dealing with spouse who has AN

[becknell]

I have made a few posts here, but I need to get advice on my overall problem. It's in helping my spouse, who has a 3 cm AN. I've done all the research, made the appointments and questioned the doctors. I've done quite a bit of research in the 8 days since we learned of his condition. The problem is his reaction to all  this is sort of denial or avoidance. He wants to get it over with, he's disturbed about the vast differences in opinion and treatment and he's overwhelmed. And he doesn't want to read about it, talk about it or think about it. He gets aggravated when I try to talk about it with him. He told me he's depending on me to deal with the information. And I'm a journalist, so that's what I do. I don't mind, because I love him. I want him to have the best. We're going to get a 2nd opinion (which he agreed to very, very reluctantly after I pushed and pushed) and when I suggested getting a third opinion he looked at me like I was nut and said, “When is this going to end?â€? I realize this reaction is completely NORMAL and that its very disrubring to listen to someone discuss how they're going to CUT YOUR HEAD OPEN. ICK!!!!! But I know it's ESSENTIAL that we ask these questions. I sugggested sending his films to LA to House and he said, No, I'm not going to LA. I told him we could do that, I would do that for him, I told him that it was POSSIBLE, even though we live in South Carolin and it would be a cross-coutntry trip. He said No. HELP!!!! I realize people have totally different reactions to this, that his reaction is to bury his head in the sand and my reaction is to seek information and try to learn. I told him we're not the only people doing this, dealing with this, but he hasn't bothered to visit this message board or any other message board or call the names I got from the AN Association. I just need to share on this and see what advice you have. How can I best help him without driving him nuts? Jennifer

[GM]

First of all...you have shown your love for your husband by doing what you have done for him with your research.  But...only he can make this decision now.  He may be scared, in denial, or what ever...but only he can make this decision to take the next step.  I remember when I told a few friends about my AN, I actually got different responses on how they would have handled it.  My fiance said that she just would have cried, a friend said that he wouldn't have done anything at all (he's NF-2 by the way...prone to AN's but he doesn't know that).  My suggestion is...and this is going to be hard to do....just stop.  The more you push him, the more he'll resist.  Just let him know that you're there for him when he makes this decision.  And it's not an easy one to make!  Do you choose surgery and potentially lose your hearing and facial movements, or choose radiation and  maybe not fix it and face the potential difficult surgery after exposing the tumnor to radiation, or  just watch and wait wondering if one day you'll wake up and not be able to stop the twitches in your face or wake up deaf.  It's scary and not easy..but..after making a decision, a peace comes over you.  You've finally have chosen a way to deal with this.  You've done all that you can, don't feel guilty, that just not fair to you.  You can't handcuff him and drag him..what else can you do???  Just let him know that you love him and will be there when he is ready to deal with this and back off.  He'll quickly realize what you've done for him and the love you've shown, he may even share his feelings about the AN.

Gary

[kstanley]

It really sounds like you are doing research and that is the best thing you can do!  I am 19 and was diagnosed with an AN in February and had the trans-lab surgery on March 31st.  I understand how your husband is feeling and can definately say that at times I felt just like him and did not want to go to anymore doctors appointments or hear anything else about my tumor.  I think what you and your husband are going through right now is the hardest part of the process.  It is extremely stressful to go meet with different doctors and hear about all of the things that can happen.  It is even harder to try and decide which doctor and what approach to use. 

My parents and I met with 3 different teams of doctors at the Houston Medical Center.  Each appointment was stressful and nervewracking  but looking back on it, I'm really glad that my parents made all of those appoitntments because we learned so much about acoustic neuromas and were able to ask so many questions.  My mom ended up sending a copy of my MRI's out to the House Clinic and she and my dad talked to some of the doctors from there on the phone.  After having various phone conversation, my parents decided that it would be best for me to have my surgery done at House.  I reacted just like your husband feels now and said that I did not want to fly all the way out to L.A. to have surgery.  I felt like we had wasted all of our time meeting with the doctors in Houston and how could I go and have surgery with people that they've only spoken to on the phone!  My parents convinced me that it was the best idea and explained to me how they felt more comfortable with the doctors at House especially since they were so much more experienced with acoustic neuromas.  I remember waking up after surgery feeling so grateful to my parents for doing all of the research which led us to finding the right doctors because everything turned out fine.  I am not saying that you have to go out to the House Clinic for surgery, but I do think you should continue researching.  I would seek a second opinion and meet with some more doctors.  Try to explain to him that if he just picks the first doctor he's met just because he doesn't want to hear what other doctors have to say, he could regret it in the end.  Dealing with an acoustic neuroma is hard, but the good thing is there are a lot of doctors out there who can remove them and afterwards most people can go on with their normal life. 

Before surgery, I didn't really want to go on this message board either or call the people who had dealt with AN's.  I guess I was just nervous and didn't want to find out about bad experiences.  My mom did most of the reading on here and she would call people and ask a lot of questions about there experiences.  She would tell me about the people she talked to and it was really helpful because it showed that people can and do get through this.  If you have people's numbers and you are curious, I would call them yourself and ask questions.  If you find out about some good experiences and share them with your husband maybe he will be more willing to meet with some more doctors to make sure that he has a good outcome himself.  Keep reading on these boards and asking questions because there a bunch of people who are willing to help and give advice.  Good luck with everything!
-Kara

[rebecca]

Hi,

If you can afford it, I say go for it and go to LA.  Tell him to stop being a Mr. Crabs and listen to you since you've done all the research and afterward, you can have a second honeymoon in Southern California.  Maybe, go out to dinner at Spago or Chinois on Main in Santa Monica (if he's up to it) or just relax in a hotel by the beach for a couple of days before heading back.

Men can be so stubborn (and I don't mean this in a bad way)--but, I know where you're coming from.  I had my surgery done here in San Diego, with some wonderful Kaiser doctors.  They are well aware of and consult with the House surgeons.  You've got nothing to lose and everything to gain--in my opinion--which of course is not worth anything!

And as for him saying, when's it going to stop--tell him--when he listens to you!!!!

Good luck.