No SF between tumor and cochlea

[another NY postie]

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.

[msmaggie]

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

[wcrimi]

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

[wendysig]

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

[Mickey]

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

[another NY postie]

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.

[another NY postie]

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!

[mandy721]

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.

[another NY postie]

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.

[Mickey]

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

[another NY postie]

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!

[Mickey]

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

[jtd71465]

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-

[Darlene]

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.   

 
 

[wcrimi]

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.