ANA Discussion Forum
General Category => AN Issues => Topic started by: rupert on January 01, 2010, 12:57:31 pm
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I have been going through the posts on this site and am happy to see good info and great concern for people with AN diagnosis. I myself have an AN that is 1.6cm
by 2.2cm. I am scheduled for surgery at UPMC on the 25Th. To say that I am starting to get cold feet would be an under statement. I am actually alright with the surgery procedure as I am intrigued by modern medicine and technology. When I was first diagnosed and started researching, I was confident that the Gamma Knife was right for me. After talking with the surgeons though, I thought surgery was what I needed to do. ( get it out). Now I am not sure I want to handle the possible quality of life complications that occur after surgery. I have read through a lot of the posts on this forum and it seems most (not all) people experience some quality of life issues after surgery. My first question , would be this. Of the thousands of AN surgeries every year, do most people have some kind of quality of life issues or do they just happen to some . Having not been through surgery yet I sure do feel for those that have issues. I am just trying to find out if they are the norm.
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Hi Rupert,
I don't think it's the norm for quality of life issues to occur, I think it's the exception. There are loads of people, a lot of them on here who have quality of life issues following surgery and radiation and they're still rocking it, still loving life and still getting on with it. There are even more of us who have no quality of life issues, or whose quality of life has improved following treatment and are also rocking. Believe in your treatment choice, be strong and be confident that your surgeons will do all they can to preserve your quality of life. You can rock it Rupert like the rest of us have!
JB x
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Hi Rupert and welcome to the Forum.
I'm not sure what you mean by "quality of life complications" but I can tell you that there is life after AN surgery - and the majority of us are shining examples of that.
Yes, some have "complications" - I'm SSD (single-sided deaf), others have facial nerve issues - but that doesn't mean life isn't worth living or is somehow compromised.
Life is what you make of it. Many "posties" on the Forum run marathons, others do standup paddle-boarding. Most of us haven't had to change our lifestyle at all long-term
As for treatment options, it's pretty much a personal choice. My neurotologist gave me the choice of radiation or surgery. Although I initially thought I'd go with radiation, I ultimately picked surgery for various reasons and never looked back. It was the right choice for me and I was confident in that choice. I was confident in my doctors as well.
Although your surgery is scheduled for the 25th, if you truly are having second thoughts, it's not too late to postpone it and investigate GK more.
Just my opinion,
Jan
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Hi Rupert and welcome to the Forum!
I think that the "safest" answer to your question is "everyone experiences different results"...I had surgery 14 years ago and had a lot of complications, but I think that with all the medical advances, most of those have been worked through. Even though I did have a lot of "complications," I have a VERY active and wonderful life now. I, personally, think that attitude plays a HUGE role in recovery (that & HUMOR!)!! If you have any specific questions, please feel free to ask us all or PM me!
K ;D
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I hope I haven't offended anyone. I was definitely not implying , that if there are complications life is not worth trying. On the contrary, the posts I have read are an inspiration and show true spirit no matter what the situation. I was simply wanting to know if long term complications are to be expected. The Dr.'s have certainly gone over effects after surgery as possibilities. I am aware every situation is different. Patient surveys that I read always seem to show complications. I just wonder how many people on average go through AN surgery with no long term complications ( 3months - 1year). 1 out of ten , 2 out of ten etc.
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Hi Rupert,
You might be interested in looking at the results of a survey taken last year. Of course, the only people who did this survey were ones from this forum. It's certainly not a survey of every AN patient! ;)
Sue in Vancouver, USA
http://www.anausa.org/pdf/patient_survey.pdf
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Rupert -
I can't speak for everyone here, but I didn't find anything offensive in your post. I hope my answer didn't make you think I did.
Anyway, the answer to your question regarding complications is - everyone is different and our AN journeys are unique. It's the same way with diagnostic symptoms - what may have prompted you to have an MRI might not be what prompted me to have one. Some people have hearing loss, some have facial nerve weakness, some have vertigo, etc.
There are certain similarities in the world of ANs, but we all recover differently, and we all have the possibility of encountering side-effects. No one can tell you for sure which side-effects you will or won't get from either radiation or surgery - which, in my opinion, makes the treatment decision harder than most.
The good news is that side-effects for the most part either go away over time or can be "solved" in one way or another. For example, while I will never have normal hearing in my left (AN) ear again, I have found a solution in the form of a BAHA. Others may find their solution by using a TransEar or by just learning to adapt to being SSD.
Hope this helps,
Jan
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Hi Rupert,
I think you are getting the message, but I will repeat it anyway. :)
If you have surgery, you will lose a balance nerve on one side. So you will have some sort of complication. However most people find they adjust to that quite well. Stoneaxe is probably out paddleboarding in icy waters even as we speak.
