ANA Discussion Forum
General Category => Inquiries => Topic started by: another NY postie on July 27, 2009, 08:41:18 pm
-
Hello. I am still struggling with my decision and now I have received information that I don't really understand. I knew my AN was deep in IAC, but I just consulted with Dr. Roland/NYU and he said if I had some spinal fluid between tumor and cochlea, my chances were better for hearing preservation-that is one of the indicators he looks for in terms of potential hearing preservation. Unfortunately he did not see any fluid which I guess means that the AN is pressed up against my cochlea.
Before I saw him, I have seen Dr. Choe, Dr. Selesnick, Dr. Smouha (all neurontologists) and Dr. Post (neurologist). Tomorrow I see his partner, Dr. Golfino. (I know this sounds like overkill with the doctors but each one seemed to add something and it took up until the 4th appt to even hear about getting ABR/ENG).
Dr. Roland is the first person to even mention this as an indicator. Has anyone else heard this from their Dr.? I am trying to figure out what exactly this means. Oh, I also am consulting with Dr. Brackmann and will ask him tomorrow... I am so depressed and confused by this.
-
It is so easy to get frustrated, confused, and overwhelmed! You are in the middle of trying to get some information about your condition, and chances are, no two drs. will give you the same story Hang in there! What you are doing is important because you will not be happy making your decision unless you feel like you have covered all your bases. I sent my MRI all over the country before I finally made up my mind, and I was in turn depressed, angry, and confused. Once you have a plan of action you will feel better.
I have not heard about the SF thing. That is an interesting signal for hearing preservation. Maybe someone else on the forum is familiar with that.
Good luck and don't lose heart. We are here to hold your hand through the process.
Priscilla
-
I never heard of this, but you might want to ask one of the other doctors you consulted with. Since Dr. Post has such a good reputation for hearing preservation, if anyone could offer some feedback it would be him. If I were you, I'd give him a call. I think he would be willing to get back to you on that if he has any insights at all.
Also, I suspect that if the other doctors are familar with this, they would have built in right into whatever probabilities they gave you for hearing preservation when they saw you, perhaps without explaining all the details.
What % they saying?
Wayne
-
Since you mentioned seeing Dr. Choe, did he give you his e-mail address? He is great about getting back to you very quickly with answers to any questions and always got back to me within six hours but usually even less. He had me go for another MRI last May (my initial MRI was in April) and said he suspected that my AN was going into my cochlea because of my sudden hearing drop. It turned out that it wasn't, but it was right up against it and really pressing on it. I didn't ask what this meant since he told me there was virtually no chance of restoring or saving any useful hearing (it was basically gone anyway speech discrimination was down to 24%). At that point we went from him doing middle fossa to translab. If you'd like his e-mail address, I'll PM it to you. He answered questions for me for two months before I made a decision and almost up to the date of my surgery.
Wendy
-
Hi there! Your talkin to some of the best AN doctors in the world. I know its all new to you, please just hang in there and eventually youl`ll come out of it with what you need to know and do. I`m presently wait and watch with doctors Roland and Golfino`s. I think they are great covering every option according to each case. VERY EXPERIENCED! Best wishes to you, stay on board here with so many nice people to talk with and help you in your journey. Mickey
-
Today, Dr. Golfino recommended radiation(!??!?!??!). Guess he didn't speak to Dr. Roland. I told him that was the only thing I had ruled out and he said he usually gets it right with what people would be most comfortable with, so he was surprised (said something about my obvious obsession with research/details:). Threw me for a loop. Did not leave there feeling any better. Both he and Roland are giving me now 50% for hearing preservation because of the no SF.
Dr. Roland said this about SF between tumor and cochlea
We think, although not statistically proven, that when the tumor is impacted on the cochlea, there is a lessened chance of saving the cochlear artery in the internal auditory canal and therefore saving hearing
Dr. Golfino also used the word "impacted" for my AN. Said it was as deep as it can possibly get in canal.
So I am feeling "glass half empty" right now. I feel like the 50% really means it is not going to be saved. Has anyone been given a 50% chance out there and have had it saved?
