Help! Getting different stories from different docs!

[spgreenfield]

I unfortunately allowed myself to be railroaded into scheduling surgery quickly - like in 2 weeks!  I'm having second thoughts now that I've finally gotten a second opinion about the approach.  One doc is giving me hope for hearing - the other is saying 100% chance of SSD.  I allowed my husband to force me into a surgical date before we even had another opinion!

Pam

[CHD63]

Pam .....

No one should be talking you into or out of anything.  This is your head and your AN.  It should be a very personal decision, with input from many trusted sources.  If you feel in your gut, this is not right, you need to say so to your husband and your doctor.

However, the other part of that is ...... if you are having facial nerve symptoms, you do not want to wait too long for treatment.

Many thoughts and prayers for peace with your decision, whatever that may be.

Clarice

[RichB57]

The doctor that you have no chance of saving your hearing (I assume that's what you mean by "100% chance of SSD") must be recommending a translab procedure.  My understanding is that the ear is moved out of the way and the ear drum, hearing nerve, etc. are removed to get at the tumor.  This was what the first surgeon I was referred to suggested.  I got a second opinion from doctors at Mass General that recommended a retrosigmoid approach that enters the skull from behind the ear, and they said had a 50-50 chance of saving my hearing, and I chose this approach.  Unfortunately, I did lose my hearing during the surgery, and I've had one of the common outcomes of retrosigmoid surgery, headaches, since about five weeks post op.  They've gotten progressively worse and I wake up at night fairly often, with extreme pain, and have to take tylenol with codeine in order to bring the pain down to a level that I can tolerate enough to get back to sleep.  The pain never totally goes away.  I had been taking so many NSAID drugs (aspirin, ibuprofen, alleve) that my stomach was extremely upset to the point of eating became difficult and I've lost 20 lb.  My PCP has told me to only take tylenol, which I'm trying to do, and my stomach is feeling better but not great.

I know this is a bit long winded, but what I'm trying to say is that, unless your tumor is of the size that your health is in immediate danger due to something like pressure on your brain stem, you should take your time and do some research.  These tumors usually do not grow quickly, so you may have time to check out you options.  There is an enourmous amount of information in this forum.  I suggest you search the site to get as many of your questions answered as you can before you decide on how to proceed.  If your tumor is not growing, you may not need to have it removed at all.  My neurotologist has 1200 patients that are in the "watch and wait" mode, having periodic MRI's to keep make sure the tumor is not growing.

[spgreenfield]

Many thanks for the quick reply both of you!  My main concern is the whole "recovering over Christmas" issue as well.  I'm not keen on ruining Christmas because my husband is in such an all-fire hurry.  Plus we did EXACTLY what we're NOT supposed to do and that's make a decision without a second opinion.  I may still have the surgery at Mayo but I feel very rushed at the moment.  The surgeon that I spoke to said that my tumor is NOT in the canal - however - it's not going to be a problem if I wait until January....

Pam

[Archer]

Pam,
I have to agree with Clarice.  You need to feel confident and comfortable with your decision.  If you need another opinion, by all means get it.  Just get it soon in case time is an issue.  Looking at your previous posts it sounds like you're dealing with issues from the AN already. 

Talk this through with you husband and make sure he understands your feelings and misgivings.  As a caregiver he is hugely involved in this too.  My wife had a lot of say in how we dealt with my AN.  She has been a saint through everything I have put her through with this.  We saw that we needed to be partners through this ordeal.  We found out there is a good life after AN.  It may be different, but through the grace of God, it's  still good.

Wishing you the best and hope you can be comfortable with your choices and have the best outcome possible.

[Chances3]

Hi spgreenfield,

Welcome to ANA, you will find a lot of great info on this site if you spend some time and dig deep.  I hope you continue to hear from the more senior members, they have a wealth of knowledge, plenty of experiences and good advice.  You haven't told us much about your tumor, what affect it is having on you.  I'm concerned for you, because you seem to be rushing things.  If your operation doesn't go well, and you live with all kinds of problems, how will this affect your relationship with your husband?  Will you be angry with him, always blame him etc ?  Here's my two cents, if your health is not in jeopardy, I would cancel the operation and learn as much as you can.  If you chose surgery, than make a decision on a surgeon who has a great track record, and will give you the best chances for a normal recovery.  A recovery that perserves your facial muscles, hearing and balance.  You get 1 shot in surgery, make it a good one. 

FYI - I had a small tumor and I chose a middle fossa approach with Dr. Roland and Dr. Golfinos at NY Medical Center.  I did visit other surgeons, but I chose them for their experience, expertise and the chance to save my hearing.  I'm post surgery over 1 year, I still have balance issues, but I have hearing and full use of my facial muscles.

Keep in mind, everyone is different and we all come out of this differently.  The size and placement of your tumor will be a factor in what can be preserved.

I will pray that God shows you wisdom in making these decisions.

God Bless.

[spgreenfield]

Both surgeons that have given me their opinion have no problem with me waiting....a while - not "watch and wait" though.  Unfortunately my husband is used to me being very "in control" of everything - and he's also worried about how he will handle my surgery time and recovery.  I suspect he rushed me only because he's dreading what will happen and me, I worry that I'm rushing into the decision without fully investigating everything. To be honest, I'm having great relief at the thought of not having this done next week!

Pam

[james e]

It is your head...so use it!

Number 1...don't let your husband run (ruin) your life.

Number 2...forget about Christmas...it comes around once a year, and your health is more important.

Number 3...contact your doctors again, and discuss in DEPTH, why they have such different approaches to your surgery. I had 2 opinions and one was for radiation, and one was for translab surgery. I did lots of research on this site, had translab, saved my face, and I am SSD. My life is full of joy and happiness. You need to get more facts from your docs, and then YOU make up your mind. If your husband disagrees with your decision, let him know you will be in charge of his vasectomy.

James

[leapyrtwins]

AMEN to what James said.

Don't let your husband - or anyone else for that matter - talk you into anything.

My neurotologist couldn't stress enough to me that my treatment decision was MY choice and that it was MY decision.

As someone else mentioned, it's your head, your tumor, and your life.

Don't be rushed or pressured into treatment, unless your AN is so large that it's life-threatening (which would mean it's VERY large). 

You have time to investigate all your options, time to decide who will treat your AN, and how he/she will do that.  You must be 100% confident in what you are doing, and you have to be 100% confident in your doctor(s).   AN treatment decisions are very personal decisions and you'll know when your decision is right for you.

Follow your head, your heart, and your gut.

Tell your husband that you appreciate that's he's trying to help and that you know he loves you, but tell him in no uncertain terms to butt out!

Jan