Guest guest Posted September 6, 2000 Report Share Posted September 6, 2000 hi donna, welcome to the list--happy you are here. i hope you will learn a lot and get support that is nice to hear for a change. there are a lot of emails each day--hope you can keep up with it--it is hard sometimes--but lots of good info out there. again, welcome!!! brigit Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2000 Report Share Posted September 8, 2000 welcome to all the new people in the last couple of days--judy, beth and kristi--glad you are here and i hope you gets lots of info that helps to support you with this difficult decision (not that the decision was that difficult to make, but living with the rest of ther world after you've made it sometime is) ) ask lots of questions as there is a wealth of knowledge among the members here. again, welcome to the list!! brigit Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2000 Report Share Posted December 27, 2000 Dear Cyndi , Firmness and consistancy are the keys to keeping her behavior in line.If everyone around her insists on the same behavior she will realize,after a few battles that that is the way things are going to be .Timeouts are greatalso for keeping unwanted problems from escalating.My grandson is 8 and they are still very effective for him. Hope this helps --- Cyndi <cyndi0633@...> wrote: > Hi, > My name is Cyndi, I was on the list about a year ago > and dropped out because I was soooo busy with > therapists and such. Anyway I finally seem to have > my > life in somewhat of an order so I'll try again . I > do > have a question. Abby is 2 years old, and I realize > that some of her problem is just being 2, but she is > very willful and I need some suggestions about > discipline. My other child was very docile and I'm > not sure how to handle all this aggressive behavior. > Abby is the light of our lives and has been since > she > was born. Hope you all had a Merry Christmas. > > Cyndi, > Mom to Abby 2yrs DS, Shanna 21 nds > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2001 Report Share Posted January 21, 2001 hi charmaine, welcome to the list--glad you have made the decision to look into vaccines!!! also, good to hear that your son's have "outgrown" their allergies--hope they don't come back!! you will find lots of info coming thru this list as to different vaxes and different people's feelings on how important each one is--personally, i will no longer do ANY vaxes with my boys, as i just am not sure if they actually work at all. there is absolutely no positive proof showing that vaxes work at all, it's all just based on the theory that they work and then they use statistics to hsow that after vax introductions disease rates fell--well, disease rates were falling before introduction of vaccines and there are lots of reasons why, but no compelling evidence that they really work and lots of questions as to whether the massive amount of them now used is casuing LOTS of harm. so, as far as the importance of them--i'd say there is no reason to vax, but that's something you'll have to decide for yourself. i'll take my chances with the possibility of my kids getting a disease naturally, rather than the risks involved with the deadly ingredients in vaxes, not to mention the assault on their immune system. anyway, didn't mean to ramble on and on...) good luck and again welcome!! brigit, in albany Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2001 Report Share Posted January 24, 2001 Hi Charmaine, I also live in TO. Both my kids were born at home with midwives, and I'm a student midwife at Ryerson myself. I just wanted to let you know there's someone else here from TO. in ON Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2001 Report Share Posted February 23, 2001 hi jen, welcome to the list!! brigit, in albany ny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2001 Report Share Posted May 7, 2001 Welcome to the group Kresta! Nanci in Michigan Hello Hi, I just wanted to introduce myself. My name is Kresta and I have a 4 month old baby girl named Siara. She is the light of my life and after researching all kinds of information regarding pregnancy, birth and parenting, I have chosen the " natural " ways in more cases than one. My husband and I hired a Doula to help us in our birth, which was the most amazing experience of both of our lives. I was able to have Siara naturally with no medical interventions. I never knew my body could do such an amazing and wonderful thing!!! Ever since that glorious day, my baby has had the best possible care provided to her. I chose to be a stay at home mommy to her and when she's napping, I get on my computer and search the internet for any and all information I can find for the best possible way to care for her. I'm glad to be a part of this group and I look forward to all of the information I can get from it! Kresta Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2002 