ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: OTO on March 13, 2007, 06:50:34 pm
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I've been lurking on this board ever since I was diagnosed in Feb. I have 10 mm AN on the left-side. Symptoms include moderate hearing loss and tinnitus. I'm leaning toward microsurgery with Dr. Slattery (the House Clinic). This would mean traveling from Honolulu to L.A. I have a consultation with Dr. Slattery tomorrow. I'm still weighing my options. I did consult with a local neurosurgeon here in Honolulu. If I select microsurgery they recommend going to the Mainland, if I elect radiation, they do have a Gammaknife center here. Anyway, just wanted to say hello.... reading the forum is very helpful, reassuring and frightening... ;D
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OTO:
You and I have much in common. I was also diagnosed in February with a 1.8 cm AN. I wish we had geography in common instead. How wonderful it must be to live in Hawaii.
My wife and I had our first consultation yesterday at Northwestern Hospital in Chicago. We have decided to go with Gamma Knife surgery - I am scheduled for 4-26-07. Like you, I am having some symptoms - for me, mostly hearing loss, occasional headaches and dizziness. I am looking forward to getting past the treatment and putting this darned thing behind me.
I have learned much from the good people on this site. Welcome, and good luck as you make decisions.
Nick
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Hello Brucifer,
Actually, I live in Aiea (Newtown)... and my parents live in Aiea (above the high school)... I still open to GK. A high school classmate of mine, who is an oncologist, is going to set up a consultation with a doc who is affliated with the Gamma Knife Center of the Pacific. My ENT only recommends surgery and going to the House Clinic. The local neurosurgeon felt either would work, and he could do the GK here. I was impressed with Dr. Slattery during my phone consultation, and since he comes to Hawaii every 3 months or so, I'm having a face-to-face consultation too. I'm not 100% sure which I will choose, but I'm leaning toward microsurgery just because... my first gut reaction... is to just cut it out, and be done...
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hello OTO,
my name is tony, i came from the big island to have surgery done by dr. slattery. my guy in honolulu was dr liem. same thing, they could have done the cyberknife, but i needed surgery, so he referred me to the house clinic and dr slattery.
my situation was life threatening because of the size of the tumor and the effect it was having on the brain stem. dr slattery and dr schwartz spent 13 and a half hours in my head removing the tumor!!! anyway, those guys are very good. i am alive and well and they are responsible for that, i highly recomend them, i have gotten to know them pretty well over the past 6 weeks.
the only problem with those guys is that they are in ca. instead of hi. i have actually had to relocate form kona to so cal because of this tumor.
funny story, i came from hawaii to have the surgery, and a week after my surgery, dr. slattery went out there to do some work!
make sure you research all you can. i dont know anything about the cyberknifeor other types of radiation. there are a lot of optons to look at.
good luck and god bless
tony
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Hi OTO,
Sorry you had to join our little club. Wishing you the best in your treatment and recovery. I lived in Hawaii when I was but a young lass - Aug 1966 to Aug 1969. Interesting time to live in Honolulu. I was on my son's computer the other night playing around with Google Earth and I went to Keeaumoku Street and could see where I used to work. It's a park now! Also took a look at Pacific Heights because my folks had rented a little house there. That was fun. Wish I could have Google Earth on my computer, but it's too old.
Anyway, I hope everything goes okay for you.
Sue in Vancouver USA
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Hi OTO - Glad you came on.......
I am so glad you found out about the AN before you lost your hearing. Hopefully, you can save it!!
Good luck with your appts. and keep us posted.
Kathy
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Hi OTO and welcome :)
Well, next time you go by Hilo Hatties, I need a new sunhat, a Men of Hawaii Calendar from an ABC Store (pick one, any one) and a pound of Peaberry coffee... thankyouverymuch :)
It's always difficult to hear another has joined our elite club... but if you've been lurking for a while, as you can see, you got the best round of support here. Regardless of what you decide (and it sounds like you are doing terrific research!), we cheer you on.
