ANA Discussion Forum
General Category => AN Issues => Topic started by: ColaBurns on November 03, 2010, 06:36:16 pm
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I was wondering if there were any other "young adults" with an Acoustic Neuroma and the size, location and prognosis of your tumor?
I'm 28, mother of 2 with a 4mm right side AN that was found "by accident". Mostly just having to deal with vertigo issues and sometimes headaches and facial twitching but no loss of hearing. The problem for me becomes whether or not to be "reactive" or "proactive". Do I "wait and watch" and hope this thing doesn't budge and learn how to deal with the Vertigo and headaches while knowing that there is a very very good chance this thing will in fact grow and become an issue. Or do I become "proactive" while I have very good insurance and a good job and have the surgery done to remove this thing before it can get bigger and do some major damage.
I'm just wondering what other people in my situation are thinking. Radiation is out of the question because of my age but do I really want to take the chance that I could have loss of hearing and facial paralysis within 10 years? I also don't want to take the chance of having brain surgery done if it would cause just as much damage.
Thanks for listening to my rant...just in one of those moods I guess :)
Cola
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Sorry to hear about your AN at such a young age. My Doctor did say he removed a 2.5cm AN from a women that is 28 just last month here in Texas. So you are not alone. And I do know there are people younger than you on these forums that had large ANs removed.
HEI (House ear Institute) in LA does free conciliation if you can send them a copy of your MRI. http://www.hei.org/ Considered the best in the world. Just call em up and ask them.
Good news is you caught it very early.
I'm not a Doctor or a expert. But I had surgery because my AN was up against my brainstem. And Cyberknife has a .2 mm drift that can happen.
As someone that has been threw surgery less than a month ago. I got two chest x-rays. Front and back. And two CT scans right after the surgery. That is allot of radiation that I got. And surgery is very ugly. Allot more than I thought. I figure I would be in more pain. But pain was not a issue. Its having my head opened up and messed with. And everything that goes with that. On top of all that. I can NOT taste any thing sweet. Everything I eat taste like crap. And that's from the IV antibiotics side effects. Can last up to 6 months. Then you have a ton of other issues.
Its nice having the AN cut out. But AN surgery is the most difficult in the world. And you have lots of risk going in. I came out very lucky.
I would like to have had cyberknife and wanted cyberknife but was not ment for me. www.cyberknife.com If I have regrowth I will get cyberknife done.
But please do what is right for yourself. Research everything you can. And do what your FEEL comfortable doing.
And I really hope you get your AN under control at such a young age. Good luck.
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But AN surgery is the most difficult in the world. And you have lots of risk going in.
Just wanted to note that although I'm not a doctor, there is no scientific proof behind this statement.
AN surgery is major surgery and it's brain surgery, but is it the most difficult in the world? I'm not so sure.
And while it's no walk in the park, I'm not sure I'd term it "very ugly" - that's definitely a matter of opinion. I'd have AN surgery again in a heartbeat. I've never regretted my decision.
All types of surgery involve some risk; it's just the nature of the beast.
Also, all the testing leading up to funnydream's surgery (two chest x-rays, two CT scans) are not always the norm. Although I did have a chest x-ray prior to my AN surgery (standard procedure at the hospital I had my surgery at), I've never had a CT scan.
Jan
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Cola~
Hello!
I was 25 when I had my AN surgery and did not have children yet, but went on to have 3 curly girlies. I have to disagree with Funnydream on this one. While AN surgery is not pleasant...& I had almost every side effect there is...I can think of people that are dealing with MUCH, MUCH worse situations...even some on this board. Is my life a little different than I thought that it would be? YES! Do I look different than I ever thought that I would at 40? YES! But I have a GREAT life (& I am ALIVE!) with my family and friends and wouldn't trade it for anything. I didn't have a choice about surgery because of the size of my tumor, but if I did, I would certainly look into CK or GK...I don't think that age really plays a part in it. I would encourage you to find a Dr. that does BOTH surgery and radiation and see what they say...I know that they are out there. Incidentally, I NEVER even had a CT scan until about a year ago - not before or in all those years that followed (obviously, I did have MRI's)!!
