Continue to W & W or Treat???

[Nancy Drew]

Hi!

I have been waiting since 2005.  Now slight growth and minor hearing loss that is bothersome.  The thing is still small.  My AN doctor said GK now before it grows more and does damage, and the second opinion doctor says W & W and see if it grows when I have my annual MRI in May 2009.  I am confused, and I don't have a gut feeling that I can trust right now.  Third opinion maybe?  More research to do?  They grow slowly so why hurry--just continue to W&W or what?  I want to preserve my hearing.  I trust my AN doctor more than I do the freaky doctor I saw yesterday.  I guess like Jan said in an earlier post that it boils down to what chancs you are willing to take.  I'm not there yet!  W & W and treatment sound like reasonable options to me.  Have any of you had a situation like this--what the heck do I do?  Because once it is done it is done.  I have asked so many questions on this board, to my husband, my mother, my friends, etc., and I get more and more confused because everyone has a different idea.  I feel like I don't trust anyone any more, and that includes myself.  The doctor I saw yesterday said if I feel like it is going to affect me psychologically, then just go ahead and get the treatment.  So, what does that mean, REALLY?  Don't but, do.  He seems like a flip flopper or someone who doesn't really care one way or another.  Crazy stuff.

Nancy

[Derek]

Hi Nancy...

The perpetual dilemma of when to undergo treatment is always a difficult choice largely based upon varied medical advice and intuition together with important considerations relevant to the growth rate of the AN and the relevance to present symptoms.

The rate of growth of your AN appears to be on the lower side of normal over the past three years and it is still relatively small. I have total hearing loss on my affected side and now into my 7th year since diagnosis when I was age 58, it causes me no problem whatsoever.

Whilst it is a very personal decision for you based upon your thorough research, neuro medical advice and intuition, at your age of 49, and apparently not experiencing any other adverse symptoms, I wouild personally be inclined (being a self-confessed supreme optimist and 'watch & wait' advocate) to continue 'watching and waiting' until your next scheduled MRI scan whereupon, depending upon the result re any further increase in growth rate, increase in symptoms etc, you will be better informed before making that ultimate and crucial decision re opting for either form of treatment which as you will see from my recent post in the thread 'Top Tips For The Watch & Wait Brigade,' does involve medical risk, however remote.

Regards

Derek

[Gloriann]

Hi Nancy

Can you please tell me what kind of doctors you have seen since your were first diagnosed with this tumor? Were any of these doctors a neurosurgeon or ear specialists?

I am sorry if you will have to repeat some information that you have already posted in places, but I am trying to sort things out. I know it is your decision to make, but I can tell that you have become frustrated with not knowing what to do. You and I are sort of in the same boat. My tumor came back and I am also in the "watch and wait" mode right now, not knowing whether to have Gamma Knife done or another surgery. I have 2 different opinions from 2 different doctors and will be seeing a third doctor next week. This third doctor is the one who removed my tumor 7 years ago. The ear docctor who assisted in the surgery is the one who told me to have another surgery. A new neurosurgeon I have seen the past 2 years told me to have Gamma Knife.

One thing I will say is, the neurosurgeon I have seen these past 2 years told me I don't have to have anything done right away since the tumor is still small (just under 2cm). He also said that these tumors do not respond well to Gamma Knife after they reach 3 cm. That means we need to make a decision before it gets that big. My tumor at the time of my surgery 7 years ago was 4 cm and it took about 30 years for it to get that large.

Please refresh my memory about all of the doctors you have seen and how this was diagnosed.

Thank you.

[Jim Scott]

Nancy:

I've followed your on-going and sometimes agonizing search for answers on these forums and I can understand why you've become confused.  You're not the first to have this experience.  Because every doctor will have a different opinion, the more you consult, the more opinions you'll get.  These will often conflict, and that is confusing.  I also sense that this constant search for definitive answers is causing you much stress. Your past history of battling Bi-polar disorder makes the situation even more difficult.  You really need to take a break (months, not days) and review your options, then schedule an MRI in six months and make a decision on possible treatment at that time, should the AN show increased growth. 

