Guest guest Posted February 22, 2002 Report Share Posted February 22, 2002 That's a good idea, thanks. She has my respect; seeing what they have to deal with, I couldn't do her job. I have a school teacher friend who sprays Lysol all over everything (except the children). She doesn't get sick very often. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2002 Report Share Posted February 24, 2002 I actually had to go to the ER naval hospital with my youngest last week. There were so many really sick kids, and no place to seperate us who were not so terribly sick. Then the toys the kids play with, eeeeeeewwwww, I asked the lady when they were cleaned. She said " huh " , no wonder the kids get worse after going to the ER. I kept my child to me and did not let him touch ANYTHING. Dawn --- Maddviking@... wrote: > In a message dated 2/22/2002 9:02:16 AM Eastern > Standard Time, > shamrockgreen7@... writes: > > << Max.... > > I Can truly sympathize with the military medical > care > waiting lines !!! LOL > >> > It really makes me laugh when people want to go to a > national health care > system. If they only knew. Been there done that. > Max > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2002 Report Share Posted April 15, 2002 Hello Hazel, I only have a minute, but I can tell you right off that the Ezekiel bread recipe is NOT like the sprouted grain ezekiel bread--the grains MUST BE SPROUTED for you to be able to eat them ESPECIALLY for weight loss,and one slice a day will do ya--keep it in the freezer. --- Hazel <hroberts@...> wrote: > Hello All > > I'm new to this forum and am taking this chance to > introduce myself. My name is Hazel, married for 46 > years, we have 7 children, 13 grandchildren, one > great grandson and one dog. > > I was told about this way of eating by my > hairdresser > quite some time ago and I finally borrowed the book > from the library and am in the process of starting > to > eat this way. > > Like many of you I have tried many, many different > diets > in order to lose weight. Some were successful, > others > were not. I usually get fed up with all the > restrictions > and go back to eating the old way. One such diet > was the > Carbohydrate Addicts Lifespan Program. That one was > way > to restrictive for me. I'm sure I will have many > questions > along the way. I find a lot of my favorite foods > are on the > avoid list so I guess I will just have to adjust. > > One question comes to mind right now is, > > I am planning on making some Rye bread today or > tomorrow. > Doe's anyone out there have a good rye bread recipe > they > would care to share? (Either bread machine or > regular baking?) > For that matter any bread recipe using the > acceptable flours > would be appreciated. > > I found a couple of Ezekiel bread recipes at > www.allrecipes.com > Here is one of them. > > Ezekiel Bread > > * 2 1/2 cups wheat berries > 1 1/2 cups spelt flour > 1/2 cup barley > *? 1/2 cup millet > * 1/4 cup dry green lentils > 2 tablespoons dry Great Northern beans > * 2 tablespoons dry kidney beans > 2 tablespoons dried pinto beans > 4 cups warm water (110 degrees F/45 degrees C) > 1 cup honey > 1/2 cup olive oil > 2 (.25 ounce) packages active dry yeast > 2 tablespoons salt > > Directions > 1 Measure the water, honey, olive oil, and yeast > into a large bowl. Let sit > for 3 to 5 minutes. > 2 Stir all of the grains and beans together until > well mixed. Grind in a > flour mill. Add fresh milled flour and salt to the > yeast mixture; stir until > well mixed, about 10 minutes. The dough will be like > that of a batter bread. > Pour dough into two greased 9 x 5 inch loaf pans. > 3 Let rise in a warm place for about 1 hour, or > until dough has reached the > top of the pan. > 4 Bake at 350 degrees F (175 degrees C) for 45 to 50 > minutes, or until > loaves are golden brown. > > What concerns me is the items I have marked with an > asterisk* > Unless I am wrong these are on the avoid lists. > Should this > be a concern? > > > If someone cares to share email me direct as I am on > digest. > Plus if you do please put {Bread Recipe} in the > subject. > I get so much Spam and delete a lot of junk and I > don't want > to delete any recipes. > > Thanks Hazel > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2002 Report Share Posted April 19, 2002 Hi ... Electrical stimulation was found to be of absolutely no value and was dropped from treatment protocols. From the National Scoliosis Foundation's web site (http://www.scoliosis.org): Q: What about the electrically stimulated and observed patients? A: After five years, 70% of those using electrical stimulation or being observed had progressed 6 degrees or more. We found there is no difference whatsoever between electrical stimulation and observation. Electrical stimulation is now discarded as a method of treatment. Unless there is a problem with your spine, your Harrington rods will last the remainder of your life. Most people with spinal fusions have uneventful pregnancies. If you want to do some reading on the subject, you can start here: http://www.google.com/search?hl=en & q=%2Bscoliosis+%2Bpregnancy & btnG=Google+Searc\ h Regards, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2002 Report Share Posted April 19, 2002 , I cannot speak as an expert, just from my experience. I had Harrington rod surgery in 1974 and had it removed last year (with revision surgery). The rod itself was fine. I had two pregnancy with the Harrington rod in place and experienced no problems whatsoever. In fact, I had the least amount of back pain in my life while pregnant. Go figure. Donna _________________________________________________________________ Chat with friends online, try MSN Messenger: http://messenger.