New Member

Posted September 24, 2001 · September 24, 2001

WOW! What a small world - where are you now?

> Hey ! I used to live in Midland and Big Spring before that! I

worked at the Big Spring State Hospital. I was the Music Therapy

Supervisor. I am a registered Music Therapist. Before that I was a

case worker at Brenham State School.

>

> And we have one other thing in common. I also had a Thoroughbred

race horse that we turned in to a pleasure rider....and you are

right, the ground is hard and a long way down!!LOL

Posted September 25, 2001 · September 25, 2001

, where in Alabama are you from? I was born in Birmingham and moved when I was 16. I now live in central Fla.

Cindy Masters

285/258/150

Posted July 18, 2002 · July 18, 2002

Hi ,

Welcome to the group. Most everyone here has experienced all of the symptoms

you're describing. My heart goes out to you.

Most of the symptoms you described ARE in fact Chiari related. Call your Primary

care physician, ask him to find you a specialist in Chirai. You'll get the right

answers at that time.

The ear popping is something I get, as well. Almost blacked out from it a couple

of weeks ago. Very annoying to say the least. :-) Likely related to Chiari, as

I've read of many others having this problem.

OK... I'm not an expert, but I've been there and done that. LOL

Take care and take action.

Beth

Brinna's Dream.com

http://www.brinnasdream.com

New Member

Hello. My name is Lynda. I am 34 years old and I was diagnosed with a Chiari

1 malformation in Jan/Feb of this year. It has been an interesting experience

to date, to say the least, and I am finding that many doctors have no clue about

this condition. I am also finding, by reading the material on this site, that I

really don't have a lot of information about my own Chiari...no one has ever

told me which side it is on, what is measures, etc.

I found out about my condition after having an MRI to determine the cause of

stabbing head pain and facial numbness I was experiencing. I have seen two

neurologists and one neorosurgeon and they have all agreed that my Chiari is

" asymptomatic " . I have been diagnosed with TMJ and Myofacial Pain Disorder as

explanation of the facial/head pain I experience and have been told to " go on

with life as if I never heard of Chiari 1 " . I wish it were that easy...

I am finding that every time I experience a strange medical sympton, my

primary care physician wants to blame it on the Chiari. He admits to having

little experience with Chiari patients (in fact he thought the malformation was

in the spine, not the cerebellum) but continues to freak me out every time he

cannot find an easy diagnosis.

I am currently experiencing a situation with my left ear that I was wondering

if anyone else with Chiari had ever experienced. For the past three weeks, my

ear has felt clogged...almost like when you are in an airplane just before your

ear " pops " . My primary care physician claims there is no infection and no

fluid behind the ear drum to cause the sensation so he is perplexed. My next

appointment with my neurologist is not until 8/7 and this is driving me a little

crazy. At the same time my ear clogged, I also had a change in

taste...everything I ate tasted like it had a pound of salt on it. I even got

small ulcers in my mouth and my lips burned whenever I ate or drank anything.

My doctor is saying this may all be caused by my Chiari 1.

Has anyone else ever experienced anything similar?

Please advise.

Thanks!

Help section: http://www.yahoogroups.com/help/

NOTE: NCC refers to posts with No Chiari Content

To Unsubscribe Yourself:

chiari-unsubscribe

WACMA Home: Http://www.wacma.com

WACMA Online Group: http://groups.yahoo.com/group/chiari/

Posted January 20, 2003 · January 20, 2003

Dear ,

I want to welcome you to the GBIC. I'm glad you found us.

Don't be discouraged by your doctor's reluctance. You seem to be

mature gal. Keep your chin up, okay?

Love,

Trace in Va. Beach, VA

Dr. Schechner, Va. Beach, VA

Open RNY -- 9/5/02

Height -- 5' 9 1/2 "

Starting weight -- 351.2

Current weight -- 266

Minus -- 85.2 pounds gone!

Gal. 2:20

Posted January 29, 2003 · January 29, 2003

one only needs a revision for mechanical failure or not losing all they need

to lose

new member

> Hi my name is terry

>

> I had my surgery in March of 2001 weighed in at 293 and now weigh

> between 130 and 140 would like to weigh 125 o I am on a diet. I guess

> that sounds weird but I can't seem to lose any more weight withour

> doing this. I would also like someone to write back to me if they are

> where I am right now and if they are always hungry and feel that they

> eat too much til there stomach hurts. Also what is all this talk

> about revivions this is really scaring me is this only rare cases?

