Author Topic: Decision made  (Read 13208 times)

Lita

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Decision made
« on: May 25, 2010, 06:35:56 pm »
I was recently diagnosed and am interested in NYU, probably surgery. I saw posts about Dr. Lalwani's and Dr. Parker, both comments were favorable. Does anyone have further experiences and opinions about them? I liked Lalwani and I am meeting Parker on Friday.

Also I notice many have lost a lot of hearing. I am wondering if the loss of hearing was because of the treatment, because you waited, or because the AN was fast growing. I have moderate to severe loss at the higher range now. I didn't notice my hearing loss because the tinnitus was so loud I thought that was why I couldn't hear correctly.
« Last Edit: June 21, 2010, 01:48:48 pm by Jim Scott »

Jwh

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Re: Just diagnosed, making decisions
« Reply #1 on: May 25, 2010, 06:49:36 pm »
Hi,
I went to NYU and had Dr. Roland and Dr. Golfinos. I can't say enough great things about them.  They are absolutely superb in what they do!  Extremely skilled and completely compassionate.  A winning combination for me and many others on this board!  Do yourself a favor and meet with Dr. Roland before you make any decisions.  I give them both A+++++
Jen
5/01  1.3 AN removed at NYU using Retrosig. Approach
2/07  Rediagnosed with Regrowth 8 mm (wait & watch mode)
1/09  1.4 AN removed at NYU using Translab (total tumor removal)

Lita

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Re: Just diagnosed, making decisions
« Reply #2 on: May 25, 2010, 06:53:43 pm »
When I tried making appointment with Dr. Roland they switched me to Dr. Lalwani for insurance reasons. I would have liked to have met him. Did you think the hospital was good too? Was the surgery scheduled quickly after you decided to go ahead? Thanks, Lita

Jwh

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Re: Just diagnosed, making decisions
« Reply #3 on: May 25, 2010, 07:01:42 pm »
Dr. Roland didn't accept my insurance but I fought it with my insurance company and they granted him as "in network" for me.  It was worth it!  What's your insurance?  NYU is a great hospital.
5/01  1.3 AN removed at NYU using Retrosig. Approach
2/07  Rediagnosed with Regrowth 8 mm (wait & watch mode)
1/09  1.4 AN removed at NYU using Translab (total tumor removal)

Lita

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Re: Just diagnosed, making decisions
« Reply #4 on: May 25, 2010, 07:31:58 pm »
Empire BCBS PPO. You went twice to NYU, both Roland? Have you lost hearing, and at what point?

Have you heard anything about Parker or Lalwani?

Jwh

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Re: Just diagnosed, making decisions
« Reply #5 on: May 26, 2010, 10:41:00 am »
I only went once to Dr. Roland.  I had moderate hearing loss with the first surgery.  After the second, I lost all my hearing.  I had the Translab done and you're guaranteed to loose all your hearing with that approach.  Translab has benefits it is the most direct approach and has the least chance for recurrence.  Faster surgery in and out.  Don't know much about the other doctors but Roland & Golfinos are very well known.
5/01  1.3 AN removed at NYU using Retrosig. Approach
2/07  Rediagnosed with Regrowth 8 mm (wait & watch mode)
1/09  1.4 AN removed at NYU using Translab (total tumor removal)

Lita

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Re: Just diagnosed, making decisions
« Reply #6 on: May 27, 2010, 09:09:39 pm »
I started off kind of positive, reading and moving ahead steadily with this AN. Now I have had enough and disgusted that anything I had thought I figured out is uncertain. Mine is 1.1 and I have that annoying ringing. I don't know how much of my trouble hearing is from some hearing loss (at 2K to 8K mod to severe loss) or the damn ringing. I had seen two neurotologists and considering surgery at NYU (retrosig). My thinking was if I have the surgery now it would go better as it is small. I was thinking hearing would more likely be preserved. More dangerous if I was older or had a medical problem. It so far has not caused balance and facial problems.

When I looked at the survey on this site most people who had hearing before surgery lost their hearing - from levels 1 to 5 (not including translab surgeries). Also on the survey people who watched and waited in many cases - it seemed like 30% - did not have growth that caused problems. Other studies I read seemed to indicate there was eventually growth and many lost their chance for saving hearing.

Just spoke with someone from Ear Clinic (CA) tonight. He explained I could wait and enjoy my quality of life as I am hearing without other symptoms. Or I could have surgery, middle fossa. 

