ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: TR4guy on August 18, 2010, 05:28:01 pm
-
So . . . .
I had a neurosurgeon . . . a fairly experienced one . . . tell me "No. We can't do the translab approach because your tumor is too large."
That doesn't jive too well with what I've read here.
Anyone care to comment on such a claim, or share your success story?
Thanks in Advance,
Scott
-
Hi Scott!
Wow, you do have a big one. I had a big one too and they told me the same thing, that a translab wasn't possible since mine was 3.1cm.....although I'm sure people have had it done.
Good Luck
Karen
-
Hi Scott!
Wow, you do have a big one. I had a big one too and they told me the same thing, that a translab wasn't possible since mine was 3.1cm.....although I'm sure people have had it done.
Good Luck
Karen
Thanks for the response Karen,
So, did you do the retrosig approach, or, seeing as how you went to Skull Base Institue, did you go with laproscopic surgery?
-
Hi Scott
I had translab for a large tumour. Size was the reason I had no other option and the fact I had lost most of my hearing anyway. I have mild Facial weakness - currently 3/6 on the HB scale and showing signs of improvement, but I would consider my surgery a success even though I had a CSF leak as well. They say translab is a better approach to preserve your facial nerve but I have to say that I think it depends on your tumour and where it is situated in your head. I still have a sliver of tumour left on my facial nerve and my surgeon has made sure this won't grow again by cutting off its blood supply. I'm happy with my recovery and found it relatively easy after the first couple of weeks....but everyone on here is different.
Good Luck
jacqui
-
I've got my ANA infomation packet here in the mail today.
I'm going to quote something from one of the booklets:
"Translabyrinthine Approach: may be preferred by the surgical team when the patient has no useful hearing, or when an attempt to preserve hearing would be impractical."
[later, in the same paragraph, it says]
"Any size tumor can be removed with this approach"
-
Then there's your answer!
I always thought the bigger ones WERE done with the Trans Lab approach.
Good thing you sent for the info, :)
Welcome,
Maureen
-
So does it seem like a fair conclusion that the aforementioned surgeon was incorrect with his statement that mine is "too large?"
I suppose he could have been oversimplifying things for me . . . and the details about its location or something else were the reason he didn't want to do translab.
Even if that were the case though . . . I'm not really thrilled with the idea of a doctor who wants to over simplify things for me.
Kind of frustrating ...
Scott
-
My first thought was with Moe - I thought that the bigger ones were always done Translab. I had a very large tumor & had the translab - of course, that was almost 15 years ago so things might have changed...
K ;D
-
TR4guy,
Why would you want Translab to begin with? Worried about facial nerve?
Retrosigmoid is for larger tumors is what I read on the web. I thought the only real draw back to Retrosigmoid is the head nerves and musles that have to be cut accross that add a 10% chance for cronic headaches.
I don't like the Translab cuz its a total wipe out to your hearing bones. And 20-30 years could see gene or nerve reconstuction. May get my hearing back when I'm 60-70.
Can always hope. lol
-
TR4guy,
Why would you want Translab to begin with? Worried about facial nerve?
Retrosigmoid is for larger tumors is what I read on the web. I thought the only real draw back to Retrosigmoid is the head nerves and musles that have to be cut accross that add a 10% chance for cronic headaches.
I don't like the Translab cuz its a total wipe out to your hearing bones. And 20-30 years could see gene or nerve reconstuction. May get my hearing back when I'm 60-70.
Can always hope. lol
Interesting view point you have there.
Maybe some other folks will answer your questions.
I can't not answer some of your questions though:
Worried about facial nerve? Heck yeah. Are you not worried about it?
Judging by your signature . . .2.8cm isn'' exactly little, and you've already got some facial numbness going on.
I don't know . . . but one of us is obviously in the minority here.
SSD vs facial paralysis and headaches.
I know the chances aren't high for facial paralysis and headaches. . . but the consequences are very high.
Man . . I feel so bad for all those folks who have the chronic dibilitating headaches.
That just sounds terrible.
Me . . . heck . . I'm already a good way toward SSD. going all the way there would suck, but I think I can deal with it a whole lot better than I can those headaches.
Scott
-
Scott -
honestly I don't know the answer to your question, although I should.
My AN was approximately 3 cms at the time of my surgery and I had the retrosigmoid approach. No headaches for me; slight facial nerve paralysis for 1-2 days post op; ended up SSD, now sport a BAHA on my head.
Your doc may be oversimplifying things for you like you suspect, but I'm not sure. IMO, you should push him for a more definitive answer. You need to have complete faith and trust in someone who will be operating on your brain, and if you aren't comfortable with asking him to clarify his position, do you really want him inside your head?
My neurotologist was utterly upfront and completely honest with me - and answered every question I had (in hindsight, even the "dumb" ones) with patience and in terms that I could understand. I made sure I grasped everything he told me and that I was comfortable with his explanation of everything. He was accessible by phone, as well as in person, and believe me I took advantage of that. You don't want to go into something like this without having satisfactory answers to your questions.