>

> To Subscribe to 's monthly FREE Newsletter send an email to

GBCookbook-subscribe@...

>

Posted June 6, 2003 · June 6, 2003

Hi,

I live in Gaithersburg, MD. I don't have medullary cancer. I have

papillary, and I was diagnosed in 1999. During these 4 years I went

to local support group meeting and thyca conferences. This helped me

a lot to learn about thyroid cancer. I can give you information about

local support groups. Also, there is medullary support group on the

Internet which will be very helpful to you. Here is the information:

Local Support Groups:

ThyCa NIH

Meets: 2nd & 4th Tuesday of each month, 7:00 to 8:30 pm (must pre-

register)

Place: National Institutes of Health

Social Work Conference Room 1N248

Building 10, Clinical Center

Bethesda, MD 20814

[Wisconsin Avenue South exit off 495; Medical

Center Station]

Contact: Margaret Sarris

tel: or

e-mail: ThyCa_NIH@...

ThyCa Washington, DC

Meets: 3rd Saturday of each month, 10:30 a.m. to

Place: Holy Cross Hospital

1500 Forest Glen Road

Physicians Dining Room, 2nd Floor of the main hospital in the

cafeteria

Silver Spring, MD 20910

[Georgia Avenue North exit off 495; Forest Glen Metro Station]

Contact: Bloom

tel:

fax:

e-mail: Washington_DC@...

Medullary Internet Group:

Medullary Support Group: a support forum for people dealing with

medullary thyroid cancer. Subscribe at

http://groups.yahoo.com/group/medullary/join. Note--If you are not

yet registered with Yahoo, you will need to do this before

ubscribing; click on " I'm a New Member--Sign Me Up " at the above

website. Registration is a simple and quick process, as well as

free; you will get a Yahoo password. After you are registered, go

back to http://groups.yahoo.com/group/medullary/join and subscribe to

the list. You will receive a confirmation email that you MUST respond

to, then you will be on the list to get and send email. If for any

reason you cannot complete the Yahoo registration process, you can

automatically subscribe to the list by sending a BLANK email to

Medullary-subscribe . This avoids acceptance of

cookies but gets you basic list membership only; you will not have

access to Yahoo's handy websites unless you register.

Best of Luck,

Lana

Posted June 6, 2003 · June 6, 2003

Hi, Crussomoney -

Welcome to the group. Do you have another name you'd like us to call you? :-)

As Lana mentioned, the medullary support group folks would really be the ones to

be able to help you with the specifics of your disease.

As for the lymphedema, we haven't encountered a lot of that problem here. You

don't say when your surgery was, but my guess (and hope) is that it will abate

with time.

best wishes -

NYC

crussomoney wrote:

> I'm a new member to the group and would like to know when the group

> meets. I live in Potomac, MD. I was diagnosed with Medullary after

> being mis-diagnosed and given a year to live. I managed to put a great

> team together and am now hopefully cancer free due to their efforts. I

> had a radical neck disection (11 hour surgery) at town.

> Unfortunately I started working out again a little too quickly and

> caused some drainage issues. I would love some info. on lymphadema. I

> have a chin that looks like a pelican and the surgeons don't want to

> touch it. I searched the web and found the Kessler institute and

> subsequently set up an appointment with them. I've had unbelievable

> luck with this cancer, but I can't seem to stop hyperfocusing on the

> Calcitonin and CEA numbers that they take every month. 1 point either

> way and I'm either happy for a month or pissed off. I'm wondering

> where I go from here and what do I do if it rematastises. They tell me

> I'm the first medullary case tested for a reaction to Glevax (I don't

> know if that's true) and apparently it had a positive effect on the

> medullary cancer. The intent was to use that " chip " in place of chemo

> if we needed it. Thankfully I didn't need it, but I'd like to know if

> anyone has any experience or alternatives that I can look into. Sorry

> this message is so long, this is my first time ever in a chat/ group.

Posted February 16, 2005 · February 16, 2005

Hi Lori,

A very warm welcome to the group! I am sorry you have been diagnosed with

IgAN. I understand your concerns for your children as well. I had IgAN

symptoms long before I had my children, and actually got a definitive diagnosis

when my youngest was 3 years old. They are now both grown and we are empty

nesters. Other than being more tired than other Mom's were, and sick from time

to time, I do not feel my IgAN had a negative impact on raising my two girls.