Report Share Posted December 15, 2002 Hi, I'm new here. I've been writing to the scoliosis list and found my way to this group. I have found this interesting as I'm trying to find out what the issues are for me lately. I'm between orthopedic surgeons so I'm waiting for a medical opinion. I did not have surgery. I wore the Milwaukee brace and then after time my scoliosis progressed. Now I have degenerative arthritis throughout my back. Over the past year or so I've begun to bend forward. To pull myself up feels like I'm pulling every muscle in my lumbar area. I've read that there are some incidences of non-surgically induced flatback from this condition and now I'm curious. I saw a picture of someone with this on a website and it looked like what I too often see in the mirror. Does anyone know any more about this? How common (or probably un-common) are cases of non-surgical flatback when degenerative arthritis sets in with scoliosis? Is this related to what I describe as a feeling of an elephant sitting on my lumbar spine? Nice to have joined all of you and thanks in advance for your responses. Gloria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2003 Report Share Posted July 14, 2003 Welcome to our misery. You should go to the group website and browse through the stuff in " Links " , and " Files " . Also, add your info to the " contact " table in " Database " . It seems we can add you to the list of Samterites for whom surgery is a very short-lived solution. I haven't gurgled nasal water, but my congestion did lead to a kind of sleep apnea. Now that I'm more or less cleared up, sleeping is great. regards, Ken West > From: " Sue Tufts " <runaroundsuuue@...> > Reply-samters > Date: Mon, 14 Jul 2003 17:44:18 -0000 > samters > Subject: Hello > > I'm glad that I found this newsgroup. I am currently going in for my > third sinus surgery (since 1999). I have samter's, sinusitis, and I > also beleive I have fungal sinusitis as well. My new ENT was able to > point out some possible areas on my CAT scans. I am hopeful she will > help me " get back to normal " ... > > I just wanted to see how everyone deals with these syndromes? I am a > high school teacher and only 28. I have had these problems for the > past 5-6 years. It was the aspirin sensitivity that started first. > I just get really frustrated and depressed at times. Especially when > I feel I can't perform at my best. I always try to smile but I don't > like always feeling sick. I've totaled approx. 320 days of > antibiotics in the past year and a half... > > How do all of you cope with this? I imagine this is a good place to > start. Thank god I have a really supportive boyfriend who has helped > me through my constant headaches and other symmptoms... > > One more question... does anyone else here ever get so congested that > they are " gurgling water " in their nose at night?? My boyfriend > says that I sometimes do. No wonder why I don't sleep well sometimes. > > Anyways, thanks for listening! > > Good health to you all! > > sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2003 Report Share Posted September 2, 2003 Hello, , and welcome. I took the liberty of passing your message on to a very nice UK gal I met on another flatback forum, and hopefully she'll receive it and respond. She had a very bad case of flatback, and had revision surgery a few months ago somewhere in England. So certainly the condition is known over there, but I understand it requires a fight to get sent to the right surgeon. I wish you the best in your search for help. Sharon Hello Hi I have just joined this group and thought I should say hello. I am 41 and have had harringtons inserted in 1978 for a right sided thoracic idiopthic scoliosis. Fusion extends to t3. My heath has been excellent until aout 2 years ago, when the shpae of my back began to change, and I started to get lower back and neck pain with belief that the rib hump was worsening. Two years on after lots of consultations, the answer from surgeons is, There is nothing wrong!, What is flat back!, You have had 20 good years what more do you want! The x rays look the same, so there cannot be anything wrong! Although I cannot be sure that I have flat back, I do have changes in the shape of my rib cage, lying down in painful, sitting in front of a computer is painful and driving is becoming impossible. So after much searching on the net, I find this site. Its very interesting reading others experiences, although its clearly very disturbing as well. The UK is light years behind the US on this matter, and there seems a fear here in accepting this condition due to some possibility of legal action Is this the position in the US? I look forward to reading more on this site, and raising the awareness of this condition Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2003 Report Share Posted September 2, 2003 , Welcome to the Feisty group. I wish I had some good information