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2002 Report Share Posted September 8, 2002 Hello & welcome! Enjoy that fresh bread, but don't forget about the O diet. It's most effective when Starch free. Always balance starches with protein. Love http://www.foodforyourblood.com <http://www.foodforyourblood.com/> for your nutritional needs. New Member Hello Ross here I'm 47 live in Canada on a beef farm (perfectlol gotta love that beef) i am muddlin my way thru this and my first loaf of spelt bread is jut out of the oven i am looking forward to meeting and chattin u all for insperation friendship and support . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2002 Report Share Posted September 8, 2002 Hello ! I'm in Canada too, but unfortunately not on a beef farm! LOL! I'm also new to the list, but welcome anyway. ;-) (that's a wink) I haven't noticed any chat except on the list, but you can sometimes find me on AIM at CathquiltDoyle... same on MSN Messenger. Say hi if you catch me on there sometime! How can you reap if you don't sew? IM: CathquiltDoyle ICQ: 30807996 New Member Hello Ross here I'm 47 live in Canada on a beef farm (perfectlol gotta love that beef) i am muddlin my way thru this and my first loaf of spelt bread is jut out of the oven i am looking forward to meeting and chattin u all for insperation friendship and support . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2002 Report Share Posted September 24, 2002 Hi a... I haven't had to have revision surgery, but know people who have. If all that needs to be done is fusing a pseudarthrosis and reinstrumentation, the surgery probably won't be as difficult as the original surgery. Will you disclose the name of your original surgeon? I'm glad to hear that he admits when he's over his head. Please check to be sure that the revision surgeon is someone who is well qualified to do your surgery. If you'd like recommendations for good revision surgeons, let us know where you live. Here's an excerpt from a resource brochure that I created, about choosing the right surgeon: Be sure that your specialist is not a general orthopaedist. You can find a list of scoliosis specialists at: http://www.srs.org/htm/mbrlst/mbrlst.htm I'm sure that there are SRS members who are not good specialists, and that there are good specialists who are not SRS members, but it’s a good place to start. If possible, get a second opinion from another scoliosis specialist. Get the names and phone numbers of a half dozen patients who are undergoing, or who have undergone, similar treatment with your specialist. And, call those patients to get their opinions. Ask about your specialist’s education. Were they fellowship trained? Did they do an accredited spinal deformity fellowship? If surgery is necessary: - Ask how many similar surgeries the specialist typically performs in a year. - Ask if the other surgeon(s) and hospital staff that will be involved, have a lot of experience with similar patients. - Ask about your specialist’s outcome statistics in regard to serious complications. Regards, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2002 Report Share Posted September 24, 2002 a, I am 44 years old. Last year I underwent revision surgery. My first surgery was in 1974 with Harrington rod and 1976 for unstable fusion. I had my revision done at Northwestern Memorial in Chicago by a fabulous neurosurgeon. My original fusion was L4-S1, I believe, and now my fusion is T2-S1. He felt the need to do such extensive work because the point above the fusion is the weakest point, and I made it clear I would not be wanting further surgery, let's just get it done now. He used an posterior/anterior/posterior approach on two seperate days. The entire surgery was over 30 hours. He needed this approach partially because of my previous instrumentation. He removed 6 discs, replacing them with titanium cages filled with bone chips obtained from the removal of two of my ribs, for a more stable fusion. I was in the hospital 2 1/2 weeks, acute rehab another 2 weeks. It was a rough recovery, mostly due to leg weakness and pain, but I suffered no complications from the surgery. I now am able to enjoy life like I hadn't in the last 20 years. I work, keep house, and enjoy my kids. Good luck to you. Where do you live? Donna .. _________________________________________________________________ MSN Photos is the easiest way to share and print your photos: http://photos.msn.com/support/worldwide.aspx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2002 Report Share Posted September 24, 2002 Thank you so much for the information. The surgeon who did the original spinal fusion