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Thread: Progress Reports for everyone from this site having Dr. Huangs Procedure

  1. #1

    Progress Reports for everyone from this site having Dr. Huangs Procedure

    The Main Purpose of this post is to combine all data obtained from the individual posts of everyone from this site (CareCure) having Dr. Huangs Operation in China.

    I think this will be interesting to Compare any progress made based on different injuries After having the procedure done for everyone interested on this site. I will update with statistical comparison once any results are obtained. Lets keep our fingers crossed.
    ______________________________________________
    I guess what concerns me is that I have heard many reports of other procedures where people try to justify the operation by saying they are glad they did it and it helped out some, when in reality they were the same as before the procedure and there was no real functional return. I think there can be a psychological factor here as they had gone through so much with the Expense, Travel, Operation, then they try and justify it subconsciously as it having been a success. It has never been anything intentional on anyones part, just human nature. It really seems though that Dr. Huangs Procedure is the real deal from everything disclosed to date.

    From the sounds of everything reported on Dr. Huangs procedure by Dr. Huang himself, we should be seeing some quantitative results here. It will be interesting to compare the levels of results obtained vs. different injuries.

    I will add anyone from this site to this post who has the Procedure done and is interested in keeping everyone informed of their progress.

    ____________________________________________
    Chris-

    "I Am a 25 year old male (turn 26 in China)
    Am a C5/6 (ever so slight wrist extensors) complete ASIA A
    Was injured April 13, 2001 in a motor vehicle accident".

    9-24-03
    Chris arrived safely in China and will undergo the Procedure very soon.

    9-28-03
    6:00 p.m. on Sunday Chris is out of surgery and in the ICU and everything so far is doing well.

    9-30-03
    "Thanks for all the support. This will be short, as I am still in bed hooked up to IVs. I'll give a long, detailed report tomorrow, but improvements are definitely happening."

    10-2-03
    Chris to be reporting his results soon. Curtis

    10-3-03
    Pre-op observations:
    Function:
    C5 was normal(strong biceps)
    C6 trace wrist extensors(each had a grade of 2)
    C7 none
    *no finger movement, pinch, or grip

    Sensation:
    C4 normal
    C5 abnormal
    C6 abnormal
    C7 nothing
    *the biggest thing was that I only had slight sensation on the outsides of my thumbs. Otherwise, none in the hands.

    That first afternoon I began sweating and my legs and feet were noticeably warmer. The next day, my thumbs had sensation all over them - almost normal in some places. My index fingers now have a lot of sensation. When I was going through Baclofen withdrawals, I could feel abnormal sensation out to my little finger I believe. Yes, I'm tapering the Baclofen now. Dr. Huang believes that I have some sensation down to T1 on my right side.

    My left wrist extensor has a grade of 4 now. Pinch muscles are firing very faintly. Hard work ahead. Left tricep is firing to where I can almost straighten my arm; the right one fires too but is weaker. Dr. Huang claims he can feel grip muscles firing and that my middle finger flickers when he tells me to move it.

    Muscle function has improved more on the left; sensory more on the right.

    Two nights after surgery a nurse had to move an IV line from the top of my left foot to the top of my right foot. I could tell exactly where they put it on my right foot because I could feel some pain. Weird.

    Please remember anything that I have gained is due to an early recovery mechanism that cannot be explained. Good things are happening now, but the actual regeneration is a very slow process. Hard work, rehab, and 12-18 months of these little cells doing their work should be a hell of a journey.

    10-08-03
    10 days after the surgery for me. Nothing dramatic since the first few days after surgery.

    Dr. Huang and the doctor in charge of me have both told me that my injury was very severe and my cord was very narrow, making it difficult to know where to inject the cells. I am still very encouraged because I feel something is happening.

    I continue to work with my hands and believe that they(especially the left) will allow me to do much more than before the surgery.

    I feel that I can breathe much deeper. The follow-up lung capacity test should objectively verify this. I have been coughing a lot due to the pollution and the "stuff" comes out of my lungs easier because of the stronger cough.

    When laying flat in bed, I can straighten my left arm out about twice before the tricep fatigues. Much work needed. I also have a new muscle twitching in my left arm.

    When I spasm, I seem to be able to feel my abdominal muscles contract.

    I have a lot of work to do, but I feel changes are taking place. I know how long actual regeneration takes, so I'm prepared to work my ass off.

    10-16-03
    had very slight movement in my wrists before the operation. My left wrist is now strong enough so I can get some useful function out of it. My hands feel like a pinch and grip may be coming, but nothing yet. I only have stronger wrist extensors and not flexors. Wrist extension and some contracture of the fingers is allowing me to grasp and hold onto things. It's not much yet, but it's functional improvement.

    I used to wear tenodesis splints all the time, especially for typing, but I'm trying to wear them less to strengthen my gains. I have managed to type using my index fingers. It's very slow and cumbersome, but some of you may enjoy not having to read my ramblings.

    10-18-03
    Quoted by Dr.Wise Young
    "Well, I finally met cjo (chris), his mother, and justin (his friend). What a pleasure it was to see him! He seems very well and he is leaving for the U.S. on Sunday (today). I think that he will be very glad to come back.

    Based on my questions, cjo definitely seems to have gotten back sensation down T2 or even T3. He is able to grasp and lift a water bottle with either hand (left a bit better than right). According to both Chris and Dr. Huang, his wrist extensors (C6) are stronger, particularly on the left. His triceps are still very weak. Touch sensations in his hands have improved. He is able to feel me touching his thumb and his pinky. He is starting to type with his fingers (as opposed to typing sticks).

    Chris is back on baclofen 20 mg four times a day for his spasticity but hope to wean down from that dose. According to Chris, his movement and sensations were better when he was off baclofen during the days that followed surgery. His mother says that his legs are definitely warmer.

    Cjo's somatosensory evoked potentials were improved and could be elicited from stimulation of dermatomes down to T4, consistent with the presence of better sensation that he is getting. Wise".

    10-20-03
    I'm embarrassed to admit that, as a C5, I haven't been able to sit unassisted. When I was at Craig doing therapy, they tried and once in a while I'd get lucky and be able to brace myself up with my arms for a few seconds. When I started therapy in my small town, they gave up on it because they said I had no trunk control.

    Fast forward a year and a half --->>> the video that Dr. Huang did the night before the surgery they raised me to a sitting position on the side of my bed. I knew there wasn't a prayer because the conditions were less than ideal - soft bed that was so tall the my feet were just dangling instead of resting on the floor. They tried repeatedly and I'd just flop around. Couldn't do it.

    Fast forward 22 days --->>> the morning I was to go home I still had to do the follow up video. Dr. Huang was hurried because his flight for the States was departing 2 hours earlier than mine. We did the same stuff as before. When I got to the water bottle, I was disappointed because it wasn't my best work. I was still able to pass it back and forth between hands and raise it to my mouth which was a vast improvement from before. I think I had stage fright, because I was pretty damn good with that bottle when I practiced without an audience. Anyway, after that they drug me to the side of the bed with the same conditions as the first video. I didn't want to be subjected to this again because I hate being videotaped when I fail at something. Only I didn't fail. Since the surgery, I hadn't tried it, hadn't practiced it, and didn't have a therapist telling me how to do it - I just did it. I did it several times to make sure it wasn't a fluke. I could rock back and forth and side to side a little bit with the help of my arms. Dr. Huang was very happy, as was I.

    Conclusion thus far: most sensory and functional return has been in my trunk.
    ___________________________________
    Bob-

    "I am c5-6 inc. asia c. doi 7-4-99.
    I have some motor all the way down to my toes very patchy I can actually wiggle my toes, slight movement in my legs, some trunk control, and sensory throughout most not normal. I don't have any Neuropathic pain".

    9-23-03
    Operated on by Dr. Huang, the Operation went well and he is currently in ICU recovering.

    9-26-03
    "Friday September 26, 2003 Hello everyone, sorry about the delay it's just that we've been extremely busy. I'll try to give a summary as best I can. I'll start with just after the surgery approx 5 hours afterward I woke up in the ICU and shortly after Dr. Huang came in to visit. He checked for any progress and this is the amazing part: immediately we noticed that I was able to sweat below my level of injury everywhere he checked was perspiring ( of course it was about 100 degrees in that ICU. We also noticed that my breathing function was much improved I can feel the breathing all the way into my stomach, I also have noticed increased strength my left grip in my hand was very much stronger and my right hand was stronger but not as much as the left. I am able to wiggle all of my toes on the left foot and some in right foot. I have also noticed that my circulation is improved my legs are warm and the swelling is gone. I noticed that my right leg is tingling and that I can move it up and down and move my ankle side to side. I feel increased bladder pressure and have noticed that my trunk is stronger. I can drink from a bottle with my left hand without holding on to my wheelchair with my right arm. Dr. Huang came in today, and helped me to stand in a standing frame. I needed help to get up but once I did, I was able to stand with very little support. He's going to make the frame a little taller as I am 6'4" tall and the frame was made for smaller framed people. They don't have a Jolly GReen Giant Frame LOL they will be back tomorrow to have me stand some more I am very excited about my progress and will keep you updated. Thanks for all the support, love and prayers....... Bob"

    This is pretty impressive, lets hope the recovery continues.>Curtis

    9-28-03
    Bob is feeling much better the headache he had is diminishing, he is looking forward to going home soon and then starting physical therapy.

    Quote from Dr. Young on the cause of the headache. "The headache is probably from the cerebrospinal fluid (CSF) removal (they opened the dura) that is associated with the surgery. Until CSF is replenished, people have a headache".

    9-29-30
    Headache is getting better.

    10-1-03
    Dr.Huang's staff came in yesterday and did a quick exam of my sensory I forgot what tickling was all about close to my belly button, it actually tickled it was an awesome feeling that I haven't felt in over 4 years.

    I was brushing my teeth today passing the toothbrush from one hand to the other which I couldn't do before the surgery, I noticed my gums were sore because I'm brushing better now than I have in years.

    The Headache is subsiding.

    10-3-03
    I feel as if I am ready to travel home now but I have to get Dr. Huang's o.k. I am ready to get home and start my physical therapy program.

    10-11-03
    Hello Everyone, Tim and Stephanie just left a little while ago, Karen and I will be 48 hours behind them. The anticipation is certainly building but bittersweet, as we will miss Dr. Huang and his staff, and all of these wonderful nurses. Yesterday I did my post-op video with Dr. Huang and the "boyz", The changes we noted since the operation were, increased sensation in my hands, torso, and legs, my left leg had some normal sensation below the knee and on top of the foot. I also had normal sensation on my left buttock, and most everything else was increased sensation, but not normal. I was able to move both legs from the knee down while Dr. Huang held my leg above the knee. There was also a trace anal sphincter control, so am I classified as Asia C now? This was only 17 days after the surgery, imagine what 6 months will bring! I was able to balance myself sitting on the side of the bed, and put my hands behind my head ever so briefly, but I couldn't do it before the surgery. I still have to take the muscle function test, and hope to get a copy of it, sometime today, I will be interested to see what changes that will show. Bob

    10-14-03
    home sweet home
    hi everyone,i too am home. man, a shower, american t.v., my own bed!!!! some things you just miss so much. well i will be pretty busy catchin up over the next day or so, so i will post soon. just wanted to let you all know we are home safe and sound. bob

    All Good news Bob!!! Curtis
    ______________________________________________
    Tim c-

    "I'm a rip-roaring C4/5, a year and half post, asia A, complete. fix me and you'll fix most. Although far from a medical description, a brief summary of my current condition is as follows;
    Function; my right arm is more C5, with trace tino in my right hand. my
    left arm is more C4.
    Sensory; C4. I currently suffer rather significant neuropathic pain. definately i will monitoring how it will be affected".

    9-23-03
    Operated on by Dr. Huang, the Operation went well and he is currently in ICU Recovering.

    9-25-03
    "My tricep muscles appear to be activated but still very weak. Also my ability to perspire has increased down to my lower back. My torso also feels stronger, yet it's still too early to tell. My sensory improved on my arms in areas where I didn't previously have sensory. I was told by Dr. Huang that I should expect more to follow, however, everybody's degree of recovery varies.I will continue to hope for the best".

    "Unfortunately, I experienced slight fever which was to be expected but also experienced difficulty with high blood pressure which was not expected".

    Apparently Tim is Doing better now and is out of the ICU. The Sudden recovery of Motor Control and Sensation is still not understood as to the mechanism responsible, but is something that is not uncommon with this procedure according to Dr. Huang in other people who have had this done; it cannot be attributed to nerve regeneration as this would not happen so quickly. Dr. Huang feels Tims improvements will continue. Being able to sweat below the level of injury is a big improvement and the potential use of Tricep muscles along with improved sensation is an even bigger improvement. These muscles will take time to recover after so long of not being used. >Curtis

    9-28-03
    Tim's headaches are slowly going away and is feeling much better. They brought Tim up a standing frame today to work on his legs and chained it to the shower chair from the care cure.

    9-29-03
    "Had better days. Awoke this morning to a nasty case of digestive blockage which spells pain in any language. anyway, my wife was right there to help with the AD. unfort it took hours to reduce. ultimately, the blockage could be attributible to many factors. only when your bp pumps to over 200 things get a bit fuzzy. as for things, dr huang performed four surgeries yesterday, sunday, and then stopped in to check on us at 10pm. he said that he would work on his caseload until oct 1st, the beginning of the chinese national holiday".

    Tim says "dr huang insists on exercise, of any kind.
    also, he still professes 0.1 to 1.9 levels of improvement as the result of the surgery. he's right."

    10-2-03
    I have initiated both physical and occupational therapies focusing on areas that have shown immediate improvement. For me these areas include torso control, hand grip and trace tricep movement. The occupational therapy is as basic as gripping a jar and practicing opening and closing the cover as well as bringing the jar up to my mouth to drink from. Yesterday for the first time I was able to pick up pieces of an orange and feed myself using a stronger thumb and finger pinch than ever before. However, it is important to note that the related muscles are still very weak.

    The expected post-op conditions of headache,fever and general feeling of soreness in my neck have pretty much subsided although it was tough for a few days. The standard post-op meds have consisted of antiobitic and a traditional chinese medicinal drink which I take three times a day.

    Good News Tim, keep pushing hard!!!

    10-3-03
    To answer a member's question regarding neurogenic pain pre, and post op;
    i suffered significant neuro pain in my legs and feet pre op. unfortunately, i still have it post, although i am told the pain can dissapate before long.

    10-09-03
    Personally, suffice it say I have noticed quite subtle, yet real return/improvement in several areas. Dr Huang, as am I of course, is eagerly awaiting how much impact the post-op PT/OT will have on his 'up to 2-level' improvement mantra. Let's not forget, he is also quick to remind me, that my post-op muscle tone remains low. Tomorrow, I'll post again.

    10-14-03
    Sorry for the lack of posting. I got home late Saturday night only to get settled in and then I spill water across my laptop.
    My next two days consisted of drying out my keyboard and correcting my internal body clock for the 12hr time difference.
    I will shortly obtain a second asia scoring from physiatrist at Kessler. My results will be posted.

    10-16-03
    I caught a bug since my return home which has served to mask any other internal changes that maybe taking place. I only regret not staying in beijing long enough for the sci conference, yet it would be rather usless without understanding chinese.
    ___________________________________________
    I will update as information is obtained!!!

    Curtis

    [This message was edited by Curtis on 10-21-03 at 12:53 PM.]

  2. #2
    Should also post if they have any neuropathic pain and if surgery helped.

  3. #3
    Good point QuadPro, According to Dr. Huang, most Patiants had Neuropathic pain (in some cases severe) that remained for a while after the Operation but later went away. I would be curious to know if for those that did have Neuropathic pain before the operation (as in my case) if it was better a few months after the operation. In my case if I could get rid of the Neuropathic pain alone it would be worth my while to have the Procedure.

    CJO, Tim and Bob if you could indicate whether you have any Neuropathic pain now, it would be helpful, also what type of pain it is, burning, shocks, etc. All this would be great to document prior to the Procedure.

    "Life is about how you
    respond to not only the
    challenges you're dealt but
    the challenges you seek...If
    you have no goals, no
    mountains to climb, your
    soul dies".~Liz Fordred

  4. #4
    Senior Member
    Join Date
    Mar 2003
    Location
    Copper Canyon, Texas
    Posts
    377
    This is very helpful!! I have Tim C as a complete from some post somewhere.

  5. #5
    Good idea Curtis. Here's a recent update from Tim regarding his pre-op injury status:

    i'm a rip-roaring C4/5, asia A, complete. fix me and you'll fix most. Although far from a medical description, a brief summary of my current condition is as follows;
    Function; my right arm is more C5, with trace tino in my right hand. my
    left arm is more C4.
    Sensory; C4

  6. #6
    Thanks Seneca and The Mom. I knew I had seen Tim c's level somewhere I tried to search for it with no luck, thats a big help Seneca.

    What I plan on doing is adding everyones progess under their names as I am on this site so much, might as well make use of myself, lol.
    This will save members from having to sift through a bunch of posts if they want to do a quick check on everyones status, looks like I will be busy pretty soon as I believe Tim c has his operation on Monday and Bob on Tuesday!!! Good luck guys, we are praying for you.

    If anyone has anything to add to these Pre/Op stats or any updates that I miss, please post a reply here and I will add them to the Original post. I will try to keep it as brief as possible so the original post does not get too long.

    "Life is about how you
    respond to not only the
    challenges you're dealt but
    the challenges you seek...If
    you have no goals, no
    mountains to climb, your
    soul dies".~Liz Fordred

    [This message was edited by Curtis on 09-21-03 at 10:25 PM.]

    [This message was edited by Curtis on 09-21-03 at 10:27 PM.]

  7. #7
    Ok I've recently just started to catch up on this study, but can you briefly fill me in on some info?

    -How much did this cost for these few people who are known here to have the operation?
    -What was the big thing, key thing, the dr was looking for that they got in (pain?)?
    -Can you possibly still try to get into the study?

  8. #8
    The Cost is $20,000.00 US Dollars. There is another post with a list of people who are interested in the Operation, it Sounds like Dr. Huang is a very busy man. I believe he will schedule them in as time allows. He has currently performed this procedure on over 300 Chinese people. Hopefully in time this procedure will be more finely tuned, thus allowing for greater functional gains.

    Neuropathic Pain occurs after the Operation, but then is said to subside in time. It must be when the OEG's do their thing, it creates Neuropathic Pain.

    "Life is about how you
    respond to not only the
    challenges you're dealt but
    the challenges you seek...If
    you have no goals, no
    mountains to climb, your
    soul dies".~Liz Fordred

  9. #9
    Senior Member
    Join Date
    Dec 2001
    Location
    harrison twp. mi
    Posts
    402
    Curtis, I have some motor all the way down to my toes very patchy I can actually wiggle my toes, slight movement in my legs, some trunk control, and sensory throughout most not normal. I don't have any Neuropathic pain. I will be having surgery on Tuesday as will Tim.

  10. #10
    I had my MRI checked my Dr Huang a few months back and hope to travel next year... however, I was hoping one of the guys currently in Beijing may be able to answer a question.

    There is a lot of talk of people with C4/5/6 injuries saying that if they got an extra 2 levels of function then they would get use of their hands. As far as I am aware, in most cases this is unlikely. When injured the roots from the spinal cord which go between the vertabrae and down the arms are often crushed, so even if the cord itself is repaired, there is little function return in the triceps or hands. Function lower down can be restored because the roots are still intact. Of course this depends on the amount of damage at the injury site.

    So my question is, are there any known C4, 5 or 6 patients that have received Huangs surgery and had functional return of triceps and/or fingers?


    Andy.
    C5/6, ASIA B.

    --
    To reply to me via email, replace 'spambucket' with 'andy'.

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