When to have treatment?

[targa72e]

Hi all,

I have been a wait and watcher for the last year. I have been very lucky in that in the last year my hearing has improved quite a bit. I was originally 80DB loss with 64% SRT (tested 5 days after initial loss) and now am  50DB loss and 88% SRT (last month) for this I am very fortunate.

My one year MRI (last month) was stated as “no significant growth “  but I got CD’s of my MRI’s and played around with the software program that was loaded with the images (It was pretty cool and allowed you to do all sorts of neat stuff). Anyways I used the sizing part of the program and measured the sizes myself. I came up with a small growth of about .5-1 mm over the last year (still within the error of the MRI). I have also had an increase in symptoms over the last year with a increase in tinnitus and some balance issues, etc.

I had pretty much decided what I would do before I saw a specialist last year so the meeting was pretty anticlimactic with the Dr. agreeing that waiting and watching was the way to go at the time. I had decided that since my hearing was mostly shot I would wait until there was a confirmation of growth and decide a treatment course before the tumor was 10mm. Now I am not sure what to do.

My hearing is pretty good now and for the most part I don’t notice my right side being worse than the left most of the time. However I can remember how hard it was to hear a month or two after initial diagnosis a year ago (I think my hearing got worse over the first month or so before it started getting better) and for the most part it sucked.

So that brings me to my question for you as well as the Dr’s I will see over the next couple weeks. I am really struggling as I thought I had it all planned out. When should I seek treatment? Do I do something now with the associated risks to try and save the hearing I have or do I continue to wait knowing that my hearing could be lost at any time and probably not regained? When do I do something?

My plan right now is to see a local surgeon who also recommends radiation (my referral a year ago), a surgeon who also runs the local Gamma knife unit, the Local Cyberknife center and talk with the Dr's at House. I hope I will get a variety of opinions that will lead me in the right direction. Any advice appreciated.

john

[Jeff]

Hi John,

I know the stress that comes from contemplating this decision. I have NF2, am deaf in one ear, and have a 3.5 cm tumor on the other side yet perfect hearing on that side. It's tough to decide when to "pull the trigger" and get treated. In my case, I know I will wake up completely deaf. I too like the cd's I get every 6 months. That measurement tool is pretty cool. My wife doesn't like it too well because I want run straight home after my MRI and pop in the CD. I think that having the CD is very empowering for me. I can look at the size, compare it to previous scans, and decide what I want to do. I really like my doctor, but we differ to some degree about when to have surgery again. I feel like I would rather be deaf sooner as opposed to increasing the risk for facial nerve damage and other problems by allowing the tumor to grow while my hearing holds out.

Unfortunately, no course of action comes with guarantees for success. I think that you are indeed fortunate that you can still consider all options. My feeling is that if you are considering surgery, there is no benefit to waiting if hearing preservation is a priority. The doctors at HEC are having success preserving hearing using the Middle Fossa approach on relatively small tumors. However,  I am not sure about how important the size of the tumor is when choosing radiosurgery. Others in this forum could better answer that. I think that you are doing well soliciting the opinions of numerous doctors. I spen a considerable amount of time contemplating ( my wife called it obsessing) a long term plan. Once I made that decision, I have stuck with may plan and "rolled with the punches." Although things have not totally happened as I envisioned them, I am comforted by the fact that I made the decisions myself. I would suggest gathering the doctors' opinions, soliciting the opinions of the important people in your life, and developing a plan using those resources. Develop a plan that you feel comfortable with understnading that there will always be the "what if" questions.

I hope I was of some help. If nothing else, please know that I understand how you feel.

Best wishes,

Jeff

[HeadCase2]

John,
  The decision to treat or watch-and-wait is an exercise in risk assessment.  Do the risks in waiting outweigh the risks of treatment.  The risks in waiting may also be affected by the location of your tumor.  I would think-- please confirm this with your doctor- that a intracanalicular AN would be a higher risk for potential nerve damage since nerve VII (facial) and both branches of nerve VIII (hearing and balance) run through the IAC (internal auditory canal).  A growing intracanalicular AN could run out of room and compromise the cranial nerves that run through the IAC.  On the other hand an extracanalicular AN may compromise the brain stem sooner.  When you talk to your doctors ask them what could happen, with your particular tumor, if it grows.
  As far as hearing preservation, my doctor mentioned that that a 50 db loss was about the limit where they felt hearing could be preserved in the AN affected side.  It's rare that treatment doesn't have some negative affect on hearing.  Hearing preseravtion to most doctors does not mean that hearing was not affected, rather that some hearing remains after treatment.  You've experianced 80 db loss, which is not much different than being deaf on that side.  You may have been able to use that side to help discriminate where sounds came from, but my guess is that you had trouble understanding conversation on that side.  My point is that hearing preservation is a worthy goal, but being deaf on one side isn't the end of the world.  Most post treatment people are usually more concerned with facial function and vestibular function.
  Most of us here have been through the treat or wait decision, and understand how tough that is.  Good luck with your risk assessment.
Regards,
 Rob

[targa72e]

Thanks for the replies. I realize that this is a position that  a lot of people are in. The part that I think is somewhat unique for me is that I got to live for a while with a much more significant hearing loss on the AN side. At its worse everything sounded like it was from a blown speaker with a pillow over it. At that point it was very hard to under  stand anything on my bad side. The distorted hearing on the one side made it much harder to hear with my good ear. My hearing now is such that things do not sound distorted only softer, If I have to I can use the phone on my bad side and for the most part I can hear pretty good. So I have lived with one part of what the out come might be (very poor no hearing) but not with the other side effects like totally whacked out balance function. I am not that worried (but still worried) with facial nerve function as the risk with a small tumor are small. It is more a question of sacrificing balance for hearing or other complications to keep my hearing.

thanks

john

john

[HeadCase2]

John,
  Another thing to consider in trying to keep hearing.  My pre-treatment hearing loss was 70 db.  At that level they found in a pre-op test that they would not be able to monitor the hearing nerve during surgery.  For the test they put a small speaker in your ear and send "thumping" sounds, and then look for a response on their monitor.  They're looking for a curve in the response that they can read consistently, that stands out from background data noise.  If your hearing is beyond where they can see a consistent reponse to monitor, the surgeons won't have that feedback from the monitoring person to let them know they may be compromising the hearing nerve.
Regards,
 Rob

[Boppie]

Do you have good to perfect word recognition on your good side?

[targa72e]

Hi All,

My hearing as tested today is 50DB loss and 96% SRT. So if I can hear it is clear and I can understand what was said . I saw my first of several Dr. on my start for opinion gathering. I found out one thing I did not originally know. My tumor is very close to my cochlea (basically touching) thus I am at a higher risk for hearing loss with any treatment or tumor growth.

General conversation was something like if you don’t do anything you will probably eventually loose your hearing. That eventually could be tomorrow, next year or 20 years for now no one can say. If you decide that saving your hearing is one of your highest priorities then do something sooner but realize you have a pretty good chance of loosing you r hearing from treatment as well as other possible side effects. For now I am going to have some more testing done to establish a baseline on my vestibular function as well ABR and consult with some other doctors.

john 

[Windsong]

Rob,
Thank you for that.
No doctor mentioned this to me at all in terms of the specifics of the hearing monitoring.....

Windsong

[Desilu]

Hi John,

You are definitly on the right track! Gather all your information and make an educated decision. My tumor was small and when I finally realized (it took me 5 years) that I could wake up one morning and not be able to hear, I knew it was time to do something. I searched the internet and came upon this website which has been a wealth of information and comfort for me. I wish you the best with whatever decision you make. Please keep us posted, Ann