Just my thoughts,
Jan
-
Scott
I panicked about facial paralysis went I had surgery, Im only 38 and was just in a new relationship when I was diagnosed. After the initial reaction people just get use to it and so do you. I would love my face back but if I don't get it back I won't be upset. Being SSD isn't the end of the world either...you get use to it and in the USA you are lucky to get Baha's and things...I have been told I can't have anything like that.
I don't think is any point in worrying about what you don't want to go wrong because you really get no choice with surgery. The surgeons do their best, hence the reason people on here always say do your research and go with whats best for you.
Jacqui
-
Since I'm new here, what is a BAHA?
-
A BAHA is a bone-anchored hearing aid.
Check this out http://www.umm.edu/otolaryngology/baha.htm
You'll find more info @ www.cochlearamericas.com - and here on the Forum. Just search BAHA.
Jan
-
Scott,
My team was actually planning to do different routes on on me, translab and retro sigmoid. The neurosurgeon felt that in my case, based on the tumor position, that this would give him more room to work. I would try following up with him for clarification via email. I engaged my docs in semi-regular email pre- and post-surgery in order to establish a stronger relationship and to address questions. Now six months post I provide them significant updates between appointments if it seems warranted. I think this helps them establish a more robust case history.
You do want to be confident in your surgeons. Don't be hesitant to push for meaningful explanations.
-Tod
-
From someone who has been this way for quite a while, I would take most of the other stuff over the headaches that people describe here ANY day of the week. I had HORRIBLE headaches before my surgery and thought that surgery relieved everyone of their head pain. It wasn't until I got on here that I found out that some people get debilitating headaches AFTER surgery - my heart goes out to them. HANDS DOWN, I would take SSD over headaches anyday and really, my face may look a little funny, but I can still function, do my day to day stuff and be a mother to my girlies!!
K ;D
-
Here's what I've been told. Hopefully it is correct.
Usually....the facial nerve is on the front. Side of the tumor. (Usually). Approaching the tumor from the rear means the facial nerve and its involvement with or attacment to the tumor is more difficult to ascertain.....since the tumor is between the surgeon and the facial nerve.
Going translab means that the approach is along the hearing and facial nerves which run parallel to each other. So in this approch, the facial nerve vs the tumor can be viewed immediatly, regardless of their relative positions.
Scott
-
I think I'm coming late to the party, here (as usual...), but my AN was 3cm and I had Translab.
I had no hearing loss at all prior to surgery, but decided I'd be willing to sacrifice that hearing in an attempt to spare the facial nerve. Turns out, the facial nerve was pretty well tangled up in there too, so it didn't quite work out as planned. However, I don't have headaches, tinnitus or any of the other things that I understand can be quite debilitating. I am SSD with a BAHA and I have facial paralysis, which I've since had a nerve graft for and am still working on a few more things. I still consider myself a success story. The issues I have do not keep my from doing anything I want to do. (alright, maybe I would like to blink all the way... ;D).
I was also under the impression that translab was the way to go with the larger AN's
Lori
-
One reason I heard that retrosigmoid is sometimes preferred for larger tumours is that access to the tumour may be better. With translab, the access/vizualisation may not be as good, thus meaning surgery to remove large tumours may take longer which increases risks on the table (associated with being under anaesthetic for so long, clots, stroke, nerve damage from being prone etc).
I had done some research before seeing my surgeon and wanted the translab as had heard that was best for facial nerve preservation and didn't want the risk of headaches from retrosigmoid. So as you can imagine, was a bit upset when he said the best approach for me would be retrosigmoid. This was because it offered best access due to the location and shape of the tumour. Wasn't because of personal preference of surgeon (does both types). I was lucky in that had good surgeons and despite 4cm size of tumour, that it was a regular shape and easy to separate from squashed facial nerve (2 months on, my face is back to normal and no headaches - and they removed the whole tumour).
If not happy with current surgeon's judgement, can you get a consult with any others and see what they say?
-
Hi Lamplight,
What you wrote is right on target for me. I have the same reasoning for not wanting to go retrosig.
And I actually have gotten some other consults lately.
Both of them disagreed with the idea that my tumor was more accessible from the rear or that it was "too big" to go translab.
One of them actually laughed and said "no, that's not correct. we can remove any size AN using the translab approach. we did a 5cm one earlier this year."
So, now I've got conflicting opinions from different experts.
Scott
-
Biggest AN I know of belonged to Jon (user name satman).
I don't know which surgical approach he had and his profile doesn't say.
Perhaps you should send him a personal message, Scott, and ask him.
Another suggestion. HEI (House Ear Institute) in Los Angeles has a huge reputation for doing AN surgeries - the docs there are the pioneers of AN surgery - and they will give you a free consult if you send your MRI to them.
Maybe you should get their opinion. Afterall, it's free and you are not obligated to go there for your surgery. You might get the answer you are seeking about the best surgical approach and then you could have your surgery locally.
