Spousal Help!

[farah1978]

Hello, I understand that a lot of the people in this discussion forum are people who have or had Acoustic Neuromas, I however have not but my husband has.
I am asking for help as my husband and I are having severe difficulties trying to understand eathother, dealing and coping with this whole situation and and was wondering if there are any spouses or people in this forum who may be able to give me some advice.
To summarise our situation is like this, my husband is 31 and I am 28 and in October of 2006 my husband was diagnosed with an acoustic neuroma which was 4.8cm at it's longest crossection.  The diagnosis came as a complete shock as he had been losing his hearing on his left side gradually for the past 3 years and although he had been to several doctors in a couple of countries nobody detected anything.   It wasn't untill we moved to New York last year did his doctor suggest he go for an MRI.  Anyway beacuse of it's size they sheduled the operation immediately and he had it on November 1st 2006.  The operation was a complete sucess and they managed to remove everything without damaging his facial nerve.  As you all know the procedure is very invasive and long (almost 10 hours) and although a sucess nevertheless he sufferered and is suffering from several side effects such as complete hearing loss in left ear, constant headaches, dry eye in left eye, asymetric facial numbness, balance issues, depression plus he also had a cerebrospinal fluid leak which meant he had to have a spinal drain in his back for 5 days straight after the surgery.   So all in all the surgery and hospital stay was very harrowing.
Now I know most of you have your own and similar experiences so I don't want to go into too much detail so themain reason I am asking for help is beacause ever since my husband has been home from the surgery he feels like I wasn't emotionally there for him and we are constantly battling about our differences of opinion.  He says that after the diagnosis I ignored the situation and I didn't show any emotion and during his stay in hospital I was not attentive enough and now at home I do not ask enough questions about his health and don't seem to understand what he is going through which is completely right - I don't!  In my defense we have only been married for 2 years and we had no family or support network in New York so when I heard the diagnosis I went into practical mode and I couldn't let myself get emotionally wound up because it was the only way I knew how to deal with the situation, there wasn't any guide book to tell me what to do or say.  So I did the research, I talked to people (the few that I did know), I sought second opinions and the whole time in the hospital I did everything I could to try and make it as easy as possible for him.  It's true that ever since he has been home I have difficulty in understanding what he is going through and we are really stuggling.  He says he feels completely alone in this situation and that no one has been there for him the way he would expect them to. 
Is there anyone out there who can lend us some advice or share their similar experience?  We are at that stage now where he says it is "make or break ", he feels that if a situation like this cannot bring us together then what hope do we have!
Any advice would be much appreciated.
Spouse in need.
   

[Battyp]

HI Farrah,
  I didn't have a spouse through this but was a spouse when my husband went through cancer treatments so have a good idea of what you're going through.  I would suggest if you havent' already done so get some professional help to help sort out all the emotions and come to a concensus with everything that transpired.  It will help both of you immensely.

I'm sending you a PM as a follow up.

Hang in there!
Hugs Michelle

[jerseygirl]

Farah,

I had a huge (6x3x3cm) tumor removed 18 years ago at NYU at the age of 25 and felt exactly like your husband did. We were newly married and this was the greatest challenge we ever lived through as a couple. My surgery was deemed success as well except that I had all of the problems that your husband has now. The tumors this huge press on the brainstem and cerebellum and the surgery necesserily involves them while removing the tumor. The compressed tissue then slowly returns to the original position. This sometimes causes cognitive-affective symptoms, like irritability, mood disturbances, trouble understanding people and situations and a whole host of other things. Now these symptoms are not as severe after AN surgery than after some other brain surgery because the brain tissue itself is not cut into because ANs are usually well-encapsulated and have to be peeled off from the brain as opposed to some other tumors with tentacles going into the brain, so removing those does a lot more damage. So, while your husband did not undergo personality change, his irritability is nevertheless very severe.

What helped me most was medication, Prozac in my case. It makes a lot of sense because brainstem manufactures the body's supply of serotonin which disturbance is implicated in depression. Prozac and a lot of other anti-depressants act on this sytem. Looking back, if I knew then what I know now, I would have started it right away. It had to actually get to the point of the suicide ideation that I ended up in the psychiatrist's office and got the prescription for Prozac. It absolutely saved my life and my marriage and it gave me an ability to accept my new self, deal with my new problems and somehow move forward. Things just did not seem so dark and hopeless anymore. I took it for two years and was back on track after that.

