Guest guest Posted November 4, 2000 Report Share Posted November 4, 2000 RE: Mount Everest Altitude I don't know how to reply to an egroup, so I just pressed reply. I live in WI and suddenly in August got very SOB and started fainting. Well normally we thought, it is my POTS and it is time to change the dosage. We cut it down twice. Then I had the tilt table which after 11 years was surprisingly negative. I received a Vasoconstrictor by the cardiologist to bring up my BP. Well all it did was swell me up w/ 35 # of fluid. Anyway since August I am still on Oxygen 2 1/2 liters. At this I am about 92%. When I stand up it just keeps dropping: 80's.......70's...then we put it back on. So far nobody knows what to do. I need to be on 2 1/2 Liters of O2 24 hours a day. Anyone have any ideas?? Thanks, Annette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2001 Report Share Posted January 7, 2001 Hi , the only thing I can offer is my personal experience regarding leave from work. When I was my sickest I was off work about 2 months and I had short term disability which paid me 66% of my base rate. It was very helpful. I returned to work part time for a couple of months before going back to full time eventually. I also have long term disability. Have you taken out any STD or LTD with your company? It would behoove you to check into this. We also have family medical leave at my work that allows you to be off 12 weeks without pay and guaranteed a job back that is similar to the one you left. Hope this helps alittle. I know several others members here have actually filed disability throught SSI, etc. Hopefully they will share their stories. Good luck, in LA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2001 Report Share Posted January 8, 2001 Hi , I dont know where you live, but in CA you get 1 year disability. When My year was up, over 5 years ago, I applied for SSDI I was 27 at the time. They look for a variety of things. I do not know what illnesses are on thier list, but I have lupus, and at the time the added diagnosis, of deppression. Since I was so young, they took it more on the deppression. Saying that, it would be a good idea for you to have your primary illness, and also see if your doctor believes or will indicate deppression also. Most of the time you do get turned down the first time, and approved in an appeal. That may suck, but they will pay you back SSDI. If you have any other questions just email me. Christi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2001 Report Share Posted September 28, 2001 I don't wish to unsubscribe, I just have a question. Is it safe to drink alcholic beverages and take hydrogen peroxide, at the same time? OxyPLUS is an unmoderated e-ring dealing with oxidative therapies, and other alternative self-help subjects. THERE IS NO MEDICAL ADVICE HERE! This list is the 1st Amendment in action. The things you will find here are for information and research purposes only. We are people sharing information we believe in. If you act on ideas found here, you do so at your own risk. Self-help requires intelligence, common sense, and the ability to take responsibility for your own actions. By joining the list you agree to hold yourself FULLY responsible FOR yourself. Do not use any ideas found here without consulting a medical professional, unless you are a researcher or health care provider. You can unsubscribe via e-mail by sending A NEW e-mail to the following address - NOT TO THE OXYPLUS LIST! - DO NOT USE REPLY BUTTON & DO NOT PUT THIS IN THE SUBJECT LINE or BODY of the message! : oxyplus-unsubscribeegroups oxyplus-normalonelist - switch your subscription to normal mode. ------------------------------------------------------------------------ There are 25 messages in this issue. Topics in this digest: 1. Re: pH From: ejohns9525@... 2. Re: Re:Credentials? From: ERCCoach@... 3. Hulda From: bubba 4. Re: venous pH From: LP 5. Credentials From: " Gail Naranjo " 6. Re: microhydrin/Willard Water From: " (GR) " 7. WILLARD WATER DISTRIBUTORS From: BILL D 8. Re: Hulda From: " foxter " 9. Re: skin cancer From: harpreet gulati 10. Re: Digest Number 1363 From: " Duncan Crow " 11. Re: Hulda From: Wayne Fugitt 12. Re: Hulda From: " Fred Walter " 13. Re: BUSTED: Credentials From: " Jim Lambert " 14. Re: venous pH From: " Jim Lambert " 15. Re: Re: venous pH From: LP 16. Re: Re: venous pH From: harpreet gulati 17. Re: WILLARD WATER DISTRIBUTORS From: Christelti@... 18. Re: WILLARD WATER DISTRIBUTORS From: " Nina Silver " 19. saliva hormone testing From: " Dave " 20. Re: iridology reading with AV From: " Gail Naranjo " 21. Re: iridology reading with AV From: luckower@... 22. Re: saliva hormone testing From: harpreet gulati 23. Re: Re: Hulda From: bubba 24. Re: gall/liver stones From: bubba 25. Alternative Medicine From: molecularrock@... ________________________________________________________________________ ________________________________________________________________________ Message: 1 Date: Sun, 23 Sep 2001 08:23:14 EDT From: ejohns9525@... Subject: Re: pH In a message dated 09/22/2001 9:30:10 PM Central Daylight Time, gwc@... writes: > I've started to monitor my saliva and urine pH first thing in the morning. > So far my saliva is 5.5 and the urine is 6. > > What are the optimum values for these? Are my values considered > dangerously low? > > Greg > > ______________ According to Dr. Carey Reams, each should be 6.40. Edith Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2001 Report Share Posted September 28, 2001 I don't wish to unsubscribe, I just have a question. Is it safe to drink alcholic beverages and take hydrogen peroxide, at the same time? OxyPLUS is an unmoderated e-ring dealing with oxidative therapies, and other alternative self-help subjects. THERE IS NO MEDICAL ADVICE HERE! This list is the 1st Amendment in action. The things you will find here are for information and research purposes only. We are people sharing information we believe in. If you act on ideas found here, you do so at your own risk. Self-help requires intelligence, common sense, and the ability to take responsibility for your own actions. By joining the list you agree to hold yourself FULLY responsible FOR yourself. Do not use any ideas found here without consulting a medical professional, unless you are a researcher or health care provider. You can unsubscribe via e-mail by sending A NEW e-mail to the following address - NOT TO THE OXYPLUS LIST! - DO NOT USE REPLY BUTTON & DO NOT PUT THIS IN THE SUBJECT LINE or BODY of the message! : oxyplus-unsubscribeegroups oxyplus-normalonelist - switch your subscription to normal mode. ------------------------------------------------------------------------ There are 25 messages in this issue. Topics in this digest: 1. Re: pH From: ejohns9525@... 