Just a thought,
Jan
-
I was wondering what House would say also...
K ;D
-
Actually....house was one of the contradicting viewpoints.
I'm not sure if it is socially acceptable to name doctors by name...
But the surgeon I saw at hopkins said retrosig....cause mine was too big for translab.
The doctors I talked to at both House and Georgetown both disagreed. Not only about it being too big...but also that translab is the approch they reccomend.
Scott.
-
I'm not sure if it is socially acceptable to name doctors by name...
But the surgeon I saw at hopkins said retrosig....cause mine was too big for translab.
Scott,
It's okay to name drop, we do it all the time! Important to know who recommends what if other people are following (or lurking as we call it) any posts for info.
Wonder why the docs at Hopkins recommend retrosig. Big hospital, I would assume they do both approaches there. ???
Translab for the most part has little side effect of long term headache, as had been mentioned before, and facial nerve preservation is good.
(Although my case was different- the facial nerve and all it's branches were totally smashed and the nerve had to be cut to get the tumor. The AN was vascular i.e. bloody.They connected it back during surgery, just didn't take.)
So I would say my case was a success in the fact that I had no headaches, no stroke,or cognitive issues (except for the normal middle age woman thing!) The tinnitus you can't control, and my face is coming along too. (That's another thread- pre/post gracilis flap- need to update!)
So the journey continues. This is the hardest part, figuring out how to proceed. Hang in there ;)
Maureen
-
Well.... Okay. Naming Names is okay (Seinfeld reference anyone?)
It wouldn't be to hard to figure out anyway if you just dig through my old posts.
Hopkins works this way - you send in your MRI, the associated report and other relevant info. Then the department head (I believe it is Dr. Brem) then reviews your case and assigns it to one of the surgeons there. They contact you and setup two appointments on the same day. One for the neurosurgeon, and one for the ENT.
It was all very efficient and well prepared. I give them credit for that. Hopkins certainly does a good job with organization and preparing a patient for the appointments.
In my case - I was assigned to Tamargo for neurosurgery and Carey for ENT.
Carey is a really nice guy. I can't say enough good things about him. (plus one of his students was ridiculously attractive . . . a nice distraction)
Back to the point. Despite Carey's bedside manner and willingness to explain things to me and answer my questions (even via e-mail. Impressive)
He was still in agreement that the retrosig approach that Tamargo told me he was going to do was the best one.
I actually saw Tamargo first. Now, don't get me wrong, Tamargo doesn't have a bad bedside manner, but he's certainly not as personable as Carey.
He's all facts and action.
"This is what we are going to do and how it is going to work" and so on.
Which is fine. I can work that way.
As I've mentioned, I questioned him about Translab and he said emphatically "No. Your's is too big for translab." He might also have said something about the location and needing better access than can be had via translab. I don't remember that specifically.
I trusted him because he has a TON of experience with these things. He's been doing them for something like 15 or 18 years and has done well over 400 AN surgeries personally. (or so he told me) He works at Hopkins. He's supremely confident and probably with good reason.
No reason not to trust him right?
The first warning flag I got is when I talked to Dr. Carey and was talking about the possibility of leaving some tumor behind to preserve the facial nerve.
Dr. Carey said something like "If I know Dr. Tamargo, he will try very hard to get all of the tumor out if it is at all possible."
Hmmmm.... what if Dr. Tamargo and I don't agree on how aggressive to be in attempts to remove all the tumor?
More warning flags came along as I went. I will spare you the details about them as I know this post is already too long. (and I'm not close to done)
Why did they recommend retrosig? All I know is what he told me: "its too big."
If there were other reasons, he should have elaborated more. (wish I had a audio recording of the visit to refer back to) "it's too big" seems to be a minority opinion from all the other research and consults I've had.
I think he also mentioned something about it extending into the IAC . . . which meant that the ENT was going to have to go in there and drill out some bone to get to all the tumor. (go ahead - google intradural drilling and retrosigmoid approach . . . . more flags)
From what I can tell . . . . I think Tamargo only does retrosig. (one of my other consulting doctors said that's what he thought too)
Now . . . does that mean that the department head looked at my case and deemed a retrosig to be the right choice and so he gave it to the best man for the job?
Possibly. I don't know.
Whatever the case . . . for me personally, I don't want retrosig. I want translab. And at this point I don't want Tamargo doing the translab on me.
Georgetown recommends translab. Maybe I'll go there.
House recommends translab. Maybe I'll go there. (insurance is a concern since they are so far away from me)
Who knows . . . maybe someone else at Hopkins will do the translab.. They seem to be so stocked with superstar doctors, that I have a feeling they get pigeon holed into being one trick ponies. Maybe there's a superstar one trick surgeon there that does translab too.
Oh ... one other thing Tamargo said "we don't do Middle Fossa anymore for anyone. That approach is no good."
Hmmm.... House and other premier places still do Middle Fossa....
