ANA Discussion Forum
Post-Treatment => Cognitive/Emotional Issues => Topic started by: Heather Craig on September 30, 2011, 09:13:50 am
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My name is Heather and I am new to this site. I had my AN surgery 07/10/2008. My tumor was on the left side where I lost my hearing and still have some facial weakness, headaches and alot of balance problems. I sometimes wonder if it was even worth having the surgey at all. Since my surgery I have noticed an increase in memory loss and I just wanted to know if anyone else has experienced this as well. I see that I share alot of common side effects with most of the people on here but I haven't heard anyone mention memory loss. I just want to know if this is a common side effect post surgery.
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Hi Heather
Yes everything you are experienceing unfortunately are common results of this surgery, i have had every one of those problems. The best i have learned regarding memory loss is that due to hearing loss and blance problems our brain has to over work to compensate for those deficits and in turn uses a lot of resources to do that, and those resources deprive our memory, because it leaves less resorces for our memory etc. Keep me posted on how you are doing. Good luck.
Mel
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Thanks Mel! I sure will and I'm glad I found this site. It's good to know there are real people who can actually relate to having an AN and surgery, and not just going off what the doctors tell you is normal or not.
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Hi Heather,
Welcome to ANA, you're with friends who are willing to listen, perhaps dole out some advice, but more importantly, you are talking to people who know EXACTLY what you are experiencing and going through. I had my AN removed 11 months ago, there are days when I regret having it done because my life hasn't returned to normal, and I am afraid this just might be the new normal for me, although my doctor keeps telling me I have more recovery left. I'm not going to give you a litany of my symptoms, but I have some of those you have mentioned. What might help you with memory is Omega 3 Oil. You can get it naturally by eating fish, I find a meal of salmon helps. I have also had a lot of success with Omega 3 through Flaxseed Oil. I would suggest going to the Vitamin Shop and speaking with a sales person that knows their stuff. Quality sleep also seems to help, and as crazy as this sounds, exercise your brain. I do by reading a lot. I hope this helps, please don't be discouraged, take one day at a time, and be thankful for all we have.
God Bless.
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Thanks again and I have to admit, 3 years post AN surgery and I feel like my side effects are worse now than b4. But I am still taking it day by day. Right after the surgery I was in so much pain it was unbearable but then I started to feel some relief. Now I'm so fatigued and memory loss and vertigo are increasing. I lose my balance and tip over just standing still. And please dont let me walk in the dark without turning on a light bcuz that would be tragic lol! But whatever i'm dealing with I just thank God Im alive and appreciate what I do have and know that it could've been worse. I see the doctor on tuesday so I can let her know whats going on and then probably another MRI...( im suprised i havent grown a tail yet from all the radiation) But im keeping my fingers crossed and my spirit lifted!
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Hi Heather .....
Mel is right about our brains using a great deal more energy directed at trying to hear and keep our balance that some of the perceived memory loss is really a refocusing that is happening.
The good thing about that is, time has a wonderful way of helping us to adjust. As we regain more balance and/or adapt to the lesser (or at least different) input of sound, these things become more automatic and we can return again to focusing on recalling events from our memory.
Right after my first surgery 3 1/2 years ago, I had significant memory problems. It was terribly depressing because I was so afraid this might be part of the "new me." As time goes on, my memory has improved to where I think I am essentially the same as before the diagnosis of an acoustic neuroma.
If, indeed, your symptoms are increasing, by all means check with your doctor.
For many years I have taken Salmon Oil capsules daily as a supplement, as well as eat fish at least once a week. Who knows? Perhaps that has been the secret.
Clarice
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Thanks for the advice Clarice. Since everyone is talking about vitamins I might just give it a try. I'd try anything to avoid another surgery or prescription meds that might alter me more than the AN already has :)
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Hi, Heather - and welcome.
I'm sorry to lean about your post-op problems. You've already received some good answers to your question regarding post-op memory loss so I won't belabor the issue beyond stating that even though I experienced an almost trouble-free AN surgery (and radiation) I have noticed some slight memory loss. I attributed it to age (I'm 68) but realize that it might well be related to the surgery and the increased work my brain has to do just to function relatively normally. Fortunately, it is minor and doesn't impact my quality of life. I admire your positive, optimistic attitude in the face of your post-op issues and hope things improve for you, soon.
