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Old 31st March 2013, 09:12 PM
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lauraroberts79 lauraroberts79 is offline
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Default Advice would be great

hey guys, i'm new to this I don't usually post but I could really do with some help and advice from you guys who understand ,
I've had idiopathic scoliosis since i was a teen but never went to doc until I was 21 which was then I was told I had a S shaped curve and it won't get any worse and just carry on as usual! been back to docs since for various reasons to do with back but no one was really interested just said theres nothing you can do!
Well im now 33 and yes it has got worse and I have pain 95% of the time which I just deal with I got to a point before xmas where I thought I really need to deal with this I have 3 children and it's painful to bath and generally play with kids! so off to docs I went same attitude 'what do you want me to do!!' I had x-rays again which doc read me report after, and said I don't know what you expect from these x-rays as it confirms what you know already, with that I got bit stressed so she said how about a physio, I saw physio who immediately said I need to seek referral as my right side of my back is so tight and full of muscle and my left side barely has muscle at all so been slowly building muscle and trying to reduce amount on right side, she has been great just simple exercises have allowed me to get a decent nights sleep -most of the time, I went back to docs and had to stamp my feet and push for a referral to a scoliosis specialist I said i'd just had enough I wanted to speak with someone who understood scoliosis finally I got my app at the RNOH, I was so pleased as I was getting to the point that I thought am I really just moaning for no reason, am I pushing for something that is really not that bad, well had x-ray at RNOH and was so pleased that these where done standing up I could never understand why in the past these where done laying down? I saw doc and he said my cobb angle is at 53 degrees and my curve has sort of changed to more of a c shape as bottom is just slight now, if I wanted surgery he'd do it but it won't take the pain away it will make me stiff and could cause endless complications I was grateful for his honesty he's sending me to physio there and has given me 6 months to think and make a decision! I am of a mind that if I can control the pain the way I do could I just live with it? he did say it'll most prob get worse as it has done the last few years, and also said scoliosis is not painful, well i know that but if I didn't have scoliosis my muscles wouldnt be behaving the way they do and I wouldn't have the amount of pain I do, I do dislike my back ALOT!! my spine has rotation too and therefore my ribs have disappeared from my stomach and are now protruding through my back!! I am doing yoga to build up them core muscles as I do have a bit of hope that a good core strength may possibly pull my spine back up?? a bit...maybe....I live in hope anyway does anybody have any advice or anything??? I just dont want in 10 years time for my curve to decrease more and surgery will be of a higher risk and longer recovery and I dont want to say I wish i'd just done this 10 years ago!!! my youngest child is only 20 months old so I know if I do go for surgery it won't be for atleast 18 months,
Is there any alternate therapies that anyone has tried?
Thanks for listening to me babble on but I don't know anyone who has scoliosis and my family try but just don't know what or how I feel.
Thanks again
Laura
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  #2  
Old 31st March 2013, 10:09 PM
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tiffany.m tiffany.m is offline
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Default Re: Advice would be great

Hiya,
Sorry this is going to be a really short reply because I'm brain dead at the moment. Main things that stick out to me is what doctor did you see at Stanmore because honestly they can't say surgery won't take away the pain or make you tight as far as I'm aware, unless there's complications it should only be known post op I believe.
Tiff x
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I'm Tiff, I'm 17, my consultant's Mr Gibson at RNOH Stanmore and I was diagnosed in November 2011 and I had my spinal fusion October 3rd 2012 and am now fused T2-T11 with amazing correction (60T/40L to 30T/40L).
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Old 31st March 2013, 11:00 PM
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Default Re: Advice would be great

Hi Laura, welcome to SSO

Sadly, doctors are never able to 100% guarantee that pain will be reduced after spinal surgery. This is because the surgical process causes scar tissue which may itself end up contributing to pain. Your surgeon should be able to give you an idea of whether they feel surgery would likely help you or not, and it sounds like they don't advise it in your case.