I doubt anyone is reading all this . . I know I type WAYY too much.
But if you are . . . please don't view my rejection of retrosig as a judgement on you if you did have or do want to have retrosig.
As everyone says . . . each case is different, and we all have to be comfortable with whatever we decide.
I've decided that for me, I don't want retrosig.
Sorry for the length folks.
Hope it doesn't drive you away.
Scott
-
Hi, Scott,
The majority of AN neurosurgeons were trained in retrosigmoid approach. Just a handful (HEI is one of them) do translab on any tumors, especially the tumors of your size. If the tumor was small and you wanted translab, maybe a neurosurgeon would attempt it. However, large tumor would make untrained attempt difficult and risky. So, they are just being responsible.
Another thing (and that was my problem) is location of the tumor. Most ANs grow downwards when they enlarge and involve lower cranial nerves. Loss of lower cranial nerves produce greater morbidity that even a loss of the facial nerve (fortunately, nowadays this is rare), so the retrosigmoid approach allows better access and view of the lower cranial nerves which improves the outcome. One of the neurosurgeons simply showed me on MRI film where the translab incision is and where is retrosigmoid. I could see for myself that with translab the neurosurgeon would have to work downwards to peel the tumor from the majority of the cranial nerves involved and his visibility would be obscured by the combination of the tumor plus scar tissue from the first surgery. Translab would have been inefficient at best and chances are great that the lower most end of the tumor could not be removed because it was unreachable.
By the way, most, if not all neurosurgeons have what is called "surgical personality", that is they are not very personable. This is no indication of their skill. To make it through training, they either have to be born with it or develop it along the way.
If you really want translab, you would be wise to go to somebody who can do it with a tumor your size SUCCESSFULLY . At this point, I know of only one place: HEI. That does not mean that nobody else can do it, just that I am aware of only them They developed translab as a method and have many success stories with a tumor your size.
Good luck in your quest!
Eve
PS Retrosigmoid can indeed produce horrible chronic headaches. I was "lucky" to have them for 10 years after my first surgery. I think you are wise to avoid them in the first place, especially since your hearing cannot be saved.
-
Hi Eve,
Thanks for the reply.
You write very well (I wish I could write as well as you do.)
You also seem pretty knowledgeable about this stuff.
My consultation with a surgeon at House backs up some of what you have said.
He said they recommend translab for me.
He also said that when done correctly, translab will give plenty of access to even very large ANs.
Lastly - He also said that there are doctors, including the ones he initially trained under, who did not do the translab in the proper fashion to allow access to large tumors. (and threw in the semi-marketing addition that "everyone here at House is trained to do them correctly.")
The Hopkins doc I saw has been doing AN surgeries frequently for the better part of two decades.
Maybe this "improved" or "correct" translab technique was developed after he was already removing bunches of AN's via retrosig.
As far as he is concerned, "why fix what isn't broken? I'm great. What I do works. why should I change?"
I don't know....that's just me projecting on him and may be inaccurate.
The Georgetown doc obviously has done them successfully.
He mentioned a 5cm AN they removed there at Georgetown earlier this year via a translab approach.
Your own personal story of the explanation as to why you went retrosig as opposed to translab is interesting.
What would you have done if a second expert, with just as much experience and training as the first one, had a different opinion?
As I said in one of my posts . . . I'd like to get them in a room and watch the debate.
Lastly . . .I'm fine with "surgical personality"
What I'm not fine with is suboptimization.
When one sub-group on a project does what is best to optimize their part of the project, without regard for the outcome of the project as a whole.
This could be shown by a neurosurgeon who has fabulously good statistical success for his surgeries . . . when measured in neurosurgery metrics.
Was all the tumor removed?
Were the other nerves preserved?
Were there any other complications during surgery?
And possibly - was there any reoccurrance or regrowth of the tumor?
Notice that only the last one has anything to do with the patient after the surgery is done.
If a neurosurgeon has a reputation for being "done" with his patients after surgery.... and any subsequent issues they have are not his problem and to be dealt with by other specialists .. . . .that's a bad thing in my book.
It only reinforces that type of suboptimization.
I mean, if he's ignorant of the post operative condition of his patients, how is he ever going to draw a correlation to the consequences of the surgeries he does?
And furthermore, how is he really going to be effective at judging what is best for the patient, vs. what is what is best for neurosurgery?
Sorry . . .. started to rant or preach there....
Scott
-
How frustrating what you are going through Scott!
My AN was considered med-large. They got the whole thing. My doc at Madigan Army trained at HEI and does the retro and translab approach (he doesn't use the mid-fossa).
Can you ask for a second opinion at Hopkins, will they do that? Or all they all trained to think like the doc who recommended retro?
Feel for you.....
Maureen
-
Can you ask for a second opinion at Hopkins, will they do that? Or all they all trained to think like the doc who recommended retro?
Feel for you.....
Maureen
I doubt they are all trained to think like the doc I saw.
