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Shirley
26th September 2006, 03:54 PM
Hi

My son has recently been diagnosed with Congenital Scoliosis, and has seen a specialist here in Ireland. However we have been told just to wait to see how the curve progresses. He will have to have an x-ray every 3 months to monitor his progress. He also has to have a heart and kidney test (still waiting to hear when).

I am slightly concerned at the relaxed approach, and wonder if he is actually getting the best treatment. I would travel anywhere just to make sure he is getting the best treatment there is. Does anyone know who the best specialist in Ireland is ? The problem is at the base of his spine.

Thanks.
Shirley

titch
26th September 2006, 05:50 PM
Did you get given any idea of what size his curve was? As it happens, if it is small then with it being congenital, monitoring it regularly for progression is probably the best way to start off - I can't remember the percentage without looking it up, but there is a surprising percentage of congenital curves which just don't progress or ever require any treatment beyond watching them.

Having said that, of course you don't want to take any chances with his care. Whereabouts in Ireland are you? There's a few good surgeons in Dublin, including Ashley Poynton who recently did an incredible surgery for one of our staff, Chele (thaleia's spirit). There's a couple of other surgeons there too. I also understand from the clinic where I am treated here in the UK, the Centre for Spinal Studies and Surgery at Queens Medical Centre in Nottingham, that they have quite a few people travel from Ireland to be treated by surgeons there. My surgeon, Mr Webb, treats all ages and takes on particularly complex cases, but the whole team is great and any of them will refer you sideways to a different, more experienced or more specialised surgeon in the team if that's what's needed.

It's great news that they're checking out your son's heart and kidneys, as there can sometimes be some anomalies with them in cases of congenital scoliosis. I would definitely recommend getting a second opinion though to put your mind at ease over the treatment plan if you are worried.

Meanwhile, I'm sorry for the circumstances that have brought you here, but :welcome2: We'll do all we can to make your journey through this smoother, and at least it will not be alone :squeeze:

newgirl
26th September 2006, 06:02 PM
Hi Shirley and welcome to SSO.
I am based in Ireland and have a 3yo with ideopathic infantile scoliosis, been treated with casts/braces at the moment.
We are currently seeing Mr. Damian Mc Cormack in Temple st but just in the last month as out previous surgeon retired.
Mr. Dowling in Crumlin is also very well recommended
Mr. Paul Connolly replaced Mr. Mc Manus in Temple Street but I do not know anyone who attends him, but I am sure he is very experienced also.
Where are you based?

As Titch said monitoring the curve is not an unusual practice if the curve is not severe enough to warrant immediate intervention. Niamh was monitored for 9 months before it was decided that she required treatment.
Sorry this is a bit rushed, I will check in again during the week and if you have any question don't hesitate to ask, they are a great crowd here.
nicola

DublinPauline
26th September 2006, 06:08 PM
Welcome Shirley.
I have congenital scoliosis and live in Dublin. I had surgery for my scoliosis when I was 13. Hopefully your son's curve won't progress to the level mine did (non specialist orthopaedic doctors watched it get worse until my parents got me to a scoliosis specialist when I was 10 and started wearing a brace) but regular monitoring is the only way to tell the rate of progression.

I think you should be able to access world class specialists here in Ireland. As Titch said, Chele had very successul surgery done by Mr Ashley Poynton this summer. One of the children whose parents are active on this forum saw Mr Frank McManus in Temple Street (I also saw him for 2 yearly check ups) but he has now retired. Please PM me if you want to give further details that you mightn't like to put up on a public forum.

By the way, hopefully this won't turn out to be relevant to you but I also had a congenital heart defect (VSD) which was successfully repaired when I was six in 1972. I've been told that this would be treated much earlier now and even with surgery happening so late, it has genuinely not held me back.

sins
26th September 2006, 06:16 PM
Hi Shirley and welcome.
I believe Mr Dowling has retired and is not taking new patients.
Mr McCormack and Mr. Connolly would be the main paediatric scoliosis specialists at the moment.
Until all the MRI scans are back and a full work up done I expect monitoring is the preferred option no matter where you go.
Many congenital curves do not progress(depending on the type) and I can't imagine any surgeon would rush to a surgical solution unless it was strictly necessary.
It's important to check the kidneys and heart as there may be an accompanying defect along with the congenital scoliosis.
I know it's hard to be patient, but if your surgeon is one of the above mentioned ,I'm confident that you'll get the most expert opinion available.
If we can give any more support or info please ask.
Sinead.(Cork)

