ANA Discussion Forum
General Category => AN Issues => Topic started by: SusanT on February 17, 2007, 09:03:35 pm
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I was just diagnosed with AN in February. My ENT specialist/neurosurgeon has recommended the translab approach due to my "unserviceable" hearing on the AN side. My AN is about 2cm. I have daily headaches varying in severity from noticeable to unbearable. I have scheduled the surgery for May (I work in the school district here and would have the summer off for recovery). I am really quite unsure about which surgical approach is best for me. Translab sounds like the one that would have the fewest complications but should I try to salvage what hearing I have left by going retrosigmoid? Has anyone out there had surgery at the Medical College of Georgia? Any advice would be appreciated.
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Welcome to our group. Sorry you are here, but you'll find the people here are great, and have a tremendous amont of information and support.
3 weks ago I had the translab. procedure done at Emory University in Atlanta under the care of Dr. Doug Mattox and Dr. Jeffery Olson. I know I am one of the "lucky" ones, but I have had no complications since I got out of surgery. I am back to work (I do work at home and that is easier) I have started driving some (no hwy yet) and have had no headaches since I got home. I had 70% hearing loss when I was diagnosed, so I didn't really lose much with the translab. approach.
Did you team of DR's offer any other methods of treatment? When I 1st met with Dr. Mattox, he spent a geat deal of time offering up 3 different approaches. Wait and see, Radiosurgery, and Microsurgery. I'd be interested in hearing if yours only offered up the surgery route. If you need (or want) a second opinion on your situation, I would say you can't go wrong by making the trip up to Atlanta.
Whatever you choose, we're here to support and help you . If you'd like, email me (see my profile for address) and we can talk more.
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IF YOUR HEARING IS NOT WORTH SAVING(TESTS WL TELL) tHAN YOU ARE BETTER OFF W/ THE SIMPLER TRANSLAB, WHICH IS SHORTER AND LESS RISKY TO FACIAL NERVE DAMAGE.. i WAS BACK AT WORK IN MY MEDICAL OFFICE 2 WEEKS AFTER TRASNSLAB FOR A SMALL TUMOR.REMEMBER CHOOSE ONLY DRS AND TEAMS WITH LOTS OF EXPERIENCE, AS COMPLICATIONS IN INEXPERIENCED HANDS COULD BE A NIGHTMARE INSTEAD OF THE EXCELENT RESULTS FROM EXPERIRNCED TEAMS.
GOOD LUCK!!!
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Susan
I had a 1.0 cm X .7 cm X .3 cm AN
First Opinion: My hearing was not worth saving per audiogram and translab was recomended.
Second Opinion: My hearing was still pretty good per audiogram and Retro sigmoid was suggested.
In my opinion audiograms are if'y on the science.
My personal feeling was that I was happy with the hearing I still had (about 70% good)
I had retro sigmoid with a very experience team on Jan 17, 07
Follow up audiogram showed no further loss of hearing.
I go back to work on Feb 20, 07 to an industrial environment at a power plant.
I wish you the best and will pray for you.
Richard
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Thanks for the info...Richard-I agree about the audigrams. For example, I can use a sound amp device during a church worship service and I can hear in my "unserviceable" AN ear. I'm glad to know that things are going well for you. Keep those prayers coming my way.
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Hi Susan and welcome to the forum:
I had translab three years ago this May. I chose translab for the same reasons. I was told no usable hearing etc... Can you still tell where sound is comming from? I knew I would be deaf in my left ear. What I did not know is that I would not be able to locate sounds. That is what bothers me most about single sided deafness, especially at work.
Had I known that, I might have decided on a different approach to try and save what hearing I had. Might have......????
Good luck to you, Kathy
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Susan if you can hear with assisted listening devices then why go translab? SSD is a lot harder to deal with that one might imagine. Especially in the classroom. I used to teach but since my treatment am having to pick a new career. Unf. I had damage in my trigeminal nerve which has left me a speech problem so the doctors won't let me return to teaching.
