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Sean240585
20th January 2009, 11:38 PM
Hi All,

I only found this website a couple of days ago but have found some really useful info in such a short space of time!!

Anyhow, I just wanted to let u all know that I went for a free consultation at the clinic today and have just got back to my house.

I just wanted to add my views as someone may find it helpful as I have reading other peoples. Fyi... I have actually booked a place on the course starting on this coming Monday 26th Jan.

On walking in, I imagined it to be quite a lot larger than what it was. I was very clean and everybody had to take their shoes off (the floor was lovely and warm though) lol!!

I saw many Thank You cards and reading them gave a positive 1st impression; although Im sure if they have had complaint letters they wont be on display!!

Anyhow, I was unsure about what the clinic was about and also although I knew I had Scoliosis, I didnt ever fully understand it (btw... Im a 23 yr old male who developed Scoliosis at 16). The surgeons I had seen didnt give half as much info in terms that I understood as the girl who did the consultation did. She was so helpful and kind and explained things really well.

I felt very comfortable asking the questions I wanted to and they provided answers to all.

My main concern about my back was my breathing and the pain and discomfort I am in. I feel confident that if I work hard with what they do, it will really benefit me.

I did feel a little under pressure to give an answer there and then but I dont know if thats because they knew I wanted to be on the course on Monday due to work reasons.

I have also book my accommodation through them at 100 per week for a single room. They also have accom which can have 2 people stay in as in a patient and parent. It is situated about 5 mins away from the clinic with good facilities around such as pubs serving good food ( I tried dinner and tea) and a large Tesco.

I must say though when we went into the office upstairs to pay the money and do forms etc.. I saw the Erika who has set it up. I would have thought she would have introduced herself slightly better and a bit of conversation as people have to pay a lot of money to go there. She was probably busy but I would have made the effort as there are only 3 people in the office! Im sure she will introduce herself on Monday!! lol

Luckily for me, my parents have paid for the treatment but all in all with travel and living expenses plus the clinic costs it will be in the regions of 4000. It is a very lot of money but only someone suffering with the condition could understand the benefits as my breathing is really bad.

Im sorry Im babbling on... nrly done!! I also feel that although this will have health benefits, I think my understanding of the condition will be a lot greater. I also feel a HUGE thing i will take from this is confidence and feel emotionally I will benefit a hell of a lot.

In summary, Im really excited but very nervous about the next month and was very happy with what I saw at the clinic. Also, my parents did come with me and they were very impressed; they were extremely sceptical about the clinic before hand!!

Well I thinks thats my essay complete now so looking forward to Monday a great deal and hope all goes well and cant wait to meet and befriend people in my situation.

I would like to think that someone will find something helpful out of the above but if anyone would like to ask any questions, Id be more than happy to help if I have the answer.

Cheers
Sean:p

GillyG
21st January 2009, 08:31 PM
Hope everything goes well for you Sean :) Keep us posted!

Simon
21st January 2009, 10:14 PM
Good Luck !!!

Lets us know the outcome !!

twizzlegirl
21st January 2009, 10:56 PM
good luck :) xx

Sean240585
22nd January 2009, 02:54 AM
Thanks everyone for the good luck!! Im sure that n my effort and their training will hopfeully make a difference to my quality of life. Will keep everyone updated on end of each week!!

Thank you
Sean:)

Sean240585
28th January 2009, 08:09 PM
Just to let everyonce know, I am into my 3rd day and still really positive about it!!

Sealy
28th January 2009, 08:26 PM
....but some doubt has crept in? ;)

Essi
16th February 2009, 08:07 AM
i hope everything is going really well there, it was a great experience for me.
everyone there is so lovely. :D

Sean240585
17th February 2009, 06:54 PM
Hi,

How fast does the 4 weeks go!!!

Well my course ends this Friday and definately feel it has been worth while.

As said above, the staff are lovely and you fit in and make friends so easily.

We will have our final consultations on Friday where we get our results.

From the way I feel, I know it has improved my posture and breathing... amazingly it has eliminated my pain and discomfort.

I now know that it is up to me to continue this work to keep my corrections.

I would say though, it definately effects everybody different so it is NOT a cure by any means.

It has given me a great understanding of my condition and helped me learnt how to deal with it.

They have also just opened a 2nd clinic in London.

If anyone has any questions, please feel free to ask.

Thanks
Sean

GillyG
17th February 2009, 07:51 PM
Very glad to hear you have had such a positive experience, hope you can manage to keep up the exercises at home :D

carolad
18th February 2009, 12:07 PM
Hi Sean

Thats brilliant you have found it to be such a benefit to you. I'm all for doing anything which makes you feel more in control of your life and makes the condition easier to live with. It sounds like you have a good sensible attitude to it all, realising the exercises won't 'cure' you but can help you live with the scoliosis. I think that the Alexander Technique does the same for me :D

Keep us informed of your progress once you get home xx

Sandman77
15th March 2009, 10:56 PM
so your concrete results sean?

aqz
4th March 2010, 06:55 PM
Hi all,

i went to the clinic today in london,i must say it seems very positive.I know even though they cannot give exact measuremet,but they do have some experience obviously.According to him my curve does not seem severe but hey i still wanna know for sure from an expert.Has anyone tried this clinic and how was it for them.

GloomCookie
4th March 2010, 07:07 PM
Hi aqz :)

I've moved your thread into the non surgical room as people who've been to SOS are more likely to see it here! In the meantime, have a quick search of the site for some first hand experiences of the place and some spirited discussion about their methods, I'm glad you had a positive outcome and hope you're feeling a little better about the situation now.

mark
4th March 2010, 07:47 PM
very wise of you to keep up your appointments with the experts

aqz
4th March 2010, 07:51 PM
yes defo i think today was just to see how they work

mark
5th March 2010, 12:49 AM
Nice one you sound like you have it all under control, as well as scoliosis sos i would also look at Schroth (true schroth not a hybrid) a clinic has opened in London and the Alexander Technique you can find AT if you google it

If you are thinking of going down the alternative therapy route then you do have a number of options available to you

Take your time before deciding, about the only good thing this curse we all have is the ability to take a little time to decide what we want and what is best for us

Mind dont take months deciding but you do not have to make any decisions over night and if we can save you a few pennies then in this current financial climate, well that has be good doesn't it

If you want my advice i would not look into claims about how good a treatment is i would look for published documents supporting those claims and try to get it on the NHS that will save you even more pounds

Mark

Simon
5th March 2010, 01:11 AM
Am going to be a bit blunt mate ... if you have the cash for a lets say a clinic that we have strong threads on ...SOS .. why spend the money on that first if you have the money go down the route that toni and mark and every other member has said and i will say it also phone up mr tuckers sec and self refreal to see him .. hes the best in the ountry in my eyes and he will tell you actuall whats next .. byall means ask about the clinic but at least you will get your cobb angled mesured probally have the best advice in the up .... paying money to them is a waste of time belive me .. do you really want to do excisies 23 hours a day .. or see some that knows best and will be cheper that going the clinic i know what i and a lot of member would choose .. good luck anyway

angie123
5th March 2010, 01:37 AM
Am going to be a bit blunt mate ... if you have the cash for a lets say a clinic that we have strong threads on ...SOS .. why spend the money on that first if you have the money go down the route that toni and mark and every other member has said and i will say it also phone up mr tuckers sec and self refreal to see him .. hes the best in the ountry in my eyes and he will tell you actuall whats next .. byall means ask about the clinic but at least you will get your cobb angled mesured probally have the best advice in the up .... paying money to them is a waste of time belive me .. do you really want to do excisies 23 hours a day .. or see some that knows best and will be cheper that going the clinic i know what i and a lot of member would choose .. good luck anyway

I don't want to interfere, but for someone who has a curve that is not large enough for surgery but is in a lot of pain - what other options are there besides alternative therapies? What will a scoliosis surgeon do for someone who doesn't need surgery? In Canada a scoliosis surgeon won't even see an adult whose curve is less than 50 degrees - because all they do is surgery.

