Thanks and new question

[Gabbie]

Hi, This is my first time as a registered user of this site, but last May when I was newly diagnosed with a 3cm AN (after a missed diagnoses three years ago) I was a frequent visitor to this site and wanted to put out a great big thanks for all of the positive stuff you folks post on this chat board. I had been to another site where there were a few people writing all of their 'war' stories and it sounded horrible. I am proud to say that my 14hr surgery in July went well and I was back to work in 6weeks. I still have a few balance issues (especially in the dark) and it will be an adventure when I get to the beach this summer, but overall I would say my recovery has been quite remarkable. This sort of leads into my question...I was wondering if anyone has had difficulties with short term memory and word searching (other than normal ageing stuff I am 38yrs old.)? I will be visiting this site more often now that the hardest times are past.

[ppearl214]

Hi Gabbie and welcome I look forward to your further participation here and even though the reason stinks that we all have to be here, I am glad we are here!

RE: your question..... there have been many threads on this site (as well as the Cyberknife Patient Support board) with many of us noting short term memory loss and other cognitive issues.  Dr's (from what I have read thus far) don't seem to see the correlation between the cognitive issues for AN patients but many patients are reporting it (myself included..... I just claim that when I forget a birthday, I have a dr's note for short term memory loss ).

If you take a little time and check some of the forums here, you will see some of the threads recently noting these issues.  I know others will chime in here as well as many of us do share the same situation as you.

Again, welcome.
Phyl

[Jim Scott]

Hi Gabbie:

Congratulations on your rapid recovery.  As another fortunate AN patient who is pretty much back to normal 10 months post-op, I share your joy and I'm pleased that you've been encouraged by the posts on this board. 

I really don't have much in the way of balance problems and whatever balance difficulties I had are disappearing.  Your apparent short-term memory loss seems to be fairly common in AN patients (whether doctors acknowledge the correlation with acoustic neuroma tumors or not).  I've experienced some short-term memory loss but I usually attribute it to my age (64) and/or sleepiness, because my memory always seems to get worse as the night wears on.  So far, it's not a major issue for me and I don't worry about it as it doesn't affect my daily life in any meaningful way.  I know there are nutritional and vitamin supplements one can buy that are supposed to help this condition but I have no idea if they are of any real value.  Others may contribute further information about that aspect of treating short-term memory loss. 

Now, 'don't be a stranger' here.   

Jim

[Katrider]

Hi Gabbie, Phyl, Jim......    I am currently undergoing treatment with the "Novalis".  I too have had issues with some short term memory loss but mostly with word searching.  People around me notice this so I know Im not crazy and Im only 43.  I havent brought this up during my meetings with y Dr.'s but now I will.  CIAO...........

[Boppie]

Gabbie,  I am 65, had translab 9 hour surgery 15 months ago.  In the beginning I had short term memory difficulties that I wanted to label as my post trauma disorder.  I had trouble remembering names, keyborad letter positions, where I put things down, reminding someone that a person phoned.  I had to do a lot of self retreading.

At 15 months out I admit that I have a diminished ability to sequence and multi-task.  My husband says I have trouble focusing and it seems to him that I just shut down at times and cop out.  He is correct.  Pre-op I was excellent at multitasking and sequencing thoughts in line.  I could write directions and teach process tasks very well.  At present I deal with this new problem by making more lists and reducing thoughts to visuals (images).  I have a new way of thinking post AN and I guess it will be with me forever as my new normal.  I think the problems I am having are not from aging.  I will not allow this to frustrate me, and perhaps this is where I show my "age".  I am more willing to let the problem flow by me.  Unlike Jim, I am still the nite owl I was pre op and keep myself busy with lots of unfinished tasks, seldom need a nap or early bed times.  I just don't stick with things ad nauseum as I once did.  This explains the stack of unfinished tasks. 

I would say at age 38 one should overcome the memory problems in time.  Perhaps I and other posters could help you if you'd pose some specific questions about the problems you are having with memory.  Many minds together can do good things.  There is a study going on about the cognitive issues AN patients have.  You are not alone.

[Pembo]

Gabbie I'm 38 and had my 4 cm tumor removed in June 2004. Short term memory and word searching is definitely a part of my life. I find that I need to write it down more often now or I will forget and there are many times when I know what I want to say but I just can't find the word OR I mix up my words. I always think of Willy Wonka when he would say "stop, reverse that".  These things either have gotten better over time or I am better at coping with them.

[er]

Hi
I'm also one that has the same problem, short-term memory and word search. And I feel like an idiot some times. I wish I could help but my doctor doesn't think it's A N related. His advised I see a neurologist.
I have an appointment on the 11th of April.
er

[Joef]

Yep... I have a highly "techie" job .. and sometines its a challage .. like right now .. I know why I'm posting this .. but for the life of me .. I have no idea what your name is  , I find myself looking at phone numbers I'm trying to dial over and over again ...
you just have to "push" yourself .. keep trying .. it does get better a little over time ..

