4 out of 6 docs say wait?????

[Nancy Drew]

As you can see, I have a small AN that grew slightly this past year.  I have some bothersome hearing loss, but it is serviceable.  My AN doc recommends GK, but when taken before his conference the vote was 4 no and 2 yes.  My doc was the only surgeon (does GK and surgery) on the panel, and he doesn't want to see it grow and cause more damage. He said surgeons have a tendency to think this way--take it out.  He informed me of the risk of losing more hearing if I had GK, but he also said he would recommend the GK for himself, his wife, sister, mother, etc if they were in my situation.  He said I might want another opinion so he referred me to a doc at the local university hospital.  This doc is also a surgeon who does GK and surgery.  I am totally confused.  Since none of these ANs are the same, I am just plain scared to go either way.  The four against suggested to continue to W & W since the AN is small, and I still have serviceable hearing.  Follow-up they said with my annual MRI in May.  In the meantime I have called my doc to see if I should have another balance test.  The first one after diagnosis was normal as was my hearing.  I do feel a bit tipsy at times so I want to keep track of that.  The AN doc I wanted to get the opinion from the most was not able to make the conference.  I might go see him if my insurance will let me have a third opinion.  I am just exhausted.  I have lost my "gut" feeling for now since I thought the panel would come back and say go ahead with GK.  I also wonder why that one other doc said yes to GK.  I think if it had been just my doctor voting yes, I would continue to W & W.  I don't want to lose any more hearing or get any other symptoms.  It feels like a no win situation.  Another thought though is maybe a MRI at six months would be better.  Have any of you been in a similar situation?  Thinking about just shutting down my feelings for awhile.  Maybe I just need a rest from all of this.  Someone on this board said our ANs will always be a part of us.  It stinks.  Thanks for listening.  I feel like I have just about worn myself out with questions on this board.  Sorry!

Nancy

[leapyrtwins]

Nancy -

having an AN and deciding on when and how to treat it can be overwhelming.  You might need to take an AN break for a while.  Sometimes stepping away from something and coming back to it can give you a whole new perspective.

Everybody is different, but I know in my case I would have found too many opinions very confusing.  I am somewhat unique because I didn't consult with anyone other than the neurotologist my ENT referred me to.  I decided early on that he was the "guy for me" and I've never regretted my decision.

I wouldn't wait forever to make a decision, but you certainly have time to consider things for a while before making your final choice.

Good luck,

Jan

[Nancy Drew]

Jan,  I am going to shut the computer off right now because I do need a break.  I have been online looking for answers for over three hours now.  I am exhausted.  I am sure I'll be back here tonight, but in the meantime I'm going out to work in my yard.  Maybe I'll get lunch first because I forgot to eat.  What a life these days.  I hate it, but it is what it is.  Thanks for your support.  Nancy

[Jim Scott]

Nancy:

It is abundantly clear that you are confused and in turmoil over your AN and what to do about it.  With doctor's giving you differing opinions, I can see why.  You've indicated in previous posts that you don't want surgery so if you hold to that, radiation is really your only option, other than doing nothing ('Watch-and-Wait').  Unfortunately, doing nothing worries you too, because you (naturally) don't want to lose more hearing.  I can see why you're frazzled.  I would be too.  This is why we often say that making a decision on the form of treatment is the biggest hurdle in the AN 'journey'.  I won't presume to make this decision for you (and don't wish to, even if I could) but if you opt for 'Watch-and-Wait' (observation) semi-annual MRI's are almost a necessity as they would very likely show any significant growth in time to have the radiation you'll probably go with and by so doing help preserve your usable hearing. 

I concur with Jan: consider taking a break of a week or so and simply not focusing on your AN.  All the angst and sleeplessness doesn't change anything but it does debilitate you, eventually, to no useful purpose.  I wish you some peace and a better tomorrow.

Jim

[Nancy Drew]

Jim,

I always appreciate your input, and you are a wise person.  You are an excellent writer, and I figure you must write for a living.  If not, you should!  Taking a break for a week would probably be the right thing to do, but it might be more likely that I will just take a day off!  Then I can see how it goes from there.  I am becoming more comfortable with the idea of a MRI in 6 months, and then 6 months after that.  If there is no growth or change in symptoms after that then I would probably be satisfied with going back to yearly MRIs.  I would much rather W & W until November than do something right away, I think.  Thanks for all of your suggestions and support.

Nancy 

[sgerrard]

Hi Nancy,

Fun, isn't it? 

I think you should make that one week break a month. It really comes down to whether you are convinced that treatment now is in your best interest. It would be a mistake to get treatment before you are sure that you want it. If you watch and wait for a month, you can better judge whether watching and waiting "sits well" with you. If it drives you crazy, that would suggest that you really want to get it treated. If it seems okay, then waiting for an MRI and hearing check in November makes sense.

You can put off making any decision for a while, and still hang out in the forum. Just focus on some new ways to tease Jim. 

