Re:

[Guest guest]

Hi ,

I'm curious if Mayo has the 3 dimensional EDF (elongation, derotation, flexion) table built for a child's size? Or if they are using the adult size table on children, do you know? That can make a difference.

I don't hink I've heard of any parent on this group going to Mayo, that's why I'm interested if it's another option for our kids. Do they do the Mehta method style of early casting, with the large mushroom shaped cut-out in the front for belly and chest expansion and to prevent rib deformities? Or is it the smaller cut out of the Risser style cast? Is there a cut-out in the back of the cast as well? Maybe someone else here does goes to Mayo, I may have just missed it...Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)

Subject: Re: To: infantile_scoliosis Date: Tuesday, September 15, 2009, 12:38 PM

Christana. Well thanx so much! Mayo does have the table but I just don't feel that they do it correctly b/c he gets sick everytime he has one on and last time he got pneumonia and upper respitory infections through the 3 months! Did ur son totally lose his appetite when he had his first cast put on? My son did and still to this day he will not eat any food he will only drink from a bottle. Sent via BlackBerry from T-Mobile

From: Borlik Date: Tue, 15 Sep 2009 12:48:55 -0500To: <infantile_scoliosis @yahoogroups. com>Subject: RE: [infantile_scoliosi s]

Hi ,Where are you located? You mentioned the Mayo so I'm assuming you're somewhere in or near MN. I'm in Minneapolis. I checked into the Mayo, Gillette and Shriners a couple of years ago when my son needed casting. None of the hospitals in MN were performing the casting technique that I wanted. The closest hospital was Shriner's in Chicago. I believe that is still the case. We ended up only going to Shriner's Chicago for a consult as the casting doc was out for a few months when Noah needed his cast. So we ended up traveling to Salt Lake City for our casts. I know that the Shriner's in Minneapolis is hoping to begin casting soon, but last I heard they still did not have a table. I've been meaning to email the nurse there to see how far along they are in the process of acquiring one. If you're not happy with the Mayo - I would suggest seeking out

other opinions. Let me know if I can be of anymore help.~Noah 4 years old9 months of casting in SLC; Currently on 1 1/2 years of bracingAnd Mariella 7 months old currently waiting and watching at 11*

To: infantile_scoliosis @yahoogroups. comFrom: carriedonahoe@ ymail.comDate: Tue, 15 Sep 2009 14:49:28 +0000Subject: Re: [infantile_scoliosi s] Isabella's next cast

Hello everyone my name is and my son Tucker has scoliosis and is in his 2nd cast so was just kinda putting this out there cuz interested to hear how other parents and children have coped with all this! We have been going to Mayo but I don't feel like they have done the best job that they could for him. Was just kinda interested to see if anyone would have recent pictures of there childrens casts for me to see

Sent via BlackBerry from T-Mobile

From: Patty Bowen Date: Tue, 15 Sep 2009 06:07:58 -0700 (PDT)To: <infantile_scoliosis @yahoogroups. com>Subject: Re: [infantile_scoliosi s] Isabella's next cast

I'll be sure to do that and good luck with the casting on Monday. I'll be thinking of you!

Patty, mom of Isabella, 2 years old, in 1st cast (Rochester) & mom to & Evan

From: Joan Vallee <hayro1611yahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Tuesday, September 15, 2009 8:21:28 AMSubject: Re: [infantile_scoliosi s] Isabella's next cast

Good luck to you and Isabella. I totally understand. I have to tell my 9 year old to wash her hands after school and after she plays with friends. Our first cast is next monday. Let us know how it goes Friday. Joanmom to Hayden 2 1/262 degreesTreated at ish Rite Hospital Dallas, TX

From: Patty Bowen <bowenpattyyahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Monday, September 14, 2009 11:34:13 PMSubject: [infantile_scoliosi s] Isabella's next cast

Hi everyone! Please throw prayers my way that Isabella doesn't get sick before her 2nd cast this Friday. My boys bring a virus of some sort home every few weeks from school and I've been driving them crazy yelling at them to keep their hands away from their faces. Yes, I'm a little neurotic right now. I just really want this to happen because I need to know if it's helping her at all. If she stays healthy, we will leave Thursday am and have her cast removed that day and the 2nd cast done on Friday. Anyone else going to be at Rochester those 2 days?

Patty, mom of Isabella, 2 years old, in 1st cast (Rochester) & mom to & Evan

____________ _________ _________ _________ _________ __

[Guest guest]

Oh! So sorry to hear that he's struggling. Perhaps the casts are too tight on his belly?! Not sure. I never experienced that before and I believe all of the other patients on this board are able to eat normally in their casts.

Yikes about the pneumonia! Noah never got sick in his casts. Does the doc think the cast is causing the sickness? Is his lung function normal without the casts on? I know lung function can be compromised in severe cases of scoliosis.

I've attached a recent article that was published regarding the casting technique that most of our kiddos on this board receive. There are pictures in the article too. I hope that helps. Let me know if you need anything else.

~Noah 4 years old9 months of casting in SLC; Currently on 1 1/2 years of bracingAnd Mariella 7 months old currently waiting and watching at 11*

To: infantile_scoliosis From: carriedonahoe@...Date: Tue, 15 Sep 2009 19:38:37 +0000Subject: Re:

Christana. Well thanx so much! Mayo does have the table but I just don't feel that they do it correctly b/c he gets sick everytime he has one on and last time he got pneumonia and upper respitory infections through the 3 months! Did ur son totally lose his appetite when he had his first cast put on? My son did and still to this day he will not eat any food he will only drink from a bottle. Sent via BlackBerry from T-Mobile

From: Borlik Date: Tue, 15 Sep 2009 12:48:55 -0500To: <infantile_scoliosis >Subject: RE:

Hi ,Where are you located? You mentioned the Mayo so I'm assuming you're somewhere in or near MN. I'm in Minneapolis. I checked into the Mayo, Gillette and Shriners a couple of years ago when my son needed casting. None of the hospitals in MN were performing the casting technique that I wanted. The closest hospital was Shriner's in Chicago. I believe that is still the case. We ended up only going to Shriner's Chicago for a consult as the casting doc was out for a few months when Noah needed his cast. So we ended up traveling to Salt Lake City for our casts. I know that the Shriner's in Minneapolis is hoping to begin casting soon, but last I heard they still did not have a table. I've been meaning to email the nurse there to see how far along they are in the process of acquiring one. If you're not happy with the Mayo - I would suggest seeking out other opinions. Let me know if I can be of anymore help.~Noah 4 years old9 months of casting in SLC; Currently on 1 1/2 years of bracingAnd Mariella 7 months old currently waiting and watching at 11*

To: infantile_scoliosis From: carriedonahoeymailDate: Tue, 15 Sep 2009 14:49:28 +0000Subject: Re: Isabella's next cast

Hello everyone my name is and my son Tucker has scoliosis and is in his 2nd cast so was just kinda putting this out there cuz interested to hear how other parents and children have coped with all this! We have been going to Mayo but I don't feel like they have done the best job that they could for him. Was just kinda interested to see if anyone would have recent pictures of there childrens casts for me to see

Sent via BlackBerry from T-Mobile

From: Patty Bowen Date: Tue, 15 Sep 2009 06:07:58 -0700 (PDT)To: <infantile_scoliosis >Subject: Re: Isabella's next cast

I'll be sure to do that and good luck with the casting on Monday. I'll be thinking of you!