Again... .welcome...
Phyl
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Dear Oto, Go with your gut or could the "gut" really be instinct? I wish I had gone with my gut. I tell you, I hate having to deal with the yearly or twice yearly MRIs and the stress that all that entails. In my opinion this stress is an awful lot to deal with. I so wish my tumor was gone. I know it's acting up right now, I have wierd symptoms again so who knows, it could be that it's shrinking or growing, never the less, it is bothersome. I have had contact with two people who were so very happy with their results from House and they both had great, really great outcomes. Lucky that you get a face to face with Dr. Slattery . Good luck.
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I have to concur with Bruce :-* as for those of us diagnosed with an AN will need to be monitored for the rest of our lives, regardless of treatment. These suckers, on occassion, can regrow and not a darn thing we can do to prevent a regrowth... so all we can do is hope and pray that our initial one is the only one in our lifetime and we should never have to endure again. In choosing CK for myself, I already knew that I'd be MRI'd in my lifetime (or whatever better scan may crop up when I'm old and feeble and being pushed around in a wheelchair by my younger spouse), but you know what? It's ok. If I have to endure MRI's/scan the rest of my life, heck... I sleep through MRI's anyway.
Hang in there..... you know what is best for you.......and yes, we do know what it is to walk a mile in your shoes. Remind me to have the shoe soles re-done :) Been a rough ride for us all.
Phyl
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nikynu...
However, we have many more members here who wish they had gone the radiation route because of the serious side effects they had post microsurgery. No matter what choice a patient makes, there are no guarantees.
Bruce
Bruce, You have to understand that there are many more surgical patients on this board so sure there's gonna be more unsatisfactory results. Many of those patients had to deal with large tumors where radiosurgery was borderline or just fearful. There are so many AN patients who have never logged on to this board. Many of those have MRI's every 3 years or so and don't look back at all. My primary care physician is one of those people. He had surgery 10 years ago after suffering severe vertigo. There are many more good outcomes then this board reflects. I stick around to support those who feel surgery is best for there situation. These people sometimes leave the board in fear, proceed with surgery and lose all the support that they deserve. Nobody here wants to be debated. They just want to gather facts and read some stories "good or bad." Maybe even make a friend along the way. Not every surgery is a nightmare as you would lead them to believe. No doubt, it's a major surgery and I can understand why some elect not to have surgery especially those with pre-existing conditions. However, asking radiation to control a tumor up to 20 or 30 years is asking alot in my opinion. Then if you repeat the treatment you may make things worse and have start the follow up phase once again. This is why some surgeons state that surgery is sometimes the preferred treatment. Don't take this the wrong way. I am NOT oposed to radiation. I do a lot of research on the internet and yesterday I read a story on how Cyberknife saved this woman's life. She had many tumors and Cyberknife enabled her to walk away a few days following treatment totally escaping multiple surgeries. It's a blessing for many people. I'm just not sold on it's use for acoustic neuroma. These are solid benign tumors unlike cancerous lesions. There are possible long term effects and require many years of careful follow-up.
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Thank you Flyers Fan for your honest reply. I have found the reponses on this site quite disturbing and am about to disengage from it because it has only served one purpose for me. If you look beyond the dramas, judgements and "have-to's" you will find a wealth of good doctors. You are very right that most people have had the surgery and not radiation. But, as I have been trying to tell everyone is that radiation has many risks and that is the truth. Wheter they like it or not, I am the product of post radiation permanent side effects. which by the way, make my future treatments if necessary, much more difficult. I am also a nurse and married to a doctor so together we have alot of knowledge available to us. I was looking for support on this site but I haven't gotten it. Thank you for your response. It was well received.