Is it just this Scoliosis SOS that is so terrible, or all alternative therapies? I don't know anything about SOS because I am fairly certain we don't have it here.

I'm just asking because I'm in a similar boat - moderate curve, lots of pain, absolutely NO medical options.

mark
5th March 2010, 02:26 AM
Hi Angie

I don't think anyone is getting at one paticular clinic, in fact far from it every form of therapy has its place and i would not knock anyone for what ever way they choose to go

In this horrible painful life we lead we need to explore all options, i don't know whether Simon has had a bad experience of this clinic or not, or he knows someone who has i have heard mixed reviews and would not like to comment on them. I have had my say in the past and reading back my comments is hard because i was less than gracious.

in my post i just wanted to bring to aqz attention that there are many other alternative clinics out there alongside the traditional NHS route

Pain is a horrible thing to have to deal with, i don't know where about in the world you are (sorry i should have looked) but here in the UK we have the NHS which is free at point of contact (i know we pay for it in taxes) but at point of contact it is free

Now these alternative clinics cost a lot of money and its great to read reports from people who use them because it could save someone a small fortune' I know some of these therapies cost upward of 4 thousand pounds, now that kind of money is hard for the most stable of households to find so it is nice to read experiences from people who have used these clinics

The paticular clinic referred to has had some mixed reviews so maybe Simon has had or knows someone who has had a bad experience

I am sorry to read that you have so much pain, i can truly sympathise with you

I hope all that makes some kind of sense i am doped up on painkillers and its late

Amazed Jean
5th March 2010, 06:41 AM
Remember that no two cases of scoliosis are ever identical. Remember also to do what feels right to YOU. Do your homework first... asking lots of questions AND getting more than one opinion. Anyone worth their salt in scoliosis will be able to do an xray and measure your Cobb angle and might want to do a lung function series with a pulmonologist. They do what YOU think is right - You have to live with it. Keep us posted!

carolad
5th March 2010, 12:59 PM
If you are thinking of going down the alternative therapy route then you do have a number of options available to you

Take your time before deciding, about the only good thing this curse we all have is the ability to take a little time to decide what we want and what is best for us


Mark

Thats exactly the advice I would give! By all means explore the SOS route, but please don't rush into anything. Explore your options first before you commit yourself - these things are always expensive as Mark says, so you want to spend your money wisely.

I've had great results in using the Alexander Technique for pain relief - it doesn't promise to cure the problem (which is one of the things that appealed to me - you will find out there are lots of dodgy people out there promising miracle cures that never materialise!)but it has really helped with my posture and my pain levels. This is a really good website which gives more information and details of teachers in the uk: http://www.stat.org.uk/

Good luck with whatever you decide to go for, but please don't rush into parting with your hard earned cash!

curvyclaire
8th March 2010, 05:05 PM
I went for a consultation at Scoliosis SOS in London a couple of weeks back and also had one with Joanna Slup the same day to compare. They were both very professional, but I chose SOS as they are larger and seem to have more experience. While I was there I got chatting to some of the other patients. One woman has been doing treatment for 2years and goes back every six months for a checkup, she said that she is now painfree and her curve is 10 degrees less. Really hoping this treatment is going to work for me as I would love to get rid of my pain. Has anyone else tried it?

tonibunny
8th March 2010, 05:22 PM
Hi Curvyclaire, welcome to SSO :welcome2:

We have had members in the past who have been to both Joanna Slup and to Scoliosis SOS. They offer different treatments, in that Joanna Slup is a certified Schroth physiotherapist and thus teaches the Katherina Schroth Method, and Scoliosis SOS provide their own brand of physio called "Scoliogold".

Welcome again,

Toni xx

mark
8th March 2010, 06:54 PM
Welcome to SSO, i hope you enjoy our site and get as much out of it as i do, i'm sorry for the reasons that have brought you here but know you are i am looking forward to reading all about this scoliogold treatment. I have to say that we are hearing a lot of mighty good things about this clinic lately

Wow your friend is painfree and down to 10 degrees, what was she before, is that 10 degrees cobb angle or 10 degrees of there own measurements

I should have looked them up prior to my surgery for a 100 degree plus curve. I don't think even at his optamistic best my surgeon could have hoped to get me down to anywhere near 10 degrees and pain free,

:D:D sounds more like a miracle than treatment :D:D

Once again welcome to out slightly wonky world

Mark

Sue T
8th March 2010, 08:24 PM
Hi all,

i went to the clinic today in london,i must say it seems very positive.I know even though they cannot give exact measuremet,but they do have some experience obviously.According to him my curve does not seem severe but hey i still wanna know for sure from an expert.Has anyone tried this clinic and how was it for them.

Hello aqz
I've only just joined sso today (I'm a bit of a techniphobe so hope you'll all bear with me) It's probably due to being an 'oldie'.
I wanted to let you know that I have idopathic scoliosis- discovered when I was about 8years old- I am now 61years
of age(but a VERY young 61 year old!!!)
I've had all sorts of treatment throughtout my life- I have not allowed it to stop me from doing whatever I have set my mind at doing. I am married to a wonderful husband - who has been extremely patient when I've moaned about my back.
I discovered the SOS clinic in Suffolk (they've since opened up in London) and I really wished I had discovered the place when I was younger!
I have got my life back- 'though it's not without it's problems, I still have a few aches and pains but I am able to deal with them in my own way.
The exercises I was taught to do were 'bazaar' to say the least, but, what a difference, what an investment for me. Hard work, wonderful physios and on my return home (I was away for 4 weeks) so many people noticed such a transformation in my posture, I felt heaps better in myself- my breathing has improved, I was told I looked younger(I need that at my age) My mum proclaimed it a 'miracle'.
I now have my own little gym and have to exercise for 35mins everyday. Yes, it cost a lot of money and equipment had to be bought etc - but it was about the price people pay for a membership for joining a gym and I have my own private one at homefor the rest of my life!
I made new friends who understand exactly how I feel, I discovered a 'new' understanding of my condition- even after all these years, I actually gained a new found confidence and I am able to stand far straighter than I've been able to for years and for longer (without pain).
I am in control of my back instead of it controlling me!
I would also like to add that I think that all the advice that is and has been offered to you is wonderful and so supportive and I would say don't close any doors, there is so much more information out there, wish I'd had the opportunities when my scoliosis was discovered.
Would like to think that I've been of some help to you and perhaps somebody else out there!
By the way I've been offered operations on several occasion and I 'm really pleased that I've always turned it them down- I've worn plaster jackets-plastic jackets and a milwalkee(hated them).As I 've got older my pain was getting worse SOoo for me the BEST remedy has been the SOS clinic Erica Maude the founder (only about 21yrs now?) has scoliosis!
Good Luck
and remember you are not alone- it seems there are loads of us Su T x

GillyG
8th March 2010, 09:16 PM
Hello Sue :welcome2:

Thank you for posting your story and experience, I'm sure it will be of great help to others who are considering following the non-surgical route. I'm very pleased to hear how positively the exercises impacted on your posture and quality of life.

We would always advocate that members remain under the care of a scoliosis specialist, even if they follow a non-surgical route, since often they are young people at risk of rapid progression during adolescence - I think you might be out of that bracket now though :p :D

Jash
8th March 2010, 09:16 PM
i'm glad that there are positive outcomes from the treatment. We took our son to see both the clinic's in london. we did like Scoliosis SOS and seriously thinking of taking my son there. (only problem was they were very pushy for signing up even after explaining the situation school/work etc). has anyone had bracing with the treatment?

mark
8th March 2010, 10:20 PM
Sounds like Nirvana

My eye sight seems to be failing me these days so if i missed it i apologise, how much did you say it costs for this treatment

You see the last gym i joined was free to be a member and was then pay as you go

Cheers

Mark

Sue T
9th March 2010, 12:16 PM
Sounds like Nirvana

My eye sight seems to be failing me these days so if i missed it i apologise, how much did you say it costs for this treatment

You see the last gym i joined was free to be a member and was then pay as you go

Cheers

Mark

Sorry Mark I had no intention of 'misleading' anyone regarding the cost of the treatment at the SOS Clinic- I suppose I got rather carried away, I justify the cost to the price of an annual subcription to a gym to myself(I've actually never joined one! (SO what do I know?) too embarassed about my back!) I just wanted to put things in perspective, as I feel I now have an investment for the rest of my life.
I was just so thrilled at finding something that was so amazing for me after years of progressive pain I wanted to share my discovery with others who unfortunately have a similar condition! YES! it is expensive BUT for me I'm more in control of my life than I've been for years.
Regards Su T x

tonibunny
9th March 2010, 12:27 PM
Luckily there are plenty of options on the NHS if people don't wish to pay thousands of pounds to a private clinic. I had amazing results from a free NHS inpatient programme run by the Pain Clinic at my hospital - I spent three weeks doing intensive physio and hydrotherapy amongst other things. An advantage of this was that I was checked by a qualified spinal surgeon rather than just by the physiotherapists.

