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Thread: Open House in Fuzhou

  1. #1

    Open House in Fuzhou

    I just finished an "Open House" in Fuzhou where I spent several emotional hours answering questions. Let me try to summarize some of the questions and my answers here.

    Q: My husband has an L1 complete injury. Will we be able to have a child?
    A: Yes, a majority of men with spinal cord injury have sperm that will produce children. Does he have erections now? [No, but I heard that Viagra helps. Is this true?] Viagra may help. Several studies have shown that Viagra increases both the quality and duration of erections. Let me review three possible scenarios and potential problems. First, if your husband can have erections but does not ejaculate, it may be necessary to use a vibrator to stimulate ejaculation. Second, if the vibrator does not work, it may be possible to use electrical stimulation to stimulate ejaculation. Third, if no ejaculation occurs even with maximum stimulation, it is possible to remove sperm from the testicles and then insert the cells into the woman. Fourth, if the sperm count is low or there are difficulties getting a pregnancy to occur, it may be necessary to do in vitro fertilization by fertilizing the eggs in a dish and then transplanting the egg into the woman. Because your husband's injury is very low, the injury may have affected the part of the spinal cord that controls erection. In that case, Viagra may not be effective. However, there should be fertility clinics that can help you have a child with your husband. Where do you live? [I live in Zhengzhou]. I see, one of our spinal cord injury centers is in Zhengzhou and I will probably be visiting there in the coming months. Perhaps the next time I go there, we can meet your husband.

    Q: My 6-year old daughter had a spinal cord injury at T4 from a gymnastic accident last year. She has a "complete" spinal cord injury and cannot move her legs. Will she be able to recover function from any therapy?
    A: I sincerely hope so. While our clinical trials are not currently addressing pediatric spinal cord injury, I believe that the therapies that are effective for adults should also be useful for children with spinal cord injury. What is her bladder status? (She has an indwelling Foley catheter and has to take antibiotics for multiple urinary tract infections). In the United States, most children with spinal cord injury get surgery called a Mitrafanoff procedure. This procedure takes the appendix and connects the top of the bladder to the umbilicus or belly button. She can then catheterize herself through the belly button to empty her bladder. This procedure significantly reduces the incidence of bladder infections. Indwelling Foley catheters in children are often associated with urinary tract infections and recurrent infections and treatment with antibiotics lead to resistant bacteria and kidney damage. In addition, a majority of children with spinal cord injury, particularly girls, develop scoliosis. When she is about 9 years old, this should be checked with yearly chest x-rays and may require surgical correction. Finally, she needs to exercise to prevent loss of calcium in her bones and muscle atrophy. Is she standing? (Yes, she use to do standing exercises, but she unexpectedly broke her femur in her right leg two months ago. Do you think that she can stand now?). The x-rays show that the fracture is healed. It is likely to be due to low calcium in her bones or osteoporosis. I recommend that she start standing again and swimming as well. While such exercises may not be able to reverse bone loss, it should help maintain her muscles. It is very important that she try to keep her muscles and bone in as good shape as possible so that, when treatments become available, she will be able to take advantage of the therapies.

    Q: My 29-year old brother began to suffer difficulties walking in 1990. The diagnosis is not clear but the doctors said that he had some kind of inflammation of the spine. It seems to me that his condition is worse now. He can only walk when he is supporting his weight against the wall. What is his prognosis?
    A: I am not sure what your brother had. It is possible that he had arachnoiditis resulting from an infection. He needs to have a detailed examination and MRI to find out whether he has two possible treatable conditions: tethering of the spinal roots and syringomyelic cyst. If the roots are tethered, he may benefit from surgery to untether the spinal cord. If he has a syringomyelic cyst, he may benefit from surgery to remove adhesions between the spinal cord and surrounding arachnoid. This may collapse the cyst and stop deterioration of function. I am sorry but we do not have other therapies that may help your brother at the present.

    Q: I had a cervical spinal injury at C5 from a hemorrhage from an arteriovenous malformation (AVM). I have recovered a great deal of function, especially on my right side but my left side continues to be weaker than the left. I have been standing and trying to walk but I feel this heavy pressure on my chest and my body feels like it is dipped in hot pepper. Do you think that I have AVM's in other parts of my body or in my brain? Should I get x-rays to find out?
    A: What you describe sounds like neuropathic pain. While there are not many good treatments for neuropathic pain, the following two drugs may be helpful. The first drug is amitriptyline, also called Elavil. At relatively low doses of 20 mg per day, the drug has been reported to reduce the hot pepper sensation that you describe. It will not eliminate the pain but it should reduce the intensity of the sensations. The second drug is gabapentin, also called Neurontin. This drug may reduce certain types of neuropathic pain, like the pressure sensation that you describe. With regard to your weakness, you may want to consider a drug called 4-aminopyridine or Fampridine. This drug increases the excitability of demyelinated nerve fibers and increases the strength and endurance of partially paralyzed muscles. [Does this drug have side effects?] Yes, this drug does have side effects, including nervousness and difficulty sleeping when the drug is first started, but these side effects should go away from you become accustomed to taking the drug. [Does it have bad effects on the liver and heart?] To my knowledge, it does not. Fampridine is available from compounding pharmacies in the United States. I don't know if it is available in China although some compounding pharmacies in the United States will mail you the drug if you order it through internet. However, before you take the drug, you need to have an experienced doctor supervise. A company by the name of Acorda Therapeutics is trying to get this drug approved by the US FDA. I hope that it will be approved early next year and then it would be available through regular channels. Finally, regarding your AVM, to assess your brain and spinal cord for the presence of further AVMs, you need to have an angiogram. The important question is what can be done if the test discovers that you still have an AVM in your spinal cord and brain. Surgical treatment of AVMs is riskier than the risk of the AVM bleeding again. However, there are doctors in the United States who can treat AVM's without surgery, by inserting tubes into the AVM through blood vessels and occluding the AVM with materials or emboli. I don't know whether there are any doctors in China who do this but there should be some.