So now  the surgery I hoped would save usable hearing would possibly make me lose my hearing. The approach and doctors are even in question.  If I were to have surgery this summer would be the best time for many reasons, although I know there is no rush it would be best for me. I can see there is no end to the issues involved and why this is a good place as everything is discussed right here. But I am tired and have trouble concentrating (do you ever get used to the ringing) I feel like just giving up from weariness already, and I'm just starting!

jaylogs

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Re: Just diagnosed, making decisions
« Reply #7 on: May 28, 2010, 01:06:46 pm »
Lita, welcome to our little club, sorry you had to find it, but you will not find more compassionate and caring people anywhere else!! I had middle fossa surgery done about 6 months ago.  I retained my hearing, but it's slightly less than it was when I went in, but i'll take that any day!  I would suggest doing a search for the term middle fossa and finding out more info about it all, there's many different opinions and experiences out there dealing with that particular thing.  If you have anymore questions, please post 'em, you'll get plenty of replies, I am sure! Take care and good luck!
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

Jim Scott

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Re: Just diagnosed, making decisions
« Reply #8 on: May 28, 2010, 03:38:14 pm »
Hi, Lita - and welcome.  

I'm sorry for the belated response to your initial post but I've been a bit preoccupied with non-ANA things lately.  However, I wanted to let you know that your feeling of frustration is fairly common when you find yourself diagnosed with an acoustic neuroma and seeking the best way to address it.  Although it's a relatively rare condition, there can be a lot of options when the tumor is small at the time of diagnosis.  I'm assuming that you've decided against irradiation treatment and are set on surgery to remove the AN but I also assume that you have the option of simply observing the tumor via semi-annual MRI scans to determine if it is growing.  Often, these tumors lie dormant for years, as mine did.  Post-surgical hearing retention is usually chancy but an obvious goal, although even with the Retrosigmoid or Middle Fossa surgical approach, there are no guarantees.  Unfortunately, this is one of the inevitable risks involved with addressing an acoustic neuroma.  

One of the realities you're apparently learning regarding ANs is that each AN patient's situation is unique and there are no 'magic bullet' approaches.  Some surgical patients do splendidly and recover quickly with little-to-no hearing loss while others lose their hearing or see it greatly diminished but otherwise come through just fine while others (thankfully rare) may lose hearing (in one ear) and also struggle with intractable issues for some time.  However, most AN surgical patients have a few temporary problems post-op, then recover nicely.  I had almost no post-op issues and a good recovery.  A few months later I underwent FSR treatments to kill the remaining tumor's DNA.  That went well, too.  Unfortunately, I had procrastinated about addressing my unilateral hearing loss (later found to be caused by my AN) and the hearing nerve was fatally compromised so hearing retention was never a real issue with me, pre-surgery.  Although my neurosurgeon always held out a glimmer of hope, I just assumed my hearing was gone for good in one ear and I adjusted to that reality.  That turned out to be a prudent decision as my hearing has never returned in my 'AN ear' (my left).  I compensate as necessary.  We're a very adaptable species.  

We all share in your sense of frustration.  It's a tough journey with many crucial decisions involved.  No one wants to make a mistake and bitterly regret it later.  The critical issues are (a) to find a doctor with extensive experience surgically removing acoustic neuromas, (b) a doctor that you feel comfortable with and, (c) a doctor that accepts your medical insurance and is 'in network'.  ;)    

These forums exist to help AN patients.  We offer our collective advice, information that is practical and based on AN patients' 'real-world' experience - as well as our unequivocal support.  We don't second-guess other AN patients medical decisions and we try to offer as much encouragement as possible.  We even have a bunch of folks who are willing to talk on the phone to people dealing with AN issues, especially the newly-diagnosed, like you.  We know you're in a tough spot because we've been there, too.  We made it through and so will you.  We don't offer you happy-face bromides but we are positive and try to help those who are discouraged see that this is not an insurmountable medical problem.  We stand ready to answer your questions (if we can) or direct you to a place where you can get an answer (if we know of it) and we always try to look ahead, not focusing on past problems that can't be remedied.  I hope you'll find the forums both friendly and informative.  As I often state, we're 'open' 24/7.   Drop in anytime.  You're among friends, here.  

Jim  
« Last Edit: May 29, 2010, 02:41:28 pm by Jim Scott »
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Lita

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Re: Just diagnosed, making decisions
« Reply #9 on: May 28, 2010, 09:19:18 pm »
I am calmer today and glad you wrote. I just could not read all over the site as I could not process anymore all I was reading. Yesterday was the worst day I had. I imagine some people have also not noticed their hearing loss at first and lost it, as began happening to me and did happen to you Jim. I went from hearing loud ringing for two months to finding I have some hearing loss then diagnosis of AN. Now it seems I am having more trouble catching what people say and using that ear for the phone, and it seems my hearing is steadily changing. Do you ever get used to loud tinnitis which I find interferes with my processing.

