Guest guest Posted October 19, 1999 Report Share Posted October 19, 1999 Hi Jana, welcome to the list. I think one of the issues with steroids is long term use of the drug. It is a good sign that Robbie is growing albeit at a slow rate- but I believe that the streroids contribute to the slow growth. My son Elliot has been on Enbrel with no apparent success. He has systemic JRA Our Ped. Rheum. seems to think that it has been more successful for polyarticular JRA. He has one patient who is a " systemic " with excellent results- however he believes that she may really not be a systemic after all. What I really wanted to get at is- if your son was doing well on the methotrexate why not resume taking it? If he does well with it again, maybe try getting off of the steroids before the mtx. I believe the studies show that the long term effects of the steroids are worse than the long term effects of mtx. I hope that things will be on the upswing. Rena Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 1999 Report Share Posted October 19, 1999 Rena, Thank you for the welcome and the insight. Jana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2001 Report Share Posted August 14, 2001 Erabet, Welcome. I went untreated for most of my life. I had surgery at the age of 59 last year A/P T2-L5. It sounds like you need to go back to a scoliosis specialist for a total check-up. So many people with harrington rods have had to return to surgery. My rods are titanium with many hooks and four very long screws. ===== Jeanette __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2001 Report Share Posted August 14, 2001 In a message dated 8/14/01 4:01:22 PM Central Daylight Time, erzebet@... writes: > I joined this list > because I have only known one other person who has had this surgery > and problems, and I only knew her briefly. I need to know that others > are out there as I am quite terrified right now. > > Welcome to the group. It has been a good list to learn from. I had never met anyone else that had had any problems and only knew one other person that had even had surgery and that was in my early teens. I am 32 and had my rods placed when I was 12. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2001 Report Share Posted August 14, 2001 Hi there. Last time I tried to send a message to the group, it bounced back at me. I have recently been experiencing a disturbing amount of back pain which I know is related to my scoliosis. I had " corrective " surgery at age 14, a harrington rod fused in there among other things and have had virtually no trouble at all since coming out of my cast ten months later, other than the emotional upheaval it caused. Now I am 34 and terrified. My curve seems to be worsening though I don't see how that is possible and I hurt a lot. I have yet to go to the doctor but a visit is imminent. I joined this list because I have only known one other person who has had this surgery and problems, and I only knew her briefly. I need to know that others are out there as I am quite terrified right now. Nice to be welcomed. Erzebet -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2001 Report Share Posted August 14, 2001 Jeanette, I do intend to go to a doctor as soon as I possibly can. I have to talk to my primary doc as I don't even know where to begin. I have no idea what condition my back is in, I haven't had it checked since a year or so after my surgery, and I am not going to be very pleased if I am told that more surgery is necessary. That this was done to me in the first place makes me angry; I can't imagine what more of the same would be like. Erzebet >Erabet, > >Welcome. I went untreated for most of my life. I had >surgery at the age of 59 last year A/P T2-L5. It >sounds like you need to go back to a scoliosis >specialist for a total check-up. So many people with >harrington rods have had to return to surgery. My >rods are titanium with many hooks and four very long screws. > >===== >Jeanette -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2001 Report Share Posted August 15, 2001 Hi! Just wasn't so sure how to do that! Have received quite a few notes people have written lately, though. Had Harrington rod surgery in 1992 at 57, after it was discovered that my scoliosis had rapidly progressed after going untreated for many years. Had a rough time initially, but am doing quite well at this time. Have no one nearby who has anything even a little like the problems that go with the short stature, etc., so belonging to a group seems like a great thing to do. Thank you for the welcome! Carole ----Original Message Follows---- From: " Leger " <legerpj@...> Reply-Scoliosis Treatment Scoliosis Treatment Subject: Welcome to the group Date: Tue, 14 Aug 2001 20:05:42 -0000 There are a lot of new people out there recently. If you feel comfortable and want to introduce yourselves please do so. We can't help if we don't know you. Your friendly moderator. _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2001 Report Share Posted August 16, 2001 In a message dated Thu, 16 Aug 2001 8:52:36 AM Eastern Daylight Time, " Carole Myron " <carolemyron@...