ANA Discussion Forum
Post-Treatment => Cognitive/Emotional Issues => Topic started by: phx on October 06, 2010, 08:26:31 pm
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I was diagnosed with an acoustic neuroma during my 1st semester in grad school, ended up taking my 2nd semester off, and returned this semester. I've always loved learning, but it's finally hit me that learning may not be the way it was for me 3 years ago. My tumor is in the left side of my brain which supposedly controls speech. I'm wondering if that has anything to do with my speech problems. I speak two languages and english is my second language. I've brought it up at doctors visits, but it doesn't seem like it matters. I guess I want someone to tell me that "yes", it's possible that the tumor might have changed the way you talk. I think it's because I speak 2 languages and people just assume that I don't know my english that well. I know what I'm thinking, but sometimes to just say it out loud is difficult. I don't want to feel like I'm making excuses because I'm really not, but I need to know so that I can learn what I need to do to live with it. I feel like when people ignore what I say about my speech problems, that the problem is in my head and it's not real. It is real to me. I'm stressed because I don't know what to tell Professors and classmates. My first semester of grad school was hard because I was diagnosed. I was all excited and happy to return to find out that I'll never be the same. It's sad. Just thinking about it brings me to tears. Plus, my MRI and follow-up appointment is coming soon. Just needed to vent a little. I can see what people think about me when I talk. I sound and look unintelligent because of the way I express myself. What can I do? I don't like feeling this way and I just wish I can be "normal", but I know that's never going to happen. Does that mean I should give up school? It's always been a dream of mine to finish because it's what I want to do. How can I overcome this? Thanks!
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Hi phx ......
You are not dumb ...... the writing in all of your posts is excellent! You obviously are a very intelligent person with much to offer this world.
I am a bit confused as to whether your tumor ended up being a meningioma or a schwannoma. Although I am not a doctor, from my research and my own experience, normally an acoustic neuroma (vestibular schwannoma) does not affect the speech center in the brain. You did have a large tumor so it could have grown in an unusual way. You should certainly ask your doctor to show you on an MRI image or draw you a picture of exactly where your tumor was (or is). Meningiomas, on the other hand, can grow and press on the area of the speech/language part of the brain.
Yes, you may never be the same as before but many people on this forum can testify to their lives after an acoustic neuroma being equally rewarding and fulfilling, just in a different way. Try to focus on what you can still do, not what you cannot. This may be the opportunity to pursue all kinds of things you never thought you would ..... one of those turning points in life ..... not a turnaround.
You should not have to give up school but what you pursue and how fast you try to do it may need to be changed.
Many thoughts and prayers that you will find a new direction that will bring you peace and fulfillment.
Clarice
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phx~
I am so sorry that this is happening to you! I know exactly how that feels. Are you going into a field where you will be doing speaking (public) like law or teaching? I think that it gets easier over time...I don't know if that is because as you age you realize who is REALLY important to your life or it just becomes easier to flat out say, "I had a brain tumor & sometimes I get my words mixed up or the right word doesn't come to me as quickly." For me, the more tired or stressed I am plays a HUGE role in my speech - & I can only imagine that grad school would put you in a constant state of both. Cut yourself a little slack, you are MUCH harder on yourself!!
K ;D
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So sorry to hear of your angst concerning your speech.
good suggestion from Kaybo, and like Clarice said you are not dumb.
Don't know if a speech therapist would be in order here, or just an evaluation, to get you back on track and help gain your confidence back?
Hang in there.. You have had surgery AND CK so you are still healing.
Maureen
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Phx,
I'm sorry you feel this way, but you are not alone. I have a tough time recalling words sometimes and find myself using a lot of fillers, especially when I'm stressed or tired. Try to give yourself some slack, but remember to stay positive and do not quit school. I finished my MBA after my AN surgery and it was tough to say the least, but I just made it known to the faculty and they all seemed to understand. In fact a professor allowed me to take a full section of a class because it was earlier in the evening and he knew I would do better the earlier in the day. I was somewhat self concious, but just try not to fixate on it.
hang in there and don't give up!
Liz
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For the sake of this posting, I'm going to assume you're a man. Dude, relax! ;D Four weeks after having my Golf Ball Sized Brain Booger removed I was back at my desk and, during that first week back closed more than 100K in new business (only out for four weeks). I sounded like I'd just left the Dentist, still num from the Novocain. I was easily able to make my point (cognitive ability unhampered). Was easily understood and, above all, welcomed back by all with a fervor I hadn't expected.
For what its worth, I also speak two languages. English is my first and Japanese my second. I still get back handed compliments from our Japanese clients that I sound like an Osaka Cab Driver...mouth full of marbles and all!
You'll be fine...time heals just about everything us ANer's have to deal with!
Take Care and Study Hard!
