new to this

[Guest guest]

Yea i know, sometimes i'm unsure what is just puberty....and what is the aspergers or adhd.....since hes on this medication tho...hes very cocky....and arrogant....hes starting alot with his younger brothers...and whiny and yells alot.... My son, well, he used to be into alot of games on playstation 2 and gamecube but hes really not into it much now. sometimes but not much...he was playing a game on the computer alot called roller coaster tycoon 3 building things but he hasnt been doing that much either since this medication he basically is withdrawing it seems more. As for socializing and getting him involved in after school activities....hes very uncoordinated and i cant put him through something he doesnt want to do. luivelez <luivelez@...> wrote: Hi Jenn. One more very important thing to consider with your son isthat he's going through puberty, which by itself is very complicatedfor them. I don't think any boy 11-13 needs to have AS to seem lowfunctioning. And I read a while a go nice study about how the boy'sbrain (girl's too but probably to a lesser extent) goes through aserious cleansing of unused stuff... kind of getting rid of all thecircuits that have not been used... and is not at all that they arenot functional... is that what is at work, very active, is the brainrearranging itself. In addition, middle school is so dramaticallydifferent to elementary school, that most AS children have a hard timeadapting, even though most of them get great grades in

elementaryschool. So your son has very big challenges to deal with at his age.My son is younger than yours, but he learns really well fromeducational electronic games and software. Does your son like thosetypes of games? About the social interaction... I don't know if I've given up tooearly to my son having an active social life... he's a loner... but mywife and I are loners too, and so are millions of great people. If ourAS kids need more individualized learning tools and methods... so beit! As long as they learn to be respectful to others, I really wonderwhat the problem with wanting to be by themselves is...BTW, my son is always looking for info about trains, buses and planeson the internet... and he has an amazing amount of knowledge aboutthem. I actually think it's great and I try to follow-up with hisinterests and show some interest myself (well, we kind of like similarstuff anyway lol). But

his intense interests may end up being a wayfor him to find a satisfactory career in the future.Good luck with your son. Have a great day. F>> Hi all, I'm Jenn and i'm the mother of a son who is 11 and just > recently diagnosed with AS.... a little of his backround..has had > problems since birth..i thought he was deaf at 6 mths....had him > evaluated with early intervention..said his hearing is fine but he > needed speech thearapy...hes been diagnosed in the past with adhd, > odd, bipolar, and also said he had pdd-nos..recently they changed it > all...he sits in his room and plays with trains or spends his time > looking on tv and computer looking for train stuff....>

Be a better Heartthrob. Get better relationship answers from someone who knows. Answers - Check it out.

[Guest guest]

Hi Carla,

Personally, I just ordered the enzymes (we use Houston brand) online

and started giving them on my own. I have found there to be all the

help I need on this list (and a few others). Having said that, having

the help of a knowledgeable nutritionist would be incredible...like

gold..so if that is an option for you, I'd check it out. As a side

note, if you're thinking about supplements, I have just been having

wonderful success with my son (age 4.5) with DMG for sensory and

speech issues. His speech has taken off incredibly, and his major

sensory issues are GONE. In particular, he had severe sound

sensitivity, to the point that I couldn't even consider placing him in

a classroom setting, and now, within a month of beginning DMG, it's

completely gone.

-Sierra

>

> Hi Everyone...

>

> I have a 5 year old son who has been diagnosed with traits of PDD.

He has had early intervention and is currently in the school system's

special needs pre-k program and attends kindergarten for the last 1.5

hours of the day for socialization. All of this has done wonders for

my son. His eye contact is great and is talking very well now. He is

still a bit sensory and of course can always improve on the speech.

>

> I have been doing a lot of research and have attended a seminar

hosted by DeFilice. From this, I have decided to try enzyme

therapy with him. I also have a 3 year old who is a tiny bit speech

delayed and constipated all the time and think that I would like to

begin him on it too.

>

> I have been reading 's book, but still have questions. Should

I hook up with a nutritionist to get going? Do I need to work with my

pediatrician? Where do I start?

>

> Help!

>

> Thank you from the rookie!

> Carla

> Mom of 3 boys.

>

>

[Guest guest]

Sierra..

Thank you so much for advise. I am completely out there right now!

When you say " this list " are you speaking of the group? and is there a list?

Also, another novice question...what is DMG and where/how can I get it!

Thanks from the new kid.

Carla

Re: New to this

Hi Carla,

Personally, I just ordered the enzymes (we use Houston brand) online

and started giving them on my own. I have found there to be all the

help I need on this list (and a few others). Having said that, having

the help of a knowledgeable nutritionist would be incredible...like

gold..so if that is an option for you, I'd check it out. As a side

note, if you're thinking about supplements, I have just been having

wonderful success with my son (age 4.5) with DMG for sensory and

speech issues. His speech has taken off incredibly, and his major

sensory issues are GONE. In particular, he had severe sound

sensitivity, to the point that I couldn't even consider placing him in

a classroom setting, and now, within a month of beginning DMG, it's

completely gone.

