ANA Discussion Forum
Post-Treatment => Cognitive/Emotional Issues => Topic started by: petgroomer on February 11, 2010, 08:15:52 am
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Hi all..
Just trying to take a poll as to how many of you were tired post op. I am in the watch and wait, and over the past year, I have gone from being a 7 a.m. - 2 a.m. girl... needing little sleep, to being a 8 a.m. - 7:30 pm girl...
By 7:30 pm,, I am passing out on the couch. It is almost painful to try and stay awake,, which trust me,, I can NEVER stay awake. Feels like bricks are pulling my eyes shut.
Even during the day, I am feeling so exhausted at work... I sometimes want to just cancel the rest of my day and go home.
If I am actually doing something at night, like a cards night, I tend to get through it..
Any idea what may cause this?
I used to have trouble sleeping (had alot on my mind), now I don't.. lol I still do wake up in the night, but I am easily able to fall back asleep.
Thanks in advance for any input on this... :)
Rhonda
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Hi Rhonda
I'm going to ask you see this thread:
http://anausa.org/forum/index.php?topic=10572.0
In this thread, there is a link for the "Brain Tumor and Fatigue" brochure, put together by Dr. Peter Black and Nancy Conn-Levin. Many here have gained insight into how fatigue affects ALL types of brain tumor patients (malignant and benign). Many here, over time, have read the brochure (a short/easy read) and have gained from it.... please take a look .... even though your's is vagus nerve (not AN), it still falls in line with this.
Also, I believe you converse with Rick on the CK forums... send him a message and inquire. I believe, if my old-age memory serves me right, he may have run into it as well with his vagus nerve issue. Just a thought.
Hang in there... I think you will find the brochure very insightful.
Phyl
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hi Rhonda
I use to work til 11pm at night, come home( sometimes an hour to get there), and usually play on pc with a cup of tea before hitting the sack @ 1;30am and then up at 630-7ish am....Now post op, I only work 5 hours ( again an hour one way drive, so really its a 7 hour day) home by 9pm in bed by 10 and up at 7am....
JO
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Phyl, thanks for posting that thread. Rhonda, I too had tremendous fatigue prior to my diagnosis. I felt tired all the time and would often need a nap right after work otherwise I did not have energy to make dinner. I just thought I was burning the candle at both ends and suffering from extreme exhaustion. Then I found out I had a tumor.
Immediately post op, I slept a lot. Naps and early bedtime (8:00). I am almost 4 month post op now and my energy level really ramped up. I don't remember feeling this awake in a long time. Now I go to bed around 10 or 11, sleep very very well, and rise "almost" effortlessly at 6. Take good care!
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I am w & w and have found I become very tired when I have spells of increased symptoms - like just at the moment.
My husband says I have 7 o'clock legs as when I have sat down after dinner I often barely move!
As I said it does appear to come and go - a few weeks feeling really fatigued and then I'll not be too bad for a while -
hoping when I have it removed things will improve for me as I had a lot more energy before this thing took hold..
Nice to know it appears to be 'normal' though ;)
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Rhonda ~
As you've undoubtedly guessed by now, having an acoustic neuroma or, in your case, a vagal schwannoma and all the compensations your brain has to make to deal with the deficits it induces can certainly cause fatigue, which is what you're describing. I found that even post op & radiation, I still don't have the stamina I once had. However, I can attribute much of that to age. My only suggestion is to adjust your schedule to your body's needs and sleep as much as necessary. This may infringe on parts of your lifestyle but frankly, that is probably going to be unavoidable. These tiny tumors are insidiously life-altering, even in the best-case scenarios. However, they can be handled, as many have, so I'm confident you'll surmount the fatigue obstacle.
Jim
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Rhonda,
Before my surgery I was EXHAUSTED all of the time. It was the most bone-tired, tired I have ever experienced. It was all I could do to make it until 7pm to fall into bed. Since my surgery the fatigue is improving, but my energy is not back to 100% of what it was a few years ago. I plan to try some modifications to my diet and exercise soon and see if that helps. Also, during my pre-op bloodwork they found that I am pretty anemic, so I need to address that.