I hope it is of some comfort to you to know that the majority of people with

IgAN never reach end stage (only somewhere between 30-50% do, which means

50-70% do not!) but even if that does happen, there are options and it is just

a life adjustment. We have many members who do well on dialysis, and many

who have had successful transplants. Sometimes if you can take a look at the

worst possible outcome, and realize that IF the worst happens, it really is

not that bad, it can help to alleviate some of the concern.

I also wanted to say that I agree with Elisabeth on testing yourself. I am

currently at 18% function, and for me, I find that when I have a break

between lab tests, I am able to not be so concerned about it. As long as you

have

a Neph you trust and feel confident in, let the Neph shoulder some of the

concern. Do you happen to know your kidney function?

As far as the study, I think it would depend on what your current renal

function is and what the possible benefits would be. Cellcept will suppress

your

immune system. I was on it for 3 months in 04. The ACE Inhibitors are

fairly standard treatment for IgAN so I would not be concerned about that. I

agree with Elisabeth that you should only participate if you feel comfortable.

Welcome again Lori.

In a message dated 2/15/2005 8:00:24 P.M. Pacific Standard Time,

lori6470@... writes:

Hi everyone, im new to the group and i was diagnosed wit IgA mid of last

year. I am 34 years old and a mother of two kids. Being diagnosed with this

incurable disease worries me a lot especially my kids are still at a very

young

age. One of the hardest part to accept after being diagnosed is that i am a

medical technologist and as what everybody knows, we do the testing and we

know the results before the docs. I have been running several tests on my self

and just get upset after i find out the results. I work in a quite big

hospital in Dallas so there are so many things i can perform, from iron studies

to

24 hour testings. My neph wants me to participate in a 27 months study with

OMACOR , LISINOPRIL/ LOSARTAN and CELLCEPT. I have read the scoop of the

study but i have a lot f fears about the program. Has anyone in this group

participated in this kind of study?

I hope by joining this group, i can find some peace and comfort in my heart

and in my mind that i am not alone.

Posted February 16, 2005 · February 16, 2005

Dear Lori (Santillan),

Hi and welcome to the group. As we say we're sorry that you have IgAn, but glad

that you're here.

I know how you feel about having this disease and being a mother. It's hard

news to take in the beginning. However, for a chronic illness IgAn is not the

end of the world. The important thing is to be monitored, by a good

nephrologist.

Knowing what your tests results are is good, to a point. Knowing too much, and

worrying about it, is not.

Please reconsider, about testing yourself. Let the neph do the worrying,

worrying so much is not going to help you in accepting that you have this

disease, or learning to live with it.

Definitely have an idea of what your proteinuria, and labs, and kidney function

are. But other than that, knowing too much will scare you unneccessarily- been

there, done that.

My kids are also young- they were 6 months and 2 years, when I was diagnosed.

The good news is, IgAn is usually not heriditary. Just to be on the safe side

our kids are seen once a year by a pediatric nephrologist who checks their BP

and does a urinalysis.

Little kids adapt well to their parent's chronic illness- mine think nothing of

me being tired alot and taking lots of meds, to them it's normal and they know

what I can and can't do. They are very adaptable.

It is overwhelming to be diagnosed with kidney disease in the beginning. But as

you adjust to it you realize that it doesn't need to really affect your life all

that much- little things can help with the progression of kidney disease, like

getting some exercise, eating a balanced diet, getting monitored, and keeping

your BP under control.

If you have doubts about the study, I would not do it. Talk to your doctor

about what your concerns are. But do not feel forced to do it.

Best wishes,

-Elisabeth

Posted February 16, 2005 · February 16, 2005

I like that attitude! I always say to live life to the fullest extent

possible. So much of has to do with our attitudes regarding what life brings

our

way. For me, I count my blessings every single day and can rejoice and

accept each day as a blessing from God.

Also, it is helpful to remember that IgAN is just something you have, not

who you are. try not to let it have to much prominence in your life.

I admire your positive attitude despite being a single mom working and

juggling dialysis too. Any one of those three is a heavy load by itself. You

are

an inspiration to all of us.

In a message dated 2/16/2005 6:39:01 A.M. Pacific Standard Time,

jnewsome72@... writes:

I try to focus all of my energy on getting the most out of life, spending as

much of my time and energy with my daughter when I am not at work and I try

to let my doctors do some of the worrying.

