Is my back pain caused by scoliosis?

[christieuk]

Hi Caz. I came across your posting by accident when I was surfing for answers regarding my scoliosis.

I will tell you that I was diagnosed at 13 (now 52), did all sorts of stretching, heat therapy and even sleeping with a pillow under my lower back - all of which did nothing.

At 21 I was diagnosed as "stable" and "not bad enough" for surgery which 31 years ago was a whole lot worse than it is nowadays and discharged. However after two children and into my mid-30s the back pain worsened and I asked to be referred back to hospital (RNOH in Central London). My new consultant confirmed that indeed the curves had worsened even though your spine is meant to be fully developed by your early 20s and that I was a candidate for surgery at the age of 39. I had an anterior release performed with implementation from T10-L2 (my main curve). The thoracic spine was not straightened during this procedure.

13 years on, Im wondering now just how much that curve has progressed. The reason for my surfing now is that I have scapula, left shoulder pain and neck pain which with my history Im unclear whether this is referred pain or just independent "old age" pain.

The point of my history and reading your story, if I were you I would very firmly ask to be referred to an orthopaedic consultant who specialises in scoliosis. This may mean travelling and I would highly recommend the RNOH who see hundreds of patients a year with scoliosis. The physio you are doing will help the pain, but it will not change to biomechanics of your spine permanently.

christieuk

[caz]

Christie - many thanks for taking the time to reply. I particularly appreciate it just at the moment as my physio discharged me yesterday because the treatment she has been giving me over the past few months hasn't helped. I'm no better off than I was the first time I went to see her and she has confirmed that because the problem is structural, she can't do anything to help. I have to say though that she was fabulous - very professional and caring and seemed genuinely disappointed that she hadn't been able to help me.

So she told me to go back to my GP and ask to be referred to a pain clinic. I had accepted this and wasn't going to press to get referred to a scoliosis specialist, but after what you have said, maybe I should be more pushy and demand to see a specialist. I suppose I don't want to be seen to be making a fuss, especially since the doctors I've seen to date have been so unsympathetic and unhelpful - I am a bit wary of going to a consultant and him telling me not to be so silly because my scoliosis isn't 'serious'...although it is serious to me because the pain it gives me has a big impact on my life

Maybe I just need to be more assertive and not let these doctors intimidate me!

Thanks again and I hope you get some relief for your symptoms too.

[christieuk]

Hi Caz.

Im sorry to hear that your physio has had to discharge you, but it isnt unsurprising.

As for not wanting to be pushy or worrying that a consultant saying your silly - this shouldnt happen. No self respecting surgeon should make you feel silly for wanting answers. You have pursued other avenues and nothing appears to help, so it is your right to know if there is a surgical option for you.

I have a feeling that you need to get a proper xray done and measured by a specialist scoliosis consultant so that you will have peace of mind at least one way or the other. You would be surprised how little the outside symptoms reflect the interior size of the curve(s). You certainly have all the markers. You may not be a candidate for surgery yet, but will be kept under annual review until they are certain that it has stopped moving. Mine was 14 years ago as I said, so they may have other options for you including a specialist pain clinic if surgery isnt the option.

FYI My youngest son developed a large thoracic curve 6 years ago at 15, it measured somewhere in the 80s which is huge. Needless to say he was escalated to the front of the queue for an operation and his fusion is much longer than mine - T2 or thereabouts down to L4. On xray his spine is now beautifully straight albeit held in place with rods and bolts. He leads an active life (perhaps more than his surgeon would like) and is currently sleeping in a tent for a week for the Reading Festival.

Caz you have nothing to lose and everything to gain by seeing the right person.

All good luck to you

Christieuk

[caz]

Christie - what a lot of sense you talk! You are right, I really have nothing to lose by getting this checked out properly, so I will take your advice and ask my GP to refer me. And if it turns out I'm not a candidate for sugery, then there is the pain clinic option...

Your son sounds like a very plucky and determined young man - great to see he is getting on with his life, despite the rods and bolts holding him together!

Thanks again - you have given me back some hope I'll come back here and let you know how I get on...although I would imagine that the waiting list to see a specialist must be a pretty long one for a non-urgent case like mine, so I don't reckon that it will be any time soon!

[christieuk]

Hi Caz - i am so pleased you felt my advice was helpful. Whereabouts are you in the UK? If you are in London or Home Counties, press for the Royal National Orthopaedic Hospital in Bolsover Street, London. The main hospital is in Stanmore, Middx where I think they also do outpatients. Im aware that patients come from all over the country to attend there and I cant praise them highly enough (my son's was done there too). Kick up a stink if the PCT wont let you go there.

