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Butterfly_8t8
17th February 2006, 08:33 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?

mark
17th February 2006, 09:20 PM
I have never heard of a combined score i don't know about anyone else. If it was me i would grab my x rays and go look around and get a second or even third opinion.


Sorry i can't be any greater help

Sealy
17th February 2006, 09:57 PM
I have to echo what Mark said ! That has to be the most ludicrous thing I've ever heard !

Butterfly_8t8
18th February 2006, 03:27 AM
Thanks, this is what I'm thinking, too,... is sounded completely idiotic, and I'm pretty ticked off about it. I posted about this on the other scoli board, too, and I got the same reactions,.. NOBODY has ever heard of combining the curves into one score.

Not only that, but the waiting 1 year thing aggravates me, too. There's a teenage girl on the other board that told me that she started out as a 5 degree scoli curve, and by the time she went back 5 months later she was at a 23 degrees.

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. :nut:

Thanks for the support, guys!!

cherylplinder
18th February 2006, 05:51 AM
You are correct! They can not measure the kyphotic curve or the degree of lordiosis unless they do a lateral film! That is the most insane thing I have ever heard of! You were most concerned with her lordiosis! Good grief! Sounds like they did not even do an xray to check that! UGHHHH! (Pulling my hair out for you!!!!!!!!)
:nutter:

Joy
18th February 2006, 05:57 AM
I would really press to see the specialist. It is important to be sure. And ask for lateral x-rays!

Butterfly_8t8
18th February 2006, 07:05 AM
THANK YOU!! I was hoping I wasn't over-reacting, but I am so upset over this. Thank you for validating my concerns!! Here I was so relieved that a Dr was finally taking me seriously that something is wrong with her back, and then, nope, apparently not seriously enough! I feel like I've been duped!

I'm definitely going to pressure him Tuesday for the referral to the specialist. Then, I'll press on the specialist for the lateral films, too. I think after this, I'll request a new pediatrician again... Grrr,... :soapbox:

Thanks again,.. I'll keep you posted!! (((hugs)))

mark
18th February 2006, 09:27 AM
The only i can i can guess for so few x rays is they don't like exposing too much radiation to someone so young. Having said that i agree whole heartdly with Cheryl and joy.

1 Year is a hell of long time to wait for someone with so much gowing left to do. You would expect that they would be monitoring her curves a lot more closely as thing can degenerate quickly.

Sorry to hear things have gone so badly. Just keep pushing them and don't give up. You will find someone who can help i am sure


Take care

mark

titch
18th February 2006, 11:18 AM
It's important that the films be done with your daughter standing - we often hear of people having them done lying down, and that can flatten the curves out somewhat. This is particularly important for a measurement of lordosis or kyphosis, as I'm sure you can imagine they are prone to flatten out more when lying down.

As it happens, I have head of combining the curves into a single measurement, but *only* for combining scoliosis curves. It's usually used (when it is used at all) as part of a procedure to decide whether to offer surgery for borderline curves, as it can help assess the likelihood of further progression in someone who is skeletally mature (ie has stopped growing). If I recall correctly it's something like this: surgery is typically not offered until one scoliosis curve is at least 40 degrees, possibly 50 degrees. However, if there is more than one scoliosis curve, and the combined figure exceeds 100 degrees then even if the largest curve is barely 40 degrees and would otherwise be considered borderline, then surgery may be recommended as the total number of the curves suggests that future progression is more likely.

However, that's pretty irrelevant with your daughter - between her age, the fact that I cannot see how he could possibly have got an accurate measure of the kyphosis and lordosis in a single xray, I really don't think that the treatment is acceptable. Also, you say there were 2 xrays taken - were they both from the same angle? If so, it suggests they don't even have the facility there to do full length standing films, which is not great.

There's definitely no way that this should be left for a year, so you're entirely right to press for the orthopaedic surgeon to see the xrays. However, if he is a general ortho surgeon, I would strongly recommend that you try to find an SRS member for her to see, or ask for recommendations of local docs from the other board - I could recommend you some great adult surgeons, but unfortunately know nothing about children's surgeons in the US beyond that Dr Oheneba Boachie Adjei at the Hospital for Special Surgery in New York is someone you can't go wrong with, and there's a great team at UCSF as well. There are several Shriners too which have a great reputation for treating scoliosis, some of them at the cutting edge (bad term in this context :oops: ) of treatments for it. With the fact that it may be complicated further at any point by NF (if she turns out to have it), it's even more important to have someone who really knows their stuff.

