Loading ...
Sorry, an error occurred while loading the content.

RE: [Arachnoiditis] Arachnoiditis via failed epidural injection

Expand Messages
  • Heidi Monson
    I must agree with everything Sara Ann has written, and that includes Dr. Aldrete s book on arachnoiditis, though I must warn you that it s a very difficult and
    Message 1 of 10 , Jul 7, 2005
    • 0 Attachment
      I must agree with everything Sara Ann has written, and that includes Dr. Aldrete's book on arachnoiditis, though I must warn you that it's a very difficult and dense read.  However, it has the most accurate and complete info available.  Plus, he tells it like it is - an amazing thing in a physician - about the causes of arachnoiditis.  He puts the blame precisely where it belongs, on the medical profession.  This man has, quite literally, put his significant professional standing on the line for people with arachnoiditis.  (He developed the quick assessment system used by most anesthesiologists to determine a patient's stability after surgery.)
       
      Arachnoiditis is the deep, dark secret of the medical world.  They pretend, and many probably believe, that it's very rare.  That is far from the truth.  As Dr. Aldrete is honest about, the term "failed back surgery syndrome" (FBSS), a common diagnosis by neurologists and neurosurgeons, which they'll indicate means simply that the surgery failed, actually means arachnoiditis.  Now, when you add to that the fact that a minimum of 15% of all spinal surgeries end in FBSS - according the the doctors' own estimates - then you know that the number of people with arachnoiditis is truly huge - in the many thousands.  And that doesn't include all the other causes, such as epidurals and myelograms.  I've become aware of only two people who developed the disease from other causes, and one I suspect may actually have gotten it from medical procedures after the injury.
       
      I don't know if a misplaced epidural is necessarily catastrophic, but I do know that it CAN be, and believe that any doctor who does the procedure without first informing of the risks and allowing the patient to make a personal decision about whether to proceed should be prosecuted for attacking another human with deadly force.  Of course, that would put a lot of doctors in prison, but frankly, I think that's where many - if not most - belong.
       
      It's amazing, though, how many people don't want to know, and that, I think, is a big reason that doctors get away with it.  We seem to have been very well trained to allow doctors to do as they choose without questioning.  And, of course, if we do question them or, heaven forbid, point out that the info they're giving is wrong, the response tends to be most unpleasant, or simply an outright lie.
       
      Sorry.  This subject gets me going, and I'd better stop before I really get started.
       
      -- Heidi
       
      -----Original Message-----
      From: Arachnoiditis@yahoogroups.com [mailto:Arachnoiditis@yahoogroups.com]On Behalf Of saraann7@...
      Sent: Thursday, July 07, 2005 9:16 AM
      To: Arachnoiditis@yahoogroups.com
      Subject: [Arachnoiditis] Arachnoiditis via failed epidural injection


      Dear Lori,

      I have arachnoiditis from several failed attempts at epidural anesthesia, dural puncture, and injection of lidocaine into my spinal nerves. As "rare" as the anesthesia profession would like us to believe that this is, it isn't so very rare. I have personally met three or four people already with a very similar problem. I feel that the chances of this happening would be about zero if the phenomena is as rare as they would like us to believe. What is more likely is that it is very rarely reported.

      There is a book on Arachnoiditis by an anesthesiologist named Dr. Antonio Aldrete that you might find helpful. He describes the mechanism of injury by failed epidural. If you had to have an epidural blood patch to plug a dural leak, the blood they had to inject to plug the leak can drift into your spinal fluid and also cause arachnoiditis. Stopping a dural leak is essential because death can result from unabated spinal fluid leaks.

      I read nothing that tells me that an epidural steroid injection that is injected past the dura by mistake can be anything but a catastrophe. Arachnoiditis is a documented risk of injection of the steroid into the subarachnoid space. I feel everyone who is lined up for epidural steroid injections could benefit from having a conversation with someone living with arachnoiditis from misplaced epidural steroid injections.

      The other thing that is important is use of flouroscopy - it cuts the error rate of epidural placement down to almost zero. Isn't hindsight wonderful. The sad thing is that all too often, we don't get the benefit of that knowledge when it could have helped us.

      I am sorry to hear that you are also living with this. You are right - the appropriate focus is on living and on getting as much of a life back as possible. Some days this is easier than others.

