Post-Treatment > Cognitive/Emotional Issues

Foggy/lightheadedness

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jim j:
Thank you so Much for this Link I never heard of VEDA but they found a Dr in my area that I might be able to get help with.

milhaus:
jim j:

I too have felt like I have had continuous problems with dizziness and lightheadedness. It started around a year before I was diagnosed, and even after translab and physical therapy I still just feel lightheaded and dizzy most of the time. I think I can fully sympathize with what you are going through. I have had multiple other health issues as well that just makes the acoustic neuroma icing on the cake. Mine was also pressing on my brain stem, which meant I was rushed into surgery pretty quickly. I was diagnosed as a 23 year old college student who (before all these health problems began) had everything going. Things have never been the same for me since either. Unfortunately I can't tell you about any therapy you haven't heard of, or any miracle cure that worked for me. I am 27 now, and still struggling everyday to keep my life together. It is so hard to get up everyday, go to work and work hard, stay positive, keep up with all the housework, and interact with people normally when you just feel horrible all the time. I not only have this foggy/dizzy/light headed feeling going on, and like many of us here single sided deafness, but I am also blind in one eye from cancer. I think that might also contribute to my dizziness. I also have mysterious stomach problems and joint pains which I haven't figured out yet. Since my initial diagnosis 4 years ago, I have had 8 surgeries including two translab brain surgeries. One 18 hours long and the other 8. My wife wants children, but my brain tumor has interfered with my fertility by causing low testosterone levels and we are working to correct that.

I wonder every day whether or not I am going to be able to live a somewhat normal life, or are my ailments going to get the best of me? Will I be able to start a family, develop a career, and push through my own misery enough to enjoy life? Can I fake normal? I am trying. One way I try to describe how I feel to people sometimes is that my brain doesn't feel properly connected to my body. What keeps me going is my wife. We started dating in high school at the ages of 14 and 15 and have basically been inseparable every since. She loves me to no end, and I love her just as much. I feel like almost all of my enjoyment in life comes from spending time with her. So I just keep going, because I don't want to let her down. I struggle a lot with guilt, because I feel like I already have let her down.

When we got married at the ages of 18 and 19, I already felt like I had the world on a string and was going to give her everything she ever wanted. My health has been such a problem that I may not even be able to give her the one thing she wants most in the world: children. That hurts. I just keep going every day though, because as long as I am still breathing I will never give up for her. I am working full time, taking full time college classes, and taking fertility drugs as well. I struggle deeply with depression, and sometimes I wonder if I can really keep this up. I am only 27, how am I gonna do this for another 40 or 50 years? It always feels like another health problem or complication is right around the corner.

I can't offer you a miraculous escape to your suffering. What I can do is let you know that there are others out there who are going through similar circumstances and that you don't have to feel alone. I can encourage you. I am not going to give up, and neither are you jim j. I know that I will struggle with these health problems for the rest of my life, and so will you. We both want back what we have lost, but life sadly doesn't work that way. There are many horrors in life, and so much pain and suffering. There is beauty, bliss, and love as well. I don't know what your relationship with your family is like, but my wife is what keeps me going. Seeing her smile and feeling her approval when I come home to her open arms at night after a long day is worth all the pain I can take.

If your family is like most, then they love you very much and want you to be a part of their lives. They know you are suffering, and probably don't know what to do to help. They forgive you for your shortcomings, because they know you are going through something they themselves aren't sure they could endure. My advice to you would be to focus on them. When you focus on yourself all you will find is your own misery, and shortcomings because of your health. Focus on them, and what you can do for them even in your present state. Even if it is just being there, in their lives. If you are anything like me, then leave the guilt behind and forgive yourself too. I don't mean to be overly presumptuous, but I have struggled a lot with feeling bad about the way my life has turned out because of my health issues. Find enough happiness and strength in your family to endure.
 