-Sierra

>

> Hi Everyone...

>

> I have a 5 year old son who has been diagnosed with traits of PDD.

He has had early intervention and is currently in the school system's

special needs pre-k program and attends kindergarten for the last 1.5

hours of the day for socialization. All of this has done wonders for

my son. His eye contact is great and is talking very well now. He is

still a bit sensory and of course can always improve on the speech.

>

> I have been doing a lot of research and have attended a seminar

hosted by DeFilice. From this, I have decided to try enzyme

therapy with him. I also have a 3 year old who is a tiny bit speech

delayed and constipated all the time and think that I would like to

begin him on it too.

>

> I have been reading 's book, but still have questions. Should

I hook up with a nutritionist to get going? Do I need to work with my

pediatrician? Where do I start?

>

> Help!

>

> Thank you from the rookie!

> Carla

> Mom of 3 boys.

>

>

[Guest guest]

>>I also have a 3 year old who is a tiny bit speech delayed and

constipated all the time and think that I would like to begin him on

it too.

Constipation information

http://www.danasview.net/constip.htm

This is 's enzyme site

http://www.enzymestuff.com/

Dana

[Guest guest]

I'm lucky, Dr. A is only 3 hours away from me so I did not have to travel far.I paid $7800 and transportation to San Diego.It is doubtful your insurance would pay in another country but you can certainly call and ask.

On Thu, Mar 6, 2008 at 2:16 PM, <lindaisnuts@...> wrote:

Hello! Please forgive me if this has been answered (probably a million

times) I tried a search, but couldn't find it.

I am looking into getting the lap band done, but my insurance only

covers $5000 I will be paying atleast 12,000 out of pocket so it was

suggested to look at having it done out of country.

I found this site and it looks like a wonderful and reputable program.

Here are my questions.

What is the approximate cost altogether to have a laproscopic band

with no complications?

Also, would my insurance still pay for a surgery in another country?

Finally, have any of you travelled pretty far to have this done?

Thanks for any help!

[Guest guest]

Howdy! )

You can check out Dr. Aceves' website at

http://www.mexicolapband.com/index1.php And, yes, he's quite

reputable. I was banded Jan. 28th and it was just about as painless

a procedure as I could have hoped for...and I'm not meaning just

physically. The amount of care you're given and the attention to

details is uncommon here in the US.

I doubt your insurance company will be willing to cover procedures

done out of the country but it never hurts to ask. If you're looking

at $12K out of pocket anyway, you'll still be better off cost-wise

with Dr. A. His lapband procedures don't top $8K if I remember

right. If you contact his office, they'll send you information that

will include a price list for all the procedures he does for WLS.

You won't go wrong if you choose him. )

in AR

DOB 1/28/08

297/275/200 for now

>

> Hello! Please forgive me if this has been answered (probably a

million

> times) I tried a search, but couldn't find it.

>

> I am looking into getting the lap band done, but my insurance only

> covers $5000 I will be paying atleast 12,000 out of pocket so it

was

> suggested to look at having it done out of country.

>

> I found this site and it looks like a wonderful and reputable

program.

> Here are my questions.

>

> What is the approximate cost altogether to have a laproscopic band

> with no complications?

> Also, would my insurance still pay for a surgery in another country?

> Finally, have any of you travelled pretty far to have this done?

>

> Thanks for any help!

>

>

[Guest guest]

Hi ,Welcome to the group. You have found a very reputable Dr. and team. They are the best No worries about asking the same question, it is difficult to use the search engine because the same message comes up 100 times because of the way we reply. Anyone who stays with the board doesn't mind repeating themselves I paid $7800 for my band plus the cost of a plan ticket to San Diego. I live in North Dakota so I'm a ways away It is very unlikely that insurance will pay, but that is why most of us are here, our insurance wouldn't pay and we would have to come up with extraordinary out of pocket expenses. Then we pay for surgery in Mexico and realize how blessed we are that insurance wouldn't pay and we found Dr. Aceves Please keep asking

questions and keep researching. When I was researching I needed to call people and talk to "real life" people. I thought maybe this whole site was made up by the Dr. and his staff. How funny that is now Anyway, I asked for Dr. A's referral list and started calling people and asking about their experiences. One gal I called was actually in the van headed back down to Mexicali for a fill and 2 relatives of hers were getting bands done, now that was convincing for me Feel free to email me privately if you would like my phone number. Cyrena WeeksDOB: 1/19/07240/144/145www.cyrenaweeks.blogspot.com

[Guest guest]

Hi! I was banded on 9/14/07. I went to Dr. A. If you have even

tried to get the insurance company to pay anything, have you looked

into what their " prerequesites " (sp?) are??? Usually it takes a good

6 to 8 months just to qualify. You normally have to go to a

Psychologist for a 6 hour evaluation (out of pocket), have a Heart

treadmill test, go to their (the insurance companies qualified)

nutritionist for at least 6 months. Be at least a BMI of 40. (I had

2 co-morbidities and was a 40, but after going to the nutritionist

lost 25 pounds so I no longer qualified)...you are looking into a

long (and heart rendering) complicated list of " Hoops " you have to

jump through in order to get their lousy 5 thousand bucks.

