ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: sharonov on July 02, 2009, 02:19:48 pm
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Dr. Friedman phoned me today. After talking with him for awhile I said I was considering using the Skull Base Institute and he asked why--in other words, was I sucked in by their website. I said that I had been influenced by people on this board plus the website and the doctor's assertion that he had never lost a facial nerve.
Dr. F. then mentioned that at the House Clinic they are treating several patients that had been screwed up by Dr. Shahinian, had the facial nerve severed while leaving the tumor in place, and a few other bad things. He was a bit vitriolic, but if what he says is half true I don't blame him. Now I'm back to square one.
Oh, at least House takes Medicare. They're "non-participating" but the end result is I don't pay anything. That's a good thing.
But I'll gladly pay if my results will be good.
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I really don't envy anyone during the decision-making process. I understand now why posties say that is even worse than the surgery period itself!
In addition to the fact that all doctors believe in their own methods, the vast majority of us patients will only ever experience one surgery with one team of doctors. Therefore, we can't offer first-hand comparisons either, as we only know intimately the one experience we happened to have!
I know you are doing great research and looking at very good options so I'm sure all will be well for you. Meantime, I feel for you trying to figure it all out. I remember all these swings well.
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Sharon ~
This is, indeed, a depressing turn of events. I'm not well-informed about the statistics for SBI and Dr. Shahinian but Dr. Friedman seems to be almost belligerently hostile to endoscopic surgery - to the point that I wouldn't take everything he stated as the 'gospel truth'. You have to remember that most doctors, especially surgeons, are always hostile to any radically new surgical procedure. It's taken years of positive outcomes for some surgeons to accept irradiation as a valid treatment for smaller acoustic neuromas. However, because this decision is so critical, I would not be shy about confronting Dr. Shahinian with the statements Dr. Friedman made to you regarding endoscopic surgery. This is too important to worry about ruffling a doctor's feathers. You might also consider asking the doctors at HEI their opinion on endoscopic surgery. In Dr. Shahinian's case, if he is the least evasive, dismissive or can't cogently explain why another doctor would make these kind of statements about endoscopic surgery for ANs, you would have to seriously re-consider your original, hard-won, treatment decision.
House Ear Institute has a good reputation and would not be a bad choice. However, no doctor or institution, no matter what surgical approach they may take, can guarantee the outcome of this kind of surgery, which is always challenging, to say the least. Endioscopic AN removal surgery does seem almost too good to be true, which sends up 'red flags' to me, but at one time, surgeons used a hammer and chisel to open up the skull of an AN patient and excise the tumor. This was 100 years ago and yes, the patient almost always died. Now, we have the MRI, microsurgery and radiation to safely treat acoustic neuromas. One day, every surgeon may embrace the procedure, as they have for other operations, and the the surgical procedures used today may seem antiquated. However, we live in the here and now and you have to choose what's available and what seems to be the safest procedure with the best chance of success - for you. No one else will have to endure the consequences of whatever surgery you choose, including Dr. Friedman, Dr. Shahinian - or anyone posting here.
Take your time, don't be shy about seeking and getting honest answers and of course, know that we're all supporting you as you struggle to make this decision - again.
Jim
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Sharon,
I am so sorry....that is indeed a bummer if true. I spoke with Dr. Brackman this morning from House. He is calling me back on the 13th as he is off to meeting in England. I did not mention SBI to him, but I will and see what kind of reaction I get out of him. Am curious what he might say - he is so calm but confidant.
Cheryl
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I have to say, I find it tacky when doctors speak that way. For the record, House also produces facial paralysis and chronic headaches. Ask LADavid or Cap't Deb. If you pick out the worst cases, anybody looks bad. What is important is how likely is it to happen to you? I bet the rates at SBI compare well to those at House.
At least you have time, whilst perambulating in the Cotswolds, to think it all over at your leisure. 8)
Steve
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I said that I had been influenced by people on this board plus the website and the doctor's assertion that he had never lost a facial nerve.
This is one of the reasons docs don't always like patients to get involved in chat rooms and/or search the web.
That said, although I've heard absolutely wonderful things about Dr. Friedman, I'm with Steve. Doctors shouldn't "bash" other doctors - at least not by name; totally inappropriate IMO. I know that my own doctor, Battista, has personally had many patients who had surgery with other doctors and they have come to him for help for some resulting "issues". However, he never mentioned any other doctor to me by name.
As I said in one of my previous posts, Sharon, I'd be very cautious of any doctor who makes an assertion like never losing a facial nerve. No doctor can guarantee anything. They all do their best, but every patient is different.
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I love this board. You all make me consider the situation from different angles.