      There are some wonderful people on this list and I wish you well as you meet them.

      Kind regards,

      Sara Ann









      -- Arachnoiditis@yahoogroups.com wrote:
      There is 1 message in this issue.

      Topics in this digest:

            1. Another New Member
                 From: "blackmonangel" <blackmonangel@...>


      ________________________________________________________________________
      ________________________________________________________________________

      Message: 1        
         Date: Wed, 06 Jul 2005 16:01:56 -0000
         From: "blackmonangel" <blackmonangel@...>
      Subject: Another New Member

      Hello all,

      My name is Lori, and I am new to Arachnoiditis.  Actually today I am
      able to sit at the computer longer than normal,but I know I will be
      paying for it later..
      I dont really know where to start.  I had an emergency c-section 19
      years ago when the epidural was injected, he missed several
      times...and after all that it didnt work.  I was put under and the
      baby was delivered.  Then in 1990 I had my second c-section..I
      explained that the first one did not work..but they were persistant
      on giving me another one..they missed again several times..and it did
      not work..they put me under again.. I had extreme back pain where the
      shot was given after the first time then ..way worse after the
      second..the my back got so much worse..and I started having many
      other symptoms..spasms started in my back..and spread through out my
      entire body.  I get numbness in my legs.  My toes sometimes turn blue
      purple..I am always very hot when everyone one else is cold.  In 2001
      I was told I had Fibromyalgia..end of story.  But for some reason I
      just wanted my life back and never beleived that this is what I
      have.  There has to be a connection..I just know it.  I was given 5
      yes 5 steroid injections epidurals in the same area where my
      epidurals were from the c-sections..and it got even worse..When my
      back starts to hurt in the spine right where the shots were given,
      then i start to tense up and the sever spasms start up and I am done
      for the day.  I am not able to work..not since 2000.  Now I have not
      life, doing daily chores seem almost impossible..
      Any input would be greatly appreciated.
      Take care,
      Lori




      ________________________________________________________________________
      ________________________________________________________________________



      ------------------------------------------------------------------------
      Yahoo! Groups Links




      ------------------------------------------------------------------------

    • Don Goeglein
      Heidi, Hi, Don here. I agree with you about Dr. Aldrete. I saw him myself a few years ago for a 6 hour office visit / physical and he is one to not let any
      Message 2 of 10 , Jul 7, 2005
      • 0 Attachment
        Heidi,
        Hi, Don here. I agree with you about Dr. Aldrete. I saw him myself a few years ago for a 6 hour office visit / physical and he is one to not let any stone not be looked under. He helped me so much & got me on the right track and in line to see Doctors that he knew in my area. He called them about me and worked up a treatment plan for me when I was at my lowest point ever.
         God Bless You,
        Don & Jeanie


        Donald R. Goeglein "( Big D)"


        Discover Yahoo!
        Get on-the-go sports scores, stock quotes, news & more. Check it out!
      • Heidi Monson
        I am so glad to hear that! That s the one thing about Aldrete that I didn t know - whether he treated individual patients well. I ve spoken with him on the
        Message 3 of 10 , Jul 7, 2005
        • 0 Attachment
          I am so glad to hear that!  That's the one thing about Aldrete that I didn't know - whether he treated individual patients well.  I've spoken with him on the phone and appreciated him and what he's doing more than ever as a result.  That he's been willing to put his neck on the line is truly amazing.
           
          I do not believe that there is another doctor out there who has done a fraction of what he has.  The one other in the US who is well known and supposedly expert on arachnoiditis is the one I, unfortunately, saw.  And my view of him is - well, let's say that calling him a blood-sucking scum would be too kind.  The man preys on arachnoiditis patients, charging $1,000 (2-1/2 years ago) before he'll let them walk in the door.  And he does not accept insurance for those visits, though he does accept it for everything else.  And he spends a maximum of one hour (no more than 20 minutes with me).  And he even sees ones for whom he already has information that he knows he won't treat.  (In my case, he had been informed that I had a pump, and the first thing he told me was that he would do nothing for me because of it.)
           
          Oh yeah - he even refused to acknowledge the obvious cause of my disease, the surgery - saying that it could have been meningitis, a disease I've never had. 
           
