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Juliar
6th May 2007, 12:41 PM
After getting the run around initially and being told my son did have kyphosis, then he didn't again... I pushed for more x-rays ( stood up, head to toe and lying down) and a new MRI (thanks to the advice on this forum) my son now has an appointment at Alderhey with a Mr Dorgan but not until August.

I'm just wondering if you can give me any advice on what to expect on that first appointment. Will it be another chance for the Dr's to fob us off or do they usually go well. What kind of questions should we ask? We havent' been told the Cobb angle still so I'm hoping to learn that at the appointment.


Also, are any of you familiar with Mr Dorgan ?

Thanks.

mark
6th May 2007, 08:33 PM
Hi Juliar

Welcome to SSO

I hope you find the site useful and supportive

Heres some links that may help answer some your questions

http://www.scoliosis-support.org/modules/i...&showtopic=2001 (http://www.scoliosis-support.org/modules/ipboard/index.php?s=&showtopic=2001)

http://www.scoliosis-support.org/modules/i...&showtopic=3264 (http://www.scoliosis-support.org/modules/ipboard/index.php?s=&showtopic=3264)

http://www.scoliosis-support.org/modules/i...&showtopic=2681 (http://www.scoliosis-support.org/modules/ipboard/index.php?s=&showtopic=2681)

GillyG
6th May 2007, 09:01 PM
I'm glad you managed to push for more x-rays and MRI, it's great to think the forum helped give you a boost of confidence.

I'm not as familiar with all the consultant's names and specialties as others on the site, but if your son has been referred to a spinal specialist then you should hopefully get some of the answers you need.

I would advise you to write down any questions you want to ask, and get your son to think of a few of his own, and take these along to the consultation. Many of us find we go completely blank when we finally get to see someone who has all the answers!!

August must seem a long way away right now, but I'm sure the time will fly by. :D

Good luck!

Gilly xx

Amazed Jean
6th May 2007, 10:21 PM
Juliar, Congratulations on pushing for better treatment for your son. Well done Mom! Mark has some excellent references for you and I advise to keep a notebook to write questions for the doctor in. Take it with you and note what he answers. We also like to tell people to get copies of xrays or photos of xrays(take a camera and ask them to put them up for you). He is going to need them for the rest of his life to check progression etc.

Juliar
12th May 2007, 12:39 AM
Thanks for the answers. We are also going to the a clinic for a consultation using the Katharina Schroth method. Have any of you any thoughts on how successful that method is as opposed to the more clinical / surgical route ?

I'm gutted tonight. My son told me that he's being called all kinds of names because of his posture and is really upset by it. Up until tonight I really thought it was something that the general population wouldn't notice. Now I guess I have to realise that it's very obvious. I feel so bad for him and just hope we can get the progression under control.

tonibunny
12th May 2007, 01:10 AM
Hi Julia,

As yet we don't have any members who have undergone Scroth therapy, but we have discussed the UK Scoliosis SOS Clinic, which offers treatment based on it, here (http://www.scoliosis-support.org/modules/ipboard/index.php?s=&showtopic=4060&hl=schroth).

As you will see, many of us are sceptical about this and we are hoping that Ms Maude will answer our various questions about it. Scroth Therapy as practised on the continent does seem like a very promising treatment for cases that are borderline for surgery, or which are not severe enough to be considered for it, but I would be wary of choosing this for a severe curve without the recommendation of an orthopaedic spinal specialist.

I'd also advise that you are wary of the information sent out by alternative clinics in general, as we have seen info sent out by some that uses references to outdated medical texts and articles (some of which are more than 30 years old!) to make surgery sound a lot more traumatic and dangerous than it actually is.

Good luck!

