ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: JustMe on October 21, 2008, 09:52:59 am
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Hi...
Another newbie... I'm scheduled for surgery Dec 16th. My company shuts down between Christmas & New Year's so I wanted to be able to take advantage of that PTO. Unfortunately I'm really struggling. I am sooo tired and am having a really hard time focussing. I have a pretty high level business position so this is not good. Is the fatigue and hard time focussing something everyone experiences? Any suggestions how to improve it?
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Welocme to our little group!
I never even knew I had a tumor until right before they took it out! ;) Every case is vastly different in the symptoms and recovery - I know that really doesn't help, does it? Hopefully someone can give you better insight!!
K
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Hi there,
It may be that the stress of waiting is what's causing you to have trouble concentrating. Once I was diagnosed it was pretty hard to do my job, which also requires a high level of focus and attention. Can you move up your surgery date? If not, then you'll have to get really good at compartmentalizing. Also, I would think that a therapist might come in handy for the next couple of months. Just an opinion.
Be well,
Marci
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i Justme,
I want to welcome you to our group, and I am so sorry you have a reason to be part of us. This is an amazing bunch that is supportive, informative, funny, intelligent and loving.
My guess is anyone facing this serious issue would have a hard time focusing to some extent. However, people are having some of us seem to have some issues with it. You can look under Post Treatment then to Cognitive/Emotional Issues. Hope that gives you some insight. I find if I am tired I have more difficulty with focus. Sometimes a short break helps, or a nap. Then of course there is the illusive good night's sleep.
Take care and keep in touch.
Mary 8)
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Hi, Just Me and welcome ;D
I didn't have any fatigue prior to my diagnosis or surgery, but I had lots of fatigue post op - most do.
As far as the concentration issues goes, it's probably just having too much on your mind - no pun intended.
It's normal and natural to worry about your upcoming surgery, the side-effects you will or won't encounter, etc. At some point, before your surgery you'll probably reach a level of peace and calm; a lot of us do.
Mind if I ask, how large is your AN? and where are you having surgery?
Just curious,
Jan
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My tumor is small 5.4x5.4x5.7mm on my right side. In addition to the headaches I've been having "episodes" for a year or more. Suddenly I feel light headed, all my color totally drains and my balance leaves me and I vear right. These "episodes" used to last a minute or so and were gone. Since Labor Day weekend they're becoming much more frequent, intense and lasting much longer, sometimes all day.
I'm being treated at the Univeristy of Wisconsin, Madison. On November 20th they're going to do another MRI of my head along with a MRI of my spine because of "how I present". From reading on this forum and my other research it seems my most bothersome symptoms are not symptoms of AN.
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Have you got a chance to meet Dr Gubbels who is at Wisconsin now. He was a fellow at Univ of Iowa and is super. He was part of my surgery this spring.
Cheryl R
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Hi,
You might want to read this: http://www.hearinglosshelp.com/articles/balancesystem.htm
This explains why you are tired. It's not easy for the brain to have to do all of this work that a compromised balance system causes! This should resolve itself in time.
Best of luck to you,
Sue in Vancouver, UA
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Sue -
Thank You so much for that article!!! I was really feeling like I was a train-wreck having symptoms it didn't seem others were having. This particular paragraph hit it exactly! and I thought I was just losing my mind!!!
"Unlikely as [/sub] it seems, vestibular damage can cause memory problems. Here is why. When you damage your vestibular system, keeping your balance is now largely a conscious effort, not the automatic effortless procedure it once was. Consequently, those areas of your brain that you once just used for thought and memory, now must constantly work on keeping you balanced. As a result, your memory may suffer. You may grope for words when talking. You may easily forget what is being spoken about during a conversation. You may be easily distracted. You may have difficulty comprehending directions or instructions. You may have trouble concentrating and may feel disoriented at times."[/i]
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Hi Just and welcome. Good to have you here participating and hoping that all here are sharing that will help you along this journey.
There is a brochure I had posted here re: brain tumors (all types) and fatigue and how they go hand in hand. It doesn't matter if it's malignant or benign, but there are definate signs of the relationship between the 2 (brain tumors and fatigue). If you click on this link, then scroll to the 2nd post by Stein, you will see in his post the link for the brochure, entitled: Brain Tumors and Fatigue... written by Dr. Peter Black of Brigham/Woman's in Boston and Nancy Conn-Levin, who recently did an ANA sanctioned support group meeting (I believe in NJ):
http://anausa.org/forum/index.php?topic=1969.0
You will need Adobe Acrobat or Reader to open the file (you can download for free on the Adobe website). The brochure notes the relationship, remedies, etc. Many here over the years have found it insightful and helpful. I share this with you now for the same reason.
Again, welcome.... and know we are here to help.
