Guest guest Posted June 6, 2003 Report Share Posted June 6, 2003 First Welcome... Yes there are many websites that can help with your diet....http://users.bigpond.net.au/allergydietitian/fi/sal.html is a good place to start. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2003 Report Share Posted June 6, 2003 Gisele, I have Samter's Syndrome as well. My impression is that the avoidance of salicylates in the diet is not thought to be particularly important in the US. But there seems to be a greater interest in diet and avoidance of salicylates in Australia. The Royal Prince Alfred Hospital (RPAH) in Sydney has allergists who are interested in this approach. Dr Swain, whose paper (1985 in the Journal of the American Dietetic Association) measured the levels of salicylates in various foods, and is quoted at http://users.bigpond.net.au/allergydietitian/fi/sal.html is at RPAH. DR Swain has written Friendly Food: Avoiding Allergies, Additives and Problem Chemicals. Dr A R Swain et al of the Allergy Unit, Royal Prince Alfred Hospital (in Sydney, Australia). And the book can be ordered at http://www.dymocks.com.au/ or http://www.coop-bookshop.com.au/ . There is a woman, Sue Dengate, who has some sort of formal or informal relationship with RPAH and has written several books on food sensitivities and salicylates. Her website is at indexFedUp and she has links to informative sites as well. There also is the Feingold organization here in the US at www.feingold.org, which deals primarily with children with ADD, etc. I think, but whose diet info is thought by some to be helpful for the ASA triad; and there is Sharla Race's website Salicylate Sensitivity and handbook Salicylate Handbook. I am still learning about all of these. I am not aware of American doctors who have an interest in dietary thearpy for the ASA triad. There are also various drug approaches to the treatment of the ASA triad: various kinds of steroids, antileukotriene medications, Aspirin densensitization, etc. I think these are more popular in the US. I think your general health is important, and I congratulate you on your weight loss and looking into a dietary approach to the ASA triad. Good luck, Bob McGinnis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2003 Report Share Posted June 6, 2003 Thank you very much for the welcome and the URL! I am really trying to get this all figured out and this looks like a good place to start! Thanks! > First Welcome... > > Yes there are many websites that can help with your > diet....http://users.bigpond.net.au/allergydietitian/fi/sal.html is a good place to start. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2003 Report Share Posted June 7, 2003 Bob, thank you so much for all the links and the encouragement! My allergist did put me on Singulair and I am hoping that I can put together a sensible eating plan which will not undermine my weight loss, but does not aggravate my salicylate sensitivity. I am not willing to give up my weight loss goals. My Samter's symptoms are liveable and my life has improved 100-fold with the loss of 105 pounds. I am not at goal weight quite yet, but I am currently able to exercise vigorously and have become an endorphin junkie. ;-) I am trying to keep this all in perspective, but since this is all very new to me (1 week since diagnosis)it is still a climb. I truly appreciate all the support I have gotten on this board and the information I have accessed through all of you. Thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2003 Report Share Posted June 11, 2003 Lynne, Who are you going to see in Baltimore? That is where I had both of my revision procedures, one anterior and one posterior. All the best, Beth Re: introduction > > Welcome, Lynne, > It's amazing how many of us became nurses. I had my surgery w/ > Harrington rods in 69 at age 14. Had 4 children w/ no problems. > Have had > an active life & worked full-time in L & D until 2 yrs ago. Now am > PRN and > only do 8 hr shifts. > Like so many of us I've always lived with pain but things got worse > about 4 yrs ago. Started the cycle of seeing the PCP than the ortho, > then PT (and of course meds!). OK for about 2 yrs. Then another round > but w/ a different ortho. > I can relate to the frustration about the household things. I wake > withmajor plans all it takes is vacuuming 2 rooms and I'm > history! > But my husband is great -doesn't do much to help but doesn't say mean > things. Occasionally my daughter will come over & I pay her to do some > big things. > Sorry to ramble. Again welcome > Joyce RN (Atlanta) > Harrington rods 1969, removal 1971 > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2003 Report Share Posted June 12, 2003 Beth, I have an appointment with Dr. Kostuik at s Hopkins on the 25th of this month. Tomorrow I am seeing Dr. Baiochie in NYC. I read your email first thing this morning and was amazed how similar our experiences were. I was 18 and a sophomore in college when I had my fusion. I had student nurses post-op, along with blood transfusions, diarrhea from antibiotics AND my period. I too had the Riser cast with the bar between my legs. What an experience. I returned to school in a walking cast after months of enforced bedrest in that body cast. I can still remember Sister Immaculate, the Dean, hugged me (or my cast) and gave me the key to the elevator to attend classes. The funniest story I remember was having a spider come down from the ceiling on its web. My Mother was in the kitchen making breakfast. This was shortly after I returned home from the hospital and was not moving around in the bed too well with the body cast. Needless to say, the spider landed in the hole that was cut out for my stomach. To this day I am afraid of spiders. My psych teacher in nursing school told me I have a phallic problem and has nothing to do with spiders. Amazing. Yes, this adventure has changed the definition of modesty never to return. The body cast prohibited self care for just about every bodily function. And you are right…the surgeons had no clue of day to day life for us. Lynne Re: RE: introduction Lynne, Who are you going to see in Baltimore? That is where I had both of my revision procedures, one anterior and one posterior. All the best, Beth Re: introduction > > Welcome, Lynne, > It's amazing how many of us became nurses. I had my surgery w/ > Harrington rods in 69 at age 14. Had 4 children w/ no problems. > Have had > an active life & worked full-time in L & D until 2 yrs ago. Now am > PRN and > only do 8 hr shifts. > Like so many of us I've always lived with pain but things got worse > about 4 yrs ago. Started the cycle of seeing the PCP than the ortho, > then PT (and of course meds!). OK for about 2 yrs. Then another round > but w/ a different ortho. > I can relate to the frustration about the household things. I wake > withmajor plans all it takes is vacuuming 2 rooms and I'm > history! > But my husband is great -doesn't do much to help but doesn't say mean > things. Occasionally my daughter will come over & I pay her to do some > big things. > Sorry to