ANA Discussion Forum
General Category => AN Issues => Topic started by: pswift00 on June 17, 2008, 09:03:22 am
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Folks,
Hello, this is my first post. I was diagnosed about two weeks ago with a 2.9 cm AN on my left side. I am a 30 year old male. The tumor was discovered quite by accident- I had the flu for 5 days straight, and went to see my PCP complaining of fevers, night sweats, headaches, and a stiff neck. He immediately sent me to George Washington University Hospital to rule out meningitis. Once I got to the ER, my headache had subsided a bit and I was joking around with the hospital staff, so they quickly ruled out meningitis without having to do a spinal tap, which was all good. However, the doctors decided to do a CT scan to rule out an anuerysm 'while they had me there.' So, long story short, they find a big meatball in my brain, admit me to the ICU overnight, do the MRI, and make the diagnosis. Currently I have absolutely no symptoms whatsoever- zero hearing loss, no balance problems, vertigo, facial numbness, etc. My consulting neurosurgeon, Dr. Caputy, told me that, given the size of the tumor, I still have the option for radiosurgery. He also laid out all of the depressing statistics with regards to hearing retention, facial paralysis, etc related to microsurgery. We were warned in advance that the guy had no bedside manner whatsoever, but what he was telling us came as no less a kick in the stomach. My wife has a friend who is a neuro-oncologist down at Mayo in Jacksonville, FL, and she sent a copy of my MRI's down to him and he had his staff take a look and he presented each of them with the question- if this were your son or daughter, what form of treatment would you opt for? Both of them opted for microsurgical recision. Quite frankly, I'm completely confused as to why they would prefer this option over radiosurgery given everything I've read about microsurgery the possible side effects, consequences, and outcomes. They say the tumor is pressing on my brain stem, so I'm guessing that, along with my age, is why they're leaning towards that approach. After all, if I can expect to live another 60 years, and given the size of the tumor right now, maybe the best approach is to remove it all together, and given my age maybe they expect my recovery process to go a bit more smoothly than someone who's a bit older.
But really, I'm just hoping someone here can shed a little light on this for me- if I'm looking at a 4-5 week minimum recovery time for microsurgery, plus the hearing loss, high risk of long-term, if not permanant facial paralysis, balance problems, etc., then why on Earth would anyone choose such an option over radiosurgery or FSR?
Thanks in advance for taking the time to read this and your support. I've always been a 'stop crying and start finding a solution' kind of guy, and I'm really trying to approach this issue in the same manner, but it's still pretty hard not to get overwhelmed sometimes when I think that my quality of life may be forever diminished by this.
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Good morning!
Well, m aybe not "good." So sorry to hear about your diagnosis, but glad you found this forum. So, here are my thoughts...
First, know that most ANs are very slow growing, so you have some time to research and consult with medical experts.
Second, it is very important that you find a treatment team that has experience with ANs. This would be true no matter which aproach you choose. Your risk of after effects is less with an experienced treatment team. You'll find folks on this forum who have had all different types of treatment from Gamma Knife to Cyber Knife to microsurgery (me). I think we'd all tell you that you need to have total confidence in your doctors - regardless of the approach you chose, someone is going to be messing around by your brain!
As for why some may be recommending mcrosurgery - I can only speculate on that, but I would guess that your young age may be one of the reasons. A bigger reason may be the placement of the AN - if it is pressing into your cerebellum, post radiation swelling may be more of an issue.
I will also say that facial paralysis is not a given with microsurgery, although the risk is certainly there. I am almost 7 weeks post translab surgery and have some temporary paralysis. It is frustrating, but I am confident it will resolve in time. This particular after affect depends on how close the tumor is to your facial nerve - in my case the facial nerve was stretched across the top of the tumor and that is what caused the palsy.
I am guessing you are on the East Coast? If so, you are close to some excellent treatment options. If you'd let us know where you are located, I am sure you can get some names of specific doctors who specialize in ANs.
I now you will get a of other responses to this. Meantime, read through some of the other threads - MaryBKArix posted a recent very detailed thread on her cyber knife experience; I have posted details on my translab; and many others have shared their own experiences. Many of us are very willing to talk with you on the phone, if you'd like - in my case, if you would liek to talk at any point, just send me a PM and we'll exchange phone info.
One final suggestion - request the AN brochures from the ANASUA (this website) as they contain some great basic information. And, lastly, try not to get overwhelmed - there is a lot to learn and it can all feel like a bit much at times. Give yourself time.
Debbi - New Jersey
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Sorry about your diagnosis.
In re: to microsurgery, there is a GOOD chance, that in EXPERIENCED hands, you could preserve some hearing and avoid facial paralysis. Where do you live?? The people on this forum can recc. treatment centers with the best results.
Sam
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Some quick comments and a link:
1. 2.9 cm is the upper end of the range for radiation. Size is an issue, especially for post treatment swelling and pressure on the brain stem.
