Guest guest Posted August 10, 2007 Report Share Posted August 10, 2007 Hey Katrina I can't sleep either! HUGS Katrina <sweettoobeme@...> wrote: Hello! I hope everyone is doing the best that they can. Prayin for pain free days for all. Wanted to say hi and let everyone know that you are in my thoughts. Very tired and unable to sleep. Gentle Hugs, Katrina --------------------------------- Got a little couch potato? Check out fun summer activities for kids. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2007 Report Share Posted August 13, 2007 " EVELYN AIREY Larry I know how you feel I'm the same way the Doc even gave me sleeping pills but they don't help me at all.Can't lay down have trouble even setting down just can't find a happy medium at all. Take care and prayers to ya. Hug's Ev. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Hi , I have some sleeping pills, but just like you they don't work most of the time. I have a hard time making it through each day with the sciatic pain in both of my legs. Not to mention the pain in my back and in my neck. Like my late sister used to say,'Such is life'. I've been up all night,again and am going to try and stay up all day so I can go to bed early tonight. We got a new bed a couple of days ago. It sure is nice to have a good mattress to sleep on again. I had forgotten how it feels to sleep on a good mattress. I can actually turnover in bed and not hurt like crazy,lol. Well,so much for all that nonsense,lol. Time for me to go.I have some things that I need to do this morning. May you have a better day today than yesterday and not as good a day as tomorrow. Take as best care as you can and BE SAFE!!!!! Larry from Cowtown that's Ft.Worth,Texas,'Where the West begins' REMEMBER ALL OF OUR MEN AND WOMEN IN THE ARMED SERVICE OF OUR NATION PRAY THAT THEY MAY BE SAFE AND SOUND IN BODY AND MIND Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2007 Report Share Posted August 13, 2007 " EVELYN AIREY Larry I know how you feel I'm the same way the Doc even gave me sleeping pills but they don't help me at all.Can't lay down have trouble even setting down just can't find a happy medium at all. Take care and prayers to ya. Hug's Ev. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Hi , I have some sleeping pills, but just like you they don't work most of the time. I have a hard time making it through each day with the sciatic pain in both of my legs. Not to mention the pain in my back and in my neck. Like my late sister used to say,'Such is life'. I've been up all night,again and am going to try and stay up all day so I can go to bed early tonight. We got a new bed a couple of days ago. It sure is nice to have a good mattress to sleep on again. I had forgotten how it feels to sleep on a good mattress. I can actually turnover in bed and not hurt like crazy,lol. Well,so much for all that nonsense,lol. Time for me to go.I have some things that I need to do this morning. May you have a better day today than yesterday and not as good a day as tomorrow. Take as best care as you can and BE SAFE!!!!! Larry from Cowtown that's Ft.Worth,Texas,'Where the West begins' REMEMBER ALL OF OUR MEN AND WOMEN IN THE ARMED SERVICE OF OUR NATION PRAY THAT THEY MAY BE SAFE AND SOUND IN BODY AND MIND Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2007 Report Share Posted October 6, 2007 as usual im way behind, but its great to hear from you katrina take care rob<html><div>No greater burden can be borne by an individual than to know no one cares or understands. </div></html> neck pain@...: sweettoobeme@...: Fri, 10 Aug 2007 08:38:26 +0000Subject: Hello!!!! Hello!I hope everyone is doing the best that they can. Prayin for pain free days for all. Wanted to say hi and let everyone know that you are in my thoughts.Very tired and unable to sleep.Gentle Hugs,Katrina _________________________________________________________________ Climb to the top of the charts! Play Star Shuffle: the word scramble challenge with star power. http://club.live.com/star_shuffle.aspx?icid=starshuffle_wlmailtextlink_oct Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2009 Report Share Posted January 14, 2009 Joanne, I just looked at your last post, sorry no one responded to it. I get that you are scared by the surgery, For me it was a quality of life issue with it, either I did it, with all it's warts, or be in pain all the time, and with very limited walking ability, look at using a wheelchair parttime. I had just gotten to the point to where I had to find someone who had answers, and finally did. I get that it's scary, but you just have to bite it off a little at a time. Sounds like you are in the south, there are options there too, to have a qualified doc that does this often look at your situation and see what is possible for you. For me finding my doc was probably the hardest part, as I saw several before I had a name for what was wrong, and a plan to fix it. I say see at least two of the names spoken about here, weigh what they have to say, and go from there. It's good you are having pain mgt help, thats a step. But also look at surgeons, and get the 411 for you. Not everyone is a candidate for surgery, medical histories and such, and some want to try alternatives, such as PT, pain mgt, exercise,injections, and see surgery as a last resort, I get that, but for me, I wanted it fixed yesterday, as I had been in Flatback's spell for some 15 years, and just wanted a stab at getting better. All of us have spinning in our minds the awfullness of what happened in our pasts, our Harrington Rod surgeries for most of us in our prime teenage years, and it's understandable that we are seriously affected by what happened then. Please know, things are vastly improved since then, perfect no, but I wouldn't even compare it, and for me the biggest improvement was in pain control. I also felt far more in control, when you are a child, no one listens, as an adult, they listen better and respond to pain or positioning better. Give us your location, and will suggest some doc's to see for an opinion. We never tell people to see anyone for surgery, just an opinion, the choice is purely yours, but know experience does matter, you want the odds in your favor. Know during the holidays, and the run up to kids being back in school, responces can be a bit spotty. Also, sometimes if a post is more