ramble. Again welcome > Joyce RN (Atlanta) > Harrington rods 1969, removal 1971 > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2003 Report Share Posted June 12, 2003 A phallic problem? Let me guess . . . your psych. teacher was of the gender that normally comes equipped with a phallus? > Beth, > > I have an appointment with Dr. Kostuik at s Hopkins on the 25th > of this month. Tomorrow I am seeing Dr. Baiochie in NYC. > > I read your email first thing this morning and was amazed how similar > our experiences were. I was 18 and a sophomore in college when I had my > fusion. I had student nurses post-op, along with blood transfusions, > diarrhea from antibiotics AND my period. I too had the Riser cast with > the bar between my legs. What an experience. I returned to school in a > walking cast after months of enforced bedrest in that body cast. I can > still remember Sister Immaculate, the Dean, hugged me (or my cast) and > gave me the key to the elevator to attend classes. > > The funniest story I remember was having a spider come down from the > ceiling on its web. My Mother was in the kitchen making breakfast. > This was shortly after I returned home from the hospital and was not > moving around in the bed too well with the body cast. Needless to say, > the spider landed in the hole that was cut out for my stomach. To this > day I am afraid of spiders. My psych teacher in nursing school told me > I have a phallic problem and has nothing to do with spiders. Amazing. > > Yes, this adventure has changed the definition of modesty never to > return. The body cast prohibited self care for just about every bodily > function. And you are right.the surgeons had no clue of day to day life > for us. > > Lynne > > Re: RE: introduction > > Lynne, > Who are you going to see in Baltimore? That is where I had both of > my revision procedures, one anterior and one posterior. > > All the best, > Beth > > > > Re: introduction > > > > Welcome, Lynne, > > It's amazing how many of us became nurses. I had my surgery w/ > > Harrington rods in 69 at age 14. Had 4 children w/ no problems. > > Have had > > an active life & worked full-time in L & D until 2 yrs ago. Now am > > PRN and > > only do 8 hr shifts. > > Like so many of us I've always lived with pain but things got worse > > about 4 yrs ago. Started the cycle of seeing the PCP than the ortho, > > then PT (and of course meds!). OK for about 2 yrs. Then another round > > but w/ a different ortho. > > I can relate to the frustration about the household things. I wake > > withmajor plans all it takes is vacuuming 2 rooms and I'm > > history! > > But my husband is great -doesn't do much to help but doesn't say mean > > things. Occasionally my daughter will come over & I pay her to do > some > > big things. > > Sorry to ramble. Again welcome > > Joyce RN (Atlanta) > > Harrington rods 1969, removal 1971 > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2003 Report Share Posted June 12, 2003 You’d think so…but my professor was a woman! Re: RE: introduction > > Lynne, > Who are you going to see in Baltimore? That is where I had both of > my revision procedures, one anterior and one posterior. > > All the best, > Beth > > > > Re: introduction > > > > Welcome, Lynne, > > It's amazing how many of us became nurses. I had my surgery w/ > > Harrington rods in 69 at age 14. Had 4 children w/ no problems. > > Have had > > an active life & worked full-time in L & D until 2 yrs ago. Now am > > PRN and > > only do 8 hr shifts. > > Like so many of us I've always lived with pain but things got worse > > about 4 yrs ago. Started the cycle of seeing the PCP than the ortho, > > then PT (and of course meds!). OK for about 2 yrs. Then another round > > but w/ a different ortho. > > I can relate to the frustration about the household things. I wake > > withmajor plans all it takes is vacuuming 2 rooms and I'm > > history! > > But my husband is great -doesn't do much to help but doesn't say mean > > things. Occasionally my daughter will come over & I pay her to do > some > > big things. > > Sorry to ramble. Again welcome > > Joyce RN (Atlanta) > > Harrington rods 1969, removal 1971 > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2003 Report Share Posted June 13, 2003 Dear Bob/Gisele, This is such great information Bob! What I don't understand is if aspirin is made of salicylates which causes our problem why don't Doctors in the US think that following a salicylate free diet would help? What is so difficult about this concept? It makes perfect sense to me. And, it has worked for me. I have no polyps after years of following this diet. (Even though I had 2 prior major sinus surgeries for pollys) There is lots of yummy food you can have on it and items at fast food restaurants you can have. (In-N-Out Burgers is one of the fast food restaurants - yum!)You can change the fruits and vegetables that you eat to others and love those too. It is hard to change and emotional too since food is such an emotional issue but so many things many of us are going through are difficult too. Gisele, this isn't a plan of " if it tastes good don't eat it " . You can still have lots of yummy foods, just slowly change the brands and fruits and vegetables you eat. As time goes by you'll feel better which will encourage you to continue. You can still keep your weight off and lose more on this plan. The idea is if you love Yoplait yogurt you switch to Alta Dana or Stonyfield or another approved brand. If you love apples you switch to pears or bananas or pinapple. If you love oranges you switch to papaya. Then your body can heal and perhaps you can test these foods again later or do as I am doing and get cured of your allergies through NAET. The foods you avoid according to Feingold is artificial colors, artificial flavors, BHA, BHT, TBHQ and natural salicylates which are: almonds, apples, apricots, berries, cherries, chili powder, cider & cider vinegar, cloves, coffee, cucumber & pickles, currants, grapes & raisins, nectarines, oranges, paprika, peaches, peppers (bell & chili), plums & prunes, tangerines, tea, tomatoes, oil of wintergree, wine & wine vinegar. Feingold prints a booklet of approved food since if only a small % is in foods it doesn't have to be listed on the label. If you follow their food lists you can be sure the food you eat is safe. I have followed these foods lists myself for years. Eating out is difficult since the average person believes that almost everything is all natural but it is managable. Today for lunch I had steamed pasta and vegetables mixed together in a serving and it was very yummy and safe. The vegetables were squash, carrots and aspargus. Re: Introduction Gisele, I have Samter's Syndrome as well. My impression is that the avoidance of salicylates in the diet is not thought to be particularly important in the US. But there seems to be a greater interest in diet and avoidance of salicylates in Australia. The Royal Prince Alfred Hospital (RPAH) in Sydney has allergists who are interested in this approach. Dr Swain, whose paper (1985 in the Journal of the American