to offer you regarding diagnostic and treatment resources for Harrington Rod Malalignment Syndrome (flatback, also referred to as fixed sagittal imbalance). It does sound kind of challenging to locate the kind of help you need for this syndrome in the U.K. On the other hand, there may be some stellar British revision surgeons who simply have not set up Web pages or acquired sufficiently vocal " fans " to sing their praises and publicize their skills! At any rate, I hope you will keep us posted as to what you find out as you continue to research the situation. (Members of this group have likewise mentioned that it is not so easy to find a revision surgeon in Canada.) I suspect you are right about a link between nonacceptance of HARMS and fear of possible legal action. To my knowlege, no one here in the US has yet filed a lawsuit in connection with the Harrington rod, but medical professionals here are ever mindful of their potential liability for all kinds of things. In 3 years of corresponding with scoliosis veterans regarding their Harrington rod problems, I have heard innumerable anecodotes regarding HARMS-phobic docs. People have written to me that their doctors ignored and misdiagnosed their flatback, fudged medical records, " lost " medical records, or even refused to see them or speak to them about problems resulting from earlier Harrington rod surgery. Thankfully, more and more surgeons are now acknowleging the Harrington rod problem, and intervention seems more readily available (as does an accurate diagnosis) -- but we have a long way to go. > Hi > I have just joined this group and thought I should say hello. > I am 41 and have had harringtons inserted in 1978 for a right sided > thoracic idiopthic scoliosis. Fusion extends to t3. > My heath has been excellent until aout 2 years ago, when the shpae of > my back began to change, and I started to get lower back and neck > pain with belief that the rib hump was worsening. > Two years on after lots of consultations, the answer from surgeons > is, > There is nothing wrong!, > What is flat back!, > You have had 20 good years what more do you want! > The x rays look the same, so there cannot be anything wrong! > > Although I cannot be sure that I have flat back, I do have changes in > the shape of my rib cage, lying down in painful, sitting in front of > a computer is painful and driving is becoming impossible. > So after much searching on the net, I find this site. Its very > interesting reading others experiences, although its clearly very > disturbing as well. > The UK is light years behind the US on this matter, and there seems a > fear here in accepting this condition due to some possibility of > legal action Is this the position in the US? > > I look forward to reading more on this site, and raising the > awareness of this condition > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2003 Report Share Posted September 2, 2003 Hi I received your post on my email as I do all the posts, replied and expected it to come up on general forum here but it doesn't seem to have done so- perhaps it's because I sent reply back from my private email rather than reading yours on here then replying. Anyway, just to reassure you that although I suspect you and I may be the only two from the UK on here (I only found this excellent site recently too) flatback is definitely well recognised in the UK and I myself have been recently diagnosed with it and been given a programme of treatment. I have tried to email you about this but couldn't work out your email address - sent it to andrewpurcell8500@... but don't know if this is correct. If you don't get it (it's quite long and my arms are killing me now!) let me know and i'll send it again to your correct address).I'm in London if you want to chat -where are you? > Hi > I have just joined this group and thought I should say hello. > I am 41 and have had harringtons inserted in 1978 for a right sided > thoracic idiopthic scoliosis. Fusion extends to t3. > My heath has been excellent until aout 2 years ago, when the shpae of > my back began to change, and I started to get lower back and neck > pain with belief that the rib hump was worsening. > Two years on after lots of consultations, the answer from surgeons > is, > There is nothing wrong!, > What is flat back!, > You have had 20 good years what more do you want! > The x rays look the same, so there cannot be anything wrong! > > Although I cannot be sure that I have flat back, I do have changes in > the shape of my rib cage, lying down in painful, sitting in front of > a computer is painful and driving is becoming impossible. > So after much searching on the net, I find this site. Its very > interesting reading others experiences, although its clearly very > disturbing as well. > The UK is light years behind the US on this matter, and there seems a > fear here in accepting this condition due to some possibility of > legal