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  • Adult onset Teathered Cord Symdrom

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    Old 02-02-2003, 07:22 AM   #1
    dennfore
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    Question Adult onset Teathered Cord Symdrom

    Does anyone have any info regarding this? I have recently been diagnosed with this "condition", coincedently (or not?) immediately after a low back injury/trauma. ANY information or links will be greatly appreciated.....Thanks.

     
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    Old 02-02-2003, 01:34 PM   #2
    plymouth
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    Arrow

    Look into st. john method neuromuscular therapy. They have some success with this when postural distortions are involved, which can result from trauma.

     
    Old 02-02-2003, 07:31 PM   #3
    franjo
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    Hi Dennfore and welcome!

    I have a tethered cord due to spina-bifida and the resulting scarring caused by the many spinal surgeries I've had. A tethered cord is usually caused by scar tissue that restricts the normal movement of the cord in the spinal column. It does not always require surgery, unless you start to experience loss of motor function or changes in bowel and bladder function. Mine will require surgery, this will be my second un-tethering. The surgery itself will often cause additional scarring and tethered cords do re-tether.
    I'm guessing that the trauma to your back may have generated some scarring around the cord.

    I would be happy to answer any questions you may have about TCS and my experiences with this condition. I have also learned quite alot by simply doing a search for "tethered cord syndrome". Any way I can help, please let me know.....franjo
    __________________
    Spina-bifida occulta; Congenital Scoliosis (dextrorotatory and 'S' curve, 42 thorasic and 57 degrees lumbar); Meningomyelocele (split cord @ L1); Diastematomyelia (re-sectioned at L2-3); tethered cord @ S-3; cysts on cord; various developmental abnormalities of the spine: narrowing of all disk spaces, defects in posterior arches, ectasia of the spinal canal and dura, segmental disease, sclerosis in L. iliac bone and adjacent sacroiliac joint, unilateral osteitis condensans ilium, hypertrophic facet disease L4-5 and L5-S1.

    Surgeries include, but not limited to:
    Lumbar fusion-1968
    Fusion with Herrington Rod instrumentation-1970
    Femoral osteotomy-1971
    Tethered cord release-1987
    Rod removal-1987
    Chiari-type pelvic osteotomy-1988
    Trochanteric osteotomy-1989
    Tethered cord release-2003
    Fusion with instrumentation with lots and lots of screws-2003

     
    Old 05-10-2003, 03:58 PM   #4
    vaangel
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    Dear Franjo,

    My 29 year old daughter has just been told that she has tethered spinal cord. I would like to learn more about this. This is going to a surgeon in June. Any information would be greatly appreciated.



    ------------------

     
    Old 05-10-2003, 04:29 PM   #5
    winged phantom
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    Dear vaangel,
    The boards seem pretty quiet today, so I just wanted to welcome you to the board. Teri (franjo) will also be having surgery again in early June! If you want to know more about her story, you can search for her posts here using the search link. Teri is a terrific source of strength and inspiration for this board, and I know when she sees this note, she will be glad to help you with your questions. Good luck to you and your daughter.

    ------------------
    • 12/29/89 C5-6 Microdiskectomy (no fusion)
    • 4/9/03 ACDF C4-7 with plating and donor bone
    __________________
    • 12/29/89 C5-6 Microdiskectomy (no fusion)
    • 4/9/03 ACDF C4-7 with plating and donor bone

     
    Old 05-11-2003, 11:46 PM   #6
    franjo
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    Hi Vaangel and Welcome to these boards!

    I'm glad you found this old post. I'm always happy to talk with anyone who shares this condition. We can all learn from each other.

    I'm sorry that your daughter's condition will require surgery. Has she sought a second opinion? One thing I can't stress enough is to find THE best NS in your area to take her case. There's a lot of NS who are only too happy to go in there, but not all are expert in this area.

    I would be very happy to answer any questions you might have, if I can.

    Happy Mother's Day to you!

