ANA Discussion Forum
General Category => AN Issues => Topic started by: nycnewbie on May 28, 2009, 03:29:49 pm
-
Hey Everyone,
OK, I am freaking out. I have been over researching, over analyzing , met with docs, and now have too many opinions and 2 different approaches. I need some serious advice here.
So, Selesnick/Stieg in nyc say Retrosigmoid for my 1.2 cm tumor mostly in IAC. House says middle fossa because retrosigmoid would have harder time getting all of tumor out. Now why would Selesnick who is a top notch doctor tell me Retro if he didn't believe he could get all of the tumor, even if it's deep in the IAC, out??!!
I am feeling confused an overwhelmed.
Any advice would be greatly appreciated.
Best,
Serena
-
Serena,
I had a retrosigmoid surgery last year. I'll let you judge for yourself if they got it all.
Before: (http://i436.photobucket.com/albums/qq87/bdcphotobucket/Tumor2.jpg)
After: (http://i436.photobucket.com/albums/qq87/bdcphotobucket/Tumor3.jpg)
It's definitely possible to get all of the tumor with that approach. The pictures (and my surgeon) don't lie. :)
I would relax about it.
Regards,
Brian
-
Hi Serena .....
..... and welcome to the world of those of us with ANs.
I do not know anything about any of the doctors you mentioned, but I'm sure others will chime in here who do know them. All I can say is I had a 2+cm AN that was both IAC and EAC and it was removed completely via retrosigmoid approach. My neurosurgeon chose that approach in order to preserve my hearing, which he did somewhat (I had 80% before surgery, now have a very useful 20%, boosted with a digital hearing aid). I have balance issues because of having had retrosigmoid surgeries at the CPA on both sides but otherwise doing well .... no facial involvement, no dizziness, no headaches. Many AN patients have balance problems, at least short-term, regardless of treatment, while the brain adjusts and compensates for the loss of the vestibular nerve.
Let us know how you are doing and what you decide.
Clarice
-
Thanks, Brian! But was your tumor deep in the IAC?!
-
Thanks, Brian! But was your tumor deep in the IAC?!
Serena,
To be honest, I don't know if it was partally in the IAC or not. All I knew was that I had a "big" one that needed to come out pretty quickly because of compression to the brain stem (as you can see on the pictures).
I would expect that getting all of the tumor (whether in or out of the IAC) depends on the skill of the surgeon involved in the case. Which may also be why one said that he could get it all and the other said that Middle Fossa has a better chance. My bet is that the House doctor said what he did because he's more familiar with (and better at) Middle Fossa. I also bet that the other doctor would say that Middle Fossa is more problematic for one reason or another. They're both right based on their own skill level with each procedure.
Make sense?
Regards,
Brian
-
Ha, you must be psychic...or just know it's all been said before:) I would have to agree that Middle Fossa is pushed big time at House. But has anyone else on this board had the experience of a tumor deep in IAC and getting all of tumor out with Retro? Is this something I should be super concerned about?
-
Ha, you must be psychic...or just know it's all been said before:) I would have to agree that Middle Fossa is pushed big time at House. But has anyone else on this board had the experience of a tumor deep in IAC and getting all of tumor out with Retro? Is this something I should be super concerned about?
Haha.. I'm not psychic, but I've been around this block a few times. :) I'm sure others will chime in if they have something to add, but I can honestly tell you that the predominant types that typically have regrowths from some being left behind are those that knew some was left behind on the facial nerve because it was just too durn risky to the nerve to take the tumor off of that nerve. So, rather than risk causing permanent facial nerve damage, the doctor left some behind. I've heard of 1 case where the doctor thought all was gone but 1 or 2 cells of the tumor was left behind and a regrowth occured.
Most who have some left behind, they're doctor suggests getting it radiated to stop it from growing.
Which begs the question, at 1.2cm you're well within the size range to consider radiation (CK, GK, etc), so why are you talking to surgeons about surgical procedures?? Are you talking to someone about radiation options?