You mentioned headaches and know quite a few of us were told AN's don't cause headaches.. BUNK! Once I chose my surgeon I was put on decadron and was headache free before surgery. I had had a constant migraine for almost a year. You might want to ask about that to get some relief.
I opted for retro due to the size and placement of my tumor( it was my only choice) I wanted to ability to try to preserve my hearing nerve in case new technology happened down the road which would enable me to hear again.
All my best to you!
Michelle
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I know this is probably a scary time for you but be comforted that the AN is still relatively small. My AN was the same size and I had a translab in Dec. 06. I was able to return to normal activities in six weeks even after two complications. I think the TL is the "safer" choice. No brain retraction. My scar behind my ear is almost completely healed after 2 months. You are doing the right thing by coming to this site to get the real deal on what is going on with your health. You will find out with your research that no one can tell you exactly what is going to happen because each one of our cases and bodies are different. You may just come out with flying colors and be good as new, minus hearing, or you may have all of the complications that you read about. Just meet this head on and look into your mind's eye and see yourself recovering and getting better and it will happen! :)
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Hi Susan,
Another Susan chiming in. I had Gamma Knife on my 2 cm AN last April 18th. I don't have much hearing in my left ear....I cannot hear anything on the phone, for example, and I have zero word recognition...I was never given a percentage of hearing loss, but as of last summer I was in the "severe" hearing loss catagory, rather than the "profound" hearing loss that my audiologist said many AN'ers were in. It wouldn't surprise me, however if I tested in that catagory now. My doctor is a neurosurgeon, and also does radiosurgery, so he advised me to go that route. Sad to say that some neurosurgeons will pooh-pooh radiosurgery, because frankly they lose income by refering you to somebody else. It's a nice idea, if you can, to talk to experts in both fields.
I wish you all the best from one Susan to another...
Sue in Vancouver USA
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Susan:
Hi, and welcome to the discussion forum. :)
I had the retrosigmoid approach AN surgery last year (as my signature shows) and it went very well. However, my hearing was already lost in the AN-affected ear due to long-term nerve damage. My neurosurgeon decided to use the retrosigmoid approach simply to gain better access to the tumor. I had no headaches before or after the surgery. However, I was under the care of a very experienced surgeon and his operating room team were all AN 'pros'. Although my surgery was performed in a teaching hospital, no hospital residents or interns came anywhere near me during surgery, as my surgeon said this operation was no place for 'amateurs'. I agreed. I assume they did have an opportunity to observe at least a part the almost 9-hour procedure.
With a 2 cm tumor, you're a possible candidate for radiation treatment as an alternative to microsurgery. Unless you are personally opposed to radiation treatment, I would suggest you do some research on that procedure. This site has such information, if you need it.
I wish you well and hope your headaches can be controlled or eliminated, soon.
Jim
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Hi Susan:
I had a 2cm AN removed retrosigmoid;
ended up with right sided facial paralysis.
My facial nerve was dead as soon as they hooked up the nerve monitor,
never came back.
It was a fluke, I am going for routine facial EMG's.
This doesn't happen to everyone (thank God),
but there is another option at the size your tumor is (radiation).
Look into your options, thoughts about surgical removal vs. radiation.
Wishing you all the best on your journey, Nancy
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Susan, unserviceable hearing might still be better than deaf. Deaf in one ear means one can no longer know where sound is coming from. A small amount of hearing in one ear adds summation to the total volume and some pitches. If a treatment other than Translab seems safe, ask your doctor why you wouldn't want to salvage some hearing in that AN side.
Before Translab I had 35% hearing in my AN side. I miss that "poor" 35% now. I use a TransEar now for my deaf side but I still don't know location like a stereo hearing person.
As I posted one time earlier. Some hearing is better than no hearing.