Good luck with it! We're here for you the whole way :squeeze:

Butterfly_8t8
20th February 2006, 08:20 AM
Thanks, you guys! This has been so frustruating,.. first, trying to get someone to even listen to me for the last 3-4 years about her back, and then now,.. finally someone does, and then he gets all wishy-washy on me.

The two films they did were of the same position,.. they were full length,.. and folded in a tri-fold. She was in the standing position (I was with her), and they had her face a panel on the wall. She stood with her feet apart about 6-8" on a stool, and the tech rolled her shoulders forward into the panel on the wall. I asked about doing films from a side view, and he said they didn't usualy bother because they could be read from the back,... Phooey!

Anyway,.. so the x-ray (and I forgot to take my digital camera with me, darn it) showed that she curves (the scoliosis part of it anyway) out to the right, back to center, and then she curves to the left and then back to center,.. so is that two curves or count in the same one for the scoliosis? Then, he measured from the outside of one of the curves to the outside of the other curve,.. again, only for the scoliosis, yet said the 'degrees' was a combined score for all the curves,.. scoliosis, kyphosis and lordosis. I think we're dealing with a complete idiot here,.. sorry, but still upset at him.

He told me he'd give us a referral for a pediatric orthopedic surgeon, and then took it back,.. well, I'm not standing for it. I'll go over his head if he won't cooperate with me. I'm seeing him Tuesday afternoon, and then I'm switching pediatricians, regardless of whether he finally follows through or not. I'll let you all know how it goes.

Thanks again so much for all the support!! (((hugs)))

mark
20th February 2006, 10:10 AM
Good luck, i hope you manage to change drs he sounds like a complete idiot

Butterfly_8t8
20th February 2006, 11:16 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. Scoliosis: WA Edu (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,.. all of this as we've discussed, and all of this I questioned him on. I'm glad we all agree he is an idiot.

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. I also am 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.... you can all do the happy dance with me. :niceone: I did also find out that yes we do have to have a referral to see the pediatric orthopedic surgeon, but I also got 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. Some on the other board are telling me I ought to just skip over the rest and go straight to Shriner's. I think I'll 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.

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.

mark
21st February 2006, 12:53 AM
http://www.scoliosis-support.org/modules/i...&showtopic=2834 (http://www.scoliosis-support.org/modules/ipboard/index.php?s=&showtopic=2834)

heres a link to another good document and website

and another

http://www.scoliosis-support.org/modules/i...&showtopic=2471 (http://www.scoliosis-support.org/modules/ipboard/index.php?s=&showtopic=2471)

and another

http://www.scoliosis-support.org/modules/i...&showtopic=2320 (http://www.scoliosis-support.org/modules/ipboard/index.php?s=&showtopic=2320)

hope its of some help

theres seperate articles on scoliosis, lordosis and kyphosis

mark

Butterfly_8t8
22nd February 2006, 07:40 PM
Well, I went ahead and canceled yesterday's appt. w/ the pediatrician,.. I didn't see any point to going back to him,.. no sense wasting my time on him,.. and then at the same time I 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, 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, Shriner's Hospital wants 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!

Thanks again, everyone for al the support & info,.. and Mark, for the links,.. I printed out that info, too.

sins
23rd February 2006, 12:00 AM
Oh my, I don't know what to say, but I'm so glad you have noticed this now at such an early stage.One good thing to come from this was your focus on the other girl's spines will hopefully have saved them from a progressive scolisois.Shriners sounds great! Good luck with your application and lets us know how they get on there.
I admire your attitude and determination.they're so lucky to have you in their corner.
Sins

mark
23rd February 2006, 01:06 AM
as sinead says what can you say. Lets hope that you get some proper answes from Shriners. my heart goes out to you and all your family. You sound like a determined person and i'm sure you'll do the best by your family. You sound like a really strong lady but you need to think of yourself as well so take a little time out for you every now and again and recharge those batteries.