Regards,
Brian
-
irrespective of where the tumor is, unfortunately, not surgeon will "guarantee" that the tumor will never return.
From analysing posts, the translab procedure, gives surgeons the best look at most tumors, retrisig and middle fossa are supposedly less invavsive. All surgical procedures have their after effects.
i had MF and it grew back and have had chronic headaches since. But thats just me. I recently had radiation treatment on the re-growth
Laz
-
[/quote]
Most who have some left behind, they're doctor suggests getting it radiated to stop it from growing.
Which begs the question, at 1.2cm you're well within the size range to consider radiation (CK, GK, etc), so why are you talking to surgeons about surgical procedures?? Are you talking to someone about radiation options?
Regards,
Brian
[/quote]
hey brian, they say i am too young to have radiation(29) and honestly i do not want to be radiated.
-
I had 2cm removed 6/26/08 theysaid they got it all...i will find out 6/15.Fingers crossed..eyes too sometimes.. ;D
-
I had 2cm removed 6/26/08 theysaid they got it all...i will find out 6/15.Fingers crossed..eyes too sometimes.. ;D
Also keeping fingers crossed.
-
OK, I am freaking out.
No need for that. Choosing between two good alternatives may be difficult, but either way is okay. Oh, whether to get a BMW or a Mercedes...
"More difficult" does not mean not possible. Selsnick believes that he can get it all with retrosigmoid, however the difficulty might compare with middle fossa. I know a welder who can lay down a perfect bead deep inside a steel pipe, using a hand mirror. It is "more difficult," but he does beautiful work.
House, being very experienced with middle fossa, will tend to lean that way on a tumor like this. It gives a more open view of the IAC, and offers a chance at preserving hearing.
Just to cover all the bases, you are not too young to have radiation either. That was the wisdom back in 1991, but things have changed for the better since then.
Steve
-
I was in the same situation you were 18 months ago. Similar size tumor partially in the IAC partially outside. House Docs said definately MF and Hopkins docs said definately retrosigmoid! I was freaking out!! I learned that it really depends on the surgeon and which procedure they are more familiar with doing. I also spoke with a retired neurosugeon from Chicago who took my MRI to a conference with him and the consensus was either way would work and get the whole tumor out and have a chance of preserving hearing. you said it right, it depends on where the docs trained. Those at House do more MF when possible and here on the East coast the docs I spoke with have more experience with retrosigmoid. I was told to go with the surgeon I felt most confident with and the procedure they have done the most. I chose docs at Johns Hopkins (they came highly recommened from my ENT) and they performed the retrosigmoid. 2 MRI's have confirmed they got all of the tumor out! Feel free to pm me if you have more questions.
Hope
-
Hey Serena,
My dr. did retrosig and got the whole tumor out. He said mine didn't start in the usual place so it was already pressing against the brain stem and in the IAC also. It was the same size as yours and he felt that was the best approach to get it all out and save my hearing.
Lois
-
Doctors are different - thus, different opinions on treatment options (as well as surgical approaches, if they do surgery).
Most doctors will recommend what they do best, which is why it's good to talk to a doctor who does radiation as well as surgery, or at least talk to one who does surgery and one who does radiation. You definitely want a well-rounded perspective of everything.
I don't know how deep into the IAC my AN was but it was on the 7th and 8th cranial nerves, if that helps. I had the retrosigmoid approach and my AN was removed "entirely". Entirely being a somewhat subjective word. Although docs do their best and remove what they can see of the tumor, even one cell left behind is enough for regrowth to begin. That said, the chances of regrowth after surgery where the tumor is entirely removed are only 1 - 2 %.
As Laz said, no doctor can guarantee you anything; like you and me, they are only human. IMO, if you find a doctor who guarantees you anything 100%, you should look elsewhere because he/she isn't being completely honest with you.