At this point, every doctor I've spoken with has said that the odds of saving my facial and balance nerves are 99% given the size of my tumor (under 1.5 cm all measurments.) The point at hand now is whether or not I can save any serviceable hearing on the affected side. Shahinian just said it was unlikely given that it's a "class 2 tumor" and I've already lost so much hearing in the higher ranges--he didn't give a %age; Friedman gave me 40%, which I had found in other literature for the retro-sigmoid approach; Battista was vague because he hadn't taken the time to read my films until I came in.
I know that nobody in the world wants to lose any hearing at all, so I hesitate to say that I want it MORE!! I will say that I've noticed some people are more visually oriented--friends in my building (I live on Michigan Ave. in Chicago) go to the Art Institute all the time and rarely go to the symphony, which is also on Michigan. I never miss a concert at the symphony--I'm there once a week, either as a paid patron or a volunteer, and I only occasionally go to the Art Institute. Music is incredibly important to me. I sing professionally ( at an extremely low level--weddings, funerals, retirement homes) but it gives me immense pleasure. So, oh boy will that be changed.
More research last night (soon I'll lose my eyesight too!) found an abstract that said endoscopy had less of a chance to save hearing. Oy.
Sharon
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Similarly, I don't think we should bash Dr. F based on hearsay. He did not bring up Dr. Sh by name; he was responding after the patient brought him up. Dr. F may have been irked to hear the facial nerve assertion if he knew it not to be true. Or maybe he had indigestion from his lunch.
I know Dr. Sh has 100% facial nerve preservation based on a series of 112 patients, if I remember correctly. House quotes based on studies of over 1,000. They may have understandable professional differences that they are passionate about -- in fact, I hope they do! I like my professionals to be interested, involved and passionate!
I do not know Dr. F so am not in a position to defend or crucify him, but from what his patients say about him, I think he's earned the right not to be totally thrown under the bus! In my experience with other doctors at House, they spoke highly of the other surgeons I was dealing with. They said they had "no magic" but were confident they could do "as well or better" than others. I found that very measured and not over-promising at all. I also think SBI has provided good results and I'm sure less-invasive methods will be a wonderful development for many patients.
Personally I'm sure I say things about other ways of doing my business that I would feel uncomfortable turning "public" in fragments, without the listeners knowing what I was responding to when I said it. It's important to know the context in which things are said -- he was responding to what a patient said based on her knowledge, and he may well feel that he has more knowledge and some things that need to be pointed out. From what the original poster said, he was not initiating a "bash" of someone -- he was responding to her bringing up that person and statistics that he may have known or felt to be untrue or incomplete.
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I never miss a concert at the symphony--I'm there once a week, either as a paid patron or a volunteer, and I only occasionally go to the Art Institute. Music is incredibly important to me. I sing professionally ( at an extremely low level--weddings, funerals, retirement homes) but it gives me immense pleasure. So, oh boy will that be changed.
Sharon .....
I, also, never miss a symphony concert and am a singer. I was petrified before surgery, knowing that I most likely would lose at least more of my hearing (had already lost 20% pre-surgery). Finally realized that in the "grand scheme of things" losing some hearing in one ear would be less traumatic for me than some of the other results that can occur. I did lose another 60% (now have 20% boosted with a hearing aid) and adjustments have been made. I am still struggling with loud music (sets the hyperacussis off), but I am back to singing ..... sure it no longer sounds the same, but it is amazing how the brain can adjust and compensate.
Clarice
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I love this board. You all make me consider the situation from different angles.
It does that. I continue to see things in new ways from hanging around here.
I sing professionally ( at an extremely low level--weddings, funerals, retirement homes) but it gives me immense pleasure. So, oh boy will that be changed.
I'm not sure that has to change so much. There have been several on the forum who lost hearing and continue to sing. Brian Wilson of the Beach Boys was SSD. Besides, if you have already lost substantial hearing, you are already singing with mostly one ear.
Steve
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It's important to know the context in which things are said -
I think that's right. No one statement on one occasion should be the basis of a treatment decision. We have to gather lots of information from various sources, and form a big picture for ourselves of how the various options before us shape up. Then pick one and go for a ride and see how it turns out.
Steve
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Sharon ~
Let me add that on my first consult with the neurosurgeon I eventually hired to remove my AN, I mentioned that I'd been considering HEI. To my (pleasant) surprise, he had high praise for the doctors there, which impressed me. I also mentioned SBI and endoscopic surgery for AN removals, which was quite new, then (2006). He confessed that he knew nothing about it and would ask his associates for more information. The next visit, he said that none of the doctors he had consulted offered any useful information on endoscopic surgery for acoustic neuromas. He was skeptical about the approach - but said it might be feasible. To put this context, you have to remember that this was 3 years ago. Because of the scant information available and the fact that SBI is 3,000 miles away from my home (as is HEI), I opted to go with a local neurosurgeon, which turned out to be a good decision. He did an outstanding job and I fared very well with both his debulking surgery and follow-up irradiation.