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Bruce, You have to understand that there are many more surgical patients on this board so sure there's gonna be more unsatisfactory results. Many of those patients had to deal with large tumors where radiosurgery was borderline or just fearful. There are so many AN patients who have never logged on to this board. Many of those have MRI's every 3 years or so and don't look back at all. My primary care physician is one of those people. He had surgery 10 years ago after suffering severe vertigo. There are many more good outcomes then this board reflects. I stick around to support those who feel surgery is best for there situation. These people sometimes leave the board in fear, proceed with surgery and lose all the support that they deserve. Nobody here wants to be debated. They just want to gather facts and read some stories "good or bad." Maybe even make a friend along the way. Not every surgery is a nightmare as you would lead them to believe. No doubt, it's a major surgery and I can understand why some elect not to have surgery especially those with pre-existing conditions. However, asking radiation to control a tumor up to 20 or 30 years is asking alot in my opinion. Then if you repeat the treatment you may make things worse and have start the follow up phase once again. This is why some surgeons state that surgery is sometimes the preferred treatment. Don't take this the wrong way. I am NOT oposed to radiation. I do a lot of research on the internet and yesterday I read a story on how Cyberknife saved this woman's life. She had many tumors and Cyberknife enabled her to walk away a few days following treatment totally escaping multiple surgeries. It's a blessing for many people. I'm just not sold on it's use for acoustic neuroma. These are solid benign tumors unlike cancerous lesions. There are possible long term effects and require many years of careful follow-up.
flyer, I agree with you on some points and respectfully disagree on one or 2 others... (I love a lively conversation! :) )... what I have bolded/red, to me, actually applies to those that have had micro-surgery as well... not just the radio gang. Micro-surgeries can have outcomes that are not so good.. and yes, same with radiation. To me, when folks make their own personal choice of treatment option (should they have the option), we all have to take into considerations the risks involved. As we all know, nothing is guaranteed in life and it also applies to our treatments, regardless of which route.
Just my 2 cents... I had high-octane coffee this am.
Phyl
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Thank you Flyers Fan for your honest reply. I have found the reponses on this site quite disturbing and am about to disengage from it because it has only served one purpose for me. If you look beyond the dramas, judgements and "have-to's" you will find a wealth of good doctors. You are very right that most people have had the surgery and not radiation. But, as I have been trying to tell everyone is that radiation has many risks and that is the truth. Wheter they like it or not, I am the product of post radiation permanent side effects. which by the way, make my future treatments if necessary, much more difficult. I am also a nurse and married to a doctor so together we have alot of knowledge available to us. I was looking for support on this site but I haven't gotten it. Thank you for your response. It was well received.
I am sorry to hear that you are not pleased with the discussions that occur here. As you note, since you and your spouse are in the medical profession, you know that life holds no guarantees, treatments of any sort for any disorder hold no guarantees... and life is filled with risks. I'm sorry to hear your FSR has not be producing the results you seek and can well understand your frustration and feelings about it. However, I also have to believe that for many of us that have taken the radio route and that are seeing positive outcomes, it provides many newbies here the opportunity to see that it works for some as well as, unfortunately, not the same for some others.
My hope is that someday down the road, the medical community will produce a treatment option for AN's that will make life easier on us all... it's a hope, but I don't see it happening, so, this forum website provides insight into the good, the bad, the ugly. I see it as a reality check to remind all that we do the best we can, we choose (if given options) the best we can... and most of all... we thrive as best as we can.
I hope you continue to participate on this forum board. All inputs are respected and the sharing of info (good and bad) is very valuable to many that seek info here.
