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robinlbe
11-25-2011, 10:33 PM
I posted this also in the teenager section, but am posting here in case someone else sees this here and not there.....

Our 14 y.o. son was just diagnosed with scoli last month, and we just saw the spine surgeon for the first time two days ago. He has a 34 degree curve, caused by a congenital hemivertebrae. It is the triangular type, where it didn't separate completely while in utero. Thankfully, he has no pain and no neurological effects from this. His right shoulder, however, is about 4-5 inches higher than his left. I about cried when I saw the xray.

Because the spine is developing at the same time as the kidneys and heart, he will have further tests done on these organs as well. What is most interesting is that at my ultrasound with him at 18 weeks gestation, we were told that one kidney was 1/2 the size of the other, and it was not functioning. However, after much prayer from literally hundreds (if not thousands) of faith-believing people, at the next ultrasound, all appeared normal with the kidney. At birth, our pediatrician felt that his kidneys were normal and nothing further needed to be done.

The spine surgeon we saw is in Louisville, KY at the Leatherman Spine Center. He told us that bracing would do no good at all, and surgery is too risky AND the quickest way to paralyze someone. So we are watching and monitoring his spine. Of course, there is no way to make it better. However, if the curve continues to get worse, we will have to fuse it and stop it in its tracks.

This curve has probably shortened him a little already, hasn't it?
I read that congenital hemivertebraes are 1 in 10,000. Really?!? Have you all found that to be the case?
If you or your child have been diagnosed with congenital, have either of you been diagnosed with kidney and/or heart issues?

Thanks so much in advance for your help, encouragement, advice.....I know I will learn a lot from all of you.

blessings...robin

leahdragonfly
11-26-2011, 11:19 AM
Hi Robin,

I am sorry to hear of your son's diagnosis. I know what a shock it comes as.

I am bothered by the comments made by the surgeon you saw, and I would strongly recommend you find another surgeon who is highly skilled with congenital scoliosis. I am quite sure your son has surgical options that aren't expected to result in paralysis. That comment just comes off so callous.

My daughter's scoliosis is entirely different from your son's, but she had really fantastic care at Shriner's St Louis under Dr Scott Luhmann. I would recommend him to anyone. Also, the spine team at Shriner's Philadelphia is one of the very top pediatric spine centers in the world. I am quite sure they will see your son for a second opinion. You can e-mail Janet Cerrone, the spine team PA, at janetcerrone@comcast.net . She can tell you if your son would benefit from visiting Shriners Philadelphia for a second opinion.

I know it may seem shocking the thought of traveling across country for medical care, however, your son's case is very unusual and many scoli surgeons will not be equipped to treat him. You will not regret traveling to St Louis or Philadelphia for care. We travelled from Oregon to Philadelphia for a consult, then later had my daughter's surgery done in St Louis, and it was well worth the thousands of miles we travelled.

In case you are not familiar, Shriners Hospitals are a network of cutting-edge specialty orthopedic hospitals that is some cases also treat children with burns or spinal cord injuries. They provide all care to children 18 and under free of charge, regardless of ability to pay. Families with insurance will be asked to provide their insurance info and the insurance will be billed, but the family will never see a bill or have any amounts due. It is truly amazing. The only requirement is that the child will benefit from their specialized services. You do not have to have a Shriner sponsor.

I would recommend you e-mail Janet Cerrone, and give her a few days or a week to get back to you. I believe she will be able to advise you about getting the most appropriate second available for you son.

Good luck, and please do let us know how things are going.

Pooka1
11-26-2011, 11:30 AM
I know it may seem shocking the thought of traveling across country for medical care, however, your son's case is very unusual and many scoli surgeons will not be equipped to treat him.

I completely agree with this and all Gayle's other points.

Congenital scoliosis seems exquisitely rare and you want someone who has treated the most cases. It is conceivable some of the top pediatric surgeons have done less cases than certain other guys. The Shriners guys are a good bet for having seen the most cases in my opinion since they are known for orthopedics as a specialty.

And the comment about paralysis seems to indicate that surgeon may not have done so many cases but of course I don't know that. At this point, if a surgeon made that comment to me, I would ask for the data. We have at least one other child (teenage boy with a thoracolumbar curve) with congenital scoliosis on the group who was fused successfully. No paralysis. I can't think of any other case on the group. Given the prevalence, it's amazing to even have that one testimonial.

Good luck.

Pooka1
11-26-2011, 01:02 PM
robinlbe,

By coincidence, Dr. Hey blogged about a very complex congenital case he handled recently. Note how he consulted with other surgeons. I suggest you want a surgeon who will do that also for your son.

http://drlloydhey.blogspot.com/2011/11/12-yo-girl-with-severe-75-degree.html


Last week we straightened up Emory, who is 12 who had complex congenital scoliosis measuring about degrees at Wakemed. Due to complexity of her deformity, I did extensive preop planning, including 3 dimenensional analysis of her cervical and thoracic spine using special software. I actually presented her case at Boston Childrenís Hospital special Fellow Reunion Conference right before the Grice Dinner and Lectures. Many thanks to Dr. John Emans, and others who helped give their input!

Intra-operative O-Arm Navigation and 3D analysis was also performed. I took the preop 3D analysis I did for each pedicle level, and actually arranged them into a PowerPoint presentation which I then printed and posted on the wall in the operating room! That was very helpful. Surgery was T1-T12 instrumentation performed along with several osteotomies. WakeMed OR team did great.

Her surgery went well, with 3 night stay at WakeMed Raleigh Childrenís Hospital, going home on Saturday doing well.
This surgery helped with her severe shoulder obliquity caused by the severe scoliosis.

robinlbe
11-26-2011, 09:37 PM
I knew I had come to the right place!!
Ladies (I'm assuming, ladies, anyway...you sound like VERY informed moms to me!!!!), thank you for taking so much time to "talk" to me and give me so much advice and encouragement. I had been reading through the forums for a couple of weeks before our doctor visit, and before I had been given permission to post, so I had read about the Shriners' hospitals and all they could do. We live only about four hours or so from St. Louis, so that's not terrible.

I do think I'd like a second opinion. Even though my son's scoli isn't terribly noticeable (because he is so active, and he doesn't wear tight shirts), I am so scared it's going to get worse. I guess I was just relieved the spine doc wasn't knife-happy. My son is in ROTC, and is running his mile, doing his push-ups, pull-ups, sit-ups, etc....he's always been my active child - riding his bike w/o training wheels at age 4, doing cartwheels, flips, etc, my skateboarder, my true dare devil!!! He is not supposed to stop doing all of this. I want him straight, of course - but I'm so scared that surgery will cause him to stop doing this stuff.

AND to be honest, bone surgeries of any kind scare the daylights out of me- in the last two years, I have watched my mom have a back surgery and a hip-replacement surgery to get WORSE in her condition!!!!! Of course, I know this is not the same thing.....I know. But it scares me something awful. I would be willing to take a chance on myself - because I'm old. But I'm scared of doing so with my 14 y.o.

Does that make sense?

And yet, I know that YOU each have gone through this very thing........I know.
I honestly did not know we were getting into something so serious.
I actually was hoping my chiropractor would be able to help, but when she saw the written report about his xrays, and she saw the "hemivertebrae" on there, she wouldn't touch him. It wasn't until we saw the xrays ourselves this week that we realized what we were dealing with.