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I was just diagnosed with AN in February. My ENT specialist/neurosurgeon has recommended the translab approach due to my "unserviceable" hearing on the AN side. My AN is about 2cm. I have daily headaches varying in severity from noticeable to unbearable. I have scheduled the surgery for May (I work in the school district here and would have the summer off for recovery). I am really quite unsure about which surgical approach is best for me. Translab sounds like the one that would have the fewest complications but should I try to salvage what hearing I have left by going retrosigmoid? Has anyone out there had surgery at the Medical College of Georgia? Any advice would be appreciated.
hi susan,
my name is tony, i had a large tumor removed 1/23/07 by the translab procedure. i did have complications during the procedure, however, those complications were most likely a result of the size and nature of the mass i had in there. my point is.....i felt like the translab approach was the best option i had, since my hearing loss was severe, as well as the fact that it seems to give the surgeons "more room to work?", hearing is important, but being tumor free is better. good luck and god bless.
tony
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YIKES Tony a 6.5CM tumor! Ok, I'm so impressed with your recovery! I only had a measly 2.5Cm and it took me 3 months to find my comptuer and my first few emails were garbly gook that no one could read but me in my mind :o) Glad to see your posting so soon after such a big tumor. Keep it up!
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battyprincess,
thanks, i guess i am lucky. like jim scott said though, these things are tricky, i feel as though a lot of people who had smaller tumors are dealing with more than i am. recovery depends a lot upon the patient. i am only35, and i was in really good health going in to the surgery, so that has probably helped me. not to mention i am very stubborn, i refuse to let this "situation" get the best of me.
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I really appreciate all of the support and advice that I have received. I have been on an emotional roller coaster. I haven't been able to reply to any of you because the one symptom that I have not had decided to rear it's ugly head this week.....VERTIGO. My computer screen took on a life of its own. It appeared to be a constant "wave". Needless to say, I haven't been using the computer. It's better now. I am sending a copy of my MRI to Dr. Brackmann at the House Clinic. Several of you mentioned the idea of not being able to locate sound after the translab approach. I had never thought of that. I have emailed my neurosurgeon and asked him about which approach he recommends. He responded that the retrosigmoid approach gave a smaller chance of complete resection of the tumor. My MRI report states that the AN has both intracanalicular and extra canalicular components. What does that mean ? Any ideas on the complete resection ?
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My MRI report states that the AN has both intracanalicular and extra canalicular components. What does that mean ? Any ideas on the complete resection ?
"intracanalicular" means it's in the inner ear canal, and "extracanalicular" means outside the inner ear canal. Basically, your AN is partially in the ear canal, and also extending outside the ear canal towards the brain. Very typical growth pattern for ANs.
As for the surgical approach vs. hearing loss... My understanding is that the translab approach gives the surgeons the best visualization of the facial nerve, though it does sacrifice the hearing and vestibular nerves. This is the approach I took, because the hearing in my AN ear was pretty much gone pre-op (12% word recognition) and my main concern was preserving my facial nerve (which had no problems pre-op). If you have usable hearing in your AN side, talk with the surgeons about the trade-offs for trying to preserve that. It may mean that some of the tumor has to be left behind, but that could always be zapped with radiation down the line if it starts growing again. You also have the option of radiation for treatment now, and perhaps saving your hearing.
I do sometimes have trouble locating the direction of a sound, but that would be true for me no matter what treatment option I chose given the state of my hearing from the beginning.
Katie
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Susan,
If I had to go the surgery route I would definitly lean toward House based on feedback from this forum and a friend of a friend that had their AN removed there. They couldn't say enough nice things about House.
I am meeting tomorrow with a Houston area neurosurgeon recommended by my ENT. I will use this meeting to get info and ask a bunch of questions. During the past couple of weeks since I was diagnosed I have read more and more about radiosurgery, especially Cyberknife. I am leaning toward it because of the size of my tumor, 1.6cm, and the fact that CK has the best chance of saving your hearing in the affected ear. I have profound hearing loss there but I can still hear out of it and can definitely use it to locate where the sounds are coming from. At this point I just don't want to deal with surgery if CK or even GK is a realistic alternative. I have sent my MRI's to Dr. Stephen Chang at Stanford University (where CK was invented....and hopefully perfected) and wait to hear from him. Here is a great website that may peak your interest in nonsurgerical approaches. http://www.cyberknifesupport.org/forum/
Please don't rush into surgery without looking at the alternatives. I just can't see doing surgery if there are other non-invasive approaches available. Do your research and you will do what is best for you. Good luck.
