Scoliosis

[longtallwalker]

In need of some kind words and information and experiences.
DD diagnosed 4 years ago at 16 with scoliosis.
Not severe enough for surgery at the time. She is experiencing some pain now, most noticeably when studying.
She's at uni studying a demanding subject.
Her Physio has now recommended a brace to improve the hump she has through her spine twisting. This won't help correct the curve though, which we fear is worsening.
We'll have confirmation of this after a x Ray.
My question is - has anyone had corrective surgery as an adult? I'm
I interested in learning how bodies cope with surgery the older they get.
Thank you in advance. My insides are churning with anxiety at the moment :(

Sorry to hear this OP. I can't give any advice but in similar situation, DS 16 has just been diagnosed with mild Scoliosis, 20 degrees. He is refusing physio though. Doctor said it won't progress because he has likely finished growing so no chance of curve increasing. I am therefore surprised to hear about your DD's progressing further and that is very worrying.

Long has she been having regular checkups since it was first confirmed? Were you told the degree of the curve when she initially saw the consultant? Up until recently I worked for a scoliosis surgeon. Saw lots of adolescents with scoliosis but if the initial curve was not more than 40 degs they would be followed up every three to six months until they stopped growing to ensure the angle didn't increase.

Hey there!

I understand the anxiety so will share my experience.

I had corrective surgery aged 21 (ten years ago). It does seem that you're considered positively jurassic by that age, in the scoliosis world! My largest curve was 86 degrees. It got so out of hand due to various phobias but eventually the pain was too unbearable so I sought help. My only regret was leaving it so long.

I have quite an extensive medical history so had to seek a second opinion as the first surgeon I saw felt that the risks were too great in my particular situation. After pleading my case, the second surgeon agreed to operate.

I'd built it up in my head for so many years that honestly, the whole experience was a breeze in comparison to what I had imagined. After the first surgery, I actually felt no different, like nothing had happened. The second stage was a little more tough. The worst bit for me was the feeling of unfamiliarity. After so many years of my back muscles and spine being in that curved and twisted position, to suddenly have everything moved into a new position was very odd and uncomfortable for a bit. The other thing that I didn't like was the chest drain but that was removed quite quickly I think. The first 48 hrs were rather a blur due to the morphine!

They don't hang about with getting you back to normal. It's quite amazing really, just how quickly this process starts.

I personally think a lot of the recovery experience is down to yourself, as a person. For example, I'm no stranger to being in hospital and experiencing pain due to my other health problems. If your DD is otherwise healthy she may find it more challenging than I did or more painful if she isn't used to pain. Does she want the surgery? I really wanted the surgery, which also helped I think.

Having a surgeon who you trust is important. Don't be afraid to ask for a second opinion or to see someone else if that's what you feel.

The upside of being a 21 year old scoliosis dinosaur was that I was in complete control. I got to ask the questions and make the decisions. Had I been 14 it would have been more of a family thing where no doubt I'd have been angry at all concerned and very bitter during recovery.

It is a scary thing, whichever way you look at it. Being informed, asking lots of questions and knowing what to expect at each stage definitely helps though.

Best wishes for you and your DD :)

I didn't think they still braced?

Patch, I can see DD ending up a dinosaur like you! She was diagnosed at 40degrees at 16 but had virtually stopped growing. A degree or so more a year later. But we haven t had it measured for two years bc she's been busy busy
And hundreds of miles away from us. But this latest trip to the Physio has freaked me a little.
They're only bracing to rry to improve the appearance of the rib hump. The curve won't change.
I
Must press her to get an x Ray. It seems to me that gravity is going to work on this for her whole life and it will get worse

My son had scoliosis surgery when he was 18. If you want to ask me any questions is send me a pm.

So sorry to hear this.
It was recognised in my sister then about 9 and she had a brace for about two years. We came back to Britain when she was eleven and had a reference to see Professor in Edinburgh. My sister was one of the children who was written about in the papers for this surgery. She used to get invited back and be photographed and attended lectures occasionally I think. She spent about two years of her life on and off in hospital in Edinburgh. She had a double curverture and was told she would be in a wheel chair at 16 if she didn't have the surgery. She is quite bitter about some of it and is still in pain. She is in her 50's now.
However without the surgery I don't know how she would have been.
In the meantime could you get her some specialised massage. My sister is a massage therapist and does a lot of remedial work. It might ease your daughters pain. I hope she is seeing a specialist.