2. You can often get a free evaluation of an MRI if you can mail it to one of the Cyberknife doctors on the CK forum: http://www.cyberknifesupport.org/ . It is well worth the time to see what they have to say, whether you just ask a question or send off an MRI.
3. The combo treatment is another option: debulk the tumor surgically, to reduce its size, while staying clear of any nerves. Then radiate the remainder. This gives the benefits of both treatments while minimizing side effects.
It will change your life in some way, but most people make it through just fine, and go on to live rich full lives despite it all. It is a chapter in your life, but not the whole book.
Steve
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Hello~
Debbi had some very good points and the most important is to research & do what YOU are comfortable doing. You must have a strong PEACE about your decision because you will have to live with it. I don't know much about GK or CK, but isn't the size of your tumor right on the edge? Some of the others can certainly address that more clearly. IMO, if your wife's friend was asking the Dr.s' as a colleague about what they would do if it was their child, then I think I would put a lot of stock in their answers IF they are schooled on BOTH methods: surgery and radiation. Does that make sense? I'm not going to sugar coat anything - I DO have permanent facial paralysis (& have for over 12 years) but that hasn't stopped me one bit!! Do I want to look like this? NO, but I am choosing to make the most of life and I am not going to let a little thing like that stop me!! I would be glad to chat with you on the phone if you want to PM me your number or you can check out my blog (address below) & see what a great life I have 12 years after surgery!
Good luck in you journey!
K
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pswift00:
Welcome to the forum and I'll hasten to add that I'm sorry you have a reason to be here but I'm glad you found us.
Granted, your AN is treatable with radiation, which seems the logical choice. However, radiation is not a panacea and carries it's own risks, albeit, fewer than microsurgery. The doctors you've consulted are looking at a few things, including the possibility of future regrowth and of course, at your relatively young age, the fact that you'll have reached close to the safe lifetime radiation doses your body can safely handle, which is always a factor. The fact that the AN is pressing on your brainstem is obviously a major factor in their recommendations. Besides, contrary to what seems to be a common belief, AN surgery, while challenging for the surgeon, does not automatically result in facial paralysis, and the other complications you've undoubtedly read about. I had a very large AN, pressing on my brainstem. I underwent microsurgery to 'debulk' the tumor down to about the size yours is. Then, 3 months later, I underwent 26 FSR treatments. I recovered completely from the surgery and had no ill effects from the radiation treatments, which ended 20 months ago. (see my signature). I may be fortunate (blessed, really) but I'm not the only AN patient posting here that had a successful (no complications) AN-removal surgery. Obviously, the final treatment decision is yours, alone. I'm simply offering my experience to give you another perspective.
The fact that you have no symptoms is very encouraging. I would strongly advise that you have either the surgery or the radiation asap, before you suffer hearing loss, facial numbness, etc, which you likely will, if the AN grows. Frankly, your hearing may be diminished with whatever treatment you choose but the sooner you do something, the better. However, don't be overly hasty. Do your research (this site is chock-full of information you can use) and choose your team - be it surgical or radiation - carefully. Look for as much AN-related experience as possible on doctor resumes. Others will add more advice on this subject as they respond to your post.
I wish you much success in coming to an informed decision on treatment of your AN. We can't offer medical advice but, as AN patients, we stand ready to assist in whatever way we can. Don't be a stranger. :)
Jim
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Thanks, guys- I live in Alexandria, VA and work in downtown DC. I have an appointment next week to talk to some folks at Georgetown University Hospital. As previously stated, I was diagnosed at George Washington UH by the head of the department, Dr. Anthony Caputy. I'm currently getting my records together to send to Johns Hopkins, but it seems like that's one of those places where the doctors choose their patients and cases, not the other way around. If anyone can recommend any other hospitals in the area, I'm all ears.
P.S.- I received the packet from ANAUSA yesterday and reviewed it. The post-microsurgery expectations weren't terribly reassuring, but I know the point is to lay the WCS out there in order to be prepared for it. The internet has also been a wealth of information.
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Hi and welcome. I see I'm tuning in a little late but will give you my two cents worth. Some of what I have to say has been said by others already.
2.9 cm is in the upper range of radiation, which is probably why the doctor suggested surgery.
Yes, surgery usually has a 6 week recovery period and possible side-effects, but there are some very positive stories out there. IMO, I am one of them. I had surgery approximately 1 year ago and with the exception of SSD (single-sided deafness) I have no lasting surgical side-effects. SSD can be alleviated, not reversed, with an aid (Transear, Cros aid, or BAHA). I opted for the BAHA - which is another story for another time.
Everyone's AN journey is different and you may or may not experience side-effects from surgery - or radiation, for that matter. The most important thing is to find a doc with experience in treating ANs.
I'm glad to see you got information from the ANA. I'm assuming you received a WTT (willing to talk) list. If so, I would recommend contacting someone in your area and ask who treated his/her AN.