I'm not sure if mid-fossa vs retrosigmoid would give you a better chance of tumor removal or not, that's probably a matter of opinion based on the doctor you're talking to at the time, but mid-fossa is the best approach if you have good hearing and want to save it.
I'm not a doctor, but I don't think you're too young to radiate. So if you just don't want that treatment option, I'd base your decision more on your personal preference than on your age.
Best,
Jan
-
Everyone!
Thank you from the bottom of my heart for responding! I really appreciate all of your responses...this is the toughest decision of my life...should i get the fourth opinion from Jhons Hopkins?!
the problem is I can see Dr. Carey on June 2nd. I cannot see his partner/neurosurgeon until end of July...don't if I could wait that long.
Do you guys think Selesnick would be just as good at retrosigmoid as Tamargo at Hopkins?!
-
NYC -
oftentimes deciding on your treatment option is one of the hardest parts of the AN Journey.
However, it's a personal choice and no one can make the choice for you. You have to decide for yourself - after doing your research, of course.
Sometimes getting multiple opinions can muddy the waters a bit, but hopefully things will be clear to you eventually.
The main thing is to go with a doctor who has lots of experience in treating ANs (and in the form of treatment you decide on - surgery vs radiation).
Lots of us here went with our "gut" feeling when it came to a doctor and a treatment option. This was my course of action and I've never regretted my decision.
Good luck; we're all here to support you.
You'll get there,
Jan
-
Has anyone had retrosigmoid done with Selesnick or Roland in NYC?
-
Has anyone had retrosigmoid done with Selesnick or Roland in NYC?
I knew the bandwagon wouldn't be far behind me. I took the liberty of cut'n an' pastin' from Debbi's signature:
Debbi - diagnosed March 4, 2008
2.4 cm Right Side AN
Translab April 30 at NYU with Drs. Golfinos and Roland
SSD Right ear, Right side facial paralysis (temp)
She's had surgery with Roland in NYC and has nothing but the highest praise for him (and Galfinos).
I'm with others in thinking that you're not too young for radiation in that's something you want to explore. As Jan said, it's a personal choice (treatment type), so it's okay if it's not right for you but don't let age become a factor for you just because a SURGEON told you that you're too young for RADIATION. That would be akin to a radiation oncologist telling you that you're too young for surgery. The two are equally as preposterous, in my opinion.
Btw, welcome to the forum. :)
Regards,
Brian
-
Hello....I had surgery with Dr. Selesnick on 4/28/09---he removed a 3x2 cm AN on right side doing it restro and removed the whole thing.....he is a great surgeon and really knows what he is doing.....I did consult with Steig first but then due to insurance reason ended up with Selesnick and Gutin team......if you have any questions feel free to pm me
-
Hi NYC! Sorry you had to join this club, but glad you are researching to find answers.
You can see i am in W & W, so i have not had any treatments (yet). However, i did have a surgical consultation with Dr. Tamargo.
Kim (Zinger 1095) had surgery with Dr. Tamargo. If you go back to the main page and type in Zinger1095, you can find her posts.
If you have trouble with the search feature, please let me know.
Since ANs are slow growing benign tumors, i hope you will take a deep breath and do your research.
I am also sure there are some great teams of surgeons in the NYC area.
One more thing - i do have to agree with Steve G. - don't rule out any treatment, including radiation, until you have done your research.
Of course, ultimately, the decision is yours. That's what often makes this AN journey so crazy! ::)
It is QUITE a journey for my family - my sister and i are both here.
Take care and keep us posted.
Sincerely,
Sue
-
Hi NYC,
FWIW, I had retrosig at Mt. Sinai w Dr. Bederson and Dr. Smouha and they were fantastic as far as results and care. And yes they got it all!
Cheers
Neal
-
Hi NYC,
Sorry I am chiming in a little late.
