ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: Kim Zingale on October 26, 2008, 09:34:56 am
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Hello! I was diagnosed with a 1.5cm AN at the beginning of August. The only real symptom I have right now is ringing in my ear, but the ABR test showed that my hearing nerve is unresponsive. I'm 26 years old, so the doctors I've spoken with do not recommend watch & wait or radiation therapy. I am inclined to agree with them as there is a lot of time left in my future to wonder what's happening in there.
In terms of surgery, I've talked to my local doctors at Georgetown here in D.C., and I've had a phone consultation with Dr. Fayad at HEI. Dr Fayad recommends middle fossa if I want to try to preserve the hearing, although with the unresponsive hearing nerve, the chance for that isn't very high. I'm willing to go for Translab, but it's hard for me to reconcile the fact that I can hear fine now and I'm going to choose surgery that is going to make me deaf in that ear. The neurosurgeon at Georgetown spoke to me about retrosigmoid, but that was before we got the ABR test results, and Dr. Fayad said that wouldn't be a good option for me because it would leave a lot of tumor in the IAC.
I plan to find out more about having the surgery at HEI, but I'm a little wary of going across the country for it. I know I need to talk to the neurosurgeon at Georgetown again, but I'm not sure how to approach it. Do I tell him what the HEI doc said? I guess I'm looking for advice about talking to the doctors and getting all of the information that I need.
Thanks!
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Hi zinger1905,
Welcome to this forum! I live in New Jersey and had the translab procedure at House this past January. I was also a bit taken aback at the thought of travelling across the country for surgery, but quickly came to a high level of comfort with my decision. I flew back East 10 days after my surgery (there's a "guest center" adjacent to the hospital and House Clinic where you can stay both pre- and post-op) and experienced no problems whatsoever. I believe that 10 days is pretty standard, but rest assured that they won't release you until you're ready. All that being said, there are certainly some wonderful surgeons here on the East Coast -- at Georgetown, in New York, and elsewhere, so you should go where you feel most comfortable. And I would certainly tell the neurosurgeon at Georgetown that you've spoken with HEI -- I think he/she needs to know that you're doing your homework and seeking as much information as possible!
Be sure to read the various threads on this forum -- you'll gain a wealth of information from those who are going through/have gone through exactly what you're dealing with and it will hopefully be a great help. You can also order some informative booklets from this ANA website. I think everyone will agree that the more you learn about the AN journey, the better prepared you'll be to select your form of treatment and handle your post-treatment outcomes.
If you do eventually end up losing your hearing (you'll then be considered SSD -- Single-Sided Deaf), there are several ways of coping with it. On this forum you'll discover folks who've become used to the condition and can deal with it just fine, as well as others who've opted to go either the Trans-Ear or BAHA (a bone conduction sound processor) route. And I trust you'll find that the consensus of those of us who are SSD is that while it's not a wonderful condition, it's certainly not the end of the world nor the end of the ability to communicate efffectively in our lives.
Best wishes as you continue to gather information and reach the decision with which you're going to feel the most comfortable! Please keep posting and asking questions as you go.
Catherine (JerseyGirl2)
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Hi and welcome,
It sounds like you are well on the road to making good sound decisions. Just fyi, I had retrosigmoid and retained all of my hearing. I think it very much depends on where the tumor is located its size and shape. No worries, you'll come through just fine and will deal with whatever is thrown at you.
Be well,
Marci
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Hi and welcome.
IMO doctors are used to patients getting second (and sometimes more) opinions, so I don't think the doc @ Georgetown would be surprised to know you consulted with the doc @ HEI. We are talking brain surgery, so patients need to be informed and I think docs respect that.
As far as traveling, I didn't and I can't imagine it - but that's just me and my opinion. I found very capable doctors right here at home and in hindsight I wouldn't have changed a thing. If you find the doc @ Georgetown to be experienced and you like and trust him, I'd go with him. Make sure you do your research though. If you haven't already, you may want to contact the ANA about their informational brochures; they are very helpful.
As far as being SSD goes, there are options. I have a BAHA and I really like it. The surgery was simple, the recovery was fast, and others don't know I'm wearing a hearing aid since there is nothing inside my ear. It works well for me :)
Jan
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Zinger:
Welcome! I'm glad you found the website and forums and decided to post. I trust you'll make us a resource and use the site and forums to your best advantage.
Having an acoustic neuroma is no picnic but it's also not an insurmountable condition. At 1.5 cm, your AN is relatively small so you do have options. If radiation is off the table, choosing the type of surgery, surgeon and facility becomes a serious endeavor and one that requires doing lots of research, having a few doctor consults and of course, somber consideration and, for the religious, much prayer.
