View Full Version : Your Opinions, Please,..

02-17-2006, 02:48 PM
Okay, the pediatrician just called, and says that he and the radiologist went over Courtney's x-rays, and that she's less than he thought at the time of her appt. He says she's 11 degrees, and that is basically a 'rodo' score for all three curves combined,.. anyone heard of this? He says he'll just see her back in 1 year.

Her sway back is sooo bad that I find it hard to believe that part is measuring so little, and also I have been reading where you all talk about different degrees for different locations,.. why is he giving her a 'combined' score?

I asked if we could still see the pediatric orthopedic surgeon to be sure, and so he said he'll have him look at her x-rays, but that he doubts he'll say anything different. So, we don't get to go see the specialist now! I'm a little upset.

Any thoughts on this?

02-17-2006, 03:49 PM
This "rodo" score is new to me! Jamie's doctor always gives us a measurement for every Scoli. curve and a different measurement for her Kyphosis.

If I were you, I'd make an appointment with the specialist myself. I recently did that for Jamie's ankle--family doctor said it was badly sprained, never re-xrayed it and told us to remove the splint. However, when I called the orhto, they set up an appointment right away and put her in a cast! The x-ray tech and peditrician may be right, but if it would give you piece of mind, try to make the appointment yourself.

Mary Lou

02-17-2006, 04:40 PM
hi. DONT wait a year to go back. i got checked in may of 05. i had like a 5 degree curve. by the time i wentback (september) it had risen to 25. i would go back in maybe 3 months or so.

02-17-2006, 05:06 PM

Ditto what the others said. Make an appointment yourself to see a pediatric orthopedist. Regular pediatricians do not routinely read scoliosis xrays (unless they have a unique interest in scoliosis). I don't think there is such a thing as a "combined" reading in the orthopedic world. Each curve of the spine that is outside the "normal" ranges should be measured independently. I'm afraid I wouldn't put much stock into what the regular ped is telling you. Even having a radiologist help out. Neither are spine specialists. Good luck and let us know how things go.

02-17-2006, 09:35 PM
THANK YOU!! These are the same things I was thinking in my head, but I wanted to get your opinions on this in case I was over-reacting.

I even asked him specifically,.. what about her low back??? It sways so bad, isn't the 11 degrees just for the scoliosis portion side to side that is the least of her curves?... "It's all combined into one number," he said.

We have to have a referral to see the specialist,.. I'm going to press the pediatrician for it. I don't just want the ped. ortho. to read the x-rays they took, I want him to see my daughter. If he won't do it then I guess I'll have to get billed for out-of-network, and do it myself. My daughter's well-being is way more important than that. I'm really upset about this.

Also,.. can I ask, when you've had films done, do they just do them from one angle?? The tech had her face a panel and rolled her shoulders forward, then took two x-rays of her spine, and that was it. he said most radiologists can read the other curves from the one angle, but I guess I'm just a numbskull because I don't get how you can really tell how bad the backward curve is unless you get a side-view film. Am I wrong? I really don't know anything about this so perhaps you girls can enlighten me.

Thanks for all the help,.. I'll be seeing the pediatrician again Tuesday afternoon for my middle daughter's check-up so I'll press him for the appt. with the specialist again then. I'm feeling pretty irritated in the meantime. :mad:

(((hugs))) girls, and thanks for the support!!!

02-18-2006, 10:50 AM
Good luck with getting a referral.

When Jamie gets her x-rays done they do them from different angles--full x-ray of the front, full x-ray from the side, plus others-but I'm not sure if that typical of Scoliosis patients as Jamie also has Kyphosis and that is usually viewed from the side.

You are NOT a numbskull! What you are is a mom who is new to all of this and trust me, all of us have been where you are at some point. Everything you've said to me as how the radiologist reads an x-ray sounds pretty weird to me.

Although you are feeling very irrated right now, don't give up the fight. You are doing the right thing by pushing for a reaferral.

Mary Lou

02-18-2006, 11:12 AM
You don't have to have a referral to get your daughter into Shriners Hospitals. There are 22 of them across the nation. Pretty incredible doctors and hospitals. Their specialty - PEDIATRIC ORTHOPEDICS. They also have three burns centers. They only do Burns and Orthopedics. Nothing else. Doctors offices, x-ray, orthodics, hospital, etc., all in one building. You don't have to go here and there to get everything done. You can call your closest Shrine Hospital and do an application over the phone. The upside to this is, Shrine Hospitals and doctors provide their services for free to any child, regardless of income. They have the best of the best for doctors. The downside, you may have to drive a little distance to your nearest hospital. We drive 5 hours one way. Wouldn't have it any other way. It is well worth the trip for us, especially with three daughters with scoliosis/kyphosis.


02-18-2006, 05:01 PM
Ditto what Nikki said. We have pretty good insurance and tons of doctors to pick from in New York - many considered top notch - but choose to travel nearly 3 hours each way to the Philadelphia Shriners Hospital. I, too, wouldn't have it any other way. The care my son has received there has been THAT good.

best of luck to you,

Joe's Mom
02-18-2006, 05:17 PM
My son has kyphosis and scoliosis. He always gets two XRays . . one from the side and one from the back (or maybe front . . I'm not with him to know that for sure!) but I do know they often forget to do the side Xray and he has to go back to get it done when the doctor comes into the room and he realizes they didn't do it. The side view is specific to the Kyphosis, I think, and since most kids don't have both, the techs sometimes forget to do both.

