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    Advice on tethered cord/neurogenic bladder and spinal lipoma

    Hello, CareCure Community. I'm new here, and this is my inaugural post. I have some questions for Dr. Wise (below), but would appreciate feedback from anyone here. Please bear with me on the length of this post?I tried to be as brief as possible, but wanted to provide the relevant background info. Thanks in advance for reading.

    • I'm a male in my early 30s who was recently diagnosed with tethered cord involving a thickened/fattened filum terminale with filum lipoma. I had no history of spinal cord injury or any neurological symptoms (at least none significant enough for me to realize they were symptoms) before this, and led an extremely active life (intense daily exercise, demanding job, etc.).


    • I began to notice issues with urinary retention late last year following an unrelated ruptured appendix, appendectomy, and hospital stay. I presented to a urologist and was informed that I had nearly a liter of urine in my bladder and had neurogenic bladder (with a very distended/trabeculated bladder), which was very surprising and disconcerting (esp. the potential for kidney damage), since I thought I was in great health.


    • An MRI of my spine was ordered, which showed a tethered cord due to a thickened/fatty filum and a low-lying conus (thecal sac extending into S2-3 area). It appears that this is a congenital condition (neural tube defect), but I have not been told that I have any bony abnormalities or traditional ?spina bifida.?


    • I soon discussed my history and MRI with a pediatric neurosurgeon, realizing that there were several signs of tethered cord/spinal dysraphism in my past, including a cutaneous/skin tag on my lower back (surgically removed when I was an infant) and more recent issues with bowel urgency, weakened leg strength, weakened urine stream, and sexual function impairment. We agreed that tethered cord release surgery (sectioning the fatty filum terminale) was advisable to prevent further deterioration, and hopefully, restore some function.


    • The tethered cord release surgery was performed in December of last year. Since then, my function hasn't really improved much. I've been self-catherizing 4 times/day (around 40% void/60% cath daily) and haven?t seen much improvement in catherization volumes, bowel issues (managing with high fiber diet and some Miralax), or sexual function (need Viagra most of the time).


    • My neurosurgeon suggested a one-year follow up appointment and did not suggest an MRI (noting that an MRI would show tethering/scarring, but the tethering is very unlikely to be ?symptomatic), but said to call if I have any worsening symptoms.


    • I also discovered in the operative report that I had a "large terminal lipoma" or "conus/lipoma complex"--my understanding before this had been that the filum was thickened, but the operative report suggested the lipoma may be at the conus level or transitional (not limited to the filum), which was concerning. The report says: "Inspection of the intradural contents showed the distal spinal cord to be infiltrated with fat which extended causally into expansile lipomatous tissue with some fibrous tissue and possible nerve roots adherent to the lateral margins of the conus/filum structure."


    • In addition, my surgeon informed me after the surgery that there was nerve damage to S3-S5 nerve roots on the right (no response generated by neurophysiological monitoring), but the other nerves appeared to give a response. Excerpt from report: ?On the right side, roots were identified along the lateral aspect of the conus/lipoma complex, and these were stimulated and found not to carry sphincter potentials even at baseline prior to any manipulation.?


    • I questioned my surgeon regarding the nerve damage (whether she could give further prognostic information based on this), and whether the lipoma was causing any tethering--she essentially said no on both. However, I?m seeking a second opinion now with another pediatric neurosurgeon to ensure that the surgery was done properly and to do everything I can to monitor/manage/treat my condition.


    • I also recently had an MRI done (ordered by new surgeon), which showed "mild clumping of nerve roots along the periphery of the thecal sac about the lumbosacral junction," "subtle enhancement also seen in this region," and "question arachnoid adhesions." From the operative report, it sounds like the clumping of nerve roots was already present before the surgery, and the ?questioned? arachnoid adhesions may just be the post-surgical scarring that my surgeon expected, but I?m not sure.


