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Jadey
03-20-2006, 04:07 PM
Hiya all

I'm new to the forum by the way, so, hiya everyone.

In October 2001 I started having mild back pain in the lumbar region. My Mum took me to the doctors in April 2002 as it wasn't going, I was prescribed with strong pain killers (orange one end, green the other) but I couldn't swallow them and I also had this cream for my back. My back pain still wouldn't budge. Later that year I had to quit going to karate lessons as I thought that caused the pain. Then April 2003 I was taken to the doctors again, but with a different doctor, and he told me to go to hospital as I may have scoliosis. The next month I went, had the x-ray, and my jaw dropped when I saw the x-ray, yep, a lovely scoliosis! The next month I was taken to hospital for further investigation, I had a bone scan and a scoliogram. I needed a scoliogram and check-ups every six months.

With my last appointment I was diagnosed with 'Adolscent - Idiopathic - Thoracic - Lumbar - Scoliosis' with a thoracic curve of 31 degrees and lumbar curve of 26 degrees.

I am still getting back pain. From summer 2005 to about Mid February this year I didn't experience much back pain but I bashed it on the corner of a dining chair and I've been getting extreme back pain since, so bad I've been on the breech of tears (and it's hard for me to cry). I take paracetamol and ibrofen but the pain still doesn't go, I also lay down with a hot water bottle but I find it makes my back sting. I had to undo my bra when I come back from school, but I didn't need to before. It makes me tired, hyperventilate, sick and hot and I tend to snap at people but I don't mean to. My parents won't do anything about it so all I can do is lie on my bed in agony. My doctors won't do anything for it either, it p***** me right off and I get really annoyed and depressed about it.

Also I think my back is getting curve becaue I notice that one side of my rib cage is closer to my hip then the other side, also the right side of my rib cage / shoulder is poking out more then the other, I've never noticed these things before.

Does anyone have any advice or similar stories?

angela505
03-21-2006, 01:01 PM
Hey !!!!!!! I understand you very well. I think all of us have passed through this situation. I think you should talk to you parents and let them know how you feel about this and the changes you're seeing in your body. Scoliosis can increase from one moment to another. they need to be very careflull with this. I have 53 degrees toracic lumbar scoliosis and when I'm in pain don't want anyboby talking to me either, trust me is not only you.

I hope you feel better knowing your not alone and that were here to hear you and help you if we can.

Jadey
03-21-2006, 02:13 PM
Thanks for the advice.

I've tried talking to my parents but they don't want to listen to me. It really annoys me because there's me I'm walking around the house, my back is hurting, and they just ignore me. I'm starting to hate living at home now :mad:

The Professor
03-23-2006, 11:13 PM
I'm not trying to scare you or anything, but your story sounds analogous to mine in many ways. It's amazing how stupid physicians can really be.

I'm an adult, amost 35 years old now, and first started having sporadic back pain in 1999. I think it was an uncomfortable car that initiated the whole thing, but getting rid of the thing helped only slightly. But, since I'm "quite well compensated" (to borrow the words of the chiropractor who actually made the diagnosis), it went undetected until just last month-- a 34 degree thoracic and 28 degree lumbar curve. My idiot physician never had a clue. I guess it's partly because my legs are of equal length and pelvis is not rotated, so there's not really much of an outward sign of it. I passed every scoliosis screen done during my school years. The pain, while still off and on, has has only worsened over the past 7 years.

Most physicians are idiots. You have to press and goad them to come to the right conclusions, but make sure you DO YOUR HOMEWORK FIRST. Most of them are not well trained to use higher-order thinking skills. Medical schools reinforce rote memorization, because it's what gets most of them through school in the first place (here in the states, at least). With the patient load many physicians have, they often don't have the time or energy to really exhaustively research the subject and see what's out there as far as treatment options and management options.

Also, most physicians are loathe to treat pain. They'll treat you like a junkie if you insist on some kind of pain management medication. You should probably use mild over-the-counter drugs (acetominophen, naproxen, etc.) for everyday pain, and get something stronger from a doctor to manage those flare-ups that I'm sure you are familiar with now. Be persistent on this. Also, be CAREFUL... while some of these drugs, like OxyContin, are a Godsend for management of chronic pain, they can be HIGHLY addictive. It's best to have someone you know keep the medicine for you and give it to you when they can tell you really need it. I have my wife keep these for me, hidden away, so that I'm not even tempted unless I'm having one of those flare-ups that I'm sure you've become all-to-familiar with.

This last flare-up has lasted for weeks. I'm getting quite tired of it, so believe me, I know what you're going through. Things that help my flare-ups are a nice hot shower with the "pulsating massage" feature, immediately followed with an ice pack, and an occasional (professional) massage. If you opt for the massage, you might look for someone who has experience with scoliosis patients.

I guess my point is, keep pressing on your doctor. Become a pain in the (_I_) to the point where he or she will finally DO something rather than just tell you that they can't do anything.

Finally, you need to get it treated. You're probably not at spinal maturity, so bracing might be an option to help halt the progression of the curve. Are you wearing a brace? Your curves are at about the right degree where the SpineCor might work. It's way too late for me. It's just something I now have to live with. YOU have a chance to do something about it, something I did not have.

