ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: KellyD on February 27, 2008, 07:46:38 am
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I am looking for anyone that can give me help and advice. My husband had an acoustic neuroma removed two weeks ago. He developed some complications with his heart rate and was in the hospital for ten days. We are home now, thank goodness. Physically he looks great. He still has head "fogginess", facial weakness and tinnitus. The largest problem I see is that his personality is different. He mood/affect is flat and pretty emotionless. Has anyone ever seen this? If so, was it temporary? I am scared beyond belief that I will not have my husband back.
Thanks for any help you can give me.
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Its been only 2 weeks!! ... I did not feel myself for at least a few months.... also I would assume he is still on Meds... !! :o
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Kelly,
Your husband has had major surgery and when it comes to the brain, a lot of people are affected differently by that fact alone. Give him time, love and support. He'll be better than ever once he realizes he survived and is thankful. For some of us, it takes longer than for others. At two weeks, he is about on target to still be in a fog. We are all here for you. I'll keep you both in my thoughts and prayers.
Brenda
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I might add that I was still on a walker at 2 weeks !!!! I was in sad shape.. but today I'm kayaking every chance I get.. but does not come back over night.. its a long process
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Oh my! It took me two months before my head felt anywhere near "normal". Give your hubby LOTS of time....medication alone does strange things to ones head....
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Kelly, You and your husband have been through a big trauma. Your husband might be looking at a calm after the storm. Think of healing in terms of weeks and months. You will both see a different picture after two months post op. Reading threads here on the post op folder might give you more insights. Each of us heals in a similar sequence but at a different pace.
God Bless you!
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Hi, Kelly. Welcome to the forum.
I'm sorry you have to deal with this but frankly, AN post-operative fatigue and listlessness is not uncommon. Some AN patients go through it quickly and some take longer. I was quite fatigued and listless for about 3 days post-op. By two weeks, I was driving again. However, I was even more impatient than usual for quite some time after my surgery (about six months) to the point where my very supportive wife of 37 years asked the doctor (privately) if the surgery could alter my personality. He said it was possible. Not due to the actual tumor removal but due to the shock to my psyche from the reality of having this major medical crisis (I had hardly ever been ill up until then) and the fact that my formally excellent hearing was now compromised and wasn't going to improve as well as my forced realization that I was mortal and physically vulnerable, something I only thought of in the abstract, up until my AN diagnosis.
As prior posters have advised, give your man time to heal and adjust. Help him, but don't be over-solicitous, as my wife was, which made me feel like an invalid. Men don't like feeling physically vulnerable and/or an object of pity. After major surgery and heart complications, your husband probably feels like he's been diminished in some respects. Encourage him to get out and move around and, in time, to do the things he used to do. Ask him for help if you need it, even if it's only to reach something you can't. He needs to feel useful again, not like a sickly burden you have to take care of. I know. I felt that way for awhile and I highly resented it. No one's fault...certainly not my loving wife's doing, but I needed to feel competent and effective and until I did, I was crabby and detached. Your husband may be experiencing the same feelings, so give him time and don't 'smother' him. Let him be the man he is, not a frail 'patient' who needs constant supervision. I trust he'll be fine in due time.
Jim
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Thank all of you for your comments thus far. It is helpful- especially since I can not sleep at night thinking that not only will I never have my husband back, but how will we manage with our kids, work and all of that.
I have no problem with the fact that his head hurts, or that he has the facial weakness, or that he has no hearing in that ear (They called it a "dead ear" at the ENT today). Likewise, as much as he can do we are letting him do- go out to lunch, eat dinner with the kids,etc.
I guess my biggest concern and fear is that I see personality changes- inability to make a decision, lack of any emotion, lack of expression- not facially because I know that is to be expected, but emotionally. As if it is all gone. I really do not recogize the person who has been my best friend for 19 years and it is real lscary to me. I have been reading about whether the surgery could have caused some type if damage to his frontal lobe. If you all tell me that this is probably a temporary thing, then I feel much better. I have been unable to find any literature on it and that is why I joined the group.
Thanks again to all of you.
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Hi Kelly
Don't be concerned. Somewhere in all the pre-op literature I received, I read something about a post-op depression. It sounds like a normal thing. I'm three months from my surgery and I'm still dazed and confused. I do get out and run a little, but I feel a bit bobble-headed. And I do feel a bit anti-social -- especially in conversations or talking on the phone. Am I myself yet? No way near. But I see small steady improvements. And I know it must be hard for people to adjust to the hearing loss. Mine was nearly gone before the surgery so there really wasn't an adjustment. I guess the best thing you can do for both of you is be patient. I'm finding that has been the toughest thing for me. But based on what I've heard from others, everything does return to normal eventually.
Best Wishes
David
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This is all very good advice. I agree that at 2 weeks it is very early and should be expected. My husband and I both had surgery in the last 6 months (not brain surgery) and we both were amazed at the post op recovery period being harder than we anticipated. It is very hard to go through the type of surgery he had and as our primary care Dr said there is always a component of depression that goes with chronic health problems. So I would give it more time and if you think he needs a little help getting through this talk to him honestly and get the help both of you need. Their are counselors that specialize in chronic illnesses and dealing with post op issues.
