ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: farah1978 on February 14, 2007, 10:35:14 am
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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.
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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
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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
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Yes ! .. get him to sign on!
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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".
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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
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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. ;)
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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
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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...
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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
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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.
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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
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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
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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
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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
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Farah: I don't know what to say,
other than your husband is still very angry over having to deal with this nightmare
& is taking it out on you (we always let the anger out on the ones we love the most).
Can you go for therapy alone ? You also need to take care of yourself (I know therapy
isn't cheap). There's no right or wrong to what you're doing/not doing - that's just his anger coming out.
You've been dealing with this for 4+ months, I can't imagine what a strain it is for you (and him).
Please take care of yourself, keep a peaceful heart. Nancy
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Farah. Is your husband on any medication for depression? I would say that much of his anger and problems are coming from within him and no matter what you say or do,he will reject them as wrong. Also did he have an negative or angry type of personality before and this is just bringing it out even worse. Did he have a low frusration level also? I think men have a harder time with health issues and this goes against their thoughts they can handle anything that comes along, I had my first AN surgery in 2001 and always felt like it took a year to recover physically and a 2nd year to recover emotionally. I have no good answers for you except that I feel he needs personal help apart from any marriage counseling. Maybe even back off a bit from trying to "fix" him and be good to your self if this is possible.
Your situitation seems to be beyond the usual strain that a health issue puts on a marriage and hope you are able to get whatever help is needed to resolve it.
Good luck to you both. Cheryl R
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Farrah: I feel so sorry for you when you stated in your 2nd e-mail what you are having too go through. I want too share a story with you that may help and may not. I had radiation treatment in Baltimore,Maryland last summer> we frequently had too wait in this small lounge until it was our turn. People would come in and set and sometimes we would strike up a conversation and other times not. A guy and his wife would come in every day and he would just stare off into space and talk too know one. He seemed oblivious too us all. One day his wife says he comes home from treatment-slams the door-will not talk too her-and she does not see him for the rest of the evening. She was trying to be suportive but too no avail. So we tried too give her some advice and let him have his space for awhile. One day I started talking too him as patient too patient-trying too relate with him. He never said much so I felt I never hit a button with him. The next day he came for his treatment and wanted too talk to us. Apparently we had opened his door just a crack. They say patience is a virtue . Well this same lady writes us monthly from Baltimore. I am not trying to put a feather in my cap-but may I suggest-like others have a AN Support group where he can talk too others like him. When I had my first AN back in 1988 my doctor said it would take 6 months to feel somewhat normal-and like others said up too two years too get back to so called normal. I am on my 2nd go around with an AN because I am an NF2-had radiation on my only hearing ear and am close-not quite their of going completely deaf. If anyone thinks that is easy too endure-think again. However_I take it a day at a time. I hope you find the strength to hang in with your husband. The crack may open in his door too one day. Have faith that it will. God Bless-Ron.
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Farah- I don't know what to day to you- the other members of our website have given you great advise. I guess just keep up with the counseling. Please know that you have done nothing wrong though and I don't think your husband really means that utlimately. He's just frustrated with the situation. I think the caretaker takes the brunt of the stress- you feel helpless and you are trying to be supportive. Know that we are with you and your husband both through the proccess. I feel helpless trying to give you advise- however it sounds like you are taking the right steps- seeking counseling- getting your husband to talk to other AN'ers. Hang in there. Annie
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Farah,
I wish you well and applaud your peserverence, be sure to remember not to neglect your own needs. It is good that you have started counseling but sometimes it can take a while and sometimes more than one counselor choice. It sounds as if your husband is suffering much and we all can empathize with him here, but he may need to consider psych meds if counseling fails to meet his needs. I have been there for different reasons (death of mother during a stressful time, merger at work, purchase of first home and first pregnancy for us all in about 3 months, I lost my ability to focus completely and became really withdrawn). I wish you both the healing that you need to thrive, grow and heal.
God Bless you both,
Steve
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Hey Farah. Fawcett? lol
naw, well I am one of those angry husbands, Also work as a Therapist ;)
And ya, Life is a DOWNER when you loose half your HEAD from an amputation
. I yell at my wife when Angry, very touchy, I was in the OR, super sensitive too, I even yelled at her to get out of the room because I was in soo much dizzying pain!
Even though one does not see it, I am amputated. Left ear. Gone.
I am extra pissed at my boss or giving me a review, under "communication" she put, below standards.
Needs to listen better, improve understanding and follow directions.
you talk about wanting to bring a shotgun to work!
I am in the process of quitting my job and getting another.
your husband is going through a process that no one else near him is. so he will retreat to his own world.
It is VERY hard to explain to others what a life altering experience it is to have one of your senses taken from you.