Jadey
03-24-2006, 01:01 PM
Thanks for the message, was a great relief to finally talk to someone who understands how I'm feeling.

I'm thinking of going to the doctors soon ish as the pain is still persisting and is stopping me for doing normal things and makes more domestic jobs alot harder (hanging the washing outside and emptying the dishwasher). As I'm 16 I am allowed to visit the doctor without an adult, although I'm tempted to bring a friend as my Mum won't take me.

I don't currently wear a brace at the moment, my consultand told me that my spine isn't curved enough nor is it curving enough (it curved to 1 dgree in nine months but then the thoracic curved by 2 degrees and the lumbar decreased by 3 in the next three months) but he thinks my spine is getting straighter.

I do empathise you. My doctors do sweet **** all with my pain, all they are mainly conserned about is getting me dischardged as my spine is 'straightening'.

Once again thank you for the message, good luck with everything :)

Jacque's Mom
03-24-2006, 02:43 PM
I sent you an e-mail just a few minutes ago. LYNN

Jadey
03-24-2006, 05:14 PM
Thanks Lynn, I've replied.

Jadey
03-27-2006, 03:20 PM
Hiya all

Well today I was absolute agony, it was draining me!

Anyway my Mum came home from work, saw me, and said "I'll book you a doctors appointment for next monday." It cheered me up because we're finally doing something about it.

Thanks everyone for supporting me :D I'll let you know what happens.

Jadey
04-02-2006, 02:58 PM
Well, kind of pissed off, Mum isn't going to book me a doctors appointment now, instead she bought me stronger pain killers (Panadol Solubal EXTRA) and she MAY try and get me a soon hospital appointment at the hospital.

Sabrina
04-04-2006, 08:56 AM
Hey im new here and i know what you mean....No one will do anything for me and the pain in unbearable! how do you cope with it? there are days i can't even move.....

Jadey
04-05-2006, 06:15 AM
Hiya, welcome to the forum.

I bought myself some disolvable pain killers but when they ran out my Mum bought me stronger stuff, same paracetomol but stronger. I don't know how I cope, I just do I s'pose. I've had pain since October 2001 and I'm so used to it now, I mean it's been alot worse since mid February this year and I have days in which I just don't have the energy to go on but I just do.

The Professor
04-06-2006, 08:45 PM
I've had pain since October 2001 and I'm so used to it now, I mean it's been alot worse since mid February this year and I have days in which I just don't have the energy to go on but I just do.[/QUOTE]

I know what you mean-- the pain comes and goes, just seems that my flare-ups have been much worse in the last 3 months or so. I have my good days and my bad days. Walking (at least 1-2 miles) seems to really help, at least in my case, but each case seems to be different. I've had to give up carrying my daughter for more than about 5-10 minutes at a time because it causes a sharp pain right between my scapulae (aggravating the thoracic curve no doubt).

I've been doing some background reading researching the subject, and it seems that what passes for enlightened scientific thinking in this field is abject B.S. Most of the studies are poorly designed because the controls are not well matched, and find no correlation with pain levels because the old geezers that they match with the study participants have pain from their various other ailments!

I frankly don't see how some of these studies ever make it past peer review. They're positively awful!

Jadey
05-16-2006, 05:41 AM
Hiya again

Well I'm at school at the moment and my back is hurting like hell! My shoulder blades hurt, I can not lift anything light, open and close my bag or even put my jacket on. My lower back just aches. Basically what happened was yesterday I was jumping about and jarred my back and I also fell over. My back hurts like hell and I don't know what to do, I have no energy and I'm hyperventilating. Help me please :(

EDIT: I'm also hot and sweaty.

marapets
05-17-2006, 10:37 AM
im sorry :( please just try and stay as positive as possible i know it is hard :(

Jadey
06-09-2006, 02:25 PM
I am a very positive person, I go through many difficulties and still be able to put a smile on my face, but my back just wipes it off.

summer
06-09-2006, 02:54 PM
I've dealt with the same thing all of my life too. I can tell you what I did that helped me, but remember what works for one person may not work for others.
Taking yoga or stretching classes, swimming and low impact exercising helped me tremendously! I also used a heating pad. I HAD to stop certain things that would always make it worse. It sucked but here are some activities to stay away from : horseback riding, golf, step aerobics and all high impact aerobics. Hope this helps somewhat.

Jadey
06-20-2006, 11:54 AM
Thanks for that advice Jenn. I started to do exercises like weights to strengthen my muscles to support my back, only light weights though. I am going to run in Race For Life on the 9th July, that'll probably kill my back and hips, lol, but it's for a good cause.

I want to start swimming again soon, I'll have to brag someone along with me or do lengths with the old nans, lol.

Thanks again.