> writes: << Hi! Just wasn't so sure how to do that! Have received quite a few notes people have written lately, though. Had Harrington rod surgery in 1992 at 57, after it was discovered that my scoliosis had rapidly progressed after going untreated for many years. >> ++++++++++++++++ Hi Carole. Are you sure that the type of rods used in your surgery in 1992 were Harringtons?? People often use " Harrington " generically when talking about spinal instrumention. After the early/mid 1980's (about 1984), it was highly unusual that Harrington Rods were used seeing that better instrumentation types was developed at about that time. S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2001 Report Share Posted August 16, 2001 First off welcome to all and while I think I have intoduced myself I will do so ..My name is Jessie and I am mom to a great girl Sara aged 11 who has been diagnosed this past April with a 46 degree right thoracic curve. No surgery as of yet. She is about 5'2'' has about 9-12 months left of growth so we are doing with approval a wait and see approach til end of October when she will be imaged again. I am most curious about rod types. The rods they use now, titanium what makes that different than Harrington etc.. it was explained to me that whether steel or titanium the difference in trouble down the road is if the spine has fused properly. Jessie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2001 Report Share Posted August 16, 2001 Hi Jessie... I believe that all of the newer (non-Harrington rod) systems come in both stainless steel and titanium. The advantage to using titanium would be that spine imaging can be done by MRI if necessary. Although someone with stainless steels rods can have an MRI, it will not be of sufficient quality to read the image close to the rods. The advantages to stainless steel are that it's a lot less expensive and it's less brittle. There are quite a few spinal systems in use today. Usually, a surgeon uses one or two with which s/he's comfortable. Since they all use the same concept (bendable rods with segmental fixation), it shouldn't really make a difference for the consumer, which system is used. Hope that answers your question. Regards, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2001 Report Share Posted August 16, 2001 Hi , yes it does answer the question. Now what about the hooks vs screws issue...seems these docs we are meeting are pretty opinionated on that issue as well. Is it the same just what they are comfortable using. We have been told that hooks can slip and cause nerve damage compared to the screws...you are so informative , thanks in advance Jess --- Racine <lindaracine@...> wrote: > Hi Jessie... > > I believe that all of the newer (non-Harrington rod) systems come in > both stainless steel and titanium. The advantage to using titanium > would be that spine imaging can be done by MRI if necessary. Although > someone with stainless steels rods can have an MRI, it will not be of > sufficient quality to read the image close to the rods. The advantages > to stainless steel are that it's a lot less expensive and it's less brittle. > > There are quite a few spinal systems in use today. Usually, a surgeon > uses one or two with which s/he's comfortable. Since they all use the > same concept (bendable rods with segmental fixation), it shouldn't > really make a difference for the consumer, which system is used. > > Hope that answers your question. > > Regards, > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2001 Report Share Posted August 16, 2001 Hi Jess... I'm not actually certain about what goes into a surgeon's decision to use hooks v. screws. I see a lot of x-rays with both, so I would assume that some surgeons think that hooks are better in certain situations and screws are better in others. I have heard that screws are more secure than hooks. If you have a skilled surgeon, than I would go along with their opinion. There is a fairly vocal contingent of people who have been hurt by pedicle screws. If you hear from them, I suggest that you do research before discarding the option. Regards, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2001 Report Share Posted August 17, 2001 Hi , I was told that I was receiving Harrington rods and Lucque wires. Does that make sense? Carole ----Original Message Follows---- From: RSSSCOLIOSIS@... Reply-Scoliosis Treatment <Scoliosis Treatment > Subject: Re: Welcome to the group Date: Thu, 16 Aug 2001 10:18:39 EDT In a message dated Thu, 16 Aug 2001 8:52:36 AM Eastern Daylight Time, " Carole Myron " <carolemyron@...> writes: << Hi! Just wasn't so sure how to do that! Have received quite a few notes people have written lately, though. Had Harrington rod surgery in 1992 at 57, after it was discovered that my scoliosis had rapidly progressed after going untreated for many years. >> ++++++++++++++++ Hi Carole. Are you sure that the type of rods used in your surgery in 1992 were Harringtons?? People often use " Harrington " generically when talking about spinal instrumention. After the early/mid 1980's (about 1984), it was highly unusual that Harrington Rods were used seeing that better instrumentation types was developed at about that time. S. _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2001 Report Share Posted August 18, 2001 ========Original Message======== Subj: Re: Welcome to the group Date: 8/18/01 11:56:11 AM Eastern Daylight Time From: lindaracine@... Reply-to: Scoliosis Treatment Scoliosis Treatment BCC: RSS SCOLIOSIS Sent from the Internet Hi Carole... Yes, it's possible that you have Harrington rods with Luque wires. Would you mind sharing with us who your surgeon was? Regards, ++++++++++++++++ , after 1984, isn't any use of Harrington Rods a bit