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Ahhh welcome to the land of AN'er and surgeons who love to slice and dice in very different ways only to confuse the patient more.... I had 3 surgical opinons prior to the fouth guy who recommended cyber knife (radiation therapy)...
First guy recommended translab to debulk the tumor, than radiation to kill of the rest of the bugger.
second guy recommeded translab for complete removal
Translab is prefered as it doesn't screw up facial nerve as much.
Third guy recommened retrosigmoid as he wanted to preserve my hearing albiet only 5-10 % chance of that.
Fourth guy was my savior as I got to avoid the surgical knife and go for radiation.
My husband expressed frustation with the whole process- each surgeon was compelling as to "why their way was the highway to better health". Fourth guy explained that surgeons in 70's and 80's were only trained in surgical techniques- while surgeons in 90's were trained in both radiation and surgery. My advise- get someone who trained in both methods- they will give you an unbiased view..
I'm sorry you are having vertigo- that is really difficult to deal with. Good luck and read as much on this website as you can- it is a wealth of information. Take care, Annie
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Thanks so much Annie for the info. So far, 2 docs have recommended the translab. I'm getting the 3rd opinion in April. Radiation has been discouraged due to my age (41) ?!? There are days that I can't even think about it because I get so emotional :'( I am quickly (and sadly) learning that this whole process is such a "business". Ready to slice and dice and collect that money. It is really discouraging at times. The vertigo has stopped for now. I've slowed down and started resting...I'll keep you posted.
Susan
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HI Susan and welcome.
I'm really rather surprised that the dr's shunned you from radiosurgery due to age. Last year, at the age of (gasp!) 46, I had cyberknife and now, 11 mos post treatment, I am doing fine. I have the same hearing I had at time of treatment, I'm working, functioning and feeling fine. I believe that many dr's will try to steer patients away from radiotreatment, regardless of age, due to lack of knowledge of what the radiotreatment options available and how they work.
A great site for radio-reference is http://www.cyberknifesupport.org/forum/ where all the dr's that volunteer their time, can answer questions about all forms of AN treatments. May be worth a peek.
As we all know here, the decision is a highly personal choice.... and my hope is that you research all options available to you and make the decision that is best for you. As you can see, we all cheer you on, regardless of your decision, as we just want you (and everyone here) well.
Again, welcome!
Phyl
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The decision between surgery and radiation is certainly a personal one. Obviously a surgeon will promote surgery...that's what he does. At 44 I chose trans lab surgery. 73% of my hearing was gone and I have a family history of bone marrow cancers. So I didn't want radiation to spur anything along. I will say though, if I had a reacurrance, I would look very hard at radiation.
It has always been my opinion that if you have a tumor and it's operable to just get it the hell out. That's what I did.
You'll also find many people on this forum that are very happy with the results of their radiosurgery. Get all of the information that you can on all of the various procedures...both good and bad. You'll eventually come to a decision that you are comfortable with.
God bless,
Dan
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Hi Susan:
I had a rather large AN tumor (see my signature for details) and my neurosurgeon recommended surgical de-bulking and radiation (FSR) as the tumor was too large for radiation, alone. That seemed reasonable and I went with that plan. It worked out just fine. I underwent the retrosigmoid surgery - not to save my hearing, as it was already lost - but so the surgeon could have a better approach to the tumor site. He removed about half of the tumor, carefully avoiding any facial nerves in the process. I recovered quickly from the surgery with no real complications. The radiation treatments were tedious but painless and without incident, although I believe I may now have some tumor swelling, which is annoying but normal, following radiation. Other than that, I'm pretty much back to normal and have been for months.
I was 63 and in otherwise good health at the time I underwent both the surgery and the radiation, so don't let the doctors use your age (41!) as an excuse (and a poor one, at that) not to perform non-invasive radiation on your AN. Remember, it's your choice, not theirs.
