ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: edhayes on February 01, 2008, 09:42:15 pm
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I was just diagnosed with an acoustic neuroma after I had a MRI and IAC with gadolinium.
My chief complaints, which lead me to having an MRI was dizziness, headache and tinnitus.
The MRI showed “There is a extraaxial enhancing mass at the right CP angle extending into the right internal auditory canal. This is inseparable from the right 7th and 8th nerve complexes. It measures 1.3cm in width and 0.6cm in diameter. It’s appearance is consistent with that of an acoustic schwannoma although the differential also includes a meningioma.�
I work in a large teaching hospital and my gut feeling is that they prefer surgery over non-surgical approaches such as radiosurgery. I watched several videos of actual surgery and an excellent video from the University of Pittsburgh explaining the radiosurgery.
Radiosurgery seems like a great option, no invasive anything, much faster recovery and less post procedure side effects.
Anyone have any idea or thoughts.
Thanks so much
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Yes, it's frightening and anxiety-producing when you're first diagnosed. I'm glad you found this forum, which gives LOTS of two ESSENTIALS -- compassion and knowledge. I'm sure many others will 'chime' in with their support and feedback. The first thing is to find out as much as you can about your situation, which is best achieved I think by having a team that is experienced with acoustic neuromas look at your MRI pictures. I think I'm right that most teams expert with ANs are also expert in meningiomas, so they could give you the whole picture. I have been very pleased with the team I found at UWashington (Seattle) that includes a otolarynologist surgeon (ear and balance expert), a base skull neuro-microsurgeon, and a base skull radiation oncologist. If you can't find a TEAM that gives you all the options in an open forum/discussion, the next best would be to consult individually with one of each and get their opinions. The ANA organization is right is emphasize the importance of finding those with acoustic neuroma EXPERIENCE.
The size stated in the MRI report would imply that you DO have options - wait and watch, radiological procedures (Gamma Knife, or Cyberknife, ...) or microsurgery (for which they are also several decidedly different procedures).
So, after you know all the physical facts about your AN etc, then start reading here and elsewhere about the different choices and decide which fits best for you. We're all different, not just in the physical realities of our ANs, but in what feels right to us. At a get-together in November, another gal and I were comparing notes -- to her, it was really important to "get the thing out", whereas I knew from experience the difficulties of even successful microsurgeries on the brain, so I was happy to choose Gamma Knife.
There's lots of experience and knowledge on this board, but it can also be overwhelming to try to sort thru it, so please feel free to ask questions. Also, join ANA and get the brochures; they're very helpful in clarifying and outlining things.
Mainly, please know that you're not alone, there are many of us who have gone through what you're experiencing. It's a blessing that the internet brings us together.
Where are you located?
Take care,
Dana
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I am located in New York, Long Island to be specific.
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I had my suregry at NYU on January 10, 2007. If you wish to discuss feel free to contact me directly. I live in Princeton, NJ.
Joe-
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Thanks Joe
I will email you some questions.
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Hi Ed: I had retrosigmoid & am one of the few who ended up with right sided facial paralysis. I thank God it is an infrequent occurence, but it CAN & DOES occur.
I'm glad to see your looking at radiation.
Radiosurgery is a definite & smart option for you, given the size of your AN.
Wishing you all the best (from a New Hyde Park, Long Island girl), Nancy
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Nancy
Where and who did the surgery and how long ago?
Would you recommend them?
If you had to do it over again would you look into the CK or the GK?
I live in Setauket and work at Stony Brook. I know they do AN repair at Stony Brook but as far as I know only the surgical procedure.
That may be the best for me or anyone else but I want to explore my options.
Something about someone pooking around my brain frightens the hell out of me. (not that I could be more frightened at this point in time)
Take care.
Edmund
Hi Ed: I had retrosigmoid & am one of the few who ended up with right sided facial paralysis. I thank God it is an infrequent occurence, but it CAN & DOES occur.
I'm glad to see your looking at radiation.
Radiosurgery is a definite & smart option for you, given the size of your AN.
Wishing you all the best (from a New Hyde Park, Long Island girl), Nancy
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Edmund: I just returned you PM. I had my surgery at University of Miami/Jackson Medical Center 6/19/2006 (I'll never forget that date).
I've lived in South Florida since 1990.
I would recommend CK, just from what I've read about others who went that route.
You're in NY, a good place to be. I think Joe (jtd) can help you out as he posted earlier if you're interested in surgery.
Since I had a bad time with surgery, I don't think I could be objective about it.
Joe did very well with his surgery, I on the other hand, ended up with lots of complications....
Again, wishing you all the best, Nancy
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Hi Edmund - I was diagnosed less than 2 weeks ago (and am also a resident of Long Island). My AN is 1.8 cm. I didn't even know what that meant 2 weeks ago - but boy have I been researching this to death!!! I am grateful that interent exists to allow for this type of forum, and it's fortunate that we both found it during our search.
I have pretty much decided that surgery is the option for me. I don't discount the benefits of radiation, but I can't live my live knowing that htere's something in my head that doesn't belong there. I also don't really get a good sense of the long term effects of radiation... it seems like a newer treatment. It is also my understanding that if the radiation therapy is unsuccessful, a subsequent surgery may be significantly more complicated.