    A few questions:

    1. Based on the above, do you have any suggestions regarding prognosis and chance of recovering function?
    2. Also, what is the chance of worsening function and retethering? I noticed some of your older posts where you noted the importance of proper material to repair the dura and prevent inflammation. Surgicel material was used here?what are your thoughts on that?
    3. Although my surgeon said she completely untethered the cord, I?m concerned about the description of the large/extensive lipoma (?infiltrating the distal spinal cord?) from the operative report. This sounds different to me than simply a fatty filum and perhaps it should be removed before it grows further. Any suggestions on this?
    4. Does the "mild clumping of nerve roots" and "question arachnoid adhesions" from my recent MRI sound concerning? It could be that the radiologist just didn't know my complete clinical history.
    5. I, of course, don?t want to have undergo another surgery if I don?t need one, but would do so if it?s necessary. Any suggestions on seeking a second opinion in this situation?
    6. Any new research developments or potential cures that would apply in my situation?
    7. Any suggestions on what to do here diagnostically to ensure optimal management of my condition (high-resolution MRI, fMRI, cine MRI, CT myelogram, etc.)?
    8. I?ve read that tethering of the spinal cord could cause syringomyelia or Chiari formation. I don?t think I have either and haven?t been told I do, but perhaps imaging should be done to confirm this?


    Thanks very much. I appreciate your input.
    Last edited by Tethered82; 13 Apr 2015, 9:27 AM.

    #2
    I will ask Dr. Young to weigh in on these questions when he has time, but that may be some days depending on how busy he is.

    Meanwhile, I hope you are working with a good neurologic urologist on your bladder management, getting annual urodynamics, and correctly managing your intermittent catheterization. How are you bowels? Are you continent?? Are you following a bowel evacuation program that keeps you from having bowel accidents? It is good that Viagra works for you, but that may not continue of you have worsening damage to your sacral cord or roots. You should work on options for this if needed with the urologist as well.

    (KLD)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

    Comment


      #3
      Neurosurgeons recommend follow up one year for the nerves to "heal" before they consider other treatments/ surgeries etc..
      CWO
      The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

      Comment


        #4
        Thanks for much for your response and advice. I'm scheduled to see a neuro-urologist in a couple weeks, though I did see a voiding specialist in December before the tethered cord release surgery and had urodynamic testing done. The urodynamic testing results showed a neurogenic/acontractile bladder, with mild detrusor overactivity (not dangerously high, but apparently manageable with regular cathing). Also, the neurosurgeon I'm getting a second opinion from soon suggests urodynamic testing 6 months after surgery, which would be in June.

        My bowels are okay, but not great. I'm continent and don't have bowel accidents, though I do have constipation (which makes me anxious, and backs up, leading to urgency/anxiety at times). I saw a local GI specialist, who diagnosed me with IBS-primary constipation (a vague diagnosis that doesn't account for my nerve damage/tethered cord)--he recommended a moderately high fiber diet (around 20 grams/day) and Miralax daily. I'm trying to manage this more effectively, since it's uncomfortable at times, and am scheduled to see a neuro-GI specialist in June.

        I am concerned about potential worsening nerve damage, so I'm trying to monitor my symptoms. My wife and I are trying to have kids soon as well, so we're hoping this won't interfere with that. My surgeon expected neurological improvement, but as noted above, I haven't really seen much yet, perhaps because the damage had been ongoing for years without me knowing it. If you or Dr. Young have other suggestions on what can be done here (diagnostically, treatment/management-wise, or prognostically), please let me know.
        Last edited by Tethered82; 13 Apr 2015, 6:54 PM.

        Comment


          #5
          Originally posted by SCI-Nurse View Post
          Neurosurgeons recommend follow up one year for the nerves to "heal" before they consider other treatments/ surgeries etc..
          CWO
          Thanks for the response. I can understand why the neurosurgeon would want to wait a year for follow up--this may explain that reasoning. However, the new neurosurgeon I'm consulting with normally schedules a 3-month follow up appointment and MRI, along with urodynamic testing 6 months after surgery. This more active approach makes sense to me, given that I'm trying to stay on top of everything here and ensure there's no further deterioration--I'd rather be safe than sorry.

          Comment


            #6
            Hi,

            You got a situation the same as my daughter. It is one kind of Spina Bifida. From what you say I believed it is conus lipoma. For the improvement after the untethering surgery, mostly seen 3-6 months afterwards and said to be maximum at 1 year time post-op. But very unfortunately, bladder and bowel are the worse response to the surgery, only 15-20% of patient will have improvement on Bladder and Bowel after the surgery. The younger the patient, the more likely the surgery could bring improvement.

