Being Brushed Off....?

[Ned]

That has been said to me as well, although it may not be life threatening, it is life altering.

[chloes mema]

That has been said to me as well, although it may not be life threatening, it is life altering.

So true; it is life altering!  I'll have to remember that. (not that I can forget but remember in the sense of telling others)

Karen

[patbiedermann]

I think I know how you feel.  Friends all said they would stop by during my recovery and no one did...just visits and calls from family.  Now that I am 7 months out and back to work, everyone thinks everything is back to normal again.  People at work expect me to do the things I did prior to going out for surgery and at home they think I can do everything like before.  It is a struggle to complete some things and I tire very easily.  I really think they treat you this way because they don't know how to deal with what you have gone or are going through.  It really makes it hard because they DON'T KNOW and don't understand and most times there is no one you can talk with.  I find myself a lot more sensitive than I was before.  I don 't want to burden my family and friends.  that's why there is this site.  Thank heavens.  This is the one place you can let it all go.

[Ned]

My balance problems have been really bad the last 2 weeks, can't drive, walk with a cane and concentrating on not falling.  Apparently I also have some memory loss, called a couple of clients this morning and they said I had talked with them Friday about what i was calling about.  Had someone put a prayer request in for me at church that said I was having ear problems.  For the first time in years I am so depressed.  I can't imagine living like this the rest of my life.  My family doesn't really get it, no one gets it.

[alabamajane]

Ned, WE get it! Believe me! We are here to listen and try to help you through this.. it is hard for many of us on a daily basis too..
It sounds like you could use someone trained to listen and give some advice.. I know family is not always the right ones to do that ,, sometimes they care too much and can not find the right way to help,, if that makes any sense.. you do not say if you are still under Dr care for your tumor,, maybe you need to visit with him/her....find someone to listen to your symptoms and dispair..
We are here to try to help you in any way we can,, talking on here sometimes helps see that there are indeed others dealing with same feelings and responses you are. Good luck , Ned, here's hoping  your symptoms improve and you won't be dealing with it like this "for the rest of your life",,  We do care though..... Jane

[Jim Scott]

Ned ~

I was distressed to read your post and learn that you're experiencing these problems and, not surprisingly, feeling frustrated and depressed.  Who wouldn't?

I agree with (Alabama) Jane that you should contact your doctor and let him/her know about the onset of these life-altering symptoms.  Obviously, as much as want to help, we're not doctors and cannot diagnose.  However, sometimes residual swelling can have this effect - and it can be controlled or alleviated with a steroid prescription.  Of course, that is mere speculation because I have no way of knowing what is causing your balance problems.  Please contact your doctor - and know that there are a lot of folks on this website who really do understand what you're going through, how terribly frustrating it is and how it has the effect of making you feel isolated.  Please update us when you can because we want to know how you're doing.  Thanks.

Jim

[Cindyswart]

Well I guess it just depends on where you are in the journey. My husband, after a disagreement with the company who provides us our life insurance, decided move our polices to another company. Well that requires a physical and lots of questions, like "have you been hospitalized in the past 5 years and for what"? So now we are working to down play the situation by not using the words "brain surgery" and "tumor". Isn't it ironic how your perspective changes!!! As for me, 6 months post op and I am fabulous!! Not even a single headache! No dizziness, and very few balance issues. My surgery site is waking up a little more every day, and if i don't share, no one even know that I had surgery. I owe this to a brilliant surgeon, a gifted neurologist and and awesome omnipotent God!! I am truly blessed!!

[Ned]

I appreciate talking to people that understand. Here's where I am.  After radiation, my follow up docs were the radiation oncologists.  However, after about 6 months they told me I need to find a good ENT to monitor things.  I found one and he basically would monitor my MRI and when I would have balance problems he would suggest I consider the Gentamycin shots.  I didn't like the idea of losing what little hearing I had in my AN ear.  The balance problems would dissipate in a few days and things would get back to somewhat normal. I saw the ENT guy last Thursday and suggested new balance and hearing tests to determine how much function remained.  He said if the balance nerve was almost gone no need for the injection it would die soon.  He said don't worry about the balance problem, it will go away as always.  If not, then that is just what you have to live with.  Crap, this stuff has been going on for over 2 weeks.  I went to vote today and dropped my cane at the desk and bent over to get it and fell on my freaking head. The balance was off the chart.  I am in sales and HAVE to work.  I am self employed and if I don't work, we are done.  I can't hardly work, I don't want to be in strange environments, I am only comfortable at home. What type of doctor to others use for follow up?  Just looking up from my keyboars to the monitor makes me dizzy.

[Cindyswart]

Ned

I had retro surgery, so I am unfamiliar with the side effects of radiation. However, I am in sales!! I worked from home for about two months after the surgery so that I could rest during the day. there are some of my customer that did not even know that I had missed any time at all. That is the beauty of our job- we sell where ever we are!! As for the balance issue, my balance nerve was slowly destroyed by a very aggressive tumor so by the time I had surgery, it was a goner. I am a classically trained ballerina so that is a BIG issue for me. I still at times walk a little like a drunk, but I find that the more I heal, the better it gets. And I am not a patient person!! Time is really your best friend. You will find that you may need to do some things differently, but you can still do them!!It took me 18 months to be diagnosed and another 6 months for surgery, I am just happy that I am on the "other side" now!!