ANA Discussion Forum
General Category => AN Issues => Topic started by: rosewang on November 28, 2008, 02:11:03 am
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Hi there,
first may I say what a wonderful forum this. It's really encouraging to hear all the success stories along with support during this difficult time of my life. I'm 37 years old living in CA who just found out 2 weeks ago that I have a 1.4cm AN through an incidental finding where my neurologist was looking for Multiple Sclerosis (MS). I'm actually relieved that they didnt find anything malignant or MS. As brain tumors come, this is the best one to have!
I dont think I have any hearing loss (hearing test tomorrow) but I do have tingling sensations in my face and some fullness in the ears. So far, I've seen two neurosurgeons and both have recommended radio therapy over 3 sessions. I'm going to try to see a neurotologist at the House Ear Clinic (thanks to posters on this website!)
The question I had was why some of the posters here with smaller AN decided to go with microsurgery rather than go with radiation when their hearing was intact. I thought that radiation was the best possiblity of preserving hearing (50-70%) and that microsurgery almost guaranteed the loss of hearing based on what the neurosurgeons have told me.
thanks in advance for any input!
Rose
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Sorry you have an AN, at least you found the right place to ask!! and what a jolly bunch they are here. We are all in the same boat. What I can gather the House seem very anti-radiation, they sent me a article written by Dr. Brackman, highlighting why they are against it.
There is the "get this alien out out of me" syndrome as well.
So far the docs here in Singapore have said do radiation, next week I will speak with HEI and get their feed back.
I will email the article
Regards
Rick
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Rose:
My tumor was 1.5 cm - about the size of yours. I opted for surgery for several reasons: I found a great surgeon. Radiation stops the growth but doesn't remove the tumor. And I just couldn't deal with the thought of voluntarily letting someone cook a part of my brain.
BTW the only symptoms I had were balance problems several years before the tumor was found and some tinnitus. My tumor was discovered on MRIs taken to figure out why I had some weird vision disturbances. All doctors assured me that my tumor couldn't have caused the vision disturbance, but I haven't had it since the tumor was removed.
Good luck with finding the best doctors whichever way you go. Ask your doctors about how many patients they have treated, how many had tumors like yours, how many made full recovery (with hearing intact), etc.
Rosemary
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HI Rose,
My AN is 1.7 cm and I plan on having radiation with Cyberknife. I think many people opt for surgery for various reasons. It probably boils down to just what is more important to everyone. Perhaps the thought of the tumor remaining in the head is worse than hearing loss to them. Or possibly the fear of long term effects of radiation, even if it's very small, just doesn't sit well. I sort of thought the same thing...but after reading the website, I realized it's just a deeply personal decision based on each individual's personality and circumstances.
For myself, I'm terrified of my loss of hearing and facial paralysis. That's why I'm opting for radiation. The cyberknife is more accurate, that is why I opt for that. I have loss of hearing in my other ear, so hearing preservation in my AN ear (which I currently have 96% hearing), is of vital importance to me.
STanford is well known for treating radiation with the cyberknife, it was invented there. I highly suggest you send you MRI's, speak with Dr. Chang and do research on that facility.
I personally am checking out the 5 sessions for hearing preservation, also. I need to know about this before I'm comfortable with 3 sessions. With you 1.4 cm AN, you have time to research also. There is such a risk in everything, even if you just watch and wait, so you have to feel you are making the best decision you can...then don'l look back. FWIW, if you go in with good hearing with cyberknife, the changes of hearing preservation are 80%.
Tisha
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Hi Rose, I elected to treat my 2.5 cm AN with Cyberknife after consulting with numerous neurosurgeons (surgeons and radiotherapists). In my website below, I describe my experience and research in detail, including the individual consultations I received and the reasons I chose CK over surgery and other treatment modes. There's also a post-treatment section that describes the symptoms I've experienced since treatment, although I haven't written the November update yet (I have experienced tremendous improvement these past two months and now feel very close to normal.)
Also, this post basically summarizes the conclusions I reached when researching my treatment alternatives:
http://anausa.org/forum/index.php?topic=7848.msg83734#msg83734
Good luck and please let us know if we can be of further assistance.