I trust you'll be doing all of this within the next few weeks. We're here to help and that help is based on our collective intelligence about every aspect of having an acoustic neuroma. We want to share what we've learned with you so please consider this website & the forums a resource, one that you'll be using on a regular basis. We look forward to seeing your future posts.
Jim
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Hi Zinger,
There are similar symptoms between our two tumors. I had 100% hearing going in with a tumor similar in size to yours. Mine was 1.5 cm. also.
I did have middle fossa surgery because statistically there was a better chance for hearing preservation. Like you, I wanted to give it my best shot to retain my hearing since it was intact before surgery. I was also prepared to lose it. I've retained 80% high frequency, 50% low frequency and had 84% speech discrimination. The speech discrimination score is important as sometimes hearing retained is not audible. Over the past seven years, my speech discrimination seems to be changing causing for some funny conversations with people.
The other thing I was told is that the symptoms like tinnutus that you have prior to surgery most likely stay. They may be reduced, but symptom may stay.
Regarding my surgery, I had it at St Vincents (hospital House uses) on November 29, 2001 with Dr.
Brackmann and Dr. Hitselberger. The staff there was very professional and
used to handling acoustic patients. As a matter of fact, House takes up the
whole sixth floor of St. Vincent's Hospital. I live in the Chicago area and had no problems travelling. I was told Airplane travel is recommended for any travel over three hours.
My surgery was 4-41/2 hours. You complete several tests the day before
surgery including a hearing test, a meeting with the surgeons, bloodwork
etc..
The day of surgery is interesting. They typically start the operations in
the late morning/early afternoon. You check into the hospital about 9 am and
you go to the sixth floor and wait in a private hospital room until surgery.
When it is time, you are wheeled down a corridor toward surgery. It seems
funny to remember this, but I remember the sunlight streaming in through all
of the windows. Then you are taken to a room where you meet with the
anesthesiologist. The doctor confirms the correct side of the AN and marks
your ear. I remember the anesthesiologist asking me what I was most afraid
of prior to surgery. I remember answering her and her reassuring me. Then
I was out and before you know it they are waking you up and asking you to
wrinkle your nose and smile. These are actually informal observations that
they use to determine your facial nerve outcome.
You are kept in ICU 24 hours and then discharged to your own room. All of
the rooms are individual (private) by design. The first 24 hours were the
hardest for me because I was dizzy. But before you know it, you are
returning to the sixth floor. My surgery was Thursday, I was in ICU until
Friday night and discharged to Seton Hall on Monday. (Seton Hall is adjacent
to the hospital and is a facility where you recover). It is like a Holiday
Inn and the charge is a nominal.
Let me know if I can answer any questions you may have.
Kate
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Hi Zinger,
Welcome to this forum. I can see you'v e already gotten a lot of good information to sift through here so I'll try to be brief. I hope you will find this forum to be a wonderful source of information and comfort. Do let the doc in Georgetown know what Dr. Fayad said -- thses docs exppect you to get other opinions and should be wiling to discuss any information you have questions about. The location of your tumor determines the course of treatment as much as the size does, so if your tumor is located in a way that the retrosigmoid apporach would not allow good exposure of the tumor, your choices are middle fossa or translabrinthine I had the same choices for the same reason. I ended up having the translabrinthine approach due to two huge hearing drops prior to my surgery (initially scheduled for middle fossa). My advice is get several do your homework,get several opinions and make sure you listen to your gut, it will usually help you make the right decision for you.
Wendy
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Thanks, everyone. I'm going to make an appt with the doc at Georgetown to talk to him about everything again. I'm sure I'll be back soon with more questions!
- Kim
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Hi Kim,
It sounds like you are off to a good start. Just to be different, I am going to suggest you look into Cyberknife, a form of radiation treatment. If you have useful hearing to preserve, I think it is worth considering even if you are only 26. There is enough evidence now to conclude that long term complications from radiation treatment will be quite rare, and the success rate of hearing preservation with radiation treatment is generally accepted to be better than with surgery.
A good place to look into it is the Cyberknife support forum. Two experienced radiation oncologists volunteer time to answer patient questions, and other members chime in as well. It might be worth a look and a quick question or two, before you rule out radiation treatment altogether. http://www.cyberknife.com/Forum.aspx.
Of course it is up to you, and we all understand that each patient is different, and must arrive at their own decision about what treatment is best for them. We will support you in any decision you make. Best wishes, and I hope that next appointment goes well.
Steve
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Thanks, Steve. I met with a radiation oncologist who told me that, although he wouldn't necessarily recommend that I get it, he wouldn't NOT do it for me. So it was another one of those "figure it out yourself" kind of things. I am interested in CK since it's non-invasive and would probably have better hearing/facial nerve preservation, but I do worry about how every doctor says that they can't tell me what things will be like when I'm 50. I'm the kind of person who likes to know what to expect, so I guess that's why my instinct tells me surgery even though my thoughts tell me that radiation would probably be fine. Any advice?
