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momofalotofrugrats
26th April 2005, 08:45 PM
Hi all well today was pretty much a waste of time. We still don't know much She is scheduled for an MRI on May 6th at 8:30 am They are thinking congenitail but can't be sure with out the MRI He his talking surgery but which type depends on the MRI. Her curve is measuring 70 degrees. We thought once he saw her we would be getting referred to a civilian doctor but seems that he is going to keep her case. I've asked for a second opinion for after the MRI is done so we can be sure that what we are being told is the best for her. He thinks he can get it some what corrected maybe back to about 20 degrees which would be marked in provement from 70 degrees I asked about the new thing Veptr I've heard about but he doesn't think she's a canditate for that but is willing to send her Films to doctor Campbell who came up with this to see so that's a plus. I guess we are now in a holding pattern until the MRI is done. Cathy

sins
26th April 2005, 09:14 PM
Hi Cathy,
Definitely send her films to Dr Campbell.Kimberly here on sso has had a recent appointment with Dr Campbell and it's well worth checking out every option before having the surgery done.He's got a huge pediatric practice.It will also give you a valuable second opinion.
talk to the parents on the infantile forum and see if they could recommend a civilian doctor who may be able to review her films and give another opinion.Also don't hesitate to ask your surgeon how many infantile surgeries he's done.
Sins

andrea
26th April 2005, 10:27 PM
Cathy

Sounds like a rather frustrating appt. 70 degrees is quite a curve on a little body - it's just a little more than Erin's at diagnosis. I still wonder why th doc thinks it's congenital. I know some experts are able to tell, but without an MRI I'm surprised he's said this to you. No harm in checking out the VEPTR, even if your doc doesn't think she will be a candidate. If it is congenital, then it may be one of her best chances for correction. What other surgery was he suggesting - do you know?

May 6th isn't far away, so you'll soon know what you're dealing with. You're doing all you possibly can at the moment so take some time to pat yourself on the back and give her a cuddle. You both deserve a hug.

Andrea
x

jfkimberly
27th April 2005, 12:52 AM
If the malformation of the vertebra(e) is obvious (or if there are missing vertebrae), they can tell that it's congenital from an xray. Mine was obvious. But mine was also so severe that it was discovered at birth, not at 18 months.

Cathy, I know you've been frustrated at being in the military system, but some day you might realize what a blessing it is. I was a military dependent, and had I not been, my parents would STILL be in debt... plus, I might not have run into Dr. Morrissey was active duty Air Force about the time that I needed surgery. He went on to become an esteemed pediatric orthopedic surgeon... even "wrote the book" on the subject. And he's in regular contact with Dr. Campbell. I guess it's a small circle of experts.

Anyway, try not to get discouraged in the military system. Just be persistent, and they'll either give you what you want or finally refer you out to get you to leave them alone. Either way, you'll get great care, and you won't have to worry about the cost.

As for Dr. Campbell... YES, ABSOLUTELY get the films sent to him if you can! I just went down to see him in February. The man definitely knows his stuff. Unfortunately, he can't do anything for me because I'm an adult and I have had a fusion, but your daughter's bones are not rigid, so even if it's congenital, he can help her grow up taller and straighter and have close-to-normal lung capacity.

momofalotofrugrats
27th April 2005, 03:00 AM
Thanks Everyone, As for the age my daughter is 2 and half this is the same doctor who without seeing her said he thought it was congenitail he hadn't seen her x-rays or her records.


As for being a military dependent I normally have no problems with it but when you hear the horroe stories we are dealing with at our base and the fact that we had 3 peds wanting her admitted for more test and an MRI on Friday to rule everything else out and they went back and forth casue it was cross military from Air Force to navy where she needed to be sent and then a doctor who's not looking at her at all and only talking to a doctor on the phone says no I think it's this she can wait. That's not very comforting to say the least. My dh has been serving for over 17 years and my Dad did 28 years so I totally understand the debt free thing but it's not like it was years ago when we were Campus Tri-care is the worst HMO I've ever seen or dealt with. cathy

jfkimberly
27th April 2005, 06:22 AM
Ugh. I'm in a good region, I think. I haven't had any complaints since I got back on dependent status last year.

But you're right. It's not like it was when I was a kid growing up. They seem to have scaled back a bit. Still, it's better than being private. I know. I was out of the system from age 23 until last year.

momofalotofrugrats
28th April 2005, 04:20 AM
Hi all thanks for all the support. I got the call from my local peds doctor and she is putting a refferal for Lauren to go to John's Hopkins In Baltimore Maryland so I decided if I'm going to drive that far for a second opinion I want to make sure that they have dealt with cases like Lauren's so I emailed the Head of the department who is a specialist and told him what we knew of the degree and what we had been told about fusion surgery being are only Option at her degree of curve he said no that's not true there are other options and he would be more then happy to see Lauren and let us know what all is available so I will be making an appt to see him after her MRI. I'm also calling the Shriners hospital in Philly PA that does the Veptr to see if she could possible be a candiate hope to get both of these set up shortly after her MRI Wish me luck. Cathy

LindysMom
28th April 2005, 05:35 AM
Hi Cathy. My 17 month old daughter, Lindy has congenital scoliosis caused by a hemivertebrae and a 70 degree (and rapidly increasing) kyphosis caused by a complete anterior failure of segmentation. I know your anxiety and I feel for you with my whole heart. It souds like you are doing everything you can to get your child the help she needs though. Good for you! The best advise I can give you is don't be afraid to ask questions and do plenty of research. There is a doctor Randall Betz at the Shriners hospital in Philly that is doing incredible things with spinal abnormalities. My daughter's doctor told me about him. He's worth checking into.
If your child does have congenital scoliosis, surgery is usually the only option available. For some reason, casting doesn't work and neither do rods. She may have to undergo a fusion. I hope not.
My Lindy will be having surgery next month on the 26th. We had hoped to avoid fusing her spine and for a while it looked as though we weren't going to have to. They hate fusing the spine of such a small child. She barely weighs just a little over 20 pounds. She's a tiney little thing. We had the rug pulled out from under us last Friday when we were informed that because her curves are progressing at such a high rate, they will have to do at least a partial fusion. Her spinal growth will be limited because of this. It wasn't the news we were hoping for.

