View Full Version : very new scolie mom
26th January 2006, 03:22 PM
Dont really know way around this site yet so unclear where to start.
In first instance would especially like to hear from other parents, those with experience of high curves, in region t3. Daughter 13 nearly, but I think shes got some growing to do yet(shes vey petite). Right shoulder quite prominent already - since NOV 05. Waiting for 2nd appoint - this time with surgeon at Woodlands in B'ham england.
It will be approx 7 months from time of note till seen by Dr Marks. - the surgeon. Does that sound a long time and what do any of you know about Dr Marks? our first orthopeaedic Dr, Dr Bradish at the childrens Hospital mentioned surgery but not a brace, but then I think hes a general orthopaedic surgeon. I am a bit surprised cos I would have thought bracing would have been the less traumatic option and worth a go. Sorry dont know exactly the degrees - just that the curve was a very obvious C on the x ray. is everone automatically referred to an ortho surgeon or does this imply something surgical is inevitable. Does the surgeon also organise braces if needed?
I need to tap into your expertise and experience.............
I could do with a list of questions to ask as I was too shocked to ask anything at the first visit - just coping with the term Scoliosis was enough. I dont want to miss anything important.
Many Many Thanks Helen
26th January 2006, 03:34 PM
Hi helen, :welcome2: I'm abbi, and I think we have briefly met on spinekids ("Abbi17" is my username)
I don't know a lot about Mr Marks.....but he does treat one girl whose parent comes on here (her name is "Gadget") I think 7 months is a reasonable amount of time to wait to see a scoliosis consultant from diagnosis...., I waited 6months, so I guess its about avergae!
When are you due to see Mr Marks again?
To my knowledge, I believe everyone is referred to an orthopedaic surgeon, they will do x-rays, and work out a treatment plan!
As for questions, I think you need to ask what degree your daughters curve measures, and what treatment do they intend to carry out!
Hope that helped a little....if you have any other questions, just ask!
26th January 2006, 03:34 PM
Hi Helen and welcome.
Firstly, youve certainly come to the right place.
Gerbo who runs the non surgical forum has experience of Birmingham and Gadget whos daughter has scoliosis attends Mr Marks in the same hospital.
Because of your daughters age, bracing might be an an option, so don't fret too much about the possibility of surgery.Only the specialist who examines her in Birmingham can say for sure if she needs it.Until then there's no point in stressing yourself over it.
Seven months seems like a very long wait.Also from what other people have said, phone calls on a regular basis might be in order to see where she is on the list.
Can you afford a private consultation with the surgeron yourself? Seeing as you already have x rays taken it might be worth considering that option.
I have an upper thpracic curve myself, have had surgery in the 1980's for it.It can seem more obvious because of the shoulderblade loaction.
Take your time helen and in a day or two youll have no problem finding your way around the site.
Well do all we can to answer your questions.
26th January 2006, 04:54 PM
hi helen - welcome to SSO, glad you've found us
first off a brilliant idea which a lot of us swear by is keeping a notebook dedicated to your daughter's spine. some people use it to record their pain levels, others to write down questions for their surgeon and then make note of the answers they are given. it can be a lot to take in and some people are easily intimidated by busy doctors, but it's crucial that you get as much out of each appointment as is humanly possible!
the other thing is we have a wealth of knowledge between us, so feel free to abuse us (you can read about me at the end of my posts... although yes i'm another one who ended up in theatre, i've been through bracing too)
a surgeon will refer you to an orthotist (person who fits for and makes braces) and it is vital that they are skilled in order to achieve enough correction and a proper fit
if you have any questions, feel free to ask
26th January 2006, 04:59 PM
Hi Helen, :welcome2:
Glad you've found us despite your circumstances. You'll be pleased to hear you're at the right place for advice & support. Many of us have had surgery (including me 13 weeks ago) & many of us haven't.
We're all here for you.
26th January 2006, 05:54 PM
Hi Helen, and welcome to SSo.
7 months dos sound like along time to wait so kep pushing the doctors in the mean time. I actualy have adiary with all my information init about pain levels etc and i bring it to my appointments with me. That way the consultant can see how I've been doing for himself and it often assists them in deciding what the next course of action is.
