Re: Re: Revision aftermaths

[Guest guest]

Dear , Donna, and Suzanne,

I've been mulling over these past conversations, thinking how to add to the line of comments made.

First, , I'm so sorry things went so awfully for you, Your story is a cautionary one, that all here can learn from, and I can't imagine the level of dissappointment you feel. What to do for the patient who doesn't come out of all this vastly improved, it seems some doc's don't have a clue, and extended care is non existant, as you are to be someone who should be forgotten, you don't fit in the pages of their shiny books on the tables of success.

I know even in the best of circumstances, with the best doc's, there will be those who's struggle adds up to a whole lot more surgery, and at the end, there will be improvement, just not as much as they dreamed or hoped for. Also there will be some, not many, who comes through this fight unchanged, or with differing pain.

I sit as one who has had a great deal of revision work done, I wasn't a one, or even two shot gal, and I know some would look at that as a failure, but for me, it took three to get me vastly improved. I have always found my participation here among the population of re-revised patients, where I can be of the most help. Nothing can pull the rug out from under you, than finding out, danged, things didn't come out as well as we hoped, and it's on to plan B, or in my case plan C. I have talked to patients by phone or e-mail, from almost all major doc's spoken about here, when the rug was out from under them, to help them see there maybe light at the end of the tunnel. I know, that for some, considering all the varying factors, and while improved, either in pain levels, or posture, they won't hit the holy grail of painfree, and the ability to be as functional as they hoped. My insides hurt for them. It was very profound for me this past year to be ie's mentor in his run up to a surgery that never came off with Dr. Boachie, given that ie had such a complicated case of scoliosis, and had such a vast list of complications from what had been done to him in the past surgically, and with just how distorted his body had become from this disease, but given all he had thrown at him, he had hope. Was it false hope, maybe, but I don't think people can survive without it. I think his battle put it all into persective for me, you fight, and you fight, you win some, you lose some, but you fight. ie fought for the basics, the very basics of life, and lost, but I'll be forever changed from our e-mail conversations, and from my phone conversations with Wanda his care giver. Scoliosis can be and is cruel, and for some, downright disabling, and this can never be lost in looking at the big picture.

So when talking to doc's, with shiny books, or websites, or even reams of patients here with glorious stories, ask them, the doc's, what keeps you awake at night surgically, what happened in those cases. What did you do for them, what made them more comfortable and functional. I think all doc's have those patients, while surgeons, they cut for a living, it's what they do for extended care for those who still struggle with pain in the aftermath, that can help you get a full picture of a surgeons practice. Do they have a good pain mgt doc they work with, do they have excellent PT people they work with, good to ask in advance.

Know that NO guarantees should ever be given, as each of us are different, what has been done to our spines are different, we may all have Flatback, and have some commonalities, but my curve and spine, and body isn't yours, and therefore, results will vary. I think you can load up the odds on your side by doing your homework, knowing as much about your surgeon as possible, but in the end, it comes down to what happens in that operating room that day, with that body and spine, more often than not, improvement begins there, but rarely it doesn't. Success is in the eye of the beholder, to me, going into all this, 50 percent reduction in pain, would have been a success for me. But when they give you the forms to fill out, and my doc went over with me personally, it states, you can come out of surgery improved, the same, or worse. I think most all we have had contact with feel they have gotten a level of improvement, some more than others, and some like me, and Cam, and Suzanne, have found a real life changing result that has gotten us back to a level of real function and relief from our pain. Three examples, three different surgeons. The same could be said for those who's surgery didn't bring them as much relief as they hoped. For some this surgery is a real miracle, life changing, and for others it's a bandaid, or patch, that keeps them going, perfect no, but helps in the scope of things.

Donna, know here we are blessed with the participation of Bonnie, who is 11 years out from her revision, who had her surgery, and comments here to let us know how she is managing in the years after. I think Suzanne your comment about people speaking glowingly of their doc's despite pain, is all in how you look at it. Is getting rid of the pain completely the only sign of success, I think not. Bonnie is a prime example of this, her surgery went well, she did well for a period of years, and then she got deterioration of her SI joints, and had pain again and had to deal with Pain mgt, but did this draw away from the surgery she had or her doc, I think not. I'm here, six and a half years away from my last revision, knowing that all this hardware has some limits, have had a couple of bouts with pain( 10 days from hardware irratation, and about three months when I tweeked my pelvic bolts after a fall), and I know other than that, I'm pretty danged blessed to live a painfree exisitance. Why I stay here, this far out, is to be of help and support, but also to live among a group of people who is a real life follow up survey, we get to see daily just how well our members hold up, not for just six months, or a year or two, but six, and even over a decade.

's tale of what happened with her case,or my story, should be shared, as each of them shows that this travel through Flatback sometimes has turns we didn't expect. Even in the best of cases, this is a grueling surgery, and recovery, and for some like , vastly more complicated. All voices and experiences should be heard, how else could those coming to all this have a real picture of what it may look like.