However politics could possibly play a role here.
I'd tend to think Hopkins Neurosurgeons are achievers .. . . successful achievers with ambition.
Might not be a good idea to contradict the department head or one of the most experienced surgeons there.
I guess we will find out what they say sometime here in this upcoming week.
I'm going to have to tell them that I plan to go somewhere else because I don't want the retrosig approach.
Can't very well wait until the day before surgery to tell them.
If they counter with an offer to do the translab . . . we will have to have a very serious meeting that could get dicey.
It sorta leads them down a path that could be sticky for those currently involved.
I suppose there is some way for them to come out of it by saying that they still recommend retrosig as the best way, but that their translab specialist is top notch and can do the job as well as anyone in the world.
(once again . .I'm projecting possible future conversations here.... this is all imagination at this point)
Then their translab specialist . . . I'm sure he's going to have a tough time NOT contradicting the department head and the first neurosurgeon.
For him to agree with them and take "the company line," he'd have to say that the translab surgery he is about to do is not what they believe is best for me, and that it isn't as likely to work as well as what they first prescribed. I imagine that's a pretty tough thing for an accomplished neurosurgeon to say.
Whatever . . . . I'm sick of going over possible scenarios.
hopefully early next week I'll get some answers from Georgetown, House, and my insurance company and will take it from there.
Since I'm spilling my guts here on this forum . . . you will of course know the outcome soon afterwards.
I must say . . . it is very nice to have some knowledgeable people listen to what I've got to say.
My personal research into this stuff has gone 1000x farther than anyone who is close to me and there to support me.
I find myself educating them most of the time. (which is totally understandable. that was not a complaint. Just a fact.)
With you folks . . . we are on equal ground. I can talk about the details and it doesn't throw any of you for a loop.
That's very helpful . . . that you really do understand the situation and how it might affect me.
Thank you all,
Scott
-
Scott,
I am afraid I will start here a mutual admiration committee! ;D You are so incredibly perceptive on so many issues that I cannot even believe you are a newbie!
Good follow-up care is frequently a subject here. It seems to be dying in the days of declining insurance reimbursements and decreasing hospital stays. The surgeon is paid for the surgery and 3-months follow-up care. There is a direct incentive to spend less time with the patient after surgery. Unfortunately, follow-up care is no indication of the surgical skill either, just like the surgeon's interpersonal skills. The were many cases here of people who had wonderful outcomes but shabby follow-up care and people who had shabby outcomes but wonderful follow-up care. You just never know. There is only one place - HEI- where former patients had consistently excellent follow-up care without an exception but so many more got miraculous outcomes elsewhere and so-so follow-ups.
Some people complain that anything that is not going to kill you is conveniently ignored by the surgeons. They pay attention and jump to action only if the scar fails to heal, there is a fever (meningitis?) or CSF leak. Disability seems to the worst: the surgeons say the patient is ready for work in a few weeks when that is obviously not the case. On the other hand, they love to talk to the patients who they deemed to be "successes".
In my case, the first time I did not have a choice of the surgeons. I was referred and did not investigate any further simply because there were no other options and the tumor was huge. Only miracle could save me and it happened. Second time I was in W&W for 9 years and saw things change tremendously in the treatment of ANs. Now there were options (different types of surgery, different types of radiation and a hybrid approach - surgery followed by radiation). I investigated and interviewed many specialists which all disagreed by the way! One even refused to see me! I told myself that in order to be successful in my search, I would avoid being judgmental, hear and understand each person's point of view and ask why he is recommending this particular course of action. I tried to understand rationale behind the approach as well as its pros and cons. Each doctor who saw me contributed to my understanding o and that eventually lead to the neurosurgeon who could handle my "challenging situation". I am really grateful to all of them. I also participated in this forum and that was a lifesaver!
Good luck in your search.
Eve
-
Disability seems to the worst: the surgeons say the patient is ready for work in a few weeks when that is obviously not the case.
Not to get off topic here but . .. . (maybe I will get my first admonishment from a moderator!)
I've heard that about the disability thing. (Nickittynic and others)
Why is that the case?
Does it hurt the surgeons stats?
Do the insurance companies keep tabs on the surgeons and somehow grade their effectiveness by how quickly their patients get back to work?
(makes sense - the insurance companies are worried about costs.)
Scott
-
The majority of AN neurosurgeons were trained in retrosigmoid approach. Just a handful (HEI is one of them) do translab on any tumors, especially the tumors of your size.
By the way, most, if not all neurosurgeons have what is called "surgical personality", that is they are not very personable. This is no indication of their skill. To make it through training, they either have to be born with it or develop it along the way.
I respectfully disagree with both of these statements.
I don't know how the majority of AN neurosurgeons are trained, but I had a neurosurgeon who works with neurotologists who do retrosigmoid, translab, and mid-fossa. And from what I've read on this Forum, I don't think that only a handful of docs do translab. In fact, I would venture to say that most doctors discussed on this Forum do translab. The mid-fossa approach seems to be the one that is in the minority.
