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    #61
    Regression?

    I'm curious about something...I spoke with another gentleman yesterday who had the procedure. He is urinating on his own. He is getting sensation down to the bottoms of his feet. He indicated that initially when the surgery was first done, he regressed somewhat.

    What is the likelihood of getting worse with a procedure like this one ? (myletomy?)

    Eric Texley
    Eric Texley

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      #62
      dr.young,so is dr.kao getting these axons to grow out of the injury?what is he doing that is making this happen?

      Comment


        #63
        Eric, when we spoke to this gentleman, he also said that we need to be prepaired for a regression of sorts after the operation, he said that Dr. Kao does not really bring this up and he feels it is important for everyone to know this as many have had the same thing occur. He said it lasts about a month...it would seem that he had some feelings/sensations below the injury level before the procedure and after he returned home those seemed to be gone, he was mortified to say the least...thinking that perhaps he was "more paralyzed...just my luck" he said! A call to Dr. Kao eased his mind somewhat, as he explained many had the same experiances, it will get better, be patient. Within a few wks. to a month things started getting back to what they were and better after that...Until I get to talk to Dr. Kao (who is already in Ecuador) I can't ask why this happens. The first of his 12 patients leave today ~ Gregory Perry~ and Ed Paige leaves on Tuesday. I think Gregs operation is on Monday. This gentleman we spoke to said that although he does not have full feeling to his feet he has sensations to his feet, somedays more than others. HMMMM, wonder why some days its better than others and why there seems to be a regretion of sorts after the operation...

        Comment


          #64
          Dr.Kao

          Birdie:

          I just talked to Dr. Kao. He is in his DC office and awaiting my son's MRI by Fed Exp. [img]/forum/images/smilies/cool.gif[/img]
          Jake's Pop

          Comment


            #65
            bla

            The thing is...this is a MAJOR surgery. How many surgeries like that can a person get in their lifetime? and to my knowledge nobody has recovered completely from the operation.

            Use your best judgement before you let someone do something like this...a "cure" for this stupid condition might be here already, but as a combination of existing therapies. Don't be someone's lab animal...

            Eric Texley
            Eric Texley

            Comment


              #66
              Eric, INDEED! This is MAJOR SURGERY! Again, I need to let you and everyone else know that I am not trying to push this on anyone and I would advise not to run to the phone and just call Dr. Kao on a wimm! I took 8(+/-) months checking into this as well as other things. This may not be for everyone, and that's fine. Dr. Kao will tell you straight out...A) if he feels that he may be able to offer any type of functional recovery or sensory recovery. He will tell you and has told others, if he feels that this will not offer much for you. B) he will tell you that if you are not willing to work towards this {i.e. therapy, with a positive mind set} than there is no reason for him to work towards this and no reason for you to waste your money and time. C)This is not the cure...he will be honest about that, this may offer you a more quality filled life and more control over your life. This will not affect your chances in the future when a cure does come. I respect your oppinion and the reasons for it. I admire you and others for being able to have so much faith that the worlds researchers will find this cure soon, and to be able to wait for it. Here's the thing, almost every researcher, doctor, SCI individual...they all agree for the most part, that the cure WILL not be just ONE SINGLE thing (no one magic pill, no single therapy, no single procedure...). It WILL BE a combonation of things(therapies, procedures, meds..). Now I realize that many may scoff at this, but bare with me, WHAT IF, this procedure is part of the cure? I'm not living in a fantasy land...MANY are doing exactly what Kao is doing only with a differant twist to it...the Miami Center is researching this, Dr. Cheng is doing some of this, Dr. Rafeal in Mexico is doing some of this, as well as countless others looking into and researching much of these ideas. It's a long shot perhaps, but just maybe I will be one step ahead when the cure comes...Maybe I will be one step behind...I am not sure nor are you. I have thought about this, I have read about this, I have done my homework on this. The thing about being a lab rat is that even when the cure comes...someone has to be the lab rat ( alot of someones have to be the lab rat), or we will never see the cure at all.

              Comment


                #67
                Incidentally...

                ...Dr. Kao gave me the best physical examination anyone has ever given me in about 10 minutes. For a year and four months, I've been told by the whole world (except by Dr. Brucker) that my injury was complete. Dr. Kao found a muscle, (which I ASKED about in inpatient therapy in Miami, mind you) and SHOWED me on a colorable muslce atlas where it was. We then looked it up on the internet. It is innervated FAR below my injury site. Yet the "expert" physical therapist I had told me repeatedly that it was innervated above my injury site, and I was complete...