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Thanks, Steve. I met with a radiation oncologist who told me that, although he wouldn't necessarily recommend that I get it, he wouldn't NOT do it for me. So it was another one of those "figure it out yourself" kind of things. I am interested in CK since it's non-invasive and would probably have better hearing/facial nerve preservation, but I do worry about how every doctor says that they can't tell me what things will be like when I'm 50. I'm the kind of person who likes to know what to expect, so I guess that's why my instinct tells me surgery even though my thoughts tell me that radiation would probably be fine. Any advice?
I would seriously consider radiation. Doctors have to give you all the possibilities for potential risks, be it for radiation or surgery, to avoid being sued, later, if something does goes wrong. Of course doctors can't tell you what the very long-term effects of radiation may be and that does leave your treatment decision up to you, where, frankly, it belongs.
The CyberKnife forum is very helpful, as is our own board, dedicated to radiation issues. Many of our members are radiation 'veterans' and can answer your questions from a real-world basis. Unfortunately, no one can tell you what may happen in 20 or 30 years. Considering the size of your AN I hope you'll do more research into radiation treatment but if you want guarantees about the future, then surgery may be a better choice for you, although surgery results can be problematic and again, there are no guarantees either way. I wish it was easier but this is the reality all AN patients have to face, Kim. As I stated in my previous post to you, having an AN is no picnic. However, it's a benign tumor and you do have options. Just know that we'll help as much as we can as you wade through the decision-making process and we'll support your treatment decision and cheer you on during your recovery. :)
Jim
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HI zinger1099,
My hubby was diagnosed with a 4mm in the right ear in July and just had the middle fossa surgery(preserve the hearing) last Thrusday and came home on Sunday.:-) Everything looks good so far.
We met with 2 teams of Docs in MN, 1 was pro surgery (U of M) and 1 was pro radiation( Mayo in MN).
He finally decided on the the surgery because, he wanted to know, what his hearing loss would be right away after surgery, as both teams told us the radation could take the hearing later and he just was not comfortable with not really knowing the long term effects of radiation. And it also came down to the actually team stats/experience of the teams. How many surgeries had they done. What was the success rate (had serviceable hearing afterwards), facial para issues etc. We found that you need to ask very specific questions and make sure they are not giving you the industry numbers but their actual case numbers.
We also posed the question directly at them, " If you had this what would you with your years of experience and knowledge in this very specific areas do?" We found some would be very honest and just tell you, what and why, some would not tell you anything. We found the WHY to be more important than the WHAT.
Best of luck with your decision making process and whatever you decide to do.
Andrea B
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Hello and Welcome.
We are here for you. I have a daughter who is 26 and my heart goes out to you. I hope you have a supportive family. Research, research, research.... you will make the right descion for you. Keep us posted.
Michelle ;D
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Hi Zinger1905,
I was recently diagnosis too. I cannot give you any advice on what you should do because it's a very personal choice. However, I would suggest that you meet with all the doctors and meet with a social worker and talk through everything. Anyway, that's what I did and it seem to help.
I personally am going with the surgery option and it schedule for the 30th of this month. In a week or so I can give you an update on my progress.
Roger64
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I guess that's why my instinct tells me surgery even though my thoughts tell me that radiation would probably be fine. Any advice?
Well, since you asked, sure. ;)
It sounds like the big question for you is the long term. Do some reading; here are some links to get you started.
Carrie had surgery again this year, 20 years after her first surgery: http://anausa.org/forum/index.php?topic=6786.0
Despite claims that surgery after radiation is more difficult, the actual track record is pretty good, should the need arise. Kathleen had a good experience recently, having surgery 6 years after a failed CK: http://anausa.org/forum/index.php?topic=7072.0
Regrowth can happen with either treatment, but fortunately not very often. You cross that bridge if and when you get to it.
One of several topics on the subject of radiation and cancer, with several notable quotes in it: http://anausa.org/forum/index.php?topic=6779.0.
A survey asking neurosurgeons what they would do: http://www.acousticneuroma.neurosurgery.pitt.edu/docsurvey.html
A recent radiation study result, written by surgeons, not oncologists (first posted by Sandra): http://www.emedicine.com/ent/TOPIC668.HTM. It concludes: "patients who have serviceable hearing, no vertigo, and a non-brainstem-compressive or non-hydrocephalic acoustic tumor 2 cm in diameter or smaller are good candidates for stereotactic radiotherapy."
Steve
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Hello Zinger 1905 and welcome. If you live in the metro DC area, you should consider coming to one of the ANA support group meetings. You'll have the opportunity to talk to folks who have had different treatments with both local doctors and doctors from HEI. l
One of the most important things you should ask of any of the doctors you are consulting is how many AN patients has s/he treated.