The best surgery outcome I always think of is Ann (Desilu), who had a "perfect" middle fossa at House: 100% hearing preservation, no facial, headache, or other complications. I met her at the symposium in Chicago in August. She is doing great, but is still aware that she had an AN and had brain surgery. It is never the case that you wind up feeling like it never happened.
The main thing, though, is that the quality of your life can easily be just as good, and may turn out to be even better. Something about having an acoustic neuroma seems to bring out the best in people, as you can see many times over right here on this forum.
So, as for your concern that "I am not sure I want to handle the possible quality of life complications that occur after surgery," I'm sure you will be able to handle them. And the same would apply to radiation treatment if you change your mind.
Steve
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Thanks for the advice. I have only been researching for a couple months and I know many on this forum have been acquiring info for a long time. The information on this forum is great as it is from people with a lot of experience with this issue and care enough about others to pass it on. My dilemma is , as with many on this site. I am within the parameters for Gamma Knife, but have surgery scheduled. I have a phone consult with my surgeon on Mon. He said his door was always open to talk so I will take advantage of that before I make a decision to cancel. My family doctor is helping me out with some meds to take the edge off, otherwise I can't go ten minutes without an anxiety episode. I know getting the most info you can is best, but in some way it is too bad you couldn't be diagnosed on Mon and have surgery on Tue.
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I guess I should have mentioned this in my first post. I have already lost most all usable hearing in my right ear as well as having some facial numbness. So yes, I am dealing with those issues and they are not that bothersome at this time.
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Rupert .....
Adding my welcome and you were in no way offensive in your posts ..... you are going through the same anxieties that most of us did between diagnosis and treatment. I had retrosigmoid surgery for trigeminal neuralgia at UPMC over 15 years ago ..... it is an excellent facility. Then my retrosigmoid surgery for the AN was almost two years ago at Duke. I had much anxiety both times, although the second time I was strangely calm the day of surgery. The feelings you are having are perfectly normal.
Re: post-surgery issues. So much depends upon exactly where the AN along the vestibular nerve started growing and which direction it is expanding. That is why most of us have to be vague in our answers. Since it is actually a vestibular schwannoma everyone's balance is affected to a certain degree. Since the brain compensates for this injury by shifting the load to the other side, patients often find they have already begun compensating before treatment and have little problem with balance. Others have a little longer to adjust following surgery. One thing to keep in mind is that as the AN grows, more things will be affected so it is probably best not to wait and watch too long if it is indeed growing (some virtually stop growing for months at a time).
I agree that I wish the wait did not have to be so long ...... that is the agonizing part. Try to relax and busy yourself with as many other things as possible. ..... and stay in touch with us, we understand like no one else can.
Best thoughts and prayers for peace with your decision.
Clarice
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Hello and welcome, Rupert ~
Your anxiety is quite typical for an acoustic neuroma patient facing scheduled surgery and becoming acutely aware of possible negative ramifications. However, although non-invasive (no cutting), radiation, be it GammaKnife, CyberKnife , FSR or some other variation also carries inherent risks. If it didn't, I doubt anyone with an AN under 3 cm would even consider surgery, yet many do. Each approach (surgery, radiation) has it's own distinct drawbacks and advantages, as you know by now. Frankly, as much as I value research (and have done quite a bit) all the AN information in the world won't give you any kind of guarantee of your outcome, no matter what form of treatment you ultimately choose. My usual advice to someone seeking answers is to choose a very skilled surgeon/radiation oncologist with lots of experience dealing with ANs. Know exactly what his (or her) long-range plan is for you and don't ever be shy about asking pertinent questions of any doctor that is going to be working on your skull, be it with surgery or radiation.
Once you've settled on a treatment, doctor/team and facility, you need to 'let go' and put your trust in that doctor and his team. That is easier said than done but most of the folks posting on these forums did just that. I did. Like many, I was rewarded with a great surgery outcome (no complications) and 90 days later, uneventful but successful FSR treatments that seem to have accomplished their goal of destroying my ANs ability to survive. While the tumor is in it's 'death throes', I'm doing just fine, thanks. :) I join the many AN patients who, while perhaps not 100% 'unscathed' by major surgery and having radiation beams shot into my skull, did not suffer any real or permanent quality of life issues.
As others have noted, the fact of being diagnosed with an acoustic neuroma and having it addressed, whether by surgery, radiation or both (in my case) is not like having a gallbladder removed or some other simple, straightforward surgery that you undergo, recuperate for a short time then resume your normal activities exactly as you did before the surgery. Every AN post-op patient has some reminders of what he or she went through. I had a splendid outcome but still carry a few very minor deficits that are invisible to others and that I don't allow to impact my enjoyment of life. Like so many, I'm SSD but cope with it fairly well, I think. Other AN post-op patients acquire a BAHA and that basically solves their hearing problem.