I asked my doc going into surgery, what would I be like in ten years following revision and he said they just didn't know, they hadn't been doing it long enough to know. I think now there is the beginnings of seeing a picture, a bit foggy, but beginning. You here, and your participation will help all of us see. I remember when Cam who's surgery came after mine, was asking questions, now she's the one with this site, answering questions, and is over 4 years down the road. All of you who participate, journal your recoveries, share your scoli story in the files section( if you haven't please do), and contribute here, helps those who come to this battle after us. Some will have the shiny stories, unfortunately some won't, but all stories are of value, and help those who come after us, and us ourselves.

With peace,

Colorado Springs

[ ] Re: Hey Clinic

I have also noticed that many people who did not have great outcomes from surgery still speak very highly of their doctors, even though they continue to be in pain. I know that when I was first considering revision surgery, it was the surgical outcomes that I paid more attention to.>> Ccc,> > I wonder if you can fill us in more on where you are on your journey? Your last posts indicated you were looking into surgeons up in Michigan, and then a female doctor. Have you moved?> > I ask for several reasons....but mainly because I hate for this group to simply be or become a referral service for surgeons. I am very leary of the implications of anyone ever following anyones advice that comes from the internet...and we have had a recent spate of folks just asking this very pointed question about candidate surgeons, as you have. As I know you have been a long time member you realize that this is really a support group, which means that we share with each other all that we we have learned and also something of ourselves. It is a two way street.> > You should realize when asking a broad question as you have that generally speaking, if people have a positive experience they are likely to feel comfortable writing about it. Also, it is entirely possible to get a response wherein a patient feels like a doctor "walked on water" in the months following surgery when a patient can be in the post surgical "euphoria" stage. It is also possible that a patient may find they are are uncomfortable posting negative information, even when factual, for fear of repercussions. Lastly, I understand there are doctors out there who are making patients sign an agreement that they will not speak ill about their surgeon on-line, although I am not saying I believe this to be true of DrHey. These are just illustrative ways that what might seem like valid information may not be accurate or balanced.> > So, all that is to say that as suggested you really must do your own research, no matter what kind of responses you get to your question. When I was in my own quest for surgery after I narrowed down my candidate surgeons I went back and followed their patients as best I could from the group. Then I sent out private emails to the patients asking them if they would chat with me about their experiences. When agreed upon I would phone and talk to them. In addition I asked the surgeons themselves for some reference patients.> > Dr Hey maintains the most interactive website of the surgeons I am aware of, and that is something to note. I assume that Donna's comments, for instance, are indicative of her exposure to that portal of DrHey's. As I understand it, she has never consulted him in person or had him as her doctor. So please remember to verify, verify, verify". And I mean everything. Make sure you understand who and where your data is coming from.> > Take Care, Cam>

[Guest guest]

, you speak the truth from every angle. Very astute. If you can go for 3 revisions I can at least consult with one more surgeon. If ie never gave up then nor should I. If I can't learn from life's' experiences and those of others then I am the one who loses. Thanks for your very positive thought provoking post.

Sincerely, G

[ ] Re: Hey Clinic

I have also noticed that many people who did not have great outcomes from surgery still speak very highly of their doctors, even though they continue to be in pain. I know that when I was first considering revision surgery, it was the surgical outcomes that I paid more attention to.>> Ccc,> > I wonder if you can fill us in more on where you are on your journey? Your last posts indicated you were looking into surgeons up in Michigan, and then a female doctor. Have you moved?> > I ask for several reasons....but mainly because I hate for this group to simply be or become a referral service for surgeons. I am very leary of the implications of anyone ever following anyones advice that comes from the internet...and we have had a recent spate of folks just asking this very pointed question about candidate surgeons, as you have. As I know you have been a long time member you realize that this is really a support group, which means that we share with each other all that we we have learned and also something of ourselves. It is a two way street.> > You should realize when asking a broad question as you have that generally speaking, if people have a positive experience they are likely to feel comfortable writing about it. Also, it is entirely possible to get a response wherein a patient feels like a doctor "walked on water" in the months following surgery when a patient can be in the post surgical "euphoria" stage. It is also possible that a patient may find they are are uncomfortable posting negative information, even when factual, for fear of repercussions. Lastly, I understand there are doctors out there who are making patients sign an agreement that they will not speak ill about their surgeon on-line, although I am not saying I believe this to be true of DrHey. These are just illustrative ways that what might seem like valid information may not be accurate or balanced.> > So, all that is to say that as suggested you really must do your own research, no matter what kind of responses you get to your question. When I was in my own quest for surgery after I narrowed down my candidate surgeons I went back and followed their patients as best I could from the group. Then I sent out private emails to the patients asking them if they would chat with me about their experiences. When agreed upon I would phone and talk to them. In addition I asked the surgeons themselves for some reference patients.> > Dr Hey maintains the most interactive website of the surgeons I am aware of, and that is something to note. I assume that Donna's comments, for instance, are indicative of her exposure to that portal of DrHey's. As I understand it, she has never consulted him in person or had him as her doctor. So please remember to verify, verify, verify". And I mean everything. Make sure you understand who and where your data is coming from.> > Take Care, Cam>