Questions about tethered cord

[dede1971]

Can anyone give me any info about tethered cord syndrome?  I've read all I can find on the internet but I'm still not finding the answers that I'm looking for.  I have a sharp pain at the base of my spine.  It is relieved whenever I have a bowel movement or if I expel gas.  I also can relieve my headaches by urinating.  Just looking for info.  
Thanks,  DeAnna

[selmaS]

  OIC...well I have no idea why not, but u should ask about this ...especially since u said u r getting a titanium plate???....yes?

If u do have EDS this could be a rejection issue...as it is a foreign material.

  "selma"

[jenniferk86]

lol.. I mean they didnt make me try to flex my thumb backwards or touch the floor or anything like that ...

[selmaS]

  No stretches?...what do u mean?

[jenniferk86]

I do have a sacral dimple, dont we all? I have hyper relexes... and nystagmus.. and balance issues, but normal neurological exam otherwise, but no questions regarding any thing like I have seen regarding ehlers danlos.. and no stretches or anything like that

[selmaS]

  I was the same way...it helps to take someone else along and give them the list and have them check off what was covered and ask what was not...my DH was in charge of my list.

Do u have the sacral dimple?.....do u know if ur brain stem is elongated, and if ur tail bone(conus) ends longer than typical....those would be what he would look for for TC...along with the bladder issues...like I said they can also be chiari not TC.

I am sure u had a neurological exam when u went to see the NS, most have them see u just b4 u see the NS...and they do a full work up including testing for  EDS....a lot goes by questions they ask u....they may not give u the screening form, but the questions may have been the same.

[jenniferk86]

He does, because I have read many articles about him, he is one of the leading researchers doing... I just find it strange he asked no further questions...

I did not do a questionnaire regarding tc.. he just looked at the mri.. but I always forget to mention it.. but I have low back pain and the pain in my legs and a lot of the symptoms of tc... and eds.. I have joint pain like crazy and I am very hyper flexible.. I don't know if my skin is elastic but I bruise easy and I did that test you posted and I got a 8......

but they never asked me any questions.. but I never asked them either... my problem is.. I am always concerned about the pain and chiari... and forget... i forget alot... and i try to write everything down.. and I did last time... but i still forget....

[selmaS]

  I am not sure if Dr Oro does the TC release surgeries...most of the Chiari NS's do...but not all ...and it all depends on if they feel from what they can see on MRI if they need to look or if ur symptoms fit with the visual that have in the MRI....some will have urinary incontinence with chiari...some it is TC causing it.

Did u fill out a TC screening form to see what symptoms besides that u had?That is not the only indication for TC.....

Did u see a NL at Dr O's office? They r the ones that do the testing for EDS...not the NS....But u should know b4 hand it can be very helpful....so, u may have had teh testing for it and not known it.

What symptoms do u have u feel r EDS?...TC?

    "selma"

[jenniferk86]

I have to wonder about this too... should I ask Dr. Oro about this? I am a little concerned that he did not do any testing for Ehlers danlos or Tethered cord and I feel I have symptoms of both... With he find tethered cord if I have it while doing decompression surgery? I told Dr. Oro that I had Urinary Incontinence, and he pretty much just said oh.. thats interesting... so thats weird.. right? do I go to someone else?

[selmaS]

  Many of the pains can be attributed to chiari, TC or ehlers-danlos, and syringomyelia...there r so many related conditions that can cause pain all over the body.

Have u looked into Medicare or the PCIP.GOV web site they can help u get insurance...it does cost money...so, that may be diff with the no income status.....I am in the same boat but my DH pays for my medical ins I got thru the PICP.Gov.

If u can  not afford ne ins...do look into Medicare.

   "selma"

[dede1971]

`No I have not.  I'm unemployed and have no insurance.  I'm also experiencing a stabbing under my right shoulder blade.  It's unbearable at times.  Could that have anything to do with chiari?

[selmaS]

  Hi...What info r u looking for?...Many times TC can be missed on a MRI...and will be dx'd with other tests...a urodynamics test (bladder function), they  also look at the length of  ur brain stem, where ur tail bone ends all can indicate TC.They will also look for a cyst, a sacral dimple or a hairy patch on the lower back.

When TC is found using tests when it is not seen on an MRI it  is called occulta TC occulta meaning hidden.

  The pain u have at the base of ur spine can be typical of those with TC..... as is the Ha's being relieved when u empty ur bladder....there r sooooo many diff sensations u may experience as a result.....

Have u been thru the TC screening?

   "selma"