advice please. adult scoliosis

Bones, joints and muscles
1

I went to doctors 18 months ago as my husband had noticed abnormal shoulder. Sent for xray. Doctor who was on his last day at surgery phoned me to say slight curve maybe arthritis. Not to wotty and go for physio. NHS gave me appointment and was given excersice to do. Back then I had no noticeable pain. Although I have had severe back pain twice in previous years so not sure if that is related. I have been having a lot of pain in upper back for past year and think shoulder has become more pronounced. Went to doctors this week and new doctor said I was diagnosed with scoliosis based on xray. News to me. She also said I can have pain management and she will refer me to orthopaedic people but they may only offer pain relief . She said she is not very clued up on scoliosis so couldn't really advice me on what is going to happen. ( will it get worse ? And why I have it ) no appointments available at the two hospitals she has referred me to. So I'm a bit distraught now and scared as I don't no what to do or what's going to happen to me. I'm 49 years old / female.

Thanks for reading and I look forward to any advice.

2

After reading your message, I am unsure as to how much you know, so I think I'll go through the main points if that is ok?

So firstly, scoliosis is the abnormal cuvature of your spine. The majority of scoliosis is known as idiopathic, which means that the cause is unknown. With adults, scoliosis can also be caused by general wear and tear of the spinal column. Generally, scoliosis only gets worse with growth, which is why it is a larger problem amongst children who are growing, but it does depend on the degree of your curve. Once a curve has hit 45-50', it will usually continue to develop at a rate of 1 or 2 degrees per year.

Now, treatment for scoliosis is relatively straight forward. For many people, doctors opt for the 'wait and see' approach. This is monitoring your curve every year or so to see whether it does get worse - if it doesn't, then great! If it does, then another treatment option maybe looked into.

For children, the next stage is bracing, although I don't know how often this is suggested for an adult, but if you are in pain due to movement then it may be worth a shot?

And the last treatment option is surgery. The surgery is called 'scoliosis spinal fusion surgery', and if you look it up it really does sound scary, but from personal experience I can tell you that if your doctor recommends it, then really do consider it - I had mine less than a month ago and I could not be happier with my results so far.

As for what is going to happen next, you have been referred to an orthopedic (bone) specialist, probably a spinal or scoliosis specialist. They will discuss your scoliosis with you (and your partner) and then from there decide on a course of action.

This maybe physiotherapy to help with pain, painkillers or something different, but make sure you ask them any questions that you may have right there, as it will help you to stop worrying.

I really hope that this helps a bit! Feel free to reply here or message me with any questions that you may have, I'm willing to help in anyway that I can!

Izzie x

3

Thanks for the reply. I have not had it monitored and have no idea of the degree of it. It's very confusing as I had to ask to be referred as doctor had no answers. I thought she may of sent me dor another xray to see if it has got worse. I don't even know if the orthopedic doctor I'm going to end up seeing at some point is going to have the answers as she has just done a general referral. I'm scared it's getting worse and I really struggle with certain things ...lifting ....sleeping...being in one position to long. So annoying that I wasn't told this over a year ago. All I have been offered is pain relief and I don't want to become reliant on pills.

Did yours start as an adult ?

4

Hi Deborah

I'm now 69 and was diagnosed with kypho scoliosis approx 12 years ago.

I have had sore back over the years but just put it down to a sore back {lower} went to an osteopath he did a few clicks and it was fine again...for a long time. I dont know if thatwas the start of it or now.

My diagnosis is idiopathic, chronic degenerative kypho scoliosis. Idiopathic is of no know origin the rest you can work out for your self

Kypho is a slight hump on your shoulders, the scoliosis is a curve in your spine.

GP will not be a lot of help...if you think about it...General Practioner....they know something about a lot of things but not a lot about one particular thing.

The orthopaedic appt is your best bet.

They arent happy about operating on adults.....apparently the operation is very successful on children fro about 10 to 19 years old but after that its not very successful. This is what my ortho told me.

You have to try and find other ways to do things rather than lifting.

What about a shoulder bag do you use that...if so I wouldnt I was advised to use a small back pack you can get some really nice ones. Just try not to lift as i say try other ways.

Sleeping...well it depends how you are affected......tere are different ways to ease the discomfort

One position for long during the day is a typical arthritis thing......you need to sit, then get up and move a bit then sit again if necessary.....but not to do the one thing for a long time.  Pace yourself even if you feel brilliant and think you can do loads of things....DONT.....I did the other day {clearing out wardrobes} and am suffering for it now but it will go eventually..

So its do as I SAY not as I DO 

Any questions just shout and I'll try to answer them

Love

Eileen

5

The first thing I'd suggest is to see if you have one leg shorter than the other.  Does the shoulder drop down on one side?  I hadn't realised that I had one leg 2cm shorter than the other until a physio picked it up and they reckon that was the cause of my scoliosis, so I had the shoe built up for that foot.  I am doing more exercise to strengthen muscles in the spine as my core muscles had definitely got weak because severe arthritis in knees had put me off exercising a lot, but I decided it was a hurdle I had to get over.  An exercise bike has helped hugely.  What may have weakened mine may also have been because I have hypermobility, so ligaments are weaker etc. but you can easily check for that yourself to rule it out, by looking online to see symptoms.  But going back to the shoulder dropping one side, I hadn't noticed mine at all until recently when I looked back at photos of the past few years and I look like the leaning tower of Piza!  I just assumed that my husband handn't held the camera straight!  Now I realise what was happening!  As I said to someone recently, the TENS machine sorted my pain out, long term - I used it for three days and was then pain free until physio brought the pain back again, used it for three days again and have been fine for a couple of months or so now, not needing it.