Nancy, every AN patient wants an easy treatment, no loss of any function afterward and a rapid, uncomplicated recovery.   They also want to win the latest mega-million-dollar Lotto jackpot.  Of course its wise to research your options and be very particular about- not only the treatment you choose, but the doctor(s) who will be in charge of that treatment.  However, consulting doctor after doctor in order to find the 'perfect' approach to your treatment can become not only tiring, but confusing.  It comes down to simply taking a risk.  No doctor can guarantee the outcome of any procedure.  If they could, they would be a magician, not a doctor.

I believe the doctor that told you that if the AN is going to affect you psychologically, to have it addressed, is simply stating the obvious.  You're stressing out and apparently want to make a treatment decision but cannot, so you're getting very anxious and this is not good.  If you simply can't wait until May for your next MRI without a lot of psychological anguish, then you'll have to take a risk and make a treatment decision.  It's as plain as that.  Lots of folks will pray for you and of course this forum will always be here for you, but in the final analysis, Nancy, it's your decision to make and no, the results can never be absolutely guaranteed.  We all wish that were not the cold, hard reality of having an Acoustic Neuroma, but it is.  I'm sorry to be blunt, but I hate to see anyone torturing themselves over a decision, as you have.  I can't offer you an easy answer but I hope and pray that you'll find an answer to your dilemma for yourself, and soon.  You deserve some peace of mind and not all this angst and confusion.  Take a break, please, and give yourself some respite.  AN's do grow very slowly so there is no need to to be hasty or feel pressured to 'do something' immediately. 

I truly wish you better days. 

Jim 

   

[leapyrtwins]

Nancy, every AN patient wants an easy treatment, no loss of any function afterward and a rapid, uncomplicated recovery.   They also want to win the latest mega-million-dollar Lotto jackpot.  Of course its wise to research your options and be very particular about- not only the treatment you choose, but the doctor(s) who will be in charge of that treatment.  However, consulting doctor after octor in order to find the 'perfect' approach to your treatment can become not only tiring, but confusing.  It comes down to simply taking a risk.  No doctor can guarantee the outcome of any procedure.  If they could, they would be a magician, not a doctor.

Jim -

as always, very wise post.  Actually all your points in this post have a lot of merit, but IMO especially the paragraph I've quoted above.

I couldn't have said it any better myself.

Nancy -

I was going to give you my take on your dilemma, but I'd be just repeating word for word what Jim said.

Jan

[Nancy Drew]

Well, as usual you guys are all wise, and I did "listen" to what you had to say.  As I was reading this post my doctor's office called.  The nurse practitioner said my doctor had spoken to the second opinion doctor on Monday.  The second opinion doc said he agreed with my AN doctor, gamma knife or W & W.  But, initially my AN doc said GK, but the nurse came back and asked which one I wanted to do.  I tried to weigh my odds with her, and she agreed that my hearing test wasn't all that bad and from looking at my balance test it didn't seem that I had any balance problems caused by my AN.  The audiologist just called while I was writing this also and confirmed that the balance test was essentially normal--just a problem with tracking but not related to the AN (but, she couldn't tell me what the tracking thing was related to!)  After all was said and done, I figure my best bet is to W & W.  The nurse suggested I have another MRI  and hearing test in Nov., and I told her I would feel better going that route instead of waiting until May 2009.  My AN doc is in surgery today so the nurse said he will probably give me a call tomorrow to check everything out with me to see if I am comfortable with my options.  So, I think I will probably go back on the W & W list for now and wait until November.  Think I might take a break from this board for awhile as suggested.  Anyone who wants to send a PM is welcome to do so.  Feeling sort of relieved at least for now.  Thanks everyone for your support, your encouragement and all of the information and feedback you have shared with me thest past could of months as  I have been going through this decision process. 

Nancy Drew (detective in training)

On vacation until further notice!!!

Gloriann,

Before I sign off I wanted to tell you that my AN doctor and the doctor I saw for the second opinion are Otology/Neurotology doctors.  Both do radiation and surgery.  As for the panel that my case was presented to for GK review, I have no idea what kind of doctors they were only that my doctor was the only surgeon on the panel.

[Gloriann]

This must take a load off your shoulders, receiving these phone calls!

Now you can take that break and not give this another thought until November.

