Guest guest Posted December 11, 2003 Report Share Posted December 11, 2003 I've never understood that either , . I just don't get why food is more important than a good life. that is basically what it boils down to. Re: hi sad pat. so many diabetics just don't care while they still have a decent body. They only care after they get a serious diabetic complication like blindness, kidney failure, a stroke, neuropathy, amputation, etc. But often times, when that hits them, they give up and just die. It is rare for someone to get determined and buckle down after they are hit with a diabetic complication. Harry, myself, and am certain others on the list got fired up and began to get serious about diabetes after our complications with it. However, most don't. Once they get a complication, it is enough to remove any hope from them then they just give up and die. Very sad to me when after all, they don't have to do this, they*choose* to do this. Again, key words is have and choose. They don't *have* to do this, they *choose* to do this. Your friend doesn't *have* to run an a1c of 7 and eat like that and kill himself over time, he *chooses* to do that. Humans are so complex... I just am baffled why someone with diabetes would commit a slow suicide when they don't have to and can live a long and productive life? I guess that is why my wife as a counselor makes good money? People are just that messed up to do that? shrug? *scratch my head* I just don't get it? regards, hi > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > hi just wanted to let everyone know that I am starting > my > > > carb > > > > > > > counting, > > > > > > > > > > this morning I had two pieces of toast and three eggs with > > > cheese > > > > > I > > > > > > > also > > > > > > > > > > bought turkey for turkey and cheese sandwiches which I > have > > > tried > > > > > for > > > > > > > > > lunch > > > > > > > > > > yesterday, I still crave chips or something with my > sandwich > > > but I > > > > > am > > > > > > > > > hoping > > > > > > > > > > in time its easier to fight that,. is there anything else > > that > > > I > > > > > can > > > > > > > sub, > > > > > > > > > > with the sandwich to kill that craving for the chips? > either > > > way, > > > > > the > > > > > > > > > lunch > > > > > > > > > > was good and so was the breakfast. so here is hoping. > > > > > > > > > > > shane > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2003 Report Share Posted December 11, 2003 ah, that is a good way of putting it. Food is more important than life. I think it is something to do with folks finding some sort of emotional comfort in food. Very strange that it would have to be food. Couldn't they find it in walking? Computers? Reading books? Something that wouldnt' kill them? regards, hi > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > hi just wanted to let everyone know that I am starting > > my > > > > carb > > > > > > > > counting, > > > > > > > > > > > this morning I had two pieces of toast and three eggs > with > > > > cheese > > > > > > I > > > > > > > > also > > > > > > > > > > > bought turkey for turkey and cheese sandwiches which I > > have > > > > tried > > > > > > for > > > > > > > > > > lunch > > > > > > > > > > > yesterday, I still crave chips or something with my > > sandwich > > > > but I > > > > > > am > > > > > > > > > > hoping > > > > > > > > > > > in time its easier to fight that,. is there anything > else > > > that > > > > I > > > > > > can > > > > > > > > sub, > > > > > > > > > > > with the sandwich to kill that craving for the chips? > > either > > > > way, > > > > > > the > > > > > > > > > > lunch > > > > > > > > > > > was good and so was the breakfast. so here is hoping. > > > > > > > > > > > > shane > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have been removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2003 Report Share Posted December 12, 2003 There are adictions and then there are still other adictions. Obsessive compulsive behaviors are among the toughest disorders to treat. The more essential they are to life, the more difficult they are to treat. For example alcohol and drug adiction, while they are hard to treat, they are easy to treat compared to an adiction like food adiction or obsessive compulsive eating, since food is essential for life whereas alcohol and drugs are not essential. This is the reason anorexia and bulemia are most difficult to treat successfully. The same thing can also be said for obese people, who are looking for a quick weight loss and remaining lighter for a long time. It just doesn't work that way at all. It takes a very serious commitment and dedication to a completely different life style for obese people to lose weight and keep it off. It is a very serious matter and requires a lot of will and determination to be successful at losing weight and at the same time keeping it off for the rest of one's life, since those anxiety triggers can be fired unknowingly, causing the person to almost unconsciously start eating again. That is why any person wishing to lose weight must master relaxation techniques that can be employed at any time one of these anxiety triggers are fired. Just learning the anxiety triggers is complicated, since this is different for each person. It is complicated and mastering these techniques usually requires professional help in the form of progressive relaxation, hypnosis, cognative therapy, group support and or biofeedback. The good thing is that once a person has mastered the relaxation techniques, they are always with that person for the rest of their life. It is kind of like learning to ride a bicycle. Usually, once you learn to ride a bicycle, you can ride it for the rest of your life barring some physical problems. I treated obese people mostly with progressive relaxation, biofeedback and hypnosis with good results. Setting realistic goals is a good start. I would