If anyone is in a lot of pain I can really recommend getting referred to a Pain Clinic in the first instance, and take it from there. They are run by doctors who are specialised in pain management and have more options for pain relief than the GPs can offer.

mark
9th March 2010, 12:48 PM
Hi Sue

Sorry if i came accross as sarcastic that was not my attention, i sometimes don't think before i write and i very rarely read them back

I'm pleased you have found a way to take charge of your scoliosis and you have had a positive experience with this clinic

Its just we have had an awful lot of discussions with this clinic who's owner pops up every know and again with a thread advertising her services and when asked a few questions ignores them all, which is that persons right as an individual but it did smack of blatant advertising and that is something that this site does not tolerate or accept

I hope you manage to control your pain through exercise and if you get any correction to your curve then that is a bonus, you are more than welcome here and i hope we can support you through any rough times you may have

Sorry once again if i came accross all arsey

AND WELCOME TO SSO

Mark

stana29
9th March 2010, 02:55 PM
Hello,

I would like to add my opinion about the Scoliosis SOS clinic and Joanna Slup.

As some of you know, my daughter Jessie has neuromuscular 59 degree thoracic curve a and a tumour wrapped around her spine and inside of her spinal canal. Because of this complexity, a surgery to insert the spinal growth rods in order to straighten her spine cannot be done without actually removing the tumour which in this combination (tumour resection + rods) never been done in the UK.

This complexity made me to explore alternative treatments and I am glad for it.

My daughter has been wearing Cheneau back brace for the last 14 months and her scoliosis has been stable, prior to this she wore Boston brace (measured for not casted) and her scoliosis progressed from 23 degrees to 59 degrees in 18 months. So I can say that every penny was worth spending on the Cheneau brace which unfortunately is not available on the NHS.

Needless to add that Cheneau brace in combination with visiting rehabilitation centres for children as well as adults is a norm in mainland Europe (Germany, Spain, France, Czech Republic, Slovakia, and Poland).

Children visit scoliosis rehab centres for 6 weeks every year and work hard on strengthening their tummy and back muscles weakened by wearing their back braces, where they swim, relax in Jacuzzi, receive massage, do yoga, Pilates etc. In addition, most of those centres follow methods such as Katharina Schroth, Vojta, Kubat etc.

Can somebody please direct me to a centre that offers something similar in the UK paid for by the NHS? Well, I haven't found any.

Anyway, to cut the story short, I do believe that Schroth method is an amazing method and anyone having an insight into how this method actually works will agree with me. The exercises are logical as well as thoroughly thought through.

My daughter is lucky enough to be taught this method by Joanna Slup in London and I cannot praise Joanna's dedication to my daughter’s physio regime highly enough. She regularly visits Germany and K. Schroth centre where she updates her knowledge. Anyone considering learning of this method, visit her and see it for yourself. Joanna is dedicated and her true motive behind her business is making you feel better not make money out of you.

We also visited the Scoliosis SOS centre in Ipswich and my honest opinion and feeling about this centre in not that great. I felt the pressure for signing up and all my questions were not answered, however when I spoke to the ladies exercising there, they could not praise this centre more.

It is difficult to make a choice, especially when high costs are involved but at least the choice is here and I am sorry some might not like this but what is NHS doing for children with scoliosis apart from a surgery? Not much, really! I asked numerous of times about physio for children with scoliosis (not suffering from pain) and the answer was that exercises don't help!!! Well, in my opinion (yes, I am not an expert and doctor by any means), exercise work in a way of strengtening you muscles that hold your back in tact, but the very limited NHS budget does not give our children much choice, does it? You tell me, why on earth would all those mainland countries send all scoliosis children to scoliosis rehab children to exercise and possibly avoid or postpone surgery if they believed it doesn't work???



Stana






Hi Curvyclaire, welcome to SSO

We have had members in the past who have been to both Joanna Slup and to Scoliosis SOS. They offer different treatments, in that Joanna Slup is a certified Schroth physiotherapist and thus teaches the Katherina Schroth Method, and Scoliosis SOS provide their own brand of physio called "Scoliogold".

Joanna Slup's clinic is registered with the CareQuality Commission, which regulates private healthcare clinics in the UK to ensure that patients are safe and get good treatment. From this year, all clinics must be registered with them.

Welcome again,

Toni xx

tonibunny
9th March 2010, 03:20 PM
Hi Stana,

It is great that Jessie has been doing so well with her Schroth. I believe Beanstalk's daughter has also been doing very well under the guidance of Joanna Slup :) You are (as far as we know) the only SSO members who have been to her, and both of you have given very favourable reports about her, which is very encouraging. She is certified by the Schroth clinics, continues to update her knowledge, and her clinic is regulated so patients are protected should something go wrong - this all sounds good to me!

My post here was in reference to adults who are suffering with pain, rather than children. There are a lot more options available to adults with chronic pain - and the three weeks I spent on the programme in Oswestry did include intensive physio, hydrotherapy, pilates, and yoga with an emphasis on building core stability and strength, as well as a lot of education about a variety of issues.

As you say, I don't believe anything like this exists for children, which is a terrible shame. For adults like CurvyClaire though, who have stable curves but are living with chronic pain, things are available on the NHS, and I do think it would be worth looking at these first in case help can be had for free before considering paying thousands of pounds privately.

Toni xx

stana29
9th March 2010, 04:55 PM
Hello,

It's great to hear that there are such treatments available for adults, however wouldn't that be great to have something like this for chidren in order to give them a change of working on their curves?

I agree it's wise to investigate the NHS treatments before going privately.

Beanstalk's daughter's curve has apparently improved so that's great news and Jessie's is stable which I guess gives us time to consider what to do next with her future complex surgery.

Stana x

cloudgazer
9th March 2010, 09:38 PM
Hi,
Ive been to Scoliosis SOS and can only echo post above. It helped enormously with pain and my posture's a bit better too.
Its interesting because at the moment I cant do my prescribed exercises (because I've had a minor operation), and I can REALLY feel the difference. My back is aching and creaking (yes creaking!) all the time! It doesn't do that when I'm doing the exercises regularly.
I find fitting in the prescribed amount of exercises (30 mins for most people but 45 mins for me :( ) into daily life difficult as I work long hours, but now I know what its like to be without them, I am looking forward to getting back into them.
I think its good to be open minded to all types of treatment, including surgery, so go with whatever feels best for you.
Good luck. :)

Sue T
10th March 2010, 01:36 PM
Hi Sue

Sorry if i came accross as sarcastic that was not my attention, i sometimes don't think before i write and i very rarely read them back

I'm pleased you have found a way to take charge of your scoliosis and you have had a positive experience with this clinic

Its just we have had an awful lot of discussions with this clinic who's owner pops up every know and again with a thread advertising her services and when asked a few questions ignores them all, which is that persons right as an individual but it did smack of blatant advertising and that is something that this site does not tolerate or accept

I hope you manage to control your pain through exercise and if you get any correction to your curve then that is a bonus, you are more than welcome here and i hope we can support you through any rough times you may have

