ANA Discussion Forum
General Category => Inquiries => Topic started by: JFT on April 19, 2008, 09:46:55 am
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Yesterday I was informed that I have AN "I think" a 2.2 cm tumor in my right ear...medimum to large as the doctor said. My wife and I are starting down this new path of recovery as you can tell. ??? From what I'm told I have a 100% chance of losing my hearing in my right ear. Ok that was the first blow... Then I'm told that I have a chance of losing my facial nerve on that side as well. Anyway I am interest in seeing if anyone can give me some information about the % that happening. Also any advice in regards to who I should see. I live in Michigan and started with Uof M's Dr. El-Kashlan He has suggested The Translabyrinthine Approach.
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Hey JFT - I just responded to your posting under "Anyone out there from Michigan." You can expect a lot of people to respond to you. This is a great website with great people. Good luck to you.
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Hello JFT~
Greetings form Texas! Obviously I am not in your area so I can't help you there, but I wanted to welcome you here -- sorry you are now part of our little group b/c of the AN, but it is a good one! I can't give you exact percentages but I can tell you that there have been LOTS of advances since I had my surgery 12 years ago. I would love to help you &/or your wife in any way -- if you would like to PM (on left of screen) me & give me your phone number, I'd be glad to talk to y'all. Also, I have a blog (address at bottom in my signature line) so you can see what my life is like 12 years out. I have a SUPER life!! I won't lie to you, I have had a few "obstacles" over the years (& am kind of in one right now) but that is ME not YOU -- every AN is very different!
Good luck in your search -- let me know if I can help!
K
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JFT -
yes, with ANs there is a chance that you will lose your hearing and/or have facial nerve damage. Your inner ear contains not only your hearing nerve, but your facial and balance nerves as well. Losing 100% of your hearing is a given during Translab surgery, due to the approach because the docs open the inner ear. If you have some hearing, having retrosigmoid or mid fossa surgery might help you keep what hearing you have left.
I don't recall the exact percentages of facial nerve damage or loss of hearing, my doc gave them to me prior to my surgery, but that was almost 1 year ago.
Everyone's experience is different and a lot depends on the size and location of your AN, plus what the docs find when they go to remove the tumor. In my case, we had hoped to save my hearing, but my AN had grown and wrapped itself around my hearing nerve. In order to remove the entire AN, my hearing nerve was damaged leaving me SSD (single-side deaf). My facial nerve, however, was not damaged.
If you do end up completely deaf in your AN ear, there are options to help you hear again - specifically the BAHA and the TransEar. They won't enable you to hear exactly the way you used to, but they do help a lot.
Given the size of your AN, radiation (cyberknife aka CK or gamma knife aka GK) might be a possible treatment option for you. You might want to look into that and/or read some of the posts on this forum. In addition, if you haven't already, you should contact the ANA about brochures that explain ANs and their treatment. I found these materials invaluable.
Good luck in your AN journey. We're all here to help you, so feel free to ask us anything.
Jan
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Hi JFT
Welcome aboard. Sorry you had to find your way hear under the circumstances, but I'm glad you did. You've found a great new family of friends.
I'm somewhat of a newbie -- diagnosed in September, Translab in December 2007. My AN was smaller than yours -- I had decisions to make. I was already deaf in my AN ear -- that really wasn't an issue. The balance nerve in the opposite ear compensates eventually (it's taking it's time). And I believe I was told that the facial nerve issue was a 5% thing based on the poisiton of the tumor. I opted for a translab as opposed to radiation for one reason -- I was almost 60, I knew I would be dealing with other health issues as I got older, and I didn't want the possibility of a recurring brain tumor to be one of them.
As it turns out, the tumor had attached itself to the facial nerve and it was stretched during the operation. I have had facial paralysis until several weeks ago when I started getting some movement back. Nerves take their own time. Had I do it again, I would have followed the same procedure -- I just would have altered my expectations and my recovery situation.
My guess is that you will lose your hearing in one ear. From someone who has been Single-Sided Deaf for 23 years, it's not the end of the world -- it just takes some adjustment and protection of your good ear. Your balance will be messed up for a while -- it's sort of like being drunk without the happy part. And as most of the people on this board will tell you, unless the facial nerve is cut (Kaybo, Nancyann), the nerves do come back and you will regain your face muscles.
Like Jan, if you want to write to me, feel free. I wish you the best in the next few weeks.