Dietetic Association) measured the levels of salicylates in various foods, and is quoted at http://users.bigpond.net.au/allergydietitian/fi/sal.html is at RPAH. DR Swain has written Friendly Food: Avoiding Allergies, Additives and Problem Chemicals. Dr A R Swain et al of the Allergy Unit, Royal Prince Alfred Hospital (in Sydney, Australia). And the book can be ordered at <A HREF= " http://www.dymocks.com.au/ " >http://www.dymocks.com.au/</A> or <A HREF= " http://www.coop-bookshop.com.au/ " >http://www.coop-bookshop.com.au/ </A> . There is a woman, Sue Dengate, who has some sort of formal or informal relationship with RPAH and has written several books on food sensitivities and salicylates. Her website is at <A HREF= " http://www.fedupwithfoodadditives.info/ " >indexFedUp</A> and she has <A HREF= " http://www.fedupwithfoodadditives.info/information/links.htm " >link s</A> to informative sites as well. There also is the Feingold organization here in the US at www.feingold.org, which deals primarily with children with ADD, etc. I think, but whose diet info is thought by some to be helpful for the ASA triad; and there is Sharla Race's website <A HREF= " http://www.salicylate.co.uk/ " >Salicylate Sensitivity</A> and handbook <A HREF= " http://tigmor.com/food/bookshop/sali.htm " >Salicylate Handbook</A>. I am still learning about all of these. I am not aware of American doctors who have an interest in dietary thearpy for the ASA triad. There are also various drug approaches to the treatment of the ASA triad: various kinds of steroids, antileukotriene medications, Aspirin densensitization, etc. I think these are more popular in the US. I think your general health is important, and I congratulate you on your weight loss and looking into a dietary approach to the ASA triad. Good luck, Bob McGinnis << File: ATT00007.htm >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2003 Report Share Posted June 15, 2003 Hi, Reading the stories of the pets we had while in our casts made me have an other memory. My dad worked at a building in the downtown area & found a little baby squirrel that was lost. He brought it home for us kids to raise. About a year later I had my surgery. When I got to the phase where I could walk I had to be sure my sister didn't get the squirrel out of his cage when I was up. The crazy thing would get loose from her & climb me like a tree! Joyce Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2003 Report Share Posted November 21, 2003 I would be interested in hearing what treatment you're getting for your thyroid and adrenals. Did your nutritionist/pharmacist suggest the treatment or some doctor? Thanks, Don > My energy is also improved on the diet, but I am also getting other > treatment now for thyroid and adrenals. > > Rosemary Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2003 Report Share Posted November 22, 2003 Don, I started with a doctor who was covered by the insurance I had then, and he referred me to an endocrinologist, but I didn't make any progress with her. I subscribed to a Texas thyroid forum (a group) and found out that the best doctors for thyroid issues are usually internists, and that there aren't very many doctors who are really knowledgeable about thyroid problems and how to treat them. For example, the standard blood tests that most doctors use often don't show hypothyroidism even though it exists. Now I'm seeing an internist who has a holistic approach and uses conventional and alternative treatments; the nutritionist and others recommended him. I have multinodular goiter and hypothyroidism. The doctor has prescribed Armour Thyro (instead of Synthroid) to supply what my thyroid is not producing and cortisol to supply what my adrenal glands are not producing. He is into hormone balancing and has had some success with reversing hypothyroidism, so I am also using a custom hormone cream. I also follow the nutritionist's advice for adrenal and thyroid support using vitamins and minerals and various things to increase omega-3 fats (flaxseed, flax oil, EPA-DHA complex) and getting plenty of sleep; also walking, and I do some yoga too. The nutritionist I see is also a pharmacist and stays current on alternative and conventional remedies. > I would be interested in hearing what treatment you're getting for > your thyroid and adrenals. Did your nutritionist/pharmacist suggest > the treatment or some doctor? > > Thanks, > Don Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2003 Report Share Posted November 24, 2003 > I make my own goat's milk yogurt. Thanks for the welcome, Connie (and ). Connie, I'd love to have your goat milk yogurt recipe. Thanks! Rosemary Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2003 Report Share Posted November 25, 2003 Thanks for the recipe, Connie. I'll give it a try soon. It sounds great. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2003 Report Share Posted December 9, 2003 Hi , I'm so glad you decided to " jump in " . You have been through so much! You described my own back pain exquisitely! So, you had the bad fortune to see the young Dr. Arndt. Were you aware that his father is the " god " of dermatology in the Boston Area? He wrote a huge text on dermatology that is used by medical people. It would be great if you could bring your email for Dr. Rand to read! (Or, maybe, an outline of it?) You sounded so familiar (we do not know one another) when you spoke of the Fenway, Boston, and music, in addition, of course, to your back. I share your back problems, but I have a son close to your age who is a composer in Maine. I also have seen Dr. Rand and plan to see him again soon. I have had Harrington/Luque rod surgery (1992) T6-L5. You definitely have described my pain. I also have had the facet injections, which did help me quite a bit. I do hope that you are able to settle on a doctor for your revision, and that you have relief in the very near future. It is really great that you have joined us. Carole Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2003 Report Share Posted December 9, 2003 , I am so glad to have learned your story. I found it eloquent. While part of your life story involves fascinating and singular situations (exotic locales, artistic careers/avocations, etc.), you also describe a number of situations that many others in this group can relate to as well. I would like to post your story on the site (that is, in one of the sections set aside for archiving articles and items of interest, in addition to its appearance already in the " Messages " portion of the site). This would be, I believe, the first in a series of " case histories " we may want to preserve for posterity. Would you care to suggest an appropriate title? Or do you think we should just call these something like " 's Story, " " 's Story, " etc.? I think I favor interesting personal titles . . . In any event, please keep writing and letting us know how you're progressing. I will be especially interested in your experiences with Rand, who was my own revision surgeon. I would also be interested to know if you incorporate