Thank You

May 27, 2006

So cool!! So cool!!!

At 11:33 AM 5/26/2006 -0400, you wrote:

>>Dear Al,

>>

>>Thank you for replying. It is wonderful to recieve help in any way. I

>>will check out switching. Your intepretation of my hypothryroidism and

>>the trauma of needing to be small to hide feels absolutely right - I do

>>this all the time, even though I am a theatre performer. Thank you for

>>taking the time to help me find out more.

>>

>>Love

>>

>>Teifi

>>

>>Al Hartman <alhartman6@...> wrote:

>>Hi Teifi,

>>

>>It sounds to me like you are experiencing a form of " switching " . Your

>>body is going to your chi gong practice to clear yourself because you

>>are switched and don't trust your accessing.

>>

>>Believe it or not, your accessing is ALWAYS accurate, even when it

>>isn't. (Go to the 27th Dimension for this one!)

>>

>>You ALWAYS access what you need to access in the moment. Even an

>>inaccurate test teaches you something.

>>

>>Just trust your testing, and get a buddy to test with you.

>>

>>Having a buddy is one of the most basic ways to combat switching.

>>

>>And go to the section of the webcollege on switching or " being

>>switched " and work with it.

>>

>>As for Hypothyroidism, look for past lifetimes where you were

>>traumatized around hiding or being small and clear the traumas.

>>

>>I keep getting that the trauma is around being small, and needing to

>>be small and unobtrusive. See if that is helpful at all.

>>

>>Love,

>>Al

>>(Immune since 1993)

Your friend,

Bayard

http://www.TheCureDrive.org

32,000 cures and counting

September 12, 2006

>

> Thank you for making this list-serve! My name is Tortorelli -

I

> have 3 children, Pat has -Magenis Syndrome - which is on the ASD

> spectrum - He is 16 - will be 17 on 10/11

>

> I am the Coordinator of our local autsim support group and the new

1/2

> time coordinator for The Autism Project at the University of

Illinois.

>

> I am looking forward to sharing ideas with this group!

>

>Welcome, !

Ellen

September 12, 2006

Glad to have you join us--where do you live?

Marie

>

> Thank you for making this list-serve! My name is Tortorelli -

I

> have 3 children, Pat has -Magenis Syndrome - which is on the ASD

> spectrum - He is 16 - will be 17 on 10/11

>

> I am the Coordinator of our local autsim support group and the new

1/2

> time coordinator for The Autism Project at the University of

Illinois.

>

> I am looking forward to sharing ideas with this group!

>

September 13, 2006

I live in Champaign, Illinois

Tortorelli

Re: Thank You

Glad to have you join us--where do you live? Marie>> Thank you for making this list-serve! My name is Tortorelli - I> have 3 children, Pat has -Magenis Syndrome - which is on the ASD> spectrum - He is 16 - will be 17 on 10/11> > I am the Coordinator of our local autsim support group and the new 1/2> time coordinator for The Autism Project at the University of Illinois.> > I am looking forward to sharing ideas with this group!> > >

October 30, 2007

Thanks so much for all the great advice. I've had to avoid the

computer for awhile because my eyes flared up, but things are better

now so I'm back online again. I'm so new to this whole

spondyloarthritis thing and I'm trying to learn as much as I can about

it. I jotted down some of the info that you gave me...things I've

never heard of (like msm, cat's claw, what flax seed is for, etc.) to

do some research on. My goal for the coming week is to try to go

without the meds for awhile and just take natural supplements and see

how it goes. I've been told that I have to be careful going off

prednisone, so I'll ask the doctor about it when I see him tomorrow.

Anyway...just wanted to say thanks for caring and for answering my

question. I appreciate it.

I hope you all have a good, pain-free week!!! Take care.

-

December 21, 2007

Tami, that is such a shame. I shall really miss your contributions and support. You have been a great input to this site. Best of luck with your future... Becky xTami Klumpyan <tami@...> wrote: Thank you to all who have been helpful over the years. Please remove me from your list. Merry Christmas and a Safe and Happy New Year to you all. I sincerely mean that. Tami

Sent from - a smarter inbox.

December 21, 2007

I’m somewhat concerned at the people

who are leaving. They’ve been more than helpful, they’ve been an

important part of our lives.

From: samters [mailto:samters ] On Behalf Of Bannister

Sent: Friday, 21 December 2007

8:00 PM

samters

Subject: Re: thank you

Tami, that is such a shame. I shall really miss your contributions and

support. You have been a great input to this site. Best of luck with your

future...

Becky x

Tami Klumpyan

<tamipowerweb (DOT) net> wrote:

Thank you to all who have been helpful over the years.

