Guest guest Posted October 31, 2005 Report Share Posted October 31, 2005 > From: " JMC " <jconner2k3@...> JMC: Welcome, for sure. Now, because it seems you have not reviewed the documents in our library, allow me to be brutal -- others in this forum will be more gentle: > I was told today by an ENT specialist that I have Samter's Triad. I > am actually thrilled to know that there is a term for this craziness. > I thought I was unique. I am going to have my nasal polyps removed > soon. I forgot to ask the specialist, will the aspirin sensitivity > then fade? The specialist probably won't know, and whatever he/she says will probably be based on assumption or guess, meant to maintain some level of credibility and authority. He/she will probably say enouraging things about the prognosis, but if he/she has not studied Samters, his/her words will be worth only the paper they're printed on. Most ENT guys are good with the knife, and that's about it. Everyone in this forum knows that surgery has no effect on aspirin intolerance, most from actual experience. > Or will medication be necessary? -Sneezy Dallas Medication. Irrigation. Desensitization. Diet. Take one, take all. And, btw, your polyps will return, probably in less than a year. Study the library. Review the message archive. You will learn more here than from your specialist. -- Ken West Check the library . . . samters/links Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2005 Report Share Posted November 1, 2005 It's always good to at least have a name to tag on to the insanity that haunts our lives. It's much more common than most people think, despite MANY doctors knowing VERY little about it sadly. Your aspirin sensativity (or better yet, your salicylate sensitivity) is not going to change with surgery. It causes the polyps, not the other way around. You may actually begin to notice your sensitivity more for the first time ever once you have the polyps removed and can actually FEEL them growing back when you eat the wrong things or miss medication. You'll probably be using a combination of surgery, drugs, and diet changes for life to be able to maintain anything even close to normal. I highly recomend reading up on ANYTHING you can find, be it here, the library, or elsewhere, and compare what you find to gleen the real information. You'll have more time for research than you doctor ever will and more time to apply it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2005 Report Share Posted November 1, 2005 Judy you got it in one about a name tag for an insanity. I found a great Immunologist (or so I thought) near Sydney in Australia who put me through nine weeks of salicylate densensitising and all the time whilst I was on prednisone. Total waste of time I found out later. Luckily I seem to have found the right ENT who knows what he's doing and so far so good, five months now since my surgery, and I'd say 85% of my sense of smell has returned and my sinus is finally under control (for now). Asthma still comes back at the odd moment but nothing major. Cheers Re: Newly diagnosed It's always good to at least have a name to tag on to the insanity that haunts our lives. It's much more common than most people think, despite MANY doctors knowing VERY little about it sadly. Your aspirin sensativity (or better yet, your salicylate sensitivity) is not going to change with surgery. It causes the polyps, not the other way around. You may actually begin to notice your sensitivity more for the first time ever once you have the polyps removed and can actually FEEL them growing back when you eat the wrong things or miss medication. You'll probably be using a combination of surgery, drugs, and diet changes for life to be able to maintain anything even close to normal. I highly recomend reading up on ANYTHING you can find, be it here, the library, or elsewhere, and compare what you find to gleen the real information. You'll have more time for research than you doctor ever will and more time to apply it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2005 Report Share Posted November 1, 2005 I have to take issue with the salicylate sensitivity. I don't think all of us are sensitive to salicylates. I for one do not seem to have any sensitivity to salicylates except aspirin. Actually I think it's the acetylated component that might cause the sensitivity in Samters. Although I'm not a chemist and I don't understand how NSAIDs fit into this. I don't know how others feel about this, but I wouldn't assume so quickly that everyone who has Samters has salicylate sensitivity. I am sure some, even many, of us do have salicylate sensitivity in addition to Samters, but I do not believe it is one and the same. Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2005 Report Share Posted November 2, 2005 I would partially agree. I have only noticed problems with Aspirin and Alcohol. Nothing else. There are a lot of foods on the " Very high " etc list which I eat all of the time, and do not notice any problems with. > > I have to take issue with the salicylate sensitivity. I don't think > all of us are sensitive to salicylates. I for one do not seem to have > any sensitivity to salicylates except aspirin. Actually I think it's > the acetylated component that might cause the sensitivity in Samters. > Although I'm not a chemist and I don't understand how NSAIDs fit into > this. > > I don't know how others feel about this, but I wouldn't assume so > quickly that everyone who has Samters has salicylate sensitivity. I > am sure some, even many, of us do have salicylate sensitivity in > addition to Samters, but I do not believe it is one and the same. > > > Lori > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2005 Report Share Posted November 29, 2005 > > Hi all, > I've been reading the messages and I wanted to introduce myself. I've > been officially diagnosed. I was in physical therapy, but the doctor > ended that fearing it would make my condition worse. I've been > referred to a pain clinic where he is recommending epidural > injections. Until then, I guess I must continue to endure the pain. > Mine is in the lower back and my right leg stays numb most of the > time. I alternate cold packs and heat on it and it seems to help. I'm > taking naproxen and flexaril for now. However, the flexaril seems to > put me in a depressive mood. Anyone had that to happen? Any > experiences would be greatly appreciated. > > Nessie > Hello Nessie, I also have been recently diagnosed with spinal stenosis plus other related problems. I also have had lower back pain emanating to my right buttock accompanied by numbness in my right foot. I have been an enthusiastic walker, but this condition has slowed me down, as the pain increased with activity (although just standing still for several minutes seems to be the worst). After seeing a surgeon, his recommendation is to start with anti-inflammatory (Voltaren) and muscle relaxant (Flexeril). The Voltaren has reduced my pain significantly to the point where I can walk again for exercise - albeit still with some pain after the first mile, but the pain is low level enough that I can manage. Naproxen did not work for me. The Flexeril is useless to me - it gives me a headache and makes me feel very drowsy and hung over the next day. The anti-inflammatory medication is working for now. The neurologist indicatest that epidural steroids are the next step. Surgery is a possibility, but not in the near future. W. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2005 Report Share Posted November 30, 2005 Nessie & , I like have also have a comorbidity, so I take additional medications for that condition. But for anti-inflamatory I take Etodolac...I agree Naproxen doesn't do anything for me for inflamation pain but neither do most other medicines in this class. I too take the Flexeril...most people I talk to that have a neurological pain condition seem to start out with Flexeril. I don't know how long you've been taking it, the dosages (how many of the 10 mg you take at one time), or how long you have been taking the medication, but you might bring that up with the physician. Flexeril does take, depending on your system, a little while to get "used" to. If I miss a few doses, I know for a couple of days when I start back up I will be just as said tired and "drugged out". But the symptoms do seem to pass. Unfortuantely I can't tell you how long it took for me to adjust originally because I started several medications at the same time, so it would be impossible to isolate. Flexeril is linked to antidepression medications and if you are taking any medication for that reason it may make you hypersensitive. From what I understand you really need to check the interactions with any other medication you are taking with Flexeril....that is where some of the more severe side effects come into play. I don't know anything about it but I do know previously someone mentioned they used a pain patch that worked for them in reference to pain. I too use a lot of heat...P & G is making a fortune off of me and those Thermacare packs. But they are the only ones thin enough and flexable enough to stick on and forget about, to be able to got on with life. I know some research I've read has mentioned the use of TENS machines....those ar the the little electrical nodes that send zaps of energy to the muscles. You'd really need to get some instruction on their use, but maybe that might be an option. I wish you luck. - Bambi Weinhardt <jwweinhardt@...> wrote: >> Hi all,> I've been reading the messages and I wanted to introduce myself. I've > been officially diagnosed. I was in physical therapy, but the doctor > ended that fearing it would make my condition worse. I've been > referred to a pain clinic where he is recommending epidural > injections. Until then, I guess I must continue to endure the pain. > Mine is in the lower back and my right leg stays numb most of the > time. I alternate cold packs and heat on it and it seems to help. I'm > taking naproxen and flexaril for now. However, the flexaril seems to > put me in a depressive mood. Anyone had that to happen? Any > experiences would be greatly appreciated. > > Nessie>Hello Nessie,I also have been recently diagnosed with spinal stenosis plus other related problems. I also have had lower back pain emanating to my right buttock accompanied by numbness in my right foot. I have been an enthusiastic walker, but this condition has slowed me down, as the pain increased with activity (although just standing still for several minutes seems to be the worst). After seeing a surgeon, his recommendation is to start with anti-inflammatory (Voltaren) and muscle relaxant (Flexeril). The Voltaren has reduced my pain significantly to the point where I can walk again for exercise - albeit still with some pain after the first mile, but the pain is low level enough that I can manage. Naproxen did not work for me. The Flexeril is useless to me - it gives me a headache and makes me feel very drowsy and hung over the next day. The anti-inflammatory medication is working for now. The neurologist indicatest that epidural steroids are the next step. Surgery is a possibility, but not in the near future. W. Music Unlimited - Access over 1 million songs. Try it free. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2011 Report Share Posted September 27, 2011 I've been having low back pain for several years, but since getting stuck in an airport security line for over 90 minutes in May - standing, shuffling one step at a time - with no support, the pain has really exacerbated. MRI's in past years showed disk space narrowing, but the most recent MRI confirmed the spinal stenosis. The neurosurgeon's words were simple. "You'll know when it's time." That scares me to death. But I see how this pain has changed my life. One day, in a fit of self-pity, I sat down and wrote the things I can no longer do. It seems the list gets longer daily. I realize that if I do minimal standing, and I do mean minimal, I can manage the pain. Surgery is the last thing on my list. I have a medical background and this time it isn't a good thing. I know too much about what might/could/maybe result. I have heard horror stories, but I've also heard success stories. I just want my old life back, when I could do things without thinking ahead of what might be a pain trigger. I miss traveling. But the icing on the cake happened over the weekend. I wanted a hot fudge sundae at the Dairy Queen. (small place with no drive through). There were 10 people in line, one clerk working. I knew I couldn't stand in line to wait for a hot fudge fix. But that still isn't enough to make me agree to the surgery. Anyone in the group have some positive experiences with surgery? Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2011 Report Share Posted September 28, 2011 Ann, I am like you surgery is not on my list of things … I feel once they mess with my spine I will forever be worse. Do you work? So far I am trying not to let this pain rule me … I go out ... and then suffer when I get home … I wish I had something positive to say to you … hope you keep in touch … I am wishing there were local groups for support just to talk so people who have the same thing that can lend an ear and hear there stories too. Cathie From: Spinal Stenosis Treatment [mailto:Spinal Stenosis Treatment ] On Behalf Of Ann Sisley Sent: Tuesday, September 27, 2011 7:24 AM To: Spinal Stenosis Treatment Subject: newly diagnosed I've been having low back pain for several years, but since getting stuck in an airport security line for over 90 minutes in May - standing, shuffling one step at a time - with no support, the pain has really exacerbated. MRI's in past years showed disk space narrowing, but the most recent MRI confirmed the spinal stenosis. The neurosurgeon's words were simple. " You'll know when it's time. " That scares me to death. But I see how this pain has changed my life. One day, in a fit of self-pity, I sat down and wrote the things I can no longer do. It seems the list gets longer daily. I realize that if I do minimal standing, and I do mean minimal, I can manage the pain. Surgery is the last thing on my list. I have a medical background and this time it isn't a good thing. I know too much about what might/could/maybe result. I have heard horror stories, but I've also heard success stories. I just want my old life back, when I could do things without thinking ahead of what might be a pain trigger. I miss traveling. But the icing on the cake happened over the weekend. I wanted a hot fudge sundae at the Dairy Queen. (small place with no drive through). There were 10 people in line, one clerk working. I knew I couldn't stand in line to wait for a hot fudge fix. But that still isn't enough to make me agree to the surgery. Anyone in the group have some positive experiences with surgery? Ann Quote Link to comment Share on other sites More sharing options...
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