Welcome Newbies

[dshobbies]

Hi to all,

I just spoke to Mark who wanted to start a welcome thread but I decided to jump the gun and welcome all who wish to join us, both pre and post op, whether on or off the fence and/or anywhere inbetween.

A little history on Mark, mmglobal, the administrator of this forum. Through his business, Global Patient Network (globalpatientnetwork.com) he has helped so many of us traverse this very windy road of spinal issues. He knows more about spines than any other layman and is well known and respected by doctors worldwide. Personally, I think he's a miracle worker in getting appointments scheduled because I was on the slow road until I met him... and then things happened -fast! His gentleness and compassion combined with his knowledge is very calming, especially when this chaotic world gets the best of you.

So, for all of you who are thinking about joining us, why don't you introduce yourself and give us a little backround. I hope this forum provides you with whatever you need. By the way, check out Today's Funny in Community Support for a good laugh.

We look forward to 'meeting' you, Dale

[Kathy]

Thanks, glad to be here. Can't wait to get to know all of you that I don't know and see all the one's that I do know. I'll forewarn all of you that I can be, am usually, long winded and tend to ramble I try to control it; but always feel like I need to give the background information to tell the story. Within a month, you will probably know my life story! HeHe I also like all the neat emotion icons, and get a little crazy with them.
A little about me, I am a married stay at home mom of 2 little girls; Emma 5 years and Ava 3 years. I live about 30 minutes north of Dallas, in Denton, TX. I am a patient of Dr. Zigler at Texas Back Institute. I am a canidate for ADR at L4/5 and am just trying to get through all the insurance red tape.
Glad to be here and thanks to all of you for being so welcoming to all of us,
Kathy

[mmglobal]

Kathy, is your house in this picture? We jumped from the North Texas Parachute center, as I remember about 30 minutes north
of Dallas. This is my pre-spiney life, circa 1992??? My accident in 1997 was the end of my jumping. I'm in black and royal with a
silver stripe on my rig at about 8:30 in the formation.

16 way plus camera out of 4 Cessnas. The next jump of the day was a 20-way out of a C-47.... military DC-3... great noise,
great history, great fun jumping an aircraft built in the 30's and hauled troops in WWII

[trkdoc714]

Hello,

My name isn't really trkdoc714, it's Bob. I'm married with the oldest being 36 and youngest 2 years old. There's several in between and once I inventory them, I'll report back with an accurate count.

My wife has made the choice of having an ADR at C5/6 as opposed to a fusion. Her initial diagnosis was to fuse C4 thru 7 or her head would fall off in a few weeks. We found her a great surgeon who offered her either the single level ADR or fusion. She'll be joining I-Spine tomorrow I think.

I've been having back issues for almost three years. I've seen 5 (oh yeah, I have 5 children) or 6 Ortho or Neurosurgeons. The diagnosis have been: fuse X 2, fuse X 4, there's nothing wrong with you drugs won't help (where was this guy during the college years?), fuse X 1 and Laminectomy X 3. Next month I have an appointment with a surgeon from Stenum. I'll take my films and Xrays to get his opinion.

Well, that's me. I'm glad to be here and relieved to find a more relaxed atmosphere. I'm ready to learn, support and be supported.

Bob

Oh yeah. I can be a little more longwinded than Kathy.

[mmglobal]

Dale... you beat me to the punch... here is my welcome post....


I’d just like to extend a very warm welcome to the flood of new members coming to iSpine. If you are not part of the flood… OK a warm welcome for you as well.

My name is Mark Mintzer and I’m the founder of iSpine; a non-profit organization dedicated to providing quality information and a supportive environment on the International Spine Patient Information Network. I started my ‘career’ as an internet spine patient in 2000. I was 3 years into spinepatienthood (following a bad auto accident in 1997) and was about to have a 2-level 360 lumbar fusion. That would have been my second spine surgery, but fortunately, I discovered the MGH Braintalk Spinal Disorders Forum and became a fixture there, making literally thousands of posts over the years to come. I still post there, but after a string of technical problems, they don’t have the traffic that they used to. (Yes, you can post links to other forums here. Our purpose is to share information, not limit it.)

In early 2003, I recognized the need for a more targeted forum for people who were researching the new technologies. I began the first iteration of this community that was the Yahoo eGroup for ADR_Patients. This was very successful, but the email eGroup did not lend itself well to the types of discussions we were having. This community that was built with the generous sharing of information by a few dozen patients eventually moved over to the ADR/Spinal Tech Talk forum at BPSG. After a year and a half, we moved the community over to ADR Support. I think that Justin (Dr. J) was the first to be banned from BPSG. Harrison, Alastair and I, along with Justin, were the band of 4 forum leaders and soon we were all banned. Shortly after that, anyone who said anything nice about me or mentioned the new forum was banned, and we were joined at ADR Support by dozens of the old crew. (Sound familiar?)

The “banned of 4” moved the community over to ADR Support in December of 2004 and again, we all worked very hard to build the community into the best place on the internet for the new technology information seekers. By this time, I had taken 2 trips to Europe AFTER my surgery and had observed surgery at Stenum, AlphaKlnik, St. Elisabeth, St. Wolfgangs, and Rudolphinerhaus, in addition to several centers in the US. I had already begun traveling with patients for their spine surgery. (Next week, I’ll take my 27th trip to Europe and have now done this with > 50 patients.) I’ve now observed > 200 spine surgeries of all different kinds, have attended dozens of conferences and classes, and have a unique body of experience that makes my input valuable to my clients, and to the online patient community as well. Unfortunately, this experience was deemed to be at odds with the goals of ADR Support and in March of 2006, I was banned. The process was pretty outrageous and many things that were just flat-out untrue were said. An email was sent to all ADR Support members stating, “We believe that clearly separating commercial contacts is the best way to provide transparency within the Forum, as well as clarity and freedom of choice to each individual member.”

I continued to amass volumes of useful information as I attended more conferences, classes and was taking 6 trips each year to Germany for dozens of surgeries. I decided to start a new forum where people could post without fear of being banned. It was apropos to start on September 19th, please read my initial welcome thread. It makes me very proud to spend time in the OR with pioneers of the industry like Bertagnoli, Zeegers, Buettner-Janz, Delamarter, Regan, Yue, Bitan, Yeung, Hoogland, Schiffer and others.

Here on iSpine, you do have a choice. If you feel that there is a conflict between my status as a professional advocate for spine patients, then please feel free to ignore my posts. However, if you feel that the information I post is useful and informative; or even if you think my posts are a load of crap… you can also choose to read them, challenge them. You can even tell me that it’s BS. You can agree, defend, disagree with anyone... just be civil. The one cardinal rule that I insist on is that we all post for the benefit of the patient community. If you have a good experience, share it. If you have a bad experience, share it.

>> There is no entity that is the arbiter of correct and incorrect information. You may disagree to your heart’s content. It is up to the reader to determine the value of the information presented by all members.

>> I will NEVER read your private messages, unless they are sent specifically to me. Surreptitiously reading other people’s communication is just wrong.

>> I will NEVER edit a post, then edit the database to cover tracks. That is just wrong. Transparency is not just a word to bat about... it's a way of approaching one's resoponsibility to those we serve.

This is a tough community. Many of us are in chronic pain, on huge doses of medications, severely depressed and literally have our lives crumbling around us. (These are the folks that are doing well… the severe patients are much worse! … OK, bad joke.) It is not possible to have ANY type of community without occasional dust-up and hurt feelings. Our chronic pain community makes it even more difficult.

So, we’ll have our problems. I’m glad that you found us. I’m sorry about the events in our lives that brought us all here. I hope that you gain a lot of useful information, a sense of community and a ton of support from what we all do here.

Welcome!

All the best,

Mark

PS… please introduce yourself on one of the ‘new here’ threads.

[Kathy]

Originally Posted by mmglobal

Kathy, is your house in this picture? We jumped from the North Texas Parachute center, as I remember about 30 minutes north
of Dallas. This is my pre-spiney life, circa 1992??? My accident in 1997 was the end of my jumping. I'm in black and royal with a
silver stripe on my rig at about 8:30 in the formation.

16 way plus camera out of 4 Cessnas. The next jump of the day was a 20-way out of a C-47.... military DC-3... great noise,
great history, great fun jumping an aircraft built in the 30's and hauled troops in WWII

You might have been in Denton or Gainesville (on the Oklahoma/ Texas border). I used to live in Gainesville and they have a small airport, that was popular with a lot of skydivers. It looks like a lot of fun, not sure I'm brave enough though. Maybe once I'm better, I'll have to do it, just cause I can.

[Kathy]

Originally Posted by trkdoc714

Oh yeah. I can be a little more longwinded than Kathy.

And you have a slinky spine and I don't. I'm so jealous!

[Kathy]

Originally Posted by mmglobal

After a year and a half, we moved the community over to ADR Support. I think that Justin (Dr. J) was the first to be banned from BPSG. Harrison, Alastair and I, along with Justin, were the band of 4 forum leaders and soon we were all banned. Shortly after that, anyone who said anything nice about me or mentioned the new forum was banned, and we were joined at ADR Support by dozens of the old crew. (Sound familiar?)

What does BPSG stand for? Did you, Justin, Harrison and Alastair all have your own forums? Or did you all start ADR support together? So Harrison was one who was censored and left? And now is doing the same thing to others?

Originally Posted by mmglobal

The “banned of 4” moved the community over to ADR Support in December of 2004 and again, we all worked very hard to build the community into the best place on the internet for the new technology information seekers.... I’ve now observed > 200 spine surgeries of all different kinds, have attended dozens of conferences and classes, and have a unique body of experience that makes my input valuable to my clients, and to the online patient community as well. Unfortunately, this experience was deemed to be at odds with the goals of ADR Support and in March of 2006, I was banned. The process was pretty outrageous and many things that were just flat-out untrue were said. An email was sent to all ADR Support members stating, “We believe that clearly separating commercial contacts is the best way to provide transparency within the Forum, as well as clarity and freedom of choice to each individual member.”

So, you all started ADR together? Was it 4 forums made into one? Or new? So, you weren't kicked off for trying to get 'new clients'; but because you were becoming more experienced, learning more and maybe making a particular someone jealous or feel inferior to you? This is just crazy to me.

Originally Posted by mmglobal

Here on iSpine, you do have a choice.

There is no entity that is the arbiter of correct and incorrect information. You may disagree to your heart’s content. It is up to the reader to determine the value of the information presented by all members.

You must be kidding, you aren't the 'God' of Ispine?

Originally Posted by mmglobal

I will NEVER read your private messages, unless they are sent specifically to me. Surreptitiously reading other people’s communication is just wrong.

I suspected that this might be a problem at ADR and chose my titles carefully. After the pm's I sent telling we were leaving, I am probably banned by now.

Originally Posted by mmglobal

I will NEVER edit a post, then edit the database to cover tracks. That is just wrong. Transparency is not just a word to bat about... it's a way of approaching one's resoponsibility to those we serve.

Thank you, because it is extremely irritating to be re-reading a post of yours that has been so edited, that it's not even what you wrote anymore. Or having a post locked, just so the administrator can have the last word.

Originally Posted by mmglobal

This is a tough community. Many of us are in chronic pain, on huge doses of medications, severely depressed and literally have our lives crumbling around us. (These are the folks that are doing well… the severe patients are much worse! … OK, bad joke.) .

Unfortuantely, not a joke. Maybe someday, with this site and many faithful doctors, leaders, patients and others it won't have to be this way for others that walk this road behind us.


Thank you Mark, I don't know you; but already like your personality and humor. Can't wait to get to know you better.

[mmglobal]

Originally Posted by Kathy Earhart

What does BPSG stand for? Did you, Justin, Harrison and Alastair all have your own forums? Or did you all start ADR support together? So Harrison was one who was censored and left? And now is doing the same thing to others?

So, you all started ADR together? Was it 4 forums made into one? Or new? So, you weren't kicked off for trying to get 'new clients'; but because you were becoming more experienced, learning more and maybe making a particular someone jealous or feel inferior to you? This is just crazy to me.

BPSG was Back Pain Support Group. It was a nice forum and probably still is. Same moderator issues as ADR Support. Harrison, Alastair, Justin and I were all prolific posters. When the board got over-moderated (and we got banned), we all moved to ADR Support. Harrison stepped up and said he'd run it. At the time, I felt that with my position in the community, I shouldn't own the forum. (Not my brightest decision.)

[Kathy]

Originally Posted by mmglobal

BPSG was Back Pain Support Group. It was a nice forum and probably still is. Same moderator issues as ADR Support. Harrison, Alastair, Justin and I were all prolific posters. When the board got over-moderated (and we got banned), we all moved to ADR Support. Harrison stepped up and said he'd run it. At the time, I felt that with my position in the community, I shouldn't own the forum. (Not my brightest decision.)

So you all 'founded' ADR support? Then, you got banned and now Justin? That is outrageous. Especially since Harrison has turned into exactly what he left from. From what I had read on the home page and speaking with Harrison, I thought ADR was his brainchild and that he built it single handed from the ground up. I have even read in previous posts, him post 'warning' members that some of the "other sites" that some of the members visited, are trying to get them as customers, or somehow have some financial intrest in having them there. I had thought that there was something against you. From what I had got from posts, you were on their 'soliciting members to be a customer of yours' and that you were banned to protect us. That the members on other sites "would see the truth". I can't believe all the horse crap he tells people.