However! Don't panic, there are lots of nonsurgical methods for dealing with pain. Physio is the main one, but you do need to see a physio who understands scoliosis. Other methods include various steroidal injections to help relax muscle spasms or block nerve pain, and there are a whole range of painkillers that you may be able to take - there are different drugs for different types of pain (ie muscle spasm pain, nerve pain, etc). If pain is your main problem it would be well worth asking if you can be referred to your local Pain Management Clinic, as they can usually offer more methods of pain control than your GP or regular physio can.

If you manage to break the pain cycle via physio or other methods, you might be able to keep it at bay by swimming or doing regular exercises to help maintain your core strength (your core stabilising muscles act like a sort of "internal corset", supporting your lumbar spine).

Hope this helps! Welcome again

Toni xx
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37 years old, diagnosed with infantile idiopathic scoliosis at 6 months old with curves of 62(T) and 40(L) degrees. Casting and Milwaukee braces until surgery at 10 - ant release/pos fusion T1-T12, halo traction. Post op cast and then TLSO. Further surgery at 18 (ant release/pos fusion extended to L3 to include lumbar curve, costoplasty) and 25 (another costoplasty). Fusion extended to L4 at 33 (XLIF with 4 pedicle screws and two short rods). Pre-op curves: 76(T) and 70(L). Post-op curves: 45(T) and 35(L). Diagnosed with Ehlers-Danlos Syndrome aged 34; scoliosis almost certainly due to this rather than being idiopathic.
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Old 31st March 2013, 11:02 PM
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GillyG GillyG is offline
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Default Re: Advice would be great

Hi there

Please tell me it wasn't a scoliosis specialist at Stanmore that told you scoliosis doesn't cause pain?? No surgeon will guarantee that surgery will take away the pain since it's never an absolute certainty that the pain is caused your curved spine. However, it's exceedingly likely to be the main cause and the vast majority of us have found that surgery has made a huge difference, even if it doesn't disappear completely.

You could always ask for a second opinion, either at Stanmore or elsewhere, it sounds as though whoever you saw wasn't entirely forthcoming.
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Old 1st April 2013, 08:54 AM
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Default Re: Advice would be great

Hi,
I'm 33 and was diagnosed at 15, I chose to leave it thinking it would go away, wouldn't get worse, that I could deal with it. But unfortunately for me my curve got worse, I ended up with a double curve and a huge rib hump. Thankfully I didn't suffer huge amounts of pain, god knows how coz my spine was bad!! At 15 i was very harshly told to have the op and the chances are you'll end up in a wheelchair or don't have it and deal with a hard painful life later on. that didn't go down well being a teenager!so I buried my head in the sand and got on with life.
when I was 25 I went to a different local hospital and was told as I wasn't in severe pain,although it was bad,surgery wasn't recommended, there was no need if I wasn't in pain. So again I just carried on trying to cover up my rib hump and getting on with life as best I could.

I decided last year to get rechecked, a friend of a friend recommended RNOH Stanmore which I didn't even know existed! Thank god she did! To see a scoliosis specialist as opposed to orthopaedic docs at the local hospitals was a breathe of fresh air.
I chose to go through with surgery, and have no regrets. When I met my surgeon he said naturally my curves will change by a degree a year due to gravity. I always knew it would catch up on me one day and that I had been quite fortunate not to suffer with pain like others do. I hated the way I looked and decided to do something about it before it got worse. I instantly felt at ease with my surgeon, for the first time ever someone wanted to help me and I felt 100% sure I could trust him with my life.
It was a difficult decision, I wasn't in any real pain just the odd ache but nothing unbearable, I lived my life pretty much as I wanted to, I had got very good at covering my rib hump up, when I told work when I got my surgery date they didn't have a clue anything was wrong with me and I've worked there nearly 15 years!!

