What do I do?

[Kikki]

Hi everyone. I'm new here and not sure what to do or where to go to from here.

At the age of 11, I remember noticing that I could kick higher with my right leg. I was very active and did a lot of gymnastics. At the age of 15 or so, I noticed the pants on my jeans were shorter on one leg than the other. My mother took me to see a chiropracter at that time who advised me to "hang upside down" by my legs in an attempt to straighten my spine I suppose. I have had no bracing and no further treatment other than as an adult, getting massaged by a sports therapist occassionally and now I'm paying dearly.

I'm so horribly depressed because in my ignorance and because I was basically told that nothing could be done, I've done nothing and now, I am SO uncomfortable at times. My hip sticks into my ribs. I can't lie on my right hand side. I have pain down my legs. Would you believe that I hadn't even heard of surgery as an option until I came across this site?

So now, I'm trying to do something about it but I've come across nothing but the same sort of ignorance from the medical profession that is supposed to be helping me. Can ANYBODY tell me where to go? My doctor seems to be reluctant to send me to speak to a specialist but seems unsympathetic to my condition too. He's told me to go and see a chiro but my hopes are not pinned too high. Nevertheless, I've made an appointment for tomorrow and she told me that if it's genetic, then there is a chance that my kids will have it to and now, I'm MORTIFIED. I can't help but feel SO guilty. Guilty for possibly passing it on.... guilty for not doing something about my own..... angry at everyone who did nothing about it when I was a child.... and, worst of all, deformed and horrible.

I'm located in Melboure, Australia. What can I do?? I've found a couple of web sites that offer information but would you believe, I have to PAY for the privilege?!

I am 34.

[titaniumed]

Hi Kikki

Welcome to the forum.

There are quite a few of us that have been in the same situation as you. Years ago, they really didn't know too much, so don't feel bad about this.

You need x-rays shot so you can see how bad your curves are. The angles are measured using the "Cobb method".

I cannot believe that your Doctor is not sending you to a specialist. Did he shoot x-rays? The only way to find out where things are at is with x-rays.

I went and still go to a Chiropractor. You need a good one with experience with scolis.

At least get yourself a .75 meter diameter exercise ball. You can do stretches laying on your stomach and arching on your back. Its a great way to stretch things out and give some relief.

Hot tubs, hot baths, and massage are beneficial.

Start reading and posting. You came to the right place.
Lots of Aussies here also.

Ed

[jrnyc]

Hi Kikki
please please please...stop beating yourself up! the fault lies with the medical professionals (or unprofessionals) & NOT with you!!! and you have a right to a doctor who knows scoli...so...please do not accept less...your general doctor needs to refer you to a scoli specialist..if that means a surgeon, then that is where you should be referred...if it is a pain management doctor to see what all the pain is about, then that is a referral you need...probably both!

but first the Xrays & MRI's..any old doctor can order those be done....if your G.P. is not helpful, can you change G.P.? dont know how it works down where you live, but i hope you are allowed to change to a doctor who CARES about his/her patient & cares that you are in PAIN! you deserve that & i pray you can demand that level of care from the medical "professionals" where you live....

it is so unfair that some doctors play "blame the patient" or contribute to that game by not helping...not caring...not taking us seriously!!

i wish you the best of luck in your pursuit of quality medical care...write here often & many knowledgeable people on this forum can offer help & suggestions...some may know good scoli drs in your area!!

best regards
jess

[Kikki]

Thanks for the support and encouragement. I've had the x-rays done recently. My unsympathetic doctor DID order them and he said that he couldn't believe that I was able to carry 2 kids because the pressure on my back would've been enormous. He even went as far to say that he didn't think that my back would take another pregnancy. That's encouraging. :mad: Having said that, he also just left it at that.

I've heard of the Cobb method titaniumed but no measurements as such were taken so I have no idea how bad the curve is except by looking at it. I tried to post the x-ray on the forum but the 100kb limit was way too small for my 300kb photo. It was so saddenning to see the extent of the scoliosis for the first time.

