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Thread: Spina Bifida - Conus Lipoma

  1. #1

    Spina Bifida - Conus Lipoma

    Dear Dr. Young,

    My 6 months old daughter had undergone untethering operation last month on 23 Feb since she has been diagnosed with low lying cord (S1) with a syrinx, The conus lipoma could not be completely removed but instead being debulked from 2.6cm to 1.2cm since there are some nerve root attached to the left portion under EMG monitoring. After the surgery, surgeon reported that the cord was completely untethered and the rest of the lipoma was wrapped up by 7/0 suturing. However, the bladder function was lost in the first 2 weeks (retention) but regained afterwards. Sphincter and bowel function was also disturbed in the first weeks but gradually regained now to once everyday.

    Legs motor function are both normal pre and post-operatively. There is a large syrinx found across L1-L4 which the surgeon believed it was attributed to the tention of the tethering and need not to be treated in this stage. If we want to have a better monitoring the situation of my daughter, what is your recommendation on how often we should arrange the follow up MRI to see (1) whether there is re-tetethering (2) size of syrinx (3) size of the lipoma?

    Are the 3 problems I stated above the only factors may create late deterioration in my daughter's case? Can MRI or any technologies can diagnose re-tethering? If the syrinx in the next MRI did'nt change or decrease in size, does it mean the the cord was untethered? Will the rest of the lipoma grows again and produce mass effect and decompress the nerve root in the future? Are there any difference in symptoms from the above 3 factors?

    Thanks and need your urgent advise,

    Best Regards,

    Jack

  2. #2
    Quote Originally Posted by jack Yim View Post
    Dear Dr. Young,

    My 6 months old daughter had undergone untethering operation last month on 23 Feb since she has been diagnosed with low lying cord (S1) with a syrinx, The conus lipoma could not be completely removed but instead being debulked from 2.6cm to 1.2cm since there are some nerve root attached to the left portion under EMG monitoring. After the surgery, surgeon reported that the cord was completely untethered and the rest of the lipoma was wrapped up by 7/0 suturing. However, the bladder function was lost in the first 2 weeks (retention) but regained afterwards. Sphincter and bowel function was also disturbed in the first weeks but gradually regained now to once everyday.

    Legs motor function are both normal pre and post-operatively. There is a large syrinx found across L1-L4 which the surgeon believed it was attributed to the tention of the tethering and need not to be treated in this stage. If we want to have a better monitoring the situation of my daughter, what is your recommendation on how often we should arrange the follow up MRI to see (1) whether there is re-tetethering (2) size of syrinx (3) size of the lipoma?

    Are the 3 problems I stated above the only factors may create late deterioration in my daughter's case? Can MRI or any technologies can diagnose re-tethering? If the syrinx in the next MRI did'nt change or decrease in size, does it mean the the cord was untethered? Will the rest of the lipoma grows again and produce mass effect and decompress the nerve root in the future? Are there any difference in symptoms from the above 3 factors?

    Thanks and need your urgent advise,

    Best Regards,

    Jack
    Jack,

    While MRI often may not show retethering, it would show the syringomyelic cyst and any compression of the cord. It would also show the lipoma clearly. So, I would probably get the MRI annually for the first few years and then further apart after that. I hope that this will be last of this and the problem goes away.

    Wise.

  3. #3

    Spina Bifida - Conus Lipoma

    Thanks very much for your reply Dr. Young,

    I have come across some of your suggested articles into your forum. And some of the MRI namely Phase MRI ; Prone and Supine MRI. Are these 2 applications can show the motion and movement of the spinal cord so that can tell something about whether the cord is freely moving within?

    Besides, for those Spina Bifida related foot deformity issue such as Valgus which is developed due to neurologic muscle weakness. So is it common to see Spina Bifida Bady before the age of 6 months to develop this because I saw my daughter got some valgus? Or it is still normal in this stage before the kid learn walking? If the valgus is created because of the tethered cord, Will the problem corrected automatically after untethering surgery?

    Finally, now nearly 6 weeks after the surgery, the wound originally healed very well without CFS leakage as well as infection. But one week ago, I saw a black spot right on the midline of the wound and the nurse said it is the suture at the base went upward because of suture allegy of my daughter. I read some of related articles which may cause infection and can last for few months? What should we do for this. I can't imagine how bad the situation if we need to open it up to remove the suture behind in another operation?