I'm still recovering but every day is getting easier. Some days have obviously been tough, I have an amazing correction better than I ever thought possible.
I have no regrets waiting till now, for me now was the right time to do something about it. I have been able to live my life, hold down a good job, buy my own house, get my life set up as I wanted, I'm still young enough to cope and recover from surgery, yes my curves got worse but medical advances since I was 15, in my personal opinion, far out weigh the negatives of waiting. When I was at Stanmore, I was told I would be in a min of 3 weeks, I was the last one admitted on the ward, and the 1st one discharged after 2 weeks! My surgeon and his team were amazed at how quick I responded and I was surprised they let me home so soon, especially after having 2stage surgery. There were 8 of us on the ward, all the other ladies except 1 was older than me, and from what I saw and they said of their surgery they found it harder being a bit older.

Good luck with your journey, you've come to the right place for advice and support, this site and its members is amazing

If you ever want to chat feel free to PM me

Kerry x
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34 year old, diagnosed @ 15 with 75* curve, progressed to double curve 110* and 60* by time of surgery.
2stage surgery under Mr Lehovsky @ Stanmore aged 32- Anterior 16th Jan 2013 and Posterior 22nd Jan 2013. Came home 30th Jan 2013. Fused t1-t12.
I am very thankful to Mr Lehovsky, Hanny registrar, Dr Inyaki and the rest of guys at RNOH Stanmore for taking such good care of me and giving me a chance to improve my life.
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Old 1st April 2013, 09:24 AM
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Default Re: Advice would be great

Thanks for your replies yes it was mr molloy at stanmore who I saw and he said my curves warrant surgery but as I have young children maybe its just not right at this time as ill b recovering for a while, I'll be going to physio there just waiting for appointment, He said if I wanted the surgery because of my appearance he'd do it without hesitation but because of the pain he said that wont change just be in different place, I'm worried that in the last few years my rib hump has become more obvious and I hate it and am so conscious of it and that its going to get worse I try to avoid bending in front of people as not everyone knows I have scoliosis I have learnt to cover it well but summers coming.....apparently and it's this time of year I dread!
I've researched all sorts of alternate therapies ie. feldenkrais, theraflex, schroth method it just terrifies me that if I start playing around with my spine will I just make it worse! I keep active and exercise regularly and that's not helping it from deteriorating, I suppose I'm just fed up want an easy way out its all so much hard work! Sometimes I just want to curl up on the sofa and read a book but I have to think of which position to sit in to cause least pain before I can even do that!
My curves are nothing in comparison to a lot of people I've read about
Sorry for the rant
Laura
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Old 1st April 2013, 06:33 PM
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tiffany.m tiffany.m is offline
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Default Re: Advice would be great

Hmm. Surprising that Mr Molloy said it to you...

I think the thing with surgery is you have to be aware of the extremely long time it can take to recover. I'm 6 months post op on Wednesday and do still feel restricted and stiff towards the end of the day a lot however I think once the weather improves it will be different.

In regards to the young children, Vicki had surgery 6 months ago and her daughter is 4 I think and she had discussions with our surgeon (we both see Mr Gibson at the RNOH) about this fact as Mr Gibson has a son who's about 4 I believe.

Essentially, I had a reg tell me surgery wasn't an option and Mr Gibson put me in the grey at my first appointment but I believe it was the right thing to do, although mine was more about aesthetics.

All I can say is if you do have the surgery, be prepared to put in the work afterwards to recover

Tiff x
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I'm Tiff, I'm 17, my consultant's Mr Gibson at RNOH Stanmore and I was diagnosed in November 2011 and I had my spinal fusion October 3rd 2012 and am now fused T2-T11 with amazing correction (60T/40L to 30T/40L).
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Old 2nd April 2013, 12:36 PM
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Default Re: Advice would be great