Trust me, I feel the same way about someone poking around in my head... but I feel like I just want this out of me. and I pray that I don't end up with serious complications.
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Yes, Mary is right... IF surgery is required after radiation, then it IS more difficult because the tumor becomes 'sticky' on the nerve.
But, the majority of the time the tumor is 'laid to rest' with radiation.
People take into account their age, lifestyle, 'psyche.'
Well, there are pros & cons to all options. You need to do what you're comfortable with.
I wish you both all the best whatever your decisions are. This isn't an easy situation to be in...... Nancy
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Well I will see the chairman of the neurosurgical department on Tuesday and see what he says. I work there so he is kind of doing this as a favor.
He is a great doctor but I just want to weigh all of the options.
If you go to http://www.acousticneuroma.neurosurgery.pitt.edu/index.html there is a great video that talks about gamma knife radiosurgery.
The doctor speaks about the "what happens if I need surgery after the GK" and he says it is not true that it is technically harder to do.
Hey you go to a Honda dealership and guess what, Honda's are the best, next door are the Madza's and guess what they say.
The GK guys all agree GK is the best and the same goes for CK and regular old surgery.
The only reason why I would like to opt for GK or CK is that the complication rates are much lower and time back to normal life is almost instant whereas surgery it could take 2 - 3 months before you are back to normal.
Have you found anyone on LI or are you going to head into the city?
Maybe we can get a group discount thing going..... (kidding)
I will keep you updated.
Hi Edmund - I was diagnosed less than 2 weeks ago (and am also a resident of Long Island). My AN is 1.8 cm. I didn't even know what that meant 2 weeks ago - but boy have I been researching this to death!!! I am grateful that interent exists to allow for this type of forum, and it's fortunate that we both found it during our search.
I have pretty much decided that surgery is the option for me. I don't discount the benefits of radiation, but I can't live my live knowing that htere's something in my head that doesn't belong there. I also don't really get a good sense of the long term effects of radiation... it seems like a newer treatment. It is also my understanding that if the radiation therapy is unsuccessful, a subsequent surgery may be significantly more complicated.
Trust me, I feel the same way about someone poking around in my head... but I feel like I just want this out of me. and I pray that I don't end up with serious complications.
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Hello Edmund,
Sorry about your AN. I had never even heard of them a month ago....
With regard to the GK, I keep coming up against the risks of radiation therapy with long term side effects and that here in the UK there are tending to raise the recommended age limit because of this (can I ask which 'decade' you belong to?!).
Anyway I will be really interested to read what you find out about some unbiased pros and cons of treatments. What size is your AN ? (if you don't mind me asking!)
Thanks, take care and good luck!
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I didn't hear anything about CK and age restrictions.
My AN is presently 1.3 x 0.6cm
Edmund
Hello Edmund,
Sorry about your AN. I had never even heard of them a month ago....
With regard to the GK, I keep coming up against the risks of radiation therapy with long term side effects and that here in the UK there are tending to raise the recommended age limit because of this (can I ask which 'decade' you belong to?!).
Anyway I will be really interested to read what you find out about some unbiased pros and cons of treatments. What size is your AN ? (if you don't mind me asking!)
Thanks, take care and good luck!
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Edmund -
welcome. I can certainly understand your feelings upon being diagnosed. Most of us were thrown for a loop upon hearing that we had an AN - and most of us had no idea what an AN was. ;D
I don't want to tell you which option to choose - radiation vs surgery - as that is your own personal choice and should be something you decide. Radiation is right for some, surgery is right for others. However, I do want to chime in and say that if you have surgery, it doesn't necessarily take 2 to 3 months to return to "normal". The usual time frame for recovery post op is 6 weeks. I had retrosigmoid surgery on 5/31/07 and was back to work part-time 2 1/2 weeks post op. Granted, I work a desk job and I didn't have any major side effects, but there are lots of others who had similar experiences - just read some of the posts on this forum. The main thing to keep in mind is that everyone's recovery is different - whether they choose radiation or surgery. I also have never heard anything that supports your claim that complication rates are lower for GK or CK vs surgery. You might want to ask the neurosurgeon about that when you meet with him on Tuesday.
Choosing your treatment option is a hard decision, but once you educate yourself about each choice it will become easier to make a decision. Make sure you ask a lot of questions and that your doctor has a lot of experience in whichever path you choose to take. Whatever choice you make, you have the full support of the members of this forum.
