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View Full Version : Scoliosis and Tethered Cord (10 year old daughter)



smileyskl
08-14-2008, 10:02 AM
I have never posted before but I have been reading posts on this forum for about a year now. In September of 2007, my 9 year old daugter was at the pediatricians office for a skin condition when he recommended she see a orthaepedic sugeon because her spine seemed curved. She had been to a check-up every year of her life and this was the very first time this was detected so it must have happened fast. Her curves when checked were Top - 23 and bottom - 23. We talked about bracing but it had to be delayed because a follow up MRI showed a tethered cord that needed surgery. Two months later (a couple of weeks after her 10th birthday) on christmas break, she had surgery for the tethered cord (done by a neurosurgeon). We were told to report back to the orthapedic surgeon for scoliosis follow-up in three months. When we returned (approx. 7 months from first sign of scoliosis her curves were T- 45 and B - 45. This was quite a shock because we believed her scoliosis was caused by the tethered cord and it would be much better or gone. We went that very day and had a boston brace fitted and shes been wearing it for three months. Today she is going for her first follow-up after the brace to see how its working. We are praying for a miracle. The surgeon told us that the tethered cord could reoccur and this complicates her case. He also said surgery would be necessary if the brace doesn't help. Does anyone else on this forum have experience with scoliosis and tethered cord. I haven't heard tethered cord mentioned at all since reading these however, I have learned lots or useful things and sometimes it helps just to know we are not alone in all of this. I want my daughter to talk to some other kids on the site about these issues but even though she wears her brace without complaint, she just gets upset talking about it. She feels like the only 10 year old ever to have this problem. Sorry this is so long, I guess I am just unloading a little. I am wondering about the relationship between tethered cord and scoliosis. Also, any other advice would be much appreciated. Thanks alot.

Smileyskl

mariaf
08-14-2008, 10:25 AM
Hi there,

I just wanted to welcome you. My son is 9 and was diagnosed over 7 years ago. You can see from my signature that he was braced for a few years and also had surgery (VBS) so your daughter is not alone - although I can CERTAINLY understand these kids feeling as though they are. Very often they may not see other kids at school with apparent medical issues, etc. Has she ever been on Spinekids? There are lots of kids on there dealing with scoli and other related conditions.

I am hoping that Carmell sees your post - she can give you some info on the tethered cord and is a wealth of great information and support on scoliosis in general.

Best of luck and keep us posted!

smileyskl
08-14-2008, 12:54 PM
Thanks for your reply. Actually, another member also suggested Spinekids. I am going to try to get my daughter set up on that today. I hope I do get some feedback on the tethered cord. I would love to get another perspective on that. Most people have no idea what your I'm talking about when I mention it. I can tell you have had quite a bit experience with scoliosis. How has the stapeling worked. My daughters doctor mentioned that but as a possible option but he doesn't do that particular surgery. I would probably have to go through Shriners for that. I live in Mississippi and have pretty good insurance so I haven't checked into Shriners yet. Is it a complicated process to be approved for help?? I have heard they are the best.

Smileyskl



Oh, actually I see you said he's holding at 30. That is great:) I am wondering if that surgery is as invasive as a fusion? What was the recovery time and how long does the surgery last? We may be discussing this again at her doctors appt. in a while so I am trying to think of things I may need to discuss.

Thanks alot!!:):):)

mariaf
08-14-2008, 03:31 PM
Hi again,

I actually e-mailed Carmell to see if she could pop in and help out with regard to the tethered cord and I know that she will :-)))

It's funny, there actually IS someone at the University of Mississippi in Jackson who I'm told does the stapling, but I have no personal experience with him. However, Dr. Betz gave me his name so that's a pretty good endorsement. You are correct, though, that Shriners in Philadelphia is THE place to go for VBS/stapling. Since you expressed an interest, please feel free to check out the VBS website - see my signature. You can also feel free to e-mail me anytime with questions.

It is NOT at all a complicated process to be approved for treatment at Shriners. If you wish to set up a consult with the team in Philly, just contact Janet Cerrone (her contact info is also in my signature).