unusual due to their lack of segmentation, inability to be bent, and the risk of flatback? S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2001 Report Share Posted August 18, 2001 Hi Carole... Yes, it's possible that you have Harrington rods with Luque wires. Would you mind sharing with us who your surgeon was? Regards, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2001 Report Share Posted August 18, 2001 Hi ... I'm told that there are unusual, specific circumstances under which Harrington rods would be the best choice. Regards, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2001 Report Share Posted August 20, 2001 , My surgeon was Lipson, M.D., and it was done at Brigham and Women's Hospital in Boston. He has since moved to Beth Israel Hospital in Boston, where he is Chief of Ortho. My curvatures are very severe, and the surgery was done, not for correction, but more for stabilization. Hope this helps. Carole ----Original Message Follows---- From: RSSSCOLIOSIS@... Reply-Scoliosis Treatment Scoliosis Treatment Subject: Re: Welcome to the group Date: Sat, 18 Aug 2001 13:06:01 EDT ========Original Message======== Subj: Re: Welcome to the group Date: 8/18/01 11:56:11 AM Eastern Daylight Time From: lindaracine@... Reply-to: Scoliosis Treatment Scoliosis Treatment BCC: RSS SCOLIOSIS Sent from the Internet Hi Carole... Yes, it's possible that you have Harrington rods with Luque wires. Would you mind sharing with us who your surgeon was? Regards, ++++++++++++++++ , after 1984, isn't any use of Harrington Rods a bit unusual due to their lack of segmentation, inability to be bent, and the risk of flatback? S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2001 Report Share Posted August 20, 2001 Hi Carole... I don't know your surgeon, but believe it's entirely possible that he chose Harrington rods because they were the best choice in your situation. Regards, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2001 Report Share Posted August 21, 2001 Hi - Actually, that is what I had thought, as well. It was someone in the group who had questioned the use of these rods; - ?you? I do enjoy the notes from this group! Carole ----Original Message Follows---- From: Racine <lindaracine@...> Reply-Scoliosis Treatment Scoliosis Treatment Subject: Re: Welcome to the group Date: Mon, 20 Aug 2001 11:39:41 -0700 Hi Carole... I don't know your surgeon, but believe it's entirely possible that he chose Harrington rods because they were the best choice in your situation. Regards, _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2002 Report Share Posted September 11, 2002 Hi -thank you for the welcome. what kinds of things to you do? Perhaps we can share & exchange recipes depending on what you do!!! im looking forward to meeting nice people here too! So far everyone has been wonderful!!!! Hugs-Misty http://community.webtv.net/mpw98/doc http://community.webtv.net/mpw98/doc0 http://community.webtv.net/mpw98/ForeverYoursATouch Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2002 Report Share Posted September 12, 2002 Hi Misty, I've made some basic soaps for rebatching. Then I made some lavender soap using goat milk and shredded basic soap and it melted very nicely. I added lavender flowers and Lavender EO and also a few drops of red and blue Wilton's Oil Based Candy Colors (I read somewhere to try these) to make a lavender color. It turned out real nice looking and smelling great and it poured nicely into the molds as well. I was going to take them out of the molds after 24 hours but they felt too soft, so I waited another 24 hours and tried again. Still too soft. Waited still another 24 hours. Not as soft but I still couldn't take them out they were separating, so I put them in the freezer for about an hour or so. I waited a little while then tried taking them out, but it was a little difficult. I had to smooth them out with my fingers, but they were okay. Still smelled great and the color was good. I left them to dry but in a couple of days they started to look greenish. Horrors!! and still kinda soft. As the days went on they got greener! but not as soft. They still smell good but with a slight other smell....the goat milk, but I'm told that would disappear. Do you have any idea why they turned green?? I don't have central air in my house and I don't like to leave the window unit on when I go to work so it got hot in here when I took the soaps out to dry. Could the heat have affected the goat milk?? Thanks for any info on this problem, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2002 Report Share Posted September 12, 2002 Hi , Its very likely that the ph balance in your soap was totally incompatible with the colourings you used. There is a red that goes green, and one that stays red. Candy colours are usually oil based, and you would likely do better with water based colours. Well, Naturally http://www.wellnaturally.com At 10:58 AM 9/12/2002 -0500, you wrote: >Hi Misty, >I've made some basic soaps for rebatching. Then I made some lavender soap >using goat milk and shredded basic soap and it melted very nicely. I added >lavender flowers and Lavender EO and also a few drops of red and blue >Wilton's Oil Based Candy Colors (I read somewhere to try these) to make a >lavender color. It turned out real nice looking and smelling great and it >poured nicely into the molds as well. I was going to take them out of the >molds after 24 hours but they felt too soft, so