Take my advise (and I AM SURE everyone on this forum will agree with

me) skip all the pain and suffering, and go to DR. A. " DON'T PASS

GO " , (As in the game of Monopoly) and head directly to Mexicali

Mexico where they treat you like a queen (our hospitals are put to

shame by the cleanlinest and kindness that this hospital has to

offer). This was my 13th MAJOR surgery in my lifetime and the most

pleasant. They pick you up at San Diego airport via company van,

take you immediately in for all your tests all in the same day. You

are put up at the Lucerna Hotel (4 star) where there are 4 different

restaurants to choose from and have your " last meal " . You have the

surgery the very next day. If you bring along a mate (as I brought

my hubby), they have a couch in each room so that your mate can stay

with you at all times, by the way, the room is private with your own

bathroom...did I reiterate that this is a HOSPITAL, not a clinic???

You stay there another full day so they can keep an eye on you and

give you another x-ray to make sure the band in properly situated.

Dr. A " s " team " consist of 3 nurses and a partner Doctor (Campos) an

anestist, and a person who goes over all your history with you prior

to the surgery. The nurses all speak excellent english and are the

sweetest people, Lucy, (O.R. nurse) and (you will

abosolutely love him!!!)

Dr. A was quite concerned that my husband eat and he finally gave in

by going to their nice little restaurant (not cafeteria) in the

Hospital where I joined him right along with my push around IV. They

have internet access (wi-fi) and an english speaking TV. The next

morning they transport you back to San Diego where you fly back home,

all complete in 4 days, no hassle, no fuss with beauracacy (another

sp?). Do yourself a favor and immediately fill our the questionaire

at DR. A's site, a co-ordinator will contact you within 24 hours and

perhaps have a surgery date for you immediately!!! I see people are

waiting longer and longer to get in, It only took me 3 weeks, seems

the wait period is getting up to 2 months now from what I can see

from reading the forum...so the sooner the better.

In the 5 months since my surgery I have lost 2 dress sizes PAINLESSLY

(except for the first 30 days which are a challenge but necessary for

your stomach to totally heal before you can handle " real " food

again.) ...but your co-odinater can explain more about that to you

(you would have to go through the same thing were you to have it done

here in the USA anyway) It usually runs less than $8,000 including

all the tests, transportation, hotel accomodations and free checkups

and fills for the rest of your life!!!.

GO FOR IT GIRL!!! You won't be sorry.

Sincerely, Jeanie Uhlik dob 9/14/07 BMI then: 44.5 now: 38.

[Guest guest]

, No your ins. will not pay out of country. The cost is approx. $8,000 from Dr. Aceves in Mexicali. The hospital is one of the nicest I have ever been in and the care is superior to the USA---and the USA is good! Move ahead without fear with Dr. Aceves, he is competent, has a superb staff, you will have a private room that is beautiful.....By the way your insurance will cover its share only after you jump through about a year's worth of "hoops'' ...................and then they may turn you down anyway......by the time you qualify for your ins. to cover you (Maybe!!) you could have lost 90lbs with the identical band they use in the USA.....and Dr. Aceves has had the identical training

any US doctor gets and Dr. Aveces has done approximately 1400 of these.....Move ahead, there is no worry. This Dr. in Mexicali is as good as any US hospital and his staff is far better!!Jerry Gerovac New to this Hello! Please forgive me if this has been answered (probably a million times) I tried a search, but couldn't find

it. I am looking into getting the lap band done, but my insurance only covers $5000 I will be paying atleast 12,000 out of pocket so it was suggested to look at having it done out of country. I found this site and it looks like a wonderful and reputable program. Here are my questions. What is the approximate cost altogether to have a laproscopic band with no complications? Also, would my insurance still pay for a surgery in another country? Finally, have any of you travelled pretty far to have this done? Thanks for any help!

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

Very well said Jeanie!!!...I'd like to add also, that the day after your surgery, some feel good enough to even walk to the Mall that is 4 blocks down. It is good exercise to get that extra gas off and passes the day quicker. So that's something to think about also, that you can even go shopping the day after surgery!!!......lol OH yea, the van drivers name is Ernesto and he is the greatest...takes really good care of ya and gives you scenic information to and from the airport to Mexicali. He is really cool. You will really enjoy the whole experience. Tips that I may add: take gasX with ya, throat lozenges,, pantie liners ( in case ya have diarrhea ) and a heating pad, and some packets of broth for trip home if you are having to fly a

long ways. If you'd like to talk , you can call me anytime and I'll give you any information you may want to ask.