David
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Hi, JFT:
Welcome to the forums we all wish we didn't 'qualify' for. I live in Connecticut and cannot offer any direction as to doctors in Michigan that treat an acoustic neuroma, but if you ever become desperate, I do know a great neurosurgeon in New Haven. ;)
With an acoustic neuroma, unilateral hearing loss is common as the nerve that transmits sound to your brain is inevitably compromised and with some surgical approaches, the hearing nerve is severed. Facial nerves are also in jeopardy but can be spared depending on the exact location of the AN, and no AN grows exactly the same way. The doctor you spoke with was giving you the worst-case scenarios but being bluntly realistic. However, you may well be a candidate for radiation which is non-invasive and quite effective but does carry some risks, of course. Your best course of action is to educate yourself (this site is a trove of AN information) and consult with more than one doctor who specializes in acoustic neuroma patients. Some doctors tend to be biased toward one form of treatment, be it radiation or surgery, and cannot give you an objective opinion on the treatment they happen not to favor.
The good news here is that you have a treatable tumor that is not malignant. You and your wife will get through this but you'll need her support as a partner in this journey. We're here to help in whatever way we can, so 'don't be a stranger'. :)
Jim
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Hey JFT:
I agree with Jim that your doctor was giving you the worst-case scenario.
I'll add a little here regarding the facial nerve issues. IF you choose surgery (and as you find out more you'll see that's a mighty big "if") you should be able to find a team of doctors who will use a facial nerve monitor during surgery - I know they do at MEI. In fact, Dr. Kartush from MEI holds the patent on one. That's doesn't mean that all facial nerve issues can be avoided, but it helps. Also, if the doctor you saw was making his prediction based solely on your MRI, you might want to get additional tests that can better pinpoint the placement of the tumor. That can help the doctors give you a more educated set of odds on hearing and facial nerve issues. Even then, all the doctors will tell you that they can't be certain what will happen until they actually see where the tumor is located during surgery.
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IF you choose surgery (and as you find out more you'll see that's a mighty big "if") you should be able to find a team of doctors who will use a facial nerve monitor during surgery - I know they do at MEI.
Curt -
not sure what you're saying about "' a mighty big if' ".
Patients choose surgery every day to treat ANs. I'm not saying that choosing radiation is wrong, but choosing surgery isn't wrong either. Treatment choice - if you are given one - is a very personal decision. The best thing to do is research the available options and the possible side-effects of each, and then decide with your doctor's input what is best for you. Another critical part of deciding on treatment , is to find a doctor or doctors with substantial AN experience.
Facial nerve monitoring during surgery is definitely very important. It's become the "norm" these days. I don't know of any experienced doctors who treat ANs surgically who don't monitor facial nerves.
Whether someone chooses radiation or surgery, it's important to note that those of us on this forum will support that decision.
Jan
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Hi JFT: I personally applaud your doc for giving you that info. I too had a 2.2cm AN. My doc told me there's a 5% chance of facial paralysis.
Well, I didn't think much about the 5% till I WAS the 5% that ended up with it.
My AN had eaten thru some bone in my ear - I'd had the thing in my head for many many years, & my facial nerve was a mess.
In hindsight, I do wonder at times if the paralysis would have occurred if I went the radiation route....
Just another subjective view is what I have to give you.
Good thoughts to you, Nancy
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JFT,
From reading your initial post, it is pretty apparent that your doctor consult solely revolved around a surgical approach. Others have addressed some of the points that you raised, but as you're new to the AN journey, I would encourage you to seek out a doctor who specializes in radiosurgery to put some balance in your perspective.
In terms of what you were told about surgical outcomes, they are fairly accurate given the size of your AN. Mine was essentially the same at 2 cm and I was given much the same information.
In surgery, there are three primary "routes" which others have noted in their posts
Translab - by definition it assures SSD since it destroys the inner ear mechanism. However, it does provide the best view of the facial nerve and at your size would give the best preservation outcome probably in the 85-95% range.
Middle Fossa - is not widely practiced and I have seen some very mixed results with it. It seems to be very successful in smaller AN's but I don't think it would a very common approach at 2.2 cm
Retro sig - What I was offered in my surgical consults since I had very usable hearing. It also has more facial nerve damage risk than the translab and I was given a hearing preservation chance of less than 20%, so in any of the surgical approaches it is fair to say that the probability of losing hearing is close to 100% at your size as you were told. The probability of facial nerve damage varies by the approach with Translab having the best chance and the others less.