Yes, I do think you all are right. We need to get the data of how many wedged hemi's this doctor has dealt with. We also need a 2nd opinion.
At this point, my son has the rest of his life - hopefully another 70+ years to go.

Thanks again for everything you've shared....
blessings...
robin

titaniumed
11-27-2011, 12:24 AM
Hi Robin

We do have quite a few knowledgeable momís here! What would we do without them? (smiley face)

I will ditto Gayleís post (again)....You son is not a standard or common type of scoliosis and needs to be seen by some of the experts....Experts like those at USCF, HSS,TCSC, or any other institution that deals with hemiís or oddball vertebral shapes. Shriners also deserves HIGH marks. These types of hospitals have the best of the best brainstorm and discuss cases like this. Its nice to know that many guruís will be looking at your sons x-rays.....

Iím so sorry about this. If he were my son, I wouldnít dwell on this at all. I donít think that they will make a quick surgical decision, but will probably want to watch him like a hawk for now. His hemi is up high.

If he has any x-rays taken, get digital copies burned to disc for your records. This goes for CTís and MRIís also. They are your property.

Welcome to the forum.
Ed

rohrer01
11-27-2011, 12:58 AM
I could be wrong, but I think "fierceliketiger", who is now in her 20's also had a hemivertebra. If I remember correctly, she had hers removed, although I don't think it was really high up. Her problem was broken rods and she's been referred to a different doctor in a different state. You might benefit from looking her up and reading through her posts or private messaging her and ask if that was the case and how the initial surgery went as far as removal of the vertebra. But again, I could have misunderstood.

titaniumed
11-27-2011, 03:54 AM
Rohrer

You have a good memory. Her hemi was at L4.

She was revised at Twin, said she was doing ok a month later, and stopped posting. I dont think she is online or she would post.

Maybe she will surprise us and say hi. I hope she is doing ok.
Ed

robinlbe
11-27-2011, 05:32 PM
I've shared this info. with my husband....and about the Shriners hospitals with my son.
I do think we will get the 2nd opinion.

We need to get the xrays on our own disk/flashdrive or something. Right now, they're at the hospital.
We'd like to avoid surgery, if at all possible. As long as our son is not in pain, and the curve is not causing him problems...and is not progressing. Of course, we won't know *that* until the next visit (in February) with the next round of xrays.

I feel like being an ostrich right now, quite frankly!

In the last two years, we have dealt with my own breast cancer, my mom's two surgeries (with her contracting MRSA and nearly dying with the first), my daughter passing out and ending up with severe concussions twice, two high school graduations (and kids going off to college), and my teaching jobs being reassigned three years in a row......I've had quite enough, thank you very much... :rolleyes:

Oh, and not to mention I turned my ankle - which ended up as three fractures there, and a total of three casts!!! And then just three months ago, I tore the tendon in my right ring finger (which doesn't sound like a biggie, except that I was in a splint for eight weeks 24/7, and then it took another month to get out of it altogether!!)
.....yes!!! All of those things since November, 2009..... yippee....Life is a roller coaster, if nothing else!

Did I mention "stress" was my middle name right now??? ha!
anyway....thank you for being here for me in this newest test and trial in my faith.
God is faithful and He will carry us through this, too....
I'm just holding on for this ride, too....

blessings...
robin

Pooka1
11-27-2011, 05:40 PM
In the last two years, we have dealt with my own breast cancer, my mom's two surgeries (with her contracting MRSA and nearly dying with the first), my daughter passing out and ending up with severe concussions twice, two high school graduations (and kids going off to college), and my teaching jobs being reassigned three years in a row......I've had quite enough, thank you very much... :rolleyes:

Oh, and not to mention I turned my ankle - which ended up as three fractures there, and a total of three casts!!! And then just three months ago, I tore the tendon in my right ring finger (which doesn't sound like a biggie, except that I was in a splint for eight weeks 24/7, and then it took another month to get out of it altogether!!)
.....yes!!! All of those things since November, 2009..... yippee....Life is a roller coaster, if nothing else!

Okay enough "fun" for you. Get off the train and let someone else on. :-)

That is quite the list! I think life has been very unfair to your family.

Mustang
11-27-2011, 08:02 PM
Hi there,

I've only ever lurked on this forum, but this thread caught my eye so I had to respond.

I'm 30 years old and from the UK, and was born with Spinal Dysraphism (Spina Bifida) and Diastematomyelia (split cord malformation, with a bone spur through the cord, causing tethering) with bony malformations of my lumbar spine. No one is absolutely sure how many lumbar verts I have, because they are so hard to identify, but it was assumed that my hemivertebra was at L3. This was a strange-shaped vert, but the wedge was mostly posterior, causing lumbar kyphosis. meThis was identified at birth, but as my scoliosis was mild then, they decided to monitor me regularly to see how things would pan out. I had neurosurgery on my spinal cord when I was 3 years old, to remove the bony spur and release the tethering (initially successful, but the spur grew back), but the hemivertebra was left alone.

Things were fine with my back for most of my childhood - my curves were at 40 degrees when I was 15, so not too bad. However, just a few months after that last xray in 1997, I developed severe pain in my lower back, right buttock and leg and right leg spasticity quite suddenly. I was admitted to hospital on two occasions to have a series of scans and tests in order to find out what was wrong. After a CT myelogram, they discovered that the hemivertebra was actually compressing my spinal cord and nerve roots. My surgeons (ortho and neuro) discussed what could be done for me surgically, and eventually decided on decompression and fusion L2-L4. They warned me it was a risky surgery, and I wouldn't come out of it with any correction because they can't stretch someone with a tethered cord as the risks of paralysis are too high. But, if I didn't have the surgery, I was looking at progressive paralysis anyway, so that combined with the pain I was living in made me choose to have the surgery. So, aged 17 I underwent a 14 hour operation, during which they carefully excised the hemivertebra posteriorly (they had discussed doing it anterior and posterior in a two stage procedure, but once they'd opened me up they decided to do it all in one sitting) using the Wiltse approach (an incision either side of the midline), packed the spine with bone graft then used pedicle screws for stability.

I won't lie, my recovery was pretty rough. I had a lot of post op pain, nerve irritation and a contracture of my left hip (caused by the length of time in traction on the operating table). While the operation thankfully didn't paralyse me, I did come out of it with nerve root motor damage in my right leg, meaning my foot has no voluntary function and some of the major muscles are permanently damaged. The spasticity also worsened, but was not as painful as before the op. I couldn't walk because of this, and it took months of tough physio to get me up and walking with sticks. However, the operation was successful in that it sorted out my back pain, and I considered losing some function as a fair 'trade off', and I don't regret having the surgery for one second. Do remember that I have spinal cord damage from birth though, so my experience isn't necessarily the norm!

Anyway, I just wanted to tell my story to show that they can and do remove hemivertebrae in older children and adults. While it is undoubtedly a complex surgery, certainly more so than a standard fusion/correction of idiopathic scoliosis, it's by no means a given that you'll end up paralysed, especially if there's no underlying cord involvement. I would advise you to get a second opinion from another surgeon for your son rather than just going by what one surgeon has said - surgeons can and do disagree frequently, but the important thing is that you feel confidence in the surgeon's abilities.

robinlbe
11-28-2011, 09:11 PM
Mustang, Thanks for sharing your experiences!
I feel I have NOTHING to complain about after all you've been through....I realize that was not the purpose of your posting, but it did give me a great perspective AND it helped me to know that we might have other options.

