update

[Guest guest]

Did they repeat any testing. As a final comment I would do a trial of spiro to see how much that helps. A bit of a diagnositic test as well. ie if everything gets better then it is a mineraolocorticoid problem.There is no such thing as just hypertension of course. The is medical speak for we don't know what the hell is wrong with you.Keep us posted from time to time. Have you seen visited our sister group. bloodpressureline at ?On Feb 15, 2010, at 11:00 PM, cowdoc@... wrote:Talked with endo doc today and they don't think it is PA just hypertension. I just wanted to thank everybody for their help and information. Dana Sent from my Verizon Wireless BlackBerry

[Guest guest]

Well said! : ) At least we can laugh a lot. I will say that while I have a lot of fears about the unknowns, there are so many just stunningly beautiful moments and times along the way. The deeply touching things we've seen at our hospital have blown me away. The kindness of strangers has been astounding. I am definitely on the roller coaster, too, and I just have to laugh when our 2 year old throws up sand/dirt/little rocks in the air and they go down his t-shirt under his cast! I can't tie his arms down, and I won't be a mom who would never let him go outside to play- so we just get 'em out as best we can and so far, so good, he is just fine! Oh, one tip- for anyone who like to use the Cetaphil facial cleanser for spot cleaning the cast or t-shirt/undersweater- (it's also very good

for after a number 2 diaper change)- they are selling a no name brand at Target for 6 dollars and change- under 7 dollars. If you have Costco near you, you can also get the big brand name big pumps, 2 stuck back to back, for a good price- but Target is probably the best deal! It's in the facial cleanser section, right next to the Cetaphil.XOXO-Heidi, Bexon's Mommy, (2 and a half years old, in 6th cast from Salt Lake City Shriners, currently down from 61 degrees to 25 in cast)From: GiGi <jilian13@...>To:

infantile scoliosis treatment Sent: Sun, March 28, 2010 11:08:15 AMSubject: Update

Hope all are having a nice weekend. Made many phone calls this week, several sleepless nights. Was able to get an app't in Rochester on April 7th. Thrilled to get in so soon, terrified for the outcome. I'm hoping for the most conservative treatment possible. Can't even think about Emms needing surgery at some point.

Have been reading many of the posts on here and the resounding message is that this is a roller coaster ride - not a nice one either. An old, rickety coaster that will bang the bejesus out of ya. Highs, lows and some loop de loops in between but eventually the train will pull back in, the harness will come off, and we'll be free to enjoy the rest of the park ;0)

[Guest guest]

Well said! : ) At least we can laugh a lot. I will say that while I have a lot of fears about the unknowns, there are so many just stunningly beautiful moments and times along the way. The deeply touching things we've seen at our hospital have blown me away. The kindness of strangers has been astounding. I am definitely on the roller coaster, too, and I just have to laugh when our 2 year old throws up sand/dirt/little rocks in the air and they go down his t-shirt under his cast! I can't tie his arms down, and I won't be a mom who would never let him go outside to play- so we just get 'em out as best we can and so far, so good, he is just fine! Oh, one tip- for anyone who like to use the Cetaphil facial cleanser for spot cleaning the cast or t-shirt/undersweater- (it's also very good

for after a number 2 diaper change)- they are selling a no name brand at Target for 6 dollars and change- under 7 dollars. If you have Costco near you, you can also get the big brand name big pumps, 2 stuck back to back, for a good price- but Target is probably the best deal! It's in the facial cleanser section, right next to the Cetaphil.XOXO-Heidi, Bexon's Mommy, (2 and a half years old, in 6th cast from Salt Lake City Shriners, currently down from 61 degrees to 25 in cast)From: GiGi <jilian13@...>To:

infantile scoliosis treatment Sent: Sun, March 28, 2010 11:08:15 AMSubject: Update

Hope all are having a nice weekend. Made many phone calls this week, several sleepless nights. Was able to get an app't in Rochester on April 7th. Thrilled to get in so soon, terrified for the outcome. I'm hoping for the most conservative treatment possible. Can't even think about Emms needing surgery at some point.

Have been reading many of the posts on here and the resounding message is that this is a roller coaster ride - not a nice one either. An old, rickety coaster that will bang the bejesus out of ya. Highs, lows and some loop de loops in between but eventually the train will pull back in, the harness will come off, and we'll be free to enjoy the rest of the park ;0)

[Guest guest]

So glad you were able to get in to Rochester. I have heard wonderful things about that hosp.

I loved your metaphor too. It is a roller coaster ride but you get so used to it you don't even know you are on it anymore.. Good luck. Post when you can Joanmom to Hayden 339 degrees down from 62Cast number 4Treated at ish Rite Hospital Dallas, TX

From: GiGi <jilian13@...>infantile scoliosis treatment Sent: Sun, March 28, 2010 1:08:15 PMSubject: Update

Hope all are having a nice weekend. Made many phone calls this week, several sleepless nights. Was able to get an app't in Rochester on April 7th. Thrilled to get in so soon, terrified for the outcome. I'm hoping for the most conservative treatment possible. Can't even think about Emms needing surgery at some point. Have been reading many of the posts on here and the resounding message is that this is a roller coaster ride - not a nice one either. An old, rickety coaster that will bang the bejesus out of ya. Highs, lows and some loop de loops in between but eventually the train will pull back in, the harness will come off, and we'll be free to enjoy the rest of the park ;0)

[Guest guest]

Thanks Heidi, I love Cetaphil, I JUST bought last week a big huge one for full price.. Darn.. I will have to check Target next time. Thanks Joanmom to Hayden 339 degrees down from 62Cast number 4Treated at ish Rite Hospital Dallas, TX

From: NIck Guthe <nickguthe@...>infantile scoliosis treatment Sent: Sun, March 28, 2010 5:13:33 PMSubject: Re: Update

Well said! : ) At least we can laugh a lot. I will say that while I have a lot of fears about the unknowns, there are so many just stunningly beautiful moments and times along the way. The deeply touching things we've seen at our hospital have blown me away. The kindness of strangers has been astounding. I am definitely on the roller coaster, too, and I just have to laugh when our 2 year old throws up sand/dirt/little rocks in the air and they go down his t-shirt under his cast! I can't tie his arms down, and I won't be a mom who would never let him go outside to play- so we just get 'em out as best we can and so far, so good, he is just fine! Oh, one tip- for anyone who like to use the Cetaphil facial cleanser for spot cleaning the cast or t-shirt/undersweate r- (it's also very good for after a number 2 diaper change)- they are selling a no name brand at

Target for 6 dollars and change- under 7 dollars. If you have Costco near you, you can also get the big brand name big pumps, 2 stuck back to back, for a good price- but Target is probably the best deal! It's in the facial cleanser section, right next to the Cetaphil.

XOXO-Heidi, Bexon's Mommy, (2 and a half years old, in 6th cast from Salt Lake City Shriners, currently down from 61 degrees to 25 in cast)

From: GiGi <jilian13 (DOT) com>infantile scoliosis treatment @groups. comSent: Sun, March 28, 2010 11:08:15 AMSubject: [infantile_scoliosi s] Update

Hope all are having a nice weekend. Made many phone calls this week, several sleepless nights. Was able to get an app't in Rochester on April 7th. Thrilled to get in so soon, terrified for the outcome. I'm hoping for the most conservative treatment possible. Can't even think about Emms needing surgery at some point. Have been reading many of the posts on here and the resounding message is that this is a roller coaster ride - not a nice one either. An old, rickety coaster that will bang the bejesus out of ya. Highs, lows and some loop de loops in between but eventually the train will pull back in, the harness will come off, and we'll be free to enjoy the rest of the park ;0)

[Guest guest]

SO PROUD FOR YOU AND YOUR FAMILY!!!Your right, you just hold on to any positive sign and pray for the best. I hear you on the validation stuff! Again, BIG Congratulations!!!      Janet, Sage's mom, casted at Chicago

On Tue, Apr 20, 2010 at 10:19 PM, mamato3 <christenandpooks42@...> wrote:

 

Hello all,

Just wanted to share that got his 3rd cast yesterday and OUT of cast he is now at 24 (From original 35) and almost straight in cast!!! We cried tears of relief and gratitude and hugged our doctor we were so pysched. We needed this to validate and encourage us as the 2nd cast was only a 2 degree difference. As you all know, any sign of correction is a sign...it is hope..it is light...it is peace of mind...for now.