Thanks tiff,
Yes the length of time for recovery does indeed scare me, and I understand a lot of hard work will b involved if I do opt for the surgery, even more so due to my age, I'm worried that if I wait and have surgery later on maybe 5/10 yrs time it'll be even harder to recover
I didn't officially see my molloy I saw a lady whom I can't spell her name who was lovely and said she worked along side him, but mr molloy popped into speak to her about something else but kept looking at my X-rays then gave me a quick once over asked a few questions, told me I was too old really, then said he'd happily do the surgery if I wanted it doing as the curves warrant surgery but he said not to expect the pain to be gone it would be different and I would be stiff, with that he asked for an MRI some physio and to go back in 6 months as kids will be older and I would have had a chance to think,
I was really grateful that he 'popped in' and was so honest I liked him as a person and did sort of get the impression that at this time just to use pain management and see how that goes, but its the whole age and the curves getting worse that scares me, it is so much more noticeable these days, and I'm very conscious of it,
Thanks Laura
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Old 2nd April 2013, 05:27 PM
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Default Re: Advice would be great

I am so sorry you have to go through all this especially while your children are young. But i would opt for sooner as opposed to later. My lung function is so bad I am on full time oxygen. That really limits everything I do. I feel like it has happened because a decent surgery was not available for me while I was young. Another factor was our moving about the country for my husband's job. I never met a Scoliosis Specialist until I was in my 50's. There were other offers butthey were not sure what they offered but they were just Ortho Docs with no experience with Scoliosis or they said I would be hospitalized for 6 months and flat on my back for 12 months ! (It was the Dark Ages!) By the time I reached my 50's my lungs were totally compromised! So DO NOT WAIT forever and have some lung function tests done to know where you stand. Also if you do....tell them to use your arm span as your height so the tests are scored correctly. (I lost over a foot in height to scoliosis but my arm span says I should be 5'6" tall instead of 4'5". I do wish you all the best and will say an extra prayer for you.
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I am 61 years old and the resident SSO fossil. I live in Oklahoma,USA with my husband Allen. We have one daughter Jae and she has three kids.Our grandkids are: Aidan is8. He's the one pictured in my current avatar. Jenna Jean is 7 and Ryan Allen is just 4 It's full time chaos here! I was diagnosed in 1965 at 14 years with Kyphoscoliosis and 2 curves measuring 68 and 63 degrees. My last measurements were in 2004 at 155, 88 and 55+ degrees. I have never had surgery or bracing so I now am on full time oxygen and use a Non Invasive Ventilator at night. at night.
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Old 2nd April 2013, 08:28 PM
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lauraroberts79 lauraroberts79 is offline
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Default Re: Advice would be great

Quote:
Originally Posted by Amazed Jean View Post
I am so sorry you have to go through all this especially while your children are young. But i would opt for sooner as opposed to later. My lung function is so bad I am on full time oxygen. That really limits everything I do. I feel like it has happened because a decent surgery was not available for me while I was young. Another factor was our moving about the country for my husband's job. I never met a Scoliosis Specialist until I was in my 50's. There were other offers butthey were not sure what they offered but they were just Ortho Docs with no experience with Scoliosis or they said I would be hospitalized for 6 months and flat on my back for 12 months ! (It was the Dark Ages!) By the time I reached my 50's my lungs were totally compromised! So DO NOT WAIT forever and have some lung function tests done to know where you stand. Also if you do....tell them to use your arm span as your height so the tests are scored correctly. (I lost over a foot in height to scoliosis but my arm span says I should be 5'6" tall instead of 4'5". I do wish you all the best and will say an extra prayer for you.

Thank you so much for your advice it is greatly appreciated, I know in 15 years I've lost 2 inches in height, and my lung capacity on my right side is definately not the same so will take your advice,
I never knew of scoliosis specialists until I started researching scoliosis I've only seen ortho docs or my gp and they've always just brushed me aside and said keep yourself fit and it won't get worse! It was like a breath of fresh air when I actually see a specialist,
I'm sorry to hear your curves have compromised your lungs so much I hope this doesn't cause you too much discomfort my degrees are slight in comparison but can be so painful still, have certainly put your advice in my 'for surgery' list, thank you again
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Old 2nd April 2013, 09:43 PM
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Default Re: Advice would be great

Too old at 33??? I was 49 when I had my original surgery!! I was in the most horrendous pain and surgery has given me a whole new life. I have a problem with my fusion in one particular area and have had to have revisions, but I don't regret any of it for a moment since I am now almost 56 and virtually pain free
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Old 3rd April 2013, 05:57 AM
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Default Re: Advice would be great