Jim
P.S. MRI scans do not use radiation so not to worry about mutating/growing a tail. ;)
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Hey Heather...so sorry you've been having all these problems post surgery...I too have had some issues with memory loss. I was just commenting to my wife the other day how I've noticed how bad my word useage has gotten when I write. Maybe it's because I'm getting a little older (I'm almost 47) but I always have prided myself on my writing abilities. Also, it seems that my powers of name recollection are a little worse than usual. I can talk about someone and then a little bit later I'll try to remember their name...and can't! Most frustrating! But, all in all my experiences post surgery have been on the positive side. I tend to be the glass half full type person anyways, and my outlook on that hasn't changed. Take care, hang in there Heather! And keep venting....we know how you feel! :)
Jay
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Hi and welcome to the ANA Forum.
I'm having the same problems especially with Jay. I even spell wrong when I'm typing emails. I even forget sending emails and send again. I called an audiologist near me and he returned my call and I have no recollection of that. I called them and the secy. said you talked with him last week. I stop mid sentence and forget what I was saying. It's really awful. I took a two day neuropsych. exam and my IQ went way down especially my vocabulary. It didn't halp that I was having a headache during the exam.
Mei Mei
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Dear Heather,
I just found another example on my Facebook messages that I don't remember writing at all. I am very embarrassed by it and how could I have typed such nonsense? Someone at the Symposium said this was happening to her and many in the room agreed.
December 22Seroun Mei Mei Wang
Hi Mami,
I think of you so much and wonder hare you are different in your album . It's anise keeping up with old friends this. I hope you are having a peace fellow Christmas and a most happy new year!!!!.
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Your not alone and if you need to vent this is the place for it...You just learn to compensate for the new "US" and it's not so bad once you know where your having the most problems we just take a little longer and have to really focus and my motto is that does help "It could have been worse" and thank goodness it wasn't does help on those bad self pity days...
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:D
Hi Heather and everyone;
I had a 1.2 cm AN removed surgically in Feb 1995. Yes, 1995. I lost my hearing in my left ear and my balance nerve on the same side. Immediately after surgery, I noticed that my short term memory was not the same. I had to take detailed notes at meetings to remember the details clearly. Now, at 64 years old, I am questioning my perceived decline in short term memory loss. Example: I fully engage in a conversation with my wife about an upcoming family event on a Tuesday evening, but by Wednesday or Thursday, I don't remember it at all, until she reminds me of some of the details in our discussion. Then, I remember the details. I have recently gone to see a Neuro-psych doctor to see if my perceived change is the result of aging, the beginning of dementia, or just the same old AN post treatment effect. Does anyone else have a similar experience?
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Dear Heather, Rich D and others who have commented here,
It is quite common to have these symptoms of supposed forgetting.....In 2004, After my operation, I placed myself in Kessler Rehabilitation in NJ for 3 weeks I was seen by a Neuropsychiatric doctor and given a battery of tests they determined that I had suffered a traumatic brain injury and I received along with my therapy tools with which I am able to cope.
Some tools I still use today....and it is useful to use them....I use a calendar to mark off dates that I do not want to forget, I use my phone to list people by alphabetical order and I constantly write notes to myself that I put in my pocket, needless to say I go around all day long pulling notes out of my pockets...
I have one nagging problem though, I am so occupied by these little things that I let the big things like anniversaries, or birthdays for other people slip by!
It is very frustrating sometimes but if it doesn't make it into my calendar it's not on my radar......
The therapist said to keep lists and this is helpful....but with time you learn to adapt and if an event slips by, I always try to do better next time. I don't beat myself up about it as much as I used to.
This is the new me! Learn to cope......
Mike
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I hate the forgetfulness, even with lots of lists and calendars (I love my phone it helps so much) its difficult. For me when I'm put on the spot I cannot remember a name, even my children's at times. Or thoughts get lost so fast, I can't type fast enough to get it down before its gone.
