Guest guest Posted November 15, 2008 Report Share Posted November 15, 2008 In a message dated 11/15/2008 11:11:22 A.M. Eastern Standard Time, lpizzillo@... writes: Anyway, I just wanted to share our very positive outcome! Also how many of you who had a thickened filum had a retether occur? I hope you all realize I'm not posting this to brag, I'm posting this b/c I'm happy and hoping this gives others some hope for their situation too! , I am SO happy for you both! That is great Connie Mom to Sara 17, Nicky 10 (GI issues, megacolon), and 8 (CRS/VACTERLS incl. tethered spinal cord (repaired 9/00, 8/06) perineal fistula imperforate anus (repaired 5/00, managed with daily Exlax), single kidney, PDA (closed on its own), malformed pelvis and hemisacrum, long segment lumbosacral levoscoliosis with hemivertebrae (spinal fusion T11-sacrum 8/06), extra left rib, genital anomalies with hypospadius (repairs 9/00,11/00, 5/01,12/01,12/03), hypoplastic left leg with clubfoot (repaired 5/01) tibial torsion and 4.5cm length discrepancy - wears AFO and 3.5cm lift, SUA, GI reflux, DGE/gastroparesis, mild swallowing dysphagia, eating issues and the most beautiful smile ever) conni60640@... Our website: _http://members.tripod.com/conni60640-ivil/_ (http://members.tripod.com/conni60640-ivil/) VACTERL/VATER support _http://health.groups.yahoo.com/group/VACTERLNetwork/_ (http://health.groups.yahoo.com/group/VACTERLNetwork/) TC support group _http://health.groups.yahoo.com/group/LMC-TCS/_ (http://health.groups.yahoo.com/group/LMC-TCS/) Congenital scoliosis support group _http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/_ (http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/) Anorectal malformations support - The Pull-Thru Network _http://www.pullthrunetwork.org/index.php_ (http://www.pullthrunetwork.org/index.php) S. Jersey **************You Rock! One month of free movies delivered by mail from blockbuster.com (http://pr.atwola.com/promoclk/100000075x1212639737x1200784900/aol?redir=https:/\ /www.blockbuster.com/signup/y/reg/p.26978/r.email_footer) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2008 Report Share Posted November 15, 2008 YAY!!!!!!!!!!!!!! and thanks for sharing!! In a message dated 11/15/2008 11:07:25 A.M. Eastern Standard Time, lpizzillo@... writes: Hey everyone - I know we often say we don't hear enough positive stories on this board so I thought I'd share Emma's. We did her 6 months post op tests on her kidneys and bladder and the results couldn't have been better. Short recap - Emma had a normal MRI, but she had other symptoms of tethered cord - neurogenic bladder that was the biggest they'd ever seen in a 3 year old. She didn't empty it fully (only halfway and her halfway was the point where a " normal " bladder person would be full) and it was backing up causing hydronephrosis and damaging her kidneys. She also had constipation. We found a neurosurgeon who said we could do the tethered cord release though she had a normal MRI b/c she was only getting worse and she had sooo many symptoms, etc. He said it had a 50/50 chance of it working with a normal MRI. He preformed the surgery and found once in there she had a thickened filum. Immediately after the surgery we saw results - she started recognizing when to use the bathroom and going frequently, had to go off her laxitive, etc. Other things happened to, she potty trained immediately, she stopped waking up at night crying for no reason, her temper tantrums stopped. 6 months later (last week) we went in for some post of checks of her kidneys and bladder. The results were way better than we could have hoped for. Her bladder now empties FULLY and her hydronephrosis causing kidney damage is GONE. There is no pressure on her kidneys from her bladder not functioning so they are functioning correctly. In short, she's a totally NORMAL HEALTHY kid now. Sure we have to watch her for signs of retether at growth spurts but for now her life is 100% better than it would have been without surgery. Anyway, I just wanted to share our very positive outcome! Also how many of you who had a thickened filum had a retether occur? I hope you all realize I'm not posting this to brag, I'm posting this b/c I'm happy and hoping this gives others some hope for their situation too! **************Get the Moviefone Toolbar. Showtimes, theaters, movie news & more!(http://pr.atwola.com/promoclk/100000075x1212774565x1200812037/aol?redir=ht\ t p://toolbar.aol.com/moviefone/download.html?ncid=emlcntusdown00000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2008 Report Share Posted November 15, 2008 Congratulations! I am so happy to hear that! I just hope everything goes well with my baby girls surgery too! Sent from my Verizon Wireless BlackBerry A positive story! Hey everyone - I know we often say we don't hear enough positive stories on this board so I thought I'd share Emma's. We did her 6 months post op tests on her kidneys and bladder and the results couldn't have been better. Short recap - Emma had a normal MRI, but she had other symptoms of tethered cord - neurogenic bladder that was the biggest they'd ever seen in a 3 year old. She didn't empty it fully (only halfway and her halfway was the point where a " normal " bladder person would be full) and it was backing up causing hydronephrosis and damaging her kidneys. She also had constipation. We found a neurosurgeon who said we could do the tethered cord release though she had a normal MRI b/c she was only getting worse and she had sooo many symptoms, etc. He said it had a 50/50 chance of it working with a normal MRI. He preformed the surgery and found once in there she had a thickened filum. Immediately after the surgery we saw results - she started recognizing when to use the bathroom and going frequently, had to go off her laxitive, etc. Other things happened to, she potty trained immediately, she stopped waking up at night crying for no reason, her temper tantrums stopped. 