action Is this the position in the US? > > I look forward to reading more on this site, and raising the > awareness of this condition > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2003 Report Share Posted September 3, 2003 Hi Thanks for your posting The problem in the uk i guess is compounded by the National Health Service. The systeme treats everyone or well on 95% of people in need. Private medical care is still a minor part of the health care system in the uk. i.e. we all get medical care on demand when required. This creates pressure points and problems in the form of waiting times to see a consultant. If youve had treatment in the past you tend to be overlooked especially if your a tad older. The focus is on young (which is fine) but at the expense of those who have already had treatment (harsh but true) Health rationing based on a limited government expenditure budget. This tends to be made worse when there are cases that could 'claim' due to negligence etc and therefore Drs run a tad scared of even accepting any liability as do the health authorities (local health trusts) The advise I get is believe nothing you read on the net, helpful that is not when the only information and acceptance of this condition appears to be on the net and in the us. Anyway rant rant rant.... thanks for the welcome and o look forward to reading more about what may be to come soon. > > Hi > > I have just joined this group and thought I should say hello. > > I am 41 and have had harringtons inserted in 1978 for a right sided > > thoracic idiopthic scoliosis. Fusion extends to t3. > > My heath has been excellent until aout 2 years ago, when the shpae > of > > my back began to change, and I started to get lower back and neck > > pain with belief that the rib hump was worsening. > > Two years on after lots of consultations, the answer from surgeons > > is, > > There is nothing wrong!, > > What is flat back!, > > You have had 20 good years what more do you want! > > The x rays look the same, so there cannot be anything wrong! > > > > Although I cannot be sure that I have flat back, I do have changes > in > > the shape of my rib cage, lying down in painful, sitting in front > of > > a computer is painful and driving is becoming impossible. > > So after much searching on the net, I find this site. Its very > > interesting reading others experiences, although its clearly very > > disturbing as well. > > The UK is light years behind the US on this matter, and there seems > a > > fear here in accepting this condition due to some possibility of > > legal action Is this the position in the US? > > > > I look forward to reading more on this site, and raising the > > awareness of this condition > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2003 Report Share Posted September 4, 2003 Dear , I too live in an EC country - Italy - which has national health. The deal here is that if it the patient can convince the health care bureaucrats that something can't be done here, the patient is permitted to get care outside the country. Thus I was able to get flatback revision done in France - it was no easy battle (6 months, 1 appeal, interviews, etc.), but they finally gave me the OK and off I went. And it was covered, for the most part, by the Italian National Health Care Service: I did have to pay a 6Euro/day " ticket " that the French have to pay, supposedly to cover one's meals, and also the ambulance fees, but otherwise I paid nothing - even got a private room " for free " because the doctor felt I needed one due to the bigtime surgery. Since you are so close to France, you might want to consider at least having a consultation with someone - I was operated on by Dr. Guillaumat at the Hopital San ph - he's retired, but his second in charge is now chief honcho at the Hopital Belle Isle in Metz. If you want to consider seeing him, let me know and I'll post phone numbers and addresses. I found the French approach very good: they are pioneers in scoliosis research, are the ones who invented the C-D instrumentation. Let me know if I can be of help and best wishes, from Italy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2003 Report Share Posted September 14, 2003 Hi, Peggy. Welcome From what I've read, most of your problems are pretty common for people with HARMS (flatback). Most of us have some disc degeneration (which you can have without flatback). I have chronic, widespread pain (not severe, fortunately) which I have long suspected is fibromyalgia. I have not had an official diagnosis, largely, I believe, because I have not gone to a doc who specializes in it and sought one. But I have spoken with HARMS patients who have been diagnosed with fibromyalgia. Most any spine specialist these days should be able to diagnose flatback (they haven't yet been educated to call it HARMS, a patient-generated acronym). They aren't always forthcoming with a flatback diagnosis, since it is