;)
Doc
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Phx ~
I'm sorry to learn about your speech problems, which are clearly distressing you. I can understand your anxiety over this situation and I hope you'll find the courage to fight back and surmount this challenge. I'm not a doctor and have no idea if your debulked/radiated AN is the cause of your speech difficulties. However, I would suggest consulting a speech/language pathologist who may be able to help you. Dropping out of grad school should not be an option at this point. You've come too far to simply give up on your educational goal. We 're all acutely aware of how we appear to others and your feelings of inadequacy in regard to your speaking English - your second language - are real and need to be dealt with, not succumbed to as something intractable. You certainly aren't 'dumb' and with some effort and determination (and possible professional help - a speech/language pathologist) you'll be able to speak as well as you once did. Don't allow yourself to be a victim and never downgrade your own sense of worth based on one perceived 'flaw'. Many post-op AN patients deal with problems including facial paralysis and severe headaches, but they fight back and eventually overcome their deficits. You can too. We're here to support you so let us know how you're doing. Thanks.
Jim
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Phx, I'm not clear on what you are describing as the problem - is it the mechanics of speech or the ability to articulate your thoughts?
I have trouble with the mechanics of speech, While it gives me more time to think and organize my thoughts, it is very difficult to get the words out at times. Sometimes, I have trouble following things.
The good news is that I work in higher education (at the state level, not on a campus) and colleagues, including those I have just met, are amazingly tolerant and patient the great majority of time. Most of the times in higher ed, people recognize that we go through different phases and challenges in life.
Now, you may find that things have changed for you. Let me suggest that if anything has changed, it is most likely NOT your ability to learn, but rather your most successful style of learning has changed. And you may not have found the new style that works best for you yet. Give yourself time and realize also that you have been away from school for awhile...it may simply be that you need time to re-acclimate.
In short, don't give up school...the semester isn't even half over yet.
-Tod
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Hi.
Maybe its a concentration issue. Your brain is working overtime adjusting to your new self. I read somewhere that most of our perception is subconcious (hearing, seeing, balance). Now you have to percieve in a concious process. That is slower and harder to do.
I hope your problems will ease as times go by.
Best regards, Kenneth
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phx - are you on any medications? I was on Tegretol when my hemifacial spasms were at their worst, and it caused me to forget words all the time. I would literally stop mid-sentence trying to figure out what I wanted to say. Whenever I mentioned this to family, friends, even my neurologist, they would say, "Oh, don't worry. It's just getting older. Happens to me all the time."
Uh, no. Once I had my surgery and dropped the Tegretol, my speech returned to normal.
Anyway, if you are on medications, look into them. And certainly I believe that your tumor could have something to do with it as well.
Best wishes,
Sara
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Thanks everyone for the support and encouragement. I think my concentration and the way I process words are a little off now because I've lost the hearing in my left side. Everythings been removed, so the ear is what the audiologist calls a "dead" ear. I was talking to someone and she said having my hearing all gone from the one ear might be causing me to process things differently. I explained to her how someone would be talking to me and I'd still be processing 2 sentences back while they're 2 sentences ahead. I've got a doctor's appointment and I'm definitely going to ask questions. I feel like I still don't know all the changes that are occuring in my body and I guess this makes me uncomfortable. I've been feeling tired lately and I'm not sure what that is. Might be stress.
Thanks again. This forum is wonderful!
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phx .....
The brain has an amazing capability of reassigning tasks when there is an injury or surgical insult. It just takes a while to make the necessary changes to accommodate for the loss of function in a certain area.
Pre-surgery I had "perfect pitch" in that I could hum any note requested or identify the pitch of any sound. I lost 80% of the hearing in my AN ear but still retain 100% speech discrimination. Shortly after surgery, my doctor picked up the telephone in my hospital room, put it to my good ear and asked if I could hear the dial tone. Of course I could. Then he put it to my AN ear and asked the same thing. I said yes. He was ecstatic. What I did not explain to him at the time was that although I could hear it softly, it was about a quarter tone higher in pitch than my normal ear. This meant that everything in the musical world sounded terribly out of tune. I was devastated as this was not only my profession but my enjoyment, as well. It took months, but my brain finally adjusted and I no longer register the out of tune sounds. When I listen to the dial tone with each ear, the pitch is still different. My brain has just learned to process the input information differently. I apparently have lost the perfect pitch in the process, but that is a minor inconvenience in the grand scheme of things.
I hope something of that made sense in that you will eventually learn to process speech with your new inputs. I did not take time to look back at your previous posts, but are you considering a BAHA? That may help with the brain rearranging input.
Best thoughts and let us know what the doctor says.
Clarice
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Hi Clarice,
I talked to my doctor about BAHA. He wasn't sure that would do much for me. Something about how the all sounds would be rerouted to my good ear. My good ear is still working great, so the doctor says there may not be much of a difference. Truly, I think because I only have one good ear now, all that noise can be distracting. All I know for now is, I got to take care of my good ear. Thanks for the suggestion.
