Author Topic: Why choose surgery???  (Read 15656 times)

Omaschwannoma

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Re: Why choose surgery???
« Reply #15 on: July 29, 2007, 02:32:28 pm »
To claryify some of my statements regarding a greater chance of damaging facial nerve and/or hearing nerve on radiated tumor that HEI sees more often now.  Brucifer the articles you post are a bit slanted (some outdated) as they are written by doctors performing radiation treatment so as I've seen stated often, "Those that do surgery favor that and those that do radiation favor that."  If radiating tumors was the best course of treatment for small to medium tumors then I know my neurotologist would've told me there is only two choices, Watch and Wait or Radiation.  The door remains open to this treatment, I know many people have much success with this as do many with surgery.  I know many people who have the opposite with both.  Such is the dilemma for the new patient.  Another good bit of info for surgical patients on watch and wait, a tumor greater than 2cm increases the risk for nerve damage to face, hearing. 

Raydean, I am not offended by your comment and after re-reading my post, I sounded offended.  The CAPS are to emphasize in a nice way, not offensive.  Our personalities can be mistaken when we write vs when talking to one another.  I have heard the statement "Some just want it out." said with such a casual tone that it infers the patient choosing surgery didn't choose based on knowledge, statistics, family, work, home life.  Surgical patients choose knowing the odds are greater the tumor is out/gone for good and herein may be the misunderstanding when it's stated "Some just want it out."  Surgical patients have great hope in returning to a "normal" life never to be bothered by the tumor again.  You know I've been trying to come up with a better way to say this that includes a well-thought-out decision, but can't come up with one that says just that.  I persoanlly did not want to revisit this tumor issue with a greater chance of facial nerve damage by choosing radiation treatment.  If the radiated tumor starts growing, it makes it more difficult for the surgeon to save the facial nerve.  Also, who knows when a radiated tumor would or should grow?  Had I chose radiation and went say 10-20 years before the tumor grows, I'm still youngish enough and the thought of surgery at 60-70 years old didn't make me comfortable. 

I hope I'm more clear here and will do better at re-reading more carefully befor hitting the "post" button.  I've re-read and satisfied with my thoughts.  I'm hitting "post" now, but not until I've "blocked and copied" as I've lost many posts that way!
1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear

IAHeel

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Re: Why choose surgery???
« Reply #16 on: July 29, 2007, 04:48:36 pm »
Bruce,

For Pete's sake. Go to the HEI site, read Dr. Friedman's CV and their research. If you want to disagree with them, fine. But your continued statements about HEI are baffling.

Fred

sloxana

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Re: Why choose surgery???
« Reply #17 on: July 29, 2007, 04:54:27 pm »
Thanks everyone for giving me their opinions about this topic.  I really, really appreciate it!!  You gave me lots to think about before I make my final decision.  One thing I realize is that no matter what my final decision will be you all will be there to support me and that means so much!!!

Again many, many thanks,
Susan
1.9 cm AN
Diagnosed Jul 9 2007
Surgery will be 9/14/10 with Dr. Haynes and Dr. Thompson at Vanderbilt

Desilu

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Re: Why choose surgery???
« Reply #18 on: July 29, 2007, 10:41:11 pm »
Hi Bruce,

I don't want to get into the middle of this discussion but I feel that it is very important to let others know that there are success stories out there with people that chose surgery and I am one of them. My only problem post surgery is minor hearing loss (15%). I don't have any headaches, facial weakness or paralysis. The problem with success stories is that most people that don't have any problems just move on with their lives and don't bother to post on this web site. So we really can't get a true count of successful outcomes as opposed to people with issues after surgery.

I am not against radiation and I am not pro-surgery. I feel everyone has to make their own choice based on an educated decision. As I have stated before, there are no guarantees with surgery or radiation.  Ann
HEI July 26, 2005
5mm X 8mm Left AN
Middle Fossa
Dr. Brackmann & Dr. Hitselberger

leapyrtwins

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Re: Why choose surgery???
« Reply #19 on: July 29, 2007, 11:15:56 pm »

I don't want to get into the middle of this discussion but I feel that it is very important to let others know that there are success stories out there with people that chose surgery and I am one of them.

Ann -

I agree wholeheartedly with you.  I, too, chose surgery and am thrilled to say that I consider myself a success story.  At almost 8 1/2 weeks post op, my side-effects are thankfully minimal.  I am completely deaf on my left (AN) side, but I have no facial nerve damage, no facial nerve weakness, no headaches large enough to be greatly concerned, no tinnitus, etc.  I have some small issues, but all in all, everything turned out amazingly well for me.  I am not against radiation either; nor am I pro-surgery; there are no guarantees to either treatment.  I feel that my lack of serious side-effects is nothing more than incredible luck.     

IMO some doctors do have a tendency to push their "favorite" procedure and I think patients need to be conscious of that.  When I first met with my neurotologist, he told me my options were surgery or Gamma Knife radiation.  He and I discussed both procedures in detail, but he left the choice up to me.  To help me decide, he gave me the names and phone numbers of the two doctors he works with - a radiation oncologist who assists him with the Gamma Knife and a neurosurgeon who assists him with the surgery.  He encouraged me to call or meet with both doctors while making my decision.  I decided not to call or meet with either one.  I felt that the oncologist would tell me to do the GK radiation - since that was his speciality - and that the neurosurgeon would tell me to do the surgery - since that was his speciality.  I could be wrong, but I didn't feel that either of these two docs would have told me to choose the other's speciality.   
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Lorenzo

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Re: Why choose surgery???
« Reply #20 on: July 30, 2007, 12:41:18 am »
Just to throw in my two cents (Euro) worth of it: funny thing about statistics and figures and so on, we're not statistics. None of us are. All of us are our own case of AN, we're all different, and furthermore there are no guarantees in this, whichever treatment option one prefers or feels more comfortable with. One can read all the papers one wants, digest all the opinions one hears, absorb and assimilate unbiased opinions, reject biased ones, but in the end of it all, you are the one making the decision. Ok, you'll make an 'informed' decision, the the bottom line is, there are no guarantees for you. I'm just trying to say that in the end (as Raydean and others have already said) your decision will be based on what gives you the most reassuring feeling, what feels right to you, having had all the information.

in my case i was a candidate for both surgery and radiosurgery. I read and read and discussed and thought, until my eyes popped out and my brain couldn't take any more. In the end, the information I got for different options was so close in terms of outcome, it really didn't  figure that much in it. Ok, I preferred CK finally, as the prospect of no recovery problems really appealed to me. Right. Felt good, felt right, that was it. I traveled half way around the world to get CK. Wonderful experience and a holiday to boot! Brilliant.  That's until i came back here and then it hit. had the most awful 8 months of not functioning properly mentally, and a fatigue so BIG I felt I would never be able to work/live the same way again. I still think I made the right choice for me, I really didn't feel comfortable with the idea of somebody rooting around my brain with metal tools, regardless of what surgical demi-dog they would have been. But the 'no recovery problems' was a total misnoma. I didn't fit the statistics, obviously. Turns out I was my own case, with my own particular set of circumstances. My ooutcome was just as individualistic as i am, we all are.

As for the future, well, it'll turn out the way it wants. Who knows. Surgery? Leave a cell behind and it  starts growing again? Radiosurgery and the darn goopy mess starts acting up and decide to make a comeback? Well, that'll be down the road, I'll deal with it then. Either I'll find the surgical demi-god I missed the llast time, or they'll have some other form of treatment by then. Regardless, I'll do something.

That's of course if the AN comes back. No guarantees, either way.

Ciao, Lorenzo

PS: oh, and by the way, I am now doing great, nearly three years post CK. BAck to doing all I did before and more than i have in a long time. Still have some effects, but I learned to live with them and avoid them as much as possible. I think my brain is working again, sort of... :)
« Last Edit: July 30, 2007, 12:46:02 am by Lorenzo »

sgerrard

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Re: Why choose surgery???
« Reply #21 on: July 30, 2007, 01:47:24 am »
Another point of view, from someone pre-treatment.

  There are two quite different issues roaming through the discussion. One is that bogus arguments get floated in support of one treatment or another. Surgeons like to suggest that removing the tumor means it can't grow back, implying that it can after radiation, although the regrowth rates after radiation are actually just as low or lower. That doesn't mean surgery isn't good; it just means the surgeon is tossing around an idea that is not borne out by facts. The same thing happens when GammaKnife centers argue that it is better than CyberKnife, or vice versa. Sometimes I feel like I am shopping for a used car, not a medical treatment.

  The second issue is that statistics don't help us much as individuals. We each have, or have had, an affliction that strikes less than 1 person in 200, so we know that a 0.5% chance can happen - it has already happened to each of us. The two numbers that never show up in the statistics are 0% and 100%. In any one case, treatment may turn out terrific or dismal. The only way to know what will happen in our own case is to try it and find out.