Well I hope we hear from Carmell soon and please let me know if there is anything else I can do for you.

smileyskl
08-14-2008, 09:04 PM
Thanks for all your help. We went to the appt. today at 3:00 and her curve has progress several more degrees from 43 to 46 on the top and middle curve and from 27 to 39 on the lower curve. He is giving three more weeks to try more pads in the brace and then we go back to possibly talk surgery. He says on a risser scale of growth 0(child) - 5 (adult) she is still a 0 so has a lot of growing left. He is thinking on the lines of the growing rod. I know several top people at UMC in Jackson so I will check into the stapleing. I am so glad to talk to people who have experienced some of this. Thanks again.

Smileyskl

borngmama
08-15-2008, 05:54 AM
Hi,
I suspect my daughter has a tethered cord ,can you tell me if your daughter was having any signs of a it?
I agree,spine kids would be great for her.

Jennie

mariaf
08-15-2008, 07:43 AM
Smileyskl,

Here's the doctor at UMC I was referring to:

Dr. Lawrence Haber
The University of Mississippi Medical Center
2500 North State Street
Jackson, MS 39216
Consultation Info: Erin @ 601-815-1887
Main Line: 601-984-6525
http://www.umhc.com/Health/Content.asp?PageID=P02775

Good luck.

Again, guys, I hope Carmell will respond soon (perhaps she's away) - I don't know much about tethered cord but she sure does!

smileyskl
08-15-2008, 08:14 AM
Jeannie,

My daughter didn't have any symptoms at all when her tethered cord was discovered. Symptoms of a tethered cord include back and/or leg pain, bladder or bowel trouble (going alot or not being able to hold it) and the most scary of all is paralysis.:eek:My daughters neurosurgeon said that he has seen several people with tethered cord after they have done a split, or back-flip or something in gymnastics or just playing and it snapped. It also can cause long term bladder and bowel problems. At the time, my daughter was in her 5th year of Dance so we were thanking God that it was discovered before any of that happened. Her tethered cord was discovered when she had a MRI after she went the first time to the pediatric orthaepedic specialist. He automatically does one MRI to see if there is any cause for the socliosis or if its idiopathic. It showed a cyst-like thing called a syrinx on her spine on the MRI. From there we had to see a neurosurgeon who was able to determine that the syrinx was caused from a tehered cord. We had surgery a month later. The surgery was not very invasive (a 3 inch incision) because they did it through a microscope. She was at the hospital for 3 days and pretty much back to normal within a month and completely released after 3 months. I would strongly recommend talking to your doctor about your suspisions. Tethered cord can be very dangerous left unchecked. There is a lot or good information on the internet about tethered cord. I looked under neurosurgery and under spina bifida (sometimes it can be related) but not in my daugters case. My daughter had always been a perfectly healthy child with no medical issues up until this point. Let me know if you have any other questions. I hope things turn out okay. I will pray for you.:)

Smileyskl

smileyskl
08-15-2008, 08:21 AM
Mariaf,

Thanks for the name of the doctor. That is the doctors name the orthapedic specialist mentioned. I am definately checking into it. I am pretty sure its the doctor that her doctor consults with. Thanks for your help. I am still going to check with Shriners to.

smileyskl

smileyskl
08-15-2008, 12:56 PM
Jeannie,

I looked at some of you past posts to get an idea of your daughters history. I should of looked before I replied the first time, because after I read your other posts, I have a little more information. I am sure you have been on the spina bifida and neurology sites and there is lots of info there (as you probably know) I will tell you that like your daughters scoliosis, my daughters diagnosis came about really fast (she always had yearly checkups) and we were at the doctor for a completely unrelated issue when he noticed her curve. The curve was mild (23 top and bottom) to start with. I was told that she had idiopathic scoliosis at first but when the MRI showed the syrinx and tehered cord the doctor said it may be neurological scoliosis and that when the cord was fixed it wouldn't reverse the scoliosis but might stop the progression of it. Well, that is why we waited three months to go back for follow-up and then found out that in spite of the surgery, her curve had nearly doubled and now there is a third curve. The doctor then said again that it must be idiopathic. We have a well respected doctor, who specializes in scoliosis and he says that sometimes they just can't tell what kind it is and has to take it symptom by symtom. Also, as with your daughter, my daughter had just started developing and going through puberty a few months before all of this happened so I know that its related. I don't know if this helps, but thought I would share it since it sounds similar to your story. Let me know if you have any other question.

Sharon