Sorry once again if i came accross all arsey

AND WELCOME TO SSO

Mark

No worries Mark I have to admit that I was rather taken aback by your reply- however after your next reply to my explanation- I do understand thank you for your apology tho' you needn't have done that but thankyou and I accept with 'grace' (whoever she is???).
I really would like to point out that I am not a P.R. for the SOS Clinic. I just wanted to share my success with all of you SSO members, because I thought that it may help someone out there! I would also like to say that I would still advocate stronglyto anyone with scoliosis or a similar condition to seek out NHS expert advice at all times.
I had big discussions with my GP before committing to the SOS course and I was very sceptical that I would get anything from going, (I am a six hour drive away from Suffolk) also, would I actually be able to do the exercises or complete the course?
However I did mention in my original letter, that it was not without it's problems for me. Without going into too much detail and becoming 'a pain-in-the-back' - basically I have damaged my Latissimus Dorsi muscle (think I may have 'overstretched 'myself!ha! ha!) Any advice from anyone PLEASE? xx
Have been to osteopaths/chiropractors tried Bowen and also had a new xray and scan via a NHS physio consultant, who, incidently was wery impressed with the changes in my back.
Many thanks for bearing with me
Regards Sue T x
(would 'love' to use one of those 'smiley' things for all of you but I can't seem to work out how I can do that Yet)

tonibunny
10th March 2010, 02:04 PM
Hi Sue,

Are you under the care of an NHS spinal consultant (ie a doctor), rather than a physio? And has the Latissimus Dorsi pain been going on for long? Hopefully it's just a temporary pull rather than an ongoing thing.

Which hospital did you attend when you were younger, and do you know the degree of your curvature? It sounds like the Milwaukee brace worked well for you, as you had scoliosis at 8 and managed to avoid surgery - you did very well there! Juvenile scoliosis is often very progressive.

Toni

Sue T
10th March 2010, 07:06 PM
Thank you Toni for taking the time to reply.
I was signed off from my last consultant because he could not go any further regarding my pain pre SOS, hence
I don't see one anymore,I feel I've gone as far as I can with them. I have been offered op's and more braces/corsets- but having spent 5/6 years of my teen years in such things,and ,yes, they really helped me in those growing years. This was my reason for searching for something alternative and I found it and it certainly works for me, but, at the same time I think the exercise have triggered this pain in my Lat.D.muscle - I been back to the clinic several times and had my exercises revised but the pain is still oncoming (bit of a catch 22?) I thought that perhaps it would ease but its been over a year now, hence my visits to chiros etc. everyone wants to help but unfortunately don't seem to!
I'm very happy to work at it because now I feel the way for pain relief,for me, is exercise and I am trying to work through it! That's why I wondered if anyone in the forum
had any ideas?
You ask about any consultants I have seen Toni? I would imagine the names would mean nothing to anyone as I should think they have all passed away, I was very blessed to have seen someone who was top of the field in scoliosis at the time,dare I say in the 1950s - a Mr Griffiths from Manchester Royal he also had a big interest in a place in Owestry! Thank you for reading this.
Regards Su T x

tonibunny
10th March 2010, 07:36 PM
Ouch, do you know what's causing the pain - is it that the muscle is in spasm, or do you have pinched nerves underneath?

Have you ever been referred to a pain clinic, and tried things like trigger point/nerve blocking injections? There are plenty of nonsurgical options for pain relief that can be tried, but you need to see a specialist pain doctor rather than a physio for many of them. Do you take any painkillers? If your pain is neurological in origin, many of us have amazing relief from a drug called gabapentin. Similarly, amitriptyline can work wonders for muscle spasms.

It sounds like your scoliosis has been stable for years (otherwise it would have progressed a lot by now) so I doubt any surgeon would want to actually fuse your spine, but if you have a trapped nerve or bulging disc then a tiny surgery could help enormously.

If you're still in that corner of England, it might be worth getting a referral to the Pain Clinic at Oswestry. This is headed by a Consultant Anaesthetist called Dr Gaspar and he is brilliant. He can also get you onto their Functional Restoration Programme, which is 3 weeks of intensive physio, hydrotherapy and all sorts of methods which can really help.

Exercise is usually great for pain, but after all this time I think you should maybe see a doctor again, as you might be causing more damage rather than helping things :(

Sue T
11th March 2010, 07:01 PM
I can't believe how 'kind' you all are with your diligent replies - thank you once again x I will take on board everything you have said, unfortunately I am not in the Oswestry area.

I dont feel it's pinched nerves, everyone I've seen, talks about a 'spasm' I describe the pain like that of a 'stitch' that is relentless. However I shall perhaps seek out a 'pain clinic' I do know of one near to where I live, my GP has suggested I try it, so did the Physio Consultant, my other problem is I hate bothering people and feel that there are so many people far worse than me, so I feel a nuisance. You'd think at my age I'd be over all that, (a case of old dog -new tricks eh?)
Thank you so much once again Tonibunny
I hope that I will be able to have an opportunity to support someone
Regards Sue T :D

mark
11th March 2010, 07:23 PM
Ahh Sue, don't think that about your pain, i think its hard for people who do live with the pain we do to comprehend just how debilitating it is. They see us walking, talking, laughing running etc and think well they look all right so they all right and i think if we are told often enough that there is nothing that can be done for us and just get on with our lives we start to doubt ourselves

I am sorry that you are in the inbetween area where surgery is out of the question but you still suffer (not that surgery is a guarentee of no more pain).

I wish there was something more productive i could say or advice to give you. Sorry if this has already been mentioned but have you tried looking into core stability exercises or the Alexander Technique. If you search for Alexander Technique you may find some useful info

I am sure carold uses this technique and is very knowledgable about it

Mark

tonibunny
11th March 2010, 07:31 PM
Hi Sue,

Oh I'm so glad you know there's a Pain Clinic nearby! If it's a muscle spasm then relaxant drugs can help, or you can have trigger point injections if those don't work - I have had those and the results were absolutely amazing :D

Please don't ever feel that you're a nuisance. Chronic pain is miserable and you have every right to have help with it! Hopefully if you get the muscle spasm sorted then you'd be able to get back to your physio exercises again.

Good luck with the Pain Clinic, let us know how you get on :)

Toni xx

Sue T
12th March 2010, 01:03 PM
Thank you both to Mark and Tonybunny x
I shall pursue some of the ideas that you have put forward and I shall return! Sue T x:D

carolad
12th March 2010, 01:37 PM
Sorry if this has already been mentioned but have you tried looking into core stability exercises or the Alexander Technique. If you search for Alexander Technique you may find some useful info

I am sure carold uses this technique and is very knowledgable about it

Mark

Thanks Mark - this gives me a perfect excuse for doing my hard sell on the Alexander Technique :yay:

Seriously Sue - I have found the Alexander Technique to be very helpful in pain management. It has improved my posture so I put as little strain as possible on my wonky spine and pelvis. I've actually gained an inch in height since taking AT lessons because I'm not 'squashing' my spine the way I used to - I've learned how to stand taller and move in a way that puts least strain on my body. Someone told me recently that I walk 'like a ballet dancer' :D - and as someone who always felt incredibly clumsy and awkward, I'm really enjoying this new feeling of being able to move more gracefully :)

It has also helped me deal with pain on a psychological level - it teaches you how to 'let go' of muscle tension so your body naturally comes into a better alignment. So instead of thinking about the painful area and getting annoyed or upset about it (which just causes your tight muscles to tighten further), you learn how to accept the pain and 'let it go'.... I know this sounds really new-agey and waffly, but I promise it does help! I suppose its allied to things like self-hypnosis and meditation in that way. It doesn't always work of course - there are times when I'm lying there, doing my deep breathing and thinking about everything being relaxed and trying to let go - but there's this wee voice in my head going 'it hurts, I don't like it, its not fair!!!' but if I can get that voice to shut up, I can sometimes make myself feel better!