            Retethering rate for conus lipoma is very high, depend on many factors, such as dura material, whether the neurosurgeon could remove the whole lipoma, and whether the neurosurgeon could clean up all blood before closure and whether the neurosurgeon could create a large space of dura sac to prevent adhesion etc...

            Hope this help.

            Comment


              #7
              Do you have any suggestions regarding physical activity? Before my surgery, I was extremely active (intense daily workouts involving cardio and weightlifting, walking often, etc.).

              Since the surgery, I have been keeping up with my daily workouts, but at a lesser intensity, and I took a couple weeks off after the surgery. My surgeon basically said don't lift anything too heavy that will strain your back for a few weeks, but physical activity as tolerated would be okay after that.

              It's been 4 months since the surgery now, and I've been increasing the intensity of my workouts, but still avoiding very heavy lifting or straining my back. I don't want to cause scarring/retethering, but at the same time, my physical activity could help to preserve nerve function. Thanks.

              Comment


                #8
                Thanks for your response. Yes--I agree that it sounds like I have a conus lipoma. My surgeon gave me the initial impression that the lipoma was only a filum lipoma, which are easier to untether, with fewer complications. But after the surgery, I found out that the lipoma also seemed to be at the conus level (or perhaps a "transitional" lipoma).

                My surgeon only untethered the filum and did not remove the lipoma itself, which concerns me. However, she said the cord was completely untethered and the lipoma was not causing tethering above the filum. She also said it's likely that the cord will "retether," but very unlikely that there will be "symptomatic retethering."

                I've read that the chance of retethering in adults is much lower than for children (because adults have stopped growing), but the potential recovery is also more limited. And in my case, I'm not sure what the real chance of retethering or worsening of function is.

                The dura material used was Surgicel. Is this a good choice, and what did they use for your daughter's surgery?

                Has your daughter had much improvement and how long has it been since the surgery? I assume her chances of improvement are much better than mine because I've had this for so long without even knowing it.

                Originally posted by jack Yim View Post
                Hi,

                You got a situation the same as my daughter. It is one kind of Spina Bifida. From what you say I believed it is conus lipoma. For the improvement after the untethering surgery, mostly seen 3-6 months afterwards and said to be maximum at 1 year time post-op. But very unfortunately, bladder and bowel are the worse response to the surgery, only 15-20% of patient will have improvement on Bladder and Bowel after the surgery. The younger the patient, the more likely the surgery could bring improvement.

                Retethering rate for conus lipoma is very high, depend on many factors, such as dura material, whether the neurosurgeon could remove the whole lipoma, and whether the neurosurgeon could clean up all blood before closure and whether the neurosurgeon could create a large space of dura sac to prevent adhesion etc...

                Hope this help.

                Comment


                  #9
                  I don't understand your urodynamics. neurogenic acontractile bladder is underactive- no contraction by the detrusor( the bladder). Can't have neurogenic acontractile with detrusor overactivity ( meaning contraction too early.) Basically your bladder is not having a contraction and you need to cath and your capacity is good.
                  Maybe meant sphincter overactivity but not really common.
                  CWO
                  The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                  Comment


                    #10
                    I think the most important thing at the moment is to be patient. I understand that you are an energitic person before the surgery and it is very sad for us to face the situation of losing function because of the disease. But you did what you need and the nerve needs time to heal. Since your conus is low lying at S2 so it is already at the base at your spine. All the S roots come out of your spinal cord nearly horizontally. (normal person has S roots came of the spinal cord downward very loosely without any tension). That means, even your cord had been untethered very well. The injuried nerve roots are still quite tight now,under tension when you bend your body. If you keep bending your injuried nerve in exercise while they are still in healing, it will surely affect the quality of the functions to be returned.

                    I saw your report said that S2-S5 were damaged but still there. So after untethering, there is still chance to recover the functions but I think it will take longer time for you. For my daughter, most of the nerve roots had been cut by the neurosurgeon accidentally therefore there is no chance to regain functions along time.