Again, this is a tough thing (& tough surgery) but I would hate for you to get the impression that it is the worst ever & be so scared because you have an AN. Like Jan said, "it's no walk in the park" by any means, but it is also very treatable and anything IMO is better with a good attitude and sense of humor!
If you would ever like to talk, just PM me with your number & I'd be happy to call you!
K ;D
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I am not a young adult compared to you, but I feel it is necessary to respond. There are three nerves that this tumor has an impact on, hearing, vertigo and facial nerves. Your vertigo and facial nerves are being impacted, according to your post, and your hearing is probably being attacked also, and that may be a long term problem for you and you just may not be aware of it yet.
Your choices are to wait or to get it treated. This is your choice and you will figure out what you will have to do. Listen to your doctors and read this forum front to back. Lots of anxiety...but I will tell you, this may be the most difficult part of this experience.
What ever you decide to do, this is not the end of the world. MOST of the people here, from what I observe, have a good out come from being treated. It is not a brutal experience. If you have two children, you have experienced more difficulty physically than you will from this. There is a recover period from the surgery and/or radiation treatment, but I'm sure you did not get in your bikini right after you had your kids and go to the beach. Recovery takes some time. Since you are young, that is a good jump on your recovery. It was not painful to me physically. Anxiety was my worst enemy. I would do this surgery again tomorrow, and not loose any sleep about it tonight. If you are going to be treated, get into shape and it will help you recover. Eat the right foods. Read this forum and you will see most people here have great out comes. It is rather unreasonable to believe anyone on this forum would tell you it is a walk in the park, its not, but it is highly unreasonable that anyone here would tell you this is the most difficult surgery there is. I's rather do this again than go to the dentist.
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You're better off speaking with your Doctor! ;)
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I just had to add that I was told it was a complex surgery but not the worst... But do alot of research and speak to several surgeons and I am sure you will make the right choice in making a decision as to surgery vs radiation .
Best Wishes,
Pat
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I guess I need to clarify my post. And say I'm sorry for not proof reading my post better. I failed.
The Doctor that told me it was the most difficult he could think of. (My AN was against my brainstem) He also said he has done over 200 of these ANs. And has only a 5% CSF leak rate. None of this I can prove. And I was not provided with any proof either. Mocho Doctor with cowboy boots and writes flow charts and diagrams on everything. Including my MRI film.
Thomas S. Ellis. M.D., F.A.C.S. P.A.
Fort Worth Brain & Spine Institute.
Neurological Surgery
As far as surgery being very ugly. This is a personal observation from my point of view only. And may reflect that I had a CSF leak that had to be fixed and I was put under the knife again within 7 days of my main 16 hour surgery.
I wish there was a place where everyones blogs are listed out. Because I got some of my best information from reading others ANers blogs. Surgery and radiation blogs.
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You're better off speaking with your Doctor! ;)
Yes, definitely talk to your doctor, but keep in mind that his experiences are based on his patient's experiences not his own - unless by some chance he's had AN surgery himself. He can tell you what his patients have been through, but all patients are different, and even though he's seen their struggles and their victories it's just not the same as having them himself. (No offense to the doctors out there).
I totally agree with James' post, AN surgery is not the end of the world.
I'm the same post op as I was pre op with the exception of being SSD (single-sided deaf) and wearing a BAHA (bone-anchored hearing aid) - and oh yeah, I appreciate life a whole lot more now ;D
I have to echo Kaybo's sentiments - a good attitude and a sense of humor will take you a long way on your AN Journey; and a long way in life for that matter.
Best,
Jan
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When I went and had my surgery done, the day I was getting my stitches out there was a family there at the doctors waiting to go in and see him...their daughter was 16, she was getting hers taken out in a day or two....I couldn't believe it...so young! So yeah, I guess this happens at all ages! I often wonder how she did, as I was on my way out as she was on her way in. Anyways, I didn't answer your question but please continue to rant!! :)
Jay
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Cola,
Late to this party, but I wanted to offer a little of my own insight. My AN was discovered somewhat by accident as well, due to headaches that did not react to medication. The MRI that flipped my life upside down. I was 27 at the time and my husband and I were beginning to plan a family, needless to say I just wanted that thing out of my head. I couldn't deal with the thought that it will grow and cause more issues, as I was tolerating the few symptoms I had. At the time I couldn't imagine trying to recover from a major operation with small children...
