new here & need advice

[alwaysthere]

Hello to all,
 I was told in Jan that I had this tumor in my head, but it was nothing to worry about and was a non-issue. This by a neurosurgeon. So I went to another Dr. and found out that it was 1.6x1.2x1.1cm. It has started to affect my hearing on the left side and my balance. I am now having pains in the side of my head and the left side of my face feels numb and tingling off and on. After doing alot of reseach I decided that the best place for me is Mayo Clinic. I live in Missouri and I feel there just are not the right Dr's for this type of tumor. So I have an appt on May 5th in Rochester, Mn a 10 hr drive from our home. To me, this is worth it because it is my head and my brain.
  What I am having a hard time with right now is the insensitive of my two brothers. We have already lost one brother and both parents, so we three are all there is. One brother lives in Dallas, Tx. Jokely I asked if I had to have surgery if that warrants a visit from him. His response was "If I had a heart attack would you come down Here?" I said "Hell yes, you are my brother". It's not like he can't get off work or has plenty of vacation. If he can go to Vegas several times a year and go to Oregon to his in-laws several times a year, Then it should not be a problem. My brother that lives in the same town has I do flat told me that he would't be there, cause he didn't have time. Now this one has been in the medical field for 30+ years and has said some pretty hurtful things to me during all this. I told my husband that if my brothers didn't care enough about me then they didn't deserve to know what was going on. Am I wrong for feeling this way? They can take time for themselves and other people but not for their only sisiter? I've always been there for them and this really hurts. Why is it your own family that hurts you the most? I need advice.

Patty

[Jim Scott]

Patty ~

Welcome to our website and thanks for joining and posting your message, although I'm sure you would rather not have an acoustic neuroma to deal with and the stress of insensitive relatives that seems to be making the already-difficult experience even harder for you.

I believe your decision to be treated at the Mayo clinic is a good one and of course, I wish you a very successful surgery.  I don't quite understand the neurosurgeon you first encountered and his casual attitude toward your AN diagnosis.  Perhaps the fact that an AN is almost always benign or that yours was tiny motivated his apparent nonchalant attitude.  You were wise to find another doctor. 

The issue with your brothers is a tough one.  I've found that simply having the same parents does not automatically mean a close and loving bond will develop between siblings.  In addition, once siblings move away from each other and began careers, marry and have families, these pressures sometime make close relationships harder, because it takes time and effort to have a good, close relationship, especially between family members.  Frankly, I get the distinct impression that your relationship with your two brothers was never all that idyllic and time has not helped things at all, nor has the death of another sibling.  Your brothers, like most of us, are self-centered to a point and obviously do not feel much motivation to support you in this medical adventure you're about to begin.  I doubt it's because they hold some grudge against you or are bad people, just more concerned with their own lives than with your problems.  That may change.  However, while fretting about it, feeling hurt and getting angry are all normal reactions, they will get you nowhere.  Your brothers will very likely become defensive if you demand their attention and support - and you still won't get it.  You'll be stressed and upset and have nothing to show for all your angst.  In my opinion, it simply isn't worth it, Patty.

I would lean on your own immediate family and close friends for support and simply ignore your brothers unless they ask about your condition.  You can't realistically demand their support, so why worry about it?  Once they learn that this is a serious operation they may get over their self-centered attitude and respond to you in a more compassionate manner - but maybe not.  You can't depend on them, so proceed accordingly - without their support. 

Please know that there are many, many people posting here that have been where you are now (an AN diagnosis, contemplating surgery) and we all want to reach out and support you in whatever way we can.  I'm one of them and I trust my advice will be of some benefit to you. 

Jim

[Syl]

Patty:

We're here for you. As for your brothers, their attitude and behavior is very hurtful.
I have some siblings and a parent that were not there for me. Luckily, my family is big and the other siblings and the other parent were there for me. Before my surgery, I knew that I wouldn't be able to count on some of them. I went ahead and told all of them about my tumor and left it up to them to do as they chose. They can't complain that I didn't tell them anything about my AN.

