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Old 06-30-2003, 03:37 PM   #1
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Join Date: Jun 2003
Location: Clearwater, Florida, United States
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bunnykitten HB User
Question Tethered Cord

I'm new to this site. I don't see any tethered cord people here so I hope this doesn't go overlooked. I'm 25 and have had 4 back surgeries. I'm scheduled for my 5th on July 14. I'm in pain all the time, I've lost a lot of function in my legs. I just want to here from anyone who has this disease or anything similar. It's a rare disease so there's not a lot of information out there. Is there any other adults who have this disorder. Please help me!
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Old 06-30-2003, 04:09 PM   #2
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janie francine HB User
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Hi bunnykitten,

Sorry I can't help with your concerns, but I do want to welcome you to the board. I've seen tethered cords discussed, so I'm sure someone will respond. People here are wonderful.

I'm sorry you're in so much pain. I'm sending prayers your way.

Jeanine

 
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Old 06-30-2003, 04:38 PM   #3
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KeithEugeneW HB User
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Bunnykitten,

From the forum menu click on search, and type in tethered for the search word. It will come up with several posts, and I hope some of them help you. My sympathy is with you having to go in for a 5th back surgery, you must be the toughest rabbit/cat I've ever known!

Keith

 
Old 06-30-2003, 07:44 PM   #4
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Posts: 417
RageOfAngels HB User
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Hi,

I have tethered cord, in fact I just had my second such surgery about 2 years ago. It went well, but I have some problems still here and there.

I agree with KeithEugene, do a search on all previous posts from either myself or Franjo, because we both have tethered cord. I couldn't possibly write the same stuff again from scratch, but if you have any specific questions or concerns I will try to answer them tomorrow....

Cheers,
Al

 
Old 06-30-2003, 07:57 PM   #5
ajfinsand
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Bunnykitten,

There is a member named Teri (username Franjo) who is having surgery for a tethered cord on July 15th. She has been having computer problems lately and not been able to get onto the board though. If she does get on, I am sure that she will reply to your post and share any information she has with you.

I know how you feel about not being able to find anyone who is going through a similar ordeal. I've never been able to find anyone with a similar history who has had the same surgery as I have.

aj in Oregon



------------------
~ 48 year old female; currently self-employed as an artist/designer/woodcrafter.
~ Previously worked in the restaurant biz for 27 years (not so good for someone with a bad back!)
~ Hereditary and congenital scoliosis, but it never caused any problems until I was 40+ years old.
~ 76 degree curvature had increased 2 degrees in two years 1999-2001; indicating surgery was necessary.
~ Surgery in March of 2001.
~ Fusion and insturmentation of C7 - T9.
~ Fourth rib removed; 5th and 6th rib cut back halfway; removed ribs were morselized and used for the grafting, plus additional bone harvested from hip.
~ After tthe hardware was attached, spine was straigntened 20+ degrees.
~ 2 weeks in the hospital.
~ Brace worn for five months. Bone growth stimulator device also worn several hours per day.
~ PT 5 mos. after surgery caused increased pain.
~ Follow-up surgery to remove hardware scheduled for Feb. 2002.
~ Round 2 of PT 2 mos. after hardware removal.
~ Medically released to return to full activity in July 2002.
~ Increased pain upon returning to regular work schedule.
~ Round 3 of PT in April/May 2003; continually increasing pain.

 
Old 07-01-2003, 07:56 AM   #6
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Join Date: Jun 2003
Location: Broomfield, CO United States
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andrea319 HB User
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Don't ask me how they e-mailed me someone else's username but they did. I couldn't hang with bunnykitten anyway. andrea319 is me. I'm the tethered cord girl. So, thank you so much for all your replies. I thought I would go unnoticed. I did a search for tethered cord and am anxious to hear from franjo. Hope she gets online soon. Thanks guys!

 
Old 07-08-2003, 12:56 PM   #7
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franjo HB User
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Hi Andrea~

ACH! My computer is still down...I'm at the library now, but won't be able to stay on long....my 3 yr. old is with me. I'll try and get in here again before Friday.

Looks like we're both going into the final stretch, huh? I do hope we'll get a chance to talk before then. I'd be glad to answer any questions I can. I'm sorry for the reasons that brought you here, but it is always nice to find someone who is going through the same things.

The 15th of July will be my 2nd untethering. I too, have experienced motor losses, but only in my right leg, due to my having a split cord and only one side being tethered. The past two months have been very difficult getting around. I'm anxious to get this behind me, so they can go ahead with my fusions.

I hope you're able to post again before Friday. I'll make a point to check the boards then. Until then, welcome to the boards!

God Bless,

~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
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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

 
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