Toni xx

Amazed Jean
12th May 2007, 01:19 AM
Juliar, I know very little more than what you can find on the internet about Scroth method. I have yet to actually talk to a real living person that has any proof that it works. I am heartsick for your son having to deal with people saying things about his scoliosis. I would like to tell you it isn't so bad but in all honesty I felt so horrible during my teenage years when people said stupid things that I couldn't wait to grow up. It didn't stop but I have a very pronounced hump. Please tell him to talk to people when he needs to and reassure him that he is welcome here - many of us have made it through these situations with the help of SSO ers.

sins
12th May 2007, 06:06 PM
Hi Julia,
August will come around pretty soon.As Jean has advised, keep note of all your facts and figures.Certainly there's no harm having an initial consultation with a schroth practitioner.It would be interesting to see what they have to offer by way of diagnosis and treatment.It is very expensive though and I am not convinced of it's effectiveness on large curves.But certainly, see what they have to say, and how much it will set you back financially.Before handing over any money, look for published evidence of successful treatment for adolescents in your son's situation.
Also if you choose the non surgical route,keep your consultant in the loop about what you're doing.
Unfortunately we cannot endorse or recommend any treatment or clinic on this site.Patients can only share their own direct experience of various therapies and hospitals and in the end you'll have to make the decision about what's best for your son.
I understand what he's going through with all this namecalling and obnoxious behaviour.I hope he can rise above it and get a satisfactory treatment for his spine.
Sins

Juliar
12th May 2007, 10:46 PM
Wow ! The posts are such a huge help. I guess we're just afraid of surgery on his spine because it does seem like such a major op' He had to have surgery last year and the whole process was just awful. It wasn't a surgery related to his spine. It should of been relatively simple and it just wasn't. have little faith left in the system at this point, so starting with a whole new health issue - his kyphosis, is just overwhelming.

I appreciate your comments though. To attend the scroth clinic requires living there for 4 weeks, preferably in a block. We have 4 kids, so having to do that in itself is a hardship. Financially, it would be awful. It's hard not to clutch at straws when the information (in the daily mail) was put in such a positive light.

Thanks for pointing out some of the things to question.

Juliar
12th May 2007, 11:04 PM
just read the posts in regard to the scroth method on the other thread. Yep, I'm cancelling the appointment. Sounds like a complete waste of time.

Thanks guys !

GillyG
13th May 2007, 12:37 AM
I can totally understand you wanting to 'clutch at straws' and look into non-surgical routes for your son, especially if he has already had a traumatising experience with surgery for an unrelated issue.

However, it's worth bearing in mind how much easier it is to recover from surgery the younger you are. My scoliosis was basically ignored as a teenager and I was told nothing could be done, and again in my 20's. My self-image was always really low (not helped by being skinny, no boobs, glasses and curly hair - when straight bobs were all the fashion!!) Clothes never hung right due to my hips being uneven, and then later on the addition of a prominent rib hump made the situation even worse.

I was finally given the chance to have surgery last August at 49 years old, and I have never looked back. The recovery is taking longer as my spine was so stiff and stubborn, but I'm getting there and my self-confidence is at an all time high. Pity I had to get to this age to enjoy it :P

Sorry, I'm rambling a bit, but the basic message I'm trying to convey is that, although the surgery is a huge and frightening prospect, it could quite literally change your son's life - while he's young enough to enjoy it!!

Whichever road you go down, we'll always be here to support you. We have a wealth of experience between us, both of surgical and non-surgical regimes, so someone will always be able to help.

I wish you both the very best of luck.

Gilly xx

sins
13th May 2007, 12:15 PM
Hi Julia,
The best advice I can give you is to stick with your appointment with your consultant Mr. Dorgan.Until you actually have a firm diagnosis,type of kyphosis, degrees of curvature, there's a not a lot you can do!
Secondly, if he's not a candidate for surgery,i.e. it's not bad enough, then perhaps alternative therapies could come into play. But until you know exactly what you're dealing with, all you can do is wait.
I'm sorry it's taking so long to get your appointment.But at least you're actually doing something about it and your son will appreciate your efforts on his behalf.
Sins