any more body work in your regimen. I have read several books recently on Ayurvedic approaches, without having tried any of them personally -- but I live on the edge of an Indian neighborhood with many relevant businesses and could probably afford to pursue this further (that is, orthopedically -- not financially!). I am looking into the possibility of some affordable Feldenkrais sessions as well, as these helped me enormously several years ago. It sounds as if the approach was similarly helpful to you. Best, RE: introduction Dear Feisty Friends, Let me introduce myself. My name is Ranvig. I actually joined this group a few months ago and I must confess I have gotten to know many of you without allowing you to get to know me. I have always been shy, but this time I have pushed timidity to the extreme. There is something about this almost invisible disability that is very difficult to face. Now that it has become more and more noticeable, both in appearance and in pain, I cannot avoid dealing with it any longer. Thanks to this group I have learned about Dr. Glazer and Dr. Rand. I have changed my primary care physician to easily line me up for a referral to Dr. Glazer. My first appointment is later today. I intend to get another opinion from Dr. Rand as well. Luckily, my new primary care physician at Boston's Fenway Community Health Center is also the attending physician who will visit me after surgery at Beth Israel Hospital. I have decided to have surgery as soon as is practical in terms of my doctor's schedule and my schedule. My two children will graduate from high school and eighth grade in June. Over the weeks I wrote the following history of my condition. I am sorry that it is so long. I promise my entries in the future will not take so much space. My father first noticed my scoliosis in the summer of 1973. By the time my x-rays were taken in November my curve was 42 degrees. At the time of the operation in February 1974 the curve was 48 degrees and projected to reach 65 degrees by summer. The insertion of the Harrington rod and spinal fusion from T10 to L4 reduced the curve to 5 degrees. I gained one and a half inches in height in one afternoon. At the time the operation was considered a success and it was predicted that the new position of the vertebrae would prevent arthritis from occurring later in my thirties. For nine months I wore a plaster body cast from the back of my skull and from just below my chin to below my hips. The weight of the cast rested on my hips and irritated the skin. I would often reach in the pockets of my pants to grab at the edge of the cast and lift it off of my hips. Fortunately, the skin never got infected. I saw my doctor, Dr. Keim of Columbia Presbyterian Hospital in Manhattan, only once after the cast was removed. Physical therapy was never prescribed. As early as 1977 muscle tightness and knots in my lower back and buttocks caused me to seek therapeutic massage from friends and professionals. In 1978 I began a series of ten monthly Rolfing sessions that did improve my posture and gave my buttocks and chest more definition. I still have the before and after photos to prove it. I was in generally good health with back pain only occasionally as triggered by activities like hours of dancing or moving furniture. I sought massage to feel good, but not because I was desperate for pain relief. Health consciousness did lead me to take lessons in the Technique from 1984-86. I felt elongated, expanded and open after each lesson. Then in the winter of 1986, six months after my son was born my wife herniated a disk in her spine. She was unable to work for five months and unable to lift my son at all. I carried my son in a backpack seat to daycare and then to visit my wife each day at the hospital. Twisting to fit him into the car seat behind the drivers seat in a small Sunbird was very difficult. He was still breastfeeding and we pumped and froze her milk to be used at other times of the day. I woke up in the middle of the night to prepare his bottle and change him. After a few weeks of this my back was in the worst condition it had ever been. My wife returned home with a hospital bed for her use and I continued to work and bring my son to daycare, but my back pain had become chronic and I missed some days of work too. I had trouble walking from the subway to our home just one block away. I collapsed on the sofa one evening and cried. I was only twenty-eight years old and this was not supposed to happen. My operation was supposed to have prevented the onset of back pain. As my son grew I needed to lift him less. I probably stopped carrying him sooner than most parents would. I had to resist the temptation to lift him. Even when he hugged my leg it was painful. I had pain in my lower back and down my left leg, but the orthopedist said that my x-rays indicated that there was no problem. Then I sought the help of a chiropractor who placed me face down on the table with blocks under my hips and used a tens unit to electronically stimulate the muscles that were in spasm. Relief from pain was real, but lasted only one or two days at most. An acupuncturist whose office was only one block away from my home, used a similar tens unit connected to needles stuck into my lower back. I was able to receive more frequent treatments at a more reasonable price. I could also walk home and not undo the treatment by sitting in a car or subway. This therapy was the most effective and I gradually had longer periods without pain. I set my computer keyboard and musical keyboard at a higher level, in order that I could alternate between standing and sitting on an adjustable high chair. I also resumed lessons in Technique. In 1989 my wife, four-year old son and I moved to India to study North Indian classical music. I did not drive a car for two years, and I bicycled often. I had very little back pain and the few times I did, my Indian friend who was a massage therapist gave me excellent Ayurvedic massage. After more than a decade of being a natural foods and homeopathic health nut, I finally gained respect for antibiotics which saved me and my family a number times from various types of amoebic dysentery. While in India we adopted my daughter. When I returned to the United States I needed to find full-time work, but I promised myself I would not take an office job that would require hours of sitting. I tried a variety of jobs and after two years I chose a new career in horticulture. I started with an entry-level position caring for indoor plants in offices, museums and hotels in Boston and Cambridge. I walked with my gardening tools approximately twelve miles a day. At first the exercise was great. I walked about twelve miles a day carrying my garden tools with me. But after two years the back pain was excruciating and I had to lie down in the park to rest my back a couple of times a day. It took longer and longer to get my work done. Each evening I would return home and collapse. I had no energy to maintain the house. Since my former wife is blind, maintaining the house and doing