DOB

8/1/07

207/155/130

Re: New to this

Hi! I was banded on 9/14/07. I went to Dr. A. If you have even tried to get the insurance company to pay anything, have you looked into what their "prerequesites" (sp?) are??? Usually it takes a good 6 to 8 months just to qualify. You normally have to go to a Psychologist for a 6 hour evaluation (out of pocket), have a Heart treadmill test, go to their (the insurance companies qualified) nutritionist for at least 6 months. Be at least a BMI of 40. (I had 2 co-morbidities and was a 40, but after going to the nutritionist lost 25 pounds so I no longer qualified).. .you are looking into a long (and heart rendering) complicated list of "Hoops" you have to jump through in order to get their lousy 5 thousand bucks.Take my advise (and I AM SURE everyone on this forum will agree with me) skip all the pain and suffering, and go to DR. A. "DON'T PASS GO", (As in the game of Monopoly) and head directly to

Mexicali Mexico where they treat you like a queen (our hospitals are put to shame by the cleanlinest and kindness that this hospital has to offer). This was my 13th MAJOR surgery in my lifetime and the most pleasant. They pick you up at San Diego airport via company van, take you immediately in for all your tests all in the same day. You are put up at the Lucerna Hotel (4 star) where there are 4 different restaurants to choose from and have your "last meal". You have the surgery the very next day. If you bring along a mate (as I brought my hubby), they have a couch in each room so that your mate can stay with you at all times, by the way, the room is private with your own bathroom...did I reiterate that this is a HOSPITAL, not a clinic??? You stay there another full day so they can keep an eye on you and give you another x-ray to make sure the band in properly situated.Dr. A"s "team" consist of

3 nurses and a partner Doctor (Campos) an anestist, and a person who goes over all your history with you prior to the surgery. The nurses all speak excellent english and are the sweetest people, Lucy, (O.R. nurse) and (you will abosolutely love him!!!)Dr. A was quite concerned that my husband eat and he finally gave in by going to their nice little restaurant (not cafeteria) in the Hospital where I joined him right along with my push around IV. They have internet access (wi-fi) and an english speaking TV. The next morning they transport you back to San Diego where you fly back home, all complete in 4 days, no hassle, no fuss with beauracacy (another sp?). Do yourself a favor and immediately fill our the questionaire at DR. A's site, a co-ordinator will contact you within 24 hours and perhaps have a surgery date for you immediately! !! I see people are waiting longer and longer to

get in, It only took me 3 weeks, seems the wait period is getting up to 2 months now from what I can see from reading the forum...so the sooner the better.In the 5 months since my surgery I have lost 2 dress sizes PAINLESSLY (except for the first 30 days which are a challenge but necessary for your stomach to totally heal before you can handle "real" food again.) ...but your co-odinater can explain more about that to you (you would have to go through the same thing were you to have it done here in the USA anyway) It usually runs less than $8,000 including all the tests, transportation, hotel accomodations and free checkups and fills for the rest of your life!!!.GO FOR IT GIRL!!! You won't be sorry.Sincerely, Jeanie Uhlik dob 9/14/07 BMI then: 44.5 now: 38.

Never miss a thing. Make your homepage.

[Guest guest]

, First of all, welcome to our message board. If you read through many of the posts, you will find a wealth of information right at your finger tips. This is the best support group you will find, anywhere. Now, it is probably highly unlikely that your insurance will cover this procedure outside of the country. You would have to call them to be sure but I would be very surprised. As far as the cost, I paid approx. $8000 plus the cost of traveling. I live in Mobile, Alabama so it is about a 7 hour flight into San Diego. When I go to Mexicali (I go there for all aftercare) I pay for the fills at $80.00 each plus travel and accomodations. I usually stay for several days since I have to travel so far. As far as this being a reputable program, I would doubt that you could find a better, higher qualified group with which to work as the Dr.

Aceves team. They are an amazing group of people. I cannot tell you how glad I am that my insurance did not cover this procedure in the beginning because I would have missed out on making some absolutely amazing friendships. Please feel free to email me if you want to know anything specific. Jenni Currie DOB 2/23/06 247/145/135 Pre-Surgery/Goal/Current Weight 5 fills 3 unfills <lindaisnuts@...> wrote: Hello! Please forgive me if this has been answered (probably a million times) I tried a search, but couldn't find it.I am looking into getting the lap band done, but my insurance only covers $5000 I will be paying atleast 12,000 out of pocket so it was suggested to look at having it done out of country.I found this site and it looks like a wonderful and reputable program. Here are my questions.What is the approximate cost altogether to have a laproscopic band with no complications?Also, would my insurance still pay for a surgery in another country?Finally, have any of you travelled pretty far to have this done?Thanks for any help!