I don't know if removing Samuel's hemivertebrae would be helpful to him or not.....how would one decide? It's not impeding his spinal cord, apparently.
It's just jacking up his spine at an incline, causing the scoli. As he's growing, it's getting worse (I'm guessing). He's 5'7" now, and probably has another 5-6" to go, as I am 5'11" and my husband is 6'1". My oldest son (age 20) is 6'3", and my daugher (who was my 23.5 weeker preemier, who weighed one pound, four ounces at birth) is 5'6". So we're on the taller side :)

So if the hemivert. is removed, would that just keep the curve from getting worse?

I'm glad to hear of the successful hemi removals.
That is helpful.

Beyond that, we are checking out the other things that go along with same-time development as the vertebrae separation - the kidneys and heart. Our doctor was able to get appointments for Thursday - which is in three days. Once we get those results, then I'll check further into the Shriners and see if they'd be willing to see our son.

Thank you, again, for all of your advice, encouragement, sharing, and more!!
Blessings...robin

Mustang
11-30-2011, 10:27 AM
Hi Robin,

I'm glad you found my post helpful, i'd hoped that you'd be able to glean something from it in order to help you with your own quest to get your son sorted :)

I forgot to mention that that luckily I don't have any issues with my heart and my kidneys were fine as a child. I did develop some dilatation of the collecting tubes within the kidneys as I got older, but that was because I have a neurogenic bladder and suffered with severe bladder spasms as well as not voiding properly for many years, but i'm happy to say that i've managed to reverse this damage by self-catheterising. I hope the tests show that your son's heart and kidneys are in tip top shape :)

Has your son had an MRI scan yet? If he hasn't I imagine he'll have one soon enough. It's encouraging that he doesn't have any signs of neurological involvement, but the MRI will conclusively show whether or not there's any underlying spinal cord lesion or tethering.

I'm surprised at the extent of his shoulder obliquity (4-5" difference) if the curve really is only 34 degrees - if you've got any photos or xrays i'd love to see them (don't worry if you'd rather not, i'm just always interested in seeing these things). I guess it's because of how high up the hemi is - I believe high thoracic hemeverts are much less common than lumbar. Anyway, I think the fact that the curve is not yet in surgical territory (at least 40-50 degrees), he has't finished growing and there aren't any other indications for surgery (neurological compression, pain or threat to other organs like heart and lungs) means that surgeons would be unlikely to offer surgery just yet. I've read that hemivert excision anywhere above the level of the conus medullaris (tip of the cord, usually lying at around L1) carries a higher risk of neurological damage. Even though my hemivert was L3, my cord is tethered at L5-S1, so actually I think the risks of damage for me were about the same as for a thoracic excision. Anyway, so personally I think the watching and waiting approach is probably best right now. Presumably he's being xrayed and the curve measured every 3-6 months?

Oh, just one more thing - other articles i've read suggests that fusion/correction of a curve caused by hemivertebra is said to be more successful (i.e better correction) if the hemivertebra is excised first, rather than fusing around it (which also increases the rate of pseudarthrosis).

Glad you're going for the second opinion! I'm in the UK so can't comment on any doctors in the US, but there's enough US-based people here to know more about that. I hope you get on ok with it :)

Mustang
11-30-2011, 10:50 AM
Oh, and here's a couple of pics of my spine, xray and CT, in case you're interested :)

http://i390.photobucket.com/albums/oo343/sallyzippy/image-1.jpg

http://i390.photobucket.com/albums/oo343/sallyzippy/image9.jpg

rohrer01
11-30-2011, 11:09 AM
Wow, Mustang. Being born with all those problems and seeing your spine, especially the side view, I'm surprised that you were ever able to walk. I have a friend who was born with a meningiocele (sp?) spina bifida and he's never been able to walk. Thankfully he wasn't mentally impaired as that sometimes goes along with it. It's quite obvious that you are not mentally impaired, also. Don't take this the wrong way, please. You are one really fortunate lady that you can walk and are not mentally impaired. Me and my son both have spina bifida occulta. His is worse than mine. Neither one of us have any side effects from it what-so-ever. It was just a finding when we had x-rays for other reasons. Even though all of us on the forum either have scoliosis or have a loved one with it, I think we all have things to be thankful for. Thank you for sharing.

Mustang
11-30-2011, 10:05 PM
Oh I agree, I do have a lot to be thankful for. I was extremely lucky that I received such good care from birth - i've had wonderful specialists who kept a close eye on me and stepped in to operate when necessary. I'm also lucky that while my particular condition is quite unusual and complex, it's not as severe as it could have been. I've always had problems with walking, but I did manage it (mostly with the help of walking aids). Other than that I had a normal happy childhood, did well at school and have worked all my adult life. I come from a close family, and drew a lot of my strength and can-do attitude from my mother. She'd just turned 20 when she had me, her first child, in the days before routine ultrasound scans so she had no idea there was anything wrong with me until I was born. But, rather than falling apart at hearing that I might not be able to walk, might not develop normally and all these other scary unknowns, she refused to believe that i'd be anything other than ok and was just so strong and focused - and still is - and I owe so much to her.

Unfortunately i'm not doing so good right now and am back in the wheelchair - my chronic back and leg pain got so bad that a year ago I was hospitalised to get the pain under better control. Walking is just too painful and my legs have weakened further. I will shortly be undergoing another surgery - a 2 stage anterior/posterior spinal fusion T10-pelvis. Once again I can't be straightened so my curves will be fused as they are. The aim of surgery is to immobilise my spine and improve my sagittal balance (i'm rather crunched up in the body) in the hope that it will improve my pain levels - there are no guarantees, but i'm giving surgery a shot because it's the last resort and a chance to get off morphine and all the other meds I have to take and will hopefully be able to go back to work.

According to statistics, mild SB Occulta is thought to affect as much as 20% of the general population, but most people with it don't have any underlying spinal cord or neurological problems and so don't even know they have it until it's incidentally spotted during an xray for something completely unrelated, as was the case with you and your son.

I just need to say something about Spina Bifida though. It's a very variable disability and no two cases are the same. Myelomeningocele (open) SB is the most severe form, but even some people with myelo manage to walk - a lot of it is dependent on what level the lesion is at. It's a common misconception that babies born with SB will have some form of mental impairment - sadly, this is what parents-to-be are often told by obstetricians (who don't specialise in neural tube disorders - that's the domainf of neurosurgeons) when the SB is picked up on scans, which obviously causes a lot of distress. In fact, the vast majority of people with SB have average or above average intelligence - SB itself has no impact on brain development. Hydrocephalus often accompanies SB myelo, which if left untreated can cause brain damage, but as long as a shunt is fitted to drain the excess CSF very early in life, the brain can develop normally. I know several people with SB myelo (as well as the other types) and all of them did well at school and university and have jobs, living their lives like everyone else. Also, a lot of emphasis is placed on not being able to walk - some people who've never had a mobility impairment tend to think that walking is the be-all and end-all, and that people who've never been able to walk must be bitter and depressed about it and feel like they've somehow missed out on life. In many cases this just isn't true, and it comes down to the simple fact that you don't miss what you never had!

