Announcement

Collapse
No announcement yet.

Taiwan

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Taiwan

    Greetings from the lobby of the KG Landmark Hotel in Tao Yuan, near Taipei. In no particular order, here's what's been happening:

    I am now 9 days post-surgery, 2 days after discharge from the hospital. Due to acceptable and unacceptable screw-ups concerning how much time I was told to be here versus how long I needed to be here, I have 6 days to wait until I leave for home, this Wed. Long story short, I was told 5 weeks with rehab, I compromised at 4, and quickly found I only really needed 2. No sense hanging out in Taiwan braving nightmarish cab rides going back and forth to the hospital each day for therapy I can do at home. You hope to learn through these things, if anything.

    As I sit here, I am in considerable pain, struggling with a flu I picked up at the hospital (dirtiest places in the world outside garbage dumps) and a raging bladder infection (thank God I brought the Levaquin!). I am leaking like crazy, got that fish smell on me but will hang here until it's time to go upstairs. This hotel, by the way, has been good enough to purchase a shower commode for me and take out the bathroom door so I can enter. David Liu runs the place, 5 star, everything you need and more, I recommend it. (011-886-03-337-0888)

    First some good news: in meeting with Cheng, though he considered initial motor movements good psychological signs for the patient, his real concern was for 'deep burning pain' in the lower extremities, a sign of success and some level of sure recovery. The day after surgery, man, that pain was everywhere and increasing, though nothing motor. Spirits rising, Wednesday night lying in bed and concentrating as Cheng has suggested on making myself move, ignoring the constant involuntary stuff, I startled myself by moving my left big toe, feeling it and seeing it happen as I focused. Tried to repeat it for the next few minutes with no luck, but the next morning, I did it again. Unfortunately, I am now so zapped from fatigue, sickness, bladder and pain that I'm not working every 15 minutes from each hour as I should, but give me some recovery from the chills and aches and I will. All that matters is I have a spark, some hope, a beginning. Yeah, I can't kick over my 600, yet, but there's hope.

    Time-line:
    Got into town Sunday night, cab ride to the hospital, confusion finding my room but got situated. Met with Cheng early the next day, then had a conference with him, his staff and the english speaking secretary, Jennifer. Cheng reviewed my charts, expressing the added difficulty he faced at the old-school Harrington rod technique used on me post-injury and how the bone graft 'turtleback' technique used by my doctor had caused the bone to fuse to metal, complicating everything. He would overcome it, though, then went on to tell me of the risk of death and infection, which I was relieved to find were really little more than 5%. He said I should look for some eventual bowel and bladder return, along with sensory, but that motor, due to being chronic complete, was a longshot for now under this treatment. No problem, I was here to get what I could, if nothing else the metal from my back at considerably less cost than in the US.
    He also mentioned several anecdotal reports of acute patients with great success, then added how a man injured 14 years, stab wound complete, moved his toes the day after surgery. In Cheng's view, acutes can almost immediately be healed, chronics the real problem; stab wounds are the easist to treat, contusions like mine harder but do-able, yet gunshot wounds offer almost no hope of recovery.

    Surgery scheduled or Thursday, I spent the next couple days taking a battery of tests I should/could have had done and brought with me from home. Another thing to know: bring all tests with you. Afternoons, my wife and I went into the Shih-pai market area and sampled street food and took in the local color. People were very friendly and helpful, but as mkowlaski has said, plegics face a nightmare trying to get around, you damn near get killed by the constant car and scooter traffic, and sidewalks and ramps just aren't. Anyone planning to travel alone be advised: bring help!

    Surgery at 7am, 11 hours later I woke post-op, out of my mind, dying for breath and whizzing in and out of consciousness. This would last the whole of the next day, the scenes, voices, images coming and going until I became more stable. Yes, morphine does knock out the pain, but the images that attend that bastard, man, how anyone can willingly put that beast into their bodies is beyond me. I was comfortable in a sense with the initial pain but went right to work reaching and pulling with my arms, moving about in order to get up from bed asap. I knew my next biggest obstacle would be doing pressure releases once up, so I'd better be ready. Out of bed Monday, couldn't actually get my butt off the seat, pain unreal, but by Tuesday morning, with no nauseating IV to drag around, I was up off the seat and moving on my own, increasing and more consistent 'deep burning pain' leading me on. By Thursday, Cheng released me to a local hotel. I'll have stitches removed and xrays the day after I return home. (He stitches rather than staples for a host of reasons; conversely, he expressed disgust at the old-school techniques post-injury still being employed. 'You come from the First World and they treat you like this?' I felt almost guilty).

    The procedure:
    Cheng opened me and removed all but some posts and wires of my instrumentaion, which had gotten fused to the bone. Then he opened the spine
    (I have slides his staff gave me), reached the dura, decompressed the area, found and removed an arachnoid cyst and some clotted blood, then injected his growth factors before closing me up; I was not in need of the peripheral nerve bridge, as I had no gap, only severe atrophy at and below t-7. This atrophy is Cheng's real concern and because of the loss of nerve fibers, is the real impediment to motor return from his cocktail procedure. Still, he and his staff spoke almost reverently of the possibilities of his growth factors, 'without it, there is not hope,' he said.
    He left a 'window' in my spine for stem cells when 'they are ready,' though in later conversation, he stated that current stem cell therapy is not ready, almost inadequate and ought not be attempted. His people have dropped embryonic stem cell research in favor of bone marrow stem cells, for ethical reasons and the very high risk of cancer and infection. He indicated his procedure will be ready in 4 to 5 years for humans, but that his growth cocktails are the best thing available today because of the safety and efficacy, emphasis on safety.

    Cheng is not an arrogant man, doesn't seem in the least bit interested in praise and reward, 'I will get my reward from God,' he said; isn't aware at all of the controversy surrounding his work or maybe just doesn't care (he hasn't yet published the findings from this trial because it just ended, and because I don't think he cares about proving anything to the rest of the world, other than treating people); was very forthcoming with anything I asked, and his staff went out of their way to make things understandable. I was the last person included in this phase of trials, so he had more time to be with me than probably previous patients. While he would not allow me to record our talks, we talked several hours all told about general and specific issues related to spinal cord injury, I took extensive notes and re-read his book, and probably pestered the guy more than he was accustomed to from a patient. Still, we got on quite well, and he was pleased with my attitude and a bit surprised by what I told him was being said about him and his procedure. Several of his staff indicated that I had made a good decision by coming when I did, and that taking the growth factors now would arrest further atrophy and may yield significant results; greatest kick-in of recovery takes place at the 3 week point, so I'm doing pretty good.

    Great guys, the doctors, very patient and kind; the nurses were calm and sweet, and with caseloads three to four times what our US nurses face, they still managed endless patience and great care, so much different than the cynical impatient bitchiness I have had the displeasure of experiencing from US nursing staff.

    Loose notes:
    There are over 1000 Taiwanese waiting for his therapy, free at government expense. Foreigners can still get in when they want, although I understand now that Cheng has suspended procedures until he recieves the go-ahead for the next trial from the government. (He is quite hamstrung by the government, which only allows him to treat T and L level chronic injuires, though he does work on C level and below in the acute phase. Too bad our emergency room doctors back home don't have his phone number readily available to offer as an option to acute patients; I wish to God I had been given that chance, but, alas, too late now). He is opening a new facility specifically designed for such treatment tentatively Spring 2002, but I must say, they are not ready yet to deal with any influx of pampered, demanding foreign patients waving cash. Transport, post-hospital stay, what to bring/not bring, and expecially delivery of payment were a nightmare; I had to set everything up once I go here, had to use Western Union at considerable expense to wire cash because they only accept cash and who carries $15,000 US in their back pockets? I made several suggestions to his staff which I hope are soon incorporated, and yes, I am planning a return in the next few months for my next growth factor injection should recovery continue -if not, I won't need it- but use this as a warning if you have hopes to come here: THEY ARE NOT READY YET TO DEAL WITH FOREIGN PATIENTS. Not even close. I will stay abreast of how things change over the next year but be ready for all sorts of nightmares we don't deal with in the First World.

    My spirits are good, I'm recovering well despite the pain and side issues, and ready to get home. Feel free to ask questions and I'll answer what I can; I am no technical expert but I am a keen observer and have recorded as much of the experience as humanly possible. By the way, fundraising efforts raised app. half of the total cost, 20% coming from the generous people here on this site, of which I am eternally grateful. Looks like progress towards putting together a non-profit to facilitate people seeking foreign treatment is well under way back home (great job, guys; who says dirt bikers are TOTAL idiots? and yes, donations are now being accepted!) and we should be launching something mid-to-late this year. If we can help others in need, damn right we're going to!

    Alright, I'm now officially soaking wet, chilled and exhausted. If I've left gaps in my record, let me know and I'll address them. Thanks to all for the kind words and donations, and I will get back here asap. Onward!

    vgrafen

    [This message was edited by vgrafen on January 19, 2002 at 03:41 AM.]

    [This message was edited by vgrafen on January 19, 2002 at 03:45 AM.]

    [This message was edited by vgrafen on January 20, 2002 at 01:26 AM.]
    vgrafen

    My book, 'Scouring the globe for a cure: a disabled man's experiences with stem cell treatment' is available at Booklocker at the following address:

    www.booklocker.com/books/2857.html

    A percentage of every sale goes to CareCure.

    #2
    Let me be the first to commend you...

    on this informative post in addition to your surgery. Well done! Hope you recover to the fullest extent possible and that you're more comfortable real soon. Great work. Looking forward to hearing more as your time allows!

    ~See you at the SCIWire-used-to-be-paralyzed Reunion ~
    ~See you at the CareCure-used-to-be-paralyzed Reunion ~

    Comment


      #3
      WAY TO GO VGRAFEN!

      Please keep us up to date on your progress! Consider biofeedback as a therapy alternative. I'm a T5 complete. Yet with biofeedback ALONE I've regained the ability to sit up. And I can free stand in KAFO braces (this since I got back from France.)

      Dr. Cheng seems a really courageous and competent researcher. I wrote him several times inquiring about just going to Taiwan to receive a growth factor injection. But I think that he was doing a research protocol and seemed reluctant to this...I'm very hesitant towards surgery, both because of the possibility of regressing, and the fact that I can't afford more than a week off work.

      Eric Texley
      Eric Texley

      Comment


        #4
        thank you vgra

        wonderful post about wonderful people.

        Comment


          #5
          congratulations, glad to hear that everything went well. Thanks for the detailed update as well. Now, get those infections taken care of.

          Comment


            #6
            Good luck with your recovery!

            It's unfortunate thousands of people will have to endure a lifetime of pain and misery, because they won't gain access to this acute treament now.

            It will be a hard cross to bear for those who find out too late.

            Too bad we couldn't set up some kind of mailing program that puts us in contact with most of the rehab centers in the US, so we can bring them up to date on current trials and ones that are soon to begin.

            bill

            Comment


              #7
              Probably

              the last guy you want to hear from. But good luck on your recovery and thanks for the information.

              Bygones.

              Comment


                #8
                AWESOME!!! Thanks for sharing.

                Comment


                  #9
                  Hi Vgrafen, I am really happy for you and that you seem to be getting things back. I am also jealous but mostly happy for you.

                  I'm surprised that Cheng thinks 4 to 5 years for humans... he never gave me a timeline but I was hoping more for 1 to 2 years. Did he mention anything about OEG cells? And what is this "window" he put in for future stem cell applications? I hope I got this too... he told me that if he (or anyone else) needs to open me up again it will be much faster & easier this time because of the way he closed up the cord area... perhaps this is the "window" he's referring to.
                  "Oh yeah life goes on
                  Long after the thrill of livin is gone"

                  John Cougar Mellencamp

                  Comment


                    #10
                    1984

                    Bilby, the "thought police" will get you. How can you say such a thing about our new "happy life?"

                    We all know that Big Brother works at Quickie and wouldn't approve of this conversation....neither would our therapists or rehab doctors!

                    Eric Texley
                    Eric Texley

                    Comment


                      #11
                      Good news.

                      Glad to hear about your ordeal.You might have helped some people along the way.This 1 to 5 to 10 year thing I have been hearing that since 1966.

                      I will be looking forward to how the outcome is in the next few months.Good Luck.
                      Mike T12

                      Comment


                        #12
                        Best wishes and a speedy, bountiful recovery Vgrafen, I'm glad you were able to gather enough resources to go!

                        Sounds like you'll definitely get some return.

                        Comment


                          #13
                          updates

                          Thanks, everybody, for the words of encouragement; believe me they help.

                          Still got the flu and bladder infection, but I just did a catheter and the urine is finally clear. Every day brings more and deeper sensation; really mad-dog spasms, especially in bed and when filled with piss. Every time I deep breath, yawn, touch anywhere near or below my injury, my legs go nuts. Had an uncomfirmed voluntary right leg extension, the thigh muscle going nuts and I just might have moved it myself. Honestly can't say, but I AM improving. More happening right side than left, but there, too, I feel more and more.

                          Reply to email from Chu-Chu: Cheng performed a 'laminectomy' on me, and 'neurolysis of the spinal cord.' These are the terms he used.

                          Chris, no bad vibes. We complete plegics have one hell of a daily struggle, para and quad, and shit gets tossed about too easily. My only enemy is paralysis, not you, brother.

                          Eric, I'm not really familiar with biofeedback and what it entails/does; can you give me a description/explanation, is it something only available at big-time hospital/rehab centers, and does anyone know if UC Davis has it? I know my local rehab center does not.

                          Bilby, the foundation we are attempting to put together will do something along that order. It is a necessity, and once we figure out how to legally inform patients in the acute phase, I don't give a damn who or which doctors we offend bypassing their closed, comfortable fiefdoms and trying to give patients at least the semblance of choice. God forbid another person has to suffer in ignorance if there ARE legitimate options available. Anyone who wants to get in bed with us on this project let me know.

                          mkowalski, I just have to assume he did the same for you as he did for me. I'll ask, though, when I see him tomorrow, if you'd like. Not a word on OEG's, but from what little I understand about stem cells and Cheng, he holds real hope for it in addition to his growth factors. The 4 to 5 year mark is when he sees it being therapeutically applied/available, but human tests sooner. The scrapping of embryonic stem cell research put them back 2 years, but he said that's a good thing, meaning one less dead-end road to waste time on. Also, and this is from me, based on 'reading through the lines' of what his staff was saying, stem cell applications in use elsewhere (you know where they're at) are to be considered DANGEROUS, UNSAFE AND UNRELIABLE!!! Cheng and his people wouldn't outright say this
                          -they obviously can't- but the message was delivered to me several times: not yet. As for non-invasive therapies currently being developed, Cheng indicated a person would still need some form of decompression/spinal cavity opening in order to prepare the region for stem cells, etc; somehow the initial damage from the time of injury must be corrected. He said, 'I don't think it is possible' when I asked if stem cells or other drugs could simply be injected and recovery guaranteed. The surgery would be needed to repair and prepare the area.

                          Tired, drained, but sensation just swarming about, so the spirit stays bouyed. Kind of frustrating when one thinks how easy it is to simply move a fully functional finger as opposed to the effort it takes to try to get these dead legs to respond. Still, this work I must do, and I'm really looking forward to getting into my standing frame at home and seeing how/if that helps.

                          By the way, stay away from the pig eye soup here, man, I'm talkin' the strangest gas you EVER tasted coming up from the gut!

                          vgrafen
                          vgrafen

                          My book, 'Scouring the globe for a cure: a disabled man's experiences with stem cell treatment' is available at Booklocker at the following address:

                          www.booklocker.com/books/2857.html

                          A percentage of every sale goes to CareCure.

                          Comment


                            #14
                            cool Vgrafen.,
                            When i was there i didn't had the chance to have big talks with Cheng., on the other hand the nurses were quite nice and friendly [img]/forum/images/smilies/wink.gif[/img]
                            At the time when i spoke with Cheng about stem cells he was concerned with the profileration of tumors after a stem cell transplant.., glad that he his very optimistic about it.
                            How are your meals there ? man, i starved while i was there., i thinks that was the period of my life when i eat so many hamburgers and hotdogs.
                            I completely gave up on buying local food.
                            I remember once i bought a green ice cream, and the green was because it was a peas ice cream [img]/forum/images/smilies/smile.gif[/img]
                            When i got back i couldn't see a hamburger in front of me.

                            hope you the best,
                            Bruno

                            Comment


                              #15
                              "As for non-invasive therapies currently being developed, Cheng indicated a person would still need some form of decompression/spinal cavity opening in order to prepare the region for stem cells, etc; somehow the initial damage from the time of injury must be corrected. He said, 'I don't think it is possible' when I asked if stem cells or other drugs could simply be injected and recovery guaranteed. The surgery would be needed to repair and prepare the area."

                              Vgraf...can you ask the Dr how he would deal with someone who has no injury but whose paralysis is due to ischemia (lack of oxygen to the cord due to stroke)? Can his growth factors be delivered via a lumbar puncture or spinal tap instead of a full invasive procedure? Thanks
                              Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

                              Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

                              Comment

                              Working...
                              X