Phyl
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Phyl,
Let me say this! I mentioned this in a seperate thread. During the months I had my tumor it drove me nuts. My wife told me that you will never ever relax if you don't have the surgery. She was right and I knew it. She said that she would get it out too. Although that made feel better I knew it's easier to suggest what one might do especially when your not actually in that situation. The truth is that every ear, head and jaw pain I did encounter was blamed on the tumor. The ear pain was no doubt the source but I never had proof the other issues were related. I knew that tinnitus was gonna be with me forever no matter what although it's no worse following surgery and if anything has eased some. Since I always used to blame things on the old tumor I know I would have blamed even more on radiation. Yes, there is follow up for both treatments but if I have an off day I don't blame it on the tumor and cannot blame radiation because I never had it BUT if I did have radiation I would have been the type to get MRI's sooner rather than later whereas with removal I don't feel that need and have that relaxation. This might be considered a small tadeoff to avoid surgery but not for me. This is my peace. There are some opposed to surgery in most tumors under 3cm. but if you've never had any treatment whatsoever how can you speak from any experience? How can you endorse radiation 100% based upon short follow ups. The results of radiation are seen over time. I never understood why there are never anyone 7-10 years post radiation patients on this board. This concerns me. Where are they?? Are they happy?? In closing & In my opinion, there is no doubt closer attention needed regarding follow ups for radiation than surgery and would have been especially true in my case. Remember, this is a support forum to help those in various situations offering unbiased help. For example..I cannot help those with eye dryness because I don't have that problem so I leave that to the other fine people here on this board. My experience is surgery and this is what I know. I know where I stand!
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Flyer, I will not participate in a heated debate over which is right for some and not for others. As I am the 2nd sibling in my family to have a brain tumor, trust me, my family's attitude is the same as your's... "if it don't belong, cut it out". Yes, I agree that we all speak from our own individual situations, thus, we must also be open-minded to what others share. Many that I know that have had radio have done well and have moved on with their lives. Many remain here to support those that are just diagnosed and need to hear of experiences on all levels, but in all fairness, many that have had radio do not participate as they do well, life moves along and they choose to support in means that suits them. Those of us radio-posties that do remain do so from the heart to help others with research and support, regardless of what treatment options are done.
We try to remain as unbiased as we can out here. Doesn't always work. I commend you for sharing what you do about your micro-surgical perspective/experience. Know, that in fairness, the radio-patients are here for the same reason.
P
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The one thing I dislike about this board (two actually):
1) Most of the time a post will occur and somewhere down the road it takes a turn. If we really are here to help others based on our experiences it would be beneficial to keep the responses "on-track". Look back on some "threads" you will see it happen time and time again. I've just added to the insanity.....
2) I found this site only because I had an AN.
Joe-
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On an earlier thread by a radio patient..."No one asks for this and there is no silver bullet". I always remember this!
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Phyl, no heated debate only a spectrum of views.
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Joe,
This board needs all the members it can get. Share your story good or bad. There is always someone that will relate and appreciate anyhting you can offer.
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Joe, When posts 'take a turn' it's just because we're human, but eventually it gets back on track.
Luckily, this kind of stuff doesn't bother me at all, I kind of enjoy the transgression at times.
We're all in this together, let's remember that.
This forum can go wherever it wants, long as I have it to rely on.
I truly believe the people here saved my life;
having facial paralysis, etc., post surgery, I had thought about the big S, believe me, I got that far down,
then I found this site & it truly is lifesaving & lifechanging.
Best wishes, Nancy
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The one thing I dislike about this board (two actually):
1) Most of the time a post will occur and somewhere down the road it takes a turn. If we really are here to help others based on our experiences it would be beneficial to keep the responses "on-track". Look back on some "threads" you will see it happen time and time again. I've just added to the insanity.....
2) I found this site only because I had an AN.
Joe-
Joe....
1. Welcome to the wonderful world of the internet. In my experience, you will have (what I deem as) lively dicussions, regardless of what discussion boards you are on.....
2. As did I and many here.. and thank gawd I found this site since it was everyone's inputs, regarding all treatment options, that helped me make the best, well-informed decision I could for me. My hope is that everyone that contributes here with experiences and knowledge will be taken to heart by those newly diagnosed. No one said this journey was going to be an easy one but heck, if it wasn't for the ANA and this site, I know (for me) I would have been truly "lost" in trying to find what would work best for me.
It is great to have you here and hope that your continued contributions to the site will bring insight to others in our shoes.
Phyl
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Phyl, no heated debate only a spectrum of views.
