ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: G2 on December 26, 2010, 12:41:20 pm
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Hello:
I am new to the forum and I am glad I can find a place to share and discuss the AN issues.
In the pas few days I feel like my hearing on the AN side is decreasing. I am lucky it stayed at the same level post-surgery as it was pre-surgery. Not great but gives a sense of normalcy. I am very worried of getting completely deaf on one side but I am even more worried that this thing starts growing again. I would want to have an MRI right now. Besides I have had a "wonky" head all the time since surgery, worsening of my vision, difficulty to focus and concentrate, especially a problem at work. As a result, I oversleep these days. I don't want to face it. I must add that I had depression before surgery and that AN is not helping.
About a month ago I started having bouts of anxiety/nausea. Before I was in a more positive spirit, thinking that it would take time but that I could handle/manage it as long as I didn't focus too much on it. Right now, - my Christmas gift! - is that I am completely consumed by the worrying. I have evrything to be happy in my life but the AN shattered it. I am fustrated, depressed, angry. Sorry it sounds like complaining, and I guess it is. The problem is that people around have a hard understanding what we are experiencing and they sometime think that we are not making the effort. As I put it, it seems that it takes me 10 times more energy to do the same things as before. I try to exercise regularly but I don't run anymore because of the balance issue. It feels like I have a fish bowl in my head (as I read it from a post).
I say that I would rather go that continue to live like that. I am sorry but that's my state of mind at this point.
If some of few of you have the energy of giving me some encouragements...it would be great!
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Hi G2,
First off, be welcome. I'm sorry about your AN and that you needed to find this place, but I am glad you did.
Second, you are here at a safe place to vent, complain, and talk about your feelings. We understand in ways the Normies don't.
I am not a psychologist, let alone a doctor, but let me suggest that your feelings of anxiety and depression are probably not unusual for someone recovering from a brain tumor and surgery. I have not had anxiety attacks since I got sprung from ICU, but I have had to fight against depression. I have had what I consider a long, but relatively "easy", recovery from a 31.5 hour surgery (although one of the surgeons remembers it as 36 hours...so I am not sure about the length, I was asleep) to remove most of a large tumor. When I finally awoke after surgery and found myself in ICU with a breathing tube and told how long surgery had gone, I had a very bad time. The left side of my face was paralyzed, I had double-vision, and I was dismayed by what my family had gone through (and that got worse worse when I heard some of the stories later). When the breathing tube was removed, I had no voice and very limited ability to swallow.
But, it got better.
Years ago I was raising a son with mental illness and PTSD. My wife was clinically depressed and I had a younger son with needs of his own. That experience taught that half the battle is simply getting out of bed each day and moving forward. If you can do that, you have the opportunity to fight through a lot of difficulty. Going back to those lessons, made getting through this much easier.
Another thing that helps is being able to articulate how you feel. You say you are "frustrated, depressed, and angry" and "worried about this growing again". Sounds like a good start to me. It also sounds like a number of other people around here, including myself. While I am fortunate to be able to insanely positive at times, it is not easy, and everything does take me more time and effort to do.
In short, you are not alone. You might want to cut yourself some slack and realize that maybe you aren't so far off "AN-normal." If you are really concerned about how you feel, it might be good to see a counselor/psychologist/pastor and talk about some of these things face-to-face. A local AN or brain tumor support might be worth visiting, if one exists.
Whatever you do, don't give up! Life is very good.
-Tod
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Hi G2......just want you to know you are not alone...I am 3 1/2 months post surgery and am feeling very frustrated also. I actually wrote on here under "heavy head" just the other day. I am trying to understand this "an time line"......when I was first diagnosed with the tumor, I was so scared I felt numb most of the time and was on automatic pilot. Then when the surgery was over, and all was fairly well, I was so happy that I survived and was filled with such euphoria that I swore nothing would ever bring me down again!.....Then, I started to feel better and started to do more and started to live my "normal" life, but now I see my limitations from the surgery. I am exhausted all the time, I have that heavy head feeling most of the day, and I am feeling down. So, I know how you feel. I have an appt with my neurologist this week just to sit and talk to him about this healing process.