recommend that an obese person set a goal of at least one year of consistent effort and probably two years or more depending on the amount of weight to loose. They also need to know that any deviation from their course of treatment for the rest of their life can mean weight gain, and it is usually gained very rapidly. hi > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > hi just wanted to let everyone know that I am > starting > > > my > > > > > carb > > > > > > > > > counting, > > > > > > > > > > > > this morning I had two pieces of toast and three eggs > > with > > > > > cheese > > > > > > > I > > > > > > > > > also > > > > > > > > > > > > bought turkey for turkey and cheese sandwiches which > I > > > have > > > > > tried > > > > > > > for > > > > > > > > > > > lunch > > > > > > > > > > > > yesterday, I still crave chips or something with my > > > sandwich > > > > > but I > > > > > > > am > > > > > > > > > > > hoping > > > > > > > > > > > > in time its easier to fight that,. is there anything > > else > > > > that > > > > > I > > > > > > > can > > > > > > > > > sub, > > > > > > > > > > > > with the sandwich to kill that craving for the chips? > > > either > > > > > way, > > > > > > > the > > > > > > > > > > > lunch > > > > > > > > > > > > was good and so was the breakfast. so here is hoping. > > > > > > > > > > > > > shane > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have been > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2003 Report Share Posted December 12, 2003 Harry, I found this message from you helpful and constructive and thank you. Rita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2003 Report Share Posted December 12, 2003 yup, very good advice Harry and insight into eating disorders. My wife does a lot of eating disorder treatment and OCD therapy and she talks to me about these disorders trying to get me to understand why people do what they do. Of course, me being a computer programmer, I take in what I can and try to hold interest in it LOL. But how true what you say about food being an essential part of life and alcohol not being essential to living so that addiction of alcohol is in some ways, much easier to let go. Also, makes me think of Maslos hierarchy of needs. He had a point in that theory you know. hi > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > hi just wanted to let everyone know that I am > > starting > > > > my > > > > > > carb > > > > > > > > > > counting, > > > > > > > > > > > > > this morning I had two pieces of toast and three > eggs > > > with > > > > > > cheese > > > > > > > > I > > > > > > > > > > also > > > > > > > > > > > > > bought turkey for turkey and cheese sandwiches > which > > I > > > > have > > > > > > tried > > > > > > > > for > > > > > > > > > > > > lunch > > > > > > > > > > > > > yesterday, I still crave chips or something with my > > > > sandwich > > > > > > but I > > > > > > > > am > > > > > > > > > > > > hoping > > > > > > > > > > > > > in time its easier to fight that,. is there anything > > > else > > > > > that > > > > > > I > > > > > > > > can > > > > > > > > > > sub, > > > > > > > > > > > > > with the sandwich to kill that craving for the > chips? > > > > either > > > > > > way, > > > > > > > > the > > > > > > > > > > > > lunch > > > > > > > > > > > > > was good and so was the breakfast. so here is > hoping. > > > > > > > > > > > > > > shane > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have been > > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2003 Report Share Posted December 13, 2003 You're right, Harry. I have a friend-diabetic-who weighs over 300 punds and is only 5 ft. 4 inches tall. Her doctor at kaiser wants her to have the Phoebe proceedure, which reduces the size of the stomach with surgery. However, they are not recommending any pre-op counseling. she is saying that now kaiser is goiing to charge her $200 a day for each day she is in the hospital, so she can't afford it. that is not it all. she needs the type of conseling you have suggested, or she wil end up in a major depression afterwards-even if she does decide to have it done. IN the meantime, she is killing herself with food. Re: hi There are adictions and then there are still other adictions. Obsessive compulsive behaviors are among the toughest disorders to treat. The more essential they are to life, the more difficult they are to treat. For example alcohol and drug adiction, while they are hard to treat, they are easy to treat compared to an adiction like food adiction or obsessive compulsive eating, since food is essential for life whereas alcohol and drugs are not essential. This is the reason anorexia and bulemia are most difficult to treat successfully. The same thing can also be said for obese people, who are looking for a quick weight loss and remaining lighter for a long time. It just doesn't work that way at all. It takes a very serious commitment and dedication to a completely different life style for obese people to lose weight and keep it off. It is a very serious matter and requires a lot of will and determination to be successful at losing weight and at the same time keeping it off for the rest of one's life, since those anxiety triggers can be fired unknowingly, causing the person to almost unconsciously start eating again. That is why any person wishing to lose weight must master relaxation techniques that can be employed at any time one of these anxiety triggers are fired. Just learning the anxiety triggers is complicated, since this is different for each person. It is complicated and mastering these techniques usually requires professional help in the form of progressive relaxation, hypnosis, cognative therapy, group support and or biofeedback. The good thing is that once a person has mastered the relaxation techniques, they are always with that person for the rest of their life. It is kind of like learning to ride a bicycle. Usually, once