Half of the game is mental. We have real physical problems that lead us to misery, but I have met many people who have endured horrible life circumstances with a grace and happiness that I can't even comprehend. Your mental state has a huge impact on the way you feel regardless of what physically ails you. I  think our best bet to feel better is to focus on improving our mental state, because the physical one has already had irreparable damage done. 

Best of luck,

Milhaus

jim j:
Milhaus, You are so right concerning everything said. I don't feel sorry for myself nor self pity.  I feel sorry for my 3 children and grandchildren and my loving wife who has been there with me through this 14 yr. ordeal.  I get angry when my daughter and son inlay who have twins a girl and a boy 4 yrs. old.  They always ask for us to go with them and maybe go out to diners.  They know how I feel about going out to diner and the noise. We try to work around the hrs. so less people in the place we go to eat. I do my best to stick it out but when I get to the point I start to zone out I would call it they know the kids. They look at me and try to rush that I feel bad about. I would love to sit talk laugh eat. Holiday time is worse when you get the whole family together of 30-40 people in a house and I have to go into a bedroom and lie down do to the dizziness. I can't eat I get sick to my stomach and I try to sneak out for a while. What hurts the most is I was a strong man physically and mentally I was the glue that held things together. I coached all my kids when they where young. I was the guy that said eliminate the negative excunate the positive. I love life everything about life was good. I sat here in my house today because we had a low come in with a lot of rain and the headache is much worse on these days. I just feel so sad they I am troubling my wife and kids. I am 58 and should still be working, running jobs. I love to work and the comradely I had with all the men just made the days go fast.
I am so sorry to hear about your condition and you are so young I should not be laying this on you my son's age. I will pray for you that you work through it and hope you can get to feeling better. I sorry you had to go through that at such a young age. I do try to stay positive and I hope you keep it positive also. What angoras me it I was not this bad after the craniotomy 12 hrs long. Yes it took 6-12 months to feel somewhat normal but I was told the GK was nothing and no side effects. Yet here I sit worse then before that procedure. I thank you for your reaching out to me and putting things in perspective I really do. I know what you mean by you feel like you already let her down I feel that but you have not. She is your wife and from what you have said it's love through the good and the bad. You are very lucky to have a wife like yours. I wish you the best and Thank You again.Jim

Patti:
I feel so deeply for both of you.  I feel great because of the changes i have made in my life to accommodate my issues (although they are not as severe as either of yours).  But I do stay away from crowds most of the time.  And I have had to retire (2nd time-first I retired from teaching after my first surgery which really messed with my brain)  My memory to learn new things really sucks.  My part-time second career was that of a paralegal.  I did it for 8 years because the lawyer was a friend. I had to dismiss myself from the job because I could see that she could use someone more on the ball.  But i want to tell both of you that i see a psychiatrist a couple of times a year to get prescriptions and a therapist every month.  All of this since my initial surgery 17 years ago.  I have been prescribed lexapro from the start because of my depression.  I have also had a sleep problem since then and I take ambien (17 years and still effective) and am taking 1 mg of clonazepam at night to deel with anxiety that affects my sleep.  The medicines make my life great and allow me to function properly during the day.  At first i felt guiity over needing these drugs, but if I were diabetic should i feel guilty over needing insulin? 

Crazycat:
Hi Patti,

  My surgery was 17 years ago as well. I'm starting to get some regrowth now (2mm over the past 10 years or so). How did they treat your regrowth? It's looking like regular stereotactic radiation for me, but sometime over the next year or two. I am also afflicted with what's called "overshunting", or, too little CSF in my head. Too little can be as dangerous as too much, and there's not much that can be done for it.

My initial tumor was about the size of an egg, so I was told by my neurotologist. The discussion went something like this:

Me - So, it was 5cm x 5cm, the size of a golfball, huh?
Dr - Oh no, somewhere in between a golfball and a hardball (baseball). We (he and the brain surgeon) still talk about it to this day!

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