Struggling With Pre- and Post-surgery Personalities

i understand completely. im 17 years old and i had a pilocytic astrocytoma when i was only 4 years old. its the constant worry of people judging you or people treating you differently because of brain damage. i have many physical problems, such as constant virago, dizziness, trouble balancing, and i also have many vision problems because the tumor pushed my eye down because of the pressure. i almost had to "train" myself to be able to walk down hills or jump or even walk or run. it even used to be a problem with stepping down from stairs. after the surgery, i had MRI's every 3 months. since it hasn't grown back, it went to every 6 months, then to once a year, and 13 years since the surgery, its every 2 years of check ups. i know you can over come anything. its difficult and its a worry, with a worry it might come back with a sign of a migraine. but it will all be okay in the end, i promise. with the help of family support (and even support from outsiders!) you can overcome a brain tumor. its so difficult, i know. it took me years to build up my physical ability and i still can't do things other people can do...but i know with good spirits, recovery will go swell and any problems will get easier. it really will. i promise. i hope your journey will end with hope and success and that you will be able to live life to the fullest.

I am so glad I found this group. I am looking for support. I had a meningitis removed four years ago. A year later my husband of 26 years left me. After some prodding from a doctor I applied for Social Security Disability. I was approved but spent most of my life raising our children and therefore only make $774. per month.



I had already decided to go to college. My kids were all just about out of school and my ex husband did not work steady and other than about 13 years of our marriage I never knew whether he was going to go to work or say I am going to quit this job or come home early because he quit. He told people that as soon as I got my degree that meant he could "piddle" (his word) around his shop and make items to sell to a green house. He probably made around $1500. each year doing that. So I believe partially he decided that I would not be able to support him so he needed to move on??



Wow, most of these stories I could have written. I look perfectly fine, people think what could possibly be wrong with her? I was supposed to graduate this December but am failing math and so I have to take it again next semester. I am living off of my disability, $200 in alimony but that runs out when my student loan money run out. I have hit my max on student loans as I have had to take a full credit load in order to get the insurance yet I also have taken one or two difficult classes and a couple that appeared to be much easier on me.



I now have seizure disorder, my memory is for the most part gone, I have trouble coming up with words, I virtually can't deal with numbers. I have to have a payee per SSD to help me. My mom is now helping me and it is making a huge difference. I cry every single day and that started before I got to my private recovery room. I have clinical depression and well as I can't think of the shorter depression, from my divorce, or something going wrong for my kids.



My G.P.A. in college, I attend Boise State University, was 3.9, I was on the Dean's List with Highest Honors. Now I struggle to keep about a 3.0, with the failing of this math class I am sure I will fall below. For the most part instructors are understanding with my disabilities and ongoing health problems but this semester my math teacher was awful. He "wormed" his way around my accommodations and humiliated in class if I said anything that was wrong. Other students noticed. I left one day crying so hard I was headed to buy a gun and throw the towel in. But then I think of my mom and my three boys and as much pain as I am in I stop myself. Speaking of pain, where the doctor sawed my head open, it is sinking it and I live with more pain now that I did before. Does anyone who had a crainiotomy have their scar sinking in?



I somehow keep up in school because of the accommodations that I get from the Disability Resource Center. I also work with Vocational Rehabilitation. I am in a financial position that I really need to graduate. My fear of course is...will I be able to keep a job. I can't even keep track of my checkbook. I also have a good friend who comes to my home periodically to help me with paperwork. Things I have to fill out, EOB's from my insurance, those kinds of things. It seems to me, why can't I do this by myself. Because as soon as Pat tells me that put for example an EOB in the file I do it. I can't match up the bills with those though. I just pray that I can get hired by an agency that works with disabled people and that I can get an understanding boss.



As mentioned in earlier posts I feel isolated. My mom is the ONLY person that understands me and lets me call and cry and vent. My boys think I should be over it and that I am not happy enough. My dad also does not understand depression and thinks I should be "jumping for joy" to be rid of my ex husband. I do not feel that way. My best friend for 24 years abandoned my shortly after my ex husband left. She never told me why, which he did not either so I have two unresolved main relationships lost in my life. I knew a woman a little and her husband did the same as mine so we became friends and really bonded. She has small children, grade school age, she is in her mid 40's, waited to have children. She is also is a completely differently socio-economic situation than I am in. She has so much more ability to pay professionals to recover and she is very strong and got to the point that she mostly did not talk about the divorce. She told my youngest son, he is 23 and used to teach her kids Tae Kwon Do, so they are close that she is just to busy to have me in her life. That was a stab in my heart because I have gone OUT of my way to be positive. Last thing about her, she makes $7500. per month for the rest of her life even if she gets remarried. I think that has a lot to do because she can do so much with her other friends that she can't invite me to do.