Sorry for another long reply, and for drifting off topic somewhat, but I just felt I had to say a few things about SB :)

robinlbe
11-30-2011, 11:27 PM
I'm actually GLAD you gave me an education on spina bifada (I think I just spelled that wrong...sorry!!).
One of my favorite students is SB, and he is one of the sweetest, happiest young men I've had the pleasure of knowing and teaching. I had him fo ra general music class when he was in 7th and 8th grade, and now he's a high school junior. I just recently saw him and he's grown up so much. Even though he's in a wheelchair and unable to walk at all, he has always been the manager of the schools' basketball and football teams.
He talks slowly, and thinks slowly; his fine motor skills are poor - but I do believe he is of average intelligence. I just love him!!!!!

And for Ed, I think, who was wanting to see pictures of my son - I'll see what I have to show you. I KNOW he wouldn't just *let* me take a picture of him showing his "unevenness", although I probably should, just for the sake of comparison for later.

We're heading back to the hospital tomorrow for his kidney ultrasound, and that happens to be the same place where he had his first set of xrays, so we'll get our own copy of the xrays. Maybe I can post that somehow.
We also see the pediatric cardiologist tomorrow as well.

I am going to contact the Shriners folks, too......I want to get them in on this from the get-go....IF they feel they can be a part of this.

Again, I thank ALL of you for everything. Will update tomorrow night...hopefully with NOTHING eventful :)

blessings...robin

Pooka1
12-01-2011, 06:07 PM
... in case you hadn't found this site...


The treatment plan is based on the the progression of the spinal curvature. The chances of progression of the curve (in all congenital scoliosis cases):
50% > 30 degrees
25% (5-30 degrees)
25% are non-progressive.

http://www.espine.com/congenital-scoliosis.htm

robinlbe
12-04-2011, 08:55 PM
First off, thanks Pooka - for taking time to share the link for the website with the info about congenital scoli. Samuel is already in the 50% group, having his curve in the 30+ range. I'll do some more digging, too. I know what I'll be doing over my Christmas break!!!

We had his kidney/bladder ultrasound on Thursday, and all is well!!!!! We also had the appt. with the pediatric cardiologist who specializes in congential heart problems, where they ran an EKG and an echogram/ultrasound, and all is well!!!!! Praise God !!!!! So, my gut feeling was wrong....thank goodness! We were all so relieved that the birth defect is limited to "just" his spine. So, now we're back to our original issue(s)....the spine and something else non-related (varicocele - I think I spelled that wrong). Poor fella.

Anyway, I talked at length with our doctor about the Shriners Hospital, and he said to go ahead and get going on that.

I have a disk now that has the xray images of Samuel's spine....I just don't know how to get them from there onto here for you to see.

Thanks, again, for everything....as I find out more, I'll keep posting..
blessings..
robin

Mustang
12-07-2011, 10:58 AM
Hi Robin,
So glad to hear everything is fine from a cardiology and urology perspective, that's certainly one weight off your mind i'm sure! :)

If you want to post pictures here, the best way is to first upload them to a photo hosting site such as flikr or photobucket, then copy the image link in your post. I look forward to seeing them :)

robinlbe
12-11-2011, 04:44 PM
The CD on which we have the xrays won't download (upload??) to anything...or at least that I can figure out....
but I accidentally found out that it would copy/paste....
so I'm going to try it here....here's crossing my fingers it's going to work....

ok. it didn't.....even though it is saved to my word.

going to try something different..

sigh...still didn't work.
I am able to send it as an attachement...



well, it won't load.....the uploader on here says my attachment is an invalid file, but yet, when I attach the document and sent it to myself, it opens up just fine......oh figures.

I would be happy to email it to you personally.......if you want to send me a private message (are there private messages on this forum???) I'm on a breast cancer forum board, and we have one on there.....just wondered if there's one here. I have a feeling trying to send an attachment to anything on the scoli forum just isn't going to work :(

but I'd love to have you and others take a gander at his spine...

blessings.....
robin

Pooka1
12-11-2011, 05:15 PM
What format are the files? If they are not relatively small .jpg files then you may need to run them through a program that allows you to save them as such.

Once they are in .jpg format, can you copy/paste the files from the CD to your computer? Highlight one or more files and copy/paste them into a folder or to the desktop, somewhere that you know where they are.

Then select the paperclip icon and follow the directions.

robinlbe
12-11-2011, 10:16 PM
Thanks, Pooka...
the files on the CD were something I'd never encountered before, naturally....
but my son started messing with the computer, and with a matter of some clicks here and some clicks there, I think we have it !!!!

So, here goes.

1146

robinlbe
12-11-2011, 10:18 PM
...if you're able to see the xray or not...
again, my son had to do it for me....just couldn't quite figure out how to get it on here.
I know how to post pictures on FB, send attachments on everything else, but this was just SO different from anything else...

blessings to all of you...
robin

Elisa
12-11-2011, 10:51 PM
Yes, I can see the x-ray you posted, sorry that I don't know anything about congenital scoliosis though.

titaniumed
12-12-2011, 01:57 AM
Sally
Be sure to let us know when your A/P is coming up.....youíre a trooper! Hang in there.

Robin
Once again, I donít think they will move quickly on this and will watch and wait. Sally is correct, hemiís up high are rare, I remember reading about this at some stage....

A follow up with Shriners would be wise.

I am having trouble following the forum lately since I have been busy, but do quick glances in here often.

Ed

Pooka1
12-12-2011, 07:03 PM
Thanks, Pooka...
the files on the CD were something I'd never encountered before, naturally....
but my son started messing with the computer, and with a matter of some clicks here and some clicks there, I think we have it !!!!

So, here goes.

1146

That's a clear radiograph. The curve seems really limited to the area immediately at the hemivertebrate. Maybe it won't progress. I actually don't understand why congenital cases ever progress. It just seems locked and self-limiting unlike AIS where the sky is really the limit.

I wish there was a database so you could easily look up who has seen the most congenital cases. I would not be surprised if it was a Shriners guy. It would just be very good to have that because these cases are so rare.

congenitalscoli
12-14-2011, 08:02 PM
Hi,
I also found it hard to find information on congenital scoliosis but this forum has been very helpful to me as it became apparent my daughter would need surgery. She was diagnosed at age 11 with surgery at age 13- she just reached the one year mark! Her hemivertebrae was at T7 with a primary curve of approximately T38 and a compensating curve of L25 at diagnosis. Her mri was normal and she had a kidney ultrasound for another reason when she was younger. She did hold steady at first then jumped to T51 L38 at 12 1/2 years old. We were seeing both a Shriners doctor and a local doctor both recommended surgery for her when her curves progressed. The surgeon did brace her but wanted to wait for her to have her period before he did surgery and thankfully the curves pretty much stayed the same until her surgery 9 months later. She was fused T4 to L3 with a slight correction in the thoracic but the lumbar curve is completely gone! Faith and Prayers got her through it. We chose a surgeon here in town so she would be closer to home but I would have been just as happy with the Shriners which was 2 hours away for us. The main difference was the appointment scheduling- Shriners made 6 month appointments for both my kids while the local doctor made 4 month appointments. We were even able to share the xrays/mri's between the doctors because on 1 or 2 occasions the appointments were near the same time.

