ANA Discussion Forum
General Category => AN Issues => Topic started by: Seal on January 15, 2009, 08:33:49 am
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Hi All,
I was just diangosed yesterday with AN, and I'm just starting the process to analyze and gather information. The biggest question is whether I can find good treatment in proximity to Rhode Island (New England area) or whether travel will be necessary. Any comments on particular hospitols and/or doctors would be appreciated. I've been going through these posts, and I'm sure there is alot of good info already posted here.
Regards,
Steve
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Mass General in Boston is the place to go around the NE.. there's a large contingent of patients here
Welcome! (I'm next door in Connecticut)
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Thanks Joe. I also heard that there was an experienced doctor at Yale in New Haven which would be closer. Since my symptoms are advanced, I'm trying to jump on this quickly. My total hearing loss started around the holidays with balance probelms and facial nerve loss around New Years. I'm hoping quick action can minimize and/or reverse some of what has happened.
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Hi Steve! Welcome to the forum! You've come to the right place to ask questions (like you already did). While I'm not in the NE (quite the contrary, in the south) I can't comment on doctors or facilites in your area. You didn't mention the size of your AN, so I'm not sure (and others won't be either) about to recommend CK, GK, Surgery, etc places.
Welcome to the little club that nobody wants to become a part of.
Regards,
Brian
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I m in N.H. we have Dartmouth Hitchcock medical center w/ awsum docs.DR.Erkmann neaurosurgeon removed my tumor.I have no facial weakness.Mainly balance issues.I had translab i have some hearing left in my right ear.The # to call is 603-580-5000.
Dr.Saunders is my ENT.Good Luck what ever path you choose.
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Thanks guys. I don't know how large it is just yet, but I'll find out. How much chance is there of getting the hearing back? Once it pinches the nerve, is it gone or does it come back in some cases? I'm also an avid long distance biker and also spend alot of time on the ocean fishing with my boys. So balance is probably more important to me to see it restored and hopefully preserve the quality of life that I currently enjoy with the kids.
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Steve -
Hello - and welcome. Although I'm sorry you have a reason to be here - an acoustic neuroma diagnosis - I think I may be able to offer you a suggestion on a doctor/hospital.
My doctor was Issac Goodrich and he performs AN surgery out of The Hospital of Saint Raphael in New Haven, Connecticut. Dr. Goodrich is a neurosurgeon with decades of AN removal surgery experience, stretching back to the 1970's (also known as the 'AN Dark Ages'). Dr. Goodrich is not 'cut-happy' and if your AN is small, he will probably refer you to a radiation oncologist for treatment. In one case of a patient I referred to Dr. Goodrich, the doctor decided the man's AN was too small to benefit from surgery so he made an immediate appointment with the radiation oncologist for the patient and personally escorted him to the oncologist's office, located in the hospital next door. This is the kind of caring and compassionate doctor he is.
In my case, I presented to him with an advanced AN (4.5 cm) and some fairly serious symptoms. I made it very clear that facial paralysis was my biggest concern with having surgery. Dr. Goodrich listened carefully and mapped out a plan wherein he would 'debulk' the tumor, in effect, hollow it out and cut off it's blood supply, then have me submit to FSR to kill the remaining tumor cells. We followed that plan and it worked out splendidly. The surgery was successful, reducing the tumor to about 2.8 cm, and the radiation treatments were uneventful but also successful. On my last MRI scan, the remaining AN was shown to be undergoing necrosis (cell death) and had shrunk a bit, only 2 years following the surgery and radiation. Naturally, both doctor and patient were elated. :)
I hasten to mention that my symptoms prior to the surgery were becoming profound and included loss of equilibrium, loss of the sense of taste and sharp, stabbing pains on the side of my head where the AN resided. I had lost over 30 pounds due to not being able to taste my food and I was very fatigued. Within a few days of the AN removal surgery, my appetite returned, my balance improved and the stabbing pains disappeared. My initial surgical recovery was a few weeks (I was allowed to drive again in 2 weeks) and I suffered no adverse effects from the subsequent radiation treatments administered a few months later (as planned). Of course, my experience cannot guarantee anyone else's, including yours, but I wanted to offer my doctor's name and hospital affiliation for your possible consideration.
Here is a link to Dr. Goodrich's practice: http://www.ct-neurosurg.com/ (http://www.ct-neurosurg.com/)
Dr. Goodrich's photo and a brief resume are included on the website under 'Our Doctors'. He is in his late 60's and operates out of The Hospital of Saint Raphael in New Haven. http://www.srhs.org/default.cfm (http://www.srhs.org/default.cfm)
I highly recommend Dr. Goodrich and I trust this recommendation will prove useful to you.
Jim
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Steve,
In most cases, the rule of thumb is that whatever hearing is gone at the time of treatment will be the MOST that you can expect after. There are some exceptions to that rule as some have better hearing after treatment, but I wouldn't say that's the norm. That's unfortunate, and I'm not entirely sure why the damage to the hearing nerve cannot be healed with time. I'm sure there's a good medical reason for it.
Hearing loss, total or not, can be overcome if it's bothersome. Many people say that hearing loss after treatment is just fine (with slight modification of expectations, etc..), but others who say that hearing loss adversely affected them and their way of life chose to get a BAHA or TransEar hearing aid (if they have total hearing loss on one side) and yet others who have just some hearing loss have chosen other hearing aids. Most doctors will tell you that hearing, while important to most of us, is down the list of priority to getting the entire tumor and saving the facial nerve because relatively little can be done about the facial nerve being damaged (which causes parallysis of the face, dry eye, etc...).
I would thing that your balance wouldn't be materially affected to the point that fishing, at some point in the future, wouldn't be possible. Heck, I'm 8 months after surgery and I go camping and have been bowling recently. It's different, but not impossible. You do what you can, when you can do it. It just takes patience and time. USUALLY.