I am so grateful for this community...thank you for your encouragement and for your positive presence in our lives. I may not post often, but you are all so deeply and daily in my prayers.

Warmly,

Chrissy

Mama to (35 down to 24 out of cast; #3) Chgo, Shriners

[Guest guest]

Chrissy,That is awesome! YAY JACKSON!!! Heidi, Bexon's Mommy, (2 and a half years old, in 6th cast from Salt Lake City Shriners, currently down from 61 degrees to 25 in cast)From: mamato3 <christenandpooks42@...>infantile scoliosis treatment Sent: Tue, April 20, 2010 8:19:38 PMSubject: update

Hello all,

Just wanted to share that got his 3rd cast yesterday and OUT of cast he is now at 24 (From original 35) and almost straight in cast!!! We cried tears of relief and gratitude and hugged our doctor we were so pysched. We needed this to validate and encourage us as the 2nd cast was only a 2 degree difference. As you all know, any sign of correction is a sign...it is hope..it is light...it is peace of mind...for now.

I am so grateful for this community... thank you for your encouragement and for your positive presence in our lives. I may not post often, but you are all so deeply and daily in my prayers.

Warmly,

Chrissy

Mama to (35 down to 24 out of cast; #3) Chgo, Shriners

[Guest guest]

Chrissy,That is GREAT news!! I am so happy for little . And you!Thank you updating to let us know. Your news will surely encourage someone else too. TashaMommy of 5 year old twin boys- and Fort Worth, TexasSeries of 6 casts for 14 months. Brace 10 months 23hrs a day. Night bracing from July 08-present. is treated at Texas ish Rite Hospital.You can read 's story at....http://www.infantilescoliosis.org/stories.htmlFrom: mamato3 <christenandpooks42@...>infantile scoliosis treatment Sent: Tue, April 20, 2010 10:19:38 PMSubject: update

Hello all,

Just wanted to share that got his 3rd cast yesterday and OUT of cast he is now at 24 (From original 35) and almost straight in cast!!! We cried tears of relief and gratitude and hugged our doctor we were so pysched. We needed this to validate and encourage us as the 2nd cast was only a 2 degree difference. As you all know, any sign of correction is a sign...it is hope..it is light...it is peace of mind...for now.

I am so grateful for this community... thank you for your encouragement and for your positive presence in our lives. I may not post often, but you are all so deeply and daily in my prayers.

Warmly,

Chrissy

Mama to (35 down to 24 out of cast; #3) Chgo, Shriners

[Guest guest]

That's great! Do you have a link to a TV station website where we can view the story? I'd love to see it.~Noah 4 1/2 years old9 months of casting in SLC; 2 1/2 years of bracing; Currently treatment-free at 8*And Mariella 16 months old - resolved Infantile Scoliosis

infantile scoliosis treatment From: mindylee1@...Date: Mon, 7 Jun 2010 23:23:55 +0000Subject: Update

Hi all, I havent posted in a long time but I try to keep up on posts! I've been extremly busy with Marly who's 1 and 1/2 and Natalya whos 2 and 1/2! They are non-stop. Plus Marly's been having alot of issues along with the scoliosis, she was thorwing up every day, losing weight, had to see a pediatric GI. Then she had a vaginal protrusion and they didnt know if it was one og her organs (bladder, uterus, etc) so she had to see a pediatric urologist. Everything seems to be ok now, their just keeping an eye on everything. I've also been busy coordinating a benefit in honor of Marlycia, which took place yesterday. asked me to update everyone here on CAST.All the proceeds r going to Shriners in Philadelphia (where Marly is treated). I handed out ISOP brochures and explained what they did and how much of an impact has had on getting Mehta method casting here!! We raised $4000 and we were able to get live news coverage. The news aired it three times already since last night and I was able to explain the seriousness of PIS and how it affects these babies, the treatments, and how we need to spread awareness. I told them too many people know nothing about it (including the medical community)or dont know how life-threating it can be and how early treatment is the best. I made a huge poster with her pics in cast, xrays, after OR, etc and the news aired her x-rays and pics of her in cast so people can see with their own eyes what these babies bones look like. Hopefully with all the people at the benefit and it being on the news, this area will be better educated on it now and maybe someone elses baby will be helped!Talk to everyone soonMelindaMommy of Marlycia 17 mnths, Natalya 2.5 yrsScranton, PA wanted me to let everyone know that I

The New Busy think 9 to 5 is a cute idea. Combine multiple calendars with Hotmail. Get busy.

[Guest guest]

Its www.wnep.com but they dont have it on their website. They only put up certain stories. I called them to get a copy and they said they cant due to legal issues. I cant find it on their website.

My mother recorded it though so Im going to transfer it and I'll try to upload it to the computer

Melinda

Update

Hi all, I havent posted in a long time but I try to keep up on posts! I've been extremly busy with Marly who's 1 and 1/2 and Natalya whos 2 and 1/2! They are non-stop. Plus Marly's been having alot of issues along with the scoliosis, she was thorwing up every day, losing weight, had to see a pediatric GI. Then she had a vaginal protrusion and they didnt know if it was one og her organs (bladder, uterus, etc) so she had to see a pediatric urologist. Everything seems to be ok now, their just keeping an eye on everything. I've also been busy coordinating a benefit in honor of Marlycia, which took place yesterday. asked me to update everyone here on CAST.All the proceeds r going to Shriners in Philadelphia (where Marly is treated). I handed out ISOP brochures and explained what they did and how much of an impact has had on getting Mehta method casting here!! We raised $4000 and we were able to get live news coverage. The news aired it three times already since last night and I was able to explain the seriousness of PIS and how it affects these babies, the treatments, and how we need to spread awareness. I told them too many people know nothing about it (including the medical community)or dont know how life-threating it can be and how early treatment is the best. I made a huge poster with her pics in cast, xrays, after OR, etc and the news aired her x-rays and pics of her in cast so people can see with their own eyes what these babies bones look like. Hopefully with all the people at the benefit and it being on the news, this area will be better educated on it now and maybe someone elses baby will be helped!Talk to everyone soonMelindaMommy of Marlycia 17 mnths, Natalya 2.5 yrsScranton, PA wanted me to let everyone know that I

The New Busy think 9 to 5 is a cute idea. Combine multiple calendars with Hotmail. Get busy.

[Guest guest]

Melinda, I would try calling again. I believe all t.v. networks have to allow the ability to get a "transcript" of anything they aire on a local network. I could be wrong, but it makes no sense that the general public can record it, but they can't provide you a copy, I agree you might have to purchase the copy, but it should be available.

In looking at the site...

http://www.wnep.com/about/wnep-termsofservice,0,4860038.htmlstory

Requests to use Content for any purpose other than as permitted in these Terms of Service should be directed to ctcpermissions@.... In certain cases, you may be able to use individual stories that appear on WNEP.com through online functionality we have specifically designated (e.g., to e-mail a story to a friend or to purchase the rights to reproduce a story for other use). In such cases, we will tell you directly in the portion of the Content you may use or you will see a link in the Content itself.

You may be able to email at the above address and see if they can tell you if its available somewhere.