I also think back- during my pregnancy the blood test at 16 weeks was out of range. The ultrasound was normal but indicated a change in the due date. She almost skipped crawling completely by rolling around to move around and suddenly discovered crawling at 12 months old. Her pediatrician sent her to an orthopaedist at 15 months because she was just beginning to walk- they xrayed her hips and said she was fine.

Hopefully your son's curves will hold steady and he will be able to avoid surgery. Every case is different but it can be done on congenital. My daughter is glad she had the surgery. The Shriners are a wonderful group and hopefully you will be able to see them soon.

Pooka1
12-14-2011, 08:16 PM
She was diagnosed at age 11 with surgery at age 13- she just reached the one year mark!

Congratulations!

rohrer01
12-14-2011, 08:40 PM
Robin,
Your son's curve is very high and tight. It almost looks like how mine started out, only I don't have a hemivertebrae, I have AIS. I know they are unrelated, so I don't know how fast hemi's progress. But mine was very stable for about 20 years. Now that I'm in my 40's, it's progressing at a fairly steady rate, which is discouraging to me. I have other plans that were in the works that don't have room for progressive scoliosis or the pain that comes along with it. Oh, how I wish we had a little more control over our lives! But it's GREAT news that the other test came back normal for your son! I wish you all the best. I don't remember reading this, but does your son have pain with his back? How did you find the curve? Sorry if you already posted it.

Mustang,
Wow, what an education about SB. There were a LOT of things there that I didn't know. I know my mom freaked out when she found out that I had it and I was put through a lot of neurologic tests, mostly for the scoliosis and an associated radiculopathy that I still have. But her freaking out made me very scared about it. Even when I started having babies, my doc was very meticulous about checking everything as he was a little concerned about my SB for the thought that it might be hereditary. I'm not sure. I've lost a lot of babies. I was able to see one, and now that I know what a 7 week embryo should look like, I'm certain that baby had anacephaly. It makes me wonder about the others (at least 6)? I had a cousin that was born with hydrocephalis. Sadly, she died three days after she was born. She also had a blocked intestine. Back then, in the early 60's, they didn't have the technology that they do today, as she would probably be as normal as anyone else, had she been born now instead of then.

robinlbe
12-14-2011, 09:04 PM
Thank you, everyone, for all of your comments, encouragement, advice, experiences, and more.....I know how blessed we are in our situation.

Our son has no pain whatsoever with his scoli. Some time ago, I had noticed that one of his shoulders always seemed so "hard" and I assumed he had a trigger point, or tightened muscles. I would try rubbing it out for him, but he wouldn't like it, so I'd stop. I noticed, too, that one shoulder was a little higher than the other, but never paid too much attention to it. I NEVER see him without his shirt, and he NEVER sits still.....so I never saw just how MUCH higher the one shoulder was than the other.

This fall he started in ROTC and needed a complete physical. During that exam, his doctor found two areas of concern - one being the raised heighth of the one shoulder. He was sent in for xrays - had those on 10/25/11 - and you know "the rest of the story"......

I DO feel we need to go to Shriners - just to get that second opinion....My question for those of you who have been dealing with this far longer than I, is this - do we wait until the next set of xrays in February and see what's going on???? Or should I go ahead and get going on making appointments with Shriners ASAP? I'm assuming there will be a wait.

Oh, and by the way - the hardness I was feeling in Samuel's shoulder .......that is his ribcage!!!

sigh....

thanks again....
blessings...robin

rohrer01
12-14-2011, 09:55 PM
Oh, and by the way - the hardness I was feeling in Samuel's shoulder .......that is his ribcage!!!

sigh....

thanks again....
blessings...robin

That explains why he didn't like you trying to rub it out!
I had a very elevated shoulder as well (the shoulder is dropping as my other curve is progressing) and my shoulder is very hard. I do have trigger points there, but the mass is so hard that the doctor can't break it up. My top curve is from T-1 to T-6. I don't know where it used to end. I think it was tighter when I was younger, but it is a larger curve now. I wish I had the answers to your other questions. My mom had the offer to take me to Shriner's when I was a kid, but she said no and took me to a clinic in Phoenix. So I don't have any experience with Shriner's or congenital scoliosis.

congenitalscoli
12-15-2011, 11:10 PM
Robin,
I would begin the process for Shriners if you are considering changing to them. If I remember correctly, we applied in September which gave us appointments in February. It was just a few hours away for us which we could easily do in a day so distance is something to consider.

robinlbe
12-24-2011, 11:05 PM
It probably doesn't matter much, but I just reread the report.....my son's hemi is in the T3-T4 (I originally thought it was T4-T5)
Merry Christmas, everyone!!

Mustang
12-27-2011, 07:51 AM
Hi Robin,

Thanks for posting that xray, very interesting! I can see why his shoulders are so uneven - that's a really high curve, and has the characteristic sharp angle you see with scoliosis caused by hemivertebra. I also have one shoulder higher than the other, though not as much as your son's, and have the 'hard shoulder' feeling - didn't know it was my ribcage until I saw an xray either! My muscles on that side are quite tight, and I do get a lot strain and neck pain, which I think is because my neck is at a slight angle - here's an xray to show you what I mean http://i390.photobucket.com/albums/oo343/sallyzippy/6.jpg

Pooka, some types of congenital scoli are extremely progressive. The problem with things like hemivertebra is that the malformed side doesn't have any growth plates, so the formed side grows as normal while the other side has no growth potential at all. It's for this reason that bracing doesn't work for congenital scoliosis. Different types of congenital malformations have different prognoses - this website explains it all better than I can! http://www.rcsed.ac.uk/journal/vol47_2/4720004.html

robinlbe
12-28-2011, 03:29 PM
What a great article, Mustang. Thanks! My heart just broke when I saw the picture of that young girl...I realized that my son has nothing to worry about compared to her. I just hope the worst is behind him....and it all happened before we even knew about it.

Thanks for sending through the xray of you, Mustang.

blessings....robin

robinlbe
01-06-2012, 05:17 PM
Based upon your advice on this forum, I *did* send an email to Janet.....sent her a copy of the xray that I posted on here, as well as the information about Samuel. Asked her if we should consider a second opinion from the specialists at St. Louis or Philadelphia.

Well, I just heard from her today.....and YES! She feels that Samuel VERY much needs a second opinion, and from Dr. Betz!!!!
So, I am in the process of filling out the form, and will fax it to them.
and then see what happens.

I am SO, SO, SO grateful to all of you and your advice, your experiences (although I wish you hadn't had to go through all of it), and for your willingness to share.

(hopefully you'll never, ever need it....but I am on another forum very simliar for breast cancer....two years ago today, I had my major surgery - bilateral mastecomy - so I have been cancer free for two years!!! And I received so much advice, help, encouragement and more from that forum!!!)