I feel I am not comfortable waiting. The reason I feel this way is my symptoms are increased and it has only been two months. The other problems I don't have - with balance or my face. I want your outcome Jay but also know it may be more like Jim's. I spoke with four specialists (NYU Mt Sinai and House Ear) and all left it to me for either waiting or surgery, reviewing much of what you all already know. House and Smouha leaned toward waiting. I really really like Dr. Lalwani. Dr. Parker I saw today and he is just as wonderfu. He also was patient and explained everything, gave me as much time as I needed for questions. That and reading the posts calmed me down.

It is really a crazy situation though to make these decisions. The posts of what I thought I heard actually cheered me up quite a bit. Aren't we resilient when we could have different outcomes and make the best of it. Still hoping I will have Jay's. I have feeling I will be here more because this is only the beginning. Thanks for writing, Lita

Denise S

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Re: Just diagnosed, making decisions
« Reply #10 on: May 29, 2010, 06:47:15 am »
Hi Lita and Welcome to the forum!!

For starters I have to say Jim covered much.   The biggest point being "each AN patient's situation is unique and there are no 'magic bullet' approaches".   Boy is that the truth!!     

Have you had any other tests done yet like an ABR (Auditory Brain Response....for hearing) or others for balance, facial nerve, etc???    Those may help play a big role in decision making.   Like since your hearing is already affected some, if the ABR comes back with bad readings there may not be a good chance to preserve hearing.   (just saying, but not positive...doctors should know more).    Translab is the surgery that is 100% hearing loss.     The Middle Fossa "supposedly" gives the highest chance to preserving hearing, but I am not sure I believe their stats.    Now Retro too has chance of hearing preservation, but seems like it might be the higher chance of post op head ache issues.   Now with all the surgeries and the stats, nothing is guaranteed and everyone IS different.     

Now you asked about hearing.   I was in watch & wait for awhile because my AN was found not due to symptoms from it, but having a CT after hitting my head & another (benign & stable) brain tumor was found.   My AN was very tiny at the beginning, but was growing for sure.    So by the time it was around 1cm and just started to affect the ABR test I decided to go with Middle Fossa (for me I couldn't do radiation, wasn't crazy on what I read & I am more a worrier, so just wanted it out of my head).       Anyways, my hearing loss was not before the surgery, and probably not right away.  But my doctors monitored the ABR while in surgery and mine tended to good bad once, but came around during closing.   Then I ended up with some big time post op brain swelling & delayed facial paralysis.   That made me lose my hearing for sure (which I am not 100% positive how much was really there anyways).   The doctors said the swelling did a final "toasting' of my nerve.      I did my research after and found very few people got "lucky" enough to have hearing preserved.   You mentioned Jay & his situation would be the best & most idea forall of us, but all different.    I even once thought maybe because his tumor was smallere??   Not necessarily either.   I know 3 others that had Middle Fossa around our time and tumors smaller than his that lost their hearing too, ugh!     So much depends on where the tumor is when they get in there too.         As for tinnitus, I got that almost sometime post surgery too.   Seems like most people who have it before surgery, it don't go away.

I hope I am not too much of a bummer post here, but I know you are at probably the hardest point of this journey I can remember.    Sometimes I had just wished my tumor had been big enough it damaged my hearing & balance before, so then Translab would be only option....no even radiation is an option after some sizes.     OH, as for balance ans smaller tumors...not sure if your doctor mentioned this....but usually the balance nerve gets severed during surgery because majority of the AN tumors are on that nerve.   Well with smaller tumors our body & brain hasn't started compensating for the balance issues much.   Whereas with larger tumore many times the brain & body has already started to compensate for the balance issue which makes it easier in recover.     PLEASE note I didn't try to give any guarantee, I use many "Many or Some"

Once again, I don't want to be bummer.   But believe in honesty and honestly for me personally I didn't read too much before surgery and really had my hopes up to have 'that persons outcome', but it didn't happen.   So that too was frustrating.    Knowledge of possibilities can actually be of help.

Best wishes!!
W&W 2 yrs. (due to watching other brain tumor: it's stable)
Left AN:  1.2 cm (kept growing during 2 yr.)MIDDLE FOSSA  11/9/09;  Michigan Ear Institute Dr. Zappia & Pieper
SSD, mild tinnitus, delayed onset of facial paralysis lasting 3-4 weeks, no tears AN side
BAHA surgery 10/2/12 Dr Daniels G.R.,MI

Denise S

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Re: Just diagnosed, making decisions
« Reply #11 on: May 29, 2010, 06:55:10 am »
Gee, you would think I wrote enough already.....sorry.