Never miss a thing. Make your homepage.

[Guest guest]

Highly recommend Dr. Aceves and his team.. I personally think the treatment and patient care there is far better than in the US

They come to your hotel to answer any questions you have before surgery, they are constantly there for you,

i dont think i could think of anything that wasnt good... my husband had the surgery and is very happy, and happy with the care there,

he hates going to the dr or to hospitals

Re: New to this

, No your ins. will not pay out of country. The cost is approx. $8,000 from Dr. Aceves in Mexicali. The hospital is one of the nicest I have ever been in and the care is superior to the USA---and the USA is good! Move ahead without fear with Dr. Aceves, he is competent, has a superb staff, you will have a private room that is beautiful.....By the way your insurance will cover its share only after you jump through about a year's worth of "hoops'' ...................and then they may turn you down anyway......by the time you qualify for your ins. to cover you (Maybe!!) you could have lost 90lbs with the identical band they use in the USA.....and Dr. Aceves has had the identical training any US doctor gets and Dr. Aveces has done approximately 1400 of these.....

Move ahead, there is no worry. This Dr. in Mexicali is as good as any US hospital and his staff is far better!!

Jerry Gerovac

New to this

Hello! Please forgive me if this has been answered (probably a million

times) I tried a search, but couldn't find it.

I am looking into getting the lap band done, but my insurance only

covers $5000 I will be paying atleast 12,000 out of pocket so it was

suggested to look at having it done out of country.

I found this site and it looks like a wonderful and reputable program.

Here are my questions.

What is the approximate cost altogether to have a laproscopic band

with no complications?

Also, would my insurance still pay for a surgery in another country?

Finally, have any of you travelled pretty far to have this done?

Thanks for any help!

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

Supercharge your AIM. Get the AIM toolbar for your browser.

[Guest guest]

Hi Werner. Just wanted to put my two cents-worth in here. I have had my device since 1996 and after the initial attitude adjustment have never regretted it. In fact, I have two implanted devices: a defibrillator/pacer on one side and a separate dual-chamber pacemaker (for the heart block between the upper and lower chambers) implanted in the other side. Other than being a bit of a hassle at the airport, I have no regrets in having both implants. In fact, I might not be alive without one or both of them. My defibrillator has only fired once in the eleven or so years I have had it, and I was very thankful that I had it then. When I first got the pacemaker, I felt a little "strange" and it scared me. Then upon contacting my EP and going in for a return visit, I found that the pacer was set too slow at the time and my "strange" feeling was like I was going to pass out, and I have an "unnatural fear" of losing consciousness or fainting. Once he made the adjustment to get it set at just the right speed (or whatever the correct medical term for that would be), everything was fine and has been since then. I have had my defibrillator for over ten years now and I don't even think of the "inconveniences" anymore. It could be much worse!It's Tax Time! Get tips, forms and advice on AOL Money Finance.

[Guest guest]

Hi Werner - When I really realize how serious my VT is....and stop trying to kid myself ...then I am really glad that I have the ICD. I don't like it and I am not so Pollyannish that I say it is my friend. But my cardiologist says I need it and if Blue Cross Blue Shield agreed to pay $60,000.00 to put it in my chest..there must be some validity to it. In fact, a lot of validity. I suggest that you see an electrophysiologist...a cardiologist who deals with irregular beating hearts...to get a second opinion. Go for it. Darlene P.S. I have never been shocked for two year...not bragging just thankful. Werner Mieny <werner@...> wrote: Hi guys, i am a 34 year old mail, i had a MI in 2001 and been living a pretty normal life till now.i recently started seeing a new cardiologist who has suggested very strongly that i go for a ICD as soon as possible because of the high risk factors i have...i have been trying to get some information from other doctors and i have been getting hugely contrasting views, from "there is nothing better" to , they dont work and cause endless problems... can any of you give me some feed back either way of your own experiences? should i do this?

[Guest guest]

i got my first bi-ventricular pacer/icd in 2004 and never had an incident until september when it fired 2 times. as it turns out, i now have a-fib and v-tach in addition to all of the other things that made it necessary for the unit. in october it was replaced with the newest medtronic bi-vent that is out. i have no doubt that i would not be here if not for the icd. i can't imagine that there is a doctor out there who would actually say that they aren't worth having because of problems, etc unless he is not in the business of saving lives.

evie

> Hi guys, i am a 34 year old mail, i had a MI in 2001 and been living a pretty normal life till > now.> > i recently started seeing a new cardiologist who has suggested very strongly that i go for a > ICD as soon as possible because of the high risk factors i have...> > i have been trying to get some information from other doctors and i have been getting > hugely contrasting views, from "there is nothing better" to , they dont work and cause > endless problems... > > can any of you give me some feed back either way of your own experiences? should i do this?>

[Guest guest]

Hi and welcome,

You will get a lot of good advice here. I

don’t want to scare you but I had some major problems with my ICD. You

can read my story at www.vtpatients.org/laura.html

if you want to. However, most people do well with them and they can be

livesaving. Why did you have an MI at such a young age?