He needs to visit this board.
send him to my site.
http://www.thestatus.com
visit a patient page
h username
biologyfly06 password
Also, If the Marriage was already on the rocks before the Diagnosis.
it makes it more difficult.
Try to automatically always be on his hearing side in public, parties, etc. Don't make it a "known" thing that you do it either. Let it come naturally. Don't try and do things for him that he can do himself.
I have known my wife for over 10 yrs, married for five.
I knew her 360 degrees around me STEREO SOUND ALL THE TIMEl
Half of her being has DIED to me due to that. and That Death, I am still adjusting to,
The Death of her being "auditorily" visible to me on my left.
it hurts.
Direction has died too.
not knowing where something is.
Depressed mood is common with hearing loss and there are many hear" on the boards adjusting to that.
You could say he's in Bereavement and dealing with- Kubler Ross, steps on the Dying Process.
1. Denial and Isolation: Used by almost all patients in some form. It is a usually temporary shock response to bad news. Isolation arises from people, even family members, avoiding the dying person. People can slip back into this stage when there are new developments or the person feels they can no longer cope.
2. Anger: Different ways of expression
-Anger at God: "Why me?" Feeling that others are more deserving.
-Envy of others: Other people don't seem to care, they are enjoying life while the dying person experiences pain. Others aren't dying.
-Projected on environment: Anger towards doctors, nurses, and families.
3. Bargaining: A brief stage, hard to study because it is often between patient and God.
-If God didn't respond to anger, maybe being "good" will work.
-Attempts to postpone: "If only I could live to see . . ."
4. Depression: Mourning for losses
-Reactive depression (past losses): loss of job, hobbies, mobility.
-Preparatory depression (losses yet to come): dependence on family,
etc.
5. Acceptance: This is not a "happy" stage, it is usually void of feelings. It takes a while to reach this stage and a person who fights until the end will not reach it. It consists of basically giving up and realizing that death is inevitable.
* Hope is an important aspect of all stages. A person's hope can help them through difficult times.
(copied pasted from google)
Most of us are in Step 4.
I was able to say goodbye to my hearing at least for 2 months b4 surgery.
I said goodbye to birds in the morning. everytime I could.
and the whisper of my wife in the nightime.everytime I could.
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Check to see if there are any AN support groups in your area. There should be a list here. But, you might also check with the place that did the procedure. They may have a list of groups.
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hey Farrah, I feel so bad for your situation. Not that many days ago I was very mad too. I had my AN removed by way of trans lab. I felt I lookes like a science project and was so mad I couldn't go play in Tunica, MS with my live in boyfriend of 8 years. He has been my rock through all of this yet I still yelled and screamed at him like a mad woman. He had taken care of me and all the arrangements since we found my AN (on his birthday) and even though i would not admit it at the time I was in no shape to endure a 7 hr car ride (we live in yukon, oklahoma) for me to go with him. I stayed with my parents and had a nice visit and Joe (my boyfriend) had some much needed R & R from playing nurse maid to me. It sounds to me that your hubby is on a different wave lenghth than I am. I went into my ordeal with the attitude its broke and they can fix it so do it and they have. I still have a ways to travel back to a full recovery but the moe positive I can be the faster it will come. I hope your husband will have the same feelings I have had. I love and appreciate my partner more than ever now. GOOD LUCK!!!!
kkweiher
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Okay, most ANers will probably not like what I'm going to say, but how can the patient really expect the caregiver to "understand" what they are feeling physically and emotionally? Patients need to take responsibility and know the caregiver is NOT a mind reader nor can they "feel" your pain, even though we explain, it is not the same. I do understand the "outbursts" and sympathize with ANers, but you get what you give. If you give anger/frustration, you will receive anger/frustration, this true and simple motto applies to all emotions. Yes, ANers do go through a huge learning curve dealing with what is not the same in our world, but change happens not only to us personally, but all around us, all the time and learning to accept this is the easiest road to walk down, the path of less resistance you know.
My recovery was fraught with moments of frustration. Frustration with what I lost and frustration with my caregiver not remembering what side to be on, finding blame, repeating oneself, headaches, difficulty trying to find the right word or processing words, exhaustion, balance, etc. The one thing I brought into each of these times was humor, also what helped was realising my caregiver is human and has his own frustration so I would quietly tell myself to "button up" and let this one moment go. Was I perfect?....no, was my caregiver perfect?...no, did we have our moments?....yes, do we still have our moments?...yes. I love him.
So come on everyone embrace your new world (caregivers too) and accept this, and one another with wild abandonment! Our lives (caregivers too) could be worse, as we all have read there's always someone else out there worse off than us. Let's focus on that. Please know I say this as life is short, not life can be short, it is short. Please, wake up today and let go of one thing that is making your recovery a hard one. (walking sheepishly off the podium to accept her punishment).