Francesco
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Greetings rosewang, I am Larry and one week post-op. Dr brackmann is my main man. There are many reasons for choices. I have had several surgeries in my life ( now 67 ) so that didn't freak me out. I am also told that radiation will not shrink a non-malegnant tumor, only stop it's growth. ( possibly ) I am deaf in opposite ear so Translab was not a choice. Number one and my choice is to get the thing out of my head. Dr Brackmann's team is tops. My tumor is out and gone!!!! I chose the middle fossia approach. My side affects are some numbing on tumor side of face which God will remove for me. I live in Portland but am still in California. My stitches come out next Monday and I will fly home on Tuesday. I have lots of time on my hands if you want to talk. I am staying in Upland with my son and family.,,,,,,,,,,,You have found the number 1 site to learn,,,,, Just keep reading and asking. Somewhere is your choice,,,,,,,,,,,,,,,,Take care, Larry & Asso :)
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Hi there Rose!
I had a 5 cm AN removed surgically. If you go to a specialized doctor with extensive experience with the AN's you have better chances. Surgery was also the only option for me. But I would have wanted to get rid of the bugger even if I would have had the CK option.
Reoccurrence chance is lower when performing a total resection of the tumor. Anyway, does plenty of research as you have time... 1,4 is a small sized AN :-0
Good luck!
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Rose -
the radiation vs surgery decision is a personal decision and no one can really tell you what is best for you - other than YOU. The size of your AN gives you the option of radiation or surgery as you probably already know.
That said, do your research before making a decision. If you haven't already, I suggest contacting the ANA and requesting their informational brochures; they are an excellent resource.
It sounds like you got a few opinions on radiation and will get a surgical opinion at House. Be aware that House generally doesn't recommend radiation to patients because their bread & butter is surgery; they are the pioneers of AN surgery and have a good reputation. As someone suggested, Dr. Chang @ Stanford does CK and he's one of the best at it. You're lucky that you live in CA so both HEI and Stanford are both in your "neighborhood".
On that note, I want to mention that if possible you should consult with a doctor (generally a neurotologist) who does both surgery and radiation. Oftentimes a doctor will recommend what he/she knows and does best. For example, a doctor who only treats ANs surgically might not suggestion radiation as a good option for you - and vice versa.
As far as surgery automatically resulting in SSD (single-sided deafness) that isn't necesssarily true. A lot depends on the surgical approach, the size of the AN, and the location of the AN. While translab will take your hearing 99.9% of the time, mid-fossa and retrosigmoid both give you a chance of saving your hearing (mid-fossa more than retrosigmoid).
Good luck in reaching your treatment decision; you'll find it's generally one of the toughest parts of your AN journey.
Jan
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Hi Rose,
As others have already said, treatment decsion is tough and completely personal. I had the exact same question you did when I was diagnosed earlier this year, as do many others that come to this forum. I ultimately did choose surgery with Dr. Friedman of HEI (I'm now 3 weeks post-op), even though my tumor was relatively small. It took me about six months to finally make the decision, but once I did, I knew it was the right one for me - you, too, will just know what the right decision is for you when the time comes.
In the meantime, take a breath, do your research and know that many people are here to answer just about any question you may have and support you in any way we can. Best of luck,
Cindy
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Hi, Rose - and welcome, although I'm sorry that you have to confront an acoustic neuroma, but here you are and I trust you'll continue to find the site and forums useful.
As has been pretty firmly established by this point, the choice between surgery and irradiation to deal with your AN is really a personal decision based on a multitude of factors. One can find good reasons for each approach. Obviously, radiation is non-invasive and eliminates some of the possible risks of surgery, such as infections and CSF (cerebral spinal fluid) leaks, but it is far from risk-free. due to the fact that critical cranial nerves are still vulnerable and can be affected, leading to headaches and other complications. Frankly, as I often warn newly diagnosed AN patients: there are no guarantees. If either surgery or radiation were a slam-dunk success with no negative ramifications, every AN patient would naturally choose that treatment and there would no longer be any choice to make. For better or worse, that simply isn't the case.
We always suggest that you order and read the ANA literature, as Jan ('leapyrtwins') suggested and generally try to educate yourself on AN surgery as well as radiation in order to make an informed decision. We also suggest consulting with more than one doctor and certainly consult with a doctor that performs radiation as well as microsurgery. Unfortunately, as Jan corrected noted, some physicians are a bit biased in favor of what they know and prefer, leading them to offer skewed viewpoints regarding the approach they don't prefer and possibly confusing the patient - you.