Now I am facing another surgery due to the recurrence and joining this group is the best thing I have done. There is just the most wonderful, accepting group of people here! There is no way my husband can understand everything I can possibly feel and go through and now I don't expect him to either. I know he is worried sick and is willing to follow me anywhere I chose to go for the treatment regardless of his own personal beliefs about what I should do. That is more than enough for me.

I hope your husband joins us! Best of luck to you both!

                                                Eve

[Joef]

Yes ! .. get him to sign on!

[Gennysmom]

Hi Farah,

Sorry, I'm a surgical patient as well, and can tell you that I went through a long period of taking things literally rather than being intuitive about them, which led to a multitude of misunderstandings.  I finally went on Prozac as well because of the anxiety attacks I was having....I hit a real low point at about this stage that your husband is in after my surgery.  My guess is that you went into practical mode because you knew he was worried enough for the both of you about his surgery, and you wanted to be strong for him....that's what my boyfriend did.  After surgery, you feel different, you don't feel normal, and I think it would be easy to push people away because of the way you feel...it takes a long while before intimacy comes back into the picture, and especially if someone had a strong personality, it can leave you lacking confidence.  Professional help and medication aside, I think the best loving thing my boyfriend does is constantly assist me...automatically walks on my good side, gives a hand if I wobble, and makes me feel safe out there in a world that I'm relearning.  He doesn't understand it, but he notices and that means the world to me.

Recently, I've been touting Suzy Becker's book "I had brain surgery, what's your excuse", but I really think that's the best way for someone to understand what it feels like to have your brain opened.  Even if you have a good outcome, it's a big deal.  

Feel free to send me a personal message, I'd be happy to talk to you guys.  It's a shame it's, to him, at "make or break", and I'm wondering if he's just pushing you away on purpose because he's "not who he was before surgery", and he doesn't think he deserves you, or that you deserve someone "normal".  

[Denise]

Hello and Welcome Farah1978,
I am not married, but have a boyfriend who has stayed beside me through my AN journey.  Like your husband I had a large tumor. The road from diagnosis to removal was extremely short.  I didn't and still don't always feel like my boyfriend understands what went on or is still going on with me, which unfortunately has resulted in many arguments and much stress at home. I also had an 18 year old who was rebelling and out of control to deal with during my recovery. It has taken me a long time to realize that while I had the AN it not only affected me but those around me. I am thankful that my sons and my boyfriend have hung in there with me.  Don't get me wrong there are still issues at times, but it is getting better.  
I did go to some counseling on my own, which helped me.  Another thing that really helped me was this website.   I have been able to connect with some really GREAT people, who have been supportive and who have helped me immensely.  It is a good place to vent when your or your husband is frustrated. It is also a very good place to get ideas on how to deal with some of the ongoing results of surgery, those you were expecting and the one's you weren't.
So recommend this site to your husband, and Farah, you should continue to use it too. There are many many people here who are willing to lend support to both of you.
I wish you both the best and am here if you need anything.
Denise

[redgrl]

This is a hard time for both of you. I can't beleive somedays that my husband is still here. I look different and definetly don't feel the same. I cry alot and hate looking in the mirror. It's getting better though. It's hard to step outside and see what your spouse sees. But sometimes you have to. Just be who you always have been and remember all the reasons of why you are married in the first place. Just being there and supportive goes along way. I can't imagine what its likes to take care of someone. Or what my husband thinks. He is a quite and none facial expression person so it's hard to read him. Take care of yourself and try not to be hard on yourself. If you need anything please feel free to contact me anytime. 

[farah1978]

Thank you ALL so much for your wonderful replies and sharing your experiences.  It has made me feel a lot more confident about our situation.  My husband has been a member for a while so I hope we can both use this as a tool to work through our differences.  I probably should have joined a lot earlier then maybe we wouldn't be having these issues now.  I really want to work things out but definitely feel that a third party would be helpful.  So if anyone does know of a counsellor with experience with this type of situation in the Manhattan area I would really appreciate to find out.  If not then at know what is the best way to find one.
Thanks again so much, I'll try to write again tomorrow (and get some work done in the meantime).
Happy Valentines to you All 
Farah

[Joef]

Farah , I'm in CT .. do you live in the city or are you up here? ... It might help if he met someone with a AN! ... A bunch of us meet for lunch in Mass (our next one is this spring)... your both welcome to come! .. I'll even drive you - if we meet in CT somewhere...