There is some really useful information and links to teachers in the UK at this site: http://www.stat.org.uk/

Just let me know if you want any more information - I'm only to happy to go on (and on and on and on and on!!!) about AT :)

mark
12th March 2010, 01:51 PM
Nice one Carol

I knew this little old brain of mine works sometimes

I know how passionate you are and i love reading your posts on it becasue it really shows that surgery is not always the answer

Thanks once again, now i am of to check out the links you provided

Take care

Mark

Dahne
23rd June 2010, 12:22 AM
Hi Sean,

I am planning to go to SOS in Suffolk in October. I've been doing a lot of research on the clinic and the area -- it seems lovely. How are you doing in maintaining your progress?

Tucker

alan003
1st July 2010, 06:02 PM
....but some doubt has crept in? ;)

i was thinking the same

AmandaS
22nd July 2010, 12:52 AM
My daughter went to Scoliosis SOS a few years ago. She kept up with the exercises for a couple of weeks then she gave up. I feel the whole thing was a waste of money and we are now left with hundreds of pounds worth of unwanted equipment.
You have to really believe and be dedicated to do the exercises everyday for the rest of your life!!
Amanda

mark
22nd July 2010, 01:31 AM
Hi Amanda

Welcome to the forum, sorry to read about your daughter, do you have any thoughts on what you are going to do know, are you under a NHS consultant, if not i strongly recommend that you ask your doctor to refer you to a specialist spinalist surgeon, it won't cost you anything and he/may be able to recommend some more managable exercises or refer you to a NHS physio

Sorry for what has brought you to the site but now your here i hope we can support you and your family on your scoliosis journey

Is there any chance of selling the stuff back to the place you bought it from, you may, at least be able to recoup some of your out lay

If i am not being too nosey, can you let us know the experiences that you had at the clinic and describe some of the exercises that your daughter needed to do to maintain the correction that she achieved

Once again welcome to the wonky world of SSO

Take care

Mark

ESMA
15th August 2010, 11:49 PM
Does anyone of you who have had an operation for scoliosis before had any experience with physiotherpy with the scoliogold method?
Thanks
stavroula:...:

mark
16th August 2010, 12:15 AM
Only what i have read on the internet

ESMA
16th August 2010, 12:33 AM
Does anyone of you who have been previously fused has any experience with the scoliosis SOS?
thanks
Stavroula

BeckyH
16th August 2010, 12:53 AM
i can't think of any of our members off the top of my head who have had surgery and then done this treatment. it certainly wouldn't be advisable in the early post op stages. i think your best bet is to phone the clinic or a practitioner and ask if they've treated any fused patients, and whether it would be possible to speak to them about their experiences.

the only thing which can anatomically and permanently alter a fusion for the better is further surgery, unfortunately (it is, of course, possible to break the fusion unintentionally through an accident or injury) but of course physiotherapies and alternative therapies can offer pain relief and coping strategies for some patients. if you're experiencing problems with an existing fusion, i would urge you to in the first instance seek the advice of an experienced scoliosis surgeon. and, especially if your fusion is damaged/compromised, i would steer clear of exercise therapies until the fusion is stabilised. at all times whilst undergoing alternative treatment, it is important to continue to be monitored by a conventional practitioner.

chris H
19th August 2010, 09:44 PM
I hope this works out for you, I would try anything if I thought it would help regardless of cost, Goodluck

ESMA
19th August 2010, 11:25 PM
Thank you very much. The first week is almost over. My muscles are collapsed but I think they start working now. I am a little bit afraid because I have the fusion and I am not in the same position with other patients but my fusion was 26 years ago and it is not damaged.
Hope it works out for me.

Sarajs
25th August 2010, 10:14 PM
Hi there, I'm really glad I found this post because I have just joined to ask precisely about the SOS clinic and whether it is worth the money.

I am a 29 year old woman, diagnosed with scoliosis but i think the curve is not too bad 17 degrees or so, I don't know all the details, I suppose because I've not had problems up until now. I used to go once a year until 18 to have xrays but the doctors wouldn't suggest anything and just sent me on my way. Now I have pain, I'm uncomfortable sitting, standing, sleeping and doing any kind of domestic chore and self-conscious because of the career I am pursuing. Doing a google search to find out what I can do to reduce this pain and improve my posture I found the scoliosis sos clinic and went to consultation in london - which cost 25. Yes the meeting was interesting but I can't help thinking at 3900 for a four week course it is stealing money! And I don't have it. I was wondering if I found a good Alexander Technique teacher and had one on one classes it might be cheaper and more beneficial? I really need to do something as I feel so uncomfortable now.

What do people suggest? Thanks , I'm grateful of any info and will continue to read the posts already here as just found there are more!

BeckyH
25th August 2010, 10:21 PM
hi sara, welcome to the forum :)

which hospital were you previously under the care of? i'm sorry you're having problems now, but i think it's worth you getting a referral to a scoliosis specialist for a number of reasons: firstly, so that you can learn more about the magnitude of your curve(s) - this is vital going forward, so that any progression can be assessed; secondly, a different doctor's opinion may help you; thirdly - it's important to be seen by a scoliosis specialist whilst undergoing any alternative treatment, as these are the only people qualified to measure your curve.

if you need help on where to seek a referral, we can provide that sort of information. seeing a surgeon doesn't mean you'll be having surgery, but it does mean you'll be accurately assessed.

tonibunny
25th August 2010, 10:22 PM
Hi Sara, welcome to SSO :welcome2:

I'm really sorry to hear you're having these troubles. I think it would be worth your while seeing your GP to get a referral to a scoliosis consultant (a doctor, not a physio or chiropractor) who can assess your back as it is now, just in case it has progressed at all since you last had an x-ray. It isn't likely, given that it was 17 degrees when you were a teenager, but it's worth making sure - especially if you decide to spend a lot of money having treatment!

All sorts of physio can help improve pain and posture, and you may be able to get referred on the NHS for this. Some of our members have found the Alexander Technique really helpful, so hopefully they'll be able to tell you about that.

Welcome again,

Toni xx

ETA Snap, Becky :D

mark
25th August 2010, 11:38 PM
You might want to pm carold, she is really into Alexanda Technique and knows loads about it, plus she's a really nice women as well

Mark

Sarajs
26th August 2010, 12:16 AM
Hello everyone and thanks a lot for all your speedy replies. I've never spoken to anyone about it before or posted on a forum!

I did actually go back (after many years of nothing!) to the Royal National Orthopaedic Hospital in London, Bolsover street a couple of years ago after finally getting a referral from my GP and because I had started to feel more pain and difficulty. During my childhood and teens that was where I had gone once a year for a check up. I did not see the 'main guy' there - the consultant that does the surgery that is, but another doctor and he just had a look and basically told me i'm ok and sent me off. I mentioned the scoliosis sos clinic as I had come across it then and he told me that he had heard of it and thought it wasn't worth it and overpriced. So I forgot about it until I went for the consultation the other day to find out for myself. (I am a bit annoyed though as a kid that I didn't get braces or more advice.) At the sos clinic they did tell me some more info about my back that I didn't know - they do a contour plot of your back from a photograph, they said the rotation was 8 degrees and some other measurements that I don't really understand.

Are there any scoliosis specialists anyone recommends? I think I will go back to my GP and ask to see another specialist doctor perhaps and see if they can get me some physio/alexander technique on the NHS? Or does anyone know a good alex technician in london? I've started yoga and pilates which helps but obviously they are general exercises. I am sure it is because of the scoliosis I also have so many knots on the trapezius', at the moment I feel like I need some support around the part that sticks out on my back, obviously I also have one rib more out than another and hip.

Thanks for your help again and I will take in to account what you have all said.

tonibunny
26th August 2010, 12:46 AM
Braces are generally only prescribed once a curve reaches 20 degrees, though there are lots of people who think that treatment should be started before then. It's difficult really as braces are hard to tolerate, and they are usually designed just to hold your curves rather than correct them permanently, with the goal being to prevent the curve progressing to 40 degrees (which is when surgery starts to be thought about).