6 months later (last week) we went in for some post of checks of her kidneys and bladder. The results were way better than we could have hoped for. Her bladder now empties FULLY and her hydronephrosis causing kidney damage is GONE. There is no pressure on her kidneys from her bladder not functioning so they are functioning correctly. In short, she's a totally NORMAL HEALTHY kid now. Sure we have to watch her for signs of retether at growth spurts but for now her life is 100% better than it would have been without surgery. Anyway, I just wanted to share our very positive outcome! Also how many of you who had a thickened filum had a retether occur? I hope you all realize I'm not posting this to brag, I'm posting this b/c I'm happy and hoping this gives others some hope for their situation too! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2008 Report Share Posted November 15, 2008 Hey everyone - I know we often say we don't hear enough positive stories on this board so I thought I'd share Emma's. We did her 6 months post op tests on her kidneys and bladder and the results couldn't have been better. Short recap - Emma had a normal MRI, but she had other symptoms of tethered cord - neurogenic bladder that was the biggest they'd ever seen in a 3 year old. She didn't empty it fully (only halfway and her halfway was the point where a " normal " bladder person would be full) and it was backing up causing hydronephrosis and damaging her kidneys. She also had constipation. We found a neurosurgeon who said we could do the tethered cord release though she had a normal MRI b/c she was only getting worse and she had sooo many symptoms, etc. He said it had a 50/50 chance of it working with a normal MRI. He preformed the surgery and found once in there she had a thickened filum. Immediately after the surgery we saw results - she started recognizing when to use the bathroom and going frequently, had to go off her laxitive, etc. Other things happened to, she potty trained immediately, she stopped waking up at night crying for no reason, her temper tantrums stopped. 6 months later (last week) we went in for some post of checks of her kidneys and bladder. The results were way better than we could have hoped for. Her bladder now empties FULLY and her hydronephrosis causing kidney damage is GONE. There is no pressure on her kidneys from her bladder not functioning so they are functioning correctly. In short, she's a totally NORMAL HEALTHY kid now. Sure we have to watch her for signs of retether at growth spurts but for now her life is 100% better than it would have been without surgery. Anyway, I just wanted to share our very positive outcome! Also how many of you who had a thickened filum had a retether occur? I hope you all realize I'm not posting this to brag, I'm posting this b/c I'm happy and hoping this gives others some hope for their situation too! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2008 Report Share Posted November 15, 2008 , Thanks for sharing your great news! sherri Our Family Is Growing! Our Joy is Doubled! www.camimei.blogspot.com adopted 8-12-07, Xiajiang, Jiangxi, PRC www.letitbechina.blogspot.com LOI: 8 -06-2008 PA: 8-18-2008 DTC: 10-23-2008 LID: 11-04-2008 _________________________ Dh: Mark, married 24 years DD: 23yo DS: 18yo DD: 14yo Subject: A positive story! To: tetheredspinalcord Date: Saturday, November 15, 2008, 11:06 AM Hey everyone - I know we often say we don't hear enough positive stories on this board so I thought I'd share Emma's. We did her 6 months post op tests on her kidneys and bladder and the results couldn't have been better. Short recap - Emma had a normal MRI, but she had other symptoms of tethered cord - neurogenic bladder that was the biggest they'd ever seen in a 3 year old. She didn't empty it fully (only halfway and her halfway was the point where a " normal " bladder person would be full) and it was backing up causing hydronephrosis and damaging her kidneys. She also had constipation. We found a neurosurgeon who said we could do the tethered cord release though she had a normal MRI b/c she was only getting worse and she had sooo many symptoms, etc. He said it had a 50/50 chance of it working with a normal MRI. He preformed the surgery and found once in there she had a thickened filum. Immediately after the surgery we saw results - she started recognizing when to use the bathroom and going frequently, had to go off her laxitive, etc. Other things happened to, she potty trained immediately, she stopped waking up at night crying for no reason, her temper tantrums stopped. 