2. Re: Re:Credentials? From: ERCCoach@... 3. Hulda From: bubba 4. Re: venous pH From: LP 5. Credentials From: " Gail Naranjo " 6. Re: microhydrin/Willard Water From: " (GR) " 7. WILLARD WATER DISTRIBUTORS From: BILL D 8. Re: Hulda From: " foxter " 9. Re: skin cancer From: harpreet gulati 10. Re: Digest Number 1363 From: " Duncan Crow " 11. Re: Hulda From: Wayne Fugitt 12. Re: Hulda From: " Fred Walter " 13. Re: BUSTED: Credentials From: " Jim Lambert " 14. Re: venous pH From: " Jim Lambert " 15. Re: Re: venous pH From: LP 16. Re: Re: venous pH From: harpreet gulati 17. Re: WILLARD WATER DISTRIBUTORS From: Christelti@... 18. Re: WILLARD WATER DISTRIBUTORS From: " Nina Silver " 19. saliva hormone testing From: " Dave " 20. Re: iridology reading with AV From: " Gail Naranjo " 21. Re: iridology reading with AV From: luckower@... 22. Re: saliva hormone testing From: harpreet gulati 23. Re: Re: Hulda From: bubba 24. Re: gall/liver stones From: bubba 25. Alternative Medicine From: molecularrock@... ________________________________________________________________________ ________________________________________________________________________ Message: 1 Date: Sun, 23 Sep 2001 08:23:14 EDT From: ejohns9525@... Subject: Re: pH In a message dated 09/22/2001 9:30:10 PM Central Daylight Time, gwc@... writes: > I've started to monitor my saliva and urine pH first thing in the morning. > So far my saliva is 5.5 and the urine is 6. > > What are the optimum values for these? Are my values considered > dangerously low? > > Greg > > ______________ According to Dr. Carey Reams, each should be 6.40. Edith Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2001 Report Share Posted September 28, 2001 I don't wish to unsubscribe, I just have a question. Is it safe to drink alcholic beverages and take hydrogen peroxide, at the same time? OxyPLUS is an unmoderated e-ring dealing with oxidative therapies, and other alternative self-help subjects. THERE IS NO MEDICAL ADVICE HERE! This list is the 1st Amendment in action. The things you will find here are for information and research purposes only. We are people sharing information we believe in. If you act on ideas found here, you do so at your own risk. Self-help requires intelligence, common sense, and the ability to take responsibility for your own actions. By joining the list you agree to hold yourself FULLY responsible FOR yourself. Do not use any ideas found here without consulting a medical professional, unless you are a researcher or health care provider. You can unsubscribe via e-mail by sending A NEW e-mail to the following address - NOT TO THE OXYPLUS LIST! - DO NOT USE REPLY BUTTON & DO NOT PUT THIS IN THE SUBJECT LINE or BODY of the message! : oxyplus-unsubscribeegroups oxyplus-normalonelist - switch your subscription to normal mode. ------------------------------------------------------------------------ There are 25 messages in this issue. Topics in this digest: 1. Re: pH From: ejohns9525@... 2. Re: Re:Credentials? From: ERCCoach@... 3. Hulda From: bubba 4. Re: venous pH From: LP 5. Credentials From: " Gail Naranjo " 6. Re: microhydrin/Willard Water From: " (GR) " 7. WILLARD WATER DISTRIBUTORS From: BILL D 8. Re: Hulda From: " foxter " 9. Re: skin cancer From: harpreet gulati 10. Re: Digest Number 1363 From: " Duncan Crow " 11. Re: Hulda From: Wayne Fugitt 12. Re: Hulda From: " Fred Walter " 13. Re: BUSTED: Credentials From: " Jim Lambert " 14. Re: venous pH From: " Jim Lambert " 15. Re: Re: venous pH From: LP 16. Re: Re: venous pH From: harpreet gulati 17. Re: WILLARD WATER DISTRIBUTORS From: Christelti@... 18. Re: WILLARD WATER DISTRIBUTORS From: " Nina Silver " 19. saliva hormone testing From: " Dave " 20. Re: iridology reading with AV From: " Gail Naranjo " 21. Re: iridology reading with AV From: luckower@... 22. Re: saliva hormone testing From: harpreet gulati 23. Re: Re: Hulda From: bubba 24. Re: gall/liver stones From: bubba 25. Alternative Medicine From: molecularrock@... ________________________________________________________________________ ________________________________________________________________________ Message: 1 Date: Sun, 23 Sep 2001 08:23:14 EDT From: ejohns9525@... Subject: Re: pH In a message dated 09/22/2001 9:30:10 PM Central Daylight Time, gwc@... writes: > I've started to monitor my saliva and urine pH first thing in the morning. > So far my saliva is 5.5 and the urine is 6. > > What are the optimum values for these? Are my values considered > dangerously low? > > Greg > > ______________ According to Dr. Carey Reams, each should be 6.40. Edith Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2002 Report Share Posted August 31, 2002 I agree with that the sugar in yogurt comes from dairy sugar (like lactose). I think I'll check Dannon and see how many grams that has, but we may not be able to escape it! While some people do avoid yogurt altogether on this diet, others I've read about feel that the probiotics in it outweigh or " counteract " the dairy sugars. Stoneybrook Farms especially has extra probiotics, beyond acidophilous and bifidus. Personally, my case of yeast is much milder than many people here are experiencing, so I feel I can eat yogurt. I'll let everyone know if I do find one with less sugar listed! Thanks for the responses. --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2003 Report Share Posted December 31, 2003 Hello, am new to this group, am from Bombay India, have been diagnosed with hypothyroid 5 years back. My symptoms were fatigue, laziness, obesity, irritability, depression and above all dry skin on hands, so much so that I used to get cuts and had to continuosly use a cream. Initially