If you get referred back to a scoliosis surgeon, do ask them if they can recommend to your GP that you get some physio or pain management on the NHS (there are special pain management clinics which you can be referred to; they can offer more options than the GPs can). The consultants themselves are mostly concerned with monitoring kids with scoliosis and doing surgeries, so if you're an adult with a subsurgical curve there is little they themselves can do. However, your GP will probably be more willing to refer you for physio or to a pain clinic with a letter from the consultant.

I had myofascial release work done by an NHS physio, specifically for spasmed-up trapezius muscles (quite a few of us here have that problem). It works well, though you need to keep up with stretching exercises to strengthen the muscle and keep it supple once it has been released. There are also certain drugs that work as gentle muscle relaxants, which a pain clinic may be able to prescribe.

Carolad is the member who you should speak to about the Alexander Technique, as she's had success with this. I'll let her know about this thread :)

Sarajs
26th August 2010, 01:08 PM
Oh thanks toni for this info, I will definitely do what you suggest and speak to my GP, You have made me understand a lot more about scoliosis than anyone else! I will get in touch with Carold also. And if anyone knows anymore about the scoliosis sos pls let me know.

Ciao

carolad
26th August 2010, 03:40 PM
I thought I heard my name mentioned - glad it wasn't anything bad ;)

Hi Sarajs - really sorry to hear of the problems you've been having, and even more upsetting when you feel you have no-one to turn to :(

As some of the others have said, I've found the Alexander Technique to be really helpful, both in improving my posture, and in helping me deal with the pain. My curves aren't bad enough for surgery so my GP just packed me off with a load of painkillers and that was the end of the story as far as he was concerned. I was determined to try to do something to help myself so started looking into alternative therapies.

The Alexander Technique was recommended to me by a friend who has the same condition - she also found it to be very beneficial. I've been doing it for over 2 years now and its probably the single most beneficial thing I've done to manage my condition (I also take prescription painkillers and have regular physio).

But because of AT, I have completely changed how I stand, sit and move so am now much more balanced. I've actually gained an inch in height because I stand taller and don't compress my spine the way I used to - so this is factual proof that it works!

Unfortunately, its not available on the NHS and its not cheap - I pay 40 for an hour's session. It takes time too, it certainly isn't a quick fix - and you need to be committed to it and think about it ALL THE TIME, at least initially. There is no point going to the lessons and then just reverting back to all your old bad habits. Of course in time, you will 'unlearn' your bad habits and develop new good ones so it does start to come more naturally after a while. But its not something you just learn for a year and then have 'got it' - its really a lifetime commitment to follow Alexander Technique principles.

The basic idea behind AT is that we all (non-scolis too) develop bad postural habits and tense muscles without even realising we are doing it. And it is these tense muscles which pull us out of alignment and then create all sorts of problems. So by learning to 'let go' of the muscle tension, your body will naturally come into a more balanced alignment. This is the difficult bit in a way, because you are not consciously DOING anything - its more a case of learning NOT to do things, if that makes sense? :???: I know it sounds a bit airy-fairy, but I promise you it works!

An additional side-effect I've found is that it has increased my general wellbeing and makes me feel more in control of my situation - I believe this is quite a common effect, it definitely has an effect on your mind as well as your body.

If you want more information, or want to find an AT teacher in your area, check out this site:
http://www.stat.org.uk/

And this is a good article on AT and scoliosis:
http://www.stat.org.uk/pages/kyphoscoliosisstory.htm

If you have any questions, or want more information, please don't hesitate to ask on here or send me a PM - I'm only too happy to go on about it, as everyone else on here knows!!

Take care and let us know how you get on x

mark
26th August 2010, 09:06 PM
I thought I heard my name mentioned - glad it wasn't anything bad ;)




Carol, Carol, Carol, i'm wounded how could you even think bad thoughts, you destroyed my illusion

lol

Dr Marky

carolad
26th August 2010, 10:32 PM
Carol, Carol, Carol, i'm wounded how could you even think bad thoughts, you destroyed my illusion

lol

Dr Marky
LOL...of course I wouldn't think bad thoughts...maybe just a wee bit naughty though ;-)

mark
26th August 2010, 11:40 PM
Phewwwwwwwwwwwwwwwww, hows Carol tonight i hope your not in too much pain, i know being on your feet all day can be hell for your back

Sarajs
27th August 2010, 01:39 AM
HI Carolad, thanks so much for your advice. I'm definitely willing to the put the hours in and commit to AT if it's going to make a difference but yes I do see it's pricey. I will do some research but at the moment I'd prefer to spend the money on AT rather than at the Scoliosis SOS centre. So I'll see how it goes. So what is your degree of curve etc? You can PM me if you like? I'd like to know if you are similar to me?

carolad
27th August 2010, 03:21 PM
HI Carolad, thanks so much for your advice. I'm definitely willing to the put the hours in and commit to AT if it's going to make a difference but yes I do see it's pricey. I will do some research but at the moment I'd prefer to spend the money on AT rather than at the Scoliosis SOS centre. So I'll see how it goes. So what is your degree of curve etc? You can PM me if you like? I'd like to know if you are similar to me?

Oh thats great, its definitely worth a go - and I really hope you will find it as helpful as I have :squeeze: One of the things I really liked about the Alexander Technique is that teachers don't make wild claims about curing your problem. In fact, improvements in posture and pain relief are almost a side effect of following AT principles - its not seen as the primary purpose. I'm always wary of places like the SOS centre that make all these claims - sure if it really was that easy to fix the problem, it would be much more widespread and scoliosis would be a thing of the past?

I've never actually seen a Scoliosis Consultant (usual story of being fobbed off by doctors...:() so I don't have an exact measurement. I've had x rays taken though and its been estimated to be around 35ish (very vague!) Anyhow, its well below the levels that would be considered for surgery, so its just a case of learn to live with it...

I'm guessing you've been told the same thing, so ANYTHING you can do to help yourself has to be a good thing. I think even the fact that you are doing something to help yourself is empowering - it gives you back some control over your life.

Any other questions, just ask! :D

carolad
27th August 2010, 03:23 PM
Phewwwwwwwwwwwwwwwww, hows Carol tonight i hope your not in too much pain, i know being on your feet all day can be hell for your back

Hi Mark

Strangely I find sitting gives me more bother than standing - I find if I vary my position frequently I can cope better. So it looks like I'm a very nervous person because I don't sit still and just continually pace up and down - luckily my colleagues are used to me!!

Sarajs
29th August 2010, 02:26 PM
Hi Carold, you've made me really excited about doing AT now! Just the thought of these 'side effects' makes me feel better. I'll let you know the results. Interesting to hear also about how you cope with your back too. Thanks again, Sara

carolad
30th August 2010, 10:53 AM
Hi Carold, you've made me really excited about doing AT now! Just the thought of these 'side effects' makes me feel better. I'll let you know the results. Interesting to hear also about how you cope with your back too. Thanks again, Sara

Oh good, I'm really pleased! I just know it has helped me a lot and I really want other people to be able to benefit too! :) Just do bear in mind what I said about it not being a quick fix - so please don't get disheartened if it seems like nothing is changing initially - I promise you, you WILL feel the benefit if you stick with it.

I'll be really interested to hear how you get on, so please come back and tell us! And don't hesitate to get in contact with me if you have any questions or want more information.

