ANA Discussion Forum
General Category => AN Issues => Topic started by: Marine2340 on October 15, 2007, 09:43:30 am
-
I was diagnosed with my AN about three months ago, started out as a plugged sensation in my left ear and then the ringing started. I had a MRI and they found a 5mm x 5mm tumor. I have seen Dr. McElveen in Raleigh and he suggests the Trans-Lab surgery to fix this. I have a few questions i hope someone can answer for me:
Does anyone know or delt with this Dr?
I am an active duty Marine (19yrs), is there anyone out there that is active duty and dealt with this? Is this a career ending deal? I read a lot of these posts concerning post-op recovery and i am kinda concerned about what i will be able to get back to doing! I have a very rigorous PT schedule, I teach martial arts and really stay active. Is it going to be possible to get back to doing these things? I also love to deer hunt, archery only. Will that be possible later? Sorry to sound like i am rambling but my mind is driving me crazy with this... ???
-
Marine2340,
As far as Dr. McElveen's reputation, I can't really speak to that personally, but I can say I have never seen his name come up in this forum in the past six years, so I'm willing to bet he's not "recognized" as one of the prominent practioners of this surgery. Ultimately the best way to find out is to ask him how many of these surgeries he has done. If it's not at least in the 500 plus category, I would suggest you shop around.
My biggest concern with your post is that he is recommending the trans lab approach for a 5 mm AN. You indicate that you were diagnosed by virtue of an increase in tinnitus, but at that small size, I'm assuming that your hearing is still at a very usable level. To suggest an approach that would sacrifice hearing by definition for an AN that small seems irresponsible and absurd to me and makes me question his experience. In point of fact, you could reasonably take anyone of three approaches at this point.
1) Wait and watch - AN's are very slow growing benign growths (tumors). At such a small size, it would be very reasonable in my mind to schedule MRIs at 6 month intervals for a while to see if it's even growing or if you have any additional symptoms. If neither occurs then do nothing, if either occurs it would be prudent to move into one of the two treatment options
2) Surgery - at this small size, in the hands of a very talented / experienced surgeon such as those at the House Clinic in LA, Dr. Jackler at Stanford and a number of other folks across the country, the probability of a good hearing and facial nerve preservation outcome is pretty high. it is still a highly invasive procedure, but if you want it "out of your head" that is the way to go. I believe if you have usable hearing, a highly trained neurosurgeon would opt for the Middle Fossa approach, or even the retro sig over the translab. It would only be my bet, but McElveen's suggesting translab may be because that is what he was trained on and he doesn't have the other options in his "toolkit"
3) Radiosurgery - This is also a good option for you. Again at this size the outcomes are similar to surgery, but the procedure is not invasive. Important to consult with someone who actually has a lot of expereince and expertise with this option as well, or a doc who actively does both. It's very easy to get misinformation on this choice when you ask a surgeon who is biased to what they were trained on.
You have a number of options and at this size, I would think you would have a high probability of minimal post treatment deficit and impact on your quality of life and career going forward.
Take your time, understand your options would be my guidance at this point
Good luck
Mark
-
I guess i should have added a little more info...I have lost over 60% of my hearing and i have no verbal recognition in my left ear. I could not understand any words that were spoken during the test. I guess that was the biggest reason for that suggestion. I realize that it is very small now. Would it not be better to get it taken care of at this small stage. I have no other symptoms except from the occasional headaches right now. My thought process is to get it fixed before any thing else gets messed up. I also heard that going with the radiation has implications on future things such as life insurance/medical insurance and such. Has anyone heard of this?? Maybe i am jumping the gun on this issue, its funny...i have two tours in combat and this is the first time that i feel like i am backed in a corner with limited options!! >:(
-
Hello Marine--
Here's a website with a good amount of info on all types of treatment for ANs:
http://www.acousticneuroma.neurosurgery.pitt.edu/
I hadn't heard the story about life insurance etc. I don't know why it would be true. The failure rates for treatment of small ANs are similar (and very low) for both surgery and radiation.
I had radiation treatment for a 7mm AN in January, and have had no side effects since. I agree with all that Mark said--translab is the most widely taught technique, but it is often the only one that doctors who are not specialists in AN treatment know. You can get another opinion by sending your MRI to a major treatment center like Hopkins or Pittsburgh. Doctors will tend to favor what they do most and best--Pittsburgh will lean towards radiation, House will favor surgery.
Above all--DO NOT RUSH into anything. With an AN this small, you have plenty of time to learn about your options and make an informed decision. The normal growth rate for ANs is 1-2 mm a year, so if you took a year to research your options, your AN wouldn't be much different than it is now.