Please remove me from your list. Merry Christmas and a

Safe and Happy New Year to you all. I sincerely mean that.

Tami

Sent from

- a smarter inbox.

No virus found in this incoming message.

Checked by AVG Free Edition.

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December 22, 2007

Tami, I'm not sure why this went the direction it did -- I don't know

if someone has written you personally and upset you (if so please let

me know because abuse is not allowed here). But I didn't see anything

on this list that would compel you to leave. I'm sorry if I am not

being sensitive and not seeing what it is.

I would prefer you to remove yourself from the list if you wish to by

signing in to (or on messages there may be a way to unsubscribe)--

we do not remove people except again for abuse/harassment and spam.

Of course I would prefer that you do not leave at all, your journey can

be very informative to others even if you don't have the " answers "

(none of us do) and I hope you know that.

Lori

December 22, 2007

I don't know what to do other than say that the list becomes intense at

times, many have left over the years but not announced it -- you

actually would not believe how many subscribe and unsubscribes we get

every week, every day.

I have left before, so is Ken, so have others.

Ken's original post on this was to emphasize that we have always chosen

to come back but I think his message about that got kind of lost in all

this!

Lori

December 22, 2007

Dear Lori,

This is getting blown way out of proportion. I apologize about announcing that I was leaving. I had thought this was how to be taken off the list. I'll take care of it.

What I was referring to about emotions, was a post that came in a few months back from ?. It was made very clear that he was sick of hearing the tear jerking stories etc. etc. etc. If I had the time, I'd see if the post was still on the site. That particular post was incredibly offensive to me, because I was one of the people who posted on an extremely tough day, many times. I took it personally that time. I also felt guilty for whining etc. That was a turning point with the site for me, as it may have been with others feeling equally bad about that post. The second post came this last week with the names used for the people that post, you know the silver bulleters etc. That's equally offensive to me, though this time I did not take it personally. You have got your priorities mixed up here. You are defending some members actions that are quite clearly inconsiderate and rude. I just wanted to peacefully leave the site. I'm not a confrontational person usually. And for the record, I don't care how much work people do for any cause, it should never justify rudeness. You know, there are alot of us that have been very sick, and when people post things with clear desperation (considered the whiny posts), that may be their final post before jumping off a bridge. You know how long I worried that that one post may have sent someone over the edge? I sincerely care for people and for their feelings.

Now I will peacefully leave, and again I truely wish everyone a Merry Christmas and a Safe, Healthy, and Happy New Year.

Sincerely,

Tami

Re: thank you

Tami, I'm not sure why this went the direction it did -- I don't know if someone has written you personally and upset you (if so please let me know because abuse is not allowed here). But I didn't see anything on this list that would compel you to leave. I'm sorry if I am not being sensitive and not seeing what it is.I would prefer you to remove yourself from the list if you wish to by signing in to (or on messages there may be a way to unsubscribe)--we do not remove people except again for abuse/harassment and spam. Of course I would prefer that you do not leave at all, your journey can be very informative to others even if you don't have the "answers" (none of us do) and I hope you know that.Lori

December 22, 2007

> From: " truelori " <lori@...>

.. . . snip . . .

>

> I have left before, so is Ken, so have others.

>

> Ken's original post on this was to emphasize that we have always chosen

> to come back but I think his message about that got kind of lost in all

> this!

Lori is right, of course.

Also, upon re-reading it, it occurs to me that some readers, getting an

e-mail but not seeing it in thread context, may not have realized that I

was directly responding to Karl's departure post.

Karl's contribution in and out of this group has been incredible, and the

occasion of his " departure " is, to me, profound, and deserved some sort of

acknowledgement. My acknowlegement was to agree with some of his points

(using some of his terminology) and to suggest that curmugeons, like me and

perhaps him, have their place; but, yes, this group remains one of the best

places to come to learn about Samters, and that includes our professional

medical resources.