Let us know what you find out about the size. That greatly affects the choice of treatment options you have available to you. Generally speaking, the smaller the tumor, the more options you have. Jim and I both didn't have much option beyond surgery. My surgery got the entire tumor (they say), while Jim's "debulked" it and followed up later with radiation treatment to kill the rest. Most surgeons will say that it's always a possibility of doing that; but they'll get the whole thing if they can without causing too much trauma to the facial nerve and risking perment issues there.
Regards,
Brian
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Jim,
Thanks for the referal, and he definitly sounds like one that should be on my list. New Haven is only 1.5 hours away from the house which is a plus, but Dr. Goodrich certainly seems to have the wealth of experience that I would prefer. I'll follow up with him soon.
Brian, thanks as well for the encouragement and straightforward info. I'll just have to deal with whatever cards I get dealt and be happy about it! I have also lost feeling in my face and down into my throat enough to not feel or taste food; I've even bitten my tongue a couple of times because I don't feel it. It would be a big plus to eventually get the taste back; I do love to catch and then create our own meals from the sea in the summertime!
Thanks for the help guys. I'll try to find out tomorrow what the measurements are on the AN. Based on my symptoms though, it must be pretty good size. I'm also lucky to have a cousin who is an ENT at the Geisinger Institute in Danville, PA. Hopefully he can give me some guidance when the final decision needs to me made.
Best regards,
Steve
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Hi Steve and welcome. Well, I'm part of the Boston Brigade on this site (and evidently, one of MANY moderators based in the NE... :) ) Glad to see you here and welcome.
Much info here. If you go to the home page of the discussion forum, then at the top, do a "search" option, there has been a LOT of info, over the past few years, in regards to treatments in the NE. You can try doing a search by each treatment option or location. that may be a good start.
the ANA also offers a WTT (Willing to Talk) list. This is a list of patients that volunteer their time to answer questions, provide insight into their particular AN Journey. You can obtain it by phoning or emailing the ANA office (go to the home page... www.anausa.org) and their contact info is noted on the bottom left side of web page).
Once a quarter, I organize a brunch in Worcester MA for those of us on this discussion forum. A great opportunity to get together in a VERY fattening, relaxed environment to meet and talk. Usually posted in the AN Community forum. Should be organizing the next one soon. Keep an eye open on that forum for updates (Usually noted as the ANA Discussion Forum NE Brunch).
As you can see by my sig line, I had Cyberknife radiation on my AN almost 3 yrs ago (wow, gang! that long now!). I had it done in Boston and many here (as previously noted) have been treated in town. So, any questions for me, I'll be glad to answer and help as best as I can.
so, that is my welcome to you. Glad to see you here (although the reason stinks) but looking forward to further participation here from you.
Again, welcome!
Phyl
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[...]
Brian, thanks as well for the encouragement and straightforward info. I'll just have to deal with whatever cards I get dealt and be happy about it! I have also lost feeling in my face and down into my throat enough to not feel or taste food; I've even bitten my tongue a couple of times because I don't feel it. It would be a big plus to eventually get the taste back; I do love to catch and then create our own meals from the sea in the summertime!
Thanks for the help guys. I'll try to find out tomorrow what the measurements are on the AN. Based on my symptoms though, it must be pretty good size. I'm also lucky to have a cousin who is an ENT at the Geisinger Institute in Danville, PA. Hopefully he can give me some guidance when the final decision needs to me made.
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Pre-treatment symptoms aren't a very good indicator of size, fyi. Jim had major symptoms and a big tumor. I had a big tumor but not debilitating symptoms (just tinnitus and loss of hearing). Others have had pretty major symptoms with a very small tumor. Other still have had no symptoms at all with a pretty big one. We're all over the map about what symptoms and how big our tumor is/was. It's more important as to WHERE the tumor is and to what it's "attached" itself to that indicates symptoms. The fact that you have numbness of the face amd throat would indicate, to me, that the facial nerve is more involved than, say, the balance nerve. In the general area of the tumor, the balance, facial and hearing nerve are all together in close proximity. Where the tumor is exactly situated (on whichever of the 3 nerves) more dictates the symptoms rather than size. Not always, but much of the time.
In all likelihood, with some time after treatment, balance won't be a problem and the taste issues will be resolved. Unfortunately, that's not true of hearing much of the time.
You are very lucky to have an ENT to help guide you. Hopefully he can give you some information and help guide your treatment choice based in facts rather than other things. Phyl's exactly right in that there is a great amount of information here about the tumor, treatment options, complications, and even doctors in the NE. While I'd love to go, their annual get together in the NE sounds like a blast! I highly encourage you to attend one if you can.
Kindest regards,
Brian
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Phyl, thanks for the "welcome!!" Please keep me posted on that meeting in Worcester. I'm sure that it would be a great benefit to me at this early stage. I have to also say that this forum is wonderful, and you all have been great already with offers of advice and help. How did we live without the internet just 20 years ago?
Brian, my primary doc told me that the AN is 24mm X 22mm X 21 mm in size. That seems small compared to others that I have read about on this forum. However, your explanation makes more sense and maybe just a little more disappointing. If I have these kinds of symptoms already with a relatively small tumor, than that may not bode well for recovery of all my nerve functions. I'd like to recoup any hearing that's possible, but I'd still be happy with the face, mouth, and throat feeling as well as my balance. At 52 years old and three little kids, I have alot of motivation to get back to as close to normal as possible. There are too many good things to come, and I don't want to miss anything with the kids whether its a good day of fishing, shooting some hoops, or a long bike ride to take away the work stress.
My ENT cousin should be a great help in coming to a quick decision on the treatment once they (his team at Geisinger) review the MRI on the disc we just mailed out to him. Once we specify the "process", I hope then that I can start meeting with the doctors in NE that have the most experience with the final chosen process, whatever that ends up being.
One question: I assume that tumor removal has a more immediate and rapid effect on nerve restoration, as compared to gamma knife. Since gamma knife success depends on cellular death of the tumor over a period of weeks and months, wouldn't that possibly result in further nerve damage and decay of those tissues making conservation or restoration less possible?
