Thoracic Tethered Cord

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Thoracic Tethered Cord

Postby Dcuster » Fri Jun 08, 2012 5:31 am

Good Morning everyone, hope you all are having a pain free day. Just wanted to drop in and update, has been a while. Went and had thoracic & lumbar yearly MRI's this week, I now have a thoracic tethered cord. Not sure what I need to do with it. It appears that when I had my syringomyelia (shunt) placed due to all the scar tissue it has decided to tether. Not sure if they will want to mess with it being so close to the shunt site or not.

I noticed several months ago that if I bend down to lets say pick up the cat and stand upright fast, then start to walk my legs get kind of numb feeling like they are not my legs, I can still make them work but a weird feeling like they are not mine. They have this numb/tingle like feeling. actually it feels kind of good not bad at all. The only thing is I half to sit down fast when this happens or just bend forward and touch my knees and it stops. If I don't then it feels like my legs are just going collapse.

As for the rest of my MRI reports, same old thing, ton's of hardware and chronic generalized disc bulge, disc herniation's etc. oh and have some herniation's in the thoracic area as well now which is very rare. I have already had every single region of my spine cut on, I wonder what's left to do anymore.

I am thinking I might just watch the tethered cord and see how that goes, what do you guys think. Should I go to my NS and have them look at it. My neurologist called me himself yesterday telling me it was there and not to do any bending, stooping or squating at all. (sp) sorry in advance to early lol. I really don't know much about tethered cords, but with me having syringomyelia it can't be good. LOL they still say I don't have CM, even though I measure 4mm. My identical twin had her brain MRI and the radiologist said she has low lying tonsil's but yet my NL said no CM lol. I wish they would have to renew there education on a yearly basis in order to practice. Then maybe they would get a clue. Tallahassee, Fla's doctors kind of suck at anything to do with SM,CM etc. anyways just wanted to update and ask all you tethered cord peeps what I should expect now or do, or should I just leave it alone at this point since I already have SM (shunt). Thanks
SM t10-T12 2.5 x 1.1 cm in dia, thorasic shunt 2002,
Pineal Cyst, C5-C6 fusion 2005, Lumbar L2-L6 w/4 level fusion with hardware 2006, adrenal gland tumor, 7-8 thyroid nodules, 2008 C4-C7 Corepectomy with hardware.
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Re: Thoracic Tethered Cord

Postby Dcuster » Mon Jun 11, 2012 5:19 am

I'm guessing not many people on over the week-end. I do have a question for those of you who have tethered cord, should I do anything with it? It is exactly at the site I had the shunt put in. T10-T12, it's mostly from the scar tissue I believe. I am trying to get into the syringomyelia study now. They had sent me a letter 2 different time over the past 6 yrs or so last being 2008. I contacted Dr. Heiss office to see if I can still get in. They asked me to send all of my records and I still have all my stuff from my currant NL who send the recommendation letter to Dr. Heiss so I am crossing my fingers. I just don't trust these Dr's around here anymore.

Would it hurt just to watch the tethered cord at this point since I already have a syrinx? I do have symptoms already which lead me to ask for another MRI and then they found it. When bending over my legs go numb, I can still use them they just feel funny like they are not my legs, I have sever leg (calve) cramps and have battling that for now about 2 years. I do try to walk every day, does that help or hurt? I'm not sure anymore.

Thanks for any input on this if you can.

Donna
SM t10-T12 2.5 x 1.1 cm in dia, thorasic shunt 2002,
Pineal Cyst, C5-C6 fusion 2005, Lumbar L2-L6 w/4 level fusion with hardware 2006, adrenal gland tumor, 7-8 thyroid nodules, 2008 C4-C7 Corepectomy with hardware.
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Re: Thoracic Tethered Cord

Postby drummergrl » Mon Jun 11, 2012 1:04 pm

Donna,

I don't have a tethered cord but didn't want you to check back and think no one's listening! Hopefully someone with some more insight will reply to this.

I've had very similar issues with my leg 4 MRIs, 2 CT scans, and 1 myelogram later have showed nothing besides my syrinx. While I obviously don't have a tethered cord (I would hope it would have shown up by now!) I can definitely relate to the worry about what to do, when to do it, and how far to take diagnostic testing and treatment. I'm hoping you'll find answers soon and can get some peace. It can be so difficult being in this position.
CM, SM, Scoliosis
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Re: Thoracic Tethered Cord

Postby Dcuster » Wed Jun 13, 2012 12:37 pm

Thank you drummergrl. I am almost ready to send all my papers and MRI's to Dr. Heiss. Then I will have to wait it out. Does anyone know about how long it takes to hear back from NIH syringomyelia study? I have put this off way to long.

Also would love to hear from anyone that had tethered cord surgery in the thoracic area, mine is from scar tissue I believe. Could not sleep last night thinking about yet another surgery.
SM t10-T12 2.5 x 1.1 cm in dia, thorasic shunt 2002,
Pineal Cyst, C5-C6 fusion 2005, Lumbar L2-L6 w/4 level fusion with hardware 2006, adrenal gland tumor, 7-8 thyroid nodules, 2008 C4-C7 Corepectomy with hardware.
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Dcuster
 
Posts: 312
Joined: Mon Dec 10, 2007 11:21 am


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