December 22, 2007

I think what this comes down to is respect - for everyone. Maybe, if it's a "bad day and i need someone to hear me" post, we can have a subject lead in. That way those who don't want to read it don't have to. But what helps me clearly doesn't help all others and visa versa. This isn't politics or religion, though sometimes the extreme views makes me feel that way. On that note, I do have some good news to report on my health. I feel lucky in some ways as I've only struggled with this for 3 years. But it has been an intense struggle. I am on IVIG and after my 5th dose, I feel SO MUCH BETTER! My severe asthma is almost gone, my sinuses are cleared up and I have the energy I remember pre-samter's! I don't know if it'll last, but I'll say this is the best Christmas present I've ever received!!! MicheleTami Klumpyan

<tami@...> wrote: Dear Lori, This is getting blown way out of proportion. I apologize about announcing that I was leaving. I had thought this was how to be taken off the list. I'll take care of it. What I was referring to about emotions, was a post that came in a few months back from ?. It was made very clear that he was sick of hearing the tear jerking stories etc. etc. etc. If I had the time, I'd see if

the post was still on the site. That particular post was incredibly offensive to me, because I was one of the people who posted on an extremely tough day, many times. I took it personally that time. I also felt guilty for whining etc. That was a turning point with the site for me, as it may have been with others feeling equally bad about that post. The second post came this last week with the names used for the people that post, you know the silver bulleters etc. That's equally offensive to me, though this time I did not take it personally. You have got your priorities mixed up here. You are defending some members actions that are quite clearly inconsiderate and rude. I just wanted to peacefully leave the site. I'm not a confrontational person usually. And for the record, I don't care how much work people do for any cause, it should never justify rudeness. You know, there are alot of us that have been

very sick, and when people post things with clear desperation (considered the whiny posts), that may be their final post before jumping off a bridge. You know how long I worried that that one post may have sent someone over the edge? I sincerely care for people and for their feelings. Now I will peacefully leave, and again I truely wish everyone a Merry Christmas and a Safe, Healthy, and Happy New Year. Sincerely, Tami Re: thank you Tami, I'm not sure why this went the direction it did -- I don't know if someone has written you personally and upset you (if so please let me know because abuse is not allowed here). But I didn't see anything on this list that would compel you to leave. I'm sorry if I am not being sensitive and not seeing what it is.I would prefer you to remove yourself from the list if you wish to by signing in to (or on messages there may be a way to unsubscribe)--we do not remove people except again for abuse/harassment and spam. Of course I would prefer that you do not leave at all, your journey can be very informative to others even if you don't have the "answers" (none of us do) and I hope you know that.Lori

Looking for last minute shopping deals? Find them fast with Search.

December 23, 2007

That's great news Michele!! It's good to hear when people are doing well, gives us all hope! I was really hoping for a sense of smell this Christmas - that would be my best Christmas present! Beckymichele <truekindandhappy@...> wrote: I think what this comes down to is respect - for everyone. Maybe, if it's a "bad day and i need someone to hear me" post, we can have a subject lead in. That way those who don't want to read it don't have to. But what helps me clearly doesn't help

all others and visa versa. This isn't politics or religion, though sometimes the extreme views makes me feel that way. On that note, I do have some good news to report on my health. I feel lucky in some ways as I've only struggled with this for 3 years. But it has been an intense struggle. I am on IVIG and after my 5th dose, I feel SO MUCH BETTER! My severe asthma is almost gone, my sinuses are cleared up and I have the energy I remember pre-samter's! I don't know if it'll last, but I'll say this is the best Christmas present I've ever received!!! MicheleTami Klumpyan <tamipowerweb (DOT) net> wrote: Dear Lori, This is getting blown way out of proportion. I

apologize about announcing that I was leaving. I had thought this was how to be taken off the list. I'll take care of it. What I was referring to about emotions, was a post that came in a few months back from ?. It was made very clear that he was sick of hearing the tear jerking stories etc. etc. etc. If I had the time, I'd see if the post was still on the site. That particular post was incredibly offensive to me, because I was one of the people who posted on an extremely tough day, many times. I took it personally that time. I also felt guilty for whining etc. That was a turning point with the site for me, as it may have been with others feeling equally bad about that post. The second post came this last week with the names used for the people that post, you know the silver bulleters etc. That's equally offensive to me, though this time I did not take it

personally. You have got your priorities mixed up here. You are defending some members actions that are quite clearly inconsiderate and rude. I just wanted to peacefully leave the site. I'm not a confrontational person usually. And for the record, I don't care how much work people do for any cause, it should never justify rudeness. You know, there are alot of us that have been very sick, and when people post things with clear desperation (considered the whiny posts), that may be their final post before jumping off a bridge. You know how long I worried that that one post may have sent someone over the edge? I sincerely care for people and for their feelings. Now I will peacefully leave, and again I truely wish everyone a Merry Christmas and a Safe, Healthy, and Happy New Year. Sincerely, Tami -----

Original Message ----- From: truelori samters Sent: Saturday, December 22, 2007 2:12 AM Subject: Re: thank you Tami, I'm not sure why this went the direction it did -- I don't know if someone has written you personally and upset you (if so please let me know because abuse is not allowed here). But I didn't see anything on this list that would compel you to leave. I'm sorry if I am not being sensitive and not seeing what it is.I would prefer you to remove yourself from the list if you

wish to by signing in to (or on messages there may be a way to unsubscribe)--we do not remove people except again for abuse/harassment and spam. Of course I would prefer that you do not leave at all, your journey can be very informative to others even if you don't have the "answers" (none of us do) and I hope you know that.Lori Looking for last minute shopping deals? Find them fast with Search.