Sherie
06-20-2006, 02:40 PM
Hi Jadey,
Please think twice before running. Our chiro definitely did not want my daughter running track (she was very disappointed). I don't think all that jarring is going to be good for you, especially if you're still in pain. If you can just walk, do that, no cause is worth you hurting yourself. I've known 2 adults who had back surgery from running/jogging and they didn't even have scoliosis. My daughter's curves are T34/L45, she was having pain before but now is in the Spinecor brace and is pain free. Personally, I don't think pain-killers are a long term solution, you probably need to try alternatives, such as the things Summer suggested. Good luck, I hope you get some help.

Jadey
06-20-2006, 03:44 PM
I've always wanted to run in Race For Life for years, my Nan died of cancer and I almost had breast cancer at one point (turned out that my breast lump was not cancerous) and it means alot to me. It's only 5km (3.5 miles) and I probably won't be able to run it all. I want to take part.

About the pain. I don't have family support, they just think pain killers are the simple solution to my pain. They will not take me to the doctors and at one point I had to take myself to the doctors with a friend without them knowing, I was in so much pain it was horrible.

There is nothing I can do anymore, I have no one to turn to, where I live, and the only option is to move to the states, in my opinion anyway.

LATigner
06-20-2006, 04:02 PM
I am so sorry you are unable to get help where you live but moving here to America is pretty drastic. Others your age have gotten some curve reduction and help with the pain by using the SpineCor brace. The head of SpineCor, Andrew Mills is in England. Perhaps you can e-mail him regarding your scoliosis and he might be able to help you get connected with a doctor who can prescribe SpineCor if it would benefit you. I think Andrew Mill's e-mail address has been posted on the thread about Spinecor on the forum. If not, you can contact him on the SpineCor website. Best wishes.

Jadey
06-20-2006, 04:04 PM
I really wish that I could have a brace but my doctors and specialist said that I don't need one. That sucks.

adnama
08-03-2006, 08:34 PM
Hi Jadey
My name is Amanda and I have a thoracic curve of 28 degrees and a lumbar curve of 20 degrees. When you described yourself I pictured me. I also have uneven hips. The right side of my rib cage is closer to my hip than the left side. I feel as though my life is consumed with pain. It's strange how much our personalities can change because of pain. I find myself being short and annoyed with people all the time. I wanted to let you know that your not alone out there even though you say your parents ignore you sometimes. I think about other people like us with spine deformities all the time. I hope that you find a doctor that can help. I haven't been able to yet. I started taking warm baths at the end of the day and it helps me sleep better at night. I also use these menthol patches called Salonpas that seem to help. I try to use these to prevent taking medicine all the time. Try not to get angry with your family. Mine was the same way growing up. I don't think they understand because they're not going through it. They don't feel the pain. Good Luck!

amae28
08-03-2006, 10:08 PM
dear jadey,

my name is abbie, and i am almost 19 years old... i don't know how old you are but if your curves are in the twenties and you are not done growing, you should have an orthopaedic dr watching over your curves. I was done growing by the time i found out i had scoliosis, so i haven't had a brace or surgery, but the pain that i have, like you, has been going on for more than four years now.

first of all, when you go see your doctor, make sure he understands how much the pain is hindering your lifestyle, if it is... you could try going to a pain dr., and getting injections, but make sure if they are doing that that they are doing it under floroscopy because your body is unlike most patients they treat and some pain specialists are not used to scoliosis patients.

Also, your dr. will prolly want to make sure there aren't any underlying causes... a few years ago i was having excessive lumbar pain and i found out i had a bulging disk, which was treated with physical therapy.

I also have a TENs unit, which is like electrical stimulation, which helps sometimes but isn't something that can be worn all the time.

anyways, i hope that you get the answers you are looking for at your doctor's appointment,

good luck,

abbie

Jadey
08-29-2006, 10:24 AM
Hiya Amanda

Yeah warm baths really do help, and swimming too. I went to Egypt last months for two weeks and the walking in the first week and swimming in the second helped my back alot! Now that I am back at home with nothing to do until I start college my back has stiffened up so much again. This Friday I am seeing my Physiotherapist for the first time so I will be given help with exercising.

It's great to know that others out there do have the same problem as me, I felt isolated when I found out I had scoliosis.


Hiya Abbie

I am 16 years old so I have at least another 2 years of growing left. I have a Scoliosis Speciallist watching me at the moment, my next and posibally last appointment is at the end of November. I am scared because he said he may discharge me but what if my back gets worse, I'll have to start this all over again (going to doctors then seeing him again, took a year!)

I saw the doctors and she has refered me to a Physiotherapist. My appointment with her is this Friday, I am looking forward to it because I can finally get something done for the pain after 5 years of having to cope with it! When I done Child Development at school I remember hearing about TEN's, my teacher knew I had back problems and she suggested TENs would help, but my Mum being a Orphapaedic Matron disagreed which upset me. But I will tell my Physiotherapist about the option unless I am given anything else.


Thanks for the messages you two ^_^

Gailee
01-16-2007, 12:16 PM
I feel quiet depressed today.I am having lower pain on my left hip area.Im in tears with pain.This sucks.

lorrie
01-16-2007, 06:17 PM
Hi Jadey
I don't know where abouts in England you are but, in a lot of areas, there are specialist pain management clinincs available. If the physio doesn't help, it might be an idea to see if your GP can refer you to one.
Lorrie