Please feel free to ask us anything; we are all here to support you, regardless of your treatment decision.
Good luck,
Jan
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HI again PSwift!
If you do a search for "elderbirds" on this forum, you can PM her (her name is Hope) and find out where she had her surgery. She had surgery about several months ago in the DC area. I'll also send her a quick email and ask her to look for your post.
And don't let us folks who ended up with temporary crooked smiles scare you - there are LOTS of people wh have zero facial problems. As you say, best to be prepared for WCS, but your experience may be completely different.
Steve's suggestion to send your films to the cyberknif forum is great! You may also want to send your films to House Ear Clinic in LA - even though I think they only do surgery, they are a leader in the field and will do a free phone consult with you after receiving your MRI.
Good luck!
Debbi
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Kia Ora from Auckland, NZ! 4 weeks ago, we were just diagnosed, too. And my surgery , translab, because the bugger is so large and b/c I am young (40) my hearing will be sacrificed/gone on the left, but hopefully, any facial paralysis will be minimized. Health system is a bit different here and they basically told me what I had and what they were going to do......while I read everywhere else about interviewing docs and getting opinions till you and your familiy were comfortable. Well, now with time and talking, we are comfortable and all will be well, but we know recovery is going to be a toughie.
I empathized with you at the beginning of this quest -- but urge you to have an advocate. My husband asks the questions I might be too emotional to get out, and he helps translate for the docs so I don't only hear the worst case scenrio. Have an advocate and a safe spot or someone who will just let you scream and cry or be quiet if that is all you want to do.
Past few weeks, I've been collecting tumour sized rocks from the beach. Early this morning my sister and I tossed them back to the ocean. Gone. Sounds hokey, but was theraputic.
Now, I feel like I can face the dressing gown and hair shave....and all else.
God be with you. Ask questions. Cynthia
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Past few weeks, I've been collecting tumour sized rocks from the beach. Early this morning my sister and I tossed them back to the ocean. Gone. Sounds hokey, but was theraputic.
Actually Cynthia this is an excellent idea. Wish I would have thought of it :)
Your advice to have an advocate is also a good idea. At the very least, AN patients usually find it helpful to take someone to consultations with them because some of what we are told is so overwhelming. I think that several members of this forum have also recommended recording the consultation so you have something to refer to later since things can be such a blur.
BTW, very precious picture of your children. They are beautiful - and so sweet ;D
Jan
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Thanks Jan -- yes i had to have an advocate figure out the uploading hoopla to get it posted.
i am showing the docs this pic of my babies cuz they will have to bring me back to them better than ever. no discussion.
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I second the advocate suggestion! That was a life-saver for me. it is very hard not to overload at times.
Cynthia - my translab was 7 weeks ago and I feel better each day. I did, unforunately, end up with facial palsy, but it is slloowwwwlllyy getting better. Love the rock idea ...
Pswift - take a few deep breaths every now and again - you're in for a wild ride!
Debbi
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Hi! I'm sorry to hear of your diagnosis. I'm actually from Jax, Fl, and just had a 3.5 cm removed surgically on May 9th. I was also told that radiation was not best for me b/c I am young, 34 and because it does not get rid of the tumor--it only shrinks it. They felt that I would deal with a lifetime of MRI's and wondering--and treatments. They felt mine had regular "growth spurts". They may have told you this also b/c of the location--pressing on the brainstem. I had wonderful surgeons and a great result. I did lose my hearing on that side, but I already had a loss to begin with. I have no facial paralysis and I know one other girl--late 20's who had a 4+cm removed by these two surgeons and also had no facial palsy and did retain some residual hearing post surgery. Dr. Greene was my neuro-otosurgeon and Dr. Chandler was my neurosurgeon. Best of luck with your decision on treatment :) We are here for you!
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I am so sorry to hear your results.
I had microsurgery, I did have some problems but I have done a lot of healing. I did lose my hearing on my left side, I was back to work in 3 weeks I asked my doctor if I could and he couldn't see why not. Looking at me now you would not know that I had facial paralysisation, when I speak you can see that my left side of my mouth struggles to move. I have not had to use drops in a few months. So there is recovery . Then their are so many others in this forum that did not have any problems.
eve
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cynthianz
I forgot to mention I had long hair at the time and they only shaved the small area that they open. Horseshoe size behind my left ear.