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Steve,
At that size, which would be considered medium approaching large size, you may find a gamma knife facility willing to treat with GK. Usually, there is some swelling of the size as initial reaction to radiation so that your tumor may become larger before it dies. It really depends on WHERE it's located and what might be impacted by the swelling of it's size. Please consult your doctors about best possible treatments given it's location and size (among other considerations). Between the time of treatment with GK and when one might see swelling, decrease in size and hopefully necrosis (cell death) usually happens over the course or months or years. You have to be in the right frame of mind (thinking in those terms) to be able to wait that long. For many, they can do it and others "just want it out!" and opt for surgery.
The recovery time for nerves is as slow for surgery as it would be for other forms of treatment, I think. I can't speak terribly much for radiation, but for surgery it's been painfully slow (I'm 8 months out of surgery and the facial nerve hasn't fully recovered although it's very close). Others can give you a better idea of timing, issues, etc..
I will tell you that my tumor was 30mm (or 3cm), which seems small, was considered large. Surgery was really my only option due to size and because of location (already putting pressure on the brain stem). That's where doctors come into the equation for deciding on treatment. They can tell you where it is and what will likely be affected by various treatment options. Consult both radiation specialist and surgical ones. Get opinions from both.
There is a great likelihood that being there for your kids, doing things with them (fishing, shooting hoops, bike rides, etc..) is not going to be impacted significantly by this. It may for awhile while you recover from whatever treatment you choose, but in the long run you should still be able to do those things. I have 2 kids of my own (8 and 3), so I can totally relate to you about wanting to be there to do things with your kids. I can tell you that for a short while it was impacted, but overall it won't be. Worry less about that if you can.
Keep the questions coming... :)
Regards,
Brian
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Seal~
Hi! I, like Brian, am from Texas, so I can't help you any with Dr's there. I did want to comment on 1 thing that you said. Even though you seem to have more "symptoms" now - I don't think that that necessarily means they will TOTALLY stick around after. I, personally, think it has to do with how "sticky" your tumor is. Many of them are sticky and they have to work harder to get them out and thus the nerves are stretched more. There is no way (that I know of) for them to know this until they get in. IMO, that would be why the way that Jim went with surgery & FSR would have its benefits! Just my opinion!
K
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Steve ~
Checking back on the thread I note that Brian ('Pooter') and others have offered you some sound advice but as Brian mentioned, for specifics on your AN (which is medium-sized) and what might be the most efficacious way of addressing it (surgery or irradiation) you'll need to consult with a physician, and likely, more than one. My neurosurgeon approached my specific AN in a manner that gave me a good chance to avoid some of the common complications of AN surgery (facial paralysis, double vision, headaches, etc) and then, employed radiation (FSR) to destroy the remaining tumor's DNA. The FSR was 'low-dose' and I suffered nothing but boredom during the 26 separate treatments (about 25 minutes each, 5 days a week for 5 weeks +1 day). As I've stated, my experienced neurosurgeon (Dr. Goodrich) and later, the bright young radiation oncologist he worked with (Dr. Haas, now re-located to Long Island, N.Y.) teamed up to offer me the best possible approach to destroying my tumor while maintaining my quality of life, afterward. They succeeded magnificently, in my opinion. Even so, neither one could guarantee the outcome of either the surgery or the radiation, except that the radiation oncologist promised me that I wouldn't lose any hair (after initially saying that I probably would. I didn't.) It can be maddening, but the fact that no one, including your doctor or anyone posting here can accurately and honestly predict outcomes of either approach remains the harsh reality of dealing with an acoustic neuroma. Still, we all seem to muddle through, somehow. O.K., some muddle better than others but we all go on with our lives, slightly altered of course and usually with a changed perception about the meaning of life and our place in the world, but still, we carry on and life returns to normal, often, a 'new normal'.
I wanted to mention that although my AN was large and pressing on my brainstem (Dr. Goodrich wanted me in surgery almost immediately but it was more like 3 weeks before I was wheeled into the OR) my symptoms did not really manifest themselves to the point of becoming disabling until a few weeks prior to my diagnosis. I have an aversion to doctor's offices so I ignored them as long as possible but they finally got so bad that I had to do something. Unfortunately, my hearing in the AN affected ear had slowly disappeared over a 5-year period and even though the surgery was successful, the nerve was damaged beyond recovery and I remain deaf in my left ear (SSD or Single Side Deaf). I believe I cope fairly well with it. I'm a relatively fit 65, (21.6 BMI) and while I'm no athlete and prefer a nice air conditioned hotel room to a camping tent, I don't sit around all day, either. I think my balance, although not exactly what it was before the AN affected it, is quite serviceable. I do everything I did prior to my AN diagnosis. However, if I happen to lose my balance (trip or stumble) I don't recover it as quickly as I used to...sometimes not at all, which can be embarrassing but, fortunately, is fairly rare. Last August, my wife and I visited DisneyWorld® in Orlando, Florida and I went on a lot of fast rides, including Space Mountain, with absolutely no ill effects. After that, my wife (my biggest supporter all through my AN experience) said "you must be fully recovered, now". I am - and I'm grateful, every day. :) I trust you'll have a similar outcome to your AN experience.
Jim
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HI Steve-
Just wanted to give you a welcome and add a few comments. Like Brian said, size isn't necessarily an indicator of symptoms. My AN was 2.4 when I had it removed and the only symptoms I had were some hearing loss in the AN ear, and some balance issues (which I mistakenly attributed to being 52 - ha!). Others with small tumors have had far worse symptoms and some with larger tumors, far less symptoms. Really has to do with location, location, location.
Also, as Kay said, facial nerve damage is more likely if the tumor is "sticky". My surgical report described the tumor as "very sticky" (I guess that is a highly technical medical measurement ;D) and I did have pretty severe facial paralysis initially. At 8 months post op, my smile is almost back to normal. The surgeons should have nerve monitoring set up during surgery which allows them to know if they are stressing the facial nerve. One more reason to make sure you have a treatment team with LOTS of AN experience!