Agreed :) And that is what I love about this board... we can agree to disagree, but we do it respectfully, wtih all inputs highly respected :) Let's go for a drink. I think it's cocktail hour somewhere in the world and we can continue this over drinks and nachos (hold the jalapenos). Your thoughts/inputs are highly regarded, just as is everyone elses :)
Phyl
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Very "spirited" conversation--love this when it happens! Keeps the balance.
Oto, sorry to hear you're in "the club", but happy to hear you have reached out....you're still there aren't you? Anyway, I had surgery two plus years ago. Went the road most of us do as we are people who take action and through this we gather as much info as we can in order to make an INFORMED decision. I too interviewed with neurosurgeons and Nuero-otologists, read as many articles as I could before making MY decision. I researched surgery and radiowhatchamacallit's (sorry my thoughts went array), my husband and children leaned towards radiowhatchamacallit, I had no opinion/feelings at that point. It was at my interview with another doctor and it was when I shook his hand, looking into his eyes that I knew, deep inside, my gut, whatever, that surgery will be MY WAY. He knew I was having great difficulty in making my decision and his words, I will never forget, stay with me today, "There is no wrong decision here." Love that! There are pros and cons with both "ways". Your decision will be based on information given from those of us that have the "experience". You know what to do in your heart. I along with all of us are here to support you and I look forward to hearing about your decision.
Either way, you have the BEST location to recuperate in! SIGH. Went there on our honeymoon and made a return trip once more.
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and one more thing OTO...... ;--) I have been teaching yoga for over one year at our local fitness club. I do have residual "issues" and have learned through this forum that other people have them too and have learned to accept them. I have leaned on people hear and bent their ear with my "issues". I would really love it if the doctors would use our post experiences to better their approach in educating their patients before and after their treatment, whatever that will be. Seems they/people are afraid to "say the negative" as they may now have the same symptoms suddenly?! WHaaaa.
Hey, who's drinking! I want in on that one Phyl, skip the jalapenos though--burp!
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and one more thing OTO...... ;--) I have been teaching yoga for over one year at our local fitness club. I do have residual "issues" and have learned through this forum that other people have them too and have learned to accept them. I have leaned on people hear and bent their ear with my "issues". I would really love it if the doctors would use our post experiences to better their approach in educating their patients before and after their treatment, whatever that will be. Seems they/people are afraid to "say the negative" as they may now have the same symptoms suddenly?! WHaaaa.
Hey, who's drinking! I want in on that one Phyl, skip the jalapenos though--burp!
Ya know, in what I have noted in red in your quote, I've noted this to the Director of the ANA for possible discussions at the sympsium. :)
...and yes, skip the jalapenos..... stomach can't take it :)
Phyl
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As you all can see, I am watching this thread VERY carefully.... I recommend everyone keep on track based on the opening post by one who just joined us here. I remind everyone that we can agree to disagree and be respectful of it.
Thank you all for your cooperation.
*cracks bullwhip* ;)
Phyl
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Hi OTO (and all other members),
My husband was diagnosed two weeks ago with a right side AN, measuring 3.3 x 2.8 x 2.2 CM. His only symptom is progressive reduction in hearing on that side. Unfortunately, his left ear has no usable hearing (since childhood), which makes the decision of how to treat this even more challenging. He is otherwise, a very healthy
63 yr old psychiatrist, who has no plans for retiring anytime soon.
We are researching very carefully what options exist. He met with Dr. Sisti this week in NYC. Basically, his recommendation was watchful waiting. While this removes the burden of making a decision at this moment of what to do, it leaves me with many questions that I'm not sure can be answered. For example: Watchful waiting until . . . what? . . . Until his balance is affected or until he loses all of his hearing? Until he has facial paralysis or trouble swallowing?
I guess my frustration stems from the fact that you can read all the statistics you want. However, statistics represent populations, not individuals. The whole thing feels like such a roll of the dice, no matter what option you consider. Does anyone have any words of wisdom or suggestions? Any help will be appreciated.
Linda
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[color=orange]Steve...