Thanks jess. You're right - if he won't help me and take me seriously, somebody else will. It's true that he's referred me on to a chiro but as I said, my hopes are not pinned too high. She lost me when she told me that my scoliosis could be fixed without ever even looking at my back. :rolleyes:

[Vali]

Hi Kiki,
So sorry to read about your situation. I hope this unsympathetic doctor can at least guide you in the right direction for pain relief.
If you go to the Scoliosis Australia website, you will find six specialists listed for Victoria, I would suggest maybe getting a referral to a couple of them for their opinions. Take care.:)

[Kikki]

Thanks Vali but no such luck there. He told me to wait and "see what happens" with the pain. Mind you, the pain comes and goes but when it's around, I'm popping nurofen like there's no tomorrow to deal with it. I took that list of names with me when I went to see him but I didn't get the referral I was after. He seemed very, very reluctant to send me to see one of them since they're all surgeons and he seemed to want to steer me away from having the surgery. Personally, it's not something that I have ruled out but with two young kids, it's not an option for me at this point. I guess that I just wanted to speak to someone who could guide me and give me some advice.

Here are the pictures of my back. As I said there was no measuring as such but looking at it - is it really bad??

http://i665.photobucket.com/albums/vv16/kikki_bucket/x-Ray1.jpg
http://i665.photobucket.com/albums/vv16/kikki_bucket/x-Ray2.jpg

[CHRIS WBS]

It looks like you have a thoracolumbar scoliosis that should at the very least be monitored for progression. Not sure how your healthcare system works in Australia, but are your required to get a referral from your physician or can you make an appointment with an adult scoliosis specialist on your own?

I never cease to be amazed at the disconnect within the medical profession about current treatments available for adults with scoliosis. When I discussed with my PCP my decision to explore surgery, he seemed rather ambivalent and told me about a pharmacist patient of his whose wife was on a morphine pump as a result of problems associated with her scoliosis surgery…a surgery done 40 years ago. I think I’m his only patient with scoliosis. And maybe that’s why so many internists are not up to date on current treatments. They just don’t see too many of us who are surgery candidates.

Like you, I did not know surgery was an option for adults, and especially for those of us who are older, until I started researching on my own. I would forget about seeing a chiro, but if there’s any way you can get an appointment with a specialist on your own, that’s where I would begin. I wish you luck.

[Dingo]

Kikki

I've made an appointment for tomorrow and she told me that if it's genetic, then there is a chance that my kids will have it to and now, I'm MORTIFIED. I can't help but feel SO guilty. Guilty for possibly passing it on.... guilty for not doing something about my own..... angry at everyone who did nothing about it when I was a child.... and, worst of all, deformed and horrible.

You probably don't have to worry about passing Scoliosis onto your children.

The latest and largest twin study found just 13% concordance among identical twins (http://journals.lww.com/spinejournal/Abstract/2007/04150/Adolescent_Idiopathic_Scoliosis_in_Twins__A.17.asp x). Put simply if one identical twin had scoliosis the other had it just 13% of the time. That's very low.

Another recent study (http://pico.sssup.it/files/allegati/2004_1469.pdf) found that among children with severe Scoliosis that required fusion only a third had a relative who suffered from any type of back deformity. That doesn't argue for a strong, genetic component either.

Although genes might make people susceptible to Scoliosis it's clear that strong, environmental input is also required. So far nobody has been able to figure out what that is or even what to look for. The only clue is that it's something that causes pinpoint damage to the central nervous system.

[jrnyc]

Dear Kikki
the fault, dear brutus, lies with them...or whatever the quote is...anyway, the fault lies with the doctors...& ignorance! just looking at that curve, anyone could see the pain it might cause!
i dont know how it works in australia...here in the states, my insurance company says i can switch to any general physician i choose on their list of approved doctors...so i switch when/if i cant get what i need from my G.P...i had a great one in nyc, but she left practice to take care of her 2 young kids...then i had another who dropped insurance as soon as he got rich enuf! can you change general doctors in australia...cause if you could, then you might get some actual help...???? i think everyone here is right...you need a scoli specialist or 2...then after that i'd recommend a pain specialist!
i hope you can change your doctor, cause he sounds really difficult to deal with...& who needs more aggravation than scoli itself can give you!