However, since surgery things haven't really gone as planned, mainly I'm having horrible headaches after 2 years post op. I'm confident that I will find relief its just been a long road. I just turned 30 and still no children, my thought process has somewhat come back to haunt me. I was of the mind to get the booger out, and then I'd be ready to go on and start a family, but it never occurred to me that I may have lingering problems that would keep me from becoming a Mom. Its tough, I'm not going to lie, but I will find my relief!
Hopefully you make your decision and are comfortable with it, you must go with your gut...thankfully because most AN's are slow growing you have time on your side.
Good luck with your decision and please know we are here to support you whatever you decide.
Liz
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K, so....after rereading...
I hope my comment above doesn't seem to negative, I was just trying to demonstrate how the AN has affected my life and as a young person with so much to experience it has greatly changed my life path. It has forced me to grow up, but in different ways than I expected. I am not unhappy, I just wanted to lend my experience and express that there are many factors to consider when deciding on a treatment plan.
Liz
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I was diagnosed at 34. My 2 kids were 3 years old and 6 weeks old at the time. My tumor was supposed to be 4.5 cm at diagnosis, but turned out to be much bigger when they took it out a few weeks later (recently found out that it was bigger than 5.25 cm, but nobody has ever told me exactly how large it was). It was pressing on my brain stem and about to completely close off some drainage thingy in my head, so they had to get it out asap.
I went to House Ear Institute in LA for my surgery with Dr Brackmann. That place was awesome and I loved Dr Brackmann.
Brain surgery is the hardest thing I've ever done, and I suspect it was made harder by my determination to keep breastfeeding my baby. Which was successful, I might add (I didn't wean until she was 18 months!!!!). ;-) The first 2 weeks were super tough. A month out, I was doing better but still definitely not back to myself, but by the 6 week mark I was feeling pretty good and was able to start riding horses again. 3 months post op, I was traveling the country jumping onto strange horses, shopping for a new barrel racing prospect. 6 months post-op, I felt completely back to normal.
The only complication I suffered was facial paralysis. My facial nerve had to be cut and grafted to get the whole tumor out, and so I was without movement on one side for 6 months. I have made a remarkable recovery on that front, nearly 2 years after surgery. I highly recommend accupuncture!! Honestly, going through facial paralysis was more challenging for me than the surgery itself. The emotional trauma is something that will stay with me, whereas recovering from surgery seems like a bad dream.
I had my first post-surgical MRI this fall and it was clean. Woohoo!
That's my story, hope it helps.
Vonda
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Lizard~
I don't think negative, just honest! I struggle with what to share because I didn't have the sunshine & roses outcome but IT CAN BE OVERCOME!! I'm sorry that you have not been able to start a family because of your headaches...I know that heartache. I had my girlies AFTER surgery but had 4 miscarriages before I finished my family! We should talk if you want. PM me your number if you are interested!
K ;D
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Nicole ~
I'm about 30+ years past being a young adult but I can empathize with your concerns, all the same. As Liz and others have pointed out, there is a risk no matter what you do; surgery, radiation or simply observe. Some surgery patients have a great outcome (Jim raises his hand) and some not-so-great. That's the risk inherent in AN (and almost any) surgery. There are simply no guarantees. Having a doctor that is very experienced with AN removals and shows compassion for your post-op quality of life is paramount. I had a doctor like that and I'll always believe it made the difference because he really cared about my post-op quality of life (and said so) not simply removing the tumor and on to the next patient.
Based on the size of your AN, I would suggest you consider observation ('Watch-and-Wait') and should growth become evident, go for the surgery, if that is your choice. Like others, I disagree that radiation is a threat because of your age. It is very precisely focused and shouldn't be a cancer risk but some doctors believe it is and advise against it. However, it's your body and how you choose to address your AN is a choice only you can make. If surgery is that choice, we support you in that and hope these posts (and the other forums) can help you make a decision.