    Best Regards,

    Jack

  4. #4
    Quote Originally Posted by jack Yim View Post
    Thanks very much for your reply Dr. Young,

    I have come across some of your suggested articles into your forum. And some of the MRI namely Phase MRI ; Prone and Supine MRI. Are these 2 applications can show the motion and movement of the spinal cord so that can tell something about whether the cord is freely moving within?

    Besides, for those Spina Bifida related foot deformity issue such as Valgus which is developed due to neurologic muscle weakness. So is it common to see Spina Bifida Bady before the age of 6 months to develop this because I saw my daughter got some valgus? Or it is still normal in this stage before the kid learn walking? If the valgus is created because of the tethered cord, Will the problem corrected automatically after untethering surgery?

    Finally, now nearly 6 weeks after the surgery, the wound originally healed very well without CFS leakage as well as infection. But one week ago, I saw a black spot right on the midline of the wound and the nurse said it is the suture at the base went upward because of suture allegy of my daughter. I read some of related articles which may cause infection and can last for few months? What should we do for this. I can't imagine how bad the situation if we need to open it up to remove the suture behind in another operation?

    Best Regards,

    Jack
    Jack, it is hard to judge from your description of the suture but you need to talk to the surgeon about this. To me, a "black spot" does not necessarily mean that it is a suture and much depends on where this is. If it is in subcutaneous or skin layer, I would probably leave it alone. Much depends on what kind of suture it is. If it is biodegradable suture, it may just go away. If it is not biodegradable, usually such permanent sutures do not cause allergic responses. Finally, opening up of a skin scar to remove a suture is a trivial office procedure.

    Regarding valgus development, it may not be related to tethering or untethering. Spinal bifida is often associated with abnormal development of the spinal cord and there may be imbalance of motor innervation leading to the valgus deformity. There are ways of dealing with such feet without spinal cord surgery and I am not sure that untethering will change the outcome.

    Wise.

  5. #5
    Dear Dr. Young

    Thank you for your reply, we had just finished the following up appointment last week. The suture had sinked down and the surgeon said it was biodegradable one so we just need to wait them go away by themselve but it made the scar bit bigger though. For the valgus issue he believed it is too early to say the kid is suffering for that because the joint is still quite flexible in this stage. Besides, he said most tendon tight causing valgus in SB children is inner not outer one.

    One more issue had been identified, unluckily, which may, not may not relate to SB, is he found there are 2 very mild constriction bands lie over her right foot which cause some swollening of her leg. But he said as long as it doesn't create problems to the blood supply and the nerve then we just leave it alone and keep monitoring the situation. Do you have any ideas about this band happened in SB children?

    Nevertheless, the following up MRI can only be available after 1.5 year that means at her age about 2. It seems but late and I may consider to employ a private service to do so.

  6. #6
    Quote Originally Posted by jack Yim View Post
    Dear Dr. Young

    Thank you for your reply, we had just finished the following up appointment last week. The suture had sinked down and the surgeon said it was biodegradable one so we just need to wait them go away by themselve but it made the scar bit bigger though. For the valgus issue he believed it is too early to say the kid is suffering for that because the joint is still quite flexible in this stage. Besides, he said most tendon tight causing valgus in SB children is inner not outer one.

    One more issue had been identified, unluckily, which may, not may not relate to SB, is he found there are 2 very mild constriction bands lie over her right foot which cause some swollening of her leg. But he said as long as it doesn't create problems to the blood supply and the nerve then we just leave it alone and keep monitoring the situation. Do you have any ideas about this band happened in SB children?

    Nevertheless, the following up MRI can only be available after 1.5 year that means at her age about 2. It seems but late and I may consider to employ a private service to do so.
    I agree with her doctor, to monitor the situation and take action only when necessary concerning the suture and her valgus.

    Regarding getting an earlier MRI, I don't think that it would do any harm to get one.

    Wise.

  7. #7
    Hi Wise,

    Long time haven't updated the situation of mu daughter, hope u still remembered her. She was performed the conus lipoma removal surgery 5 months ago. Yestersday we performed the follow up MRI and the report worries up pretty much. The report said everything unchanged, the cord is still low lying atL5-S1, lipoma size no change. And the large syrinx extending from T12 to L4 was still there. Though the report said the syrinx size has no significant change in size. But I watched the MRI images it seemed get a very little bigger compared with the one that just after the surgery.

    She still quite ok and I could not see any deterioration and symptoms at this moment. But I read some case studies that syrinx symptoms can onset quite quickly and stunt it out results were satisfactory. Do you suggest we should drain the fluid out as the syrinx is very large.

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