It's easy to get overwhelmed with information and what seems like conflicting expert advice. This forum and the local support groups can be a real aid to you.
staypoz
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Hi everyone,
I met with the dr. at Georgetown last week and told him what I'd learned from the folks at House. When I told him how the docs at House didn't think retrosigmoid was a good approach, he seemed a little surprised, and when I told him that I'd probably do translab, he sounded disappointed, like he wouldn't get to do the "fun" challenging surgery. This is the direct opposite of the reaction I got when I told the doc at House that I would try middle fossa - he seemed to think that translab would be the best way to go.
So now I am conflicted. I think I've also decided that I want to stay closer to home for the surgery, so that would mean going to Georgetown or Johns Hopkins. I feel like the doc at Georgetown would do a good job, but his reaction to my surgery-approach inclination was a little off-putting. I'm thinking about doing a consult at Hopkins to give me a third opinion about the approach that would be best, but it may also confuse things more (more options, etc.). I'm also planning to get another audiogram soon because I think my hearing may be getting worse, and if it is, then I might not be so wary of going translab.
Does anybody have any advice or anecdotal stories to share? When I talk to other people about it, they don't seem to understand the conflicting feelings that I'm having about the type of procedure to choose and who I want to have perform the surgery. I mean, I would LIKE to keep the hearing, but even doing the RS procedure isn't a guarantee of that, so I think either way I need to be prepared for SSD. At least with translab, I KNOW what is going to happen in regards to the hearing loss. I just really hate "unknowns." Always have. But then I feel bad that I might be "throwing my hearing away" by choosing translab, and then I feel kind of selfish because the hearing would be sacrificed for a better facial nerve result (hopefully), so then it would be worth it I think. Sorry for rambling :)
Kim
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Hi Kim-
Not sure how I missed this post originally - sorry about that!
I think that this is the hardest stage of the whole - the part where you hear seemingly conflicting medical opinions. For while during my early days, there was some discusiion between my neurosurgeon and neurotologist as to whether retro sig or translab would be better. And, like you, I was conflicted about the hearing versus facial nerve thing. I ended up getting translab which turned out to be a very, very good decision for me since my tumor ended up be "very" sticky. No way of knowing that until they get in there, of course. The thing that tipped the scale for me was that the neurotologist felt that the chance of perserving my hearing with retro sig was so small that it didn't warrant the extra rsik to the facial nerve. (footnote - I did end up with facial paralysis, but it is healing and I look pretty good now.)
If you haven't already done this, ask the neurotologist (not the neurosurgeon) what he/she thinks the odds are for preserving usable hearing. That may help you in making a decision. Also, ask if they think the tumor is touching your facial nerve at all. In my case, they knew that the facial nerve was at least a little stretched over the tumor, so that would increase the risk of damage during surgery, especially if they didn't have a clear look at the nerve (which they get in translab).
And, yes, I'd definitely get another opinion, especially if you didn't feel totally comfortable with the doctor you already saw. I consulted with three surgeons (including HEI) and it was the third one I picked - I knew right away that they were "the guys." You'll know when you feel comfortable.
Debbi, cheering you on from NJ
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Hi Kim,
Still not interested in CK, I see. ::)
It is not so unusual for a neurosurgeon to favor retrosigmoid, while the neurotologist favors translab. To each his own. Since the HEI doctor doesn't favor middle-fossa, it would seem that surgery to save your hearing is not likely. As he said, RS doesn't get at the canal very well, and your AN is small enough that much of it is probably in the canal. Unless they left some in there, you would likely lose your hearing with RS. The general feeling is that translab is less risky for facial nerve damage, although there are cases of both approaches avoiding that problem - and cases of both approaches incurring it.
If you get a translab, I would find a surgeon who does a lot of translabs - more likely a neurotologist than a neurosurgeon. I'm sure there are some closer to home than House that you could contact, probably at Georgetown or Johns Hopkins. There is still no rush, so take your time to find the right doctor and the right procedure for you.
Steve
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Hi Kim,
These decisions are so tough. Even if you favor surgery over radiation, there are the types of decisions you're dealing with now - retro vs. translab, hearing vs. facial nerve, choice of surgical teams, etc. I can really identify with what you're feeling!
You've received lots of great info from everyone here already. Whatever you chose will be what feels most right for you, all I can add is how I personally dealt with this decision.
I had a 1.6 cm left AN (1.9 at the time of surgery 6 mos. later) that was mostly located in the CP angle, with only a small portion in the internal auditory canal. I had 96% hearing, but was not a candidate for a middle fossa due to the location of the tumor.
I live in LA, so my first consultation was from a doctor at House - I'l just call him doctor #1. Doc #1 said translab, and would not even consider anything else. I was SO disappointed that he wouldn't even discuss saving my hearing.