essentially an admission that your " cure " was a failure. But if you are armed with knowledge, and perhaps some good literature describing the condition, and if you ask them point blanc, they will probably admit you have it (if you do.) As for treatment, the only real " fix " is revision surgery, though many of us put that off as long as we can (whether or not that's a wise idea). And you DO NOT want to go to just any spine surgeon, or even a scoliosis specialist for that. There are a number of scoliosis revision surgeons around the country (and world) who are experienced and qualified with this highly specialized surgery, and it is VERY important if you do need surgery to have it done by one of them. You've come to the right place for informed, compassionate discussion of this condition. Please browse the archives (if you haven't already), stay with us, and ask questions as desired. Sharon in Southern New Hampshire Congenital scoliosis w/ spina bifida and other vertebral anomalies 1971 Harrington rod fusion, T5-L4, flatback, L5-S1 degeneration, etc. Re: Hello > My name is Peggy and I am 37 years old. I had a Harrington rod fusion T-6 - L-4 when I was 12 years old. I have never heard of flatback syndrome but the symptoms caught my eye because I have most of them! I have been attributing it to the arthritis in my spine though. Please tell me if there is a way to get a proper diagnosis of it and what to do for it, if anything. I was diagnosed with degenerative disc disease 10 years ago in my neck and lower spine due to the stress over the years from the lack of movement in the rest of my spine. I have also been diagnosed with osteoporosis and fibromyalgia. I would love to hear from anyone else that has also developed these conditions. > > Peggy Greene > JPG Unlimited > Antiques & Collectibles > jpgreene@c... > > Simplify your life with Tupperware! Check out my site at http://my.tupperware.com/pgreene. When you place your order, please use my Consultant number 00577000619. Thanks! > > Join AllAdvantage.com and get paid to surf the Web! Please use my ID (HGD-969) when asked if someone referred you. Thanks! > http://www.alladvantage.com/go.asp?refid=HGD-969 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2003 Report Share Posted September 14, 2003 Welcome Peggy, I also have degenerative disc, fibromyalgia and arthritis. Part of this, I believe, is hereditary since I started to do genealogy of my family background and have made connections with all three. I thought my pains were due to arthritis and my doctor lead me to believe that it was stress and in my head. Since I found through this group and others, that this is not the case, and I've become more insistent that the doctors find or confirm the answers that I've discovered. As a result, my doctor has sent a referral to an ortho, that deals in revision surgury, and a neurologist. I'm still waiting for the appointments, but I'm on the three-year wait list for the ortho. I sometimes think that the doctors used to count on us being isolated so that they don't have to be as accountable, at least that is the way it seems to me. But the support here is great and we're not alone in this journey and the doctors are starting to recognize that we do have a problem, that's not in our heads. Llweyn in BC Re: Hello > My name is Peggy and I am 37 years old. I had a Harrington rod fusion T-6 - L-4 when I was 12 years old. I have never heard of flatback syndrome but the symptoms caught my eye because I have most of them! I have been attributing it to the arthritis in my spine though. Please tell me if there is a way to get a proper diagnosis of it and what to do for it, if anything. I was diagnosed with degenerative disc disease 10 years ago in my neck and lower spine due to the stress over the years from the lack of movement in the rest of my spine. I have also been diagnosed with osteoporosis and fibromyalgia. I would love to hear from anyone else that has also developed these conditions. > > Peggy Greene > JPG Unlimited > Antiques & Collectibles > jpgreene@c... > > Simplify your life with Tupperware! Check out my site at http://my.tupperware.com/pgreene. When you place your order, please use my Consultant number 00577000619. Thanks! > > Join AllAdvantage.com and get paid to surf the Web! Please use my ID (HGD-969) when asked if someone referred you. Thanks! > http://www.alladvantage.com/go.asp?refid=HGD-969 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2003 Report Share Posted September 14, 2003 Sharon, I don't think it's quite fair to say that our " cure was a failure " ...that suggestes that the surgeons who did our original Harrington rod surgeries were failures. Unfortunately, Harrington rods were the only instrumentation available to most of us in the 60's, 70's and even into the early 80's in some hospitals. It was not until cages, pedicle screws and segmental fusions became the " in " surgeries that is started