Jane

From: Melinda Lee <mindylee1@...>infantile scoliosis treatment Sent: Tue, June 8, 2010 10:19:53 AMSubject: Re: Update

Its www.wnep.com but they dont have it on their website. They only put up certain stories. I called them to get a copy and they said they cant due to legal issues. I cant find it on their website.

My mother recorded it though so Im going to transfer it and I'll try to upload it to the computer

Melinda

[infantile_scoliosi s] Update

Hi all, I havent posted in a long time but I try to keep up on posts! I've been extremly busy with Marly who's 1 and 1/2 and Natalya whos 2 and 1/2! They are non-stop. Plus Marly's been having alot of issues along with the scoliosis, she was thorwing up every day, losing weight, had to see a pediatric GI. Then she had a vaginal protrusion and they didnt know if it was one og her organs (bladder, uterus, etc) so she had to see a pediatric urologist. Everything seems to be ok now, their just keeping an eye on everything. I've also been busy coordinating a benefit in honor of Marlycia, which took place yesterday. asked me to update everyone here on CAST.All the proceeds r going to Shriners in Philadelphia (where Marly is treated). I handed out ISOP brochures and explained what they did and how much of an impact has had on getting Mehta method casting here!! We raised $4000 and we were able to get live news

coverage. The news aired it three times already since last night and I was able to explain the seriousness of PIS and how it affects these babies, the treatments, and how we need to spread awareness. I told them too many people know nothing about it (including the medical community)or dont know how life-threating it can be and how early treatment is the best. I made a huge poster with her pics in cast, xrays, after OR, etc and the news aired her x-rays and pics of her in cast so people can see with their own eyes what these babies bones look like. Hopefully with all the people at the benefit and it being on the news, this area will be better educated on it now and maybe someone elses baby will be helped!Talk to everyone soonMelindaMommy of Marlycia 17 mnths, Natalya 2.5 yrsScranton, PA wanted me to let everyone know that I

The New Busy think 9 to 5 is a cute idea. Combine multiple calendars with Hotmail. Get busy.

[Guest guest]



Thanks for checking that. I emailed them to see how I can get a copy. It didnt make sense to me either. I will let everyone know as soon as I have it.

Melinda

[infantile_scoliosi s] Update

Hi all, I havent posted in a long time but I try to keep up on posts! I've been extremly busy with Marly who's 1 and 1/2 and Natalya whos 2 and 1/2! They are non-stop. Plus Marly's been having alot of issues along with the scoliosis, she was thorwing up every day, losing weight, had to see a pediatric GI. Then she had a vaginal protrusion and they didnt know if it was one og her organs (bladder, uterus, etc) so she had to see a pediatric urologist. Everything seems to be ok now, their just keeping an eye on everything. I've also been busy coordinating a benefit in honor of Marlycia, which took place yesterday. asked me to update everyone here on CAST.All the proceeds r going to Shriners in Philadelphia (where Marly is treated). I handed out ISOP brochures and explained what they did and how much of an impact has had on getting Mehta method casting here!! We raised $4000 and we were able to get live news coverage. The news aired it three times already since last night and I was able to explain the seriousness of PIS and how it affects these babies, the treatments, and how we need to spread awareness. I told them too many people know nothing about it (including the medical community)or dont know how life-threating it can be and how early treatment is the best. I made a huge poster with her pics in cast, xrays, after OR, etc and the news aired her x-rays and pics of her in cast so people can see with their own eyes what these babies bones look like. Hopefully with all the people at the benefit and it being on the news, this area will be better educated on it now and maybe someone elses baby will be helped!Talk to everyone soonMelindaMommy of Marlycia 17 mnths, Natalya 2.5 yrsScranton, PA wanted me to let everyone know that I

The New Busy think 9 to 5 is a cute idea. Combine multiple calendars with Hotmail. Get busy.

[Guest guest]

WOW, that is awesome Melinda. Thank you for doing all this and going out of your way to get ISOP heard! I know I truly appreciate it!ShaunaMother of Hadley(2 1/2 years). Hadley started with a 74 degree curve and 8 casts later is down to 12 degrees and is now in her first brace. *With God, all things are possible* Mathew 19:26From: melindalee95 <mindylee1@...>Subject: Updateinfantile scoliosis treatment Date: Monday, June 7,

2010, 6:23 PM

Hi all,

I havent posted in a long time but I try to keep up on posts! I've been extremly busy with Marly who's 1 and 1/2 and Natalya whos 2 and 1/2! They are non-stop. Plus Marly's been having alot of issues along with the scoliosis, she was thorwing up every day, losing weight, had to see a pediatric GI. Then she had a vaginal protrusion and they didnt know if it was one og her organs (bladder, uterus, etc) so she had to see a pediatric urologist. Everything seems to be ok now, their just keeping an eye on everything. I've also been busy coordinating a benefit in honor of Marlycia, which took place yesterday.

asked me to update everyone here on CAST.

All the proceeds r going to Shriners in Philadelphia (where Marly is treated). I handed out ISOP brochures and explained what they did and how much of an impact has had on getting Mehta method casting here!! We raised $4000 and we were able to get live news coverage. The news aired it three times already since last night and I was able to explain the seriousness of PIS and how it affects these babies, the treatments, and how we need to spread awareness. I told them too many people know nothing about it (including the medical community)or dont know how life-threating it can be and how early treatment is the best. I made a huge poster with her pics in cast, xrays, after OR, etc and the news aired her x-rays and pics of her in cast so people can see with their own eyes what these babies bones look like. Hopefully with all the people at the benefit and it being on the news, this area will be better educated on it now and maybe someone elses baby will

be helped!

Talk to everyone soon

Melinda

Mommy of Marlycia 17 mnths, Natalya 2.5 yrs

Scranton, PA

wanted me to let everyone know that I

[Guest guest]

This is great news Melinda! You did a wonderful thing and $4000, way to go! Patty, mom of Isabella, 2 years old, in 5th scoli cast (Rochester) & now an arm cast & mom to & EvanFrom: melindalee95 <mindylee1@...>infantile scoliosis treatment Sent: Mon, June 7, 2010 7:23:55

PMSubject: Update

Hi all,

I havent posted in a long time but I try to keep up on posts! I've been extremly busy with Marly who's 1 and 1/2 and Natalya whos 2 and 1/2! They are non-stop. Plus Marly's been having alot of issues along with the scoliosis, she was thorwing up every day, losing weight, had to see a pediatric GI. Then she had a vaginal protrusion and they didnt know if it was one og her organs (bladder, uterus, etc) so she had to see a pediatric urologist. Everything seems to be ok now, their just keeping an eye on everything. I've also been busy coordinating a benefit in honor of Marlycia, which took place yesterday.

asked me to update everyone here on CAST.

All the proceeds r going to Shriners in Philadelphia (where Marly is treated). I handed out ISOP brochures and explained what they did and how much of an impact has had on getting Mehta method casting here!! We raised $4000 and we were able to get live news coverage. The news aired it three times already since last night and I was able to explain the seriousness of PIS and how it affects these babies, the treatments, and how we need to spread awareness. I told them too many people know nothing about it (including the medical community)or dont know how life-threating it can be and how early treatment is the best. I made a huge poster with her pics in cast, xrays, after OR, etc and the news aired her x-rays and pics of her in cast so people can see with their own eyes what these babies bones look like. Hopefully with all the people at the benefit and it being on the news, this area will be better educated on it now and maybe someone elses baby will

be helped!

Talk to everyone soon

Melinda

Mommy of Marlycia 17 mnths, Natalya 2.5 yrs

Scranton, PA

wanted me to let everyone know that I

[Guest guest]

That is awesome, Melinda!!

I recently worked on a Chinese Auction for the local Kismet Shriners

transportation unit and we raised over $3,500. I found that as important as

raising the money was the fact that as we went around soliciting donations from

local businesses, we also took that opportunity to raise awareness. It sounds

like you did a great job with the news coverage, etc. in spreading the word and

educating many people about PIS, Shriners, etc.