Anyway, couldn't wait to let you all know that we will be Philly-bound at some point....
Thanks again.

blessings...robin

heatherf
02-26-2012, 10:31 PM
I think all have had great input as for what you could possibly do next. I know you have so much to deal with! I just wanted to say that I am 29 and was born with congenital scoliosis. I believe someone spoke of it being more serious in infants, and that was more the case with me. I was born with the congenital scoliosis due to a hemivertabrae (which was only recently truly explained to me - for a very long time I didn't understand many of the technicalities and still don't on some of them), and I was also born with tetralogy of fallot. It's a major heart defect which includes a hole in the heart and a poorly functioning valve, to make a long story short. So when you ask if there can be other problems (kidneys, lungs), I have heard that as well and it was the case with me. However, they knew of both problems as soon as I was born. They didn't just pop up after some time. The heart problems were just more pressing and pushed the back problems aside under they had it under control and did some repairs (ages 1, 3, and 5). The back wasn't addressed until I was 7 when rods were put in, and then two years later at 9 when additional fusion was done. I do experience quite a deal of pain now; however, I don't believe that's necessarily the case for everyone, especially your son. He sounds quite active, and all I could really say is continue to encourage this and anything that will help him stay more flexible. I now have problems with herniated discs and more, but my scoli dr has pretty much told me a lot of my pain will not go away because it's residual from my fusion surgeries. But he did point out that if they were to do it all over again, they would remove that hemivertabrae like you're talking about instead of putting the rods in that they did. It was the rods and the other parts of the fusion that is more what I'm dealing with now. However, I can't complain because that was the best option back in the 80s, I guess :-) For now we'll deal with the occasional injection and as much exercise as possible and try to find those who are now dealing with congenital scoli into adulthood. I do struggle at times with accepting that it's affecting my life in this way, but I know mine was a severe case. And I do have a wonderful life, and your son will also. My parents were my best advocates and got me the best care around (KUMed), and I am now a teacher, wife, and proud mother of two very active, healthy children.

So hang in there to you and your family. Take care!

robinlbe
03-10-2012, 09:30 PM
HeatherD, Thanks so much for sharing from your personal experience. I am so sorry you have gone through so much. At only29 years of age, and with so much pain and herniated disks, that's just too much :(

Samuel had his second check up with the Louisville spinal surgeon a few weeks ago. The xray showed NO progression from three months ago!!!!! Lots of prayer have been going up for him, so I feel this was indeed an answer.

He is experiencing pain in the front of his right lung (the side where it's contorted, and his rib is up at his shoulder) during running. His pediatrician is sending him to a pulmonary specialist just to make sure there's no impingment ro anything. The spinal doctor, cockily stated that there was no way his scoliosis could be affecting his lungs, but we would rather be safe than sorry.

This last visit I didn't care for the way the doctor treated us. I had a lot of questions. I would ask a question, and then the doctor would basically laugh it off. He would turn to my son and ask him if HE had a question, and of course my son didn't. Then I would tell him that I had *another* question. I would ask it, and he would pretty much laugh it off. I'm really rather frustrated with this.

We DO, however, see Dr. Betz, HIMSELF on June 5th. Dr. Betz, when he saw Samuel's xray, asked to be the doctor to see and examine Samuel. It turns out that apparently he, too, has a very similar congenital hemi in nearly the same spot.

Anyway, so that's our update. Not much of one, I realize.....
Hope all are doing well....think of all of you often.

blessings...robin

robinlbe
05-27-2012, 03:42 PM
.....is just in a few days....

Samuel is still doing well, although he has had more pain lately. However, those days were the ones where he had to stand excessively.
I've really noticed lately that in the mornings and evenings, his right shoulder is considerably higher. I'm attributing it to him being tired, and not adjusting for his posture. I just hope the curve hasn't progressed more.

Guess we'll know more in a few days.

I'm a little anxious, nervous, and excited to meet Dr. Betz and have him examine Samuel.

Our pediatrician is afraid that this hemi and the resulting curve is affecting our son's heighth growth....it makes sense, I would think.....
thoughts???

I'll update everyone when we return from Philly.

blessings...robin

mabeckoff
05-27-2012, 04:17 PM
Hope all goes well

God Bless

AndiS
06-07-2012, 03:43 AM
i've just read up and i hope all went well! i'm interested to see what dr. betz thought.

robinlbe
07-20-2012, 10:17 AM
Not sure anyone will see this.....but after our visit with Dr. Betz in June, we had the MRI done a few weeks ago. Just found out yesterday there is a syrinx.

Now, first of all, please realize, I KNOW how very blessed we are that Samuel has ONLY one hemi and ONLY one syrinx.....after reading on this forum, on the yahoo page, being on the Facebook group, I have seen how much some of you have gone through with your kiddos. I have learned so much from all of you and your experiences, and I do realize that our situation is not nearly as severe. Nevertheless, we are still having to be seen by doctors, still having to consider surgery, make decisions, etc. sigh.....

and I am looking to you all and your wealth of knowledge.....

At Dr. Betz's visit, Samuel's curve was measured to be between 42-46 degrees. His Rissar is 4. He was 5'6.5" in June. He was 5'7" yesterday.
His hemi is at T4.
Dr. Betz's recommendation is IF the curve gets to be 50 degrees, we'll do surgery, fusing from T1-T8.

The MRI showed a "think syringohydromyelia beginning at inferior T7 and extending to T9. Syringohydromyelia is also visulized between C5 and T1."

Our peditrician will be sending us to a neuro-surgeon - Dr. Thomas Moriarty, in Louisville, kY.

(I have decided to NOT return to Dr.Mitch Campbell in Louisville, KY at the Leatherman Spinal Clinic, due to his attitude. He actually laughed at some of the questions I had at our February visit. He didn't order full spine xrays, didn't check growth plates, didn't order an MRI, said surgery would never be necessary, etc.) He, in not so many words, told me I was worrying too much!!!! Well, the only doctors in this area who work with spinal issues are in the same group - so due to medical ethics, I wouldn't be able to see any of the other doctors, who actually have more experience working with kids!!!!!!!!! grrrr.

My only qualm about going to PA and using Shriners for surgery is that the doctors are reimbursed by manufacturers of materials used in surgeries....and that bothers me quite a bit.

OK, so that's the update.

thoughts, advice, your experiences??????

blessings...robin

mariaf
07-21-2012, 03:22 AM
You have absolutely the best doctor for kids out there. I understand the concern about where the money is coming from, but all of these doctors get paid one way or another for performing surgery. While there are one or two that money seems to have a little surgery-happy, Betz absolutely is not one of them. He's doing his best to keep kids from having surgery.

Unfortunately, as hdugger says, the doctors get paid one way or another - or maybe a better way to put it would be that the money to perform these expensive surgeries has to come from someplace. Private donations are not enough, I'm guessing, to cover what it costs to run a hospital on an annual basis and perform hundreds of surgeries each year.

That said, there has to be 'some' material used in the surgeries, so the fact that a manufacture pays to have theirs used does not mean it isn't the best material out there. From what I have seen in the past 8+ years, I would never believe that money would be a deciding factor for Dr. Betz if it wasn't in the best interest of his patients to use such material.

