Newly Diagnosed 30 years old, 3 cm meatball

[er]

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

[LADavid]

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

[fbarbera]

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 

[LMH]

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

[sgerrard]

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

[elderbirds]

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

[leapyrtwins]

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

[pswift00]

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?

[sabuck]

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!

[Jim Scott]

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

[Mark]

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

[pswift00]

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.

[leapyrtwins]

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

[Mark]

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   

Mark

[leapyrtwins]

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   

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