My doc does both retrosigmoid and translab, and the other doctor in his practice does translab and mid-fossa (he may do retrosigmoid also, but I'm not sure). Neither of these doctors trained @ HEI or worked @ HEI.
My neurosurgeon was extremely personable - one of the nicest guys you'd ever want to meet. I don't think neurosurgeons can be stereo-typed; nor should they be.
Not every doctor is for every patient. Sometimes you just "click" with someone and sometimes you don't. However, IMO, having faith, confidence, and trust in your doctor - or team of doctors - is crucial no matter what AN treatment you decide on - and the same goes for other medical treatments, also.
Scott, you definitely need to find someone you feel comfortable with. If a doctor gives you a "bad" feeling, my suggestion is that you steer clear and find one that you get a better vibe from.
While I certainly don't think that skill level should be overlooked in favor of a good bedside manner, it IS possible to find a doctor - or doctors - with both. Don't compromise.
Jan
-
I have been around here quite a while now and has it even been mentioned before that a dr won't do translab because of the size of tumor. Just interested if I am being forgetful. I do know that Gantz at Univ of Iowa does mid fossa and translab. I am not even sure with now knowing several of us U of I alumni that anyone has even had retrosig there.
Being a retired nurse and only at a small hospital but every dr I have been around has their own ideas and way with any kind of
health condition. One just has to hope theirs is the best way. Cheryl R
-
There is only one place - HEI- where former patients had consistently excellent follow-up care without an exception but so many more got miraculous outcomes elsewhere and so-so follow-ups.
Maybe I'm just over-tired tonight, or perhaps crabby, but I have to respectfully disagree with this statement also.
HEI is NOT the "only place" where former patients have consistently excellent follow-up care without an exception. I have NEVER had an issue with my follow-up care, and I have never stepped foot in HEI. I don't think that I am unique in this either.
Lots of us didn't go to HEI - but we have still received excellent treatment, including excellent follow-up care.
I'm glad that those who went to HEI are so happy with their choice. In fact, I think it's wonderful. However, lots of us didn't go there and we are no less happy - or well cared for - than the House alumni.
Jan
-
I must admit to having to give some thought to those assertions too.
I believe there is at the very least, a stereotype of surgeons not being very personable. Particularly Neurosurgeons.
I believe there is probably some truth to that stereotype, but there are of course exceptions. Possibly a great number of them.
Whether I'm right or not doesn't matter. It's just what I believe.
I can deal with a "surgical personality." What I don't like is overconfidence and inflexibility.
Judging the difference between justified confidence and overconfidence is a tough job though.
As for Translabs and House . . . .there is some middle ground here.
According to the ANA patient survey . . . something like 55% of microsurgeries are translab.
Clearly not everyone doing translab was trained at House.
I do believe that it was developed at House.
Isn't that correct? Didn't I read that somewhere?
As I mentioned in a previous post . . . perhaps the translab approach has been improved by the people at house.
And so what may be standard teaching around the country for doing translab isn't 100% up to date.
That would fit in with what the doc from House told me.
He was trained to do translab before he got to house. .. . and the folks he learned it from weren't doing it the way that house teaches them to do it.
Also - I would believe that neurosurgeons . . . aka brain surgeons.... learn the retrosig for a lot of other procedures besides AN. (or Something similar to it anyway)
On the other hand . . I bet all those ENT surgeons are trained to mess around with the mastoid bone and the translab approach area for their general training.
It isn't too hard for me to believe that brain surgeons are going to like to go through the brain (retrosig) and ENT's are going to like to go through the ear (translab)
Those are only generalities though . . .
Scott
-
There is only one place - HEI- where former patients had consistently excellent follow-up care without an exception but so many more got miraculous outcomes elsewhere and so-so follow-ups.
Maybe I'm just over-tired tonight, or perhaps crabby, but I have to respectfully disagree with this statement also.
HEI is NOT the "only place" where former patients have consistently excellent follow-up care without an exception. I have NEVER had an issue with my follow-up care, and I have never stepped foot in HEI. I don't think that I am unique in this either.
Lots of us didn't go to HEI - but we have still received excellent treatment, including excellent follow-up care.
I'm glad that those who went to HEI are so happy with their choice. In fact, I think it's wonderful. However, lots of us didn't go there and we are no less happy - or well cared for - than the House alumni.
Jan
Okay. . . hold up a second . . . let's not get too defensive here. :o
I agree. It was an amazingly bold statement that Eve made. . . and one that is certainly apt to be challenged.
Both of your statements sorta seem like they could be tainted by personal bias though.
On the plus side . . .it is nice that there are folks out there who are so pleased with their treatment that they want to defend the places they got care.
See . . . not all forum people are here to complain about their care!
So . . . Eve ..... What is that statement based on?
Was there some sort of formal study?
Or even an informal study?