When they did the xrays for you, did they tell you what measuremnt her curve was by any chance? That's one thing you nee dto know, and it helps you see on futture case whether its progressing or remaing stable.
26th January 2006, 05:58 PM
Welcome to SSo Helen :wave: there's very little I need to say that hasn't already been said except that it's a good idea to ask:
What size her curve or curves are (obviously)
How skeletally mature she is - what's her Risser sign?
and, for posterity, many of us take pictures of our x-rays at each appointment while they are up on the light box (surgeons are usually quite amenable; turn the flash off; turn the room light off) and if you look in the Member Galleries there are many of our x-rays there.
I hope your daughter's scoliosis isn't particularly painful.
I was properly diagnosed age 14 with curves of 30 and 53 degrees, and I was braced for nine months while I was on the waiting list for surgery and then was fused July 04 in Stanmore. I'm now 17, 18 in April, with insignificant curves.
26th January 2006, 06:48 PM
Helen, I am really sorry to hear that you and your family have found yourselves in this situation and I do know, like many on this side, how you are feeling, upset, shocked, worked up, confused, etc. It is literally "I've been there" myself and I know how bewildering it feels in the beginning Worst is not knowing what will happen and what to expect, but I can asure you, things will get easier as you gain knowledge and insight and in this a forum like this is a very good place for guidance and direction and lots of support.
We did go to Birmingham with our daughter of now nearly 12, although for various reasons are going elsewhere now. I will try to answer you questions, feel free to ask further questions afterwards if you want
It will be approx 7 months from time of note till seen by Dr Marks. - the surgeon. Does that sound a long time
Yes, that does sound like a long time, although that is dependent on the exact nature of the problem and the likelihood of it getting worse in those 7 months whilst waiting
I do not know whether there is anything specific about high thoracal scoliosis, but do know that in general young girls, in or just before their growth spurt, special;ly with a curve in the early 20's onwards, there is a high risk of progression. Whether all this applies to your daughter is hard to know from here. It might be worth going to your GP, expressing your concerns and asking him/ her to check with first consultant whether 7 months wait would be acceptable in view of his findings. He could try to bring the appointment forward for you or maybe refer you elsewhere where there is a shorter waitinglist. GP should also have letter from first consultant with all relevant info in it. You could ask for copy to share that info with us, so we can give better advice.
and what do any of you know about Dr Marks
we saw mr marks first with our daughter, and he was really nice and clearly knows what he is doing, there is no garantee that you see him, as the 3 consultants share the patients between the 3 of them, and from appointment to appointment you could see a different one every time (that was one of the reasons we changed)
I am a bit surprised cos I would have thought bracing would have been the less traumatic option and worth a go
you are absolutely right, but depends a lot on the current degree of the curve, so it seems essential that you find out
is everone automatically referred to an ortho surgeon or does this imply something surgical is inevitable. Does the surgeon also organise braces if needed? Yes, no and yes
Hope this helps you a bit, first priority is to get exact diagnosis clearer asap, and first point of call for this should be your GP, once that is clearer, you can start thinking about your treatment options and again, lots of advice will be available here.
By the way, how is your daughter taking it all, how was the problem spotted in the first place?
With best wishes
26th January 2006, 09:44 PM
Hello me lov, and welcome.
My names Emily. I was diagnosed at 15, and braced. I am now 20, my curves have progressed, and I have 2 now isntead of just one.
Panic not however, the thing with me is, I was very self consciouce, and in the end I stopped wearing my brace at all. Which was soooooooooooooo stupid. If I had worn it I might not be in this situation now (awaiting surgery).
I have to say also, as a credit to this forum, if I had found this place when i was still wearing my brace, I would have had the strength to continue wearing it. x
27th January 2006, 11:23 AM
Welcome to SSO i hope you enjoy the site everyone is so friendly and there is a lot of scoliosis experience around. Hope you can find all the answers to your questions
27th January 2006, 11:33 AM
Woah, not much i can add to whats already been said other than a big warm welcome. I hope you get all the needed support here.
We have a great bunch here with experience and first hand knowledge, many of which are parents.
