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burdle
05-23-2017, 11:46 AM
I don't wish to raise the old argument about 'whether Scoliosis cause pain' or not but I am intrigued by the posts on VBT websites which mainly involve operating on children. Most of the parents report their children in pain. So this must be a basis for the VBT procedure or at least one of them?

Pooka1
05-23-2017, 02:40 PM
Hi Hurdle. Nice to see you posting.

At least one surgeon has come out against the the claim that AIS in kids is necessarily painless. I think many large curves might be painful but people who don't know they have scoliosis may not register it so much.

Both my girls got into the high 50s but only the highly rotated one had any pain.

I suspect most smaller curves are not associated with any pain. Otherwise it is hard to explain all the cases of kids first diagnosed with large curves.

titaniumed
05-23-2017, 09:19 PM
I think many large curves might be painful but people who don't know they have scoliosis may not register it so much



Some thoughts on the pain question, thinking about pain, and diagnosis

My scoliosis was "just a curved spine" when I was a kid.....and even to this day its "just a curved spine" with my family....... I have reminded them by adding "Just a $2 million dollar curved spine" (There are other scolis out there that have walked in the same shoes as me. I try not to think about it too much because it sucks, but its ok, because we move on.)

My brother who is a 48XXXY, had a fun childhood as his doctors back in those days (early 1960's) really didn't have a clue, and as soon as his diagnosis came to light after a (Karyotype) things went downhill from that moment on. Being preoccupied with a really dark cloud is not healthy for the mind and his medications are powerful, really powerful and under a quack psychiastrist's control, and the court listens to him. (His trust)
Someone decided that heavy medications are the correct route, there is no arguing that....I tried, they wont hear it. I reminded them that there was a time when he didn't take medications, and have the diagnosis, and everything was fine. (I am not a doctor so I have no say, and he likes his meds....)

Ok, so depending on the age, person, mental makeup, and disease, do you diagnose as a "dark cloud", or lighten it up and state that there is no pain. For those that look for attention, "Oh my back hurts" can work well in this regard....."I want surgery, I want surgery, I want surgery".

Maybe this explains why scoliosis doesn't hurt as a child.


Ed

burdle
05-24-2017, 05:16 AM
Some thoughts on the pain question, thinking about pain, and diagnosis


Maybe this explains why scoliosis doesn't hurt as a child.


Ed
Yes but that's my point- practically ever kid on the VBT group who is having surgery is citing pain. No-one in these VBT groups is saying that there is no pain. They are all saying they have pain as one of the reasons that they are being offered surgery. Yet no-one is reporting that their surgeon is saying that you should not have pain.

burdle
05-24-2017, 05:21 AM
Hi Hurdle. Nice to see you posting.

.

Hi to you too! I must admit that I have been put off posting for a bit - this site seems to contain references to very old studies and there is still that interview on it where the surgeon says that Scoliosis doesn't cause pain which flies in the face of everyone I have met who has a 'real' scoliosis.

And I have had a rubbish follow up appt. In NHS they is no continuity - you rarely get to see a consultant - just a member of his team. my last follow up was a 4.5 hour wait and then I got a registrar who just ordered spect scan. It was just a fob off. I then get reviewed after this in Nov 17. I am lost sometimes in this world of pain!

Pooka1
05-25-2017, 06:00 AM
Hi to you too! I must admit that I have been put off posting for a bit - this site seems to contain references to very old studies and there is still that interview on it where the surgeon says that Scoliosis doesn't cause pain which flies in the face of everyone I have met who has a 'real' scoliosis.

And I have had a rubbish follow up appt. In NHS they is no continuity - you rarely get to see a consultant - just a member of his team. my last follow up was a 4.5 hour wait and then I got a registrar who just ordered spect scan. It was just a fob off. I then get reviewed after this in Nov 17. I am lost sometimes in this world of pain!

First I apologize for that auto-correct of your name, Burdle.

Second, is the reason you are treated this way because you are refusing surgery? In you ideal visit, what would happen?

richardis
05-25-2017, 06:42 AM
YES, it causes pain. Unfortunately surgery won't relieve your pain in full. To be honest (spinal fusion), for some will aggravate their pain. Some people just don't have pain, but they are at high risk of developing it.

It is a very legitimate question, Burdle. Of course, you are not inventing your pain nor begging for attention. Doctors who say that scoliosis causes no pain are simply telling patients a reassuring answer. Everyone who suffers from scoliosis would like to hear that - you can relax, scoliosis causes no pain.
It is simply not true.

Scoliosis causes pain.

Doctors who promise immortality, the elixir of youth, and the end of pain will always have a full waiting room, because medicine is all about giving hope to people. That's why people take the risk to go through surgery. For some, the risk is worth it and it pays off. For some, it doesn't.

Pain is a part of life, either if you have scoliosis or you have not. Unfortunately, people are hardwired to follow or to believe in people who say what they wanna hear. So, if it calms you down, scoliosis causes no pain.

If I were to have a magic wand, I would create and give myself a "normal spine". Just the feeling or the image in the mirror that tells you that something is crooked and you can't do nothing about it is devastating. That last sentence is sourced by my personal experience.

burdle
05-26-2017, 10:30 AM
First I apologize for that auto-correct of your name, Burdle.

Second, is the reason you are treated this way because you are refusing surgery? In you ideal visit, what would happen?

They are not recommending Scoliosis surgery. I as offered it 25 years ago when I had 1 curve and I was 30 years old. I refused the surgery.

Now I almost think I would go for surgery- but whether its cuts/resources I don't know but they keep telling me how dangerous surgery is ( like I DON'T KNOW). I keep seeing people who I feel know less than me about scoliosis- they make mistakes in mislaying my notes and they don't follow up. They tell me surgery probably won't help but there there is no 'plan' to help me with pain and issues resulting from the curve.

For example the last but one apt resulted in an MRI scan for bladder issues. When I went for a follow up it was not discussed. I bring it up and they seem uninterested. The last person I saw ordered a Spect scan with a view to doing more injections. But even these are not co-ordinated. I asked for some in my Sacrum joints but he has ordered l3/4. I had these done but they had no effect.

I wouldn't mind but it is 9 months between appointments - so we seem to go round in circles!

burdle
05-26-2017, 10:35 AM
YES, it causes pain. Unfortunately surgery won't relieve your pain in full. To be honest (spinal fusion), for some will aggravate their pain. Some people just don't have pain, but they are at high risk of developing it.

Doctors who say that scoliosis causes no pain are simply telling patients a reassuring answer. Everyone who suffers from scoliosis would like to hear that - you can relax, scoliosis causes no pain.
It is simply not true.


.

Unfortunately the ones who tend to say that are the ones who do not deal much with scoliosis. It does scoliosis patients overall a world of disservice whenever a doctor says this, because of the complexity of the condition itself. And it certainly should not be said to a patient who has been maintaining scoliosis for years.