I assume that since House is suggesting middle fossa, you have decent hearing in your affected ear. With a tumor the size of yours,perhaps House is recommending middle fossawith middle because they feel they would be better able to fully visualize the tumor with that approach than with the retrosigmoid approach. Also since your tumor is deep in the IAC, retrosigmoid approach may not allow full visualization of the tumor, middle fossa would. My doc had planned a middle fossa approach until I had a sudden hearing loss that would have made middle fossa not worthwhile and so I had translab. Many doctors trained here prefer to use the retrosigmoid approach because it it the approach they use most often. My doc trained out in California and routinely used middle fossa when attempting hearing preservation. If you would like to meet him, I'd be glad to pass his information on to you. I had surgery at M.t Sinai Hospital last July and had a great outcome other than being SSD.
Best wishes,
Wendy
-
How come you chose Mt. Sinai over NYU or Cornell? Just curious.
Hi NYC,
FWIW, I had retrosig at Mt. Sinai w Dr. Bederson and Dr. Smouha and they were fantastic as far as results and care. And yes they got it all!
Cheers
Neal
-
Hi NYC:
I had retrosigmoid at the Mayo Clinic Nov.21, 08. My AN was 1.3cm.
The first doctor I saw wanted to do translab to preserve the facial nerve, but I would lose the hearing and I had only lost 5%. I was not happy with that answer.
Second doctor would only do retro because he said the tumor was too big for MIddle Fossa. I never asked how it was placed in the canal. He gave me 60% chance to save hearing and I lost it. I also have facial paralysis and eye issues. Hopefully to improve can take up to 2 years. I was very happy with my doctors at the Mayo. Disapoointed that I lost hearing, but life goes on...
I can only sugest that you do your research and listen to that gut feeling on what to do. Everyone has different recovery times but everyone on this forum is so positive. I will keep you in thought and prayers.
Bell
-
I forgot to add that the tumor was completely removed,
Bell
-
I had the same situation as you in 2008. Mine was 1 cm long and extended laterally in the IAC. I was given the same choices. You've already received good advice. I'll add my 2 cents.
The lateral portion of the IAC is difficult to visualize no matter what approach the surgeon takes, but is most difficult for the retrosigmoid. In fact, one paper asserts that you actually can't get to the most lateral portion of the IAC without violating the labrynthe. My neurosurgeon didn't agree and said that he would simply use a fiberoptic scope to see "around the corner". When I spoke to the Neurootologist, he noted that the scope has a difficult time distinguishing between the tumor and adjacent tissue. He strongly recommended the middle fossa approach for a tumor that extends to the lateral IAC.
I had a middle fossa approach in October 2008. They got it all (in one piece). I do have unilateral deafness (my hearing was 100% intact prior to the surgery) and tinnitus. I have some mild balance issues and occasional fatigue. I have no headaches or facial nerve weakness. All in all, I'm doing pretty well.
Good luck with this decision--you'll likely be fine either way.
Dufreyne--
-
I've may have already told you this on a different thread, but I had surgery with Roland on January 10, 2007. All inquires welcome via email, PM or phone.
Joe-
-
How come you chose Mt. Sinai over NYU or Cornell? Just curious.
Hi NYC,
FWIW, I had retrosig at Mt. Sinai w Dr. Bederson and Dr. Smouha and they were fantastic as far as results and care. And yes they got it all!
Cheers
Neal
I got a great recommendation for Dr. Bederson then my GP and I researched him as well as a few others and his background was very impressive. There were Drs at NYU and Cornell I was also considering. Next I met with Bederson at Mt. Sinai and I liked his plan. That's it.
-
NYC -
I didn't mention it in my prior posts, because I didn't want to confuse you even more, but I'd be remiss if I didn't tell you that Drs. Roland & Golfinos have an excellent reputation.
If I wouldn't have had my surgery locally (in Illinois) I would have seriously considered them. IMO they are among the best in your area. I'm not at all knocking any of the other doctors you've mentioned, but not every doctor is for every patient. While I absolutely love my neurotologist, and I have referred lots of AN patients to him, not everyone liked him as much as I do. Some chose him; some didn't.
