New to the Group

[Guest guest]

Several of us have Dr OH, but I live near you!

Thanks,

Vitalady, Inc. T

www.vitalady.com

If you are interested in PayPal, please click here:

https://secure.paypal.com/affil/pal=vitalady%40bigfoot.com

New to the group

Hi everyone. Just wanted to post and let y'all know I'm here. =) I

am having an open RNY with Dr. Oh in Federal Way, WA on Tuesday,

January 28th. I am SO excited...and nervous...and anxious...and

getting SCARED!!! Just being honest. I know this is going to be

worth it...but it's just the waiting. I am not scared of the surgery

itself...but worry about the pain afterwards. Also a bit concerned

with the rule of not lifting more than 5 pounds for 8 weeks. I have

an 11 month old daughter! That's going to be a tough one. Ok..I'll

quit rambling on now! Glad to be here!!

[Guest guest]

Several of us have Dr OH, but I live near you!

Thanks,

Vitalady, Inc. T

www.vitalady.com

If you are interested in PayPal, please click here:

https://secure.paypal.com/affil/pal=vitalady%40bigfoot.com

New to the group

Hi everyone. Just wanted to post and let y'all know I'm here. =) I

am having an open RNY with Dr. Oh in Federal Way, WA on Tuesday,

January 28th. I am SO excited...and nervous...and anxious...and

getting SCARED!!! Just being honest. I know this is going to be

worth it...but it's just the waiting. I am not scared of the surgery

itself...but worry about the pain afterwards. Also a bit concerned

with the rule of not lifting more than 5 pounds for 8 weeks. I have

an 11 month old daughter! That's going to be a tough one. Ok..I'll

quit rambling on now! Glad to be here!!

[Guest guest]

Several of us have Dr OH, but I live near you!

Thanks,

Vitalady, Inc. T

www.vitalady.com

If you are interested in PayPal, please click here:

https://secure.paypal.com/affil/pal=vitalady%40bigfoot.com

New to the group

Hi everyone. Just wanted to post and let y'all know I'm here. =) I

am having an open RNY with Dr. Oh in Federal Way, WA on Tuesday,

January 28th. I am SO excited...and nervous...and anxious...and

getting SCARED!!! Just being honest. I know this is going to be

worth it...but it's just the waiting. I am not scared of the surgery

itself...but worry about the pain afterwards. Also a bit concerned

with the rule of not lifting more than 5 pounds for 8 weeks. I have

an 11 month old daughter! That's going to be a tough one. Ok..I'll

quit rambling on now! Glad to be here!!

[Guest guest]

Well I think it is any good surgeons responsibility to make sure you know this

is no easy fix. Most docs present the good, the bad, and the ugly of it all.

As for still being hungry......... I have not had one hunger pain since May

29th, 2003. But I do know others who do.

Hugs,

New to the group

Hello all,

I went for my consultation 1/23 I brought my hubby along as he has

not been very thrilled with my decision to have the surgery because

he thinks I'll die. I was so disappointed with the visit. It was like

the Dr. was on my husbands side! Telling me it's not a quick fix and

how I should go to some " Fit for Life " center.

Is it normal for the doctor to try to talk you out of having the

surgery on your first visit? Was he really just trying to see if I

was really serious?

He was telling me also that some people that have this surgery are

still hungry all the time as if they had thier whole stomach intact.

Has anyone ever heard of this?

[Guest guest]

Welcome to the group, . You will find a lot of friends and a

lot of support. Now is the time to get started and follow through.

We're glad to have you here.

Pat

> Hey Guys,

> My name is and I just joined the group. I am 20-years-old

and a junior

> in college. I have been overweight for a major part of my life and

I have

> always been really self-conscious. I typically eat what I want

when I want

> it because I want it. I am sick of being fat and unhealthy! I have

been on

> and off diets for quite a while, but I know I need to get back

into the

> groove of things. So, I found this group and I hope that with the

support of

> you guys that I will be able to reach my goal. I KNOW that I have

it in me.

> Well, I currently weigh 256 lbs (I am 5'8''), which is quite a

lot. My true

> goal for myself will be to loose 110 lbs., but I am just going to

take it

> ONE day at a time. Yesterday I did fabulous, and doing I am doing

great! I

> have already had 2 liters of water, been eating good, and I am

going to go

> for a long walk here in a bit.