The only time I have heard of "different" numbers in the measurement of curves is from SCREENING versus an Orthopaedist measurement of the spine form XRay.

The school nurse who identified my son via school screening reported a number that was around 11 or so. The doctor's number at first was 28, so I commented to him that the curve had increased since the nurse saw him or maybe the nurse was wrong? He told me that the number from the nurse was a screening number and not a true measurement of the degree of curvature. His 28 degrees was a true measurement of the curvature.

Never heard of any combined number score ever.

We get one number score for the kyphosis and a separate and very different number score for the scoliosis.

02-18-2006, 05:33 PM
I think the 11 from the school nurse might be a scoliometer reading. It is kinda a level for the back. When it goes down the spine it can check for unevenness of the spine. I think up to 7 is normal.
If the pedi says that he doesnt need to see a peds ortho, maybe you need to be at a diff ped. The parents are usually right, and you are the only one that is around your son all the time. Get it checked out. I have never heard anything bad about shriners. I know there is a location in Oregon. Good luck.

02-18-2006, 05:54 PM
Butterfly 8t8, Just to let you know. We drive from LaGrande to Portland for our Shriners appointments. Don't know where you live in Oregon. But, the Portland Shrine Hospital is great. Check them out.


02-20-2006, 02:24 AM
Thanks everybody,.. all the support really means alot. I've been trying to get help for my daughter for 3-4 years now. Good to know about Shriner's, too,.. I saw their sign when I took my youngest for her oncology appt. at Doernbecher's Wednesday. Is that the one you go to, Nikki? I'm in Keizer, next to Salem, so I'm a lot closer. I've been driving back & forth to Portland for my youngest's specialty appts for a couple of years, but we always went to Emanuel. This was our first visit up to OHSU so I'm still trying to familiarize.

For now, I'm trying to just calm down a bit until Tuesday afternoon when we'll see the pediatrician again for my middle daughter's check-up,.. I'm going to really press him for the referral. if he doesn't cooperate, I'm going over his head and will press the issue further until I get the results I want,.. even if it means going elsewhere. After Tuesday, regardless of whether he goes ahead and gives us the referral or not,.. I'm changing pediatricians. He kind of creeped me out anyway, and obviously after this, I don't feel like I can trust his judgement on anything else either.

I'll let you all know what happens! (((hugs)))

02-20-2006, 12:36 PM
Butterfly, That's the one. I grew up in Salem, very familiar with Kiezer as that is where my best friend lived. I went to North Salem many moons ago, but I graduated from Cascade Sr. High in Turner.

You don't have to wait for your daughters pediatrician for a referral to Shriners. Call them and tell them what she was diagnosed with. They will fill out the application for you over the phone and process it. When it is processed you will get an appointment and go from there. Personally, I wouldn't wait on the pediatrician. You want someone that specializes in Pediatric Orthopedic treatment. That is exactly what Shriners does. And, as long as you child is diagnosed before their 18th birthday, they will treat the problem until they are 21 years of age at no cost to them.

Isn't the construction on that hill fun. I always let my hubby drive it. We go over again the end of April. And, then shortly after that, as Crystal has to have surgery on both of her feet.

Keep us posted on how things are going. You can tell your pediatrician you want to be referred to Shriners. You can also download an application and take it with you to the doctor appointment and have the doctor fill out the recommendation.

Let me know if you have any questions about Shriners.

02-20-2006, 06:06 PM
Okay, so I don't sit still well when I have to wait for something, LOL,.. I see the pediatrician tomorrow, but in the meantime, I've been 'researching' more information, and I think I found a perfect resource to take with me to show him how this is being handled inadequetly. http://www.rad.washington.edu/mskbook/scoliosis.html

What do you guys think? I like this because it shows a lot of examples, but also stresses about seeing an orthopedist, how fast curves can progress in prepubertal & pubertal children, how the curves should be measured, and that they should be measured individually... it also stresses getting not just the standing AP films, but also the lateral films,.. I almost feel like I know more about spinal curvatures just in researching the information for myself this past week, than that darn pediatrician does. :rolleyes:

Anyway, I printed out the entire thing to take with me, and I'm highlighting all the key points that regard to my daughter. I'm going to take my digital with me, and see if I can get him to put her films back up so I can get some snaps... that's what a lot of people on the other board do. I'm going to request the radiologist's report. I want to see how it compares to how this information says it should, as far as what type of information it should contain. I'm guessing it will be lacking since they didn't do everything they were supposed to.

I checked, and I can change doctors any time I want so I'll be doing that as soon as we're done with him tomorrow.... I did also find out that yes we do have to have a referral to see the pediatric orthopedic surgeon, but I also got the information on the Shriner's Hospital so if I can't get anyone to cooperate with me this week, then I'll try them instead. Perhaps I ought to just consider skipping over the rest of this, and go straight to Shriner's, but I do think I should see where I can get over the next couple of days first though,.. this insurance is costing us $1200/mo so I feel like I should insist on getting the care she needs out of it, or at least try first... we're certainly entitled. If I don't get anywhere by week's end, then I have the info sitting here for Shriner's. Thanks again for letting me know about it.

Well, I'd love input on the article,.. I also realized from it that my daughter has a double curve just for the scoliosis, not counting the kyphosis and the lordosis. Her lower curve goes to the left, and then curves over to the right, too, just above it, again not counting the exaggerated forward and backwards curves.

02-20-2006, 06:41 PM
Butterfly, It is good that you are doing some much research. You need to be really comfortable with everything. I did the same thing. I was like a kitty on a hot tin roof.