My other friend started a single group in our church and we have become very close. However, she yelled at me last week because she does not believe that I can't just snap out of the depression from the brain tumor. She was yelling at me. I said nothing back, just got our of her car and went in my house. She slowly started to call, text, and come around again. I am very forgiving so I just went with it. Plus I need friends and I have one in her. She started to tell me again that I was depressed because I did not put enough faith in God and I hushed her. I told her we were not going to talk about it, we were just going to agree to disagree.



I have said a lot about many topics that affect my life after my brain surgery and I sure hope that I get some responses. I am really looking for support. I realized last week when I started looking for support groups that I am not the only one on the Earth who has had this happen. And to connect with others, hear anything that has worked for you, things you do for yourself. I am really hoping to hear from several of you with some ideas.



Thank you,

Brenda

Wow, I am not alone!!! I am so glad We (me and my Secret Selves ana my Alters.



I have one friend that told me I am trying to find my New Normal, how and when I will do that will take time. I just wish my husband and those around me could understand.



Thanks for sharing yourself and struggles. It has helped.



Just like me, you are not alone as well.



Juner

Hi, th elast post was a while back so I am hoping you are still monitoring this story; I can relate to all you have to share, my tumour was removed three years ago and I still have post-op problems; depression; feelings of the sort you discribe.



My tumour was diagnosed after a siezure so I lost my driving licence for 18 months. Without surgery I was given three weeks to live so we are doing OK at the moment. There have been many times when I have thought long and hard about ending all of this but each time there has been a bigger and better reason to stay.



Friends, Family and employers do not see or understand the mental trauma or physical efforts required to function from day to day post this kind of operation. All that you say is true, I have come to terms with what will happen but make the concious descision that it will NOT be today.



Dig deep and play the game; I am fortunate that I live in the UK but I stop short of telling my neuro/GP what I am really thinking because it has a big impact on how I am allowed to function on a day-to-day basis. I find that if I let my employer know how I feel and how thing affect me then I can cope with most things, I am completely done in by 14:30 and this is three years after my op.



I did have to change jobs though as my former employer thought I was using this as an excuse not to work.



Hope things are getting better and you have managed to move on some, if you wish to talk then I am happy to listen. Stay well and God Bless



M

You can stand up for yourself. Do you go to a therapist? If you go to a therapist you can practice standing up. Sometimes people should be put in their spots, even your loved ones. I am finding this. I don't mean anything harsh. I just mean, if you have a disability it doesn't mean that you are helpless. People can succeed. Go for it. If they give you remarks such as you cannot do this, give them remarks and ask them why etc. Because maybe you can.

I'm a 27 yr old male that had nearly an emergency removal of a meningioma from the left side of my parietal lobe last friday. In this week i've basically had to hand control of my life over to my family. I'm capable of taking care of my own creature comforts...that's about it. I know how you feel. Who knows how long before i have my independence back?

Your entry helped me to know that I truly am not alone. I had brain surgery for an aneurysm one month ago, and my personal battles are overwhelming. I hope your okay for now. Thank you again.

I can certainly empathize with you to a much smaller degree. I myself had brain surgery but I was 'lucky' and it was for cavernous angiomas (bleeding in the brain) and not a tumor as they initially thought so I only had to go through it once.



I do struggle with some of the post-surgery complications that you mentioned and I can definately identify with how the people around you interpret how they think you should have just 'bounced back' from the surgery and should have gone back to being 100 percent. They do not understand that you will never be 100 percent again and that there are a LOT of things that you have to adjust in your life (most of which are so minute that they are hardly noticeable to anyone but yourself). They were supportive and helpful during the initial surgery period but they don't seem to realize that you still need all of that support. It may not be obvious but it is still needed.

Boy, I wish my husband would read this. Maybe he would FINALLY get what I have been telling him for the past 4 years.

Good luck sir and PLEASE work through the depression. I am sure your loved ones do not want to live their lives without you no matter how much more 'convenient' you think it would make their lives.

Live your life day by day (and second by second when you have to) and just keep fighting!!!

XOXO P

It would be horrible...I can only imagine....My heart goes out to anyone who would have to deal with such issues.