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Amazed Jean
9th October 2004, 09:26 PM
I'm curious to know who hasn't had surgery or bracing? Also what are their curves and what are they doing for pain releif etc.?

Thaleias spirit
9th October 2004, 11:02 PM
Ive never had surgery or bracing... the only times my doctors ever mentioned my kypho-scoliosis is when i had medical letters done or if i mentioned maybe getting different pain relief...

I learnt this year that my scoliosis was diagnosed when i was 7 (then it was centred at L2-L3 and concave to the right)...im now 31 and none the wiser...

Had referrals to an orthopaedic specialist in june who told me after two minutes nothing could be done...and even if i had been presented to them when i was 7 they would only have considered surgery to save my lung capacity and that has never been affected.. (its currently 95%)...that it certainly wouldnt have stopped my scoliosis progressing... he also told me that it wouldnt get worse.

Strange considering in the past ten years Ive felt a huge difference and also Ive had more problems with my back in the last year...where its putting more pressure on my hip/leg and causing numbness.

I also was reffered to a thoracic surgeon who said unless scoliosis surgery was carried out first there is no way they will consider doing a thoracoplasty...it would do me more damage than good...He also recommended that I get a second opinion on my scoliosis..

so I still have no idea what degrees my curves are...

As to pain relief..I think Ive been very lucky so far... if it starts at all I take some panadol ....on really bad days (which dont happen too often..maybe once every two months if im lucky) i have to take distalgesic... and rest...although on those days it hard to stand up / walk / sit even lie down...so im glad they dont happen too often...

Anytime a doctor asks what meds im on and i tell them that they look really stunned! :roll:

c.

lynns
9th October 2004, 11:36 PM
i too have never have had surgery or bracing. ive known about mine since i was 13
and back then doc didnt know nothing about it, so was dismissed. i also have never been told my degrees wich are in neck and thorasic. i am going to be having surgery on spine soon but due to another spinal deformities.

BarmyArmy
10th October 2004, 01:20 PM
I'm another unfortunate soul that was told just to get on with things :woe:

I have a couple of mild curves (don't know the degrees) but I have a lot of pain. My curves aren't large enough to require surgery and bracing was never mentioned. I basically struggle through with a combination of a lot of pills(painkillers and muscle relaxants) a TENS machine, physio/pilates and no strenuous activities. Because of my problems I can only work part-time but I work in a bookstore so I never have an easy day. :ph34r: I know it's the wrong profession for someone with a dodgy back but I love my job. :D

I've had scoliosis since I was 18 and it's kinda deprssing to think that I'll always be struggling through........................ :mope:

Lieve
10th October 2004, 02:52 PM
I've never had a brace nor surgery either. It's first diagnosed at the age of 16, I'm not sure what my curves where at that time. My last x-rays showed a thoracic curve of 32 degrees and a lumbar curve of 36 degrees or was it the way around, I'm not sure anymore. I have backpain as long as I remember, but I always fought against it and I could cope with it until now.

Since last year it increased a lot, which made me to decide I have to slowdown all activities a bit to reduce pain again to a bearable level. I try not to cross my border too often, it isn't that easy, but I'm learning.

Next week I have an appointment with a doctor to see if there are no other problems cause the pain and I hope he can give me some advice too.

BarmyArmy
10th October 2004, 07:45 PM
Originally posted by Lieve@Oct 10 2004, 02:52 PM
I have to slowdown all activities a bit to reduce pain again to a bearable level. I try not to cross my border too often, it isn't that easy, but I'm learning.


I struggle with that too :oops: , sometimes I have a habit of doing too much and I pay for it big time. :nut:

nutmeg
11th October 2004, 02:11 AM
I've never had surgery or worn a brace. I have just a thoracic curve, last officially measured at 43 degrees when I was 13 (33 years ago). I haven't got any shorter since then, so I assume it hasn't increased much. I'm one of the fortunate ones without significant pain from my back. I've only had about 4 occasions when I've had enough pain to affect my day to day activities, and in all cases it was muscular pain in my lower back, well away from the curve, so may have nothing to with the scoliosis. Apart from that I've had the lower back discomfort that a lot of people experience when carrying heavy shopping, but this has become far less common since I started learning Alexander technique.

Amazed Jean
11th October 2004, 04:26 AM
Hey, Thanks for sharing with me. I just wondered if there people out there that hadn't had surgery besides me. I am a lot more aware now that I 'm "old" that some of the surgeries being done in my high school years have not turned out as well as planned. I do wish that someone would have made me look at the lung dysfunction earlier. I was asking doctors but they were kind of shuffling off by saying that nothing they knew of could be done. So much for what they knew Huh?
I feel it is sort of my responsiblity to warn the younger SSO ers to not just sit idly by. Your health is your responsibility. Take care of what you have. Ask questions and learn as much as you can then keep after your health.

Kayla
11th October 2004, 05:09 AM
I have had both

M.Magudulela
11th October 2004, 11:57 AM
Sorry for joining in so late. I'm 33 and never had surgery or bracing. My curves are 80/79 deg. I only found out three/four years ago that I have congenital kyphoscoliosis when I was seeing a doc about my stomach problems, I have known all my life that there was something wrong with my back but didn't know what. I take diclofanac for back pain and I also wake up with terrible pains at the back of my legs. My doctor is busy with tests and stuff to prepare for surgery.

Thank you.

Maria M

scoligirl
27th October 2005, 10:29 PM
I've had no surgery or brace, I don't know the degree of curve but it is around the 30's I think. I have no pain so don't have any treatment for it (hope I won't need it too near in the future!) It is anoying though as now I know about it I can feel myself sitting/standing wonky all the time.