I forgot to mention or ask if you got any information from the Acoustic Neuroma Association (ANA)?    They have GREAT booklets of info and newsletters (even past ones available posted on their site, if you join the group).   You can join or just buy specific booklets what you want.   I think the annual fee was $40 (well worth it for me).

Their website:  http://anausa.org/

Best wishes!
Denise
W&W 2 yrs. (due to watching other brain tumor: it's stable)
Left AN:  1.2 cm (kept growing during 2 yr.)MIDDLE FOSSA  11/9/09;  Michigan Ear Institute Dr. Zappia & Pieper
SSD, mild tinnitus, delayed onset of facial paralysis lasting 3-4 weeks, no tears AN side
BAHA surgery 10/2/12 Dr Daniels G.R.,MI

Mickey

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Re: Just diagnosed, making decisions
« Reply #12 on: May 29, 2010, 08:35:24 am »
Hi Lita! After reading your post I see alot of simiarities. I`m with Drs. Roland + Golfinos at NYU have a 1.1x.06 AN,  tinnitus with just a slight hearing loss on my AN side. There is alot that goes into our decisions. In my case tinnitus has been with me for 30+ years and I`ve tried everything with the best results coming from Neuromonics at NYU. It still hasn`t cured the tinnitus just made it more tolerable to live with. While being diognosed 3 years ago at age 59 and possibly having this AN much longer I`ve decided to Wait + Watch. So far keeping a healthy life style everything is "stable" going for my next yearly MRI in AUG., with my hope of never having to intervine unless necessary. Under my circumstances my choice was made especially with me approacing 62 now. All circumsances are different and I`m knowing whatever your choices with todays knowledge your going to be fine. Best Wishes, Mickey

Lita

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Re: Just diagnosed, making decisions
« Reply #13 on: May 29, 2010, 09:42:53 am »
Hi, your experiences help. When I read all from the past posts, especially newbie questions as there is where I thought I should start, I really became overwhelmed, also having trouble thinking with the ringing. I am going to look up neuronomics.No outcome per se is a nightmare to me except dying in the OR. The rest I can consider and want to know as much as I can focused like this.

Pretreatment is it possible to have the ABR not good and still have usable hearing? I was considering this test. I don't know if this is necessarily a good sign but my tumor is more medial with the lateralmost portion of the canal clear. I also wonder if that is why he suggested the retro. How does middle fossa help minimize the hearing loss? It seems the tumor is kind of tangling the nerves which is one reason for loss and the swelling is another reason. Denise, do you have any hearing in that ear? Did you have problems after surgery with balance, and still now? He told me the balance nerve would not be saved.

Micky, I am 59 right now which gives us another similarity at diagnosis. Has your tumor not grown? Also, I hear some don't grow at all or grow so slowly even less than 8 mm per scan. But do the symptoms remain the same. When I thought of waiting I imagined them insidiously grasping onto nerves or something. Many thanks, Lita

Denise S

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Re: Just diagnosed, making decisions
« Reply #14 on: May 29, 2010, 02:14:05 pm »
Supposedly the Middle Fossa can give more of a direct approach to the tumor while seeing the auditory nerve the best and that is why it is 'supposedly' the better of chances for preserving hearing.   ALTHOUGH, it is only a slightly higher % than retro.    I had read on here before that some doctors don't even do Middle Fossa, whereas some don't even do the Retro.   Don't exactly know why.      There also seems to be different side effects after surgery for the 3 types of surgery.  I "think" it may be possible to have a not so good ABR and still have usuable hearing, but not sure to what degree and how much of a difference it all makes.   Doctors would have to answer those questions better.

As for me, yes the hearing is completely gone in that side.   I actually had real crappy balance for a couple weeks that I had to use a walker.   I think a lot of it was for security purposes too that I had the walker.   I've had a history of passing out & hitting my head.   Last thing I wanted to do was stumble and hit my newly messed with head.   I  did all the vestibular/balance exercises the doctor sent home with me, plus plenty of walking the first month post surgery, so that helped get me back on track good overall.   My balance is not perfect, but my doctors told me it probably never will be.   Seems like a lot of people have that here.   Not an issue for me really.   

Personally I think watch & wait is always a good thing depending on the size of the tumor and what it may be causing.   

Interesting on the similarities of you & Mickey  ;)      (maybe I missed), but have either of you looked into radiation at all???

Take care,
Denise
W&W 2 yrs. (due to watching other brain tumor: it's stable)
Left AN:  1.2 cm (kept growing during 2 yr.)MIDDLE FOSSA  11/9/09;  Michigan Ear Institute Dr. Zappia & Pieper
SSD, mild tinnitus, delayed onset of facial paralysis lasting 3-4 weeks, no tears AN side
BAHA surgery 10/2/12 Dr Daniels G.R.,MI