ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: sloxana on July 26, 2007, 12:46:54 pm
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For those of you who decided on surgery instead of radiation, can you tell me what made you choose that option? I'm really new at all this and I'm just trying to decide on one or the other. I've definitely decided against watching and waiting.....just my own personal preference. It would make me too nervous to know that I have a tumor and I'm not doing anything about it! :) So I now have to decide on surgery or radiation. There's just so much information out there!!! I'm going crazy trying to read everything!
Thanks so much!
Susan
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My tumor was huge, so I had no choice. But, I really think if i had been able to "watch and wait" or have radiation. i would have chosen radiation. But, that's my personal opinion and as I said I never really had a choice, so I THINK that's what I would have done.
Denise
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I am still in the pre-treatment stage and trying to decide myself what to do. I have an appt next week with an ENT surgeon/Neurosurgeon and am keeping an open mind until I hear what they have to say, but...... given the risks that I have read about surgery, I'm leaning more towards radiation. I'm also a single parent and the only source of income for my family. Six weeks recovery period from the surgery would put me in a real financial bind. The treatment, no matter which is decided, has got to be less stressful than the decision making!
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Both surgery and radiation are valuable tools in the treatment of AN's. It all comes down to what you are the most comfortable with. It's important that you talk to specialists in both fields in order to make a informed decision based on your medical situation. Regardless of treatment options chosen it's very important that you chose a medical team that has vast experience in the treatment of AN's in your chosen treatment option. Taking the time to research your options in treatment will give you a firm foundation so decisions are based on fact and not emotion. You'll know in your head and heart what's right for you. Remember there are no right or wrong choices. The right and best choice is the one that you make after researching and consulting with medical doctors in all treatment options.
Some people have surgery base on size (usually a large tumor) and or location. Others chose surgery because they can't stand the thought of it being there, they want it out. Some go with what they are familar with. I don't think that there is any one single answer to why one person choses surgery and another radiation. It's a personal decision for everyone.
Know that you aren't alone and many here will be glad to answer your questions and assist you.
Hugs
Raydean
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As always, Raydean's response is always very thoughtful and "spot on" as Phyl's Cheeky Bloke might say. I couldn't add anything else to her answer
Mark
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Thanks everyone for taking the time to respond to this question! I'll probably change my mind several times before deciding on the right treatment for me...that seems to be the norm. But I guess it will definitely boil down to what I feel is right for me and my situation. It will be interesting to see what the doctor at Vandy has to say next week (I hear that he is a pro-surgery doctor). I will be so glad when whatever treatment I decide on is over with and I can become a post-treatment discussion board member!! :)
Susan
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After having consultations with one doctor of each preference (radiation - gamma knife and surgery)... I just had a feeling that the positives for surgery outweighed the negatives. I sat down and tried to compare the percentages of this and that, read everything I could, but the final decision was just a feeling that surgery was better for me...
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The neurotologist I saw actually does both radiation and surgery, so he was able to tell me all about each option, the possible side-effects, length of recovery for each procedure, etc. My AN was originally considered medium size, so either option was a possibility for me. My doc was very adamant about not choosing the option for me - which initially really kind of ticked me off. I was looking for him to decide, since dealing with ANs was "his job" and I figured he knew best. Also, I think I was looking for an easy way out by having someone else make the choice for me. But he refused to do tell me what to do; he said that it was a personal choice. In time, I came to realize that he was right and it made me respect him that much more.
Anyway, it's a hard choice. Like you, I am a single mom who solely supports my children financially so I had great concerns about a 4-7 day hospital stay plus 6 weeks recovery at home away from my job. So, originally I was leaning towards radiation - it seemed like the quickest route and, in my mind, outpatient was much better than inpatient. In fact, I told the doc at my first visit that there was no way I could afford to be off work for so long and that I had children to take care of, so surgery was totally out of the question.
But the more I thought about the AN, the more I decided I just wanted it gone. I didn't want to get it zapped and then hope it would stop growing; plus I was concerned that it might not stop growing and then I'd have to have surgery anyway. The bottomline for me was that I just wanted it removed. So I changed my mind and opted for the surgery. It wasn't an easy thing, but in hindsight, I can honestly say that it was the best choice for me. I have no regrets.
