Author Topic: I feel dumb  (Read 27830 times)

dalern

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Re: I feel dumb
« Reply #30 on: October 16, 2010, 09:08:49 am »
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
Dale Barnes, RN, MSN, CLNC
Tarzana, CA
1998 Sudden Onset Idiopathic Sensorineural  hearing loss diagnosed at House Ear Institute, Los Angeles
BAHA June 30, 2010 Dr. Jeffrey Harris UCSD San Diego

JerseyGirl2

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Re: I feel dumb
« Reply #31 on: October 16, 2010, 10:03:53 am »
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)
 
Translab surgery and BAHA implant: House Ear Institute, Los Angeles, 1/2008
Drs. J. House, Schwartz, Wilkinson, and Stefan
BAHA Intenso, 6/2008
no facial, balance, or vision problems either before or after surgery ... just hearing loss
Monmouth County, NJ

Kaybo

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Re: I feel dumb
« Reply #32 on: October 16, 2010, 11:24:15 am »
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
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
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SSD
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JerseyGirl2

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Re: I feel dumb
« Reply #33 on: October 16, 2010, 12:17:13 pm »

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
Translab surgery and BAHA implant: House Ear Institute, Los Angeles, 1/2008
Drs. J. House, Schwartz, Wilkinson, and Stefan
BAHA Intenso, 6/2008
no facial, balance, or vision problems either before or after surgery ... just hearing loss
Monmouth County, NJ

Kaybo

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Re: I feel dumb
« Reply #34 on: October 16, 2010, 12:31:48 pm »
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"...

;D
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

JerseyGirl2

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Re: I feel dumb
« Reply #35 on: October 16, 2010, 01:51:54 pm »
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)
Translab surgery and BAHA implant: House Ear Institute, Los Angeles, 1/2008
Drs. J. House, Schwartz, Wilkinson, and Stefan
BAHA Intenso, 6/2008
no facial, balance, or vision problems either before or after surgery ... just hearing loss
Monmouth County, NJ

ddaybrat

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Re: I feel dumb
« Reply #36 on: November 07, 2010, 10:57:24 pm »
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
1.4 x 1.5 x 0.4 cm AN on left side
retromastoid craniectomy 3/31/2010
Dr. Randy Gehring - Lafayette, IN
Tinnitis, deafness
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4 months post-op:
Facial movement returning
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Transverse ligament adjustment on upper lid

pjb

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Re: I feel dumb
« Reply #37 on: November 08, 2010, 07:43:20 am »
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
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

Nickittynic

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Re: I feel dumb
« Reply #38 on: November 09, 2010, 01:51:17 pm »
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?
25 year old OBGYN nurse, wife, mother of two
5.5cm x 3.1cm left side AN removed via retrosigmoid 9/09 @ Hopkins
SSD, Tinnitus, Chronic Migraines, Facial paralysis (improving!)
Resolved - Left sided weakness, Cognitive issues
Gold weight, upper and lower punctal plugs, tarsorrhaphy

phx

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Re: I feel dumb
« Reply #39 on: November 10, 2010, 09:21:40 pm »
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
« Last Edit: November 10, 2010, 09:31:48 pm by phx »

phx

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Re: I feel dumb
« Reply #40 on: November 10, 2010, 09:30:41 pm »
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?

Joseph

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Re: I feel dumb
« Reply #41 on: November 11, 2010, 09:23:55 pm »
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
Three resection surgeries; 2008-2010. Tumor @diagnosis: 4.5cm diam. brainstem "C" shaped Remaining tumor: 2.5cm wide by 3.3cm long/ no more brainstem compression but residual tumor rests near brainstem. Cyberknife @ BMC completed 11-11-2010.

Captain Deb

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Re: I feel dumb
« Reply #42 on: November 13, 2010, 09:23:53 am »
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
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
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nftwoed

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Re: I feel dumb
« Reply #43 on: November 16, 2010, 09:54:53 pm »
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...

phx

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Re: I feel dumb
« Reply #44 on: November 19, 2010, 09:07:05 pm »

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

 


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