becoming clear to Orthopedic surgeons across the country that distraction rods were not necessarily the best means by which to obtain corrections. I'm sure I'm not alone when I say I thank God there were scoliosis surgeries available to us " back then " !! And I certainly do not fault my parents or my surgeon for doing what was medically and surgically best for me in 1970. All the best, Beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2003 Report Share Posted September 14, 2003 Beth, This is what I have said many times in the past as well...our original docs did " cutting edge " treatments at the time. Medicine moves so fast, one day its cutting edge, the next day its almost quackery so I can't fault my physician at all. Because of him, I probably had many good productive years that I wouldn't have had had my scoliosis gone untreated. It is just unfortunate that these future problems were not understood back then. Banner, RN, CCM, RN-WCCM Nurse Case Manager First Rehabilitation Resources, Inc. 336-299-9995 (Phone) 336-299-3440 (Fax) Re: Re: Hello > Sharon, > I don't think it's quite fair to say that our " cure was a failure " ...that > suggestes that the surgeons who did our original Harrington rod surgeries were > failures. Unfortunately, Harrington rods were the only instrumentation > available to most of us in the 60's, 70's and even into the early 80's in some > hospitals. It was not until cages, pedicle screws and segmental fusions became > the " in " surgeries that is started becoming clear to Orthopedic surgeons > across the country that distraction rods were not necessarily the best means > by which to obtain corrections. I'm sure I'm not alone when I say I thank God > there were scoliosis surgeries available to us " back then " !! And I certainly > do not fault my parents or my surgeon for doing what was medically and > surgically best for me in 1970. > > All the best, > Beth > > > > > Support for scoliosis-surgery veterans with Harrington Rod Malalignment Syndrome. Not medical advice. Group does not control ads or endorse any advertised products. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2003 Report Share Posted September 14, 2003 I would like to add my 2cents in that I agree with Beth, I don't consider my surgery/treatment a failure. I believe the best possible treatment that was available at that time was offered to us. It was just unfortunate that the knowledge was not advanced enough to forsee the complications that this treatment developed later. Like in most areas of medicine, advancements and new discoveries are always being made. It would be nice if they remembered us older treatment survivors more often and offer us the additional support and treatment without us having to fight for it and continually proving our needs. Llweyn in BC Re: Re: Hello Sharon, I don't think it's quite fair to say that our " cure was a failure " ...that suggestes that the surgeons who did our original Harrington rod surgeries were failures. Unfortunately, Harrington rods were the only instrumentation available to most of us in the 60's, 70's and even into the early 80's in some hospitals. It was not until cages, pedicle screws and segmental fusions became the " in " surgeries that is started becoming clear to Orthopedic surgeons across the country that distraction rods were not necessarily the best means by which to obtain corrections. I'm sure I'm not alone when I say I thank God there were scoliosis surgeries available to us " back then " !! And I certainly do not fault my parents or my surgeon for doing what was medically and surgically best for me in 1970. All the best, Beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2003 Report Share Posted September 15, 2003 Neither do I, Beth. The term " failure " does not imply negligence or malicious intent. It simply means the procedure did not produce the intended effect. I stand by my usage. Re: Re: Hello Sharon, I don't think it's quite fair to say that our " cure was a failure " ...that suggestes that the surgeons who did our original Harrington rod surgeries were failures. Unfortunately, Harrington rods were the only instrumentation available to most of us in the 60's, 70's and even into the early 80's in some hospitals. It was not until cages, pedicle screws and segmental fusions became the " in " surgeries that is started becoming clear to Orthopedic surgeons across the country that distraction rods were not necessarily the best means by which to obtain corrections. I'm sure I'm not alone when I say I thank God there were scoliosis surgeries available to us " back then " !! And I certainly do not fault my parents or my surgeon for doing what was medically and surgically best for me in 1970. All the best, Beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2003 Report Share Posted September 15, 2003 Hey Everyone, No one agrees with Beth more than I about how very lucky we were to have Harrington