And I think that's the key. As others, including my doctor, have said - it's a personal choice and you need to do what you're comfortable with; what you think is right for you. It's also important to be well-informed and to chose a doctor who has lots of experience with ANs.
Best of luck in making your decision. As you know, it can be very stressful.
Jan
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Susan:
Before making your decision, I suggest you contact folks on the "willing to talk" list. Chatting with people who have chosen surgery, radiosurgery, and watch/wait will give you perspectives that you just won't get from searching the web or talking with physicians. You'll find success stories from all three camps and, as a result, make the decision that's right for you.
-Labott
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My reason for surgery was based on information given to me from the doctors from both fields of treatment. I was diagnosed in August of 2004 and saw one doctor then who recommended surgery, or watch and wait. My balance was off slightly, didn't put two and two together, but slight drooling from my lip had started meaning my facial nerve was becoming compromised. In October 2004 I visited with one neurosurgeon, ahem, chief of neurosurgery who performs LINAC radiation treatment and he explained I was candidate at 1.3 CM, but I would most probably not see improvement in my balance nor facial nerve. A neurotologist told me I too was a candidate for radiation treatment, but could also watch and wait for another year. My concious told me otherwise.
Two months passed at original diagnosis and had a feeling the tumor was growing. My facial nerve was becoming more compromised to the point of now biting my tongue and lip, drooling a little more, couldn't hold a smile without cramping, and my eyelid/brow began drooping slightly. Another wrench thrown in was my daughter started planning her wedding for July 2005 in Germany and the dilemma of waiting 9 more months until after her wedding had me very concerned about more damage on the facial nerve. I wasn't thinking then about my hearing nerve as I had the other ear to hear from.
Tossing around all information back and forth with pros and cons I set a date in January 2005 for surgery. Information at that time had the odds higher for complete tumor removal with surgery. I was 49 years young enough for many more years of living and with better chance of tumor recurrance with radiation the thought of undergoing surgery at an older age didn't bode well with me. I think too many people hear "Some people JUST want it out." This can be misunderstood as the person is driven crazy knowing it's there and so choose surgery in a willy nilly manner to end their anxiety that a tumor is in their head--NO. Their decision for surgery is carefully thought out based on updated information. They want it out because surgery stats show better odds at complete removal and new information (from Symposium) has doctors saying with radiation there are more patients they see with recurrant tumors having a greater chance of nerve damage than before. I would like to see the statement "Some people JUST want it out." go by the wayside and replaced with the truth.
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Hi Susan,
I have to agree with Raydean and leapyrtwins(Jan). It is a very personal decision. You have to do your research and do what you feel is best for you. I am a single mom also but I did my homework and made the best possible decision I could make based on the information I had. There are no guarantees with surgery or radiation. I was very happy with my decsion to have surgery and would do it all over again if I had too.
Labott, suggested to talk to people on the AN willing to talk list. My name is on that list and I would be more than willing to talk to you about my experience. As a matter of fact, I just celebrated my 2 year post surgery date on July 26! If you would like to talk, just send me a personal email. I wish you the best on your AN journey. We are all here to help! Ann
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Susan,
I would like to suggest you get the most recent ANA Symposium tapes/cd's and listen specifically to Dr. Friedman from HEI in California, where surgery and radiation treatment are available so no slant to one treatment or the other as the doctors there are all partners together (I'm not suggesting you go there). There is no guarantee with any treatment, even radiation as the "long-term" studies still are up for question. The one-hour seminar on vestibular balance by Dr. Friedman is very good.
Best of luck in your decision, I know there is much in the way of information to absorb, and you are in the beginning stages. We all have been there and I learned to take it one day at a time or one document and doctor visit at a time. Tape recorders at doctors visits are a wonderful asset as you can listen again for anything you didn't catch the first time around. It would be much easier if when diagnosed with our AN's the doctor says there's only one way to treat and it needs to happen immediately so no choice or investigative work is involved--easy peasy. Unfortunately this is not the case. We are here to support you and your questions.