"Traumatic brain injury", I guess that makes sense. Sorry to hear 17 years later it still bothers you.
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Hi to all, It is always comforting to hear others are also having similar problems. I now more frequently have word finding problems and problems remembering names. This happens more often at the end of my work day when my brain is tired. I was hoping this would improve over time.
karen
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I just found this site on Google and there is a lot on there about Memory Loss and anesthesia:
http://www.drweil.com/drw/u/QAA400593/Forgetful-After-Surgery.html (http://www.drweil.com/drw/u/QAA400593/Forgetful-After-Surgery.html)
Mei Mei
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Hi,
We investigated and had some thoughts about AN and postop memory loss in our ANA/NJ newsletters for Sept 2007 and Apr 2008, on line at www.ananj.org. We found little research on the subject.
d*** Barker
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Hi Friends:
Count me in on the memory-loss and of all the problems that go with the AN issue; this is one of the most frustrating that can be very embarrassing. I've become somewhat of a hermit.
Pal
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I have also issues with this and I also will "forget" the next word in a sentence. I can be talking and I can visualize the next word but it won't come out, it's like it is one part of my brain but I can't verbalize it. Very , very frustrating.
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I got on the forum today to ask this very question. I am 13 months post op and am traveling very well. I don't have to many issues at all. Just tired a lot. And my memory is getting worse and worse as time goes on. So from what I have read on this thread, I am probably doing too much and getting way to tired causing my memory lose to increase. It's going to be a battle with five kids and my support network thinning I am going to have to push on and do the best that I can.
So glad this forum is here.
Kay
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Count me in. I am now five months out and I think I am going crazy. I cannot remember movies I've seen before. I having a hard time finding words or remembering appointments. My family says I have said things I don't remember saying. I don't remember where I put things or I leave out things like the milk. The other day I left the spoon in the Mayonnaise. I am trying to laugh my way through it. ;D
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yup, memory loss........ what I was going to say here? ;D lol
I have it, I find I have to keep a list for shopping and these type of things, however in other area's I haven't any problem (at work for example I don't have an issue, can remember patient's from years ago that others cannot)
It's been a problem since the initial surgery in 1990, not getting worse not getting better
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I have some brain damage from a car accident many years ago. The very best thing for me is sleep. My memory and word retrieval are much worse when I am tired. I'm at my best with 12 hours, but can't get that on a work day, but the best I've ever felt since the accident was during hurricane Sandy when I had no electricity for a week and just went to bed when it got dark and didn't have to get up to go to work. It may not be possible to get as much sleep as you need, but try to get as much as you can.
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I have been having the same issues. I had a professor/mentor tell me the same thing about the "brain injury." He actually equated my level to that of after a stroke, only without the speaking issue (although I evidently do stumble over my words.) I honestly hadn't even noticed it until my teacher suggested it as a reason for my low test grades, which were A's and B's before my surgery. Then I realized I couldn't remember the day before, let alone my previous semester or classes. Now I have trouble remembering things a week later unless I do it day in and day out.
Anywho, I have focused my attentions by writing notes, very detailed, and by using "cozi" online to keep track of dates. It also helps because other people can log in to the account and put in dates so I don't forget to do it, and my boyfriend can put things on our shopping list, etc. there are also post it notes everywhere in my apartment. And the dashboard of my car.
I'm glad to know I'm not alone in my erratic behavior, and not losing my mind at 22.
Kristin
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I am very fortunate that I do not have issues with memory after my surgery. But several years before I did and it ended up being related to a medication I was on. I am not sure if you are taking any meds, but if you are it might be a side effect of the med, just a thought.
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Hi ,I too have short term memory loss,very tired,facial numbness and balance issues.I am scheduled for my third surgery in December and feeling overwhelmed with all the up coming appointments!I pray daily and hope for the best,this will be my third 12 hour surgery:(
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Hi Everyone,
I too have problems with memory and I am on W&W. I have felt so tired out since I discovered that I had the AN. It's been a year and as time goes on my thinking process is not as good as it once was. I have to get at least 8 hours of sleep or I can't think straight. Maybe you all need to slow down if you are able to and get more rest. I wish the best for you all.