Doctors are human and have personalities, just as we all do. Dr. Friedman may have simply been annoyed by the claims of SBI and Dr. Shahinian - or he may just be defensive when would-be patients are considering going with another institution using a competing surgical approach that he doesn't perform. This is why you can't base your surgery decision on the possible biases of one doctor, as fine a practitioner as he may be. Dig for statistics and consider every possibility. Frankly, endoscopic AN removal surgery seems to be a viable alternative to the conventional surgeries available. Were I diagnosed today, instead of 3 years ago, I would have to very seriously consider it as a means of addressing my AN.
Again, don't allow any doctor to sway you to or from a procedure you feel confident with, be it endoscopic or 'conventional' surgery - at HEI, SBI or anywhere else. It's your call.
Jim
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Sharon,
Am I understanding correctly that you want to preserve hearing? Why don't you run a thread seeing if you can get past Shahinian patients and see if anyone retained their hearing? It is worth a shot. I know the endiscopy is much less invasive but what is his hearing retention rates, I wonder? Also did you have an ABR and and ENG. I have not but was told by Dr.Smouha and then confirmed by Dr. Brackman, that these two tests would hone in on which part of the vestibular is affected and also if it was affecting cochlear. This will give them a more realistic idea of if I can perserve hearing through surgery as mine is small but deep in lateral portion. So the stats I have been getting up until now really don't mean anything until they get this further data - and it took my 4th consultation for someone to point this out to me. (ie. it may not be very possible in which case I will watch and wait)
Hang in there!
Cheryl
Cheryl
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I'll have to phone my original neurosurgeon since I don't have any idea what an ABR or an ENG is! Would I know if I'd had one? :D
The placement of your tumor makes it more difficult for you........maybe. I don't know. Mine hardly goes into the ear canal at all. Oh well, I have friends coming over to watch fireworks, so I'd better get away from this computer and stop obsessing.............
Sharon
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Sharon ~
FYI: ABR is the acronym for Auditory Brainstem Response. A test for hearing and brain (neurological) functioning. ENG is the abbreviation for Electronystagmography. (I dare you to say that 3 times, fast). A group of eye-movement tests that look for signs of vestibular dysfunction or neurological problems by measuring nystagmus - a type of involuntary side-to-side eye movement. I've never had these tests but they obviously have some value.
Jim
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Hi Sharon,
Why don't you PM Laura (allegro17). She had endoscopic at SBI in April. She had a surgery update place online (the status) but I'm not sure if she's kept that up to date. I don't know if this will help, but maybe it will.
Keri
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ABR is the acronym for Auditory Brainstem Response. A test for hearing and brain (neurological) functioning. ENG is the abbreviation for Electronystagmography. (I dare you to say that 3 times, fast). A group of eye-movement tests that look for signs of vestibular dysfunction or neurological problems by measuring nystagmus - a type of involuntary side-to-side eye movement. I've never had these tests but they obviously have some value.
I had both of these test when determining what type of surgical procedure and they confirmed that my vestibular function was completely destroyed and I have very little hearing function, I had lost 80% of the useful hearing based on the normal test. Since I was having facial nerve issues as well, those test went a long way helping me decide on trans lab as the procedure to remove my AN.
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This is the best thread yet! Just poked around one last time before going to Boston, and all this information is just overwhelmingly excellent. I was very tempted to go with SBI, but had to re-mortagage the house to do it, and although my husband was ok with that, I was not. The thought of trying to convince the insurance company, who were "absolutely not, cannot happen" after many phone calls to my case worker, spend months writing letters explaing the difference between the surgical procedures, etc. etc., was just too much for me.
I also think Laura would be the best person to talk to, she still has the patient page on "thestatus.com", but has not updated it. However, it has her gmail address listed. Although, that's Laura, and this is you, and every outcome is different (I heard and soon will find out).
I do believe the recovery is quicker, due to the less invasive procedure. Outcomes? I think they are similar to other good/excellent surgeons with AN experience. Yes, he is a plastic surgeon, but that doesn't mean lipo and b--b jobs, reconstructive facial surgery is extremely complex and involves all our favorite nerves, so that was not a turn-off for me.