Great job!!!

I look forward to hearing from you and to working together.

>

> This is great news Melinda! You did a wonderful thing and $4000, way to go!

> Patty, mom of Isabella, 2 years old, in 5th scoli cast (Rochester) & now an

arm cast & mom to & Evan

>

>

>

>

> ________________________________

> From: melindalee95 <mindylee1@...>

> infantile scoliosis treatment

> Sent: Mon, June 7, 2010 7:23:55 PM

> Subject: Update

>

>

> Hi all,

> I havent posted in a long time but I try to keep up on posts! I've been

extremly busy with Marly who's 1 and 1/2 and Natalya whos 2 and 1/2! They are

non-stop. Plus Marly's been having alot of issues along with the scoliosis, she

was thorwing up every day, losing weight, had to see a pediatric GI. Then she

had a vaginal protrusion and they didnt know if it was one og her organs

(bladder, uterus, etc) so she had to see a pediatric urologist. Everything seems

to be ok now, their just keeping an eye on everything. I've also been busy

coordinating a benefit in honor of Marlycia, which took place yesterday.

> asked me to update everyone here on CAST.

> All the proceeds r going to Shriners in Philadelphia (where Marly is treated).

I handed out ISOP brochures and explained what they did and how much of an

impact has had on getting Mehta method casting here!! We raised $4000

and we were able to get live news coverage. The news aired it three times

already since last night and I was able to explain the seriousness of PIS and

how it affects these babies, the treatments, and how we need to spread

awareness. I told them too many people know nothing about it (including the

medical community)or dont know how life-threating it can be and how early

treatment is the best. I made a huge poster with her pics in cast, xrays, after

OR, etc and the news aired her x-rays and pics of her in cast so people can see

with their own eyes what these babies bones look like. Hopefully with all the

people at the benefit and it being on the news, this area will be better

educated on it now and maybe someone elses baby will

> be helped!

> Talk to everyone soon

>

> Melinda

> Mommy of Marlycia 17 mnths, Natalya 2.5 yrs

> Scranton, PA

>

> wanted me to let everyone know that I

>

[Guest guest]

That is awesome, Melinda!!

I recently worked on a Chinese Auction for the local Kismet Shriners

transportation unit and we raised over $3,500. I found that as important as

raising the money was the fact that as we went around soliciting donations from

local businesses, we also took that opportunity to raise awareness. It sounds

like you did a great job with the news coverage, etc. in spreading the word and

educating many people about PIS, Shriners, etc.

Great job!!!

I look forward to hearing from you and to working together.

>

> This is great news Melinda! You did a wonderful thing and $4000, way to go!

> Patty, mom of Isabella, 2 years old, in 5th scoli cast (Rochester) & now an

arm cast & mom to & Evan

>

>

>

>

> ________________________________

> From: melindalee95 <mindylee1@...>

> infantile scoliosis treatment

> Sent: Mon, June 7, 2010 7:23:55 PM

> Subject: Update

>

>

> Hi all,

> I havent posted in a long time but I try to keep up on posts! I've been

extremly busy with Marly who's 1 and 1/2 and Natalya whos 2 and 1/2! They are

non-stop. Plus Marly's been having alot of issues along with the scoliosis, she

was thorwing up every day, losing weight, had to see a pediatric GI. Then she

had a vaginal protrusion and they didnt know if it was one og her organs

(bladder, uterus, etc) so she had to see a pediatric urologist. Everything seems

to be ok now, their just keeping an eye on everything. I've also been busy

coordinating a benefit in honor of Marlycia, which took place yesterday.

> asked me to update everyone here on CAST.

> All the proceeds r going to Shriners in Philadelphia (where Marly is treated).

I handed out ISOP brochures and explained what they did and how much of an

impact has had on getting Mehta method casting here!! We raised $4000

and we were able to get live news coverage. The news aired it three times

already since last night and I was able to explain the seriousness of PIS and

how it affects these babies, the treatments, and how we need to spread

awareness. I told them too many people know nothing about it (including the

medical community)or dont know how life-threating it can be and how early

treatment is the best. I made a huge poster with her pics in cast, xrays, after

OR, etc and the news aired her x-rays and pics of her in cast so people can see

with their own eyes what these babies bones look like. Hopefully with all the

people at the benefit and it being on the news, this area will be better

educated on it now and maybe someone elses baby will

> be helped!

> Talk to everyone soon

>

> Melinda

> Mommy of Marlycia 17 mnths, Natalya 2.5 yrs

> Scranton, PA

>

> wanted me to let everyone know that I

>

[Guest guest]

That is awesome, Melinda!!

I recently worked on a Chinese Auction for the local Kismet Shriners

transportation unit and we raised over $3,500. I found that as important as

raising the money was the fact that as we went around soliciting donations from

local businesses, we also took that opportunity to raise awareness. It sounds

like you did a great job with the news coverage, etc. in spreading the word and

educating many people about PIS, Shriners, etc.

Great job!!!

I look forward to hearing from you and to working together.

>

> This is great news Melinda! You did a wonderful thing and $4000, way to go!

> Patty, mom of Isabella, 2 years old, in 5th scoli cast (Rochester) & now an

arm cast & mom to & Evan

>

>

>

>

> ________________________________

> From: melindalee95 <mindylee1@...>

> infantile scoliosis treatment

> Sent: Mon, June 7, 2010 7:23:55 PM

> Subject: Update

>

>

> Hi all,

> I havent posted in a long time but I try to keep up on posts! I've been

extremly busy with Marly who's 1 and 1/2 and Natalya whos 2 and 1/2! They are

non-stop. Plus Marly's been having alot of issues along with the scoliosis, she

was thorwing up every day, losing weight, had to see a pediatric GI. Then she

had a vaginal protrusion and they didnt know if it was one og her organs

(bladder, uterus, etc) so she had to see a pediatric urologist. Everything seems

to be ok now, their just keeping an eye on everything. I've also been busy

coordinating a benefit in honor of Marlycia, which took place yesterday.

> asked me to update everyone here on CAST.

> All the proceeds r going to Shriners in Philadelphia (where Marly is treated).

I handed out ISOP brochures and explained what they did and how much of an

impact has had on getting Mehta method casting here!! We raised $4000

and we were able to get live news coverage. The news aired it three times

already since last night and I was able to explain the seriousness of PIS and

how it affects these babies, the treatments, and how we need to spread

awareness. I told them too many people know nothing about it (including the

medical community)or dont know how life-threating it can be and how early

treatment is the best. I made a huge poster with her pics in cast, xrays, after

OR, etc and the news aired her x-rays and pics of her in cast so people can see

with their own eyes what these babies bones look like. Hopefully with all the

people at the benefit and it being on the news, this area will be better

educated on it now and maybe someone elses baby will

> be helped!

> Talk to everyone soon

>

> Melinda

> Mommy of Marlycia 17 mnths, Natalya 2.5 yrs

> Scranton, PA

>

> wanted me to let everyone know that I

>

[Guest guest]

You and your family, like all service families, deserve our full support.

Your sacrifices and all you must deal with does not go unnoticed by most of

us. Sounds as though you are in control, though.

Hugs and prayers,

granny

On Mon, Oct 3, 2011 at 12:09 AM, Kiersten <kiersten5560@...> wrote:

> **

>

>

>

>

> Hello to both groups.