We're not doctors and can't dispense medical advice but we're here to inform to the best of our collective and individual knowledge, as well as support and encourage you in any way we can. Please stay connect here and feel free to ask anything. :)
Jim
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Thank you everyone for all the input. It seems like people here have had great success with both approaches and all with no regrets. The optimism from many of you gives me great hope that my path may not be as horrific as I sometimes imagine it to be.
One follow up question is: can you tell on the MRI whether the tumor is touching the brainstem or how closely it is touching the other nerves? One of the posters indicated that she had some nerves inside her tumor which showed up vaguely on her MRI so radiating that would have been a horrible outcome. I dont think the MRI shows that much detail so radiation might kill some of the nerves whereas with surgery, they can clearly see what they are dealing with once they open you up?
Thanks in advance for any advice once again.
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Rose:
To the best of my knowledge, the position and size of the AN is quite visible on the MRI and the doctor writing the MRI report will note it. However, brainstem involvement is usually only found with larger tumors. The cranial nerves are very tiny and somewhat difficult to see on an MRI scan but a neurosurgeon/neuro-otologist can spot them. Because the AN grows out of the covering cells of the 8th cranial nerve, nerve involvement is always present - and problematic - when addressing an acoustic neuroma. This is what doctors in this specialty get the big bucks to know about and realistically advise AN patients on the best course of action. The fact that surgery exposes the cranial nerves to the eye (via the high-powered surgical microscope) certainly makes it a bit more precise than radiosurgery that depends on MRI and CT scans, but surgery still retains inherent risks not found with radiation. Whether those risks are worth taking is going to be based on a variety of factors, including your own feelings regarding either approach (surgery or radiation). As I often state: neither approach is 'perfect' so you have to decide what is best for your specific situation. Admittedly, it's a tough decision due to the possible ramifications of either approach. Once that decision has been made, the worst is pretty much past, in terms of dealing with angst and doubt. Then comes the surgery or radiation and at that point the healing can begin.
Jim
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Hi Rose,
That poster was me: what they thought was necrotic tissue was in fact all of the nerves enveloped by the tumor. It was pretty rare as I understand it and yes, would have been a terrible outcome if they had used radiation. And because no one was really sure what was inside the tumor, all recommended surgery, which is what I did. No regrets here. I went with my gut instinct and haven't looked back. I'm dealing with side effects but that's just the way it rolls I guess. Good luck to you; you'll do fine no matter what you decide. And you do live near some of the best and brightest in the business in LA!
Best,
Marci
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Hi Rose,
welcome to our community although you have had to join us due to a negative experience.
I am part of the group who favoured microsurgery to radiotherapy but my signature says why - my AN was just too large for a radiation.
you have a relatively small AN so you can research more and longer because this kind of tumours grow slooowly. the reason to get an MRI was just the same as yours - they were afraid of me having a Multiple Necrosis to find a big AN. Yes, this is the "best" tumour you can have, if best is appropriate in this case at all!
HEI is the center I had decided to go to too - really very experienced doctors, as far as I have heard of the other posties! I decided to go to a closer place - Germany - again very experienced! As far as I know there are a lot of posties from both groups here - CA as a whole turns out to be a very good place abundant of opportunities - Stanford, California Ear Institute, House Ear Clinic..
About the nerves and if they are seen on MRIs, I think that they are only visible to doctors when they open your head! after all, they use veryyyy powerful glasses to see the nerves during the whole surgery! we can only judge by the growth of the tumor - I, however, do not know what this exact size is, but i assume it is at your size or slightly bigger, if I am not mistaken, of course!
But do not worry about this - experienced doctors know how to do it at their best!!
Just calm down and read to be informed, but do not allow to be overwhelmed by this!!
And ask as many questions as you have! I will be (and I am sure others will) happy to help you!
Best,
Hrissy
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Hi Rose,
I had my small 8mm AN treated with CK in Sep 2007, with an interest in preserving the remaining hearing on that side. So far so good, and I am happy with the decision. If your AN is all or mostly inside the canal, something they can tell from the MRI, I think there is less issue of it being tangled up with nerves.
Happy hunting...