By the way, ranting is allowed here. :)
Jim
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Cola: If your tumor is small enough and not needing immediate attention you have time to spend to find the right choice for yourself.
Spend your time reading all that you can, investigate the possible implications of each form of treatment that is of option to you as well as that of "waiting".
When my 1st was found I hadn't anytime to consider anything, surgery had to be done ASAP and that was that.
When my regrowth was found it was small and I had time to wait and watch whilst I considered my options, what was best for me and my family.
I was unable to deal with this thing growing ion my head and opted to have surgery again, I had it outwhile the thing was still small and so were my children, I figured it would be easier on me physically and psychologically I was very bothered by it, constant worry. I also felt to would be psychologically easier on the children if I had it done before they were old enough to fully understand what was goin' on. It turned out for the best for us.
I was offered gamma knife but I didn't want that route because I would still have to wait to know if was effective and I couldn't deal with the worry anymore.
Which ever your choice I believe you must be comfortable so once you're on the other side of treatment you not thinking "oh no.....I should have done this differently"
Kathleen
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Cola: If your tumor is small enough and not needing immediate attention you have time to spend to find the right choice for yourself.
Spend your time reading all that you can, investigate the possible implications of each form of treatment that is of option to you as well as that of "waiting".
When my 1st was found I hadn't anytime to consider anything, surgery had to be done ASAP and that was that.
When my regrowth was found it was small and I had time to wait and watch whilst I considered my options, what was best for me and my family.
I was unable to deal with this thing growing ion my head and opted to have surgery again, I had it outwhile the thing was still small and so were my children, I figured it would be easier on me physically and psychologically I was very bothered by it, constant worry. I also felt to would be psychologically easier on the children if I had it done before they were old enough to fully understand what was goin' on. It turned out for the best for us.
I was offered gamma knife but I didn't want that route because I would still have to wait to know if was effective and I couldn't deal with the worry anymore.
Which ever your choice I believe you must be comfortable so once you're on the other side of treatment you not thinking "oh no.....I should have done this differently"
Kathleen
Kathleen I just wanted to say you have gone through so much you are a strong woman and I wanted to ask you what size was yours the second time that you chose to go through surgery again ?
Best Wishes,
Pat
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Lizard -
somewhat off-topic here, but don't give up on your dream of a family. It took me almost 9 years of trying, hundreds of thousands of dollars in medical procedures, and 2 miscarriages to have my twins. All this was long before my AN was diagnosed, but my point here is keep the faith. I'm hopeful you'll find a doctor who can solve your headache issue and you can go on to live the life you want to live.
Prayers,
Jan
PS - Amen to your opinion, Donnalynn, I agree whole-heartedly.
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Talk about late to the party! Sheesh... story of my life! :D
Anyway, hello, welcome and all those good things. I don't have any words of wisdom that haven't already been shared here but thought I'd throw in my 2 cents in case you're interested. I had my surgery when the youngest of my children was 9 months old. I have no hearing in one ear and facial paralysis. I can honestly say that I've had dental cleanings that were worse than my surgery and recovery from my AN surgery. I had great doctors and nurses who kept any pain under control, no real setbacks, a great deal of motivation to get better (my family) and more importantly, a positive attitude about the whole thing. I've had many less than pleasant things to deal with in my not-so-young-anymore- adult life - but I choose to look for the silver lining. In the case of my AN, my silver lining was that at least it was me and not one of my children. And, of course, the great AN friends I've made along the way! ;D
As far as AN surgery being the worst there is - I am not a doctor, but I am a nurse who has worked in the OR - it's not even close.
Please don't be scared to death or think the worst will happen to you. Your doctors will guide you towards the right decision for you and you'll know when it's the right decision. Take a breather and enjoy your weekend and your family!
Lori
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PPSS* --* I just have to say ONE MORE thing.....
Us dear souls here on the forum are just patients who have some experience on AN's, the diagnosis, and treatment process, that we have gone through. Thus- NOT making us DOCTORS but people who truly care, and want to help others through this very difficult journey.