I went to my skin specialists and was prescribed medicines which affected as long as I was taking them, but once I stopped all the symptoms came back. Suffered on and off for 2 years going from Doctor to Doctor then a specialist suggested that I go for a complete check up, and hypothyroid was found and since then I have been having thyroxine 100mg every morning on an empty stomach and taking tea after half an hour. After every 6 months I go for a check up and it is in control. But sometimes inspite of all this I do suffer from dry skin on hands any suggestions????? Pushpa Mehta Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2004 Report Share Posted January 1, 2004 Hi and welcome! I've heard some folks say that using coconut oil or olive oil on your hands can help. I haven't tried it yet though. I have the same problem sometimes with my cracking and bleeding in spots from being so dry. Winter is really hard on my hands. My work environment is not good for dry hands either, so it's a challenge. I'm gonna have to try the coconut oil and/or olive oil and see if it helps. Good luck! Sheila Pushpa Mehta <pushpakishore@...> wrote: Hello, am new to this group, am from Bombay India, have been diagnosed with hypothyroid 5 years back. My symptoms were fatigue, laziness, obesity, irritability, depression and above all dry skin on hands, so much so that I used to get cuts and had to continuosly use a cream. Initially I went to my skin specialists and was prescribed medicines which affected as long as I was taking them, but once I stopped all the symptoms came back. Suffered on and off for 2 years going from Doctor to Doctor then a specialist suggested that I go for a complete check up, and hypothyroid was found and since then I have been having thyroxine 100mg every morning on an empty stomach and taking tea after half an hour. After every 6 months I go for a check up and it is in control. But sometimes inspite of all this I do suffer from dry skin on hands any suggestions????? Pushpa Mehta Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2004 Report Share Posted January 16, 2004 In a message dated 1/16/04 4:15:32 PM Eastern Standard Time, writes: > THE YOLK TURNS INTO AN HERB CALLED LECITHIN WHICH IS GREAT FOR EPILEPSY Lecithin is NOT an herb MJH " The Basil Book " http://foxhillfarm.us/FireBasil Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2004 Report Share Posted January 16, 2004 In a message dated 1/16/04 4:15:32 PM Eastern Standard Time, writes: > > On Wed, 14 Jan 2004 17:06:30 -0800 (PST) " Delores F. " > <tequilarose413@...> writes: > >Hi, > >Nope...not following any specific diet, just staying low carbs. > >Trying to stay as low as 20 a day. > > > >Gonna start getting back into using my juicer for . > >He's not really eating...so I don't think that the keto diet would > >be good for him to follow. > >Also...he's been having an ON GOING Battle with " Withholding " . I > >think it is more than him JUST NOT WANTING TO GO TO THE BATHROOM. I > >think that there is another problem, but ...WHAT DO I KNOW??? > >EVERYTIME I bring that up to the doctors attention...they look at me > >like I am medusa! > > > >WE've tried regiments of sennakot..NOTHING...fleets, suppositories, > >Fletchers Castor oil...MINERAL OIL!! NOTHING! > >I'm ready for the heavy artillery....dynomite!! LOL > >any suggestions? > >have a good night! > >dee > > Dee How much Magnesium does your child get in a useable form? People need between 50 to 100% magnesium as they get calcium from all sources, dietary and supplements. People under great stress and with brain issues need the upper end of the scale. And, don't forget that B6 is the cofactor for Mg it is necessary to help Mg do its thing. MJH " The Basil Book " http://foxhillfarm.us/FireBasil Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2006 Report Share Posted May 18, 2006 Re: Rod Removal and preferences of the different surgeons I know my local doctors have zero experience with revision surgery, but they have all unanimously agreed that it is dangerous to try to remove them and that they would be embedded in too much bone. And, it seems to me that many doctors only remove the bottom portion of the rods in order to do the osteotomies. In my particular case, I have a third rod across my pelvis that totally mystifies most doctors I have seen. The only doctor who seemed unsurprised at what he saw on my x-ray was Barton Sachs at Texas Back Institute. In fact, his report states that possible interventions for my flaback could range from "something as minimal as just removal of her instrumentation or something more invasive such as removal of instrumentation, repair of pseudoarthrosis, osteotomy at L5-S1 with anterior and posterior spine fusion." I do know that Dr Sachs has experience at removing rods, because I got his name from a member here who opted to have her rods removed. I wonder whether any of the other doctors who prefer to leave more of the rod intact would work with me since my rods go all the way to my sacrum and Dr Sachs explained that the third rod most likely goes through my pelvis (and thus squeezed the SI joints and could be part of the cause of my pain). Re: Bike Riding My original surgery involved fusion to the sacrum (and my rods go from T10 to the sacrum) but my fusion did not completely fuse at the L5/S1 level. I have never been able to stand up straight since having the surgery in 1973. Walking has always been painful, but the bent over position has been perfect for bike riding. I love to ride my bike! After I got addicted to taking long bike rides again about 9 years ago, I hated to have to quit during the winter. My mom gave me her exercise bicycle, but it was not comfortable. Not only is it boring to ride in the house, but the position was just too upright to be comfortable. I tried a recumbent bike at a used sporting goods store, and that was extremely painful. I should have bought a stand to put my 15 speed bike on in the house (but it cost more than I paid for the bike!!) I do know that several people who have had revision surgery found their old bikes to be uncomfotable after revision. But for an unrevised spine, you can't beat a regular old bike from the discount department store. I