Or is it based on your own personal research on this forum and other places when you were trying to find a place to be treated?
I gather post-op after care was an important factor in your decision....
And furthermore - how does one get good followup care from a joint in Los Angeles when one is in Jersey? :) (or Virginia ;D )
Personally - I sorta feel like going in and challenging the team at Georgetown with this post-op after care business.
If I told them it was important to me, and that I was concerned that the surgeons seem to be done with their patients after they are discharged ....
They might try and convince me otherwise.
Maybe I'm full of myself, but I have a feeling they would love to steal a patient from Hopkins, as it probably more often happens the other way around.
Scott
-
I did not go to HEI either and I am very happy with my choice. My recommendation of HEI to Scott is based on the fact that he has a large tumor, wants only translab and great follow up care. HEI has the expertise with large tumors, developed translab (nobody did more translabs than them) and no former patient complained about care there. This is in contrast to some great neurosurgeons (mine included) that are not so consistent. Some people in their hands seem to do really well and some people have all sorts of issues. Of course one can get good care and good outcome somewhere else. Who is arguing?
For my surgery I did not want translab and follow-up care was not important. That is why I ended up a few blocks form HEI and did not regret it. What is great for one patient will not work for the other and vice versa. I am just trying being cognizant of Scott's criteria for surgery and not recommend something that had that worked out beautifully for me but that happens to be a different situation entirely.
As far as ANA patient survey goes, it does not take every AN patient into account. It does not even take every forumite into account. I tried to fill out the survey but it would not accept it because I don't think it is designed for my situation at all but then ,again, my situation is pretty uncommon. I don't think one can take its findings and apply to the entire population of AN patients. It is certainely evidence but not absolute truth. May be translab took over as the surgical method of choice and I did not keep up with this development but until a few years ago retrosigmoid was the one based on my research and interviews. In fact, it was developed by my former ENT, Dr Cohen, a few years after he participated in my first surgery. This is very old and an improvement over suboccipital approach which is what I got originally. Retrosigmoid has been associated with chronic debilitating headaches, so it is possible that surgeons moved to translab as patients denounced retrosigmoid.
As far as more translab than retrosigmoid on the forum, I am not sure anybody can calculate how many AN patients on this forum for the past 5 years, let's say, had one or the other. This forum exists because people need help, support and information. Maybe more people who had translab need that? It seems unlikely, of course, but this AN forum is a subset of the entire AN population and I am not sure one can generalize any of the findings to the population itself.
Eve
-
I'm with Jan on her comments about the follow up care and don't think she's being defensive. I admit that I don't have all the statistics to back it up, but there are lots of places (and doctors) around that have excellent surgical skills and good follow up care. I had a few issues post op (not nearly as severe as many), but my doctor was great (and still is 2 years later) in the continual follow up care.
Patrick
-
I have to echo Jan's feelings here too. While I'm sure HEI is a wonderful place and people have had wonderful experiences there, people who choose other facilities have wonderful experiences also. It is a very personal decision and no one should be made to question their decision. Giving a personal opinion on a particular facility or doctor or procedure is one thing, but I think it's going a bit overboard to suggest that there is only one facility or one doctor that will ensure a good outcome.
I had an excellent team of doctors, an excellent facility and excellent follow-up care (as well as a great outcome!). I chose to stay local because I was concerned about follow up care and I wasn't convinced I'd be able to get that from clear across the country. That was my decision and it was right for me. I will sing the praises of my experience and my choices to anyone who wants to listen, but I certainly wouldn't suggest to anyone that if they go somewhere else they will have a less than favorable outcome. No matter where you choose to have your treatment, there is always a possibility of things not going as planned, but that's a risk you take with any surgery. I think we all need to be supportive of other people's choices, even if they aren't the same choices we made.
As a nurse, I will say that some of the best doctors I've ever met had the worst bedside manner. There are a lot of things that need to be considered in choosing a surgeon and I don't think personality should be the only factor. You have to look at the big picture. I was fortunate enough to have found a top notch surgeon who happened to also be a really nice guy. But if he had been a top notch surgeon with a personality like a wet dishrag, I wouldn't have written him off because of that. :D I like to think that those doctors never picked up the the social part because they were too busy studying! And for the record, my group of surgeons did translab and retro.
Lori
-
I did not go to HEI either and I am very happy with my choice. My recommendation of HEI to Scott is based on the fact that he has a large tumor, wants only translab and great follow up care. HEI has the expertise with large tumors, developed translab (nobody did more translabs than them) and no former patient complained about care there. This is in contrast to some great neurosurgeons (mine included) that are not so consistent.
Well - so much for being biased.... Seeing how you would recommend HEI to me despite the fact that you chose NOT to go there and were happy with your results.
As far as ANA patient survey goes, it does not take every AN patient into account. It does not even take every forumite into account.
<snip>
It is certainly evidence but not absolute truth.
That's a good point. It is a large survey, but I guess it is easy for us newbies to forget its limitations (self reporting, from ANA members)
Thanks for the perspective.