The waiting list isnt too long as I understand it, may be a couple of months. I work in the NHS and there is something called an 18 week pathway which means you should be seen during that period.

So all hope to you and do let me know how you are get on.

Best wishes
christie

[neuromuscular]

Dear caz,

Before you go father, please consider this.

The pelvic bones are the base of the spine as they interact with the sacrum.

Many with scoliosis have greatly differeing pelvic angles which make it impossible for the spine to remains straight.

Find the ASIS landmarks on your pelvic bones. Stand in front of a mirror. Put your right finger on the right ASIS and the left finger on the left ASIS. Next widen your foot postiions to 30 cm, 60 cm, 90 cm, 120 cm or to the extent of your ability. Do the innominate bones of the pelvis (the ASIS landmark) move superior or inferior to each other?

If they do then you may have what I term as APAS, asymmetric pelvic angle syndrome. This is the subject of a new research paper and will be published in about 6 months.

If you can go back to a physio, have them palpate the adductor longus on the left. If it is very tender then it is one of the distorting factors to you pelvis.

Please contact me with how your pelvic bones move in relation to each other.

Best regards,

Neuromuscular

[neuromuscular]

Hi Caz.

Im sorry to hear that your physio has had to discharge you, but it isnt unsurprising.

As for not wanting to be pushy or worrying that a consultant saying your silly - this shouldnt happen. No self respecting surgeon should make you feel silly for wanting answers. You have pursued other avenues and nothing appears to help, so it is your right to know if there is a surgical option for you.

I have a feeling that you need to get a proper xray done and measured by a specialist scoliosis consultant so that you will have peace of mind at least one way or the other. You would be surprised how little the outside symptoms reflect the interior size of the curve(s). You certainly have all the markers. You may not be a candidate for surgery yet, but will be kept under annual review until they are certain that it has stopped moving. Mine was 14 years ago as I said, so they may have other options for you including a specialist pain clinic if surgery isnt the option.

FYI My youngest son developed a large thoracic curve 6 years ago at 15, it measured somewhere in the 80s which is huge. Needless to say he was escalated to the front of the queue for an operation and his fusion is much longer than mine - T2 or thereabouts down to L4. On xray his spine is now beautifully straight albeit held in place with rods and bolts. He leads an active life (perhaps more than his surgeon would like) and is currently sleeping in a tent for a week for the Reading Festival.

Caz you have nothing to lose and everything to gain by seeing the right person.

All good luck to you

Christieuk

Dear Caz:

While this would appear to be a great success report for this operation. Please read the facts on surgery before you conscent.

The success rate for surgery is only 30 to 35 % and pain relief is not always the criteria. Read on the Harrington or other rod implants before you decide. ( Dr. Hamilton Hall lecture 2004, November 12 at U of Alberta Corbett Hall. There are other sources.) As an adult they are usually more cautious.

My cousin had the operation and promptly broke the Harrington rods that were placed in her back.

The reduction of pain by Harrington rod or other rod implants is very poor. The return to structural normal is greater.

Check your pelvic bones by the test I have stated in the other reply. If this is off, then your physio possibly missed the role of the pelvic distortion in your problem and could have tried to treat the effect instead of the cause. Try another practitioner.

Contact me with your assessment of the pelvic bones position.

Best regards,

Neuromuscular

[caz]

neuromuscular - many thanks for your replies. When you say 'ASIS landmarks on your pelvic bones' , can you tell me exactly where these are? Sorry for my ignorance!!

This may well be the problem, because one of my physios did say that my pelvis was 'twisted' - the left side backwards and the right side tilting forwards. She had tried to manipulate my pelvis and gave me exercises to try to get it to 'hold' in place but this didn't work, so I was discharged yet again.

I must say my feeling is that the pain is coming from the pelvis rather than the spine (even though both doctors I've seen seem to think it is caused by a bulging disc!)

Anyway, I have now had an MRI scan and am waiting for the results to come back - maybe (hopefully!) I will have a better idea of what is going on once I get the results.

Thanks for your continued interest and advice.

[neuromuscular]

neuromuscular - many thanks for your replies. When you say 'ASIS landmarks on your pelvic bones' , can you tell me exactly where these are? Sorry for my ignorance!!

This may well be the problem, because one of my physios did say that my pelvis was 'twisted' - the left side backwards and the right side tilting forwards. She had tried to manipulate my pelvis and gave me exercises to try to get it to 'hold' in place but this didn't work, so I was discharged yet again.

I must say my feeling is that the pain is coming from the pelvis rather than the spine (even though both doctors I've seen seem to think it is caused by a bulging disc!)

