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Thread: ASAS Following Recoarctation of Aorta

  1. #1

    ASAS Following Recoarctation of Aorta

    I am new to the forum, but since I have been browsing, I like what I see. I would appreciate some information regarding anterior spinal artery syndrome occurring post-operatively in a repair of aortic re-coarctation. I was treated for this 7 yrs ago and this possibility/complication was not explained to me at the time. I had my original coarctation repaired at the age of 3 and the second at 23. Since the original injury, I have slowly been getting return, but not enough to functionally ambulate.

    In addition, I have been accepted by Dr. Huang in China to try the OEC transplant procedure on the cord atrophy and see if it helps. I would like to hear of any feedback on long-term prognoses of patients with ASAS of similar etiology as well as thoughts regarding the likelihood of OEC transplantation to affect this type of injury, since it is atraumatic. Any assistance would be greatly appreciated.

  2. #2
    Super Moderator Sue Pendleton's Avatar
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    Quote Originally Posted by mark75
    I am new to the forum, but since I have been browsing, I like what I see. I would appreciate some information regarding anterior spinal artery syndrome occurring post-operatively in a repair of aortic re-coarctation. I was treated for this 7 yrs ago and this possibility/complication was not explained to me at the time. I had my original coarctation repaired at the age of 3 and the second at 23. Since the original injury, I have slowly been getting return, but not enough to functionally ambulate.

    In addition, I have been accepted by Dr. Huang in China to try the OEC transplant procedure on the cord atrophy and see if it helps. I would like to hear of any feedback on long-term prognoses of patients with ASAS of similar etiology as well as thoughts regarding the likelihood of OEC transplantation to affect this type of injury, since it is atraumatic. Any assistance would be greatly appreciated.
    How about the second question first? And welcome to CareCure, Mark! Non-tramatic injuries that result in ASAS normally effect the myelin sheathing more than the gray matter in the spinal cord. Current research and recent publications have me believing that OEGs will help remyelination most. It also appears that non-traumatic syndromes leave less of a scar to deal with and more and more researchers are showing less fear of the "big bad scar" than in the past. You have a recent MRI that shows cord atrophy?

    Now on to "coarctation"? Totally new term for me. Cross clamping of the aortas during heart surgery can cause ischemic injuries if the clamps are on too long. How long is too long varies as does the extent of any injury resulting from the surgry to correct the heart problem. Sometime in our third year is when most children quit producing myelin. Damage to the white matter before that age often resolves by itself and PT helps in correcting walking stance and gait.

    http://www.heartpoint.com/congcoarct.html

    The above link has a clear picture and explaination of the term. It would appear that the narrowed part of your artery needed to be removed. If this artery also fed the spinal cord then I can see how paralysis can be a posible side effect. Many women who have had epidurals dring labor and delivery would also swear they did not get any warnings of rare occurances of paralysis from this type of anesthesia. My guess is unlike with most heart surgeries where cross clapping is common so the doctor would explain the possibilities of paralysis and other complications; coarctation looks like it would be less likely to cause paralysis. But, as with any surgery involving a vascular surgeon, you probably did sign off on a long sheet of possible but rare outcomes from the surgery, anesthesia and just being stuck in bed for longer than you normally are.

    If you are sure no one listed this as a possible complication, long term side effect or short term problem; then I would ask for copies of your medical records.

    Can I ask at what level your normal sensation and movement end? Have you had continual but very slow recovery? I sat up using my stomach muscles for the first time after about 8 years of PT. I lost that after prolonged bedrest due to a sore. I'm almost back to all the way up again though. So, continue with PT while waiting to see Dr Huang. Have you tried 4-aminopyridine? 4-AP has helped quite a few incompletes and as long as your vascular doctor ok's it any of your doctor's can prescribe it and then get it filled at a compounding pharmacy.

    I, for one, would love to hear how Dr Huang's use of OEGs works on atraumatic injuries. Are the OEGs fetal or umbilical or your own?

    This is the first time I've heard of ASAS from your problem. I'll ask Dr Young to take a look at your post. Could the paralysis be due to the high blood pressure or kidney problems?
    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.