Good luck. Hope things turn out for you as well as they have (so far, anyway) for me.
Mac
-
I was diagnosed with my AN about three months ago, started out as a plugged sensation in my left ear and then the ringing started. I had a MRI and they found a 5mm x 5mm tumor. I have seen Dr. McElveen in Raleigh and he suggests the Trans-Lab surgery to fix this. I have a few questions i hope someone can answer for me:
Does anyone know or delt with this Dr?
I am an active duty Marine (19yrs), is there anyone out there that is active duty and dealt with this? Is this a career ending deal? I read a lot of these posts concerning post-op recovery and i am kinda concerned about what i will be able to get back to doing! I have a very rigorous PT schedule, I teach martial arts and really stay active. Is it going to be possible to get back to doing these things? I also love to deer hunt, archery only. Will that be possible later? Sorry to sound like i am rambling but my mind is driving me crazy with this... ???
Do you have any balance issues... with a trans-lab you lose ALL your hearing in that ear... and it sounds like you have lost most of it already .. thats why they are thinking a trans-lab even for the very small tumor.. Keep in mine that also cut the balance nerve in a trans lab .. so that would make this like balance beams and other track and field types excerises harder.
Hunting by sound will be hard.. with only one good ear you lose the ablity to locate where a sound comes from ... you might be seeing some of that now .... but if your in a tree stand thats not really an issue .. or with a friend or dog...
we have serval people that stay active on the site.. some with very large tumors.. runners (Crazycat) and kayakers (me) ...
-
Marine,
First of all, THANK YOU, for serving our country and giving so much of yourself.
If you have already lost sixty percent of your hearing in one ear, has it affected your balance? I had a 3.5 cm AN removed translab from an ear that I had perfect hearing and lousy balance. Now I have no hearing and still lousy balance, headaches and dizziness twenty-six months post op.
If I were wearing your combact boots I would definitely get a second and third opinion. I would be a wait and watcher. I would research and research and send my MRI's to House and get a consult at the very least. I know being military limits your ability to "shop" around, but you have a lot at stake here.
Good Luck and again thank you and God Bless,
Brendalu
-
Marine 2340:
Welcome - and, with all sincerity, thank you for your service to our country. Believe me, it is appreciated.
I cannot offer any information on Dr. John McElveen (positive or negative) based on personal experience as I don't live in your area, but a Google search showed his resume includes training at Stanford and the House Ear Clinic in California as well as being a founder of the Carolina Ear and Hearing Clinic (in 1993) and a consultant professor in Otolaryngology at Duke university. This is all quite impressive but the question remains as whether Dr. McElveen has the necessary extensive experience - specifically - in performing removal surgery on acoustic neuroma tumors. Unfortunately,(in regard to finding surgeons experienced in removing acoustic neuroma tumors) AN's are relatively rare. Most neurosurgeons don't see a lot so their experience is usually somewhat limited and that can - sometimes - result in a less than positive outcome for the patient.....in this case, you. Be cautious about any physician/surgeon with less than hundreds of AN surgeries 'under his belt' and especially if they urge you to have surgery, considering the small size of your tumor. The translabyrinth approach to remove AN tumors is fairly common but it does guarantee hearing loss in the AN-affected ear. This must be considered. Radiation is probably a viable option for you, too. Its non-invasive (no hospital stay, incisions, etc) and usually is effective on small tumors, such as yours. With the small size of your AN, 'Watch-and Wait' is also possible, but that approach requires yearly MRI scans to observe any growth in the tumor. Something to consider if the MRI is an ordeal for you, as it is for some folks. All of these options need to be discussed with a physician who can 'read' your MRI, your medical history and, one hopes, offer an informed medical opinion regarding your best course of action in addressing the AN.
With your hearing loss, the potential to lose all hearing in one ear and the often debilitating consequences of AN surgery, I would venture to speculate, as you put it, that this is very likely a career-ending deal for you. SSD (Single Sided Deafness) is a definite handicap - I speak from experience - but not really a 'disability'. However, as a member of the military, I believe that - post-op - you would be greatly compromised in performing your more vigorous duties, although a 'desk job' might be quite feasible if you simply needed to put in another year to qualify for retirement benefits. Bow hunting would likely be very difficult but not impossible.
I believe that being in good physical condition and motivated, with a skillful surgeon and operating team (as I had) you could undergo surgery and come out pretty well but nothing can ever be guaranteed, Radiation is also a distinct possibility you should look into. I have no information that tells me insurance (health or life) is difficult to obtain following radiation treatments, as those treatments are usually successful. I expect that your medical condition at the time you apply, not the treatment you once had, is the salient point in what insurance underwriting guidelines consider. A call to your (or almost any) state-licensed insurance agent should answer that question.
