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Comment by Jamie Lopez-Idi on November 15, 2010 at 10:27pm

It is so nice to see a page like this.. Hello all if we have never spoken before. I too suffer with the Highs and lows, I am now 3 months post my Gamma Knife surgery for my 2nd tumor, a 3.5cm Trigeminal Neuroma, and next week going in for my first post op visit. Not looking forward to it.I Have been suffering from some pretty bad vertigo and extremely tired at times. I have a 2 yr old son which makes things a little rough on those days, but thankfully I see other people going through similar things and it makes me feel not so completely alone! I am definitely going to speak with Dr. Constantino about the chemical imbalance thing. I am giving everything time and trying to keep positive, but it's definitely not easy trying to stay calm, especially when I am having a severe headache. I tend to have a full panic attack which I hate..Mostly at night. Does anyone else suffer from these? Hoping to have a better understanding soon to some of my many issues!! thanks all

Comment by Beth Rosenthal on November 15, 2010 at 8:59pm

A chemical imbalance makes sense. It sounds like a modern diagnosis and not all docs would be comfortable with that diagnosis. A brain surgeon wouldn't be able to diagnose that. A psychologist/therapist could diagnose it.
Dealing with brain surgery, physical loss, medical & household bills would make anyone depressed.
However, I'm saddest over not being financially independent as I expected to be by my age and that I haven't had enough emotional support. What are you most depressed about?

Comment by Bonnie on November 15, 2010 at 8:23pm

That's interesting about having a chemical imbalance in your brain following surgery. No one said anything about that. I'll have to remember to ask my neuro about that.

I have been attributing my anxiety and down times to the scarring on my brain which interupts brain activity (electrical activity). I also have a seizure disorder due to the scarring/brain injury. The (generic) keppra I take may also affect this.

I been using lifestyle changes to deal with it.

Comment by Peggy Card on November 8, 2010 at 3:14pm

For those of you with more recent (in the last year or two?) surgeries and treatment the depression and anxiety is to be expected. Several months after my first surgery I was at my lowest point. I was really struggling with why did I survive all this to be so physically and emotionally hurting. I have this amazing cardiologist and was at a follow up appointment with her and I asked her how I could be like this. I should be happy, right? She looked at me and said, didn't they tell you that after brain surgery and treatment you will most certainly have a chemical brain imbalance? Of course you are depressed! You cannot mess with the brain without causing an imbalance! So, some of it is physical. And sometimes the only way to fixed that is with another medication. Oh well, if it works, I'll take one more pill.
Beth, you named it very well, we are always going to have down days. You can have a wonderful spouse, fantastic kids, rewarding job, blah, blah, blah, but you also have had a headache for three days in a row or you are exhausted from sleeping poorly or despite your attempt at an optimistic attitude you are having your six month MRI and you just have a gut feeling something is wrong....its okay to be depressed. Its okay to be anxious. Tomorrow is a new day and hopefully you won't have a headache, or your MRI shows nothing new! One Day At A Time.

Comment by Beth Rosenthal on October 28, 2010 at 10:55pm

I feel for you Becky. It's really difficult to stay optimistic. Really, we've already had a bad deal early in our life. Not that this is a fix, wear a patch while reading. I had a crossed eye for two months post surgery and I wore a patch to strengthen my eye. It's not the same, but it might help you study.
I started a tab called Down Days and it's to help us perk up. When you have something to offer, add it.
I'm glad that the site is helping Debbie. I keep adding whatever I wish was around for me and I look to see what members deal with. This site has transformed me and it's made my life so much better. But I still am so isolated and lonely. So I hope that I'll build friendships from here. We'll see. Support this site by buying a shirt or making a donation.

Comment by Becky on October 28, 2010 at 8:57pm

I am having the hardest time staying positive. After having the seizure a few weeks ago, my MRI got moved up about a month and I'm getting it on Monday, then seeing the neuro-oncologist on Thursday. I am so nervous! Since the seizure, I have had a lot more horrible headaches with tylenol not helping. I was giving hydrocodone, which seems to help. I have been in a constant(ish) state of double vision for about a week now. Also, it seems my Diabetes Insipidus medicine isn't working as well, like I need more. I'm so nervous for this appointment because I feel like there is no way it will end positively. I really am trying so hard to stay upbeat, but it is so difficult when you're reminded every time you can't do homework because you're seeing two sets of keyboards.

