Decision made

[LOIS]

Hi Lita,

Just wanted to jump in here cause it sounds as if you want to have the surgery to stop the ringing.  It sounds like none of the drs. you have seen so far have told you-the ringing never goes away.  Something about the brain sending some signal to the ear, dont quite remember how it was explained to me.  I actually have a hissing sound, had surgery in August 2008 and still have the hissing and always will.  I had retosigmoid surgery, still have the same hearing I had before the surgery (mostly) but I just wanted to let you know, the ringing doesn't go away so dont base your surgery desicion on that.  If you have any questions or want to talk feel free to e-mail me.

Take care,
Lois

[Lita]

The tinnitus does bother me although it is hard to say what is causing my trouble hearing, how much is the loss on that side (which seems to have worsened since 2-3 months), the tinnitus sound, distraction of tinnitus, or combination of all. I looked up the neuronomics and it is something I would consider if I end up having this permanently. They told me it is uncertain as to whether this would go away following surgery, as is everything uncertain!

How many AN surgeries is considered experienced for a neurosurgeon, I guess counted by how many a month or year rather than total as some doctors are so much older? Is it true the neurosurgeon does most of the surgery and the neurotologist just kind of opens up and assists? Is it best to leave the hospital as soon as you can and are stable to avoid all the nasty infections in hospital? Did you have balance problems before surgery Denise? Thanks all, you are such a nice group to remember what it was like when you were in this situation first diagnosed and help us just starting out.

[Jim Scott]

How many AN surgeries is considered experienced for a neurosurgeon, I guess counted by how many a month or year rather than total as some doctors are so much older? Is it true the neurosurgeon does most of the surgery and the neurotologist just kind of opens up and assists?

My neurosurgeon performed the entire operation with some help from his assistant who is also a neurosurgeon, but much younger (it was a 9-hour surgery).  He is in his 60's and has been performing AN surgery for over 30 years.  He stated that he had 'lost count' of how many AN surgeries he had performed but that it was "many hundreds".  I believed him.  The hospital nurses all told me that I "had the best doctor in the state for someone with an acoustic neuroma".  This was reassuring.  In fact, he did a fantastic job (no complications at all). 

Is it best to leave the hospital as soon as you can and are stable to avoid all the nasty infections in hospital?

Yes, if possible.  However, your release is determined by your doctor based on your condition.  For AN patients, the usual time in hospital hovers around 5 days but some come home sooner.  Some stay longer but usually only if there are post-op complications, such as a CSF leak.

I hope my response helps answer a few of your questions but others will add to the thread, I'm sure.

Jim

[Mickey]

Hi all! My AN has stayed "stable" no change for 4 MRI`s since 58 years old.. My second yearly coming up in AUG. with no changes in symptoms as of now and even feeling better goin on 62 now.. Of course you must know from my past posts of all I do to stay healthy, W+W boards etc.. If I ever needed treatment I probably would look into Radiation first with my Dr. who does both. My ultimate goal is hopefully not to intervine ever with my symptoms being very bareable. Mickey

[Howard]

Has any one done the radiation twice . I did it once and don't know if I should do it again the AN started to grow again.

[Darlene]

Lita,

I had middle-fossa with Dr. Roland & Golfinos, I was very lucky, my hearing actually improved (currently 96% speech recognition) , I did have some ringing but can honestly say have not had any since the surgery.  Did have facial paralysis but it has greatly improved, if you didn't know about AN's you probably wouldn't know.   

During the time from diagnosis to treatment- my hearing had decreased a little so that is what made me decide to go forward with the surgery, especially because I wanted to try the mid- fossa approach. 
Make sure you ask how many surgeries your doctor has done for your procedure- there are not as many surgeons with experience in mid-fossa approach for instance.  I would think at least 50- 100 surgeries would be good experience. 

NYU was a great hospital I had surgery on a Wed and went home Sat morning, you should be concerned about infection but I have to say every time someone came into the ICU or my room they washed their hands.   I had my surgery  right before the July 4th weekend so, I never even had a roommate. 

every person/ surgery is different. I know this is a struggle but everyone on this forum is rooting for your success

[Lita]

Thanks, I am pretty good now, from reading a lot here and now having a plan - I am going to NYU on June 22. I see some have just had surgery and others also have dates coming up. I decided on surgery as I felt I would regret waiting. I've lost hearing already and if I lost more hearing or had balance, face and other issues and then had surgery, I would regret it. I feel I have a chance at keeping some hearing and now reading Darlene, I see it could even get better. Dr. Lalwani is an associate of Dr. Roland and does about two a week, Dr. Parker does them less frequently but it seems in the good range. Both have been wonderful at the consultations, giving me full explanations and plenty of time for questions. I feel comfortable with them.