Good luck with your appointment; please keep us posted,
Jan
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Hi Edmund,
I think I'll do some ranting today on a couple of persistent issues regarding radiation treatment. First though, let me post a link to the cyberknife support group. In addition to the Pittsburgh link you obviously already have, it is another important radiation link. There is a message board for posting questions that are usually answered by doctors currently practicing cyberknife, and you can also contact some of the doctors by email. It would definitely be worth a visit: http://www.cyberknifesupport.org/
Rant #1: While people seem to understand that consulting a surgeon about possible surgery makes sense, they seem to forget that consulting a radiation oncologist about radiation also makes sense. Neurosurgeons do not generally have radiation training; they don't practice radiation treatment; they can't possibly keep up with all the literature on radiation treatment, and they are not expected to, either - they are surgeons, not oncologists. Many of them simply refer back to the NIH Consensus Report on AN Treatment, published over 15 years ago in 1991 (e.g. it is still cited on the House Ear Clinic web site). That report pre-dates the 1997 clinical results from U. of Pittsburgh in 1997, and the last 10 years of cyberknife clinical results from Stanford.
So talk to a radiation oncologist about radiation, and talk to a neurosurgeon about surgery. If you are lucky, you may find an ENT or neurotologist who "brokers" treatment, and is fairly current on developments in both areas. Dr. Chang at Stanford is the rare exception, a neurosurgeon who performs surgery every week, and also practices CK every week, and publishes papers on CK. Of course he works with several radiation oncologists on the CK side, including Dr. Gibbs and others.
Rant #2: If any treated AN regrows, it will be more difficult to treat the second time, regardless of initial treatment. You can quibble about the relative regrowth rates of different radiation treatments and different surgical approaches, but overall, the chance of regrowth is basically the same for radiation and surgery. In both cases, if the tumor regrows, it will now be tangled up with scar tissue as well as nerves, and be more difficult to treat. The notion that regrowth after surgery is somehow cleaner than regrowth after radiation is not borne out in the real world - surgery also creates sticky scar tissue. The illogical comparison sometimes made between initial surgery versus surgery on regrowth after radiation, is an apples and oranges comparison of little value. Besides, some surgeons have stated that the additional stickiness is not a big problem anyway.
Rant #3: Radiation might cause cancer - if you were exposed to full body radiation when the atomic bomb went off over Hiroshima. There is scant evidence that it ever happens as a result of radio-surgery, that is radiation focused on a specific target. If you must list this as a possible danger for AN radiation, then you must also point out that more people die from AN surgery than get cancer from AN radiation treatment (by both count and percentage). Fortunately, neither event occurs often enough to be relevant, it is part of the general background of risk in all medical procedures.
Okay, I feel better now. :)
Steve
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Unfortunately even when the percentages are low as a total, they are 100% for the person "lucky" enough to be dealt the bad hand. So when Steve "rants" that the percentages are low for death during surgery he is correct....but for those few people it's 100%....the same holds true for radiation and cancer...when it happens to you it's 100%.
Educate, educate, educate yourself and once a decision is made regarding treatment have the faith that the decision made is the best for you and your family.
Joe-
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Thanks so much Steve.
You are 100% right.
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I am so hating having this thing. The havoc it has already caused to my day to day life and the headache it causes when trying to work out how best to deal with it!
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edhayes (?) i loved the car dealership comparison...and very much identify with marymom BUT have been reading this long enough now to know how complicated the whole thing is....i guess this site was born in the very womb of indecision that this growth thrusts us( back?) into ...
to "Newly diagnosed – frightened, depressed and anxious"...you probably have way more time than you think you do for a decision....this site has turned decision time into a whole continent...enjoy your plunge / opportunity to learn
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Reminder to discuss with docs the current size and location of your AN ... BECAUSE you also want to know if one of your options is 'wait and watch' (that is, get periodic MRIs). Because almost all ANs are very slow growing, 'wait and watch' gives you time to come to the decision that you feel good about. Of course, I'm assuming here that your symptoms aren't overwhelming -- that is, some people have very bad balance problems, or headaches that sort of 'demand' they do something immediately.
I guess I have to add my two cents about radiation vs microsurgery. Please note I am biased toward radiation. But, despite my bias, I think it's fair to say that radiation is less invasive, and the body generally reacts less. I know some people have unforeseen negative consequences from radiation therapy (you can search this Board for some stories), but in general the radiation simply targets the tumor, whereas microsurgery involves many surrounding parts as well. Fellow board members such as Steve have researched the actual research, but as someone said, if you're the rare one that has the aberrant consequence, research becomes meaningless. On the other hand, it's the best factual input we have to help in our decision-making.
I'm really for including ALL the factors -- your particular medical AN situation, what's important to you, the 'facts' as we best know them, AND your gut feelings. Try using a decision T-chart to outline the positives and negatives of each option for you. In general I think it's fair to say that each of us "knows" when we've settled on the plan of action for us, even though the intervening decision-making time can be nerve-wracking.
I guess I'm rambling on because I really do want to tell you my honest perspective, acknowledging at the same time that each of us is different. My AN was/is 1.6 cm. I fairly quickly decided to do GammaKnife, based on: 1) The medical fact that this is a size that's treatable with radiation, whereas as it gets larger and larger, microsurgery is required. 2) I've had quite a bit of family experience with brain surgeries. On the one hand, my mother had one major brain surgery to clip burst aneurysms and then several more minor ones to get a shunt in place. These saved her life, although she was brain-damaged throughout the rest of her life. On the other hand, my first husband had another kind of benign brain tumor that intruded on the medula. He was an older man, 74, but very vibrant and healthy otherwise. He lived through the surgery, but (in my opinion) the glare of ICU lights, being awoken at all hours, etc. etc. wore him down and he died two months later. (BTW, the whole issue of lights, awakening at night, etc etc is starting to be studied as bad for health...... DUH, as I say!!). This is a long way to say that I KNEW I wasn't doing to have microsurgery unless my life depended on it. My whole gut was saying "no surgery", but I trust you can see why I had that prejudice.