believe most of the folks I know of that have had revision and ride bikes post at another forum, but it seems there is some kind of "townie" bike that they have found ideal (but definitely not cheap). I didn't pay much attention since my old back is still good for me. I did have a bike accident about 6 years ago. A plumber's truck was parked partially on the sidewalk, and I didn't see the pipe sticking off the back of it until too late. I got scratched up on my right side (I was wearing bike shorts and a sports bra), and my leg broke just above the right ankle. No injury to my back. The worst thing was that most of the pain from my back goes down my left side, and I could not walk on crutches. Fortunately, the school where I was working had a wheelchair and I was able to use it at work. Re: Choice of surgeon After reading flatback forums for a few years, I have come to the conclusion that if I could go to any doctor of my choice for surgery, it would probably be Dr Rand. Dr Bridwell would probably also be a good choice, but I do like the fact that Dr Rand is having his patients use a bone stimulator to help get a good fusion. Since I have two areas of nonfusion, this seems like a big deal to me. It seems that some doctors are still using somewhat long rods instead of the little short things that go from one level to the next, attached with pedicle screws. Some doctors say this is ok, because the rods are bent. However, I read one research study that suggested that body temperature causes the rods to try to straighten back out (at least that is what I got out of it). Not something I want to risk. But the main reason that I would choose Dr Rand is because most of the people who seem to be the closest to pain-free after revision and back to their normal activities seem to have had Dr Rand as their surgeon. Whether this is because most of them live on the East Coast, or because the majority of folks on the forum that I frequent the most are Rand's patients, or because he is really the best, I don't know. But if I am going to have revision surgery, I would like to do it just one time, and be pain free and back to being able to do the things I enjoy again. On the other hand, Boston is an awful long distance from me, so I will probably go back to Dr Sachs at least one more time to find out what he thinks now that I have had the MRI and other tests that he wanted done before my return visit. Unfortunately, my insurance changed and I am just now getting around to trying to convince my new insurance to let me go out of state. I have an appointment with a local ortho who is in my network for next week, and I am hoping he will recommend that I go out of state. One of the things that Dr Sachs had ordered was SI joint injections. It took a couple of tries to find a good local pain management doctor who was familiar with scoliosis and harrington rods, but he has done absolute wonders for me. Unfotunately, the injections are awfully expensive and it doesn't seem feasible to keep having them every 2 to 3 months for the rest of my life. (and he hasn't suggested an alternative) Re: Depression OMG, I have been very depressed for the past year. My pain management guy said I had worried him quite a bit on my first visit. And one morning recently, I woke up in so much pain that I told my husband that I just can't live like this anymore. It scared him so badly, he followed me to work because he was afraid I was going to drive off a bridge on purpose. I would at least try to wait until my kids are grown. Several doctors had offered me antidepressants over the years, and my husband never wanted me to take them because they cannot be stopped cold turkey and they can cause unpleasant side effects. But after the spinal injections, I would have some pretty wild mood swings, so I finally got my prescription for cymbalta filled (after reading all the info on their website -- www.depressionhurts.com) After taking one of them, I was a bit hyper and couldn't sleep. The next day I bought plane tickets to the Bahamas (even though the instructions say not to make any big decisions for the first couple of weeks), so I didn't take any more. The prospect of going to the Bahamas was enough to keep the depression away until after the next set of injections. I took one more pill then, and it helped immediately. I haven't taken any more, but perhaps I should. One day when I went to work, all the handicapped parking places were full. The regular parking lot is 1/10 of a mile from the entrance, and it usually takes me 20 minutes to get to my classroom from the handicapped area. There was NO WAY I was going to park in the far parking lot. So, I called the principal and told her I was going back home since there was nowhere to park. The next day, the secretary asked me how much longer I was going to put up with my physical problems. When I told here I was going to try to wait until my kids were grown before I opt out of life, she was a bit shocked and I was confused. What the hell else can I do? So, I am going to finally get off my scared butt and consider surgery. ARRRRRGGGG! Notice I just said that I am finally considering it -- I am not fully convinced yet. But, when it hurts to go to bed and I wake up in the middle of the night in pain, I realize that flatback sucks. And if I take my neurontin at bedtime, I may be able to finally sleep through the night, but it is hard to do math at 7:30 AM. And if I take something stronger, my students think I am on drugs. Sneak preview the all-new .com. It's not radically different. Just radically better. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2006 Report Share Posted May 19, 2006 bahadreama, I don't understand Dr. Sachs report. Is he saying there are several surgical options for you? If you've got a flat back, it doesn't seem like instrumentation removal alone would do anything to correct that. The docs that I've seen that would plan to remove only the bottom portion of my Harrington RoAds sort of gave me the impression - if it ain't broke, don't fix it. They gave me the impression that the parts of the Harrington Rods in my thoracic spine aren't hurting anything, so why take the risk of messing with them. And yes, they have to take them out of the lumbar area so they can restore the lordosis through osteotomy(ies) and preserve the newly re-created lordotis curve in that area with the newer style instrumentation, which allows for this where the Harrington Rods didn't. Re: Bikes. My husband recently bought a bike (just a fairly cheap one at a toy store), and it seems they are made much different than the old style ones were. They have several hefty looking shock absorbers on them, which seem a really good idea for all people, especially a person with spine problems. Just wanted to point out that if the bumpiness of old bikes was anyone's main problem in the past, it might be worth trying out some of the new ones. Re: A couple of things came to my mind about your work secretary's comment. I know of some people who are not clued in to the world of spine problems who are under the mistaken impression that there is a surgical answer to all physical difficulties. I don't think they realize how frightening the thought of more spine surgery is to us after all we've been through in the past. Maybe the secretary, in a rather vague way, was simply asking when you were going to have revision surgery. Or perhaps she was even wondering if going on disability was an option for you. Either way, it sounds like she didn't quite have a feel for you mindset at the time. I'm glad you are considering revision surgery, though, and hope that if you decide to do so, it's not too difficult for you to find a surgeon that is right for you. I myself am still leaning toward Dr. LaGrone, who would take out all my Harrington Rods (good riddance!). My spine problems have had to get pushed aside for the last 10 months as I've had to focus on recovery from my hip surgery, but things are turning around now and my back is becoming more bothersome, so I feel I have to start getting more serious about making the decision to have revision surgery. Plus my husband pointed out to me earlier this week that I'm leaning forward more than I was a month ago. I appreciate that he's keeping an eye on me, but I sure was bummed to hear that. Take care and good luck, loriann > > Re: Rod Removal and preferences of the different surgeons > > > I know my local doctors have zero experience with revision surgery, but they have all unanimously agreed that it is dangerous to try to remove them and that they would be embedded in too much bone. And, it seems to me that many doctors only remove the bottom portion of the rods in order to do the osteotomies. In my particular case, I have a third rod across my pelvis that totally mystifies most doctors I have seen. The only doctor who seemed unsurprised at what he saw on my x-ray was Barton Sachs at Texas Back Institute. In fact, his report states that possible interventions for my flaback could range from " something as minimal as just removal of her instrumentation or something more invasive such as removal of instrumentation, repair of pseudoarthrosis, osteotomy at L5-S1 with anterior and posterior spine fusion. " > > I do know that Dr Sachs has experience at removing rods, because I got his name from a member here who opted to have her rods removed. I wonder whether any of the other doctors who prefer to leave more of the rod intact would work with me since my rods go all the way to my sacrum and Dr Sachs explained that the third rod most likely goes through my pelvis (and thus squeezed the SI joints and could be part of the cause of my pain). > > > Re: Bike Riding > > > My original surgery involved fusion to the sacrum (and my rods go from T10 to the sacrum) but my fusion did not completely fuse at the L5/S1 level. I have never been able to stand up straight since having the surgery in 1973. Walking has always been painful, but the bent over position has been perfect for bike riding. I love to ride my bike! After I got addicted to taking long bike rides again about 9 years ago, I hated to have to quit during the winter. My mom gave me her exercise bicycle, but it was not comfortable. Not only is it boring to ride in the house, but the position was just too upright to be comfortable. I tried a recumbent bike at a used sporting goods store, and that was extremely painful. I should have bought a stand to put my 15 speed bike on in the house (but it cost more than I paid for the bike!!) > > I do know that several people who have had revision surgery found their old bikes to be uncomfotable after revision. But for an unrevised spine, you can't beat a regular old bike from the discount department store. I believe most of the folks I know of that have had revision and ride bikes post at another forum, but it seems there is some kind of " townie " bike that they have found ideal (but definitely not cheap). I didn't pay much attention since my old back is still good for me. > > I did have a bike accident about 6 years ago. A plumber's truck was parked partially on the sidewalk, and I didn't see the pipe sticking off the back of it until too late. I got scratched up on my right side (I was wearing bike shorts and a sports bra), and my leg broke just above the right ankle. No injury to my back. The worst thing was that most of the pain from my back goes down my left side, and I could not walk on crutches. Fortunately, the school where I was working had a wheelchair and I was able to use it at work. > > > Re: Choice of surgeon > > > After reading flatback forums for a few years, I have come to the conclusion that if I could go to any doctor of my choice for surgery, it would probably be Dr Rand. Dr Bridwell would probably also be a good choice, but I do like the fact that Dr Rand is having his patients use a bone stimulator to help get a good fusion. Since I have two areas of nonfusion, this seems like a big deal to me. > > It seems that some doctors are still using somewhat long rods instead of the little short things that go from one level to the next, attached with pedicle screws. Some doctors say this is ok, because the rods are bent. However, I read one research study that suggested that body temperature causes the rods to try to straighten back out (at least that is what I got out of it). Not something I want to risk. > > > But the main reason that I would choose Dr Rand is because