Is surgery worth having?

[Pooka1]

Went in for x-rays yesterday and had a very scary reminder. In 2009, I had one thoracic curve of 10 degrees. In 6 years time I have developed a 45~ degree Thoracic curve and a 32~ degree lumbar curve.

I will be getting the results of my x-rays on my next appointment on the 28th. Will keep everyone updated as to what the doctor says about surgery. Since I'm at a new hospital, they refuse to refer me directly to the neurosurgeon. For now, it's a waiting game.

That's very good that you have a new set of radiographs.

I am just curious why you chose a neurosurgeon instead of an orthopedic surgeon? I know neurosurgeons do spinal fusions but I assume orthopedic surgeons do more of them and therefore probably have more experience.

Is it possible for you to get the radiographs on a disk for your records? It is good if you have a record of your curve in case you move or change doctors.

I have all the radiographs for my daughters on disks and they come with a short radiologist report about the measurements. The measurements often disagreed with the surgeon's measurements which was interesting.

Good luck, Stefan.

[susancook]

Looks like you were correct about the dramatic change in your thoracic curve. Yes, there is a waiting game for elective spinal surgery. For those waiting that are in great pain, it can be torture. But, I think that it gives you time to think about your decision and to be certain that it is the correct decision.

Meanwhile, read a lot! Did you purchase the book on scoliosis surgery?

Are you married or partnered? If so, what does your partner think about your thoracic curve and possible surgery? Do you live with anyone that can help you after your surgery? Where do you live?

Take care. Susan

[Stefandamos]

That's very good that you have a new set of radiographs.

I am just curious why you chose a neurosurgeon instead of an orthopedic surgeon? I know neurosurgeons do spinal fusions but I assume orthopedic surgeons do more of them and therefore probably have more experience.

Is it possible for you to get the radiographs on a disk for your records? It is good if you have a record of your curve in case you move or change doctors.

I have all the radiographs for my daughters on disks and they come with a short radiologist report about the measurements. The measurements often disagreed with the surgeon's measurements which was interesting.

Good luck, Stefan.

I didn't make that choice. It's what my general doctor referred me to. I am hoping to get a referral back my ortho because he knew A-Z about scoliosis whereas these people seem to be clueless.

I am getting a copy of the radiographs when I go in for my next appointment. They will also have a copy of my old ones for my own sake.

[Stefandamos]

Looks like you were correct about the dramatic change in your thoracic curve. Yes, there is a waiting game for elective spinal surgery. For those waiting that are in great pain, it can be torture. But, I think that it gives you time to think about your decision and to be certain that it is the correct decision.

Meanwhile, read a lot! Did you purchase the book on scoliosis surgery?

Are you married or partnered? If so, what does your partner think about your thoracic curve and possible surgery? Do you live with anyone that can help you after your surgery? Where do you live?

Take care. Susan

I feel very fortunate to not be in severe pain but I definitely feel like my condition is steadily worsening. I am continuing to think about but it has been putting a great deal of stress on me. It's on my mind 24/7, to the point where I'm having dreams about recovery.

I did not purchase the book because of my current financial situation. Still figuring out how to pay for school supplies for the classes I already have.

I am not married but I do have a significant other who I see very often. My partner knows I have scoliosis but she said she can't even tell and doesn't have much of an input into the surgery. Anytime I discuss this with people they tend to give the same response, "You'll be okay".

I currently live in a guest house at my grandparent's house and they would definitely be assisting. My mother, father, aunt, uncle, sister and bestfriends have all stated they'd be there for me 100%. Including financially. So I'm not too concerned about that. I live in Los Angeles though and everyrhing is incredibly accessible to me.

[titaniumed]

Anytime I discuss this with people they tend to give the same response, "You'll be okay".

They are right you know.....

Don’t let this take over your mind...... If you didn’t have a surgical choice in the matter, it would be a different situation. If you have no choice but acceptance, then you accept.

You do have time.....and maybe some day you will have surgery, it could be years from now, so stressing over it “now” just isn’t worth it. Better off to delay that stress to a later date. I waited 34 years and had a ton of fun. Some patients pop in here with jaw dropping (100 degree plus) curves, the exact opposite, mainly because they didn’t know or were misinformed.