  3. #3
    Thank you for your reply, Sue. I'll relate what I know about the etiology of my case and I would love to hear what you and Dr. Young, whose work I have admired for some time now, advise.

    When an infant is born with my type of coarctation of the aorta, typically, the body will produce collateral vessels to compensate for the lack of blood caused by the CoA. Therefore, if the CoA is untreated until, say young adulthood, the surgeon can usually clamp off the aorta safely because of the collaterals. However, if the CoA is repaired at such a young age, then the collaterals are no longer needed, and they usually go away, or at the least, fail to develop any further. In my first repair, an end-to-end anastomosis was performed on the aorta. Then, when I reached young adulthood, the scar tissue from the original surgery created a re-CoA because scar tissue doesn't grow with the rest of the artery. Because of the lack of collaterals due to the first repair, my aorta was just like an average adult aorta - no collaterals. My aorta was cross-clamped for 1 hr 33 min. No distal perfusion was provided, creating an ischemic injury to the anterior distal portion of my cord via the Artery of Adamkowitz. We actually were not informed of this risk, legal litigation followed, it was an open-shut case. However, I was left with the problem that can't be fixed in a courtroom - ASAS. I had from the beginning, full pressure sensation all the way down. I could detect a change in sensation at approximately the T-8 level. However, I had no motor function at all below T-10. Within 1 year, after intense PT, I was able to ambulate using two ankle-to-knee AFO's and forearm crutches. However, it is not yet functional. Now, 7 years later, I am still getting return, albeit very slowly. For example, I have enough temperature sensation now all the way down so that I can avoid injuries like scalding myself in a hot bath/shower. I recently had an MRI about 1 month ago which showed very little cord atrophy starting at about T-10; this was very different from the MRI's taken within a few weeks of the injury which showed significant atrophy.

    Ironically, all this happened as I was on my way to medical school at the University of TN. The re-myelinization of the cord axons are precisely why I decided to pursue the OEG procedure. The OEG's are fetal, incidentally. I would love to interact with you all regarding my case and this procedure, especially before I have it done next October. Any case studies you can find would be much appreciated regarding ASAS following repair of CoA.

  4. #4
    Mark,

    I don't have much time to respond fully but you should be aware that the OEG that are transplanted may be rejected immunologically over time. An alternative is to use your own Schwann cells which are known to remyelinate the spinal cord.

    Wise.

  5. #5
    Quote Originally Posted by Wise Young
    Mark,

    I don't have much time to respond fully but you should be aware that the OEG that are transplanted may be rejected immunologically over time. An alternative is to use your own Schwann cells which are known to remyelinate the spinal cord.

    Wise.
    Dr. Young,

    First, thank you for responding. I have checked into Lisbon's program as well as a couple of other countries that were brought to my attention, and I don't meet their criteria for doing the OEG procedure. It seems that no one wants to attempt the procedure on an ASAS patient 7 yrs out from injury. As you know, Dr. Huang in China, who was the only one to accept me as a candidate, only uses fetal cells. Do you have any locations that I should check into? Also, I may be misreading your response, but it sort of sounds as though you have reservations about the fetal cell OEC treatment of Dr. Huang in my particular situation. I would much appreciate your thoughts fully on that. Thank you for your time.

    Mark

  6. #6
    Mark,

    In your case, you want to have cells that myelinate axons. You would not these cells to be immunologically rejected after they have myelinated the axons. For regeneration, the cells may serve as a bridge for a couple months and the axons grow across. After they have done their jobs, the cells can go away. In your case, you don't want them to go away. At the present, Dr. Huang does not use immunosuppression. When he transplanted OEG cells, they are from embryos that do not have matched HLA antigens. Therefore, they may be rejected. That is what I was referring to.

    Wise.

    Quote Originally Posted by mark75
    Dr. Young,

    First, thank you for responding. I have checked into Lisbon's program as well as a couple of other countries that were brought to my attention, and I don't meet their criteria for doing the OEG procedure. It seems that no one wants to attempt the procedure on an ASAS patient 7 yrs out from injury. As you know, Dr. Huang in China, who was the only one to accept me as a candidate, only uses fetal cells. Do you have any locations that I should check into? Also, I may be misreading your response, but it sort of sounds as though you have reservations about the fetal cell OEC treatment of Dr. Huang in my particular situation. I would much appreciate your thoughts fully on that. Thank you for your time.