[Omaschwannoma]

Me too!  Same as all of you!  It truly is a challenge to teach yoga, remembering all the benefits and contraindications of each posture (I admit I fail a little), on top of that I am challenged to remember the names of the muscle group being used, which ones you relax, which ones you engage and oh yes, don't forget to breathe!  All the while I must think one step ahead for the next posture...whew!  I am exhausted most times after one and half hours, can never remember new students names or even my regular ones.  Takes multiple times of asking them over and over.  They are so understanding.  I frequently found myself shortly after surgery, asking my husband, "did I just ask you this?  Did you just tell me that?"  It really doesn't help validate our findings/feelings when doctors say this cannot be caused by the AN treatment. 

[Obita]

Hi Gabbie and welcome!!

I too, have some problems with finding things when they are right in front of me.  On my drop down favorites I know where everything is:  bank, credit cards this forum etc....most of them have been in the same spot for years but I cannot see them all the time.  The other problem I have is numbers.  I work in a lighting showroom and I need to look up prices all day.  Our price lists are in big stand up binders.  Everything is numerical so finding a 6002-45 within a thousand numbers should be easy.  Right after the 6001-45 and before the 6003-45, RIGHT? Sometimes WRONG!!  It will be right there and I don't see it.  Then I get flustered and get a hot flash.  Then I try again and find it right away.  SHHHHH.  No one at work knows I have this little problem.  Just between us ANers, OK??

Short term memory, same thing.  I don't trust myself to do anything later at work.  I keep a legal pad on my desk with do laters and only cross them off when I know I did do them.  Another little secret. 

Good luck with the sand on the beach.  Some people have no trouble at all.  I do have trouble on uneven surfaces like rocks but nothing like my first year post op.  The walking in the dark never got better for me.  I now have a night light at age 53 and I like it.  No more bruises from walking into the doorframe. 

It sounds like your recovery is completely normal, actually on the good side of normal.  Good for you. Keep your brain working hard and rest it when it needs it. 

All of the above stuff was so much worse the first 6 months post op and it all got better (except walking in the dark) by the 1 year mark.  Now, it is just a little bothersome.

See you around, Kathy

[Windsong]

Memory? I've been known to look for my shoes lately, not "see them" (even though they might be right there in the foyer), then spend half an hour looking everywhere, only to come back to the foyer and lo and behold there they are 

That's one example of memory for me. Weird that, not "seeing" things....

W.

[Jackie]

Geeze, I am in the watch and wait mode and I have a lot of the memory issues you've been discussing! I have had NO treatment, so is it age, or that by multi-tasking for so long, I am just not able to do or remember all the things I used to??? I am nearing the big 6o in August. My AN was just diagnosed 2/6/07, and just over a cm.

[Gabbie]

 :DThanks again everyone! I had a lot of people, my neurologist included tell me that everyone forgets names sometimes. But it is not just forgetting someone's name it is a whole slew of things and they are usually things that should come easily like a word in the middle of a sentence. If that word is a noun I can actually picture the object, person or place but can not seem to get my mind to actually visualize the word and have it then come out of my mouth. Like you all indicated when I mentioned it to my doctor he said it was definately not related to the surgery or to the AN. I am so glad I am not the only one who has been told this and yet won't take just the medical world's word on it! By the way I failed to mention in my last entry that I am a nurse....Not exactly a job you want to be forgetting things. So far no one at work has noticed and I do think there must be some way to re-route the synapses when this happens, just have to figure out how!
Gabbie

[MLB57]

Hi Gabbie and everyone!

I was 50 when I had a 1 cm rt AN removed Jan 2001 retrosigmoid suboccipital--during this surgery approach the Neurosurgeon "retracts" the cerebellum, in other words, moves the brain over a bit to get to the AN area. I had no post-ops complications except the fatigue kept me from returning to work for over 3 months. I worked as a CSR in printing working for the job sales rep and it was a very stressful/deadline-oriented/everything must be 100% perfect I want it yesterday job and altho I'd been getting to the burnt out point anyway I found after I was laid off (unrelated to my AN) I decided to change careers as just the thought of deadlines just stressed me out. I have a job I absolutely love now. So I don't know if i was just at that burnt-out stage or not, but since AN surgery I can't and don't want to deal with stress!!! My balance is fine--strange thing is if I get up from a seated position or generally move too quickly it seems my brain can't get in gear quick enough, whereas  I love to fast dance and you'd never know I had a balance issue... But I'm sure the sandy beach would have me stumbling and swaying..Regarding short-term memory, after I got away from that stressful job environment I found I functioned overall much better--so stress can do a number on memory!! But I have to admit I do have short-term memory episodes--strange as sometmes I can remember the most insignificant things and other times I forget where I left my glasses 5 mins ago!!  Age or AN? Maybe little of both!! Another thing, I never had blood pressure issues but during and after surgery my BP was elevated and I am on NOrvasc now.. Only med  I take, however..

Take care and you have many fellow travellers  on your AN recovery journey who will be glad to hear from you and pass along our stories!!   Regards, Ma60ry for MA

[Pembo]

Sounds like we have another post-op lingering side effect that the drs won't admit to....