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phx~
I don't totally understand EVERYTHING that there is to a BAHA but I thought that that was excactly what you wanted - one ear that DOESN'T work (SSD) and one that DOES!!! I am not a good candidate because I have gone so long (almost 15 years) & so my brain has compesated. BAHA's were not around then so I went for many years without a good substitute and so I guess my brain retrained itself. I can't see how it WOULDN'T help you...
K ;D
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I should have the doctor explain so I understand it better. They way they said it to me was the I was already hearing everything with my good ear and there was no sense in putting one in. Does that have something to do with the cochlear? When he explained it, it made sense to me. It might just be me explaining it.
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Hi Kaybo,
My left ear has no more hearing, but my right still does. I would like hearing in both ears because then I know where noise is coming from and my head doesn't feel overloaded. Everything was removed from surgery. Something about everything being removed and my right ear still working well. Thanks for the help.
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phx,
After my surgery which wasn't even a month ago. I would say my mind works fine as far as speech goes. I would say that the stress and worry is on high overload. And that's whats making my mind weaker. I was told my speech and swallowing would be affected because of nerves being pressed on. But I never noticed it.
I been having huge problems in crowds. A person will be right next to my good ear and I still can't filter the background crowd out correctly. Really sucks and makes me have to work really hard to get along.
P.S. Your not dumb. Not even close.
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phx .....
I keep hoping Jan will chime in here ..... she is our resident BAHA expert. My very limited understanding is that a BAHA is only valuable if one is SSD. Somehow the use of it does give directionality. Perhaps your situation is different ..... Jan should know the answer.
Clarice
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From what I understand, it doesn't give 100% directionality but can certainly help a little....mainly the hearing from that side...
K ;D
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phx .....
My very limited understanding is that a BAHA is only valuable if one is SSD. Somehow the use of it does give directionality.
Clarice
BAHAs were actually developed for people who, for various reasons, are unable to wear a traditional hearing aid (due to malformation or a variety of ear "conditions"). In these cases, the BAHA is worn instead of a traditional hearing aid, but it provides a similar function. The BAHA sends sounds to the ear on that side of the head. If they have a BAHA on the left side of their head, it's actually assisting the hearing in their left ear. If they wear two BAHAs, which is actually fairly common, the left-sided BAHA is assisting the left-sided ear, and the right-sided BAHA is assisting the right-sided ear.
It wasn't until some time after the development of the BAHA that it was determined that the BAHA could help single-sided deaf individuals. In those instances, there's just one functioning ear, so the BAHA is placed on the non-functioning ear's side of the head and the sound is transmitted, via bone conduction, to the functioning ear on the other side of the head.
With regard to the issue of directionality, I attended an ANA/NJ seminar a couple of years ago at which a doctor who implants BAHAs spoke. He said that he always makes sure that his SSD patients understand two things before he implants a BAHA: (1) the BAHA will not not affect their degree of tinnitus -- it will neither make it better nor make it worse; and (2) the BAHA will not restore their ability to determine directionality. His theory is that shortly after becoming SSD (I believe he said it was a matter of a few weeks) the brain permanently loses its ability to distinguish directionality. I know that there are some BAHA-wearing folks on this forum who feel that they have regained directionality, so this theory may not hold true in every case. I suppose the assumption could be made that BAHA users who are not SSD do have a sense of directionality because their brain never lost that capability.
I think the important thing for us to remember is that not every BAHA user is SSD and the functionality of the BAHA differs depending on the user's condition.
Catherine (JerseyGirl 2)
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Catherine .....
Thanks for clearing up some misinformation I had regarding BAHAs. My real concern was whether phx had accurate understanding from her doctor regarding the possibility of being a BAHA wearer successfully or not.
Hearing is a complicated process from the input of sound to the perception by the brain. I think there is much that is unknown from individual to individual.
Clarice
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I am not a good candidate because I have gone so long (almost 15 years) & so my brain has compesated. BAHA's were not around then so I went for many years without a good substitute and so I guess my brain retrained itself.
K ;D
K,
Could you go into a little more detail on how your doctor arrived at the conclusion you weren't a good BAHA candidate? Was it strictly based on the length of time you've been SSD? If so, did he/she mention what he/she considers to be the maximum length of time one can be SSD and still benefit from the BAHA? Did you have any hearing testing done that led to this conclusion?
Thanks for any information you can share about this.
Catherine (JerseyGirl 2)
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The BAHA will not be a big help with directionality. There are some people who can notice a difference in the way something sounds and determine that it's coming from their deaf side, but not everyone. I can sometimes, but it's not something I can rely on, and I still have to do the turning around routine to figure out where the sound is coming from.
I love my BAHA, but you have to remember that it has its limitations and it's not ever going to be like your normal hearing. As long as you keep your expectations realistic, I don't think you'll be disappointed.