Don't get me wrong, I trust base skull microsurgeons; it's just not for me. My local doctor sent me to the team at Univ of Wash in Seattle. I was satisfied with their team approach - I met with all three of them at once, they respect one another, etc etc. There are other teams in the Seattle area that are highly respected, but I felt good about this team, so I stayed with them. They use Gamma Knife, and, although I researched the other radiation options a little, I was satisfied to choose Gamma Knife. The microsurgeon is actually the one who placed the head rack the day of my treatment; I had 'la-la' drugs so the whole thing was no more painful or uncomfortable than having a tooth filled. I was a bundle of energy for the three days afterwards when I was on steroids! I had fatigue and slight headaches during the next month or so. My symptoms are about the same now as before (some hearing loss right ear, some tinnitus, some balance problems). Anyway I'm satisfied. Of course, we have yet to see if radiation kills the tumor, but I can live with that uncertainty.
Well, like Steve said, I feel better. I know I go on and on, but I thought it might help to hear one story. Find others here, and continue soul searching. Be grateful that it's not a life-threatening prognosis, take lots of deep breaths, and keep reading !! Do try to find others in your NY area from whom you can get opinions of local teams.
Dana
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Hi Ed,
Well, just wanted to say hi.... as you can see, everyone is awesome at offering experiences and thoughts/inputs. Great suggestions made by all... and take it easy on the info overload. It all can be overwhelming some times, so hang tough.
So, anyway.... you know how to find me..... hang in there... and as you can see, what a wonderful bunch of new "friends" you have here. :)
Hang tough!!!!!
Phyl
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Tomorrow is my 1 week anniversary of my diagnosis.
I will say that without question everyone on this message board has helped me immensely. While I am still somewhat frightened and anxious, I now have a road map and a plan, thanks to all of you.
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Ed -
I'm glad you're finding some "relief" here - that's what this forum is all about ;D
We may all have different opinions about treatment options, physicians, etc., but in the end we're all here to help and support each other.
I'm glad you made it through your first week - diagnosis can be overwhelming.
Jan
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ed, its the 1 wk anniversary of your new journey in life :) But, know that we are all here for you during this journey.... hang tough! :)
Phyl
Tomorrow is my 1 week anniversary of my diagnosis.
I will say that without question everyone on this message board has helped me immensely. While I am still somewhat frightened and anxious, I now have a road map and a plan, thanks to all of you.
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Ed,
Sorry for the late reply. I live in NJ and unfortunately, my AN had to be treated last year again, for the second time. You are lucky that your AN is still small. I understand how scared and anxious you are but in the end you will be OK and that is what matters. I visited quite a few doctors in NY and there are so many who have done hundreds of AN surgeries (micro and radio) so that means for anybody who has a small AN and goes in the first time (YOU!), they are very qualified. If you are leaning towards radiation, I have only investigated GK in NY. CK is available somewhere else but not in NY to my knowledge. There are two doctors who do GK I would recommend you speak to:
Dr. Golfinos of NYU (a neurosurgeon who does both micro and radio) and
Dr. Isaacson of Columbia Presbyterian (he does only GK and works with Dr. Sisti, a neurosurgeon).
The GK installation at Columbia Presbyterian is the oldest one in NY but you should really make an appointment with both of them and ask a lot of questions. Please, read all you can on radisurgery forum here to educate yourself. Keep us posted!
Eve
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Columbia and NYU are 2 of the places that I plan on talking to.
NYU has a GREAT reputation.
There is a guy there named Kelly (he could have retired by now) that is an icon in the neurosurgical world.
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Hi edhayes..... have you visited the cyberknife site? There is a wealth of info and some great docs who know docs personally as well that could help steer you to a good ck consult. Personally biased to ck, smallish tumor myself, however did consider the surgery to just get it out! .......... In the end I am pleased so far with my decision.
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I am also looking at CK.
It seems like a good plan.
Within a few weeks I will have all the facts.
The last guy I spoke to at UVA told me to do nothing for 6 months except - make a plan, decide on a therapy and than do it.
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Hi Ed,
I must say, for two weeks in, you are moving along through the process quite nicely. It took me that long just to find this forum. :) It sounds like you are onto some good doctors to talk to. I like the advice of that last guy: make a plan, decide on a therapy, and then do it. You can gather and digest only so much information; then you just have to decide and set sail.