I waited another 24 hours >and tried again. Still too soft. Waited still another 24 hours. Not as soft >but I still couldn't take them out they were separating, so I put them in >the freezer for about an hour or so. I waited a little while then tried >taking them out, but it was a little difficult. I had to smooth them out >with my fingers, but they were okay. Still smelled great and the color was >good. I left them to dry but in a couple of days they started to look >greenish. Horrors!! and still kinda soft. As the days went on they got >greener! but not as soft. They still smell good but with a slight other >smell....the goat milk, but I'm told that would disappear. Do you have any >idea why they turned green?? I don't have central air in my house and I >don't like to leave the window unit on when I go to work so it got hot in >here when I took the soaps out to dry. Could the heat have affected the goat >milk?? >Thanks for any info on this problem, > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2004 Report Share Posted January 7, 2004 Thank you for the warm welcome Sydney, The thing that has helped me to clear the picture of lyme disease is the study of the pathogenesis or how it causes disease. This recent work by done in Tulane indicates that the bacterial lipoproteins (BLPs) of borrelia are responsible for much of the pathogenesis of neuroborreliosis: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi? cmd=Retrieve & db=PubMed & list_uids=12938230 & dopt=Abstract So, IMO, we are dealing with a disease that is primarily caused by these fat-soluble toxins. This also helps clarify the clinical picture we see with this disease. This is also the reason why abx are only part of a comprehensive therapy. There are many facets we must address in a complete regimen and it includes ways to eliminate these depots of fat- soluble toxins. This one reason I joined this group. Detoxifying fat-soluble biotoxins is important for all of us. For example, glutathione's ability to detoxify appears to be an important factor with regards to therapy. > > > Hi , > > Welcome to the group. > > I have not posted in some time. I have been just lurking around and > reading about many of my fellow CFID'ers that have found they tested > > positive for Lyme. I have been feeling poorly since being out of > Kutapressin and no longer being able to get it. Now I have this URI > that I have had for almost two months. > > After reading your introduction I wanted to touch base with you about > Lyme. I was officially diagnosed with CFIDS in 1998 and > > started seeing Cheney in 2001. I have been sick since 1989. I went > from one doctor to another, you know the whole bit. My family all > thought I was crazy. > > After much research I thought I knew I had CFIDS and found a doctor > who could diagnose me but, I never thought of Lyme. Being from North > > Carolina no one ever mentioned it. All these years I had never been > tested for Lyme and had thought that after going through a million > different tests > > that Cheney had requested, that I had tested for Lyme Disease but, > had not. This past summer after a walk at Carolina Beach State > > Park, I was bitten by a small tick that made a fairly large red mark > on my stomach, not a bulls eye. > > I requested that my PCP do a Western Blot from Igenex. It came back > positive. I started seeing a LLMD and he believes I contracted > Borrelia back in > > 89. Later Lyme tests requested by my LLMD came back negative but, > with several > > markers for Lupus. Several times in the past I have tested positive > for EBV and HHV-6a. I must say I am confused about the whole thing. > > I wonder if I tested false positive for Lyme. So far oral antibiotics > are not making much of a dent. I have not done IV abx. > > I would like to know what you have tried and what is working for you. > I would appreciate any input you can give. > > I do believe ticks are becoming a very severe problem in my area if > not all over the US. I have a small yard in town and live with three > small terriers. > > I have never seen so many ticks in my life. I hate using chemicals > but, feel I must treat my yard and use Frontline Plus on my dogs. > > Thanks, > Sydney Christian Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2004 Report Share Posted November 10, 2004 well, here I am.. talking everyone's ears off.. and hoping to see some others here tonight too Larry Gullahorn wrote: I would like to take this moment to welcome new member davyrileysongs to the group. WE ALL WELCOME YOU AND LOOK FOR WARD TO HEARING FROM YOU IN THE NEAR FUTURE. ONCE AGAIN ,WELCOME 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 December 21, 2004 Report Share Posted December 21, 2004 Thank you for the welcome. At the moment I just want to enjoy the sunrise. I love the sunrise. Regards- Hal > I would like to take a moment to welcome the following to the group. > WELCOME TO :turboredcart and to vpohre. > We all look forward to hearing from you and to try and be of help to you in any way that we can. > We all share one thing on common. > We all suffer from chronic pain due in the neck or back[or both] due to injury or disease. > So,welcome to the group. Let us hear from you. > Until then, > MAY YOU ALL HAVE A BETTER DAY TOMORROW THAN YOU HAD TODAY. > TAKE CARE AND BE SAFE. > LARRY > > > > 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...
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