Author Topic: Why choose surgery???  (Read 15659 times)

sloxana

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Why choose surgery???
« on: July 26, 2007, 12:46:54 pm »
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
1.9 cm AN
Diagnosed Jul 9 2007
Surgery will be 9/14/10 with Dr. Haynes and Dr. Thompson at Vanderbilt

Denise

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Re: Why choose surgery???
« Reply #1 on: July 26, 2007, 01:25:59 pm »
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
4+ cm, left side
translab 5/9/2005
CSF leak repair 6/23/2005
platinum weight in left eye 11/9/05
12/7 nerve switch 8/3/06
Univ. of MN Drs. Levine/Haines

susier

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Re: Why choose surgery???
« Reply #2 on: July 26, 2007, 02:22:58 pm »
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!

Raydean

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Re: Why choose surgery???
« Reply #3 on: July 26, 2007, 02:31:38 pm »
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
Do not go where the path may lead, go instead where there is no path and leave a trail.

Mark

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Re: Why choose surgery???
« Reply #4 on: July 26, 2007, 03:38:44 pm »
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
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

sloxana

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Re: Why choose surgery???
« Reply #5 on: July 27, 2007, 02:12:13 pm »
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
1.9 cm AN
Diagnosed Jul 9 2007
Surgery will be 9/14/10 with Dr. Haynes and Dr. Thompson at Vanderbilt

OTO

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Re: Why choose surgery???
« Reply #6 on: July 27, 2007, 09:13:35 pm »
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... 

leapyrtwins

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Re: Why choose surgery???
« Reply #7 on: July 27, 2007, 10:17:34 pm »

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
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

Labott

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Re: Why choose surgery???
« Reply #8 on: July 27, 2007, 10:26:25 pm »
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
Radiosurgery 02/02/2006 1.2 cm  - right side
@Emory Univ Hospital: Drs. Douglas Mattox and Ian Crocker

Omaschwannoma

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Re: Why choose surgery???
« Reply #9 on: July 28, 2007, 06:45:43 am »
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. 
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

Desilu

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Re: Why choose surgery???
« Reply #10 on: July 28, 2007, 10:48:17 am »
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
HEI July 26, 2005
5mm X 8mm Left AN
Middle Fossa
Dr. Brackmann & Dr. Hitselberger

Omaschwannoma

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Re: Why choose surgery???
« Reply #11 on: July 28, 2007, 11:41:46 am »
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. 
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

Raydean

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Re: Why choose surgery???
« Reply #12 on: July 28, 2007, 03:05:08 pm »
 
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
Do not go where the path may lead, go instead where there is no path and leave a trail.

Obita

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Re: Why choose surgery???
« Reply #13 on: July 28, 2007, 08:48:59 pm »
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

 

Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

leapyrtwins

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Re: Why choose surgery???
« Reply #14 on: July 28, 2007, 10:34:07 pm »
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



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

 


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