Patty, mom of Isabella, 2 years old, in 1st cast (Rochester) & mom to & Evan

From: Joan Vallee <hayro1611>To: infantile_scoliosis Sent: Tuesday, September 15, 2009 8:21:28 AMSubject: Re: Isabella's next cast

Good luck to you and Isabella. I totally understand. I have to tell my 9 year old to wash her hands after school and after she plays with friends. Our first cast is next monday. Let us know how it goes Friday. Joanmom to Hayden 2 1/262 degreesTreated at ish Rite Hospital Dallas, TX

From: Patty Bowen <bowenpattyyahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Monday, September 14, 2009 11:34:13 PMSubject: [infantile_scoliosi s] Isabella's next cast

Hi everyone! Please throw prayers my way that Isabella doesn't get sick before her 2nd cast this Friday. My boys bring a virus of some sort home every few weeks from school and I've been driving them crazy yelling at them to keep their hands away from their faces. Yes, I'm a little neurotic right now. I just really want this to happen because I need to know if it's helping her at all. If she stays healthy, we will leave Thursday am and have her cast removed that day and the 2nd cast done on Friday. Anyone else going to be at Rochester those 2 days?

Patty, mom of Isabella, 2 years old, in 1st cast (Rochester) & mom to & Evan

________________________________________________ __

[Guest guest]

Happy to "meet" a fellow MN mom. Would you mind if I email you a pic of my son's cast privately? I'm curious if yours looks similar.

All Shriner's hospitals are free of charge. They usually will even provide transportation to you. I know Chicago is still quite a trip though from Rochester (probably 6 hours?) It might be worth it though. The doc in Chicago is one of the author's of the article that I sent you.~Noah 4 years old9 months of casting in SLC; Currently on 1 1/2 years of bracingAnd Mariella 7 months old currently waiting and watching at 11*

To: infantile_scoliosis From: carriedonahoe@...Date: Tue, 15 Sep 2009 19:56:53 +0000Subject: Re:

And we are in Rochester so we r the closest to Mayo and not to sure if we could afford to go out of state for help for him. Sent via BlackBerry from T-Mobile

From: Borlik Date: Tue, 15 Sep 2009 12:48:55 -0500To: <infantile_scoliosis >Subject: RE:

Hi ,Where are you located? You mentioned the Mayo so I'm assuming you're somewhere in or near MN. I'm in Minneapolis. I checked into the Mayo, Gillette and Shriners a couple of years ago when my son needed casting. None of the hospitals in MN were performing the casting technique that I wanted. The closest hospital was Shriner's in Chicago. I believe that is still the case. We ended up only going to Shriner's Chicago for a consult as the casting doc was out for a few months when Noah needed his cast. So we ended up traveling to Salt Lake City for our casts. I know that the Shriner's in Minneapolis is hoping to begin casting soon, but last I heard they still did not have a table. I've been meaning to email the nurse there to see how far along they are in the process of acquiring one. If you're not happy with the Mayo - I would suggest seeking out other opinions. Let me know if I can be of anymore help.~Noah 4 years old9 months of casting in SLC; Currently on 1 1/2 years of bracingAnd Mariella 7 months old currently waiting and watching at 11*

To: infantile_scoliosis From: carriedonahoeymailDate: Tue, 15 Sep 2009 14:49:28 +0000Subject: Re: Isabella's next cast

Hello everyone my name is and my son Tucker has scoliosis and is in his 2nd cast so was just kinda putting this out there cuz interested to hear how other parents and children have coped with all this! We have been going to Mayo but I don't feel like they have done the best job that they could for him. Was just kinda interested to see if anyone would have recent pictures of there childrens casts for me to see

Sent via BlackBerry from T-Mobile

From: Patty Bowen Date: Tue, 15 Sep 2009 06:07:58 -0700 (PDT)To: <infantile_scoliosis >Subject: Re: Isabella's next cast

I'll be sure to do that and good luck with the casting on Monday. I'll be thinking of you!

Patty, mom of Isabella, 2 years old, in 1st cast (Rochester) & mom to & Evan

From: Joan Vallee <hayro1611>To: infantile_scoliosis Sent: Tuesday, September 15, 2009 8:21:28 AMSubject: Re: Isabella's next cast

Good luck to you and Isabella. I totally understand. I have to tell my 9 year old to wash her hands after school and after she plays with friends. Our first cast is next monday. Let us know how it goes Friday. Joanmom to Hayden 2 1/262 degreesTreated at ish Rite Hospital Dallas, TX

From: Patty Bowen <bowenpattyyahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Monday, September 14, 2009 11:34:13 PMSubject: [infantile_scoliosi s] Isabella's next cast

Hi everyone! Please throw prayers my way that Isabella doesn't get sick before her 2nd cast this Friday. My boys bring a virus of some sort home every few weeks from school and I've been driving them crazy yelling at them to keep their hands away from their faces. Yes, I'm a little neurotic right now. I just really want this to happen because I need to know if it's helping her at all. If she stays healthy, we will leave Thursday am and have her cast removed that day and the 2nd cast done on Friday. Anyone else going to be at Rochester those 2 days?

Patty, mom of Isabella, 2 years old, in 1st cast (Rochester) & mom to & Evan

________________________________________________ __

[Guest guest]