We NEED NOT have to state the disclaimer anylonger that " "we are not Dr's but"....lets NOT allow this one person to dictate our full hearted intentions here.
Donnalynn ~
Thanks for your input on this issue. I wholeheartedly agree with your charitable characterization of the people that post messages on these ANA forums but I also believe that making the disclaimer that we are not doctors, while certainly not necessary in every single post, is a prudent approach intended to make it clear, especially to 'newbies', that whatever we are advising/suggesting or offering an opinion on is based on our practical experience and that 'medical' questions, which we get regularly, need to be referred to an actual doctor and any advice we may offer is strictly as non-professionals. Using the now-hackneyed phrase "I'm not a doctor..." is not to appease anyone but to simply make a necessary statement of fact that warns the reader not to accept a suggestion/advice/opinion they read here as equal to that of a trained, licensed physician. It need only be used when making direct suggestions about treatment, etc, not in every post. I intend to continue using it when I deem it necessary for clarity and as a qualification that I trust will serve as a caution to the reader and in the process, protect the ANA from problems that could develop over a misunderstanding. However, that is my choice and has no bearing on what other forum posters choose to do in this regard. Thanks again for your genuine concern. You're a very valuable member of the ANA forums and your comments are always appreciated.
Jim
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Thanks Jan and Kaybo (you guys are the best :-* :-*)...I know deep down that I will have a family, but of course I get frustrated and its just been one of those weeks. My sister-in-law is due in a month or so with her second, and I guess I just get that "I want a baby" feeling when I'm around her. Damn that biological clock!
Thank God for my dogs :D
Liz
PS sorry to derail the thread...
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Pat: I never asked measurements with the original growth or the regrowth, I know the regrowth was growing about a mm per year and when removed was still confined to the auditory canal.....surgery fro regrowth was a short one, something like 4 hours......the original surgery was something like 15-16 hours.
The benefit of having the growth removed when I did was 1. less upsetting for my children who were too young to understand
2. a shorter surgery making recovery easier
3. during the 1st i had already lost 7 to 10th nerves so I had nothing more to loose
4, no more psychological stress of having it there!
People always see only that I was strong to get through all this.....I had the regrowth removed out of fear! To me having a second brain surgery was less scary then letting the thing continue to grow.....mainly because the original tumor was mis diagnosed for so long and not found until I was becoming critically ill!.
It came two to choosing between the two "evils"
But thanks anyway
Kathleen
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Pat: I never asked measurements with the original growth or the regrowth, I know the regrowth was growing about a mm per year and when removed was still confined to the auditory canal.....surgery fro regrowth was a short one, something like 4 hours......the original surgery was something like 15-16 hours.
The benefit of having the growth removed when I did was 1. less upsetting for my children who were too young to understand
2. a shorter surgery making recovery easier
3. during the 1st i had already lost 7 to 10th nerves so I had nothing more to loose
4, no more psychological stress of having it there!
People always see only that I was strong to get through all this.....I had the regrowth removed out of fear! To me having a second brain surgery was less scary then letting the thing continue to grow.....mainly because the original tumor was mis diagnosed for so long and not found until I was becoming critically ill!.
It came two to choosing between the two "evils"
But thanks anyway
Kathleen
Kathleen thank you for your response I had a 1 cm. removed July 2009 and now found out I still have 3mm left behind July 2010 so I am confused why so much was left and what to do with it ... At first I thought maybe CK now I am not sure like you said I rather have it totally gone and surgery will be shorter... I am having trouble with the titanium plate and screws so maybe just have it all taken care of... I sent my papers to HEI, I am not a flyer but I felt this time around maybe I just might go I could look into traveling by train...
So glad that you made the right choices in not having to worry about anymore regrowth.
Best Wishes,
Pat
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*raises hand*
I was 23 when my AN was found, also by accident while in the ER. My kids were 3 and almost 1 at the time. I had my surgery a month later, just a couple weeks after my 24 birthday. My situation was different in that my tumor was a different size and up on my brainstem, and the docs wanted it out relatively quick. In hindsight, though it probably wouldn't have changed anything, I wish I had more time to research before I went into surgery. Since you have the time, my only recommendation would be to read as much as you can and talk to a number of different docs to get their advice. Only you can ultimately be the one to make a decision, but there are a lot of us out there who can talk about our experiences if you think it will help you.