>

> I am so far behind in updating and I am beat... I need to be in bed. I

> just wanted to tell you that school is going so much better here at Fort

> Bragg, NC for Alden. He is 9, I kept him in grade 2. He is fully included

> in the regular classroom at this grade, he goes to the regular SpecEd

> classroom for LA/Math for 1.5 hours 4 days a week. This is not the

> exclusion room but the Spec Ed classroom with all sorts of non-disabled

> children and disabled children who just need some more help. I explained my

> reasoning for inclusion, my justification for keeping Alden out of the

> exclusion room, and they all really " get it " . Alden also goes to the

> Kindergarten classroom at the end of the day when the entire school has a

> short period for reinforcements (cannot remember if this is the actual term

> they use but that is the general idea). This period is more " hands on "

> reinforcement for what they are learning... be it reading or mathematics,

> but with fun,

> hands on activities that all the children enjoy . He is thriving in this

> more inclusive, " meeting him where he is " type of atmosphere. I couldn't be

> happier with the attitudes of the team.

>

> He was just voted Star Citizen of the month by his peers in Grade 2. What

> an honor! He is well-liked by his peers, disabled and non-disabled alike.

> This is how it should be! He has no discipline problems at all and I have

> had nothing but wonderful feedback plus a happy little boy. He is probably

> happier at school right now than he is at home, as he misses his dad

> terribly!

>

> Now if I could just get some sleep! I am going this alone, as my husband

> is deployed in the Army for a year, and I also have the Freshman in H.S. and

> 7th grader at the Middle School to deal with. Both girls, you can just

> imagine the hormonal imbalances going on around here. Seriously, we are all

> depressed what with all of the work we are doing, a new place, haven't

> really found our niche yet nor a church for sure... the oldest hates her

> school (mostly the uniforms) and is feeling stressed and my middle child

> thinks we are all off our rockers... but we are hanging in there and we do

> support one another during these stressful times. Both girls, with all of

> their complaints, made A-B Honor roll so they must be learning something.

> I think that the oldest has had a rude awakening at how far behind El Paso,

> TX really was... not only in academics but also in her orchestra. She is

> feeling conflicted as to whether she wants to continue now and I know that

> this move, tornado trauma, school changes, dad leaving... it has all been

> especially difficult for both of my girls.

>

> I am sorry it has been difficult for me to participate much. Seriously, I

> feel so blessed yet at the same time... I am weary.

>

> Thanks for understanding and many blessings to all of you! Kiersten

>

>

[Guest guest]

Barb, I totally agree with your assessment and decision as long as you keep a

close eye on adverse side effects! I was well controlled on 25mg bid but

developed gynecomastia early. No recommendation from anyone to change because

it " was not painful " . My PCP was estatic and not willing to change anything

until I developed 6 bumps in my rt. breast and she had to convince me that I was

going to Boston (400+ miles R/T) for a mammogram! I considered Eplerenone but

it took 3 trys to get it approved by the VA. I did a lot of research and found

enough unanswered questions and the fact that there was limited research and

finlly decided now was the time to persue an AVS and know all my options!

As a postmenopusal female many of my concerns will not apply. I do have an

outstanding question with my Psyco Staff regarding how it might affect MDD

treatment. (There is apprently an effect on gene CYP11B1 and CYP11B2, cortisol

and androgen, because they are neighbors on the channel. You surely know more

about it than I!)

- 65 yo super ob., fastidious male - 12mm X 13mm rt. a.adnoma with

previous rt. flank pain. Treating with DASH. Stats w/o meds = BP 175/90 HR 59

BS 125. D/C Spironolactone 12/20/2011 due to adverse SX.

Other Issues/Opportunities: OSA w Bi-Pap settings 13/19, DM2, Gynecomastia, MDD

and PTSD.

Meds: Duloxetine hcl 80 MG, Metoprolol Tartrate 200 MG, AmlodipineBesylate

5mg, 81mg aspirin and Metformin 2000MG. Started washing Spironolactone 12/20/11

to prepare for AVS.

>

> Briefly, my adrenal history includes a right adenoma dx'd in 2000 and a left

adenoma dx'd in 2009 and drug-resistant HTN for 25 years. My right renal artery

is 70% stenosed (US dx) and the right kidney is atrophic. I had some basic lab

work done 2 weeks ago. Aldosterone was 25 (high). Renin 9.3 (high normal).

Started Spiro 25mg daily after labs were drawn. I have been on the Spiro for 2

weeks now. After one dose, the brain fog lifted, my lungs were much more clear,

the trace LE peripheral edema started to diminish and my blood pressure began to

decrease.

>

> The second week on Spiro, I felt generally horrible and my BPs were improving

but not good. At the end of the second week, BP normalizing and K+ maintained on

20mEq BID (had been taking 40 BID and supplementing when the low K+ PVCs cycled

in - usually 160mEq over 24 hrs). The sum: I am feeling much better.

>

> I was referred to endo. Saw him today. Super doc with a great big brain. He

says there is so much going on with me, now and historically, he is not sure if

it is primary or secondary aldosteronism because of the renal artery stenosis or

the long-term NSAID therapy (800mg BID for the issues with my lumbar vertebrae

and left hip). Based on the numbers and diagnostics, he is leaning toward

secondary. He ordered labs to check for Pheo, Cushing's, etc., and I will see

him in one month. He also wants a repeat CT because the last one was 3 years

ago. I won't do that until Medicare kicks in July 1. He's okay with that.

>

> He said it was up to me if I wanted to purge the drugs, do a salt loading and

then retest. He also said he would refer me to a university setting for an AVS

if I wanted a definitive diagnosis. The way I view it... I am 65, retired, and

Spiro is working. Kind of a no brainer.

>

> Any thoughts?

>

> Barb

>

[Guest guest]

, The point of my other post was that maybe we should tone down stressing the "adverse side effects" of spiro because not everyone gets them. If I were a new member of the group and read some of the posts on spiro there is no way I would take it, although I am one of the persons that have no problems with it. I could not tolerate Inspra. Several years ago the endo I was going to at the time insisted I try it although I was having no problems with spiro. I had a raging headache for one month that never went away so back on spiro I went. Some people may have insurance that won't pay for Inspra and can't afford to pay for it themselves and have no choice of medications, others may have problems with Inspra. Auto-suggestion is very strong

in some people. I'm from the time fram when nurses could give placebos for pain if they felt it was warranted. More than 50% of the people I gave them to had miraculous pain relief from 2 ml of normal saline IM and a "this is a very strong pain medication, it should take away your pain and make you sleepy in just a few minutes." Maybe it would be better not to stress possible adverse effects of spiro (every drug has them) and let each person find out whether they will have side effects from it or not. Just sayin'...... From: <jclark24p@...> hyperaldosteronism Sent: Thursday, February 2, 2012 7:15 PM Subject: Re: Update Barb, I totally agree with your assessment and decision as long as you keep a close eye on adverse side effects! I was well controlled on 25mg bid but developed gynecomastia early. No recommendation from anyone to change because it "was not painful". My PCP was estatic and not willing to change anything until I developed 6 bumps in my rt. breast and she had to convince me that I was going to Boston (400+ miles R/T) for a mammogram! I considered Eplerenone but it took 3 trys to get it

approved by the VA. I did a lot of research and found enough unanswered questions and the fact that there was limited research and finlly decided now was the time to persue an AVS and know all my options! As a postmenopusal female many of my concerns will not apply. I do have an outstanding question with my Psyco Staff regarding how it might affect MDD treatment. (There is apprently an effect on gene CYP11B1 and CYP11B2, cortisol and androgen, because they are neighbors on the channel. You surely know more about it than I!) - 65 yo super ob., fastidious male - 12mm X 13mm rt. a.adnoma with previous rt. flank pain. Treating with DASH. Stats w/o meds = BP 175/90 HR 59 BS 125. D/C Spironolactone 12/20/2011 due to adverse SX.Other Issues/Opportunities: OSA w Bi-Pap settings 13/19, DM2, Gynecomastia, MDD and PTSD.Meds: Duloxetine hcl 80 MG, Metoprolol Tartrate 200