Your selection for your initial surgery is extremely important.....The surgeon YOU hire, not the surgeon your GP selects should be one who has trained through the main scoliosis training centers. They hang at UCSF, HSS, TCSC, and in St Louis.....usually at the coffee pot. (scoliosis forum joke) You can look at their CV’s on their web pages. SRS docs are nice, but not a necessary thing....

If you don’t have pain now, you will learn about surgical pain in an abrupt sort of manner. I could imagine that would be quite a shocking thing and if avoidable, that would be best. Nobody wishes pain, but for scolis that live and have major pain for sometime have the advantage since they are used to it, and any improvement through surgery is a bonus.

I would highly suggest getting a 2nd opinion before setting any dates. Go and visit Dr Pashman and see what he says.

For his take on using anyone but a scoliosis surgeon, please read this link

“Little skill is necessary to produce a spinal fusion. Significant skill is necessary to recreate spinal balance”
http://espine.com/why-a-spine-surgeon/

Ed

[LindaRacine]

Back to the iliac crest bone graft debate...

http://www.beckersspine.com/spine/it...orrection.html

[titaniumed]

Where were we? I think Sharon was referring to lingering pain from ICBG in which there is plenty of material about this....depends on the study and depends on what timeframe.....

One thing is for sure, it involves extra surgery which weighs heavily......

On the subject of extra surgery, I do have irritation from my ALIF incision at my waist line and don’t wear belts anymore......I am past 7 years, and not a pain issue really, but something to consider since it was a change I didn’t expect. It might seem like a little thing, but these little things do add up and have to be considered in the decision making process. Clothing laying over scar tissue “can” be an issue.

I donated thousands in clothing after my surgeries because of changes from scoliosis surgery. My waist increased by 2 inches immediately so ALL my pants didn’t fit. All my shirts now are ones that hang over the waist and not tucked in. All my belts didn’t fit.

I don’t think I have ever mentioned this here.....

Ed

[Pooka1]

I am shocked they are using iliac crest bone on children. They have their whole life ahead of them and they don't tend to be osteoporotic.

I dodged bullets with my kids that I didn't even know I was dodging. This sort of thing can keep you up at night if you are not careful. Parents like myself come into this in such a clueless state it is scary, expecially in hindsight.

[leahdragonfly]

I had iliac crest bone harvested and used in 1984 during my L4-S1 fusion for spondylolisthesis. I was 17 years old and we were given no option, but that was a long time ago.

I always assumed this bone just fills back in and heals over, but the comments above make it sound like the bone removal is permanent. Does anyone know for sure? I know bone generally remodels after insults and heals over.

[Pooka1]

I had iliac crest bone harvested and used in 1984 during my L4-S1 fusion for spondylolisthesis. I was 17 years old and we were given no option, but that was a long time ago.

I always assumed this bone just fills back in and heals over, but the comments above make it sound like the bone removal is permanent. Does anyone know for sure? I know bone generally remodels after insults and heals over.

Thanks for mentioning that, Gayle. I am so happy you don't have pain at the harvest site. I am just reacting to an online friend who said her ongoing pain at the harvest site for years was worse than the pain from her back before fusion.

I hope this next surgery is your last. You really deserve to catch a break.

[LindaRacine]

Thanks for mentioning that, Gayle. I am so happy you don't have pain at the harvest site. I am just reacting to an online friend who said her ongoing pain at the harvest site for years was worse than the pain from her back before fusion.

I hope this next surgery is your last. You really deserve to catch a break.

Good question Gayle. If I had guessed, I think I would have said that it doesn't grow back, but I just pulled up my xrays and it looks like mine at least partially grew back.

Iliac Crests.jpg

The graft was taken from my right side (the side opposite the iliac screw).

I'll try to remember to ask some of the docs.

--Linda

[titaniumed]

I always assumed this bone just fills back in and heals over, but the comments above make it sound like the bone removal is permanent. Does anyone know for sure? I know bone generally remodels after insults and heals over.