27th January 2006, 06:15 PM
Hi Helen and welcome to SSO. I am also a scoli mum, although my "baby" is 3 and a half. We have been dealing with scoliosis for 20 months now and have a long journey ahead. While I know what you must be going through, unfortunately I can't advise with regards to the hospital or a high curve. I would agree that 7 months seems like a long time to wait (an eternity if you're the people involved). It does get easier to deal with and talking to others like these guys who have all been through it or are going through it, helps immensely.
Best of luck with your next appointment.
28th January 2006, 08:19 PM
Welcome to the site. I have some very large curves that have never been treated. I do not reccommend ignoring it. I have waited too late and now can't have surgery because my lung function has deterioated too much. I am also rapidly approaching 55years of age. Welcome to the site. The best advice I have for everyone is to get a notebook and write everything down. Take it with you to the doctors and write down notes of what he says. I also reccommend that you get and keep copies of all tests and xrays. I also get copies of the doctor's notes after he sees me. All this usually can be done by asking - or offer to pay for the copies. Your daughter will need these notes and films for the rest of her life and clinics, doctors and hospitals are renowned for losing stuff.
14th April 2006, 05:53 PM
I know this is a long time you originally posted on here, but I've only just joined the site and have just found your posting!
I was treated at the Woodlands ROH in Birmingham and the consultants were fantastic, I believe I originally waited around 6 months for an appointment so sunds about right.
As Gerbo mentioned, the consultants do seem to share patients, I originally saw Mr. Thompson but have also seen Mr. Marks in clinic as well. Not had as much contact with Mr. Marks but when I saw him when I was less knowledgable about scolsiosis he was great at explaining stuff and very nice. Have had more appointments with Mr. Thompson who is fantastic and takes a lot of time for you when he see's you (which has the downside of occasionally waiting ages after your appointment time-but it's worth it).
Any more questions about being treated at Woodlands I'd be more than happy to help answer if I can! The people on here have been great in answering my queries, everyone has a lot of knowledge and is really friendly!
27th April 2006, 08:18 PM
I've only just noticed this post too!
Hello there! :welcome2: Glad you've found us!
3rd May 2006, 09:25 AM
Iam a mother of 11yr old daughter with congenital scoliosis. It can be and is very hard to take in all what you are being told 7 months may seem like a long time but is about average.
A bit of advice i was given and have used on my last appointment;
take a mp3 player with you that has record option that way you can listern to all thats been discussed during a appointment and make notes afterwards. I found that a great help because like all us mum dads etc when we go to our appointments there is a lot to take in and trying to remember all that was said is very hard especially if you get told something that shocks you everything else said becomes a blur as all you have going through your mind is the worse. I found by recording the conversation i could listern as many times as i liked and its amazing how much you didnt hear during your time in the consultation room.
Through this you can make notes of points that were mentioned and quiery what is said.
Iwish you luck your in the right place for loads of help and support.
19th May 2006, 02:52 PM
I've only just joined this site, but as I was treated by the ROH team, I'll offer my two-pence...
I was diagnosed when I was 13, and operated on age 15 (I needed three operations, I was a bit complicated). I was referred straight to the ROH, as the paediatrician who was seeing me told me they were 'the best in the business'.
Seven months sounds about right. Don't be surprised when you need scans, X-rays and tests, and are seen again with the results of these. You probably won't be seen anywhere near your appointment time, so take some reading material! What both Mr Marks and Mr Thompson are good at is explaining what is going on. They have groovy models and manipulate them to show you what is happening in your particular case. They will also give and take as much time as you need to ask questions.
They often have their underlings see you as well - don't be alarmed, as far as I've seen they will always speak to you personally to talk about surgery. There may well also be medical students around, but you can kick them out if you don't want them there!
Ask about the condition, how serious they feel it is, what they intend to do about it, and when they intend to do it. Take a note book with you, and write things down. Carry it around with you and jot down questions as you think of them. Ask (if surgery is needed) to see the ward and meet the staff. This really relaxed me the first time I was admitted, just knowing who would be around and where the toilets are makes all the difference!
Good Luck - feel free to ask anything here as well
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