Scott
-
Here's the bad part about naming names . . . things being misconstrued.
For the record, while I did say that Dr. Tamargo wasn't as personable as the other docs I saw, he wasn't BAD.
He wasn't rough, abrasive, uncaring or anything else negative.
He just wasn't as exemplary as the other doctors I happened to have seen recently.
(excluding the very first neurosurgeon I saw at a local hospital. He pissed me off. It seemed like he just wanted to get rid of me because he knew he wasn't going to do the surgery. That's exactly what you need when someone shows you an image of what looks to be a third eyeball growing in the middle of your head: an uncaring dismissal with instructions to go see someone else)
Back to the point . . . my concern with Dr. Tamargo was that I had heard reports of his not being too involved after the surgery and so therefore I questioned his judgement on what is best for the patient's overall outcome as opposed to what is best for his neurosurgery outcome.
Scott
-
Okay - time to show my ignorance here: I thought there were three different surgical approaches used for ANs.
Middle Fossa - I don't have a problem with this one. (probably because it has been ruled out for me, so I don't pay it too much attention)
Translab - I think I understand this one too. Although there was the comment from the Dr. at the House Clinic that makes me think there have been some improvements to this approach over the years since he said some places don't do it in the proper manner to allow sufficient access to large tumors.
and then what I thought was called "suboccipital retrosigmoid" (by such authoritative sources like Wikipedia ;) )
I've been just shortening this to "retrosig" in my discussions.
Now I read this
but until a few years ago retrosigmoid was the one based on my research and interviews. In fact, it was developed by my former ENT, Dr Cohen, a few years after he participated in my first surgery. This is very old and an improvement over suboccipital approach which is what I got originally.
And have to ask . . .
what's the difference between the suboccipital approach and the retrosigmoid approach?
Is the "suboccipital retrosigmoid" something different?
A combination of the two perhaps?
Or just the full, proper name for what we all call retrosigmoid?
Scott
-
Scott -
just my thoughts on follow-up care as well as regular care during AN surgery.
As a patient, you have a right to expect certain things and you are right to discuss those expectations with the doctors you are consulting with. This is one of the reasons people consult with more than one doctor. You need to find what works for you and you need to have a doctor(s) who will work with you.
My experience is a lot like Patrick's, I do still have contact with my doctors. No one has turned me away because my surgery took place 3+ years ago. They know what my expectations are and I know that they are there if ever I should run into a problem that's related to my AN (or my BAHA). This is one of the many reasons I chose to "employ" them.
Like I said in one of my prior posts, don't compromise.
This is brain surgery. You don't have an in-grown toenail.
Jan
-
Scott,
The old suboccipital approach (the one that I got during the first surgery) can be thought of as a widened retrosigmoid. Basically, the entry is also in the back of the head but the scar is different, longer, and the opening is wider. More bone is taken out and replaced by metal mesh. So, my original scar goes from top of my head to the middle of my neck in almost a straight line and the metal mesh is bigger than for someone operated recently.
Retosigmoid is also from the back of the head but the opening is smaller, it is done at a certain point to prevent nerve damage and so on. It essentially replaced suboccipital approach. However, some surgeons call the approach suboccipital out of habit when they have to go in at the back of the head. I guess "suboccipital retrosigmoid" name is also used but it is all the same thing.
Hope it helps.
Eve
-
That's interesting.
I specifically remember the guy at Hopkins calling it Suboccipital Retrosigmoid . . . . possibly even as a correction to me when I simply called it Retrosigmoid.
If he's been doing them 18 years, he was doing them relatively close to the time you had your first one (relatively)
He described the incision as going from behind the ear down the neck, and then turning towards the spine just inside the hairline.
He also said there'd be a titanium mesh.
That sounds to me like a pretty large opening.
Here's an example: http://buginthebrain.blogspot.com/2009_09_01_archive.html (scroll down to Sept. 25th 2009)
Scott
-
Sorry, Scott, my scar is A LOT bigger than Nikki's and my cranial defect (opening in the skull) was so significant that I could never put my hair up, I always had to wear it down. During my second surgery, Dr. SH used bone cement and built-up that indentation a little bit so that it is not so obvious now.
As far as the true difference between suboccipital retrosigmoid and retrosigmoid, it is millimeters. I doubt it would be an issue to any patient. Every surgeon has the responsibility to get the best outcome possible for his patient and if he can do that with one versus the other, then be it.
Eve
-
Eve -
thanks for the explanation of retrosigmoid vs suboccipital retrosigmoid.
I was always told I had retrosigmoid but I noticed that when the ANA listed me on their WTT list, they put me down as suboccipital. Didn't really understand that they were pretty much the same thing, until now.
Scott -
there are lots of different scars on the Forum; some have posted pictures that you might find if you search. Mine looks like a > directly behind my left ear. It doesn't extend out too far towards the neck; perhaps an inch and a half at the most.
Jan