I've worked so hard this semester. I have As in all of my classes, which I haven't done since I started college. I am so afraid it's all going to go away if my appointment doesn't go well next week. I'm so afraid I'll have to start a new treatment or that I will need surgery or something. I want to be positive, but it's so difficult when there are a lot more worse options that could happen...

Comment by Debbie Higgins on October 28, 2010 at 7:17pm

Well Beth and Alice, after reading what you have to endure, I am just going to pick my self up and not complain any more! I do have a supportive husband who has taken care of me. Although he has said he is tired of hearing me complain. But I know he is not going to leave me and he loves me just like I am.

I also have a job I love. Actually I started it only 6 weeks prior to the brain tumor diagnosis. They have also been very supportive. So I am blessed and I am going to focus on what I am thankful for instead of what I have lost.

Beth, I started a cancer support group at my church after I lost a very close cousin and my father to cancer. I ran into some of the same problems you have had here. For a year, I had support group meetings, lined up speakers and had a great program, but no one would come. I had 4 people who were cancer survivors who wanted to help and in the whole year only 6 people came. It does bring you down. All you can do is keep moving forward. And know that if you have done all this work and helped only 1 person, it is well worth it!! I personally have found some good information here and it is so nice to know you are not alone in your feelings and your tears. Thank you for everything you have done!

Comment by alice jena on October 28, 2010 at 4:19pm

This is what i need right now. I am almost two years post op- from a craniotomy to remove two meningiomas.
My situation is, even though I am feeling much better, I have constant stress and anxiety due to having a horrendous divorce. The divorce occurred while I was "growing" the tumors, I guess. The "was-band" left me after 27 years of marriage.
Now, three years later, I am still going to court. The divorce is final, but I have to try and get the "was-band" to settle the health insurance problem. He was supposed to keep my health insurance at the same rate that it was pre-divorce. he decided to decrease his insurance premiums, and increase my co-pays! This occurred two months before I was diagnosed for emergency brain surgery.
He has no mercy, or care for my financial stress. His family never even called me or expressed any concern for me or my condition.
I need to go for a check-up MRI, and am putting it off until after the court date that is scheduled for 11/3. For the last 3 years, the court dates have been adjourned due to the wasband, his layer, my lawyer, and the judge's need to cancel. With all of my physical difficulties, I never canceled. I even had a total fracture of my Left ankle, with serious surgery to correct that six months after the brain surgery. Still I dragged myself to court, in horrid pain, and that was canceled too.
I am so obsessed with this financial and court situation. The coverage did not even cover PT I needed for a current painful virus I have.
I am lucky to have a fabulous therapist that has been there for me ever since I had the mental breakdown when he left me. By the way, the "wasband" left me because Scientology told him to. He followed the cult, and did what he was told to do.
Thanks Beth, for giving people a place to vent----I really needed to do that. I hope that I finally get through with court dates, and can pay medical co-pay expenses that are not so high. I wish everyone good health and happiness. Love & peace, alice

Comment by Beth Rosenthal on October 27, 2010 at 11:04pm

I feel guilty having these feeling since I'm pretty much done with my treatment. I mean there's always a chance the MRI could show something, but other than that my pain is being treated and I just have to deal with my balance and weak left side. I'm really not satisfied with most of my life now. I don't feel that my friends really get all that I've endured: only 1 friend/co-worker walked at the brain tumor walk on the 17th. It's pathetic that no has has offered to walk in 5 years. So I'm not bothering with them anymore. I feel like I have my in-person support group and the connections here, but that's not friendship yet.
I don't have a boyfriend and I'm more concerned with friendship now, really.
And my career is also a big disappointment, but I won't get into that. It's hard to feel that things will really improve. How do you find a smile?

Comment by Debbie Higgins on October 25, 2010 at 6:58pm

Kayla, I completely agree! I had periods of depression when I was going through radiation. I was so tired and tired of being in the house; it was last winter when the weather was so horrible. As I approach my 1 year anniversary of diagnosis and surgery, I find myself lost in deep thought more often and again, periods of depression and anxiety.I have always been a very joyful person. I hate being alone at home; I just want to be out enjoying all life has to offer.Sometimes I get a headache from talking to much or too loudly and from all the "excitement" of being out among people. Like you, I believe it is part reaction to the reality of it all, hormones and just being a woman. Glad to know someone else has these same feelings.

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