Little Ali
26th September 2006, 06:42 PM
Hi! Just wanted to say :welcome2:

Shirley
27th September 2006, 10:43 AM
Hi,

Thanks to all who responded to my query so quickly! The replies have put my mind at ease slightly. I am not sure of the exact degree of curvature; I hope to find out this Friday. The specialist he was referred to was mentioned in the responses (donít really want to say who!) so thatís probably good. Unfortunately I am extremely sceptic of all doctors, and feel getting a first hand insight into other peoples experiences, is the only way to go. He is too young to have an MRI scan at the moment so he has to have regular X-rays until he is older. I suppose I have to be patient and wait.

Thanks again,
Shirley

sins
27th September 2006, 12:17 PM
Hi Shirley,
Unfortunately the waiting is the hardest thing to deal with in scoliosis.
Don't be afraid to ask questions during your appointment.In the meantime, try and find out as much as you can about scoliosis.There are a few different types of congenital scoliosis and some types can be very stable and not progress very much in a lifetime.I'll pull up some threads for you which will explain this for you.We have another lady from Dublin with twins and one has non progressive congenital scoliosis.Just do a forum search for all posts by Franie.
Anyway, just to let you know, we're here for you if you need us and good luck on friday.
Sins

sins
27th September 2006, 12:28 PM
http://www.iscoliosis.com/causes-congenital.html

This has a good explanation of congenital scoliosis.
Sins

Sealy
27th September 2006, 12:58 PM
One thing that sticks out in my mind about congenital scoliosis and whether it has the potential to progress with growth is the location on the vertebral column and if it has the ability to *unbalance* everything and cause problems down the road. I think it's important to find out what kind of deformity you're dealing with because sometimes doing surgery on a congenital curve at an early stage results in a better outcome.

Here is a really good presentation on congenital scoliosis by M.J. McMaster at 9:34 a.m. It is a bit graphic but otherwise it's excellent and gives you a great overall picture of congenital scoliosis:


http://www.istreamplanet.com/srs/default.a...a&conf=3&edi=12 (http://www.istreamplanet.com/srs/default.asp?np=media&conf=3&edi=12)

andrea
29th September 2006, 06:41 PM
Hi Shirley and welcome to SSO. I'm afraid I have little knowledge of congenital scoli as my daughter has the ideopathic variety.

It's so difficult to be patient in these circumstances. I didn't realise you could ever be too young for an MRI (learn something new every day on this site :D ). Do you know when you might be able to have one?

Hope today went well and you at least have some answers.

newgirl
29th September 2006, 10:35 PM
Hi Shirley,
I hope you got answers to some of your questions today and that you are feeling happier.
It is good that your son is seeing one of the surgeons mentioned as they are all very experienced.
I know that as a parent, it is very difficult to trust any doctor to do the best by your child but I do think it is important to have trust in and to build up a relationship with the doctor who is treating your son. Mind you it has taken me 3 years to reach that conclusion. :hammer:

Keep in touch,
Nicola

conni60640@gmail.com
4th October 2006, 02:58 PM
Hi Shirley. My son Billy also has congenital scoliosis. His main problems are also at the base of his spine. He just turned six this summer, and watch and wait was the story of our lives for the first six years of his life. Depending on what the anomaly is, some curves do not progress much at all, some may progress very rapidly. We ended up doing a spinal fusion this summer, but in our case it was mainly due to spinal/pelvic instability from his partial sacral agenesis rather than his actual hemivertabra in his spine, which by itself may never have needed treatment...

There is a group specifically for congenital scoliosis on Yahoo at http://health.groups.yahoo.com/group/Conge...oliosisSupport/ (http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/) that could help you sort out the various ins and outs of congenital scoliosis, which is usually treated much differently than idiopathic scoliosis. For example, bracing is not usually done since it cannot "fix" the incorrectly formed spine, although a tiny percentage of curves may be helped by a brace. There are good links to articles involving congenital scoliosis.