Lori
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Catherine~
I have been to 2 Dr's (complete with hearing tests done by audiologist) and also tried a BAHA demo at the Symposium in Chicago. I never had what I call the AHA - BAHA moment. The last audiologist was the best in explaining and working with me. When she was putting the demo on my head, she was talking on my deaf side, then she said, "Oh sorry - I need to repeat that for you" - she was completely by my ear, not talking loudly nor could I see her and I heard EVERY word! Obviously, I would not have heard her if she were WHISPERING in my ear but I have compensated enough that, even though I still have very poor hearing overall, a BAHA would not help me enough to be worth it. I had really high hopes after moving to Houston and seeing the docs here but they concur with everyone else!
K :-\
BAHA-less in Houston...
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Can someone tell me what "SSD" stands for? Thanks. I had a hearing test done and the audiologist said something about how if hearing in both ears weren't that good, a BAHA would be good. Even though I have zero hearing in my left ear now, my right ear is working at 100%. I will have problems with determining noise direction, but if my hearing is still good and I can still hear, would a BAHA be good? I just have trouble hearing when there lots of noises going at the same time.
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phx, SSD = single side deafness.
According to the Cochlear web site, "the Baha System is designed to treat conductive and mixed hearing loss, and single sided deafness." That sounds like you.
Go to http://products.cochlearamericas.com/baha and poke around. Also check out some of the threads in the "Hearing Issues" forum here.
Best wishes,
Sara
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Sorry I'm late to the party - work and parenting obligations prevented me from getting here any sooner. Okay, and I confess I haven't run since Monday so I stopped at the gym, also. I'm doing the HLAA Chicago Walk4Hearing tomorrow morning and my knees needed some "prepping". (Nothing like getting old :P :D )
phx -
I am SSD in my left (AN) ear and have 100% hearing in my right and I have a BAHA. It works tremendously for me. Catherine (jerseygirl 2) explained a lot of the "mechanics" of the BAHA.
I don't know why your doctor thinks a BAHA isn't for you - it certainly sounds to me like you're a candidate. Perhaps he's a doc who doesn't think BAHAs are "worth it" - but unless he personally has one, that's not a fair opinion.
Where are you located? I might be able to suggest a doc you can consult with who thinks BAHAs are great.
I was sold on the BAHA as soon as I tried the demo (4 months after my AN surgery) and I haven't been disappointed at all in it's performance. I spent 9 miserable, depressing months before I had the implant. The BAHA will never replace my "normal" hearing - that's gone for good - but IMO it's the next best thing.
As far as the question of directionality goes, I am one who feels I have gained some over the 2 1/2+ years I've worn a BAHA.
Last month I participated in a research study that my neurotologist and another doctor in his practice are conducting to see if BAHA wearers who have worn one for over 2 years actually have gained directionality. I'm not sure when the results will be published, but I'm very anxious to see what the outcome is.
As far as mixing up your words goes and it being related to your hearing, I personally don't think it is. I've had the mixing up words issue since my AN surgery - over 3 years ago. The BAHA hasn't even made a dent in that issue.
Jan
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I want to jump in here too. I am one of those people who had SSD for almost 12 years before finally going to the neurotologist about a BAHA. He did tell me that the longer a person has had SSD, they tend to accommodate to that mode and the BAHA MIGHT not be as effective. I tried a couple of demos, on softbands, for 5 days at a time. I really did hear a difference. Now that it is implanted, it is even better than the demo. Everyone is different, but it's worth trying the demo
Kaybo, if the demo made a difference for you, why would you think you are not a candidate? I was told that however good the demo was, the real thing would be about 20% better. Actually, it has turned out to be more than 20% for me. I think the fact that I was not expecting to have normal hearing restored made a big difference. I'm still new to this, but I'm happy!
~Dale
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Dale~
It sure is good to hear from someone who had a hearing loss for years instead of months...I guess I wasn't clear - the demos made NO difference for me. The Dr (here) did say that we could schedule a time and come back and wear it around the hospital and to lunch (there) & see what I thought. With the move, we just haven't had time to do that, but would like to...
K ;D
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Dale and Kaybo,
This is an interesting discussion.
K, what sort of "spin" did the audiologists and doctors put on their decisions that you were not a good BAHA candidate? Did they say that since your brain has compensated over the past 15 years that you can hear as well as a BAHA user? Maybe the only thing that a BAHA user can hear that you can't is someone whispering on their deaf side (the whispering would be picked up by their sound processor). You indicated that you didn't need to turn in order to hear the audiologist on your deaf side -- is this generally the case (i.e., you can follow conversations in a group without having to turn to face the speaker)?