Steve
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Hi Ed
Not much I can add to the rest of the group. I understand the frightened, depressed, anxious -- and I'll add a bit angry to that. When the ENT pointed out my tumor it hit me with a thud. I opted for surgery after discussing the options with the House Clinic surgeons. As you will see on this board, everyone's experience differs. In my case, the surgery was a piece of cake and the hospital recovery was a breeze. But that was just the start. Know the full scope of what you're getting into and the associated risks with each option. I can't remember who said it above -- but my decision for surgery was based on the idea that I wanted to get rid of the thing too. At almost 60 and knowing there would be other medical issues to deal with in the future, I didn't want to have to deal with one more.
Best wishes.
David
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I have spoken to many people that said the surgery was a cake walk.
I am just very frightened of it.
It's a personal thing I guess.
Can I ask how long it took before you were back on your feet and doing your normal day to day activities?
Did you have any complications, ie hearing, face , anything?
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Hi Ed.
I wouldn't exactly call it a cake walk - depending on what kind of cake you're used to, I guess! It is major surgery - but I can tell you, it wasn't nearly as bad as I had imagined brain surgery to be! I didn't have any pain afterwards and am able to deal with the other inconveniences pretty well.
I have right side deafness and some slowly resolving facial paralysis. I've had surgery to minimize the damage to my eye that won't close and to make it more comfortable and surgery to put in a BAHA implant. These things have made my day to day life a little different, but after a year (next Wednesday) of dealing with them, I kinda just have become used to it now. I realize there are people out there suffering a lot more than I am, so I just do what I need to do.
As far as returning to regular activities, everyone is different, so it's hard to say. I basically took 2 weeks "off" - I'm a stay at home Mom, so it's not like I get days off - but after 2 weeks when my husband went back to work and all our help left, I was able to care for my little ones (ages 4 and 9 months at the time), do laundry, cook, clean...the usual routine. About the only thing I wasn't doing at that point was driving - I waited until about 8 weeks after surgery to do that.
It's normal to feel frightened. I get that way when I go to the dentist for a cleaning, so heck - you can imagine how I felt before my surgery! I think you'd have to be crazy to not be a little on edge over surgery - of any kind. Just know that we've all been there and we made it through!
Good luck and hopefully you've gotten lots of good input here. I know I have!
Lori
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"Abducted by Aliens - They Probed My Brain!" reads the headline. "My choice was breath some gas while they cut something out of my head, or have my head clamped to a table while they zapped me with a giant machine!"
It is weird to be confronted with this situation, and reasonable to be frightened of it. Your best consolation is that many have gone before you, and in most cases it works out well enough in the end. CK or GK is probably easier to do than surgery, but either way there is a journey to go through after treatment. As Lori said, you just get used to the "new normal" in your life, whatever that winds up being.
Take it easy for a bit, you don't have to wrap this up right away. If you let your mind mull it over, you will work out what you are going to do and get comfortable with the idea.
Best wishes, Steve
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I have spoken to many people that said the surgery was a cake walk.
Ed, I'd personally like to know who said that....... *raises single eyebrow*
Phyl
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thats it ... Aliens caused the AN ... LOL ....
of course everyone is a little differnent when it comes to surgery .. but as a guideline .. the bigger the AN .... (and the longer the surgery) the more chance for issues... and this could be said for ANY surgery !! ... just by going under.. if they kept you every for a few hours and did nothing else... you body would still take a few weeks to get back to normal ...
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I personally wouldn't call the surgery a 'piece of cake' - my cholecystectomy was a piece of cake, my bilateral ulna nerve decompression & transposition
was a piece of cake, gold weight implant into upper eyelid, & then removal was a piece of cake; this AN surgery was a nightmare!!!! (Glad I'm doing so much better now, only since the TTT surgery! - not a piece of cake either)...
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Ed -
calling the surgery a cake walk is a little too optimistic in my opinion. Despite my lack of lingering side-effects, SSD being the only one I'm left with (thank God), I would never describe the surgery as a cake walk. Don't let yourself be frightened, but don't kid yourself either; you need to realize it IS major surgery. Is it the end of the world? Definitely no. Am I sorry I did it? Again, definitely no. It was the right choice for me. And today a lot what I went through is at the back of my mind - not the front; a lot of the unpleasant memories have faded.
But that said, I woke up post op feeling like I had been run over by a very large truck - the room was spinning; I had double vision for 3 or 4 days; severe nausea for 5 days; balance issues for weeks; no taste buds, metallic mouth, dry mouth, and dry eye for months. It also took me months to get past the fatigued feeling.
But the good news, I got through it and every day I got better and better. I was back to work part-time in 2 1/2 weeks and back to full time in 4 weeks. I'm not trying to scare you, or anyone else, but don't take surgery lightly - it will be tough at times. But, you WILL get through it.
Jan
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So I'm the "piece of cake" guilty party. Compared to what I conjured it up to be, it was. But I would like to point out that my surgery only lasted 4 hours -- I had a relatively small tumor -- and there were no serious complications. There was no pain with the actual surgery -- headaches later. And I'm putting it in comparison to two other very painful abdominal surgeries I had.