I think fatigue is a pretty common symptom. Unfortunately! :D
Lyn
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Awesome feedback guys and gals!!!!
Phyl, some of the old thread you posted above actually brought me to tears as I read others emotional rollercoaster rides that they are on. To know that the article brought a light to their dark tunnel was great!
I read it also and can so relate to so much of it.
To all of you who responded above, I thank you for taking the time out to answer and it is so much of a relief to know we are all of the same symptom pool and can empathize. :) I have started a website for vagal schwannomas to give others answers and support as this site has done for me!!!!!! It is amazing to see how we all share the same feelings and symptoms and fears.
Please know that I am eternally greatful for all of you and I send this site to any new person that I encounter on the net who as a new schwannoma.
xoxo BIG HUGS !!!
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Hey, check this out!!! :) sweet info :)
http://www.nfauk.org/uploads/NF2%20-%20Vestibular%20Schwannomas.pdf
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I too was very exhausted before and after my AN a totally different feeling of exhaustion but at first I just attributed it to just getting older....
Best Wishes,
Pat
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I was never tired prior to my surgery.
Post op, like most, I had major fatigue for several months - but that's perfectly normal due to the long surgery and the anesthesia.
The times I'm tired now are when I just don't get enough sleep; having had an AN doesn't seem to be relevant for me.
When I sleep on my "good" ear, I sleep very soundly because I don't hear anything at all.
Jan
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My reaction has been similar to Jan's -- no fatigue prior to surgery; very prone to fatigue for a few months after surgery; and have long since been back to pre-surgery level of energy.
Catherine (JerseyGirl 2)
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I have battled fatigue since my 2 brain surgeries to remove the tumor and repair the leak.. I didn't care too much immediately post-op, because I was taking percocet for pain and I had lots of support. Now that it's been almost 10 years and I still am so very fatigued and dizzy, it's very disheartening. When I was working, it was much worse. I would work and that's all I could do. I had to come home and immediately lay down. My kids have been neglected for 9 years (I have 5 now). I was also very ineffective at work due to this fatigue and other symptoms. I am an RN, and it was so hard. I would drive to a client's home, and when I got there, I felt like I needed to lie in their bed and go to sleep when actually it was my job to take care of them. I was always behind in paperwork. Well, after 9 years of trying to "live my life normally, so my other side would compensate" as the surgeons told me to, I gave up trying to work. I am out of denial. I have come to terms that I need to recognize my limitations and abilities as they are now. I still suffer from fatigue; my family is not taken care of as they should be. They have been robbed of their mother and wife. I look at all the other mothers and I feel so inferior. I can't even smile appropriately at my children. My third daughter would touch the side of my face and ask why it goes down and not up when I smile. I'm sorry, I know most people on here try to stay positive, but I HATE what the tumor and surgeries have done to me. I was attractive, energetic motivated and inspired before I went through this. It has taken so much from me. However, it gave me my relationship with God back. Out of desperation and paralyzing fear, I turned to my faith. I'm just working on the "joy in suffering" part of it :) Sometimes I think I would have rather let the tumor kill me than go through what the surgeries have caused. Fatigue is difficult, because you can't explain it to people. Even my pastor won't accept that as a good enough reason to miss church. People look at me and don't see my disability (until I smile, but even that doesn't begin to explain how sick I feel). And I HATE explaining it to people. It's such a downer. What can people say to you when you tell them you had a brain tumor? It's depressing, and I don't want to complain. I guess that's why I wrote all this here-sorry- I don't talk about it.
I just re-read this, and really the most important thing in life is God, so I should be grateful. My flesh is just so weak-it wants to feel right again and have the energy I need to be a wife and mother. Why does God give me all this to do in life and take away my energy? It's my thorn. His grace is sufficient for me; but God help my children (who never have clean clothes to wear, don't bathe enough or brush their teeth enough, because I'm too tired to take care of it.)