6 months later (last week) we went in for some post of checks of her kidneys and bladder. The results were way better than we could have hoped for. Her bladder now empties FULLY and her hydronephrosis causing kidney damage is GONE. There is no pressure on her kidneys from her bladder not functioning so they are functioning correctly. In short, she's a totally NORMAL HEALTHY kid now. Sure we have to watch her for signs of retether at growth spurts but for now her life is 100% better than it would have been without surgery. Anyway, I just wanted to share our very positive outcome! Also how many of you who had a thickened filum had a retether occur? I hope you all realize I'm not posting this to brag, I'm posting this b/c I'm happy and hoping this gives others some hope for their situation too! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2008 Report Share Posted November 17, 2008 Brag all you want !! Sooo happy for you and Emma! Thank you for sharing such an uplifting story, it is good to see! Subject: A positive story! To: tetheredspinalcord Date: Saturday, November 15, 2008, 4:06 PM Hey everyone - I know we often say we don't hear enough positive stories on this board so I thought I'd share Emma's. We did her 6 months post op tests on her kidneys and bladder and the results couldn't have been better. Short recap - Emma had a normal MRI, but she had other symptoms of tethered cord - neurogenic bladder that was the biggest they'd ever seen in a 3 year old. She didn't empty it fully (only halfway and her halfway was the point where a " normal " bladder person would be full) and it was backing up causing hydronephrosis and damaging her kidneys. She also had constipation. We found a neurosurgeon who said we could do the tethered cord release though she had a normal MRI b/c she was only getting worse and she had sooo many symptoms, etc. He said it had a 50/50 chance of it working with a normal MRI. He preformed the surgery and found once in there she had a thickened filum. Immediately after the surgery we saw results - she started recognizing when to use the bathroom and going frequently, had to go off her laxitive, etc. Other things happened to, she potty trained immediately, she stopped waking up at night crying for no reason, her temper tantrums stopped. 6 months later (last week) we went in for some post of checks of her kidneys and bladder. The results were way better than we could have hoped for. Her bladder now empties FULLY and her hydronephrosis causing kidney damage is GONE. There is no pressure on her kidneys from her bladder not functioning so they are functioning correctly. In short, she's a totally NORMAL HEALTHY kid now. Sure we have to watch her for signs of retether at growth spurts but for now her life is 100% better than it would have been without surgery. Anyway, I just wanted to share our very positive outcome! Also how many of you who had a thickened filum had a retether occur? I hope you all realize I'm not posting this to brag, I'm posting this b/c I'm happy and hoping this gives others some hope for their situation too! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2008 Report Share Posted November 17, 2008 YEAH!!!!! It's so good to hear a success story! May she continue on such a positive path to healing! -Shea A positive story! Hey everyone - I know we often say we don't hear enough positive stories on this board so I thought I'd share Emma's. We did her 6 months post op tests on her kidneys and bladder and the results couldn't have been better. Short recap - Emma had a normal MRI, but she had other symptoms of tethered cord - neurogenic bladder that was the biggest they'd ever seen in a 3 year old. She didn't empty it fully (only halfway and her halfway was the point where a " normal " bladder person would be full) and it was backing up causing hydronephrosis and damaging her kidneys. She also had constipation. We found a neurosurgeon who said we could do the tethered cord release though she had a normal MRI b/c she was only getting worse and she had sooo many symptoms, etc. He said it had a 50/50 chance of it working with a normal MRI. He preformed the surgery and found once in there she had a thickened filum. Immediately after the surgery we saw results - she started recognizing when to use the bathroom and going frequently, had to go off her laxitive, etc. Other things happened to, she potty trained immediately, she stopped waking up at night crying for no reason, her temper tantrums stopped. 6 months later (last week) we went in for some post of checks of her kidneys and bladder. The results were way better than we could have hoped for. Her bladder now empties FULLY and her hydronephrosis causing kidney damage is GONE. There is no pressure on her kidneys from her bladder not functioning so they are functioning correctly. In short, she's a totally NORMAL HEALTHY kid now. Sure we have to watch her for signs of retether at growth spurts but for now her life is 100% better than it would have been without surgery. Anyway, I just wanted to share our very positive outcome! Also how many of you who had a thickened filum had a retether occur? I hope you all realize I'm not posting this to brag, I'm posting this b/c I'm happy and hoping this gives others some hope for their situation too! Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.