I had a week or two that were difficult. The decision making was rough. Some people have been not particularly kind which took me by surprise, but most have been great and true to their nature, that is why they are good friends.

How long were you in ICU Darlene? Did you have much hearing loss on the audiology test before surgery? With the day coming up for me it is so good to know you and some others felt it was a good hospital. I guess the stay will be a few days, but getting out once I'm stable sounds good. In the past it used to be the insurance wanted you out so they didn't have to pay. But leaving to avoid infections is a good reason.

I was told the tumor is on one vestibular nerve but both will be removed/not working. Does it really only take a few days to get your balance and walk okay?

Is having hearing in just one ear very different other than not knowing from what direction the sound is coming? My other ear is fine but I have some hearing loss (my speech recognition is still good now), but with the loss I have and the tinnitus I feel I don't hear as well . I seem to miss what people say more than I did in the past. I'll see what I have after surgery.

[leapyrtwins]

Lita -

the body does adapt to the balance issues post op, but it will take more than a few days to "get your balance and walk okay".

My doc had me do vestibular exercises both pre and post op and it helped a lot.  Some surgery patients eventually go to a physical therapist for help in this area.

Everyone recovers differently, but it's fairly safe to say that you are looking at weeks or months, at least.

Jan

[ppearl214]

Has any one done the radiation twice . I did it once and don't know if I should do it again the AN started to grow again.

Hi Howard and welcome. Glad you found us here. I don't personally know of anyone (off hand) that has had radiation done 2 times but have to ask, if you have already had it done once, what kind of radio-treatment did you have?

In my research for radio-treatments, I did have confirmed to me (as I did inquire) that if my initial radio treatment failed, could I be re-radioed? Answer, in the case of Cyberknife (CK) was yes, thus, one of my main reasons for choosing it.  As I inquired about CK only (as that was the route I was taking), I cannot answer if other forms of radio can be re-done. Hoping others chime in as well.

Again, welcome.
Phyl

[Lita]

My topic can now be "diagnosed, made decisions" as I will be having surgery this Tuesday at NYU. I feel calm enough but very fatigued due to working a little extra and preparing for this. Thought I could rest tomorrow but last minute things to get ready and was asked to come in for final MRI and markers tomorrow (don't seem to remember reading about this).

I also realize there are a few other newbies (wait, I don't think I am a newbie anymore) and want to welcome them - especially good wishes for Vincent as he is going tomorrow. So glad to have learned so much about AN, mostly the experiences of people with AN was what I needed most. Thanks everyone and keep me in your prayers, Lita

[Lita]

Home from hospital, operation Tuesday. Tiliting and dipping, some double vision, tinnutis. Face is good. Tumor out was attached not so good to hearing nerve. Sound right to that ear almost feels like it transmits to my unaffected ear somehow but not heard really through me operated side. Don't know hearing may not have lost all as when I touch ear  hear a little something. It was rough I felt and afterwards morphine got me through. Surgery 7-8 hours. Have trouble typing this and concentrating. Shaky and can't process conversation easy. Need a lot of help walking. Surgeons and NYU was good.

[Jim Scott]

Hi, 'Postie' Lita ~

Congratulations on your successful surgery - and being home! I'm glad to learn that you felt confident in your surgeons and comfortable in the NYU facility.  You'll be in a transitory phase of recovery for awhile but soon, that will pass as your body heals.  Do as much as you can and rest as much as you need to but please don't fret about posting.  We understand that you're just out of the hospital after a serious, extensive surgery.  We'll all be here when you're feeling stronger. 

Jim

[Lita]

thanks Jim. Had a drop or two from nose after eating something soft. Anyone think it sounds alarming? On other side nostril. Don't want to call or get checked right now, by far it was such a slight wetness, no taste. Thanks

[Jim Scott]

thanks Jim. Had a drop or two from nose after eating something soft. Anyone think it sounds alarming? On other side nostril. Don't want to call or get checked right now, by far it was such a slight wetness, no taste. Thanks

Not necessarily alarming but something to be aware of and report to your doctor if it continues and/or gets more frequent.  However, I can understand your reluctance to risk being re-hospitalized this soon after your discharge.  I would have felt the same way.  Still, a CSF leak is not something to ignore so remain aware of the possibility and do what you have to, if you have to.  I'm hoping this is something inconsequential - but time will tell.

Jim

[Lita]

I called MD and will go in Thurs. Only a few 20 seconds of tiny drip felt a few days and taste in mouth is still yucky but not salty or metallic.  No different headache. Double vision checking with Dr. Louhava or name like that neuroophth Thurs too. Facial nerves perfectly fine so don't know why some double at certain gazes. Thanks Jim, will call because looked at others experiences with leaks and dont want that.

too sicknow to say more but see there is a beta something simple lab test to assess for csf leak in mouth or nose. It seems too simple to not be done routinely at some point before leavinghospitalh.