Confidence in, and a comfort level with, whoever is going to perform your procedure (whether radiation or surgery) is very important. If you haven't already found that in those you've consulted with so far, I'd seriously look into Roland & Golfinos.
Best,
Jan
-
But Wendy, what if you have great hearing and it is deep in the canal? i feel like doing trans would be giving up hope and the risk of facial stuff with middle fossa would not be worth it.
Is there anyone else on this board who was told they had a tumor deep into the canal but had retrosigmoid and got it all out??!!
Serena
Hi NYC,
Sorry I am chiming in a little late.
I assume that since House is suggesting middle fossa, you have decent hearing in your affected ear. With a tumor the size of yours,perhaps House is recommending middle fossawith middle because they feel they would be better able to fully visualize the tumor with that approach than with the retrosigmoid approach. Also since your tumor is deep in the IAC, retrosigmoid approach may not allow full visualization of the tumor, middle fossa would. My doc had planned a middle fossa approach until I had a sudden hearing loss that would have made middle fossa not worthwhile and so I had translab. Many doctors trained here prefer to use the retrosigmoid approach because it it the approach they use most often. My doc trained out in California and routinely used middle fossa when attempting hearing preservation. If you would like to meet him, I'd be glad to pass his information on to you. I had surgery at M.t Sinai Hospital last July and had a great outcome other than being SSD.
Best wishes,
Wendy
-
Serena,
Sorry to just be replying to your question now. If you have great hearing now, in my opinion, it would be worth going for retrosigmoid or middle fossa to try for hearing preservation. Remember though, no one can guarantee an outcome, including hearing preservation. These two approaches ATTEMPT hearing preservation. The middle fossa approach does have a higher risk of temporary facial paralysis, but it would more than likely be temporary. I know your tumor is growing deep in the IAC. Do you know if it is growing laterally in the IAC? If so, then it might be impossible to visualize the entire tumor using the retrosigmoid approach and the doctor might end up having to expose the IAC in order to be certain he got the whole tumor, and you would lose your hearing anyway. And of course, even though the risk is lower, even the retrosigmoid approach carries the risk of temporary facial paralysis. The retrosigmoid approach also has a high risk of post-op headaches and CSF leaks. A large part of what determines facial issues is whether the facial nerve is very involved with the tumor and how sticky the tumor is. If it is very sticky, docs will usually leave a small piece of the tumor behind in order to spare the facial nerve. I believe the same is true if the tumor is wrapped around the facial nerve.
All of these considerations were what made me opt for middle fossa until I had a huge hearing drop. Once that happened and the steroid taper didn't bring my hearing back back, the only thing that made sense for me was translab. As it turned out, my hearing loss was due to a sudden growth spurt in my tumor (confirmed by MRI). Luckily, my tumor wasn't at all sticky and I had only a very minor issue with my right eye which resolved within the first few weeks after surgery.
Wendy
Wendy
-
i feel like doing trans would be giving up hope and the risk of facial stuff with middle fossa would not be worth it.
I can understand your thoughts on this, Serena.
I had decent, though diminished, hearing in my AN ear prior to surgery and I had very, very good word recognition. I was given the choice of retrosigmoid or translab (or radiation, which I decided against) and I chose retrosigmoid because it gave me the chance of saving my hearing. I didn't want to just lose my hearing completely in my AN ear if there was a possibility - no matter how small - of saving it. I told my neurotologist that I wanted him and my neurosurgeon to at least take the chance - and if my hearing couldn't be saved, at least we could say we tried.
Long story short, my AN was wrapped around the hearing nerve and they made the decision (which I fully support) to "sacrifice" the nerve in order to remove the entire tumor. So I took a gamble and I lost. But as I told my neurotologist, who felt terrible about the loss, at least we gave it our best shot. I ultimately got a BAHA implant and that's worked out just great for me.
Jan