Ed -- as far as the after-affects -- my surgery was 12/3/07 -- I still have facial palsy because the facial muscle nerve was stretched and some balance issues. I see improvement in the balance -- I just went for a walk/run -- my head still feels mushy but as long as I keep my feet close to the sidewalk, I don't lose my balance. My biggest issue is my eye. I can go without a full smile, I can deal with eating, I put up with a loss of taste, but the eye care is difficult. You might want to read the posts under post-operative -- eye issues. It's now been over two months for me and I haven't been able to return to work -- but I'm an actor and I need my smile back before I can work.
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David - I was just the opposite - I didn't think much about the surgery, didn't plan anything, etc, & for me it was the WORST.
Guess everyone's got a different perspective.
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David~
Since yours was a piece of cake -- I get the corner with LOTS of icing!!!!!!!
Mine was NOT, but it probably had something to do with being on the operating table for 14 hours and having a stroke while there!! :o) I was like Nancy, I really did plan for anything, but I really didn't have time. Plus, as I have said many times before...I was young, naive & BLOND...what can I say?
All that said, it doesn't matter how bad it is at the time...you CAN and WILL recover -- I have an incredible life now!!! Is it a bit different than others?...do I look dfferent? YEAH, but still wonderful!!
K
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David, you didn't have to publically note that... but appreciate what you have shared about it..... so thank you. :) Not a witch hunt, so don't take it the wrong way, ok? :) I'm glad that your procedure was short in the OR and we know HEI does great work.... even with what you endure now, I have a feeling that the smile certainly comes from within and my hope is that it branches back outwards :) Hang tough!
Agree with all that AN surgeries can come with complications... some outcomes are good, some not so good... and "individual results may vary". I commend Ed for researching all that he is and continues to do to find what will work best for him. He's heard some about radio-treatments and learning about the microsurgical, thanks to you all that are courageous enough to share.... and continue to send wishes for wellness... to you all.
Phyl
(btw, I like the icing as well!) :)
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Ah, David, you're probably just used to playing a tough guy! :D
And if there's cake - I want some too! Before anyone walks through it! ;D
Lori
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Hey Lori
Me play tough guy???? LOL! I ususally play compassionate ministers or doctors. Maybe I need to rethink my post-recovery.
And Phyl -- my pre-idea of the surgery was some Frankenstein thing -- lightening, thunder, Igor, bolts on the head. My imagination tends to get carried away. As far as I could tell, it wasn't like that -- at least not while I was awake. No telling what went on when I was under. Hmmm, come to think of it, I do have this unusual fear of fire.
David
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As a nurse who's worked in the OR - trust me when i tell you - you don't want to know what goes on in there when you're asleep! :D Nothing horrible, but you do have to entertain yourselves after being stuck with the same people in a small room for 8 hours straight!
You don't get the bolts in your head until you go for a BAHA!
Lori
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David -
minister or doctor roles? Just think, if any parts come up for a doctor who needs to perform AN surgery, you're a shoo-in. Now that you're an experienced postie, you have a leg up on the competition - who probably won't even know what an AN is ;D
Jan
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Surgery was indeed NOT a cakewalk for me, and I went to one of the best places in the country--House Ear Clinic. 10 days post op I had my first suicide migraine. At 6 months post-op I was having them every day and this continued for almost 2 1/2 years. Thousands of $ in medical bills later, I'm fighting with the gov't for disability because I still have headache issues and can't work most of the time due to exertion headaches, still get the suicide headaches about 2-3 times a month, take about 6 different meds, and my life plans have been severely altered.
However, you can't prevent what you can't predict. I had top notch surgeons and great mediacal care. Just bad luck. I was a very active and healthy 50 year old pre-surgery--an avid hiker, runner, and sailor. Today I can't run 2 steps without my head feeling like it's going to explode. I don't mean to scare anyone out of surgery, I'm just explaining my reality.
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate2.gif)
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Has anyone used Georg Noren, MD, PhD in Rhode Island Hospital?
I was thinking about going there for a consultation.
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Hi Edhayes!
What does it mean that "the differential also includes mengi..."?
I ask because I also an AN that is not located in the IAC but has grown to extend there.
I was sent for MRI to "rule out an AN" (well i didnt i surprise them!). Now diagnosed with an AN... is there a chance it could be a mengi? I thought that this was tumor "in" the brain.
Sorry, i am new to all this!
I was also interested that you had info about the AN being tangled with certain nerves. I didnt get this kind of detail. Is this something that they can tell from MRI? I assume this would be good to know as would make it easier for the experts to predict how difficult treatment might be and better predict complications.
thoughts?
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Calimama -
I'm not sure what the answer is to the first half of your question; hopefully someone else will.
As far as nerves go, generally your MRI report will indicate the location of your AN. For example, in my case, my MRI report said my AN was in my IAC and it was pressing on the 7th and 8th cranial nerves. The report did not mention whether the nerves were tangled or not, but post op I was told that my AN had wrapped itself around my hearing nerve.
I'm not sure if it was wrapped around the hearing nerve at the time of my MRI and no one thought to mention it, or if it wasn't evident to anyone that it was wrapped around the hearing nerve until they opened my head for my surgery. It could have been either way since my AN grew very rapidly between my MRI and my surgery.
Jan
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Jan...