If you are needing someone to talk to one on one please feel free to PM me. I am here to help you with this if you need it. Kisses to your forehead. :-* 16
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Kelly~
Hi! I ask my sweet hubby about this and he said that patience and prayer is the best thing he would advise. We had been married just over a year when they found my tumor & operated right away. Tough stuff for anyone, but especially someone who was pretty much stilll a newlywed!! :o) I know that it was very hard on him.
I had a stroke on the operating table and a few others here have mentioned some of the same things that I went thru after the surgery that I always attributed to the stroke -- either way, I know that a lady (not old) at our church had a stroke a couple of years ago and she was VERY "flat" (tone especially) for a good while, but it is getting better. I don't think that mine even lasted that long. You know, I just remembered about how I had been back at my in-laws for a few days (so it was around 2 weeks) and a Weight Watchers commercial came on TV and I started laughing. My hubby, mom & MIL all started laughing, but they really didn't know what I was laughing at -- later they told me that they were just so relieved that I was laughing b/c I hadn't smiled/laughed since the surgery and they were afraid that I never would again. OH, & the reason I was laughing was b/c I had been overweight before my surgery but pretty much lost 50 pounds overnight. I told Dave (in a slurred voice, of course), "Boy, have I got a secret weight loss program for them!!!"
I am sure that it is so hard, but try to be patient!!
K
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I am new to the ANA forum -- but have often read on it for some insight into what we went through! I wish I had found this before my husband's surgery. He had an AN (approx 5cm) removed two years ago. Little did we know the life altering changes it would bring! I too feel he underwent a major personality change. It is like he has no emotions, etc. There were many things that happened -- he was in the hospital for two weeks, than in a rehabilitation facility for two weeks. When I brought him home he still could hardly walk. I never dreamt it was going to be like that. He is now back to work, but is EXHAUSTED when he comes home.
People will ask how he is -- good as can be expected. But I have had to adjust to this new person. It is not easy for anyone. I wish there was a place for spouses to talk.
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Sherry I do not know about the spouse issues, however my son has gone through the same sort of changes. The no emotions thing is what they call flat affect and he does indeed suffer from this. Your husbands tumor was very large and it is a known fact that after brain surgery and possible traumatic brain injury that the exhaustion is always a very real component. It is so hard having to be a care taker of a family member. This I know all to well. I to did not find this site until after surgery and only had minimal time to read posts while helping my son through all of his recovery. My son is now almost 3 years post op and still making improvements. We have had to help him to express himself in the right ways and make him aware that with his flat affect his peers would sometimes be offended by the way he responded. We were unaware of this and learned the hard way as he lost many friends.
I am always willing to talk to you. You can send a PM to me anytime. I feel your pain and hope that I can help you with this. If you send a PM let me know where you live and I can help you find resources in you area for a support group. There are many to choose from for care providers, brain tumor survivors and sometime stroke groups that can help due to the same sort of issues you are dealing with. Hang in there and we can help you along. Kisses to your forehead. :-* 16
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Sherry~
I have always felt that my sweet hubby had a LOT of adjusting to do after my surgery. I was prettty young and we had only been married about a year -- I've always said that he didn't end up with the girl he married. We have a wonderful life, but it is very different thatn how it started! A lady at church had a stroke and I suggested that he take her hubby out to dinner b/c I thought that maybe he could feel free to "vent" to someone who had been there with a spouse in the same situation. I know it has to be hard.
I still get VERY tired at night, but it is not usually the exhaustion that I felt the 1st few years out. Now it more like once or twice a week instead of every night. I also pretty much HAVE to nap at lease once on the weekend if I want the week to go smoother. I am 12 years out now -- I would say it took a good 3-5 years to get where I am now! I know I am not a spouse but I am a good listener if you ever want to "talk" please PM me and I can give you my number. Also if you would like, you can check out my blog & see what it like 12 years out(for me). It is www.threecurlygirlies.blogspot.com (you have to start at the end if you want to read from the beginning).
Good Luck!
K
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The whole "time-frame" to this (for me) just beggars belief
- I recall I lost the touch sensation in my mouth,
yet gradually over 12mths it came back
The full fitness thing took a year too
- that involved many tears
I guess we all see the TV Hospital shows
- and the movies, where despite
multiple wounds - the hero bounces back a week later
to capture "goldfinger" or similar
In real life its not quite like that
Once you get up to the 3-4-5 cm range
to walk away a month later is doing very well indeed
Its a rebuilding process - which is ongoing
Can I wish you all well with it
Best Regards
Tony
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Tony:
Good observation. Thank you for your insight into this complicated issue.