ESMA
31st August 2010, 11:54 PM
Dear Sarajs,
sorry to hear you have problems.
I am on my third week at the Scoliosis SOS London and I can tell you that it is very useful.
I have found out that I can do things that I thought I couldn't and also I have no pain and I have improve my posture, I had pain in sitting and standing. Although I have the fusion and a lot of my muscles were collapsed now I work my muscles and I feel much better. I think that it is different from any other physiotherapy because you work a lot of hours and you learn the exercises that you have to continue them at home 30 minutes a day.
Maybe you came for a consultation the time I was there and I saw you.
You can ask me more if you want to.
Stavroula

05kay
2nd September 2010, 02:10 AM
Dear Sarajs,
sorry to hear you have problems.
I am on my third week at the Scoliosis SOS London and I can tell you that it is very useful.
I have found out that I can do things that I thought I couldn't and also I have no pain and I have improve my posture, I had pain in sitting and standing. Although I have the fusion and a lot of my muscles were collapsed now I work my muscles and I feel much better. I think that it is different from any other physiotherapy because you work a lot of hours and you learn the exercises that you have to continue them at home 30 minutes a day.
Maybe you came for a consultation the time I was there and I saw you.
You can ask me more if you want to.
Stavroula

a bit silly question, but what type of exercise is it and what do you have to do
went there in june or july but can't afford it yet

Sarajs
7th September 2010, 01:56 PM
Hello, sorry only just saw this message, do you have a number stavroula? So I could ask you some specific questions.

modimaclac
23rd March 2011, 10:26 AM
When we discovered that our daughter, who was then 14 going on 15, had a severe double scoliosis, she was devastated, as she didn't want to have an operation to put a rod in her back, which would give her a rigid back for the rest of her life.

She is a very keen climber, at competition level, and didn't want to have to stop this sport, which she would have had to do if she had had the operation.

She looked for advice and help or at least comfort on various internet forums, and they only made her more depressed and panicky about the future.

The orthopedic specialist we saw was in "wait and see" mode, wanting to see her every six months, but without recommending physiotherapy or anything else to ease the pain and discomfort. Meanwhile, the worst curve, in the lumbar region, worsened, and the other one, higher up, lessened somewhat.

So I searched the internet, and found Scoliosis SOS; I contacted them on the website, and subsequently had a very detailed conversation with someone from the Clinic in Suffolk. Despite the cost (very high), we decided to take our daughter for a two-week treatment in August 2010, and then for another two weeks in December.

It was a heavy schedule, 5-6 hours a day, five days a week, but her back had begun to show improvement by the time we left.

Our daughter's perseverance (fuelled by her determination not to have an operation) has paid off : her posture has greatly improved, and she doesn't experience pain any more. We haven't yet had new x-rays done, but whether the actual curvature has diminished or not, her improved posture and the confidence she now has are most encouraging.

She is aware that she will probably have to do the exercises for many years to come, but she herself feels the improvement is worth the trouble and effort.

Because we had gone over to Suffolk from France, we couldn't bring back the most expensive and bulkiest equipment, the espalier, but we brought back the rest of the equipment, and we have made an arrangement with a physiotherapist nearby, where she goes to do her exercises four days a week, for 45 minutes to an hour. She has continued with her climbing, which exercises her muscles in a symmetrical way, and she recently won a trophy in a regional competition!

We really feel the results have been worth the expense, and our daughter is pleased and encouraged, and determined to persevere, though admittedly she sometimes has to force herself to go and do the exercise session.

We found the Staff at the Suffolk clinic, in particular the therapists, very warm, friendly, and helpful, and our daughter formed friendships with some of the youngsters under treatment with her.

We will be returning for a check-up in June, by which time shen will have had new x-rays done, and will have seen the orthopedic surgeon again too.

I would recommend this treatment, though it is very expensive, but only if the child or adult is personally motivated to follow through with the exercise programme.

Otherwise it would be like consulting a doctor for a serious problem, and then not taking the medicine he prescribes. In that case, if the illness doesn't improve, one can't blame the doctor. If one had a chronic illness, which required taking medication for the rest of one's life, one would do that, not so? Well, this is the same kind of thing, only the prescribed remedy is regular exercise, and not some kind of pill to swallow.

jnt
23rd March 2011, 11:08 AM
What is the minimum age for treatment does anyone know? Can a child be treated while wearing a cast?

mark
23rd March 2011, 11:18 AM
She is a very keen climber, at competition level, and didn't want to have to stop this sport, which she would have had to do if she had had the operation.

.


As you say grit and determination is needed to undertake this course of therapy as is the case with surgical intervention

having the operation does not preclude you from climbing or an other out door sport for that matter, i'm just getting back into climbing, walking, mountaineering and football, hopefully next year i'll be back to the alps ready to tackle the Matterhorn and the Giants Tooth.

It may take a while to get to over the op, but if you have the grit and determination anything is possible

Welcome to the site and i'm pleased you had a positive experience

Please feel free to post the exercise regime your daughter has to complete, it would be interesting to read

Mark

modimaclac
23rd March 2011, 11:45 AM
having the operation does not preclude you from climbing or an other out door sport for that matter,

Perhaps it doesn't in the long run, but she certainly would have to interrupt the momentum she had gained in her competition schedule, been out of commission for a number of months, and would have had to make a big effort to get back up to speed again.

mark
23rd March 2011, 12:04 PM
Yes thats true, it takes a long time to recover from surgery, i'm pleased you found something that works for your daughter, i would imagine the exercises would also help to strengthen her core muscles so that can only benefit her climbing.

My point, probably not very well put, was having surgery would not prevent her from climbing

tonibunny
23rd March 2011, 12:10 PM
Hi Modimaclac, welcome to SSO :welcome2:

Please could you tell us more about the exercises that your daughter does? A description of what this technique involves would be helpful to a lot of people :)

Toni xx

modimaclac
23rd March 2011, 01:21 PM
I'll have to get my daughter to describe the exercises, because I don't know the routine myself.:)

Angela
23rd March 2011, 01:24 PM
Hi and welcome to the forum Modimaclac from another family living in France.
We are in central france, our daughter is being seen at the childrens hosp in Tours.

Glad to hear the course in Suffolk is working for your daughter, shame there isn't anything like that in France.

You said your daughters specialist was reluctant to recommend physio. We were planning to ask for some for our daughter at her next visit did you have to go private or did you get a referral from someone else?

Best wishes
Angela

modimaclac
23rd March 2011, 03:53 PM
Hi Angela,

We are in La Rochelle, and it was our GP who recommended a pediatric orthopedic specialist at the hospital. The specialist didn't suggest any treatment at all. The first two times, he just said to come back in six months, with a new x-ray, and the last time, he said to come back in a year's time, which will be in June.

Our physiotherapist, when I showed him her first x-rays, said that such a severe scoliosis could only be treated by an operation. He didn't suggest any exercises or massages or anything.

When someone suggested that we take our daughter to a chiropractor, I asked the specialist's opinion, and he said it couldn't do any harm. But this chiropractor turned out to be a real quack, who did some mumbo-jumbo while waving his hands over her, so we didn't go back.

I also asked the specialist what he thought about the Scoliosis SOS treatment, printed out a lot of stuff from the website, and he said "go ahead, and if it's good, maybe we can introduce it in France" (!).

Our physiotherapist, when I called him from England to ask him if we could arrange for our daughter to use his equipment, said "but why didn't you talk to me about what you were going to do? There's a centre in Lyons which specialises in treatment of scoliosis!"

However, when I looked on that centre's website, there was a lot about evolution, and how we shouldn't be surprised that we have scolioses, because fish have them too, and as we are descended from fish, blablabla.... But apart from that, it talked only of braces and operations, nothing about exercises or physiotherapy.

So none of the treatment or travelling or anything has been reimbursable by the CPAM. However, once our daughter started going to the physiotherapist's rooms to do her exercises (for which he didn't charge us, since he wasn't working with her as a patient), he found out that with a curvature as severe as hers, she could be eligible for a 100% reimbursement of medical expenses... except it doesn't work for Scoliosis SOS treatments, but for any treatment, physio or anything she has in France.

Strangely enough, the orthopedic specialist at the hospital didn't even mention this possibility!

All the best!

Angela
23rd March 2011, 05:23 PM
Hi again, thanks for the reply.

Our daughters treatment including brace is all covered too by the CPAM, I'm assuming physio would be too if they agree to it.

She had regular 6 month check-ups and x-rays and now goes yearly as her growth is complete.

It sounds like your daughter is doing really well with her exercises, it will be interesting to see the improvement in the next x-rays. I'm surprised though no treatment was offered to you by the specialist, do you mean surgery as well?

I'll have a look at the scoliosis treatment centre in Lyon, sounds interesting.

Angela

modimaclac
23rd March 2011, 05:38 PM
The surgeon was just waiting from one visit to the next, to see if the curve worsened, but always with the sword of Damocles of the operation hanging over her head!