                Don't these people have a qualifying exam or something? My therapist couldn't even pop a wheelie in a chair... Why should somebody who can't pop a wheelie be teaching me how to pop wheelies??? And in the age of ADA, WHAT IS THE POINT in teaching curbs??? Athletic stunt?

                Eric Texley
                Eric Texley

                Comment


                  #68
                  Ed Paige and his companion Teddy Lancaster will be leaving for Ecuador Tuesday to have this procedure. Perhaps you guys can all say a prayer or two for him and maybe wish him the best! His web page is: http://runningbear.com/main/Ed/text/Main-Page.html

                  Teddy's email is: Teddy@runningbear.com I'm sure Teddy will keep everyone updated on the web page, she plans to bring a laptop too!

                  Comment


                    #69
                    Interesting bit of info.

                    It would seem that the Discovery channel is interested in doing a special show on nerve transplants/regeneration and are calling Dr. Kao in Ecuador, to see if they might be able to bring a crew down there. Just got off the phone with them yesterday.

                    Comment


                      #70
                      News from Ed Paige in Ecuador...more to come

                      We finally arrived at 1AM...TIRED!!!

                      We had to change planes in Washington DC. A real hassle for someone in
                      a wheelchair. They transfer the person to THEIR wheelchair (we packed
                      up Ed's new one in a BIG cardboard box and sent it with baggage). To
                      get on the plane, he is transferred to an "aisle" chair and have to
                      CARRY him in it onto the plane. Then they have to LIFT him out of the
                      aisle chair into a seat. Time-consuming and I worried about their
                      experience. We managed with no problems, tho.

                      The flight leaving DC was delayed, something on one of the instrument
                      panels was not working, so their techs got a new part which still did
                      not fix the problem. Here we sit for an hour knowing we only have two
                      hours before boarding in Miami for Quito.

                      Then they told everyone with connecting flight to move to another
                      plane. Of course, instead of being first, Ed was last...they had him
                      half way down the plan aisle and then they announced the instrument
                      panel problem was fixed. So, 75 minutes late, we leave DC.

                      To add to the hassle, when we arrived in Miami, no gates were available,
                      so we sat on the runway waiting our turn. Our flight to Quite was
                      scheduled to leave from Gate B-12 at 7:10 PM. At 7 PM, we are told our
                      plane (from DC) was was to be the next plane IN to gate B-12 after the
                      current one left. HEY, that's OUR flight!!!

                      I was tired and cranky and worried. I was NOT prepared to take care of
                      Ed in a hotel overnight. I begged and pleaded and something worked.
                      Our plane was given gate B-6 and Ed was whisked to gate B-12 (half and
                      hour late) and we got in FIRST CLASS!!!! American Airlines said they do
                      NOT upgrade without payment, but I think it was easier for them to get
                      Ed into the bigger seats closer to the front.

                      Never having flown first class was interesting. Instead of paper cups,
                      there were glasses. Instead of plastic trays for food, there were mimi
                      table cloths, cloth napkins, real china and glassware and you are served
                      one course at a time.

                      Arrival in Ecuador was as normal as could be expected. Long lines at
                      Customs, hardly anyone who speaks english, but a handful of $1.00 bills
                      helped. Funny, American Airlines did not tell us about or give us entry
                      forms to fill out, so that was another delay.

                      Thank goodness ALL 6 of our bags and boxes arrived at the same time. It
                      took two bellboys to whisk us outside where a lovely lady, Patricia" met
                      us and escorted Ed and I to their van where everything was transferred
                      with MANY helpers (too many perhaps). In less than an hour, Ed wa sin
                      bed and I was sitting in their "smoking room" (my first cigarette in 12
                      hours) to fill out paperwork.

                      I was glad to get into bed. We woke up early (we'll need a nap later"
                      and while I was cuddled with Ed (one of the RARE moments we can hug
                      without his brace), Dr. kA came in to greet us. He was very please at
                      Ed's condition (he does look and IS MUCH healthier than 7 weeks ago when
                      Dr. kA met him). He gave his regrets that they would have to shave off
                      his beard.......

                      We have met some of the families of several other patients. The
                      hospital is OK, very busy, again, too many helpers ALL wanting to help.
                      Everyone VERY friendly.

                      More this evening.....(along with photos).

                      Off to local hospital for some special x-rays. In the morning
                      (Thursday) they are taking us to the Equator. Ed's ONLY chance to
                      tour....
                      --
                      Teddy Lancaster

                      In Ecuador until September 4th....

                      Comment


                        #71
                        from Ecuador

                        Greg, a 26 year old man from Cincinnati had surgery Monday by Dr. Kao.
                        Tonight, he moved one of his feet, the first time in several
                        years...(just TWO days after surgery!!!).

                        Much talk among the other patients' families. We are learning a LOT and convinced MORE THAN EVER that this surgery,
                        the ONLY one of it's kind (other than the doctors in China), is the answer not only for Ed, but for a great deal
                        many others.

                        VERY tired, still. Tests and check-ups by many doctors. ALL of home are
                        VERY warm, kind and caring and ALL with a smile and a BIG welcome for
                        BOTH of us.

                        I took more pictures today but am too tired to get them posted. I
                        promise in a day or so I will.
                        --
                        Teddy Lancaster

                        Comment


                          #72
                          Thursday, August 16, 2001 ***Ecuador Report***

                          The moment of truth, so to speak, is almost here. Dr. Kao reviewed all
                          Ed's x-rays and MRI's yesterday. Today, he had a consultation with us
                          which included Dr. Alarcon, the general surgeon, the assistant neuro
                          surgeon Dr. Guapa(sp). The news is very good.

                          Ed has complained of weakness on his right side, including his jaw, his
                          arms, and inability to move his neck from left to right. Dr. Kao had
                          asked that Ed have an MRI of his brain with in WV. Ed's brain has
                          absolutely no sign of ANY injury. So far the PT people and the
                          physiatrist only attempted ultra-sound on Ed's muscles. Dr. Kao has, to
                          his and our satisfaction, explained this weakness and loss of mobility.
                          He attributes it to the fact that the spinal cord itself is being "held"
                          by the compression of the bones from the spine. This kept the spinal
                          cord to not have its natural "flexion", hence, the immobility of his
                          neck. So, ultra-sound therapy was not going to do any good. Freeing up
                          the compression on his spinal cord will. Although Dr. Kao limited his
                          "agreement" with Ed to sensation to the knees as well as his regaining
                          bowel and bladder function, Dr. Kao is very pleased with the prospects
                          for Ed's future possibilities. (I.E. He feels his estimate is very
                          conservative.)

                          We feel very fortunate in having found Dr. Kao, Barbara Devine and this
                          facility. I would never see a neurosurgeon anywhere in our experience
                          voluntarily wheel a patient from the cafeteria to his room, to assist in
                          his transfers, to coordinate his meals, to attend to every detail that
                          is normally left to nurses. These people hold their patients hands, ask
                          us to express our every concern, go over every step of the procedures in
                          detail from the readings of the x-rays and MRIs, to the actual surgery
                          and finally through not only the recovery, but to be right at your side
                          throughout the therapy during your 2 week stay.

                          Ed's spine may or may not need to have pins. The judgment will be made
                          after the area is opened up and assessed in detail. I will be allowed
                          to film and record the voices of the decisions during this period. His
                          spine indeed has a 30 degree bend. Up to 35 degree is considerate
                          acceptable and not to hinder him in any way, provided that fusion is
                          complete. He was x-rayed in various positions to determine if the spine
                          had movement by the break, it did not. This indicates that there is
                          probably no need for the pins, but Dr. Kao will reserve judgment upon
                          closer inspection during surgery. The addition of the pins will add
                          about 2 hours to the surgery, already planned for ten hours.

                          Two other patients have already had surgery since our arrival. John,
                          the younger one (in his 20's) was a quadriplegic. His had surgery
                          Wednesday (yesterday). He s already moving his fingers. Greg, the man
                          from Cincinnati who had a gunshot injury to his spinal cord years ago
                          (but had no disturbance to his spine), had surgery Monday, he is able to
                          voluntarily move each of his legs. He is sitting up in bed and eating
                          normally. Both spend 2.5 hours each day in the hyberbaric chamber, as
                          will Ed.

                          It must be the elevation. Neither Ed nor I feel bad, but we are both
                          constantly tired even though we feel we are getting plenty of sleep. We
                          were driven to the Equator today. There is a large monument and a small
                          village of shops and restaurants surrounding it. I took pictures of the
                          avenue of busts of the mostly Spanish and French explorers who, 300
                          years ago, marked this spot as the "center of the earth". Of course we
                          had pictures taken which I will post later.

                          It was a long (1 hour) bumpy drive through Quito which is 30 miles south
                          of the Equator from Cumbaya where the clinic is 10 miles east of Quito.
                          The mountains remind one of California and the western USA. They are
                          Mostly bare, very steep and it is surprisingly VERY windy. I bought a
                          great many textile souvenirs at very good prices. ALL hand-made by the
                          local "indians". I want to go back next week to buy paintings. The
                          regional art is almost impressionistic, much of it very colorful and I
                          found it all very pleasing to the eye. Again, all done locally. No
                          where did anyone sell anything "made in China". The only influence I
                          see of the "outside world" are the additions of modern conveniences
                          which have been introduced by American "big business". Shell, Mobil,
                          Texaco, Goodyear, Pizza Hut, Ace Hardware, McDonalds, Pfizer.

                          As soon as I have some more time (others want to e-mail home) I will put
                          photos on the website. PROMISE!!! I have dozens and will send you the
                          best. Teddy Lancaster

                          Comment


                            #73
                            Ed's operation in Ecuador

                            Ed went into surgery at 7 AM this morning. I watched (and taped and
                            photographed) from 10:30 to 12:30 and then from 1:30 TO 4:30 when he was
                            closed up.

                            I cannot imagine ANY US hospital allowing family in the operating room,
                            much less allowing them to peer through the microscope, stand at the
                            patients head and watch as well as ask questions. I was indeed
                            privileged to be able to do so. Dr. Kao is obviously VERY experienced
                            at what he does and does it with ease, but perfectionism. His
                            assistants have all been with him for some time so the entire procedure
                            was coordinated very well and I feel went very smoothly.

                            I saw Ed is recovery 1/2 hour ago. He is obviously traumatized. It was
                            a very deep and invasive procedure which included removal of not only
                            bone fragments, but of part of the "spine of the spine"...(sorry I am
                            not more medically versed) in order to access the spinal cord.

                            The spinal cord is thicker than I realized and very well protected
                            against just about anything except major accidents like Eds. I first
                            saw the actual compressed bone (which is well fused). Dr. Kao opted NOT
                            to add pins since this area is already very stable and to insert pins
                            and screws would involve further and unwarranted trauma as well as more
                            extended recovery.

                            I have never seen an actual surgery before, so I have nothing to compare
                            with. But I did faint when I had my ears pierced, so I was not
                            surprised when I got very dizzy. I left for maybe 15 minutes to lie
                            down and decided I had to talk my way into observing as much as I
                            could. I was fine from then on, except that standing for so many hours
                            did kill my back. I would do it again in a heartbeat.

                            For those of you who are squeamish, do not look at the photos on the
                            website as they show the opened up back and spine, all the way down to
                            the spinal cord. Yes, it does look like ribs being readied for
                            BBQ......http://runningbear.com/main/Ed/text/Main-Page.html


                            I have also posted many of the photos of Quito and the Clinic itself.

                            Ed will be fine, but his body will be sore for quite awhile. He is on
                            pain medication and will be as long as necessary. He will have his
                            first 2.5 hours in the hyberbaric chamber at 1 PM tomorrow (Saturday).

                            Feel free to e-mail me back with questions. Pass this on to anyone you
                            feel is interested. This is indeed an experience to share.

                            P.S. Ed's spirits are very good.....he definitely retains his keen wit
                            and sense of humor in spite of the surgery.
                            --
                            Teddy Lancaster

                            Comment


                              #74
                              WSAZ-TV (NBC affiliate, Huntington, WV) is doing an in depth follow-up
                              story on Ed. I am gaining TONS of knowledge here to share with others who
                              find themselves in Ed's predicament.

                              Discovery Channel has already contacted Dr. Kao (while we were in
                              surgery today) and said they wanted to do a story, promising Dr. Kao
                              more publicity. It was quite a laugh in the OR as that is NOT one of
                              Dr. Kao's goals...


                              --
                              Teddy Lancaster

                              Comment


                                #75
                                Birde, Thank you for your story every day.
                                I am very excited in watching your story and Ed's recovery. I belive the God is watching him too.
                                Really hope his excellent recovery.
                                Thanks again.

                                Comment

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