statement like, than pure questions, people sometimes don't know what to say. Also in a forum like ours, if someone doesn't feel they have anything to add, posts sometimes don't get responded too. No one intentionally meant to slight you. Personally I haven't been here as much as usual, I've had a lot on my plate, lost my Mom just before christmas, and had a great deal of concern when the company my hubby works for went belly up. So sometimes things get missed, and I'm sorry your felt slighted, there truely was no intent. Also, know the conversation here is a moving thing, sometimes moved along only by those who are active, sometimes it's those who are new to the diagnosis, sometimes by those who are recovering from the surgery, and yes sometimes by those who are living in a post revision body. I myself am 6 years away from surgery, but all of us who dedicate time here, hope to help those who are coming after us to this Flatback challenge. Also for many questions there are resources built into the site, it's also good to use the SEARCH BOX on the message part of the site, enter into the box anything you are interested in, and up will come past conversations on a given topic, we've hit a lot of them in the past four years. I hope you will post again, ask for what info you want, and know while we are imperfect people, we do and try to help people daily with this malady. Colorado Springs [ ] Hello!!!! What is it with you people. I have posted several mesasages, asking for advise, etc... have not gotten any replies. Do I not fit into your little group. What qualifications do you need to "fit". do you have to have had the revision surgery??? I needed some advice from someone who has been there and done that, but all posts I have done have been completely ignored. It is very rude on all of your parts. I will keep reading the post, I might pick up on some advice I need by chance. But I am done trying to post and being ignored.You all seem to be a nice group. Maybe you all were shut out in your younger lives because of the scolosis, so you see a chance to turn it around and do someone else that way. Well, you have all brought out all of the ignored and left out feelings I had in high school. So, you have done what you wanted, even if you don't admit it outright.Thanks for nothing. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2009 Report Share Posted January 14, 2009 Dear Joanne, I am wondering whether your posts are reaching the membership. I searched your name on the sight, and your last post appears to have been in November. All the posts you had that I saw listed had replies. I am new to the group, but have not seen your name that I remember (but then again, I haven't learned who everyone is yet.) I am sorry you felt hurt. For my part I don't answer much since I haven't had a revision yet. I am mostly just being encouraged by the others at this point. The pain is a bummer, isn't it?! I read your post from Nov. 18. You asked about what we take for the pain, and about our jobs and disability. I take Mobic in the morning, but by evening I need to add Tylenol. I wake up very sore. Sometimes I need Tylenol in the middle of the night, too. As for profession, I am a homeschool mom. I try to manage a home of 5 kids aged 6 to 15. I also play keyboard at church a couple of times a month. Otherwise I am not very active outside the home. My husband works in a factory. My kids have pretty bad allergies. Not only environmental, but also foods. Many foods. Peanuts and shrimp are the deadly ones. So the holidays were a trial since those two are at many parties. The peanut allergy is airborne for a couple of the kids. My 3 girls also have scoliosis, 2 of which wear night braces. The 13 year old's has improved, but he 11 year old's is steadily getting worse, so we are considering other options. The 9 year old's has improved with time, but she hasn't gone through the teen growth spurt yet. As for my condition, I did not have much pain until this fall. Episodes of pain kept increasing, until this fall it became constant. Physical therapy I started at the end of the year has gotten my torsioned sacrum back into alignment, although at yesterday's session she said it had slipped back a bit (but she fixed it again). That was disappointing because now I feel like I may have to do occasional P.T. sessions to fix that from time to time when I had hoped that when I finished the 4 weeks of 3 times a week therapy I would be "fixed." I guess that was wishful thinking. For me it is disappointing to not be painfree yet...because until this fall I was at least painfree between episodes of pain. While the pain is considerably less, it is still constant, and I rely on pain relievers for relief. Prolonged activity like either sitting or standing cause more pain. I have to keep varying my activity to stay comfortable and so I don't pay for it the next day. I am also scheduled to see a surgeon on Feb. 3. I am concerned especially with the fact that the last dr. said that my curves were at 32 and 35, when my original surgery had corrected them to around 20 degrees. I am still waiting on the original hospital records to confirm this as I was 14 at the time. The dr. I saw appeared not to believe that my fusion had changed that much. It was surprising to me, too. I hope the surgeon I'm seeing can shed some light on this, and also tell me what I can expect in the coming years, and of course, tell me if there's something I can do for pain. God bless you, Joanne. Diane VDW Michigan What is it with you people. I have posted several mesasages, asking for advise, etc... have not gotten any replies. Do I not fit into your little group. What qualifications do you need to "fit". do you have to have had the revision surgery??? I needed some advice from someone who has been there and done that, but all posts I have done have been completely ignored. It is very rude on all of your parts. I will keep reading the post, I might pick up on some advice I need by chance. But I am done trying to post and being ignored.You all seem to be a nice group. Maybe you all were shut out in your younger lives because of the scolosis, so you see a chance to turn it around and do someone else that way. Well, you have all brought out all of the ignored and left out feelings I had in high school. So, you have done what you wanted, even if you