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Spinal cord de-tethering

Neck of Steel CindyNNeck of Steel Cindy Posts: 1,064
edited 06/11/2012 - 8:49 AM in Back Surgery and Neck Surgery
I'm just curious if any of you have had this procedure? My cord was damaged a few years back and I now have a tethered cord. Apparently scar tissue formed on the cord itself where it was damaged, and that tissue has attached to the wall of the dura, thus tethering the spinal cord down.

The surgery being offererd is very invasive, and I'm not too happy with the thoughts of doing it. Apparently they cut through the dura, scrape and peel the tissue off of the cord and then put a graft back over it to ensure that no further scar tissue growth happens in that area. Then it is a week laying flat on your back (not even up for potty). Another couple of weeks in the hospital and then a difficult few months after that once the patient gets home.

Have any of you had this procedure? If so, how did it go for you? Did it stop the progressive symptoms? Did you regain any of the strength or sensation that you had recently lost?

I'd just like real patient stories rather than just what the doctor tells me. I haven't seen this on these boards, so hopefully this will prompt a discussion and bring some out of the woodwork.

Comments anyone?
Surviving chronic pain one day at a time, praying for a reprieve because living another 40 years like this doesn't sound too fun!


  • SpineAZSpineAZ WiscPosts: 1,084
    People with Ehlers Danlos can have a similar procedure as they often have a tethered cord. You may want to see if there are health on line board that are for people with EDS. Although you don't have EDS, the surgery is similar to what some have done.
    2 ACDFs, 2 PCDF, 3 LIFs; Rt TKR; Rt thumb fusion ; Lt thumb arthroplasty; Ehlers Danlos 
  • I wish I had advice. I think the only thing I can offer is that yes, scar tissue can form around the nerve which is just as painful as the herniated disc compressing the nerve.

    You might want to ask if they will do any nerve monitoring during the procedure. They can have a special neuro team hook you up to nerve monitoring device (it's like a cross b/t accupuncture and EKG) and they monitor the nerves while the surgeon works. I can send you PM you a link to the kind they used for my 2nd MicroD but I know there are several kinds. They use it for kids ear surgery and a few other surgeries. It helps with recovery and will alert the surgical team if they are really annoying the nerves.
  • I can only imagine what life would be like with your problem. A majority of the people here have had fusions to take care of pinched nerves or instability. You're situation seems to be unique to the problems that people usually have here. You're decision is a very personal one, and only yuou know if it's worth the healing procedure or the risks involved with the surgery.

    I'm sure it's been mentioned before, but if you haven't done it yet, be sure to get a second opinion.
    Spine surgery is scary enough without wondering if this is the only thing that could be done.

    Good luck, and I hope it gets better for you.
  • Hey Cindy,

    Long time since we spoke. It's Lisa- c4-c6 emergency surgery...

    Anyway, i don't know if i ever told you but from the compression and the cord becoming flat it got tethered. My operative report states, "severe spinal cord compression with tethering and adhesions along the anterior dura. we carefully performed microdisectiom technique resecting the ossified posterior longitudinal ligament and posterior annulus, developing a plain and normal dura etc... released tethered dura at the c4-c6

    So, I guess you can say i had this surgery and I'm still around. PM me if you want. How are you and family doing!!

  • This is what I love about this place. I just came back to look at what I posted and see that I have these responses. Thanks everyone.

    SpineAZ, I will check out this EDS. I have to admit I've never heard of that condition, so it will be interesting to research it a bit.

    DNice, I actually had a long discussion with my surgeon about it, and he said that some doctors just slap a few pads on and call that neuromonitoring. So there are different methods of in-surgery monitoring. He feels like you have to do the type of monitoring you are describing with the needles that go into the muscle for it to be beneficial. This is what we did on my 2nd surgery and thankfully I didn't have any complications, but it was reassuring to know that they were monitoring things closely to prevent problems. I would highly recommend that everyone use this type of monitoring for spine surgery, especially cervical spine surgery.

    Weaveman, thanks for the comments. This is a huge decision regarding this surgery, and I'm not feeling confident at all. My diagnosis came from a world famous surgeon in Colorado. I specifically went to that facility for an evaluation because they are the best when it comes to spinal cord injuries. Now that I have a diagnosis as far as it being a tethered cord, I will definitely be speaking with my regular neurosurgeon and possibly another opinion as well. Your advice is good.

    Lisa--how are you? It has been a long time since we've chatted. From reading your notes, was it your cord that was tethered or the outside of your dura (anterior) that was tethered? Did they have to cut through the dura to access your cord and scrape the scar tissue off of the cord itself? I am told that there are only 2 doctors in the nation who do this procedure and I am very interested to hear back from you. Maybe yours was a different method of untethering the cord? Hmmm... I hope you can give me more information.

    Surviving chronic pain one day at a time, praying for a reprieve because living another 40 years like this doesn't sound too fun!
  • Hi cindy,

    I can't tell from the operative report. It says severe spinal cord compression with cord tethering and adhesions along the anterior dura. I never discussed the procedure in detail with the surgeon but yours sounds different then what i had done. I do know that he did not do the posterior posts because he was worried about anymore manipulation then necessary and he did say he had to release the cord in a nonconventional way due to the significant risk of trauma and paralysis. Now that I'm rereading the report i am getting nauseous and my neck has begun to hurt. Don't see anything about a patch and it doesnt seem like my surgeon opened up the dura.
    Anyway, I hope all goes well for you and you are able to get the surgery you need to free you from the pain. Wish i could tell you more. Could you pm me where they do this surgery? I am very interested in it.
    I sent you a pm- so glad you got to the best surgeon
    Take good care
  • Lisa, The PM you sent me is written by the surgeon I saw. I'll send you the facility location. I know what you mean about becoming nauseated when you read your reports. You've been through a lot. How are you doing?
    Surviving chronic pain one day at a time, praying for a reprieve because living another 40 years like this doesn't sound too fun!
  • Cindy, Its been a long time since I have talked with you. I take it this is the recommendation that came of your being sent to Colorado? Sorry that there wasnt an easier fix placed in front of you. I dont have any insight into this, but I wanted to say hello and let you know I've been wondering how your doing. I hope someone here has some good input for you and please keep us updated.

  • My SIL was born with minor spina bifida and now has pain at 49 and her bladder doesn't work but she's still able to get around without any pain meds hardly. She recently had an MRI that showed the tethered cord but is putting off any surgery unless necessary. Maybe ask Your Surgeon how often he does this surgery and perhaps if you can speak to one of his patients.

    Many surgeries like un-tether is done by surgeons at a children's hospital as many who were born with spina bifida will need this surgery maybe more than once so maybe check out some boards on spina bifida.

    This is a major surgery and just hope all things go well if you're considering surgery. Best wishes. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • Just wanted to say that I appreciate the insight on the nerve monitoring. My surgeon did do the one with the needles for the reason you explain.

    It really sounds like you have a great relationship with your surgeon and he's very detail oriented.

    Best wishes!

  • Mitch, yes this diagnosis came from my evaluation in Colorado. I am so fortunate to have gotten in to that place. My doctors here didn't have a clue why my symptoms were worsening and had basically written me off. It has been a long time since we've been in touch, and it is so nice to know that friends remain friends even without communication. I hope you are doing well.

    Charry, Thanks for the info on spina bifida. I will do some research in that direction. At this point I am leaning towards not doing the surgery, at least for now. 1% doesn't sound like too big of a risk, unless I happen to be the 1%. I've been on that end before, and it isn't fun. So I'm not too excited to jump for surgery at this point.

    Thanks to all of you for the comments. Apparently this doctor has performed over 1,000 of this surgery, so I'm hoping someone else will come forward with experience in this.

    Surviving chronic pain one day at a time, praying for a reprieve because living another 40 years like this doesn't sound too fun!
  • Sorry to hear about your problems with a tethered cord. I was born with one, but didn't know it until I had back problems in my forties. My surgeon did three laminectomies and then opened up the cord and untethered the cords. They also went in a year earlier to take out a tumor inside the cord that was congenital. For me, I said yes to the surgeries when it was beginning to affect my bladder and leg function. I only had to lay flat for about two days to let the spinal fluid build back up. They sewed or did something to close up that dura after the procedure and then glued it as well. It was a scary operation, but was a lot less recovery than the last two eight hour fusions that I've had as a result of the vertebrae being weakened from those previous surgeries. Does it retether. I was told yes, but not always with neurological problems. In my case, it is closely related to spina bifia, and like others have said, look up hospitals that work with children with that and you will find more info. I wish I could connect with others who, like you and me have had this. Feel free to contact me.
  • Hi Cindy, just wanted to let you know you are not alone. I just found out last week I have a tethered cord at the site where I had a syringo-subacnoid (sp) shunt placed at my T10-T12 area for a very large syrinx (syringomyelia) mine was the whole entire width of my cord and bulging on both sides. Since then they, my lumbar collapsed, then I had a disc go bad in my neck? Dr operated on wrong one. With in a year my whole cervical had to be done just about. Now after my yearly MRI that I have had to do for the past 10 yrs they find the tethered cord.

    I am trying to get into a study in NIH for syringomyelia/CM and hope they accept me just to get a real experts opinion. Keeping my fingers crossed.

    My question is for those who know, how long can I go without more damage? I am having tons of problems with my legs the worse being cramps and then burning and tingling. I still walk every day just to keep them moving, but I have to take neurotin, baclofen, soma, clozapam (sp) etc just to do it. None of these Dr's locally have a clue. I am in big trouble if I can't get into the NIH study. Due to income etc. I am disabled so I have a very limited budget.
  • EmilychEEmilych Posts: 1
    edited 03/11/2015 - 9:57 AM
    Hello! I have had this kind of surgery–wait for it–five times. Depending on your age, recovery is fast or slow. For me, recovery gets progressively slower, but that is more likely from my own nerves being screwy with me than the surgery itself. I can tell you this though: time spent on your back is not a full week. Each time I've had it done, they had me on my back for one or two days.
    Some more advice for you is this: start moving as quickly as possible. This will help slow muscle atrophy and speed up your recovery. I had my most recent detethering about a month ago (February 2nd) and found that moving and getting up, even if it hurt, helped a lot and I am recovering at a much better pace. I'm still with a walker (which you probably won't be) but I am moving along way quicker and can do more things both new and more easily.
    Good luck!

    Welcome to Spine-Health

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    If there are any questions, you can always post them here, send Liz or myself a private message or contact Ron rdilauro@veritashealth.com

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    Emily Harrison
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