Steve

[Nancy Drew]

You are a funny guy Steve.  What can I do to tease Jim?  Is he a writer or something?  He seems smart.  Are you reading this Jim?  If you are then tag you're it!

Nancy Drew

[leapyrtwins]

Nancy -

Jim has been teased a lot lately - just search the forum.  It might actually be a great way to take your mind off your AN - since we definitely love to write humorous things here 

Rumor has it that Jim is a) a Maytag repairman or b) in the witness protection plan.  It all started when he confessed that his real name isn't Jim Scott 

He has also taken a lot of ribbing about the big words he uses.  But in all fairness, that's only because a lot of us here don't know what he is saying and have to look up these big words 

Jim is very smart and writes very eloquently - he says things I wish I had said; he also says things I've tried to say tactfully, but with much more tact then I ever could.  We all respect Jim, we just like to tease each other.  Lori does it to me all the time!  Of course, I give it right back to her 

Jan

[Tumbleweed]

Nancy, I can totally relate. I also feel like I'm in a "no-win" situation. Unfortunately, that's the nature of this illness. The tumor causes life-changing problems, but the treatment can also have serious consequences.

Nobody can make your decision for you, but here's something to consider. If you're willing to gamble about suffering futher hearing loss and possibly the start of other symptoms through inaction (W & W), every year you can put off treatment raises the possibility that current treatments will be improved or that new treatments (e.g., engineered vaccines) will become available that offer better odds of preserving your quality of life. Those alternative treatments are probably many years away, but these tumors tend to grow slowly (unless you're me, and then they take off like there's no tomorrow!). On the other hand, getting treatment sooner might help you get on with your life. It's a tough decision.

When I asked Dr. Chang a few weeks ago how long I could afford to wait to get CK treatment for my 2.1 cm tumor (now beginning to press against my brainstem), his response was to ask me if my symptoms were getting any worse. With the caveat that hearing loss can be sudden and profound while watching and waiting (and treatment can also cause sudden hearing loss), you might ask yourself if the progression of your symptoms leads you to think you have a lot more time to decide when and how to get treated or if you should be in a hurry to halt a steady decline you've been observing in your health.

The problem is, of course, that all this is a crapshoot -- nobody can tell you in advance whether W &W or getting immediate treatment will preserve your hearing more or for longer. In the end, an AN is like a partner in a bad marriage. You agonize over the consequences of taking action or not until one day you wake up and you know that one of you has got to go. If you're not there yet, there's no need to rush into making a decision right away.

Best wishes,
Tumbleweed

[fbarbera]

Gosh, Nancy, I feel your struggle.  My tumor was so big that I had no choice but to get treated fairly quickly (docs suggested I get get treated within 3-4 months of diagnosis).  The decision as to whether to watch & wait has got to be one of the toughest ones facing an ANer. 

In my case, I wasn't really capable of making a treatment decision until I had consultated with four independent doctors (i.e., each was affiliated with a different medical center), not including the doctors I consulted on an informal basis, such as the docs on the CK forum.  It was a little excessive and there was an element of information overload, but it was the process I needed to go through to get to clarity.  You seem like a very diligent and thorough person, so it is possible that as with me, speaking to a couple of more doctors might relieve some of your tension and anxiety by answering the questions that seem to be lingering in your mind.  It will be hard to relax and step back from this until you reach a place where you are doing so consciously, fully comfortable that you have done your homework and have the right level of knowledge.  Then, when you reach that point, you might take a few deep breaths and a couple of more weeks to let all the information marinate and sink in and process. 

If you decide you want to wait some more, the 6 month MRI seems like a pretty good idea to me.  I can't think of any downside to getting the MRI sooner rather than later.

Hang in there, Nancy.   Just keep working through your process and you will get to clarity!

Francesco

   

[macintosh]

I'm going to drop something in here from the University of Pittsburgh site. It suggests that when neurosurgeons are asked what they would do if they had an AN, a lot of them would watch and wait.

From www.acousticneuroma.neurosurgery.pitt.edu:

Survey Case One: You are a 37 year-old neurosurgeon who presents with mild decreased hearing on one side. You have no tinnitus and no balance problems. Facial function is normal. An MRI scan (right) shows an intracanalicular acoustic neuroma and serial scans have shown a small amount of growth. Which management strategy would you choose for yourself -- observation; surgical resection; stereotactic radiosurgery; fractionated radiotherapy?

Response: The majority of surgeons stated that they would choose stereotactic radiosurgery for management of their small acoustic tumor (n=283; 43%). Only 122 surgeons stated that they would choose surgical resection of their tumor (18%). Fractionated radiotherapy was chosen by 2% of responders. Interestingly, 240 surgeons stated that they would continue to observe their tumor (36%) rather than undergoing any specific treatment at the present time. It had been stated in the case presentation that serial scans had already shown a small amount of growth. This tumor had been observed and was increasing in volume. Nevertheless, approximately one-third of responders continued to choose observation for a 37 year-old patient with a small, but growing tumor.