laundry were always my responsibility. I was also extremely depressed and started taking Prosaic in January 1994. I kept my job just long enough to keep our health insurance until my wife got an office job and her insurance took over. Although in my new x-rays I could see the squeezed discs at L4 and L5 and the vertebrae there touching, the orthopedic doctor I consulted found nothing wrong and prescribed only physical therapy. Later that year (1994) I separated from my wife. I tried to apply for SSI, but I did not qualify because I had not contributed enough to the system. I was told to apply for SSDI, but I was discouraged by the bureaucratic hassle of it all and felt that since I escaped the pressure of my marriage I might heal. For a few months I was unemployed and living on cash from my life insurance policy. At least I was able to relax in my new apartment. I rested my back three or four times a day and took warm baths and did some exercises my physical therapist showed me. I also came out as a gay man and the pressure of pretending to be straight finally ended. My former wife, my children, my mother and my sister were all very supportive and understanding. That fall, I also started my relationship with my current partner Carl. Carl had founded a non-profit organization years earlier and I started working for him in January of 1995 renovating the building owned by the organization. It was hard work but at least I could set my own schedule and rest when I needed to. I needed to rest less often, but I could also take a whole day off if my back was having a bad day. However, working for someone you love can also be stressful because you are so dependent on each other and you're in a sense working all the time. Nevertheless, my role in the organization expanded and I eventually became and still am the Administrative Director. Since 1993 I have had very few if any days free from pain. I have gotten accustomed to a dull aching pain and tightness in my lower back. The muscles are so knotted up, twisted and tight, it's as if my back has two or three nearly parallel backbones. I take Effexor now for depression, but often times my back pain is the cause of my irritability. One evening in an attempt to explain the level of pain I experience, I clamped onto the tendons of my own wrist with the fingers of my other hand and squeezed until the pain equaled the pain I experience in my back regularly, then I squeezed Carl's wrist with the same intensity for him to feel it. He cringed and fell to the ground. In 1996 my left leg started to fall asleep after walking only twenty minutes, but sometimes I could walk for hours and I would be fine. However, more and more my left leg would go numb when walking. I could walk quite a few more minutes after it fell asleep while I looked for a place to sit, but I would get quite anxious and irritable. Finally, in the fall of 1999 I hurt my back so badly I could hardly move. Getting in and out of the bathtub was a major effort. I also developed a burning sensation in the backside of my left thigh. I called my doctor who saw me in early 2000 and referred me to an orthopedist who had x-rays taken again and a CAT scan and determined that the two discs at L4 and L5 just below the Harrington Rod were bulging out toward the spine and causing the pain down my left leg. I had two epidural steroid injections in the spring of 2000 that helped me very much and allowed me to be a chaperone for my son's eighth grade camping trip. My leg no longer fell asleep when I walked. A few months later at a follow up appointment, I was diagnosed with flatback syndrome for the first time by Dr. Arndt. He acknowledged that since I have developed strong knee, calf and thigh muscles I am able to squat easily and that has helped me manage. I also have always been very slim. I currently weigh 150 pounds. As an adult I have always been between 123 and 165 pounds. I did not start to gain weight until I was thirty-nine years old. I am now forty-six. Dr. Arndt was the first orthopedist who understood my back problems. In August of 2000, he recommended revision surgery and fusion of the two vertebrae beneath the rod to the sacrum, but he also told me to hold off as long as possible because the technology was improving every day. I was able to function and another doctor prescribed vicodin, which I took only a couple times a week. In the fall of 2000, I started teaching music part time at my daughter's school. (I stopped last spring.) I always sat on a high stool or leaned against the desk while I taught. I could not stand and teach for more than ten minutes without pain distracting me from my students. Then in the spring of 2002, the pain in my back increased again and I also developed pain in the right side of my groin area. I decided I couldn't wait any longer. I tried to see Dr. Arndt again, but he had moved out of my HMO clinic. In order to see him I had to leave that clinic, transfer all my medical records since 1983 and start with a new primary care doctor, in the same HMO but different clinic, who could refer me to Dr. Arndt at Mt. Auburn Hospital, Cambridge MA. This frustrating process took many weeks. When I finally got an appointment with Dr. Arndt he ordered another set of x-rays and MRI, which I didn't think I could have with a rod in my back, but apparently it's o.k. to do that. A month later I saw him again and he was exhausted, he even fell asleep during the appointment. However, he woke up and was able to discuss my case and analyze the x-rays and MRI and recommend two operations on different days, one for revision and one for the lower fusion. He also prescribed two more epidural steroid injections, this time at New England Baptist Hospital. That helped again, but was very painful and I kicked the pain specialist in the process. A few weeks later I learned that the day before Dr. Arndt last saw me, he made the mistake of leaving the operating room to go to the bank to deposit his pay check. Yes, it was that Dr. Arndt!! I was devastated emotionally, because he was the only doctor I had ever met who understood my back pain and had a plan to take care of it. He made a stupid mistake when he left to deposit his check, and I don't know what the stresses were that caused him to do that, but he was a very nice and kind man who was sincere and took my symptoms seriously. He was never condescending. As the weeks and months passed I kept hoping that the licensing board would forgive him (his patient wasn't harmed by his mistake), but I'm sure the hospital could not take a chance on him again, because the publicity was too intense. About six months later in January of 2003, I had the other epidural steroid injection. Since the last one was so painful, I accepted the offer of an intra-venous dose of pain reliever and I was required to sign a form regarding it. The nurse assured me that my insurance would cover it and that the form was merely a formality. A month later I received a bill for $285, which I refused to pay. Later I received phone calls from the pain clinic demanding payment