I had a second consult at UCLA where a friend of mine had a retro, and six months later was doing fine. But I just wasn't comfortable with the number of surgeries they did compared to House.
I had been reading of other House docs from forum members, but didn't think I could go back to consult with a different doc at House. Turns out I was able to consult with two more doctors there. Doc #2 at House said he'd do a retro if the ABR test showed good activity of the hearing nerve, but when the results came back, it put my chances of hearing preservation at only 20%. He said in this case he'd prefer to do a translab.
I really wasn't comfortable having surgery without at least the attempt to save my hearing. Doc #3 put my chances at about 35% - still not great - but I felt more comfortable going into surgery with at least some chance. I had also researched others on the forum who had retros either with the same team or at House, and none had suffered any facial weakness, which was my other concern. I was lucky that I did not have a sticky tumor and they were able to remove it all. They were not able to save my hearing, but I had no other post op issues and recovered fairly quickly. I, personally, feel better that I went this route and my hearing nerve was preserved, even if the hearing never returns (which it probably won't). It's just what I needed to do to make myself feel comfortable.
It's great that you're doing your research and have lots of options. I'm sure soon you'll find one that feels right for you.
Wishing you all the best in your decision-making,
Nancy L
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It is not so unusual for a neurosurgeon to favor retrosigmoid, while the neurotologist favors translab.
I'm not sure these choices are specific to neurosurgeons and neurotologists.
My neurotologist gave me the choice of retrosigmoid or translab - after I decided that radiation (GK) wasn't for me.
The hearing in my AN ear was serviceable and my word recognition was very good. I picked retrosigmoid because my feeling was if there was a chance my hearing could be saved, I wanted my surgeons to at least try to save it. I knew that chances of keeping the hearing I had weren't great, but I felt if I picked translab I would always be wondering "what if?"
Long story, short, I took a gamble and I lost. My AN was wrapped around my hearing nerve and in order to completely remove it my hearing nerve was sacrificed. My neurotologist felt horrible about this, but my feeling was - you did your best which is all anyone can reasonably ask for; sh*t happens; life goes on. I had a BAHA implant and I don't regret one single part of my AN journey.
Although I've read many, many times that retrosigmoid compromises the facial nerve and leads to damage, my facial nerve wasn't damaged. I've also read that with retrosigmoid sometimes ANs can't be completely removed; this wasn't true in my case. IMO you can hear all the odds in the world, but until they do or don't become your reality, they don't mean a whole lot.
My advice is do what you think is best for YOU. Like Debbi said you'll "know" when you have the right docs for you. I also believe you'll "know" when you make the right treatment decision. Go with your gut.
Good luck,
Jan
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Hi Kim,
The two surgeons who i talked to both recommended RS surgery for me 1. because of the location (in the CPA not the IAC), 2. I had functional hearing (about 70%). I was hoping very much to keep my hearing, but was warned that my chances were low (around 20%). I was told i had 10-15% chance of permanent facial paralysis (which was obvious a huge fear) and between 25-50% of temporary paralysis (although i didn't know how long "temporary" could be!!).
My hearing is gone, which i got over pretty fast as i had bigger problems... severe double vision and facial paralysis. I was told that the tumor was sticky (2% left behind) and the facial nerve was very stretched (i did not have any facial weakness prior to surgery). But on a brighter note, i had no lasting balance issues, no headaches, no serious complications.
My double vision has totally recovered (but i did not really notice improvement until after month 3, and it was totally fixed by month 5). I still have paralysis, but i am still hopeful for a recovery (some movement coming back in cheek at jawline).
Anyway, i think it helps to hear as many stories as you can. I hope you can get comfort on what is the best thing for you to do.
SSD is not the end of the world, but i hope you can avoid it. Good luck with your decision making. You will get there!
Trish
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Hi there,
I would vote for the third opinion and than go with your instincts. I got three opinions and they were pretty much all the same which was very good. I went for the team that made me feel the most comfortable. I have never regretted my decision. Good luck, whatever you decide.
Marci
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Hi zinger, I was also recently diagnosed and it sounds like we live in the same area. I have contacted Georgetown, but not met with them yet. I have an appointment at J Hopkins in Dec. I have also read about the House Ear clinic on this site but would prefer the east coast. However, I am willing to go to the best in treating acoustic neuroma. I have a 1.9 cm AN.
I mostly read other peoples stories on the site and find it very helpful.
sgk
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Hi Kim,
If you've had a drop in hearing it would be a good idea to have another audiogram. When I first decided to have surgery, my hearing was good -- 80% speech discrimination. After going for several consultations both with radiation oncologists and surgrons, I settled on surgery with the first neurotologist I saw. I had the most confidence in him and liked him on a personal level as well. To me, he just exuded confidence and made me feel like I would be in the best hands possible.