You also need to check how much your insurance will cover. They may say 100%, but that isn't always the case. That is one reason we used Shriners. The insurance said they would pay 100%, but when we really checked on the incidentals and things, they wouldn't pay for about $20,000 of the whole thing (Over $200,000.).

Besides, in my book, Shrine Hospital has the best of the best of doctors that do these treatments. If you daughter needs a brace, they make it for her right there, or they order one, and at no cost to you. Some of those braces get pretty spendy.

There are several reasons I am so pro-Shrine Hospital. All three of our daughters have scoliosis and/or kyphosis. Our 17 year old had surgery March 15, 2005, our middle daughter is a wait and watch, but they don't think she will progress any farther on a curve, and our youngest daughter wears a brace for hers. I can't even begin to think what our costs would of been on all of this. Second, it is a great place and great staff, from A-Z. Third, my husband is a Shriner, yes he wears the little funny red hat that you see in the parades. So, I probably hear more first hand what funding takes place to fund the hospitals and help with raising money for the hospital.

When they first evaluated Crystal, they weren't sure if they wanted to do surgery on her. She broke down in tears in front of the doctor and told him she was tired of being in pain all the time and something needed to be done. With that he realized immediately how bad she hurt and something needed to be done. She had quit growing by that time, so bracing wasn't even an option. She would of been happy with bracing if the doctor would of thought it would work. Today, I can't say she is 100% pain free, but she doesn't hurt like she used to.

Do get more than one opinion from Pediatric Orthopedic Doctors. You are allowed to do that. You don't have to go with the first one, and you don't have to go with who your pediatrician recommends.

I hope these things help. I tend to ramble and I apologize for that.


02-20-2006, 09:17 PM
No, no, please Nikki ( that's my middle DDs nickname, too, BTW, and same spelling ;) ), ramble on all you want,.. I'm the same way, and I appreciate all the information you've been providing. THANK YOU!

I keep contemplating whether I even want to go ahead and go back to that pediatrician tomorrow,.. why waste my time taking my other daughter to see him, if I feel so uneasy about his compitence, you know? And the more I think about what you've been telling me about Shriner's the more I think that maybe I'll go ahead and give them a call in the morning... after I cancel the ped. appt.

Now, since I already have really good insurance, and I have good income (although not much left over by the time I'm done paying for everything),.. will I need to pay a portion of the bill, or is it free to people no matter what? I noticed on the app that it wants insurance information. Also, it asks for a sponsoring Shriner,.. what do I do,.. leave it blank? I suppose as you said, if I call, they'll walk me through it all, LOL. I'm a worrier, too,.. I don't want to ask for something that we don't qualify for, or if it means someone else in greater need not getting the help. I guess you can see how ignorant I am about Shriner's,.. :p I've heard of them, and yes, have seen them in the parades, but I just don't really know much about it. I'd love to hear any more you're willing to share. And what does a 'Shriner' do aside from the little hat & parades?? Not poking fun,.. seriously don't know! :confused: Am interested!

Thanks again very much! (((hugs)))

02-21-2006, 12:51 AM
Butterfly (I like that name), Shriners is free to every child regardless of the parents income or insurance status. You won't ever see a bill. The purpose of the insurance information is that there are a few things that are billed to the insurance. For Crystal it was $2,500 of blood work. The insurance paid $1,000 of it and Shriners paid the rest. When I got the bill for the remaining $1,500 I called Shriners and asked them what I was supposed to do. They said nothing. That OHSU has to send out the bill to bill the insurance. But, that Shriners would take care of the balance. I never saw another bill after that.

Don't look at using Shrine Hospital as wanting Charity. It is not. It is getting the very best doctors in the world to take care of your precious child. You will qualify. They take all walks of life because they want what is best for the children. If you need any help filling out the application, call the Shrine Hospital. If they feel you need a sponsor to sign it, let me know. I'll have my husband find one for you. They are really easy to get.

We understand about having good insurance and good income, but being out of money after the bills are paid. I think it is the American Way. I couldn't figure out how we were going to handle another $20,000 in debt.

I'd like to share more with you about Shriner's. They are a fun group of men. Here's my e-mail - nikyergen@hotmail.com. If you would like to e-mail me I can give you more indepth explanation of the men in the funny little red hats. We tease my husband about his all the time. He takes it all in stride and is very proud to be a wearer of one of those funny little red hats.

By the way, if you don't like your ped doctor. Cancel the appointment and get into Shriners. It may take you a little while to get in, the case load is big. But, well worth the wait.


02-22-2006, 01:33 PM
Well, I went ahead and canceled yesterday's appt. w/ the pediatrician, and then at the same time let them know I wanted to switch to a new pediatrician so that's now in the works.

We're getting set up with Shriner's (THANK YOU!!), and they're having me fill out applications for all three of my girls because my other two girls are showing signs, too, now that I've looked at them more closely and know what to look for... you know, I'm feeling guilty for not noticing these things sooner! But, I hadn't on the other two before this,..

My middle daughter has one shoulder blade waaay higher than the other, and the shoulder on that side also looks like it starts from her neck about 1/2-3/4" higher than the other side. How have I not noticed this before??? Now, looking at her from the back, I can see how her left side looks larger porportioned than the right side because of how it is shifted. Her spine doesn't look or feel like a 'curve', but is very bumpy and almost jagged-like,.. as if the bones are each kind of poking in different directions all the way up,.. does that sound familiar to anyone?