is Dr. Jerome Kolavo in Winfield, Illinois. He has referred me to Dr. DeWald at Rush in Chicago. I'm also going to get another opinion from Dr. Schafer at Northwestern. Dr. Kolavo feels that the staff at Rush has the most experience in revision surgeries. Dr. Kolavo also described the revision surgery as involving some sort of fusion to the pelvic region and he told me that it would be much more complicated than the original surgery and that scared me to death since my first surgeries were both 12 hours and one week apart. My recovery time was almost 6 months. I'm planning to write a list of questions for Dr. DeWald since the last time I saw him he didn't speak to me at all, but addressed his colleagues instead. So when I see him this time, I'm hoping he'll actually speak to me. I haven't had much luck finding orthopedic surgeons who have good reputations as surgeons and who also have good patient contact skills. I guess the most important part is the ability as a surgeon though so I'll put up with a less than personable doctor. At any rate, thank you for your words of encouragement, and the list of questions. I'll put them to use. a Re: New Member Hi a... I haven't had to have revision surgery, but know people who have. If all that needs to be done is fusing a pseudarthrosis and reinstrumentation, the surgery probably won't be as difficult as the original surgery. Will you disclose the name of your original surgeon? I'm glad to hear that he admits when he's over his head. Please check to be sure that the revision surgeon is someone who is well qualified to do your surgery. If you'd like recommendations for good revision surgeons, let us know where you live. Here's an excerpt from a resource brochure that I created, about choosing the right surgeon: Be sure that your specialist is not a general orthopaedist. You can find a list of scoliosis specialists at: http://www.srs.org/htm/mbrlst/mbrlst.htm <http://www.srs.org/htm/mbrlst/mbrlst.htm> I'm sure that there are SRS members who are not good specialists, and that there are good specialists who are not SRS members, but it's a good place to start. If possible, get a second opinion from another scoliosis specialist. Get the names and phone numbers of a half dozen patients who are undergoing, or who have undergone, similar treatment with your specialist. And, call those patients to get their opinions. Ask about your specialist's education. Were they fellowship trained? Did they do an accredited spinal deformity fellowship? If surgery is necessary: - Ask how many similar surgeries the specialist typically performs in a year. - Ask if the other surgeon(s) and hospital staff that will be involved, have a lot of experience with similar patients. - Ask about your specialist's outcome statistics in regard to serious complications. Regards, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2002 Report Share Posted September 24, 2002 That's so encouraging. I'm also from the Chicago area - Lisle in the western suburbs. My original surgeon has referred me to Dr. DeWald at Rush, although I would prefer to go to Northwestern. I had spoken with Dr. Schaefer before my previous surgery but opted to go with Dr. Kolavo at Central DuPage Hospital. That could have been a mistake - I'll never be sure. Thank you for the words of encouragement. Who was the doctor who performed your revision surgery, if you don't mind sharing? Thanks, a Re: New Member a, I am 44 years old. Last year I underwent revision surgery. My first surgery was in 1974 with Harrington rod and 1976 for unstable fusion. I had my revision done at Northwestern Memorial in Chicago by a fabulous neurosurgeon. My original fusion was L4-S1, I believe, and now my fusion is T2-S1. He felt the need to do such extensive work because the point above the fusion is the weakest point, and I made it clear I would not be wanting further surgery, let's just get it done now. He used an posterior/anterior/posterior approach on two seperate days. The entire surgery was over 30 hours. He needed this approach partially because of my previous instrumentation. He removed 6 discs, replacing them with titanium cages filled with bone chips obtained from the removal of two of my ribs, for a more stable fusion. I was in the hospital 2 1/2 weeks, acute rehab another 2 weeks. It was a rough recovery, mostly due to leg weakness and pain, but I suffered no complications from the surgery. I now am able to enjoy life like I hadn't in the last 20 years. I work, keep house, and enjoy my kids. Good luck to you. Where do you live? Donna .. _________________________________________________________________ MSN Photos is the easiest way to share and print your photos: http://photos.msn.com/support/worldwide.aspx <http://photos.msn.com/support/worldwide.aspx> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2002 Report Share Posted September 24, 2002 Moderator's note: Content of previous messages was removed. Re: New member Thanks for the greeting, Daisy. I only just started the MTX last week, so I haven't noticed any real side effects yet. I was a little nauseous last week. What are your side effects? I agree that it will be hard to continue taking it if there are side effects, because I want to feel the benefit is greater than the risk, not vice versa! y rheumatologist keeps telling me " You are young and healthy... " Seems humorous when I'm in agony, but we have to keep telling ourselves that, ha! -- In @y..., Daisy McClellan <daisiesbabies@y...