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Hi Karen
Your statement "Some people JUST want it out." go by the wayside and replaced with the truth. I find confusing.
Some people are very uncomfortable with a growth of any type being being anywhere in there body, but especially the head. If someone is that uncomfortable then it becomes a factor in their decision making as to treatment. It does not mean that anyone is crazy, nor seeking treatment in a willy nilly way, nor is it an untruth. It is a rational consideration in the decision making process. Each of us know what we are and aren't comfortable with, and it's different for everyone.
I'm truly sorry if i offended you in anyway, but i don't see where I told any untruths.
Best to you
Raydean
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Hello Susan:
I chose surgery because I couldn't stand the pressure from my 2.5 cm AN. I was not willing to risk the chance that radiation would make the AN swell.
I chose translab because my hearing was shot anyway and the approach gives the surgeons a better view of the facial nerve.
I do not regret my decision because I had no complications.
Just lately, I have realized that I had had the "it won't happen to me - my surgeons are as experienced as they get" attitude. Not exactly realistic thinking as I had just found out I had a rare tumor in my head and 25 years ago I had a rare neurological disease that paralyzed my legs. Then, the rare neurological disease was treated with drugs that gave me a rare degenerative joint disease. Yeah right, it won't happen to me. What was I thinking?
Now, I have many AN friends that were not so lucky. I have seen first hand what facial paralysis can do to ones self esteem. Many have headaches so bad they can't get out of bed.
I was told about the possibility of facial paralysis and headaches by my surgeons and from reading online. That was all before I KNEW people with these complications.
Had I connected with my AN friends before I made my decision, I might have chose radiation.
Good luck to you, Kathy
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When I stated earlier that I chose surgery because I just wanted my tumor gone, I didn't intend to leave the impression that I made a hasty choice. Surgery was not a choice I made randomly.
I weighed the pros and cons of both radiation and surgery. I also considered the possible side-effects and all the statics (good and bad) related to each procedure. I discussed my decision with my doctor numerous times - both in person and on the phone - and I made a conscious, well-informed choice. Surgery was right for me - it may not be right for someone else.
I can't stress enough how important personal choice is. Susan, it's good to get others' opinions and input, but in the end you should do what is right for you.
Good luck in reaching your decision.
Jan
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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!
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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
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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
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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
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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.
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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... :)
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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
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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"
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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
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Newly diagnosed -- appointment on August 10 -- thank-you for the question.....
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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 (http://www.anarchive.org/fox_case.htm)
Have a good week everyone!! Kathy
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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
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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.!!
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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.
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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
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(peeking out of hiding place) Has the dust settled yet? 8)
One of the articles cited above got it right in its opening sentence:
"There may be no other intracranial neuropathological entity whose proper treatment arouses as much controversy as vestibular schwannoma." - Jason Sheehan, Journal of Neurosurgery, Nov. 2006
I am lucky enough to have an ENT who straddles the fence and discusses both options, despite being a practicing surgeon himself. (Dr. Hodgson, Portland, OR). I saw him today.
One factor we have not discussed here is that surgery sacrifices the balance nerve on the affected side. Since my lab tests show good vestibular nerve function on both sides, and I have "serviciable" hearing on the left and a small tumor, both the doctor and I lean towards radiation. There is little chance, though, that this will relieve the physical pressure exerted by the tumor on nearby nerves and blood vessels; it will only stop it from increasing. But since it is a small tumor, and surgery would do no better at saving the affected nerves, it seems to make sense to me.
Anyone up for a GK versus CK debate? ;)
Steve
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Oh, Boy I was wondering when "The Great Debate" would surface!
My diagnosis was a joint effort between my GP, who ordered my hearing test and MRI, and the ENT, who brought me the bad news while I was in the hospital. I had been admitted the previuos day with a migraine, so they kept me overnight and MRI'd me the next day. In the hospital I asked the ENT point blank if there was any form of radiation for this tumor and his answer was a firm "No." My GP also told me I needed to have surgery as soon as possible.
Needless to say the first thing I did when I got home was jump on the intenet and find the ANA site.