Robinlbe - While I don't doubt that it's true, can I ask where you heard this about the manufacture reimbursing the doctors? (Just curious - I always like to learn as much as I can!). Thanks.

rajma
07-22-2012, 09:14 AM
Hi There,
I am 43 yrs old male with congenital scoli, hemi-vertebra at T7 and a couple of fused verterbrae. Never knew I had this problem till I started evperiencing weird symptoms like bladder problems, pain, inablity to sit etc. I have a 72 deg lumar and 40 deg Thoracic plus Kyphosis. No issues with the cord except some stenosis.
I am undergoing surgery this Aug 15. First surgery. I can share my experience post surgery (if I make it back in one piece ).
Congenital scoli is normally very poorly understood. All the 3 surgeons that I consulted recommended surgery because of the pain and gradual nuerological issues.
My take is that I have no regrets that I did not undergo surgery any earlier. I had a pretty normal life till I was 42. If symptoms
start showing up then it makes sense to do something about it.

Pooka1
07-22-2012, 09:21 AM
Hi There,
I am 43 yrs old male with congenital scoli, hemi-vertebra at T7 and a couple of fused verterbrae. Never knew I had this problem till I started evperiencing weird symptoms like bladder problems, pain, inablity to sit etc. I have a 72 deg lumar and 40 deg Thoracic plus Kyphosis. No issues with the cord except some stenosis.
I am undergoing surgery this Aug 15. First surgery. I can share my experience post surgery (if I make it back in one piece ).
Congenital scoli is normally very poorly understood. All the 3 surgeons that I consulted recommended surgery because of the pain and gradual nuerological issues.
My take is that I have no regrets that I did not undergo surgery any earlier. I had a pretty normal life till I was 42. If symptoms
start showing up then it makes sense to do something about it.

Hi. Thanks for posting that. It's a very interesting testimonial.

Did the surgeon mention if it was unusual that the hemivertebra is not at the apex of the larger curve? I don't understand why your lumbar curve is the larger curve unless you have anomalies in the lumbar also.

rajma
07-22-2012, 09:57 AM
Hi. Thanks for posting that. It's a very interesting testimonial.

Did the surgeon mention if it was unusual that the hemivertebra is not at the apex of the larger curve? I don't understand why your lumbar curve is the larger curve unless you have anomalies in the lumbar also.

What can I say, my spine is a mess :).
Seriously though, you are right, its at T10. My scoliosis curves begin at T7. My CT says Partial fusion of T12-L1, T8-T9, T5-6. Right hemi at T10.
My curves are
47 deg right T7 to T12
73 deg left T12 to L4
21 deg right L4 to L5
Kyphosis curves
T2 to T5 5 deg
T5 to T12 26 deg
T10 to L2 44 deg
Lordosis is 39 deg
The apex of my main curves is at L1

Pooka1
07-22-2012, 10:18 AM
What can I say, my spine is a mess :).
Seriously though, you are right, its at T10. My scoliosis curves begin at T7. My CT says Partial fusion of T12-L1, T8-T9, T5-6. Right hemi at T10.
My curves are
47 deg right T7 to T12
73 deg left T12 to L4
21 deg right L4 to L5
Kyphosis curves
T2 to T5 5 deg
T5 to T12 26 deg
T10 to L2 44 deg
Lordosis is 39 deg
The apex of my main curves is at L1

That's quite the collection you have there. :-)

What levels will they fuse to?

rajma
07-22-2012, 10:23 AM
That's quite the collection you have there. :-)

What levels will they fuse to?

The plan is T4 to L4. I guess it is subject to change depending on what else they find in there.

titaniumed
07-22-2012, 03:30 PM
Hi Robin

Be sure to let us know what Dr Moriarty says...so sorry about the syrinx. I hope this visit happens soon. Its good that you are making headway.

I donít think it matters much when a specialist in high regard makes a decision on which hardware company will throw him perks....I think it matters when a GP who has financial problems decides to push NSAIDís to pay the rent. There is a big difference...The hardware systems today are all excellent. In your sons case, its mostly about expertise, not hardware so much.

Do you have any x-rays you could throw up here? These would be interesting since itís rare.

Same for you Rajma. Wishing you success on August 15th.

Ed

rajma
07-22-2012, 04:31 PM
Hi Robin

Be sure to let us know what Dr Moriarty says...so sorry about the syrinx. I hope this visit happens soon. Its good that you are making headway.

I donít think it matters much when a specialist in high regard makes a decision on which hardware company will throw him perks....I think it matters when a GP who has financial problems decides to push NSAIDís to pay the rent. There is a big difference...The hardware systems today are all excellent. In your sons case, its mostly about expertise, not hardware so much.

Do you have any x-rays you could throw up here? These would be interesting since itís rare.

Same for you Rajma. Wishing you success on August 15th.

Ed
thanks Ed, I am fan of your postings.
I had posted my experience and perspective with one X-Ray here with a disclaimer that I am just a patient, not a doctor.
https://sites.google.com/site/scoliosis123/
I will update this once I have some more data.

mariaf
07-22-2012, 05:48 PM
I donít think it matters much when a specialist in high regard makes a decision on which hardware company will throw him perks....I think it matters when a GP who has financial problems decides to push NSAIDís to pay the rent.


Ah, so true. I recall when my mom was seeing a doctor for a pain problem several years ago (her knee, maybe, I can't recall) - she was hoping to do some exercise or PT (she hates popping pills and avoids even OTC meds unless she's in agony, me too). He was very smug and kept taking her copay and writing prescriptions - one of them for VIOXX, which hadn't yet been pulled from the market at the time. When she questioned him, asking if she could go for therapy in lieu of taking meds, he said 'who's the doctor, me or you?'. She basically said to herself 'screw you, doc' and took herself off VIOXX. A few weeks later, it was pulled from the market. Needless to say, she did not return to this doc. Oh, and I guess she was a better 'doctor' than he was.

titaniumed
07-22-2012, 05:49 PM
thanks Ed, I am fan of your postings.


Thanks. Itís a combination of logic and silliness. Hopefully, more silliness.

This forum is about support and knowledge. All surgical decisions should be made by the people that are trained. We can look at our x-rays, and read our testimonials knowing that our decisions on treatment are in the hands of professionals. Always start with a scoliosis specialist.

I see your hemi at T10. Will they do a thoracotomy? Did they explain anything about procedure?

Will this be done in Toronto?

How do you feel about this? Are you ready?

Ed

rajma
07-22-2012, 06:26 PM
Thanks. Itís a combination of logic and silliness. Hopefully, more silliness.

This forum is about support and knowledge. All surgical decisions should be made by the people that are trained. We can look at our x-rays, and read our testimonials knowing that our decisions on treatment are in the hands of professionals. Always start with a scoliosis specialist.

I see your hemi at T10. Will they do a thoracotomy? Did they explain anything about procedure?

Will this be done in Toronto?

How do you feel about this? Are you ready?

Ed
The procedure will be done in Toronto. My surgeon did not mention anything about thoracotomy. He promised that he will see how much he is able to get to correct before he decides on an osteotomy. Depends on the state of my ligaments etc. He thinks I will probably need an Osteotomy because of my hemi.
I am actually looking forward to the surgery. I am not so scared about the surgery (ignorance is bliss). I worry more about the immediate post op period with the daily bodily function stuff. Beyond that I guess a lot depends on how well my surgeon does the surgery and how well my body responds and heals, both of these are out of my control.
My surgeon told me that I have a better chance of winning the lottery than dying on the table. He also told me that in his 22 years, he has not paralyzed anyone, so that's good to know.

AndiS
07-24-2012, 03:14 AM
Not sure anyone will see this.....but after our visit with Dr. Betz in June, we had the MRI done a few weeks ago. Just found out yesterday there is a syrinx.

Now, first of all, please realize, I KNOW how very blessed we are that Samuel has ONLY one hemi and ONLY one syrinx.....after reading on this forum, on the yahoo page, being on the Facebook group, I have seen how much some of you have gone through with your kiddos. I have learned so much from all of you and your experiences, and I do realize that our situation is not nearly as severe. Nevertheless, we are still having to be seen by doctors, still having to consider surgery, make decisions, etc. sigh.....

and I am looking to you all and your wealth of knowledge.....

At Dr. Betz's visit, Samuel's curve was measured to be between 42-46 degrees. His Rissar is 4. He was 5'6.5" in June. He was 5'7" yesterday.
His hemi is at T4.
Dr. Betz's recommendation is IF the curve gets to be 50 degrees, we'll do surgery, fusing from T1-T8.

The MRI showed a "think syringohydromyelia beginning at inferior T7 and extending to T9. Syringohydromyelia is also visulized between C5 and T1."

Our peditrician will be sending us to a neuro-surgeon - Dr. Thomas Moriarty, in Louisville, kY.

(I have decided to NOT return to Dr.Mitch Campbell in Louisville, KY at the Leatherman Spinal Clinic, due to his attitude. He actually laughed at some of the questions I had at our February visit. He didn't order full spine xrays, didn't check growth plates, didn't order an MRI, said surgery would never be necessary, etc.) He, in not so many words, told me I was worrying too much!!!! Well, the only doctors in this area who work with spinal issues are in the same group - so due to medical ethics, I wouldn't be able to see any of the other doctors, who actually have more experience working with kids!!!!!!!!! grrrr.

My only qualm about going to PA and using Shriners for surgery is that the doctors are reimbursed by manufacturers of materials used in surgeries....and that bothers me quite a bit.

OK, so that's the update.

thoughts, advice, your experiences??????

blessings...robin

oh robin...hugs! i'm so glad you got another opinion and further care for your son. regardless of the number of anomolies, this is scary stuff as a parent. none of us want to see our babes go through this, but we must do our best to help them do their best.

please keep us updated. sorry i don't have more to offer, Odella has more xrays in september...we are still very early in our journey.

robinlbe
08-11-2012, 09:41 PM
Sorry I haven't been back before now. The very day of Samuel's appointment with Dr. Moriarty, the neuro-surgeon, was my first day back to school and it has been "life in fast forward" ever since then!!

The doctor was patient, kind, and very thorough! He looked at all our xrays from Philly (June), and before - not being able to see a difference, and looked at the MRI with us present. He said the syrnix is SO insignificant that we do NOT have to worry about it, nor do anything about it. In fact, he said we do not need to return to him. He showed us an MRI of another one of his patients (who had given him permission to do so) who had a "real" syrinx (his words), and we could really see the difference.

Because Dr. Moriarty works closely with the spinal doctors at Leatherman (the clinic here in town where the original doctor was found to be lacking in MY opinion), he and his staff said that the doctors there do NOT have a problem with patients seeing other doctors in that practice. There are two other doctors who have more experience with pediatric patients that the Dr. Campbell we saw. I'm thinking I'd like to get a third opinion, although I know Dr. Betz is the best.

As far as where I saw that the doctors are compensated for using certain companies' products, it was either on their website or the literature they gave us during our visit there. I'm about 95% sure it was on the literature we rec'd during our visit.

I'm glad to read that, was it Ed, maybe?? was able to wait until age 42 to have surgery? That's encouraging to me.

I just really hate to go into surgery if it's not absolutely necessary.....but yet, since we're sort of on the borderline, I don't want to mess up....
you know. NOT have the surgery if he's really going to need it, or HAVE the surgery if it would turn out he would be ok.

Right now, since supposedly he's at rissar 4, we might be ok. Here in the Louisville, KY area, they measured him 34-38 degrees, but at Philly he was measured 42-46. Surgery is recommended at 50.

But, Samuel is in no pain, has no numbness, etc.

anyway, I KNOW how blessed we are that this is SOOOO minor in comparison to what so many of you and others are facing.
There is an xray of Samuel on one of my earlier posts.
I'll go back and find it and on my next post, let you know which one to check.

Blessings...
robin

robinlbe
08-11-2012, 09:45 PM
#26 posting has the xray which was taken in October, 2011.
this shows the congenital scoliosis and was the very first xray we had taken and the first time we had known about this.

The xrays taken in February and June don't look too much different, if at all.

blessings,
robin

rajma
08-12-2012, 07:26 AM
Hi Robin,
I had not seen this article on Conenital Scoli before on long term outcomes. Perhaps you fill find it useful
http://www.scoliosisjournal.com/content/pdf/1748-7161-6-12.pdf

susancook
08-13-2012, 03:02 AM
I've shared this info. with my husband....and about the Shriners hospitals with my son.
I do think we will get the 2nd opinion.

We need to get the xrays on our own disk/flashdrive or something. Right now, they're at the hospital.
We'd like to avoid surgery, if at all possible. As long as our son is not in pain, and the curve is not causing him problems...and is not progressing. Of course, we won't know *that* until the next visit (in February) with the next round of xrays.

I feel like being an ostrich right now, quite frankly!

In the last two years, we have dealt with my own breast cancer, my mom's two surgeries (with her contracting MRSA and nearly dying with the first), my daughter passing out and ending up with severe concussions twice, two high school graduations (and kids going off to college), and my teaching jobs being reassigned three years in a row......I've had quite enough, thank you very much... :rolleyes:

Oh, and not to mention I turned my ankle - which ended up as three fractures there, and a total of three casts!!! And then just three months ago, I tore the tendon in my right ring finger (which doesn't sound like a biggie, except that I was in a splint for eight weeks 24/7, and then it took another month to get out of it altogether!!)
.....yes!!! All of those things since November, 2009..... yippee....Life is a roller coaster, if nothing else!

Did I mention "stress" was my middle name right now??? ha!
anyway....thank you for being here for me in this newest test and trial in my faith.
God is faithful and He will carry us through this, too....
I'm just holding on for this ride, too....

blessings...
robin

Robin, sounds like you can handle everything! Getting more information and second and third opinions will give you increased confidence.
Susan

gonzorini
08-14-2012, 02:03 AM
Hi, I'm a 58 year old male scocialite with a hard 90 degree turn to the anterior (front) and a curve back to normal. As I was growing up, they had me do exercises, stuck me in a brace during my teen years to basically no effect. I was active doing lots of bicycle riding as a teen from my home in Van Nuys, CA to places like Thousand Oaks or the City of Ontario to Santa Clarita and Palmdale. I don't know if that helped let my back grow and set up so it would continue to work.

I was told that surgery was dangerous as well, and have never attempted it because my back does not cause me pain unless I get it scrunched up, or lay on it too long watching meteors as I did over the weekend. All the doctors plead the no harm no foul rule and won't suggest surgery unless it starts getting too painful or having other problems.

I'm wishing you much success in your journey. Good luck!