> wrote: > > , > Welcome back. I am daisy, 42, Wife, Mom, Grandmom and full time career. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2002 Report Share Posted September 25, 2002 now my fusion is T2-S1. .....I now am able to enjoy life like I hadn't in the last 20 years. ---------------------------- Donna, Are you completely off of pain medication? How did the surgery affect your mobility and flexibility? Sanette -- __________________________________________________________ Sign-up for your own FREE Personalized E-mail at Mail.com http://www.mail.com/?sr=signup Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2002 Report Share Posted September 25, 2002 In a message dated 9/24/02 9:34:24 AM Central Daylight Time, kuntzp@... writes: > Has anyone else had to undergo revision surgery? If > so, can you tell me anything about your experience? I would appreciate > any > help you can give me. > > > I am in the same position as you are and am choosing the drug route, not surgery at this time. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2002 Report Share Posted September 26, 2002 Sanette, I am usually taking zero pain meds now. I do have problems at night, with shoulder and neck pain, and headaches I believe to be from my fusion. But, my back is pretty much pain free. There are days, either weather related or because I have done way too much, that I do take Vicodin, but those days are nothing like what I lived with before surgery. My mobility/flexibility - now there's another story. I get frustrated by my limitations, for instance, picking things off the floor - forget it. And that's a problem at work. At home, I use my toes, quite well. I have difficulty putting socks on, haven't even tried pantyhose yet, shaving my legs is miserable (too graffic?), Chairs are a problem for me, as are most car seats. I have a pillow behind me in the car, and seek how specific chairs at work. But my family reminds me that two years ago, I could not have gone to work, made dinner, cleaned up, and play with my kids all in the same day!! I'm learning to accept my limitations. Donna ... >__________________________________________________________ >Sign-up for your own FREE Personalized E-mail at Mail.com >http://www.mail.com/?sr=signup > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2002 Report Share Posted September 28, 2002 " He's been on Remicade for a little over a year which doesn't work any longer. " I too have the same problem - nothing seems to be working. My rheumatologist is referring me back to pain management and sports medicine because I'm limping so much. But I still work almost fulltime and will return to UCLA next year. I will not give up. Your caring attitude towards your husband must help him immensely. I've found that everyone just sort of left when I got sick. My parents don't want to talk about it, and they definitely don't log on to this site to get more information. My boyfriend just broke up with me because I was a " drain " - great. I agree that it's time for all suffering RS patients to band together and raise more funds gain more recognition. I " m sick of hearing of misdiagnoses and unnecessary surgeries. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2002 Report Share Posted September 28, 2002 In a message dated 9/27/02 1:42:23 PM Eastern Daylight Time, lbulifant@... writes: > What do we have to do to get this disease recognized and researched? What is the probabibility of one of them developing this? When can they be tested for this gene that carries the disease? Enbrel has worked wo! nders on people with RS and other forms of Spondyloathropathies. It is also extremely hard to get a hold of. Why is this? Does anybody know if the disease will ever run it's course and end it's attack on the body? I've heard that it can go into remission. What is really meant by that? Dear LB, we certainly understand your frustrations with coping with this disease. Your questions are the same questions that most of us have had. Over the last 5-10 years there has been real steps to understanding the complexities of the Spondyloathropathies and other autoimmune diseases. Up until the last few years, the only treatment for the spondys was NSAID, exercise to maintain flexibility, some DMARD (disease modifying) medications, like methotrexate and plaquenil. As you and your husband know, there is much interest in the newer anti-TNF drugs (like Remicade/Enbrel). Many in our group are trying these drugs with optimistic hopes. Others in our group, have a wait and see attitude. These drugs are still very new to us, therefore, some of us are watching with increasing interest. Since this drug is still in the clinical studies for our disease, I suppose some of us are waiting to see what the long term side effects are and some of us may have some questions as to the long term results (like if it will truly put someone into a remission/or whether