I really take exception to this comment of yours. It is simply untrue. I think microsurgery is a viable option; however, I do have a problem with doctors who needlessly funnel some patients in that direction by not telling them the truth and feeding them myths and half-truths.
They believe in their own trade both radio & surgical.
I would personally be very upset if after-the-fact I found out that a doctor had taken an option off the table that I may had otherwise chosen.
True, nobody can argue this!
As I have mentioned in many posts, I am not here to decide or tell an AN patient what to do. I am here as a fellow ANer and patient advocate.
Me too.
I have received thank-yous from patients who otherwise would have not opted for radiotherapy. Therefore, I feel I am making a positive difference in the lives of some. That is what support groups are all about.
You may be making a positive difference but we shouldn't rush anyone to shut any doors too fast. There are pros and cons of each treatment and depending on numerous factors they should all be considered.
Our friend here from Aiea, HI, OTO, has an AN under 3cm and is leaning toward microsurgery. I support his decision 100%! I am not trying to persuade him to go the radiation route. He has received no email from me. I respect his decision.
No email from me either, I wouldn't do that. Decisions should be based upon research, patient & family preference and proper guidance from professionals and support groups combined.
Where I usually chime in is when I see erroneous information being told to patients by doctors, or when AN patients post incorrect statements concerning AN treatment and what they believe to be facts that in actuality are not. Since many people lurk and do not post, it is important that these errors are corrected.
Okay ![/color
Also, the idea that I lead patients to believe every surgery is a nightmare is totally bogus. We have many good outcomes posted here, and I am sincerely happy for all those who brave surgery and have good outcomes.
Understood!
By the same token, I am not going to sugarcoat the fact that surgery is invasive and carries with it longer recovery times and more serious side effects. Like it or not, those are the indisputable facts.
There are short & long term effects from both treatments!
Everything I post, I back up or can back up with empirical data gathered from peer-reviewed scholarly journals.
Yes and all literature should be viewed with a critical eye
I do my best not to provide links to biased webpages or self-serving articles.
Me Too. But remember, if someone has a great deal of interest in House or another leading institution that does surgery then we should provide that information too.
The bottom line is that no option is right for everyone, but all options are right for some. We need to help our fellow ANers know the truth, so they can make their own darn choices.
Of Course.
One last thing, it hurts me to see anyone suffer, especially needlessly. Having an AN is bad enough. People have their reasons for making their choices, so I don't judge them if they make choices that I probably would not have made.
I agree except where you state "that I probably would not have made that choice" sometimes certain remarks become offensive.
My mission is not to steer patients into radiotherapy. It is to help them make objective treatment choices, to pray with them, to encourage them, to cry with them, but mostly to support them.
I respect that.
Steve, I hope we have reached some kind of an understanding here. Btw, I support YOUR choice to have surgery, and I am glad that it was successful for you. You have a valuable story to share, and it does add in a positive way to this community, especially for those who want to have surgery. Take care..
We both have only good intentions ...Take Care & Enjoy The Weekend!
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Linda,
Regarding this very unique situation I would contact House (link provided). I am sure they have probably dealt with this before.
http://www.houseearclinic.com/
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To All "Just Diagnosed" ANers,
There is NO wrong decision. Reading this thread all choices have been covered well. Yes, it is up to the patient to decide and here is where the difficulty comes when the patient is of the thinking "I need to make the RIGHT choice in treatment." There are NO wrong choices.
Read all regarding your three options and sleep, sleep, sleep on this. Interview doctors in all fields. Then sleep, sleep, sleep on that. Go with your decision knowing you did your very best, know you CAN/MIGHT have complications with recovery in any choice. There are those that have very little issues after AN treatment and heal back to there old self as if nothing happened. There are those that have issues after AN treatment and heal slowly but still move forward in their progress. The worst choice is "no choice".