Steve
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Hi Rose,
I had my 9mm AN removed surgically, mainly because I went to a very experienced AN surgeon and he was very against radiation. He also told me that with GK, hearing tends to dramatically decrease after 5 yrs. I had a mid fossa approach, and have been told my hearing was saved and would be back to what it was before surgery after all the fluid was gone. Hearing has come back, but it's still a ways away from where it was pre-op. Don't know if there is still fluid, or if this is just the way it's going to be. Either way, it has improved and is perfectly liveable.
Good luck with your decision. in addition to the surgeons / hospitals-clinics that Hruss mentioned, Dr. Bruce Gantz at the University of IA Hospitals & Clinics is a very experienced AN surgeon who sees AN patients from all over the country. Another recommendation for an opinion.
Cathy
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Ok, I've talked to both Dr. Chang at Stanford and Dr. Brackman at HEI and am getting conflicting info. Dr Chang says my hearing preservation rate is 80% from cyberknife while Brackman says it will be 50%. Conversely, Dr. Chang says that any micro/invasive surgery leaves me little chance of hearing preservation while Dr. Brackman said his rate is 65% to 70%. They must be looking at different studies but leaves me even more confused. How can I make a good decision with opposing statistics from experts?
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That's a tough one. Maybe it just has to do with their own opinion? My dr told me that hearing preservation with the mid fossa was 70%. Maybe that's HIS rate of success? I don't know.
From what I've ever heard or read, House is the expert on ANs. My nurse told me that my doc only had to ever call them once with some very complicated case.
If you're confused, then maybe you need to get more opinions.
Cathy
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How can I make a good decision with opposing statistics from experts?
Perhaps consulting with a doctor who performs both surgery and radiation might help. Although no doctor can guarantee you anything 100% - I'd imagine Brackman is in favor of surgery because that's what he does and Chang is in favor of CK because that's what he does.
Jan
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Rose, Welcome to the world of Acoustic Neuromas -- it is a little shocking, isn't it?! I had precisely the same experience with surgeons claiming they would save my hearing while other neurosurgeon who were trained in radiation (including those, like Dr. Chang, who do both) basically said I would almost certainly lose my hearing in surgery. After seeing the surgeons, I consulted with three separate neurosurgeons trained in both surgery and radiation. I felt I needed all of these consults to sort through all of the conflicting information out there. I describe my own consultations and how I reached my own decision in my website below. The best way to sort through it all is by talking to more people (doctors and patients). And if you have the stomach for it, you could research medical abstracts on pubmed.com (I explain a little about this in my site as well). Eventually, you will reach clarity. Good luck and please feel free to contact me if I can help further. Francesco
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(including those, like Dr. Chang, who do both)
Am I reading this correctly? Dr. Chang does both surgery and radiation? I obviously haven't read every post on this forum, but I don't recall anyone ever mentioning him doing surgery.
If he does do surgery, I apologize for my assumption that he only did radiation.
Jan
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Hi Rose,
I think Dr. Brackman is telling you about averages from all radiation treatments, while Dr. Chang is telling you about his own results at Stanford; and conversely, Dr. Chang is telling you about all surgeries, while Dr. Brackman is telling you about his track record with middle fossa at HEI. They are not comparing experts to experts.
If you are down to middle fossa with Brackman, or CK with Chang, then you are down to the two best options available for preserving your hearing. Since no one can tell you if either procedure will work in your particular case, this is about as far as facts and figures will get you. Fortunately, if you choose one of these two, you will be making a good decision, no matter which one you pick.
Time for a gut check, I think. What does your stomach think you should do? If I said I was going to flip a coin, which way do you secretly hope it would land?
Steve
PS: Yes, Jan, Dr. Chang is a neurosurgeon. He does do some AN surgeries, but I think most of his surgery work is on other skull and spine tumors. He is partial to CK for ANs. ;)
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Thanks, Steve.
It wasn't my intention to mislead anyone, but I'm thankful for Francesco (and you) correcting me.
Guess you can learn something new every day ;)
Jan
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I think you hit the nail on the head, Steve. Dr. Brackman is probably lumping ALL radiation...Gamma, CK, Novalis. And with that, 50% is probably the correct %. I was lying in bed last night a bit miffed and upset to think a world-renowned AN surgeon would be misleading prospective patients. However, if Rosewang specifically said CK, then he was misleading her. I know this is a business, and I appreciate that...and I'm sure that docs try to "pull" you over to their side by not being very upfront about all the options and statistics (I'm sure some do), but I do find it a bit unethical and immoral for them not to do so (even if it's just a little), with so much at stake for all of us...just for some greenbacks.