My neurotologist discussed all of the approaches with me and suggested either middle fossa or translab. He told me retrosigmoid was not a good option because of the position of my AN (growing laterally in the IAC) and that with retrsigmoid, there was a good chance he would have to expose my inner ear, thereby destroying my hearing. He also told me that if my biggest concern was for my facial nerve he wasn't' opposed to doing translab since it offers the best outcome for the facial nerve. It sounds like you have very much the same problem. Unfortunately for me, although we agreed upon middle fossa, before my suirgery I had two large drops in hearing (speech discrimination went down to 24%) and that settled that, he used the translab approach. I have to stress, my doctor didn't push me one way or the other on my decision regarding the approach he used -- he just told me my options. You are young and pretty so don't feel embarrassed or feel selfish or ashamed if you choose translab because it gives you your best shot at preserving your facial nerve over the possibility of saving your hearing. Many people do fine being SSD and BAHA or TransEar would certainly help. Do get that next opinion -- it might provide the help in making your decision you hope for or it could just be another opinion. Ultimately, you have to make the choice. Just be sure that you make the decision that is RIGHT FORYOU -- no what a doctor or anyone else wants you to do.
Best wishes,
Wendy
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Thanks, everybody. I have an appt at Hopkins tomorrow, and I'm optimistic that this will help me decide what to do. I appreciated hearing all of your stories - it's very helpful to know that I'm not alone in this.
Kim
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Hi Kim
I'm sorry to hear of you diagnosis. How did you get on with your consultation?
I think you are in a similar position to me. I am 24 years old and have a 1.5cm AN in my left ear. My hearing is almost normal and i only have slight tinnitus and a feeling like my ears need to pop. I was diagnosed in Augist and like you ruled out GK (I am based in the UK and we don't have CK here). I'm still deciding between translab and middle fossa.
I am leaning towards having the translab as there is better outcomes for facial nerve preservation with the translab and that is my main concern regarding surgery. I had a CT scan this morning so that the doctors could check the bone density. They said that if it is too dense in the mastoid (?) it makes translab more difficult and in that case I might be better having the middle fossa. Maybe this is something you could ask your doctors about to help make your decision.
Best of luck to you
Hannie
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Hi Kim,
Our 19 year old son was recently diagnosed (9-17-08) with a 10x9x7 mm AN. Like you, we have ruled out radiation treatment and the 'wait & see' method. After discussion with the House Ear Clinic in Los Angeles and a surgeon in Kansas City we found out about the Skull Base Institute and their minimally invasive endoscopic method to remove the tumor. Our (son, dad & mom) 'gut feeling' is that this is the surgery for us.
I am not here to push you in any direction, only you can decide what is best for you. We only post this to let you know of this minimally invasive technique and offer that you may want to research this method. Their website is www.skullbaseinstitute.com. Incidentally, our son's surgery is scheduled for Dec. 29, 2008 at the Skull Base Institute in Los Angeles. If you like, we can keep you informed about the surgery.
Thank you.
Ron & Karen
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Hello,
I think I am in the same situation as you are. My AN is 1,6 cm and I have perfect hearing on both my ears and my balance is also normal. I can agree with you when you write that it feels weird to go for a surgery where you end up with deafness on one ear. I feel exactly the same way! My doctors have suggested me the retosigmoid approach, but I'm beginning to worry about the fact that they won't get the whole AN away. I've heard on the forum that the retrosigmoid approach isn't so good when it comes to getting the whole AN out of the IAC canal. I don't know if it is true... I was very sure that the doctors would suggest the translab for me, but they didn't, so I wonder a lot about if it is the best approach. It is very important for me to get the whole AN away.
Best wishes,
Catlover
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Catlover,
With my retrosig surgery, a tiny bit of the tumor was left behind to spare the facial nerve. Dr. said that it would very likely die off, as its blood supply was cut off. I am not worried about it growing back. If by any chance it does, I will have that baby zapped in a heartbeat.
Syl
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Hi Syl,
I have a question. If they left some tumour behind (as they did with me) how did they cut off blood supply? Not to be a pesimist but how would they cut off blood supply if it is still attached to the nerve?
Michelle ;D
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UPDATE - I went to Johns Hopkins before Thanksgiving and met a new doctor who is much better at explaining things. I have much more confidence in him and the process overall at Johns Hopkins, so I think I will be going there for my surgery. I have an appointment next week to meet the neurosurgeon, have a new hearing test, and meet with the first doctor again. If everything goes well (I think it will) then I will schedule a date for the surgery. I'm also getting a new MRI tomorrow to see if there is any growth from August.