Dale, do you have 100% hearing in your good ear? The newest BAHA model -- which you have -- can be programmed to compensate for very mild hearing loss in the good ear. I'm wondering if that fact has contributed to the crisper sound which you can now hear? When the new BAHA was introduced, I had e-mailed my House Ear Clinic audiologist to see if perhaps that model could replace my Intenso ... but no such luck. I was told I would need to wait for the enhanced Intenso model, which hopefully will be introduced before too long.
Catherine (JerseyGirl 2)
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K,
See if your doc will let you keep the BAHA for more than just a day. It made a difference to see how it was in different environments. Also, if you can get it on a soft band, (basically a velcro closure headband) it's much more comfortable than the hard band they use in the office. If you heard something on your deaf side, then it must have picked up something.
Catherine,
I do have normal hearing on my left side. Probably just some typical age related decrease, but essentially 100% normal. If not for my SSD, I would need nothing at all on that other side.
The Intenso and the Baha 3 are two different animals. They are generally not interchangeable. The Intenso is more for the moderate to severe loss on the good side with SSD on the other side.
~Dale
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The Intenso and the Baha 3 are two different animals. They are generally not interchangeable. The Intenso is more for the moderate to severe loss on the good side with SSD on the other side.
~Dale
Yes, you're absolutely correct on this.
Catherine (JerseyGirl 2)
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Dale~
I heard everything BEFORE she put on the demo and no difference after it was on...
I specifically asked him if I could take it home and he said no! :(
K ;D
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I heard everything BEFORE she put on the demo and no difference after it was on...
I specifically asked him if I could take it home and he said no! :(
Kay,
Does this mean that your doctor and/or audiologist feel as though your brain has compensated to the point that you can hear as well as you could even if you were using a BAHA? You had mentioned in a previous post that you could easily hear the audiologist speak to you on your deaf side without needing to turn in her direction.
Catherine
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Basically...YES - that is not to say that it is like it was BEFORE I became SSD but enough that I hear everything but a whisper in that ear...I still miss a LOT but I think I would with a BAHA too - especially the directionality. We are not giving up yet, but it is not a cut & dry "get it"...
K ;D
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K,
I hope that things will work out well for you and that you and your doctors reach a decision re: BAHA with which you'll be satisfied. You're certainly a trouper and I'm betting that you'll be just fine whether you end up with a BAHA or not!!! As you know, directionality isn't necessarily a given with BAHAs, and the degree to which BAHA users feel they function comfortably in crowded, noisy situations seems to vary a lot. It sounds as though you've adapted really well over the years to your SSD.
Catherine (JerseyGirl 2)
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I'm sorry to hear about your speech problems also. I was a software developer and analyst prior to my surgery. I'm currently unable to work and am not sure if I will ever be able to go back to what I was doing. My brain simply doesn't process the way it used to. Where I used to excel at math, spelling, logic, etc., I now struggle at times to spell simple words and do basic math calculations. It's not a constant thing, but rather sporadic. It's very frustrating when I used to be able to do complicated calculations in the insurance industry and now, I struggle to add 2 single digit numbers. The same with spelling...I never used to misspell words and now, I'll try two or three times to spell a common word and finally give up. Later, I can spell it perfectly. Thank God for spell check...lol
I agree that you should see a speech therapist if it's an actual speech problem. If it's simply that your brain isn't always putting the words together in the right manner, then a simple statement explaining it to whomever your speaking will help you to relax.
You didn't say, but do you do it in both languages or only in one? If one, which? Your primary or secondary?
Pat
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I'm sorry to hear about your speech problems also. I was a software developer and analyst prior to my surgery. I'm currently unable to work and am not sure if I will ever be able to go back to what I was doing. My brain simply doesn't process the way it used to. Where I used to excel at math, spelling, logic, etc., I now struggle at times to spell simple words and do basic math calculations. It's not a constant thing, but rather sporadic. It's very frustrating when I used to be able to do complicated calculations in the insurance industry and now, I struggle to add 2 single digit numbers. The same with spelling...I never used to misspell words and now, I'll try two or three times to spell a common word and finally give up. Later, I can spell it perfectly. Thank God for spell check...lol
I agree that you should see a speech therapist if it's an actual speech problem. If it's simply that your brain isn't always putting the words together in the right manner, then a simple statement explaining it to whomever your speaking will help you to relax.
You didn't say, but do you do it in both languages or only in one? If one, which? Your primary or secondary?
Pat
Pat thank you so much for saying exactly how I have been for a year this forum is so wonderful to know that others sadly to say are having the same problems.. At first I thought it was all in my head and this isn't happening how could I go from one extreme to the other and I have to just start getting use to the new me and hoping that maybe this is just temporary..
Best Wishes,
Pat
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I'm kind of late to the party here, and mostly read the first page of replies so sorry if my response isn't in line with the current conversation.
Anyway, I just wanted to say I'm sorry you're having these problems and I hope you won't let them stand in the way of achieving what you want to achieve!