Rods when we did. When I was 12 Yrs. old I came to Houston, after haveing seen 3 other Drs.,scared to death because I had something called scoliosis. Most of the Drs. I had seen didn't even know what is was. When I got here, we went into the Drs. office and I met the most wonderful Dr., someone who was kind, considerate of how I felt and most of all someone who truely believed in the work he was doing. That man was Dr. Harrington. Over the next 3 months before surgery, he took numerous calls from my parents and I and was never too busy to answer any questions we had and he waited patiently while we made the decision to have the surgery. I know that I went thru my life thinking that Dr. Harrington was my angel and I still believe that. So, today while I lay here in my recliner because I am in too much pain to sit, I know that I was lucky enough to have been operated on by the best and it's a shame that the problems that we later developed weren't brought to our attention by the drs. that came after him. Debbie >From: " denise banner " <dbanner@...> >Reply- >< > >Subject: Re: Re: Hello >Date: Sun, 14 Sep 2003 22:47:16 -0400 > >Beth, > >This is what I have said many times in the past as well...our original docs >did " cutting edge " treatments at the time. Medicine moves so fast, one day >its cutting edge, the next day its almost quackery so I can't fault my >physician at all. Because of him, I probably had many good productive years >that I wouldn't have had had my scoliosis gone untreated. It is just >unfortunate that these future problems were not understood back then. > > Banner, RN, CCM, RN-WCCM >Nurse Case Manager >First Rehabilitation Resources, Inc. >336-299-9995 (Phone) >336-299-3440 (Fax) > Re: Re: Hello > > > > Sharon, > > I don't think it's quite fair to say that our " cure was a >failure " ...that > > suggestes that the surgeons who did our original Harrington rod >surgeries >were > > failures. Unfortunately, Harrington rods were the only instrumentation > > available to most of us in the 60's, 70's and even into the early 80's >in >some > > hospitals. It was not until cages, pedicle screws and segmental fusions >became > > the " in " surgeries that is started becoming clear to Orthopedic surgeons > > across the country that distraction rods were not necessarily the best >means > > by which to obtain corrections. I'm sure I'm not alone when I say I >thank >God > > there were scoliosis surgeries available to us " back then " !! And I >certainly > > do not fault my parents or my surgeon for doing what was medically and > > surgically best for me in 1970. > > > > All the best, > > Beth > > > > > > > > > > Support for scoliosis-surgery veterans with Harrington Rod Malalignment >Syndrome. Not medical advice. Group does not control ads or endorse any >advertised products. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2003 Report Share Posted September 15, 2003 Debbie, How fortunate you were to have had such a marvelous and inovative surgeon!! The surgeon who did my Harrington rod in 1970, Dr. Evarts at the Cleveland Clinic Foundation Hospital had done some of his H-rod training under Dr. Harrinton...sure helps to know that the surgeon operating on you was trained by the best in the business!! I know as sure as I know my teenaged son will play loud music when he gets home from work tonight, that were it not for men like Dr. Harrington, Dr. Evarts and the many Orthopedic surgeons from the " good old days " , I would not be a Mom to that " boy who likes loud music " today!! When I see people my age and older who did not have access to the same medical/surgical care I did, bent over and in wheelchairs I can't help but think, " There but for the grace of God... " All the best, Beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2003 Report Share Posted September 15, 2003 Sharon, Again, I'm afraid I disagree with you somewhat. My parents and I were told that the " intended effect " was to " partially correct the curveture with the rod and then permenantly fuse the area with a bone graft from the iliac crest " . In my case, it did just that! The Harrington corrected a 80+ degree curve down to a less than 25 degree curve; and the bone graft site (T10 to L4) was successful as well. The only discrepency between my long term outcome and what we were told back then was that " Once the fusion is solid, she should have no more progression of the curve " ...whcih I didn't at least in that area. Who could have known then, what they know now...that distraction procedures and flattening of fused areas would cause problems down the road? As far as I'm concerned, my first was surgery was a complete success. All the best, Beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2003 Report Share Posted September 16, 2003 Whatever. If anyone actually recalls the context of my original comment, it was in reference to a perceived general unwillingness of surgeons to bring up