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Thread: DREZ-? for Dr. Young

  1. #21
    Member georgeh's Avatar
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    DREZ experiences

    I'm a T10 complete 6 years post accident and I've had severe burning pain in my buttocks and thighs and cramping gripping pain in my rectal and genital area for 5 years. I found out about Dr. Falci's work at Craig Hospital in late 2002 and emailed him directly. By that time I had tried nearly every medication scheme available and I was losing hope fast. Nothing had offered any real pain relief. He thought I sounded like a good candidate but told me to talk to his assistant, Charlotte Starns. Charlotte needed the results from a current MRI, so I got one and had the results sent to her. After several more question and answer periods over the phone, she and Dr. Falci decided to bring me out to Craig from Maryland for a week of pre op testing and screening. If everything proceeded smoothly up thru that point, I would stay and have the CA (computer assisted) DREZ surgery. I came out in April 2003, passed all pre op screening and testing and was OK'd for surgery. I had the DREZ seven days after arriving at Craig and spent a full 14 days in the hospital recovering. It'd a very long and laborious surgery. I think I was on the table for 10-11 hours. To make a long story short, it didn't work. NO change in the pain levels at all. It did eliminate all spasticity which was a big bonus.
    During my recovery, Dr. Falci mentioned that although he DREZ'd all areas that the computer determined were hyperactive, his data showed that areas up to two levels above the areas that were DREZ'd could be responsible for the pain I was having. Even though these areas didn't test hyperactive during the preoperative testing, he thought they still might be causing the pain. He wanted to schedule a 2nd surgery before I left the hospital so I wouldn't have to make another round trip from Maryland. My recovery was pretty tough and I didn't think I could stand a 2nd surgery then, so I turned him down but told him I'd return for a 2nd try in 4 months. I came home, recovered well over the next few months and returned to Craig in August 2003. I went thru the same 7 days preop testing and screening and underwent another 9 or 10 hour surgery. Fourteen days recovery in the hospital and another total wipe out. NO pain relief at all. I was a two time loser. While in recovery, I found out that one of my nurses (Angie) was engaged to a guy who had also undergone 2 DREZ surgeries by Dr. Falci with no help from either one. Another two time loser.
    Even though neither surgery worked for me, I spoke and wrote to several people who had excellent results. It is definitely for central pain. ..
    If Dr. Falci called me tomorrow and told me he thought a third try would work, I'd be on a plane to Craig the next day. It's called hope and it's something these medications don't give. I believe the guy is the best in the world right now at this procedure and I encourage anyone to contact him. You never know. You may be a good candidate and you may have a successful surgery and beat this pain once and for all. I lost about 2 levels of sensation as a result of both surgeries. No real loss of any motor skills. No pain relief but complete spasticity elimination. Email me for more info if you're interested. georgehunt@adelphia.net .. Good luck to all

  2. #22
    thank you so much for sharing your experience. it was very informative for me.

    btw, now i know why, in a post a few months ago, i referred to it as CADREZ...i knew it was called that at one time. CA=computer aided as you said.

    i, too, have heard many good things about the dr. at craig. he does not guarantee success but his percentages are very good. and he's been doing it for years. i provided the contact info to charlotte (his assistant) in an earlier post on this thread for those seeking more info.

    if i wasn't c7, i might give it a shot.

    i'm sorry it didn't eliminate the pain for you.
    Last edited by cass; 08-11-2006 at 10:53 PM.

  3. #23
    Cass,

    Thank you for your posts. They are interesting and make me alert to following results of Falci at Craig in Denver. The picture about Barry Corbet is confusing. It is almost as if his DREZ result is now an urban myth--it is hard to pin down the full story.

    I did correspond with Barry and also spoke by phone many times over an extended period. I only stopped because he said he was going to have DREZ and so would be at a different number for a couple of months. He was a prince of a fellow. the information I received from his friend, although it was second hand, was that in the first few months Barry felt the tradeoff was worth it but that after more than a year, pain had returned and he had obtained an opposite opinion and was not feeling well enough to correspond.