Radiosurgery, on the other hand, is usually an option for anyone under 3 cm. Other than the non invasive aspect, the nerve function preservation outcomes between 1-3 cm tend to favor it. Radiosurgery results typically do not vary by size as is the case in surgical removal. for your size the possibility of facial nerve damage is less than 2% and preserving the hearing level you currently have is about 75% with a fractionated approach and 60-65% with a one dose treatment.
7 years removed from my Cyberknife treatment I have retained my 100% speech recognition level and the facial nerve continues to work at 100%. The tumor is roughly 25-30% smaller by volume as well which is a bonus given the goal is to stop it's growth only.
There are good and valid reasons to choose either surgery or radiosurgery for an AN of your size as others as noted. But there are differences in the probable outcomes based on studies. I'll attach links to 3 I recently posted as part of another board discussion which might be of help to you. Good luck in your decision
Mark
http://med.stanford.edu/profiles/frdActionServlet?choiceId=showPublication&pubid=66900&fid=4735
http://med.stanford.edu/profiles/frdActionServlet?choiceId=showPublication&pubid=40759&fid=3947
http://www.ucsf.edu/nreview/06.4-Oncology-HistologicalType/AcousticNeuroma.html
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Hi JFT,
Not your typical "take two aspirin, call me in the morning" diagnosis, is it? :D
As you can tell, we all have lots of opinions and points of view, as many have gone before you down this path. You will find more information and help here than you know what to do with. Step 1 for most people is to take a deep breath and settle down. It's just an AN, you will live to tell the tale.
As you do a little research, ask surgeons questions about surgery, and ask a radiation oncologist questions about radiation treatment. Asking a surgeon about radiation treatment is like asking a house painter if you should put up vinyl siding. If it surprises you that surgeons often only know "what they have heard" about radiation, then you haven't been around the practice of medicine much. I hope every AN patient gets the opportunity for a good consultation on both surgery and radiation options.
There are lots of resources here on good doctors and good centers for both surgery and radiation, and links to other websites where you can find out more. Take a little time, and make yourself at home, you are welcome here.
Steve
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JFT,
House Ear Clinic is world renown when it comes to surgery. The best part is that you get their expertise for "free" just by sending your MRI and report to them. The House Ear Clinic website has statistics relative to facial nerve preservation on it.
http://www.houseearclinic.com/acousticneuroma.htm
Here is the mailing info:
Send the MRI scans by express delivery (be sure that you are able to track the package) to:
House Ear Clinic
Attn: Acoustic Neuroma Website Consultations
2100 W. Third Street, 1st Floor
Los Angeles, CA 90057
You can expect to hear from a House Ear Clinic physician within 24 hours of our receipt of your information. You may also call or fax a House Ear Clinic physician at:
Telephone: (213) 483-9930
FAX: (213) 484-5900
This mail/telephone consultation is free of charge. (This offer does not apply to office consultations.)
Dr Kondziolka at UPMC will answer questions related to GAmma Knife.
University of Pittsburg Medical Center (Dr. Kondziolka and Dr. Lunsford) (UPMC is a well known radiosurgery center for ANs. They have published several peer-reviewed studies on the subject.) http://www.acousticneuroma.neurosurgery.pitt.edu/
Stanford Cyberknife Center (Dr Steven Chang) http://www.stanfordhospital.com/clinicsmedServices/COE/cyberknife/ckHome.html
CyberKnife support forum where you can send your questions to CyberKnife doctors.
http://www.cyberknifesupport.org/forum/
All the best,
Kate
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The other email was getting too lengthy, so this is my second post to you in a row:-)
What is your current hearing level? It may help you make a decision between surgery or radiation. For me, I had 100% hearing going into a treatment. But my tumor was under 2 cm. For me personally, I had surgery since it was under 2cm. If it had been between 2 cm and 3 cm, I would have gone the radiation route. Different things become influential factors as you make a decision.
Here is a guide through the decision making process that you may find to be a useful tool.
http://anausa.org/forum/index.php?topic=5786.msg53229#msg53229
Again welcome and you have lots to begin your research with to make an informed decision.
Kate
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As you do a little research, ask surgeons questions about surgery, and ask a radiation oncologist questions about radiation treatment. Asking a surgeon about radiation treatment is like asking a house painter if you should put up vinyl siding.
I just wanted to add a little to Steve's post.
My doctor is a neurotologist who routinely treats ANs with both radiation and surgery; his medical partner does the same. They work with a neurosurgeon for surgeries and a radiation oncologist for gamma knife (radiation). So when I consulted with my doctor, he was able to tell me the pros and cons of each procedure as well as the statistics related to the side effects of each. As his patient, I truly had the best of both worlds. I don't know how many doctors who treat ANs do both radiation and surgery, but I wanted to point out that I know at least two who do.