Support the World Aids Awareness campaign this month with for Good

December 23, 2007

Hi Becky! Thank you.... Yes, I feel so GOOD! I can't believe it!!! I was really beginning to think there was no hope for me. I can smell things... and breath. I wake up in the morning and just breath and smile. I use to wake up reaching for the Zyflo and inhaler. Now my Zyflo is down to 1/2 my usual dose. I also walk around and take a deep breaths. Something I couldn't do before without coughing or having an asthma attack. I wish everyone good health. I think this group is a great way to find it! I know the probiotics everyone spoke about help me!! and so do many of the other things mentioned on this group. Michele Bannister <beckyb256@...> wrote: That's great news Michele!! It's good to hear when people are doing well, gives us all hope! I was really hoping for a sense of smell this Christmas - that would be my best Christmas present! Beckymichele <truekindandhappy > wrote: I think what this comes down to is respect - for everyone. Maybe, if it's a "bad day and i need someone to hear me" post, we can have a subject lead in. That way those who don't want to read it don't have to. But what helps me clearly doesn't help all others and visa versa. This isn't politics or

religion, though sometimes the extreme views makes me feel that way. On that note, I do have some good news to report on my health. I feel lucky in some ways as I've only struggled with this for 3 years. But it has been an intense struggle. I am on IVIG and after my 5th dose, I feel SO MUCH BETTER! My severe asthma is almost gone, my sinuses are cleared up and I have the energy I remember pre-samter's! I don't know if it'll last, but I'll say this is the best Christmas present I've ever received!!! MicheleTami Klumpyan <tamipowerweb (DOT) net> wrote: Dear Lori, This is getting blown way out of proportion. I apologize about announcing that I was leaving. I had

thought this was how to be taken off the list. I'll take care of it. What I was referring to about emotions, was a post that came in a few months back from ?. It was made very clear that he was sick of hearing the tear jerking stories etc. etc. etc. If I had the time, I'd see if the post was still on the site. That particular post was incredibly offensive to me, because I was one of the people who posted on an extremely tough day, many times. I took it personally that time. I also felt guilty for whining etc. That was a turning point with the site for me, as it may have been with others feeling equally bad about that post. The second post came this last week with the names used for the people that post, you know the silver bulleters etc. That's equally offensive to me, though this time I did not take it personally. You have got your priorities mixed up here. You are

defending some members actions that are quite clearly inconsiderate and rude. I just wanted to peacefully leave the site. I'm not a confrontational person usually. And for the record, I don't care how much work people do for any cause, it should never justify rudeness. You know, there are alot of us that have been very sick, and when people post things with clear desperation (considered the whiny posts), that may be their final post before jumping off a bridge. You know how long I worried that that one post may have sent someone over the edge? I sincerely care for people and for their feelings. Now I will peacefully leave, and again I truely wish everyone a Merry Christmas and a Safe, Healthy, and Happy New Year. Sincerely, Tami Re: thank you Tami, I'm not sure why this went the direction it did -- I don't know if someone has written you personally and upset you (if so please let me know because abuse is not allowed here). But I didn't see anything on this list that would compel you to leave. I'm sorry if I am not being sensitive and not seeing what it is.I would prefer you to remove yourself from the list if you wish to by signing in to (or on messages there may be a way to

unsubscribe)--we do not remove people except again for abuse/harassment and spam. Of course I would prefer that you do not leave at all, your journey can be very informative to others even if you don't have the "answers" (none of us do) and I hope you know that.Lori Looking for last minute shopping deals? Find them fast with Search. Support the World Aids Awareness campaign this month with for Good

Never miss a thing. Make your homepage.

July 16, 2008

Begin forwarded message:

> From: " Steve " <oboczky1519@...>

> Date: July 16, 2008 11:05:52 AM PDT

> rick.hahn@...

> Subject: Thank you

>

> If you have time could you just answer a few quick questions?

> First, from the onset of your symptoms how long did it take before the

> symptoms were at there worst?

I can't really remember. I know it started with back aches and eye

inflamation. By five or six months I remember telling the Doctor that

there wasn't a joint in my body that wasn't in pain.

> When you had a remission did the

> problems get slowly better or just all go away quickly

Slowly as it started.