So there is no reason they can not leave your hair in tack except for the area they are going to work on.
eve
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Sorry about your diagnosis. I remember the day I got mine 9 months ago. Little did I know then how my life would change so drastically. I am alive but a different person and a different life today. I am very slowly getting better. I am seeing a physical therapist for my balance a facial muscle retraining. Here's a survey I wish I had know about 9 months ago. Maybe it will help you in making a decision.
http://www.dinagoldin.com/anarchive/life.htm
Best wishes on your decison
David
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I was in a similar boat, diagnosed with a 2.6 cm AN at 34 years old, with good hearing and relatively mild symptoms. My instinct was the same as yours: avoid surgery if possible. What I have learned suggests that on average, quality of life is generally better after radiation as compared to surgery. I suspect this is even more true with larger tumors like mine and yours, where surgery presents higher risks of hearing loss and facial nerve damage. In my case, the probabilities of losing hearing in surgery was essentially 100% (v. 75% hearing preservation w/ Cyberknife). The risk of facial nerve damage was variously quoted to me as between 10 - 20% (versus a negligible risk with Cyberknife).
That said, there are certain circumstances where radiation is simply not an option or a bad idea, and the size of your tumor means you need to be careful in making sure radiation is a safe and advisable option in your case. Though 3 cm or so (sometimes bigger) is generally the cut off, the location of your tumor could rule out radiation. As much as I hated the idea of surgery, I had to keep my mind open to that possibility if the realities of my situation required it.
Like you, I was told by the first two doctors I saw (including one neurosurgeon who is highly renowned) that surgery would be necessary because of the location of my tumor. It was only when I consulted with neurosurgeons trained and experienced in radiosurgery that I received opinions saying radiation was perfectly feasible and a good option in my case. I have no idea how the first two doctors could have been so cruelly negligent in the information they provided to me. I chalk it up to extreme bias caused by their narrow training in microsurgery (and their limited experience treating ANs). My point here is that you need to speak to a few doctors at least -- and not just general neurosurgeons. Ideally, consult with neurosurgeons who are experienced treating ANs on a regular basis using both surgery and radiation.
I believe a fellow whose screenname is "jb" recently had Cyberknife done at Georgetown. His AN was around 2.5 - 3 cm as well. Definitely check out the CK team at Georgetown if you are able and think about emailing jb directly to hear about his experience.
Also, here is a link to an email exchange between myself and a couple of the doctors on the Cyberknife Patient Support Forum (Steve linked to it in his post above). If you read through the emails, you will get some sense of the decision-making process I was going through right after my diagnosis:
http://www.cyberknifesupport.org/forum/default.aspx?f=14&m=13837
I had CK in August 2007 and after 8 months of feeling tired and quite horrible (but not missing any work), I'm now totally active again - running, mountain biking, etc. I do have mild symptoms but I am doing everything I was doing before the treatment. I expect even the mild symptoms will continue to improve with time.
Please email any time at all if you have any questions about my experience.
Special note to LADavid: everything I've read on this forum says you will improve with time, slowly but surely -- stay strong and hopeful. I know there is a purpose in what this condition has brought our way.
Good luck and be well.
Francesco
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pswift00,
I live in Fredericksburg, VA and have attended 2 meetings of the DC area support group. Some of the members have had surgery with doctors at Hopkins - Tamargo, Minor, Francis, Limm are the names I can think of right now. I also know of 7 patients who have had surgery with Dr. Sanjay Prasad with good results. Through this site I came across the names of Dr. Sahni and Shaia in Richmond. I've spoken with 4 of their patients who had nothing but good things to say about them. I hope that helps some. If you're interested in attending a meeting just email me and I can give you more information. Good luck in your search. I'm still trying to decide whether to have surgery on mine and it's truly the hardest decision I've ever had to make.
Lisa
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Francesco,
Thanks for that link. Although I have seen quite a few exchanges on the CK forum, that is a particularly good one, especially as you progress through various doctors from "no way" to "okay" on the radiation question. I hope your results will continue to stay good and improve even more.
LA David:
Having a translab at House for a 1.5 cm AN was a pretty good bet; I'm not sure you would have gotten better odds with radiation. I don't think you need to second guess your decision; it is just by chance that your AN landed in the small percentage that have lingering facial nerve issues. I know it sucks, but I have a feeling that the down time and the shifting career thing are going to result in an interesting first book from you sometime in the future. You just have to duck and weave, and move forward on your new path. :)
Steve
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I had surgery at Hopkins 2 months ago and had a "wonderful experience" (if you can consider this surgery wonderful). It does seem a little weird that they review your records and then match you up with a doctor. They are actually trying to find the best doc for your type of tumor. If you have the name/names of some doctors you can request to consult with them. They work in teams, so some work better together than others. For example, the neurotologist was recommended to me by my ENT, when I saw him, he gave me three names of neurosurgeons that he worked with. I sent them my films and consulted with one of them. If you want more info or doc names PM me. good luck in your research.
Hope
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Hope -
hate to hijack this thread, but was wondering how your recovery is going.
It's been a while since I read an update from you.
Jan
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Hi folks, Swift here again. First off, thanks to all for your support, encouragement, and advice. This site, the ANA, and the internet in general have been a godsend.