MG, AmlodipineBesylate 5mg, 81mg aspirin and Metformin 2000MG. Started washing Spironolactone 12/20/11 to prepare for AVS. >> Briefly, my adrenal history includes a right adenoma dx'd in 2000 and a left adenoma dx'd in 2009 and drug-resistant HTN for 25 years. My right renal artery is 70% stenosed (US dx) and the right kidney is atrophic. I had some basic lab work done 2 weeks ago. Aldosterone was 25 (high). Renin 9.3 (high normal). Started Spiro 25mg daily after labs were drawn. I have been on the Spiro for 2 weeks now. After one dose, the brain fog lifted, my lungs were much more clear, the trace LE peripheral edema started to diminish and my blood pressure began to decrease. > > The second

week on Spiro, I felt generally horrible and my BPs were improving but not good. At the end of the second week, BP normalizing and K+ maintained on 20mEq BID (had been taking 40 BID and supplementing when the low K+ PVCs cycled in - usually 160mEq over 24 hrs). The sum: I am feeling much better.> > I was referred to endo. Saw him today. Super doc with a great big brain. He says there is so much going on with me, now and historically, he is not sure if it is primary or secondary aldosteronism because of the renal artery stenosis or the long-term NSAID therapy (800mg BID for the issues with my lumbar vertebrae and left hip). Based on the numbers and diagnostics, he is leaning toward secondary. He ordered labs to check for Pheo, Cushing's, etc., and I will see him in one month. He also wants a repeat CT because the last one was 3 years ago. I won't do that until Medicare kicks in July 1. He's okay with that.> > He said it was up

to me if I wanted to purge the drugs, do a salt loading and then retest. He also said he would refer me to a university setting for an AVS if I wanted a definitive diagnosis. The way I view it... I am 65, retired, and Spiro is working. Kind of a no brainer. > > Any thoughts?> > Barb>------------------------------------

[Guest guest]

a, I kind of agree and disagree. As a nurse, don't you think

more patients should be aware of their side effects. Like the pt who

comes to the Er with a pulse of 30 and still taking his beta

blockers or his digoxin? Or how about the ones that come in with

repeated glucose < 60 and continues to take his metformin or

glucophage?

What if a pt. was prescribed Imdur and he wasn't warned about the

bad headaches- which actually means it is working?

I have a better one- the ppl who weren't warned about Ace Inhibitors

and angioedema and they come into the ER thinking they ate something

bad. Or the pt coming in with GI bleeding and still taking their ASA

and NSAIDS and on and on.

I always, always, always warn/tell pt's about side effects/adverse

side effects. Some side effects can be fatal. I have never had

anyone say they won't take a med cause I told

them about the side effects. In fact, most thank me.

Phyllis

On 2/2/2012 8:17 PM, a Hall wrote:

,

The point of my other post was that maybe we

should tone down stressing the "adverse side effects"

of spiro because not everyone gets them. If I were a

new member of the group and read some of the posts on

spiro there is no way I would take it, although I am

one of the persons that have no problems with it. I

could not tolerate Inspra. Several years ago the endo

I was going to at the time insisted I try it although

I was having no problems with spiro. I had a raging

headache for one month that never went away so back on

spiro I went. Some people may have insurance

that won't pay for Inspra and can't afford to pay for

it themselves and have no choice of medications,

others may have problems with Inspra. Auto-suggestion

is very strong in some people. I'm from the time

fram when nurses could give placebos for pain if they

felt it was warranted. More than 50% of the people I

gave them to had miraculous pain relief from 2 ml of

normal saline IM and a "this is a very strong pain

medication, it should take away your pain and make you

sleepy in just a few minutes." Maybe it would be

better not to stress possible adverse effects of spiro

(every drug has them) and let each person find out

whether they will have side effects from it or not.

Just sayin'......

From:

<jclark24p@...>

To:

hyperaldosteronism

Sent:

Thursday, February 2, 2012 7:15 PM

Subject:

Re: Update

Barb, I totally agree with your assessment and

decision as long as you keep a close eye on adverse

side effects! I was well controlled on 25mg bid but

developed gynecomastia early. No recommendation from

anyone to change because it "was not painful". My PCP

was estatic and not willing to change anything until I

developed 6 bumps in my rt. breast and she had to

convince me that I was going to Boston (400+ miles

R/T) for a mammogram! I considered Eplerenone but it

took 3 trys to get it approved by the VA. I did a lot

of research and found enough unanswered questions and

the fact that there was limited research and finlly

decided now was the time to persue an AVS and know all

my options!

As a postmenopusal female many of my concerns will not

apply. I do have an outstanding question with my

Psyco Staff regarding how it might affect MDD

treatment. (There is apprently an effect on gene

CYP11B1 and CYP11B2, cortisol and androgen, because

they are neighbors on the channel. You surely know

more about it than I!)

- 65 yo super ob., fastidious male - 12mm X 13mm

rt. a.adnoma with previous rt. flank pain. Treating

with DASH. Stats w/o meds = BP 175/90 HR 59 BS 125.

D/C Spironolactone 12/20/2011 due to adverse SX.

Other Issues/Opportunities: OSA w Bi-Pap settings

13/19, DM2, Gynecomastia, MDD and PTSD.

Meds: Duloxetine hcl 80 MG, Metoprolol Tartrate 200

MG, AmlodipineBesylate 5mg, 81mg aspirin and

Metformin 2000MG. Started washing Spironolactone

12/20/11 to prepare for AVS.

>

> Briefly, my adrenal history includes a right

adenoma dx'd in 2000 and a left adenoma dx'd in 2009

and drug-resistant HTN for 25 years. My right renal

artery is 70% stenosed (US dx) and the right kidney is

atrophic. I had some basic lab work done 2 weeks ago.

Aldosterone was 25 (high). Renin 9.3 (high normal).

Started Spiro 25mg daily after labs were drawn. I have

been on the Spiro for 2 weeks now. After one dose, the

brain fog lifted, my lungs were much more clear, the

trace LE peripheral edema started to diminish and my

blood pressure began to decrease.

>

> The second week on Spiro, I felt generally

horrible and my BPs were improving but not good. At

the end of the second week, BP normalizing and K+

maintained on 20mEq BID (had been taking 40 BID and

supplementing when the low K+ PVCs cycled in - usually

160mEq over 24 hrs). The sum: I am feeling much

better.

>

> I was referred to endo. Saw him today. Super doc

with a great big brain. He says there is so much going

on with me, now and historically, he is not sure if it

is primary or secondary aldosteronism because of the

renal artery stenosis or the long-term NSAID therapy

(800mg BID for the issues with my lumbar vertebrae and

left hip). Based on the numbers and diagnostics, he is

leaning toward secondary. He ordered labs to check for

Pheo, Cushing's, etc., and I will see him in one

month. He also wants a repeat CT because the last one

was 3 years ago. I won't do that until Medicare kicks

in July 1. He's okay with that.

>

> He said it was up to me if I wanted to purge the

drugs, do a salt loading and then retest. He also said

he would refer me to a university setting for an AVS

if I wanted a definitive diagnosis. The way I view

it... I am 65, retired, and Spiro is working. Kind of

a no brainer.

>

> Any thoughts?

>

> Barb

>

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

[Guest guest]

I disagree and had you told me what androgen was and the possible side effects I

would have known what was causing my breasts, I might have had a hint as to why

I was loosing all my body hair from the neck down, I might have known why I now

have to sit down to pee so I don't wet myself (It's not a problem sexually since

libido is zero), and maybe just maybe I would have figured out why I am reduced

to tears at times because of the CPY11B1/CPY11B2 conflict causing the cortisol

problems! Speaking of headaches, I have had one for over 2 months now. The

first month as my body was rebelling to spironolactone and the last 6 week as I

have been washing it from my system! So if you have any extra placebos, send

few my way - it will save me breaking out the oxycodone and methadone!