and then from various credit bureaus. They claimed that I should have called my health insurance company before the procedure to confirm that it was covered. I explained that I was already in my hospital gown sitting in an inner room of the clinic with the IV attached when the form was presented to me. How could I call my insurance company then? They just repeated their claim again, but I still refused to pay. Now they say my credit rating will be damaged! Each time the cortisone injections have helped, but I am afraid of having too many of these injections. I also had a terrible migraine headache for two days after the last injection. I was not allowed to take aspirin or ibuprofen for the headache. Finally, over the phone, the nurse recommended a strong cup of coffee. Vicodin helps the most. I take 2-3 per day on most days and sometimes skip a day or two. I do not have experience with other prescription pain relievers. However, if I am very active while on Vicodin the pain will come back much stronger than before and the vicodin will be less effective. Vicodin is best when I let it help me rest. I like that my mind stays clear when I use vicodin and I can work longer at the computer. I also will not fall asleep watching a video because I suppose the chronic pain is not tiring me. I also wake up without pain in the morning when I use vicodin. Alcohol dulls my mind before it dulls my pain. I would have to be drunk for alcohol to be effective. I have too many responsibilities and interests for alcohol to be way to manage pain. Ibuprofen products are pointless. When doctors recommend ibuprofen, I know immediately that they don't know how to care for someone with my symptoms. Naproxin might help, but I sometimes think I just talked myself into thinking it would be worse if I did not take naproxin. I have not taken naproxin in many, many months. One type of pain I have had to varying degrees since the mid-1980s. It feels like a burning fluid is being ejected out of my spine and into my upper left buttock. Since the late 1990s the same burning sensation sometimes occurs in the back of my left thigh as well. A similar pain occurs now on my right side of my lower back and through me to the right groin area. The latest pain to emerge in recent months is a crick in my neck and general soreness in my upper back, no matter where I am, sitting, lying down and even walking. The appearance of flatback is also increasing up my back. My left leg is sometimes falling asleep when I walk, but usually it just starts to go numb, disconcertingly I cannot feel the ground as well as if my feet are too small. A few times each day (six to ten times) my left big toe has excruciating nerve pain that is identical to the kind of pain I experienced during the next to last epidural steroid injection. This pain in my toe occurs in all positions including lying down in bed. When I sit at the table and eat breakfast or lunch and read the paper, I lean forward so much that my chest usually touches the table and my left arm resting on the table starts to fall asleep with feeling of pins and needles. Cooking dinner for the family has become a major effort and I now buy mostly partially prepared dinners that are ready in twenty minutes or less. Its not that costly and this way I have energy to eat and make conversation. (I like to cook and I used to prepare meals from scratch.) I know that my pain is not the worst pain experienced by many in this group. The amount of suffering endured by so many of you is overwhelming. I can endure a lot more pain, but the problem is that I cannot relate to people well and manage the pain at the same time. I am too irritable, too much of the time. I make special efforts to smile and engage socially, but I cannot sustain it and then I retreat to my room. My children are with me from Monday through Friday and they come to my room and sit on the edge of the bed for help with their homework. I cannot keep up with the basic cleaning of the house and many renovation projects are left unfinished. I am a composer who used to improvise at the piano for two to four hours at a time, but that was long ago. Thanks for reading my story and thank you for creating this site and participating as you do. Now, I am ready to ask about surgery. Support for scoliosis-surgery veterans with Harrington Rod Malalignment Syndrome. Not medical advice. 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Guest guest Posted December 9, 2003 Report Share Posted December 9, 2003 --- In , " poetryperson " <> > > Hi My name is and I am in the process of finding a revision surgeon also. I was wondering if you could post more info on the technique that you mentioned in your introduction. I am very interested in hearing what it consists of. OR if anyone else has any info it would greatly be appreciated. skk1145@... > --- > Outgoing mail is certified Virus Free. > Checked by AVG anti-virus system (http://www.grisoft.com). > Version: 6.0.548 / Virus Database: 341 - Release Date: 12/5/03 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2003 Report Share Posted December 15, 2003 Hi Lynn, Welcome to this group. I've been a member for some time and have found a lot of well-informed and compassionate people here. I had A/P fusion surgeries three years ago (at age 47). I am now fused L1 to S1. My DX was degenerative scoliosis. I'm very glad I had the surgeries as my lumbar curve would have continued to " collapse " . It was a long recovery, but the pain management was sufficient and the fused levels did completely fuse within a year. Racine, a member of this group, has a great web site http://home.comcast.net/~lsracine/ScoliosisLinks.htm Somewhere (not sure where) on this site is a good list of how to prepare for surgery, and how to prepare your home and lifestyle for post surgery. Maybe can lead us to this particular part of the site. If you have any questions, please ask, > Hi > > I'm Lynn. I'm male, 55 living in NW Arkansas. I'm seeing Dr. > Morrill at the University of Texas Southwest Medical Center in > Dallas. > > I've been suffering with a very severe and complex lumbar spine > problem. I have degenerative joint disease from L1 to S1 including > a bulging disc, spondylosis, scoliosis, lordosis, stenosis and two > nerve root impingments...Owie! > > I'd love to establish contact with anyone with the same or similar > problems. I'm facing two 6 hour surgery, an anterior approach > surgery one day to graft bone to the effected joing, and another 6 > hour surgery the next day from a posterier approach to tie it all > together with pins and screws. > > Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2003 Report Share Posted December 15, 2003 Hi and Lynn... Actually, my site is now http://www.scoliosislinks.com, and the list to help prepare for surgery can be found at: http://www.scoliosislinks.com/PreparingforSurgery.htm Regards, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2003 Report Share Posted December 16, 2003 Hi Lynn, Do you already have a date for the surgery? I am getting the impression that this is