Two years ago when I found out that my tumor had retunred (small piece that was left during surgery) I was shocked and also angry for awhile. I was extremely angry with mu doctor (neurosurgeon) for telling me I did not need to come back to his office or have any more MRI's done because all that was there was scar tissue. I found out that the radiologist reported the tumor had reoccurred, when I asked for a copy of that report one day when I was at the hospital. This was after my doctor had released me. I called his office and found out he had received this report after I left, but he disagreed with it. That's when I got angry! To think that he was not even going to inform me about it. I thought the least he could do was say to have another MRI in a year to make sure.

After seeing a different doctor (also a neurosurgeon) all he said was to come back in 2 years for another MRI, so for two years I really and truly put this out of my mind. I had other things to think about. Since my husband retired from his job, we began to do some traveling. Then my 32 year old daughter-in-law died suddenly in her sleep (cardiomyopathy) so I got busy helping my son with his 2 children.

Now that I have seen the doctor again (second neurosurgeon) I have had some more stressful days, because he finally confirmed the fact that this is not scar tissue, but is a recurrent tumor. But there are a lot of other days that I feel okay about this and believe that God is going to get me through this. My faith, friends, church, relatives and this forum is what is keeping me going. I think about how fortunate I am in so many ways and when I look around I can see others who have a lot worse to deal with than I do. I just thank God all the time that this is not a malignant tumor!

Take care, Nancy, and enjoy that beautiful mountain scenery there in Colorado! Wow!

[sabuck]

Jim,

I just wanted to say what a wonderful, well-said response for Nancy. I think that you and Steve should just be our "go-to" guys when somebody is in a pickle... no wait that is ALL of us. Anyhow, I am here clapping! Nice job. Nancy, try to relax if you can. I swear I know exactly what you are going through just like everyone else here. Please read and re-read Jim's post. Gotta go buy my losing lottery ticket soon. 

[Nancy Drew]

You had to know that I would have to peek!  I'll check in from time to time, and if I can add anything that might be helpful, I'll "chirp" in.  Of course, when I have my MRI and hearing test in Nov., I'll drop in and give an update.  Hopefully once Nov. comes around I'll continue to be on the W & W list.  Best wishes to all of you who come to this forum to give and receive support and guidance.  I feel like all of you have helped me light up this dark path I have been traveling.  And, yes I will keep Jim's post to reread from time to time.  It helped a lot as far as putting things in perspective.  Blessing to all of you.

Nancy

[leapyrtwins]

Nancy -

I'm thinking your "vacation" is kind of like Phyl's "hiatus" 

Jan

[Mickey]

Hi Nancy! I can see what your going thru. I`m going thru something similiar my AN is .12mmX.06mm. It`s been a about a year since diognosis but I`m sure Iv`e had it for MANY years. I`ve basically decided to watch and wait and let the mri tell me what to do. So far stable. Symptoms are present like tinnitus (doing neuromonics to help) very small high pitch hearing loss, some aura headachs which I don`t know if related. Anyhow I have spoken to people ANA N. J. who have been watch and wait for many years. One person into his 80`s for close to 20 years. I`m starting out around 59. In your case your much younger and your AN a bit smaller. I Do believe you have the luxury to take your time. I keep trying to tell myself that also but it`s not easy. I guess what will make the final decision with me will be will the benifits of having it taken care of be better than how I presently feel. Right now if I could stay at this level  I can deal with it ok. From all I read after the operation no gaurentees of relieving the symptoms, but tumor`s gone and hopefully won`t come back. Hope this opinion will be helpful! With a little luck may be more discoveries on AN`s in future. Good Luck, Mickey P.S. Prayers are with you!

[sgerrard]

After all was said and done, I figure my best bet is to W & W. 
The nurse suggested I have another MRI  and hearing test in Nov.
Nancy Drew (detective in training)
On vacation until further notice!!!

Good call! I think you did a fine job sorting it out, and have arrived at a good decision. Enjoy your summer.

Steve

[Jim Scott]

Nancy:

I applaud your decisions and truly hope you can find some solace now as you take a much-needed break from these forums and the whole 'AN thing' that has been bedeviling you these many weeks.  If my words helped, all the better.  Have a great 'vacation'. 

Jim