Is surgery worth having?

[Pooka1]

EDITED

If a surgeon ever suggested to me that I or my kid needed bone taken from the iliac crest, I would ask them why, I would ask for evidence, I would ask about the risk of pain the rest of my life from that site, and then shop that opinion around with other surgeons.

[titaniumed]

Do NOT allow bone to be taken from your iliac crest. I think surgeons are moving away from that because of the high chance of pain the rest of your life.

The word has to be getting out by now.....How long has it been? It has to be over 10 years now....

Ed

[LindaRacine]

Surgeons are still using ICBG in some situations, for spine surgeries as well as other types of surgery. When they can't get enough local bone, and there is concern that the patient won't fuse, the risk of residual donor site pain is lesser than the risk of non-union.

--Linda

[Pooka1]

Okay but I know a person who claims the ongoing pain associated with the bone harvest site is much worse than anything associated with her back. She traded one bad pain for another which may or may not make sense. It scared me and I still would not allow it in my kids if faced with that.

[LindaRacine]

Okay but I know a person who claims the ongoing pain associated with the bone harvest site is much worse than anything associated with her back. She traded one bad pain for another which may or may not make sense. It scared me and I still would not allow it in my kids if faced with that.

As always, I would choose a surgeon I felt I could trust, and if the surgeon felt that I needed ICBG, I'd go along. :-)

[Pooka1]

As always, I would choose a surgeon I felt I could trust, and if the surgeon felt that I needed ICBG, I'd go along. :-)

I guess I wouldn't trust a surgeon who recommended iliac crest bone harvest. :-) Or at least I would get 3-4 other opinions before accepting that. And I'd want to see ever paper every written on the subject. Twice. :-)

By the way, Linda, can I ask if any of the people you work with do ICBG? How many a year?

[LindaRacine]

I guess I wouldn't trust a surgeon who recommended iliac crest bone harvest. :-) Or at least I would get 3-4 other opinions before accepting that. And I'd want to see ever paper every written on the subject. Twice. :-)

By the way, Linda, can I ask if any of the people you work with do ICBG? How many a year?

We don't actually track ICBG, as it's not a billable procedure (all systems and data are based on what's billable, unfortunately). I know I've seen it in notes occasionally, but I can't tell you how recent or how often. I'll try to track it for a bit.

I do agree, based on the literature, that no one should be routinely using ICBG (at least in the US). (We have to remember that there are places where there are no other options.) If there's a valid reason, and the patient is adequately informed, I think we need to be open minded about it. There's a bit of danger in warning a patient to never allow ICBG, or any other specific procedure for that matter, as we can't possibly know why the surgeon has recommended it. Instead, I think it's valid to suggest that the patient discuss the issue with their surgeon.

By the way, I had ICBG as part of my first surgeries, and have no pain at that site.

--Linda

[Pooka1]

There's a bit of danger in warning a patient to never allow ICBG, or any other specific procedure for that matter, as we can't possibly know why the surgeon has recommended it. Instead, I think it's valid to suggest that the patient discuss the issue with their surgeon.

I agree with this. I am going to edit my post to make it about what I would do as opposed to suggesting what others should do. And that people should get reasons from their surgeons for these things and get other opinions.

[titaniumed]

There sure are a lot of things to consider when making an “informed” decision.....We can pitch many balls across the plate for discussion and this forum is valuable in this respect.

Its not a scare tactic, its not lack of support, its reality....I want you to know that its “Shared Decision Making” which is a benefit.

Some videos from the “Informed Medical Decisions Foundation”

http://www.informedmedicaldecisions....ent-resources/

http://www.informedmedicaldecisions....cision-making/

https://www.youtube.com/watch?v=rs8MyqHGkFM


Ed

[Pooka1]

Those are good videos. As I understand it, they are trying to fully explain everything to the patients so the patients can partially own the decision.

Patients can't ask about the evidence case for pain at a bone harvest site if they don't know it is even an issue. Patients and parents can't push back on fusing compensatory lumbar curves in false doubles if they haven't seen the literature supporting selective T fusion and don't know that many surgeons do selective fusion.

You can't make an informed decision if you don't even know what to ask.

I am a lay person in the field of orthopedic medicine. But I can read the literature in this field enough to be able to ask a surgeon what exactly is being done and why. And I can get second opinions and ask each surgeon why other surgeons might differ among themselves on some point.

Most of all, patients should know that there isn't necessarily a consensus on many things involved with scoliosis. Just knowing that should trigger demands for a listing of what is not consensus-based and a full explanation of all procedures that are not consensus based. This also would show what is consensus-based (for example fusing large, progressive T curves in adolescents) so patients and parents don't have to struggle with things that don't merit the struggle.

