What's New in Spine Surgery

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http://www.ejbjs.org/cgi/content/full/88/8/1897

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Hi , I am not sure who the "owner" of this forum is but I am wondering if I am in the wrong place. No one really responds to my posts here. Suggestions? Move to another forum? I haven't actually had the revision surgery but I think it is coming....... maybe that excludes me?? Racine <lindaracine@...> wrote: http://www.ejbjs.org/cgi/content/full/88/8/1897

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Cristl,

Hi...I am one of the founders....not really sure what kind of format

you are looking for. I looked back to see why you might be in the

wrong place....and why you say no one responds to your posts? I

think a lot of us have been away travelling/vacationing and sort of

in the " summer mode " ...but as near as I can tell most of the members

that routinely post have been corresponding with you.

Coming into a forum setting like this, for me, was kind of like

coming to a cocktail party where I didn't really know anyone. You

kind of have to jump in, strike up a conversation and have patience

while people get to know you. I am sorry if you are feeling

ignored...but I think it is a somewhat common complaint in forums

where people aren't really used to the medium.

You are in the right place for your circumstances. Many members are

situated exactly as you are, health wise. Most of the folks who post

often, right now, are actually in the " post-revision " mode...but I

can assure you that many (to most) members have not had surgery.

If you have any specific questions we have missed, please ask them

again. I also suggest that when new members are ready, that they

take the time to write a post telling their whole scoli story. Post

it and then we will put it in the Member stories section of the

files. This makes it easier for us all to remember the details of

anothers " story " . We are all alike in many ways...and yet each of us

has had a unique road to travel with our scoliosis....and we can all

learn from wach other in this regard. It also really helps to get

to " know " you.

I will be leaving this weekend (for yet another vacation!) ...but I

am sure others can help you find whatever support you need in the

coming weeks.

Take Care, Cam

[Guest guest]

I think there were also some problems with toward the end of July, certainly I missed a couple of messages that I only saw because someone had left the message they were replying to below their own message. So it's possible that you've missed some of the replies you've had Cristl, and also possible that people have not replied because they have missed your message.

I think also, with the thing about the leg problems, where I noticed you did not get a reply in the end about what to do about it, just no one who is suffering it really knows anything, and that sort of conversation tends to peter out without warning, like that one did.

I know on some lists I have basically felt utterly ignored once it was known that I'm from the UK, not the US, but that isn't how this list has been, which has been a very welcome relief. About the only other thing I can say (and I know it's something I'm guilty of doing) is that it makes it easier for people to reply if you have clear questions, and not too many different ones in different areas in just the one post, if you see what I mean. I'm terrible for that though, as I tend to ramble!

titch-- The wages of sin are death, but by the time taxes are taken out, it's just sort of a tired feeling - a Poundstone

[Guest guest]

Dear Cristl,

We as a group have kinda an ebb and flow to the group, sometimes there are many conversations going on in the group, and I'm sure this is what happened with you. I saw you got some responces but at that moment you came in we had a rush of new members and I'm sorry if you felt slighted, so I went back and read your posts and the responces. As Cam said many here are post revision, and we stay a part of the group to help out those who are beginning of this Flatback journey. So we have people at all stages, some who are wondering what all the symptoms they are experiencing are, some who are newly diagnosised, some who are traveling to get opinions, some who are doing pre-op tests and appointments, some who are just home from revision surgery, some who are working through the recovery process, and some like me who have a few years between us and revision.

I look forward to hearing what goes on at your next appointment, this month right? It's tough waiting to get answers. I knew for years something was wrong and went from doc to doc, either getting your fusions look fine, or look at that x-ray of course you'll have some pain, or you should just learn to live with the pain, here's some pills. So thats why we always recommend new group members get to very experienced doc's that handle post-Harrington rod spines often. So when you see your doc, ask pointedly how many post-harrington patients he's treated, and how many revisions he's done if he suggests surgery. My best suggestion is do your homework, but also trust your gut, you'll know if he doesn't feel confident. Close to you, and I mean close by in the state is Dr. LaGrone, we have had members have surgery with him and found him to be terrific, I know that means traveling, but it's always a good idea to see at least two surgeons, three would be even better. He is regarded as one of the top five in the country doing this surgery, and at best there are only two handfuls of docs that do this surgery often. Our spines are so complex because of what has been done to them in the past, that an expert doc at revision is necessary.

I look forward to hearing what your doc says at your appointment, and please re-ask anything you need answers to. We aren't doc's, but someone here will have gone through most anything you'll bring up, and if not, we'll be a support. Please know if we weren't answering quickly, it wasn't meant to slight you, it's just a time when a ton of vacations and family stuff is going on. Anything I can do to help just ask away. A good place to start with the group is reading members stories in the files section, you'll find so many stories like your own there, so have a box of kleenex ready, you can feel alone with this, you'll imediately feel a kinship with the members that have listed their stories there. Then list your story. I go back often to check so I get to know the members that are new better, or to refresh myself when someone lists. My story is From Colorado.

I know it's hard a the beginning of all this to take all the information and KNOW you are doing the right thing. For the most part this isn't an emergercy so you have time to weigh all thats said by doc's and ask questions. I'm three and a half years out from revision and doing very well, better than I hoped for. There isn't any guarntees to this surgery, I was just looking for a reduction in pain, and so far I'm painfree, a huge gift that's never lost on me. When you can't walk more than a few feet before the pain gets too bad and you have to sit to resolve it, walking painfree is such a blessing. But even if I had come out with 50% less pain that would have been great, at least then it would have been manageable, and that was all I was looking for.

Welcome, and I'll be sure to chime in better to your posts, I have had the Granddaughter a lot this summer, and just have been enjoying her, she's sixteen months and into everything, so I don't get to post as much as I'd like.

Colorado Springs

Re: [ ] What's New in Spine Surgery

Hi , I am not sure who the "owner" of this forum is but I am wondering if I am in the wrong place. No one really responds to my posts here. Suggestions? Move to another forum? I haven't actually had the revision surgery but I think it is coming....... maybe that excludes me?? Racine <lindaracineearthlink (DOT) net> wrote:

http://www.ejbjs.org/cgi/content/full/88/8/1897

See the all-new, redesigned .com. Check it out.

[Guest guest]

Hi Cristl,

Sometimes I see someone has already said what I would have, so I don't respond. Doesn't mean I'm ignoring you, just that I've not much to add.

Bonnie

Re: [ ] What's New in Spine Surgery

Hi , I am not sure who the "owner" of this forum is but I am wondering if I am in the wrong place. No one really responds to my posts here. Suggestions? Move to another forum? I haven't actually had the revision surgery but I think it is coming....... maybe that excludes me?? Racine <lindaracineearthlink (DOT) net> wrote:

http://www.ejbjs.org/cgi/content/full/88/8/1897

See the all-new, redesigned .com. Check it out.

[Guest guest]

Ditto to what Bonnie said. Plus as Cam said many of us have been away alot this summer. I have been gone every weekend & when I'm home I've been at work & then crash.

Still recovering but doing well. Walking upright & with no pain walking is such a blessing.

Joyce T, RN Atlanta

[Guest guest]

Walking upright & with no pain walking is such a blessing.

You took the words right out of my mouth Joyce - isn't walking a joy

now? It's hard to explain to those who have never had flatback, but

all I wanted from revision surgery was exactly what you said - to be

able to walk upright and with no pain. And praise the Lord....I got

it!

I've been thinking of you lately - I'm glad to know you are doing well.

~CA~

>

>

> Ditto to what Bonnie said. Plus as Cam said many of us have been

away alot this summer. I have been gone every weekend & when I'm home

I've been at work & then crash.

> Still recovering but doing well. Walking upright & with no pain

walking is such a blessing.

> Joyce T, RN Atlanta

>