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Gina ~
Many hearts are going out to you today and even more prayers are being said that your suffering will abate and your spirit be lifted. Lean on Him and know that He loves you. Know too, that nothing is permanent in this mortal life and the way you are now is not necessarily the way you'll be tomorrow - or next year. Seek His will for your life and please believe that you'll always find non-judgmental friends on these forums who know what you're dealing with because they've been where you are, now - or something close to it. We want the best for you and support you in our thoughts and prayers.
Jim
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Jim,
Thank you for your encouragement and prayers. I can tell you are a follower of Christ. He tells us to build each other up, thus you are in obedience. I feel embarrassed for exposing so much of my pain. I've been trying to get on with my life ever since my surgeries, and trying to be the same person I was: working and taking good care of my husband and children. However, it's just not working.
I don't think denying all these issues and feelings works: coming here for support from others who understand is most likely what I need (when I get a chance ;)). I always feel better when I see that people can relate, and I am not alone.
I think yesterday I just wanted to get all those bottled up feelings out into the universe! BTW, I think I was a bit of a drama queen saying my kids don't bathe or brush. Sorry. They don't bathe every day, but they do bathe a few times per week. The bright side is we are conserving water and oil (used to heat our water). In addition, they are learning to take care of themselves by providing for their own needs, like brushing, eating, cleaning, laundry. My 11 year old even knows how to run the washing machine and dryer!
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MamaGina,
I am a wife and mother of four sons. My sons are older, but at times act like babies. I'm 50 and I have been having gynaecology problems along with the facial neuroma. Last week I had a D&C. The general anaesthetic played havoc on my body. My occipital nerve is raging mad because of the angle my head and neck was placed during the procedure.
My entire life changed Sept 2006 when I had surgery to debulk the tumour. I was the energizer bunny who could go and go and go. I worked full time for 19 months after the surgery and like you that was all I was able to do. At the moment I am on a disability from work and it remains to be seen as to what they are going to do with me. I suffer from dreadful headaches, facial pain, depression and dizziness. I've been for therapy and I continue to go. I may have to apply for Canada Pension Disability.
I admire that your relationship with God has gotten stronger. I was born and brought up Roman Catholic, married Roman Catholic and I raised my sons Roman Catholic. (The scandal going on at the moment at the Vatican is sickening but that is a man made issue and not what I'm discussing.) I have lost my faith.
I lost a dear, dear friend at the age of 31 to cancer. Another girlfriend at 48 and her husband 15 months after she died. They left a 22 yr old son and 17 yr old daughter. My 3rd son lost his dear friend to cancer 2 days before his 18th birthday and now I've got my best friend who is terminal. I am so lost and I feel like I am sinking in a dark hole. I do not understand all of the suffering. There was a miracle, a family member through marriage who had a heart transplant 16 yrs ago was in a coma and on life support will be going home in a few weeks and he isn't Christian he is Baha'i.
I know there is only one God. I see all the pain and suffering, I feel pain, I just need to find my way back. My favourite passage from the Bible is from Matthew, about "Love Being Patient and Kind" and I believe that with my entire being. I need your prayers my friends more than you will ever know!!
Anne Marie
PS Thanks MamaGina for opening up your heart and soul. You have allowed me too.
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Yardstick / Anne Marie ... it doesn't sound like you have lost your faith but are just in a bad time where not understanding the why's of the way things are have you down and wobbling a little ...
My mom is battling breast cancer , my dad fighting lung cancer ... had a friend and her 2 sons brutally murdered in October by the ex boyfriend of the 16 year old , 3 kids at school lost a parent each in the weeks following the murder and then the mayor of the little town where my girls school is located lost his mom when a former renter of hers killed her for a couple thousand dollars worth of jewelry ... there were days when I thought where is God ??? ... a natural response we humans have in response to life altering experiences we have ... we doubt ...