My youngest daughter seems like she may also have a bit of a curve in her spine, not bad, but then about mid back it divets a little. There's about a 2" section where I can't feel her spine at all because it scoops in,.. does that sound like something?? And I don't know if it's just really bad posture, or if it's something, but her shoulders both roll forward really bad,.. I tried to get her to stand straight, but I couldn't seem to get her to,.. And, her left shoulder blade sticks out like it's poking out,.. the shoulder blades look even, but the one just really juts out. Anyway, Shriner's wants to see her, too.

I looked even more closely at my oldest last night by turning out the lights in the living room and then looking at her under a lamp so she was lit up, but the background was dark,.. it really helped to be able to see her curves so much better, and I was shocked. She, too, has the left shoulder blade that juts out. They are uneven, and below the left side, her waist 'creases', but only on that side, as if that side is slumped down. When she bends over, and I look from behind, she has a large hump on the right side of the spine, and then her left side just drops off in a severe slope, like she's twisting. From the side and front, I can see and feel how bad her ribs are sticking out,.. way out past her breastbone, like her whole rib cage is being thrust upward. I almost feel sick that I haven't noticed just how bad this is before this, except that her hair is waist length and that's how she wears it most of the time,.. most of her body is disguised by her long hair so I guess that's something I need to remind myself.

Anyway, thanks again for letting me know about Shriner's, too,.. they want to see all the girls, and reassured me of everything about the process. They encouraged me to take pictures from all the different angles and views for each of the girls to send in with the applications, and also let me know to prepare for about a 2-3 week wait on processing, but that I should call to check the status after 1 week. They're being so great!!

I would love comments from everyone on what I've described for each of my daughters here, too,.. if any of it sounds familiar in a way that you could help enlighten me on it. I'm still trying to educate myself on everything as much as possible,............... My girls are all twisted up, and I didn't even realize it, but now that I do and I know more about this, I'm not going to be passive with these other doctors' 'opinions' anymore. Shriner's here we come!

02-22-2006, 03:29 PM
Here's the good one. All three of my daughters have scolioisis and/or kyphosis too. Shriners didn't want to see just one, they wanted to see all of them. Let me give you a good piece of advice. Take at least one adult with you, possibly two. That way each adult can be assigned a child and can listen more intently, instead of you trying to listen on all three and sort it all out in the end. Be sure to ask for a typed transcript of the diagnosis and appointment. It will help you to decifer what is going on.

Shriners are wonderful people and I am proud to be part of that community. When you go for your appointment you will see kids that don't show any signs of a problem to kids that are very severe. They take treat of all of them with the same love and care.

When it came to Crystal pre-op appointment, Dr. Krajbich talked directly to her. He asked her what her questions were, what scared her, what made her the most nervous, what she expected the outcome of surgery to be, etc. Then the Anesthesiologist did the same. Then the variety of nurses that would be caring for her before surgery and in the recovery room did the same. Craig and I just sat and listened and watched. After each one was done with Crystal, they would ask if we had any questions, etc. They really worked hard at making Crystal comfortable.

I think you will really like your experience at Shriners. We did.

Don't feel guilty for not noticing your girls backs. It isn't uncommon to be missed by the parents. We missed ours and were shocked to find out all three of them had scoliosis and/or kyphosis. We felt guilty for a while. But, then realized that it wasn't our fault and that they were being treated now and that was what was important.

Let me know if you have any more questions.


02-22-2006, 04:13 PM
Thanks, Nikki,

I really appreciate your support. I'm not sure if I can pull off taking other adults with me, but I like the idea,.. at the same time I feel like I really want to be there for each of my girls' exams, etc. Do you know if I have to take them all at the same time, or will Shriner's be willing to make individual appts for them? I don't mind making separate trips even if I need to in order to do that. I'm pretty attentive and usually have questions about things as we go along, and the only two people I could ask about accompanying us, I don't know if one even could, and the other, well, is not attentive so I would feel like I was missing things even more so. I don't know who else to even ask,.. I don't really have anyone like that. I'm pretty much on my own here for the most part,.. neartest family is at least an hour in each direction, and most work (luckily, I work from home so I can homeschool, etc., too, and it makes my schedule pretty flexible.),.. I really only even get to see my DH when he comes home on weekends. Do you think I can do separate appts for the girls so I can be in on EACH of their exams, etc.?

Thanks for the note on requesting copies of the transcripts, too,.. even if I can be in each appt., I'll want to get those,.. I don't think anyone can manage to digest all the information that can come at you. I know it's good to try to take notes, or take someone with you just for an extra pair of ears,... I might be able to get one person for that, but I would still rather it was both of us, rather than me miss anything. ;)

Thanks again so much for all the info,.. you have no idea just how much I appreciate it, Nikki,.. THANK YOU. (((HUGS)))

Joe's Mom
02-22-2006, 05:29 PM
I live in PA. Our state has a program call "Medical Assistance based upon Disability" (Sometimes referred to as the "Loophole" or "Loophole Child". What it consists of is Medical Assistance Coverage (Medicaid) for children with certain handicapping conditions. The conditions covered are many and scoliosis is among the more severe of them. What happens is that, regardless of your financial status, if your child has a handicapping condition, he or she is able to get this secondary coverage. Your primary insurance coverage is used first and whatever isn't covered (through copayments or % payments or just amounts not covered for whatever reason) is then billed to the State. Sometimes they make a payment for the services (if the insurance company payment still falls under the "allowed" amount for the service, MA will pay up to the "allowed" amount) but more often it just means that the hospital or provider simply can't go after you for any extra that isn't already covered. Not a great deal for the hospitals or providers, but it does help families.