Doesn't sound like you will need to travel too far from home to find a good treatment team, but if you find yourself needing to travel as far as NYC, I can recommend the Golfinos/Roland team at NYU; and there are several other highly experienced medical teams in NY also. You are in a good part of the country for this - oh, what I can't believe I just said that! :P
Let us know what you learn.
Debbi
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Hi Brian,
Thanks again for the feedback. With retrosig, did you loose all hearing or was any of it saved? As Kaybo points out, Jim had an interesting approach in his situation that seemed to work out favorably in terms of minimizing additional nerve damage. He didn't mention hearing, but I will hold out hope that at least some of it returns. I went from no symptoms at Christmas time to full blown symptoms now, including 100% hearing loss on my right side. That seems to be a very short period of time.
Which of the surgical removals requires the smallest incision? Some pictures of the big "C" cut in back of the ear is quite frankly pretty scary. But then again as you probably say in Texas, let's get 'er done! So I'm trying to keep the full court press on a move along as quickly as possible to a decision on the appropriate process.
Jim, I just read your late addition as well. I was wondering about your hearing, and that's damn shame to loose it completely. I'm just hoping that I didn't wait too long as well. I've probably had this for 2-3 years since I remember having a period of imbalance and slight hearing loss after a biking accident that took me about 8 months for recovery (broken shoulder blade, ribs, etc). The balance came back when I was back training hard on the bike, and so like you, I just brushed it off. This time, I knew something was wrong with these symptoms coming on so strongly and immediately. I look forward to meeting Dr. Goodrich soon along with others.
Have a great weekend everyone,
Steve
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Hi Seal,
I am a New Englander, located in NH. I go to Mass Eye and Ear, Dr. McKenna (which many of us are patients of his). If you have surgery, they team up with Mass General, both excellent places. I have been in watch and wait since July and doing research since. I still don't know what I will choose for treatment but I do know for my size AN my symptoms are not good. I wish there was a simple answer but it is just not that cut and dry when you talk about the head. I know AN's are space occupying lesions and there is relatively no space in the brain for any weird growth, all space is accounted for so they do cause a ruckus no matter what size. Good luck with your journey and decisions and definately come to New England brunch, it really is fun and validating to be around people who know what you are going through.
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Welcome to the forum. If you can make it to one of the Worcester brunches, I highly recommend it. I went to my first one a couple months before my surgery it was so reassuring to meet everyone and talk to others who'd been in my shoes.
I had surgery in Sept 2006 through Mass Eye & Ear/Mass General in Boston for a 2.3cm AN. There are also several options in the Boston/NE area for treatment with radiosurgery in addition to MGH. My kids were 4 and 1 at the time of my surgery (now almost 7, almost 4, and #3 on the way!) so I totally get your concern about being there for your kids. My personal story is that I lost all hearing on the AN side with the surgery (it was 90% gone pre-op and I chose translab so I knew I'd be deaf coming out), but otherwise have no residual effects. I sometimes lose my balance if I'm exceptionally tired, or if one of my sons comes barreling into me! :D I have had no facial nerve damage (though I'll notice slight tingling if I let myself get overtired - I think of it as my early warning system that I need sleep!).
My understanding is that's it's very unusual to recover hearing that's been lost, unfortunately. Though I can hope that I'm wrong. Balance is easier to recover because your other vestibular nerve and brain will work quite well together to compensate for what's been lost so that many people feel no different. That's how it is for me.
Of course, as everyone will tell you, no one can make any guarantees about what will happen to you - either positive or negative. Your job is to do thorough research and make a decision about treatment (including whether or not watch-and-wait is a good option) that's right for you. The rest is out of your hands.
Good luck! Keep asking questions!
Katie
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He didn't mention hearing, but I will hold out hope that at least some of it returns. I went from no symptoms at Christmas time to full blown symptoms now, including 100% hearing loss on my right side. Which of the surgical removals requires the smallest incision?
Hi Steve, and welcome to the forum. As I live in the Pacific NW, I am no help on NE doctors.
In answer to a question Brian raised about why is hearing so sensitive, I will relate a little of a discussion on the subject with my ENT. First, hearing is a sensory nerve, which are more sensitive to damage than motor nerves like the facial nerve. They tend not to grow back or reconnect once they are harmed. Hearing is also sensitive because of blood flow to the little hair cells in the cochlea, the key to hearing in the first place. Any disruption can lead to hair cell death and loss of cochlear function, so you can be deaf even with a perfectly good hearing nerve. The blood vessel for the inner ear passes through the IAC canal, along with all those nerves, and is often hijacked by the AN, as well as getting squeezed by it. They don't call it an acoustic nueroma for nothing.
In general, if you have lost 100% in the AN ear, you are unlikely to get back anything useable, if anything at all. If it was a sudden hearing loss, you might ask a doctor if a steroid treatment right now has any chance of restoring some hearing, before you do anything else.
Facial nerve preservation then becomes the main objective. Surgery has the advantage of also taking out the AN side balance nerve, so you just have to adjust to working with one good nerve. The other option is radiation, which has a low incidence of facial nerve issues, and those are usually temporary ones arising from swelling in the following months. It doesn't take out the balance nerve, though, and sometimes people have trouble with a leftover dysfunctional nerve. At 2.4 cm, you also have to consider possible swelling issues with respect to the brain stem itself.
So you might end up with one of those "C" shaped incisions yourself. They look impressively scary at first, but by all accounts, they heal right up and vanish from sight pretty quickly. Not really anything to worry about. I like Katie's last line - do your research, make a decision, and then accept that at that point, it is out of your hands.
Steve
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Hi, Steve and welcome.
I'm not in the Northeast, I'm fairly close to Chicago, but I did have retrosigmoid. I lost all the hearing in my AN ear though, and am now SSD (single-sided deaf). I had a BAHA implant nine months after my AN surgery, and it's been a big help.