Good luck, I am off for my surgery at Tufts tomorrow. Unfortunately also don't know anyone who had it done there to "grill" about it. Have to say that my doc is also not impressed with Dr. S and the whole endoscopic procedure, but I also believe, as time goes by, they'll come to embrace it if it reliably produces good results. He is also not a big fan of this or other patient forums, he thinks you hear more from people that had not so good outcomes and need a place to vent (so to speak). So yes, they all have their bias and opinion, in the end you have to go with your own.
Best wishes, Helga
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Glad to read your message. If your doc thinks that this forum is only for people with bad experiences, then you should mortgage your house and run to Shahinian. I've heard from 5 people who used SBI, either by PM or on the board, and all sing his praises. You'd think if he were such a quack that somebody would be here crying and dissing him.
For me, I have the $$ but both my husband and I are retired and with the economy & our losses in the stock market we are really careful and scared, as there's no way to make the money up. We're young 67s and very healthy and able to work, but who's going to hire us? People in their 50's are being rejected because of age, unless they're nuclear physicists or something which we're not.
On the other hand, as my son says, "if you have any one of the list of possible side effects, you'd pay the fee to get back to where you were and it would be too late." Meanwhile the facial pain that was driving me out of W & W mode has abated so I'm back to happy denial. Also, there's a slightly better chance of retaining what hearing I have left in the AN ear if I go the big-cut-in-head route, so that is also complicating matters (40% vs. 12%).
Sharon
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Sharon, did Shahinian give you any statistics for what hearing preservation he has been able to give other patients through endo? I have read many post happy with his outcome and happy with recovery time, but I don't think I have seen anyone who has preserved hearing and I know that is one of your big issues. He seems to have same results statistically with facial nerve preservation and tumor removal - what about with hearing? Also, endo is only done through retro approach,right? and not middle fosa, so already there is a slightly decreased chance of preserving hearing.
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Yes, Shahinian may only do retro-sigmoid. I can't do mid fossa anyway because I also have the Trigeminal Neuralgia, which has to be handled retro.
He said that I have a "class 2" tumor with a significant hearing loss already. If I had a "class 1"--namely a smaller tumor (less than 1cm?) and not much hearing loss already, I'd probably retain what I have. Boomer, with a smaller tumor, kept her hearing, at least so far.
Did you talk with Brackman yet?
Sharon
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Not yet, he said he would call when he got back on 13th which is today but I emailed him this morning because I had the ABR test on Friday and don't have the report yet and I have the ENG scheduled on Wed, so I told him I should have both reports on Friday. So I don't think I will speak with him before Friday since he wanted both tests to help determine hearing preservation stats for my AN. I will keep you posted when I speak to him. If he emails me, I am going to ask him about endo.
Cheryl
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I can almost assure you that Dr. Brackmann is not going to be a lover of endo!
He likes a good amount of access to where he's going. This came up a couple times while I was out there -- I was already in his hands, not decision-making, but they did the double-surgical-approach way on me to ensure a safe approach -- and even regarding having my head shaved, I joked to the doctor who was shaving it to "not take much" and he said something to the effect of, "Not with Dr. Brackmann! He likes a good clean area to work with" :D
(Dr. B also sent me home from a very difficult situation as a H-B 1, never even any temporary paralysis, and I get lots of compliments on my combover -- you totally can't tell what's underneath! -- so I'm thrilled with him. But I am doubtful that you're going to find him in favor of a teeny skull opening! ;D )
I say, no point asking a Ford dealer why you should buy a Honda. Or vice versa!
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Great analogy--except, when my husband was facing prostate surgery the guy who had been doing open cuts for 30 years spoke highly of the robotic (DaVinci) and the guy at Rush who does them. He admitted, "I do an excellent job on what I know. I just don't know and haven't been trained on the DaVinci."
I e-mailed my neurosurgeon here, James Chandler, who just happens to be one of the organizers of the upcoming symposium. He said that, though he is the only one at Northwestern who's trained in endoscopy, it wouldn't be appropriate in my cast (???). I have an appointment to see him the week before the symposium and will ask him what he means. I also want to find out why he talked only about de-bulking the tumor rather than removing it completely as Dr. House advises.
Sharon
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Sharon
I have to commend ANY doc that says "I don't know" and at least he was honest with you.
Debulking is usually done (actually, there is talk of this being the "new" standard of AN surgeries but hoping at the ANA symposium, we can learn more about it)..... as AN's tend to be "sticky". If they debulk (hollow out) the AN, there is less chance of damage to the nerve... then, if needed, they may recommend radio-treatment for the remainder of the growth.
Jim Scott is da man when it comes to debulk/radiation and you can check his past posts where he has discussed in length.
hope this helps.
Phyl