Phyl
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Hi JustMe-
I think that the fatigue and lack of focus you describe is fairly common in the recently diagnosed. I certainly suffered from the lack of focus! The reasons are probably a combination of physiological and psychological. Stress can definitely affect your abiltiy to conentrate - and I don't know of too many things more stressful than being told you have a brain tumor! ;D
Give yourself some time to process everything. And, if you can, try to lighten your load at work a little. As a business owner, I found that last bit of advice a little hard to take myself, but it is worth it if you can do it.
The decision to tell the people you work with about this is highly personal; in my case, I finally decided to tell my inner-circle of colleagues because I felt that they needed to know why I was so forgetful and "not present" sometimes. They were all amazingly supportive, which was a big help to me, both before and after treatment.
Hang in there!
Debbi, enjoying fall in NJ
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Hi,
I have balance, tinnitus and fatigue issues also! The Brain and Fatigue article is great
for understanding what you are going through! You are now part of a great site that
has helped me through my continuing AN journey! All the people that have responded have been
so much help to me as I read all their comments and support for all the people who
log on! Much luck to you in your surgery!
Pauline
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Interesting topic about fatigue. I had been battling fatigue pre-diagnosis for more than a decade. When I complained to my doctor he was always like "It is due to the pregnancies, or chasing the kids around, or stress at work etc". Looking back I realize that the period when this was happening coincided with the time I estimate the AN was growing, so I am pretty convinced that they are related.
I have been wondering for some time now, why do brain tumors cause fatigue. Is it that they release some sort of chemicals, or hormones, or is it because of their effect on surrounding brain structures? Any ideas anyone? Has anyone read any research on this?
Marianna
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Marianna, if you will scroll up to the blue paragraph, that explains why we lucky AN people can get tired. It all ties into the damage done to our balance nerve. Other tumors, I don't know why. I suppose it is because it is putting stress on the brain to have something there that shouldn't be. I suppose some doctor will take exception to that, but sounds good, huh? ;)
Sue in Vancouver
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Dr Sue,
Maybe you should talk to most of the Drs out there. Some are so stumped by the fatigue, focusing issues, headaches and facial pain. Some feel that the tumour has been removed so move on, the rest is in your head. Haha, I'm so funny....it is all in my head. I really hurt today :'(
Anne Marie
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Awww. Anne Marie, I'm sorry you are hurting. Hugs across the miles, and a kiss on the forehead. Well, let's face it, our head is the center of our universe and it's a darn fantastic place what with eyes, and ears, and all that thinking we have to do, and everything! Now, if some stupid thing goes haywire in there, our poor wee heads aren't very happy. Doctors specialize now and don't think about the whole body healing, or something along those lines. Maybe we need to build our own AN Spa Resort, where we can learn things, and get massages, and pedicures, and float in the warm water, and be pampered. We'd have Tai Chi and Yoga and healthy foods and soothing Yanni music and green tea and meditation and group therapy in the afternoon, and a bubbling brook to walk beside and it'd just be wonderful. *sigh* So go there in your mind, while you lay down and rest for a little bit, and just imagine yourself in a place like that, and walk around the beautiful gardens and the blue pools and the slight warm breeze rustling the trees, and somewhere somebody is cooking something that smells really good and later on you'll be having that for dinner. Then, after the body massage, the foot rub and pedi, and after the tea and scones, you can walk down the path to the ocean where the cove is waiting for you. There you can sit under the shade of a big umbrella and watch the waves roll in from the crystal blue sea, and the distant white clouds are pretty against the blue of the sky and the seagulls cry softly as they fly out to sea. It's the most beautiful, peaceful place you have ever been, and there is no hurry, no speed, no rush, no obligations to do anything but to rest and to enjoy your surroundings. You aren't even going to have to tip the wait staff, because it's all included in your free trip to this luxury Spa.
I hope this helps!
Sue in Vancouver USA
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What's the address? I'm there in my mind. Thanks Dr Sue, to my rescue! :-* :-* :-*
Anyone want to join Dr Sue and I?
Anne Marie
P.S. May be our Capt and Cruise Director can have a special place like this on our big old boat as we're cruisin the high seas!
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I want to come - I promise I will be quiet & peaceful...do you think it will stay this calm & peaceful with Jan, Lori & me there????????????????????
K ;)
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I was going to try to say something about ignoring the raucous Pirates over in the bar, but didn't want to disrupt the calming influence I was trying to convey to Anne Marie. ;D
Of course you can join us. *Psst, Anne Marie, there goes the neighborhood * ;) Then maybe the Goode Ship PBW can anchor in the cove, and the party can be on board, and Anne Marie, me and those of us at the Spa, can wander over to the party, once we have achieved our one with the universe thing. Ohhhhmmmmmmmmm. :D
Sue in Vancouver USA
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I can't believe I made all those errors in my post from 5:26. That goes to show how much I was hurting and what it does to my focus. No wonder I'm on disability.