your first scoliosis surgery, am I right? You're right, all the knowledge in the world can not always cool out our fears (does help reduce them though, doesn't it?) One of the quotes I found during my pre-surgery research was: " Success depends less on the type of operation than on the skill and experience of the surgeon. " I got a lot of help from Peggy Huddleston's book and tape - " Prepare for Surgery, Heal Faster " She has a web site: healfaster.com They are very responsive and ship out quickly. Even if surgery is only weeks away, it can still be a help. I had to quit smoking prior to surgery for all the various reasons. I quit in late June and had my surgery in mid-September. So my anxiety knew no bounds at times. I used the tape several times a day and found in time that I could chill out. I too live alone, but a friend had me stay at her house for about a month after I left rehab. So my schedule was: Anterior surgery (appx 8 hours) on one day, wait one week in the hospital, then Posterior surgery (7 hours?), stay another week in the hospital, then moved to rehab for one week, and off to my friend's house. Home with one of my sisters staying one week, and then on my own! Had many friends getting my groceries, stopping by to visit/help out. I could not drive for the first 3 months post surgery. My surgeon wanted to make sure that the bone healed around the iliac screws and getting in and out of the car can really twist the pelvic. Well, that's probably more than enough info. for you. Let me know if you have any specific questions. -- In Scoliosis Treatment , Lynn Hawkins <i_anon1909@y...> wrote: > Thank you so very much for your response! I just need someone whom has walked a mile in my shoes to talk to. I'm having my surgery in Dallas at the University of Texas Medical Center in Dallas. I like my surgeon, he comes highly recommended from several sources including a very close personal friend in Dallas who is a radiologist. Myself, I'm a nurse and understand my situation much better than most. > > But that doesn't take away my fears and apprehension. I live in NW Arkansas, but my daughter and her family live in Ft. Worth and I have a few friends in the DFW area, so I won't be all alone. > > Thank you so much! > > Lyndol > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2004 Report Share Posted January 7, 2004 , once you start eating more, or maybe a LOTof veggies, you'll be able to cut down on all those carbs you're eating. I know, if I don't have at least a cup or 2 of veggies a day, I start craving carbs. Hang in there, you're doing great ! Emmi , one of the oldtimers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2004 Report Share Posted January 7, 2004 It sounds like you are doing a tremendous job. Do keep up the good work. We vets stay in there so we can be available to help new people. It also helps us not to slide too far off track. I would suggest, you try to pick up Ezekiel bread, or if you must have the 2 slices a day, make both of them spelt. If there is a special reason you are eating the slice of white bread, like you out and in a rush, you might try not eating it, or taking your own bread along. For the dessert, look for a semi-sweetened dark chocolate. I use Doves now, when I just can be satisfied without a sweet. If you are fixing white potatoes for the family, you can always fix a sweet potato in the same pan, if you boil them whole. The nutrition is about the same and sweet potatoes are not an avoid. If you get hungry for something where it call for wheat, and you can fix your own, you might see if spelt flour would help. Also for gravy or coating mix, I usually use brown rice flour for gravy or a thickener. That might be once every several weeks. Those are the main things I see where you can improve. Of course it isn't always as easy as it sounds. Just keep on keeping on. If the pain continues, I'd find out what your secretor status is. Someone mentioned when they got their test back they found out they were Nonnies (non-secretors) and once they made those changes, they did a whole lot better. Just wait until you get this part down first. introduction My overall goal was to eliminate sugar, dairy, and wheat from my diet as much as possible. It has certainly been a process. I choose to eat processed sugar (non-dairy) once every ten days or so (a cookie or piece of pie, or > chocolate, etc). That's huge success for me. Dairy has been much > easier to eliminate than I thought given that I used to consume > large amounts of milk, loved sour cream, and ice cream was my > dessert of choice. Once a week I have an avoid cheese, once a > neutral, that's it with dairy. Wheat products are tougher for me. > I'd say I average eating a piece of wheat bread or spelt bread per > day, and frequently have 3 portions of rice a week, and one portion > of pasta. Occasionally I'll have a potato. This is a significant > effort for me, and an amazing decrease from my previous habits. > Aside from the grains, I'm doing great at other avoids, I > accidentally eat one once in a while (olives, or salad dressing with > vinegar, or pickle relish). I eat beneficials every day. My > challenge is now to start eating more green leafy vegetables, and in > the quantities I need to. Over time, I hope to tighten the reigns on > the carbs. I know that if I do this too fast, I'll quit! I don't > sweat the small stuff yet about portions and ratios, etc. > > Even after these months of what I consider to be amazing improvement > in my nutrition, my inflammation and pain is still with me. It took > me years to create this body and I know I need patience to re-build > it. I feel so much better in other ways, though, and now weigh 220. > (I was at 250 by one month after the birth of my baby and have lost > the next thirty on the ER diet.) > > Maybe the ratios or portions or little details or simply non-100% > compliance with no wheat is the problem here. I don't know. It > feels like I don't have enough of a solid foundation yet to even > listen to my body to find out what works and doesn't for it.I'm a > little bit more on automatic with the " shoulds and oughts " of the > diet, and following it the best I can day by day. > > I have a lot of muscle..was an athlete through college and always > have done some exercise until the past few years. And now I'm in > too much pain to exercise. > > Not surprisingly, I've created a thyroid disorder for myself. > > This group is so important to me right now.the emails help me to > keep engaging with my goal to follow this lifestyle. The details > about what people eat for meals and snacks has been especially > helpful.hels to separate fantasy from reality. If there's anything > anyone picks up in my story in terms of tips for me, I'd welcome > them. Thanks! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2004 Report Share Posted January 7, 2004 In a message dated 1/7/2004 12:48:26 PM Eastern Standard Time, meand@... writes: > Emmi , > one of the oldtimers > We're not getting older, everybody else is. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2004 Report Share Posted January 7, 2004 Hi - Congrats on your success so far! Remember - one feels much worse when detoxing. But what can one do? I'll get to the diet part (which you will not enjoy because I only know ONE way to get healthy) in a minute. Supplements to help you eliminate unwanted poisonous toxins from your body as well as rebuilding/balancing/boosting your system as follows: IMM CALM DEFLECT POLYFLORA STOMACH EASE DIET!!!!!! 100oz of water a day (8oz every hour is an easy way to consume that amount) - helps flushing out toxins Let me tell you this: If you were to eat properly for your type then there is no transition. Your body would be getting all it needs so craving will not come. But eating the right diet is an art form. So if you are not 100% then it will be a pretty hard " transition " . As a matter of fact, that is the main reason why many people slowly give up on themselves. They love the diet and the theory behind it but they stop making progress. Anyways. I don't know what amounts you are consuming presently, but this is what I would suggest right now " out of the box " Eat simple so your body will break down everything more efficiently, thereby speeding up your metabolism so you will burn fat faster. In your case only HB foods should be consumed! This is very important. Unlike emotional healing, the physical healing can happen at a much faster paste. Also if you are working with holistic " healers " who are most likely shoving supplements down your throat supplements work best when poison is not consumed. Ok! Try consuming HB fruits only first thing in the morning since that is when the body is doing its cleansing (first 4 hours). 20 min or so later eat your first meal, which should be 4oz to 6 oz of HB/Neutral (only exception) animal protein of your choice. To this add 1 to 2 tablespoon of high quality olive oil. Now the most important part of any meal: HB Organic green leafy veggies of your choice, or a salad (always sprinkle dulse flakes or kelp powder on it) about a fistful in quantity. Don't have to OD but eat a good amount. Steam your veggies for a few minutes only to preserve all those vits/minerals/anti-oxidants/enzemes! What will probably happen is that is 4 hours (hopefully in 3 hours) or so you will get hungry again, which is what we want to accomplish. You would eat several of these servings throughout the day. You can add some walnuts, flax seeds to your salad/veggies to spice them up. Make your meals tasty. For salad dressing use olive oil, lemon juice & garlic. All foods should be organic. Drink warm herbal teas only with your meals if thirsty like the O tea or green tea or any other HB tea. No fruit juice. No starches, no junk. Let's see what you will do. Love ABO Specifics Inc. - www.foodforyourblood.com introduction My name is . I am 37 years old. I have deluded myself for many years feeling that I was a " healthy fat person " in an attempt to be happier and more accepting of myself. That did help me to be more mentally and emotionally healthy! I've done enormous amounts of work on my mental emotional and spiritual bodies and now I'm working on my physical health. Last year after a brilliantly wonderful pregnancy, even at 295 pounds, I gave birth to a healthy daughter. I have been breastfeeding her for nine months. There is now a sense that my body is competing for nutrients given the extra burden to produce breastmilk. So, it's all caught up with me and I am in the midst of a health crisis that feels awful, but which I know is great for me. I have finally been pushed to take responsibility for my body and the nutrition I choose to put into it. I am focused on health not weight, for the first time. For the past four months, the inflammation in every big or small joint throughout my body has been so severe that I often cannot walk, pick up a magazine, etc. It is not arthritis, but more of a blood issue. I am working with holistic, alternative practitioners who are helping me to build back my body from the inside out with supplements, energetic flow, etc. I use my Western doctor for pain relief when I simply can't function or take care of my daughter. I started on the ERFYT lifestyle two and a half months ago. I am 0+ and don't know my secretor status. My overall goal was to eliminate sugar, dairy, and wheat from my diet as much as possible. It has certainly been a process. I choose to eat processed sugar (non- dairy) once every ten days or so (a cookie or piece of pie, or chocolate, etc). That's huge success for me. Dairy has been much easier to eliminate than I thought given that I used to consume large amounts of milk, loved sour cream, and ice cream was my dessert of choice. Once a week I have an avoid cheese, once a neutral, that's it with dairy. Wheat products are tougher for me. I'd say I average eating a piece of wheat bread or spelt bread per day, and frequently have 3 portions of rice a week, and one portion of pasta. Occasionally I'll have a potato. This is a significant effort for me, and an amazing decrease from my previous habits. Aside from the grains, I'm doing great at other avoids, I accidentally eat one once in a while (olives, or salad dressing with vinegar, or pickle relish). I eat beneficials every day. My challenge is now to start eating more green leafy vegetables, and in the quantities I need to. Over time, I hope to tighten the reigns on the carbs. I know that if I do this too fast, I'll quit! I don't sweat the small stuff yet about portions and ratios, etc. Even after these months of what I consider to be amazing improvement in my nutrition, my inflammation and pain is still with me. It took me years to create this body and I know I need patience to re-build it. I feel so much better in other ways, though, and now weigh 220. (I was at 250 by one month after the birth of my baby and have lost the next thirty on the ER diet.) Maybe the ratios or portions or little details or simply non-100% compliance with no wheat is the problem here. I don't know. It feels like I don't have enough of a solid foundation yet to even listen to my body to find out what works and doesn't for it.I'm a little bit more on automatic with the " shoulds and oughts " of the diet, and following it the best I can day by day. I have a lot of muscle..was an athlete through college and always have done some exercise until the past few years. And now I'm in too much pain to exercise. Not surprisingly, I've created a thyroid disorder for myself. This group is so important to me right now.the emails help me to keep engaging with my goal to follow this lifestyle. The details about what people eat for meals and snacks has been especially helpful.hels to separate fantasy from reality. If there's anything anyone picks up in my story in terms of tips for me, I'd welcome them. Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2004 Report Share Posted January 7, 2004 You're so right, LOL > We're not getting older, everybody else is. Quote Link to comment Share on other sites More sharing options...
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