> Finally, when

> you do have problems come back do they get worse each time or are they

> about the same?

About the same and they are mild comparatively.

>

> I realize each person can be different but hearing your story is

> very helpfull. God Bless. Steve

>

No problem. God Bless.

Rick

August 8, 2008

>,

I read your blog almost daily and am so excited about the new good

news. As my husband and I face treatment decisions in the next year or

so, following your story and others help us keep our minds open. We

hope soon CLL will be an inconvenience you experienced long ago and

you'll enjoy the wonderful family you are surrounded by.

Thank you for generously sharing your experience.

> Friends,

> For those of you who are not reading my blog regularly, I wanted to

> thank you through this medium for the support you have offered me.

> The post entitled " running,wishing he could fly " is a big thank you

to

> you all at bkoffman.blogspot.com It details the depth and breadth of

> what you have done for me. You might enjoy reading it.

> I got the news today that my engraftment is progressing slowing in

the

> right direction 30 days post transplant. This is all good news

> Be well and thanks

>

March 2, 2009

I first found this site in November, 2008. I had my first operation(s) for treatment of scolosis in 1976 at age 25. I have a Harrington Rod and fusion. After seeing my surgeons regularly the first two years after surgery, I was told to check back every 5 years unless I had a problem. I saw them every five years, the last visit in November, 2008. I started having increased pain about 5 years ago and started taking Relafin and occasionally Tylenol 3 for "arthritis"and general pain from the scolosis.

Before my last appointment in November, I began to diligently search for answers to the ever increasing pain levels. I confess to being a "lurker." I have read your posts and gleaned valuable information. I cannot thank you enough. After being told I did not have flatback and that I might want to consider epidural injections, I contacted Dr. Ondra's office for an appointment. I sent my latest MRI to his office and saw Dr. Ondra on February 9. After x-rays, I had a consult with him and had the option of seeing Dr. Koski later that day.

I will be having surgery on April 8 with Dr. Koski. They will remove a portion of my harrington rod and fuse to L-5. To all of you who are years out from your surgery and still continue to share your stories and wisdom, again thank you. It's hard to condense a life experience of scolosis in a email that seems long already, but if anything in my experience could help someone I'd love to share. I wish I had joined the conversation in earnest in November. I'm not sure I have an explanation for that except maybe denial that your stories were also mine. Whatever the reason it will feel good to click send. Lois

From: rebeccamaas <rebeccamaas@...>Subject: Re: Revision surgery for high-risk patients Date: Friday, November 7, 2008, 2:19 PM

Hi! I know you asked for more information, but she has very limited computer access for a while. I had my revision surgeries last year with Dr. Ondra's partner - Dr. Tyler Koski. They are both located in Chicago at Northwestern Memorial Hospital. In addition to being highly skilled, both of them have excellent and compassionate bedside manners, which is a great asset.Anyways, when I contacted them in December of 2006, I was told that it would be a 3 to 6 month waiting period to make an appointment. HOWEVER, if you are a complex spine patient (which we are), they have a special clinic to get those patients in much faster. All that was needed was to fax in a copy of a recent x-ray report (or other imaging report). I also typed up a short letter explaining my medical history. I faxed the report & letter on a Friday afternoon. His nurse called me on the following Monday afternoon, and

I had a patient for the next week Tuesday - only about a week and a half after I had faxed my info to them! They're a bit busier now, so I think it's more realistic to expect to get an appointment within a few weeks or a month. They have a new nurse now - - who is very nice. I only saw her at my one year post-op followup appointment last summer, but she was very helpful. If you'd like more info on this program, I would suggest calling and requesting to speak with Dr Ondra's nurse . If they want to know why, state that you would like to speak with her to find more info on their high-risk spine surgery program (or whatever called it, sorry I can't remember at the moment). Or, if you'd rather just make an appointment to speak with the surgeons then call them, fax your info, and wait for a call back to schedule an appointment.Good luck with it. Please let us

know how things go if you decide to call them. I had a great experience there, and am always hoping that others do too.Northwestern Memorial Hospital, Dept of Neurological Surgery312/695-8143 phone312/695-4075 fax>> , can you tell me who I would contact to get more information > on this program?>

March 2, 2009

Hi Lois,

I'm so glad for you that you've found a doctor who has a solution for you! Your surgery is right around the corner! I know what you mean about this site...it has been such a wonderful support system for me, too. I had my fusion with the harrington rod in 1983 when I was in 10th grade. I'm having terrible pain issues and am currently looking for a surgeon to help me. I had seen Dr.Boachie in NY and am going to see Dr.Bridwell in St.Louis in 2 weeks.