Jul1e
7th December 2005, 03:53 PM
I first visited my GP at about 13/14 with back pain. Since then Iíve been seeing a specialist for what was a 24 degree thoracic curve. It has increased now to around 27-30. I was sent to try physiotherapy, twice, as a way of reducing the pain around my right shoulder blade, which protrudes much more than my other.

I have not received any other form of treatment via my specialist to help reduce the pain, as Iím waiting on my follow up appointment in January 2006. Most of my days are bad, to a point where I am continually asking people to massage the muscles around my shoulder, or a trapped nerve is preventing me from moving my left leg.

Luckily my friend is a trained sports masseuse, so I visit her quite often, but then itís only a matter for days before I can feel the tension again. If anybody has any pain relieving suggestionsÖ

Abbi
7th December 2005, 04:05 PM
Hi Julie, :welcome2: I understand how you feel with the pain, pre op I had mild - severe pain in my back! To allivate it, if it got bad I would take painkillers! Other things I have tried is heat....heat usually worked for me.....like taking a hot bath, or lying on a hot water bottle (that is now my current favourite)
I have also tried a TENS machine (which helped a little)

Can I suggest if it does get any worse, I'd ask for painkillers from your GP!

Just out of interest who is the specialist you are seeing?

Abbi

jfkimberly
7th December 2005, 04:09 PM
With a trained sports masseuse as a friend, you've probably already got the best non-medicinal pain relief there is, you lucky woman. But in case you're not already doing it, heat helps--especially a nice soak in the bathtub.

You're 20 now? What kind of specialist are you seeing? 30 degrees isn't severe enough to get a recommendation for surgery under normal circumstances, but the fact that you're sometimes unable to move your leg concerns me. Have you told your doctor about it?

Jul1e
7th December 2005, 04:12 PM
I think his name is Mohammed !? I haven't seen him for around a year with me trying physio, and I'm terrible with names :woe:

The hot water bottle is my current favourite too, Iíve got it now! I don't what I would do without it sometimes.

How are those TENS, does it make much of a difference? I considered buying one a while ago. Can I ask where you got yours from?

Abbi
7th December 2005, 04:16 PM
Was the guy you saw a scoliosis specalist?

erm...TENS machines can work...they did I bit for me, but everyone is different! I believe mine was bought online, but you can get good ones in Boots too!

Jul1e
7th December 2005, 04:30 PM
He is orthopaedic. They know about it. I have two discs in my lower spine that are slightly.. slanted, not sure how to describe it. So my guess is sciatica. It doesn't cause me much trouble though, its an occasional thing. My main problem is aching muscles. I use heat a lot.

jfkimberly
7th December 2005, 04:38 PM
With a protruding right shoulderblade, it might be rotation, and not aching muscles that are hurting. But you're being seen by an orthopaedic specialist, so just keep watching it.

Meanwhile, :welcome2:

butterflylr
9th December 2005, 07:23 PM
I got a TENS machine from my old chiropractor. I haven't used it in a while. I used to love when I was going to the chiropractor 3x a week for treatment. They would use one on me and I'd lay on these wedge block thingies. My curve actually improved *slightly* while I was going but it went right back to where it was soon after I stopped. *sigh*

Oh yeah, I haven't had surgery or bracing but I think you already knew that. We found out about my scoliosis when I was 15 and we looked into the option of bracing but by that time I was done growing and it was fairly useless. We then did a lot of chiropractor treatment which I quite enjoyed. After that, we kind of ignored it for about 5 years. Now I'm just doing checkups like once a year or every other year.

I get lots of annoying pain and the problem is I don't like to take meds to stop it. I have funky side effects from drugs and I've already been treated for an ulcer earlier this year. I don't want to use more drugs that would increase my chance for another one. Now that I have a BATH though, I'll have something to relax my poor muscles.

Oh yes, my curves are 45-50(ish) thoracic and 30 lumbar.

butterflylr
9th December 2005, 07:25 PM
Oh Abbi, this is off topic but I'm impressed by your new photo submissions!

Marcilo
13th December 2005, 08:38 PM
Apart from that I've had the lower back discomfort that a lot of people experience when carrying heavy shopping, but this has become far less common since I started learning Alexander technique.

I wonder what this technique would be?

I too am "Wait and watch" case. I used to get pain once in a while earlier but now it has become more frequent. I have hard time bending forward, I been told I have super tight hamstring. My main concern is the pain that I have on my lower ribs (on my back). I am sacred to even hug people because of that, it just is very painful if some one presses that area, not sure why? it feels like some one is crushing ribs

Thaleias spirit
13th December 2005, 09:33 PM
This is basically what the Alexander Technique is all about.

"The Alexander Technique is a method that works to change (movement) habits in our everyday activities. It is a simple and practical method for improving ease and freedom of movement, balance, support and coordination. The technique teaches the use of the appropriate amount of effort for a particular activity, giving you more energy for all your activities. It is not a series of treatments or exercises, but rather a reeducation of the mind and body. The Alexander Technique is a method which helps a person discover a new balance in the body by releasing unnecessary tension. It can be applied to sitting, lying down, standing, walking, lifting, and other daily activities..."


More information can be found here :
http://www.alexandertechnique.com/articles/engel/

Jonny
14th December 2005, 01:09 AM
We've had a discussion about Alexander Technique before, on this thread:

http://www.scoliosis-support.org/modules/ipboard/index.php?s=&showtopic=1918 (http://www.scoliosis-support.org/modules/ipboard/index.php?s=&showtopic=1918)