This group is wonderful also, besides being very nice and supportive, they can help you find the best local care for your child, as the other group is based in US. I also appreciate hearing the views of those who have been there done that. I am of the opinion the more info you can gather the better, and belong to several scoliosis groups :)

Good luck with the heart and kidney tests, it's good that your docs know to look in these "hidden" areas, as anomalies there can occur since the midline organs form at the same time and a problem in one area can possibly indicate other problems. Hopefully this is not the case for your child, although it was for mine.

conni60640@gmail.com
4th October 2006, 03:54 PM
Sealy, I checked out that lecture by McMaster, wow that was great! I linked that on the congenital scoliosis group! Lots of great xrays and pics, and good descriptions of the different types of anomalies and their prognosis... Much more interesting and personal to hear it "live" with pictures vs. reading it :) Thanks for the link!

ncivettini
30th November 2006, 07:43 PM
Hi New Mum,

I am also a new mom - I just joined a few mintues ago when I read your post! I read in one of the messages that your son is too young for an MRI. I'm not sure whose doctor is "right" (these things are often more a matter of what is right for each individual child), but my six-month-old daughter will be having an MRI in a few weeks. I noticed her curve at 2 months of age, but she was not diagnosed until 4 months. I have also heard from other parents that their infants have had MRIs before 6 months.

I just wanted to let you know that they do perform MRIs on little ones, in case you were thinking of a second opinion. It IS more risky, because infants must be completely sedated to sleep through the whole thing. :yawn: Your hopsital may have a policy of not doing MRIs on infants because they don't want to anesthetize them, which may be fair enough. Our first ortho refused to even consider treatment until my daughter was one year old. I sent all of her records to Shriners in Erie, and they requested an MRI right away.

Best of luck to you and your family! You are a great mother for learning all you can for your little guy.

ncivettini

tonibunny
30th November 2006, 11:19 PM
Hi there ncivettini, welcome to SSO :welcome2:

I'm so sorry to hear that your little daughter has scoliosis, but well done to you for spotting it so early. I was diagnosed with infantile idiopathic scoliosis myself when I was six months old. Do you know if your daughter has idiopathic or congenital scoliosis? Have you any idea how big her curve is?

Please do post and tell us more!

Toni xx

crkcallie
30th November 2006, 11:30 PM
Hello there,
I just read your message about your son having congenital scoliosis. I don't like that wait and see approach. I tried that when I was first diagnosed with scoliosis and my curves only became worse. I now have a 90 degree curve that has become life threatening and it is interfering with my breathing. I hope all goes well for you.

Sealy
1st December 2006, 04:50 AM
Originally posted by conni60640@gmail.com@Oct 4 2006, 07:54 AM
Sealy, I checked out that lecture by McMaster, wow that was great! I linked that on the congenital scoliosis group! Lots of great xrays and pics, and good descriptions of the different types of anomalies and their prognosis... Much more interesting and personal to hear it "live" with pictures vs. reading it :) Thanks for the link!
You're welcome Connie! I just saw your second post now :oops: When I first viewed Dr. McMaster's presentation, I thought ~Wow, this says it all !~

Shirley
4th January 2007, 05:28 PM
Hi again,

Itís been a while since i checked the site so thank you to all those who continued to post information. Much of the time has been spent getting some tests and waiting for results. All associated tests so far are clear (awaiting a renal ultrasound) so thatís good news. In brief...two x-rays were taken (July and Oct) and sent to my sonís consultant in October. Almost 4 weeks later i received a letter to say the curve was 10 degrees and had not progressed. You can imagine my joy. Another 3 weeks later i received a letter to say the x-ray was not assessed correctly and the curve was actually 35 degrees. You can imagine my horror. I am furious.
I have now arranged to meet the consultant again (even though he suggested to leave it for 6 months) to discuss this in person. I also feel the bump at the base of my sons back (left side) is getting bigger. Can anyone explain what this is? Does anyone know if he could be in pain in any way?

I am also arranging a second opinion. I am interested in contacting Ashley Poynton or Dave Connolly both in Dublin (ireland) so i'd be interested to hear peoples opinions of them or recommend anyone else. Many thanks for the great help so far.

emza
14th December 2010, 04:06 PM
hi Shirley ,
sorry to hear about your son ,its so hard finding out your little babys got something wrong but the doctors have to monitor him for a while ,keep everything crossed for you and your family, i have a son with congential kyphosis hes 19months old and doing great not quiet walking yet but done 7 steps !! so proving docs wrong as they didnt think he'd walk before he has surgery , im feeling more scared as his op date is 12th january at rnoh in stanmore , and as any parent im dreading it but other
people have alot worse .
is there anyone out there whos had a baby thats had spinal fusion posterior and anterior as i could do with any advice ,
on pre op and post op as i have so many unanswered questions hugs emza