Please stay in touch with this forum and let us all know how you're doing!

take care,

lauren

From: "lois.dougherty@..." <lois.dougherty@...> Sent: Monday, March 2, 2009 4:43:16 PMSubject: Re: Thank you

I first found this site in November, 2008. I had my first operation(s) for treatment of scolosis in 1976 at age 25. I have a Harrington Rod and fusion. After seeing my surgeons regularly the first two years after surgery, I was told to check back every 5 years unless I had a problem. I saw them every five years, the last visit in November, 2008. I started having increased pain about 5 years ago and started taking Relafin and occasionally Tylenol 3 for "arthritis"and general pain from the scolosis.

Before my last appointment in November, I began to diligently search for answers to the ever increasing pain levels. I confess to being a "lurker." I have read your posts and gleaned valuable information. I cannot thank you enough. After being told I did not have flatback and that I might want to consider epidural injections, I contacted Dr. Ondra's office for an appointment. I sent my latest MRI to his office and saw Dr. Ondra on February 9. After x-rays, I had a consult with him and had the option of seeing Dr. Koski later that day.

I will be having surgery on April 8 with Dr. Koski. They will remove a portion of my harrington rod and fuse to L-5. To all of you who are years out from your surgery and still continue to share your stories and wisdom, again thank you. It's hard to condense a life experience of scolosis in a email that seems long already, but if anything in my experience could help someone I'd love to share. I wish I had joined the conversation in earnest in November. I'm not sure I have an explanation for that except maybe denial that your stories were also mine. Whatever the reason it will feel good to click send. Lois

From: rebeccamaas <rebeccamaas>Subject: Re: Revision surgery for high-risk patientsFeistyScolioFlatbac kers@groups .comDate: Friday, November 7, 2008, 2:19 PM

Hi! I know you asked for more information, but she has very limited computer access for a while. I had my revision surgeries last year with Dr. Ondra's partner - Dr.. Tyler Koski. They are both located in Chicago at Northwestern Memorial Hospital. In addition to being highly skilled, both of them have excellent and compassionate bedside manners, which is a great asset.Anyways, when I contacted them in December of 2006, I was told that it would be a 3 to 6 month waiting period to make an appointment. HOWEVER, if you are a complex spine patient (which we are), they have a special clinic to get those patients in much faster. All that was needed was to fax in a copy of a recent x-ray report (or other imaging report). I also typed up a short letter explaining my medical history. I faxed the report & letter on a Friday afternoon. His nurse called me on the following Monday afternoon, and

I had a patient for the next week Tuesday - only about a week and a half after I had faxed my info to them! They're a bit busier now, so I think it's more realistic to expect to get an appointment within a few weeks or a month. They have a new nurse now - - who is very nice. I only saw her at my one year post-op followup appointment last summer, but she was very helpful. If you'd like more info on this program, I would suggest calling and requesting to speak with Dr Ondra's nurse . If they want to know why, state that you would like to speak with her to find more info on their high-risk spine surgery program (or whatever called it, sorry I can't remember at the moment). Or, if you'd rather just make an appointment to speak with the surgeons then call them, fax your info, and wait for a call back to schedule an appointment.Good luck with it. Please let us

know how things go if you decide to call them. I had a great experience there, and am always hoping that others do too.Northwestern Memorial Hospital, Dept of Neurological Surgery312/695-8143 phone312/695-4075 fax>> , can you tell me who I would contact to get more information > on this program?>

March 3, 2009

Hi

Annie

First

and foremost, I would write a letter to your GP telling him exactly how you

feel. List your symptoms and signs (look in our web site www.tpa-uk.org.uk and click on Hypothyroidism

and on the drop down menu, open Symptoms and Signs. Check yours against these.

List your basal temperature for say 4 to 5 days. Take your temperature first

thing before getting out of bed. Normal temperature is 98.6 degrees F and if

yours is 97.8 (or less), this is an indication you have a low metabolism and

indicative of hypothyroidism. List any members of your family who have a

thyroid or autoimmune disease as it runs in families. Tell him you would like

some blood tests to use as a process of elimination. The tests you need are

TSH, Free T4, Free T3 and also a test to see if you have antibodies to your

thyroid. You need your Ferritin (stored iron) checked, B12, Vit. D, Magnesium, Zinc

and Copper. You need these checked because if any of them are running low, your

thyroid hormone will not be getting properly absorbed. List all the

medications and supplements you are taking. Tell him that because of your

symptoms, you wish to be referred to an endocrinologist for a second

opinion. Ask that the letter be placed in your medical notes and send a

copper to the Practice Manager.