Heidi, The style of table I am not for sure on what it is I guess I have not been told and have never asked! I do know that Tucker is there first case for infantile. Yes it is the Mehta form but they do not leave a very big mushroom on front so I believe its way to tight amd he has no room to breath. Yes there is a hole in the back also!Sent via BlackBerry from T-MobileFrom: NIck Guthe Date: Tue, 15 Sep 2009 13:03:19 -0700 (PDT)To: <infantile_scoliosis >Subject: Re: Hi , I'm curious if Mayo has the 3 dimensional EDF (elongation, derotation, flexion) table built for a child's size? Or if they are using the adult size table on children, do you know? That can make a difference. I don't hink I've heard of any parent on this group going to Mayo, that's why I'm interested if it's another option for our kids. Do they do the Mehta method style of early casting, with the large mushroom shaped cut-out in the front for belly and chest expansion and to prevent rib deformities? Or is it the smaller cut out of the Risser style cast? Is there a cut-out in the back of the cast as well? Maybe someone else here does goes to Mayo, I may have just missed it...Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)From: carriedonahoeymail <carriedonahoeymail>Subject: Re: To: infantile_scoliosis Date: Tuesday, September 15, 2009, 12:38 PM Christana. Well thanx so much! Mayo does have the table but I just don't feel that they do it correctly b/c he gets sick everytime he has one on and last time he got pneumonia and upper respitory infections through the 3 months! Did ur son totally lose his appetite when he had his first cast put on? My son did and still to this day he will not eat any food he will only drink from a bottle. Sent via BlackBerry from T-MobileFrom: Borlik Date: Tue, 15 Sep 2009 12:48:55 -0500To: <infantile_scoliosis @yahoogroups. com>Subject: RE: [infantile_scoliosi s] Hi ,Where are you located? You mentioned the Mayo so I'm assuming you're somewhere in or near MN. I'm in Minneapolis. I checked into the Mayo, Gillette and Shriners a couple of years ago when my son needed casting. None of the hospitals in MN were performing the casting technique that I wanted. The closest hospital was Shriner's in Chicago. I believe that is still the case. We ended up only going to Shriner's Chicago for a consult as the casting doc was out for a few months when Noah needed his cast. So we ended up traveling to Salt Lake City for our casts. I know that the Shriner's in Minneapolis is hoping to begin casting soon, but last I heard they still did not have a table. I've been meaning to email the nurse there to see how far along they are in the process of acquiring one. If you're not happy with the Mayo - I would suggest seeking out other opinions. Let me know if I can be of anymore help.~Noah 4 years old9 months of casting in SLC; Currently on 1 1/2 years of bracingAnd Mariella 7 months old currently waiting and watching at 11* To: infantile_scoliosis @yahoogroups. comFrom: carriedonahoe@ ymail.comDate: Tue, 15 Sep 2009 14:49:28 +0000Subject: Re: [infantile_scoliosi s] Isabella's next cast Hello everyone my name is and my son Tucker has scoliosis and is in his 2nd cast so was just kinda putting this out there cuz interested to hear how other parents and children have coped with all this! We have been going to Mayo but I don't feel like they have done the best job that they could for him. Was just kinda interested to see if anyone would have recent pictures of there childrens casts for me to seeSent via BlackBerry from T-MobileFrom: Patty Bowen Date: Tue, 15 Sep 2009 06:07:58 -0700 (PDT)To: <infantile_scoliosis @yahoogroups. com>Subject: Re: [infantile_scoliosi s] Isabella's next cast I'll be sure to do that and good luck with the casting on Monday. I'll be thinking of you! Patty, mom of Isabella, 2 years old, in 1st cast (Rochester) & mom to & EvanFrom: Joan Vallee <hayro1611yahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Tuesday, September 15, 2009 8:21:28 AMSubject: Re: [infantile_scoliosi s] Isabella's next cast Good luck to you and Isabella. I totally understand. I have to tell my 9 year old to wash her hands after school and after she plays with friends. Our first cast is next monday. Let us know how it goes Friday. Joanmom to Hayden 2 1/262 degreesTreated at ish Rite Hospital Dallas, TXFrom: Patty Bowen <bowenpattyyahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Monday, September 14, 2009 11:34:13 PMSubject: [infantile_scoliosi s] Isabella's next cast Hi everyone! Please throw prayers my way that Isabella doesn't get sick before her 2nd cast this Friday. My boys bring a virus of some sort home every few weeks from school and I've been driving them crazy yelling at them to keep their hands away from their faces. Yes, I'm a little neurotic right now. I just really want this to happen because I need to know if it's helping her at all. If she stays healthy, we will leave Thursday am and have her cast removed that day and the 2nd cast done on Friday. Anyone else going to be at Rochester those 2 days? Patty, mom of Isabella, 2 years old, in 1st cast (Rochester) & mom to & Evan____________ _________ _________ _________ _________ __

[Guest guest]

Yea that would b awesome actually! I'm curios how his looksSent via BlackBerry from T-MobileFrom: Borlik Date: Tue, 15 Sep 2009 15:10:35 -0500To: <infantile_scoliosis >Subject: RE: Happy to "meet" a fellow MN mom. Would you mind if I email you a pic of my son's cast privately? I'm curious if yours looks similar. All Shriner's hospitals are free of charge. They usually will even provide transportation to you. I know Chicago is still quite a trip though from Rochester (probably 6 hours?) It might be worth it though. The doc in Chicago is one of the author's of the article that I sent you.~Noah 4 years old9 months of casting in SLC; Currently on 1 1/2 years of bracingAnd Mariella 7 months old currently waiting and watching at 11* To: infantile_scoliosis From: carriedonahoeymailDate: Tue, 15 Sep 2009 19:56:53 +0000Subject: Re: And we are in Rochester so we r the closest to Mayo and not to sure if we could afford to go out of state for help for him. Sent via BlackBerry from T-Mobile From: Borlik Date: Tue, 15 Sep 2009 12:48:55 -0500To: <infantile_scoliosis >Subject: RE: Hi ,Where are you located? You mentioned the Mayo so I'm assuming you're somewhere in or near MN. I'm in Minneapolis. I checked into the Mayo, Gillette and Shriners a couple of years ago when my son needed casting. None of the hospitals in MN were performing the casting technique that I wanted. The closest hospital was Shriner's in Chicago. I believe that is still the case. We ended up only going to Shriner's Chicago for a consult as the casting doc was out for a few months when Noah needed his cast. So we ended up traveling to Salt Lake City for our casts. I know that the Shriner's in Minneapolis is hoping to begin casting soon, but last I heard they still did not have a table. I've been meaning to email the nurse there to see how far along they are in the process of acquiring one. If you're not happy with the Mayo - I would suggest seeking out other opinions. Let me know if I can be of anymore help.~Noah 4 years old9 months of casting in SLC; Currently on 1 1/2 years of bracingAnd Mariella 7 months old currently waiting and watching at 11* To: infantile_scoliosis From: carriedonahoeymailDate: Tue, 15 Sep 2009 14:49:28 +0000Subject: Re: Isabella's next cast Hello everyone my name is and my son Tucker has scoliosis and is in his 2nd cast so was just kinda putting this out there cuz interested to hear how other parents and children have coped with all this! We have been going to Mayo but I don't feel like they have done the best job that they could for him. Was just kinda interested to see if anyone would have recent pictures of there childrens casts for me to seeSent via BlackBerry from T-MobileFrom: Patty Bowen Date: Tue, 15 Sep 2009 06:07:58 -0700 (PDT)To: <infantile_scoliosis >Subject: Re: Isabella's next cast I'll be sure to do that and good luck with the casting on Monday. I'll be thinking of you! Patty, mom of Isabella, 2 years old, in 1st cast (Rochester) & mom to & EvanFrom: Joan Vallee <hayro1611>To: infantile_scoliosis Sent: Tuesday, September 15, 2009 8:21:28 AMSubject: Re: Isabella's next cast Good luck to you and Isabella. I totally understand. I have to tell my 9 year old to wash her hands after school and after she plays with friends. Our first cast is next monday. Let us know how it goes Friday. Joanmom to Hayden 2 1/262 degreesTreated at ish Rite Hospital Dallas, TXFrom: Patty Bowen <bowenpattyyahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Monday, September 14, 2009 11:34:13 PMSubject: [infantile_scoliosi s] Isabella's next cast Hi everyone! Please throw prayers my way that Isabella doesn't get sick before her 2nd cast this Friday. My boys bring a virus of some sort home every few weeks from school and I've been driving them crazy yelling at them to keep their hands away from their faces. Yes, I'm a little neurotic right now. I just really want this to happen because I need to know if it's helping her at all. If she stays healthy, we will leave Thursday am and have her cast removed that day and the 2nd cast done on Friday. Anyone else going to be at Rochester those 2 days? Patty, mom of Isabella, 2 years old, in 1st cast (Rochester) & mom to & Evan________________________________________________ __

[Guest guest]