I have begun the preliminaries for my son, who may well need surgery this year. Our insurance has a 10% payment we much make, but it is capped at $1500 per individual and $3500 per family, thank goodness, but some just say you will be responsible for 10% or 20% or what have you.

My son is eligible until he is 21 years of age, so if he has surgery at age 17 or 18 this program will defray our expenses considerably.

Not sure what other states have this, but you may want to see if your states do as well. Sometimes it goes under the name CHIP.

02-22-2006, 05:37 PM
You can make separate appointments for each daughter. The only reason we do ours all on one day is because of the distance we drive.

I have to chuckle, we homeschooled our 3 girls up until last year. They wanted to go to high school and be more involved in the community. So, we let them and they are doing so well.

I don't know what your DH does for a living, but mine travels too. So, know what you mean about seeing them only on the weekends. He drove our semi-truck for many years, now he works for Eagle Freightliner here in LaGrande and travels away from home 4 days a week. I start a new job with Trebar Kenworth in Ontario, Oregon, on 3/6/06. Which will mean a move for us. But, my husband's job gets to move with us, so it makes the move much easier to take. This move does mean that we will see more of my DH.

I'm glad you used the info. I find that there are so many people that are uninformed about Shriners and don't know all the facts. I think you will like your experience at Shriners. It can be pretty intense, but with the transcripts, it will help.

Well, I better get. I have a few things to finish up this afternoon and a meeting to go to this evening. Keep me posted on how things are going.


02-22-2006, 09:17 PM
Joe's Mom,

Thanks for the info,.. actually, we do have the CHIP program here. I checked it out a couple of years ago when my youngest daughter became symptomatic of her Neurofibromatosis. We didn't qualify because we already had health insurance. Here, I was told, we would only qualify if we didn't have any ins. We had insurance, but it wasn't enough to handle her medical needs,... our out of pockets nearly ruined us. We're okay now, and because of our business, we were able to choose excellent coverage for both ourselves and our employees. I'm actually working on tryng to start up a non-profit to help other NF families who are in the same shoes we were,.. our income was too high, we already had insurance, and even though we didn't hardly have any debt aside from our mortgage & utilities, we couldn't keep up. We had 47 separate medical bills at one time just for my youngest, and were eating top ramen just so I could fork out $1000./mo. on making minimum payments to only half of those accounts, and I still had collections beating down my door telling me I was being irresponsible by not paying all the medical debt off. The nerve! Anyway,.. thank you for the info,.. unfortunately, out here it seems like you have to be eating catfood in the dark before you qualify for help,.. if you have good income and ins anyway,.. well, except for my now knowing about Shriner's. I honestly don't think people should have to loose everything before they are eligible to receive help,... thankfully, we got help from our community because they felt the same way.

Good luck with your son,..... I hope everything works out great for him & your family, too. (((hugs)))

02-22-2006, 09:57 PM

Thanks,.. I was hoping that was the reason you did them all at the same time,.. La Grande is quite a drive.

My DH doesn't travel, but our company is based an hour away. Funny, we used to live in that same town,.. the area was a better choice for basing our business. We relocated down here for a new job he had taken,.. after he had commuted for a year, and then after that got old, he stayed down here and came home on weekends,.. that got really old and 9 months later we decided to move here. He had job security. Well, a year later, apparently not, and since he was the highest paid employee and had actually just been promoted with a good raise less than 2 weeks before,... Well, long story short, 3 newbies replaced him at minimum wage. All of this right in the middle of the financial medical mess I just mentioned to Joe's Mom above... In many ways it ended up being a bigger blessing in the long run because we managed to get all the rest of the medical bills written off, and because of people in the community, we made it through all the hard stuff. Then,.. 7 months later, we started up our own business, as his former employer's ONLY competition for the entire state, and there's not much else in the surrounding states,.. was a great move on our part. But, now the kids & I are stuck down here and we're only seeing him on the weekends again until we can relocate back to where we came from, LOL. It's a struggle getting a company off the ground, and we are really learning why they say that growing too fast can be just as dangerous as not growing fast enough,... we're fighting to keep up with demand, and juggle everything else,.. such as me, running administrations (A/R, A/P, H/R, Payroll, Marketing, Website, the whole 9 yards) from a home office here so I can keep homeschooling, and everything else I'm supposed to try to do, and he's up there working 14-16 hour days, and doesn't include drive time because he's actaully living there during the week. We do have 2 full-time techs and 1 part-timer, but it's not enough. We really need to hire at least 1-2 more FT guys,.. we just aren't in a position to quite afford them yet... part of that is also due to our choice to provide the best health insurance we could find,.. not just for ourselves. Our business is only 8 months old, and is doing incredibly well already, but we're hanging on by our fingernails to keep up right now. Anyway,... we have to wait things out awhile before we can relocate again, and we're trying to prepare to buy the building & property that we're leasing,.. a year and a half left.

I'm glad to hear that you'll be seeing more of your DH,.. have to say, I'm a bit jealous, LOL!

How long did you homeschool your girls? I've been homeschooling mine since the start,.. but mine are still fairly young. The oldest is 9 1/2 and in 4th grade, middle is 8 and in 2nd grade, and the youngest is 6 1/2 and in kindergarten. With all the medical problems in our house, it's been good, too,.. the younger two have had a more difficult time obsorbing things. They're doing a lot better this year though since their other medical conditions have eased up on the pain side of things for them.