All the advice you've received so far is excellent - I can't really think of anything to add. However, I would like to suggest that you contact the ANA and ask for their informational brochures - very good and very simply written and easy to understand.
Good luck and don't hesitate to ask us anything,
Jan
Oops! Forgot to say that my retrosigmoid scar is very close to my ear and became very faint about 8 - 9 months post op. If you didn't know I had brain surgery, you'd never notice the scar.
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Oops! Forgot to say that my retrosigmoid scar is very close to my ear and became very faint about 8 - 9 months post op. If you didn't know I had brain surgery, you'd never notice the scar.
I second that ... its easy to get caught up on worry about scar size , where it was, my hearing .. forget it about it !!!... you cant see mine at all now! I do have a bald spot for the BAHA hearing aid, but frankly ... I dont care.. I feel the same it not better than before this all happened .. and thats want really counts... whats important is getting the right doctor... the right surgery....
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whats important is getting the right doctor... the right surgery....
Steve -
this point can't be stressed enough. Do your research and find the best doctor you can. Experience is key.
Jan
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HI all,
You people are great, especially reading some of the other's who are having much more stress at the moment than I am. This has been way more support than I ever expected to receive or witness. Thanks.
My one question this evening is about facial nerves. I have control over my muscles to smile, etc, but I have no surface feeling on the right side of my face, nor in my mouth or throat. Is this a seperate nerve from the auditory nerve or all part of the same one? I even have no skin feeling all the way back into my scalp on the back of my head!! My most frustrating problem is that i don't feel where my tongue is , and I've already bitten it badly several times this week just eating. All my symptoms seem to be getting worse by the day...............
Steve
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AN affects people differently. For me I started having a tingly feeling on the top right side of my lip. My eyes twitched and it made it seem like the whole room would jump to the right and then left about 3 or 4 times a minute. I even saw an eye Dr. She could not be sure but attributed these issues to my AN.
After my surgery I have not had any eye twitching symptoms whatsoever. I saw my Dr. last week and told him that the tip of my tongue felt like I had burned it and made everything taste awful. He said that was due to the nerves that were was close to where my tumor was. So I would not be surprised if the AN was causing your issues. I would contact your Dr. and let him know what you are feeling. Knowing this information may help them get an idea of what nerves your tumor is affecting.
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Steve,
Sorry, I've been busy with 2 sick kiddos the last few days so I wasn't able to respond to your post. I'm glad others jumped in and helped. On to this one:
[...]My one question this evening is about facial nerves. I have control over my muscles to smile, etc, but I have no surface feeling on the right side of my face, nor in my mouth or throat. Is this a seperate nerve from the auditory nerve or all part of the same one? I even have no skin feeling all the way back into my scalp on the back of my head!! My most frustrating problem is that i don't feel where my tongue is , and I've already bitten it badly several times this week just eating. All my symptoms seem to be getting worse by the day...............
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I believe that your hearing nerve is different than your facial nerve. My understanding is that where the tumor grows, there are your balance nerve, hearing nerve, and facial nerve all relatively close together. Hence, this is why so many have varrying degrees and temperment of symptoms. Like Debbi, I had tinnitus and hearing loss but no other symptoms (and my tumor was 30mm..on the large side). It's more a product of WHERE it is than how big it is. It COULD be affecting 2 nerves at one time or all 3. It all just depends on WHERE it is in relation to those 3 nerves.
The good news, if any can be found in all of this, is that damage to your facial nerve is less likely to be permanent than damage to your hearing nerve. As Steve pointed out, there are many factors that go into "hearing" than just the nerve and damage there is more often than not permanent because of ancillary damage that damage to the nerve causes.
Others are exactly right in that it's more important that you select a doctor that's dealt with AN's a LOT (very experienced), research a LOT and select treatment that's best for you, and then accept the fact that whatever is left of symptoms after treatment is something that you can attack after the first goal of removing/killing the tumor is achieved. If you end up being SSD after treatment, there are options available to you. If you end up with eye dryness, there are options. Etc.. The first focus must me on doctor selecting and treatment choice after consulting with various doctors and research about what's available. It's most important that you select a doctor experienced in dealing with AN's and a treatment choice that's best suited for you and size/location of YOUR tumor. Everyone is different so this is a personal choice based on several factors. All we can do is lend our support and explain why WE made OUR choice and what affected OUR choice. Do what's best for you.
Does that make sense?
Regards,
Brian
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Seal:
The short answer to your question is 'yes'. To the best of my knowledge (I'm not a doctor) the nerve that affects sensation in the face - the 7th nerve - is separate from the 5th nerve that controls the facial muscles that allow us to smile, blink, etc. I could be mistaken as I haven't studied these things as much as some other, better informed AN patients have but my point, concomitant with Brian's, is that an acoustic neuroma can affect different nerves with no relation to the size of the tumor, based on the location of the tumor. Hence, the relatively wide variety of pre-diagnosis symptoms often presented and why, if at all possible, an MRI scan is the best way to verify the presence of an acoustic neuroma and get a fairly good idea of it's location.
If your facial numbness symptoms are increasing in intensity, the the tumor is most likely growing. That will require that it be addressed, so keep researching and definitely be prepared to make a treatment/doctor/facility decision in the near future. Procrastination can only invite a longer recovery and possible permanent damage. I don't want that to happen any more than you do but, without being panicked and hasty, you have to decide how you'll address the AN before it does too much damage. Maybe you won't have to make that decision today or tomorrow, but soon. Meanwhile, please take the time necessary to consult with doctors and whatever else is necessary even if it may be inconvenient. It's worth the time spent. I wish you success and a good outcome. :)
Jim
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Thanks Jim & Brian. I actually will be driving tomorrow afternoon south on Rte. 95 to see Dr. Goodrich in New Haven; this will be the first of several I suspect. I have also sent a CD copy of my MRI to my cousin, the ENT at Geisinger Institute to get their take on the size, location, and possible best way to go after this tumor. As I get more names, I will be making more appointments to see different doctors. I will probably try to narrow down the treatment path soon, and hopefully, I can then focus on choosing the best surgeon for the job.