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Being an AN'er, I appreciate Arushi's comments. I know I am always thinking about "Why?" I am responding the way I do. My process was simple and non-invasive...I had CK. Yet, there is still a part of me on edge for what may be ahead as we wait to see what level of success. I do accept the fact that if this had gone undetected my life quality would have deteriorated over time, probably to a point of death. I see life a little differently having gone through the process. I find myself more frustrated with the "stupid" emphasis on certain "stupid" things...getting upset over accidental events or when one person feels there personal opinion/preference is of more validity than another's--when both are neither better or worse than the other.
However, I also have to realize and accept the fact that I am me and others have NOT walked my life path. So, my own perspective is truly only my own and I do not expect my caregiver to fully understand or relate because they have not walked my shoes. Even when I communicate my feelings and fears, there is still no way to fully communicate the pathos of the experience or the influence on life forward.
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Farah, just a question--what meds is your Spouse on?--If he's still on Decadron or prednisone, both steroids, he could be suffering fron "steroid rage" which is what my dear brother suffered from on and off for years--he was an ulcerative colitis patient and that is what they treated him with and it made life hell for his wife. He eventually had a colostemy and is off the steroids and a much happier person.
Topamax is what did it for me--I was a raving maniac for weeks-different meds affect people in different ways--just a thought. Depression is a medical condition that needs to be treated by professionals and chronic pain is almost always accompanied by some form of depression. Medication accompanied by counseling has been the way many of us have dealt with this same problem.
My heart and good thoughts go out to the both of you,
Capt Deb 8)
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Dear Farah
If possible please consider setting up an appointment with a neurologist. A neurologist focuses on the issues and possible causes and tend to be less bias then other doctor's. It's important to check into the possibility of a brain injury or other physical problem that might be contributing to the problem as well as the emotional issues. With outcomes there may be more losses then what a person is willing to share on a public forum. it's not only the physical losses, which is difficult enough, but loss of job,friends, loss of being able to do the things that you dearly loved, loss of who you are as a person, who you knew yourself to be. To who you are now and what you may (or may not ) be able to do.
When there are outcomes, it's really hard to reconcile life now, with life before. It's a clearly defined lline. It's important for you to be able to talk to someone, just as it's important for your husband to talk to someone that he considers to be a "safe person" to talk to. i know the position that you are in. You see a side of your husband that no one else is allowed to see. You're his "safe person". He may feel comfortable enough with you to lash out at a situation that he no longer feels like he's in control of. If there is brain injury sometimes that will magnify the pre existing traits. As an example if a person prior to was angry, negative before , with injury it raises the existing traits to a whole new level, which you clearly see. The problems is he may not see the difference, since "he has always been this way".
Your husband could be pushing you away, rather then run the risk of you walking away. His self esteem may be taking a battering. If I'm not the person i was, if I'm unable to provide for those persons I love the most, if I'm unable to meet them equally as before, then what is my worth as a person, as your husband?
Farah, never forget that at the time you did the best you could with the information that you had. We all beat ourselves up with the could ofs, should of, if only. I am hopeful that the both of you can build bridges. Not to where you were before, but to a place where you both are comfortable in this 'new normal". Never forget your worth as a person. You are caring, loving and strong. Neither of you are" lessor then". You both are showing remarkable courage in a really complex situation. Each of you are trying to find your way with no clear directions.
Know that we care and please feel free to email me off list.
Hugs
Raydean
I am here anytime you want to talk.
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Farah,
You said, "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?"
I am just shy of two years post op. I see alot of myself in your comments about your husband. To be completely honest with you, after my surgery and up until recently, and I mean within the last six months, it has taken me along time to come to terms with what happened to me. I have not been the easiest person to live with in the last two years, nor did I find it easy to be positive, and sometimes I still have a hard time finding a positive side to my AN journey. I am finally realizing that I will never be the same as two years ago. I can only be the best "new" me, that I can be. I still get depressed and angry, but I am finally figuring out why. It is hard to realize that the things you used to do, that came easily to you are not that easy anymore. The frustration level is unbelievable at times, and unfortunately we take it out on the people we love the most. Usually because they love us, and will "take" it from us, and still love us when all is said and done.
I am sure you did all the "right" things when he was diagnosed. I think it's hard, at least for me it was, to realize that people handle things differently, and while some of my family made no effort to even call me while I was in the hospital (the are out of state). I know they were having a difficult time handling it too. I am sure as a spouse you see his frustration, and while I am sure it is difficult for you to deal with, he will come to terms with it in his own time. I know you want to make everything all better for him and his anger is making it difficult for you, but I do believe with counseling and a possible change in current meds (if he is on any) or an antidepressant he will be able to find some peace of mind and learn how to deal with this life changing event.