you will have to remain on this drug indefinitely, to keep from symptoms. ) We all know that there is a large percentage of people that have improved while on this drug. It does give each and every one of us promise and hope. It is my opinion that the people that have gone on to try this drug have a severe form of the disease and have tried other drugs without any success. They, and their doctors, have weighed their symptoms with the benefits of trying the harsher drugs. This disease does not have a cure. They do not advise testing your children for the disease until of " if " they have symptoms. Even if they were to test positive for the HLA B27 antigen, it would not help to prevent the disease. There is no prevention for these diseases. The odds are low as to anyone who even tested HLA B27+ will get the disease. In the future, when they know more about the genetic makeup of this disease, there is hope that the disease will one day be prevented. This hour is not yet come. There was such a demand for Enbrel....after it first came out. It had less side effects than Remicade and was easier to give (by injection vs infusion), and the pharmaceutical company were not yet prepared for the demand of the drug. They are building other pharmaceutical buildings just to take care of the demand for the drug Enbrel. I believe the preparation in making the drug is very complex too and takes time. They say that they will open the new building early next year. Many are on waiting lists for this. They are starting a new clinical trial for Enbrel just for Ankylosing Spondylitis patients. I have heard that they have even better results than RA patients. I believe your husband sounds like he has advanced to this stage of spondy (fusing up and down spine, etc.). Does he have definite RS symptoms (prostatitis/ rashes/ mucous membrane ulcers/ arthritis of lower extremities (the triads of RS) or is the disease completely located in spine/hips/ribs, etc?) After a trip to Mexico, I also developed Typhoid Fever and it may have been a trigger for my Ankylosing Spondylitis? It has been documented that some people do have a complete remission from symptoms of RS. This means that there are absolutely no symptoms for many months or years. Most of us with chronic symptoms (over 6 months) have definite flares where the disease is worse than at other times. I do not think, that if the disease goes on to AS, that there are as many in remission. It usually is a disease for the duration of ones life. I have heard that when someone fuses completely, that there may be a period of less symptoms. I have not found this true of people that have real chronic symptoms (over many years). It may be helpful if you would see the NASS web site listed at the bottom of my post. It is loaded with much information....mostly about AS, but it does sound like your husband has these symptoms with his back. It shows him the exercises that might be helpful. Please keep us posted to his progress. We care and know of your frustrations in dealing with this chronic disease. Please don't be overly concerned about your children having the disease. There really isn't anything you can do and you needn't worry for something that hopefully may never happen. Best regards, Connie (granny) http://www.nass.co.uk/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2002 Report Share Posted September 28, 2002 Hi LB: Welcome to our group. I can relate to your concerns. My husband suffers from psoriatic arthritis. He's 40 years old. He's tried most of the meds mentioned here. He was on Remicade for a few months. He felt a lot of improvement at first, he even stopped taking pain medication. Then it seemed to be less effective. The doctor said it happens sometimes. He suggested to shorten the period between the infussions. My husband decided to stop taking the med. He doesn't see any doctor currently. He's taking Arcoxia. He doesn't feel he needs a doctor anymore. He takes whatever he feels works best. We live in Mexico, so he doesn't need a prescription to get whatever medicine he likes. I'm not particularly pleased with the situation. My husband took vioxx for several years, then decided to switch to Arcoxia. He doesn't want to try Enbrel. He says we don't know the long term effects of this new meds. He's able to function right now, so maybe he doesn't feel the need to try anything else. He hated the metho. I'm very sorry to hear your husband hasn't had any remission since you were married. We didn't find out about my husband disease until 7 years ago. By then we already had our two children. This disease is very isolating. I don't worry about what other people think anymore. It's very hard to make them understand what living with the disease is like. My husband doesn't look ill at all, except for a little limping as he walks. I can relate to your concerns about your children having the disease too. I wish there was a way to prevent it. Our children have been amazingly healthy, which makes me wonder about them having an overactive immune system. My husband's negative for the gene. But several members of his family suffered from different types of arthritis, including his father. I'm sure you'll find