You do have options. I trust you'll use your Marine self-discipline, get calm and consider then carefully. The best option you have is time. Use it well.
Jim
-
Hi Marine2340!
Nice to meet you -
Can you still tell what direction sound is comming from? The very worst part of being deaf in the left for me is not being able to figure out where a sound is comming from.
Your AN is much too small to sacrifice your hearing with translab. Run from that surgeon.
Good luck and my best to you, Kathy
-
Hello marine2340,
I live in the Raleigh area and have met several people who have had their AN treated by Dr. McElveen. AN surgery is a team event, usually refered to as a skull base team, and I've usually heard Dr. Mcelveen (Neurotologist) mentioned along with Dr. Cunningham (Neurotolgist). I've also heard that Dr. McElveen is familar with the normal three surgical approaches to AN, chosing the appropriate one for the specific tumor being excised. Operating with Dr. Fukushima (Neurosurgeon), if the retro-sigmoid apporach is used. Dr. Fukushima has experience with thousands of AN surgeries, with an office in Raliegh, and travels around the world performing this type of surgery. And operating with Dr. Hitselberger, who is associated with the House Ear Clinic in LA, if the middle fossa approach is used.
Another skull base team to consider would be Doctors Tucci and Sampson at Duke, who also operate with Dr. Fukushima.
There is a local Acoustic Neuroma Asociation chapter in North Carolina, that usually meets in Durham. You could meet and talk with people who have been treated by all these teams, as well as people who chose radiosurgery for their AN treatmant, at the local meetings which are held every three months. Send me a private note with your email address, by clicking on one of the icons on the left side of the screen, and I'll send you the email address of the contact for the local ANA chapter.
Your AN is still in the smallish range so take your time to consider all your options, incluing radiosurgery and "watch & wait". If you want to consider gamma Knife radiosurgery, Dr Steiner, at UVA, is one of the pioneers with GammaKnife. Do your own research on your potential treatment team. Whether a doctor is mentioned on this forum site, or not, should only be a small part of the analysis, and in itself would not be a good measure of a doctor's experience or expertise.
Your AN is on the small side. so it would be less likely that you would have lasting vestibular (balance) issues after treatment that would prevent you from vigoruous outdoor activities. I only have one vestibular nerve and still play basketball. Last week someone posted that they had completed a long distance bike ride.
Sorry to hear about your AN diagnosis, but welcome to the Forum. Send me a private note if you would like to talk, and I'll send you a my phone number.
Regards,
Rob
-
hello marine2340,
I had my surgery @ Oregon Health & Science on March 28, 2005.
I am still having problems not as bad as they were at first. It does take time for healing. I just wish it was sooner.
I was able to go back to work in 3 weeks but a little at a time.
Every one is different , so good luck in your journey.
I was lucky, my husband is retired from the Navy 20 years so it made it easy for us.
Evelia
-
Semper Fi Marine,
I dont kow your age 'but I have heard that ANs grow
fast in young people.I am 41 and mine was 8cm but I dont know how long it
had been there ,and recovery was and still is rough.
Being a marine and the shape your probably in ,I would not be that worried
about recovery ,I know your tough as nails and probably around my age.
I'm kicking its _ _ _ daily , and I know you will to !
just dont wait to long to do it, and get a damn good DR.
improvise , overcome , adapt !
we are all behind you.
-
SATMAN, YOU HAVE WATCHED HEARTBREAK RIDGE TO MUCH. LOL
-
busted by rice522.
-
Forgive me butting in here - I may just be covering old ground etc
Post- Op is quite hard to predict- you may have very few
side effects but night time balance and/or difficulty locating sound
source/direction are not uncommon
I am not saying the military wont want you
- but you may be better suited to a more administrative
or instructor type role
My suggestion is you take a look at your strengths
and subjects that interest you - and look at the options
Worth keeping fit and well in the meantime (in moderation)
the better nick you are in - the quicker you will get well
Good luck with the OP !
Best Regards
Tony
-
Marine2340
Take a look at through the Membership list and search for Rob7. Send him a PM and see if he will respond. I think he just retired from the Army (had his surgery in the Feb-Mar 07 timeframe). His tumor was bigger than yours and he had a lot of complications, so his story might scare you. I haven't seem him post in awhile.
But remember, how each individual's surgery goes is not the same. I had surgery in May, and I feel pretty good. Some funny feelings every now and then, but nothing debilitating.
-
G'day Marine.