most of the people who seem to be the closest to pain-free after revision and back to their normal activities seem to have had Dr Rand as their surgeon. Whether this is because most of them live on the East Coast, or because the majority of folks on the forum that I frequent the most are Rand's patients, or because he is really the best, I don't know. But if I am going to have revision surgery, I would like to do it just one time, and be pain free and back to being able to do the things I enjoy again. > > On the other hand, Boston is an awful long distance from me, so I will probably go back to Dr Sachs at least one more time to find out what he thinks now that I have had the MRI and other tests that he wanted done before my return visit. Unfortunately, my insurance changed and I am just now getting around to trying to convince my new insurance to let me go out of state. I have an appointment with a local ortho who is in my network for next week, and I am hoping he will recommend that I go out of state. > > One of the things that Dr Sachs had ordered was SI joint injections. It took a couple of tries to find a good local pain management doctor who was familiar with scoliosis and harrington rods, but he has done absolute wonders for me. Unfotunately, the injections are awfully expensive and it doesn't seem feasible to keep having them every 2 to 3 months for the rest of my life. (and he hasn't suggested an alternative) > > > Re: Depression > > > OMG, I have been very depressed for the past year. My pain management guy said I had worried him quite a bit on my first visit. And one morning recently, I woke up in so much pain that I told my husband that I just can't live like this anymore. It scared him so badly, he followed me to work because he was afraid I was going to drive off a bridge on purpose. I would at least try to wait until my kids are grown. > > Several doctors had offered me antidepressants over the years, and my husband never wanted me to take them because they cannot be stopped cold turkey and they can cause unpleasant side effects. But after the spinal injections, I would have some pretty wild mood swings, so I finally got my prescription for cymbalta filled (after reading all the info on their website -- www.depressionhurts.com) After taking one of them, I was a bit hyper and couldn't sleep. The next day I bought plane tickets to the Bahamas (even though the instructions say not to make any big decisions for the first couple of weeks), so I didn't take any more. The prospect of going to the Bahamas was enough to keep the depression away until after the next set of injections. I took one more pill then, and it helped immediately. I haven't taken any more, but perhaps I should. > > One day when I went to work, all the handicapped parking places were full. The regular parking lot is 1/10 of a mile from the entrance, and it usually takes me 20 minutes to get to my classroom from the handicapped area. There was NO WAY I was going to park in the far parking lot. So, I called the principal and told her I was going back home since there was nowhere to park. The next day, the secretary asked me how much longer I was going to put up with my physical problems. When I told here I was going to try to wait until my kids were grown before I opt out of life, she was a bit shocked and I was confused. What the hell else can I do? > > So, I am going to finally get off my scared butt and consider surgery. ARRRRRGGGG! Notice I just said that I am finally considering it -- I am not fully convinced yet. But, when it hurts to go to bed and I wake up in the middle of the night in pain, I realize that flatback sucks. And if I take my neurontin at bedtime, I may be able to finally sleep through the night, but it is hard to do math at 7:30 AM. And if I take something stronger, my students think I am on drugs. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2006 Report Share Posted May 19, 2006 Dr Sachs seems to think that the rods might be causing some of my pain. A large part of my pain comes from the area under the scar where they harvested bone for the surgery. It is also where the third rod ends, and very near the SI joint. My pain management guy verified that the rod is partially causing my pain. In addition, the longest rod has been broken ever since I got out of the cast, and one doctor's report indicates that the hook at the top is not attached to anything. I really don't see how just removing the rods would help, either. I do notice that I tend to lean very badly to the side when I am sitting at the computer. I can't imagine how bad my posture would be without the rods! I am curious to see what the local guy will have to say next week. I will take Dr Sachs' report with me to the appointment, but I think I am only seeing the PA for the first visit. > > bahadreama, > > I don't understand Dr. Sachs report. Is he saying there are several > surgical options for you? If you've got a flat back, it doesn't seem > like instrumentation removal alone would do anything to correct that. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2006 Report Share Posted May 19, 2006 bikes: like I said, I didn't pay a whole lot of attention to the bike discussion, but maybe the " townie " models also make it easier to put your feet flat on the ground?? and yes, I think the secretary had more in mind that I should try to go on disability instead of continuing to work. The parking lot incident did prompt me to buy a scooter, and now I am in less pain at the end of the day. Our new school is huge and it is built in a circle. Somebody on the track team told me that it is one mile to run around the outside of it. I walk most of the circle to get from my car to the office, and then to my classroom. Well, actually, now I ride. I have been a couple of places that I wouldn't have thought to go without the scooter -- including the local arts festival where my son performs every year, and his school band picnic last week! I could even go to the mall again! > > > > Re: Rod Removal and preferences of the different surgeons > > > > > > I know my local doctors have zero experience with revision > surgery, but they have all unanimously agreed that it is dangerous to > try to