Take care and god bless

mark

Butterfly_8t8
23rd February 2006, 04:13 AM
Thanks, you guys,.. you have no idea how much having your support means. Sometimes I just feel so alone in trying to handle everything,.. ALL of our family & friends live at least an hour away in every direction, okay, well not everybody,.. my mom & sister live 45 minutes away, LOL, but I rarely see anybody, and rarely talk to anybody,... when I do, it's not always very helpful. I seem to do better in the cyber-world. I only even see my DH on the weekends,.. 3 kids all with medical 'issues' ( I refuse to call them problems as they are a part of my children & my children are definitely not problems ;-) ), I homeschool all of them, plus run all the administrations from my home office, for our business an hour away. I have my own medical 'issues', and because I'm practically a single mom, I have an entire household to run wihtout any help, let alone mixing in all the 'issues',.. I've never been good at asking for help, and I'm always trying so hard to be strong for everybody else that honestly, I don't have time to even think much about "who's being strong for me?",.. although I do hit my low spots and feel terribly lonesome sometimes... or sometimes so stressed that I don't know what I'm going to do. On top of everything, my BIL died a year ago (the day after tomorrow) at the tender age of 28, leaving behind my younger sister and their 5 y/o daughter,.. I do my best to be supportive for them while I also still grieve his loss. My MIL is 4 1/2 years in battling ovarian cancer and things are not looking good,.. I'm closer to her than I am to my own mother, and my girls are all closer to her than my mother, too,.. My DH is an only child,.. I'm trying to figure out how on earth I'm going to keep it together to support him once she passes because I will be equally devestated,... what am I going to do??? These things are just the tip of the iceberg,... I think my batteries are completely corroded by now,.. not much left to recharge,.. I need new ones! :cry:

Oh,.. I'm sorry to unload,.. a lot on my mind, and am anxious for tomorrow morning,.. our genetics testing for all four of us gals for NF, all the while, MIL will be right across the street in the adjacent building with her doctor trying to figure out what chemo options may be left,........... we're meeting up for lunch after.

I know this is all probably way more than you want to know,.. it just feels good to share a little of it. I so appreciate you all being so supportive. All these orthopedic issues are just one more thing to stress over,.. one more thing I can say I can't just 'make better',.... I just want a break,.. give me something that I have control over fixing, please. I do believe everything has a purpose and that our trials make us stronger,.. in fact I'm proof of that, but I still have days where I just don't think I can handle anymore. And while no, perhaps we aren't given more than we can handle,.. why do we have to be pushed to teetering on the edge of emotional destruction,.. and so frequently to boot?

Sorry, everybody,.. I'm just feeling soooo tired tonight. Thanks for the ear... even if most of my wailing was 'off-subject'. I really appreciate all of your compassion & support. I will post tomorrow after we're back. (((BIG HUGS)))

mark
23rd February 2006, 11:55 AM
Hello Butterfly

Don't worry about posting things that are strictly scoliosis related. Thats what these forums are for we all need somewhere to vent out our frustrations.

You have a lot going on in your life at th minute and if coming to these forums and posting releases those pressures then post away.

Good luck with the appointment today i hope they aren't too traumatic. I will be thinking of you and your family.

Butterfly_8t8
24th February 2006, 05:56 AM
Thanks, Mark,..

Well, today 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. Well, finally somebody gives me an explanation for my low back pain 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.

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. :yawn:

Feeling better than I did last night,.. have chinned up a bit, but then again I've been too busy to feel sorry for myself today, LOL.

Have a good night,.. will keep you all posted as we know more, or I need a shoulder. You guys are starting to feel like a new little family,.. thanks.
(((hugs)))

flump
24th February 2006, 09:27 AM
hi there!

I have just been reading your story and am amazed at your solid determination and courage.

You have been absolutely right in pressing for a second opinion. I was diagnosed when i was 13, and my mum was told not to worry and it wouldn't get any worse. As a result I spent alot of my twenties, extremely self conscious, and unaware taht alot of my aches and pains, and other irregularities - breathlessness, mood swings etc could be down to scoliosis.

After the birth of my daughter I started a fitness class, and when my height and weight was measured i found I was now 5' 4", I had always been 5' 6"! obviously alarned I went to see my GP, and he referred me to a cottage hospital in Herne Bay, here I was told not to worry that would monitor it. Nobody seemes to understand how concerned i was re the height loss. Anyhow i moved back to Leicester and started the process again, and on my first appointment I was told surgery would be the option, my curve now being 70 degrees.

I guess what I am trying to say is that my mum did the best by me, and put her trust implicitly with what the doctors told her (this was 20 yrs ago and I wasn't even alowed in the room when they were discussing it!). However, it is all too easy for doctors to fob people off especially when costs are involved, and also I don't always feel doctors understand the full effects of such conditions.

There are some great people out there and the consultant I have been seeing recently is great, he is straight to the point, bluntly honest, but above all human.

keep chomping at the bit, and I'll be thinking about you and your 3 daughters.

All the best

Catherine

cherylplinder
24th February 2006, 11:25 AM
Hugs to you butterfly! YOu and your girls are in my thoughts every day lately. You're doing a great job! Hang in there! We're only human, and you have a tremendous amount to deal with. God bless.
Cheryl

mark
24th February 2006, 03:56 PM
Hi Butterfly

I'm glad you finally got some answers all be it confirmation of your worst fears

Heres another link you may find useful

http://www.srs.org/professionals/resources...white_paper.pdf (http://www.srs.org/professionals/resources/sagittal_plane_white_paper.pdf)

even if the papers of no use have a look around the website is a fantastic resource

http://www.srs.org

Butterfly_8t8
24th February 2006, 07:04 PM
Thanks everyone,... it really helps to have people 'lifting me up'.

You know, flump,.. I was diagnosed when I was about 13 also, and nothing was ever done about it. I have had terrible, terrible back pain my entire life, but no one ever has cared to look into it, except once, and they did one x-ray with me lying on a big table and pressing my back into it. The Dr acted like I was crazy for ever thinking I had scoliosis,.............. Also, I used to be 5' 6 1/2", and about 4 years ago, I realized that I had suddenly lost an entire inch within a year's time. Nobody cared,.. one Dr said maybe I had some collapsed discs, but never bothered to check or do anything beyond that,.. others made cracks about me doing the typical 'shrinking' as I get older (hello,.. I'm only 31 now, and was only 27 y/o at the time.), and again, everyone has brushed me off.

Yesterday, I was told I do have scoliosis, and exaggerated lordosis, and that both my shoulders and hips are uneven. I'm not sure what to even say after that,.. I'm speachless. At least I have an answer for all the pain, but now what??

Thank you, to everybody for all the support,... I don't ever want to sound like I'm playing the 'poor me' card, or trying to pull anyone into a 'pity party' with me, but I do appreciate it soooo much that you all are being so supportive, and willing to listen to me when my heart gets to full of sorrow, and I need to let it out. It means more than you could know,... truth be told, I feel guilty for getting that way because I know there are soooooo many people out there by far worse off than I am, or my family, and so forth, but it's still never easy.

Cheryl,.. thank you. It means a lot to have you in my corner also.

Mark, thanks,.. I printed out the paper, and will go over it as soon as I have a chance,.. I like to highlight key components, too,.. I have a few other papers I've done that with so far as well. I also saved the site to my favorites so as soon as I have a chance I can go over it better, too. You've been so helpful, thank you.

I will definitely keep chomping at the bit,.. and I'm still trying with Shriner's anyway... my new ins doesn't seem to like patients trying to go outside their 'circle',... I'm becoming less enthused that we chose them, and may end up researching other carriers again. And now, yes, to have all my fears confirmed on my children,.. I had really hoped that I wasn't seeing things correctly since I am a new to all this, but no,..

Too much stress,.... oh how I wish we could take a family vacation!! :P Better yet,.. wishing I could move to the UK, LOL! :squeeze:

My love to you all,........ truly, you are my friends.
(((BIG HUGS)))

sins
24th February 2006, 07:10 PM
Hi Butterfly,
Hope you've recovered after your appointment with your girls.Try not to worry, you're now in the process of getting them treated.Hopefully Shriners will accept them, if not, you have good insurance cover and they'll be dealt with elsewhere.
Try and stay strong for the girls. no doubt this will be a bit strange for them all too.If they need some info and support, can I recommend the site spinekids?
I know it must be frustrating waiting and not knowing who and when will treat them, but you'll get there in the end.
Sins

newgirl
9th March 2006, 10:39 AM
HI Butterfly,
Haven't been on in a while and jsut catching up on your story. You have an awful lot to deal with but I am so glad that the ball is finally rolling on getting referrals to the correct specialists. Don't give up too easily on Shriners (I don't think you will) but I know from other boards that persistance does pay off with them.
Hope the weather is nice in Salem, I did go there once and it is a very prestty little town.
Take care
Nicola