Thoughts and prayers coming your way
Mama Gina ,
I am tired all the time ... I was tired pre-surgery ... not sure if from tumor effects or from lupus as it can cause fatigue too...but after surgery it became a major problem ... as Beachmommy said ... I too sleep like a baby sleeps , intermittently and around the clock …I probably sleep more hours now than before surgery but it is broken into 1 -2 hour stretches and I don’t feel rested … if I sleep 3 or 4 hours in a row I call it a full nights sleep …
I too have feelings that I am not doing enough for my family … they don’t always have their clothes all washed or what one wants to wear is washed but I forgot to pop it in the dryer …. Or it is wrinkled because although I got it washed and dried I may not have taken it out of the drier and it is wrinkly … sometimes this can be fixed with a damp rag in the dryer and a quick tumble …or the iron if there is time … I cook but have been leaning to fast meals …fewer favorites that take longer to prepare … and fewer deserts because they take time and somewhere along the way I decided they were not necessary to life … sometime I am snoring instead of doing something with them as I used to … and with this comes guilt …
then my husband takes up where I leave off and this makes for more guilt … he works all day at his public job , comes home to farm work and then finishes things I have not got done …I am learning to not be so hard on myself … I have multiple health issues that keep me spinning …I know with my head I can’t do all I used to do …getting my heart to know that is harder …
and when really down I come here to vent and look for help and answers to what has gotten someone else through a rough time that is similar …and I quote my now 10-½ year old with a sentence she said to me shortly after surgery when I was down and mad at the world and just generally pissed off … I had said I wished I had not had surgery … she said “but Mom , you are still breathing †… an option that doctors told me would soon be gone without surgery …
Remember that you are more than a laundry maid and cook … your kids don’t have to have a bath every day , and your house doesn’t have to be spotless … I bet that your family is like mine … happy to have you here with them …and your kids will learn and grow in good ways … as you said , your 11 year old has learned to wash and dry clothes … mine have this mastered (maybe not exactly as I would but my husband has not ended up with pink underwear ) and they also have learned to cook simple things without help aside from me sitting to the side watching …
someone here once said that we need to learn to give ourselves permission to feel bad …we have been through a lot and for some the recovery is longer than others and we may always have things like headache pain , fatigue , facial paralysis etc to deal with …I am still learning to give my self permission to be down , but to not dwell on it to the point of it feeling like I am a failure …sometimes I forget and beat myself up over it and that just makes it worse …
Take Care …
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Mama Gina, Beachmommy, Anne Marie,
Thank you for sharing all these thoughts, trials, burdens and hurdles. My heart goes out to each of you. We all have a very different road of life now, and it is not easy.
I too think "Why God?" after reading all you gals have been through.
God does not give you more than you can handle.... yea right! I understand the wavering faith. I've been there too, but know that all things happen for a reason. It is just so hard to know what that reason is.
My prayers are with each of you and all those who suffer these symptoms that can't be "seen" to others.
The prayer of serenity is my mantra. Just get through one day at a time..... Hang in there ladies.
Maureen
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Oh yea, and I have the fatigue thing too. I did the acupuncture and it has helped my well being. I would definitely recommend it if you can afford it, it has really helped me.
Only problem is I will need to go forever! I like it that much. I'm down to once a week just for well being, anxiety, stress, fatigue etc. It rejuvenates me :)
I started it for the facial paralysis which helped a tad, but now enjoy it for well being.
God DID answer my prayers, with my facial paralysis. I'm in the right place at the right time, and insurance is covering plastic reconstructive surgery in May for my smile restoration and cheek muscle implant. In that respect I am eternally thankful. Now if I could just get the screaming tinnitus to go away :o
Just a thought on the acupuncture. A traditional Chinese acupuncturist.
Peace,
Maureen
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Fatigue is just my normal state. Thank you for all of the words of encouragement. :-* (No stinky breath, I just brushed my teeth!) ;D
I also understand the guilt when my husband or one of my sons picks up where I left off. However I did manage with the help of my husband host Easter Dinner. It was a event that totally exhausted me, but who wouldn't be exhausted after cooking and cleaning for 20 people.
If anyone finds that dam energizer bunny send him my way because he's mine!
Anne Marie
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I just read all of your posts..the thread isn't knew, but my reading it is. I can't say it often enough that hearing all the problems that others have helps me also.