    It has been a number of years, but if I recall correctly, Barry was experiencing mostly lancinating pains, which would be posterior column, which is where DREZ lesions are made. This would not necessarily speak to sponothalamic pain, in the anterior cord. By the time I could finally get his number again to ask him personally, he was back in the hospital and shortly thereafter I learned he had passed away. So I do not have really reliable information on him. he was a guy who really cared and was kind to all.

    George, I am sorry the procedure did not benefit your thoracic injury pain. I am very curious. Which of the central pains do YOU have. Is it burning, muscle pain, shooting pains, gut/bladder pain, or what? I am trying to determine if you have spinothalamic pain, lemniscal pain, or visceral pain. Also, if you can recall, as to the people who had central pain who were helped, was their pain burning just under the skin (spinothalamic) or was it the pain that accompanies spasticity (burning in the muscles)?

    Finally, Cass, were you informed why a high lesion is not a candidate for DREZ? If DREZ works, then if one were willing to sacrifice function, and a great many would be, the majority, nearly all with severe burning would gladly surrender function for pain relief, then it seems Dr. Falci would agree to do it. He is obviously aware of failures, and perhaps loss of function from the cervical area down in cases which also had no pain relief seems too great a burden to bear. Since I am not a neurosurgeon there is probably a very good explanation for the whole matter, but I do have questions.

    From what I understand, Craig is a really good center for DREZ, however apparently no one there made a public statement on spontaneous pain vs. evoked CP pain in DREZ, to my knowledge, and since most people I know would surrender function for pain relief, it seems odd that a neurosurgeon declines for high lesions.

    And for me, it casts a little doubt on the percentage of CP patients who are getting relief. I do not consider what George is calling computerized analysis of which nerves are hyperactive a valid test for Central Pain, since it makes no differentiation whatever between spontaneous and evoked CP, nor does it differentiate between the different central pains.

    Also, you can cut the entire cord above the lesion which gave CP and the pain will leave for a year or so and then return. Why should DREZ,the lesioning of one little area, avoid the same fate for fully developed CP? The pain is thought to originate in the thalamus, in the genetic lockon of excitotoxic chemicals being manufactured by the gene protein factories in the thalamus, namely the NERVE GROWTH FACTOR in the glia (stimulated as an attempt to repair nerves) which then cause the production of BDNF in the glia, which then blocks GABA in the neuron nearby. Since this is thalamic in nature, I cannot make out a logical case why DREZ should ever help any central pain other than the evoked pain. The spontaneous pain should remain unaffected it would seem.

    This is why it is so hard to get a handle on DREZ, because even those most directly affected, the patients, never get a handle enough to speak of their pain in specifics, making it very hard to know how good DREZ is, and whether it reaches spontaneous pain. My communication with Barry 'Corbet was that it did not give lasting relief from the spontaneous burning, so I have come to my conclusions, reasoning backwards. As you talk with people would you be kind enough to see if you can gain information about the specifics I mentioned.

    George, there are at least two very good animal models for Central Pain. If DREZ helped, then DREZ in CP lab animals should help, and the little nerve tester should also be predictive. From the literature, I am not aware of any scientist who has produced any data from animals corroborative of the idea that DREZ in any way benefits spontaneous spinothalamic burning. I hope I am wrong and that someone will send me an article showing otherwise. I avoid, or try to avoid the evoked pain by avoiding the evoking stimulus, such as light touch or the blast of cold air, etc. The spontaneous I must live with.

    Best wishes to all of you. These are very serious questions for each of us, and the question is too central to our hopes and prayers for any discussion to take on the elements of a dispute. Therefore, I apologize in advance if my questioning on these matters gives offense to any person. I have undergone THREE surgeries, and four injections with steroids around the cord, to try to help the matter, without benefit, and so of course, I would be very skeptical of any promised relief without something concrete to go on.