I was not a negative person prior to my surgery, but in some respects I seem to be now. I try not to be, but some days I just can't help it. And on those days, I just try to remember, there are worse things that could have happened to me. While my physical being has changed due to this AN. I am lucky my brain is functioning and I am able to work and support my family. I don't have vertigo, migraines or some of the other symptoms that are wreaking havoc on others on this site. Like I said, it has taken me almost two years to get this point.
I think the other responses you have gotten are very helpful, the counseling is a great idea. But, remember the counseling is not a magical cure, it isn't going to work overnight, but it does help, and you have to WORK hard to get things back to where they were. I know, I have been to counseling a few times. Also, the medications he may be on may be contributing to his demeanor. I wish you the best in your counseling and marriage.
Just remember it takes TIME to heal physically and mentally from an AN.
Denise
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It's funny Farah, I seem to be moving along on this path in a much more positive way then I was before. It has taken almost 10 months, but I feel I was given this 'change of outer appearance' in order to delve more closely into the 'inner self'.
I'm more at peace with myself now then I ever was 'pre-op'. I don't know if I would have 'found myself' without this surgery/complications. When people ask 'how are you' I answer how my spirit is, which is the most important thing. I hope your husband can find his way.
Take care, Nancy
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Dear All of you Fabulous People,
I hope you do not think I have dissappeared since it has been so long since I last wrote. I'm still here and we're still trying to work things out. I have read all of your messages over and over again and every single person had something of value to say.
At present my husband and I are living together quite amicably but we still have a long way to go. We've been going to couple's therapy which has helped but I think the real turning point was when I realised that I should not be taking his anger at me personally. He is having to deal with the loss of so many things and he doesn't know how else to chanel that sadness so it turns into anger which is projected at me. So now I am learning to be strong and to walk away everytime he gets mad at me for not doing enough and come back when he is calm and ready to talk about things. By doing that I am understanding how much pain he is suffering by having to deal with the fact that he will never be able to do things he loves like riding a motorcycle and DJ-ing. He also used to love going for dinners but now the background noise interferes with any conversations he's trying to have. Can anyone tell me if a hearing aid can help any of these obstacles. We are also going to a local AN meeting this weekend so I shall write more on Monday.
Have a fabulous weekend,
Farah ;)
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Hi Farah,
I'm a psychotherapist in the Atlanta area and I also have a recently diagnosed AN. I plan to go the radiation route at the end of May, but I have definitely been experiencing mood swings and signs of depression as I've been handling all the paperwork, insurance issues, doctors' appointments, etc. on my own. I agree with what everyone has said so far. This is a wonderful group of people, and I'm very thankful to have found them even though I don't post much. I'm glad you're not taking your husband's behavior personally anymore. You can never be perfect enough in life as it is, and when someone goes through a healing crisis like this, it's even harder. You're doing your best and you're keeping your heart open to him, and that's the biggest gift you could give him. You're very brave and courageous, and I'm glad you've found this site to support you as well as your husband.
As a therapist, I recognize your husband's symptoms as those of clinical depression. I think a visit to a neurologist should help as well. If you can get to a psychiatrist so that he can be put on the right antidepressant, both you and he will be very surprised by the difference in his moods and thoughts They really do work. Your therapist should be able to give you the name of someone you and he could see. I also think that he should do some of his own therapy while you're both doing your marriage counseling. Most of his reactions have nothing to do with you, and he needs help keeping everything in perspective. And as others have said, an AN support group would be great for him.
My thoughts and prayers are with you...
Beverly
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Farah,
In 2000 I had FSR. For the next 5 years, I did not feel well. The first year or two after treatment was the worst. I had many of the symptoms that your husband has. What he is looking for, as you may already know, is to feel that he is not fighting alone. My girlfriend at the time did things for me that I had a hard time doing myself such as calling doctors. When you feel dizzy EVERYTHING is hard. She actually called and talked to the nurse at one office and told them how bad I was doing and they prescribed lorazapam for my dizziness, and I swear it saved my life. Really, in a way, SHE saved my life. It's funny but third parties often carry more weight with doctors. It's human nature I suppose, because you are somehow viewed as an impartial observer. She would also handle other little things like paying the bills. Basically any ACTION that demonstrates that you are fighting alongside him will make all the difference. If you don't actively show that you are helping and trying to understand, he will believe his is alone.
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I have had substantial hearing interference for many years...before I found out it was AN related. Question: is hearing impaired in both ears? My right ear is better than my left. So what we do when we go out is to make sure that I am seated on the end of the dining table and have my bad ear out to the rest of the crowd. It actually helps to minimize the interference. Also, by sitting on the end, I miss less of the converations that were occurring around me because I could not hear well on one side. Now all the conversation takes place on my good side.