I remember starting to have a problem like you describe (being "behind in processing" while someone is talking) when I was about 15, and having it get worse in college and especially after college when I was just starting as a nurse. My tumor was diagnosed when I was 23. After surgery I felt I had a lot of problems cognitively but that no one wanted to believe me, especially the surgeon. (You know, since the tumor wasn't in 'cognitive' areas of the brain it couldn't possibly be affected and all that. Which I think is a bunch of crap.) The person who did believe me was my physical therapist who saw me three times a week, and she referred me to a speech language pathologist, who did an executive functioning test and found I did have some deficits, especially in attention. I felt like this proved that it wasn't really all 'in my head', so to speak, as some people made me feel, but that there might be a real issue to work on. After about a month of really working on puzzles and different cognitive tasks (I used the website lumosity.com) I had the testing re-done and my scores were a lot better - but most importantly I felt much more "with it". I
I tell you all this mostly to say it is possible that the tumor has had a cognitive effect on you, but there are things you can do to help yourself! Maybe it would be worth it to try to be seen by a speech language pathologist. Maybe they can help you figure out where the 'processing delay' is coming from and suggest how to improve it?
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I do it with both languages, although, I think it's more noticeable with my native language. English is my second language so most people probably think I'm stumbling because I'm not as fluent in it. I talked to my doctor and he didn't say much. He said the tumor shouldn't be affecting my speech because it's on the left side, so I don't know. I know that I'm not the way I used to be, but it's hard to prove that unless they can see what I'm talking about. Thanks for sharing.
I'm sorry to hear about your speech problems also. I was a software developer and analyst prior to my surgery. I'm currently unable to work and am not sure if I will ever be able to go back to what I was doing. My brain simply doesn't process the way it used to. Where I used to excel at math, spelling, logic, etc., I now struggle at times to spell simple words and do basic math calculations. It's not a constant thing, but rather sporadic. It's very frustrating when I used to be able to do complicated calculations in the insurance industry and now, I struggle to add 2 single digit numbers. The same with spelling...I never used to misspell words and now, I'll try two or three times to spell a common word and finally give up. Later, I can spell it perfectly. Thank God for spell check...lol
I agree that you should see a speech therapist if it's an actual speech problem. If it's simply that your brain isn't always putting the words together in the right manner, then a simple statement explaining it to whomever your speaking will help you to relax.
You didn't say, but do you do it in both languages or only in one? If one, which? Your primary or secondary?
Pat
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Thanks! That's exactly how I felt with my doctors. After talking to them, I felt like everything was in my head. Thanks for sharing. I will look into seeing a speech pathologist. Yea, I've always wondered how a tumor in the brain can't affect a person cognitively. It sounds kind of funny. These tumors are slow growing and can happen for years, meaning the changes slowly happen, so it's not as noticeable. Unless a person's known me for more than 20 years, they wouldn't know the difference at all. They'd think I've always been like that. Some people I talk to, I get the impression that they feel I was like this before I had the tumor, which I don't agree with.
I'm kind of late to the party here, and mostly read the first page of replies so sorry if my response isn't in line with the current conversation.
Anyway, I just wanted to say I'm sorry you're having these problems and I hope you won't let them stand in the way of achieving what you want to achieve!
I remember starting to have a problem like you describe (being "behind in processing" while someone is talking) when I was about 15, and having it get worse in college and especially after college when I was just starting as a nurse. My tumor was diagnosed when I was 23. After surgery I felt I had a lot of problems cognitively but that no one wanted to believe me, especially the surgeon. (You know, since the tumor wasn't in 'cognitive' areas of the brain it couldn't possibly be affected and all that. Which I think is a bunch of crap.) The person who did believe me was my physical therapist who saw me three times a week, and she referred me to a speech language pathologist, who did an executive functioning test and found I did have some deficits, especially in attention. I felt like this proved that it wasn't really all 'in my head', so to speak, as some people made me feel, but that there might be a real issue to work on. After about a month of really working on puzzles and different cognitive tasks (I used the website lumosity.com) I had the testing re-done and my scores were a lot better - but most importantly I felt much more "with it". I
I tell you all this mostly to say it is possible that the tumor has had a cognitive effect on you, but there are things you can do to help yourself! Maybe it would be worth it to try to be seen by a speech language pathologist. Maybe they can help you figure out where the 'processing delay' is coming from and suggest how to improve it?
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Hi Phx,
I just finished my Cyberknife experience today. It took only three days and the whole process I thought went very smoothly. I got to take the mask home too which is pretty neat lookin thing. I remember speaking with the Doctor today and she told me to watch out for any cognitive issues which may arise over time due to possible swelling resulting in an increase in steriod medication. Please don't take this the wrong way but as many of us AN'ers know or have learned not to take anything for granted and I hope I'm not scaring you but would hate to not bring up this possibility to your attention.