I feel so different from the rest of the world. Trying to explain wonky head to non-an people is very difficult. The same goes for the noise in my an ear. It is so overwhelming most of the time that it prevents me from concentrating on the task at hand...it also prevents me from hearing and understanding normal conversation or sounds with my non-an ear. Most people translate noise in your ear as a ringing, but it's not...mine seems to be as if I can hear all the nerves firing all at the same time...it's like a very loud static or open microphone sound...a white noise that totally wipes out all other sound. I struggle with depression, anxiety attacks, and melancholy. I have no energy or desire to do much of anything. I simply sit around all day numbly watching tv or surfing the internet. My an-eye doesn't focus well...I have to use Refresh lacri-lube in it all the time simply to prevent the irritation.
I was a computer programmer and analyst...I was laid off from my job 2 days before my initial visit with the ENT that sent me to a neurosurgeon a week later. I understand now why I was having so much difficulty performing my duties on my previous job. I can't concentrate on anything for very long. I'm easily distracted from everything I do. I used to read a lot...could knock down a paperback a day. Now, I can't read...my eyes have trouble with small print. I'm unable to look for work until my brain chooses to allow me to concentrate and stay focused...until my tinnitus stops distracting me, and my eyes allow me to see a computer screen and read printouts.
I keep saying I want my life back...right now, I'm not sure I'll ever be the same as I was pre-an. The one thing that keeps me going is knowing that all of you have many of the same problems I have and that w are all here for each other.
Thanks...Pat
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Pat - I remember writing to you a while ago. I'm sorry you're still struggling the way you are. Are you walking better now? I think we should make a plan to meet if you are able to get out. I'm doing well and I think it would be helpful to share experiences over lunch if you have gotten to a point that you can go out. Not many people understand this condition. I didn't expect to find someone else in town who has this problem.
Do you still have my phone number?
take care~
Nancy
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Hi, Nancy...
I am living in Nebraska now...I sent you a personal message. Hope this finds you well.
hugs, Pat
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Another post ANer struggling with fatigue, even after nearly nine years....very difficult at times and I'm thankful for a supportive husband who picks up the slack (even though he doesn't cook). Prior to surgery, I was a stay at home mom (five boys, then ages 4 - 14) and still stay at home full time with now four boys ages 12 - 21. I could not imagine having to work outside the home - that would do me in totally. I now have the freedom to take a nap if fatigue overwhelms me and I try to get at least nine hours of sleep at night. We manage on one salary by living simply and it works for us.
All the best to all of you. I don't post often but do visit this site once a week or so.
Cecile
PS Just in case you guys think that I don't do anything staying at home, I bake everything, including bread, have a huge garden to maintain, make jam, can fruit, freeze veggies, do heaps of laundry and volunteer within our church. I am so blessed!...tired, but blessed.... :-)
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Cecile,
I see why you are tired all the time! That is WORK,girl .Just the thought of doing all that baking and gardening, etc, makes ME tired. I would LOVE to come to your home as a dinner guest!
I was tired before the AN, so it's no biggie for me. I factor in a nap every day, or else........Try it.
Just let it all go and rest/meditate/nap or whatever. It really helps me be more productive for the rest of the day.
Maureen
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Hi Cecile,
I don't know if you still remember me from the ANAC message board - It's been a long time.
Your fatigue may be due to you working very hard. Being active is good for your health and well-being. But when it's done excessively, it can harm you, Cecile.As a result, many illnesses are thought to be affected by accumulated stress, whether the illness has been either brought on or worsened by stress .You don't want to get another illness- It can be frightening and can add to the emotional/physical fatigue that you already have.
Take it easy and rest plenty.
Sincerely, Odete
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Hi Maureen and Odete:
I do know that being very much on the go with a bunch of boys does tire me out. The odd thing is that if I keep moving, the intensity of my headaches are less. I have learned to say no to many requests for help, especially within our church, and I do feel that some folks just don't get it. Sure, I had a brain tumor but that is history and I have to move on (I can hear them think this.....) It was extremely difficult for me to admit to myself that I have to back off helping others and focus just on my own family. Baking and gardening are more like hobbies for me and perhaps even therapy if I'm making any sense. All the best to all of you who are struggling with fatigue. Having gone through this AN journey has made me realize God's amazing provision for our lives and given me a real sense of what it means to care and pray for those in need.
Cecile