In all honesty, the site shouldn't be called ADR; but Mycobacterial, The Secret Bacteria that are in your body causing all the problems you are having and the Conspiracy of the doctors to keep patients in the dark.

I am just dumbfounded at all of this.... I feel so dupped and naive.

[SandyW]

Mark,

Thank you for stating how you run things here. I am fairly new at posting on any site. I can see that feelings can be hurt, when you're in pain you lash out at those who support you! If we can all be understanding and believe that no one intentionally wants to hurt our feelings, we'll be great. We only have one God, the rest of us are just human.

I want to say that I had gotten a report about Mark traveling with patients and was told I could do it myself since my budget was very limited. I made it, but let me tell you, if Mark had been by my side, what a difference it would have made. My hubby and I thought we had things under control, but how wrong we were. He did offer suggestions, his services, his phone number when we met in the hotel lobby and didn't send me a bill. . He does a lot of unpaid - ??? shoot, can't think of the word - for patients. He pesters the well-known doctors to see patients with severe problems that have been turned down by others.

So thanks Mark, glad to meet you again. Sandy

[dshobbies]

Just want to let everyone know, Mark is very soft spoken. He forces nothing on you. He is only insistant about your knowledge base regarding your own health. He might prod a little but stops short of telling you what to do.

Whether you utilize his services or not, he doesn't push. To set the record straight, Mark bent over backwards not to solicite ADR Support members but Harrison wanted him out to fulfill his own agenda and manufactured a way to do it that appeared he was in the right. To be truthful, it was people like me and a myriad of others who sang Mark's praises. After Mark was kicked off the forum, I posted my surgical experience, mentioning Mark several times. I was chastised for it.

Not to long after Mark was banned, Harrison announced his own desire to become an ADR advocate or somthing like it. You do the math.

To complete this post, I'd just like to tell you that Mark was my best investment into my spine. I could have done it without him, eventually, but he made everything easier and today, I consider him my friend. I was able to call him during those 'crazy' moments, or fear or despair. He's been there, done that, and he understands. He just wants to help people. How fortunate for him that he was able to turn this into a career.

To all, please take care I look forward to getting to know everyone,
Dale

[chasswen]

hi everyone it's ME. heheheh
my name is chuck and have been around for quite a long time. my surgery was with dr bertagnoli aug 2006 and was successful after a very long rough recovery. i have helped many with travel and support with there surgeries. please feel free to write or contact me for any of the above reasons or for what ever. i know many of you and i am always checking in. i have watched most of everything talked about over the years and it a shame.
best wishes
chuck

[Terry Allen Blackburn]

It is being stated that I was not banned, but chose to leave. I did leave, after Justin was banned. The next thing I knew, I could no longer access the forum and was unable to see any PM's or postings at all. I wrote an e-mail explaining my feelings about someone allowing their ego to get in the way of good business sense. I have a belief that we are all in this together and there is no one of us that is more important than each other. Also, we are all replaceable so, it is best to get along and make the best of differences as we can all learn from adversity.

I was invited to come back on as I have done my best to support all who I came in contact with. I made it a stipulation that Justin needed to be allowed back on the forum in order for me to come back. This was not going to happen and Justin did not want to come back.

My life could have went on without being a part of any forum. I just believe that we are our brother's keepers and, if I can lend a little support to my fellow human being along the way, then that is my responsibility.

So here I am and, I consider myself; "One of the banned."

Terry Newton

[phylly]

Hello Old Friends,
I am glad to see you all on this site. I guess I was fairly new to ADR and couldn't quite figure out why people were being banned. It seems sort of childish to me that peoples differences could not be worked out. Isn't that why there are these sites? So everyone can discuss different points of view? Anyway, good to see you all again. My name is still the same.
Phylly

[treefrog]

Well, I am glad to be here, and it's nice to learn a little bit more about the history of some of the players involved. I had been at ADR even shorter than anyone else, I'm guessing, not more than a month. So a lot of what happened there is a bit of a mystery to me. I don't think I am banned from there, but now in particular, I'm not sure that I still want to participate there. I guess that remains to be seen.

I am also a member at the Spine Health forums. They have what seems to be a huge member base. But one thing I don't like is that you can't mention names of doctors. I think it is very important for this kind of information to be shared. There are bad doctors, mediocre doctors, good doctors and excellent doctors.

I haven't explored this site much so far, except for the articles section (with which I was very impressed), but I look forward to reading more, and getting to know all of you better.

Thanks for the welcome.