Joseph
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Hey PHX,
Don't you dare drop out of school or I will personally hunt you down and kick your ass!! The world needs more educated people, especially bilingual ones. I dropped out of school at age 19 and went back at 40 and graduated summa cum laude. I participated in a work-study program for students with learning disabilities--I tutored, and did tape transcripts of textbooks. You may now have a slight, temporary LD , because we do regain lost cognitive function as we heal over time. If I were in your shoes I would definitely look into the Baha as you will be in a classroom situation which could be difficult with SSD. There may even be a government program out there to help you pay for it, or you could incorporate it into a student loan. I would start with the Learning Disabilities program at your college.
Don't make me come find you!
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate-4.gif)
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Hi PHX;
You wrote: "I sound and look unintelligent because of the way I express myself. What can I do? I don't like feeling this way and I just wish I can be "normal", but I know that's never going to happen. Does that mean I should give up school? It's always been a dream of mine to finish because it's what I want to do. How can I overcome this? Thanks!"
Seems you're being a little hard on yourself. What's your GPA? You must have a fairly large AN to affect you cognitively w/o Tx.
Stay with it, please! Use the language which works best. If the school is English speaking, your English is primary ( to others ; ), and re, your second language most wouldn't notice a difference if they don't know the language. How does one "look unintelligent"?
I completed 3 more years and 2 summers of Grad school with an NF-2 Dx. GPA: 3.45. It was not easy at all with chronic motion ( oscillopsia ) and loosing my hearing gradually.
Not sure what the plan is for your tumor...
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Thanks for the encouragement. I will not be dropping out. I've worked too hard. Half the semester is over and I think I'm getting used to things. It's not the best, but it definitely is better.
Hey PHX,
Don't you dare drop out of school or I will personally hunt you down and kick your ass!! The world needs more educated people, especially bilingual ones. I dropped out of school at age 19 and went back at 40 and graduated summa cum laude. I participated in a work-study program for students with learning disabilities--I tutored, and did tape transcripts of textbooks. You may now have a slight, temporary LD , because we do regain lost cognitive function as we heal over time. If I were in your shoes I would definitely look into the Baha as you will be in a classroom situation which could be difficult with SSD. There may even be a government program out there to help you pay for it, or you could incorporate it into a student loan. I would start with the Learning Disabilities program at your college.
Don't make me come find you!
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate-4.gif)
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My original tumor was about 4 cm x 3cm. It's 15% less than that now. How I understood it was that most of what was taken out, was from my left ear, which has no more hearing in it. What is "Tx"?
It's not just my language that I don't speak well, I do it with English too. I think it's just how I process things because I do it with both languages. I do great expressing myself with my sentences half in English and half in my 1st langauge. I can talk, but I think most people who talk to me would say that I sound confused, or that my words seem out of order. I've been in situations where I've felt like people are surprised I'm even in Grad school, but of course they didn't know me before my tumor. This is the reason for me saying I don't look "intelligent" enough.
It's my second year in grad school, but only my 2nd semester. I'm loving all my classes though. I'm getting used to not having hearing in my left ear and I still have balance problems. I know it'll take time. So far, my GPAs good. My 1st semester in grad school, I was diagnosed with my tumor and I was a wreck by the end of it. Professors and classmates who knew my situation were understanding. I was given a choice of taking Incompletes for my classes, but I did everything I needed to because I had intentions of returning. My GPA then was at least a 3.5, if not better. So far I'm doing good in my classes right now. I don't do as well talking as I do writing. My points are more clear in writing even though it isn't one of my strong points either, but I'd rather write than talk now.
My plan for now is to wait and get another MRI in 6 months. I had radiation done in August and an MRI in October. Doctor said no noticeable changes yet, so I'm hoping there will be good news when I see him again. For now, I'm going to say that I know there will be good news! (self fulfilling prophecy- you gotta believe it for it to happen)
Thanks!
Phx
Hi PHX;
You wrote: "I sound and look unintelligent because of the way I express myself. What can I do? I don't like feeling this way and I just wish I can be "normal", but I know that's never going to happen. Does that mean I should give up school? It's always been a dream of mine to finish because it's what I want to do. How can I overcome this? Thanks!"
Seems you're being a little hard on yourself. What's your GPA? You must have a fairly large AN to affect you cognitively w/o Tx.
Stay with it, please! Use the language which works best. If the school is English speaking, your English is primary ( to others ; ), and re, your second language most wouldn't notice a difference if they don't know the language. How does one "look unintelligent"?
I completed 3 more years and 2 summers of Grad school with an NF-2 Dx. GPA: 3.45. It was not easy at all with chronic motion ( oscillopsia ) and loosing my hearing gradually.
Not sure what the plan is for your tumor...
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just curious - what is your 1st language?
K ???