Goodness,.. how much of my life did you want to know,.. right, you didn't really ask, did you? LOL,..

I'll catch everybody after our genetics screening tomorrow,.. have a good night!

02-23-2006, 03:38 PM
I was just surpised we live in the same state, you are from the area I grew up in, and that we have done some similar things with our kids.

We actually started our kids in public school, but didn't like the out come. One of their teachers told them that mom wasn't going to be there all the time and that she should just quit relying on mom when she has a bad day. Wrong thing to say to my kids. Pulled them out and homeschooled them for 6 years. Our are almost 14, 15, 17. However, the public school they go to now is incredible.

Anyhow, I did enjoy reading about what you do. I find it interesting that you are forming a non profit for NF. I think that is wonderful. I can't imagine having all that you have to deal with. You are one busy wife, mom, lady. Keep up the good work.

Let me know what you find our from Shriners. I am anxious to hear when you have an appointmnet. Crystal and Michelle have their next appointments April 27, 2006. I probably won't got for that appointment, dad will. Starting a new job, I don't feel comfortable asking for time off. Dad will probably also go when Dr. Krajbich gets Crystals foot surgery schedule. That will be three or four days. His boss works work things in for him, so then he doesn't have to use his personal leave or vacation leave to go. Which I think is so nice.

Well, I better get. I have lots to do today. Tomorrow is Friday and I hate being tied to housework on Friday. The girls only go to school half days on Friday and we usually go to town in the afternoon and window shop.


02-24-2006, 12:28 AM
Well, today's appt. turned up with no NF for either of the two older girls, and they are still "on the fence" about me. The youngest is an absolute "yes' on the NF, which we already knew.

The genetist checked out all three of the girls' backs, and confirmed all of my new findings,.. every single one, and then some. The girls also are uneven in their shoulders and hips,... and after looking at me, too,.. says I have exaggerated Lordosis, for sure, too, and that my shoulder's are uneven also. Well, finally somebody gives me an explanation for my back pain after all these years. She checked out some other stuff for us, too, but most importantly confirmed all my 'findings' on all three of the girls... they all have scoliosis, in various different ways, and the oldest is definitely the worst twisting in all directions. She agreed that all three girls need to see an orthopedist right away, and is going to get us that referral. She's concerned about whether we'll actually get into Shriner's,... My thought is, "well, if you'll give us the referral,.. all I care about right at the moment is somebody who specializes in pediatric orthopedics actually seeing them.". I just want my kids taken care of before this has a chance to get any worse,.. or much. So, she's going to work on getting us the referral to see a pediatric orthopedic surgeon thorugh Kaiser, and meanwhile, I'm still going to file tha apps with Shriner's, too. Might as well cover all my bases... she may have just been being skeptical becasue she didn't approve of me trying to go outside of 'the circle', too,.. I know it sure seems like they are concerned about keeping patients on their own 'turf' as much as possible. I am already finding a lot of both pros and cons with having KP for ins.

Anyway, it's been a long day,.. 3 hours in genetics today, on the road 3 hours, misc other erronds we had to run, and I barely slept last night. I didn't get to bed until 11:00 PM, then woke again at 11:30 PM, 12:30 AM, 3:30 AM, 4:00 AM, 4:30 AM, 5:30 AM, and again at 5:50AM,.. my alarm was to go off at 6:00 AM so I just got up. I'm absolutely wiped out, and it's not even 9:00 PM here yet.

Hey, good luck with the new job! Thanks for all the support, and for the extra 'chatting',.. it's been really nice for me. I sure don't get enough of it. I'll keep you posted on things as we learn more. I'm so glad I found both of these support boards.


02-24-2006, 03:38 AM
Your doctor obviously hasn't been educated about Shriners. You will get into Shriners without a doubt. They don't refuse anyone. Why she would think you wouldn't "Get Into Shriners" is beyond me. If we got in with our girls, you will most definitely get in with ours. You obviously use Kaiser, which is a good insurance. However, they absolutely hate for you to go outside their system. Why I don't know. When I had Kaiser, I was very displeased with any medical care I got.

Hurry and get your apps into Shriners, time is of the essence. Give them a phone call, they should accept the apps over the phone. Lots of people do them over the phone. Everyone from millionaires to those that can't afford the gas to drive to an appointment. It doesn't matter. I am sorry I sound so harsh. I just get very tired of the uneducated assumptions people make about Shriners. They have no clue how Shriners operates. It has nothing to do with the parents income or anything. It has to do with an orthopedic problem that needs to be treated by the best doctors in the world. It's doctors like the one you saw today that prevent children from being seen by the best doctors in the world. You only want someone with lots of experience in your childs particular problem working on them. Too many kids get treated by someone that has done minimal work in the area they have a problem in and then have a lifetime of problems. I'm telling you this from personal experience. We trusted to many doctors. The best doctor we saw would only recommend our kids to Shriners. If we requested somewhere else, he would recommend it, because SHRINERS IS THE BEST.

You do not need your doctors recommendation to get into Shriners. They are not by referral only. Many people take their children there for a problem that hasn't been seen by any other medical person.