Posted February 16, 2005 · February 16, 2005

Hi Jolanta,

Here is an article stating that the FDA has approved the marketing of Omacor

in the US in November of 2004. You should be able to go to any Pharmacy and

request they put in a special order for it now.

Omega-3 Essential Fatty Acids Product Approved by FDAUpdated: Nov. 12, 2004

BETHESDA, MD, 11 November 2004 â€” The Food and Drug Administration (FDA) on

Wednesday approved the marketing of Omacor, a product containing omega-3 acid

ethyl esters, by the Ross Products business unit of Abbott Laboratories.

Ross spokeswoman Noe said Friday that the company will not market

Omacor and instead will license the product back to ProNova Biocare, the

Norwegian manufacturer with which Ross had " a couple of shared research

programs. "

According to FDA, 1-g Omacor capsules are to be used for the treatment of

hypertriglyceridemia in adults.

FDA in May 2000 had accorded Pronova Biocare orphan designation for Omacor in

the treatment of immunoglobulin A nephropathy, a chronic form of

glomerulonephritis also known as Berger's disease.

Pronova Biocare does not directly market Omacor, preferring to partner with

companies in various countries. According to the Pronova Biocare Web site,

Omacor contains an 84 percent concentrate of eicosapentaenoic acid and

docosahexaenoic acid ethyl esters and 4 mg of the antioxidant alpha-tocopherol,

or

vitamin E.

The company states that the product is approved in some countries to prevent

the recurrence of myocardial infarction and to reduce elevated concentrations

of serum lipids in patients at risk of ischemic heart disease or

pancreatitis. Pronova Biocare also claims that Omacor was the omega-3 essential

fatty

acids product used in Gruppo Italiano per lo Studio della Sopravvivenza

nell'Infarto miocardioâ€”Prevenzione, or GISSI-P, which found that once-daily

intake

of a capsule containing 850â€“882 mg of eicosapentaenoic acid and

docosahexaenoic acid ethyl esters significantly decreased the risk of

myocardial

infarction, stroke, and death in patients who had had a myocardial infarction.

â€”Cheryl A.

In a message dated 2/16/2005 11:01:37 A.M. Pacific Standard Time,

jolantamalobecki@... writes:

Pierre or any one in this group

Do you know how or where to get Omacor?

Thank you.

Jolanta

Posted February 16, 2005 · February 16, 2005

Hi Lori. Welcome to the group.

Testing yourself eh? Good idea? I personally don't think so. You want to be

aware, but you don't want to micro-manage your disease. That can drive you

nuts. It's kind of like the person who buys a home BP monitor and spends the

next six months checking his/here blood pressure every hour.

I don't know what stage of IgAN you are at, or what your proteinuria is,

etc., but things don't usually need to be checked more often than your neph

follow-up appointments are (with mild IgAN, that could easily be 6 months, a

year even - it depends mostly on what your proteinuria is and if there are

any prescription changes).

About that study. OMACOR , LISINOPRIL/ LOSARTAN and CELLCEPT are all fairly

common. Omacor is simply a very good. well-controlled brand of fish oil,

which most IgAN patients take anyway. I don't think it's generally available

in North America yet, but many people would like it to be. Lisinopril is an

ACE inhibitor and Losartan an angiotensin II receptor blocker. Many IgAN

patients routinely are prescribed both (this is something that has been

studied and tested separately, and there seems to be some advantage to those

who can tolerate the combination - it lowers proteinuria more than each drug

alone). It's not uncommon to be taking these and fish oil together, even

without being in a study. The wildcard is Cellcept, in my opinion. Some

people have had success with that, some not, but it's not an unusual drug to

be taking for IgAN - not common, but not unusual. Kidney transplant paitents

take Cellcept routinely. Many people actually beg their nephs to try it. I

would decide on that basis. There's nothing too unusual in there, and

there's a chance that if your IgAN is mild, it may just keep it that way. If

the drugs together turn out to be more than you can handle (some people, as

you know, are more sensitive to drugs than others), you can always drop out

of the trial.

Good luck.

Pierre

new member

>

> Hi everyone, im new to the group and i was diagnosed wit IgA mid of last

year. I am 34 years old and a mother of two kids. Being diagnosed with this

incurable disease worries me a lot especially my kids are still at a very

young age. One of the hardest part to accept after being diagnosed is that i

am a medical technologist and as what everybody knows, we do the testing

and we know the results before the docs. I have been running several tests

on my self and just get upset after i find out the results. I work in a

quite big hospital in Dallas so there are so many things i can perform, from

iron studies to 24 hour testings. My neph wants me to participate in a 27

months study with OMACOR , LISINOPRIL/ LOSARTAN and CELLCEPT. I have read

the scoop of the study but i have a lot f fears about the program. Has

anyone in this group participated in this kind of study?

> I hope by joining this group, i can find some peace and comfort in my

heart and in my mind that i am not alone.

>

Posted February 16, 2005 · February 16, 2005

Thank You so much . God Bless You.

Jolanta

--- W4JC@... wrote:

>

> Hi Jolanta,

>

> Here is an article stating that the FDA has approved

> the marketing of Omacor

> in the US in November of 2004. You should be able

> to go to any Pharmacy and

> request they put in a special order for it now.

>

> Omega-3 Essential Fatty Acids Product Approved by

> FDAUpdated: Nov. 12, 2004

> BETHESDA, MD, 11 November 2004 â€” The Food and Drug

> Administration (FDA) on

> Wednesday approved the marketing of Omacor, a

> product containing omega-3 acid

> ethyl esters, by the Ross Products business unit of

> Abbott Laboratories.

> Ross spokeswoman Noe said Friday that the

> company will not market

> Omacor and instead will license the product back to

> ProNova Biocare, the

> Norwegian manufacturer with which Ross had " a couple

> of shared research programs. "

> According to FDA, 1-g Omacor capsules are to be used

> for the treatment of

> hypertriglyceridemia in adults.

> FDA in May 2000 had accorded Pronova Biocare orphan

> designation for Omacor in

> the treatment of immunoglobulin A nephropathy, a

> chronic form of

> glomerulonephritis also known as Berger's disease.

> Pronova Biocare does not directly market Omacor,

> preferring to partner with

> companies in various countries. According to the

> Pronova Biocare Web site,

> Omacor contains an 84 percent concentrate of

> eicosapentaenoic acid and

> docosahexaenoic acid ethyl esters and 4 mg of the

> antioxidant alpha-tocopherol, or

> vitamin E.

> The company states that the product is approved in

> some countries to prevent

> the recurrence of myocardial infarction and to

> reduce elevated concentrations

> of serum lipids in patients at risk of ischemic

> heart disease or

> pancreatitis. Pronova Biocare also claims that

> Omacor was the omega-3 essential fatty

> acids product used in Gruppo Italiano per lo Studio

> della Sopravvivenza

> nell'Infarto miocardioâ€”Prevenzione, or GISSI-P,

> which found that once-daily intake

> of a capsule containing 850â€“882 mg of

> eicosapentaenoic acid and

> docosahexaenoic acid ethyl esters significantly

> decreased the risk of myocardial

> infarction, stroke, and death in patients who had

> had a myocardial infarction.

> â€”Cheryl A.

>

> In a message dated 2/16/2005 11:01:37 A.M. Pacific

> Standard Time,

> jolantamalobecki@... writes:

>

> Pierre or any one in this group

>

> Do you know how or where to get Omacor?

> Thank you.

>

> Jolanta

>

> [Non-text portions of this message have been

> removed]

>

__________________________________________________

Posted February 16, 2005 · February 16, 2005

Hi

That will be good news to some in our group. So many people have asked about

Omacor over the past couple of years.

Pierre

Re: new member

Hi Jolanta,

Here is an article stating that the FDA has approved the marketing of

Omacor

in the US in November of 2004. You should be able to go to any Pharmacy

and

request they put in a special order for it now.

Omega-3 Essential Fatty Acids Product Approved by FDAUpdated: Nov. 12, 2004

BETHESDA, MD, 11 November 2004 â€” The Food and Drug Administration (FDA) on

Wednesday approved the marketing of Omacor, a product containing omega-3

acid

ethyl esters, by the Ross Products business unit of Abbott Laboratories.

Ross spokeswoman Noe said Friday that the company will not market

Omacor and instead will license the product back to ProNova Biocare, the

Norwegian manufacturer with which Ross had " a couple of shared research

programs. "

According to FDA, 1-g Omacor capsules are to be used for the treatment of

hypertriglyceridemia in adults.

FDA in May 2000 had accorded Pronova Biocare orphan designation for Omacor

in

the treatment of immunoglobulin A nephropathy, a chronic form of

glomerulonephritis also known as Berger's disease.

Pronova Biocare does not directly market Omacor, preferring to partner with

companies in various countries. According to the Pronova Biocare Web site,

Omacor contains an 84 percent concentrate of eicosapentaenoic acid and

docosahexaenoic acid ethyl esters and 4 mg of the antioxidant

alpha-tocopherol, or

vitamin E.

The company states that the product is approved in some countries to prevent

the recurrence of myocardial infarction and to reduce elevated

concentrations

of serum lipids in patients at risk of ischemic heart disease or

pancreatitis. Pronova Biocare also claims that Omacor was the omega-3

essential fatty

acids product used in Gruppo Italiano per lo Studio della Sopravvivenza

nell'Infarto miocardioâ€”Prevenzione, or GISSI-P, which found that once-daily

intake

of a capsule containing 850â€“882 mg of eicosapentaenoic acid and

docosahexaenoic acid ethyl esters significantly decreased the risk of

myocardial

infarction, stroke, and death in patients who had had a myocardial

infarction.

â€”Cheryl A.

In a message dated 2/16/2005 11:01:37 A.M. Pacific Standard Time,

jolantamalobecki@... writes:

Pierre or any one in this group

Do you know how or where to get Omacor?

Thank you.

Jolanta

Posted February 16, 2005 · February 16, 2005

I second the motion!

-Elisabeth

Re: new member

I like that attitude! I always say to live life to the fullest extent

possible. So much of has to do with our attitudes regarding what life brings

our

way. For me, I count my blessings every single day and can rejoice and

accept each day as a blessing from God.

Also, it is helpful to remember that IgAN is just something you have, not

who you are. try not to let it have to much prominence in your life.

I admire your positive attitude despite being a single mom working and

juggling dialysis too. Any one of those three is a heavy load by itself.

You are

an inspiration to all of us.

In a message dated 2/16/2005 6:39:01 A.M. Pacific Standard Time,

jnewsome72@... writes:

I try to focus all of my energy on getting the most out of life, spending as

much of my time and energy with my daughter when I am not at work and I try

to let my doctors do some of the worrying.

Posted January 30, 2006 · January 30, 2006

Amy,

Welcome to the list. It's a great place full of supportive

parents/grandparents/caregivers. The really nice thing is that all communication

modalities

are supported and all choices respected. A refreshing change from some other

lists I've been on.

Our Ian is now 15. We learned of his loss when he was about 7. He's oral,

not because we chose that route because he was born hearing. He considers

himself HOH but jokingly refers to himself as " Deaf Boy. " (You have to say " deaf

boy " as though you're announcing the arrival of a superhero, in a deep, deadly

serious voice.) Ian is a hoot. He is a sophomore in our local high school,

with a TOD, FM system, laptop and other appropriate accommodations. Ian's is

a progressive loss and he may be profoundly deaf by the time he's an adult.

Then again, his loss could stop at anytime. We just don't know.

We also have a hearing daughter, , who will turn 12 soon. Right now

most of our family drama circles around her. We've recently had the first crush,

quickly followed by the first broken heart. Ian's issues usually take second

place now in the day-to-day drama.

Life has pretty much evened out for us when it comes to the hearing loss

stuff. It took a 2 year fight to force our district to provide appropriate

services. Since that was resolved, things have goon quite smoothly. Our fight

has

actually helped others get what they needed -- a nice thing to know.

Both our kids are active in scouting. I'm the troop leader for our daughter

and my hubby is the Scoutmaster for Ian's troop. We're an old married couple,

24 years next month, who can finish each other's sentences and still get on

that same nerve even after all these years. (grin).

Oh, and we live in NY. Near enough to the city to go in for day visits, yet

far enough away that our neighbors have pigs, cows, goats, guinea hens and

even a crotchety old peacock. The guinea hens are currently sitting in my front

yard yelling at our cat, who is patiently sitting on the front steps.

Occasionally she charges into the little group just to see them scatter and

then

comes back to the porch, not hurting any of them. An interspecies game of tag,

it seems.

Well, that's our brief story. Again, welcome to the group,

Jill

Posted April 14, 2006 · April 14, 2006

Hi Kathy,

It's nice to meet you. I'm Debbie, mom to and . is

6 and has a moderate SNHL that wasn't discovered until she was 2 1/2.

is 3 and his job is as my personal " Pateince tester " )

This is a wonderful group of parents who are always there to share

information or just listen when there is a need to vent.

Debbie

sis2k wrote:

Hi all I just join this group I am a mother who is HOH and have 4 children 3

of them are HOH

Some men see things as they are and ask why. Others dream things that never were

and ask why not. G.B Shaw

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

Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+

countries) for 2¢/min or less.

Posted May 1, 2006 · May 1, 2006

In a message dated 5/1/2006 1:56:38 P.M. Eastern Daylight Time,

helathome@... writes:

I've read a few posts about the

Phonak Edulink System but will schools pay for it?

Yes, they can and have. Some do so easily, other districts make you fight

for it. But the answer to this is, yes.

Our Ian's loss started as unilateral and he was aided in the one ear as soon

as we knew about it. Our Ian loss quickly became a bilateral one, so all his

support is for that loss.

The personal FM came next. The school bought the FM and maintains it. But

there are other parents here with far more experience in the other devices you

asked about. I only know about them from early discussions for Ian (and

reading here), but then his loss changed and they were no longer appropriate

choices.

Welcome to the group. I know you'll get some great answers. The collective

knowledge of this group is amazing.

Best -- Jill

Posted May 1, 2006 · May 1, 2006

In a message dated 5/1/2006 1:56:38 P.M. Eastern Daylight Time,

helathome@... writes:

I've read a few posts about the

Phonak Edulink System but will schools pay for it?

Yes, they can and have. Some do so easily, other districts make you fight

for it. But the answer to this is, yes.

Our Ian's loss started as unilateral and he was aided in the one ear as soon

as we knew about it. Our Ian loss quickly became a bilateral one, so all his

support is for that loss.

The personal FM came next. The school bought the FM and maintains it. But

there are other parents here with far more experience in the other devices you

asked about. I only know about them from early discussions for Ian (and

reading here), but then his loss changed and they were no longer appropriate

choices.

Welcome to the group. I know you'll get some great answers. The collective

knowledge of this group is amazing.

Best -- Jill

Posted May 1, 2006 · May 1, 2006

Sounds kind of like our daughter who is mostly HOH in her left ear. The

doctor was not totally comfortable saying she had LVAS, and her aqueducts

are only slightly enlarged anyway. She only had one infection, too, and

that is how we found her loss. Some people tell me the antibiotics (many

ear infections ones are ototoxic) could have caused her loss. However, she

did fail her newborn hearing screen. Her cochlea and other ear parts are

perfectly formed. BUT! LVAS supposedly is not present at birth since the

aqueducts aren't even fully grown yet. Plus, she was born with two tight

knots in her umbilical cord, so one could also wonder if a lack of oxygen

caused her hearing loss. Maybe it's really not LVAS. Ours is a

complicated, puzzling case.

Best of luck to you on this list. It's a great one. There's another good

one, too, just called LVAS, I think, which has Dr. Neil Bauman as its host.

RT in NC

>

> Hi! I think I have lurked long enough! My name is Helen and I have

> a 4 year old daughter with a unilateral profound SNHL in her right

> ear. We discovered her loss at her 4 year old wellness

> appointment. She had been complaining of not being able to hear the

> t.v. and the radio in the car. She had been relatively healthy with

> only one double ear infection at the age of three. We were shocked

> to say the least, and have been trying to figure out the cause of

> her hearing loss ever since. After numerous tests including a CT

> scan, the only abnormality found was slightly enlarged vestibular

> aqueducts bilaterally. She has not been diagnosed with LVAS, but

> we have been advised to avoid contact sports, make arrangements for

> her to have preferential seating in the classroom, and a speech and

> language evaluation.

>

> This is where we are today. She has been evaluated by the speech

> pathologist at school who says she has articulation and phonetic

> delays. We see the special education district today for an

> audiology evaluation. My question is this: Does anyone with a

> child with a unilateral loss have any advice on ALD's in particular

> a Cross System or a personal FM System? Which works better for a

> child with a uniliateral loss? I've read a few posts about the

> Phonak Edulink System but will schools pay for it?

>

> Thank you. Any advice would be greatly appreciated!

>

> 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.

>

Posted May 1, 2006 · May 1, 2006