    Q: I have been injured for 10 years. I am incomplete and I have been walking every day. I cannot lift my feet. However, my knee extensors (quadriceps) are weaker than my foot extensor (gastrocnemius) and I have little or no foot dorsiflexion on both sides. How is this possible? I thought that the more distal muscles are represented by the lower spinal cord.
    A: What was your level of injury? [T11/T12.] I will have to write you a detailed description. Your spinal cord ends at L1. Parts of your spinal cord represent each segmental level is located higher than the actual vertebral level. So, for example, all of the sacral spinal cord segments are at L1. The lumbar segments are located at the T11 and T12 vertebrae level. Your quadriceps is represented by L3 while your ankle dorsiflexors are represented by L4 and ankle plantar flexors are represented by S1. You are correct that your ankle plantar flexors are represented lower on your spinal cord (S1) than your ankle dorsiflexors (L4). It indeed seems paradoxical that your S1 should be stronger than your L4. However, your L4 spinal cord and spinal root is located at T11/12. This is where your injury was located. You may have injured your L4 root and had a partial injury of your L3/4 spinal cord, which would explain your weak quadriceps as well.

    Q. On CareCure, you had spoken about starting the phase three clinical trial in 2007. What is the delay due to?
    A: I am afraid that it is my fault. I was speaking from the heart and not from the brain. I hoped that we would be able to move the clinical trials faster. There were several delays that I had not anticipated. First, we have to raise the money for the clinical trials. When we started ChinaSCINet, I had estimated that we needed US$6 million to develop the infrastructure and to initiate phase 1, 2, and 3 trials. We have raised about half of that amount to date from Hong Kong. Second, there has been greater regulation of clinical trials in China since 2004. When we started, China did not regulate clinical trials to the same extent. Now, we must follow the highest good clinical practice (GCP) standards in the clinical trials and both the State Food and Drug Administration and the Ministry of Health must approve the therapies. The amount of data needed for approval of treatments is greater. Third, the centers need time to train and to complete their initial observational trials. These have taken longer than we thought. Now, I must point out that we have set out a very ambitious schedule in the ChinaSCINet. For comparison, let me point out that it took us 10 years to move high-dose methylprednisolone from the first Phase 1 safety trial (1980) to completion of our phase 3 clinical trial (1990). In contrast, we have just started our phase 1 lithium trial (2007) and plan to complete our phase 3 cord blood mononuclear cell transplant and lithium trial in (2009). If we are successful in this endeavor, we will have broken all the speed records for clinical trials, taking two therapies through phase 1, 2, and 3 trials in three years.

    Q. What can we do to help?
    A. We need your help in overcoming three obstacles to rapid progress in the ChinaSCINet. The first is money. We don't have enough money to be able to carry out the clinical trials in parallel. We can do it only in sequence right now. For example, if we do twelve trials at a time, we can test many more therapies. The second obstacle is the lack of a clinical trial culture in China. Most Chinese do not understand clinical trials. It took us three years to persuade the doctors that they need to work together to test experimental therapies rigorously in controlled clinical trials. The spinal cord injury community should understand the need for such clinical trials and help us get the trials through. The third is the lack of voice by the community that could influence government, companies, and other people regarding the importance of curing spinal cord injury. CareCure is an example of the growing voice of the spinal cord injury community in the United States. They are now able to influence politicians and enable policies and funding that is more favorable to the cure. The spinal cord injury community in China must do the same.
    Last edited by Wise Young; 12-11-2007 at 11:16 AM.

  2. #2
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    "In contrast, we have just started our phase 1 lithium trial (2007) and plan to complete our phase 3 cord blood mononuclear cell transplant and lithium trial in (2009). If we are successful in this endeavor, we will have broken all the speed records for clinical trials, taking two therapies through phase 1, 2, and 3 trials in three years."

    An incredible time frame!
    Thank you for persevering on our behalf!! Do donations go to the ChinaSCINet or to the HKU SCI Fund?

  3. #3
    Quote Originally Posted by The mom
    "In contrast, we have just started our phase 1 lithium trial (2007) and plan to complete our phase 3 cord blood mononuclear cell transplant and lithium trial in (2009). If we are successful in this endeavor, we will have broken all the speed records for clinical trials, taking two therapies through phase 1, 2, and 3 trials in three years."

    An incredible time frame!
    Thank you for persevering on our behalf!! Do donations go to the ChinaSCINet or to the HKU SCI Fund?
    We have started a new organization called the Hong Kong SCI Fund which can be accessed at
    http://www.hkscifund.org/index.php?o...mid=33&lang=en

    http://www.chinascinet.org/

    Wise.

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