I am very thankful that he suggested this website to me when he diagnosed the tumor. It has been a lifesavor....it truly is a slow recovery. I hope you start to feel better and I will let you know of any tips I get this week at the doctors! Kathleen Anna
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Hi, G2 ~
Thanks for taking the time to find the ANA website, register and post your 'debut' message.
Your frustration and anxiety are pretty normal and have arisen for good reason. The fear of tumor re-growth is always the metaphorical '800 pound gorilla in the middle of the room' for almost all AN patients. No matter how well we recover, there is always that thought lurking in the recesses of our mind: 'what if the AN starts growing again'? Those 'what if' thoughts can make us miserable, even when our physical condition is rather average for a post-operative AN patient. When you have the kinds of issues you've described, the risk of developing depression is increased. Because the kinds of post-op problems most AN patients struggle with are invisible to others makes understanding sometimes hard to come by. This is due to the fact that most people, even family, that haven't gone through the 'AN experience' can't really empathize with the wonky head feeling, vision/hearing deficits and the fatigue that often plagues post-op AN patients, so you feel somewhat isolated and left to deal with your fears and physical problems by yourself. Many of our members have 'been there', dealing with unsupportive families and friends who assume that since the tumor was removed, you should be 'over it' by now. We know better.
Tod gave you some excellent advice so I won't waste your time repeating it but I do hope you consider his suggestions and try to realize that although things are rough today, they won't always be that way for you. We have many posters who can attest to the validity of that statement based on their own experiences. These are ordinary but courageous people that surmounted physical and emotional problems (sometimes severe) stemming from their AN surgery and came through the experience in good shape and now try to help and encourage other AN patients via these AN forums. They are eager to help. That's why we're here - so I hope you'll continue to use the ANA decussion forums as a source of encouragement from folks who have been where you are and completely understand your problems and concerns.
Jim
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Thank you all for your very prompt responses. This definitely makes me feel less lonely in my struggle. As you say only those who are/have been affected by an AN themselves can truly understand the feelings. I never talk about it at work because people would say that I keep complaining and that I have to look at the positive side instead. I agree but this life has become more challenging since the AN entered it. Anyway, I have to and want to show that I am able to perform as anybody else. I must admit that I have a pretty stressful job in the pharmaceutical industry which probably does not help.
But thanks to you –today-, my partner and my family I again feel like I can overcome and that I can enjoy life again. It is amazing how we, humans, together can overcome bad stuff. Still I should expect the road will be full of bumps.
I have to talk to my surgeon....I hope this week, and see if I should get an MRI sooner than next the one scheduled in May next year. Worrier as I am I cannot see myself waiting that long. My last MRI was in September, four months post surgery. Now should this AN be growing again, I would face again this decision of surgery vs. radiotherapy, besides the anxiety that I have known before the first operation. I guess one thing at a time, and let’s deal with things as they come. I also need to see somebody to help me with the depression and anxiety.
Thank you to all you again for responding so quickly and help me deal with this challenge.
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G2, I am glad you are feeling more positive. Re-reading your post also suggests to me that you might benefit from seeing your PCP to rule out any ear infection or wax build-up. Sometimes we forget to explore the simplest explanations when we are so worried about the 800 lb gorilla.
It sounds like you have a plan to pursue, go for it. Anything that can help relieve your concerns will be good. Keep us posted on what happens with you.
-Tod
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Hey G2...........things could be worse, you could have bilateral ANs.
I was exactly were you were at 6 months post op, depressed, feeling sorry for my self, etc. I told my Dr. that the deafness in my left ear, ringing in both ears and the yucky wonky head feeling was really depressing me. I was hoping he would prescribe some happy pills and everything would be back to normal, but he explained that this would be my "new normal". Well, I figured I couldn't do nothing about my "new normal", but I could do something about the daily pitty party I was having........so I did, on my own. I kept thinking that things could be alot worse and we as people with ANs are fortunate to come out of all of this pretty much in good shape. Today I can do everything I was doing before, albeit not very gracefull at times, and to look at me you would never know I had two brain surgeries and was SSD with another AN still in my head.