best regards
jess

[gabs mum]

Hi Kikki,
We are in Queensland. We discovered our daughters scoliosis in Feb. I didnt expect the G.P. to be of any help so before we went I looked up as much information about Queensland orthopaedic surgeons specialising in the spine as I could.
Then I filtered it down to scoliosis specialists. I then tried to google the 5 or so names I had on my list for Queensland to see what information was available about them. I shortened my list to 2. I had found great information about these two and I had already made up my mind that i would settle for no less than two opinions for my daughter. So off we went to the G.P. and ordered an xray. The G.P. could not even see anything in my daughters back until i pointed it out. :(
Once we had the xray done we went back and had the names and addresses of the two specialists we wanted to see so that he could write out a referral for us. Basically you have to just about do it yourself. We had our referrals written then we went home and rang both specialists to make appointments.
We had to send our referrals and xrays to them so they could make the appointment according to severity(i think). The appointments were made and we saw both specialists and made our decision on who we were going to continue with after that. We chose Dr. Askin. He is a wonderful human being with so much expertise in scoliosis. Of course Victoria as well will have many wonderful spinal specialists. Try to get at least a couple of opinions and go with your intuition as to who you feel comfortable with.
If you are not in private hospital cover than try and get into one now. They are different but ours is a very basic level of cover and it still covers 'medically implanted prostheses' which is what they class the rods as.
But check with your insurer before you join. You will probably have to wait the 12months though to serve your "pre-existing ailment waiting period". Again check as this may vary from insurer to insurer.
My last suggestion which is what you are already doing is research this forum.
Everything you need to know is here. There are so many wonderful people on this forum that you will feel blessed that you found it.
Good Luck
Your fellow Aussie.

[gabs mum]

Try this link Kikki. There are scoliosis specialists listed here for each state.
A good place to start!
http://www.scoliosis.org.au/specialists

[Jimbo]

Through my experiences with this problem I have learnt that you MUST advocate for yourself and be stubbornly persistant to get any real treatment.

I see you are in Melbourne -

VIC Specialists
VICTORIAN CONTACTS/SURGEONS
The Scoliosis Clinic
Royal Children's Hospital.
Flemington
Road Parkville VIC. 3052
Tel: (03) 9345 5522
Fax (03) 9345 5447

Dr M.A.Johnson 25
Erin Street Richmond VIC. 3121
Tel: (03) 9428 4751

Dr I.P.Torode
Private Consulting Rooms
64 Chapman St
North Melbourne VIC.
Tel: (03) 9329 4937

Dr P.L.Turner 173
Lennox Street
Richmond VIC. 3121
Tel: (03) 9429 2233

Dr P.H.White
Suite G2, 173
Lennox Street
Richmond VIC. 3121
Tel: (03) 9428 2455

Mr Gary Nattrass
64 Chapman Street
North Melbourne
ph (03) 9328-1033

Make sure you get in contact with one of these guys. I think somebody here got surgery with Dr Torode and was quite happy with him.

Welcome aboard, this site is one of the most valuable resources for us :D

[debbei]

Kikki,

My heart broke for you reading your post. I was aware that I had scoliosis as a teenager, and was treated, but still it was a shock to me that I would ever have this surgery.

I'm sure the Australia folks on the forum here will be able to point you in the right direction. THere are quite a few of them! Once you find the right doctor, you will feel much more at peace with whatever decision you make. I just want to smack that GP that you've been seeing! :)

As far as your kids, (now here I am--the pot calling the kettle black), try not to worry about it too much. Your kids are young, and just have the pediatrician keep an eye on them. IF they do inherit this from you, my kids' doctor said that there is a very low chance of them progressing as far as I did. If you find something in them, you will get them treatment early, because you are now informed. There is nothing you can do about genetics, believe me, I've obsessed and felt so guilty myself.

Good luck, and stick around and ask any questions you may come up with.