[LarryS]

Farah - I am the wife of LarryS. We have been married for 37 years this next May. We never had anything in all those years to hit us like this tumor thing. It was as if somebody hit is in the stomach with a baseball bat. I work full time and was trying to get all his paperwork taken care of as the railroad put him on disability and nobody ever gave us lessons on all this paperwork. Anyway, I love my husband dearly and felt as if it had happened to me to. I went with him to all his doctor visits, MRI scans, etc. We were in this together and we had our faith in God. I had never been around anyone with such a serious problem but somehow I knew that it would work out. I love him enough to take him in any condition. Anyway, denial and anger are easy to come and fall prey to but you just keep putting one foot in front of the other and take each day as it comes. You sit in that hospital and read, and make friends, and read, and pray, and read. Nothing about the whole thing is easy but without God, I don't know how people can get through this very easily. My doctor also put me on Prozac. She is married to one of Larry's doctors and knew what we were going through. Please let me know if there is anyway I can help you. Just getting on here and spilling out your thoughts is a great help and hearing from others who have walked this walk helps immensely.
Linda

[Pembo]

Another patient here....but I can relate to your husband's feelings. It was so hard to deal with all the emotions of this ordeal, I lashed out at everyone. The smallest thing would make me so angry. My husband took the brunt of it. He learned to listen to me when I was raging. It was a tough time and we have 3 kids so that made things even tougher. Even now, 2 1/2 yrs later I still have "those" days.

I just read the book "I had brain surgery, what's your excuse?". And I made my husband read it. Even though the author had a different kind of tumor many of the emotions were the same. Look for it at your local library. I would think a counselor who has experience with couples that face any kind of major illness would be able to help both of you. Also after this experience I went thru the stages of grief and had symptoms of post traumatic stress syndrome. Reading up on those will help as well.

We An'ers go through a lot emotionally and our loved ones do too. It is a very hard time!!! Just take it one day at a time. Best of luck to you both.

[Stevey]

Hey hang in there,
I am three weeks post op and driving my wife of 8 years nuts, this is a supportive place and so are the actual regional supprt grups from ana please get help, any kind that yu think can do the trick, We use ur church, I have used a therapist to deal with this and the loss of bth my parents to cancer and my sister's duble mastectomy..  Love is always worth it .
God Bless and persevere,
Steve

[MCLARKE46319]

Glad I came on here today...My 25 yr ol daughter had an AN operation 2 months ago and yesterday she told me I was not compassionate to her.  I have been by her side night and day and this really hurt.  I am living at her house and go home on the weekends to see my husband.  I realize that by reading this that she didn't mean it and is just depressed about everything.  It is so hard to see your daughter hurting like this and in some ways you can't do anything about it.

I am a firm believer in getting help and talking to a counselor when you need help so I will recommend this to her and also
see that she gets on here to vent.

Hang in there and maybe talking to a professional will help.

mclarke

[mykey]

Hi Farah.  My name is Lisa and my husband was diagnosed with his AN about 1 1/2 months ago.  We have been married for 15 years.  When we were only 6 months married, he had an emergency appendectomy that went bad, and proceeded to have many hospitalizations over the next six months and 2 additional surgeries (the last of which was on our 1 year anniversary!)  I was only 26 at the time and remember feeling like I had been left out on this island, with nobody to tell me what to do or how to handle it all.  I was calling his clients and rearranging schedules, dealing with the doctors and insurance companies, plus working full time while it was going on.  I just tried to keep things moving to keep myself from falling apart.  We both made it through, and realized that so much about who we were and how we viewed life changed during this very short period of time.