Of course there's radiation for these tumors, dummy! Jeez! Needless to say, I haven't been back to either of these docs. In the long run I did choose surgery, but not before a month of research, reading and soul-searching. It seemed to be the best fit for my circumstances, too numerous to mention here. I can't say I'm happy with my outcome in regards to headaches, (doc said I had a really tight dura) but my facial nerve was unfazed and being quite athletic to begin with, my balance recovered quite quickly. I'm pretty sure my tumor is gone for good, though. MRI's don't make me nervous.
I just don't see any end to this debate--maybe in 20 years things will be different. I'm just glad those of us who have access to the internet can access the information we need to make an informed decision however confusing it may seem at times. Some arrive here with sad stories of misinformation and inexperienced treatment.
Be Well and Sail On, ;D
Capt Deb 8)
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Anyone up for a GK versus CK debate? ;)
Steve
Can I be the fly on the wall for this one? I'll be making the martini's.... just follow the trail of olives.
Phyl
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Got to be careful with this debate. there are a number of "discussions" about radiation treatment on this forum that seemed to, in the main, cause people's passion to come through.
I can only discuss my personal issue and in some ways, very similar to Deb's except like an idiot, I didn't research properly before I agreed with my Doc to have surgery. personally, the post surgery trauma that i have had for 4.5 years now has been nothing short of "HELL". As some know, I have not had a headache free day since surgery. never had a headache in my life prior. I also have sacked my Doc coz he lied repeatadly to me including telling me that a white spot on my MRI post surgery, was not re-growth. I sought another opinion and it took that Doc about 3 seconds to tell me that my AN has re-grown. He also has told me that Middle Fossa surgery was his biggest mistake in his career coz of the side effects post surgery and also the re-growths - he referred me to a study in belgium which i need to get hold of.
Anyway, the result of my surgery has been, re-growth - so back to square one. headaches daily and some days (about 2-3 times a week) a massive attack where I get moody and can't work - pretty understandable I guess. Without harping too much on it, I can't even dry my hair with a towell without feeling pain. i have tried virtually every pain killer on the market including cortizone injected into my head on many occaisons. I still have the headaches!
I am in watch and wait mode at present but if I need treatment, ya reckon I'm going to choose surgery if I have a choice?
For new patients, weigh it up. My only advice is:
Surgery - make sure you use an experienced Doc.
radiation - make sure the equipment being used and most importantly the programmers of the equipment are modern and experienced.
there are lots of technical comparisons and risks of both approaches, weigh them up as well.
Laz
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guess I am reminded why I became somwhat inactive on this forum
patti Ut
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explaination to my last post, the informative and compassionate postings are what I come for, when someone finds information in someone elses post that they feel is inaccurate or thye don't agree with, is it appropriate to come at them like attack dogs, that's what makes me log off....bye
patti
laz, good info on the middle fosa & headaches, I know many of us who had middle fosa have the braiwrecks., would be interested in stats on that!
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At the Symposium, we learned that the ANA will be posting an online survey as a statistic gathering device for just such purposes, Patti-yootee. They are interested in follow-up statistics concerning headaches, re-growth, percieved disability and so on. I'm sure we'll get the head's up when it's ready to be adddressed and I hope all of us will participate. What a great tool for newbies it will be.
Capt Deb 8)
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Hi Susan- you are doing what you gotta do. Just keep up your inquiries and research but always remember that you have the time to make an informed decision. I cannot emphasize that enough. Because you are naturally anxious to put it all behind you remember the most important part of your work is now. There are many many qualified medical professionals who are qualified to take care of the type of treatment you choose.
I chose surgery because the AN was large enough to be pushing on the brainstem, and I know that there can often be complications associated with post radiation of large tumors in some cases.
I'm happy with the decision I made inspite of facial nerve issues which are expected following translabyrinthine surgery. I think I'm also on that list and would be happy to chat.
Even though I did a fair amount of research and changed my mind along the way about the surgery type I was to choose I still felt that I rushed my decision due the anxiety about making the decision in order to put it behind me. My opinion is that you should pursue radiation options first and then compare surgery options. Good luck to you and keep your head up! Neal
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Why I choose surgery? hmmm many reasons. I couldn't stand the idea of something "foreign" being in my head. Also too I thought about my age and if the tumor grew more where would I be health wise. Would surgery be more or less traumatic at say 75 or 80 than at 57? I think I looked at all the factors ... postiive and negative with radiation and surgery and decided that surgery was by far the best decision for me.