Catlover - I think we are in the exact same situation. I, too, am concerned about getting all of the tumor out of the IAC with the retrosigmoid approach. I am going to ask specifically about that at my appointment next week because I would hate for it to be able to grow back. I'll let you know how the doctor responds. Are you planning to have surgery soon, or are you still taking some more time to think about things?
Syl - I am also interested to hear how they cut off the blood supply. This is one of the things that is making me nervous about retrosigmoid.
Ron & Karen - Thanks for the info. I hope your son's surgery goes fantastically!
Hannie - That's interesting about the bone density test. Are you closer to making a decision?
Take care all,
Kim
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Hi Syl,
I have a question. If they left some tumour behind (as they did with me) how did they cut off blood supply? Not to be a pesimist but how would they cut off blood supply if it is still attached to the nerve?
Michelle ;D
OK, I have always been confused about that. The tumor grows off the schwann cells of the vestibular branch of the eight nerve (aka the acoustic nerve). So that's where it would get its blood supply from. Once it is removed from the acoustic nerve, its blood supply would be cut off, even if it touches the facial nerve. Surgeons do tend to leave some part behind, when it is "sticky" to the facial nerve, but it shouldn't have any blood supply, right? ??? Or is it that somehow other blood vessels feeding it grow in the process? Any experts on this out there?
On the issue of portions of the AN remaining in the IAC, I have never heard of this happening. The most common reason for not removing the entire tumor is to preserve the facial nerve and most patients specifically request this.
Marianna
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Hi Syl and Kim,
Thanks Syl for explaining so well about the blood supply to the AN. What I heard from the doctors, my AN has grown out of the IAC canal, but it is not pressing towards the brainsteam and I am very happy about that. What I don't know is how/if the AN has streched any of the other nerves. I really hope that they can cut off the blood supply if they must leave a piece of the AN behind to save my facial nerve. I think I'd feel better if I knew that they could remove the whole AN, but I am very afraid of facial paralysis and double vision.
Kim, it is obvious that we both have the same concerns and thoughts right now. I'd be grateful if you could get as much kHere in Sweden we don't have the same system as you have when it comes to paying for the surgery. We pay for all medical care in our taxes and therefore we meet with the doctors who are as near your area as possible. But of course it has to be a big hospital with specialized doctors. Sometimes I think that you have a hard time both deciding which hospital and doctors to turn to, but also that you have to make decisions about which approach to use. Here it's simplier in many ways, but it is also scaring that the doctors decide which approach to use. I must say that I'd rather be SSD than having double vision and/or facial paralysis. Maybe, this is a silly thing to say, because I have 100% hearing in both my ears right now and I can't possibly imagine what it's like to be SSD.
Sooner or later I'll get an appointment with the neurosurgeons and then I can discuss the risks of getting the facial nerve destroyed or paralysed. I'm also concerned about if I would accept his proposal of doing the retrosigmoid and if I should do the translab instead. I'm sort of scared to dead about the facial paralysis,
Have nice day and don't think about your AN's!
Ha det bra i veckan!
Helene
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I'll chime in here with what I think I know, but am not entirely sure of, about surgery and blood supply and stuff like that. The question of blood supply enters into radiation treatment, too. I'm no expert, though, so take it with a grain of salt. :)
The growing tumor cells are schwann cells gone bad, and the tumor will develop a blood supply as it grows, piping in blood through newly formed blood vessels within the tumor. As it is schwann cells, I believe the tumor can attach to and eventually feed off of any schwann cell covered cranial nerve, with the 8th, 7th, and 5th being prime candidates. Where it started is just that, not a limit on what else it may glom onto.
Surgery will cut most of the blood vessels within the tumor, as the bulk of the tumor is removed. If some of the outer part of the tumor is left stuck on a nerve, it will be a race to see if it can re-establish a blood supply before it withers and dies. One of the effects of radiation is to destroy blood vessels, with much the same consequence for the tumor, so those cells not toasted by the radiation in the first place starve to death instead. According to my ENT, this disruption of blood supply can also affect the nerves themselves, which may suffer when their blood supply is so rudely interrupted.
It is all rather gory and violent, in fact. :P
Steve
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I'm not too clear on that either, but I figure when the rest of the tumor is removed so is the blood supply of the remaining cells, like Steve explained. Another thing I'm not too sure about is that tumor cells are left behind only with the retrosig procedure. Depending on how sticky the tumor is, say to the facial nerve, some of it could be left behind with any of the three approaches.
Syl
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Thanks Steve for the explanation, this makes a lot of sense.
On the issue of the interruption of blood supply to the nerves, you are correct that this often happens, with surgery or radiation. This is the reason why people report that "hearing nerve is intact, but hearing was lost anyway". It is because the hearing nerve lost its blood supply. Same can happen with radiation, even if the nerves are spared from the radiation itself, they may suffer from the interrruption in blood supply.