Anyone see The Doctors Show today? Botox for headaches and a bonus for wrinkles.....I might see if my insurance will pay for this and than I'm off to Dr Sue's Spa ;)
Anne Marie
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I think I've created Fantasy Island! De plane, de plane!!
Sue in Van WA
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Sue -
Thank You so much for that article!!! I was really feeling like I was a train-wreck having symptoms it didn't seem others were having. This particular paragraph hit it exactly! and I thought I was just losing my mind!!!
"Unlikely as [/sub] it seems, vestibular damage can cause memory problems. Here is why. When you damage your vestibular system, keeping your balance is now largely a conscious effort, not the automatic effortless procedure it once was. Consequently, those areas of your brain that you once just used for thought and memory, now must constantly work on keeping you balanced. As a result, your memory may suffer. You may grope for words when talking. You may easily forget what is being spoken about during a conversation. You may be easily distracted. You may have difficulty comprehending directions or instructions. You may have trouble concentrating and may feel disoriented at times."[/i]
Solrry I am late to the discussion here, but I just wanted to say that I understand exactly how you feel. I have a small an on my right side that causes listing and frequent balance challenges too. On bad days, it can be really hard stringing 2 thoughts together. A small problem since I teach for the Park Service!
I know you feel like your symptioms don't "fit" most of those listed here, but neither do mine, and it seems like every time I read a post the new person doesn't think their symptoms "fit" either.
ANs are very individualized from what I have gathered reading the posts here. Research gathers symptoms across a broad range of patients and then distills it to describe the most common symptoms.
I am very interested in hearing about your experiences, since they seem so similar to my own. My AN is too small for treatment yet has a huge impact on my life. At this point I have to look for other employment because I can't stay where I work (7000 ft elevation) and I can't string 2 seperate thoughts togethr on bad days. So in many ways I am envious of your ability to move on to treatment!
Thanks for sharing,
Laura
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Hey Anne, just wanted to let you know I read article regarding botox for headaches and small amounts of botox being absorbed in the brain stem. Might want to check with your doctor before he injects you! Don't know if this study was a good one, and sorry I don't have the article anymore :(, but just wanted to give you a "heads up" here. You probably could "google" this to find it. I'm sure I was on Medscape for this.
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Hi Just and welcome. Good to have you here participating and hoping that all here are sharing that will help you along this journey.
There is a brochure I had posted here re: brain tumors (all types) and fatigue and how they go hand in hand. It doesn't matter if it's malignant or benign, but there are definate signs of the relationship between the 2 (brain tumors and fatigue). If you click on this link, then scroll to the 2nd post by Stein, you will see in his post the link for the brochure, entitled: Brain Tumors and Fatigue... written by Dr. Peter Black of Brigham/Woman's in Boston and Nancy Conn-Levin, who recently did an ANA sanctioned support group meeting (I believe in NJ):
http://anausa.org/forum/index.php?topic=1969.0
You will need Adobe Acrobat or Reader to open the file (you can download for free on the Adobe website). The brochure notes the relationship, remedies, etc. Many here over the years have found it insightful and helpful. I share this with you now for the same reason.
Again, welcome.... and know we are here to help.
Phyl
Awesome!! Thank You so much!!
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Hello,
I'm new to this as well. My two others posts are under general AN issues where I posed lots of questions.
I'm recently diagnosed; my AN's 1.5cm; surgery scheduled 1/29.
Loss of hearing is my most recognizable problem, but my head just feels weird all the time. I'm tired (but I don't always sleep well for a variety of reasons - kids, hot flashes !), also I have the constant ringing. I feel like the left side of my head is stuffed up with something. My head just feels off balance, but it's not really dizziness. I start sentences that forget what I'm saying. I thought most of what I've been going through is just from being middle aged. When I'm in an open big space, like a store or school hall, my head feels even more off balance. Sometimes I walk a bit like I'm tipsy. When I run, my head feels more clear and I don't feel off balance. Maybe because I'm concentrating. I don't want to complain to friends/family because I wonder if they just think I'm more aware of my problems now. I don't feel like this is stressed related, because I've been under more stress that this and don't feel this way. My symptoms are worse when I'm tired.
Any of this make sense to anyone?
Thanks!
Keri
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Ker,i
Yes it all makes sense to me. I sleep with the window open, so the night sweats are tolerable. My husband hates it, but an extra blanket on his side keeps him cozy. Fatigue and focus seem to go hand in hand. The two F's in this battle. There is no magic cure, other than listening to your body, especially when you come home after your surgery. I wish you the best, Jan 29 is just around the corner. Your friends and family may not understand everything you are going through but we certainly do on this forum. Ask away, comment and read as much as you can about AN.
As it has been said many times "Information Is Power"
Anne Marie