View Full Version : Lindy update
19th November 2004, 05:26 AM
We brought Lindy to see her doctor last week. We learned then that the area where her kyphosis is, is much worse than we had believed it to be. She will also need to have that area corrected as well as have the hemivertabrae removed. This will be done through a fussion when she is 18 months. I had, up until now, been relieved that she did not need to have a fussion done. I don't know much about what to expect, but I have heard that it is one of the more unpleasant surgeries that can be performed. I sincerely hope that I have been misinformed. Does anyone out there have a child who has had a similar proceedure performed? If so, I would love to hear from you. I hate the unknown.
Our next step is to have a CT scan done to make sure that all of her internal organs have formed correctly. I believe that we won't find any problems in that area. I would think that there would be some indication by now if there were problems. and she is very healthy.
Just one more note-- Lindy is going to celebrate her first birthday on the 26th of this month! She's getting so big so fast. She has even started taking a couple of steps here and there!
25th November 2004, 07:58 PM
Hi Lindy's Mom,
I know that your question was directed to someone who has had experience with fusion, specifically congenital scoliosis. I personally don't have experience with either, but I've been around long enough to know that in today's day and age, there are surgical options besides fusion. Depending on how many vertebrae your doctor intends to fuse, your child may be left with a significantly short torso. This in itself could lead to serious problems later on when her internal organs are adult size and are being squished in a short torso. Opting for NO surgery is not an option for most congenital cases, because doing nothing will lead to severe deformity and certain premature death due to cardio and pulmonary complications.
You'll find that even though surgery is necessary for Lindy, different pediatric orthos will have different recommendations as to the best course of action. I would get 2nd, 3rd even 4th opinions - you'll find that not all doctors will discuss fusion. There is a new procedure called the "titanium rib" which many children with congenital scoliosis have had. Despite some setbacks such as infections etc., parents are generally very happy with the procedure . I have yet to come across one parent who has not given the procedure "rave" reviews. I don't know too much about it, but I think the rod is hooked around the ribs - the spine is left to grow to its full potential. Correction of the curvature is obtained as the device is lengthened every six months. The good news is that the doctors who developed this procedure are working on an expandable device, thereby eliminating the necessity for expansions every six months. If you need further information on the rib, let me know and I'll put you through to a mom who has had a lot experience with congenital scoliosis and the titanium rib.
Oh, HAPPY BIRTHDAY TO LINDY :hb: I hope she has a great day !
25th November 2004, 08:46 PM
If you suspect that there is absolutely nothing else wrong with your daughter and she looks "normal" and healthy, I would not subject such a young child to a CAT scan. However, having said that, some congenital cases have associated anomolies such as kidney/heart problems. I think it's because the spine forms in utero at the same time as these organs. I'm sure there are other less invasive/risky ways to find these things out besides a CAT scan. Here is an article I came across which states that CAT scans have the equivalent of 500 chest x rays
"A single CAT scan can expose a patient to the equivalent of 500 chest X-rays. We don't really know the exact risk of developing cancer related to exposure to radiation used in diagnostic test but we know that there is definitely a risk! This risk is justified in getting scans on patients who have specific complaints but I can't see how we can justify getting regular scans on perfectly healthy people who have no symptoms, especially when there is unlikely to be any benefit. What's more is that the CAT scanners were developed before 1976 when the FDA first began requiring that medical devices be proven to be safe and effective. Just because everyone uses CAT scanners does not necessarily mean that there is no risk. Because of the unknown risk of cancer developing later in life pediatricians have begun to call for fewer CAT scans in cases of head injury that result in bringing a child to the ER. When a scan is not medically indicated it's best not to do it. "
If it were me, I would tell them to go suck an egg !!! ;-)
25th November 2004, 10:47 PM
Hi Lindy's mom.
There's a good link for the titanium rib in this forum and it's well worth investigating and I totally agree with Sealy to get as many opinions as you can.
It's a good idea to have her internal organs checked out. Certainly check if there's an alternative to ct scan.Many of our congenital scoliosis members have additional medical conditions such as a missing or misplaced kidney, a heart defect of a genito urinary tract defect.
usually these problems would have shown by now but your doctor sounds like he's being wise to rule out these situations.
Let us know how she gets on over the next few weeks.
25th November 2004, 10:56 PM
I just finished editing my post when I noticed yours :P Sorry, I guess we had the same idea. I'm glad we totally agree :D
26th November 2004, 03:22 AM
Thanks for the advice. I appreciate it more than I can say. I have lots of new questions for my daughter's doctor now. Has anyone heard anything about the development of artificial discs? Lindy is missing all of hers in the area where she has kyphosis. I'd like to learn more about that if anyone has any info. Thanks again.
26th November 2004, 04:01 PM
I think I read that artificial discs have been introduced in the U.S. on a trial basis i.e., currently it's an FDA study. Only certain hospitals have been approved to do the operations. I don't know if Lindy would be a candidate, you would have to discuss that with your ortho.
I do know that the Titanium Rib has recently received FDA approval and more and more centres will start to do the procedure as doctors are trained - not all doctors have been trained yet. Criteria for inclusion may not be as stringent as it once was- when it was just a "study". If you are seriously considering the titanium rib, I would get the ball rolling ASAP. Once the child is approved for the rib, there could be a waiting period of up to six months ! When the titanium rib was just a study, many if not all of these children had to undergo CAT scans. I don't know if this will be necessary now, since it's no longer a study... I sincerely hope not. Although given a choice between fusion of a very young spine which has so much growth potential left, I would choose the rib. Once a spine is fused, it can NEVER be reversed - the growth plates of the affected vertebrae are removed so that fusion will take place.