I think I"m going thru my "angry" stage of grieving these last few days.
Tisha
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I know it was an eye opening experience when I started dealing with drs. after being diagnosed. I can't even get drs. to agree on my diagnosis, much less a treatment. Most drs. give you info based on their expertise, and they do defend their own little arena. I don't think it is malice on their part, just a bit of being overly confident in their own territory. Trouble is, it leaves us as patients scrambling to find the middle ground in alll this. I've never had to become such an advocate as I have in this particular stage of my life. My advice to anyone is to do your homework! (ignore the fact that I am a teacher!) :D
Priscilla
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Hi Rose,
I think Dr. Brackman is telling you about averages from all radiation treatments, while Dr. Chang is telling you about his own results at Stanford; and conversely, Dr. Chang is telling you about all surgeries, while Dr. Brackman is telling you about his track record with middle fossa at HEI. They are not comparing experts to experts.
If you are down to middle fossa with Brackman, or CK with Chang, then you are down to the two best options available for preserving your hearing. Since no one can tell you if either procedure will work in your particular case, this is about as far as facts and figures will get you. Fortunately, if you choose one of these two, you will be making a good decision, no matter which one you pick.
Time for a gut check, I think. What does your stomach think you should do? If I said I was going to flip a coin, which way do you secretly hope it would land?
Steve
PS: Yes, Jan, Dr. Chang is a neurosurgeon. He does do some AN surgeries, but I think most of his surgery work is on other skull and spine tumors. He is partial to CK for ANs. ;)
As usual, I would agree 100% with Steve's response. To provide a little more elaboration on the PS, last conversation I had with Dr. Chang he indicated he was about 50/50 An surgeries vs. CK, but the surgeries were pretty much limited to large ANs (> 3 cm) and mid to small size he favors CK
Mark
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That's a tough one. Maybe it just has to do with their own opinion? My dr told me that hearing preservation with the mid fossa was 70%. Maybe that's HIS rate of success? I don't know.
From what I've ever heard or read, House is the expert on ANs. My nurse told me that my doc only had to ever call them once with some very complicated case.
If you're confused, then maybe you need to get more opinions.
Cathy
I think it's important to keep in mind that surgery results are much more size driven than radiation the small to medium range where they are both options. Mid fossa tends to be utilized only in smaller size tumors where hearing preservation is generally higher. On the flip side there was an excellent study by UCSF a while back comparing Mid Fossa to Trans lab outcomes relative to facial nerve preservation which demonstrated comparable results below 1 cm , but declining results for mid fossa from 1-2 cm.
As a general statement, I think its safe to say that in small AN's ( < 1 cm) that radiation and surgery can offer comparable facial and hearing preservation results, but beyond that size surgery outcome probabilities begin to decline while radiation stays fairly constant.
Mark
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I think Steve made a good remark about the coin flip. I do secretly wish for CK but that is because I am a wimp and dont like knives!
To clarify, I dont think I specifically said CK when talking to Brackman but may have said radiosurgery. I actually think both docs have a point depending on which data you reference since I dont think there are any large studies which have a 3 decade history showing the long term effects of CK or GK while the recent reports do show better results for someone with my stats. However, the research reports are limited to a hundred or two hundred people in terms of follow up which is what makes me a bit nervous. Dr. Chang did say out of 700 patients that he treated with CK, he only had 8 or 9 patients where they had tumor growth or some other kind of failure (not sure what). And if out of his patients, his rate is 80%, that seems pretty high to me and better than the 65% that Dr. Brackman quoted me for the retrosigmoid approach he recommended for me.
At this point, I am leaning towards CK but still need to ask a few more questions before I take the plunge. Thanks for all the supportive advice guys! will keep you posted
Rose
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I do secretly wish for CK but that is because I am a wimp and dont like knives!
Rose -
Don't sweat "the knives". If you do decide on surgery, you'll be asleep and never feel a thing. In addition, the guys with "the knives" have a whole of experience with them.
I can understand your concerns, though. One of the things I found freaky about radiation was the metal frame they would have screwed in my head :o Interestingly enough, that scared me a whole lot more than the "the knives" :D
Just call me crazy - it's been done before ;)
Jan