Mickey, how big is your AN? I wonder why no one is telling me to watch and wait except Dr. Post.
-
What a totally psycho day! I just got off the phone with Dr. Brackmann who just reviewed my ABT/ENG. He gave me 75% chance!!!! Then we discussed this issue of SF. He said it does affect the probability but for him, it would only lower it to 70% and he also said you can't tell if it is impacted from MRI.
Wayne, I loved Dr. Post but he only does retro and based on my research and speaking with some DR. that do both, it really looks like my AN is too deep for retro - my best bet is middle. I think that gives me the best odds.
Wendy, I also liked Dr. Choe but he told me that he only does 8 AN a year so that worried me. If I end up going to CA, though, I will use him, I think for follow up or Dr. Smouha.
I think I need to go for a long walk to clear my head!
-
The discussion of spinal fluid didn't come up in any of the discussions when my husband consulted. He saw some of the doctors you saw in New York and consulted with Dr. Friedman at House. His last consultation was with Michael Sisti at Columbia Presbyterian. Dr. Sisti is the only one of the doctors who feels there is a chance to save the remaining hearing. All of the doctors we saw and talked to are great, but something clicked with Dr. Sisti. If you want to get another opinion to mix things up, you might want to consider seeing him.
-
Thanks Mandy, I did find him and put him on the list but then started feeling like I overloaded myself with two many opinions...so I find it interesting that they are the only ones who seem to check this...maybe it is particular to my AN location although Dr. Brackmann didn't bring it up until I asked him about it.
-
Hi there! My AN is .12mmx.06mm. Every case is different. My main symptom is tinnitus with a very slight hearing loss. I would have never even gone for MRI if it wasn`t for a sharp local ENT. God knows how long I`ve had this now pushing 61 yrs. old. Soon my yearly MRI is coming and basicly play it year to year so far with with no change. (2nd yr.) Much of this logically figured out by myself with the graces of my doctors. There are some out there especially as you get older who never need intervention. Once again every case is different depending on so many things. Take your time and evaluate and I`m sure you`ll be OK. Much better options and ways of doing things now. It will all be OK. Best wishes, Mickey
-
I am 46 ,Mickey, so maybe that is why no one seems to want me to watch and wait...said it is obviously changed since I had hearing loss that was sudden (but slight -15%)...I asked Dr. Brackmann about watching vs going for it and he said watching was fine as long as I wasn't concerned about preserving hearing. I am fine to go for it to save hearing but I can't seem to wrap myself around (ie. accept the idea) that I could very easily wake up SSD. I am a middle school teacher of French and I am so afraid that if I am SSD, I won't be able to do my job. Listening and hearing is what I do! I know I can't control this and it is really out ofl my hands once I decide what to do...I just wish I didn't have to make all the decisions!
-
Yes, I can see what your going thru! One thing which is very much in your favor is the size of your AN (tiny). Whatever you decide just as long as you stay on top of this your AN will never be treated when its anything but small. Decisions! Just relax as best as you can and follow your imput and then your heart. At least thats what I do. Your gonna be OK, Mickey
-
I know it's difficult in making the decision but it's better to make your own informed decision rather than having me or anyone else make it for you. I know, I know...I and you and Mike wish we didn't need to make such decisions but unfortunately there is nothing we can do to change the fact that we have (or had) an AN. I've known Mike for almost two years, we share the same hobbies and doctors, we also share some of the same friends met via this AN experience. Once you make your decision you will feel much better, it's making the decision that drives each of us crazy.
Good luck and God Bless,
Joe-
-
Hi
I just had surgery on July 1st and I was given a 50% chance of preserving hearing and I most definetly did! I havent had my hearing test yet but I can hear on the telephone and it almost seems a little bit better than before surgery so it is absolutely possible. They did not mention anything about spinal fluid so I can't address that part but I was given the same 50%.
My tumor was directly next to the cochlea and when DR. R & G first talked to my husband after the surgery they didn't think they had been able to save the hearing because of the proximity but lo and behold they did.
