgeon does both GammaKnife and conventional surgery.  He truly feels that in the future radiosurgery will change the way they treat AN’s – but for now he recommended against radiation for us.  He was concerned with the size and position and the potential for damaging good tissue.  We were uneasy about radiation – so we had pretty much ruled that out anyway.  I understand many have had good results – but we are comfortable with our decision not to follow that path.

He quoted less of a chance to save the hearing – but also said that if there was a 10% chance to save some – wouldn’t we want to try – we agreed.  It was his opinion that the retromastoid approach was better suited for the tumor of his size and location because he will have a full view of the entire tumor and a better view of the brain.  With all this talk about nerves and such – I forget there is still the brain there and his tumor is compressing it.  While he did say translab was better to see the facial nerve – he’d rather risk the facial nerve than not be able to see as much of the brain and cause a stroke – although that is very unlikely. That seems logical.  Still – he emphasized the chance of saving the facial nerve was very good with both approaches –almost equal.  Giving my husbands lack of symptoms he was hoping that meant it was not too invasive and that it would come out easily – but of course couldn’t say for sure.  So in a nut shell – even if we weren’t trying to save any hearing (which we understand is unlikely) he’d still recommend the retromastoid approach because of the proximately of the tumor to the brain.

I did ask about headaches and mentioned something I had read from Dr. Friedman that they thought some of the headaches were caused from the exposed dura coming in contact with muscle.  He responded by saying he always reconstructs the area and does not leave anything exposed.   He said that many have found covering the exposed area cured the headaches.  So we’ll have faith that this won’t be an issue.

He stated they have extensive experience with the reromastoid  approach and we feel very confident they will do a good job.  They said they together (ENT and Neurosurgeon) have treated over 100 with this specific approach. 

While I think we’d all agree no one is more experience treating AN’s than House – but they mainly do translab– which we are now leaning against.  More importantly neither of us are real excited about the idea of fighting insurance and traveling that far away from home.  We have a 9 year old daughter and I can’t imagine going through this and having to leave her here in Arkansas.  If something did happen and she wasn’t close by her daddy – I’d never forgive myself.

We will be scheduling the surgery for sometime after the first of the year. 

I think the thing that makes this so difficult is that we are all searching for the RIGHT answer – the problem is there is no one right answer that fits everyone.  Every person and every tumor is unique and we each have to find the answer that is right for us.  My husband feels very good and much calmer about the whole thing.  We’ve spent much time in prayer asking that our choice of treatment and Doctor be obvious to us and I truly believe the calmness my husband feels is God’s voice – so we are happy with our decision.   

Again – thank you all for your thoughts and prayers.

dana

[becknell]

Hey, Dana, I'm glad your visit went well and that you and Rob both seem to feel comfortable with things. You're right in that you just have to weigh it all and decide what's best for you and your life and not anyone else. The decision-making process was the hardest part of the whole AN journey, I thought. Now, I hope you both have some relief in having a decision and can get some peace. Take care. Jennifer