Thanks for the explanation. I wish i knew more about what the implications are based on my AN (size and location). I guess this will come when i meet with the surgeon and radioguys, but i will keep digging in the meantime.
cheers!
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I was just diagnosed with an acoustic neuroma after I had a MRI and IAC with gadolinium.
My chief complaints, which lead me to having an MRI was dizziness, headache and tinnitus.
The MRI showed “There is a extraaxial enhancing mass at the right CP angle extending into the right internal auditory canal. This is inseparable from the right 7th and 8th nerve complexes. It measures 1.3cm in width and 0.6cm in diameter. It’s appearance is consistent with that of an acoustic schwannoma although the differential also includes a meningioma.�
I work in a large teaching hospital and my gut feeling is that they prefer surgery over non-surgical approaches such as radiosurgery. I watched several videos of actual surgery and an excellent video from the University of Pittsburgh explaining the radiosurgery.
Radiosurgery seems like a great option, no invasive anything, much faster recovery and less post procedure side effects.
Anyone have any idea or thoughts.
Thanks so much
Hi, guys
Today i was diagnozed with aucostic schwannoma. i am scared, very scared. Please someone talk to me
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Hi Irina~
So sorry that you have been diagnosed with an Acoustic Neuroma (AN), but I think you will find a LOT of support here. It is all very overwhelming at first, but just take a few deep breaths and we will get through this TOGETHER. I would love to chat with you, if you would like -- you can PM (icon on left) and give me your number - if you are in the US, I have unlimited long distance. I can talk right now if you need to. I had surgery 12 years ago and I have a great life now!! Life doesn't stop with an AN!!
K
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Irina -
first of all, it's very normal to be scared when you are diagnosed with an acoustic neuroma; we know exactly what you are going through. No one really thinks that they will have a tumor growing inside their inner ear canal - I know I certainly never expected something like that. I don't know how your AN was discovered, but if you were like me you probably just thought you had wax in your ear, that your doctor would remove it, and life would be back to normal. But my doctor saw nothing when he looked into my ear, so he sent me for an MRI that showed I had a tumor. Quite shocking :o
One of the good things about acoustic neuromas is that they are very rarely cancerous. Another good thing is that they typically grow very slowly, which gives patients time to decide on a treatment option. Depending on the size of our AN, you may have the option of watching & waiting, surgery, and/or radiation.
If you haven't already, I'd like to suggest you contact the ANA and ask them to send you some of their literature. It's very helpful in explaining what an acoustic neuroma is, what the treatment options are, and the side-effects of each treatment. The ANA also stresses that you need to find someone who has experience in treating acoustic neuromas and I couldn't agree more. On the first page of this website, there is a list of medical resources that might be helpful to you.
In addition, as K said, you can rely on the members of this forum to answer questions you may have and to support you in your AN journey.
It would help us to help you if you tell us the size of your AN and where you are located. There are AN patients from all over on this forum - USA, UK, Australia, Canada, Germany, etc - and someone should be able to suggest a doctor in your area if that is something you are interested in.
Jan
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It would help us to help you if you tell us the size of your AN and where you are located. There are AN patients from all over on this forum - USA, UK, Australia, Canada, Germany, etc - and someone should be able to suggest a doctor in your area if that is something you are interested in.
Hi Irina,
Welcome. Pls share with us what the docs have told you so we can be of help. I know that with the initial diagnosis, things can be overwhelming, but we are here to help.
What size is the AN? Where is it located? Where are you located?
Here to help.
Phyl
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Hi, guys
Today i was diagnozed with aucostic schwannoma. i am scared, very scared. Please someone talk to me
Irina,
It is good you found this site. A diagnosis of an acoustic tumor is scary at first. You will find that it is a very treatable condition.
Where do you live?
Kate
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Hello, everyone and thank you!!!
15mmx16mmx24mm in the left ear
I am in NY.
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Hi Irina,
I am fairly newly, too. I was diagnosed March 24th. When I read it is considered a brain tumor, it scared me more. However, after the initial shock I soon felt a lot less firghtened and I am very optimistic about my future. I think you will feel the same way.
I am having the Cyberknife treatment June 2, 3 and 4th. I did a LOT of research to get to this point. My doctor said I needed to understand all my options. He really wanted me to understand this and was very glad I found this site. My doctor also is a specialist who has done many, many ANs. He does the 3 microsurgery treatment plans as well as the Gamma Knife and CyberKnife. He also talked to me at some length about the watch and wait approach. I would recommend you find a doctor who specializes in ANs AND does various treatment types. That way you can feel you have really looked at all options with a person that really understands each one and the pros and cons associated with each. Of course, no 2 ANs are identical, nor are the patients. Therefore, the treatment you and your physicians choose for you may differ from someone elses. We will support you whatever you decide.
Hang in there! If you need to talk, you can PM me.
Take care,
Mary
.The people on this site are fantastic!!!!!!!! They have already become my family. I live in AZ so I can't help you with Dr.s nearby
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Irina,
Is NYC close to you? NY can be a big place. If NYC is close, there are many surgeons and radiation specialists who have many years of experience of treating AN. Search and check for recommendations on this site. Best of luck in your search.