Something I've said many times is that I'm glad the ones that didn't want to help or didn't care stayed out of my way so I could heal. I will forever be grateful to those who did care.

Syl

[Cheryl R]

Patty,     There is a very good hospital closer to Missouri.     Unirversity of Iowa Hospitals and Clinics  have a super,super neuroologist who does ANs on a weekly basis.     Dr Bruce Gantz.     www.uihealthcare.com               UIHC has been rated no 2 in Ear,Nose and Throat for the last 2 years from US News and World Report hospital ratings.       Mayos is no 8.         I have heard that UIHC does more ANs than Mayos but do not know if this accurate.     Mayos does approve of some radiation while Iowa is not big on it.     There have been many of ANers who have been to Iowa.                  Doglover and yogstar5 besides me, just lately.            I had my first AN surgery in 2001.      2003 we found an AN on the other side which makes me have NF2.        I had a facial neuroma in 2006 with a nerve graft from by the ear done at the same time.     I did have facial improvement over time.               I was next to deaf a year ago and had AN surgery on the other side last year on April 17th and we expected to do a cochlear implant a month later.      My hearing improved greatly and I did not need the  CI.                  I feel very lucky we have this in Iowa.          I have known over time others who have left the forum as they have done well and back to life again.     There is another gal here who has her surgery in a couple weeks.           
I think it would be worth it to check into UIHC also.                              I know there has been someone who is going to see a dr at Washington University in St Louis also.                         Good luck and feel free to ask what questions you need.     It is a scary time to find out that one has a brain tumor even if they are benign.                   
                                                        Cheryl R

[Kathy M]

Hi Patty,

I'm so sorry to hear about your diagnosis and the reactions of your family.  It's stressful enough even when you have support of your family.  I can relate, so if it helps, you're not alone with the family issues.  My mom, who is a wonderful person, but filled with insecurities and fear of being sick, AND...who lives less than a mile from my house has visited me only 2 times since my surgery in January.   I have had a problem with infections so that is her excuse for not visiting me (she says she doesn't want to bring in any germs - but the reality is that she is afraid of her getting an infection).  I don't think I would have seen her more even if I didn't have infections!  It's the way she's cut, that's who she is, and it has taken me a very long time to realize that.

I was very hurt by her lack of what I thought good mothers did when their daughters were facing surgery and related health issues  - even at Thanksgiving (just after my diagnosis), all she could talk about was herself, her problems, how she hated living where she was living, and nothing about me or any caring words at all.  Thanksgiving evening I was so depressed - she really dropped me like a rock.  I decided right then and there that I couldn't let this get to me...that I needed only positive energy (I've learned that from wonderful folks here), so once I had that resolve, I came out of the really bad funk!

That said, I know she loves me in "her" way...albeit, not how I've defined how she should be.  And, truth be told, she would have been no comfort to me, as she is giving me all she can.  I found others (friends, husband, children, in-laws, brothers & sisters-in-laws) to draw positive energy from and who love me as I needed to be loved and supported.  Perhaps your brothers are giving all they can, too, and just don't know any other way.  My brother, unfortunately, has much that same capacity as my mom, and he has called me a few times asking how I am and that's about it.  He lives 6 hours away, has a family, and it would be a hardship for him to come here around the time of my surgery.  Ah well.

Don't know if this helps at all, but I know how much it hurts and hope you find that place where you can forgive, do what you need to do for you, and surround yourself with the most positive people you can to help prepare you for your surgery and recovery.

Kathy

[leapyrtwins]

Patty -

sorry to hear about your sibling situation.  We all have or had toxic people in our lives - I know, I was married to one for almost 22 years - but sometimes it's just best to let go.

You have enough to worry about with making decisions related to your AN.  IMO you need to focus on you - not on them and their unacceptable behavior.  Do you have a spouse, a close neighbor, or a friend you can lean on for support?  We're all here for you, but it's a little different when we don't live close to you.

Also, please check to see if there are local ANA support groups in your area.  There's information about support groups on the main page of the ANA website under "support".

The ANA also has a symposium every two years where AN patients, family members, doctors, etc., get together and care & share.  This year's symposium is in August in Chicago, lots of us will be there.  It would be great to meet you there if that works into your plans.