From: [mailto: ] On Behalf Of Werner Mieny

Sent: Friday, March 07, 2008 1:25

AM

Subject: New to this

Hi guys, i am a 34 year old mail, i had a MI in 2001

and been living a pretty normal life till

now.

i recently started seeing a new cardiologist who has suggested very strongly

that i go for a

ICD as soon as possible because of the high risk factors i have...

i have been trying to get some information from other doctors and i have been

getting

hugely contrasting views, from " there is nothing better " to , they

dont work and cause

endless problems...

can any of you give me some feed back either way of your own experiences?

should i do this?

__________ NOD32 2932 (20080309) Information __________

This message was checked by NOD32 antivirus system.

http://www.eset.com

[Guest guest]

My husband had his ICD implanted in July, 2007. As far as we are concerned, it is the best thing that has happened to him since he was diagnosed with cardiomyopathy and congestive heart failure in March, 2007. He is 57 and they think that his heart problems were caused by a virus and/or genetics. He was very sick a year ago and we weren't even sure that he would live for a year. He is doing an amazing job. He lost 110 pounds and because if his ICD, he is able to walk on the treadmill for two hours a day. He is paced almost 100% of the time. We are hoping that his heart may be improving. He feels great. Today he walked 21 miles. A year ago he could barely walk up a flight of stairs. It also helps me to sleep through the night and not worry about him every minute that he is out of my sight. He has not been zapped yet, but we know that it could happen any time. He has had no problems other than

it hurts if it gets bumped. Goood luck, Mark and Bonnie YorkWerner Mieny <werner@...> wrote: Hi guys, i am a 34 year old mail, i had a MI in 2001 and been living a pretty normal life till now.i recently started seeing a new cardiologist who has suggested very strongly that i go for a ICD as soon as possible because of the high risk factors i have...i have been trying to get some information from other doctors and i have been getting hugely contrasting views, from "there is

nothing better" to , they dont work and cause endless problems... can any of you give me some feed back either way of your own experiences? should i do this?

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[Guest guest]

I can summarize my position easily... without wasting your time with a lot of details... if you are looking for just the numbers.I got ICD#1 December 27, 1994. I am now on #4... 3 Guidant implants and the current Saint Jude device.Each of the four have yanked me back from Death's Door at least once.In all, I have been zapped 10-times in nearly 14-years.... ALL appropriate "therapies."As of last November, I would have died TEN times without this marvelous little invention.Endless problems? Sorry... but in my book, any amount of hassles is better than being dead. I personally have not had a single significant problem from any of my implants... unlike most of the meds I take that also keep me ticking. I know, many of our readers have had one anxious episode after another... but none more than Stacie, who has gotten zapped 2500 times and had horrible treatment from time to time... such as the multiple errors she suffered during her last implant procedures, as well as the after effects. Still... she is still among us... always ready and willing to share her insights to help others. For that, I and most of our readers rejoice ad infinitum.Personally... (MY opinion only) anyone who is a candidate for ICD implant - documented by precision EP testing routines - is risking SCD by choosing to not get an ICD implant and not joining our club.. that is more like a family. And putting your life in greater jeopardy probably also means depriving those you care most about in the world of the companionship, support, etc. you give them now... way more prematurely.... forcing then to bid you a final farewell - long before it's necessary. I'd wager some really depend on you.While I am sure my wife openly admits I am often a pain in various body parts... she 's still glad all the research that went into this medical hardware has kept her from becoming a widow... ten times over. Glad also that I chose to have this thing installed inside me. Even if no one depends on your for anything, why

would you want to deprive yourself of just one more beautiful day on

this incredible planet? One more set of numbers: Meds alone prevent the death of 85% of people with a propensity for potentially lethal arrhythmia. An ICD will boost your likely survival from a deadly episode to 99% of the time. Again... just my opinion, but I really like the additional 14% reduction in risk.Stay well...Duffey>> Hi guys, i am a 34 year old mail, i had a MI in 2001 and been living a pretty normal life till > now.> > i recently started seeing a new cardiologist who has suggested very strongly that i go for a > ICD as soon as possible because of the high risk factors i have...> > i have been trying to get some information from other doctors and i have been getting > hugely contrasting views, from "there is nothing better" to , they dont work and cause > endless problems... > > can any of you give me some feed back either way of your own experiences? should i do this?>

[Guest guest]

Hi Guys

I would just like to thank everyone that replied to my post. I have seen the

doc again this

morning to ask some more questions and get more answers and i am feeling a lot

more

convinced that i should have it done.

I have an appointment for next Tuesday 18 March, they will be doing a fresh

angiogram

and we will then decide on the number of leads they will implant...

still pretty scared, but feel much better that there are others sharing my

situation

thanx

werner

>

> Hi guys, i am a 34 year old mail, i had a MI in 2001 and been living a pretty

normal life

till

> now.

>

> i recently started seeing a new cardiologist who has suggested very strongly

that i go

for a

> ICD as soon as possible because of the high risk factors i have...

>

> i have been trying to get some information from other doctors and i have been

getting

> hugely contrasting views, from " there is nothing better " to , they dont work

and cause

> endless problems...

>

> can any of you give me some feed back either way of your own experiences?

should i do

this?

>

[Guest guest]

A little late in my input. I listen a lot but don't contribute too much. There are so many more on this website worse off than myself, I feel very fortunate. I am Long QT patient, quirky heart rhythms that could lead to sudden death, or maybe not. The fact that there was a maybe in my life is what I could not handle. My quality of life had gone to the dogs, WOOF! I was fainting, weak spells, and short burst of VT. They decided to implant just in case I did not self terminate the bad rhythms. I have never had a second thought since procedure 2 years ago. Hope you can come to grips with it, I have never been shocked and maybe never will but the thought that it is tere if needed is enough to me. All it takes is one as you know to feel very lucky or very dead. I cose to opt to feel lucky! Good luck,

Judi

Re: New to this

Hi Guys

I would just like to thank everyone that replied to my post. I have seen the doc again this

morning to ask some more questions and get more answers and i am feeling a lot more

convinced that i should have it done.

I have an appointment for next Tuesday 18 March, they will be doing a fresh angiogram

and we will then decide on the number of leads they will implant...

still pretty scared, but feel much better that there are others sharing my situation

thanx

werner

>

> Hi guys, i am a 34 year old mail, i had a MI in 2001 and been living a pretty normal life

till

> now.

>

> i recently started seeing a new cardiologist who has suggested very strongly that i go

for a

> ICD as soon as possible because of the high risk factors i have...

>

> i have been trying to get some information from other doctors and i have been getting

> hugely contrasting views, from "there is nothing better" to , they dont work and cause

> endless problems...

>

> can any of you give me some feed back either way of your own experiences? should i do

this?

>

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[Guest guest]

Hang in there. That's what we have been doing for the last month. I know how you feel about the wait. My son also has a Tom in his left ear. At first we were so scared and didn't know what to expect but now with all the good advice and support we have gotten from this group we just want to get the thing out and start the recovery. We do know he may have to have another surgery maybe more than one but we can deal with that now that we are armed with knowledge. But hurry up. The waiting is the hardest part right now. Let us know when you know a date.

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

You know what, I just had surgery 2 weeks ago and my situation is

exactly like what yours sounds like. I was very apprehensive because

it's all new to me as well. But here I am 2 weeks later, my hearing

is returning, I'm healing up, and it's almost all behind me.

I had some bone erosion on my hearing bones as well as my skull, but

it looks like that's not going to be a problem for me. My ENT also

patched my eardrum and it's healing up just fine so far.

So don't be too worried. This is pretty routine stuff for

experienced c-toma doctors. This is a good forum, I got lots of

great advice here. Good luck and let us know how you do.

-Mark

>

> Aloha everyone,

>

> I was just diagnosed with a C-toma this week. Day after my 27th b-

day

> (great b-day present. I have had my CT scan and now I am just

waiting

> for the ENT to schedule surgery. Apparently my diagnosis is I have

a

> large C-toma that has partially eroded my ear bones and is doing

some

> fun other stuff as well. Anyways, I'm nervous, and anxious. I had

> tubes about 4 times when I was a kid and then never any issues

after

> that except the occasional infection. Now I got this issue and I'm

> naming it Toma. Tom for short. Now Tom is a bastard for just

hanging

> out in my left ear, but he really doesn't bother me much. My ear

just

> feels blocked, and I have some ringing, but not that much. I have

had

> no pain or dizziness, and my face and taste buds seem to be fine.

But

> now all I can do is wait until the ENT can schedule me. Due to the

> fact that this is Hawaii, I cannot have the op on the island I live

> on and I have to go over to Honolulu, and they are bringing in

> someone who does this all the time. Apparently this guy is from LA.

> So I'm looking for advice, positive words of encouragement,

whatever

> I can get. I mean damn this sucks! All I can do is wait and read

what

> I can, and as each day goes by I feel like its going to be worse

> until I have the surgery. HELP. Please.

