to de-tether or not

[Hollyjm]

Hello everyone, I'm new at this. I have some concerns surrounding Tethered spinal cord.  I was born with Spina Bifida (meningocele) which I had repaired at the age of 9 months old.
Now at the age of 44, being diagnosed with tethered cord 10 years ago I find my medical situation is slowly declining.  Lots of back pain and  sciatica. My left foot has curly toes, along with my foot getting tighter, colder, and crampy, yet I have broken a toe and cut my foot accidently and not felt it. Also my left leg is slightly shorter and my leg does not straigten completely. My legs are getting weaker. I may be having bladder issues which I will be seeing a Urologist about in June. Just had another MRI done a week ago.  So I am very worried that bladder issues have started and if they have I don't want them to get any worse, also the nerve damage and leg weaknes,  I'm wondering if I should be considering surgery to de-tether my cord before things really get worse. And if I should, I need to find a Neurosurgeon who specializes in Tethered Spinal Cord in Canada.  Please help, feeling very alone and worried.  thanks

[TConrad]

At 23, I was diagnosed with TSC, had surgery at Toronto General Fantastic results, even though damage was done early, pain gone and life went on.
Now 48 cord has retethered and pain is unbarable, waiting to see specialists and surgeons, living in Nova Scotia, I will push for surgery because of last results BUT have not found any info for Adults with retethering because it is rare for this to occur. I highly recomend the surgery make sure you follow up with MRI every 2 years that is how we found mine retethering.
push for it, it is wonderful to be pain free and good luck, I am also looking for names in Canada, I hear McNeeley is the guy in Nova Scotia at the IWK Hospital, my surgeon in TO is no longer doing TSC

[mdavid924]

Hi, Holly. My sister has spina bifida with tethered cord and a whole bunch more can't remember all 13 of them. However, she has had two surgeries, the last one in 2003, where they released the tethering, and it left her with bladder and bowel problems. Though, after a few months, everything improved. But like Selma has mentioned, the cord retethers usually due to scar tissue. Now, after 7 years, she is having pain and numbness in her left leg, dizziness and severe back pain. She has so far opted not to have surgery because of all the post op complications she had. At present, she is seeing a pain specialist. But things are not looking very good yet...I suggest you discuss things with your doctor thoroughly before you decide. And whereabouts are you in Canada? east or West?

[mummyincharge]

Hi Hollyjm,
My 8 yr old was born with a tethered cord.  We delayed her surgery until she was about 3 yrs old.  We waited too long.  It affected her bladder as she has chronic uti's and no pain with them.  She also has braces she wears on her lower legs for support as she still stumbles at times.  She had been suffering from back pain, leg pain and migraines for so long and there were many things she couldn't do, including touching her toes.  It was like a miracle after her surgery when there were not only no headaches, back pain, leg pain and such, but she could touch her toes!!!  I remember her giggling and laughing when she realized she could reach down and touch them.  She is now 8 yrs old and doing fantastic.  
I highly recommend getting the surgery so you can get on with life.  Good luck!

[Hollyjm]

Hi Selma,
  First of all, thanks so much for your quick response.  I read about your surgery for your Chiari. I hope things are looking up for you.  
From what I understand the recent MRI I had on my thorasic and cervical spine will only show if I have any syrinx or syringomyelia. I guess I would have to have an MRI of my brain to show Chiari.  I know you are right about if I don't do anything about  my tc  things will just continue to deteriorate.  Seems to me, one thing can lead into another - it can make one feel overwhelmed. It really helps to talk though, so once again, thank you Selma and take care

[selmaS]

Hi...I also have TC and am waitng on the surgery as I just had decompression surgery for chiari.

Leaving the TC alone will only continue to affect ur health as u mention bladder issues, but it can affect ur bowel as well, legs.....and the constant pulling bcuz of the tether can also  pull on ur brain stem and cause chiari to herniate if u do not have it already....and the compression that is caused by the pulling down can also cause perm nerve damage.

Find a specialist in this field.....I am not aware of drs in Canada, but we do have a forum here on MedHelp for Chiari where others with TC r and it is a great source of support.

http://www.medhelp.org/forums/Chiari-Malformation/show/257

"selma"