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Wow, I haven't seen such passionate debate since "tastes great - less filling"! Having only been diagnosed June 28th, I find myself in the same situation as Susan. I go speak to a neurosurgeon tomorrow. But I do appreciate the pros and cons discussed here. Thanks all.
Regards,
K
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Just a thought here regarding doctors, businesses, surgery, radiation, leaving one with the impression the doctor is steering you in one direction--theirs.
Has anyone given thought to how much knowledge a neurotologist has when is comes to radiation therapy? In all honesty all they can do is tell the patient there is another choice for treatment (not talking about watch and wait as this isn't a "treatment" per say). They cannot talk about the proceedure nor the long-term outcome, stats, etc., but they can talk, in great detail, about how their procedure would take place. Maybe this is where the patient perceives they are being led down the surgical path vs the radiation path (and this goes for doctors performing radiation therapy).
Then comes thoughts of "doctors are in it for the business", well they are being paid for their services, but I have a hard time thinking they would push hard for you to undergo invasive surgery and all the potential problems involved with that so they can make more $$ (one could think radiation doctors use the "less side effect, less invasive" as a carrot). They do have other patients they see in their practice with problems other than AN's and money does come from those services so I doubt they are starving looking for their next meal ticket--you the AN patient.
Quickly departing to watch the rockets red glare
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As a side note, in spite of the earlier fireworks, this thread really has developed into a fruitful discussion.
I agree, Bruce. I would much rather have a spirited debate with exchange of useful information and references, even if it gets peoples' dander up abit, than a sleepy forum with little to offer. When we are talking about the choice of someone poking a knife into my head, or someone shooting it with a ray gun, I need some passionate discussion, dad gum it!
Wow, I haven't seen such passionate debate since "tastes great - less filling"!
Less filling. :D
Steve
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Here, here bruce, well put.
I have posted my thoughts on the financial incentives for docs in the venting thread so won't repeat other than to say that there are great people in the medical profession and there are those in it to not only help people but also for the financial rewards. Docs are no different to any other profession as far as work ethics go.
thats my last post on that topic coz its not fruitful to help us and newbies going forward. At the end of the day, we have to weigh up all the options
laz
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Just a thought here regarding doctors, businesses, surgery, radiation, leaving one with the impression the doctor is steering you in one direction--theirs.
Has anyone given thought to how much knowledge a neurotologist has when is comes to radiation therapy? In all honesty all they can do is tell the patient there is another choice for treatment (not talking about watch and wait as this isn't a "treatment" per say). They cannot talk about the proceedure nor the long-term outcome, stats, etc., but they can talk, in great detail, about how their procedure would take place. Maybe this is where the patient perceives they are being led down the surgical path vs the radiation path (and this goes for doctors performing radiation therapy).
Karen -
this comment confuses me. Don't know about neurotologists where you are, but my neurotologist is VERY well versed in both surgical and radiation procedures, and also in the long-term outcomes, stats, etc. of each option. In addition, he routinely and actively participates in both surgery and radiation. I found him extremely knowledgeable and extremely well-informed. In fact, it was my numerous conversations with him, weighing the pros and cons of each procedure, which helped me decide which procedure I wanted to go with.
Jan
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Short and to the point. Unless your neurotologist performs radiation therapy AND surgery (Dr. Antonelli performs surgery only) I would recommend the patient see both professionals (one that performs surgery and one that performs radiation) to get a good understanding of each treatment. Now in regards to radiation treatment I would be visiting with ALL the doctors that have experience with their form of radiation--GK, CK, LINAC and PROTON.
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My neurosurgeon does both - microsurgery and radiosurgery. He's not long out of his schooling, so maybe that's why. He was probably open to all the "modern" methods!!
Sue in Vancouver USA
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Kind of sounds like maybe younger neurotologists are doing both microsurgery and radiosurgery these days. Maybe some of the older docs only specialize in one or the other? ???