Hang in there, things will work out.

Jan

[EJTampa]

Hi Patty,
 
I can't add much to what you've already heard except that you are in our thoughts and our prayers.  My surgery was 4 weeks ago, and unlike you, I was never told it was nothing to worry about.  Symptoms will continue to get worse as the AN grows, so I have always believed it to be better to take care of it sooner than later.  Others with smaller tumors and not too many symptoms are able to watch and wait for a while.
 
I have nothing to add on your brothers.  Best to just go on with the support you have from those that do care.
 
Take care of yourself,
 
Ernie

[lori67]

Hi Patty.

I agree that your brothers are not playing nice.  Could it be that they're just more worried and scared about this whole thing than they care to admit?  I don't have brothers but I do have 3 sisters and they seemed to take my whole situation very lightly and didn't sound too concerned.  It wasn't until afterward that I found out how worried they were but they didn't want me to see them falling apart, because they know my nature is to be the strong one in the family that looks out for the rest of them (which is odd, because I'm the youngest).    Maybe they see you as the strong one and the protector/nurturer and don't want you to feel like you have to be in that role when you should be worried about yourself.

Either that or they're just not very nice to their sister - in which case, rely on your husband, your friends, whatever support group you have - and put your energy towards getting through this and taking care of yourself.  I've learned that sometimes we can't expect people to act the way we think they should or they same way we would if the situation were reversed.

And you've just been adopted by a very nice Forum Family -so you've now got more brother, sisters, moms, dads and crazy aunts than you ever wanted - and we'll be on your side and play nice!   

Good luck!
Lori

[moe]

Patty,
What great advice and insight from these  posts.

I come from a large catholic family, so growing up, we all just kind of fended for ourselves. I consider our family close, but looking back, everyone responded different to my diagnoses.
Some indifferent, some more responsive (one sister is a nurse).

Actually I found out about this tumor as I was leaving for KC (my home town)  for my dad's 80th birthday party. I told 2 sisters over the weekend, but didn't mention it to others until I got back. I sent out an email to my 7 siblings and my dad and the response was PATHETIC! I don't think I got one phone call. Not even my dad. (mom has passed away).
 Just an email back- "Oh no you poor thing. You are in our prayers"........kind of stuff......
 Ah the joy of un-personalized communication ! People do not understand. So I kept them all informed of everything through the ordeal and they eventually turned around with their lassez faire (?) attitude.

After my surgery, my hubby sent out group emails of my progress, and mentioned I wasn't taking phone calls because of the severe headache, and shortness of breath (lost a lot of blood). This prompted  my dad to actually call even though we said no phone calls. It finally clicked for him. This was about 6 days post op. I did talk to him, BTW!

So there are all sorts of sordid family stories out there. We are all dysfunctional in a way.

Sounds like your brother who lives in TX is just speaking out of ignorance of the situation- he doesn't understand the ramifications, or doesn't know what to say, so makes a "joke". I bet he comes around.  Or people just say nothing. Coping mechanism for them for your not so great health condition.
Sounds like your other brother is just being "not nice."
I would not exclude them from your progress/plans.
If you email each other, maybe just keep them notified. If they want to be involved they will.

Yep, you gotta hang out with the people who support you and provide positive energy.

The forum is great. I found it late after much craziness surrounding my AN, and I'm loving it.
Hope to hear from  you more
Maureen

[alwaysthere]

Thanks for all the support and for welcoming me into the fold. I have come to the conclusion that my brothers will be the way they are and I can't do anything about it. I will always be there for them no matter what, that's just the way I am. I really think my brother who lives here is greatly worried and is afraid of losing his little sister and the one who has always been the rock. But some of the things that have come out of his mouth has been really hurtful. It's hard not to let it get to me. My emotions since being told about the tumor have just been a mess. I cry at the drop of the hat. I think it's knowing what is wrong and what I will have to go thru and what could happen. I try very hard to look on the bright side of things, It could always be worse and there are people who are worse off than me. I thank God every morning I wake up to see another day. If it was not for my faith this certainly would be alot harder to handle. God Bless all of you.