                    I recommend you read a journal "Total and Near total removal of Spinal Lipoma -- Part I and Part II, Dr. Dachling Pang, you will understand quite well about your situation after reading it. The dura membrane Dr. Pang used called DuraGuard. A membrance from the heart-membrane of cattle which is a permanent membrane will not dissolve by it own.

                    Btw, MRI could not tell u every details of the lipoma until the surgeon goes in. Therefore, if there is difference of description before and after the surgery, of course the later the accurate.

                    Comment


                      #11
                      I agree that this seems inconsistent and I was confused about this as well. Great point, and thank you.

                      The urodynamics report says: Cystometry revealead his bladder has normal cystometric capacity of 300 mls but deceased compliance with a gradual rise to 20 cmH2O pressure... Detrusor overactivity: Yes, with phasic contractions of 21 to 48 cmH20. The urologist, a voiding dysfunction specialist, said that the pressure was mostly at 20 or below, and only rising to 40 for short periods of time, so not in the danger zone.
                      The clinical notes then say: Assessment: 32/M with tethered cord syndrome, acontractile bladder with a component of bladder neck dysfunction.

                      I think the acontractile bladder finding relates to the fact that I was unable to void sufficiently—the voiding was mostly during straining, flow was poor, and I had a 500 ml PVR (360 mls after going to the restroom afterwards). Perhaps this could be due to the large, trabeculated bladder, bladder neck dysfunction, and/or not sufficiently relaxing the sphincter. I’d appreciate any further insight you might have here.

                      Originally posted by SCI-Nurse View Post
                      I don't understand your urodynamics. neurogenic acontractile bladder is underactive- no contraction by the detrusor( the bladder). Can't have neurogenic acontractile with detrusor overactivity ( meaning contraction too early.) Basically your bladder is not having a contraction and you need to cath and your capacity is good.
                      Maybe meant sphincter overactivity but not really common.
                      CWO

                      Comment


                        #12
                        Thanks for the suggestions. The exercise I?ve been doing doesn?t really involve bending?mostly elliptical, walking, and free weights (no bending), but I may want to take it easy for a couple months, even though my surgeon basically said ?activity as tolerated.?

                        Yes-S2-5 are still there, but they were not responding, so damage is inferred from this. It?s possible I could get some recovery, but I think it?s difficult for these nerve roots to regenerate. I?m sorry to hear about your daughter. Was the surgery done recently and at a major hospital?

                        I?ve seen Dr. Pang?s articles and will review them again. Have you found anything suggesting DuraGuard is a better material than Surgicel?

                        Originally posted by jack Yim View Post
                        I think the most important thing at the moment is to be patient. I understand that you are an energitic person before the surgery and it is very sad for us to face the situation of losing function because of the disease. But you did what you need and the nerve needs time to heal. Since your conus is low lying at S2 so it is already at the base at your spine. All the S roots come out of your spinal cord nearly horizontally. (normal person has S roots came of the spinal cord downward very loosely without any tension). That means, even your cord had been untethered very well. The injuried nerve roots are still quite tight now,under tension when you bend your body. If you keep bending your injuried nerve in exercise while they are still in healing, it will surely affect the quality of the functions to be returned.

                        I saw your report said that S2-S5 were damaged but still there. So after untethering, there is still chance to recover the functions but I think it will take longer time for you. For my daughter, most of the nerve roots had been cut by the neurosurgeon accidentally therefore there is no chance to regain functions along time.

                        I recommend you read a journal "Total and Near total removal of Spinal Lipoma -- Part I and Part II, Dr. Dachling Pang, you will understand quite well about your situation after reading it. The dura membrane Dr. Pang used called DuraGuard. A membrance from the heart-membrane of cattle which is a permanent membrane will not dissolve by it own.

                        Btw, MRI could not tell u every details of the lipoma until the surgeon goes in. Therefore, if there is difference of description before and after the surgery, of course the later the accurate.

                        Comment


                          #13
                          I have no idea of the Dura Material Surgicel. You could search from the internet for more information to see its clinical performance. Before applying this material clinically, the manufacturer will conduct research to test the quality of the membrane and you can see are there any data to support this membrane could effectively reduce retethering rate.