I can now snap my fingers next to my right ear and hear nothing. So I guess that the hearing loss will be a forgone conclusion. On the bright side, that will probably make me less hesitant to choose more agressive surgery to get this done promptly and to minimize further damage to other nerves as you mention.
Best regards,
Steve
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Just an aside, send a copy of your MRI CD to House. They will give you a free phone consultation and recommendation. If you have no interest in going to LA to have a surgery (some aren't) at least it will give you another professional opinion about treatment choice.
Regards,
Brian
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Sorry Brian, but what or who is House? Right now, I'd be happy to jump on flight to L.A. just to get away from the ice and snow for awhile!
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This is blatantly stolen from one of Kate's posts:
"From the House Ear Clinic Website:
House Ear Clinic CONSULTATIONS
If you, a family member, or someone you know has been diagnosed with an acoustic neuroma, you may consult with a doctor from the House Ear Clinic team. We will be happy to review the MRI scans and audiogram and speak with you by telephone (we must have a copy of the actual MRI film, reports are not sufficient by themselves).
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"
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Very cool! Thanks Brian.
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My one question this evening is about facial nerves. I have control over my muscles to smile, etc, but I have no surface feeling on the right side of my face, nor in my mouth or throat. Is this a seperate nerve from the auditory nerve or all part of the same one? I even have no skin feeling all the way back into my scalp on the back of my head!! My most frustrating problem is that i don't feel where my tongue is , and I've already bitten it badly several times this week just eating. All my symptoms seem to be getting worse by the day...............
Steve
I missed this thread, but I think I can answer your questions, since I have the same symptoms exacty. The cranial nerves usually involved when you have an AN are the 5th nerve, or trigeminal, which controls sensation, the 7th which is the facial nerve, responsible for movement, and the 8th which is the vestibulocochlear (aka acoustic). ANs typically grow on the vestibular (balance) branch of the 8th nerve. The facial nerve runs very close to the 8th nerve, and is almost always involved. However, it can be stretched quite a bit without causing any symptoms, that's why facial weakness prior to treatment is usually rare. The 5th is what's causing your symptoms - numbness, metallic taste and I bet you are experiencing dry eye as well. The trigeminal has three branches, some or all may be affected. It is usually affected when the AN has grown big enough in the CPA, so that it impinges on its root entry to the brain stem (I copied this from my radiologist report 8)).
My symptoms progressed fairly quickly from metallic taste to numbness around the mouth and then extended all the way to the scalp as you described - all this in a couple of month. From what I understand once the AN starts touching the trigeminal nerve, the symptoms get worse fairly quickly.
Hope this helps,
Marianna
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Hi Marianna,
Thanks for the info. Unfortunately, my symptoms have progressed from almost nothing to where I'm at now in a matter of weeks. You hit the nail on the head so to speak with all my current symptoms including the now increasingly dry eye problem. I'd be curious to know why you selected GK as the treatment instead of going for immediate removal and hopefully faster relief of at least part of the symptoms?
Steve
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Steve,
there were several reasons why I chose GK over surgery, I summarize them below:
1. Having 2 young kids, a very busy job with lots responsibilities and not much help around from extended family, it would be very difficult to cope with a long recovery time, and the various possible after effects that I might possibly face.
2. Lack of doctors specializing in ANs in my town, meaning that I would need to travel further to seek surgery and treatment for any potential post-op complications. Couldn't figure how all this could be juggled with family responsibilities.
3. (and more relevant to your question). I'd rather live forever with my facial numbess, than having to deal with paralysis, not being able to close my eye, vertigo, headaches etc. And there is no guarantee that the numbess would resolve after surgery either, I might say that there is more of a chance that things can become even worse if the nerve is damaged during surgery. In the case of the trigeminal nerve, trigeminal neuralgia can cause really debilitating pain if the nerve gets aggrevated.
Honestly, I don't find the numbess being a problem at all - I am actually very grateful that this is my only problem and it certainly does not cause any "quality of life" issues. The dry eye can be dealt with easily with eye drops three times a day. The metallic taste (which is actually getting better) is triggered by foods that are very sweet or salty so I avoid them (good habit!). And I try to chew slowly, so that I don't bite my tongue (again, good for the stomach).
As for the hearing, I know that it is a big deal for many people. I have pretty much accepted the fact that having an AN will probably lead to hearing loss eventually. I only had minor hearing loss (about 10-15 db, with 100% word recognition), and it is holding steady after GK. I will consider my self extremely lucky if I retain some hearing, but this was not my main preoccupation.
Your AN is very similar size as mine (mine is larger), so I understand how you are going through the same anxieties regarding size/treatment choice etc. Feel free to PM me if I can be of any help.
All the best,
Marianna
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Marianna,
Thanks for the detailed reply. Since we are similar in terms of size and issues, I was curious as to the thought process behind the decision. I just met with the first doctor today. BTW, Jim ---- Dr. Goodrich says hi ! Anyways, I guess I do not have a really large one at 2.2mm , but the bad news is the placement. Where alot of these tumors tend to head towards the spine, mine instead is heading upwards and pushing against the brain stem. Evidently this is why my issues have gone from zero before Christmas to complete deafness in the right ear, lack of balance, and complete loss of feeling in the right side of my face, mouth, and throat. According the Dr. Goodrich, I would normally be a perfect candidate for GK like you. However, the placement of the tumor is causing a rapid deterioration of all the nerves in that area with more pressure being put on the brain stem.