I guess this is why my neurosurgeon is always grinning and vigoriously shakes my hand when my semi-annual MRI/checkup is over. I recovered quickly and well from a large AN, surgery and radiation - with very few complications. However, I still have a few 'reminders' of the experience, which I can bare with equanimity, knowing the struggles other AN patients go through and the physical and emotional burdens many have to carry - sometimes for years. This knowledge (of 'what might have been') also aids in improving my disposition somewhat. :)
Jim
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Sherry and everyone:
We are now three weeks post an removal. the difference from week two to week three has been tremendous. I am seeing lots of my old husband, although there are still shades of someone I do not know. The flat affect has dissipated somewhat. He is starting to joke and smile and even show some emotion towards our kids and me. What is still off-he is still child-like in wanting me around always; he can be aggressive; and he does not like if I question him!!!
So, things are getting better although I know we have a long way to go.
Sherry- I am also willing to talk as I have some very conflicting feelings about what I am dealing with and how to handle different situations. Do I yell and scold like a little kid or do I grin and bear it? Don't know- but I have to tell you that I have done both and neither is fun.
Jim- I also know from reading this forum that things could be a lot worse and to be thankful and appreciative for what we have right now.
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Hi Kelly.
I'm glad some of your "old" husband is starting to come through. He's in there - you just have to be patient. This surgery affects the whole family and i will be the first to admit - i was not the most pleasant person to be around for a while after mine. There are a lot of things that he needs to adjust to and he may be scared that he won't adjust or be the person he used to be.
As far as the child-like behavior - no offense to the guys here - but, remember - he's a man. They do tend to turn into children when sick or hurt - I know they're not ALL like that, but as a nurse, i can say I have seen my share! My husband is one of them. He had the flu last week (because he didn't get his flu shot that I've been bugging him to get since September...) and I told him he whined and carried on more about the flu than I did after brain surgery!
I can say that I think I've turned out a better person because of my surgery. Not as many OCD-like tendencies, more patient and tolerant. It just makes you realize what's important in life and it took me having surgery to realize it wasn't the dust on the coffee table that matters. So, who knows, maybe you'll end up with a new and improved version of your husband!
So, my advice would be to grin and bear it, as hard as that may be. Take some time for yourself away from the situation if you can, otherwise you are probably more likely to yell at him. You'll make a better caretaker if you take of yourself too. If things don't start looking up, I'd mention it to his doctor and maybe he can give him a mild antidepressant to get him through this. I know that's what I wound up doing and it really helped to keep me from snapping at everyone and from making mountains out of molehills.
Hang in there and hopefully someday you'll both be able to look back on this and laugh - or at least use it as leverage to get some nice gifts. It's the least you deserve after putting up with him, right? :D
Lori
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Lori has very good advice as I to think you should grin and bear it. You can not take back something you say once you say it. You do need to get away even if just for a short time to recharge your batteries. Just try to remember that he is most likely feeling afraid for whatever reason and that is why he wants you around always. When he becomes aggressive just gently get him focused on something else and at a later time talk to him in an honest no condescending way and let him know how that makes you feel. This will get better with time and a lot of patience on your part. Try not to scold him or yell as that will only make things worse. If you need to talk to someone who has been through it please do PM me and we can exchange phone numbers. I do know exactly what you are feeling and we had a great neuro-psychologist to help direct us. Kisses to your forehead. :-* 16
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I am 7 1/2 months post-op and I am more grumpy than I was before. I think it's because of the headaches I'm not supposed to have and the nerve shooting up my neck. I had to quit my job and take a nanny position for my sister. Less stress, but not helping with my symptoms. The tinnitus is horrible, but comes and goes. I have the same heartbeat in my head mostly in the AM. But dealing with it. I take Neurontin and lots of ibuprofen. It seems like it's getting better, but I may be getting used to my "NEW NORMAL". To get to the point, I was pretty lethargic and depressed for a few months before I got back to half of my old self! Keep your head up and give lots of love and support.
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Kelly,
Glad to hear of the progress!,
I am almost...1 yr post op, transphenoidal endoscopic approach..a less invasive form of brain surgery.....however, that being said, I physically recovered in a few weeks...but there are times when my brain is still fogged, and I do not feel like my normal self....it aggrivates me that my husband is sort of like...well, yeah you had brain surgery but it was endoscopic,,and you are fine..can't use that as an excuse.....
but let me tell ya.....it takes a while..for the most part I am extremely lucky, and feel overall that I have had very minimal effects in general,,but I was actually so pleased with myself that just the other day, I actually remembered a phone number, without referring to it at least ten times!
My husband used to call me the human rolodex, so this should give you a clue to the length of time that fulllll recovery can take.
for the most part, no one would know that certain aspects of my personality have changed....likes dislikes etc. but some things have indeed changed. Not better , not worse,,just different so do not be suprised if he always like say icecream, and now he doesn't.
Really overall, it beats the alternative and now I get to experience things I had no interest in before....
As far as fatigue etc....it will pass and he sounds as if he is doing great!
Hang tough and he will be fine! look forward to new interest etc!
Ceeceek