Jan
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Hi JFT,
I also wanted to offer you a quick welcome to the forum. I think what we would like you to know is that we all support you in whatever decision YOU make that is best for YOUR circumstances and what feels the best to YOU. However, we also want you to understand that often times you have a couple of solutions open to you and that, sorry to say, YOU have to kind of find out about these for yourself. It doesn't seem like it should be that way, but sometimes it is. There have been instances where people have regretted their decision because they didn't realize that they had other options. And there have been a few people who have had not so great results because their doctors weren't as expert in their treatment as they should have been. So, for your peace of mind, find out as much as you can about these different procedures, and make sure your doctors are experienced and have many, many surgeries/radiosurgeries under their belt.
Your AN size is a little bit bigger than mine. My doctor recommended Gamma Knife for me and I was okay with that. I do have facial nerve involvement somehow in my AN because I do have facial numbness on the AN side, but I do not have paralysis. My hearing went quickly before the treatment, so there wasn't much hearing to save. Yesterday was the 2 year anniversary of my GK treatment, and my AN has not shown any signs of growing. I still have the symptoms of AN, as most of us do. I have hearing loss, tinnitus, the facial numbness, some vestibular problems, minor dizziness at times, all of which are mostly manageable and vastly annoying. I do not have headaches (other than the regular kind!), and for that I am very thankful.
Best of luck to you with your eventual treatment and recovery. I am sorry that you are joining us on this AN journey, but we do welcome your company. We've all been in the exact spot you are in right now, and we remember the feelings well. Suddenly the rug gets pulled out beneath you and you have some crazy thing that you've never even heard of before and you're just kind of saying...whaaaaat? At least I sure was! :D
Take care,
Sue in Vancouver, USA
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I don't know how many doctors who treat ANs do both radiation and surgery, but I wanted to point out that I know at least two who do.
Jan
Just popping in to add that my neurosurgeon works closely with a radiation oncologist when treating AN patients. They respect each other's medical discipline and worked as a team on my AN case. The neurosurgeon used the retrosigmoid approach surgery and employed nerve monitoring (he flew in an out-of-town specialist). My 4.5 cm AN was 'debulked' (down to 2.5 cm). Then, he worked closely with the radiation oncologist to 'map' my FSR, using 'fresh' MRI and CT scans, The result was very satisfactory. A rapid recovery from the surgery (with no real complications), then, 3 months later, as previously scheduled, 26 FSR treatments (5 weeks) that caused me no side-effects or any real discomfort. Within a year, the AN has shrunk and shows signs of necrosis (cell death). Both doctor and patient are elated . :)
I highly recommend seeking a doctor that, even though he specializes in neurosurgery, is open to whatever is most efficacious for the patient. A fellow Connecticut resident with a small AN (that used to post on these boards) that I referred to my neurosurgeon, was impressed when my doctor looked at his MRI and, because he had a small AN, referred him to my radiation oncologist, even taking the trouble to personally escort this fellow down to the radiation oncologists office for an impromptu appointment. This is the kind of surgeon who really has the patients interest at heart and isn't fixated on performing his specialty on every AN patient that comes through his door. I consider myself blessed to have this kind of neurosurgeon. I wish every AN patient could find a doctor like him in their area. I'm sure many such doctors exist, but sometimes they're hard to find. I hope 'JFT" finds one.
Jim
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Hi JFT-
I'll pretty much ditto what others here have said. As you can see, I am scheduled from translab in less than 10 days. One of the things to ask your doctors is what THEIR statistic on facial nerve damage with translab is. This was a big concern for me, so one of the things I was looking for was the lowest statistic (my docs quoted about 2% risk, which was acceptable.)
I share your shock about losing the hearing. My first consult was via phone with House Ear Clinic in LA and when they told me I'd lose hearing in that ear it was quite a shock. Then each other doctor I spoke to validated that translab was still my best option given location of the tumor. However, I am at peace with that now (of course, feel free to check back with me in a couple of weeks on that! ;))
Give yourself time to digest each new bit of information, and ask questions, questions, and more questions.
Let us know how your journey progresses.
Debbi - counting down in NJ...
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I just wanted to add a little to Steve's post.
I don't know how many doctors who treat ANs do both radiation and surgery, but I wanted to point out that I know at least two who do.