                          In short, in Dr. Pang essay he stated that there are certain factor to judge whether an artificial membrane is good or not. 1) shoud be rigid and elastic enough to support an expansile duraplasty, thats make it strong enough to form a membrane enclosing a large dura sac. With a lot of fluid enclosing inside, as well as hanging the membrane far away from the conus, will effectively reduce the retethering rate. 2) the membrane should be permanent, non dissolvable material, will not disappear by it own. The final best outcome would be a space ratio of the conus/Total space of the dura sac. You would be very safe if the final outcome (from post-op MRI) that the ratio is smaller than 0.3. Thats mean the conus is not occupying the total space more than 30%.

                          No matter how much functions could be returned, you should face it, adapt to it and overcome them. Um... Compare with lots of other S.B patient, you, as well as my daughter's situation are not bad at all. We could still do lots of things we want. So hope you could, at the moment waiting to see are there any functions could be returned, try hard to adapt to this difficulties.

                          Comment


                            #14
                            I don't have the same condition as you. My SCI aas a result of trauma to the L1 and L5. One aspect of your post caused me to respond and that was your IBS/bowel troubles. I was lucky to recover bowel fjnction after my accident but a year later had an awful stretch with constipation, then the runs, then both. I worked with a GI doc for many months and she ended up putting me on IBS meds, first one and then switched to another. It has made a world of difference. That, along with a healthy diet has me about 90% normal.

                            If you think about it, conditions like ours that are nerve centered, seem like prime candidates for other nerve-related conditions. If your Drs send you jn the direction of IBS, give treatments a try. The first remedy may not be the one that ultimately works. It's experimentation, like so many other things.

                            You are approaching this in an educated fashion, which is the best thing you can do. Study up, connect with others having your condition, be your own advocate, your own science project. Keep notes so you can refer back to what works and what doesn't. The variables that can make your life better or worse are legion. With time, you'll get answers and find what works for you. Don't give up. I wish the best for you.

                            Comment


                              #15
                              I looked online for Surgicel and it looks pretty good, though I don’t think it’s a “dura material” necessarily—it has other surgical applications and is noted as a “hemostatic agent (blood-clot-inducing material).” From the operative report, it sounds like the dura was closed and a piece of Surgicel was placed over the closure: the dura was closed in a watertight fashion using a 6-0 Prolene suture... a piece of Surgicel was placed over the dural closure and a small amount of blood was allowed to settle in this location to create a blood path to decrease the risk of postoperative leak.

                              That’s interesting regarding Dr. Pang’s articles. I’ve read the abstracts online. Do you have a copy of the full articles you could share?

                              The operative report does not reference the space ratio you mentioned—perhaps because the conus lipoma was not removed (not sure why, though apparently the surgeon didn’t think it was causing tethering). Did you read about this ratio in Dr. Pang’s articles as well? Thanks.

                              Originally posted by jack Yim View Post
                              I have no idea of the Dura Material Surgicel. You could search from the internet for more information to see its clinical performance. Before applying this material clinically, the manufacturer will conduct research to test the quality of the membrane and you can see are there any data to support this membrane could effectively reduce retethering rate.

                              In short, in Dr. Pang essay he stated that there are certain factor to judge whether an artificial membrane is good or not. 1) shoud be rigid and elastic enough to support an expansile duraplasty, thats make it strong enough to form a membrane enclosing a large dura sac. With a lot of fluid enclosing inside, as well as hanging the membrane far away from the conus, will effectively reduce the retethering rate. 2) the membrane should be permanent, non dissolvable material, will not disappear by it own. The final best outcome would be a space ratio of the conus/Total space of the dura sac. You would be very safe if the final outcome (from post-op MRI) that the ratio is smaller than 0.3. Thats mean the conus is not occupying the total space more than 30%.

                              No matter how much functions could be returned, you should face it, adapt to it and overcome them. Um... Compare with lots of other S.B patient, you, as well as my daughter's situation are not bad at all. We could still do lots of things we want. So hope you could, at the moment waiting to see are there any functions could be returned, try hard to adapt to this difficulties.

                              Comment

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