remove them and that they would be embedded in too much bone. > And, it seems to me that many doctors only remove the bottom portion > of the rods in order to do the osteotomies. In my particular case, I > have a third rod across my pelvis that totally mystifies most doctors > I have seen. The only doctor who seemed unsurprised at what he saw on > my x-ray was Barton Sachs at Texas Back Institute. In fact, his > report states that possible interventions for my flaback could range > from " something as minimal as just removal of her instrumentation or > something more invasive such as removal of instrumentation, repair of > pseudoarthrosis, osteotomy at L5-S1 with anterior and posterior spine > fusion. " > > > > I do know that Dr Sachs has experience at removing rods, because I > got his name from a member here who opted to have her rods removed. I > wonder whether any of the other doctors who prefer to leave more of > the rod intact would work with me since my rods go all the way to my > sacrum and Dr Sachs explained that the third rod most likely goes > through my pelvis (and thus squeezed the SI joints and could be part > of the cause of my pain). > > > > > > Re: Bike Riding > > > > > > My original surgery involved fusion to the sacrum (and my rods go > from T10 to the sacrum) but my fusion did not completely fuse at the > L5/S1 level. I have never been able to stand up straight since having > the surgery in 1973. Walking has always been painful, but the bent > over position has been perfect for bike riding. I love to ride my > bike! After I got addicted to taking long bike rides again about 9 > years ago, I hated to have to quit during the winter. My mom gave me > her exercise bicycle, but it was not comfortable. Not only is it > boring to ride in the house, but the position was just too upright to > be comfortable. I tried a recumbent bike at a used sporting goods > store, and that was extremely painful. I should have bought a stand > to put my 15 speed bike on in the house (but it cost more than I paid > for the bike!!) > > > > I do know that several people who have had revision surgery found > their old bikes to be uncomfotable after revision. But for an > unrevised spine, you can't beat a regular old bike from the discount > department store. I believe most of the folks I know of that have had > revision and ride bikes post at another forum, but it seems there is > some kind of " townie " bike that they have found ideal (but definitely > not cheap). I didn't pay much attention since my old back is still > good for me. > > > > I did have a bike accident about 6 years ago. A plumber's truck > was parked partially on the sidewalk, and I didn't see the pipe > sticking off the back of it until too late. I got scratched up on my > right side (I was wearing bike shorts and a sports bra), and my leg > broke just above the right ankle. No injury to my back. The worst > thing was that most of the pain from my back goes down my left side, > and I could not walk on crutches. Fortunately, the school where I was > working had a wheelchair and I was able to use it at work. > > > > > > Re: Choice of surgeon > > > > > > After reading flatback forums for a few years, I have come to the > conclusion that if I could go to any doctor of my choice for surgery, > it would probably be Dr Rand. Dr Bridwell would probably also be a > good choice, but I do like the fact that Dr Rand is having his > patients use a bone stimulator to help get a good fusion. Since I > have two areas of nonfusion, this seems like a big deal to me. > > > > It seems that some doctors are still using somewhat long rods > instead of the little short things that go from one level to the next, > attached with pedicle screws. Some doctors say this is ok, because > the rods are bent. However, I read one research study that suggested > that body temperature causes the rods to try to straighten back out > (at least that is what I got out of it). Not something I want to risk. > > > > > > But the main reason that I would choose Dr Rand is because most of > the people who seem to be the closest to pain-free after revision and > back to their normal activities seem to have had Dr Rand as their > surgeon. Whether this is because most of them live on the East Coast, > or because the majority of folks on the forum that I frequent the most > are Rand's patients, or because he is really the best, I don't know. > But if I am going to have revision surgery, I would like to do it just > one time, and be pain free and back to being able to do the things I > enjoy again. > > > > On the other hand, Boston is an awful long distance from me, so I > will probably go back to Dr Sachs at least one more time to find out > what he thinks now that I have had the MRI and other tests that he > wanted done before my return visit. Unfortunately, my insurance > changed and I am just now getting around to trying to convince my new > insurance to let me go out of state. I have an appointment with a > local ortho who is in my network for next week, and I am hoping he > will recommend that I go out of state. > > > > One of the things that Dr Sachs had ordered was SI joint > injections. It took a couple of tries to find a good local pain > management doctor who was familiar with scoliosis and harrington rods, > but he has done absolute wonders for me. Unfotunately, the injections > are awfully expensive and it doesn't seem feasible to keep having them > every 2 to 3 months for the rest of my life. (and he hasn't suggested > an alternative) > > > > > > Re: Depression > > > > > > OMG, I have been very depressed for the past year. My pain > management guy said I had worried him quite a bit on my first visit. > And one morning recently, I woke up in so much pain that I told my > husband that I just can't live like this anymore. It scared him so > badly, he followed me to work because he was afraid I was going to > drive off a bridge on purpose. I would at least try to wait until my > kids are grown. > > > > Several doctors had offered me antidepressants over the years, and > my husband never wanted me to take them because they cannot be stopped > cold turkey and they can cause unpleasant side effects. But after the > spinal injections, I would have some pretty wild mood swings, so I > finally got my prescription for cymbalta filled (after reading all the > info on their website -- www.depressionhurts.com) After taking one > of them, I was a bit hyper and couldn't sleep. The next day I bought > plane tickets to the Bahamas (even though the instructions say not to > make any big decisions for the first couple of weeks), so I didn't > take any more. The prospect of going to the Bahamas was enough to > keep the depression away until after the next set of injections. I > took one more pill then, and it helped immediately. I haven't taken > any more, but perhaps I should. > > > > One day when I went to work, all the handicapped parking places > were full. The regular parking lot is 1/10 of a mile from the > entrance, and it usually takes me 20 minutes to get to my classroom > from the handicapped area. There was NO WAY I was going to park in > the far parking lot. So, I called the principal and told her I was > going back home since there was nowhere to park. The next day, the > secretary asked me how much longer I was going to put up with my > physical problems. When I told here I was going to try to wait until > my kids were grown before I opt out of life, she was a bit shocked and > I was confused. What the hell else can I do? > > > > So, I am going to finally get off my scared butt and consider > surgery. ARRRRRGGGG! Notice I just said that I am finally > considering it -- I am not fully convinced yet. But, when it hurts to > go to bed and I wake up in the middle of the night in pain, I realize > that flatback sucks. And if I take my neurontin at bedtime, I may be > able to finally sleep through the night, but it is hard to do math at > 7:30 AM. And if I take something stronger, my students think I am > on drugs. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2006 Report Share Posted May 19, 2006 Yikes, bahadreama! No wonder you want to get your instrumentation removed!! I've heard from doctors that if a fusion is solid, then the rods really aren't doing anything, but then I've read other reports that sometimes fusions fail after the rods are removed, so I personally don't think I'd trust having my rods out with no new instrumentation being inserted. Do you have much of a scoliosis curve above your current fusion? I lean a lot when I'm sitting, too, but I think it's from my residual curve from what wasn't corrected in the area of my fusion. Good luck next week! loriann > > Dr Sachs seems to think that the rods might be causing some of my > pain. A large part of my pain comes from the area under the scar > where they harvested bone for the surgery. It is also where the third > rod ends, and very near the SI joint. My pain management guy verified > that the rod is partially causing my pain. In addition, the longest > rod has been broken ever since I got out of the cast, and one doctor's > report indicates that the hook at the top is not attached to anything. > > > I really don't see how just removing the rods would help, either. I > do notice that I tend to lean very badly to the side when I am sitting > at the computer. I can't imagine how bad my posture would be without > the rods! > > I am curious to see what the local guy will have to say next week. I > will take Dr Sachs' report with me to the appointment, but I think I > am only seeing the PA for the first visit. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2006 Report Share Posted May 19, 2006 If I am reading my xray correctly, I have a 42 degree curve in the middle of my fusion (between T11 and L3). The rods (and presumably the fusion) go from T10 to S1. According to Dr Sachs's report, I have pseudarthrosis at L5/S1 (but an MRI report shows that the left facet is fused) and pseudarthrosis at T12/L1). you can see pictures at http://members.cox.net/bahadreama/scoliosis.htm you can see why I refuse to call that third bar " horizontal " > Do you have much of a scoliosis curve above your current fusion? I > lean a lot when I'm sitting, too, but I think it's from my residual > curve from what wasn't corrected in the area of my fusion. > > Good luck next week! > > loriann > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2006 Report Share Posted May 20, 2006 bahadreama, I was looking at my x-ray comparing it to yours and next to the Harrington Rod where the curve is the worse (I think mine is about 30 degrees), there is a black space. Does anyone know -- Does this mean that in that area, the rod is NOT imbedded in the bone, so that this is the area that will be easiest to remove? I think I'm just grasping at straws hoping that at least in one area my doc won't have a terrible time getting my rods out! loriann > > If I am reading my xray correctly, I have a 42 degree curve in the > middle of my fusion (between T11 and L3). The rods (and presumably > the fusion) go from T10 to S1. According to Dr Sachs's report, I > have pseudarthrosis at L5/S1 (but an MRI report shows that the left > facet is fused) and pseudarthrosis at T12/L1). > > you can see pictures at > http://members.cox.net/bahadreama/scoliosis.htm > > you can see why I refuse to call that third bar " horizontal " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2006 Report Share Posted May 22, 2006 I have no clue. I read the reports of 5 different doctors, and ended up very confused. My husband told me that I should throw the reports of the workman's comp doctors in the garbage because they didn't know anything about my condition and because their goal was to support workman's comp in not paying me for my injury. One of the workman's comp doctors said my range of motion is within normal limits!! > > > > If I am reading my xray correctly, I have a 42 degree curve in the > > middle of my fusion (between T11 and L3). The rods (and presumably > > the fusion) go from T10 to S1. According to Dr Sachs's report, I > > have pseudarthrosis at L5/S1 (but an MRI report shows that the left > > facet is fused) and pseudarthrosis at T12/L1). > > > > you can see pictures at > > http://members.cox.net/bahadreama/scoliosis.htm > > > > you can see why I refuse to call that third bar " horizontal " > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.