Hopefully you did notice I lent my support to Barb for the treatment she had

been suggested. I bet I didn't scare her since she is a retired ICU nurse I

believe with a dual major maybe. Bet she knows more about side effects than I!

As for the cortisol and MDD issue I felt it important because I seem to remember

a nervous breakdown and some tramatic issues in the past which hopefully are IN

THE PAST but she should be aware if they start to resurface, forgive me if I

have the wrong person, Barb! She may even have a professional opinion!

I feel strongly that they have the order of MCBs reversed and that should be

obvious if you have been following the discussion. The DX should be for HTN and

that kid reviewing it should be told to " pound sand " . We have a " Banking and

Insurnce " committee here in Vermont that might like to hear my story and they

just might if I can get a doctor or two to agree!

I was reading " Case Detection, Diagnosis, and Treatment of Patients with Primary

Aldosteronism: An Endocrine Society Clinical Practice Guideline " . source:

http://jcem.endojournals.org/content/93/9/3266.full

From the Abstract:

Objective: Our objective was to develop clinical practice guidelines for the

diagnosis and treatment of patients with primary aldosteronism.

Participants: The Task Force comprised a chair, selected by the Clinical

Guidelines Subcommittee (CGS) of The Endocrine Society, six additional experts,

one methodologist, and a medical writer. The Task Force received no corporate

funding or remuneration.

I found this statement, among others, particularly interesting: " The use of

eplerenone may be preferred in the case of affected children, in whom there may

be concerns with respect to growth retardation and antiandrogenic effects of

glucocorticoids and spironolactone, respectively. " Now if I was in charge that

is the group I would use Spiro on, the boys until they were 25 and the girls

until half the plastic surgeons were less rich!

I consider my healthcare providers a team and I am the most important part of

that team, without me they are unemployed! I don't keep secrets from my team

and expect them not to keep secrets from me! Others join this group for

informtion and we are not doing our job if we keep secrets from them. It is up

to the reader to determine if it applies to them and how important it is to

them.

> >

> > Briefly, my adrenal history includes a right adenoma dx'd in 2000 and a left

adenoma dx'd in 2009 and drug-resistant HTN for 25 years. My right renal artery

is 70% stenosed (US dx) and the right kidney is atrophic. I had some basic lab

work done 2 weeks ago. Aldosterone was 25 (high). Renin 9.3 (high normal).

Started Spiro 25mg daily after labs were drawn. I have been on the Spiro for 2

weeks now. After one dose, the brain fog lifted, my lungs were much more clear,

the trace LE peripheral edema started to diminish and my blood pressure began to

decrease.

> >

> > The second week on Spiro, I felt generally horrible and my BPs were

improving but not good. At the end of the second week, BP normalizing and K+

maintained on 20mEq BID (had been taking 40 BID and supplementing when the low

K+ PVCs cycled in - usually 160mEq over 24 hrs). The sum: I am feeling much

better.

> >

> > I was referred to endo. Saw him today. Super doc with a great big brain. He

says there is so much going on with me, now and historically, he is not sure if

it is primary or secondary aldosteronism because of the renal artery stenosis or

the long-term NSAID therapy (800mg BID for the issues with my lumbar vertebrae

and left hip). Based on the numbers and diagnostics, he is leaning toward

secondary. He ordered labs to check for Pheo, Cushing's, etc., and I will see

him in one month. He also wants a repeat CT because the last one was 3 years

ago. I won't do that until Medicare kicks in July 1. He's okay with that.

> >

> > He said it was up to me if I wanted to purge the drugs, do a salt loading

and then retest. He also said he would refer me to a university setting for an

AVS if I wanted a definitive diagnosis. The way I view it... I am 65, retired,

and Spiro is working. Kind of a no brainer.

> >

> > Any thoughts?

> >

> > Barb

> >

>

>

>

>

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

>

>

[Guest guest]

Hey homeboy,

Thanks for the feedback. Right out of the chute, allow me to apologize for hammering you the other day. What appears to be rude and uncalled for, is normal 'speak' in my family and the ICU circles I've called home. We're a brassy lot and filter-free. Sometimes a good thing. Sometimes it came with a security escort to my car. Been fired more than a few times... a Barb-ism I wear with pride. It nearly always had to do with patient or nurse advocacy. Truth be told, you're a good man who is more than willing to educate others as you learn through the wrong that's been done to you. So, , good on you.

At the risk of perhaps offending again, I say this in humor and with caution. You know those smart phones out now that you speak into it in English, it translates into the desired language and speaks it back? So... I was wondering... do they have one that translates , cause sometimes it would be helpful <grin>? Please translate the following:

(are we still smiling?)

1) The postmenopausal women would be ____________________?

2) I do have an outstanding psych question regarding how ____________________ might effect MDD treatment.

3) I'm not sure I'm grasping your commentary/question regarding CYP11B(1/2). So... I will tell you what I know (usually not much). I did teach A & P and Micro labs at Indiana University, adjunct faculty for 12 years. Stopped doing that when I relocated to Houston to work for DeBakey (Google him) in 2001.

Therefore, it is my belief that one can never understand pathophysiology unless one understands normal anatomy/physiology. That said, it is necessary to look at the structure of the adrenal gland to 'get' why and how it goes on the blink.

The adrenal gland, histologically, is divided into 2 general layers: 1) cortex, 2) medulla

The medulla (deepest tissue of the gland) is easy - makes/secretes catecholamines (epi/norepi ---> adrenaline)

The cortex has 3 layers and each makes/secretes a separate type of hormone. From outermost to innermost:

1) zona glomerulosa - mineralcorticoids (aldosterone)

2) zona fasiculata - glucocorticoids (cortisol)

3) zona reticularis - androgens (estrogen, testosterone)

All of the adrenal hormones start out as cholesterol and then are changed into specific layer (zona) hormones through the action of enzymes. Enzymes cause a change in the shape of the molecule and it becomes a different hormone (just like the enzymatic changes in the production of aldosterone---> renin -> angiotensin I -> angiotensin II -> aldosterone). Each of those steps require a specific enzyme to create the new 'shape' of the hormone molecule.

Actually, CYP11B1 and CYP11B2 aren't really genes at all. They are enzymes (B1 = b-hydroxylase, B2 = aldosterone synthase) (Aside - words with 'ase' suffix are generally enzymes). I think they call them genes because they code for these enzymes, but it is confusing. They should call B1 and B2 and say that and are mucking up the hormone factory, but I'm pretty sure that's not gonna' happen.

So... the CYP11B1 acts on the zona fasiculata and impacts the enzyme action on glucocorticoids. CYP11B2 acts on the cells of the zona glomerulosa and impacts the enzyme action on mineralcorticoids. Because both are mutants, what comes out the other end are hormones that secrete and behave inappropriately.

The mutant enzymatic changes end up chronically resetting the relationship between the pituitary gland secretion of ACTH (adreocorticotropic hormone, which stimulates the adrenal cortex to secrete), creating upregulation (excessive mineral and glucocorticoids).

So... back to your question... what you are saying is that CYP11B1/2 can also alter enzymatic changes in the zona reticularis androgens? I don't see the correlation, because that's a whole different set of enzymes. Because enzymes are target tissue specific, it's not likely that enzymes that are mineral/glucocorticoid specific are capable of causing changes in androgens. I'll attach a picture here if it will let me to show you the different layers, hormones and enzymes. If not I'll post it to the group with a call out. You know what they say a picture is worth.

Finally, I find your MDD interesting. I have the same diagnosis for likely the same reason - PTSD. I have never been diagnosed with PTSD but you can't spend your childhood being molested and abused and not come out like a returning vet. Also, many on this site admit to a life filled with depression. Perhaps we're assigning the MDD to events that are unrelated. Perhaps the relationship has everything to do with adrenal abnormalities and nothing at all to do with the hardships of our life. I find that more plausible because you and I are both survivors, stuffed full of piss and vinegar. I'm thinkin' that maybe and are f-ing with my mood ring too.