Marianna
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Kim:
I'm not sure of the specifics of your case, but you bring up some good points about leaving a 'tumor remnant'. If your tumor is isolated to the IAC, then the fate of the tumor remnant is dependent primarily upon the location of the remnant and the amount left behind. If the tumor extends all the way to the fundus (ie the lateral most portion of the IAC), then the surgeon has to be particularly careful as the blood supply at the lateral aspect is most robust--which can lead to re-growth. In general, the middle fossa approach is thought best able to visualize the lateral portion of the IAC, but may still require some 'blind dissection'--they use angled mirrors, fiberoptic scopes, etc for the lateral most end. Also, because of the angle of approach, the translabrynthine approach is able to get the lateral most portion of the IAC, but hearing is immediately sacrificed. Traditionally, the retrosigmoid has been least able to see the lateral portion(and there are papers out there that address this issue specifically). However, there are some surgeons (primarily neurosurgeons) who feel that they can visualize the lateral portion well despite the anatomic obstacles.
I empathize with your decision and situation as I recently went through it myself--October 22nd. There were some issues that I was, frankly, unprepared for despite massive reading and research. I can, however, state emphatically that I'm glad it is over and I have been recuperating at a good pace. If I can be of any help, please don't hesitate to email, etc. Good luck.
Dufreyne
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There were some issues that I was, frankly, unprepared for despite massive reading and research.
Dr. D -
you've piqued my curiosity. Can you elaborate on this?
Jan
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Kim:
I believe the question of how the tumor's blood supply is cut off has been adequately explained. I'm grateful, because I couldn't have explained it nearly as well. :)
In my case, my neurosurgeon 'de-bulked' the tumor, (via the retrosigmid approach). That is, he cut most of it out ('resected') and left some behind so as not to disturb the facial nerves. That was successful and following the surgery, my symptoms disappeared but I experiened no facial paralysis or other facial nerve-related issues. As planned, I underwent post-op radiation (FSR) 90 days later, specifically designed by my neurosurgeon and a very talented radiation oncologist, intended to destroy the remaining tumor's DNA while, again, not damaging critical facial nerves or surrounding tissue. This was also successful and I experienced no ill effects from the (26) FSR treatments.. My last MRI (August, 2008) showed a slight shrinkage of the remaining tumor as well as definite signs of necrosis (cell death). I had 'lost' the hearing in the AN-affected ear some years before the discovery of my AN. Unfortunately, my hearing nerve had already been irreparably damaged by the AN (that I probably had for years) so I remain SSD in the left ear, but cope fairly well. My SSD isn't a life-altering problem, just an impediment.
I trust that your MRI scan won't show any growth, all of your questions are adequately answered and you can schedule your surgery at a convenient date for you.
Jim
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Jan:
I was referring to the tinnitus primarily. I knew it existed as a post-op potential complication, but had no real understanding of how intense this sensation could be and the fact that it would be present 24/7. I am happy that this has not been an issue for you. I hope to be in that category at some point. I will say that it has improved since about 4 weeks post op (I'm at almost 7 weeks now). Also, I have learned to deal with it to some degree as well. I try to avoid loud areas as it tends to intensify with loud ambient noise. I emailed the neuro-otologist who reports that this will likely improve with time, yet I've talked to others who have had to deal with this constantly since their surgery. I am in the hopeful stage.
D--
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Hi D,
I posted Ear Plugs under hearing, you might be interested in what I am using.
Michelle ;D
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Hi Kim,
Sorry that I am replying so late I've been off the forum for a little while. But, I just had my surgery on Oct. 30 of this year and I am more than willing to let you knoow what I've went through to prepare you more. However, it looks like everyone has told you the basic already. I am truely sorry that anyone has to go through this but, I must say this forum and the people on the forum are a great support group and they have help me with my AN and SSD.
Take Care,
Roger
P.S. Shelly, Hope, Josie, soon to be here baby Seth (Jan. 21) and I would like to send you all our warmest wishes for a bright and beautiful New Year.
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Hi!
I am the current keeper of the magic scarf that passes from person to person (at least those of us having surgery to remove these tresspassers). From the looks of the AN calendar, you are next. I'd love to send this on to you so that you can enjoy the warmth and encouragement that I found with this little piece of fabric. Can you send your mailing address to me?
My retrosig procedure was 1/13 and I'm doing really well. I'm glad to send your way!!!
Kathy
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ZInger:
After reading your post I intended to suggest you consult with doctor Eiseman at University of Maryland and Dr. Tamargo at Johns Hopkins. I consulted with doctors at Georgetown, JHU and UM and felt more confdent with the doctors at UM and JHU.
I noticed from your signature that you have surgery today at Johns Hopkins. Dr. Tamargo is a excellent choice. My prayers are with you. I know your surgery will be a success. Please keep us posted.
Sonja