When I consulted with Dr. Golfinos he also told me initially that radiation was a good option if that is what I was comfortable with but with it so close to the cochlea he really wanted to know my current hearing level to determine if hearing preservation surgery was a better possiblity. My speech disrcrimination was 92%.
I just wanted you to know that 50% is definetly possible.
-
I find your case a little puzzing.
Did Post say he thinks he can or cannot get to it via Retro?
I think Mid Fossa almost always give you the best chance of hearing preservation, but perhaps because of location it might be better for you either way. Dr. Galfinos offered me that option also. However, for the slightly higher probability of hearing retention, he said there was a tradeoff of slightly higher probability of facial problems (at least in my case). That's why I chose Retro.
Galfinos gave me exactly 50% using Retro.
Post initially gave me 50%, but then upped it to 70% after seeing the results of additional tests.
Smouha, after consulting with Dr Post, reviewing my MRI, and seeing the results of the tests said (paraphrase). "Dr. Post is a little more optimistic than I am".
I came out with very good hearing.
So 50% is 50%!!!
IMHO, 50% is actually more than 50% because they don't want to raise your expectations too high and then disappoint you. It's obviously no guarantee, but it's not like you are definitely SSD. Plus, from what I gather and from my limited experience right after surgery, SSD is not quite as bad as the initial shock of thinking about it.
I recommend you get some more feedback from those here that know before making a decision (including the Baha option that would help for your work)!
Finally, I don't understand the radiation recommendation from Galfinos unless he gave you a specific reason. You are younger than me (I'm 50) and that was a primary consideration. I specifically went to see Galfinos because he does both and I wanted a neutral opinion. Dr Post admits he is biased towards surgery (as is Smouha). Galfinos gave me the pluses and minuses of both and said I could do either but was hinting strongly he thought surgery was best for me. So I don't understand the thinking or specifics in your case that would make it different. hmmmmn
By the way, I considered talking to Sisti, but i seem to recall that someone suggested to me that he's more of a cancerous tumor specialist than an AN specialst. Perhaps he's both.
-
I think Golfino pegged me as someone who would like the radiology route. I got that impression because after he explained all three options (ww, surgery, radiation) and then recommended radiation, I laughed and said that it was the one option I had ruled out. He seemed very surprised and said something to the effect that he usually always get this right about people. But he had just given me a statistic that I had 70% chance for hearing in first 5 years with gamma and then that drops down to 40% hearing by year ten. He said since I was so interested in hearing preservation, he thought the idea of preserving my hearing for 10 years would have sounded good to me. Then he said he wouldn't recommend radiology for a 40 year old, but over 41-55 is in the gray area. Being only 46, I just couldn't process what the heck he was saying exactly. It seemed contradictory and his partner had just sent me an email the evening before telling me he still felt that the AN should come out.
My husband, the cynic, thinks all the drs are trying to sell something - be it surgery, gamma, etc- and that he was telling me what he thought I wanted to hear but missed the mark.
I don't know about that...I just know it left me very,very confused. I know we aren't supposed to swear on the site, but suffice to say that my speech was not too pretty yesterday.
And then Brackmann gives me 75% chance. How could it be that different? These are all top guys....
I am glad to hear of you all who were given 50% shot and came out with hearing! I was thinking it really meant little hope.
The other thing is that I really don't want to go out to LA - it will be hard with kids, etc- but Brackman does about 60 middle fosas a year and Golfino says they do about 15.
Arghhhhhhhhhhh!
-
Then he said he wouldn't recommend radiology for a 40 year old, but over 41-55 is in the gray area. Being only 46, I just couldn't process what the heck he was saying exactly. It seemed contradictory and his partner had just sent me an email the evening before telling me he still felt that the AN should come out.
This is one point I'd like to dispute. I had my CK radiation done exactly 3-1/2 yrs ago, almost same age as you (mid-40's), had over 90% of my serviceable hearing going into radiation... and now, 3-1/2 yrs later, I have maintained the exact same level of hearing preservation. Now, as we know.. "individual results may vary" but fractionated radiation (done over a number of days vs. a single day treatment) tends to have higher rates of hearing preservation (again, "individual results may vary").