We

find you can get much more done when you put it in writing.

Luv -

Sheila

Hi Sheila

Thank you for sharing your knowledge with me, I certainly feel like a

novice. However, that is something I hope to change. My first step is

go back to my GP and be more assertive about how I am feeling. I will

also work my way through the information you have provided. I am

determined to regain my health.

March 4, 2009

>

> Hi Annie

>

> First and foremost, I would write a letter to your GP telling him exactly

> how you feel. List your symptoms and signs (look in our web site

> www.tpa-uk.org.uk and click on Hypothyroidism and on the drop down menu,

> open Symptoms and Signs. Check yours against these. List your basal

> temperature for say 4 to 5 days. Take your temperature first thing before

> getting out of bed. Normal temperature is 98.6 degrees F and if yours is

> 97.8 (or less), this is an indication you have a low metabolism and

> indicative of hypothyroidism. List any members of your family who have a

> thyroid or autoimmune disease as it runs in families. Tell him you would

> like some blood tests to use as a process of elimination. The tests you need

> are TSH, Free T4, Free T3 and also a test to see if you have antibodies to

> your thyroid. You need your Ferritin (stored iron) checked, B12, Vit. D,

> Magnesium, Zinc and Copper. You need these checked because if any of them

> are running low, your thyroid hormone will not be getting properly absorbed.

> List all the medications and supplements you are taking. Tell him that

> because of your symptoms, you wish to be referred to an endocrinologist for

> a second opinion. Ask that the letter be placed in your medical notes and

> send a copper to the Practice Manager.

>

> We find you can get much more done when you put it in writing.

>

> Luv - Sheila

>

> Hi Sheila

>

> Thank you for sharing your knowledge with me, I certainly feel like a

> novice. However, that is something I hope to change. My first step is

> go back to my GP and be more assertive about how I am feeling. I will

> also work my way through the information you have provided. I am

> determined to regain my health.

>

Hi sheila

I am going to take your advice and write a letter to my GP. I will keep you

updated on my progress.

Thank you

Annie

March 9, 2009

Thank you so much for letting me know, . (I will definitely have to google

that movie -- I found out from my own son that the reference comes from a movie.

My estranged spouse used to say, " Oh, Liz, you are so deficient in pop

culture! " ) I am sure many people at this group have a sense of solidarity with

your son and empathy for what he was subjected to at school. Just thinking about

it still gets my dander up bigtime! It sounds as if he is a spunky and resilient

guy, though. I am wishing him all good things as he goes into surgery.

I am still catching up with the responses on this thread (and several other

threads too). I just read Donna's post as well as yours -- many thanks, Donna! I

was sort of afraid that my remarks would cause a major riot and mass exodus from

the group. Thankfully, though, there seem to be more authentic Christians (and

humanists) around -- and fewer hypermoralistic literalists -- than I might have

feared!

I've been meaning to mention that my own son always talks fondly about the

Christians with whom he personally went to high school -- a rather large group

of young women whose families were originally from Korea. Without wanting to

engage in ignorant ethnic stereotypes, I have noticed the same thing, in

general, when it comes to Korean Christians, including one nurse I got to know

rather well while hospitalized. I have found a similar joyful, loving quality in

people of almost every faith who are coming from a place of love rather than

judgment.

P.S. or " BTW " -- One show I always like to catch when I can is Krista Tippett's

program on NPR, " Speaking of Faith. " So many of her guests exemplify a positive,

we-are-all-in-this-together-and-need-to-take-care-of-one-another attitude. I

understand you can also listen to these programs in podcast form at

speakingoffaith.org Tippett has interviewed some of my own favorite public

figures including Naomi Remen, MD (an internist and counselor for people

with cancer who has herself lived with Crohn's disease since her teens) and a

very lively and sensitive Quaker consultant and author I had not previously

heard of called Prentice Price. One current focus of her series is the question

of how we can learn and grow from the economic disaster. To me this has

implications for turning any kind of adversity (including severe scoliosis and

flatback syndrome) into a force for growth and for good.

I am also crazy about Tavis Smiley. He was raised Pentecostal, and he brings

such a deep respect for others -- a profound and genuine kindness --to his

journalisic work. When he signs off with his trademark, " Keep the faith, " I

sense that this is far more than " just words " but comes from a deep and

authentic place within himself.

Best,

> > > > >

> > > > > Recently I was told that my days are numbered and that I will

> > become

> > > > > ambulatory. I asked what that meant and was told my scooter will

> > be

> > > > > my best friend.