Since, he's dealt with alot and I have not always been able to understand how or why he feels the way he does.  It makes for some challenging times.  I have always tried to hang in there as best I can, and remember that it is not "him" or "me", but the situation that has him depressed or upset...that he is trying to deal with what life has dealt.  I know how hard it is for you, because YOUR life has changed too, and not everyone realizes that, or how hard it is to be a caregiver and to be supportive all the time.  You feel like you should be allowed to be depressed too, but feel bad or self-centered for doing so.  Yes, it is important for you to be there for him and try to understand as best you can, but it is also so important for you to take care of YOU during this tough time too.  Talk to family or friends, or seek someone professional to talk to.  Finding someone you can talk to helps you face the next day and be more understanding with him.  In time I hope that he will see and appreciate that you are there for him, and if so, you will find that your relationship will be stronger because you will have grown together.  It just takes time.

So now, as we begin to deal with my hubby's AN (of which he has just decided to have surgically removed in the coming month or so), I can tell you it isn't any easier for either of us to deal with, but I try to just take a deep breath each day and ask for guidance from above to help us choose the right path to take.  Have faith - it's a long road but one that is worth - and much easier -  traveling together. Hang in there.

mykey's wifey

[farah1978]

Dear All,

I'm sorry I have not written in such a long time but my situation seemed to worsen since I last wrote.  The last time was Valentine's day and when I got home from work my husband and I probably had the worse fight since this whole ordeal began.  We both have some how deteriorated in the past few weeks and for the first time I felt like I cannot continue in this relationship.
Anyway last week we started counselling and it seemed to make a difference but then we had another fight over the weekend.  It constantly feels like we go 2 steps forward and 10 steps back every time things start to improve.  I know it is very early days (4 months since surgery) but like Lisa (Mykey's wife) mentioned being the caregiver and being supportive all the time is so exhausting. The worse part about it all is that he blames me for things I did unintentionally, the way I dealt with diagnosis, treatment and recovery was all "wrong" apparently and to him it seems obvious what I should have done.  It's so frustrating because I say if I could go back in time I would do all these things differently but at the time I did what I though was the best I could considering I had never dealt with anything like this before in my life.  He still says it will take time for him to accept these "things" I did and his friends and family did but in the meantime he keeps pushing me away because he is still angry.  I want nothing more than to hug him and kiss him but the more he pushes me away the less inclined I am to do those things.  It feels terrible to have to ask your husband for a hug or have him wipe your kisses off his face or have him be irritated when you call him from work twice a day to see how he is.  I will persevere and continue to show my love as I am his wife but what scares me the most is that he has aslo confronted his friends about his anger towards them during this whole ordeal for which they have apologised and promise to make up to him however if he also pushes them away and rejects there advances to make up for their misgivings they might not keep coming back.  The good part about confronting his friends and family now means that I have soemone to share my thoughts and feelings with on a daily basis plus I now no longer have to suffer my husband's anger towards them directed to me anymore.
   
Thank you all for sharing your thoughts and experiences, it definitely helps me.  I was just wondering if any of you have also had this similar feeling of not enjoying life anymore after the surgery?  My husband says he no longer takes any pleasure in anything and all he can do is focus on the negatives such as the nightmare he is living rather than the positives of having a sucessful surgery and not having facial palsy.  Is this something that is common and if so is it temporary?  If he continues to think about all the bad things and none of the good things I feel like it will consume him and he will be bitter and angry forever but if I dare say the sentence "think positivley", he just lashes out and says he wants to punch something when he hears that.  It sounds terrible but I sometimes feel like I have been widowed because the husband I married has gone and I can't see him coming back any time soon.  Gone seem the days he made jokes and was all loving, caring and fun.

I understand that this is a very long process and I can't expect miracles overnight but I am continuing to do everything possible to improve matters such as going to therapy, definitely  making sure we can attend the next local support group meeting in NJ at the end of April, reading and adding posts on this forum which certainly helps me to get things off my chest.  I have also started to read "I had brain surgery, what's your excuse?" as suggested by Pembo which has been really great at showing me how similar people's reactions are to this very specific situation, so thank you for that Pembo!

All in all, I hope all of you who are awaiting surgery and are in recovery and especially the caregivers are staying strong.  So many of you tell me these very hopeful stories about how in the long run this situation has brought partners and loved ones closer together which is something that I keep on reminding myself of.  I hope that one day I can be one those people writing a post on here to help another spouse in need.

Thanks again to all of you,

Farah