Hugs,

Barb

Re: Update

Barb, I totally agree with your assessment and decision as long as you keep a close eye on adverse side effects! I was well controlled on 25mg bid but developed gynecomastia early. No recommendation from anyone to change because it "was not painful". My PCP was estatic and not willing to change anything until I developed 6 bumps in my rt. breast and she had to convince me that I was going to Boston (400+ miles R/T) for a mammogram! I considered Eplerenone but it took 3 trys to get it approved by the VA. I did a lot of research and found enough unanswered questions and the fact that there was limited research and finlly decided now was the time to persue an AVS and know all my options! As a postmenopusal female many of my concerns will not apply. I do have an outstanding question with my Psyco Staff regarding how it might affect MDD treatment. (There is apprently an effect on gene CYP11B1 and CYP11B2, cortisol and androgen, because they are neighbors on the channel. You surely know more about it than I!) - 65 yo super ob., fastidious male - 12mm X 13mm rt. a.adnoma with previous rt. flank pain. Treating with DASH. Stats w/o meds = BP 175/90 HR 59 BS 125. D/C Spironolactone 12/20/2011 due to adverse SX.Other Issues/Opportunities: OSA w Bi-Pap settings 13/19, DM2, Gynecomastia, MDD and PTSD.Meds: Duloxetine hcl 80 MG, Metoprolol Tartrate 200 MG, AmlodipineBesylate 5mg, 81mg aspirin and Metformin 2000MG. Started washing Spironolactone 12/20/11 to prepare for AVS.>> Briefly, my adrenal history includes a right adenoma dx'd in 2000 and a left adenoma dx'd in 2009 and drug-resistant HTN for 25 years. My right renal artery is 70% stenosed (US dx) and the right kidney is atrophic. I had some basic lab work done 2 weeks ago. Aldosterone was 25 (high). Renin 9.3 (high normal). Started Spiro 25mg daily after labs were drawn. I have been on the Spiro for 2 weeks now. After one dose, the brain fog lifted, my lungs were much more clear, the trace LE peripheral edema started to diminish and my blood pressure began to decrease. > > The second week on Spiro, I felt generally horrible and my BPs were improving but not good. At the end of the second week, BP normalizing and K+ maintained on 20mEq BID (had been taking 40 BID and supplementing when the low K+ PVCs cycled in - usually 160mEq over 24 hrs). The sum: I am feeling much better.> > I was referred to endo. Saw him today. Super doc with a great big brain. He says there is so much going on with me, now and historically, he is not sure if it is primary or secondary aldosteronism because of the renal artery stenosis or the long-term NSAID therapy (800mg BID for the issues with my lumbar vertebrae and left hip). Based on the numbers and diagnostics, he is leaning toward secondary. He ordered labs to check for Pheo, Cushing's, etc., and I will see him in one month. He also wants a repeat CT because the last one was 3 years ago. I won't do that until Medicare kicks in July 1. He's okay with that.> > He said it was up to me if I wanted to purge the drugs, do a salt loading and then retest. He also said he would refer me to a university setting for an AVS if I wanted a definitive diagnosis. The way I view it... I am 65, retired, and Spiro is working. Kind of a no brainer. > > Any thoughts?> > Barb>

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[Guest guest]

a,

Just a question. In what specific situation did you feel that it was acceptable

to treat a patient's pain with salt water? I was ICU for 25 years. I worked when

pain placebos were often listed on the MAR and I never once chose to give it.

Back then we were giving Demerol IM in the leg. Those injections created great

big knots that would hurt for weeks or even months later. The way I saw it... if

I'm going to give you pain later, I'll take it away now. It was never my place

to dissect the reason for a patient's pain. It was, however, my job to treat it.

If a pain medication was ordered, they got it. Outside the area of research in

which the patient knows that a percentage will receive a placebo, they have no

place in medicine. It is equal to emotional and psychological game playing.

However, life is a circle and karma's a given.

Barb

> >

> > Briefly, my adrenal history includes a right adenoma dx'd in 2000 and a left

adenoma dx'd in 2009 and drug-resistant HTN for 25 years. My right renal artery

is 70% stenosed (US dx) and the right kidney is atrophic. I had some basic lab

work done 2 weeks ago. Aldosterone was 25 (high). Renin 9.3 (high normal).

Started Spiro 25mg daily after labs were drawn. I have been on the Spiro for 2

weeks now. After one dose, the brain fog lifted, my lungs were much more clear,

the trace LE peripheral edema started to diminish and my blood pressure began to

decrease.

> >

> > The second week on Spiro, I felt generally horrible and my BPs were

improving but not good. At the end of the second week, BP normalizing and K+

maintained on 20mEq BID (had been taking 40 BID and supplementing when the low

K+ PVCs cycled in - usually 160mEq over 24 hrs). The sum: I am feeling much

better.

> >

> > I was referred to endo. Saw him today. Super doc with a great big brain. He

says there is so much going on with me, now and historically, he is not sure if

it is primary or secondary aldosteronism because of the renal artery stenosis or

the long-term NSAID therapy (800mg BID for the issues with my lumbar vertebrae

and left hip). Based on the numbers and diagnostics, he is leaning toward

secondary. He ordered labs to check for Pheo, Cushing's, etc., and I will see

him in one month. He also wants a repeat CT because the last one was 3 years

ago. I won't do that until Medicare kicks in July 1. He's okay with that.

> >

> > He said it was up to me if I wanted to purge the drugs, do a salt loading

and then retest. He also said he would refer me to a university setting for an

AVS if I wanted a definitive diagnosis. The way I view it... I am 65, retired,

and Spiro is working. Kind of a no brainer.

> >

> > Any thoughts?

> >

> > Barb

> >

>

>

>

>

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

>

>

[Guest guest]

Need normals for your lab. In order to interpret renin and also need the 24 hr urine Na 24 hr on the day they were tested and what meds you were on. US OF Renal art sten not very reliable. Need real intra arterial angiogram for accurate dx and them pressure gradients across stenosis. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Feb 2, 2012, at 14:31, amazingkeltic <rainbowdayz@...> wrote:

Briefly, my adrenal history includes a right adenoma dx'd in 2000 and a left adenoma dx'd in 2009 and drug-resistant HTN for 25 years. My right renal artery is 70% stenosed (US dx) and the right kidney is atrophic. I had some basic lab work done 2 weeks ago. Aldosterone was 25 (high). Renin 9.3 (high normal). Started Spiro 25mg daily after labs were drawn. I have been on the Spiro for 2 weeks now. After one dose, the brain fog lifted, my lungs were much more clear, the trace LE peripheral edema started to diminish and my blood pressure began to decrease.

The second week on Spiro, I felt generally horrible and my BPs were improving but not good. At the end of the second week, BP normalizing and K+ maintained on 20mEq BID (had been taking 40 BID and supplementing when the low K+ PVCs cycled in - usually 160mEq over 24 hrs). The sum: I am feeling much better.

I was referred to endo. Saw him today. Super doc with a great big brain. He says there is so much going on with me, now and historically, he is not sure if it is primary or secondary aldosteronism because of the renal artery stenosis or the long-term NSAID therapy (800mg BID for the issues with my lumbar vertebrae and left hip). Based on the numbers and diagnostics, he is leaning toward secondary. He ordered labs to check for Pheo, Cushing's, etc., and I will see him in one month. He also wants a repeat CT because the last one was 3 years ago. I won't do that until Medicare kicks in July 1. He's okay with that.

He said it was up to me if I wanted to purge the drugs, do a salt loading and then retest. He also said he would refer me to a university setting for an AVS if I wanted a definitive diagnosis. The way I view it... I am 65, retired, and Spiro is working. Kind of a no brainer.

Any thoughts?

Barb