Rachel
15th December 2010, 12:36 PM
Hi and welcome

My son is now 2yrs 9months, but was diagnosed at 9months with idiopathic infantile scoliosis after we noticed his rib cage bulging to the left at 6-7months. After a referral from our local hospital to Alder Hey Children's Hospital in Liverpool, Adam did have both x rays and an MRI at 9months old. This told us it was idiopathic rather than congenital. We too were given the wait and see approach but 9-10 months later his curve had doubled and he went into plastercasts. We're about to enter the next phase of his treatment as he's due to move into removable, plastic braces in the new year. Anyway, if we can help in any way, do let us know - the waiting is horrible, the fighting to get what you need for your child even worse but from what I hear, children adapt and cope with it all incredibly well and that's certainly been the case for us.

Take care
Rachel

andrea
16th December 2010, 10:24 AM
Hi Emza

I've just got home from Stanmore. I don't know too much about congenital, but I wonder why they are doing a fusion and not inserting growth rods? Has that been mentioned to you? It's possible that they wouldn't be used with congenital scoli, I guess it depends on the circumstances. Who is your consultant? They are all brilliant there, so I have no doubt you are in the best hands.

We don't have any children who have undergone fusion at such a young age (I don't think), but we do have adults who underwent it as youngsters and who are doing very well now :)

Let me know if you have any specific questions - I've very familiar with the hospital. Have you booked a room for yourself in the parents' block?
Welcome to SSo xx

Mustang Sal
17th December 2010, 06:58 AM
hi Shirley ,
sorry to hear about your son ,its so hard finding out your little babys got something wrong but the doctors have to monitor him for a while ,keep everything crossed for you and your family, i have a son with congential kyphosis hes 19months old and doing great not quiet walking yet but done 7 steps !! so proving docs wrong as they didnt think he'd walk before he has surgery , im feeling more scared as his op date is 12th january at rnoh in stanmore , and as any parent im dreading it but other
people have alot worse .
is there anyone out there whos had a baby thats had spinal fusion posterior and anterior as i could do with any advice ,
on pre op and post op as i have so many unanswered questions hugs emza

Hi Emza, :welcome:

I'm an adult with congenital kyphoscoliosis (my lumbar curve was caused by a hemivertebra, and as such caused a kyphosis and scoliosis), but was lucky enough to not have a curve that required fusion as a small child (I was 17, and had stopped growing so it was done for reasons other than to halt curve progression) - i'm sorry that your son is in the surgical category, but please be assured that he's being treated at arguably the best possible place, as Andrea says. I also took my first steps a little late (18 months) but walked without walking aids until I was 15, so very much had a 'normal' childhood :) I hope you'll find this place informative and supportive in the run up to the surgery and beyond.

Andrea, I think Kimberley (JFKimberely) had fusion surgery as a baby (I think?) but she doesn't post much here any more. I really don't know enough about growth rods to comment, but I guess congenital kyphosis/scoliosis doesn't respond to it, perhaps because no matter how you try to straighten a curve, whether by bracing or rods, the vertebra(e) will still be malformed whichever way you swing it, and curves severe enough will always require fusion as progression can be very rapid indeed. I'll have a quick scan of the stuff i've got on this as soon as I can get back on my old computer, it's 'sick' at the moment :p

Anyway, glad you found us Emza - I wish you and your son all the best for his forthcoming surgery :)

louise_23
19th December 2010, 11:14 AM
Hi Emza and welcome!

:welcome2:

Vesna
7th February 2011, 12:03 PM
Hi Shirley,

just to say 'hi' and welcome you.
My son has congenital scoliosis due to hemivertebrea in thoracic and lumbar areas (therefore he had double curves);I noticed a lump in his lumbar area when he was 9 months old and that's how i got him checked out. He was monitored since then (MRI's, x-rays, internal organs, breathing tests, quantec), no bracing. His condition was stable until a year ago when he started growing rapidly and his curves progressed as well. He had spinal surgeries 2 months ago and he's doing really well now. He was treated in Dublin, Our Lady's Children's Hospital since he was small intially by orthopeadic surgeon and finally by scoliosis specialist Mr. Pat Kiely who performed both surgeries.
If you have any questions, let me know. There are details of our process over the years in my thread.
Wishing you well,
V.