I met with Dr. Walter Jean at Georgetown yesterday- very nice guy with a good beside manner. Very upfront, honest, and realistic about my condition and what I can expect from each treatment option. He advised against CK treatment for me given the size of the tumor, my age, and a few other factors just as the doctors down at Mayo did. Frankly, I'm kind of relieved that the CK treatment really isn't on the table for me, not so much because I'm a masochist, but because I know I would have been agonizing over and second-guessing my radio vs. micro surgery decision for a long, long time. Middle foscia surgery is also out just b/c the tumor is so damn big. So I got some CT's of my 'temporal bone' this morning and next week it's off to the ENT for a consultation, then off to Dr. Jean again to weigh translab vs. retrosig. Given the statistics, I'm leaning towards translab at this point b/c it seems the possibility of preserving the facial nerve far outweighs the risk of hearing loss with the retrosig approach (he's quoting a risk of 70% for loss of useful hearing with retrosig). He said they pulled a 5 centimeter AN out of a girl about my age a few months ago doing a translab and left a little bit of the tumor behind on the facial nerve, and she came out of it with no facial weakness or numbness. It does concern me that he said they only do microsurgery on about 2 AN's a year on average (he said most cases they encounter are small enough that the patients elect the cyberknife), but as I'm sure you all know, these damn things are so rare that there just aren't a ton of opportunities for surgeons to do these procedures. I do know that Georgetown has one of the absolute best neurosurgery programs in the country, though. If I do decide to go with Georgetown, my surgery will most likely be performed at the end of July or the begining of August.
BTW, I got that 'giddy doctor' vibe again. It seems that every neurologist and neurosurgeon I've talked to so far is just ecstatic to get to examine me and my MRI's and stuff, and are just flat-out bowled over that I don't have any symptoms at this point. Any of you guys gotten that vibe, like the doctors see you as some kind of awesomely rare case study or something like that, or maybe they're just giddy about AN's in general?
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Pswift,
You are a very young man to have one of these. I am sorry that you have this do deal with but I think you sound like someone that will handle it well and not let IT handle you. I am guessing that due to your age & the size of the tumor is why they are suggesting removal. I had not heard Steve's idea before about size reduction and then radiating but I really like the sound of it. You might ask about this unique approach.
Has anyone ever been told by their doctor that once have GK treatment (not sure if this is true for CK or not too), you cannot have surgery. He told me that the GK makes so much scar tissue that microsurgery is no longer possible in the future. Anyone been told this? He also told me that if I had been in my mid to late 70's they would have done nothing for a 2.5 cm even though pressing the brainstem. Best wishes to you!
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Swift:
I'm pleased to learn that you're moving ahead with your decision on treatment and apparently feel confident with the doctors you've encountered. I agree, based on reputation, that Georgetown is an excellent facility. We can empathize with your relief that radiation has been effectively taken off the table in your treatment decision because the radiation vs surgery issue is often exasperating.
I only saw two neurosurgeons prior to my surgery. The first was clearly intimidated by my 4.5 cm AN and I gave him a pass, immediately. The second was just the opposite. He has been operating on Acoustic Neuromas for decades and saw mine as a challenge of sorts. He was interested, cautious and conservative - but hardly intimidated. Because the surgery went so well, he is still somewhat fascinated by my case and (with a big grin) calls me his 'star patient' at my semi-annual visits to review my latest MRI scans.
Because AN's are relatively rare, I'm not surprised that neurosurgeons are sometimes 'giddy' when presented with one, especially when symptoms are basically non-existent, which is also quite unusual.
Please let us know what your final decision is and when and where you'll be treated. Thanks.
Jim
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To comment on a couple of points in Sabuck's post:
I had not heard Steve's idea before about size reduction and then radiating but I really like the sound of it. You might ask about this unique approach.
I don't think I've heard about it in less than 3 cm AN's where radiosurgery can be considered as the primary treatment, but the "debulk and radiate the residual" approach as Jim Scott had so successfully is becoming much more common for large AN's. The primary risk of cranial nerve damage is in the last 10% or so of tumor removal where it needs to be "teased off". There is a significant number of surgeons who leave a small piece in even small to medium size AN surgeries with the intent of devascularizing it. Arguably, most of the re-growth following surgery is the result of when this doesn't work.
[i]Has anyone ever been told by their doctor that once have GK treatment (not sure if this is true for CK or not too), you cannot have surgery. He told me that the GK makes so much scar tissue that microsurgery is no longer possible in the future. Anyone been told this?[/i]
I hope not, but there are certainly a number of surgeons who would make such a mis-statement. for the 2-3% of radiated AN's that fail to control growth there are a number of studies that assert that a surgical removal is more difficult, the same or easier. Clearly, the texture will be different, but understanding that none of these studies also control for the "skill and quality" of the surgeon, I think it's hard to draw a clear conclusion. The irony to me is that no one talks about the difficulty of a second surgery and I'm pretty sure there is a significant amount of scarring that occurs in that process. Sort of like the old adage of Sherman through Georgia. I think any second treatment will have risks associated with the impacts of the first
Mark
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I've been told that microsurgery after radiosurgery is difficult, but I have not heard anyone say it's completely out of the question.