    Mark

  7. #7
    I understand what you are saying; as you are probably aware, Dr. Huang claims that fetal cells are so undifferentiated that they are not very likely to trigger an immunological rejection by one's body. Besides his program in China, are you aware of anyone else that would attempt the same procedure using my own OEG's? I am having a difficult time in finding anyone that wants to work with anything other than traumatic injuries. That seems to be the popular topic of the day, but there are many of us with SCI that are atraumatic.

  8. #8
    Quote Originally Posted by mark75
    I understand what you are saying; as you are probably aware, Dr. Huang claims that fetal cells are so undifferentiated that they are not very likely to trigger an immunological rejection by one's body. Besides his program in China, are you aware of anyone else that would attempt the same procedure using my own OEG's? I am having a difficult time in finding anyone that wants to work with anything other than traumatic injuries. That seems to be the popular topic of the day, but there are many of us with SCI that are atraumatic.
    Mark, I don't think that Dr. Huang's procedure is harmful. At the present, I think that the hypothesis that translanted unmatched fetal OEG cells are not rejected is untested. Wise.

  9. #9
    Dr. Young, Thank you for the clarification. I have read in an article that you have actually interacted with Dr. Huang and have also been to China to see his procedure and its results. I basically understood your quote to say that there is no denying the results; however, the recovery time being so fast indicates that this cannot be cord regeneration. Therefore the actual mechanism at work is unknown at this time.

    I am scheduled to have this procedure in Oct. of 2006, possibly earlier if there are cancellations. Dr. Huang has looked at my MRI from last month and said that there was minimal atrophy to the cord, so he did not know how much return I would experience. Could you elaborate a bit on this logic for me? I do not understand the connection between the amount of atrophy and regaining motor return. I am not overly anxious to "jump" into any procedure unless I understand the "in's and out's" behind the procedure. You have said elsewhere that only 10% re-growth in the cord can restore most major functions of the body. I have to admit that I have just sort of lived with my condition for 7 yrs and haven't really had time to research and explore all these questions. I would just like an outside opinion regarding Dr. Huang's work from someone who is familiar with it. I don't think that I am eligible for any of the other programs that use autologous OEG's. At present, Dr. Huang is the only one who has accepted me as a candidate. You thoughts would be very much appreciated.

    Mark

  10. #10
    Mark,

    I don't know whether you will get recovery from this procedure. The fact that you have no cord atrophy is good. I suspect that this may be what Dr. Huang means as well and the linkage between his statement that you do not have cord atrophy and the fact that he does not know may not be intentional. Have you read the other posts that I have made concerning OEG transplantation?

    Wise.



    Quote Originally Posted by mark75
    Dr. Young, Thank you for the clarification. I have read in an article that you have actually interacted with Dr. Huang and have also been to China to see his procedure and its results. I basically understood your quote to say that there is no denying the results; however, the recovery time being so fast indicates that this cannot be cord regeneration. Therefore the actual mechanism at work is unknown at this time.

    I am scheduled to have this procedure in Oct. of 2006, possibly earlier if there are cancellations. Dr. Huang has looked at my MRI from last month and said that there was minimal atrophy to the cord, so he did not know how much return I would experience. Could you elaborate a bit on this logic for me? I do not understand the connection between the amount of atrophy and regaining motor return. I am not overly anxious to "jump" into any procedure unless I understand the "in's and out's" behind the procedure. You have said elsewhere that only 10% re-growth in the cord can restore most major functions of the body. I have to admit that I have just sort of lived with my condition for 7 yrs and haven't really had time to research and explore all these questions. I would just like an outside opinion regarding Dr. Huang's work from someone who is familiar with it. I don't think that I am eligible for any of the other programs that use autologous OEG's. At present, Dr. Huang is the only one who has accepted me as a candidate. You thoughts would be very much appreciated.

    Mark

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