  I would love to have Ann's middle fossa surgery outcome, or any of several successful CK outcomes I have seen posted. I don't want Lorenzo's 8 months of mental disfunction from CK, or any of the side effects of some of the surgeries posted here. So far, however, none of the treatment centers are willing to guarantee the outcome, and I don't expect any will.

  I do think that the real culprit, the tumor, gets overlooked sometimes, when handing out blame for the outcome of this or that procedure. Each one can be tangled with its surroundings in its own special way, making accurate forecasts of outcome impossible. When the time comes, I will choose a course of action, and like everyone else, take my chances and hope for the best.

Steve

8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

Sam Rush

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Re: Why choose surgery???
« Reply #22 on: July 30, 2007, 02:54:51 am »
Bruce,

 You are wrong again!!! There are NOT a lot of otologists and ENT's who treat AN successfully!!!   That's the main problem with this tumor. There may be a lot that treat them, or try to, but only a few with excellent statistics..

As I've mentioned before, your statistics are nationwide and reflect in many cases inexperienced surgeons. 

This is the main premise of the ANA support group forum. Only go to experienced surgeons who do 40 or more a year. I would change that to 100/yr. Then your clain of a recurrance rate of 10% would be thrown out the window.

I am offended that you imply that my friend Dr. Brackmann, and his protoges at HEI would falsify or slant their statistics to make more money. I know (as a doctor) that there are Dr;s who do that, but not the HEI group.

There is a CK group here in Fresno/Clovis that recc. a consult with Dr. Brackmann for pts who come to them with a AN.

 In fact, you would be well served to go down there for a consult, before  you continue to "watch and wait" 

 
1 cm AN translab, Dr. Brackmann, Dr. Schwartz, Dr Doherety HEI   11/04   Baha 7/05

Raydean

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Re: Why choose surgery???
« Reply #23 on: July 30, 2007, 04:08:09 am »
Hi Karen

Thanks for explaining things better and i do understand, there's a few key words that will set me off too.

I appreciate your posts, you show wisdom, compassion and caring plus have a great sense of humor!!!  I look forward to your future posts

Have a great day!

Hugs
Raydean

Do not go where the path may lead, go instead where there is no path and leave a trail.

luckylady

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Re: Why choose surgery???
« Reply #24 on: July 30, 2007, 05:46:24 am »
Newly diagnosed -- appointment on August 10 -- thank-you for the question.....

Obita

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Re: Why choose surgery???
« Reply #25 on: July 30, 2007, 06:26:52 am »
Hi luckylady and welcome to the forum!

Good luck August 10.  Please let us know how it goes.


Some of the oldies on here have probably read this.  I thought it deserved to be in this thread for all of the newbies to see.

Here is a link to a court case where the court agreed that surgeons do have an obligation to inform patients
about alternative treatments for ANs.  http://www.anarchive.org/fox_case.htm

Have a good week everyone!!  Kathy
Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

FlyersFan68

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Re: Why choose surgery???
« Reply #26 on: July 30, 2007, 10:39:14 am »
There were some comments made by Sam & Bruce that I would like to respond to please.
Incidentally,  I remember first reading this post before anyone responded. I was thinking "move along" which I did but wanted to add my pennies. Furthermore, it's nice to see such good insight and knowledge overall although there are a fewthings I would like to say. 


Ann, Jan, Lorenzo, and Steve...

You all make valid points and I agree. There are a lot of wonderful success stories out of HEI and other AN treatment centers. Quite often these are not told and celebrated enough. Many patients go on post-surgery to live happily with excellent quality of life.
This is true but I can understand why some choose not to think of this crap anymore. I'm sure there are plenty people out there just moving on post surgery & radiation.

Also, it is more than just statistics that come into play when making an AN treatment decision. That is why I respect anyone's treatment choice once they have made it. As ANers, we need to support each other even though our personal preferences of treatment may differ.
If you have trouble respecting one's decision before treatment then how can you claim you respect it following treatment. You've made previous remarks such as "it's not the choice I would have made"

My main argument is with ENTs and neurosugeons who do not present a balanced view of the options to their AN patients. I am bothered that some medical doctors who should or do know better perpetuate myths instead of sharing facts when referring to forms of AN treatment that are not within their specialty.
This is true and true for those that perform radiation too. Surgery is generally not their specialty. To send a new patient a link to Pittsburgh should also be sent a link to HEI. Some might feel that House doesn't perform or know about radiation and that's not true just like it's not true that Pittsburgh doesn't know neurosurgery. 