you learn to ride a bicycle, you can ride it for the rest of your life barring some physical problems. I treated obese people mostly with progressive relaxation, biofeedback and hypnosis with good results. Setting realistic goals is a good start. I would recommend that an obese person set a goal of at least one year of consistent effort and probably two years or more depending on the amount of weight to loose. They also need to know that any deviation from their course of treatment for the rest of their life can mean weight gain, and it is usually gained very rapidly. hi > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > hi just wanted to let everyone know that I am > starting > > > my > > > > > carb > > > > > > > > > counting, > > > > > > > > > > > > this morning I had two pieces of toast and three eggs > > with > > > > > cheese > > > > > > > I > > > > > > > > > also > > > > > > > > > > > > bought turkey for turkey and cheese sandwiches which > I > > > have > > > > > tried > > > > > > > for > > > > > > > > > > > lunch > > > > > > > > > > > > yesterday, I still crave chips or something with my > > > sandwich > > > > > but I > > > > > > > am > > > > > > > > > > > hoping > > > > > > > > > > > > in time its easier to fight that,. is there anything > > else > > > > that > > > > > I > > > > > > > can > > > > > > > > > sub, > > > > > > > > > > > > with the sandwich to kill that craving for the chips? > > > either > > > > > way, > > > > > > > the > > > > > > > > > > > lunch > > > > > > > > > > > > was good and so was the breakfast. so here is hoping. > > > > > > > > > > > > > shane > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have been > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2003 Report Share Posted December 13, 2003 I agree. The operation needs to be done on the head, where the problem lies, not on the belly where the symptoms are. hi > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > hi just wanted to let everyone know that I am > > starting > > > > my > > > > > > carb > > > > > > > > > > counting, > > > > > > > > > > > > > this morning I had two pieces of toast and three > eggs > > > with > > > > > > cheese > > > > > > > > I > > > > > > > > > > also > > > > > > > > > > > > > bought turkey for turkey and cheese sandwiches > which > > I > > > > have > > > > > > tried > > > > > > > > for > > > > > > > > > > > > lunch > > > > > > > > > > > > > yesterday, I still crave chips or something with my > > > > sandwich > > > > > > but I > > > > > > > > am > > > > > > > > > > > > hoping > > > > > > > > > > > > > in time its easier to fight that,. is there anything > > > else > > > > > that > > > > > > I > > > > > > > > can > > > > > > > > > > sub, > > > > > > > > > > > > > with the sandwich to kill that craving for the > chips? > > > > either > > > > > > way, > > > > > > > > the > > > > > > > > > > > > lunch > > > > > > > > > > > > > was good and so was the breakfast. so here is > hoping. > > > > > > > > > > > > > > shane > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have been > > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2003 Report Share Posted December 13, 2003 very true but it is possible that both can work together to help a person. To explain. I know my wife had a friend get the stomach done and lost all her weight and got down to 120 pounds and she is 5 foot 4. She was stunning. She was gorgeous. All the guys who used to crack at her with fat jokes now wanted to put the move on her. She, obviously, was bitter. People couldn't love her for being her, they loved her for her body so that my wife's friend did ok but took some serious counseling etc. However, I know another fellow... ok in the head and was getting a grip on overeating with food via counseling and as a second option, once getting a grip on why he ate via counseling, he went for the stomach surgery. He is doing great to date. I guess it is a YMMV issue or something. I guess I am saying I have seen it faile and work the stomach reduction and counceling. Really depends on the person and their level of determination like you suggest Harry. Regardless, one thing is for certain, like you state Harry, treating the symptoms often times will do nothing for the person... you gotta go for the core/real problem. hi > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > hi just wanted to let everyone know that I am > > > starting > > > > > my > > > > > > > carb > > > > > > > > > > > counting, > > > > > > > > > > > > > > this morning I had two pieces of toast and three > > eggs > > > > with > > > > > > > cheese > > > > > > > > > I > > > > > > > > > > > also > > > > > > > > > > > > > > bought turkey for turkey and cheese sandwiches > > which > > > I > > > > > have > > > > > > > tried > > > > > > > > > for > > > > > > > > > > > > > lunch > > > > > > > > > > > > > > yesterday, I still crave chips or something with > my > > > > > sandwich > > > > > > > but I > > > > > > > > > am > > > > > > > > > > > > > hoping > > > > > > > > > > > > > > in time its easier to fight that,. is there > anything > > > > else > > > > > > that > > > > > > > I > > > > > > > > > can > > > > > > > > > > > sub, > > > > > > > > > > > > > > with the sandwich to kill that craving for the > > chips? > > > > > either > > > > > > > way, > > > > > > > > > the > > > > > > > > > > > > > lunch > > > > > > > > > > > > > > was good and so was the breakfast. so here is > > hoping. > > > > > > > > > > > > > > > shane > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have been > > > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2005 Report Share Posted July 23, 2005 Welcome Ann. I too have spina bifida occulta and many of the same problems you are experiencing, though most of my pain is in my lower back. I do have a lot of pain in my legs, especially below the knee. I talked to my Dr today and we are trying to schedule a myelogram to rule out tethering. I have many