Bottom line... your gut will know how to guide you. If you have ruled out radiation based on what your gut is telling you... then, well, rule it out. If you have the notion that you just want the dang thing out of your head, then go with it... Your gut will help guide you, based on all info you have received from docs, from AN'ers that have been the routes... and what is best for you and your particular situation.
This is the worse part of the decision making process. You'll get through it and feel the monkey off your back once you do :)
Hang tough
Phyl
-
Phyl,
I am not disputing anyone's experience or trying to discount radiation, I am merely writing what Golfino told me yesterday - that was his statistics that I wrote down that he told me. I do not know if that is his personal statistics as he does gamma or if he was speaking in general terms. I have seen many,many people on this site happy with results for radiology. I just knew going into my appt with him that it is not what I want to do for many personal reasons, but I listened to his opinion and wrote down what he said to me.
Cheryl
-
Oh, I know. :) I am not disputing you or your research or decisions.... I found the commentary about "gray area' for the age group to be in question as I know many in the same age group, regardless of which type of radio treatment done, that have done quite well..... just as you have by your research on this site. :)
You've done absolutely fantastic in your research. You are talking to all the right folks, doing your homework and I know you will make the best, well-informed decision for you! :) Will be cheering you on regardless of what choice you make... as it's your choice and no one elses :) I know you will do what is best for you.
Phyl
-
Cheryl,
I don't know if this will make you feel better or worse, but when I was discussing radiation with Galfinos he said the same exact things. He said if I was 30 he would recommend surgery, 65 radiation, but at 49 I was in a grey area. Then he listed what he felt were the advantages and disadvantages of each with all sorts of probabilities for me to weigh (also similar what he seems to have told you). It really came down to my personal preferences about the risks, but perhaps he sensed what I was thinking when he seemed to be directing me towards surgery. Perhaps your husband is correct to some degree. When the patient is in the grey area he may try to make them comfortable with whatever he thinks they have already decided because it really is a marginal or grey area call in which he has no strong preference.
I hope you will take comfort in knowing that we pretty much all went through what you are going through right now. If you need to talk, come here. However, when I felt like I couldn't take it anymore, I didn't come here for a few days. It cleared up my head a little. Your answer will come to you and you will get through this. Take a deep breath, relax, and watch something stupid on TV to make you laugh. It will get better. :)
Wayne
-
Hi Cheryl
Your story is interesting - because it sounds somewhat similar to mine - small intracanicular tumor, good to very good hearing and sounds like you have few other symptoms (balance, headahces, etc.). I have a decent bout with tinnitus as well - not sure if you have got that too! I am 37 years old. I was diagnosed last December.
I will share my story but will keep it brief - not that I am giving medical advice, or suggesting what I am doing is right for you. I am very confident in my decision and very confident in the doctors I am seeing. That is all that really matters for me - and probably won't matter one small bit for you. Your level of research is admirable. You have spoken to some well named doctors (as I have learned from the boards.)
I am watch and wait. I had my first follow-up MRI in May - no change. I have seen an ENT (surgeon variety, not the every day office variety), a neurosurgeon and a radiation oncologist at the Gamma Knife centre in Toronto. All suggested the same thing - hearing preservation surgery is risky and gamma knife will equally take out the hearing (however, over a longer time frame). The ENT (surgeon) believes I have a very good chance to get beyond 10 years without surgery based on his research of conservative management - the sucker won't grow at all. [Stand corrected from previous posts - as soon as the tumor grows, the ENT and the neurosurgeon will recommend taking it out. I had mis-interpreted that earlier.] I will gradually lose my hearing by waiting - but after 10 years will more than likely not be SSD but will have very poor hearing. (Have learned from the team here - that any hearing is better than no hearing.) I will get hearing technology when it will be required.
So far, my hearing has been stable over the past 6-8 months but my word recognition has deteriorated in the first 6 months - I have PTA of about 25db (unchanged) on the AN (so very mild hearing loss - all at high frequencies). My word recognition (at 50db) was only 76% at my last test, down from 96% a few months earlier. The db may have been too low - but will see what happens in another 6 months.