It's a pretty scary position to be in, but take a deep breath and prepare yourself for a journey which will span many years. Just be aware that many have walked in your shoes and we're STILL here. :squeeze:
2nd December 2004, 08:21 AM
Hi Lindy's Mom my mantra on the site is keep a notebook. Write down everything with dates etc. Write in all your uestions. Write in all the answers given to you - read them back to the doctors. Ask for copies of treatment plans or what the doctor is going to put in the chart. You can ask for xrays to be copied to take them elsewhere and then take photos of them. Medical records are important for your child forever. It all seems so clear and then you wake up and try to remember something someone told you. Just keeping the notebook will help - I promise.
2nd December 2004, 01:38 PM
Hi Lindy's mom.I think the titanium rib implant is worth following up.Kimberly here on this site is an adult who is travelling to texas to have an assessment to see if it's suitable for use in an adult.She'll be able to give you details in the general discussion forum and put you in touch with the right people.I thought I read on the NSF forum that artificial disscs are now approved by FDA.There are two adults who have had them implanted on sso, one cervical implant and one lumbar implant with varying degrees of success.I have no information about the use of artificial discs in children.
Congenital kyphosis is a very tricky condition in a young child and you may find that surgery is her only option.But it's a good idea to satisfy yourself that you have explored all other possibilities.Even after fusion the titanium rib might help her lung capacity.
PM JFKimberly and she'd be delighted to help.
How much time do you have before you have to make a decision regarding the fusion surgery?
2nd December 2004, 04:39 PM
I came across this website on Artificial Discs... is this the same one ? It looks really promising... we can only hope that the dreaded fusion surgery will be a thing of the past one day.
2nd December 2004, 06:25 PM
That's the one Celia,the one they tend to use in Europe is the Bryan artificial implant.
2nd December 2004, 08:42 PM
You found me out, how did you know ? Everyone goes by a nickname around here ... Sealy is the name I go by for friends and relatives. You blew my cover... now I can't cuss 'n swear anymore :rant:
3rd December 2004, 03:48 AM
We have to bring Lindy in for a CAT scan in just two weeks. (Dec. 13) I'm dreading it, but her doctor seems to think it's neccessary because her right leg has started to hurt her. We had a few pretty rough days this week. She's been trying to learn how to walk, but we noticed on Saturday that she was favoring her right leg. At her first birthday party, of all times! By Monday it was much worse. She had actually started to drag it a little behind her when she crawled. Broke my heart to see her like that. After a visit to her pediatrician, we went for x-rays to see if it was possibly fractured. We were also told that it was possible her hip was slipping out of joint because of her spine. If that had been the case, we were told that we would have to get her to New Orleans right away for surgery. We didn't find out until the next day that it was neither. Her doctors seem to think it is her spine putting pressure on nervs, causing pain to radiate down her little leg. Now we're just waiting to see her specialist and to have the scan done to find out for sure what the problem is. I hate this!!!! Does it seem a little early for her to be experiencing discomfort? We were told that the scoliosis wouldn't cause any pain, but I guess her kyphosis is a different story.
While we're there, I plan to ask him about the titanium rib as well as the discs. I'll be sure to let everyone know what he thinks. Wouldn't it be so great if we could avoid a fusion surgery?! Keep your fingers crossed.
7th December 2004, 03:30 PM
How is it possible that the number of posts you've made never accumulates ? It always shows up as zero ? Also, does anyone know how to upload pictures to the signature section ? I wanted to upload a picture of my little cutie, but I don't know how.
7th December 2004, 04:04 PM
Holly's posts aren't accumulating because the system has a problem with username's with apostrophes,exclamation marks etc.Lindys mom would be fine.To alter your username contact myself or Titch and we'll sort it for you.
To add the pic Celia,
go to My Controls at the top of the page.
Go to personal profile
You can upload your pic as a jpeg from there.Just reduce it in size if you can to 200X200.
Again our site owner Titch is our resident expert if you have any difficulties.If you prefer you can e mail the pic to either of us and we'd be happy to size and add it for you.
7th December 2004, 06:36 PM
If/when the name is changed, we can do a quick count up of how many posts so far, and set that as the base number which the posts will count from (hope that makes sense).
I'm always happy to resize/optimise pictures for avatars :-) If the picture used is hosted on an external account, such as a Photobucket account, the system will try to resize it for you, to bring it down to no more than 200x200 pixels, but it's not very clever so it tends not to make a good job of it. Doing it manually tends to work better. If you upload a picture from your computer, it *has* to be no more than 200x200. Hope that helps!
7th December 2004, 06:56 PM
Wow, I did it !! Unbelievable... it took me soooo long. I think I need a cup of coffee :-) Thanks guys.
7th December 2004, 07:22 PM
She is exquisite Celia !
She's about the same age as my daughter(7)?
She'll be getting first communion next year and I can't wait to get her dressed up.
7th December 2004, 07:52 PM
Thank you so much :-) It's a toss up between this picture and the other one...I'm undecided, what do you think ? Oh... she just turned four in October.
7th December 2004, 09:19 PM
definitely the one with the green face!! :-D :-D
8th December 2004, 06:12 AM
Green faced and gorgeous! Cute kid.
8th December 2004, 04:23 PM
You know... they say she's the spitting image of me :D (NOT !!!)
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