Be sure you are not looking for someone else's choice to be your own, make sure your choice is "your choice". Can't decide yet? Sleep on it until you can, or write down your info, doctors views, and yours. Maybe this can help. There is no hurry--for most of us. Remember WE do not have the answer to your decision, only information. You cannot blame anyone if your outcome/treatment has complications, you cannot blame even yourself as you have or will read we all heal differently. Yes, this does make your decision hard, but sleep, sleep, sleep on it until you are comfortable with your choice.
When we read about someone else having the same issues it calms us knowing we are not alone. Do not look to this forum to make your decisions only to educate you and to be "here" when and if you need to talk.
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Arushi,
All that I can say to your post is: "Amen".
Flier58
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Good advice on everyones post. It is after all an individual decision, and I too, hope that I only provide the facts that there are many options available for each individual.....although confusing at times, I would rather know all the choices avaialbe to me, so I may then decide which route is best suited for me...just as there are many cars on the market, there are many choices of treatment.
we are all here to support, gripe, cry, rejoice together.
Ceeceek
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Just want to add: once you have made your "informed" decision on the treatment choice, you must stick with it and do not second guess. It will only make you anxious and wonder if you have made the "right" choice. Just do your best research, then go with what you feel comfortable and most important of all, be optimistic. A positive attitude will get you through anything! I always say, "things happen for a reason!"
Cheers!!
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Mary-
I couldn't agree more. Once you decide on a treatment stay positive and optimistic (something I never was prior to being diagnosed). As you can see we took different surgical methods to battle the AN, but have the same views on attitude going into and after surgery.
Thanks again Mary.
Joe-
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Honestly my Otologist (sorry about the spelling) discussed all options and left the decision up to me. He neither swayed me one way or other. I am positive that if I had decided on Gamma or Ck he would have directed me to the proper professionals to discuss this procedure further, as he has done with my decision for microsurgry. Opting for microsurgery was not an easy decision and is still very difficult to imagine. But then this "thing" is hard to believe it really is in my head and could qutie possible grow more.
But I had already been online. I had read articles and such regarding both radiation and microsurgery. All my doctor did was solidify my decision.
I think that either or have their own issues....... it is a matter of personal choice.
I see my neurosurgeon tomorrow. I am excited to finallly meet him and discuss this further and get my date set and yet I dread it..
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Hello
Everyone... I didn't mean to stir up such a heated debate... Anyway thanks for the information, support and the passion. Everyone here is going through a lot, and obviously wants to share their experience and thoughts. I appreciate it. I did have my consulation with Dr. Slattery here in Honolulu (I was amazed at how crowded the waiting room was... there must be alot of AN'ers getting their follow-ups).
I drop in when I figure out where this road is going...
Mahalo, OTO
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It is always a hot topic when you are discussing your BRAIN>...remember most of us only have the one,
I believe we all only wish to provide our experience and the feeling of support that you are not alone, you will survive and we are all here to help if needed. Take what advice you want, throw away the rest.
Keep us posted and just remember there is no absolutely right way of treatment other than what is best decision for you.
Ceeceek
if it helps, a treatment option recommended for me,if I did not need a biopsy was a fractionated radiation therapy, but this particular type of fractionation would require 30days in a row in a facility over 90 miles away. On that fact alone I decided that I would pursue other options as it was not realistic for me to travel and miss work for 30days....so sometimes you have to take your actual day to day life into consideration too.
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Aloha Oto- thanks for starting a really good thread! And I'm sorry that you have to deal with being diagnosed with an AN. Although we are all passionate about our personal desicions, I do think it's nice to see that people care enough to take time to write on a website. I have a thread going "Beginning stages of Research". I had decided after 3 consultations all reccommending surgery- that this was the only option available to me, only to be convinced that it wasn't after talking with a fourth doctor who was both a radio and neuro surgeon (And as you can see from the thread, I'm glad people were passionate). For me cyber knife was a great option as I really wanted to avoid surgery from day one.
However, if you are comfortable with surgery- you should do it. Arushi said it best, sleep on the information- surprisingly the more you research, the clearer it will become to you what is the best option for you. Hope all is well- Take care, Annie