Feel free to check out my tumor blog - http://buginthebrain.blogspot.com (http://buginthebrain.blogspot.com), and PM me if you want with any questions. There are some things I don't talk about too much on the blog (since everyone I know in real life, including my manager at work, knows the address to it) but would be happy to discuss via PM or email (ex: my kids reactions to having mommy 'sick').
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Hi Cola,
It's a funny thing commenting on this post surgery, as my response and thoughts were much different prior to surgery.
Upon discovering mine, I just wanted it out. And fast. The faster, the better.
After having mine out, I have somewhat different thoughts on the matter. I would choose the exact same course of action for myself (based on the size of it), but for some reason I have different thoughts about *other* people and what they should do (odd, I know)-more specifically when it's a small one. I suspect I'm biased after hearing my neurosurgeon and his team speak at a conference 3 months after my surgery. I value his opinion greatly, and to sum it up he said that A) Unlike most other surgeries, with this one the patient nearly always comes out worse than they were before surgery ('worse' being a relative term. I guess technically I'm worse b/c I lost some of my hearing some other side effects, but having said that, I feel GREAT and much better for having it out of me!), and B) With the small AN's his preference is nearly always to wait and not rush to surgery or radiation. Since they are slow growing, he felt that a baseline should be established (ie: in a couple of months does yours show growth? If not-why not leave it and keep checking......maybe it won't? If it does, you can deal with the decision making at that point.....).
I thought I was young when I found out about mine (36). Since reading the board, I now know I'm 'middle aged' for this thing. LOL!
Good luck with your decision!
Adrienne
Deciding what to do is so personal. Will it make you nuts knowing it's in there and thinking about it all the time? Will the stress of it cause you additional health issues? Or can you calmly tell yourself that most of the time it's slow growing and you have time on your side?
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HI Everybody. Thank you so much for your posts it really does help me alot. I don't like the situation I'm in with knowing right now if I were to have it done it would be 100% covered by my insurance and I would still get paid for the 6 weeks I'm out. I'm afraid if I wait and something (knock on wood) happens I wont have this great insurance to cover surgery. But then again why have unncessary surgery? I have an appointment next month with the Mayo clinic and their AN Specialists so I will wait to see what they say. I've been having some crazy ringing of the left ear for a few months but the tumor is on the right so of course now I'm afraid I have another tumor on the other side...I think the stress is just starting to get to me. I want to have another MRI done, mostly for peace of mind but also to determine exactly where this tumor is and if it causes all of my symptoms. Thanks again!
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Hello everyone, its been quite a while hasn't it? So, had my 3rd MRI and all I was told by a "nurse" was "NO CHANGE". Not even the doc called to tell me. My dizziness and disequilibrium has just completely taken over my life. I refuse to drive unless necessary because I always feel like I'm "drunk driving". I seriously feel as though I'm a bobble head and even a couple of times I freaked out at work thinking we were having an earthquake or something because I could have sworn the ground was moving (when it wasn't). After discussing this with my husband I've decided to get a 2nd opinion with the Barrow Institute in Phoenix. It may be a while, but I want to at least talk to someone face to face who can hear about my balance issues and go from there. If they recommend surgery I may actually be up for that but if they say watch and wait then I know for sure I am supposed to watch and wait. I hate waiting though, I even called the docs office 4 times just to get my results (and that was less than 24 hours after having the MRI done lol)...hope everyone else is doing well :)
Cola
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Hi Cola .....
A couple of things come to mind that might be helpful.
1) I always keep my own copies of all MRI CDs and reports. You are entitled to both and should be able to obtain them by calling the imaging facility and making the request.
2) The same MRI can be interpreted quite differently by trained radiologists and/or other medical professionals, e.g. neuro-otologists or neurosurgeons
3) There are several places around the country who will give you a complimentary ("free") evaluation. House Ear Institute in LA, Stanford U in CA, UPMC in Pittsburgh, and others.