a lot of understanding and support here. This group has been a blessing for us. You'll be in my prayers. Please keep us posted. Sincerely, Ana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2002 Report Share Posted September 28, 2002 Granny said: > There was such a demand for Enbrel....after it first came out. It had less > side effects than Remicade and was easier to give (by injection vs infusion), > and the pharmaceutical company were not yet prepared for the demand of the > drug. They are building other pharmaceutical buildings just to take care of > the demand for the drug Enbrel. I believe the preparation in making the drug > is very complex too and takes time. Injection is easier than infusion??? Not for me. I hate being stuck and one stick in 8 weeks is easier for me than one daily. My dr. had said that Remmy didn't have any more side effects than enbrel. I don't know..I'm confused. I'm at the point of...I just don't know. I'm just sort of taking a step and another step...not knowing where I'm going. I thought remmy was going to be really helpful but if I'm going to have problems with my liver then....what next... > Liz ~~~ " Mistakes are the portals of discovery. " -- Joyce ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ EMAIL: juliette@... **ICQ 49746198** MSN & AIM LizKP1952** PERSONAL HOMEPAGE PAGE http://members.tripod.com/~LizK ADDult HOME PAGE: http://members.tripod.com/~LizK/addult.htm ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2002 Report Share Posted September 28, 2002 Hi Donna. Is good to hear that you are coping much better now post-surgery. A few things you mentioned were alarming for me as surgery is something i might have to consider within the next few years. When you say that your flexibility is severely limited to the point where you cannot pick things off up the floor or have problems shaving your legs and putting on socks, is this particular to only your type of surgery or does everyone who undergoes scoliosis surgery usually have such limitations? I am aware that surgery done on a lumbar curve can be more restricting. It is very disconcerting that such simple tasks such as those become major obstacles :-( -Roslyn _________________________________________________________________ MSN Photos is the easiest way to share and print your photos: http://photos.msn.com/support/worldwide.aspx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2002 Report Share Posted September 29, 2002 Roslyn, My prior surgery was a fusion L4-S1 and I experienced no limitations that were noticeable to me. This recent fusion is T2-S1 and my limitations are a result of that top fusion. Where unfused bodies curve forward in the thoracic region when reaching or stretching forward, mine doesn't allow me to do that. So to complete a reach to the floor from a squat position is not possible. To reach to my legs to shave, while unfused bodies curve that upper back, my upper back is rigid and my arms don't benefit from that forward extension. Does this make sense? I've had a difficult time explaining this to my husband, but I demonstrate on his back vs. mine, so now he sees and understands. It's harder to put into words. It is probably the most unsettling aspect of this surgery. HOWEVER, that said, my quality of life since the surgery is WAY better than before. I get a little upset with the surgeons who don't realize how a person's life will be effected. I would have liked a more informed explanation before surgery, so I wouldn't have been surprised after. I still would have had the surgery, because most days I felt life was not worth living, what with all the pain I was in. Now, my limitations are an annoyance to adjust to. I don't mean to frighten anyone facing this surgery, but I do want you to know what is ahead, from the perspective of a patient, not the surgeon who hasn't experienced it. .. >.. >_________________________________________________________________ >MSN Photos is the easiest way to share and print your photos: >http://photos.msn.com/support/worldwide.aspx > > _________________________________________________________________ Join the world’s largest e-mail service with MSN Hotmail. http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2002 Report Share Posted September 29, 2002 Hi Roslyn... The restriction of bending is only a temporary thing. Until fusion has started to take hold, movement of the joint could cause non-fusion. Many doctors put their patients into a post-op TLSO brace as a reminder not to bend or twist. In addition, at least for me, the surgery made me feel very stiff. I regained my flexibility over time. Because I have a long fusion, I'm less flexible than I used to be, but not as inflexible as I had imagined. Regards, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2002 Report Share Posted September 29, 2002 In a message dated 9/29/2002 12:45:59 PM Eastern Daylight Time, lindaracine@... writes: > Many doctors put their patients into a post-op TLSO brace as a reminder > not to bend or twist. , etc: As an addendum to what said, following my second surgery within six week of my first (fused T9 -- S1) due to loose lumbar hooks, a leg extension was added to my TLSO in