don't admit it outright.Thanks for nothing. ____________________________________________________________ Find success and happiness with drug and alcohol rehabilitation. Click now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2009 Report Share Posted January 14, 2009 Hi Joanne, Sorry Joanne, nobody meant to ignore your last post. It just slipped through the cracks. Sometimes, we take for granted that one of the other more " schooled " members will respond. I had revision 3 years ago, in Boston. I did not even have a diagnosis of flatback when I saw the flatback revision specialist but I knew I had it. There really is no qualifying factors for revision. It is not a matter of life and death for most. It is however a quality of life issue and decision. The weight of it is how much quality of life do we have and continue to have on a daily basis. My lumbar collapsed, so I was in pain, I was deformed enough so that I was very twisted in the torso, one shoulder was an inch or so below the other, I had to caulk my head forward and over to the right to be level. I held onto walls when I walked, I HAD to have a grocery cart in a store just to lean on. I could walk a total of 100 feet before stopping. I could do nothing with my son except cheer him on. I was on my way to a wheelchair and it was coming fast. That I had in common with the first time, scoli, hit me hard and fast at 14. The flatback and lumbar collapse got a lot worse at 45, surgery was at 46. I am better now, though I have continuing issues, some with neuropathy, other with hip pain but for the most part I am without meds, exercise and do my days just fine. I threw around a basketball with my son last night though, I did no jumping. I can definetely say, I have a better quaility of life because I had revision. How long will that remain so? Like everybody else that has had revision, we hope for a long, long time but it is still very much an unknown, how or what issues might arise from this class of revision flatback surgeries. For now though all is well and it is worth looking into. > > What is it with you people. I have posted several mesasages, asking > for advise, etc... have not gotten any replies. Do I not fit into > your little group. > > What qualifications do you need to " fit " . do you have to have had > the revision surgery??? > > I needed some advice from someone who has been there and done that, > but all posts I have done have been completely ignored. It is very > rude on all of your parts. > > I will keep reading the post, I might pick up on some advice I need > by chance. But I am done trying to post and being ignored. > > You all seem to be a nice group. Maybe you all were shut out in your > younger lives because of the scolosis, so you see a chance to turn it > around and do someone else that way. Well, you have all brought out > all of the ignored and left out feelings I had in high school. So, > you have done what you wanted, even if you don't admit it outright. > > Thanks for nothing. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2009 Report Share Posted January 14, 2009 Joanne, I am sorry you feel that way. This group has answered every one of your questions, with the exception of your question that was directed at Suzie less than 48 hours ago. If you haven't taken the time to use the search feature and understand a little more about Suzie's particular challenges, I would hope that you would. If you are thinking of questions, but not posting them, and just hoping that someone will " know " what you are wondering....well there is small chance of those questions getting answered. If you are asking questions, and you don't like the answers you are getting, that doesn't mean the questions were not answered. As pointed out, if you use the search feature, which is quite good in the " advanced " setting, you can usually find a lot of relevant information. If you wish to become more familiar to the group, the only way to do that is by posting more, not by lurking most of the time. I went back and read all your posts, (and the replies) and in several of them you acknowledge that you read, but rarely participate. That is not the two way conversation that is necessary in this format. Please also realize that most of the members who participate on a regular basis are long past their initial surgeries. They stay here doing the best that they can because the medical establishment that precipitated this problem doesn't do what we do: patient support. We are not medical professionals, we draw on our own experiences, and the chance that someone might have the same experiences as you is somewhat dependent on who is reading on that particular day...and in some cases they may not have the time or energy to recall the particulars of something that happened to them 5-10 years ago....or they may even feel that their recollection may not even be accurate. The further the founding members of this message board get from their revision surgery the more incumbent it is on EVERY other member to help and participate. Its not solely my job to make sure every post gets answered, although I actually did the calculation today, and of the 24,831 posts included in this board, I have authored .12% of them. It takes a tremendous amount of time from my life, and I do it because I think it is valuable to many. So if you want to talk about feelings, I will tell you that what you said seems unfair and hurtful to me. If as a member you feel that you are giving the most you can to this group, then by all means you should feel free to criticize, but if you are sitting by and letting others do the writing, the research, the sharing, and support ....and then act surprised when you chime in after almost 2 months with a particular question doesn't get answered right away..... can you really be surprised? In closing, please remember that there has to be equal give and take. This is not a " pay for service " situation. Diane's lovely post to you is an example of a heartfelt communication of support by a new member who is trying to be of help. I have said it before and I will say it again, we all play a role here. This is not MY group ..its OUR group. Please remember that you have responsibilities too. Take Care, Cam Quote Link to comment Share on other sites More sharing options...
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