 It is unethical for a medical doctor to not render a full and honest informed consent to a patient. As AN patients we deserve to hear the truth and facts as supported by scholarly research. This helps us make informed choices about our treatment decisions. I am very thankful that my neurosugeon at LSU Health Sciences Center in Shreveport did just that. He was willing to treat my AN via surgery or Gamma Knife had I opted for them; however, he suggested that I wait until a second MRI in six months before making a decision, and I was in full agreement. It turned out to be good medical advice since my AN is not growing.
It's good news that it's not growing. However, it can grow anytime and this bothered me during my decision making process. Also, damage can still occur even if the tumor doesn't grow namely to the hearing nerve.

Sam, I beg to differ with you. There definitly are a lot of ENTs and neurosugeons outside of HEI who are outstanding medical professionals and have excellent track records in treating ANs.
Bruce, I couldnt agree more. This bothers me a bit some because not everyone could just fly out to California. All professionals in all fields should honestly stand together in research.

My own ENT, Dr. Mattox, offers AN patients treatment in both surgery and LINAC and treats many AN patients successfully each year. Although not perfect, Dr. Mattox has an excellent track record, and that is one of reasons I sought him out while I was still living in Louisiana. I am very confident in Dr. Mattox's recommendation that I continue to watch and wait. Prior to my last MRI, Dr. Mattox admitted that he would have recommended treatment due to the size of my AN; however, when my latest MRI came back and showed no AN growth, Dr. Mattox supported my decision and suggested I continue to wait and watch.
You seem to be happy waiting things out...that's good news!

Also, Sam, I am not going to get into judging the motives of why HEI and Dr. Brackmann prefer AN patients to have surgery with them, so please don't judge me for pointing out the obvious. For all I know Dr. Brackmann may believe very strongly in his specialty and his abilities, and he may sincerely want to help his patients and feels he is doing so. So please don't read more into it than is there. People have said that Dr. Brackmann is a very nice, caring doctor, and I believe them.

Bruce

Bruce, it's clear that you will eventually elect radiation one day. That's a good "personal" choice. However, I would be careful throwing around high percentage control rates following radiation. Surgery is a removal process where radiation is a control process. Is it fair to tell someone that radiation has a 99% control rate for their entire life? They must understand that the control rate is only as god as the follow up period. Nothing is bulletprof including surgery. I would also not brag about radiation being repeated on a benign tumor. Hitting the same spot twice only doubles the long term risks that are still unclear at the moment. IMO, this should not be factored into the decision making process. Here on ANA we also have the obligation to give clear accurate information.

Flyersfan

Sam Rush

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Re: Why choose surgery???
« Reply #27 on: July 30, 2007, 11:03:09 am »
I never said everyone should fly out to Calif. I said there are not a lot of surgeons who do enough to do a good job. It took 40 yrs to develop these microsurgical methods used in the current surgeries.  Who do you think started working on these in the 1960's??

Who do you think developed the current surgeries?? Where do you think that the people at major medical centers who can do these surgeries trained???

You don't have to fly to Calif. , but people do from all over the country and all over the world.

Check the academic literature the past 40 yrs on AN's.

Bruce, your continued maligning of HEI motives, and specifically Dr. Brackmann's motives borders on slander, as this is a public forum.!!
1 cm AN translab, Dr. Brackmann, Dr. Schwartz, Dr Doherety HEI   11/04   Baha 7/05

leapyrtwins

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Re: Why choose surgery???
« Reply #28 on: July 30, 2007, 11:16:44 am »
I think Steve hit the nail right on the head.  It is a lot like shopping for a used car. You have to do what is best for you and, as he said, in the end you chose your course of action, take your chances and hope for the best.  The key to all this is making sure you are informed about the options and comfortable with your doctors and their level of experience.
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Larry

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Re: Why choose surgery???
« Reply #29 on: July 30, 2007, 04:28:11 pm »
There are so many variables and pros and cons for both surgery and radiation treatment.

the logical approach is to wright down all the pros and cons of both and score them on a basis of benefit and risk. i dunno, but I'm not quite sure that logic plays a huge part in this debate. Emotion seems to be the best decision. This is, pardon the pun, a mind game. AN's are not only serious physical issues, they cause a lot of mental stress. As surgery and radiation treatments both have successes and failures, the choice comes down to what you are comfortable with in the main and also partly based on the logic test.

Some people just can't stand to think that after treatment that the thing is still in their head and the stress of it potentially shrinking can be over bearing. Others, don't want to have surgery because of having surgery.

My suggestion is, do the logic test based on pros and cons of both and then apply the emotional aspect, in particular, do you want the thing attacked immediately or are you prepared to wait.

Big decision, everyone is different.

laz
2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz