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Thread: Conjoined twin separation vs. SCI treatments

  1. #1
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    Conjoined twin separation vs. SCI treatments

    What does everybody think of the surgery being done to separate the conjoined twins??

    "The operation could kill one or both of the sisters, but after a lifetime of compromising on everything from when to wake up to what career to pursue, the Bijani sisters said they would rather face those dangers than continue living joined." Source

    Basically, this boils down to doctors performing a very dangerous procedure to correct a physical condition which the sisters feel is unlivable. Does this sound familiar to anybody?

    I know that perhaps separating these twins may be less complicated than curing a spinal cord injury, but this is the first time surgeons have tried to separate adult craniopagus twins.

    I see several parallels with SCI here. I don't know what it's like to be a conjoined twin, but I know that SCI life is hell as well. Even though these girls could die, they don't want to continue with their current physical situation. Why will doctors take this kind of chance with them, but not try a much safer SCI treatment?

    [This message was edited by cjo on 07-07-03 at 11:41 PM.]

  2. #2
    Cjo, SCI's already have the option of undergoing risky and expensive surgery to alleviate or "cure" their paralysis. Doctors in China, Taiwan, Ecuador, Russia etc., have been operating on desperate SCI's for years. In the case of those SCI's and the conjoined twins, full or even partial surgical success can't be guaranteed and there's the risk of further injury or death. Most doctors refuse to separate adult craniopagus conjoined twins because of the high risks inherent in extensive and complicated brain surgery. Most surgeons would prefer to wait until a treatment has been optimized and deemed safe and effective before moving ahead.

  3. #3
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    Seneca,

    I don't know that I would call all SCI surgeries currently available as "risky and expensive."

    I believe Dr. Young has commented that he thinks Dr. Huang has done a credible Phase 1 trial - demonstrating safety and feasibility. He also says that there is a very low mortality and morbidity rate. In the procedure I was discussing, I have heard several times that there is a 50% chance that one of them could die. Would that fly for an SCI treatment?

    Regarding cost, Dr. Huang is charging $20 grand for his surgery and for a few weeks in the hospital following treatment. I have had over half a million in previous hospital bills and I know $20 grand didn't even cover a few weeks at Craig - without a treatment that could potentially restore some function.

    I know I could receive no benefit, but for the above reasons I consider this particular procedure safe and cheap - especially when compared to the conjoined twin surgery.

    Finally, another thing that really stood out about this was an American doctor leaving the country to perform this surgery. One of the participating neurosurgeons is Dr. Benjamin Carson, the director of pediatric neurosurgery at Johns Hopkins Children's Center in Baltimore. I would like to see an SCI clinician follow suit.

  4. #4
    Senior Member Max's Avatar
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    CJo

    No offence!

    But what this news have to do with Cure forum?

    In my opinion this topic belongs to SCIENCE NEWS FORUM!`

    Am I wrong, Seneca ?

    Or we still playing old game?

  5. #5
    Senior Member chastev8's Avatar
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    No Max this belongs here. This speaks to the cure problem. Without wounding too much like DA, this goes to show that we really are getting the short end of the stick when it comes to poloticians caring and doctors and clinicians taking a chance on curing us with less than "proven" procedures.

    [This message was edited by chastev8 on 07-08-03 at 09:16 AM.]

  6. #6
    Senior Member Max's Avatar
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    Originally posted by cjo:

    I see several parallels with SCI here. I don't know what it's like to be a conjoined twin, but I know that SCI life is hell as well. Even though these girls could die, they don't want to continue with their current physical situation. Why will doctors take this kind of chance with them, but not try a much safer SCI treatment?
    My God!

    What kind of "paralells" you could possibly see here?

    They cojoint in head!?

    They need vein from leg!

    They will be okay!

    They had no injury!

    There will be blood which will kill some brain sells!

    It has nothing to do with sci, exept there are skilful neurosurgeons in EVERY COUNRY OF THE WORLD!

    There is no will from government & big pharmaceiticals to let us walk!

    They make money from our condition......

    Most of us, here, will have irreversible complications from sci until some kind of cure will be available to all(not Cr or other celebrities)

    Possibly by 2010

    Regards,

    Max

  7. #7
    Senior Member Max's Avatar
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    Originally posted by chastev8:

    No Max this belongs here. This speaks to the cure problem. Without wounding too much like DA, this goes to show that we really are getting the short end of the stick when it comes to doctors and clinicians taking a chance on curing us with less than "proven" procedures.
    Chastev,

    Skilled surgeons are IN EVERY COUNTRY!

    There is lack of will from governments to try any therapy for sci!

    Wise once explained why it takes so long....

    I bet most of people here theoretically, if you post the RIGHT POLE, will vote to go for therapy which give them at least 20% of chance of return of some function( I do not speak about walking), and most of us would sign any papers freeing neurosurgeons from future liabilities........(cancer,complications etc)


    BtW

    Who are you?

    Are you sci?

    This info just a publicity stunt, it has nothing to do with search of Cure

    Regards,

    Max

  8. #8
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    Originally posted by Max:

    My God!

    What kind of "paralells" you could possibly see here?
    Max,

    I was originally going to post this in the "Life" section, I didn't for the following reason:

    These twins could live their lives in their current physical condition(just as SCI victims) but they were so unhappy with it that they chose to undergo a life threatening procedure so they could attempt to improve their quality of life. Better yet, they found a team of doctors willing to TRY for them - without FDA approval or years of lab data to back up the efficacy of the trial. This type of surgery has NEVER been done on adults before.

    I am curious to know who funded the surgery.

    As for your "They will be okay!" statement, I already stated that there was a 50% chance that one of them could die during or after the procedure. But, they chose to do it anyway.

    To beat it to death - this parallels with SCI because of the desire to improve a non-life threatening physical condition and having doctors willing to try.

  9. #9
    cjo,

    Last month, I had the honor of interviewing Ben Carson because he received an honorary degree at Rutgers. He is well known for his participation in much publicized cases separating conjoined twins. In 1987, Ben Carson and a 70-member team successfully separated 7-month old conjoined boys from Germany (http://www.hopkinschildrens.org/page...actsheet.html). In 1994, Ben Carson led a 24-member team to separate 7-month old conjoined twins that died from surgical complications. In 1997, he led a 50-member team to separate 11-month old Zambian boys in South Africa and both boys are fine. What he is doing is a surgical feat of great complexity and one that has a high risk of damage to one or the other member of the conjoined twin. This is the first time that this has been attempted in an adult conjoined twin (http://www.hopkinsmedicine.org/press...ne/030612.htm). A craniopagus separation was tried last December in Kasturba Medical College in Attavar and one of member of the twins died. Another case done in Singapore and reported in the December 2002 ASEAN Neurosurgical Nursing Congress, successfuly separating Ganga and Jamuna in a $360,000 operation. There is a debate about the ethics of such surgeries (see http://tx.essortment.com/siamesetwinssu_rmab.htm) because of the risk of the surgery. Cranipagus is fortunately a rare condition, involving only 2% of all conjoined twins and occurring in one of 2.5 million births. About 100 cases of surgical separation of conjoined twins have been reported in the medical literature (http://mypage.direct.ca/c/csamson/mu...conjoined.html) with 75% of the separations resulting in one or both twins surviving.

    The question that you ask is an important one. What is the difference between this surgery and other therapies for spinal cord injuries such as OEG transplantation? Risky surgery and experimental therapy are very different. The surgery to separate craniopagus twins is not experimental. It utilizes well-established neurosurgical techniques. Although the surgery is risky, it has a certain likelihood of success. Risk is not the main reason why surgeries are not done. There are plenty of risky surgeries that are done every day all over the world. For example, the first cardiac transplants had a very high risk of failure, and has a high mortality even today.

    Last year, Vesely & De Almeida (2002) published two very thoughtful articles in UTMJ on Evidence-Based Medicine, Part 1: More than Just a Randomized Controlled Trial and Evidence-Based Medicine, Part 2: The Introduction of New Therapies into Practice where they express sentiments that are not dissimilar to what you express.

    In the first article they talk about the trend for "evidence-based medicine" (EBM) that has progressively taken over the practice of medicine since 1992. Many doctors have questioned the theoretical underpinnings of EBM, particularly the assumption that randomized clinical trials (RCTs) are the only basis for clinical decision-making. For example, EBM concentrates only on clinical trial evidence and dismisses other considerations, including theoretical, animal, ethical, or social data, or qualitative or personal experience. EBM has been criticized as being hypocritical because there is no evidence that EBM itself has significantly improved outcomes of care. The authors point out that much of the controversy arises not because RCTs are not good sources of evidence but because of the doctrinaire position that only RCTs should be considered as acceptable evidence. They point out that RCTs themselves are often imperfectly designed and can lead to misleading results. Methodologically rigorous trials does not guarantee that the conclusions are free from bias.

    I want to interject my own concern with the current trend in EBM. Everybody agrees that if there is rigorous evidence indicating that a therapy does not work, it should not be used. Likewise, everybody agrees that if there is rigorous evidence that a therapy does work, it should be used. However, too many people have extended the dogma of EBM to include the logical fallacy that a therapy should not be used if there is no rigorous evidence for its efficacy.

    What should we do when there is insufficient evidence? As Versely and De Almedia (2002) point out in their second article, "In the case of emerging therapies, evidence is lacking almost by definition". They cited Grimes' point that "as physicians, we are ethically bound to be sure that tests, procedures, and treatments we provide are worth the money, pain and inconvenience they cost". On the other hand, this notion does not preclude application of therapies that are in the judgement of the doctor and patient to be the best therapy based on available evidence, whether it is in the form of RCTs or not.

    Veseley & DeAlmeida suggest the following critera for early application of new treatments:

    1. When the risk of applying new treatment is low:
    <UL TYPE=SQUARE>
    • pathophysiology of disease/condition is well-understood and non-controversial.
    • mechanism of action of treatment is well-understood and non-controversial.
    • proposed treatment is similar to other existing treatments
    • few and minor known or conceivable side effects or adverse reactions
    • "higher quality" evidence is available, albeit not RCT.
    • treatment is cheap.[/list]

    2. When the risk of not applying the new treatment is high:
    <UL TYPE=SQUARE>
    • High mortality/morbidity of disease
    • Rapid disease progression
    • no effective alternative treatment or significant controversy with regards to alternative treatment or discredited "orthodox" treatment.
    • existing treatment has high risks or side effects
    • existing treatment is expensive.[/list]

    It seems to me that OEG transplants fulfil many of the above criteria.

    Wise.

    [This message was edited by Wise Young on 07-08-03 at 12:10 AM.]

  10. #10
    Senior Member chastev8's Avatar
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    Relax Max. This battle is not worth the fight. There is a discrepancy between how doctors and others are approaching these two problems. While I will admit that there really are very few procedures they could do to improve our situation, I think this is due, in a large part, to the apathy and dogma toward SCI.

    And yes I am SCI T-12 non-walking incomplete Oct. 6 2000.

    That was not correct when it was said "They will be okay!" one of them has died so far.

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