>

[Guest guest]

Hang in there illzd! I am 33yrs old and had tubes put in my ears

back as a kid but no real problems as well. I went to see the

doctor when my ear clogged up and wouldn't get better and wouldn't

you know it I had a c-toma! I had my first surgery of any kind let

alone c-toma back in september. They removed two of my ear bones

and widened my ear canal. That surgery wasn't too bad but it did

suck a little because they had to go in behind my ear and drill

through the mastoid bone. Right after surgery I was a little sore

but not enough to take those big pain pills. After a few days I was

feeling a lot better. I just had my second surgery last week to

spot check to see if more c-toma grew and to put in my titainum

bone. So far so good. That surgery was a piece of cake. I was

eating regular food and walking around the day of the surgery. Now

I am just waiting to dissolve this gel packing in my ear to see if I

can actually hear again. C-toma does suck but its more of an

annoyance then anything else. Just make sure you follow the

instructions on caring for yourself and you will be good as gold.

Man I would love to be in Hawaii right now! Its 44 degrees here in

Indiana! What the crap:)

Dave

>

> Aloha everyone,

>

> I was just diagnosed with a C-toma this week. Day after my 27th b-

day

> (great b-day present. I have had my CT scan and now I am just

waiting

> for the ENT to schedule surgery. Apparently my diagnosis is I have

a

> large C-toma that has partially eroded my ear bones and is doing

some

> fun other stuff as well. Anyways, I'm nervous, and anxious. I had

> tubes about 4 times when I was a kid and then never any issues

after

> that except the occasional infection. Now I got this issue and I'm

> naming it Toma. Tom for short. Now Tom is a bastard for just

hanging

> out in my left ear, but he really doesn't bother me much. My ear

just

> feels blocked, and I have some ringing, but not that much. I have

had

> no pain or dizziness, and my face and taste buds seem to be fine.

But

> now all I can do is wait until the ENT can schedule me. Due to the

> fact that this is Hawaii, I cannot have the op on the island I

live

> on and I have to go over to Honolulu, and they are bringing in

> someone who does this all the time. Apparently this guy is from

LA.

> So I'm looking for advice, positive words of encouragement,

whatever

> I can get. I mean damn this sucks! All I can do is wait and read

what

> I can, and as each day goes by I feel like its going to be worse

> until I have the surgery. HELP. Please.

>

[Guest guest]

hello yes this is a pain i have a date for my c'toma on 9th may have a

pre-op on monday tests and stuff. i have not had a scan so don't know

what is going on in there my consultant said they just open me up and

take it from there! great. its my first surgery too don't know what to

expect i just hope my hearing remains the same being okayish and they

get rid of this damn ringing all the time in that ear i want to say

good luck to others having surgery imminently and we are all in this

together :-)

caroline

>

>

> >

> > Aloha everyone,

> >

> > I was just diagnosed with a C-toma this week. Day after my 27th b-

> day

> > (great b-day present. I have had my CT scan and now I am just

> waiting

> > for the ENT to schedule surgery. Apparently my diagnosis is I have

> a

> > large C-toma that has partially eroded my ear bones and is doing

> some

> > fun other stuff as well. Anyways, I'm nervous, and anxious. I had

> > tubes about 4 times when I was a kid and then never any issues

> after

> > that except the occasional infection. Now I got this issue and I'm

> > naming it Toma. Tom for short. Now Tom is a bastard for just

> hanging

> > out in my left ear, but he really doesn't bother me much. My ear

> just

> > feels blocked, and I have some ringing, but not that much. I have

> had

> > no pain or dizziness, and my face and taste buds seem to be fine.

> But

> > now all I can do is wait until the ENT can schedule me. Due to the

> > fact that this is Hawaii, I cannot have the op on the island I

> live

> > on and I have to go over to Honolulu, and they are bringing in

> > someone who does this all the time. Apparently this guy is from

> LA.

> > So I'm looking for advice, positive words of encouragement,

> whatever

> > I can get. I mean damn this sucks! All I can do is wait and read

> what

> > I can, and as each day goes by I feel like its going to be worse

> > until I have the surgery. HELP. Please.

> >

>

[Guest guest]

Hi Carol:

I'm sorry that you have started having seizures.    From personal experience I

can understand where you are coming from as well as your fears!

 

Knowledge is power when it comes to seizures, I believe!   Learn all you can

about what you have been diagnosed with and listen to your inner self.

 

Acceptance is hard......

 

J

From: carolcal2000 <carolcal2000@...>

Subject: [ ] New to this

Date: Monday, September 8, 2008, 12:23 AM

I recently had my 1st seizure in June and thought I had gotten a little

stability back when I

had a bad reaction to the medication and then very recently had another seizure.

I am

having such a hard time getting back into a positive state of mind and need to

know how to

deal with living with seizures and get back a normal life. I am also afraid of

being alone.