Hope you get some answers there.

6

The first thing you need to ask your orthopaedic consultant is how big is the curve? If you are near 50degrees then surgery would normally be discussed. If not they will proabaly monitor you on a yearly basis and offer physio and pain relief. Operating on adults is not unusual. I got operated on Feb this year with a curve of 71 at top and bottom was 48. I am 57. The longer you are left the more chance of your back getting stiffer and that is what they will monitor for, as it would be harder to straighten you if you are left and of course they will be monitioring the curve for any rapid develoment.  There is plenty of information on the internet about scoliosis, and if you are brave enough you tube it as well. IN terms of hospitals assuming you maybe in the UK, you have the right to choose and book. This meaning you can choose the hospital you want to go to. To see if they cover scoliosis have a look on their webstie for their orthopaedic surgeons, or look on BMI or another privater hopsital to see if the consultant works out of there. If he does you know you have a leading sugeron. Your  doctor has a duty to refer you to secondary care, Ie: hospital, so go back and ask to be refered and be armed with what hospital you want. There are a few in the UK that specialise in Scoliosis so check them out too. If you need anyomore advise then contact me and I will be happy to give advice if you think it will help you. Try not to worry as you could have a long wait before seeing the consultant. 

7

Hi Chris

Where did you use the TENS, I've got one but it didnt seem to do much good. I'm been to a private physio recently because 4 weeks post op my 2nd hip replacement I fractured a bone doing an NHS exercise. The pain from that is on the side that was fractured {its a permanent thing and I'm on crutches permanently} He said for that pain to use the TENS every day for 30 mins. one pad on that side {bone that juts out,above the hip but below the waist} it does seem to help but when I used it on my back it didnt seem to work so I would be interested to know how often and where you used it

As for the leg length.....that was the first sign with me.....I noticed on certain trousers that one trouser leg was slightly shorter than the other!!! If i wore skirts or dresses itwouldnt have been noticeable but I live in jeans LOL

Love

Eileen   UK

8

Hi Deborah

One thing I forgot to mention is before your appointment with the orthopaedic consultant keep scribbling notes down, sore, when, where, what causes it etc and anything you want to ask him

Before you go sort it out and take it with you because if you are anything like me.you'll come out of the appointment thinking Oh why didnt I ask him that??? so have everything written down....just bullet points that you understand.

Love

Eileen  UK

9

Hi Eileen, 

I put the top two sticky pads a few inches either side of the spine almost touching the bottom of my bra and the lower two just above the beginning of buttock level.  I increased the strength of the TENS (I bought the one on amazon The TENS machine Dual Channel Medfit 1) as I got used to it, so kept it up to the maximum strength that was comfortable and used it as they suggested, about 8 hours, I THINK it was, the first day, then reduced it the second and the third only thought about it in the evening and didn't need it after that.

I hope this might work for you!  I live in jeans too, but hadn't even noticed one leg was shorter than the other!  It sounds nasty with your hip, and doing NHS exercises too!  I've started cycling (exercise bike) and treadmill to add bone and muscle strength now.  We're considering a cross trainer too (that's the machine, not an annoyed physiotherapist LOL!) but I'm not sure if my knees would stand up to it.

10

Hi Chris

Thanks for the information.....I've never got round to using the 4 pads....just the 2. Mine is from Lloyds chemist but it should make a lot of difference should it.

I must give it a try although 8 hours seems a long long time

Thanks again

Eileen  UK

 

11

Thank you all for the replies . I'm going to take all the advice I can get. Hope it doesn't take to long to see someone. I've been referred to Preston and Chorley hospital but as yet on the choose and book neither have any appointments free and I have to wait for them to get back to me.

I agree with the leg length comment as I do tend to bend right leg when standing so I guess it is slightly longer.

I just get so scared I'm going to get worse and be deformed. I'm not the best at taking pain killers etc and hate to think I will become reliant.

12

Here is where my knowledge ends I'm afraid, as I'm 15 years old (16 as of tomorrow) so I can't comment on adult scoliosis, only scoliosis in general.

I'm sorry that I can't be more help!

Izzie x

13

Eileen, I may be wrong, but I THINK that's possibly the problem!  Can I suggest you phone The Tens Company - 0800 121 4626.  They are incredibly helpful and will offer advice.  My husband just reckoned it was the problem just having the two pads rather than four because you need the machine to effect the nerves between the points where the pads are.  I'm not explaining this very well at all - I know what I mean but can't explain it.  I did look up reviews before I bought mine and some weren't very good about the Lloyds pharmacy ones BUT I honestly think if you can speak to the Tens Company they will tell you if their is any different, or if you can hope for different results with theirs compared to the Lloyds one.  They don't come over as a oney grabbing company but truly want to do the best for people to help them.

14

HiChris

Thanks for the information.....I will do that and see what they have to say.

Love

Eileen  UK

15

Hope it can help you Eileen:-)  Love Chris:-)

16

hi debs im 48,and i have two curves in my spine ,i also have sciatica and arthritis in my back. i cant have the operation ie rods n pins as apperantly too risky for me. so my scoliosis will get worst not better.i go to pain management which is waste of time really. im on tramadol 5 x 50g a day at the moment and apart from making me high it does take the edge of my pains but only my sciatic pains .they say i was most likely body like this and as the yrs hav past ie special past 6yrs ive been in alot of pain ,i cant walk even 20metres without my back killing me so i use a mobililty scooter .all i can say is push for all ur appts ask for a mri scan which will confirm what degree your curve is .dont be scared ok ! need a chat go on facebook look for me kaz mead/karen mead ok .x