So it may end up being a similar case to Jim Scotts treatment. They may go in for a removal of the bulk mass of the multi-lobe tumor to give immmediate relief of pressure to the brain stem. Then there would be follow up radiation treatment to kill the rest of the tumor and keep it from growing back. Whatever the final decision is, the clear thing is that we have to act quickly to stop the pressure from growth due to the unlucky placement of my AN. The other interesting thing was that the doctor mentioned that I've probably had this for 10-15 years which is how long it takes for it to grow until the symptoms become evident.
Of course the hearing loss is a done deal. He did hold out some hope for me however to see a return of feeling to the face once the tumor is debulked and the pressure is taken off those other nerves. One meeting down; many more to come I'm sure..............
Regards,
Steve
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Steve,
location, location, location is everything and it is a determining factor when chosing treatment. This is why there is no absolute cutoff with radiation and every case is judged individually. If brainstem compression is such a serious issue then the doctors will definately want to decompress it. In my case I was told that the brainstem compression was not substantial. Rather my AN was growing backwards and rather than the brain stem it was compressing the 4th ventricle (serious compression may cause hydrocephalus because it obstructs the flow of CSF). But anyway, I guess the absence of severe brain stem compression is what made treatment with GK possible.
The key here is getting as many opinions as possible, so that you can make an informed decision. From what Jim has said many times, you are in good hands with Dr. Goodrich.
Marianna
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The other interesting thing was that the doctor mentioned that I've probably had this for 10-15 years which is how long it takes for it to grow until the symptoms become evident.
Seal -
although you sound surprised by this, ANs are typically very slow growing. I don't know if I recommended it to you before or not, but you should contact the ANA and ask for their literature. It explains a lot about everything "AN".
As for the hearing loss, don't let it worry you too much. As Brian (Pooter) mentioned, there are options for SSD - if you find you just don't adjust well to it. I chose a BAHA implant and am very happy with the results. Others have chosen the TransEar and they are happy with their choice also.
BTW I know you are still researching doctors, but IMO Dr. Goodrich would be an excellent choice. He gets my vote.
Just my two cents worth,
Jan
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BTW I know you are still researching doctors, but IMO Dr. Goodrich would be an excellent choice. He gets my vote.
I have to agree with that; he seems to be very sharp.
And if Jim is any indication, being treated by Dr. Goodrich apparently has the added benefit of enriching your vocabulary. :D
Steve
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Well, I have more opinions weighing in on my options as the MRI CD copies are finding their way into different hands! Its clear now that Gamma Knife is not an option for me. I already have complete hearing loss, and its not coming back. So the clear choice will be for removal. The biggest concern left now is how to accomplish removal without impacting or minimizing impact to the facial nerve that it is pushing against. At the rate of growth lately, it is obvious that its a "sooner than later" situation.
Has anyone here been have any feedback on the ENT Medical Surgical Group at Yale headed by Dr. Kveton?
Steve
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Steve,
I haven't heard of those doctors specifically, although you can use the "Search" function of this website and put in "Kveton" and see if anything pops up.
I would agree that if you're seeing new symptoms and the ones you have seem to be getting worse that sooner rather than later is definitely called for. I realize that the tumor is near the facial nerve, therefore explore the option with you doctor to "debulk" the tumor (leaving some attached to the facial nerve) and use radiation (GK?) to kill that later. Unfortunately, they won't know how "sticky" the tumor is until they get there during surgery. It's very possible that it won't be "sticky" and it will just peel away from that nerve without any further damage. I certainly hope so, but talk to doctors about the option of "debulking" the tumor in favor of further damage to the facial nerve.
Most reputable doctors will monitor that facial nerve during surgery so they know if they're ticking it off or not. Facial nerve monitoring appears to be the norm for this type of surgery, but make very sure that you're doctor (whoever you select) does monitor that nerve during surgery.
Kindest regards,
Brian
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Jim ---- Dr. Goodrich says hi !
Steve:
I'm glad you were able to consult with Dr. Goodrich but sorry to learn that your AN is growing toward your brainstem and causing you the myriad problems you've encountered recently. Dr. Goodrich is correct when he says that - normally - a 2.2 cm AN would be a prime candidate for radiation. One other person I referred to Dr. Goodrich had a tumor approximately the size of yours. After a consult, Doctor Goodrich ruled out surgery for him, secured an immediate appointment with the radiation oncologist for the man and even escorted the fellow to the other doctor's office (it was in the same building). Dr. Goodrich is clearly not 'possessive' of patients and definitely not 'cut-happy' as, unfortunately, some surgeons are.
For better or worse, you do seem to be in a situation similar to mine when I presented to Dr. Goodrich, with the notable exception that my AN was 4.5 cm. During my surgery, when the doctor opened up my skull, he later told me that CSF literally 'gushed' out due to the fact that the AN was taking up so much space in that tiny area and compressing it. He was surprised my symptoms were not worse than they were. Dr. Goodrich also mentioned that the AN had likely been growing - slowly - for over a decade.
If you end up going with the debulking + radiation approach, it should work out well. The debulking almost immediately relieved all of my symptoms (loss of taste, rapid, unwanted weight loss, slight one-sided facial numbness, disequilibrium, severe fatigue). Although the follow-up FSR (3 months later) was tedious (26 days @ 20 minutes per day strapped to a metal 'bed' with my head bolted onto a rigid,'mask', making it unmovable, while the Linux 'zapped' me in short bursts) I suffered no ill effects, save boredom. As my signature shows, both the surgery and radiation were successful. My symptoms never returned, I have full function of my face, eye and tongue, I regained just about all of my balance function and suffered no complications from either the surgery or the FSR. Like you, my hearing was a 'lost cause', based on the fact that the tumor had effectively compromised the nerve to the point that it became non-functional and cannot be reanimated. I cope pretty well with the SSD aspect and, fortunately, the hearing on my functioning ear is excellent. One learns to adapt. However, there are Bone Anchored Hearing Aids ('BAHA') that can alleviate some of the hearing loss, should you opt for one in the future., as many do, with much satisfaction, I might add. Jan ('leapyrtwins') is an enthusiastic BAHA-wearer and could give you lots of information on it's efficacy, should you be curious at some point.