    ~Teri
    __________________
    Spina-bifida occulta; Congenital Scoliosis (dextrorotatory and 'S' curve, 42 thorasic and 57 degrees lumbar); Meningomyelocele (split cord @ L1); Diastematomyelia (re-sectioned at L2-3); tethered cord @ S-3; cysts on cord; various developmental abnormalities of the spine: narrowing of all disk spaces, defects in posterior arches, ectasia of the spinal canal and dura, segmental disease, sclerosis in L. iliac bone and adjacent sacroiliac joint, unilateral osteitis condensans ilium, hypertrophic facet disease L4-5 and L5-S1.

    Surgeries include, but not limited to:
    Lumbar fusion-1968
    Fusion with Herrington Rod instrumentation-1970
    Femoral osteotomy-1971
    Tethered cord release-1987
    Rod removal-1987
    Chiari-type pelvic osteotomy-1988
    Trochanteric osteotomy-1989
    Tethered cord release-2003
    Fusion with instrumentation with lots and lots of screws-2003

     
    Old 05-11-2003, 11:55 PM   #7
    franjo
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    Location: Indiana
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    Hey Wing,

    Thank you for your wonderful words! I hope you had a wonderful Mother's Day. My 3 yr. old told me that he thinks that I should get a present everyday. I plan on reminding him of that 30 years from now when he's CEO of some major company!

    ~Teri
    __________________
    Spina-bifida occulta; Congenital Scoliosis (dextrorotatory and 'S' curve, 42 thorasic and 57 degrees lumbar); Meningomyelocele (split cord @ L1); Diastematomyelia (re-sectioned at L2-3); tethered cord @ S-3; cysts on cord; various developmental abnormalities of the spine: narrowing of all disk spaces, defects in posterior arches, ectasia of the spinal canal and dura, segmental disease, sclerosis in L. iliac bone and adjacent sacroiliac joint, unilateral osteitis condensans ilium, hypertrophic facet disease L4-5 and L5-S1.

    Surgeries include, but not limited to:
    Lumbar fusion-1968
    Fusion with Herrington Rod instrumentation-1970
    Femoral osteotomy-1971
    Tethered cord release-1987
    Rod removal-1987
    Chiari-type pelvic osteotomy-1988
    Trochanteric osteotomy-1989
    Tethered cord release-2003
    Fusion with instrumentation with lots and lots of screws-2003

     
    Old 05-12-2003, 12:39 PM   #8
    joprud
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    Hi Dennfore and Vaangel,

    Welcome to our little family...which seems to be growing and growing...I'm so glad you found us...and as wing said Teri is awesome...hope to hear from you guys soon.

    Take Care
    Joanne


     
    Old 05-12-2003, 08:03 PM   #9
    winged phantom
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    Teri, your son sounds very sweet! That's a very cute age. My son, at nearly 24, said I was the best mom in the world; I'm still feeling teary and lucky to have him!

    Oh, and everybody here knows just how special and courageous you are; don't ever forget that, Teri! You're one terrific Hoosier!
    wr
    __________________
    • 12/29/89 C5-6 Microdiskectomy (no fusion)
    • 4/9/03 ACDF C4-7 with plating and donor bone

     
    Old 04-08-2005, 04:50 PM   #10
    dreamergirl1
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    Question Re: Adult onset Teathered Cord Symdrom

    I've just been diagnosed with TCS and a Tarlov cyst (about the size of an egg) It answers alot of questions I've had about physical problems in prior years. I'm over 40 and have had backaches and UTI's most of my life. Pain has increased to the point of only being able to sleep several hours at a time, not being able to sit, stand or walk for more than 15 mins. Constant numbness in legs and feet. Work has definately been a challege. I have had migraines starting about age 9 and I've also been recently diagnosed with Type 1 diabetes, which does not run in my family. I'm 5'1" and weight about 90lbs. I wonder if this is all connected some how?
    I am scheduled for surgery in a couple of weeks and am fearful of the future. Can anyone give me what kind of recovery time the surgery involves or recommendations on going thru this, and if they have had any combinations of these issues?