Thanks everyone, this helps me as well. I'm 29, and trying to decide if I'm going to have surgery.
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29 years old, diagnosed with AIS at age 14. Now have a 58* thoracic curve, a 37* lumbar curve, and a 20* high thoracic compensatory curve. Due for surgery at the Baylor Scoliosis Center in September 2013.
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Old 3rd April 2013, 08:12 AM
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lauraroberts79 lauraroberts79 is offline
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Default Re: Advice would be great

Quote:
Originally Posted by Mari42 View Post
Thanks everyone, this helps me as well. I'm 29, and trying to decide if I'm going to have surgery.

Big decision hey! I'm kind of swaying to the surgery as my bones are not going to correct themselves! And prob only get worse! We're in our prime so guess its best to do sooner rather than later! In between time I'm going to find a therapy ie feldenkrais and see if there's any chance it may decrease the curve at all, along with my physio yoga and general exercise if that doesn't help in anyway then surgery will have go be the nx thing. Good luck on your journey xx
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Old 15th April 2014, 02:56 PM
Nancy Gurish Nancy Gurish is offline
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Default Re: Advice would be great

Beef Geletin capsules or,
(or beef, chicken or turkey broth/w/apple cidar vinegar added in, when you boil the bones or meat it: this brings out the geletin)
Vitamin D3 (substantial dose for muscle strength)
Sulfur (liquid angstrom: for pain)
(we have taken a quarter cup to a half cup at
a time for pain)
Selenium (angstrom sized mineral)
Magnesium/Calcium/Boron blend:
of

Felendkrsis
and/or Inversion Table for
lengthening...
Read Kevin Lau's book
"Health In Your Hands"
(We have used all of these, as a family; for our family member who has idiopathic scoliosis. They have all helped, greatly, and managed pain; controls and stops worsening.)
Nancy G (Cleveland, Ohio) (I have a daughter with 'good sized curves', I don't have the numbers handy at this time. We have used ALL of the above; and each plays an important role in her/ management, and correction, and prevention system. We had an inversion table; but don't at this time; we had official Feldenkrais; but cost was an issue - you can learn by YouTube or Internet videos: The vitamin therapy is INVALUABLE, Vitamin D3: The 'beef' geletin capsules, are great for muscle building; as is the beef, etc, broth.: Cooking the bones/meat with cidar vinegar in the water, brings the geletin out of the bones; which gives you natural glucosamane chondroitin and geletin.) The sulfur, selenium, mag. calc and boron/ (mag cal and boron come together in an ampule) We purchase from a company on line called Water Divine.) If you call the number on that screen you can find a dealer near you. God Bless. Nancy
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Old 15th April 2014, 03:03 PM
Nancy Gurish Nancy Gurish is offline
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Default Re: Advice would be great

Hi once again: I know that I'm new to this forum; but I'm an 'old hand' at the Scoliosis journey. One more thought that is --- my opinion; from learning about Feldenkrais -- and other avenues of help: "a Moveable spine is a healthy spine." So, we have not opted for surgery - this has not been 'on the table' for our family. Our spines are 'meant to move.' Dr. Kevin Lau's book - confirmed this idea; which was originally presented to us by, the SpineCore people; and by our Feldenkrais practitioner in Cleveland, Ohio. A healthy spine is a moveable spine.(If you have had surgery, there is much help to be found in conjunction with the surgery: or if you are planning it.) Vitamin therapy is essential: Vitamin D3: The minerals are most likely - essential. The Feldenkrais will help to stop pain; and to even out the 'lean.' This is from our experience. Daughter is 18 years old; diagnosed at ~~~6.. Was told to 'Wait and See'... And now; (I'm the mom) I know that 'waiting is never the right idea.) Action, can be taken, immediately. Waiting, was the reason for progression, in our case; We eventually also, used the SpineCore brace: which, is a most helpful tool. Any 'breatheable' and soft brace will help for pain; and for ... everything. Nancy
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