As with any other challenge in life, we all approach our individual AN experience, with or without complications, a little bit differently. These forums exist to provide information, advice when requested and support without reservation or judgment as our members deal with their AN issues, including the emotional turmoil you're facing as your surgery date draws closer and the reality of the seriousness of the situation begins to reveal itself to you. All I can add to what others have cogently stated is that many (AN surgical patients) have gone before you, the majority do quite well, post-op and no matter what happens or you decide, we'll be here for you.
Jim
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Hi Rupert!
Welcome to the Forum (but sorry you had to join this exclusive club...)
I am in Watch & Wait, so i cannot answer your questions about surgery.
However, as others have pointed out, do your research and 'go with your gut.'
Many that have had surgery have done fine, even with a few 'bumps' along the way.
Do you have some family, friends, etc., to help you through the initial post-surgery period?
Please keep us posted, we are here for you!
My thoughts and prayers are with you during this time.
Sincerely,
Sue
PS Are you going to Pittsburgh? I am from PA originally, but live in the top of Virginia now.
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suboo73. Yes, that is where the procedure is scheduled. UPMC Dr's Hirsh and Gardner. I live about 4 hours away in NY. Always wanted to live in PA though. I am only four miles from the border.
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Rupert,
Hi again! Sounds like you are getting things lined up - and i hear great things about UPMC!
Do you have your date on the AN calendar?
BTW - I think if you only live 4 miles from the border, you qualify to be an 'adopted' Pennsylvanian!
Sue
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Actually I spend more time in Pa. than in NY. At this point I still may back out of the surgery. I will be closer to a decision after my conult on Mon. The problem is the surgery was scheduled rather soon and although I have researched Gamma Knife a lot, I have not met with anyone in that regard. I don't believe it will be possible to talk with those Dr's before my surgery date so if that is what I decide I will have to cancel the surgery. Talk with the GK people and then if it doesn't work out for some reason. I will go back and reschedule surgery. I know a lot of people say to go with your gut. Right now my gut tells me I may be making a mistake with surgery. I guess the only down side is that it would push the surgery out another three months possibly.
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Rupert,
Since ANs are slow growing and benign, i think you have time to complete your research.
If your 'gut' tells you different, you have time to continue weigh all your options.
Many thoughts and prayers to you!
We know what you are going through.
Stay strong.
Sue
PS I sent you a PM.
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Rupert,
I think being confident in your treatment choice is pretty important, so unless there is some reason it needs to get treated right away, it will be worth it to take the time you need to reach that level of comfort. You might be able to cancel the current surgery, and go ahead and schedule another one in say February. Then have your consultations and if you decide on GK, cancel that surgery too, but if you decide on surgery, it would already be on the calendar.
Keep on truckin', you will get there.
Steve
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Rupert -
I'm a big believer in "going with your gut" and IMO you need to be comfortable with your decision. If you think radiation might be a good option for you, you at least owe it to yourself to talk to the GK people. If it means postponing your surgery while you do your research, then I say postpone it. If you ultimately decide it's your best choice, you can always reschedule it at a later date. As Sue said ANs are benigh (99.9% of them in fact) and the majority of them are slow growing. You definitely have time to investigate all your options.
We're here to support you in whatever choice you make.
Jan
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I went with surgery I was definitely not very good with researching and in a way I think it was best sometimes less knowledge is good too much you over think it. I knew I went with the best surgeons in NY and trusted them I also knew that I wanted this thing out of my head. I was lucky the tumor was totally removed no facial paralysis balance was not bad, but of course some other complications SSD, headaches, tinnitus but there are alot of people who experienced this before surgery and after surgery and are able to compensate for it.
My prayers are with you,
Pat
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Hi Rupert,
Many on the forum have had surgery and would do exactly the same thing again, many have had radiation and stand by their choice, so usually it is not a matter of one being better than the other, but rather one suiting the needs of the patient, their tumor, and their personal preference better. What seems most important to me, though, is that whatever decision you make is YOUR decision and that you are at peace with it. That confidence really is critical to helping you face your treatment with a positive, got-my-ducks-in-a-row, torpedo-ahead attitude. By the time my surgery date came, wild horses could not have stopped me. I was sure and I was READY. If you need more time, to be sure and ready, take the time, and talk to other docs. Once you're sure that the treatment is the right one for you and that you've got the best qualified doctors working on you that you can possibly find, you'll be able to give your trust to them, and will be confident that whatever outcome you end up with will be the best you could have gotten.
