Looking for Success stories from folks with large AN's and Translab approach

[TR4guy]

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

[leapyrtwins]

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    

[Cheryl R]

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

[leapyrtwins]

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

[TR4guy]

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

[TR4guy]

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. 

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  )


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

[jerseygirl]

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

[texsooner]

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

[lori67]

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.    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

[TR4guy]

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

[TR4guy]

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

[TR4guy]

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

[leapyrtwins]

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

[jerseygirl]

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

[TR4guy]

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