Patty

[Sue]

I, too, would like to welcome you to the Forum.  I'm sorry about the family troubles.  I think you've gotten good advice from others.  Since I have no siblings, I won't offer any advice other than smacking them upside the head.    You should also do that to your first doctor too. Only a little harder.    I will suggest that you read this interesting article on how your balance system works.  I wish I'd read this at the beginning of my AN journey.  It really made clear to me that I was having symptoms long before I was aware of anything wrong with me.  You will have some of these things crop up eventually, and it's nice to understand why this is happening to you.  Our symptoms can sometimes be very subtle, and even though this doesn't tell you how to cope with it, it certainly explains why this is happening.  Anyway, I'm sure you'll find it enlightening.

http://www.hearinglosshelp.com/articles/balancesystem.htm

My only other advice is to make sure that you talk to doctors that will give you a clear and untarnished view of all of your treatment options.  If the treatment center you choose only does surgery then they probably won't be able to advise you properly on radio-surgical options, which are certainly viable for you since your AN is on the smaller size.  Sad to say, the burden is on you to do some research and to understand all the ramifications of each treatment.  There are effects from any treatment option and you need to clearly know what those are.  Most of the time patients "know" which way they want to jump.  It's a "follow your gut" kind of thing.  Also, each patient is different, and one person's horrible side effect is another person's non-issue. It's just really hard to predict that.  The best way to insure a successful outcome to to try to choose the best medical team and facility that you can.  Sounds like you are heading in the right direction already!

I do wish you all the best in your treatment and eventual recovery.  You might e-mail your brothers the link to the ANA  website so they can see for themselves what is going on.  We all would be happy to enlighten them!!   

Sue in Vancouver, WA USA

[Cheryl R]

I think some friends and family want us as the patient to tell them what we expect from them.                    In working as a nurse,I saw a huge variance in how family acted to a patient.               Just take care of yourself now!
                                                           Cheryl R

[sgerrard]

Well, we are always here.

Here is a hint for dealing with men who don't want to be emotionally supportive. Ask them for some kind of specific help instead. If you say to them "I will be fine, but I don't know how I will drive home from the hospital or be able to chop and haul the firewood," they may volunteer to help out, and wind up being supportive in the process. We tend to be more task oriented, and want to fix things and be helpful, not get all emotional about it. 

I really like Maureen's story about her dad, who didn't call until he received an email saying that she wasn't taking any phone calls due to headaches. Waiting until there are signs that something is actually wrong is exactly how the emergency response mechanism works in men. 

Best wishes as you consult with doctors and go forward with your treatment. I hope you get enough support from some of your family, anyway.

Steve

[Pembo]

I didn't read all the replies but I have 3 older brothers. 2 live within 10-15 mins from me, one in CA (I'm in Ohio). The CA brother flew to be with me the days before surgery and for 3 days after. My husband was so greatful for his support on surgery day. They both cried when he had to leave. He called numerous times everyday to get updates.

I was in the hospital and rehab for 16 days.

Brother #2 came to see me the night before surgery, it was awkward. His wife didn't say anything to me. We asked her to help with the kids and she had to "get ready for her garage sale". They visited once when I was in the hospital and a few times at home after surgery. Not very often.....

Brother #3 was forced to visit me at the hospital by his wife. My husband said he sat in the furthest corner of the room from me. I don't even remember him coming. I didn't see him for months after that. He lives 15 mins away, worked 10 mins away. His wife visited numerous times to the hospital and after I came home.

Family...you can't pick 'em. I discovered that many people are afraid of serious illness and stay away instead of facing their fears. I learned who I could count on (family and friends). I admit I carry the actions of people after my surgery with me to this day (5 years later).

Stay strong...lean on those who offer, leave the others.

[MAlegant]

I'm in total agreement with Pembo and with Jan.  Focus on your needs, and on the people you know you can count on, and don't let the others take one bit of your energy.  You need to be positive, and not worry about negative people.  Once surgery is over and you're recovered, you can tell them off. 
Best,
Marci