Scoliosis Support Group

Dr. Stitzel,

I think the purpose of a 'support' group is exactly that: to give emotional support to people in extremely stressful situations while they try to make the best decisions that they can in their situation. This forum definitely veers into the area of advice often, but to criticize its members for choosing the 'wrong' answer, in your opinion, is in my mind not appropriate for this venue.

You state that 'trading deformity for dysfunction is a bad trade.' I don't know if you are deformed, but if not, I think that you have no place making a judgement like this. It's up to every individual to make these decisions for themselves. And you're saying this categorically to people you've never even met. And at least to some extent deformity=dysfunction in our environment.

You have every right to spread the word about what you believe to be a more appropriate treatment than surgery for AIS, but you're sounding preachy, and I'm not sure everyone appreciates that. Perhaps this is not the place to take such a tone...

I'm only attempting to bring balance to the conversation. My comment in regards to trading "deformity for dysfunction in terms of being a bad trade" is (while accurate) only my personal opinion based on the review of hundreds of peer reviewed articles, not the personal and emotional feedback of individuals.

I feel the tone of any scoliosis support group should center around encouraging patients to make every attempt to find a non-surgical solution to treatment of their condition and a universal agreement that sugical intervention should only be a choice of last resort.

Change is always a painful and messy process. Revolutions always are, however, the status quo will never change if people sit on the sidelines and keep their heads down.....even though they have the knowledge and information to know better. An effective non-surgical solution to the treatment of scoliosis has yet to come to the forefront, because the patients haven't demanded a better way. I believe most patients don't even know enough about the topic of scoliosis surgery to know they even need to find a better way. (the research supports that too)

I am only attempting to create a sense of urgency and demand for the medical community to come up with a better way than fusing 18 of 24 moveable vert. in someone's spine. The consequences of that procedure have to have a significant impact on one's spinal health in the long-run. The research strongly suggests that it does. I will throw myself upon a sword and endure the critizism if it forces people to address the brutal facts of reality and demand a better way. Only when the people demand a better way will we have one.

I am a busy guy. I don't need to spend time on forums attempting to provide "the other side of the coin" to patients whom won't find it elsewhere.

Now that is support.

BRAVO to you JackedUpBack!!!
I am so sick and tierd of reading the post day after day of Dr.Stitzel and his opinion of everyone on here and what "mistakes" anyone who has had or will have surgery will be making. It's great to give an opinion, an imformative one ,but this last post about crabs in a box is WAY too much! So thank you for standing
up to everyone!!!
And for Dr.Stitzel to say choice of surgery should be a last resort....
that not the case for everyone and no of your business to constantly be telling everyone DONT do it!
OK to give some advice but we're all, at least me,,, sick of it!!
GIVE IT A REST Dr. STITZEL!
Let people give their opinions and advice and questions without you over ruling with your "opinions" and trying to scare everyone out of a dicision that's NONE of your business!

And I disagree that your a busy person... you sure spend alot of time on here!

I posted this under another discussion, but thought I need to post it here as well since the other discussion was from a few months ago...

Ok Doc. Clearly you do not have a spinal deformity and do not realize what we go through. You say there needs to be another way....then what is it??? What is your suggestion for us patients that have a spinal disease that is getting worse every year. If you have 2 curves (one 50 degrees and the other 52 degrees)that are progressing at 2 degrees every year and listhesis is also occurring, then what do you do to fix it? I have tried spinal injections to help with the pain, but that does not stop the fact that my spine continues to curve. I am sure many people have tried the same alternative solutions that I have and they don't result in a permanant solution. I know I speak for more than myself when I say this has nothing to do with vanity at all. We need a solution to our pain....and to just say that there need to be a different solution means nothing. We need a way now, not in 5-10 years.

Just out of curiosity, what type of doctor are you?

Hi,

I think you should realize that your situation may not be the same as everyone else's and anecdotal information as well as some journal articles is not the solution for all. Many of us are quite satisfied with the result and some of us have had to choose surgery to save our lives, a very significant decision at any age but especially at the age when these types of operations are done.

I never felt "deformed" and loath the term. I was me and I serve on a variety of boards helping people with disabilities and we never use that term. If you think you are deformed, you are! This is not suggesting one does not have a serious medical condition that MUST be addressed or in many cases, several, but I do not believe in the notion that my situation or my knowledge of scolisois/kyphosis/kyphsoscoliosis gives me the right to tell others what to do. They have to make a decision for themselves.

I am sorry you had a bad experience with Harrington rods or with spinal fusion. However, as stated previously, not all doctors not all hospitals nor even all research is equal! Even th best surgeons face daunting challenges. (I know when I had one operation - not a fusion but a precursor to it, a young woman not too much older than me paralyzed and later died and I survived. There for the grace of God go I, essentially, and I am thrilled every day to be alive and I'd say that even if I could not walk. I never traded deformity for dysfunction. I traded a serious year long tenure of multiple operations and halo femoral traction for the ability to walk, live and do what I wanted to do with my life. Without that surgery, I would not now be here!

I am not being critical - just suggesting we are all unique individuals with different types of problems. Congenital scoliosis is more severe than idiopathic scoliosis which tends to appear at puberty and every individual needs to make the best decision for him or her. There is no one size fits all here so while I think I understand your opinion (though not the reason for the negative feelings about spinal fusions), I would implore you to allow others the benefit of their own opinions as well.

It can be very stressful and one individual (doctor or not) preaching one's ideas is not always the best solution. The best we can do is share our knowledge, support, kindness and hope!

I don't understand why everyone is giving Dr. Stitzel a hard time. He is just stating his opinion and is obligated to that. If you don't like what he posts then why are you even reading it.
Sure there are some stuff that i disagree with him, but i don't need to rant on and on about it. I've learn that there are some opinions that you need to keep to yourself and not stopping someone from doing what they want to do or in this case, think what they want to think.