I wish you all the best as you work toward a decision and trust that this forum has been of some help to you. We try. :)
Jim
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Hey Girl: the doctors said the exact same thing too me! I'm 44 and #4 said it was precisely because I was young that I should have radiation- go figure. Either way you will make the right desicion for you. Take care, Annie
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Annie,
I am taking the advice of many and cheching into radiation. The neuro doc that I have already seen does gamma knife. I'm also checking into Cyberknife. I feel as if I'm starting over...Back on the emotional roller coaster...I would really like to keep up with your progress and how your treatment has helped. I've started reading more about Cyber knife.
Another thing that we have in common is the Arnold "TUMAH" thing. How funny !
Take Care and let me know how you are doing.
Susan :-\
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Hey SusanT: hope this finds you in relatively good spirits and health. ::) You are right, it is an emotional rollercoaster ride.. I didn't realize how exhausted I was- trying hard to be stoic for everyone else, trying to be realistic yet optimistic, keeping family and friends updated...the only good thing is that these are benign. Post CK one month, I feel just fine ( but then i was fine before I found out I had this stupid bugger)- I'm embarrassed but I haven't had the side effects that most eveyone else seems to have: balance, high pitched humming...I do have low pitch humming ( but more like I've had too much aspirin). Yep, will keep you and everyone else updated as I progress too- but for now, I go back in August for my first MRI... take care, or as our govenor former actor would say "Hasta la Vista BABY) - too bad I can't get him to terminate this tuma...
Annie
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Hi Susan,
I was diagnosed 12/19/06 and had retrosigmoid at House in LA on 2/16/07. Going into surgery I had 30% hearing loss on AN side and have no hearing now. The doctors did say the nerve looked good during surgery and that it is possible that my hearing will return in that ear. Will just have to wait and see. The doctors assured me that they did get all of the tumor which was precisely why I chose surgery over radiation. It is all up to the individual though and there are no guarantees whatever treatment you choose. Keep reading and do your research. There is a lot of good advice on this discussion board.
Jean
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I have been reading some of the Newbie recent posts. I was just diagnosed on Thursday with a right sided AN, 1.5 x 1 (I am meeting with my doc today to get more specifics). Although I have been told I have some hearing loss, I do not feel it, so the treatment choice will be key. Obviously I want to keep my hearing, but more importantly, I want the safest choice for my health, even if it means losing my hearing on my right side. I am 53, and from what I am reading surgery will probably be recommended. The choice is a different story. I am from NYC and will be going to see the well known docs here, and then maybe email or send my MRI's to the House Clinic. So, if anyone has any more thoughts (I thank those who have already replied) I would appreciate them, and certainly I will continue to post on any new information I obtain on my road to deciding what treatment to select.
Thanks.
Evan
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Evan,
I was diagnosed in Feb 07. I spent most of February only researching the surgery options. I sent my MRI to the House clinic and got Dr. Brackmann's opinion. (He actually called me-that shocked me because it sometimes takes several days for my ENT to return a phone call ). My neurosurgeon does both Gamma Knife and the traditional surgeries. Yesterday when I talked to him, he told me to take a "deep breath" (I tend to get a little anxious) and research Gamma knife. I just can't get a sense of peace about the surgeries. I expained to him that I want to go the least invasive way first and then if I have to have surgery later then so be it. Needless to say, the past month has been stressful and with my Type A+++ personality-WOW. I find myself avoiding people because everybody wants to know what I have decided. I know they mean well, but I get over stimulated with a lot of "activity". I really can't give you advice "from experience" yet. My neuro doc said it best...."Take a deep breath"...
God Bless,
Susan T.
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Evan, At age 53 you are a candidate for either route of treatment, surgery or radiation. Please don't let the age be the issue for your choice. You might have other health issues that would bring a doctor to the conclusion that you need surgery, but do your research and ask lots of probative questions. I think you will find statistics that support a treatment path that sometimes preserves hearing. If your hearing is not so bad, you might consider trying to save it. Your tumor is not large. You have time to decide what is best.