Anyway, I have now had an MRI scan and am waiting for the results to come back - maybe (hopefully!) I will have a better idea of what is going on once I get the results.

Thanks for your continued interest and advice.

Dear Caz

You will have to go to an anatomy chart to see where these are. It is too difficult for me to describe these. There are skeletal and muscular charts which have these shown.

When you can landmark these hold a finger on each, stand in front of a mirror and take a widening stance from closed to 30 cm, 60 cm, 90 cm and wider. Each position must be a complete stop.

Note if one moves inferior to the other.

Then take this information to a practitioner of your choice.
his should proide valuable inforfmation onyour condition.

Usually the right moves inferior to the left, but you could be the one in one thousand that does fit the norm or the one in 11 that had both move equally.

Best regards,

Neuromuscular

[Lynz]

Dear Caz:

The success rate for surgery is only 30 to 35 % and pain relief is not always the criteria. Read on the Harrington or other rod implants before you decide. ( Dr. Hamilton Hall lecture 2004, November 12 at U of Alberta Corbett Hall. There are other sources.) As an adult they are usually more cautious.

My cousin had the operation and promptly broke the Harrington rods that were placed in her back.

The reduction of pain by Harrington rod or other rod implants is very poor. The return to structural normal is greater.


Neuromuscular

i'd just like to add my experience of having scoliosis surgery! unfortunately i was one of the unlucky ones who needed surgery in my teens (13 to be precise). My curvature degree was 98 before surgery and was reduced to just 45 after surgery. I no longer have any back pain and look as straight as anyone else! I have also had my rods in for 7 years now with absolutely no problems and i also know plenty of people who haven't had any problems with them!

i have not taken part in things like gymnastics and contact sports as i was advised not to by my consultant, however, i have been on rollercoasters, i own a motorbike and i do part take in activities i shouldn't lol

i think it depends on the individual but my consultant assured me it would be very unlikely that my rods would break or that i would ever need them removed.

i do agree, however, that people have said its not done for pain alone, the surgery is very long and the recovery isnt exactly easy!!!

if you can cope with the pain without resorting to surgery i would, its changed my life but i was told that as my curvature was so bad (had tipped my heart and restricted my breathing) that i probably wouldnt have survived!!

[neuromuscular]

i'd just like to add my experience of having scoliosis surgery! unfortunately i was one of the unlucky ones who needed surgery in my teens (13 to be precise). My curvature degree was 98 before surgery and was reduced to just 45 after surgery. I no longer have any back pain and look as straight as anyone else! I have also had my rods in for 7 years now with absolutely no problems and i also know plenty of people who haven't had any problems with them!

i have not taken part in things like gymnastics and contact sports as i was advised not to by my consultant, however, i have been on rollercoasters, i own a motorbike and i do part take in activities i shouldn't lol

i think it depends on the individual but my consultant assured me it would be very unlikely that my rods would break or that i would ever need them removed.

i do agree, however, that people have said its not done for pain alone, the surgery is very long and the recovery isnt exactly easy!!!

if you can cope with the pain without resorting to surgery i would, its changed my life but i was told that as my curvature was so bad (had tipped my heart and restricted my breathing) that i probably wouldnt have survived!!

Dear Lynz;

I am glad for you that yours was successful.

The pamphlets and information available that one patient of mine brought in suggested that less than one third will get pain relief benefits as would the lecture by Dr. Hamilton Hall.

Surgery is very important for those who it will benefit. My caution is that the patient make an informed decision.

Best regards,

Neuromuscular

[Lynz]

Totally with you on the idea of her making an informed decision (i'm a third year medical student), just wanted to add my positive experience so she can see that there might be a light at the end of the tunnel from having surgery!

to be honest when i had my op, i had the best guy in the country as one of my consultants, so maybe i was lucky with my surgeons!

let's hope that someone can lessen her pain, its not nice to have back pain!

[neuromuscular]

Totally with you on the idea of her making an informed decision (i'm a third year medical student), just wanted to add my positive experience so she can see that there might be a light at the end of the tunnel from having surgery!

to be honest when i had my op, i had the best guy in the country as one of my consultants, so maybe i was lucky with my surgeons!

let's hope that someone can lessen her pain, its not nice to have back pain!

Dear Lymz,

I could not agree more. I was told as a youth with back pain by a surgeon that unless I had the surgery, I would be in a wheel chair in ten years. That was 1977.

I am not in a wheel chair and very much mobile.

A physical therapy worked for me and numerous patients that I have seen.

However, that is not everyone as I have had less than one per cent that did need surgery. The problem as I see it with the physical approach is that assessment has to come a long way.

Hope you time as a med student is productive and all you hoped for.

Best regards,

Neuromuscular