I think the child sized 3 dimensional table is called an AMIL frame, if that helps to know. I find for our son the big cut-out in the front is a lifesaver, it seems he'd be really uncomfortable without it.Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)

From: carriedonahoe@ ymail.com <carriedonahoe@ ymail.com>Subject: Re: [infantile_scoliosi s] To: infantile_scoliosis @yahoogroups. comDate: Tuesday, September 15, 2009, 12:38 PM

Christana. Well thanx so much! Mayo does have the table but I just don't feel that they do it correctly b/c he gets sick everytime he has one on and last time he got pneumonia and upper respitory infections through the 3 months! Did ur son totally lose his appetite when he had his first cast put on? My son did and still to this day he will not eat any food he will only drink from a bottle. Sent via BlackBerry from T-Mobile

From: Borlik Date: Tue, 15 Sep 2009 12:48:55 -0500To: <infantile_scoliosis @yahoogroups. com>Subject: RE: [infantile_scoliosi s]

Hi ,Where are you located? You mentioned the Mayo so I'm assuming you're somewhere in or near MN. I'm in Minneapolis. I checked into the Mayo, Gillette and Shriners a couple of years ago when my son needed casting. None of the hospitals in MN were performing the casting technique that I wanted. The closest hospital was Shriner's in Chicago. I believe that is still the case. We ended up only going to Shriner's Chicago for a consult as the casting doc was out for a few months when Noah needed his cast. So we ended up traveling to Salt Lake City for our casts. I know that the Shriner's in Minneapolis is hoping to begin casting soon, but last I heard they still did not have a table. I've been meaning to email the nurse there to see how far along they are in the process of acquiring one. If you're not happy with the Mayo - I would suggest seeking out

other opinions. Let me know if I can be of anymore help.~Noah 4 years old9 months of casting in SLC; Currently on 1 1/2 years of bracingAnd Mariella 7 months old currently waiting and watching at 11*

To: infantile_scoliosis @yahoogroups. comFrom: carriedonahoe@ ymail.comDate: Tue, 15 Sep 2009 14:49:28 +0000Subject: Re: [infantile_scoliosi s] Isabella's next cast

Hello everyone my name is and my son Tucker has scoliosis and is in his 2nd cast so was just kinda putting this out there cuz interested to hear how other parents and children have coped with all this! We have been going to Mayo but I don't feel like they have done the best job that they could for him. Was just kinda interested to see if anyone would have recent pictures of there childrens casts for me to see

Sent via BlackBerry from T-Mobile

From: Patty Bowen Date: Tue, 15 Sep 2009 06:07:58 -0700 (PDT)To: <infantile_scoliosis @yahoogroups. com>Subject: Re: [infantile_scoliosi s] Isabella's next cast

I'll be sure to do that and good luck with the casting on Monday. I'll be thinking of you!

Patty, mom of Isabella, 2 years old, in 1st cast (Rochester) & mom to & Evan

From: Joan Vallee <hayro1611yahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Tuesday, September 15, 2009 8:21:28 AMSubject: Re: [infantile_scoliosi s] Isabella's next cast

Good luck to you and Isabella. I totally understand. I have to tell my 9 year old to wash her hands after school and after she plays with friends. Our first cast is next monday. Let us know how it goes Friday. Joanmom to Hayden 2 1/262 degreesTreated at ish Rite Hospital Dallas, TX

From: Patty Bowen <bowenpattyyahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Monday, September 14, 2009 11:34:13 PMSubject: [infantile_scoliosi s] Isabella's next cast

Hi everyone! Please throw prayers my way that Isabella doesn't get sick before her 2nd cast this Friday. My boys bring a virus of some sort home every few weeks from school and I've been driving them crazy yelling at them to keep their hands away from their faces. Yes, I'm a little neurotic right now. I just really want this to happen because I need to know if it's helping her at all. If she stays healthy, we will leave Thursday am and have her cast removed that day and the 2nd cast done on Friday. Anyone else going to be at Rochester those 2 days?

Patty, mom of Isabella, 2 years old, in 1st cast (Rochester) & mom to & Evan

____________ _________ _________ _________ _________ __

[Guest guest]

Trust me he seems very uncomfortable everyday all day but the more I comolain the less it gets me from Mayo so I will be seeking other help!Sent via BlackBerry from T-MobileFrom: NIck Guthe Date: Tue, 15 Sep 2009 14:18:15 -0700 (PDT)To: <infantile_scoliosis >Subject: Re: I think the child sized 3 dimensional table is called an AMIL frame, if that helps to know. I find for our son the big cut-out in the front is a lifesaver, it seems he'd be really uncomfortable without it.Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)From: carriedonahoe@ ymail.com <carriedonahoe@ ymail.com>Subject: Re: [infantile_scoliosi s] To: infantile_scoliosis @yahoogroups. comDate: Tuesday, September 15, 2009, 12:38 PM Christana. Well thanx so much! Mayo does have the table but I just don't feel that they do it correctly b/c he gets sick everytime he has one on and last time he got pneumonia and upper respitory infections through the 3 months! Did ur son totally lose his appetite when he had his first cast put on? My son did and still to this day he will not eat any food he will only drink from a bottle. Sent via BlackBerry from T-MobileFrom: Borlik Date: Tue, 15 Sep 2009 12:48:55 -0500To: <infantile_scoliosis @yahoogroups. com>Subject: RE: [infantile_scoliosi s] Hi ,Where are you located? You mentioned the Mayo so I'm assuming you're somewhere in or near MN. I'm in Minneapolis. I checked into the Mayo, Gillette and Shriners a couple of years ago when my son needed casting. None of the hospitals in MN were performing the casting technique that I wanted. The closest hospital was Shriner's in Chicago. I believe that is still the case. We ended up only going to Shriner's Chicago for a consult as the casting doc was out for a few months when Noah needed his cast. So we ended up traveling to Salt Lake City for our casts. I know that the Shriner's in Minneapolis is hoping to begin casting soon, but last I heard they still did not have a table. I've been meaning to email the nurse there to see how far along they are in the process of acquiring one. If you're not happy with the Mayo - I would suggest seeking out other opinions. Let me know if I can be of anymore help.~Noah 4 years old9 months of casting in SLC; Currently on 1 1/2 years of bracingAnd Mariella 7 months old currently waiting and watching at 11* To: infantile_scoliosis @yahoogroups. comFrom: carriedonahoe@ ymail.comDate: Tue, 15 Sep 2009 14:49:28 +0000Subject: Re: [infantile_scoliosi s] Isabella's next cast Hello everyone my name is and my son Tucker has scoliosis and is in his 2nd cast so was just kinda putting this out there cuz interested to hear how other parents and children have coped with all this! We have been going to Mayo but I don't feel like they have done the best job that they could for him. Was just kinda interested to see if anyone would have recent pictures of there childrens casts for me to seeSent via BlackBerry from T-MobileFrom: Patty Bowen Date: Tue, 15 Sep 2009 06:07:58 -0700 (PDT)To: <infantile_scoliosis @yahoogroups. com>Subject: Re: [infantile_scoliosi s] Isabella's next cast I'll be sure to do that and good luck with the casting on Monday. I'll be thinking of you! Patty, mom of Isabella, 2 years old, in 1st cast (Rochester) & mom to & EvanFrom: Joan Vallee <hayro1611yahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Tuesday, September 15, 2009 8:21:28 AMSubject: Re: [infantile_scoliosi s] Isabella's next cast Good luck to you and Isabella. I totally understand. I have to tell my 9 year old to wash her hands after school and after she plays with friends. Our first cast is next monday. Let us know how it goes Friday. Joanmom to Hayden 2 1/262 degreesTreated at ish Rite Hospital Dallas, TXFrom: Patty Bowen <bowenpattyyahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Monday, September 14, 2009 11:34:13 PMSubject: [infantile_scoliosi s] Isabella's next cast Hi everyone! Please throw prayers my way that Isabella doesn't get sick before her 2nd cast this Friday. My boys bring a virus of some sort home every few weeks from school and I've been driving them crazy yelling at them to keep their hands away from their faces. Yes, I'm a little neurotic right now. I just really want this to happen because I need to know if it's helping her at all. If she stays healthy, we will leave Thursday am and have her cast removed that day and the 2nd cast done on Friday. Anyone else going to be at Rochester those 2 days? Patty, mom of Isabella, 2 years old, in 1st cast (Rochester) & mom to & Evan____________ _________ _________ _________ _________ __