The thing that I liked most about my consult with Dr. Jean is that he suggested a nearly identical approach to the one I had in mind- that is, to remove as much as the tumor as possible without damaging the facial nerve, then blast what's leftover with radiation at some point down the road. The translab approach was not something I was even considering originally, but when he said I had a 70% chance or so of losing all useful hearing via the suboccipital lobe approach anyway, preserving that facial nerve seemed like a much better bet. Not that I've made any formal decision yet, mind you.
Oh, btw- I learned something else that's interesting. Apparantly the residency rollover day is July 1st for most hospitals, so I was told by a nurse there to try and wait at least until August to have the surgery so I don't have to deal with the new & inexperienced residents. Good piece of advice, me thinks.
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It does concern me that he said they only do microsurgery on about 2 AN's a year on average (he said most cases they encounter are small enough that the patients elect the cyberknife), but as I'm sure you all know, these damn things are so rare that there just aren't a ton of opportunities for surgeons to do these procedures.
pswift -
although I'm sure some will disagree with me, I don't see this as a huge problem. As you say ANs are so rare that there aren't a ton of opportunities for surgeons to treat them. I have no idea how many ANs my neurotologist has surgically removed, and I may be the rare exception on this forum, but I really don't care. At the time of my surgery, he'd been treating ANs for 16 years and IMO he had enough experience. He knew he could do the job, I knew he could the job and my outcome was excellent - apart from my SSD which he had no control over.
I've always said to go with your gut when making a decision on which treatment and which doctor is right for you, and that's my advice to you.
Jan
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Pswift,
after reading the last few posts, I'd offer the following observations:
Given the statistics, I'm leaning towards translab at this point b/c it seems the possibility of preserving the facial nerve far outweighs the risk of hearing loss with the retrosig approach (he's quoting a risk of 70% for loss of useful hearing with retrosig)
I would agree that translab would give you the best chance of minimizing facial nerve impact if you go with a direct surgical removal. I think your surgeon is being overly optimistic on hearing preservation with retrosigmoid anyway. My AN was 2 cm or about 50% smaller than yours in cubic terms and several very well known neurosurgeons quoted me a 20% chance of retaining my hearing at that size. In surgery, the larger the AN the lower %. I think the interesting question to pose is if you chose a partial removal and radiation to the residual does it increase the hearing preservation odds, thus why would you use translab which destroys the hearing mechanism entirely. Don't know the answer to that one but something to consider.
It does concern me that he said they only do microsurgery on about 2 AN's a year on average (he said most cases they encounter are small enough that the patients elect the cyberknife), but as I'm sure you all know, these damn things are so rare that there just aren't a ton of opportunities for surgeons to do these procedures. I do know that Georgetown has one of the absolute best neurosurgery programs in the country, though.
It would concern me too. I think the vast majority of people on this board would agree that a surgeon needs several hundred of these procedures under their belt to be considered the "best of class". The fact that Georgetown , or Hopkins, or Stanford , or UCSF are highly rated overall neurosurgery programs is more a function of things like how many things they treat, how much they've published, new treatment innovations, the recognition of their doctors professionally. However, the only thing relevant in your choice , is the overall experience they have with what you have ( an AN) and the experience of the individual you're entrusting the scalpel to the day of surgery. 2 a year pales when compared to a House ear or other top AN specialty places that do that many in a day or week.
BTW, I got that 'giddy doctor' vibe again. It seems that every neurologist and neurosurgeon I've talked to so far is just ecstatic to get to examine me and my MRI's and stuff, and are just flat-out bowled over that I don't have any symptoms at this point. Any of you guys gotten that vibe, like the doctors see you as some kind of awesomely rare case study or something like that, or maybe they're just giddy about AN's in general?
I'll let you in on a secret that the head of neurosurgery at Stanford told me years ago. Neurosurgeons absolutely love to do AN surgery's because:
1) the proximity of the cranial nerves makes it an extremely technical and challenging procedure
2) Because AN's are benign and in virtually all situations patients are minimally symptomatic and in very good overall health, they have very little concern over severe post surgical complications which accompany most patients who require brain surgery.
3) The increase in radiosurgery as a primary option is reducing the number of AN surgeries in general
So, yep, I would believe they're giddy about the AN, but I'm not sure it's associated with your lack of symptoms ;D :o
Mark
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It would concern me too. I think the vast majority of people on this board would agree that a surgeon needs several hundred of these procedures under their belt to be considered the "best of class".
Just call me a rebel ;D
Seriously, Mark, I'm wondering how do doctors that aren't considered "best of class" get to be "best of class" if patients always look to the same docs to perform their surgeries? I mean, how do other doctors "break into" this category? Lots of patients equals lots of procedures, so I would think that logically patients like me have to put our faith in those who aren't "best in class" in order for them to move up the ladder.