order to further reduce my ability to bend or twist. I have heard of others having the leg extension. S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2002 Report Share Posted September 29, 2002 Hi Ana and Granny! Thank you both for your responses. Granny, yes my husband has an advanced form of AS or RS or whatever they want to call it tomorrow. He is fused in the neck area and can no longer stand up right. He is very active considering his condition. He is on that waiting list for the drug. He has a wonderful doctor at Duke that has been treating him for a little over a year. I actually looked up the drug Enbrel as he was suggesting it to my husband. Now we have to wait. My husband did get off of all the pain meds while on Remicade but his body decided to react badly to remmy after a year or so. He almost went into cardiac arrest during his July infusion. He was up to 1 infusion per month and they had upped the dose. I guess when your body is done tolerating a particular drug.. It's just done. I've introduced him to this site and he is going to become a member. It is interesting to see that everybody on this board seems to react differently to the different drugs. I have heard that the body tolerates Enbrel very well. I hope with all my heart that this new drug will work wonders and that it will work for a very long time if not for the duration of the RS. Ana, thank you as well for your input. It's nice to hear from others that are going through this as well. Where in Mexico are you? My dh and I were in Cancun when we both became very ill. This was when the disease began. We were young, quit our jobs and lived there for 4 months (until colera became a local concern). Aside from the illness. We had a GREAT time. That was 8 years ago. If anybody out there is on Enbrel already, please let us know how it is going. At this point my husband is not concerned about long term affects. If it can have him live a better life now, then that is what he wants. I will support him in any direction that he wants to go. Liz.. Good luck to you. It sounds like your liver is causing additional problems. I am very sorry about that. Is it because of the drugs from treatment? Gotta run.. Baby girl is getting fussy. LB > Hi LB: > Welcome to our group. > I can relate to your concerns. My husband suffers from psoriatic arthritis. > He's 40 years old. He's tried most of the meds mentioned here. He was on > Remicade for a few months. He felt a lot of improvement at first, he even > stopped taking pain medication. Then it seemed to be less effective. The > doctor said it happens sometimes. He suggested to shorten the period > between the infussions. My husband decided to stop taking the med. He > doesn't see any doctor currently. He's taking Arcoxia. He doesn't feel he > needs a doctor anymore. He takes whatever he feels works best. We live in > Mexico, so he doesn't need a prescription to get whatever medicine he likes. > I'm not particularly pleased with the situation. My husband took vioxx for > several years, then decided to switch to Arcoxia. He doesn't want to try > Enbrel. He says we don't know the long term effects of this new meds. He's > able to function right now, so maybe he doesn't feel the need to try > anything else. He hated the metho. > I'm very sorry to hear your husband hasn't had any remission since you were > married. We didn't find out about my husband disease until 7 years ago. By > then we already had our two children. > This disease is very isolating. I don't worry about what other people think > anymore. It's very hard to make them understand what living with the disease > is like. My husband doesn't look ill at all, except for a little limping as > he walks. > I can relate to your concerns about your children having the disease too. I > wish there was a way to prevent it. Our children have been amazingly > healthy, which makes me wonder about them having an overactive immune > system. My husband's negative for the gene. But several members of his > family suffered from different types of arthritis, including his father. > I'm sure you'll find a lot of understanding and support here. This group has > been a blessing for us. > You'll be in my prayers. Please keep us posted. > Sincerely, > Ana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2002 Report Share Posted September 30, 2002 Roslyn, I, too, am fused to the sacrum and have the same problems as regarding shaving and getting on my socks. I am almost 2 years post-op, so i don't think the situation is going to change. I can pick up most things off the floor, either by bending and swiping (not too advisable), or getting down on one knee as the physoitherapist advised. You do get used to the limitations but they can get you down psychologically. I hate the morning sock battle. Hope this doesn't scare you off the surgery - because if it's necessary, there's really not much choice. Are you sure you are to be fused to the sacrum? I had more mobility when I had just one vertebra free (had originally been fused to S5). Take care and good luck, from Italy Quote Link to comment Share on other sites More sharing options...
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