[Guest guest]

Good for you!!!Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)

From: carriedonahoe@ ymail.com <carriedonahoe@ ymail.com>Subject: Re: [infantile_scoliosi s] To: infantile_scoliosis @yahoogroups. comDate: Tuesday, September 15, 2009, 12:38 PM

Christana. Well thanx so much! Mayo does have the table but I just don't feel that they do it correctly b/c he gets sick everytime he has one on and last time he got pneumonia and upper respitory infections through the 3 months! Did ur son totally lose his appetite when he had his first cast put on? My son did and still to this day he will not eat any food he will only drink from a bottle. Sent via BlackBerry from T-Mobile

From: Borlik Date: Tue, 15 Sep 2009 12:48:55 -0500To: <infantile_scoliosis @yahoogroups. com>Subject: RE: [infantile_scoliosi s]

Hi ,Where are you located? You mentioned the Mayo so I'm assuming you're somewhere in or near MN. I'm in Minneapolis. I checked into the Mayo, Gillette and Shriners a couple of years ago when my son needed casting. None of the hospitals in MN were performing the casting technique that I wanted. The closest hospital was Shriner's in Chicago. I believe that is still the case. We ended up only going to Shriner's Chicago for a consult as the casting doc was out for a few months when Noah needed his cast. So we ended up traveling to Salt Lake City for our casts. I know that the Shriner's in Minneapolis is hoping to begin casting soon, but last I heard they still did not have a table. I've been meaning to email the nurse there to see how far along they are in the process of acquiring one. If you're not happy with the Mayo - I would suggest seeking out

other opinions. Let me know if I can be of anymore help.~Noah 4 years old9 months of casting in SLC; Currently on 1 1/2 years of bracingAnd Mariella 7 months old currently waiting and watching at 11*

To: infantile_scoliosis @yahoogroups. comFrom: carriedonahoe@ ymail.comDate: Tue, 15 Sep 2009 14:49:28 +0000Subject: Re: [infantile_scoliosi s] Isabella's next cast

Hello everyone my name is and my son Tucker has scoliosis and is in his 2nd cast so was just kinda putting this out there cuz interested to hear how other parents and children have coped with all this! We have been going to Mayo but I don't feel like they have done the best job that they could for him. Was just kinda interested to see if anyone would have recent pictures of there childrens casts for me to see

Sent via BlackBerry from T-Mobile

From: Patty Bowen Date: Tue, 15 Sep 2009 06:07:58 -0700 (PDT)To: <infantile_scoliosis @yahoogroups. com>Subject: Re: [infantile_scoliosi s] Isabella's next cast

I'll be sure to do that and good luck with the casting on Monday. I'll be thinking of you!

Patty, mom of Isabella, 2 years old, in 1st cast (Rochester) & mom to & Evan

From: Joan Vallee <hayro1611yahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Tuesday, September 15, 2009 8:21:28 AMSubject: Re: [infantile_scoliosi s] Isabella's next cast

Good luck to you and Isabella. I totally understand. I have to tell my 9 year old to wash her hands after school and after she plays with friends. Our first cast is next monday. Let us know how it goes Friday. Joanmom to Hayden 2 1/262 degreesTreated at ish Rite Hospital Dallas, TX

From: Patty Bowen <bowenpattyyahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Monday, September 14, 2009 11:34:13 PMSubject: [infantile_scoliosi s] Isabella's next cast

Hi everyone! Please throw prayers my way that Isabella doesn't get sick before her 2nd cast this Friday. My boys bring a virus of some sort home every few weeks from school and I've been driving them crazy yelling at them to keep their hands away from their faces. Yes, I'm a little neurotic right now. I just really want this to happen because I need to know if it's helping her at all. If she stays healthy, we will leave Thursday am and have her cast removed that day and the 2nd cast done on Friday. Anyone else going to be at Rochester those 2 days?

Patty, mom of Isabella, 2 years old, in 1st cast (Rochester) & mom to & Evan

____________ _________ _________ _________ _________ __

[Guest guest]

Dear NFP professionals,A hacker got access to my e-mail account at blilicote@....

Please discard any message asking for money.

God BlessLiliana Cote de Bejarano MD, MPHPD How can I change the email to continue receiving messages from this list?ThanksSubject: Welcome!To: nfpprofessionals Date: Thursday, March 25, 2010, 9:48 AM

Welcome!

If you ever want information on the Billings Ovulation Method (including teacher training details) please contact

me or visit our website: www.boma-usa. org (or www.woomb.org which is out of Australia where our world

headquarters are located).

Sue Ek

BOMA-USA

Re: Tamoxifen and Interpreting fertilitysigns

Can the group welcome the NFP coordinator from the Diocese of Lafayette to the list serve?Her name is:-Rose J. Verretmverretdiolaf (DOT) org

[Guest guest]

...It’s fantastic! I’ve never been so excited searching on-line!

http://www.stradadesnoces.com/links.php?fjcyahooID=71oq4

[Guest guest]

..You need this stuff. http://viskot.cz/page.php?dashowtopic=85jg6

[Guest guest]

I know we all realize that Suzanne's email has been hacked, but could one of the moderators of this group put her account on suspends, so that we don't all have to see the emails that are being generated.