of the same disc issues that you have also. I have degenerative disc disease, shot facet and SI joints to go along with the SBO issues. I wish you luck. Great people here on this site too and they have been tremendously helpful. I also take medication by the handful just to have any kind of quality of life. I am on percocets and Soma (muscle relaxers) My Dr is trying to get me to agree to go to a pain management clinic but I am reluctant to be their guinea pig so they can justify giving me the meds I need. I am not a good pain management patient. I know my body, what works and what doesnt and I have already gone that route and not really open to it. No physical therapy for me either as I believe the last PT I went through just made my condition worse. Good luck and welcome to the group Jules Hi. My name is Ann and I am new to the website. I have been reading your letters and I am amazed to find that I am not the only adult living with SB. Most of the doctors all of my life had me pretty much believing I was an oddity. I read letter after letter and I sit with my mouth open realizing that the stories I read could be my own. So many people discribe the feelings and the pain I feel every day...however I realize how lucky I am compared to so many that have had surgery after surgery, or are confined to a wheelchair. I just turned 52 this week. I am married 29 years with two healthy children (thank God). My daughter is 25 and my son is 20. I live in the NYC area and I work as a medical receptionist. When I was born, my mom took me from one doctor to another about the " dimple " on my back. She was told that it was merely a birthmark. Growing up, the pains in my right leg were " obviously " growing pains. When I was 14 and fractured my toe and it doubled in size and turned all colors, but I hadn't remembered doing anything to it, they got a little suspicious and did a myelogram. They told my parents at that time that I had Spina Bifida Occulta and that I would probably never have children. My mom was besides herself and hid that information from me for years. I met my husband when I was 14, he was 16. We dated all through high school and worked toward putting together a wedding and an apartment before we married 8 years later. I always had loss of feeling in my right leg, no reflexes, but terrible terrible pain down the leg into the ankle part. As I got older, the sensations changed, but the pain got worse. Year after year I would go from one neurologist to another, noone fully understanding the condition. I would be handed prescriptions, ordered to go for therapy and pain management centers. I was later upgraded to being diagnosed with SB with a tethered cord and lipoma. Most of the time I was told that SB in adults was not understood, as most do not grow to a very ripe old age. I have all kinds of herniated discs cervical and lumbar. I suffered neck pain for a few months a few years back from the hernations, but never had any back pain from the spina bifida. When I explained to doctors that having a full bladder created leg pain, or that constipation created havoc with the pain, I was fluffed off; noone quite got it. With all of that until only maybe three months ago, I have never never suffered back pain...only leg pain. I recently have pain so bad by my waist/hip and down my leg that I don't ever get a decent night's sleep. I take whatever pain killers I can get my hands on by the handfuls. Going to the movies or theatre is a nightmare because I cannot sit still without terrible pain. I have learned more about myself from the people on this website than any doctor I have every seen or any website I have browsed. I am learning things from the experiences of real people living couregously with this all of their lives. I worry about aging with SB. It seems that the pain is getting so bad. I was never ever offered the possibility of untethering my spina cord. Maybe because of my age...maybe it's too late...but I worry about being able to walk in a few years, as I find now that the back pain is getting more and more intense. I cannot find a doctor who specializes in SB in the NYC area. If anyone knows where I can start, I would appreciate it. I have tried to contact some facilities on the SBA website...but each phone number I contact gives me another until I wind up back where I started. I know that now SB is recognized in the delivery room...not like in the dinosaur days when I was born. I know that there is help for newborns and for that I am greatful, since I do not know how my future grandchildren will be affected; something I worry about so very much. I wonder how much worse my pain will become as I get older, and whether or not I can look forward to my ripe old years with my wonderful husband. I am greatful that I found this website, if for nothing else to know that I an not alone. I wish all of you painfree days...or moments...sometimes realizing that for a few moments I am not hurting is like a gift. I stop and try to capture the feeling (or lack of). My best to all of you, Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2005 Report Share Posted July 23, 2005 Hi Jules I have seen your name many times on this website. You seem to be so very supportive with everyone. Right off the bat, someone e-mailed me with the name of a top pediatric neurosurgeon in NYU that did his second untethering procedure...information I have been trying to get for so many years. The person did not leave a signature, but through the e-mail address, thank you so very much. I was told about 20 years or so ago that if I continued to go from one doctor to another that someone was going to talk me into surgery, and that particular doctor did not agree that I should take a chance. Ten years or so later though I don't think that I have that choice anymore. I am scared to death of surgery, but I do want to know what the future holds if I do not go for it. Maybe now I can get some answers. Thank you all for the so very quick response. I am addicted to the website checking in a few times a day. I feel without knowing any of you that I truly know all of you. It's a beautiful day here today in NYC; clear and not as humid as it has been all week. I hope all have a wonderful day. Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2005 Report Share Posted July 23, 2005 Dr. Jeffery H Wisoff , is the director of NYU's pediatric neurosurgury department...and a top rated surgeon is his field. He handled my second untethering procedure. (212)263-6419 I had both my surgeries done as an adult, and it has been my experience that pediatric neurosurgeons are much more suited to treat the condition because nowadays it is most often surgically treated amongst children...and rarely is treated as often by standard neurosurgeons. He is a great doctor who won't rush you to surgery...he has a pragmatic bedside matter, and I think if you have a consultation with him he would assauge some of your fears. > Hi. My name is Ann and I am new to the website. I have been reading > your letters and I am amazed to find that I am not the only adult living with > SB. Most of the doctors all of my life had me pretty much believing I was an > oddity. I read letter after letter and I sit > with my mouth open realizing that the stories I read could be my own. So > many people discribe the feelings and the pain I feel every day...however I > realize how lucky I am compared to so many that have had surgery after surgery, or > are confined to a wheelchair. > > I just turned 52 this week. I am married 29 years with two healthy children > (thank God). > My daughter is 25 and my son is 20. I live in the NYC area and I work as a > medical receptionist. > > When I was born, my mom took me from one doctor to another about the " dimple " > on my back. She was told that it was merely a birthmark. Growing up, the > pains in my right leg were " obviously " growing pains. When I was 14 and > fractured my toe and it doubled in size and turned all colors, but I hadn't > remembered doing anything to it, they got a little suspicious and did a myelogram. > They told my parents at that time that I had Spina Bifida Occulta and that I > would probably never have children. My mom was besides herself and hid that > information from me for years. > I met my husband when I was 14, he was 16. We dated all through high school > and worked toward putting together a wedding and an apartment before we > married 8 years later. > > I always had loss of feeling in my right leg, no reflexes, but terrible > terrible pain down the leg into the ankle part. As I got older, the sensations > changed, but the pain got worse. Year after year I would go from one neurologist > to another, noone fully understanding the condition. I would be handed > prescriptions, ordered to go for therapy and pain management centers. I was later > upgraded to being diagnosed with SB with a tethered cord and lipoma. Most of > the time I was told that SB in adults was not understood, as most do not grow > to a very ripe old age. > > I have all kinds of herniated discs cervical and lumbar. I suffered neck pain > for a few months a few years back from the hernations, but never had any back > pain from the spina bifida. > When I explained to doctors that having a full bladder created leg pain, or > that constipation created havoc with the pain, I was fluffed off; noone quite > got it. > With all of that until only maybe three months ago, I have never never > suffered back pain...only leg pain. I recently have pain so bad by my waist/hip and > down my leg that I don't ever get a decent night's sleep. I take whatever > pain killers I can get my hands on by the handfuls. Going to the movies or > theatre is a nightmare because I cannot sit still without terrible pain. > > I have learned more about myself from the people on this website than any > doctor I have every seen or any website I have browsed. > I am learning things from the experiences of real people living couregously > with this all of their lives. > > I worry about aging with SB. It seems that the pain is getting so bad. I > was never ever offered the possibility of untethering my spina cord. Maybe > because of my age...maybe it's too late...but I worry about being able to walk in > a few years, as I find now that the back pain is getting more and more > intense. > I cannot find a doctor who specializes in SB in the NYC area. If anyone > knows where I can start, I would appreciate it. I have tried to contact some > facilities on the SBA website...but > each phone number I contact gives me another until I wind up back where I > started. > > I know that now SB is recognized in the delivery room...not like in the > dinosaur days when I was born. I know that there is help for newborns and for that > I am greatful, since I do not know how my future grandchildren will be > affected; something I worry about so very much. > I wonder how much worse my pain will become as I get older, and whether or > not I can look forward to my ripe old years with my wonderful husband. > > I am greatful that I found this website, if for nothing else to know that I > an not alone. > I wish all of you painfree days...or moments...sometimes realizing that for a > few moments I am not hurting is like a gift. I stop and try to capture the > feeling (or lack of). > > My best to all of you, > Ann > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2005 Report Share Posted July 23, 2005 Ann, I was told the very same thing not too long ago at my last neurosurgeons appt. First he told me that my back is too bad, too many things wrong........for him to do surgery. He also added that I can keep seeing other neurosurgeons until I get what I want (surgery) THEN I will be right back at the 1st neurosurgeon begging him to FIX what the other neurosurgeon screwed