Tammy
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Welcome,
Have been reading posts from others and can see that you've received all kinds of great advice, so just want to emphasize what seems most important to me:
make sure you feel ok within yourself about your decision, even if it means "inconveniencing" people who scheduled surgeries, etc. ...this is too important ... your attitude about your decision will affect how your body handles your recuperation
i chose gamma surgery...initially wanted surgery, but some other medical conditions caused me and my doc to re-think things...i took lots of time to research both options (here and on many other websites/forums)...[NOTE: make sure you have contacted the Acoustic Neuroma Association and requested their free info packet..it has great refs, and a list of folks willing to talk with you one-on-one via phone or instant message]..once i decided, i felt free, released from a lot of tension, and content that i had made the right decision for MY situation
i am happy with my choice, but what matters is that YOU are happy with your choice...this situation is certainly one where you need to put your needs front and center.... i'm glad i did not worry about offending surgeons and staff i interviewed...the best thing i did was get organized and persistent about askiing lots of questions, including the obvious, silly, dumb, etc....whatever you want to call them...the dumb and silly ones were the questions that helped me most in making my decision...because i could watch/listen for the reactions of those people answering them...persons who could not empathasize with my need to understand fully were the first ones i eliminated..believe me, there are physicians who are both empathetic AND highly skilled in dealing with surgery and/or gamma kinfe treatment...you will find the right combination and your gut will let you know...
there are lots of good folks here to support you
tricia (horsekayak)
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NOTE: make sure you have contacted the Acoustic Neuroma Association and requested their free info packet..it has great refs, and a list of folks willing to talk with you one-on-one via phone or instant message]
Rupert -
this is a very good point from Tricia. The ANA literature is very helpful and so is the WTT (willing to talk) list - although I'm tooting my own horn a little here, because I'm on it :D
Seriously, these are two very good resources that I usually mention to newbies, but forgot to mention to you. I'm glad Tricia remembered.
Thanks, Tricia :)
Jan
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Welcome Rupert,
You've come to the right place. Everyone on here is so willing to help, talk, vent with, gain knowledge from, etc. It's a HUGE help.
I wondered the same thing prior to treatment. Firstly though: regardless of your specific outcome, you WILL carry on and have a great life. There are shining examples of that throughout the board. As someone who came out with minor 'effects' afterwards (ringing in my ear and some reduced hearing), I need to tell you that it's sometimes hard to come on here and post that exact thing for fear of sounding like you are boasting. It's a tricky thing. One one hand you want to make it known loud and clear that you CAN come out of this doing excellent. On the other hand, every time you do that you feel like you are rubbing it in. I suspect I'm not the only one that feels that way. And my *guess* is that many of the people that come out of it relatively unscathed move on with their lives and don't come back to the board very often. That truly is a guess though.
I certainly don't come as often as I used to (or should.....) but I like to stick around to give hope when it's needed that things can be A-O.K. afterwards. I was CRAVING that reassurance prior to surgery, and lapped up any post I saw with positive news.
Good luck to you!
Adrienne
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So much great advice, so many nice people. Thanks everyone. I never have been much of a poster. Actually I only post on one other forum (very little) and that is not related to anything medical. Talking with people here though seems natural and easy. I will probably ask some more specific questions in other parts of the forum. Might even start using the emoticons. Thanks again . Bryan
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Yes, this place is terrific, isn't it? I did a TON of research before I made my decision on what kind of surgery and where. I did notice one thing while I was in the hospital: It was VERY clear those who did their research and those who didn't. It seemed to me like those who did their research like most of us on here were more at ease and not so nervous compared to those who didn't do a lot of research. Knowledge IS power! :) Good luck to you and continue to post and/or vent!
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Hi Rupert,
I see you've gotten a lot of good advice from several wonderful people in of our group and really don't have anything to add other than to say that I'm sorry to hear you have an AN but am glad you found us. If you decide that surgery is definitely not for you you should look into your other options. Treatment choice is not an easy thing and you should be as informed an comfortable with your choice as is possible. As Sue pointed out, ANs are slow growing and benign. Since yours is on the small side, you have the time to take your time making that decision -- you will know, in the end, what is right for you. Initially I was leaning toward radiosurgery, then surgery and back again. For many reasons I just felt surgery was the right choice for me and I have no regrets. My only issues are being SSD (single sided deaf and this would have been the case with GK too since my hearing was pretty much gone prior to surgery) and a minor balance problem and I believe that will continue to improve. There is life after AN and it is good!
Best wishes,
Wendy
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Hi Rupert,
Welcome! I am awaiting surgery now, it is the 22nd. I can't say I am not nervous - scared - plus tons of other emotions!!! But - I have researched, probably tooo much and am as comfortable as I can be with my choice. It is defiantly a choice that has to be right for you. I did get a lot of info from this forum and the support is tremendous. Good luck on your journey.
Lynn
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Rupert,
Sorry to see that you also have an AN. You certainly have come to the right place! I did not find this place until 6 months after my daughter was diagnosed.
I see that Dr. Hirsch and Dr. Gardner is doing your surgery. Dr. Hirsch performs the cyberknife, also. You may want to talk to him regarding this procedure.
Good luck!
Cindy