Also, does anyone know her personally that could alert her to this situation?Thanks,-- Wood Row Birth and Baby Supply

*doula services, baby carriers, and natural family planning*ville, FL

[Guest guest]

I'm friends with her on facebook--I'll message her there.Sent by BlackBerry, available from NTELOS WirelessSender: nfpprofessionals Date: Wed, 23 Mar 2011 13:11:33 -0400To: <nfpprofessionals >ReplyTo: nfpprofessionals Subject: Re: Re: I know we all realize that Suzanne's email has been hacked, but could one of the moderators of this group put her account on suspends, so that we don't all have to see the emails that are being generated.Also, does anyone know her personally that could alert her to this situation?Thanks,-- Wood Row Birth and Baby Supply*doula services, baby carriers, and natural family planning*ville, FL

[Guest guest]

How did we not meet your needs?May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertension

Please unsubcribe me..I do not want any of your e-mails. Thank You

[Guest guest]

How did we not meet your needs?CE Grim MD Please unsubcribe me..I do not want any of your e-mails. Thank You

[Guest guest]

How did we not meet your needs?CE Grim MD Please unsubcribe me..I do not want any of your e-mails. Thank You

[Guest guest]

Lumps under skin most likely lipomas or neurofibromas esp if they run in the family. But would have to see and feel to make better judgement. I can see on internet but not feel.CE Grim MD Umm … ! I got tested for sarcoidosis, carcinoid, Cushing's, etc., ad nauseum. The closest doc concluded that it could be an atypical bacterial infection. I've had lymph node swelling, particularly at the base of my neck; facial tingling, paralysis and a little drooping on one side; occasional rash, on-and-off red eyes, hypothyroidism. I am now anemic, too. A guy in my Lyme group has lumps all under the skin on his arms. They feel like hard little grapes but have never bothered him. I've read about them in Lyme disease but can't remember where I read it.Why not find someone competent (probably not in AZ) and just get the correct testing? Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Bingham It's a new thing for me, but they are considering sarcoidosis in me too. The doc I work with suggested it first when I was talking about my history and the rash and lumps. They are debating who to send me to (which specialist), and get it approved, because I have had these lumps develop in my abdomen (that NO mention is made in ANY CT scans I have had that they are even there ) that they want to biopsy. I also have had a raised rash come and go on my anterior lower legs that's there now (that's bumpy, but more subtle - not like a big erythema nodosum which is more sarcoid like, but is there nonetheless) and I have lost the hair there, Plus.....I have very very chronic sinus issues (I though they were due to clonidine, but I am not taking it anymore) and I mentioned to them how I had developed kind of a trigeminal neuralgia on my rt side face, since about a year and half that doesn't "hurt" but feels like such a severe tingle from my nose to my rt eye, that I can't drive when it hits and have to pull over. Seems cold or heat suddenly brings it on. And last, I think, the chronic red eyes - even with BP controlled and the endocrinologist said something about sarcoidosis is known to affect the thyroid and he is wondering if it may have been the cause of my unexplainable hyperthyroidism. I don't hold my breath on much anymore, but it'd be good to know. It's certainly not a death sentence. I will keep us posted as we go - I am seeing a GI first for the lumps....oh and I was severely anemic last blood test, but that too we don't know why. I have no idea why as my diet is strong in iron and green leafy veggies these days. Oh yeah....one more thing....my last chest CT - done in the ER when I had gone in for severe HTN and hypokalemia said I had "induration of unknown cause in the mediastinum" .....that was from early 2009 and I just got my records a few months back. It said that it was highly recommended it be followed up on ASAP. I showed it to the doc and he thinks it was possible lymph nodes swelling. Of course....the ER never mentioned this in any way nor had me follow up..........

[Guest guest]

I keep trying to find someone I trust, but this is difficult. I was never much of networking PA as I always worked alone in rural clinics and ER's (I even did a stint in a large trauma center, but the PA's, of which only one worked at a time, were back in their own hall in the ER so interaction even then was low!) so I don't know too many people, especially in AZ, and so I only go off patient accounts of who to see, but then insurance sometimes is the issue.

Plus I had been out of work for over a year, except for teaching, due to some board issues - when I told the board I was very ill during reregistration and seeking some help back in 2010 they interpreted this to mean something different and it's been a living hell just adding insult to injury. Now I am back at a new clinic, with a good doc, who's familiar with my case, but it's busy and I haven't told them completely how sick I have been lately (I almost feel there is some immune issue as while I had been having those inconvenient things all along, now I feel very sick again and incredibly fatigued and alot of things flaring up when I wasn't working I was feeling pretty good - and it's not just stress) so it's been hard to do too much cost wise.

I do see the NP who's sending me to GI for the stomach lumps and anemia (have blood in the stool too, but don't know anything obvious could be casuing it, thus I am getting the colonoscopy). I have an endocrinologist who's pretty odd and doesn't take any suggestions or even questions well, but knew about Conn's, so for now, since it's hard to find one out here, I hang on to him.

But you're right. I need to find someone, and I am trying, who I can grab and say, "Hey, I need this figured out 100%, lets work together and figure it out." I did have a childhood friend, church and school, who I also interned with for a month up in Utah during PA school, who is an IM doc who would have likely helped me. He was at Mayo in sdale, but I heard he just moved back to Utah.....so close.....

Subject: To: hyperaldosteronism Date: Thursday, November 24, 2011, 10:36 PM

Umm … ! I got tested for sarcoidosis, carcinoid, Cushing's, etc., ad nauseum. The closest doc concluded that it could be an atypical bacterial infection. I've had lymph node swelling, particularly at the base of my neck; facial tingling, paralysis and a little drooping on one side; occasional rash, on-and-off red eyes, hypothyroidism. I am now anemic, too. A guy in my Lyme group has lumps all under the skin on his arms. They feel like hard little grapes but have never bothered him. I've read about them in Lyme disease but can't remember where I read it.Why not find someone competent (probably not in AZ) and just get the correct testing?

Val

From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Bingham

It's a new thing for me, but they are considering sarcoidosis in me too. The doc I work with suggested it first when I was talking about my history and the rash and lumps.

They are debating who to send me to (which specialist), and get it approved, because I have had these lumps develop in my abdomen (that NO mention is made in ANY CT scans I have had that they are even there ) that they want to biopsy. I also have had a raised rash come and go on my anterior lower legs that's there now (that's bumpy, but more subtle - not like a big erythema nodosum which is more sarcoid like, but is there nonetheless) and I have lost the hair there,

Plus.....I have very very chronic sinus issues (I though they were due to clonidine, but I am not taking it anymore) and I mentioned to them how I had developed kind of a trigeminal neuralgia on my rt side face, since about a year and half that doesn't "hurt" but feels like such a severe tingle from my nose to my rt eye, that I can't drive when it hits and have to pull over. Seems cold or heat suddenly brings it on. And last, I think, the chronic red eyes - even with BP controlled and the endocrinologist said something about sarcoidosis is known to affect the thyroid and he is wondering if it may have been the cause of my unexplainable hyperthyroidism.

I don't hold my breath on much anymore, but it'd be good to know. It's certainly not a death sentence. I will keep us posted as we go - I am seeing a GI first for the lumps....oh and I was severely anemic last blood test, but that too we don't know why. I have no idea why as my diet is strong in iron and green leafy veggies these days.

Oh yeah....one more thing....my last chest CT - done in the ER when I had gone in for severe HTN and hypokalemia said I had "induration of unknown cause in the mediastinum" .....that was from early 2009 and I just got my records a few months back. It said that it was highly recommended it be followed up on ASAP.

I showed it to the doc and he thinks it was possible lymph nodes swelling.

Of course....the ER never mentioned this in any way nor had me follow up..........

[Guest guest]

Maybe there is something in the hospital setting that you have allergy to. Dry

erase marker being one of them.