up. He told me to be very careful what I wish for, especially with as many back problems as I have. He said he gets a LOT of patients that have been operated on by more aggressive surgeons who dont mind very complicated cases. He said 85% of his patients are ones that have been operated on by aggressive surgeries. I still want surgery. I take so many pills just to have any quality of life. I am one of those people that never take even aspirin and I've eaten over 1000 percocets since January. (just got a prescription for 360 more) Thats no way to live for me, its killing me.........and sometimes my throat just closes up when I try to swallow a pill, I just detest it. I am going back to my local neurosurgeon for a myelogram. If it doesnt show anything conclusive I am going to request a discogram. I dont want either test but I feel like we are missing something here and I just want ANSWERS. Then I can decide what course of action to take. I have no doubt my spinal cord is tethered, I have all the symptoms. The major NS I just say at the University of KY said I would have had problems when I hit my growth spurt when I was a kid. I asked him what about after a major back injury? He shrugged it off. I knew right then and there he was NOT the Dr I needed. Not if he was going to shrug off the facts. (I had a major back injury in 91 and an even worse back injury in 93) So I know what you are going through with this SBO crap because like me, you have other things going on as well that complicates the whole deal. I think I am going to try to locate a ped ns somewhere in KY or TN (Nashville, like at Vanderbilt University) and go from there. (after the myelogram with the local NS) These Drs are missing something and I am determined to find out what it is. The only diagnosis' they have agreed on is spina bifida occulta and degenerative disc disease with one slightly bulgind disc. Jules I was told about 20 years or so ago that if I continued to go from one doctor to another that someone was going to talk me into surgery, and that particular doctor did not agree that I should take a chance. Ten years or so later though I don't think that I have that choice anymore. I am scared to death of surgery, but I do want to know what the future holds if I do not go for it. Maybe now I can get some answers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2005 Report Share Posted July 23, 2005 No problem. However, just because this kind of information is often sensative. I want you to understand that I am in no way qualified to give medical advice and am certainly in no position to say that Dr. Wisoff can in fact surgically treat you. However, I do believe he is an exceptional neurosurgeons and worth-- if for nothing else--consultating with you on this matter because he has followed up on tcs with many patients and is recognized as a top surgeon in the field, investigating surgical and non-surgical methods of treatment. Some people have also had good experiences with Dr. Mckormick(might have spelled this wrong) who is affiliated with columbia presbyterian. > Hi Jules > I have seen your name many times on this website. You seem to be so very > supportive with everyone. > Right off the bat, someone e-mailed me with the name of a top pediatric > neurosurgeon in NYU that did his second untethering procedure...information I have > been trying to get for so many years. The person did not leave a signature, > but through the e-mail address, thank you so very much. > I was told about 20 years or so ago that if I continued to go from one doctor > to another that someone was going to talk me into surgery, and that > particular doctor did not agree that I should take a chance. Ten years or so later > though I don't think that I have that choice anymore. I am scared to death of > surgery, but I do want to know what the future holds if I do not go for it. > Maybe now I can get some answers. > > Thank you all for the so very quick response. > I am addicted to the website checking in a few times a day. I feel without > knowing any of you that I truly know all of you. > > It's a beautiful day here today in NYC; clear and not as humid as it has been > all week. > I hope all have a wonderful day. > > Ann > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2005 Report Share Posted July 23, 2005 The funny part about it is that I am a medical receptionist at a Radiology facility that does myelograms, MRI'S, CT's and all. The radiologists I work for confirmed a tethered cord and a lipoma...and I thought I was going to a super neurologist with a wonderful reputation; but you know, I think he knows nothing about SB except what he reads in books. He suggested for me what he would suggest routinely for all of his other patients...pills pills and more pills. Their answer to everything is anti-depressants which is to numb the pain center of the brain, physical therapy and exercise. My friends watch me pop pain meds and sometimes I feel like a druggie! Unless people see blood, they really can't understand the pain you feel...it's just not possible for them. My husband of 29 years is so used to me grabbing my leg in pain that he hardly notices anymore. I used to be able to walk off the pain in my leg...but now there is horrible back pain...so I can't rest comfortably and I cannot walk comfortably! I'm up all night walking the floor and on the computer for answers, then I try to work all day. I'm getting older and maybe less tolerable of it all... I got some information from someone here that may be a real break for me. . I'm calling a pediatric neurosurgeon this week at NYU to see if I can get an appointment. I'm very excited about speaking to someone about SB that I don't have to explain it to first. Someone that can tell me how I'm feeling and why...and more importantly, how I'm going to feel down the line. I hope you find answers. I hope they're doing a lot of research because I hope to have grandchildren someday soon, and I hope to God that I pass on only my hair color and not this horrible condition. I thank God every day that my children were not afflicted. Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2005 Report Share Posted July 23, 2005 Jules, when you say that you have all the symptoms of a tc, what exactly are they? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2005 Report Share Posted July 23, 2005 In a message dated 7/23/2005 6:01:51 PM Eastern Standard Time, jennygomez@... writes: Just wish I could find as good as a Neurologist for her.. , where are you located? Have you tried a neurosurgeon instead of a neurologist? has never seen a neurologist, only the neurosurgeon for his follow up visits... Connie Mom to Sara 13, Nicky 7 (GI issues, megacolon), and 5 (CRS/VACTERLS incl. tethered spinal cord (repaired 9/00) perineal fistula imperforate anus (repaired 5/00), single kidney, PDA (closed on its own), malformed pelvis and hemisacrum, mild long segment levoscoliosis with hemivertebrae, extra left rib, genital anomalies with hypospadius (repairs 9/00,11/00, 5/01,12/01,12/03), hypoplastic left leg with clubfoot (repaired 5/01) and 4.5cm length discrepancy - wears AFO and 3.5cm lift, SUA, GI reflux, DGE/gastroparesis, mild swallowing dysphagia, eating issues and the most beautiful smile ever) conni60640@..., _http://members.tripod.com/conni60640-ivil/_ (http://members.tripod.com/conni60640-ivil/) Support the VACTERLS conference, shop online at iGive at more than 500 stores, like Lands End, & Noble and Target...LL Bean, Sears and Old Navy! Shop iGive here... _http://www.igive.com/html/brand.cfm?b=1785_ (http://www.igive.com/html/brand.cfm?b=1785) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2005 Report Share Posted July 24, 2005 Ann, I am an Imaging Center Manager, and that's who diagnosed my duaghter.. Funny you should say that about the Neurologist.. My daughters Neurologist fought with me after surgery that she was still tethered... I had to explain that she will always LOOK tethered, but you have to look for change.. etc.. It was so frustrating.. I have not yet found a GOOD neurologist who knows what they are talking about when it comes to tethered cord. We are VERY fortunate that my Pediatrician is well versed in TC and is EXCELLENT.. His partner was not so well versed and she was just diagnosed with the Adult onset of TC.. Go figure.. So we definately have two good people who know a lot about it.. Just wish I could find as good as a Neurologist for her.. JenNY > > The funny part about it is that I am a medical receptionist at a Radiology > facility that does myelograms, MRI'S, CT's and all. The radiologists I > work for > confirmed a tethered cord and a lipoma...and I thought I was going to a > super > neurologist with a wonderful reputation; but you know, I think he knows > nothing about SB except what he reads in books. He suggested for me what > he would > suggest routinely for all of his other patients...pills pills and more > pills. > Their answer to everything is anti-depressants which is to numb the pain > center of the brain, physical therapy and exercise. My friends watch me > pop pain > meds and sometimes I feel like a druggie! Unless people see blood, they > really can't understand the pain you feel...it's just not possible for > them. My > husband of 29 years is so used to me grabbing my leg in pain that he > hardly > notices anymore. > I used to be able to walk off the pain in my leg...but now there is > horrible > back pain...so I can't rest comfortably and I cannot walk comfortably! I'm > up > all night walking the floor and on the computer for answers, then I try to > work all day. I'm getting older and maybe less > tolerable of it all... > I got some information from someone here that may be a real break for me. > . > I'm calling a pediatric neurosurgeon this week at NYU to see if I can get > an > appointment. I'm very excited about speaking to someone about SB that I > don't > have to explain it to first. Someone that can tell me how I'm feeling and > why...and more importantly, how I'm going to feel down the line. > I hope you find answers. I hope they're doing a lot of research because I > hope to have grandchildren someday soon, and I hope to God that I pass on > only > my hair color and not this horrible condition. I thank God every day that > my > children were not afflicted. > > Ann > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2005 Report Share Posted July 24, 2005 Connie, We do see her pediatric Neurosurgeon for follow-up visits.. but he ttoo thinks we should also see a neurologist.. she still has neurological club feet.. I was looking at 's feet pictures.. and Lidias were like that before her detethering and after.. Not the bones just the muscles.. Hers might not have been as severe.. but she used to walk on the tops of her feet instead of the bottoms.. JenNY > > > In a message dated 7/23/2005 6:01:51 PM Eastern Standard Time, > jennygomez@... writes: > > Just wish I could find as good as a Neurologist for her.. > > > > , where are you located? Have you tried a neurosurgeon instead of a > neurologist? has never seen a neurologist, only the neurosurgeon for > his > follow up visits... > > Connie > Mom to Sara 13, Nicky 7 (GI issues, megacolon), and 5 > (CRS/VACTERLS incl. tethered spinal cord (repaired 9/00) perineal fistula > imperforate anus (repaired 5/00), single kidney, PDA (closed on its own), > malformed pelvis and hemisacrum, mild long segment levoscoliosis with > hemivertebrae, extra left rib, genital anomalies with hypospadius (repairs > 9/00,11/00, > 5/01,12/01,12/03), hypoplastic left leg with clubfoot (repaired 5/01) and > 4.5cm > length discrepancy - wears AFO and 3.5cm lift, SUA, GI reflux, > DGE/gastroparesis, mild swallowing dysphagia, eating issues and the most > beautiful smile > ever) > conni60640@..., _http://members.tripod.com/conni60640-ivil/_ > (http://members.tripod.com/conni60640-ivil/) > > Support the VACTERLS conference, shop online at iGive at more than 500 > stores, like Lands End, & Noble and Target...LL Bean, Sears and Old > Navy! > Shop iGive here... _http://www.igive.com/html/brand.cfm?b=1785_ > (http://www.igive.com/html/brand.cfm?b=1785) > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2007 Report Share Posted February 12, 2007 Hey Keliz, You went MIA or was it me that did? lol I've been confused for a while now, so there isn't any telling! lol I'm so sorry to hear about the IBS. I know you must feel better now with the new meds. It's amazing what some " right " meds can do for us isn't it? I'm so happy to hear you are feeling better And I 'm glad it didn't turn out to be gallbladder disease either. We must keep all our organs we can for as long as we can. I think when we lose them, other things begin to happen. It stands to reason. Glad your weather is letting up for you too. Not yet here. We are expecting snow this week again. Today it's rain. We need the water and I love the snow, but I think I've just about had my fill of moisture this year now. It can slow down. lol We have a Lab and of course he doesn't believe in grass. Since getting him a yr ago, we have no grass anymore, so that means lots of MUD! I hate it. Our dogs are all house dogs, so they are in and out. We have to keep a blanket in front of the door all the time it seems. We tried the towels, but with 3 dogs, it wasn't big enough, we upgraded to a blanket. lol The things we do for our dogs. Actually we are getting rid of the Lab. I sure hate to, but I can't stand to put a dog outside and my house just isn't big enough for 2 big dogs, one little one and 3 adults. And all three dogs are on my heels at all times. They are in every room I go to. So we are down grading. The boxer will go too, he belongs to my oldest son and he is getting a house, so he'll take him now. Thank God! Thanks for the congrats on the scooter lift. I'm so excited. I can't wait to get out into the public again. But we do save money by me being housebound. lol I'll have to try and do good at not spending a lot. Right now, I just want to get out and I don't need money to do so. I can think of many places to go that won't cost me a dime, except gas and something to drink. lol I sure wish Jena would post. I didn't have her phone number, but I found ONE man in the State of Georgia that is the same as her hubby's. I called it and there was an answering machine. I just asked that she email me. Perhaps her computer is broke. I didn't think about that. Maybe I should try and see if her son has a number listed and try them both again. I think I will do that later today. I'll let you know if I'm successful. I sure do miss her She's a sweetheart. I hope you have a great day Kaliz! Hugs, Tommie Hi I have been having a bout of severe IBS so I have not been posting. It has been horrible. Now the MDs have me on antibiotics and a muscle relaxant for the colon and I am feeling much better. I had been sick for about 2 months and thought I had gallbladder disease. I was amazed it was only IBS. Tommie I heard about your new lift, congrats. God does answer our prayers sometimes. It is good to see everyone on the boards again, havent seen Jena tho, sorry. It sure has been nice here for a change, 50's or 60's and all our snow is melting, YEH. Hubby doesnt work from home anymore so I miss him being home all day. It was nice knowing someone was there, just in case. Well, I hope the sun is shinning for everyone, keliz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2007 Report Share Posted April 4, 2007 Hi all Im in a bit of a quadey, Ive been loosing weight ( 90) pounds so far,I want to have the lap band surgery to help loose more, Im afraid that I may have the RSD spread if I do.. any suggestions ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2007 Report Share Posted April 4, 2007 Kaff, I have RSD in my left arm. I didn't make a connection that it would spread if I had Bariatiric Surgery. My Doctors are all recommending it, including my pain doc! Gayla http://chronicpain-byladyfrog.com hi Hi all Im in a bit of a quadey, Ive been loosing weight ( 90) pounds so far,I want to have the lap band surgery to help loose more, Im afraid that I may have the RSD spread if I do.. any suggestions ? ________________________________________________________________________________\ ____ Be a PS3 game guru. Get your game face on with the latest PS3 news and previews at Yahoo! Games. http://videogames.yahoo.com/platform?platform=120121 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2007 Report Share Posted April 5, 2007 WHEW thank you soo much, that eases me alot,Kathi --- Gayla Esch wrote: > Kaff, I have RSD in my left arm. I didn't make a > connection that it would spread if I had Bariatiric > Surgery. My Doctors are all recommending it, > including my pain doc! > > Gayla > http://chronicpain-byladyfrog.com > > > > > > hi > > Hi all > Im in a bit of a quadey, Ive been loosing weight ( > 90) pounds so > far,I want to have the lap band surgery to help > loose more, Im afraid > that I may have the RSD spread if I do.. any > suggestions ? > > > > > > > ________________________________________________________________________________\ ____ > Be a PS3 game guru. > Get your game face on with the latest PS3 news and > previews at Yahoo! Games. > http://videogames.yahoo.com/platform?platform=120121 > > [Non-text portions of this message have been > removed] > > Teddybear hugs ________________________________________________________________________________\ ____ It's here! Your new message! Get new email alerts with the free Yahoo! Toolbar. http://tools.search.yahoo.com/toolbar/features/mail/ Quote Link to comment Share on other sites More sharing options...
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