          It is so good to know that Dr. Aldrete is as good with individual patients as he is for us as a group.  He is a genuine crusader, a man I admire greatly.  Thank you so much, Don and Jeanie, for letting me know about your experience with him.  Perhaps it seems strange to be so tickled, but I've been vilified over and over for expressing my very positive impression of him and trying very hard to warn others about that other so-called expert who preys on us.
           
          -- Heidi
           
          -----Original Message-----
          From: Arachnoiditis@yahoogroups.com [mailto:Arachnoiditis@yahoogroups.com]On Behalf Of Don Goeglein
          Sent: Thursday, July 07, 2005 3:05 PM
          To: Arachnoiditis@yahoogroups.com
          Subject: RE: [Arachnoiditis] Heidi

          Heidi,
          Hi, Don here. I agree with you about Dr. Aldrete. I saw him myself a few years ago for a 6 hour office visit / physical and he is one to not let any stone not be looked under. He helped me so much & got me on the right track and in line to see Doctors that he knew in my area. He called them about me and worked up a treatment plan for me when I was at my lowest point ever.
           God Bless You,
          Don & Jeanie


          Donald R. Goeglein "( Big D)"


          Discover Yahoo!
          Get on-the-go sports scores, stock quotes, news & more. Check it out!

        • Don Goeglein
          Heidi, thank you for the crusade style stuff that you are doing to help others. You are admired by a lot of us. Keep it up no matter what people try to say,
          Message 4 of 10 , Jul 7, 2005
          • 0 Attachment
            Heidi,
            thank you for the crusade style stuff that you are doing to help others. You are admired by a lot of us. Keep it up no matter what people try to say, Right is Right & Wrong is Wrong. It is that simple.
            Bless you. Don & Jeanie
            PS What area do you live in? We are  in St, Louis Mo.


            Donald R. Goeglein "( Big D)"


            Yahoo! Mail for Mobile
            Take Yahoo! Mail with you! Check email on your mobile phone.
          • Heidi Monson
            Thank you so very much for the kind comments. Until a month ago, I lived in Oregon. Now, I live in London, England. I got utterly fed up with the US, most
            Message 5 of 10 , Jul 8, 2005
            • 0 Attachment
              Thank you so very much for the kind comments. 
               
              Until a month ago, I lived in Oregon.  Now, I live in London, England.  I got utterly fed up with the US, most especially its medical system.
               
              Yesterday was the first day that my husband and I had the time and felt up to playing tourist.  Fortunately, we slept in, because the bombs went off in the area we were headed to, so they happened before we left the house.
               
              I am something of a crusader, but have learned - very much the hard way - that it isn't something that many people, including the sufferers, really want.  People seem to want to be comforted and just trust those who are in authority, at least, that's true in the US.  That, though, is precisely how nearly everyone on this list ended up in the condition they're in - including me.  So, no more.  I insist on doing the research, making hard decisions about what's true and isn't, and telling the truth.
               
              -- Heidi
               
               
              -----Original Message-----
              From: Arachnoiditis@yahoogroups.com [mailto:Arachnoiditis@yahoogroups.com]On Behalf Of Don Goeglein
              Sent: Thursday, July 07, 2005 8:27 PM
              To: Arachnoiditis@yahoogroups.com
              Subject: RE: [Arachnoiditis] Heidi

              Heidi,
              thank you for the crusade style stuff that you are doing to help others. You are admired by a lot of us. Keep it up no matter what people try to say, Right is Right & Wrong is Wrong. It is that simple.
              Bless you. Don & Jeanie
              PS What area do you live in? We are  in St, Louis Mo.


              Donald R. Goeglein "( Big D)"


              Yahoo! Mail for Mobile
              Take Yahoo! Mail with you! Check email on your mobile phone.

            • Brent Ryther
              Don, I have nothing against Heidi, in fact she and I have emailed a bunch already, but how can you be so two faced. Keith, GoldenEagle was more passionate
              Message 6 of 10 , Jul 8, 2005
              • 0 Attachment
                Message
                Don, I have nothing against Heidi, in fact she and I have emailed a bunch already, but how can you be so two faced.   Keith,  GoldenEagle was more passionate about helping people than anyone, and you constantly trashed him.  You need to find another home.
                -----Original Message-----
                From: Arachnoiditis@yahoogroups.com [mailto:Arachnoiditis@yahoogroups.com] On Behalf Of Don Goeglein
                Sent: Thursday, July 07, 2005 9:27 PM
                To: Arachnoiditis@yahoogroups.com
                Subject: RE: [Arachnoiditis] Heidi

                Heidi,
                thank you for the crusade style stuff that you are doing to help others. You are admired by a lot of us. Keep it up no matter what people try to say, Right is Right & Wrong is Wrong. It is that simple.
                Bless you. Don & Jeanie
                PS What area do you live in? We are  in St, Louis Mo.


                Donald R. Goeglein "( Big D)"


                Yahoo! Mail for Mobile
                Take Yahoo! Mail with you! Check email on your mobile phone.

              • Heidi Monson
                MessageSorry, but I must definitely side with Don on this - and I m really shocked that anyone would try to attack someone for supporting one person while not
                Message 7 of 10 , Jul 9, 2005
                • 0 Attachment
                  Message
                  Sorry, but I must definitely side with Don on this - and I'm really shocked that anyone would try to attack someone for supporting one person while not supporting another. 
                   
                  As the person who clearly was the reason for GoldenEagle's leaving, I can tell you what the difference is.  I do my own thinking.  I've done a great deal of research.  I'm familiar with all three of the well-known experts in the field - Aldrete, Burton, and Smith.  The arguments I make are my own, not simply rehashes of what so-called experts put forth or just endless cut'n'paste.  And I support them.  I don't simply send endless quotes from websites.
                   
                  Passion for a cause is not worthwhile when it isn't focused on the truth.  GoldenEagle left when the statements he made were questioned by me, and he simply was offended when I argued against what he stated and refused to allow him to attack me personally, rather than my arguments.  He was incapable of supporting the points he made, so he left, rather unpleasantly attacking the way this group is managed.
                   
                  Please, do not attack another person for a difference of opinion.  Perhaps simply asking why the support of one person and the disagreement with another would have been a better approach.  That's real discourse, rather than personal attack.  I honestly don't think that the intent here was to make an attack, but that is the effect of the words chosen.
                   
                  Remember, differences of opinion are okay.  If we didn't have them, we'd never have progressed in the field of science or ever learn to understand anything.  It's the way in which we handle those differences that matters.
                   
                  -- Heidi
                   
                  -----Original Message-----
                  From: Arachnoiditis@yahoogroups.com [mailto:Arachnoiditis@yahoogroups.com]On Behalf Of Brent Ryther
                  Sent: Friday, July 08, 2005 7:09 PM
                  To: Arachnoiditis@yahoogroups.com
                  Subject: RE: [Arachnoiditis] Heidi

                  Don, I have nothing against Heidi, in fact she and I have emailed a bunch already, but how can you be so two faced.   Keith,  GoldenEagle was more passionate about helping people than anyone, and you constantly trashed him.  You need to find another home.
                  -----Original Message-----
                  From: Arachnoiditis@yahoogroups.com [mailto:Arachnoiditis@yahoogroups.com] On Behalf Of Don Goeglein
                  Sent: Thursday, July 07, 2005 9:27 PM
                  To: Arachnoiditis@yahoogroups.com
                  Subject: RE: [Arachnoiditis] Heidi

                  Heidi,
                  thank you for the crusade style stuff that you are doing to help others. You are admired by a lot of us. Keep it up no matter what people try to say, Right is Right & Wrong is Wrong. It is that simple.
                  Bless you. Don & Jeanie
                  PS What area do you live in? We are  in St, Louis Mo.


                  Donald R. Goeglein "( Big D)"


                  Yahoo! Mail for Mobile
                  Take Yahoo! Mail with you! Check email on your mobile phone.

                • Brent Ryther
                  Heidi, you are not the reason Keith left and neither (or you may pronounce it Nyther now that you live in London) is Don. Keith wanted to join a moderated
                  Message 8 of 10 , Jul 11, 2005
                  • 0 Attachment
                    Message
                    Heidi, you are not the reason Keith left and neither (or you may pronounce it "Nyther" now that you live in London) is Don.  Keith wanted to join a moderated forum that was focused.  He did not like Cofwa, for many of the same reasons as the rest of us.  He found a forum he liked, and went to it.
                     
                    I apologize to all for attacking Don.  I am sorry Don, I should not attack you as I did, if I had something to say, it should have been privately said.  This was just a knee-jerk reaction, the kind that are so easy to have when you are simply typing, not talking to someone face to face.  Again, I apologize to Don, and to everyone else whom I may have offended.  This forum is the improper place for that type of thing. 
                     
                    Thanks for your time and patience,
                     
                    Brent
                     
                    -----Original Message-----
                    From: Arachnoiditis@yahoogroups.com [mailto:Arachnoiditis@yahoogroups.com] On Behalf Of Heidi Monson
                    Sent: Saturday, July 09, 2005 4:39 AM
                    To: Arachnoiditis@yahoogroups.com
                    Subject: RE: [Arachnoiditis] Heidi

                    Sorry, but I must definitely side with Don on this - and I'm really shocked that anyone would try to attack someone for supporting one person while not supporting another. 
                     
                    As the person who clearly was the reason for GoldenEagle's leaving, I can tell you what the difference is.  I do my own thinking.  I've done a great deal of research.  I'm familiar with all three of the well-known experts in the field - Aldrete, Burton, and Smith.  The arguments I make are my own, not simply rehashes of what so-called experts put forth or just endless cut'n'paste.  And I support them.  I don't simply send endless quotes from websites.
                     
                    Passion for a cause is not worthwhile when it isn't focused on the truth.  GoldenEagle left when the statements he made were questioned by me, and he simply was offended when I argued against what he stated and refused to allow him to attack me personally, rather than my arguments.  He was incapable of supporting the points he made, so he left, rather unpleasantly attacking the way this group is managed.
                     
                    Please, do not attack another person for a difference of opinion.  Perhaps simply asking why the support of one person and the disagreement with another would have been a better approach.  That's real discourse, rather than personal attack.  I honestly don't think that the intent here was to make an attack, but that is the effect of the words chosen.
                     
                    Remember, differences of opinion are okay.  If we didn't have them, we'd never have progressed in the field of science or ever learn to understand anything.  It's the way in which we handle those differences that matters.
                     
                    -- Heidi
                     
                    -----Original Message-----
                    From: Arachnoiditis@yahoogroups.com [mailto:Arachnoiditis@yahoogroups.com]On Behalf Of Brent Ryther
                    Sent: Friday, July 08, 2005 7:09 PM
                    To: Arachnoiditis@yahoogroups.com
                    Subject: RE: [Arachnoiditis] Heidi

                    Don, I have nothing against Heidi, in fact she and I have emailed a bunch already, but how can you be so two faced.   Keith,  GoldenEagle was more passionate about helping people than anyone, and you constantly trashed him.  You need to find another home.
                    -----Original Message-----
                    From: Arachnoiditis@yahoogroups.com [mailto:Arachnoiditis@yahoogroups.com] On Behalf Of Don Goeglein
                    Sent: Thursday, July 07, 2005 9:27 PM
                    To: Arachnoiditis@yahoogroups.com
                    Subject: RE: [Arachnoiditis] Heidi

                    Heidi,
                    thank you for the crusade style stuff that you are doing to help others. You are admired by a lot of us. Keep it up no matter what people try to say, Right is Right & Wrong is Wrong. It is that simple.
                    Bless you. Don & Jeanie
                    PS What area do you live in? We are  in St, Louis Mo.


                    Donald R. Goeglein "( Big D)"


                    Yahoo! Mail for Mobile
                    Take Yahoo! Mail with you! Check email on your mobile phone.

                  • Heidi Monson
                    MessageIt must, then, have been a coincidence. He was clearly upset with me at the time, and it s happened before, so I assumed - bad thing to do, of course -
                    Message 9 of 10 , Jul 11, 2005
                    • 0 Attachment
                      Message
                      It must, then, have been a coincidence.  He was clearly upset with me at the time, and it's happened before, so I assumed - bad thing to do, of course - that it was because of me.
                       
                      I appreciate anyone who can issue a genuine apology.  My hat is off to you, Brent.
                       
                      By the way, I have always said "nyther".  No idea why - maybe it was soaked in from the bathwater when I was a baby?
                       
                      Hmm. . .I didn't know that others here also have a problem with Cofwa.  Definitely not an outfit that I like or trust.
                       
                      -- Heidi
                       
                       
                      -----Original Message-----
                      From: Arachnoiditis@yahoogroups.com [mailto:Arachnoiditis@yahoogroups.com]On Behalf Of Brent Ryther
                      Sent: Monday, July 11, 2005 11:18 AM
                      To: Arachnoiditis@yahoogroups.com
                      Subject: RE: [Arachnoiditis] Heidi

                      Heidi, you are not the reason Keith left and neither (or you may pronounce it "Nyther" now that you live in London) is Don.  Keith wanted to join a moderated forum that was focused.  He did not like Cofwa, for many of the same reasons as the rest of us.  He found a forum he liked, and went to it.
                       
                      I apologize to all for attacking Don.  I am sorry Don, I should not attack you as I did, if I had something to say, it should have been privately said.  This was just a knee-jerk reaction, the kind that are so easy to have when you are simply typing, not talking to someone face to face.  Again, I apologize to Don, and to everyone else whom I may have offended.  This forum is the improper place for that type of thing. 
                       
                      Thanks for your time and patience,
                       
                      Brent
                       
                      -----Original Message-----
                      From: Arachnoiditis@yahoogroups.com [mailto:Arachnoiditis@yahoogroups.com] On Behalf Of Heidi Monson
                      Sent: Saturday, July 09, 2005 4:39 AM
                      To: Arachnoiditis@yahoogroups.com
                      Subject: RE: [Arachnoiditis] Heidi

                      Sorry, but I must definitely side with Don on this - and I'm really shocked that anyone would try to attack someone for supporting one person while not supporting another. 
                       
                      As the person who clearly was the reason for GoldenEagle's leaving, I can tell you what the difference is.  I do my own thinking.  I've done a great deal of research.  I'm familiar with all three of the well-known experts in the field - Aldrete, Burton, and Smith.  The arguments I make are my own, not simply rehashes of what so-called experts put forth or just endless cut'n'paste.  And I support them.  I don't simply send endless quotes from websites.
                       
                      Passion for a cause is not worthwhile when it isn't focused on the truth.  GoldenEagle left when the statements he made were questioned by me, and he simply was offended when I argued against what he stated and refused to allow him to attack me personally, rather than my arguments.  He was incapable of supporting the points he made, so he left, rather unpleasantly attacking the way this group is managed.
                       
                      Please, do not attack another person for a difference of opinion.  Perhaps simply asking why the support of one person and the disagreement with another would have been a better approach.  That's real discourse, rather than personal attack.  I honestly don't think that the intent here was to make an attack, but that is the effect of the words chosen.
                       
                      Remember, differences of opinion are okay.  If we didn't have them, we'd never have progressed in the field of science or ever learn to understand anything.  It's the way in which we handle those differences that matters.
                       
                      -- Heidi
                       
                      -----Original Message-----
                      From: Arachnoiditis@yahoogroups.com [mailto:Arachnoiditis@yahoogroups.com]On Behalf Of Brent Ryther
                      Sent: Friday, July 08, 2005 7:09 PM
                      To: Arachnoiditis@yahoogroups.com
                      Subject: RE: [Arachnoiditis] Heidi

                      Don, I have nothing against Heidi, in fact she and I have emailed a bunch already, but how can you be so two faced.   Keith,  GoldenEagle was more passionate about helping people than anyone, and you constantly trashed him.  You need to find another home.
                      -----Original Message-----
                      From: Arachnoiditis@yahoogroups.com [mailto:Arachnoiditis@yahoogroups.com] On Behalf Of Don Goeglein
                      Sent: Thursday, July 07, 2005 9:27 PM
                      To: Arachnoiditis@yahoogroups.com
                      Subject: RE: [Arachnoiditis] Heidi

                      Heidi,
                      thank you for the crusade style stuff that you are doing to help others. You are admired by a lot of us. Keep it up no matter what people try to say, Right is Right & Wrong is Wrong. It is that simple.
                      Bless you. Don & Jeanie
                      PS What area do you live in? We are  in St, Louis Mo.


                      Donald R. Goeglein "( Big D)"


                      Yahoo! Mail for Mobile
                      Take Yahoo! Mail with you! Check email on your mobile phone.

                    Your message has been successfully submitted and would be delivered to recipients shortly.