It is good that you are going for another opinion. The size of an AN is not the only factor in how much distress it can cause ..... location of it is equally important. You need some answers as to why you are experiencing the level of balance issues you are having. Try to eliminate caffeine and see if that helps ..... some people really react to it.
Hard as it may be, try to relax until you have some more opinions. Stress is known to make everything worse.
Many thoughts and prayers. Let us know how you are doing.
Clarice
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I'm glad this thread was bumped up, thanks Cola.
There have been some very interesting responses in here. Myself - I have an 8mm AN that is scheduled to be surgically removed (mid fossa) on July 21st. My only side effects thus far have been significant hearing loss in right ear with tinnitus, and some fatigue.
Honestly, the quality of my life hasn't been impacted too much at this point. It appears there's a significant chance that it will be impacted post-surgery. I've accepted that. What I'm reading more and more of is the long term effects. This scares me. Almost to the point where I'm reconsidering to a 'watch and wait' type of status, especially since I don't have what I consider life altering side effects.
But I'm completely torn. ??? I don't have any kids yet, but would like them to try in maybe a few years. I'd kind of like to have this taken care of by then.
I know nobody can tell me what to do, but I'm really trying to find validation either way.
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Hello and also remember that you miss many of those who do well and are gone from here after a time. Right now is the hardest time as one does not know what will happen and the worse fears are there. After, you know if there are any, and can adjust to dealing with them in time.
If there is some chance of a post op isssue due to tumor location ,then than issue will still be there later also and perhaps worse. But this has to be what you feel comfortable with and your own choice! Good luck with whatever it is! Cheryl R
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Well I'm going through with it, and am confident in my decision. There were some outside factors that encouraged me to go through this as well (major shakeup at work coming August 1st, want to make sure I'm covered!!).
I had my pre-op at UofI, and couldn't have been more pleased with the doctors, nurses...everyone involved. It was great to have my wife meet the staff too. July 21st is the day...I wish it was tomorrow as I just want to get this thing taken care of.
I've been trying to talk my wife in looking in the 'Caregivers' board. There's some great information in there.
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Itheus: I am glad for you that you've been able to make a decision and are confident in it. Once you're on "the other side" of the surgery and some time has past it's important to know you made the right decision for you. Let "us" know when the surgery is and how it goes
Kathleen
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Hello everyone,
my name is Hristina and I know a lot of people on the board (to the long-time participants actually). I am from Bulgaria and got three AN rectrosigmoid surgeries in a year - Oct 2007 - Oct 2008. The last one abroad - in Germany.
Cola, i am writing here in response to your questions. I would like to apologize first that they were posted 8 or so months ago and I have just had the opportunity to reply back. What happened with your questions and with the second opinion you asked for? Did you find the answer you were looking for?
At the time of the first surgery I was 25. It just happened out of the blue for me. I did not have any symptoms like loss of hearing. Just a sporadic vertigo that increased its frequency in a month or so. I had a big big tumor whose removing after the third surgery left me with facial paresis. More at that time rather than now but it is stil visible.
I was in your boat looking for the right place. I am from Bulgaria, Europe and was ready to fly over to HEI. Fortunately I found another top notch centre in Europe - INI Hannover, Germany where prof Samii operated me. Please ask for a second opinion, meet with doctors, write here and ask all questions you have. If I hadnt asked them I would find this place in Germany. Trust me, people here are wiling to help and ready to devote part of their time to inform as much as possible.
Please PM m if I can be of any help. I am sorry again I am not so often here!
All the best of luck
Hrissy
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Hi ColaBurns,
I am 26 years old and was diagnosed with a 2.2cm AN when I was 23 years old. I underwent Gamma Knife radiation in 2009 and recently was told that my AN is re-growing, I am scheduled for surgery to remove the tumor on Friday.
I have facial numbness, slight hearing loss, tinnitus, and have recently developed facial spasms. And of course, headaches. Not so sure when this all was posted, but I just saw it and wanted to let you know that there are other "young" people out here that have AN's
Good luck!