the subject of flatback. Were I a scoliosis surgeon, I would indeeed consider the causing of flatback by the onetime standard of treatment to be a degree of failure on the part of my profession as a whole, perhaps something of an embarrassment. However, as a patient, I am in awe that such magnificent minds could not foresee this development, when I as a layperson figured it out before reading about it on the internet. (Though of course I didn't foresee it as a 13-year-old heading into surgery.) As a patient I am also thankful for the treatment I received and the years of relatively active, painfree living, perhaps more so as I received the surgery through the Shriners, at no cost to my parents. Of course I needed the fusion, as did many of us, but probably not all. My grandmother lived to the age of 86 with untreated scoliosis, and was pretty twisted up at the end, but no more crippled than many flatback patients. My father had a Harrington rod fusion at age 46, and at 76 has apparent flatback, diagnosed spinal stenosis, and finds walking difficult and painful, though i guess the fusion gave him a degree of relief for a few years. In general, it is better for the majority of severe scoliosis patients that some form of surgical treatment is available, but the profession has far to go. It will get there, literally, on our backs. Sharon in Southern New Hampshire Congenital scoliosis w/ spina bifida and other vertebral anomalies 1971 Harrington rod fusion, T5-L4, flatback, L5-S1 degeneration, etc. Re: Re: Hello Sharon, Again, I'm afraid I disagree with you somewhat. My parents and I were told that the " intended effect " was to " partially correct the curveture with the rod and then permenantly fuse the area with a bone graft from the iliac crest " . In my case, it did just that! The Harrington corrected a 80+ degree curve down to a less than 25 degree curve; and the bone graft site (T10 to L4) was successful as well. The only discrepency between my long term outcome and what we were told back then was that " Once the fusion is solid, she should have no more progression of the curve " ...whcih I didn't at least in that area. Who could have known then, what they know now...that distraction procedures and flattening of fused areas would cause problems down the road? As far as I'm concerned, my first was surgery was a complete success. All the best, Beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2003 Report Share Posted September 16, 2003 Hi Beth, Thanks for the kind words! I'm not sure why, but for some reason I have begun to take all of the criticizism of The Harrington Rods, Dr. Harrington or any other of the Drs. that performed the procedures he started, as a personal attack. I truly believe that a lot of who I am was determined because of what I,like you and all who have scoliosis, went thru when I had my surgery and how I learned to live the rest of my life with scoliosis. And I KNOW that we all made the best decision we could at the time, knowing what we knew then. The technology was new, inventive and it saved my life, of that I am sure. I now have flatback, so I know about all the pain, the depression and everything that we are now going thru but in medicine like everything else, we have to crawl before we can walk or run, and in those years the medical community still had a lot to learn and unfortunetly, we all have had to suffer because of it. So I am proud of the decision that my parents and I made and hope that all of the children and young adults who are having the surgery now are better off than we are, because they've learned some things from us. Beth, I hope this finds you well and I hope to talk to you again soon, Deb >From: bunce1117@... >Reply- > >Subject: Re: Re: Hello >Date: Mon, 15 Sep 2003 19:10:55 +0000 > >Debbie, > How fortunate you were to have had such a marvelous and inovative >surgeon!! >The surgeon who did my Harrington rod in 1970, Dr. Evarts at the >Cleveland Clinic Foundation Hospital had done some of his H-rod training >under >Dr. Harrinton...sure helps to know that the surgeon operating on you was >trained by the best in the business!! I know as sure as I know my teenaged >son >will play loud music when he gets home from work tonight, that were it not >for >men like Dr. Harrington, Dr. Evarts and the many Orthopedic surgeons from >the " good old days " , I would not be a Mom to that " boy who likes loud >music " >today!! When I see people my age and older who did not have access to the >same >medical/surgical care I did, bent over and in wheelchairs I can't help but >think, " There but for the grace of God... " > >All the best, >Beth > > _________________________________________________________________ Use custom emotions -- try MSN Messenger 6.0! http://www.msnmessenger-download.com/tracking/reach_emoticon Quote Link to comment Share on other sites More sharing options...
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