You've got some good advice from this forum so far. On your side you are young, extremely fit and will have the heart and guts that it takes to be a marine with active service experiance. You also have a very small tumor and time to play with before making a life changing decision. I would not rush into surgery. I recently had a 4cm AN removed. The ENT said it had probably been growing in my head for the past 20 years. Seeing as I first noticed hearing loss when I was an rifleman 20 years ago, he was probably right. I always assumed that lots of shooting with no hearing protection had affected the hearing in the right. Although I only served three years, I later joined the reserves a few years back despite failing the hearing test (the Aussie army is full of deaf senior NCO's anyway - thats why they're always yelling) and I was totally unaware of anything else wrong - it did'nt stop me from requalifying as a grunt at 35. It was only a year ago that my right ear went totally and I started to get other symptoms like vertigo and stuffiness in the ear. Three months go an MRI picked up the AN. I don't think that my surgery will in the long term affect my ability to do the things I used to do like surfing, diving, cross country and gym work unless I let it. Keep a positive attitude about it and you will see how your mates and your boss respect you for it and how easier it will be to deal with, also take the time to consider your options, you have a few because the AN is small and you've found it early.
Good luck with it all, compared with what you've already been through this should be a walk in the park.
-
Marine,
One question. Was that 19yrs service? Hope you did'nt take my joke about deaf senior NCO's personally!
Johno
-
Welcome, Marine, to the forum. I concur with everybody else's comments. It's the pitts having to deal with this stupid thing, but whatareyagonnado?
As to the size and your symptoms...it always amazes me how different we are. I didn't get the exact same symptoms as you have until my AN was 2 cm. I guess it depends on which teeny bit of nerve is being affected. Some people with small AN's have opted for microsurgery. And I acknowledge that you are concerned with stopping it before something else gets worse. There is that unknown factor of what is going to happen down the line that can cause major anxiety. Ten Hut, Major Anxiety here! Okay, bad military joke. ;) I would also recommend that you get a second opinion. One of our members just had a terrific result from a team in Tampa Bay, Florida. You can get free consults from House Ear Clinic, and even though they earned their reputation via microsurgery...they also do radiosurgery now. Also Dr. Chang at Stanford is highly regarded. At least you can get their opinion, even if you don't want to travel across the country. And you can visit this website: http://www.cyberknifesupport.org/ and you can ask questions of Doctors there about CyberKnife procedures etc. Click on Message Boards and then Brain to get you to the right place.
Our nephew is in the Marines and is stationed in Hawaii now. He is leaving this week to go to VietNam where he is helping in excavating a plane crash site from the Viet Nam War.
Good luck to you and I hope everything goes smoothly in your treatment and recovery.
Sue in Vancouver WA USA
-
Hi Marine, My father was a marine and died in the hospital on Paris Island. Will the military pay for your surgery anywhere you want to go? If they will then you need to go to an experienced center and not fool around with this. I read what Rob/ Headcase2 had to say and I think his information is significant and informed. Good Luck, Holly
-
hello again,
Have you decided?
nikynu is right, find one with lots of expierence.
good luck
eve
-
Well it has been quite awhile since I posted on here. But i finally made a decision to have CyberKnife done. I am going down to Jacksonville Fl next week to see Dr Allison Grow at memorial Hospital. Two days of pre-op and getting zapped for three days. I figure this is the best option based on all the research I have done and all the great responses that I have received from this board. I will let you know how it goes once i get back! ;D
-
Marine2340:
Well, it's been 9 months since I last posted a message to you but apparently you did use the time wisely and opted for radiosurgery. I congratulate you on your obvious diligence in choosing a treatment and of course, I join many others in wishing you a very successful CK treatment with no complications and a rapid, complete recovery.
Jim
-
Marine,Thanks for your service to this country! I am an avid bowhunter,had cyberknife 4mos.ago,a few issues,but Im'certainly the exception,and would make the same decision again.Post cyberknife not much is different still can't hear out of my ear,some balance issues etc.about the same as pre-cyberknife.But back to the important stuff Bowhunting! I use a climber,and have gone with a safety vest,I just do things slower and more deliberate.I also started hunting on the ground in brushpiles,this worked far better than I ever imagined,but is also much easier to get busted,butreally exciting when you have a deer 5-10 ft.from you! The worst part I find is when I hear the crunch,crunch ,of a deer coming behind me but have no ideawhat side its coming from,just makes it more challenging,and a bit frustrating at times.Truly for me the worst part is dragging the deer over uneven ground back to the truck,balance issues really come into play here,once again I just slow down and take my time.Good luck with cyberknife,nothing to it.And good luck bowhunting! Bruce