The CPAM accepted the application for 100% reimbursements without a quibble, so anything we do from now on will be fully reimbursed. Pity we didn't know about that before we went to Suffolk, because we could have applied for that to be at least partly taken care of.

modimaclac
25th March 2011, 10:13 AM
she said that she is now painfree and her curve is 10 degrees less.

@Mark: I think you read this too quickly: curvyclaire didn't say her curve was down TO 10, but that it was down 10, which I take to mean "10 less than before"...

mark
25th March 2011, 02:23 PM
Can i ask why are resurrecting a post i made over a year ago. I noted the other day you were spending a lot of time searching on my name

mark
28th March 2011, 02:07 AM
two threads merged as they both discuss the same business

modimaclac
30th March 2011, 11:19 AM
Can i ask why are resurrecting a post i made over a year ago. I noted the other day you were spending a lot of time searching on my name

Sorry, I didn't notice the dates.

I'm not researching on your name, you just happen to have contributed to the threads I'm interested in...

mark
30th March 2011, 12:31 PM
I was curious as to why, out of the almost 11 thousand posts i have made, you picked on that one

Because if you were wanting to know a little more about me check that thread out



http://www.scoliosis-support.org/showthread.php?t=5032

modimaclac
30th March 2011, 03:36 PM
Mark, I am sorry for offending you. I certainly wasn't trying to find out about you, I was reading through this whole thread about the Scoliosis SOS Clinic, and I just noticed that you had got the wrong end of the stick in what curvyclair had written.

modimaclac
1st April 2011, 11:19 AM
In answer to those who asked about the price of treatment at the Scoliosis SOS clinic in Suffolk : we paid the equivalent of 2950 for the four-week treatment.

Added to this, we rented a cottage in nearby Woodbridge, as the accommodation nearer to the clinic was full, but the price was similar to the clinic's places. (We brought our daughter for two weeks in August, and two weeks in December 2010. The rent was a bit cheaper in December.)

mark
1st April 2011, 02:43 PM
Hi

I didn't get offended at the post, i guess you didn't realise the thread was a year old, i linked you to that post so you could see how surgery sometimes is the only option, no amount of exercise could ever remotely hope to reduce the size of my curve

sometimes i get frustrated when i read about how wonderful these clinics are and how bad surgical intervention is.

It almost like i am being made to feel seedy or dirty in some way for having had a surgical intervention.

If this clinic can perform miracles then why is the NHS not banging its door door to refer us sufferers

If this helps sufferers then great thats fantastic i have no problems with it but the misinformation that is put out about surgical intervention needs addressing and scaremongering about surgery is unhelpful (not that i am accussing you of this) i am talking here generally about stuff i have read here and on other websites

take care

Mark

modimaclac
1st April 2011, 03:05 PM
Hi

no amount of exercise could ever remotely hope to reduce the size of my curve.

sometimes i get frustrated when i read about how wonderful these clinics are and how bad surgical intervention is.

It almost like i am being made to feel seedy or dirty in some way for having had a surgical intervention.

If this clinic can perform miracles then why is the NHS not banging its door door to refer us sufferers

If this helps sufferers then great thats fantastic i have no problems with it but the misinformation that is put out about surgical intervention needs addressing and scaremongering about surgery is unhelpful (not that i am accussing you of this) i am talking here generally about stuff i have read here and on other websites

Mark

Dear Mark,

I certainly would never, never judge you or anyone else who opts for surgery, especially when their curve is really severe. And I do not see you or anyone who does have surgery as seedy, dirty, or second-rate in any way at all. God forbid! That thought never even crossed my mind!

I can only speak for my daughter's situation, as she was so dead set against even contemplating surgery, which was what she had been told was the only solution for her, and was getting panicky and depressed at the thought of it, that I was mighty relieved to find a solution which suited her and her situation.

The Scoliosis SOS clinic has never ever claimed that her back could be completely returned to normal, and they do stress how important it is to keep doing the exercises regularly and on a long-term basis, which is no worse than someone who has a chronic illness, and has to be resigned to taking medication for many years.

What is important is to find a treatment which suits each individual situation, reduces pain and allows people to lead a full life, isn't it?

I have a cousin in West Sussex whose daughter has scoliosis, and while she was interested to hear about my daughter's treatment, she and her daughter are quite satisfied with the brace she has to wear, and with the prospect that she might eventually need to have an operation. We can share our experiences without feeling judged or pressured into doing likewise.

Be at peace, dear Mark, and have a wonderful day!

Kind regards

mark
1st April 2011, 04:23 PM
Please accept my apologies if i am or have been a little over sensative, i have lived with this for 40 years

modimaclac
1st April 2011, 05:12 PM
Please accept my apologies if i am or have been a little over sensative, i have lived with this for 40 years

Apology most readily accepted!

Faye
16th October 2011, 10:53 PM
Hi all,

It has been fascinating readding all your posts on this thread, but I am now even more confused than ever!! I was on the waiting list for surgery, but have backed out after been told about how ill I will be after surgery. I have two young children and any risk through surgery I take will be their risk not mine.
I think I was hoping to find some magic wand on this thread, which I know is stupid. I now feel quite lost and uncertain what to do. Blahhhhh!

Thank you to everyone who posts on here, I feel I have taken another step in my acceptance of it all.

Thanks

Faye

Sandman77
30th October 2011, 11:33 PM
I sugest going to Germany for Schroth Theraphy...

stana29
6th November 2011, 08:43 PM
http://www.newsshopper.co.uk/news/9345816.Beckenham_scoliosis_patient__a_new_woman__ after_finding_new_treatment/?ref=la&ref=erec

I really believe in the Scoliosis SOS centre. My daughter did 3 week session there are all very dedicated employees there.

GillyG
17th November 2011, 01:08 PM
we've also just transferred up to Sheffield, Mr Ashley Cole, who has been excellent

Mr Cole is my surgeon - he's lovely, isn't he? Very honest and straightforward, always takes time to answer questions (and isn't afraid to say so when he doesn't know the answer) and has quite a wicked sense of humour too ;):D

Good luck with the Spinecor. Even if it doesn't manage to stave off surgery indefintiely, it should give your daughter a few more precious 'growing years'. Plus it will still allow her muscles to be active, which is a big advantage over the hard braces.

stana29
26th November 2011, 11:05 PM
OMG! That is awful, I know my daughter might end up having surgery one day, and I know the brace she is wearing might not be the best one out there for stopping her curves but I am 100% sure she is getting the right treatment from Doctors who have a wealth of hundreds of years experience behind them and not some quack who is making a lot of money from some very scared parents and screwing up their lives and bodies in the process>:|>:|>:|

I'm really sorry - rant over.

Hi, may I ask what's the brace your daughter is wearing?

Round The Twist
27th November 2011, 12:19 AM
Yes, of course, my daughter is wearing a TLSO brace made at the RNOH, she was cast for it and the chap who made it was very particular! :)
So far this is her second brace as she outgrew the first one in 6 weeks, it has reduced her thoratic curve by 10 degrees and her lumbar curve by 3 - 5 degrees, she is stable at 33degrees T & L :fingersx: Hopefully it will stay that way until our next appt in Feb 2012 & beyond.

I'm really sorry to read about your daughters Diagnosis of the Chiari Malformation and Syringomyelia.
We haven't investigated the cause of my daughters Scoliosis as I have so far assumed it is hereditary as I have it too, but I don't know why I have it either, suffice to say in my 23 years of treatment I have never had a full spine MRI, although I did have a Myelogram in 1991 which was pre MRI and I believe that was designed to show up major problems with the Spinal Cord.

stana29
1st December 2011, 10:15 AM
Be sure.
Do not just believe in reputations, or that a private fitting is better, or that a reputable NHS hospital will not be negligent.

I learned my lesson! Now, I double check on everything.
All the best with your daughter's brace treatment.
Stana

Hope9
15th November 2013, 01:53 AM
Is this company trustworthy or not?