     
    Old 06-02-2005, 06:05 AM   #11
    wnywill
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    Re: Adult onset Teathered Cord Symdrom

    My 3 month old daughter was recently diagnosed with Tethered Cord Syndrom. I had never heard of this until now. We have met with one Neurosurgeon that specializes in this procedure at a Childrens Hospital and will meet with one more for a second opinion next week. Her bladder functions seem alright so far. The Doctor seems to think it is 100% corrective and will save her from potential problems as she gets older. I have not been told that this can re-occur. Is this something that I may have to constantly have checked? Does anyone else oput there have a child that has gone through this procedure (Untethering). Obviously we are very nervous about having our 3 omonth old operated on in such a delicate region. Any information out there would be greatly appreciated.
    Will

     
    Old 07-04-2005, 02:13 PM   #12
    teresa4671
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    Re: Adult onset Teathered Cord Symdrom

    Hello. I had surgery almost 5 years ago to release my tethered spinal cord. It will be 5 years next month. I have a question. I have noticed a lump in the lower part of my back just above my scar from the surgery. I have never noticed it before, but you can see it, as well as feel it. When I over exert myself, I have low back pain and a sharp electric pain that runs down my left leg like it did before surgery. I continue to have bowel problems and feel that it may be worsening. Of course, I usually ignore most everything (symptoms that is). I had pain in my legs and horrible pain that would come and go in my tailbone area all of my life before I was diagnosed and had surgery at 29 years old. They only discovered the tethered cord because I had had a car wreck. Has anyone else had surgery and had this kind of thing occur (the lump in the lower back)? Thank-you for your time, Teresa

    Last edited by teresa4671; 07-04-2005 at 02:22 PM.

     
    Old 11-07-2005, 06:53 PM   #13
    ladybugg30
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    Re: Adult onset Teathered Cord Symdrom

    I have been diagnosed with a tethered spinal cord and arachnoiditis. Nobody can seem to give me any information about my conditions, even the docs are a little fuzzy. Please help! I've had 4 back surgeries in 5 years and still in extreme pain. Does anyone know where I can find information on the treatment of my conditions? All I need is someone to point me in the right direction. Anyone, anywhere, it does not matter. Thanks.

     
    Old 11-07-2005, 07:01 PM   #14
    ladybugg30
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    Re: Adult onset Teathered Cord Symdrom

    Quote:
    Originally Posted by teresa4671
    Hello. I had surgery almost 5 years ago to release my tethered spinal cord. It will be 5 years next month. I have a question. I have noticed a lump in the lower part of my back just above my scar from the surgery. I have never noticed it before, but you can see it, as well as feel it. When I over exert myself, I have low back pain and a sharp electric pain that runs down my left leg like it did before surgery. I continue to have bowel problems and feel that it may be worsening. Of course, I usually ignore most everything (symptoms that is). I had pain in my legs and horrible pain that would come and go in my tailbone area all of my life before I was diagnosed and had surgery at 29 years old. They only discovered the tethered cord because I had had a car wreck. Has anyone else had surgery and had this kind of thing occur (the lump in the lower back)? Thank-you for your time, Teresa
    Teresa,
    I have the same symptoms you do. My first surgery was five years ago as well. I certainly sympothize with you. I have a lump as well. All I have been told is that the lump is scar tissue. The pain in my lower back and legs is constant with no relief from pain medication. My neurosurgeon has told me not to have any more surgeries, but I feel compelled to do anything to make the pain go away. Just know you are not alone. Hope all is well...Angie

     
    Old 11-10-2005, 02:23 PM   #15
    HERZY
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    Re: Adult onset Teathered Cord Symdrom

    Anyone Out There Who Has A Tethered Spine , Heavy Legs, Tight Arms, Tingling And Has Episodes That Mimic Ms ?strange Case, Nr Says It's MYELITIS In The Neck, My Daughter Just Found Out She Was Born With A TETHERED SPINE Last 4 Vertabrae, What A Mystery, Many Mri's, No Lesions, Yet She Has Pain And Takes Neurotin......any One With Same Problems Please Answer, Doc's Don't Know Everything ! Help Solve The Puzzle.

    Last edited by HERZY; 11-10-2005 at 02:29 PM.

     
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