[Susie*Bee]

Kikki-- I have 3 daughters, now ages 23-31, and none of them have scoli. You'll just have to wait and see-- but we pass along many problems to our children, not just scoli. Don't berate yourself over this.

[Kikki]

Thank you EVERYONE for all your support - I sincerely mean that to each and every one of you who has replied. I've listened to the advice, picked out a specialist from the list provided, made an appointment with him, went back to the GP (a NEW one.... with a much nicer bedside manner) and got myself the referral I wanted in the first place. I basically said "I've made my appointment, I'm not leaving without a referral this time" :)

I went for a visit to the chiro. She seems to think that she can help with it but it will take at least 6 months. I'm happy to give it a go but I still want to talk to the specialist.

Has anybody had any success with chiros? How has it helped you and to what extent has it helped?

[JenniferG]

Hi Kikki,

I was mortified when I read your post. I couldn't believe there still are GPs in Australia with such little knowledge of Scoliosis. I visited my GP who had never noticed my well-concealed curve, to tell her I thought it was progressing. She sent me for x-rays. When she saw the x-rays, she wrote me a referral to Dr. Askin. I was scared stiff at what may lie ahead for me, but as it turns out, it was my lucky day.

Dr. Askin did a wonderful job and I would recommend him in a flash.

However, you are not in Queensland and I'm glad to see you've got your referral and seem to have found a more up-to-date GP. Your curve needs monitoring at the very least.

I had two daughters (no problem pregnancies) and neither have scoliosis. I also have three grandaughters who's backs I am watching like a hawk.

Chiropractors may be able to help ease discomfort but they can't alter your curve. A good one should tell you this at your first visit.

You've found the right place to come for scoli info. There are some very knowledgeable people here and tons of experience. Good luck Kikki!

[jrnyc]

Hi kikki
i had no success with chiropractors...tho i have read on this forum that some have..i suspect mine had no experience with scoli....

i just wanted to point out to people...please try to remember the GOOD things you pass down to your kids...because there are many more good qualities that parents pass down than bad...& it is so true, you have no control over genetics...but if you can remind yourselves of the GOOD, you may realize that it way overwhelms any negatives there may be...not everyone passes down the scoli...it skips siblings (in my case), skips generations, etc...so please, dont spend time beating yourselves up...just do what needs to be done medically for your kids...

there...lecture for the day over! i just hate to see folks beat themselves up over things beyond their control! must be the social worker in me :)

jess

[Franny]

]Dear Kiki,

My experience was much the same as yours. Living in the U.K. my mother never believed me when I said my skirts were longer one side than the other and so on. Only when I moved to Oz and then had a fall at 27 did my problems begin. I'm now 61. Two things. Firstly I've had three children and none have scoliosis despite extreme monitoring by their mother! Secondly I'm not keen on chiros having been put in hospital by one who was a friend of my first husband, a doctor. He pulled me round before examining me. I would also not trust anyone who says they can fix your curve. Remember the adage if it sounds too good to be true and so on. I do wish you luck and if you want to chat I live in Cairns. I also went to see Dr Askin recently but he didn't offer anything so am now back to physio.

Good luck and it's GREAT to have found this forum. Thank you everyone for your input.

[JenniferG]

Franny, does this mean that Dr. Askin feels surgery won't help you? I am so sorry to hear that, if that's what you mean.

Kikki, I would love to know how you got on at your specialist's appt.

[Christl]

I am a little late on this one, you've gotten lots of good advice.

Chiro helped keep my daughters pain to a minimum before her surgery, so I have to say a good chiropractor can only be a benefit.

Someone posted something about a study, and only a low number of kids that progressed to surgery had a family member deformed by scoli. I don't count on studies like that. I have a curve that can barely be called scoliosis, but it is definitely a curve. Based on xrays from over 12 years ago it measured 13 degrees with obviously no noticeable deformity. As you see above my daughter had surgery. If she hadn't by chance developed scoli and needed surgery no one would have ever have heard of mine. I believe there are kids that could have gotten it genetically and there is just no way to tell.
What I am getting at is, just keep track of your kids backs. If something hurts or looks out of sorts be concerned(don't panic) and check into it.