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Please look over this article. Our systems are wonderfully complex and one thing depends on another thing and that depends on this and that and the other!! Possibly the problems you may be experiencing have nothing to do with hearing, but balance. This is an interesting read and you might find it enlightening. I'm sorry you are having problems. I hope this all diminishes over time. I bet it will. :)
Sue in Vancouver, USA
http://www.hearinglosshelp.com/articles/balancesystem.htm
This is a small part of that article:
Unlikely as 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.
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I know exactly how you feel: I now have trouble comprehending verbal instructions and communication and I also have difficulty word-finding very frequently. Something I read helped to validate me: it is from Dr. Neil Bauman, Ph.D. At the Center for Hearing Loss Help. He wrote, "Unlikely as 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 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.".
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I read the article and IT IS SO ME! I am so happy to find something that validate's what I am feeling. Now I understand, but I'm kind of sad because now I'm wondering if I will ever be able to do what I want. Recently, I was pulled aside by one of my instructors. He expressed his concern for me. In one of my classes, I will have to do a lot of conceptualizing and applying what I'm reading. I'm reading, but to apply and conceptualize seems hard. I can't multitask like I use to. I worry because I plan on being a counselor someday. I won't be an effective one if I can't conceptualize well (or fast) because I tend to take more time processing things now-a-days. I put so much time into this and I'm already half way done. This is so depressing! I do well by myself and with papers, but I am not doing well with the discussion part of it (groups), mainly because I seem withdrawn. I don't share and talk as much as I used to. So now it seems, that this will be the downfall of me. Any suggestions? Thanks all!
PHX
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I also find it interesting that one person will not read the posts of the previous person. :o So, you got the information twice.
Sue in Vancouver, USA
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It's tough when you think this AN problem could prove to be a threat to your chosen profession. That's how I felt last summer. I'm a psychologist - talking to people is my livelihood. Also a college professor. I actually got over my anxiety about the whole situation once I made the decision that I would simply keep moving forward, do my best, and make someone else raise my condition as an issue. Well, that hasn't happened. In fact, I began to notice all the support I had in my environment, and realized many of my fears were groundless.
I really, really struggle every day with my hearing, communication, and fatigue. I know I'm more withdrawn in some settings than I used to be. Here's some good news - recently, my symptoms have improved, abruptly and unexpectedly. Symptoms being "wonkiy head," balance problems, and fatigue. Along with my improvement, came much, much better energy. I believe my unseen daily struggles with balance were draining my energy.
I think it's critical to do everything we can to optimize whatever hearing we have, especially in the social services/sciences. I see my audiologist frequently, and make sure my hearing aid is adjusted to the optimum levels.
PM me if you want, it seems like we have similar challenges in our lives.
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Seeing it twice is good. Shows that the info is very important to others too. Helps with me thinking that maybe I am making it bigger than it is. Thanks everyone!
I also find it interesting that one person will not read the posts of the previous person. :o So, you got the information twice.
Sue in Vancouver, USA
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You know what, that is a very good point that you bring up about having someone else raise my condition as an issue. So, as long as they don't say that my AN, hearing problems, processing problems, etc. are keeping me from doing my work and being an effective counselor, I guess I shouldn't blame my tumor so much. I've been thinking A LOT lately and if I can help it, I will try my best and accomplish what I want to do. Things change all the time, like how I was doing well and then my tumor diagnosis came a long. There's a good chance that I will get use to the new me and continue doing what I want to do. I'm hoping this is a temporary thing, although, it didn't help much that I just stopped taking steroids, so now there are new things coming up. I'm really tired and my vision isn't that as great, so I'm assuming this is one of the reasons that I seem withdrawn too. Thank you very much for what you've shared with me.
I got through some readings for classes and I feel like they've helped me a lot in understanding my struggles. I feel that if I can get over my fear of sharing about myself, I might actually have something to offer the class. It's exciting, but then again thinking and doing are two totally different things to me.
Again, thank you.
PHX
It's tough when you think this AN problem could prove to be a threat to your chosen profession. That's how I felt last summer. I'm a psychologist - talking to people is my livelihood. Also a college professor. I actually got over my anxiety about the whole situation once I made the decision that I would simply keep moving forward, do my best, and make someone else raise my condition as an issue. Well, that hasn't happened. In fact, I began to notice all the support I had in my environment, and realized many of my fears were groundless.
I really, really struggle every day with my hearing, communication, and fatigue. I know I'm more withdrawn in some settings than I used to be. Here's some good news - recently, my symptoms have improved, abruptly and unexpectedly. Symptoms being "wonkiy head," balance problems, and fatigue. Along with my improvement, came much, much better energy. I believe my unseen daily struggles with balance were draining my energy.
I think it's critical to do everything we can to optimize whatever hearing we have, especially in the social services/sciences. I see my audiologist frequently, and make sure my hearing aid is adjusted to the optimum levels.
PM me if you want, it seems like we have similar challenges in our lives.