Hi Sherry
I'm not a Doctor or anything. I was the wife of someone that also had a large AN with similar outcomes. First of all do contact your husband's doctor and share with him or her your observations and concerns.This can often be done by phone. Right now the Doctor only has part of the picture, your input would help to give him/her a clearer picture and could lead to referrals to Doctors that may be able to help. With large tumors it is possible to have multiple residual neurological deficits and symptoms as a result of complications of acoustic neuroma with or without hydrocephalus. These may include complaints of neurocognitive impairments, changes in personality. mood disorder, tumor side extremity paresis. tumor side limb ataxia, tumor side sensory impairment and ataxic gait along with the dysfunction of the cranial nerves ranging from 5th, 7th, 8th, 9th 10th and 12th
Sherry, for me it was like the man i married and knew for 25 years died, this "new person" I still deeply loved, but the person I had married was gone. The physical body remained, but the specialness that made Chet, Chet was gone. It was made worse because i felt like no one understood. I was constantly told 'how lucky I was' and how "it could of been alot worse". I knew both of these statements were true, but i wanted my husband back. Sherry, as much as we both had to be grateful for, there were also losses and those loses must be acknowledge and grieved for. I wasted alot of time trying to get back to where we were before the surgery, that i fail to see the possibilities. It took me awhile to realize that, that life was gone. All of those feelings that you are having, from the joy of his still being here, to the anger, frustration, the hurt from mood/personality disorder, every one of your feelings are Ok. You have a right to feel the way you do.
What I know to be true (and why you need to talk to his doctor) you are his safe person. It is you who he feels the safest with, which also means it is you who sees the person that no one else sees. It is you he'll trust enough to see the full range of emotions, you will see him at his worst. If there is personality/mood disorder it can be extremely confusing (and hurtful) since things can be normal one minute and angry the next. Adds whole new meaning to "turning on a dime" The truth is with so many outcomes it's very possible that a emotional dependency developes adding to the caregivers plate.
All of us have positive and negative traits. With brain injury some of these traits are reved up a few notches. As an example, if a person tended to be alittle on the selfish side, or maybe argumentive prior to surgery, say 3 on a scale of 10, thru the years we just probably said or thought "get over it", but with brain injury the same traits may be now at a 7 out of 10, very noticeable to you, but because he has always been this way, he is unable to see how he is now.
It is part of the brain injury, no matter what the cause.
Balance does improve, it's something that has to worked at, but does get better. This does not mean that the ataxic gait and or tumor side upper and lower extremity paresis. tumor side limb ataxia will improve. Again I'm not a doctor. But I can share what Sherry is describing is probably
alot like Chet was. If either Chet or Sherry's husband passed you on the street, no one would think brain tumor, most everyone would ask " when did he have the stroke". With the facial paralysis and tumor side limb impairment, this is what the world sees, a person that has had a stroke.
Sherry, i never did have all of the answers, tho i tried hard to get them, I did reach a point that the answers no longer mattered, know that the doctors won't have all of the answers. Start with evaluations. A good neurologist can help sort thru the impairments and help find the cause. They can outline the impairments. Testing such as an EMG (gee it's been awhile, hope those are the right intials) can help you determine where your husbands facial paralysis is at and help you chart a course of possible treatment in the future. a neuropsychological evaluation will help to better quantify neurocognitive impairments. An eye specialist to help keep watch on possible problems resulting from the facial paralsis. No one doctor will have all of the answers, but each doctor that you see will give you part of the answers. Kinda like a puzzle, you may not have all of the pieces, but you'll have enough pieces to be able to see the picture. Once you have the picture then plotting out the way will be easier.
Sherry, having walked in your shoes I have got give you a hug, and to tell you that i am so proud of you. I know that this isn't easy and that there are easy outs that could be taken, but you stayed. Next time Rascal Flatts "Everyday" song comes on , listen to the words. That's you he's singing about.
Geez, I know that this won't make sense and i do apologize, but it'll make sense to Sherry, or at least I hope it does. Sherry, please email thru this site anytime.
Hugs and prayers
Raydean