So, again, this is the right approach for me, maybe not for someone else. I work full time, make the bulk of the money, have way too much fun doing active things with my four young kidlets (biking, swimming, skating, climbing monkey bars, swinging on swings which does make me dizzy if I close my eyes so stopped that one etc.), I will easily take hearing loss (and SSD if that is where we end up) over headaches or other 'risks' of surgery. I am 37 years old - but that didn't influence any of the doctor's opinions that I am good to watch. Age for treatment, I was told, isn't necessarily a factor - tumor growth and symptoms are. (Now, the type of treatment might be age dependent.)
If I needed to make a decision tomorrow - I would go with surgery, and would attempt hearing preservation. I am not at all afraid of making a decision. But, I would go for surgery because the tumor is growing not because I want to preserve hearing. I hope I don't need to make that decision for several more years.
I still remember one person on these boards saying - it doesn't really matter what the odds are - it is pretty much binary, either it will work or won't work. So pretty much a 50/50 regardless of the odds given by the doctors.
**************
I am curious though - are the doctors saying not to watch and wait? I don't think I grasped that - but obviously will encourage treatment if you want a chance to preserve hearing.
I am Canadian so don't have that 'for profit' worry. They would operate or do Gamma Knife if I pushed for that option. It might just take 6 months to schedule.
Hopefully this came across correctly. I haven't met many people on the boards in my age group that are watching and waiting. I know some have waited several years before treatment. I don't exactly believe this tumor will never be treated (surgically or with radiation) so am not living with my head in the sand. But, I am hoping to defer surgery for several more years and take advantage of everything I have going for me now.
Good luck with your choice. I will follow along - I learn a lot from other people's experiences.
Ann
-
Ann,
Somehow I missed your post! We had a rough month with my mother-in-law suffering two strokes and then eventually passing (the funeral was on Monday) so I feel like I have been walking through a haze this summer of doctors, hospitals, etc. The first dr, a neurologist that I saw, did recommend watch and wait. The rest of the doctors were pretty neutral in presenting my options, but indicated that if I wanted to preserve my hearing, I should choose the surgery or radiation sooner rather than later and if hearing was less of an issue, definitely watch and wait. I may have driven the conversation with my questions also since I was concerned with continuing developing symptoms and continual hearing loss. Plus it seemed that the better your hearing is when you go in, the better the outcome longterm it is.
So yes, I am going in for hearing preservation. I went though many old post and actually made a chart of people who had "spurt" growers for tumors (jump over short period- say 3 months). I think the bottom line is that I felt like although it is traditionally a slow growing tumor, there are exceptions; although hearing loss is usually gradual, plenty of people have woken up one day with no hearing, etc. I was basically told that whatever I had going into to surgery was my starting point (ie. no fiixing what I had so far). And then I showed hearing decline in 3 months that was significant.
So I decided to gamble. My kids are a little older (10&13) and I am a language teacher and feel like I really need my hearing to teach and manage a bunch of 12-14yr olds. I know that I still may come out SSD, but the tumor will be gone.
I think I also felt that being where it is, even a couple of mm growth would bring on more symptoms. That is just a gut feeling. And I also felt like if I have to have surgery at some point, I might as well get it now when it is small and not impacting my facial nerve (I hope) as much.
Does that make sense? I do sometimes think I am crazy to go through this intense surgery without knowing what awaits me on the other side but it seems with these AN, we can't know, no matter which path we choose.
You can use me as a test case and see how it turns out since we have so many similiarities :D
Cheryl
-
So yes, I am going in for hearing preservation. I went though many old post and actually made a chart of people who had "spurt" growers for tumors (jump over short period- say 3 months). I think the bottom line is that I felt like although it is traditionally a slow growing tumor, there are exceptions; although hearing loss is usually gradual, plenty of people have woken up one day with no hearing, etc.
I was one who had rapid growth - AN went from 1.5 cm at diagnosis to 2.5+ at time of surgery approximately 6 weeks later - so it does happen. During the six weeks I experienced no additional hearing loss and went into surgery with diminished hearing with good word recognition. I chose the retrosigmoid approach in the hopes of saving my hearing, but that didn't happen. My gamble didn't pan out.