Hi Jan, thanks for catching me on that. As a matter of fact, my own ENT does surgery, and recommended I look into radiation (see Jim's post for another example); and on top of that, I had my radiation treatment with Dr. Chang, who is a neurosurgeon himself, working with Dr. Gibbs and other radiation oncologists at Stanford. So you are right, there are some good ones out there, and some good teams.
I guess I was just reacting to another possible example of the "of course you must have surgery" view that does still come up fairly often. The balanced view of the options is the way to go.
So you can ask that house painter about new siding, as long as he knows something about siding, and knows a good siding guy. :)
Steve
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I am form the Toledo, OH area and have seen Doctors at U of M and at Cleveland Clinic and I have opted to go translab with Dr. Jack Kartush at the Michigan Ear Institute (Southfield, MI). I highly recommed him and his group. The all were wonderful when I went for my consult. He has many years experience and over 1000 surgeries. He helped create a tool used during surgery to help monitor the facial nerve to help prevent surgical damage to the facial nerve. He is a wonderful man.
http://www.michiganear.com/index_real.html
My AN is right sided, 1.6-1.8 cm depending on what doctor you talk to :) I have come to accept the SSD I will be left with. I only hope and pray everyday that everything facially stay "intact", I currently have some facial twitching and things, which is why I have decided on surgery sooner than later.......24 days and counting :)
Best of luck to you......
Melissa
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I just wanted to thank everyone for the feedback and encouragement about my situtation... I feel everything happens for a reason and I'm going to keep my chin up! ;D
I have a question... Is it normal to feel the pain in the neck, twitching in the face and all that kind of thing? now that I know what is going on?
JFT
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JFT -
I, too, believe everything happens for a reason.
As with most things AN, everyone is different. What is "normal" for some, might not be experienced by others. But my guess is that the pain in the neck and the twitching in the face are normal.
Hang in there,
Jan
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Hi JFT,
Check out the website MichiganEarInstitute.com
It's located in Farmington Hills, MI.
It's supposed to be the #2 place in the U.S., with #1 being the place in Calif.
I live in MI also, and at this place, it's all they do. They have 6 surgeons there.
I've been to U of M for rheumotolgy, and it's a great place.....but I think for something like this, I feel better going to Michigan Ear.
Hope I have helped you. My surgery is in June.
Lacey
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Lacey,
Congrats! Please PM me and let me know how you finagled gettign in to see Dr Laroue. I'm so happy for you. I bet you feel a weight has lifted......Congrats!
There seem to be quite a few of us Ohio/Michigan AN'ers becoming "posties"......we need to schedule a "postie" luncheon sometiem in the future! Ohio? Ohio Also? Are you game :)?
Melissa
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I am game for a luncheon. I am now driving so we could meet before your surgery, Daydreamer, If you would like. I am not available May 7,8, or 9th but open any other date. I am from the Stow, Akron, area..I do not think Ohio is driving yet. She is from Cincinnati...So we may want to wait. I am game for whatever!
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Melissa,
I'd love to have a get together at some point. I am not driving and not sure I'm close to yet. I'm at the mercy of my family and friends to transport me to my daily appts. Still seeing ophthalmology and only have one eye for now. I planned on having some "free" time, but the docs and vestibular rehab are eating my days away.
Let me know when and if you all have a get together and I can't make it, we'll have to have another one ;) Good excuse to keep scheduling them.
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Jan,
Those of us in Ohio and Michigan are thawing out from the winter and our ANs are springing up, thus the recent increase in Ohio and Michigan ANs. ;D
Okay, it sounded pretty good, but actually I was diagnosed last summer. Part of my decision not to have surgery over the winter months was because of the weather and ability to rehab/walk/go to appts. without breaking my neck on the snow/ice.
Our good neighbors to the north (northern Ohio and Michigan) know how to drive in the ice and snow. Cincinnatians can't drive in the rain. (No flames please, I'm a native Cincinnatian and invite anyone to visit during a nice spring rain to see what I mean.) It is pathetic. ::)
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Jan,
Those of us in Ohio and Michigan are thawing out from the winter and our ANs are springing up, thus the recent increase in Ohio and Michigan ANs. ;D
Well, if that's the case, one of these days we'll be adding more people from Illinois - that is, if the weather will ever cooperate ::)
Just had huge snow flurries on Monday afternoon, then today it got past 60 degrees. Go figure! Chicago weather - got to love it ;D
BTW, we can all drive in bad weather in Illinois - we get lots of experience!
Jan