Eve
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I am so glad you found this site. I was diagnosed in March, myself....and remember how scared I was....
There are quite a few options you have......and I don't think that helps much at first....until you read up on all of them.
The key is finding the right doctor, who has done ALOT of surgeries, and also doctors that are very experienced in all the other options.
Like someone said, take a deep breath, slow down, and start reading. At least they are not maligant. It could be worse.....whether you believe that or not, right now.
This is a great group, and someone is ALWAYS here for you.
They are the best at offering support, and prayer if you want it.
We will be here with you from the start for as long as you want.
Please take care, and don't assume the worst. Get knowledgeable answers.
You will be fine, whichever way you decide to go.
Lacey
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Hi Irina,
So glad you found this site, though of course I'm very sorry you had a need for it. As you can see, there are many people here at various stages of their AN journey to share resources and stories and offer support.
As frightening and overwhelming as the diagnosis is at first, the definite upside is that ANs are typically benign and very very slow growing, so you have time to gather lots of information and really research your options. I was diagnosed myself in late February, and though my initial reaction was one of disbelief and distress, through consultations with doctors and this wonderful forum, am feeling more and more "ready" to confront this challenge (my surgery is scheduled for June 2).
Good luck and keep us posted--we'll be here!
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Hi Irina-
I see you are in NY - if you are anywhere near NYC, I can personally recommend Drs. Golfinos and Roland at NYU. They just removed my AN about 11 days ago. If you want more information, about them or me, feel free to PM me. Try not to get overwhelmed - it is indeed scary to have anything growing near your brain.
I found this sight to be of immeasurable help and support to me when I was diagnosed a couple of months ago - take full advantage of it as you need.
Let us know what else you need, okay? And, let me know if you want more info on the NYU docs. BTW, there are also several other top surgical teams in NYC who treat ANs - you will be in excellent hands.
Debbi (11 days post op and back behind the wheel of a car)
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have anyone heard about doctors M.Sisti and Steven Isaacson at Columbia University?
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Hi Irina,
Yes, I visited them both and liked them very much. They recommend GK first if your tumor is 10 cubic millimiters or less. They are absolutely worth visiting even if all you do is learn about your tumor and GK. I got an enormous amount of information from them. Also, keep in mind that Dr. Isaakson is one of the first people to work with the GK machine, has 10-year data coming out from Columbia. They are the oldest installation of GK in NYC.
The reason I did not go with them does not apply to you: I had a regrowth and ruled out radiation because my tumor was on the brainstem. Dr. Sisti next advised a very conservative surgery whereas he would not take all of the tumor out but leave quite a bit on a facial nerve. I took a chance with another surgeon, my facial nerve has been saved, no tumor seen on MRI and I am almost completely recovered (yay!!!). I am also pain free (this is heaven!!!).
One great thing I like about Dr. Sisti is that he listens to patients' concerns. My concern were headaches because I got them after the first surgery. Dr. Sisti does cranioplasty (closes the incision differently than most surgeons) and avoids headaches. Definitely ask him about it. He is also very experienced in ANs, he has done hundreds of them. In short, I would recommmend them to any newbie. Best wishes no matter what you decide. Good luck!
Eve
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Correction here: it is 10 cubic centimeters, not millimeters. Sorry!!!
Eve
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Hi Eve and thanks! I had to ask my Brit Bloke to do the cubic cm metric conversion for me... so that would be approx 2.15cm x 2.15cm or smaller for GK? I've heard up to 3cm or less (usually all microsurgery done if larger than 3cm, based also on location of the AN).
Thanks for sharing this! I've now learned metric as well (bloke has been trying to get me to learn it!)
Phyl
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Phyl,
Cubic measurements are THREE multiplied by one another. So, it is 2.15x2.15x????. There should be three of them. It is not a perfect measurement of a tumor volume but it gives a good approximation. I bet they have software that measures the tumor's volume exactly. So, Irina's tumor measures 2.4x1.6x1.5 =5.76 cubic cm, well under 10. Mine was bigger but weirdly shaped.
Also, I should add that Dr.Sisti considers GK a failure if the tumor starts growing after 2 years. I did not ask how they distinguish between swelling and growth. Yes, radiation specialists usually talk about the tumor in cubic centimeters while neurosurgens are mostly concerned how much work they have to do to separate the tumor from the cranial nerves. So, 1.6 cm is less for them than 2.0 in any direction, for example. That has been my experience so far. I hope this information helps.
Eve
PS. I should also add that Dr. Isaacson pointed out that GK failures INCREASE as the tumor volume increases and approaches 10 cubic cm. After that, it is almost not worthwile (and dangerous of course) to do GK. That is why Dr. Sisti told me that I should make up my mind about GK ASAP because any tumor growth spurt will eliminate any chance of GK success. Surgery, he said, can wait and I did not have to do it immediately and safely postpone it for next year. I did exactly that. I saw him in August of 2006 and had surgery on June 27,2007.
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Thanks for sharing this Eve.. most appreciated.