However, being SSD was the only permanent side-effect I was left with. A BAHA implant has solved about 98% of that issue.
IMO it's always a good idea to choose treatment (surgery or radiation) before your symptoms get worse - especially when your level of hearing is involved.
Jan
-
A brand spankin' newbie weighing in...I've been lurking and following this post for a while now, since my MRI writeup stated "very close to the cochlea and vestibular apparatus". Having read about what you were told, and since your AN is the same size and location as mine, I intended to ask the Doc(s) about the correlation between SF (or lack thereof) and hearing preservation.
Turns out, I didn't even have to ask. I had my first consultation today, and as he had my contrast and non-contrast MRI results pulled up side by side on the computer, he was pointing out locations of the IAC, cochlea, areas of spinal fluid, etc. When he got to the area around my tumor, and pointed out that there wasn't any SF in the area by the cochlea, I immediately thought "ruh-roh", in the split second before he stated that it wasn't great news.
I got the 50% shot as well. He said he would typically give me about a 70-75% chance, but based on the location and lack of SF, he's only giving me 50. He was quick to say he would like to give me more than that (almost apologetic), but wanted to be as realistic as possible. I told him that was fine with me...that I would rather be pleasantly surprised than horribly shocked after the fact.
Anyway, just wanted to let you know that you have someone in almost the exact same boat as you...with a 5mm AN cozily nestled right up next to their cochlea and a glass only half full of hearing preservation (and in my case, someone is currently running their finger around the edge of the glass making a high pitched noise). ;)
-
Doesn't that just make you crazy! Ours is so small and there it is, all snuggled up to the cochlea. ::)
How is your hearing? Mine seems to be progressing slowly but surely downhill...my tinnitus though is still only the static sound...louder now but still liveable
I'll be the test case as I have surgery scheduled for Sept 23rd and we'll see which way the glass ends up! ;D
-
Doesn't that just make you crazy! Ours is so small and there it is, all snuggled up to the cochlea. ::)
How is your hearing? Mine seems to be progressing slowly but surely downhill...my tinnitus though is still only the static sound...louder now but still liveable
I'll be the test case as I have surgery scheduled for Sept 23rd and we'll see which way the glass ends up! ;D
Best of luck now that your date is set. Definitely keep us posted on it, as I am particularly interested!!!
I thought my hearing was just fine and dandy, until reading a blog last night of another AN'er. He commented on not being able to hear the dr at the urgent care center rubbing his fingers together next to his AN ear. Of course, I immediately rubbed mine together next to my ear, heard sound and thought, "hah! no hearing loss". Then I thought, "maybe I should try it next to my other ear for comparison." It sounded 10X louder. Dang!!! I tried different fingers, different hands, everything. Still couldn't hear the higher frequencies during my low-tech hearing test. I go for testing by those actually in the medical community on Tuesday, so we'll see how it goes.
My AN seems to be following the precedent of my oldest son, who at the time of his birth had gotten so cozy, he had to be induced and literally dragged out past his due date, since he had gotten so darn comfortable. At least my AN isn't 9 lbs. Yet. ;D
-
LOL. My first had no plans of coming out either...snug as a bug and backwards to boot! Loooooooooooooong labor, 4 hours of pushing and then suction cupped her out! Hope my AN is not that comfortable!
-
Cheryl,
Thanks for sharing your thinking as you made your decision. So many factors enter the process don't they?
I read in another thread that you are going to House on the 21st...
All the best,
Kate
-
Hi, Kate! I keep hearing your name! Have spoken with Donnalynn and Cindy so far to get my House tips. I see you had middle fosa with Brackmann. I am going to pm you. When the calendar turned to September yesterday, I started getting very anxious. I start school today (am teacher) so will pm you some questions tonight.
Cheryl
-
Hi Cheryl
Every decision is a gamble - for all I know my tumor will grow, force surgery decision in 6 months and in that time cause a sufficient hearing deterioration that preservation is no longer available.
That is what makes this all so hard.
I will watch with great interest - sometimes I think I should just take the plunge, but then just stop thinking about it all together and go back to the daily fun of stuff.
Ann