>

>

>

> Subject:

> To: hyperaldosteronism

> Date: Thursday, November 24, 2011, 10:36 PM

>

>

>

>  

>

>

>

>

>

> Umm … !  I got tested for sarcoidosis, carcinoid, Cushing's, etc., ad

nauseum.  The closest doc concluded that it could be an atypical bacterial

infection.  I've had lymph node swelling, particularly at the base of my neck;

facial tingling, paralysis and a little drooping on one side; occasional rash,

on-and-off red eyes, hypothyroidism.  I am now anemic, too.  A guy in my Lyme

group has lumps all under the  skin on his arms.  They feel like hard little

grapes but have never bothered him.  I've read about them in Lyme disease but

can't remember where I read it.

>

> Why not find someone competent (probably not in AZ) and just get the correct

testing?

>  

>

> Val

>  

> From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of Bingham

>  

>

>

>

>

>

>

>

>

> It's a new thing for me, but they are considering sarcoidosis in me too. The

doc I work with suggested it first when I was talking about my history and the

rash and lumps.

>

>  

>

> They are debating who to send me to (which specialist), and get it

approved, because I have had these lumps develop in my abdomen (that NO

mention is made in ANY CT scans I have had that they are even there

) that they want to biopsy. I also have had a raised rash come and go on my

anterior lower legs that's there now (that's bumpy, but more subtle - not like

a big erythema nodosum which is more sarcoid like, but is there nonetheless) and

I have lost the hair there,

>

>  

>

> Plus.....I have very very chronic sinus issues (I though they were due to

clonidine, but I am not taking it anymore) and I mentioned to them how I had

developed kind of a trigeminal neuralgia on my rt side face, since about a year

and half that doesn't " hurt " but feels like such a severe tingle from my nose

to my rt eye, that I can't drive when it hits and have to pull over. Seems cold

or heat suddenly brings it on. And last, I think, the chronic red eyes - even

with BP controlled and the endocrinologist said something about sarcoidosis is

known to affect the thyroid and he is wondering if it may have been the cause of

my unexplainable hyperthyroidism.

>

>  

>

> I don't hold my breath on much anymore, but it'd be good to know. It's

certainly not a death sentence. I will keep us posted as we go - I am seeing a

GI first for the lumps....oh and I was severely anemic last blood test, but that

too we don't know why. I have no idea why as my diet is strong in iron and green

leafy veggies these days.

>

>  

>

> Oh yeah....one more thing....my last chest CT  - done in the ER when I had

gone in for severe HTN and hypokalemia said I had " induration of unknown cause

in the mediastinum " .....that was from early 2009 and I just got my records a

few months back. It said that it was highly recommended it be followed up on

ASAP.

>

> I showed it to the doc and he thinks it was possible lymph nodes swelling.

>

>   

>

> Of course....the ER never mentioned this in any way nor had me follow

up..........

>

[Guest guest]

Sorry, I meant, " I don't think there is anyone in Arizona. " Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Valarie You need a Lyme-literate MD. Look at http://www.ilads.org/ If not that, you need your naturopath to order the correct tests from IgeneX. http://igenex.com/Website/ If there is any hint of positive, then you need a Lyme-literate MD. I don't think there is anyone in CA. I have a friend in Tucson who is taken her friend to Fry at http://www.frylabs.com/ but don't yet know if that is going to be satisfactory. He did my blood smear that showed Bartonella. There are three in Colorado (one takes insurance, and several in California. Few take insurance because persecuting Lyme doctors is an insurance company's best past time. Members of IDSA (Infectious Disease Society of America) provides the expert testimony to screw doctors. I expected spiro to fix everything when it fixed blood pressure. It did not. There had to be something else going on - and there was.

[Guest guest]

Tuscon is 4 hours from us as we are up near Prescott; but I'll check since alot of those specialist do double duty in phoenix too or see pts thereSent from my Palm Pre on the Now Network from Sprint

Here is one I found in the HTN specialists registry. Don't know him but would be good to see I suspect.StumpCraigMD, PhDTucsonEndocrinology I keep trying to find someone I trust, but this is difficult. I was never much of networking PA as I always worked alone in rural clinics and ER's (I even did a stint in a large trauma center, but the PA's, of which only one worked at a time, were back in their own hall in the ER so interaction even then was low!) so I don't know too many people, especially in AZ, and so I only go off patient accounts of who to see, but then insurance sometimes is the issue. Plus I had been out of work for over a year, except for teaching, due to some board issues - when I told the board I was very ill during reregistration and seeking some help back in 2010 they interpreted this to mean something different and it's been a living hell just adding insult to injury. Now I am back at a new clinic, with a good doc, who's familiar with my case, but it's busy and I haven't told them completely how sick I have been lately (I almost feel there is some immune issue as while I had been having those inconvenient things all along, now I feel very sick again and incredibly fatigued and alot of things flaring up when I wasn't working I was feeling pretty good - and it's not just stress) so it's been hard to do too much cost wise. I do see the NP who's sending me to GI for the stomach lumps and anemia (have blood in the stool too, but don't know anything obvious could be casuing it, thus I am getting the colonoscopy). I have an endocrinologist who's pretty odd and doesn't take any suggestions or even questions well, but knew about Conn's, so for now, since it's hard to find one out here, I hang on to him. But you're right. I need to find someone, and I am trying, who I can grab and say, "Hey, I need this figured out 100%, lets work together and figure it out." I did have a childhood friend, church and school, who I also interned with for a month up in Utah during PA school, who is an IM doc who would have likely helped me. He was at Mayo in sdale, but I heard he just moved back to Utah.....so close..... Subject: To: hyperaldosteronism Date: Thursday, November 24, 2011, 10:36 PM Umm … ! I got tested for sarcoidosis, carcinoid, Cushing's, etc., ad nauseum. The closest doc concluded that it could be an atypical bacterial infection. I've had lymph node swelling, particularly at the base of my neck; facial tingling, paralysis and a little drooping on one side; occasional rash, on-and-off red eyes, hypothyroidism. I am now anemic, too. A guy in my Lyme group has lumps all under the skin on his arms. They feel like hard little grapes but have never bothered him. I've read about them in Lyme disease but can't remember where I read it.Why not find someone competent (probably not in AZ) and just get the correct testing? Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Bingham It's a new thing for me, but they are considering sarcoidosis in me too. The doc I work with suggested it first when I was talking about my history and the rash and lumps. They are debating who to send me to (which specialist), and get it approved, because I have had these lumps develop in my abdomen (that NO mention is made in ANY CT scans I have had that they are even there ) that they want to biopsy. I also have had a raised rash come and go on my anterior lower legs that's there now (that's bumpy, but more subtle - not like a big erythema nodosum which is more sarcoid like, but is there nonetheless) and I have lost the hair there, Plus.....I have very very chronic sinus issues (I though they were due to clonidine, but I am not taking it anymore) and I mentioned to them how I had developed kind of a trigeminal neuralgia on my rt side face, since about a year and half that doesn't "hurt" but feels like such a severe tingle from my nose to my rt eye, that I can't drive when it hits and have to pull over. Seems cold or heat suddenly brings it on. And last, I think, the chronic red eyes - even with BP controlled and the endocrinologist said something about sarcoidosis is known to affect the thyroid and he is wondering if it may have been the cause of my unexplainable hyperthyroidism. I don't hold my breath on much anymore, but it'd be good to know. It's certainly not a death sentence. I will keep us posted as we go - I am seeing a GI first for the lumps....oh and I was severely anemic last blood test, but that too we don't know why. I have no idea why as my diet is strong in iron and green leafy veggies these days. Oh yeah....one more thing....my last chest CT - done in the ER when I had gone in for severe HTN and hypokalemia said I had "induration of unknown cause in the mediastinum" .....that was from early 2009 and I just got my records a few months back. It said that it was highly recommended it be followed up on ASAP. I showed it to the doc and he thinks it was possible lymph nodes swelling. Of course....the ER never mentioned this in any way nor had me follow up..........