And what happens to the "best of class" doctors as they get older and don't practice anymore?
One of the reasons I ask is because I'm sure you - and others - probably wouldn't consider my doctor "best in class" - but his partner certainly falls into that category. So does that mean when his partner chooses to retire, my doctor will automatically "move up"?
Your thoughts, please.
Thanks,
Jan
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Jan~
My thoughts exactly...it is kind of like the old saying when talking about people that won't hire anyone that doesn't have experience - how are they going to get experience if no one will hire them????
K
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Jan,
I'm not sure you are a rebel or not, but you are certainly an excellent risk taker ;)
I'm sure you had an excellent doctor and I know you're happy with the care you received and outcome. Certainly, surgeons have to start on someone first, second and work their way up the experience ladder. Maybe some are exceptional enough to have a shorter learning curve than others, but not every surgeon is equal. There are those who are top of their class in demanding medical schools and there are also those practicing who finished at the bottom as well. The indisputable reality is that an AN surgery is extremely technical that touches on an individual's quality of life when you consider hearing and facial function. The overwhelming consensus is that it takes a developed expertise to have a good chance of delivering a great outcome. There are no guarantees that an experienced surgeon , such as at HEI, won't have a bad day either , but the odds are better than someone doing their 5th one ever. Yes, someone has to be the doctor's first, and yes, that person can have a good outcome, but I'd bet the odds are significantly less than going with a doc who has done it a 1000 times. It's not a risk that I would choose to take given the consequences, but like everything else it's a personal choice and wise people can disagree.
Mark
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Swift:
Yes, it is true the new residents start on July 1st. Many hospitals do not let residents do AN surgery, and if they did, I doubt any attending would let them touch a patient in July. Now the team that comes by and sees you in the hospital is another story. It will be filled with new residents and medical students who are going to be really excited to see a patient who had an AN.
Having a rare tumor makes us celebrities of sorts. Instead of being asked for our autographs, we are asked for our MRIs.
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Mark -
thanks for the response; it's very insightful, but it doesn't really answer my question :)
Maybe K said it better than I did. How are surgeons supposed to become experienced if no one "hires" them because they don't have experience? Obviously the "best of class" surgeons had to get their start somewhere. And if all patients go with the "big guns", what happens when the "big guns" retire or die? At that point do patients start to give "the other guys" a fighting chance so that they might someday become "big guns"?
Certainly if you look at the odds, docs who perform more surgeries and are more experienced should have better outcomes, but that isn't always the case. I could take a handful of surgery patients from this forum who had the same surgeon and they would all have different outcomes - ranging from perfect to "lots of issues". IMO the best doctor in the world can't guarantee anything as far as results go.
I also want to stress that while my doc certainly doesn't have the reputation of say a Dr. Brackmann, he isn't fresh out of medical school nor is he inexperienced by any means. He's definitely done his share of AN surgeries, but given the number of ANs that are out there, it would have been totally unrealistic for me to have expected him to have done hundreds of surgeries each year.
As you say, I had an excellent doctor (two, actually) and I am ecstatic with my outcome. Am I an excellent risk taker? I don't think so. I think I am just someone who believes in herself and her decision. I am also someone who is passionate about doing what I feel is best for me - regardless of what others may think. I want to encourage pswift - and everyone here - to do what's best for them and to be passionate about it. You are right, personal choice is what it's all about.
Jan
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Jan,
thanks for the response; it's very insightful, but it doesn't really answer my question
Well, it was the best answer I had for the price offered ;D
How are surgeons supposed to become experienced if no one "hires" them because they don't have experience? Obviously the "best of class" surgeons had to get their start somewhere. And if all patients go with the "big guns", what happens when the "big guns" retire or die? At that point do patients start to give "the other guys" a fighting chance so that they might someday become "big guns"?
It's a fair question and sort of rings of that old military ad that used to be on TV, "I'm right out of school and where do I get the experience employers want - answer- Army Air force, Navy, Marines". :D The answer to your question is beyond my pay grade or interest level to some degree. Maybe prisoners, maybe practice in an HMO where no one has a choice for awhile, most likely a steady stream of patients who blindly follow the recommendation of their ENT to the first surgeon their sent to. I really don't know, but I'm pretty sure I wouldn't feel morally obligated to "take one for the team" and put my quality of life at risk just so I could give a surgeon inexperienced with AN surgery a "fighting chance".
I could take a handful of surgery patients from this forum who had the same surgeon and they would all have different outcomes - ranging from perfect to "lots of issues".
Absolutely agree with you, as I do on the vast majority of your posts. Open surgery is extremely "human" and subject to variability ranging to the surgeon having a good or bad day, fight with their spouse, problems with supplies, anesthesia, etc. One of the reasons I ultimately felt more comfortable with radiosurgery was the computerization and team oversight to minimize the variability in outcome.