> > > > >

> > > > > Well, I shed my closet tears and put on my stiff upper lip and

> > went

> > > > > on with my day. My housekeep which my husband surprised me with

> > came

> > > > > and decided that whatever the doctor said was utter nonsence and

> > > > > anyone can be healed with " healing hands " . She proceeded to lay

> > > > > hands on me along with her " helpers " . I tried to tell her that

> > just

> > > > > maybe " this was my cross to bare " . I often times think of it that

> > > > > way. But noooo... She said we were not intended to walk this

> > earth

> > > > > sick. How does this fit in your current discussion??? Well as I

> > was

> > > > > reading the post about the remedies often times pushed on us here

> > I

> > > > > felt that this one is often times overlooked or maybe no one wants

> > to

> > > > > talk about it. It's out there. My Sunday school class had a

> > > > > discussion about how people that are sick are that way because of

> > a

> > > > > sin they haven't confessed. I've listened through sermons about

> > this

> > > > > too. I know this isn't a religious forum but I know this has to

> > > > > cross someones path occassionally. How do you get them to back

> > > > > off??? I've even tried to explain it by say I'm like the appostle

> > > > > who was given the thorn in his side. I feel like I am

> > helping

> > > > > others in Chronic Pain through this because I do run a support

> > group

> > > > > through my church. I do try to do good work through this

> > > > > experience.

> > > > >

> > > > > So, my question is....how do you respond to these helpful remedies

> > of

> > > > > confessions???....and lets not forget the " healing hands " . I'm

> > not

> > > > > healed yet I'm told because I don't believe God can heal me. I

> > tried

> > > > > to say there's a bunch of hardware that man put in there and they

> > > > > responded with but God can take all that away... I'm a practicing

> > > > > Christian and it's not that I don't think he can't take it away

> > it's

> > > > > that I think it was in His plan to put it in there to start with.

> > > > > When I've said that in the past I get these shocked looks like I'm

> > > > > some sort of " hethen " ! Does anyone have a " remedie " to dealing

> > with

> > > > > these helpful people???

> > > > >

> > > > > Margo

> > > > >

> > > >

> > >

> >

>

August 21, 2009

Hi, Kate --

Wow, I'd better get up on the news! Is that the same Dr. Polly who is or was at

Walter Army Medical Center? We heard good things about him several years

ago.

I have not found any formal listing of complications and am not sure where Dr.

Rand got his statistic -- " a 30% rate of complications, including both major and

minor ones. " Some -- perhaps most -- are readily fixable in the right hands,

although it may take some time. I asked Rand if he had seen many

complications personally during his years of performing frequent revision

surgery. He said, " Let me put it this way. I've seen all of them, and I feel

confident that I can handle any one of them that might arise. " The complications

he listed for me did not include a few that have popped up among this group,

however. I'm afraid we have had a few doozies. One that seems somewhat common is

related to long anesthesia, particularly when you have had a two-part revision

totaling, say, 20 hours of general anesthesia in a one-week period. A number of

people I have talked to became delirious after the second surgery. I had TWO

two-part revisions, with a delirium following each of the two " second

installments " ! The first time, I was apparently rather humorous in that I

insisted to a visitor that I wanted to turn over and show off the new pair of

wings that Dr. Rand had attached to my back. The best thing to do, IMO, in a

case like this is to zap the patient immediately with a single shot of some

powerful antipsychotic like Haldol. Unfortunately some hospitals are reluctant

to take such definitive action and will dilly-dally around with Valium and this

and that while letting you stay loopy for several days!

The bleeding problems are the ones that really scare me, but generally they are

handled fine (I think). Minor nerve problems sometimes occur and are usually

corrected on the spot. Paralysis is everyone's nightmare. One doctor listing

complications for me got to that one and said, " Paralysis -- well, that never

happens any more. " Alas,in rare cases it still does. One of our members has lost

the use of her legs because of a problem during her revision surgery with one of

the most esteemed revision surgeons in the country.

I am not trying to scare you. I guess I am just kind of free-associating and

should stop and go try to find some hard data. All of this is really just

anecdote -- even Rand's " 30% " . Like you, I would love to see harder data, with

science to back it up.

Best,

> > > >

> > > > ,

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> > >

> >

>

August 21, 2009

Yes it is the same Dr Polly from Walter .

-- In , " feistyfounder2000 "

<elizabethrgonzalez@...> wrote:

>

> Hi, Kate --

>

> Wow, I'd better get up on the news! Is that the same Dr. Polly who is or was

at Walter Army Medical Center? We heard good things about him several years

ago.

>

> I have not found any formal listing of complications and am not sure where Dr.