I am so frustrated with someone that would tell you that they doubt you would get into Shriners. That is so untrue. Please don't give into the Kaiser system. Please have your children seen at Shriners. You can see the doctor at Kaiser too. But, at least use Shriners for another opinion. It won't cost you anything but the gas from Salem to Portland and back. You won't get a bill for their opinion. I'd love to educate the doctor you saw today about Shriners. Then, she would probably readily do referrals to Shriners. Please trust me on this one.

Our doctor at Shriners, Dr. Krajbich is one of the leading surgeons in the world for pediatric orthopedic surgeons and scoliosis/kyphosis/lordosis treatment. He teaches these surgeries all over the world. I don't think we could of got much better than that. You probably won't get into him, but all of the doctors that work with him are very good to. We did see Dr. D'Amato twice and really liked him too. I would of felt complete comfortable with Dr. D'Amato treating our girls too. We requested Krajbich and had to wait for a while to get into him. You will get in much quicker with one of the other doctors. We requested Krajbich because Crystal has more than scoliosis/kyphosis to deal with orthopedically. She has to have surgery on her feet within the next 3-4 months. So, we anxiously are waiting for them to call us with a date for surgery. It may take two surgeries to completely get her feet done, but it's worth it. Dr. Krajbich is going to try to get it all done on the first surgery. It will just depend on how things go during surgery.

I am sorry I was so pushy, but your doctor doesn't realize that you don't have to have a referral to get into Shriners and they don't turn any child away. It is not Shrine Hospital for Crippled Children. It is Shriners Orthopedic Childrens Hospital. The reason for the name change is because of people like me. It had the word Crippled in it. In my eyes, my children weren't Crippled. But, yes, all three of my children have orthopedic problems. I didn't think we would get in either. But, we did and I am glad. Now, I had all this doubt and my husband is a Shriner. There had to be a lot of educating on me. Now, I understand the whole thing and get upset when someone gets discouraged from using Shriners because of someone else that is not informed.

I enjoyed my chat with you today too.


02-24-2006, 11:49 AM
Hi Butterfly,

I just want to say that I agree 100% with everything Nikki just said (Hi Nikki). My son's former doctor was also uneducated about Shriners and, if we had listened to her, my son would have been prevented from seeing one of the best doctors in the Northeast at Shriners Hospital, Philadelphia.

(By the way, I know many, many people who called and applied right over the phone. The only two crieteria to be met is that the child be 18 or under (existing patients may be seen until age 21 in come cases) and that the child have a condition that is treated at Shriners Hospitals).

Our former doctor called the stapling surgery my son had performed at Shriners "experimental" and blew it off without so much as a second thought. Well, thanks to that "experimental" procedure David no longer spends 22 hours of every day in a back brace and is getting, in my opinion, the very best care we could find for him ANYWHERE. Period.

It gets me so angry when doctors, either because they are uninformed or perhaps afraid of losing patients or whatever, discourage people from applying to Shriners. I know so many people who found Shriners care superior to the care they were getting before. (I guess Nikki and I will have to fight over the title of Shriners No. 1 Fan - LOL!)

We happen to be middle class, working people - lucky enough to have medical insurance. We could go to just about any doctor in NY if we wanted but choose to travel nearly 3 hours each way to see the docs at Shriners. Speaks volumes, doesn't it?

Good luck to you Butterfly. I would call Shriners right away - if you haven't already done so.

take care,

02-24-2006, 12:17 PM
I know we have an excellent doctor for Jamie, but the more I hear about doctors not wanting their patients to go to Shriner's, or doubting they will get in Shriner's etc., the more convinced I am that Jamie is in excellent hands with Dr. Segal. When we went to our first appointment with him, we had just seen Dr. Betz the month before. When Dr. Segal saw that, he asked why we were there? Why weren't we staying with Dr. Betz because we were in excellent hands with him.

It's reassuring to know at least some doctors are for Shriner's.

Mary Lou

02-24-2006, 12:27 PM
Mary Lou,

Yes, I recall you telling us that Dr. Segal said that. And, I agree, that would make me very comfortable with him. It shows that he is secure (rather than egotistical), open-minded and well educated in his field.

There should be more like him!

take care,

02-24-2006, 12:39 PM
Wow, thanks you guys! You've made feel a lot better,... Even when the Dr was saying what she did, I was still thinking in the back of my head, "Blah, blah, blah,.. I'm still trying Shriner's, too". I didn't say anything more to her because I just don't have the experience or knowledge about Shriner's to do it so I didn't tell her that I didn't care what she had to say, but I thought it. Don't worry, ladies,.. I'm still going to try to get in with Shriner's. ;)

Should I call a specific number though? :confused: Because the other day when I called, I had to leave a message, and when they called back I spoke with a wonderful gal for quite a period of time, but she's actually sending me the applications, and requested that I also send in pictures from all the angels to show all the various curves and issues with the girls,.. she said that might speed things along. She didn't offer to do it over the phone, and kept stressing on sending me the applications for ALL the girls, and so I didn't end up asking about it. Although now I do recall she said she had only worked there a few months. She said as soon as I get the apps in to plan on a 2-3 week wait, but I should call and check the status after 1 week. She, too, encouraged me that we'd get in, and they don't care one hoot about income or insurance.

I agree with everything you both said,.. I certainly was feeling that way, but it's difficult for me to speak up on something I don't know enough about,.. unlike when she started trying to talk to me about NF, and at first acted like I probably needed all this information about it, and I was able to inform her otherwise, including that I even possess one of the best physician's reference manuals on Neurofibromatosis. There probably isn't any information, of info they give out anyway, that she could give me that I don't already know. She finally changed her look, and ended up telling me she was impressed and that I was one of the most well-educated NF parents she'd ever met. Well, I don't know about that, but I know enough to ask informed questions, and press anything I feel uncomfortable about.... I'm working on that now with the Scoliosis/Kyphosis/Lordosis, LOL. :p

This gal started out nice, and the appt. did go well, but she also did rub me raw on a few subjects,.. one being Shriner's, another being homeschooling,.. anyone could tell she's "anti-homeschooling",... she kept asking all these questions, but not in a friendly-inquisitive sort of way,.. it was a judicial, condemning, and disapproving manner, and it really got my goat. :mad:

One thing I am finding with Kaiser, is that no, they absolutely do not like their patients going outside "the circle", and another thing,.. they don't like to do much for 'preventative' as far as doing anything before their are symptoms that are causing problems. Like with my oldest,.. that Dr said let's wait a year (even though she NEEDS to be seen NOW),.. wait for what, for her to be ten times worse?? The oncologist for my youngest daughter seems to have a similar approach,... her tumors are growing, there is cause for concern about keeping her vision intact so she doesn't go blind, and also concern about her pituitary gland being breached and putting her into instant puberty at the age of 6/7,.. of course we don't want to start chemotherapy too soon, but his comment about how they don't usually like to treat until there are visibal symptoms,.. such as an actual loss of vision (hello,..that you can't get back!), and about the pituitary,.. "she'll initially be excessively thirsty and start peeing all the time",.. WHAT?? What the?? :eek: I don't want to do anything too early, but darn it, I don't want to wait until something is beginning into the "too late" phase of anything either, you know? Yet, so many of these doctors supposedly come highly rated,... at least within 'the circle', and from other families I know. I suppose I should just stay on my toes and see how it goes,.... perhaps I'll end up looking into other carriers/plans. :rolleyes:

Well, now thanks for letting me vent, LOL! I'm so glad I have you both on my side,.......... It's not easy to keep up a strong front by one's self, which is exactly my position 99% of the time. Alone on everything... and I'm technically not supposed to be (married 14 years in May),.. I can't wait until we can relocate so I can be around people I know again. :(

(((BIG HUGS)))

02-24-2006, 01:00 PM

Happy to help and support you any way I can. The nationwide number for Shriners is 1-800-237-5055. But if you go on their website (www.shrinershq.org) there is a dropdown menu listing all the hospitals around the country - just select the one nearest you and you should see their direct number.

And I know EXACTLY what you mean about not debating with the doctor. Two years ago, when I brought up the stapling procedure to our doctor at that time, I did not know much about Shriners either. So I just let her tell me how the stapling was "experimental" and then I just went home and contacted Shriners myself. She may have had the degree up on the wall, but in my gut I knew I was doing the right thing for my son. And I'm so glad I did not let her intimidate me into thinking that she knew it all and I knew nothing (which, looking back, is I think how she felt).

That's another thing I love about Dr. D'Andrea (our doc at Shriners). She discusses everything with me and really takes my opinions into consideration. After David's surgery, when they thought he might need a transfusion, she and I had a conversation and decided to wait until after the next blood drawing and, sure enough, his levels started coming up and no transfusion was needed. Again, recently, I told her I wasn't thrilled with xrays every 4 months (b/c of the radiation exposure). She thought about it and said "OK we'll do it every 6 months" at least until he hits puberty when we may need to watch it closer. I have found that at Shriners, not only is nobody interested in your money or your insurance - but there are no big egos, everybody works as a team with one goal in mind: what's best for your child.

If you have any questions about applying to Shriners or if I can be of help in any way, just ask. We've all pretty much been where you are right now :)

take care,

02-27-2006, 08:32 PM
I just wanted to comment that when I first was diagnosed with scoliosis at my local hospital, apparently they don't have many patients with scoliosis/spina bifida occulta(minor spina bifida) and started freaking out about it and only took the one xray, no side xray. They sent me away to U of Iowa hospital, where they took two xrays, dismissed my spina bifida occulta as nothing, said my scoliosis wasn't very bad at all, didn't even tell me the exact measurements, and said I had kyphosis, too, but again, didn't tell me anything, and redirected me to the physical therapist, after giving me tips about shoving my shoulders back to help.

When I got to the physical therapist, she gave me a back roll for stability and told me to pull my body up like being on a string, but DON'T push your shoulders back.

The guy I went to was Stuart L. Weinstein, M.D. (http://www.uihealthcare.com/depts/med/orthopaedicsurgery/faculty/weinstein.html)

Save the confusion, go to a shriner's hospital!


The Professor
03-26-2006, 03:01 PM
I'd be tempted to go to her doctor and ask for copies of those x-rays and evaluate them yourself, or (preferably) have them evaluated by another doctor. It's actually pretty simple to calculate a curve by the Cobb method from a frontal plane x-ray of the spinal column if the curve is pretty well isolated on the x-ray (meaning that the full extent of the curve is visible).

By law (at least in most places), those records do belong to you, and you have the right to inspect and/or copy them whenever you see fit. If the x-rays are good enough quality, there's no reason to expose your daughter to more x-rays than absolutely necessary to get a correct diagnosis.

With most MD's, you have to be persistent and educate yourself before you go in. Most have a high enough patient load that they don't have more than 15 to 20 minutes to review charts and records before seeing you, and don't always keep up-to-date on current research and treatment options unless it's something that is his/her direct specialty.

Here's a website that gives a quick illustration of measuring curves by the Cobb method: