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Thread: Scoliosis & teathered spinal cord

  1. #1
    Join Date
    Aug 2006
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    16

    Scoliosis & teathered spinal cord

    HI

    I have scoliosis and octave spinabifida excuse the spelling.

    I have recently had a MRI and have been told I have a teathered spinal cord. I now have to see a nuro surgon.

    Has anyone encountered this and have they needed to get anything done to correct this ?

    Cheers for any replys

    Dave

  2. #2
    Join Date
    Nov 2004
    Location
    U.K.
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    Hi dave

    I too have a tethered cord. It can cause some nuerological problems, but (as in my case) detethering is often not done because retethering can occur and you may end up with more problems.

    There are some quite good websites - you can find quite a good description here:

    http://www.neurosurgerytoday.org/wha...e/tethered.asp

    and on the link pages of my blog there are quite a few more links in the spinal information section.

    http://wwwlinkpages.blogspot.com/

    As to the Spina Bifida, you probably have spina bifida occulta (the hidden form) - many people have this with no syptoms and no need for surgery. Your neurosurgeon will help given you information, but in the meantime I hope these links help.
    Double 63(T)/75(L) deg curve with big sideways shift - Surgery in UK on 8th February 2006.
    Post op 30(T)/33(L)
    http://warpedwoman.blogspot.com/

  3. #3
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    Aug 2006
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    Many thanks for those links ver informative

    In the last year or two most in the last year I have had troubles with my lower back and pain which goes down my leg and also servere pain which makes it very uncomfortable to stand and i also get very tired quick. Ialso have problems of sitting wich can be very painful.

    I do hope my nuro surgon can offer something even if its better medication etc.

    many thanks

    Dave

  4. #4
    Join Date
    Oct 2003
    Location
    Utah
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    A neurosurgeon is the best doc to see for this problem. My son is now 11.5yrs old. He has congenital scoliosis and had a tethered cord (caused by a fatty filum). Braydon has had two tethered cord release surgeries. We (the neurosurgeon and us parents) chose surgery to release the tethered cord because the symptoms were progressively getting worse. The risks of surgery and potential benefits from surgery outweighed our concerns that surgery would cause more damage (which can happen). Fortunately for Braydon, surgery has been the right choice. Hopefully in the future he won't need more releases done. His spinal cord seems to be very sensitive to any amount of tethering. There is a message list for adults with SBO. I can get that link if you are interested. Good luck to you.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  5. #5
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    Aug 2006
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    Carmell that would be great if you could.

    Iam 27 now getting on in age and things seem to be getting worse as in pain, with this new find of teathering iam a little concerned as i dont perticually want surgery but then again i dont want the pain. I suppose I will find out more once i get to see the nuro docs

    Dave

  6. #6
    Join Date
    Feb 2007
    Posts
    4

    Logans Story

    Hello,
    My son Logan (6/10/06 DOB) was diagnosed with what we thought was Scoliosis but ended up being the result of a tethered cord. We just found out this info yesterday and we are going to see a Neuro dr next week. I am looking for resources to locate Dr that specialize in this field. We are willing to travel anywhere in the US to get the best services.

    Thanks,
    Heather

  7. #7
    Join Date
    Aug 2005
    Location
    S. Jersey
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    Hi Dave. Like Carmell's son, my son Billy has congenital scoliosis and has had two tethered cord releases, one at 4 months old and the other at 6 when we did his spinal fusion. It was retethered, and that is always a risk, but you have to weigh risks and benefits. If you are worsening, and there is lots of pain, then the benefits probably outweigh the risks. Usually the detethering helps with pain, not so easy to say if it will help with bowel or bladder issues (if you have them and didn't care to mention, but they are a very common symptom of a tethered cord) but they often stabilize the deterioration if not improve the problems. Leg weakness usually improves, although any orthopedic changes (foot arches getting higher, legs twisting, etc.) don't go away.

    With his retether, Billy had leg weakness, off and on back tingling, and uro worsening along with twisting of his left tibia outward. His symptoms were NOT bad enough to do the second detether on there own, however since he was having his spine straightened and fused, they decided it was too dangerous not to do it then, it could have paralyzed him if they straightened him or they would have had to be limited in the amount of correction they could have gotten with the surgery. This way his cord was safe and his spine was straightened, and hopefully that will pull the end of the cord up high enough to keep it away from the repair site and the scar tissue that was forming. Fingers crossed! He's now charging around with much more energy, no tingling, and uro situation has improved

    Good luck with your doc visits and your decisions!
    Connie - Mom to Billy 5
    (CRS/VACTERLS incl. tethered cord, IA, single kidney, hemisacrum, levoscoliosis with hemivertebrae (fusion T11 to S2/hips 8/06), extra left rib, hypospadius, hypoplastic left leg w/clubfoot and 4.5cm length discrepancy,GI issues) conni60640@aol.com, http://members.tripod.com/conni60640-ivil/
    TC support group http://health.groups.yahoo.com/group/LMC-TCS/
    Congenital scoliosis support group - http://health.groups.yahoo.com/group...liosisSupport/

  8. #8
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    Aug 2006
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    many thanks for the replies will be at the hospital this friday to see what the doctor has to say.

    At the moment there is no bladder or bowel problems just the pain and the numbness around the side and leg and weakness when standing.

    I tend to find my neck hurts alot and makes me rather tired alot , unsure if this is part of the problem or is connected.

  9. #9
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    Aug 2006
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    Well went to the hospital on friday and looks as though i will need surgery, they have requested a full scan from brain all way down spinal cord to make sure there is no other problems along the line.

    I know This will not solve the back pain but hopefully will help with the nerve pain and stop any further progression of the symptoms.

  10. #10
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    Aug 2006
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    16
    Hi again.

    Was hoping someone could answer this.

    What would i expect after surgery ? Pain wise and would i be able to walk within day without problems etc ?

    Anyone who has had this done or knows someone ... any info would help.

    Cheers

    Dave

  11. #11
    Join Date
    Oct 2003
    Location
    Utah
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    Hi Dave,

    I have not personally had this surgery (tethered cord release) but my son has. He was 4 yrs old and 11 yrs old when he had it done. Still a child, not an adult, but I'll be happy to share his experiences with you.

    Immediately after surgery you will likely have to remain flat for a period of time (usually 24-48 hours). This is to allow the dura (the lining of the spinal cord) to heal. You will likely be able to lay on your back or either side, but not elevating your head. Being on your tummy is not an option as it puts too much pressure on the dura also. If you are upright too soon, the pressure in the spinal cord can cause a spinal fluid leak - this is BAD. Leaks can cause crushing cerebral headaches because the spinal fluid pressure is not normal. If they tell you to lay flat for 48 hours, do it. I promise you will be much better off. (I know this because my 4yr old tried to be too active too soon, and paid dearly with very bad headaches.)

    Braydon had an epidural catheter placed during the surgery to administer pain meds continuously while he was laying flat. This worked wonderful for him. He was able to rest and not have breakthrough pain that was hard to control. Ask about pain medication. Make sure whoever is going to be your patient advocate knows the pain management plan BEFORE the surgery happens so you will be as comfortable as possible.

    After the 24-48 hours, they will likely have you start standing and getting your land legs back. If your pain has been well-controlled, you will do fine. Braydon was released after 4 days in-patient. He needed pain meds for about 2 weeks post-op, then has been great since. His pre-surgery symptoms have gone away completely. For an adult, I would imagine you will need some type of pain medication for a few weeks post-op. The biggest problem with pain medication is that it slows your GI system. As soon as you are able to start keeping oral liquids down, make sure they give you stool softners, at least. Constipation is not pleasant. The pressure from the stool in the intestines can push on the new incision which is painful (again, Braydon's experience).

    All questions need to be directed to your surgeon. The surgeon (or an assistant) will be able to tell you generally what to expect. Ask questions that are specific to your situation. I wish you well with your surgery. Let us know when it gets scheduled.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  12. #12
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    Aug 2006
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    Many thanks Carmell for the reply.

    Just wating for my new scan and a discussion with the doctor on how we will go about things.

    Iam assuming the Extra scan is to make sure there is no other complications within the spinal cord as i only had a lower lumbar scan due to the fact it was the lower back which was causing the most pain.

    Will update you on progress and Dates of when iam due for the operation.

    regards

    dave

  13. #13
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    Aug 2006
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    Hi all thought i would do an update

    From the doctors report as follows

    I have significant thoraco-lumbar scoliosis with concavity to the left, small swelling in the lumbar sacral region which is not well demarcated.

    Sensory impairment in left c7 dermatome and right l3 and l4 dermatomes.

    Split cord malformation with cord being split from l3/l5. The two hemi cords unite to form a filum below boney spur which has arising from the l5 vertebra which is also deformed. There is a lipoma thethering of left hemi cord.

    I need an excision of the boney spur, release of the filum and release of the hemi cord from the limpoma.

    Before i have this done they sent me for more MRI`s to rule out any other problems further up the spinal cord and they are looking for.

    Ventricular dilation, chari malformation and any syrinx.

    Once the MRi results have been looked at I will go in and review the MRI`s and make further plans for the Operation.

    I Hope that everyone understand because I did not , had to google a few things.

    Anyone had anything similar before ?

  14. #14
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    Oct 2003
    Location
    Utah
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    Hi Dave,

    Thanks for sharing your information with us. Your condition is unique, but there are many out there with similar spinal cord malformations and bone structure malformations. The odd thing is that it has taken many years (into adulthood) to discover the problem. Most people who have problems like this are diagnosed early in life. Probably the only difference in treatment will be that the surgery is typically harder on an adult than on children. If you have a neurosurgeon who has successfully treated patients like this, you will be just fine. Doesn't make it any less scary or frightening. Just know you are not alone.

    There is a Yahoo group for families who have experience with closed spinal cord anomalies. If you haven't already, maybe it will help you to read through some of the information pages on that list. You can find it here: http://health.groups.yahoo.com/group/LMC-TCS/

    My best to you.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  15. #15
    Join Date
    Aug 2006
    Posts
    16
    Cheers Carmell

    Well in a way I am not suprised they have missed this as the health system here is not the greatest. Out of the 27 years of my life time i have had 4 mri`s 2 when young and 2 withing this year ans only one was a full body scan.

    Most of the time I have went to specialist they put the pains etc down to me growing up and I will probably have the pain for the rest of my life and have to live with it.

    It is by chance that i have been ill for over 2 years with servere pains in lower back and legs and it took physio for 3 months and back to specialist for a MRI of my lower back and this is what they discuvered.

    I will have a read though that link and see what is there.

    Many thanks

    Dave

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