    Had I posted at earlier intervals, I would have written differently, perhaps more optimistically, but at this late date, I am anticipating that something medicational will be the answer in the long run, or maybe stem cells. I will not consider surgery until the surgeons are willing to differentiate the central pains and publish specifically on the type benefitted. Canavero in Italy is brutally honest about his results and the ONLY surgeon publishing complications, and being somewhat specific on WHICH type of central pain he is treating. I know of no one more optimistic about surgery than Canavero, yet he religiously reports his complications and they are enough to give pause to anyone considering a surgical cure for CP.

    I have been amazed at the willingness of those with what I consider relatively minor CP to go to great lengths to get rid of it. For example, CP in the feet alone. This demonstrates how terrible persistent pain is. We do not even want persistent pain in a single tooth, let alone over the entire body. Since many with CP do in fact have it over the entire body, or the majority of it, I think surgeons owe us an explicit, specific report on which type of CP was present, and which type specifically was benefitted, and for how long. I would have had a fourth surgery, deep brain implants had not the surgeon informed me that he no longer regarded such surgery as effective. I was to undergo thalamic surgery/basal ganglia, cord surgery the next day and knew I had a forty percent chance of brain damage. CP is really severe. We would do anything to get rid of it, but the desperation can make you reach for things that arent' going to help.

    Frankly, I am also wary of the computer assisted testing to see where our CP is coming from. For the life of me, I cannot see why this should work. I have written the company which makes the machine, or one similar, and the idea is that stimulation at different voltages/currents etc reaches large to small fibers. This may be true, but how would that tell us where our CP is coming from.

    One could say if C fibers are hypersensitive that the pain is Central, but it could just as easily be peripheral since we still haven't differentiated spontaneous from evoked, and science still doesn't know how evoked pain in CP works. The use of the machine seems to presume C fiber means CP, but C fibers are linked to motor function as well, so I think some enterprising scientist needs to tell us the theory behind it all, so we can have more confidence. Incidentally, the company which sent me the literature mistook me for a practitioner in the area and made it clear this woudl "INCREASE my income" since I could use it for any pain patient and that companies would pay for the testing.

    In other words, it was commercialized. The manufacturer would not answer my questions about mechanisms or physiology but simply repeated the claim that the machine could differentiate C fiber activity from alpha activity. So what? How does that tell me if my pain is spinothalamic or not?????

    I do not know if Falci is including functional MRI or PET to help diagnose central pain, but it seems to be essential that the respected radiology dept in Denver could provide him with some kind of tensor MRI backup or the like, to help him determine WHERE the pain is. This would not be perfect, but since brain metabolic scans are now more or less the standard for locating WHERE the pain is located, it would be nice if a neurosurgeon could show something different in the brain after the DREZ procedures. Casey even does this for placebo, so it seems to me we would at least want to know DREZ offers more than what placebo offers.

    These matters seem a logical adjunct to the performance of DREZ. I do not have the qualifications to comment on this professionally, nor as any kind of expert, (my questions are more "been there done that" reactions, so my remarks should just be regarded as queries by someone for whom the actual facts really matter, not as any scientist. I am hunkered down, trying to avoid stress which would impact the daily (and nightly) pain, so I can survive. I don't want to leave my "cave" of protection (accepting my fate philosophically) for anything like a ten hour surgery that doesnt' help.

    George I admire the metal in you, but at this point, I no longer have it. I stay as far away from the surgeons as possible. And I do not expect to get any personal phone calls from them, it is always their secretary on the phone.

    I don't even get phone calls from the hospital, just notices they are going to ruin my credit if I don't pay the undifferentiated, unenumerated, unexplained total amount I owe them. eg. the following regarding one MRI I had:

    I Call the hospital billing office.

    Can I speak to Ms... please.

    Sir, I can help you.

    What is this bill for?

    Services provided.

    What services specifically, I just have a total amount, and my insurance has already paid you ten thousand dollars plus xxx.

    the services you received.

    But this bill doesn't explain them

    Sir, your account has been forwarded to a collection agency. You would have to talk to the hospital about your bill. In the meantime, good day.

    I thought this WAS the hospital. Can I talk to the supervisor

    No.

    Cell phone billing representatives in New Delhi who don't speak English are positively helpful compared to the billing dept at my hospital. I am not really sure if I am talking to the hospital since everyone who answers has an accent from the deep South and I live in the North. See why I am in no hurry to rush into anything connected to a hospital.
    Last edited by dejerine; 08-29-2006 at 04:30 PM.

  4. #24
    Senior Member alan's Avatar
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    Dejerine,

    As a C-5 quad, I couldn't afford to give up any function, much as I'd love to be rid of the pains (or at least have them reduced.) One level lost would mean no arm use at all, and even more trouble breathing. T-5 to T-4 or T-3, I'd go for in a second. C-5 to C-4 or C-3, no way.
    Alan

    Proofread carefully to see if you any words out.

  5. #25
    Alan,

    Good point. Lapse of logic. Happens too often. I forgot about breathing, which is dumb considering that for the first year or so after injury I couldn't sit up straight and couldn't take a deep breath, so I had this terrifying ride of always finding myself nearly asphyxiated. At night, I would dream I had died, my mind would be absolutely blank, black as night in my dream I think for a fairly long time, and then with a gasp I would come awake. Worst nightmares ever. I had this Pavlovian fear about breathing and it always freaked me out a little to watch Christopher Reeve on TV, because I would think, "what if that respirator breaks", and later, "what if his breathing muscles suddenly give out". It was like fear of flying in me or something. Fear of that one time when the old chest muscles just couldn't get the job done. When you are not sure of breathing, you feel pretty helpless. I don't know how Reeve was able to do what he did. He is definitely a real hero, as is, was, his family. I don't think his kid(s)? will ever realize how brave he really was.

    One of Kevorkian's earliest "patients" was C-4 with CP and he had to have a respirator. C3 just wasn't moving his diaphragm although theoretically it should have done. No one ever visited him. He just gave up. I still can't think about it.

    I think of you often Alan, and hope you are managing to get just enough figured out to make it. You are an inspiration to me. Because of the pain and heavy meds I seem unable to summon any ambition emotionally, but when I think of your efforts, intellectually I am able to make myself accomplish a few things. It helps.

    I am blessed to live in a college town where people/professors/students donate liberally to this thrift store, so I often have the riches of a fine selection of books at very little cost. I am reading the story of Benjamin Franklin. He was on his own as a lad in the big world, saw prostitutes etc. but systemmatically figured out a system of "morality", thirteen points, that he worked on, kept a journal where he checked off his improvement, until he had his self respect. When I read of this I realized how little ambition I have and how little ambition I had to form ambition. Fighting pain is a full time job which not only obliterates work, but removes any guilt for not doing the most basic things which would make life go better. Objectively, I should have goals, but the pain is really on me, so I try little tricks to outsmart it, which seems to require all my energy. I lose every battle but so far the war is going my way since I am still here.

    My motor lesion is incomplete, but the sensory is more complete, in fact complete would be better than the burning. I think one reason the pain is so large is that it goes into the membranes that surround the brain and is very intense inside the mouth, tongue, gums, and sinuses, plus the corneas. I dont' mean to sound miserable about it, but those are the facts. The blanketing of the pain all over I think immerses me in CP, and nothing else has claim on my attention, even if the things are much more important than what I am thinking about. I don't claim to be a respectable human being. I claim to be alive. The thing is, I can still go out, minus some of the clothes respectable people wear, and decompress a little, but I feel guilty doing it sometimes, because I know you cannot, because the visceral pain of bouncing around prevents it for you. This panics me just to hear about your predicament, because such distraction is central to my strategy, so I don't know where you are going to recharge.

    I wish I could float you down a lazy river or something because you write like the kind of person who loves the outdoors. I nearly had a budding movie producer willing to come down from New York to make a documentary about you, but then he got distracted by some girl, whom he wound up marrying. Ah me, women! Just kidding. They add something to the world us smelly men just cannot provide, including getting us here.

    Your courage is really something, it shames me. Your drive to survive is as religious a thing as I know of. My religion is not to give up. I have no leadership position in this religion, but I am a reasonably solid member of the congregation. Unless I am mistaken, that is supposed to be sufficient to avoid damnation. Still, it is hard to fear and tremble over damnation when you already fear and tremble.
    Last edited by dejerine; 08-30-2006 at 09:44 AM.

  6. #26
    Senior Member craig's Avatar
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    Quote Originally Posted by cass
    if i wasn't c7, i might give it a shot.
    Me too cass, I'm down to about 4 hours of sleep a night and really burned out on that situation because in my case it is complicated with all the stuff that goes wrong in your 50s after 25+ years of c7 SCI. I know you are just a kid in your 30s cass.
    That was an interesting thread but I never met anyone who had the DREZ procedure. I corresponded with Barry several times and I liked him a lot.

  7. #27
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    Exclamation Drez procedure

    Quote Originally Posted by Wise Young View Post
    Phillis, in my opinion, the DREZ procedure should be a procedure of last resort because it is destructive. I also think that it should be restricted to the localized pain. Wise.
    I am in horrible pain for 5 years now following SCI. The pain is localized to my right leg. I do have movement in both legs but cant lock my knees to stand on my own, I can use KAFO'S and a walker to get around but not as efficient as my wheelchair. Im a 41 year old male at the end of my rope in regards to pain, I am also sick of all the drugs they have tried, even the spinal stimulator did not work. I saw Dr. Slavin in Chicago and he recomended the Drez myelotomy. I need advise

  8. #28
    Jeff I can't offer anything directly, but there is quite a bit of info here archived on the forum if you do a quick search.

  9. #29
    George! Thank you very much of telling us of your DREZ experience.

    I'm going to Craig Oct 2010 for the 4 day evaluation. I feel more at ease after reading what you had to say even though you are a two time looser ready to go for the 3rd!

    Gary
    Gary Is = L-1 Para for 34 years.....................
    ~~~~~~~~~~

  10. #30

    Wise Young on Drez

    I did go to Craig two weeks ago and had the three day evaluation and am considered a good candidate. I am going through with getting the necessary CAT Scans and MRIʻs and am thinking of going back to Craig (tentatively) Early February, going for the DREZ.

    I am still reading and researching DREZ. One you mentioned that the pain and DREZ done on Barry Corbet has some mystery surrounding it? Have any of read the article on Randy Snow in Modern Mobility? His DREZ is a 100% success story.

    Here is a quote from Wise Young that has me lookig deeper into going through with it;

    "...Regarding your question, I would not have advised a DREZ procedure in the lumbar enlargement of the spinal cord. The spinal cord ends at L1 and the lumbar enlargement is from about T11-L1. It contains most of the neurons that control muscles of the legs and pelvic region. Lesions of the spinal cord in this region, such as the DREZ at T12, may affect bowel, bladder, and anal sphincter, since neurons that control these functions are situated in the spinal cord under the L1 vertebra."

    I replied to Georgeh, it must be on a different thread; I noted that his two DREZ surgeries were done over seven years ago, and am counting on major advances in medical technology and expertise by the doctors performing the DREZ. I was not aware that Georgeh had contact with another SCI that was also a ʻtwo time loserʻ having had the DREZ twice and no pain relief. I feel for you George as I have had my pain 24/7 for the past 20 years. The first 12 years in the chair the pain was ʻmanageableʻ but it kept getting worse and now I am in a place of; the pain HAS to go away, if not 100% then at least 50%.

    As for the Wise Young quote above, it concerns me as I am an L-1.
    Gary Is = L-1 Para for 34 years.....................
    ~~~~~~~~~~

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