I'll be interested to see what other doctors have to recommend as you go through the consultations. I certainly hope you end up with a successful outcome, whatever physician you chose. Admittedly, I'm a bit biased toward Dr. Goodrich, based on my high regard for his surgical skill and overall knowledge of acoustic neuromas gained from his decades of experience operating on them and, equally important, his caring, professional attitude and respect for his patient's concerns. Of course, I have to add the caveat that my good outcome cannot guarantee yours - or anyone's - but I'm confident that, should you choose Dr. Goodrich and his team, you'll certainly be in good hands. I wish you well as you continue your journey toward a final decision. :)
Jim
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Hi Jim,
Thanks as always for your detailed responses. I asked Dr. Goodrich if there was any extra charge for the vocabulary enhancement procedure that Leapyrtwins mentioned earlier. He just said it comes at no charge!!
Anyways, I've already received feedback from my cousin at Geisinger. His team came to the same conclusion as well that radiation is NOT an option, and that due to my "youthful" age, the only real option is to remove it and get on with life. He has refered me now to Dr. Kveton. So we will get yet another opinion, and I'll shift through those comments and try to get closer to making a decision. I have an extra CD, and I'm thinking about sending it out to House just to see what they say. However, I'm not inclined to fly to L.A. for treatment when I believe there is sufficiently excellent care right here in New England. I'm sure another opinion would not hurt either. This seems to be going so much slower than I would like.
I am also getting more concerned about the post-op recovery. I am president and owner of a small mfg company with about 15 employees. I can't imagine this coming at a worse time, but that's how life is I guess. Hopefully, I will not be too out of things for too long. I'd like the impact to the business to be a small as possible, but I've read a few posts about some individuals having serious problems afterwards and not returning to work for weeks or even months. That is giving me more concern quite frankly than the surgery itself.
Thanks again, and have a great weekend.
Best,
Steve
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Seal, I have read your posts and must say I am a bit jealous, watch and wait is unnerving, I think if the Dr. said lets go and take it out in the first place, I would be done and getting on with my life. Instead I deal with the symptoms everyday and just wait....
Anyway if you are the owner/president of a company than you can come and go as you feel up to it, so it might not be that bad, alot of people do quite well after, getting tired seems to be the big thing. Your journey is an interesting one, keep us posted and best of luck for a complete recovery.
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I asked Dr. Goodrich if there was any extra charge for the vocabulary enhancement procedure that Leapyrtwins mentioned earlier. He just said it comes at no charge!!
Hey wait a minute ??? I didn't say that - Steve Gerrard did - so I can't take credit - I can only wish I'd said it. It was a very good line :D And just for the record, I'm not picking on Jim here, I truly enjoy his vocabulary and I'm proud to say that I've learned several new words - and their definitions - from him. Many thanks, Jim.
Now, back to the topic ;D
Seal -
don't let the time off of work concern you too much. Most docs say 6 weeks recovery time, but everyone is different and everyone's job is different. Depending on how you feel and what you do at your job, you may be able to work part-time or work from home long before you are fully recovered. And although you are president and owner, I'm betting you have at least one very capable employee who can handle things for a short time in your absence.
I'm an accountant - obviously a desk job - and I returned to work part time @ 2 1/2 weeks and full time @ 4. I don't have a physically taxing job, so that probably helped. I also had the luxury of having a family member driving me to work so I didn't have to deal with that. My biggest issue was fatigue - which lasted long past the 6 weeks. IMO returning to work within a reasonable time frame is more the norm than the exception.
Jan
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Hi Jan,
Thanks for the support. Sorry about the misquote as well, but I'm finding that my brain is not working too well these days. I'm starting to get stabbing pain in back of the ear on the AN side, and my facial numbness is getting pretty severe. I feel nothing on that side nor in my upper and lower teeth on the right side. Does any of this numbness go away with the surgury or is this the future for me too along with loss of taste? I know that the SSD is a done deal, but I'm finding this facial, mouth, & throat numbness is really getting to me. The balance continues to go down hill as well, and fatigue is becoming a pretty big factor. I think I would check myself in for surgury tomorrow if it was all set up. Things are getting progressively worse by the day now it seems. Well there is my whine for the week. Thanks for listening.
I'm actually trying to work out an arrangement asap to cover for me while I'm down. With this economy tanking though, the AN issue could not have come at a worse time. The stress was already high before this all started.
Steve
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Seal,
I was just wondering about the severity of your symptoms and their fast progression. The rate at which things keep cropping up may not be related to actual growth of the AN itself, but rather by what is called "tumor related edema". This is inflammation of the surrounding structures, caused by the presence of the tumour. For example in my case this caused sudden hearing loss (a month after I was diagnosed). Symptoms of this severity may be relieved by a course of steroids, which relieve inflammation- if you find that your symptoms are becoming unbearable, you may want to ask your doctor about this. My hearing loss was reversed after I took the medication, and I also found some relief from the dry eye (which returned afterwards).
I have another question too, when say you don't have feeling, do you mean an "altered" or "reduced" sense of feeling, or no feeling at all? I have read about many people having about reduced feeling (also called hypoaesthesia or something like that in medical terms), but complete loss of sensation? This must be very annoying.
I hope you will find your way quickly out of this mess.
Marianna
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Hi Marianna,
Thanks for that feedback on the steroid treatment. I'll be meeting the next doctor one week from today, and I'll be sure to bring up that possibility. It would be wonderful if I could get these symptoms under control before proceeding with the surgery. On the feeling question, I would describe it as if my entire mouth, throat, and right side face (even the scalp) is numb to the touch. I could cut my skin with a knife and not feel it, but I do seem to feel pressure when pushing on it. I still have control over smiling, closing that right eye, and moving my cheek. So the facial nerve doesn't seem compromised, just a bit deadened. Its as if the right side got an overdose of novacain from the dentist and has shut down my feeling on that side. Strange stuff for sure.......
Steve