Take care, MG
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1 month post diagnosis. On the schedule for surgery but no firm date yet. My memory is at once horrible and incredible. Lose keys, glasses etc. Have a hard time remembering things I was just told or events that recently occurred. I can remember some things that seem to stick, but the only common thread is If they interest me or not. Mental multitasking isn't a good as it should be either. Can remember song lyrics from decades ago or specifications and stats for innumerable things that don't help me in day to day life. I can't imagine it being any worse after surgery, but if it is I probably won't remember it anyway. lol
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Hello everyone, boy this thread has been really helpful to me. I am 6 weeks out of my AN Translab surgery and 3 weeks out of my second CFL surgery (went through AN incision). I am experiencing a lot of cognitive issues and was worried this may be permanent. I had 2 additional surgeries so I ended up with a total of 26 hours of anesthesia, still on steroids and still dealing with swelling issues from the CFL surgery. So... I had hoped much of this is due to all of that - plus my tumor was compressing my brain stem (moved it some too) - and that latter detail is what made me worry it may be permanent. This thread helped me...
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14 months post surgery and yes. Definitely significant loss of memory for me. The doctors position is that the tumor location of the brain has nothing to do with memory function. Your sharing provides a sense of relief to know I am not alone.
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Hi,
I also suffer from memory loss after the AN operation and my memory isn't what it used to be.
It is also taking it's toll on my work as I am a programmer and I often need to repeat tasks as I lost track of what I did the day before or sometimes a few hours before.
I still hope everything will improve and keep on doing the best I can.
Regards,
Frederic
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Hi Frederic, as a coping mechanism, consider adding a comment something like //#UTH Need to parse this string and ensure first five parameters are strings and the last two are floats. Be careful about endiness.
That way when you come back tomorrow, you know exactly what the next planned step and anything to watch out for. This is what I do. Sometimes even just before meetings. I also keep several small notepads hand to record information that I may require soon (as well as the usual one for making notes).
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I am definitely going to do that I am sure it will help!
Interruptions are the worst, when I am in the middle of something and I get interrupted I need to figure out where I left of.
Never needed to do that before the surgery, could jump right back where I left of.
Going to apply that from now on when I get interrupted too, just make a note or comment before I attend to the person interrupting me.
Thank you :)
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Hi Everyone,
My Son who is now 38yo, went through this Nightmare at age 34. He just recently regained feeling in his left hand. The left side of his face is still numb and his nose twitches. He's been SO Brave and Courageous throughout this entire time. He just told me that he's experiencing memory loss. I was wondering if any of you have been able to recover your memory after having gone through this. I am broken hearted over this. He's my only son and I love him so. I wish there were something I could do to relieve his pain in some way. Thank you for any help you may provide. I wish you ALL the Very Best Recovery.
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thank you, thank you thank you.
i am so happy and relieved I have come across this message board. I thought i was going insane.
My husband had gamma knife radiation on his acoustic neuroma about 2 yrs. ago. we noticed (the kids and I) memory loss in him and mood change. I told his doctors, but no one listened to me. he will sit and ask the same questions over and over, as if he never asked them, he can't follow a long conversation... it is very difficult. I can't have a serious conversation with him because he will forget it, he has very little short term memory. The kids will say they are going somewhere, then later he will get angry because they didn't tell him they were going (when the just said it at dinner the night before).
I am not sure what direction to go now, or quite how to help him, but at least I'm validated and I will keep looking for ways for him to improve his memory. It has been so difficult for the rest of us these past few years. I have to repeat everything.. I try to be patient. I just wait for him to remember something.. anything. or i just repeat as if it is a new conversation now. I try not to get too frustrated. but it is still difficult.
but thanks, and god bless you all in this journey...
Dana
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Find him a new doctor who deals in memory and cognitive function. Whatever the reason, you are noticing changes. I wish you all the best.
Marla B.
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I agree with MarlaB! You need to search for a memory and cognitive function specialist in your area. I would think that such a specialist would take your concerns very seriously and would test for memory loss and would recommend treatment.
Best wishes on you and your husband's journey!
Don