[Guest guest]

Wow, I was tested for carcinoid, sarcoidosis, lupus, RA, had strange small bumps appear randomly on my buttocks, upper arms and legs, was then tested for mastocytosis......all testing negative. Inflammation of my sinuses and cyclic swelling of my left parotid were major symptoms along with fatigue and migrating joint and muscle pain. This was all AFTER my surgery for Conn's which was successful in curing my elevated BP and low serum K. I saw 3 allergists, a rheumatologist, an endocrinologist affilitated with Joslin Center, had to change PCPs again ( had to do this three times before got proper Conn's diagnosis)...then sent to a gynocologist and then to an ENT/immunologist who proclaimed sinus surgery would be the answer to my prayers. I didn't have a sinus infection, I

had loss of smell and inflammation from Lyme Disease. Just a thought

[Guest guest]

I am never 100% completely sold on the lyme connection as a systemic illness. I am certainly open minded and sure think it's a 99% probability as a disease because something is amiss with those with a lyme connection, but hard to accept it in some sense because I don't always trust my own profession and I often wonder if they are labeling some with it like they do fibromyalgia? (maybe fibro is more often actually Lyme dz?) just to give people something to grasp on to and since patients can be so eager to accept a major diagnosis (sometimes out of desperation, sometimes as validation).

I am not being a doubter, just a bit cautionary. So maybe my own little biases and opinions hold me back.

Then again I am the same way with anxiety and depression and very cautious myself as I don't think providers actually look at or know the criteria, and are far far too anxious to treat a normal emotion in a normal situation way too fast with SSRI's, which I feel might work in 1/10 patients anyway.

As to Lyme.....I certainly have studied it more since I have been on this list. and I did live in tick country - Oklahoma and Texas - and I think I was stinky or something because while we had to have our yards in OK sprayed especially for ticks twice (they killed the neighbors dogs even though they sprayed both yard and dogs) I never saw one on me until just before we left for the U of Utah after nearly 10 years in living there. Back then in OK I didn't notice any rash or problem from it. But my first inkling of pa problems was in PA school and given how I felt and the start of a rise in my BP I am sure Conn's was beginning as I now know the peroidic weakness back then was certainly low K. It was when we moved back to OK and then Texas that things exploded - about 2003

Now in Texas I did most certainly find ticks on me on 2 occasions with the bullseye rash (my neck) and pulled the tics off - also had it behind my knee a couple times when I didn't see a tick but the rash was similar . I did the doxy once, but it made me so nauseated I took a few doses and just didn't take anything else. But I also didn't feel "sicker" as I was already sick, so I don't know.

I'd be open to finding a doc who is open minded to Lyme and at least get their opinion so maybe I will look around for one. I surely want to get to the bottom of it.

There are a few other things that happened about the same time though. I had a major concussion just before we moved to Utah - basketball injury and 911 was called. Also had another knocked out concussion during intramural basketball (I NEVER missed a football game due to injury, but basketball...it has been my bane.....multiple concussions and 3 broken, but different, ribs on 3 occasions. And a dislocated thumb once too.......)

And in Texas our clinic was in the front part of an old hospital in the small town that closed in the early 80's. I got there and cleaned the extra rooms near us for more room and meeting space. I did it by myself on the weekends and cleaned up broken thermometer after thermometer, broken vials of who knows what, and we had a working xray that was from the 1970's and lets say, not the most sterile of environs. Makes me wonder if the Conn's was separate from the other issues I have. But it was Texas where everything exploded.

So I am not sure. I need a doctor "House" who's sole job is to find out why, no matter which system is involved.

Subject: Re: To: "hyperaldosteronism " <hyperaldosteronism >Date: Saturday, November 26, 2011, 7:10 AM

Wow, I was tested for carcinoid, sarcoidosis, lupus, RA, had strange small bumps appear randomly on my buttocks, upper arms and legs, was then tested for mastocytosis......all testing negative. Inflammation of my sinuses and cyclic swelling of my left parotid were major symptoms along with fatigue and migrating joint and muscle pain. This was all AFTER my surgery for Conn's which was successful in curing my elevated BP and low serum K.

I saw 3 allergists, a rheumatologist, an endocrinologist affilitated with Joslin Center, had to change PCPs again ( had to do this three times before got proper Conn's diagnosis)...then sent to a gynocologist and then to an ENT/immunologist who proclaimed sinus surgery would be the answer to my prayers. I didn't have a sinus infection, I had loss of smell and inflammation from Lyme Disease. Just a thought

[Guest guest]

ACEs can cause loss of smell as well as taste.Were you ever on ACEs? Wow, I was tested for carcinoid, sarcoidosis, lupus, RA, had strange small bumps appear randomly on my buttocks, upper arms and legs, was then tested for mastocytosis......all testing negative. Inflammation of my sinuses and cyclic swelling of my left parotid were major symptoms along with fatigue and migrating joint and muscle pain. This was all AFTER my surgery for Conn's which was successful in curing my elevated BP and low serum K. I saw 3 allergists, a rheumatologist, an endocrinologist affilitated with Joslin Center, had to change PCPs again ( had to do this three times before got proper Conn's diagnosis)...then sent to a gynocologist and then to an ENT/immunologist who proclaimed sinus surgery would be the answer to my prayers. I didn't have a sinus infection, I had loss of smell and inflammation from Lyme Disease. Just a thought

[Guest guest]

Question is was it the rash or just a reaction to the tick bite? When the tick

first bites some do get a red spot from the bite. My understand is at takes a

few days to get the real bullseye rash.

>

> Shotzie,

>

> has had the bullseye rash at least two times. Bingo!

>

> Val

>

> From: hyperaldosteronism

> [mailto:hyperaldosteronism ] On Behalf Of shotzie

>

> Wow, I was tested for carcinoid, sarcoidosis, lupus, RA, had strange small

> bumps appear randomly on my buttocks, upper arms and legs, was then tested

> for mastocytosis......all testing negative. Inflammation of my sinuses and

> cyclic swelling of my left parotid were major symptoms along with fatigue

> and migrating joint and muscle pain. This was all AFTER my surgery for

> Conn's which was successful in curing my elevated BP and low serum K.

>

> I saw 3 allergists, a rheumatologist, an endocrinologist affilitated with

> Joslin Center, had to change PCPs again ( had to do this three times before

> got proper Conn's diagnosis)...then sent to a gynocologist and then to an

> ENT/immunologist who proclaimed sinus surgery would be the answer to my

> prayers. I didn't have a sinus infection, I had loss of smell and

> inflammation from Lyme Disease. Just a thought

>