I didn't mean to come across too strong by saying it is worse to have two ANs. I was just trying to make a point that things could be worse, and that this way of thinking is was got me out of my depression.
Hope this helps
John
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Hey there G2, let me share a story with ya they I hope helps. In Oct 2006 I was back in the hospital to have my AN surgery, 6 months earlier, I had surgery to remove a 3.5cm golfball removed from my brainstem. After the surgery and resting in the hospital room, I had found myself consumed with self-pity, depression, and yes hopelessness. I still cant' explain it, those feelings go against everything I am. I have always faced danger with a smile, and the confidence to always win. I wouldnt' eat or converse with the Hospital staff. The charge nurse came into my room, and asked me to walk with her, of course I put up some resistance, but eventualy got out of bed. As we walked down the hallway, she asked if I was having feelings of hopelessness, and if I felt like "Why me". Then the paint on the hallway walls' changed to a sky blue, with white clouds. I could hear crying, not just from one area, or one person. I looked into one of the rooms we passed, and could see an entire family kneeilng next to a bed, with ballons and stuffed animals everywhere. A small child was laying in it, with bandages wrapped around her little head, and a "Halo device'. I then was overcome with the feeling of being ashamed, ashamed I let myself feel self-pity. I have never let that emotion back in. In one week I will be in the Hospital for my fifth surgery in 6 years, I go with the attitude to win, and I share that feeling with as many people as I can, I never know if the person sitting next to me in the waiting room is a parent or family member of another child who has yet, or may not, experience the wonders of life, that I have.
Sometimes its' better to walk, than run in life.
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Hi John & Welcome!
I do not suffer from "wonky head" which I am thankful for. There are lots of posts on that topic. You may want to put those words into the search box on the upper left hand corner and you'll read a lot of interesting perspectives. You are NOT alone!
Also I notice your surgery was last May, so you are still less than a year post op. It can take up to a year, to feel a sense of normalcy, (the new normalcy, anyway :-\) so keep that in mind.
I suffer from the tinnitus/depression/anxiety (facial paralysis is another story) and am just now starting to feel better, after adding an antidepressant to my antidepressant! ::) Plus I have my hearing aide (BAHA) so that is helping with my deafness.
Like Tod said "Don't give up!" Of course there are times where that seems like the best option, but keep moving one foot in front of the other.Change your personal expectations, and DON"T go through the guilt trip when you have to do things differently. Your job definitely takes a lot out of you, so I would imagine you are exhausted when you get home.
I work very part time as a home health nurse, and I am exhausted when I come home.
It just takes time to kind of work through all this. We are here for you, and a local support group/medication help would be beneficial (some people don't like taking pills, but honestly it has been my life saver).
Okay, hope you have a good week, a new year is coming. Let us know how things go!
Maureen
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i seriously recomend a good spine DR.
I suffered 2 1/2 years w/ the fish bowl head.Everything your going through...try some lorazepam for anxiety..gabepenton for nerve /head pain..Vitamin B6..fish oil w/ D
Med after med.....See a pain specialist/spine clinic.
HUGS!!!
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Depression is very common. Don't hesitate to seek help.
Best,
Jan
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Mark, John:
You are full of life.. You are a lesson of humility to me. I completely agree with you about not letting self-pity get you but not everyone is made of the "same wood" though. I can tell you that I just want to get/feel better, get over it, enjoy life... we will see. Courage to you to keep up with this "double strke". You are admirable! It is so absurd in a way that I cannot understand why people get afflicted by such things. Thank you, thank you for your message. It puts things in perspective... I have to be strong just because of people like you.
G2
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Take it one step at a time and don't look too far ahead. I found at times that forcing myself to get up in the morning, dressing and opening the curtains to let in the light was enough for one day but it was important to take that step and not stay in bed which was what my head wanted to do. It's been nine years ago since my surgery and years and years of post op headaches which drained me of energy and still does some days. But, like I said, one step at a time, celebrate even small victories and don't be afraid to speak about your pain here. We understand!
cecile
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