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    Old 12-17-2003, 10:37 PM   #46
    Standingman1
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    Re: Post-IDET Report

    T'nut, how are you? Your fellow Lujos want to know. I'm sorry to pester you, and I assume you are going through some sort of "process" that is best done solo. I respect that. Just know that we care and look forward to hearing how things are when it is the right time for you to check in again.

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    Old 12-24-2003, 04:05 PM   #47
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    Smile Re: Post-IDET Report

    Hello Lumbar Jocks and happy holidays!

    Sorry for the longish absence. It's awefully nice to be missed, pestered, sought out - thanks for prods, SM. This past week+ has been a trial though I appear to be on the other side. As I last reported, the pain doc had put me on 15mg methadone daily. This medication did wonders for my pain but I was sleeping 14 hours a day and so they decided to try me on another long-lasting opiate and put me on oxycontin. They had me on the lowest dose of the drug and said, "see you in a week." After two days of crippling pain, I called the clinic pretty much in panic mode that the medicine was not remotely helping. They increased my dose and sent me off again. This increase helped some but not enough so I increased it myself until I got to a tolerable level of pain. Unfortunately, during all of this, I discovered that my insurance would not cover the drug and a month's supply was around $200. Yikes. So I'll be changing meds once again in a few weeks (sigh).

    In all of this, I have learned a big lesson. Instead of viewing pain medications as something that makes me "weak" or "dependent," I now see how fortunate I am to be substantially relieved by these pain medications. My darkest days emotionally are when the pain is uncontrolled. Anything that helps lift me up from the depths of this agony is a blessing and I can embrace that and still hope that someday I will be off of these medications.

    It is also true that I am unable to visualize a more functional life when I am in such pain. Even though I am propped up by meds to feel better, I am much more optimistic about the future when the pain is less oppressive. I am now 5 weeks post-IDET. I am certainly not feeling any better physically than pre-IDET, but it is hard to tell if I am worse. The real test will be in 3 weeks when I start PT. If I have a massive flare-up with gentle PT or with sitting, I will know that I am no better than when I started. But this is also very early on. Time seemed to pass so slowly over the first two weeks of this recovery, but now it seems to have picked up to normal. Being busy with work helps tremendously, though I have only the energy to work part-time. I am awed by people who return to work only weeks after surgery. There was no way I would have been able to do that commuting and going to an office.

    I have cut down on my walking. Received a pedometer as a gift and it is fun to track my progress though my starting point is pretty pathetic.

    Thank you for all the kindness, insight, and humor you have all given me during this most trying year.

    Blessings to all,

    Tennisnut

     
    Old 12-26-2003, 02:37 PM   #48
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    Re: Post-IDET Report

    [QUOTE=tennisnut]
    Sorry for the longish absence...[/QUOTE]

    Ms. Nut - thank you for checking in. I'm glad you are walking less... And you sound like a 'man (er, gal), with a plan'.

    Even though I'm not where you are, in painspeak - I am in denial (for me, not just a river in Egypt). Muscled through a fun flaring session for building a fire and opening Xmas gifts, without taking something and, in retrospect, I was the less for it. Didn't go to ice and NSAID's was robbed of holiday mirth & merriment. Pain is grueling - chews up your seritonian levels and leads down a path of despair - which is a waste of time and energy. One of my New Year's rezzie's (and I don't make 'em) is to pull the trigger on ameliorating pain earlier in the curve.

    Heal Tennis - I'm pulling and praying for ya (and all the rest of the back board alumni)...


    ~waves

     
    Old 12-26-2003, 04:50 PM   #49
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    Re: Post-IDET Report

    Hi T'nut! I wrote you a long message earlier and then got one of those banned IP things that happen once in a while. So my work was lost in cyberland.

    In any event, it's great to hear from you. Of course, I wish that you had the evil Mr. P under better control. What you say about pacing and the changing sense of time makes a lot of sense. My intuition (one of my stronger suits) says you'll get there, as long as the journey takes. I'm not a "pollyanna" but have pretty good "gut senses" about things.

    BTW, I got one of those laptop stands you recommended and it has much helped. Thanks again for your recommendation. All that standing was taking toll on hips, knees, ankles as well as lumbarland, so this gives me some positional options for working that I didn't have. (Tried a lot of other arrangements--knees, hospital tables, etc. but nothing works as well.)

    Waves--sorry you strained yourself over holiday. A recurring lesson for all of us, it seems, with enough surprises (things we somehow get away with sometimes) that the edge of the cliff, and even the downward slope, not always easy to identify. We had a bit of a plumbing disaster at our house, and I was running up and down stairs, twisting into positions I had no "right" to, etc.. I tried to be careful, but you know how that goes when the water is running.....literally. Still, somehow I ended up feeling better rather than worse afterwards. I'm wondering whether the adrenaline release brought some endorphs with it, or who knows what. I'm not ready to recommend broken pipes as a PT technique, but we'll see.

    Friends--may _all_ our pipes mellow and heal as soon as we are given the grace that they do. And may Mr. P. keep his sorry butt out of our sorry butts (and environs) as much as he and we can manage.

    Power to the Lu-jos!

    Standingman

    Last edited by Standingman1; 12-26-2003 at 05:03 PM.

     
    Old 12-26-2003, 05:08 PM   #50
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    Re: Post-IDET Report

    Me again, Dr. T. Check the depression thread recently started by Ken Hoff if you haven't. There're some very worthy reflections there, I think, especially including one by Pippin, a fellow netwoman.

    S'man

     
    Old 12-28-2003, 08:54 PM   #51
    tennisnut
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    Re: Post-IDET Report

    Hey there, LJs!

    I am hanging in there pretty well, all side effects considered. Boy, if this wasn't the quietest of all holiday seasons for me. Had visitors one day and even though I can't do much in the way of hostessing, I stood about and got up and down much too much. I got into a bit of a cappucino-making frenzy and then had to collapse. Still, what a joy to break up the monotony. Since I can't do the social thing, I've been chatting on the phone to loved ones and really appreciating the wonderful people in my life.

    Waves-Hoping you have recovered from your flare-up. What a price to pay for some harmless mirth. It seems cruel somehow. OK, we can't go out and pound our bodies into oblivion. We concede that. But building a fire? Opening presents? Who could ever think such simple pleasures would invite pain and suffering.

    SM-Your mad dash to avert household disaster was testament to the unexpected. Amazing that you could do all that and be none the worse for wear. Panic as PT. Sometimes walking down the street I wonder what I would do if in imminent danger of physical harm. I haven't run in over a year. Sometimes I think I must have forgotton how. Surely I would be able to, but what would happen to my back? Maybe nothing at all per the panic as PT theory.

    I did take a gander and puruse the "depression" thread started by Kennethhoff. Some really helpful commentary there. I think Pippin's outlook is stupendous. I aspire to adopting such a positive, growth-oriented perspective. My biggest hurdle in getting to that good place is this sense of "doom" that pervades my future outlook. I appreciate your "gut" feeling that things are going to be OK down the road for me. I'll hang on to your optimism given my utter lack of it.

    I have been out of touch and am reading back through previous posts that I meant to respond to. First, SM's vivid dream report about facing the doctors as he prepared to golf. I had a different interpretation. SM, you had this dream shortly after we began to discuss the possibility of playing our beloved sports again. You seemed to voice the position that, should you recover, you would never risk your back health again by playing golf. I wonder, though, if the "showdown" with the team of doctors & nurses didn't mean that you were toying with the idea that they might eventually advise you that it is safe to play again. After all, this is a real possibility. So instead of them sounding the alarm and talking you out of this crazy notion that you would play golf, you were actually consulting them about the possibility that you were ready to play. Of course, it was your dream. But this was my first thought after reading your retelling of it.

    I also just read the rather short note that you had a selective nerve block recently (Dec. 15). What this diagnostic or therapeutic? Any relief resulting? Inquiring minds...you know.

    Two more weeks of the damned back brace. Have a feeling am going to be in the same pickle about sitting and only can handle a wee bit at a time. But that too will afford a little more freedom. I would love to be able to sit long enough to enjoy one of the oscar contenders at the cinema. Perhaps, perhaps.

    --tennisnut

     
    Old 12-29-2003, 05:32 PM   #52
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    Re: Post-IDET Report

    T'nut--Great to hear the latest update. I really do have "intuitions" about certain things, and mine remains positive. So if putting that into your "drugs of choice" can help (maybe next to cappucino and a few others) that would be terrific. I am, indeed, a psychologist. And thus, as you know, can read minds, peer into future, call football games, etc.. Speaking of the latter, both you and Waves are in California, yes? My own employer--University of Michigan (where I teach)-- will be playing that little ole' team at USC on New Years'. If you're anywhere near Pasadena, toss a rose for me! (We'll need it!)

    Also speaking of psychologists, I loved your interpretation of my dream. Who knows? Perhaps it was a combination golf club-rehab unit!!! What a great concept--if it worked. When I was walking the course last July at our city tournament, I met a guy who, indeed, told me that golf had "cured" his back problem. He used to be stiff and sore all the time. Now that he plays golf four times per week, all that has cleared up. If I'd had my five iron, I might have let him have it! (not in the sense of loan!)

    The L3 nerve block was purely diagnostic--six hours of local anesthesia of that nerve to see whether that's the "highway" along which my main problem travels. I'd say the results were a bit ambiguous, but "suggestive." I definitely could sit longer than usual while the block was on. Overall, I'd say it took out about 75% of my usual stuff. But there were some "sparks" of pain that seemed to come from both above and below that level too. So it still leaves a certain amount of uncertainty....

    Calling friends has become a major past-time for me as well; one thing you can do lying down quite well. If I have surgery, it's those conversations that I think will help get me through the days after more than anything else. Glad you're finding that as well.

    Keep the faith (mine anyway!). Power to the Lu-Jos! And keep us updated, with or without faith too.

    Standingman

     
    Old 12-30-2003, 06:55 PM   #53
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    Re: Post-IDET Report

    You know the way I look at this anymore is that we back folks, are amoung the strong on this planet. If you have read all the postings and the pain all have and are enduring, it is monumental!!!And yet we go on with our lives, some in more limited ways, some still work. I am in awe of that.


    [QUOTE=tennisnut]Hey there, LJs!

    I am hanging in there pretty well, all side effects considered. Boy, if this wasn't the quietest of all holiday seasons for me. Had visitors one day and even though I can't do much in the way of hostessing, I stood about and got up and down much too much. I got into a bit of a cappucino-making frenzy and then had to collapse. Still, what a joy to break up the monotony. Since I can't do the social thing, I've been chatting on the phone to loved ones and really appreciating the wonderful people in my life.

    Waves-Hoping you have recovered from your flare-up. What a price to pay for some harmless mirth. It seems cruel somehow. OK, we can't go out and pound our bodies into oblivion. We concede that. But building a fire? Opening presents? Who could ever think such simple pleasures would invite pain and suffering.

    SM-Your mad dash to avert household disaster was testament to the unexpected. Amazing that you could do all that and be none the worse for wear. Panic as PT. Sometimes walking down the street I wonder what I would do if in imminent danger of physical harm. I haven't run in over a year. Sometimes I think I must have forgotton how. Surely I would be able to, but what would happen to my back? Maybe nothing at all per the panic as PT theory.

    I did take a gander and puruse the "depression" thread started by Kennethhoff. Some really helpful commentary there. I think Pippin's outlook is stupendous. I aspire to adopting such a positive, growth-oriented perspective. My biggest hurdle in getting to that good place is this sense of "doom" that pervades my future outlook. I appreciate your "gut" feeling that things are going to be OK down the road for me. I'll hang on to your optimism given my utter lack of it.

    I have been out of touch and am reading back through previous posts that I meant to respond to. First, SM's vivid dream report about facing the doctors as he prepared to golf. I had a different interpretation. SM, you had this dream shortly after we began to discuss the possibility of playing our beloved sports again. You seemed to voice the position that, should you recover, you would never risk your back health again by playing golf. I wonder, though, if the "showdown" with the team of doctors & nurses didn't mean that you were toying with the idea that they might eventually advise you that it is safe to play again. After all, this is a real possibility. So instead of them sounding the alarm and talking you out of this crazy notion that you would play golf, you were actually consulting them about the possibility that you were ready to play. Of course, it was your dream. But this was my first thought after reading your retelling of it.

    I also just read the rather short note that you had a selective nerve block recently (Dec. 15). What this diagnostic or therapeutic? Any relief resulting? Inquiring minds...you know.

    Two more weeks of the damned back brace. Have a feeling am going to be in the same pickle about sitting and only can handle a wee bit at a time. But that too will afford a little more freedom. I would love to be able to sit long enough to enjoy one of the oscar contenders at the cinema. Perhaps, perhaps.

    --tennisnut[/QUOTE]

     
    Old 01-01-2004, 10:20 AM   #54
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    Re: Post-IDET Report

    MaryAnne--I agree with what you write about the folks here. I am someone who has dealt with another chronic medical situation--in some ways, more "serious" than our back problems--and I see the same thing among my fellow travellers there. There are people everywhere, dealing with extraordinary challenges, and finding a way. It is, indeed, awesome.

    T'nut--Had another golf dream last night! I remembered it when I first woke up and made a mental note that I would retell it here. But, of course, I went back to sleep and now have lost most of the details. I _do_ recall, however, that I was playing in a group that included Tiger and Phil Mickelson!! How's that for wishful-delusional thinking!! Well, I guess we are all entitled to be loonies in our dreams; that's what dreams are for! (And there was this much sanity.....I don't think I was winning!)

    Standingman

     
    Old 01-07-2004, 06:05 PM   #55
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    Re: Post-IDET Report

    [QUOTE=Standingman1]T'nut--Had another golf dream last night! I remembered it when I first woke up and made a mental note that I would retell it here. But, of course, I went back to sleep and now have lost most of the details. I _do_ recall, however, that I was playing in a group that included Tiger and Phil Mickelson!! How's that for wishful-delusional thinking!! Well, I guess we are all entitled to be loonies in our dreams; that's what dreams are for! (And there was this much sanity.....I don't think I was winning!)

    Standingman[/QUOTE]

    SM-What a wonderful, uplifting dream. Know you, with all this talk of dreams of late, I thought about how mine have been since this living nightmare took hold.
    I don't remember most of my dreams and my sleep is so altered from the narcotics that it's tough to tell what's going on. But it has been a considerable while since I had a dream worth remembering and savoring. I do try to influence my dreams by thinking about wonderful, happy things before I sack out, but this doesn't seem to make much of a difference.

    I had another set back this week. Not with my back, thankfully, which is holding steady. The problem is with my right foot. I managed to smash my toes into the door jam about a month ago-mega ouch. The toes were a bit swollen but this subsided. But what remains is a very painful area on the bottom of my foot near the base of the toes. There is no swelling or extreme senstitivity to the touch, but the foot hurts like hell when I walk and then throbs for hours later. It's to the point where I am limping along and thinking I should be on crutches. I'll have to see a podiatrist next to figure this out. I think that I might have a stress fracture, but maybe I'm too quick to self diagnose. What is so monumentally frustrating is that this means that I can't walk, which is my only outlet and source of exercise. I just want to scream, I am so ****** off. Now, I will take a deep breath and think of MaryAnn's meditation on what strong people we are.

    -T'nut

     
    Old 01-08-2004, 02:50 PM   #56
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    Re: Post-IDET Report

    T'nut--Always great to hear from you! My condolences on your foot. I assume you're confident it's not radicular but from that accident you mentioned. What a drag--literally--wherever it's from. Presumably back meds help soften that blow as well?

    Sounds like the back situation is more or less "stable" as it was, yes? I still think you'll find improvement. I may be a "dreamer" in some respects, but not these. We'll see.

    Mostly same old, same old here as well. Using more valium than I was which certainly helps. I don't think it's because it puts me in la la land (I don't use that much) but because of the spasm aspect. Seems to help with recovery when I definiely overshoot the mark.

    No more golf dreams, sadly. I'm back to teaching which is a good distraction, whatever else. Actually, I may conduct some classes from the floor (I've done it before), and invite all the students to do the same--like a big daisy with heads meeting in center. May stimulate a better discussion than when I'm the "traffic cop", not to mention sparing the spine. I have thought of a few article titles about this new approach to pedagogy:

    "New Course is Looking Up"

    "Seminar on Solid Ground"

    "Professor Gives 'Back to School' a Whole New Meaning"

    "Classroom Strategies: Taking the Low Road."

    Whatever.

    Power to the Lu-jos,

    Standingman

     
    Old 01-09-2004, 03:09 PM   #57
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    Re: Post-IDET Report

    T'nut--Forgot to add this in last message, which may be "amusing."

    My pharmacist is a good friend and scratch golfer. He goes to Hawaii every February to hit the little round ball around. I have inscribed a Titleist with the message "HG's [my name] back problems--BE GONE!!"
    He has promised to tee it up and launch it into the Pacific Ocean. He's even told me what day and time to expect "splashdown."

    So the question is: Do bizarre rituals and magical incantations count as "conservative" therapy? And what if you used voodoo, for example. Would that be considered "non-invasive," assuming you were not the doll?

    Inquring minds want to know.

    Standingman

     
    Old 01-11-2004, 07:50 AM   #58
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    Re: Post-IDET Report

    [QUOTE=Standingman1] Inquiring minds want to know... Standingman[/QUOTE]

    Just checking in. Been having good days & bad. Box remains about the same, tho' I like to fool myself I'm doing better...

    Wanted to thank you for your even handed contributions on the board, Mr. Man. I've found myself checking in less because - well - the stories are just so hard. I don't know where I'm going on this path but when you troll back boards, it don't sound good. And I'm working hard at remaining optimistic my conservative routine will get me somewhere, someday. So I troll less... (but think of everyone no less).

    Speaking of trolling those boards; I can't believe the degree to which ADR patients are recovering. Take T'Nut's IDET, for example. She's still on morphine (and not at all unusual: hard to find IDET success story's). Lami's, Fusion - they all seem to be equal part medicine and witchcraft with their 50 to 70% success ratio. Yet, many of these ADR folk seem to be recovering on less med's...

    Where the hell is the FDA on ADR in the US?


    ~waves

    Last edited by moderator2; 01-11-2004 at 07:53 PM.

     
    Old 01-11-2004, 09:12 AM   #59
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    Re: Post-IDET Report

    Hey, Waves--Good to hear from you too! Of course, I understand what you mean about trolling and mood. Also about trying to "find improvement" but not always being sure what one has, in fact, found. I have also "hung in" with the "conservative route" so far (with the exception of my magical rituals), but I certainly feel the temptation to "roll the dice." Keep me out of Las Vegas!

    I've done a fair amount of work relating to other FDA issues, and--in general--my take is that, overall, they are more likely to be pressured into premature approval (by relevant industry) than unduly delayed. But I don't know anything specific about the ADR story. I assume the successes you're reading about are people who've gone outside the U.S. for the surgery?

    Inquiring minds......once again.

    Keep the faith,

    Standingman

    Last edited by moderator2; 01-11-2004 at 07:54 PM.

     
    Old 01-11-2004, 07:06 PM   #60
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    Re: Post-IDET Report

    Waves, good to hear from you!

    I'm sure well all can relate to the struggles with pessimism and frustration at our options. I'm committed to letting my body heal as best it can, and delaying invasive procedures until they are a last resort. But my last resort could be coming very soon. Certainly, if I am not any improved a year from IDET, I will be getting an arficial disc. I suppose the good news is that I am an excellent candidate for this procedure. Even with IDET's 50-50 odds for me (and 70-30 at best), I thought it worth a shot because there is a reasonable chance that it will allow me to avoid major surgery. I certainly haven't given up on IDET and am comforted by the fact that regular icing of my back greatly improves my pain. To me, this means that much of my pain is due to inflammation from the IDET that hasn't yet calmed.

    I have engaged in periodic research re. ADR, whether it is on these boards or other sites. I have a lot of mixed feelings about it, but it very well could end up in my future. The prodisc clinical trials that began in 2001 should be ready for data analysis this year. I imagine that we will see FDA approval sometime in 2004, but I've done an exhaustive web search and haven't found any more concrete information. Perhaps you will recall that I was offered the prodisc in 2003 because UCSF is a study site. The orthopedic surgeon (who was highly regarded) had done a total of 5 of the ADRs. He told me that I would be playing tennis in 3 months after the ADR. Well, you can imagine how tempting that sounded. Pain free, doing everything I had done before. At the same time, I was terrified. I have never had major surgey and it scares the daylights out of me, particularly something this involved. But my biggest concern is how long the artificial disc will last. Once the disc is in, it is very difficult to get out (at least the prodisc is) and involves even greater risk than the original surgery. Even with all of the unknowns and risks involved, I know that I will take the risk to improve the quality of my life should the choice come to this.

    You are in the very frustrating limbo land. Still waiting for the pelvic surgery to heal and then to see how much trouble your back will be. Seems to me that you've got a ways to do before thinking about another major surgery. Are you feeling differently? I thought the last doc you saw thought your disc was going through normal degeneration and likely wasn't the source of your pain. Did I miss something?

    Even with all the stories about failed surgeries, I know that there are lots of people who have had tremendous benefit. When I talk about my troubles, I hear more and more of these stories from other people. Obviously, it is us poor "not yet healed" that are on the boards, looking for answers, support, hope. All the surgeons I spoke with in my quest for options felt that ADR was going to be the standard of care without the next 10 years. But they also were clear that they wanted more data before leaping into it. Of course, it would be lovely to wait until all the data are in, but most of us do not have the luxury of doing that.

    Early on in this health nightmare, I poured over everything I could find to try to understand what was happening with me and what to do. I began obsessed and would spend 5 hours a day on the Internet looking for answers. Now that I have a lot of that information, have had all the tests, I try not to spend much too time thinking about what to do and just focus on coping within my current limitations.

    Don't know if any of this is helpful, but I sure do know where you're coming from.

    T'nut

    [QUOTE=waves2ya]Just checking in. Been having good days & bad. Box remains about the same, tho' I like to fool myself I'm doing better...

    Wanted to thank you for your even handed contributions on the board, Mr. Man. I've found myself checking in less because - well - the stories are just so hard. I don't know where I'm going on this path but when you troll back boards, it don't sound good. And I'm working hard at remaining optimistic my conservative routine will get me somewhere, someday. So I troll less... (but think of everyone no less).

    Speaking of trolling those boards; I can't believe the degree to which ADR patients are recovering. Take T'Nut's IDET, for example. She's still on morphine (and not at all unusual: hard to find IDET success story's). Lami's, Fusion - they all seem to be equal part medicine and witchcraft with their 50 to 70% success ratio. Yet, many of these ADR folk seem to be recovering on less med's...

    Where the hell is the FDA on ADR in the US?


    ~waves[/QUOTE]

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