[susancook]

While we as patients want to know exactly what will be done surgically, there are always decisions that are made intra-operatively. Xrays, CT, and MRI can give the surgeon a good vision of what the vertebrae probably look like and how the vertebrae move, but the actual visualization and movement of the spine can result in the surgeon making some modifications during surgery. Of course this must be within the limits of the consent. This may be more valid during surgeries that repair problems from previous surgeries. This is why having an experienced surgeon is so important.
Susan

[Lizardacres]

I agree with the 'never say never' approach. I had bone harvested from my iliac crest according to my operative report and if I had not requested a copy and read it, I would have never known. I have zero pain at the site. I don't remember it being discussed pre-op, but then again, there is a LOT I don't remember about the surgery. It may have been an operative decision as the #1 thing the surgeon told me after that I do remember is that my lumbar spine was 'mush', which he did not expect as my bone scan was deemed OK but not great (osteopenia), although they couldn't get a read on my lumbar spine during the scan due to the scoliosis. Maybe he decided it was something I needed for a solid fusion and was worth the risk. He is very conservative with BMP.

If you look at my post op xray, you can actually see where it was harvested.

[Tableone]

Have you considered that this is an implant surgery, and that everyone takes to the metal implants in different ways? Waking up from surgery and feeling metal rods in your spine is a most unpleasant feeling. Not everyone feels it, but many do. Also, how do you feel about never being able to bend or arch your back again? Depending on how many levels are fused, you will be able to bend from the hips, and you will have some movement under your fusion in your lower lumbar, but you will never be able to wake up in the morning and yawn and stretch/arch your spine again. You said you did modeling - try your different model poses without bending your spine forward or backwards AT ALL. Also no twisting, unless it's ONLY your shoulders, no arching your spine, even a little, to accentuate your chest as this won't be possible with a Scoliosis fusion. I can't tell you how many times I look in clothing catalogs going through pose after pose and miss the days when I could move like that. When you sit, your back will be perfectly straight - no more hunching - a physical impossibility after surgery, so it might be hard to get comfortable on a couch. Do you like dancing? Get a brace and try dancing without arching your back or swaying your hips; fusing the spine also means you will lose the ability to walk while swinging your hips, something I believe models do a lot.
I wish you the best. Your curve numbers are low; wish I could trade places with you!

[Stefandamos]

Steph, When you see your surgeon, also address your lack of kyphosis and lordosis. I would ask about restoration of these curves. Will he do anything special in regards to this like osteotomy? Your young, but ask.

Did he mention any fusion levels to you? or any other things like XLIF. Would it be a posterior only?

Where will the autograft come from? Or allograft? Will he harvest bone off your pelvis?

The scariest part for us is not knowing what is going to happen to us and when......We like to have direction and control, but that doesn’t always happen. I think to be happy, you want to swim with the tide, and go with the flow.

Ed

I will definitely be asking a TON of questions and will make sure to write all of these down ahead of time. Its definitely good to know what to ask ahead of time so I don't just go in blindly. Unfortunately, since my insurance changed, I have to wait to get my next set of xrays done to even talk to a surgeon. Even then, it will not be MY surgeon until the referral goes through.

[Stefandamos]

Have you considered that this is an implant surgery, and that everyone takes to the metal implants in different ways? Waking up from surgery and feeling metal rods in your spine is a most unpleasant feeling. Not everyone feels it, but many do. Also, how do you feel about never being able to bend or arch your back again? Depending on how many levels are fused, you will be able to bend from the hips, and you will have some movement under your fusion in your lower lumbar, but you will never be able to wake up in the morning and yawn and stretch/arch your spine again. You said you did modeling - try your different model poses without bending your spine forward or backwards AT ALL. Also no twisting, unless it's ONLY your shoulders, no arching your spine, even a little, to accentuate your chest as this won't be possible with a Scoliosis fusion. I can't tell you how many times I look in clothing catalogs going through pose after pose and miss the days when I could move like that. When you sit, your back will be perfectly straight - no more hunching - a physical impossibility after surgery, so it might be hard to get comfortable on a couch. Do you like dancing? Get a brace and try dancing without arching your back or swaying your hips; fusing the spine also means you will lose the ability to walk while swinging your hips, something I believe models do a lot.
I wish you the best. Your curve numbers are low; wish I could trade places with you!

To my understanding, I would be able to do a LOT of those things still. A lot of modeling does consist of twisting and hunching over into "relaxed" positions, but I don't think I'd be entirely limited in that regards. My curvature is primarily in the thoracic region, which doesn't so a whole lot of bending/twisting anyways.

Im sure the feeling of having hardware on my spine will take some getting used to but there is a high possibility that it won't be unbearable. I understand there are sacrifices to be made. However, that's the card I have been dealt. I have scoliosis and nothing I do/say will change it. I am just going into this with an optimistic mindset and hoping for the best.

Also, I've talked to people that go back into dancing and sports post-op. Wouldn't imagine why I wouldn't be able to do 90% of what I do now, excluding Hockey.

I appreciate the post, even if it is a tad negative. It's great to see all perspectives though. Thank you for that!