I just want you to know that I understand what you are going through. As parents we would gladly trade places with our children so that they wouldn't have to go through such difficult things. Just remember that you aren't alone in what you're going through. I wish you and your little one lots of luck. I'll remember you both in my prayers.

Oh! I almost forgot to ask! How old is she?

Marti
28th April 2005, 05:44 AM
Cathy-
My 2 1/2 year old cousin is being treated at Johns Hopkins right now for something totally different, but after hearing about how great his treatment has been, I'd trust them with anything.

jfkimberly
28th April 2005, 09:37 AM
LindysMom, where is Lindy's curve (thoracic, lumbar)? Have they looked at alternative-to-fusion operations? The there's the titanium rib project, which seems ideal for Lindy. Have her films been submitted to Dr. Campbell or to one of the centers where he's trained surgeons? I know they must have considered alternatives... they don't take fusion on such a young child lightly at all. But I'm so frustrated hearing this.

On the other hand, I am an adult survivor of an equally severe case. I had fusion at 11 months, and other than the reduced lung capacity I'm doing well.

sins
28th April 2005, 11:38 AM
Hi Cathy,
Good luck with your new appointments.Before agreeing to surgery, just make sure you explore every possible option out there.You're doing the right thing and she'll thank you for this in later years, believe me.
Let us know how you get on.Is your insurance covering this?
Sins

momofalotofrugrats
28th April 2005, 03:00 PM
Lindysmom

I'm so sorry to hear you have to have the surgery done especially as young as she is. We were being told by one military doctor that it was our only option also I contacted the head of Peds at John's Hopkins Last night and he surprised me by getting back to us so quickly. I said no there are other options out there and he's more then willing to see Lauren her degree is also 70 . Did they send all the information out on your daughter case to one of the Doctor's doing the Veptr like doctor Betz did you see him? Lauren's Curve is very high I'm not sure what it's called. How fast is lindy's curve progressing? We are being told that even with fast progression we are only looking at 1-2 degrees a month but when I figured that at what she is now that means at 2 degrees she should of still been under 70 degrees as she's 2 and half. I plan to contact shriners also The way I figure it you can't see enough doctors before deciding what to do especially when we were being told Fusion right a way also. I just want the 6th to get her so we can get the MRI done and know more of what we are dealing with. I will also keep your little one in my prayers. Feel free to email me directly if you would like. I don't know much but I'm learning more then I ever wanted too. Cathy

momofalotofrugrats
28th April 2005, 03:02 PM
Martha

Thanks for that. I emailed the head guy of the peds department last night he must of been on duty last night as he got back to me very quickly and was willing to see Lauren today if I could of made it up there. I could as I have to wait for the authorization from the Tri-care people. Plus I think it'll be better to have the MRI in hand so he can have all information to let us know what our options are. Cathy

momofalotofrugrats
28th April 2005, 03:05 PM
Hi Sins


Thanks for all the support. Yes soon as I get the authorization from the tri-care people which is our military insurance it will be covered for the second opinion but before they will let us have more then a second opinion the Doctor at John's Hopkins has to have something different to say on the course of her treatment. Cathy

LindysMom
28th April 2005, 05:23 PM
Hi to everyone. Thanks for the concern and good wishes for my Lindy-Bug! My daughter's Dr. is a close and personal friend of Dr. Cambell's. They've actually discussed her situation at length and still feel that surgery is her only option. Our doctor also had us bring her in to a conferance that he was having last week with about 50 or so of some of the most impressive doctors in the U.S. He had there with him the head professor of pediatric spinal surgery from Harvard Medical School. They all for some reason feel that this is our only course of action at this point. My husband and I are heart-broken over the news we got there, but we do feel confident that we got her to the best available to us. I guess it's all in God's hands now and I am trying my very best to believe that Lindy will be taken care of. I guess part of me will always second guess myself. Let's just all pray that the doctors are right and that there will someday be better alternatives for children who have these sorts of spinal deformities.
Thanks again for the encouragement. It means more to me than I can express to know that we aren't all alone. Sometimes it feels that way.

jfkimberly
28th April 2005, 10:34 PM
Lindy's experiences sound just like mine, just delayed a year. I, too, was the subject of a huge orthopedic seminar. And I'm a case study in Dr. Morrissey's book. I'm going to find the thread where you posted about her surgery to paste my mother's reply to your concerns.

sins
29th April 2005, 01:17 PM
It really seems like you've exhausted every alternative option for Lindy.
As a parent, you have done everything possible to obtain the best treatment for your daughter and in future years, you will have nothing to reproach yourself for.That's all any of us can do and at the end we must make our decision to do what we can for our children.
Aggressive congenital scoliosis still poses difficult challenges for the best of doctors and I think will continue to do so for many generations.
Lindy is very fortunate to have the best of medical and parental care and please don't be so tough on yourself.You have no reason to second guess.
Sins

LindysMom
4th May 2005, 11:27 PM
Thanks for that, Sins. Really. I tend to be hard on myself.
Holly