Am I an excellent risk taker? I don't think so. I think I am just someone who believes in herself and her decision. I am also someone who is passionate about doing what I feel is best for me - regardless of what others may think
And I see myself in the same way , but chose a different path. In my view, you took a bigger risk with a "less" experienced surgeon than I would have been comfortable with ,but I respect the fact that in your considered perspective and personal criteria it was comfortable for you. Conversely, you could fairly say that I took a bigger risk than you would have being the 4th patient on the second generation of a machine just approved by the FDA in 2001. But I was comfortable with my doctors and my understanding of the odds associated with each option. Fair enough ;)
At the end of the day, I think my comments merely echoed the position of the ANA web site which urges patients to seek out clinicians who are very experienced in AN treatment.
Mark
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I just have to throw in that I PERSONALLY think that ole GUT thing is still a good indicator (of course, I believe that the "gut" is inspired, but that is another topic) -- I would rather have a Dr. who is semi-experience and has a WONDERFUL bedside manner and really listens to me and cares about me than the supposedly BEST DR. IN THE WORLD who doesn't give a fig about me or even really know anything about me or my case - just that I am AN#1892...just my opinion... ;)
K
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I think there's something to be said for being close to home. For me, Georgetown is 10 minutes from my home, which means that my wife can at least go home every night and be with the dog & cat after the long, stressful day of surgery, and all those post-op days, and though my brothers, sisters, and parents live 60-90 minutes away, they too can be close to home and not have the added stress of traveling to visit, staying in some strange hotel room, etc. Just something else I was considering.
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So sorry to hear aboutr your situation. I am approaching the big 3-0 next month, I had a 2.2cm AN, rasiosurgery was an option for me, but my docs pushed for surgery because of my age and location (pushing into brainstem), so I had mine removed via translab May 15th, they did have to leave a bit behind on my facial nerve as my AN has grown into my facial nerve. I had a wonderful outcome. Yes, my hearing on the AN side is gone, but I have found SSD not to be that bad. Of course that's jsut my personal experience with it. I have had no facial paralysis or trouble. My recovery was fairly smooth and I had wonderful docs. Because they left a bit behind I will be opting most likely for GK later this fall to "zap" the rest of the tumor. Best of luck to you in your decision. I saw many docs before I made my decision. I am from Ohio (toledo) and AN's aren't something they see here very often. But I did end up with a wonderful doc who I absolutley love, that's what was most important to me. I was confident in my doc and went into surgery actually feeling very calm. Best of luck to you in your decision.
Melissa
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Mark -
I totally forgot that old military ad, but now that you mention it, I remember it vividly :D
And as far as your pay grade, are you making more than the moderators? Just wondering . . .
Thanks for the thoughtful response, as always. While we don't always agree, we don't always disagree either and I really enjoy reading things from your perspective. You are more into the "medical" stuff and "whys" of things than I am, and it's nice to see your "take" on things :) I sometimes fly by the seat of my pants, but it works for me ;)
K -
I agree with your last post 100% ;D While I wouldn't call my doc "semi-experienced", I don't think he eats, sleeps, and breathes ANs either. He was the "guy" for me and many others and at the end of the day that's what's important to me. I'm confident he'll be the "guy" for many other AN patients and it's kind of irrelevant to me whether he gains "best of class" status or not :)
pswift -
IMO, and I have a lot of those as you can tell ;) , being close to home is something to consider when choosing surgery. The hospital where I was treated was roughly 40 minutes from my home which helped a lot since my parents & sister were in charge of my children, but also wanted to be at the hospital for me. I think it's also nice to be close in case for some reason you have to return there after being released - which is something none of us want, but does happen.
I know that others have traveled to other states for their surgery and say it's a non-issue, but it wouldn't have worked for me.
Jan
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Hi,
I am sorry to hear about your diagnose.
I know I am writing with some delay - sorry for that - I just read the message and wanted to share with you my experience.
I have already had two retrosigmoid surgeries but these were only partially removals. My AN was huge and here in my county - Bulgaria, Europe- they just took as much as they could and recommended me have radiotherapy. Now I have an AN as big as yours left.
I want to get rid of this as you say "meatball" andI am looking for really good and experienced in ANs doctors. I talked to Drs in House Ear Institute, LA, USA and with ones in Hannover, Germany. They both recommended to me have another microsurgery because the tumor is big and presses the brainstem. It will be likely to have some healthy cells get irradiated. And since i am young and radiosurgery does not take the tumor out of my head, they all consider having a third microsurgery a better chioice.
It scares me a lot, I know what the most plausible outcomes are and I am trying to get used to the idea. I am afraid of the facial paralysis but I must be strong enough to face it!!!
You must be strong enough to face any choice you make and be absolutely sure about it.
My suggestion is ask for a number of opinions and just decide what you feel most comfortable with. You have already found a very good place to start your research.
Good luck and post updates!
Best wishes,
Hrissy