>

> Last week I watched Montel , and he had a show about his

program

> that he has with his fitness trainer called BodyChange. This one

woman that

> was on the show lost 245 lbs using this program, so I got myself

really

> pumped up. I went out and bought the book and I am going to use

that as my

> guide. I know that if I really work hard and can achieve my goals

and

> hopefully w/your guys's help you can keep me motivated! So, keep

the e-mails

> coming! I see that this is a very active group and I am glad for

that! Until

> next time,

>

>

>

> LIVE TO LOVE

>

>

>

>

>

>

>

>

[Guest guest]

Hi , and welcome. I had a thought, as my brother-in-law works at

Duke - which is just down the road from you. They may have a low-cost

clinic or have a pro bono program for people with low incomes. I'd

ask him, but he doesn't work in the medical field and would have no

clue what the answer would be. Also, as you are currently a

student you should be able to get medical coverage through your school

at a lowered rate. Worth checking into at any rate...

My 2 cents,

Kathleen, CKD 22 years

>

>

> Crystal,

> It's funny that you mention Greenville, SC. I was born there and

> lived there for years. The doctor that diagnosed me was in

> Spartanburg. Unfortunately I am living in Raleigh, NC while I attend

> school. So if you know of any neph. down this way who take charity

> cases or are willing to work for peanuts please let me know.

>

> Thanks,

>

[Guest guest]

For those of you who thought of the health care center at the university, that

is a great idea. My youngest is a student at USC (go Trojans) and SC requres

all students to pay for university health care coverage in our case despite her

being covered by my husbands work insurance. I hope that helps.

In a message dated 3/7/2005 12:50:25 PM Eastern Standard Time, " Kathleen "

writes:

>

>

>

>Hi , and welcome.  I had a thought, as my brother-in-law works at

>Duke - which is just down the road from you.  They may have a low-cost

>clinic or have a pro bono program for people with low incomes.  I'd

>ask him, but he doesn't work in the medical field and would have no

>clue what the answer would be.    Also, as you are currently a

>student you should be able to get medical coverage through your school

>at a lowered rate.  Worth checking into at any rate...

>

>My 2 cents,

>Kathleen, CKD 22 years

>

>>

>>

>> Crystal,

>> It's funny that you mention Greenville, SC.  I was born there and

>> lived there for years.  The doctor that diagnosed me was in

>> Spartanburg.  Unfortunately I am living in Raleigh, NC while I attend

>> school.  So if you know of any neph. down this way who take charity

>> cases or are willing to work for peanuts please let me know.

>>

>> Thanks,

>>

>

>

>

>

>

>

>

>

>

>

>To edit your settings for the group, go to our Yahoo Group

>home page:

>http://groups.yahoo.com/group/iga-nephropathy/

>

>To unsubcribe via email,

>iga-nephropathy-unsubscribe

>Visit our companion website at www.igan.ca. The site is entirely supported by

donations. If you would like to help, go to:

>http://www.igan.ca/id62.htm

>

>Thank you

>

[Guest guest]

For those of you who thought of the health care center at the university, that

is a great idea. My youngest is a student at USC (go Trojans) and SC requres

all students to pay for university health care coverage in our case despite her

being covered by my husbands work insurance. I hope that helps.

In a message dated 3/7/2005 12:50:25 PM Eastern Standard Time, " Kathleen "

writes:

>

>

>

>Hi , and welcome.  I had a thought, as my brother-in-law works at

>Duke - which is just down the road from you.  They may have a low-cost

>clinic or have a pro bono program for people with low incomes.  I'd

>ask him, but he doesn't work in the medical field and would have no

>clue what the answer would be.    Also, as you are currently a

>student you should be able to get medical coverage through your school

>at a lowered rate.  Worth checking into at any rate...

>

>My 2 cents,

>Kathleen, CKD 22 years

>

>>

>>

>> Crystal,

>> It's funny that you mention Greenville, SC.  I was born there and

>> lived there for years.  The doctor that diagnosed me was in

>> Spartanburg.  Unfortunately I am living in Raleigh, NC while I attend

>> school.  So if you know of any neph. down this way who take charity

>> cases or are willing to work for peanuts please let me know.

>>

>> Thanks,

>>

>

>

>

>

>

>

>

>

>

>

>To edit your settings for the group, go to our Yahoo Group

>home page:

>http://groups.yahoo.com/group/iga-nephropathy/

>

>To unsubcribe via email,

>iga-nephropathy-unsubscribe

>Visit our companion website at www.igan.ca. The site is entirely supported by

donations. If you would like to help, go to:

>http://www.igan.ca/id62.htm

>

>Thank you

>

[Guest guest]

For those of you who thought of the health care center at the university, that

is a great idea. My youngest is a student at USC (go Trojans) and SC requres

all students to pay for university health care coverage in our case despite her

being covered by my husbands work insurance. I hope that helps.

In a message dated 3/7/2005 12:50:25 PM Eastern Standard Time, " Kathleen "

writes:

>

>

>

>Hi , and welcome.  I had a thought, as my brother-in-law works at

>Duke - which is just down the road from you.  They may have a low-cost

>clinic or have a pro bono program for people with low incomes.  I'd

>ask him, but he doesn't work in the medical field and would have no

>clue what the answer would be.    Also, as you are currently a

>student you should be able to get medical coverage through your school

>at a lowered rate.  Worth checking into at any rate...

>

>My 2 cents,

>Kathleen, CKD 22 years

>

>>

>>

>> Crystal,

>> It's funny that you mention Greenville, SC.  I was born there and

>> lived there for years.  The doctor that diagnosed me was in

>> Spartanburg.  Unfortunately I am living in Raleigh, NC while I attend

>> school.  So if you know of any neph. down this way who take charity

>> cases or are willing to work for peanuts please let me know.

>>

>> Thanks,

>>

>

>

>

>

>

>

>

>

>

>

>To edit your settings for the group, go to our Yahoo Group

>home page:

>http://groups.yahoo.com/group/iga-nephropathy/

>

>To unsubcribe via email,

>iga-nephropathy-unsubscribe

>Visit our companion website at www.igan.ca. The site is entirely supported by

donations. If you would like to help, go to:

>http://www.igan.ca/id62.htm

>

>Thank you

>

[Guest guest]

Hi Danny, welcome to the group. I will ocasionally have the choking

problem but not often, about once or twice a month. I have pain in

my joints, but not in my side. Hope this helps.

Donna PLS NC

>

> Hello:

> The neroligist said I had this PLS over a year ago and I

just

> started having this choking feeling while I am eating but I am not

> choking on the food but it seems like my throat is closing up and

I

> am not getting any air is anyone else having this problem. also I

> have alot of left side pain too which I have had since day one

does

> any one else have this. Thanks Danny

[Guest guest]

Hi Tammy, Welcome to the group. My son 14 has had igan for almost a year now,

so any questions you have, your in the right place.

tav110 wrote:

Hi, I'm new to the group my 15 year old son was recently diagonised

with IGA Nephropathy. To make a long story short. The first doctor

we say diagonisis was Chronic Glomerulonephritis IGA Nephropathy. He

wrote both down for me. We took him for a 2nd opinion. The 2nd

doctor didn't mention Chronic Glomeulonephritis. Can anyone tell me

the difference? Of all the questions we wrote this is one I forgot.

Thanks for the help. I have been reading posting and found them very

helpful.

Tammy

To edit your settings for the group, go to our Yahoo Group

home page:

http://groups.yahoo.com/group/iga-nephropathy/

To unsubcribe via email,

iga-nephropathy-unsubscribe

Visit our companion website at www.igan.ca. The site is entirely supported by

donations. If you would like to help, go to:

http://www.igan.ca/id62.htm

Thank you

---------------------------------

[Guest guest]

Hi Tammy, Welcome to the group. My son 14 has had igan for almost a year now,

so any questions you have, your in the right place.

tav110 wrote:

Hi, I'm new to the group my 15 year old son was recently diagonised

with IGA Nephropathy. To make a long story short. The first doctor

we say diagonisis was Chronic Glomerulonephritis IGA Nephropathy. He

wrote both down for me. We took him for a 2nd opinion. The 2nd

doctor didn't mention Chronic Glomeulonephritis. Can anyone tell me

the difference? Of all the questions we wrote this is one I forgot.

Thanks for the help. I have been reading posting and found them very

helpful.

Tammy

To edit your settings for the group, go to our Yahoo Group

home page:

http://groups.yahoo.com/group/iga-nephropathy/

To unsubcribe via email,

iga-nephropathy-unsubscribe

Visit our companion website at www.igan.ca. The site is entirely supported by

donations. If you would like to help, go to:

http://www.igan.ca/id62.htm

Thank you

---------------------------------

[Guest guest]

Thank you and all the members here. I have been reading messages

posted on this site for about a month, while getting a second

opinion on Blake's condition. As with every parent just hearing the

news was hard. Now I've notice my concerds have change some. Like

will he take the medication? Or will he eat a health well balance

diet now? At the same time I want to be his mother, but I also know

I can't do this for him. Altought at time I'd like to. How is your

son doing, how are things going for him? I will keep him and this

group in our prayers.

Tammy

>

> Hi, I'm new to the group my 15 year old son was recently

diagonised

> with IGA Nephropathy. To make a long story short. The first

doctor

> we say diagonisis was Chronic Glomerulonephritis IGA Nephropathy.

He

> wrote both down for me. We took him for a 2nd opinion. The 2nd

> doctor didn't mention Chronic Glomeulonephritis. Can anyone tell

me

> the difference? Of all the questions we wrote this is one I

forgot.

> Thanks for the help. I have been reading posting and found them

very

> helpful.

>

> Tammy

>

>

>

>

>

>

>

>

> To edit your settings for the group, go to our Yahoo Group

> home page:

> http://groups.yahoo.com/group/iga-nephropathy/

>

> To unsubcribe via email,

> iga-nephropathy-unsubscribe

> Visit our companion website at www.igan.ca. The site is entirely

supported by donations. If you would like to help, go to:

> http://www.igan.ca/id62.htm

>

> Thank you

>

>

>

> ---------------------------------

>

[Guest guest]

Thank you and all the members here. I have been reading messages

posted on this site for about a month, while getting a second

opinion on Blake's condition. As with every parent just hearing the

news was hard. Now I've notice my concerds have change some. Like

will he take the medication? Or will he eat a health well balance

diet now? At the same time I want to be his mother, but I also know

I can't do this for him. Altought at time I'd like to. How is your

son doing, how are things going for him? I will keep him and this

group in our prayers.

Tammy

>

> Hi, I'm new to the group my 15 year old son was recently

diagonised

> with IGA Nephropathy. To make a long story short. The first

doctor

> we say diagonisis was Chronic Glomerulonephritis IGA Nephropathy.

He

> wrote both down for me. We took him for a 2nd opinion. The 2nd

> doctor didn't mention Chronic Glomeulonephritis. Can anyone tell

me

> the difference? Of all the questions we wrote this is one I

forgot.

> Thanks for the help. I have been reading posting and found them

very

> helpful.

>

> Tammy

>

>

>

>

>

>

>

>

> To edit your settings for the group, go to our Yahoo Group

> home page:

> http://groups.yahoo.com/group/iga-nephropathy/

>

> To unsubcribe via email,

> iga-nephropathy-unsubscribe

> Visit our companion website at www.igan.ca. The site is entirely

supported by donations. If you would like to help, go to:

> http://www.igan.ca/id62.htm

>

> Thank you

>

>

>

> ---------------------------------

>

[Guest guest]

Hi Tammy, Its been almost a year since his diagnoses and its still a constant

worry. Being part of this group has helped so much. As for , I have to

say he has handled taking his medications and doing everything his neph tells

him to do. He is on a sodium restriction of 1000mg aday, which is not easy to

follow, but he reads all the labels and if it has to much sodium he won;t eat

it. When he went on the ton of meds, I bought 2 pill boxes for a.m. pills and

evening pills.

Every sunday night I get them ready for him to take. As far as being on the high

doses of prednisone, he eat very very well, it was hard to keep food in the

house.

His appetite has calmed down now that he is down to 5mg. He will be starting a

new treatment plan soon to see if we can't get his protein spill down some more,

its still to high after a year of tx. How is Blake handling all this?

tav110 wrote:

Thank you and all the members here. I have been reading messages

posted on this site for about a month, while getting a second

opinion on Blake's condition. As with every parent just hearing the

news was hard. Now I've notice my concerds have change some. Like

will he take the medication? Or will he eat a health well balance

diet now? At the same time I want to be his mother, but I also know

I can't do this for him. Altought at time I'd like to. How is your

son doing, how are things going for him? I will keep him and this

group in our prayers.

Tammy

>

> Hi, I'm new to the group my 15 year old son was recently

diagonised

> with IGA Nephropathy. To make a long story short. The first

doctor

> we say diagonisis was Chronic Glomerulonephritis IGA Nephropathy.

He

> wrote both down for me. We took him for a 2nd opinion. The 2nd

> doctor didn't mention Chronic Glomeulonephritis. Can anyone tell

me

> the difference? Of all the questions we wrote this is one I

forgot.

> Thanks for the help. I have been reading posting and found them

very

> helpful.

>

> Tammy

>

>

>

>

>

>

>

>

> To edit your settings for the group, go to our Yahoo Group

> home page:

> http://groups.yahoo.com/group/iga-nephropathy/

>

> To unsubcribe via email,

> iga-nephropathy-unsubscribe

> Visit our companion website at www.igan.ca. The site is entirely

supported by donations. If you would like to help, go to:

> http://www.igan.ca/id62.htm

>

> Thank you

>

>

>

> ---------------------------------

>

[Guest guest]

Hi Tammy, Its been almost a year since his diagnoses and its still a constant

worry. Being part of this group has helped so much. As for , I have to

say he has handled taking his medications and doing everything his neph tells

him to do. He is on a sodium restriction of 1000mg aday, which is not easy to

follow, but he reads all the labels and if it has to much sodium he won;t eat

it. When he went on the ton of meds, I bought 2 pill boxes for a.m. pills and

evening pills.

Every sunday night I get them ready for him to take. As far as being on the high

doses of prednisone, he eat very very well, it was hard to keep food in the

house.

His appetite has calmed down now that he is down to 5mg. He will be starting a

new treatment plan soon to see if we can't get his protein spill down some more,

its still to high after a year of tx. How is Blake handling all this?

tav110 wrote:

Thank you and all the members here. I have been reading messages

posted on this site for about a month, while getting a second

opinion on Blake's condition. As with every parent just hearing the

news was hard. Now I've notice my concerds have change some. Like

will he take the medication? Or will he eat a health well balance

diet now? At the same time I want to be his mother, but I also know

I can't do this for him. Altought at time I'd like to. How is your

son doing, how are things going for him? I will keep him and this

group in our prayers.

Tammy

>

> Hi, I'm new to the group my 15 year old son was recently

diagonised

> with IGA Nephropathy. To make a long story short. The first

doctor

> we say diagonisis was Chronic Glomerulonephritis IGA Nephropathy.

He

> wrote both down for me. We took him for a 2nd opinion. The 2nd

> doctor didn't mention Chronic Glomeulonephritis. Can anyone tell

me

> the difference? Of all the questions we wrote this is one I

forgot.

> Thanks for the help. I have been reading posting and found them

very

> helpful.

>

> Tammy

>

>

>

>

>

>

>

>

> To edit your settings for the group, go to our Yahoo Group

> home page:

> http://groups.yahoo.com/group/iga-nephropathy/

>

> To unsubcribe via email,

> iga-nephropathy-unsubscribe

> Visit our companion website at www.igan.ca. The site is entirely

supported by donations. If you would like to help, go to:

> http://www.igan.ca/id62.htm

>

> Thank you

>

>

>

> ---------------------------------

>

[Guest guest]

Hi Tammy, Its been almost a year since his diagnoses and its still a constant

worry. Being part of this group has helped so much. As for , I have to

say he has handled taking his medications and doing everything his neph tells

him to do. He is on a sodium restriction of 1000mg aday, which is not easy to

follow, but he reads all the labels and if it has to much sodium he won;t eat

it. When he went on the ton of meds, I bought 2 pill boxes for a.m. pills and

evening pills.

Every sunday night I get them ready for him to take. As far as being on the high

doses of prednisone, he eat very very well, it was hard to keep food in the

house.

His appetite has calmed down now that he is down to 5mg. He will be starting a

new treatment plan soon to see if we can't get his protein spill down some more,

its still to high after a year of tx. How is Blake handling all this?

tav110 wrote:

Thank you and all the members here. I have been reading messages

posted on this site for about a month, while getting a second

opinion on Blake's condition. As with every parent just hearing the

news was hard. Now I've notice my concerds have change some. Like

will he take the medication? Or will he eat a health well balance

diet now? At the same time I want to be his mother, but I also know

I can't do this for him. Altought at time I'd like to. How is your

son doing, how are things going for him? I will keep him and this

group in our prayers.

Tammy

>

> Hi, I'm new to the group my 15 year old son was recently

diagonised

> with IGA Nephropathy. To make a long story short. The first

doctor

> we say diagonisis was Chronic Glomerulonephritis IGA Nephropathy.

He

> wrote both down for me. We took him for a 2nd opinion. The 2nd

> doctor didn't mention Chronic Glomeulonephritis. Can anyone tell

me

> the difference? Of all the questions we wrote this is one I

forgot.

> Thanks for the help. I have been reading posting and found them

very

> helpful.

>

> Tammy

>

>

>

>

>

>

>

>

> To edit your settings for the group, go to our Yahoo Group

> home page:

> http://groups.yahoo.com/group/iga-nephropathy/

>

> To unsubcribe via email,

> iga-nephropathy-unsubscribe

> Visit our companion website at www.igan.ca. The site is entirely

supported by donations. If you would like to help, go to:

> http://www.igan.ca/id62.htm

>

> Thank you

>

>

>

> ---------------------------------

>

[Guest guest]

In a message dated 4/3/2006 10:08:39 P.M. Eastern Daylight Time,

red_1_9_7_5@... writes:

Just from reading the posts, I can tell that everyone here gets to know each

other, and everyone seems so nice...I wish I had found a group like this

years ago!! Thanks for the welcome everyone!

I just love this list ... the people are genuine and sincere and everyone

really does " get it " where so many friends and family don't, no matter how hard

they try. I'm so glad you found it. I wish I had years before I did ... the

collection of experiences and information is just amazing!

Best -- Jill

[Guest guest]

In a message dated 4/3/2006 10:08:39 P.M. Eastern Daylight Time,

red_1_9_7_5@... writes:

Just from reading the posts, I can tell that everyone here gets to know each

other, and everyone seems so nice...I wish I had found a group like this

years ago!! Thanks for the welcome everyone!

I just love this list ... the people are genuine and sincere and everyone

really does " get it " where so many friends and family don't, no matter how hard

they try. I'm so glad you found it. I wish I had years before I did ... the

collection of experiences and information is just amazing!

Best -- Jill

[Guest guest]

Hi and welcme Fiona. Your situation is a bit different from most of our kids,

who are growing up with a hearing loss. My daughter is 14 and has hearing loss

in both ears, mod-severe. But I do know about notetakers. Usually they use

something called NCR paper, kind of a carbonless " carbon " paper, top copy is

white, next copy is yellow usually. So the notetaker is often someone in the

same class and they just give the other person one of the copies. I guess in a

college you would go through the disabilities office. There is some training

given usually to notetakers and you'd want someone who took good notes. Another

idea would be an FM system, this is used in elementary and high school for kids

with hearing loss. Your daughter would have some sort of receiver on her good

ear and the teacher would wear a tiny microphone/transmitter thing. Then she

would hear the teacher without any background noise, reverberation or

distraction. She might be able to take her own notes using one of these.

Another idea is CART in which someone takes notes of what goes on in the class

verbatim, similar to a court reporter and the words go into the child's

computer so they can follow along with the class. And Carol Flexer has a great

book about how students with hearing loss can succeed in college. Probably you

could find it on Amazon. It sounds like your daughter is a remarkable young

woman and I hope this was just a little speed bump in her life - not a huge

barrier. in GA

new to the group

>

>Hello everyone,

>I have joined this group because my daughter, who is 18 years old, has

>recently lost the hearing in her left ear following the removal of an

>acoustic neuroma. Luckily the hearing in her right ear is still good.

>She has other medical issues, the AN was her 2nd tumor and she has

>epilepsy and shunted hydrocephalus. She's always been a courageous

>fighter and will, I am sure, adapt to the hearing loss but I hope you

>will be able to help me with practical tips for dealing with it. She

>is hoping to go back to college in the fall and we have been warned

>that she may find lectures difficult to follow and should ask for a

>note taker. I am also nervous about the trouble she has with sound

>direction, particularly when crossing the road (this has always been a

>worry of mine because of her seizures). Are there any specific

>routines/clues we can help her to learn that will make the process

>safer?

>Any other advice for someone new to hearing loss?

>Thanks,

>Fiona.

>

>

>

>

>

>All messages posted to this list are private and confidential. Each post is

the intellectual property of the author and therefore subject to copyright

restrictions.

>

[Guest guest]

<<She

is hoping to go back to college in the fall and we have been warned

that she may find lectures difficult to follow and should ask for a

note taker. I am also nervous about the trouble she has with sound

direction, particularly when crossing the road (this has always been a

worry of mine because of her seizures). Are there any specific

routines/clues we can help her to learn that will make the process

safer?>>

I lost the hearing in my right ear at the age of 25 (due to a major head

trauma). I can certainly try to answer any questions about how it changes

things. I was in college at the time. Actually, I had just finished my B.A.

degree and started my M.A. program a few months after it happened. I never

needed help with lectures. It IS more difficult to be sure though. I just

positioned myself so that my good ear was aiming in the correct direction, and

in small groups, I let it be known that I could only hear from one side.

Usually I sat all the way to the right of the classroom so that I could hear

what the other students were saying as well as the professor. As far as

direction of sound: There's no way to fix that. She will have to compensate

with her eyes. You can tell her to be prepared for embarrassing moments when

someone is calling to her and she doesn't know which way to turn to answer them,

or for times when someone is talking to her on her deaf side and she doesn't

realize it, but you can't really " fix " those things either. If you yourself are

calling her from another room in the house, you can be sure to tell her where

you are, not just tell her to come to you, etc. There is a device called a BAHA

that may be something you should look into. I haven't pursed it myself, but

it's made for unilateral hearing loss, and I'm pretty sure cases like your

daughter's would be able to use it. Overall, hearing form only one side is a

disability in my opinion, even when you're past the point of needing to learn

language. But it can be compensated for enough that no one else really knows

about it. That can be both good and bad actually.

Rhonda Savage

Mom to Audrey, 8, hearing; and Neal, 6, CII at 2.9 years

" Hard does not mean impossible. "

[Guest guest]

<<She

is hoping to go back to college in the fall and we have been warned

that she may find lectures difficult to follow and should ask for a

note taker. I am also nervous about the trouble she has with sound

direction, particularly when crossing the road (this has always been a

worry of mine because of her seizures). Are there any specific

routines/clues we can help her to learn that will make the process

safer?>>

I lost the hearing in my right ear at the age of 25 (due to a major head

trauma). I can certainly try to answer any questions about how it changes

things. I was in college at the time. Actually, I had just finished my B.A.

degree and started my M.A. program a few months after it happened. I never

needed help with lectures. It IS more difficult to be sure though. I just

positioned myself so that my good ear was aiming in the correct direction, and

in small groups, I let it be known that I could only hear from one side.

Usually I sat all the way to the right of the classroom so that I could hear

what the other students were saying as well as the professor. As far as

direction of sound: There's no way to fix that. She will have to compensate

with her eyes. You can tell her to be prepared for embarrassing moments when

someone is calling to her and she doesn't know which way to turn to answer them,

or for times when someone is talking to her on her deaf side and she doesn't

realize it, but you can't really " fix " those things either. If you yourself are

calling her from another room in the house, you can be sure to tell her where

you are, not just tell her to come to you, etc. There is a device called a BAHA

that may be something you should look into. I haven't pursed it myself, but

it's made for unilateral hearing loss, and I'm pretty sure cases like your

daughter's would be able to use it. Overall, hearing form only one side is a

disability in my opinion, even when you're past the point of needing to learn

language. But it can be compensated for enough that no one else really knows

about it. That can be both good and bad actually.

Rhonda Savage

Mom to Audrey, 8, hearing; and Neal, 6, CII at 2.9 years

" Hard does not mean impossible. "

[Guest guest]

I was born with a unilateral loss in my left ear. Like Rhonda, I

never used a note-taker or an FM. I sat on the left side of the

classroom, toward the front, unless I was trying to avoid the

professor ;-) As for crossing the street, she just needs to be more

cautious. There is no way to learn how to localize sounds. It just

can't be done. I suppose being born with the loss, I'm used to it. I

imagine it will be an adjustment for her. Most of the time, she will

hear just fine, but in any kind of noisy situation, she will need to

turn her head or move in order to hear someone talking to her.

In addition to the BAHA, there is also a new type of hearing aid

called a Transear, specifically made for people with unilateral

losses. Your daughter might want to consider that too. I am looking

into it for myself and/or my daughter, who inherited the same loss I

have. I called the audi yesterday but haven't heard back from her.

Good luck to you and your daughter.

Cheryl

[Guest guest]

Hello, Fiona!

Cheryl wrote:

>>In addition to the BAHA, there is also a new type of hearing aid

called a Transear, specifically made for people with unilateral

losses. Your daughter might want to consider that too. I am looking

into it for myself and/or my daughter, who inherited the same loss I

have. I called the audi yesterday but haven't heard back from her. <<

Cheryl, you beat me to it! :-)

My son has a complete nerve loss in his left ear, cause unknown (he’s

7 ½). My other son’s godfather lost his hearing in his right ear at the age

of 6 due to meningitis, and I actually met him in college – so I have

indirect classroom experience at both the elementary and post-secondary

levels with unilateral hearing loss. :-)

The company that developed the TransEar is in the process of switching

manufacturers of the unit, so getting new ones made has been a bit delayed.

is the second in line to be fitted for one, and we should hear

something in the next 10 days (we have to make sure that his ear is big

enough to support the TransEar oscillator). The website for the TransEar is

www.transear.com <http://www.transear.com/> .

As far as school/college: my friend would ask his professors to provide

copies of any outlines that they put up on the overheads, especially in

bigger classes. We went to a Jesuit university here in Omaha that usually

had small classes (no more than 20 people once you got to higher level

classes – and anything over 75 was really pretty rare). For the

bigger-sized classes, we would usually share notes anyway. One thing I

would suggest is that you buy your daughter a recorder and have her work

with her professors to have them place the recorder close to their lecturing

post during class – that way she can always listen to the lecture again

later (heck - *I* would have loved to have done that in my higher level poli

sci courses ). You could also look into the EduLink FM System by Phonak –

it’s an FM system that was designed for kids with ADD, and doesn’t block the

ear canal of the “good” ear (a common problem in FM systems for wearers who

need to be mobile and who don’t have an existing hearing aid that can be

modified to carry an FM receiver). got his for school about 6 weeks

ago, and after the initial adjustment period, he’s found that it makes a

world of difference for him.

Good luck to you (and nice to meet you!),

Kris

Mom to (7 y.o., Profound/Complete SNL, Left Ear) and Ethan (6 y.o.,

hearing)

[Guest guest]

In a message dated 4/27/2006 8:14:47 A.M. Eastern Daylight Time,

Barbara.T.Mellert@... writes:

A conductive loss means there are problems with the front part of the ear

canal - the

little bones (hammer, anvil, stirrup), etc. I'm nearly sure that a

conductive loss usually isn't as severe and can sometimes be corrected

with surgery - others will correct me if I'm wrong! :-)

Our Ian has a conductive loss. And from what we've been told by many world

-class doctors, a purely conductive loss usually gets no more severe than 60-70

dbs and many of the issues associated with it can indeed be addressed with

surgery. But what Fiona described does not sound to me like a middle ear

issue. Simply the level of loss indicates to me that it is more. The problem

with a BAHA implant for someone with nerve damage (SNL) is that there is nothing

to receive the vibrations. A conductive loss involves those little vibrating

bones, not the nerves and a BAHA bypasses them. So, I doubt that is an

option .... however, that doesn't mean I'm right. If it's even a possibility

that

you're considering, then I'd find doctors who know about BAHAs.

Our doctors at Columbia Presbyterian are specialists in middle ear issues.

If you're anywhere near NYC and want to contact them, please do. Dr.s Keller

and Haddad are wonderful doctors. Informed and compassionate, they don't talk

down to you and are really really good.

Best -- Jill