Gayle, Here is a little something about posterior “iliac crest regeneration” on a 70 year old......Restoration is possible, histological analysis showed mature bone at 18 months.
https://www.hss.edu/professional-con...ft-harvest.asp

The grafting subject is an interesting subject.....many sites are used throughout the body for different reasons. The quest for alternative grafting materials wouldn’t have happened if everything ran smooth all the time.....

I think that maxillofacial skull and head reconstruction and grafting off the skull (cranial grafting) would have me a bit concerned to say the least. In France, they rebuilt Princess Diana’s driver’s skull after the crash under that bridge.....This is about as serious as it gets.

I almost want to say that I would do scoliosis surgery any day.....but its not that simple.

To have our surgeons when we need them is a gift, and my appreciation leaves me speechless. Christmas gifts come once a year, not everyday.

Ed

[Stefandamos]

They are right you know.....

Don’t let this take over your mind...... If you didn’t have a surgical choice in the matter, it would be a different situation. If you have no choice but acceptance, then you accept.

You do have time.....and maybe some day you will have surgery, it could be years from now, so stressing over it “now” just isn’t worth it. Better off to delay that stress to a later date. I waited 34 years and had a ton of fun. Some patients pop in here with jaw dropping (100 degree plus) curves, the exact opposite, mainly because they didn’t know or were misinformed.

Your selection for your initial surgery is extremely important.....The surgeon YOU hire, not the surgeon your GP selects should be one who has trained through the main scoliosis training centers. They hang at UCSF, HSS, TCSC, and in St Louis.....usually at the coffee pot. (scoliosis forum joke) You can look at their CV’s on their web pages. SRS docs are nice, but not a necessary thing....

If you don’t have pain now, you will learn about surgical pain in an abrupt sort of manner. I could imagine that would be quite a shocking thing and if avoidable, that would be best. Nobody wishes pain, but for scolis that live and have major pain for sometime have the advantage since they are used to it, and any improvement through surgery is a bonus.

I would highly suggest getting a 2nd opinion before setting any dates. Go and visit Dr Pashman and see what he says.

For his take on using anyone but a scoliosis surgeon, please read this link

“Little skill is necessary to produce a spinal fusion. Significant skill is necessary to recreate spinal balance”
http://espine.com/why-a-spine-surgeon/

Ed

I've put the effort towards not stressing about it but it's very difficult. I'm torn between waiting or just going for it. I would love to not worry about the physical appearance of my back and be able to actually go to the beach or sit in a chair without feeling out of place.

On the other hand, the surgery could potentially put me in pain for life or at least increase my chances of severe pain later in life. I'm at the point where my last surgeon put the decision in my hands. Sometimes I wish it was more severe so that I didn't have the option to wait for the surgery.

I am not limited in any way to the activities that I can do. Sitting/standing too long is the only thing really. However, after the surgery I'll have a ton of limitations.

Still can't decise...

[Pooka1]

However, after the surgery I'll have a ton of limitations.

Again, please ask your surgeon. You may have almost no limitations like my daughters.

[LindaRacine]

I've put the effort towards not stressing about it but it's very difficult. I'm torn between waiting or just going for it. I would love to not worry about the physical appearance of my back and be able to actually go to the beach or sit in a chair without feeling out of place.

On the other hand, the surgery could potentially put me in pain for life or at least increase my chances of severe pain later in life. I'm at the point where my last surgeon put the decision in my hands. Sometimes I wish it was more severe so that I didn't have the option to wait for the surgery.

I am not limited in any way to the activities that I can do. Sitting/standing too long is the only thing really. However, after the surgery I'll have a ton of limitations.

Still can't decise...

It should definitely be a very difficult decision. We don't yet know your risk profile, in the long-term. And, we don't know that waiting is a good or bad thing. Since you don't have a crystal ball, you have to decide if the rewards of a straighter spine and potential improvement in pain outweigh the risk of the surgery causing you to be worse off in either the short- or long-term.

If I had had a crystal ball when I had my original surgery 20+ years ago, I think I might not have had that surgery. I don't really have pain, but I hate that I've lost so much flexibility. I didn't lose all that much flexibility from the first surgery, but that surgery led to needing more surgery that significantly reduced my flexibility.

Good for you taking your time to make the decision. There's no rush.

--Linda