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Cornerthree
12-14-2012, 04:58 PM
I feel this surgery should only be considered as a last resort; i.e., if you are truly hunched over and disabled from Scoliosis. If you absolutely have to do it, get yourself a good anesthesiologist to attend you with adequate pain medications while in hospital. If you have good pain management, you will be OK during your hospital stay.

I understand that for some people, surgery has to be performed and is the means toward a more normal life. This posting is intended for those with Scoliosis curves that go could either way - those that hang in the balance, so to speak.

Now here is what I have to say. If you will find it upsetting to read a painfully honest account of what it has been like for me (and also for others I know) to age with the surgery, please stop reading.

After suffering silently in pain and immobility from my scoliosis surgery for over 25 years, I am finally going to stand up and say what I really think about the surgery so that I can help others avoid what was my disabling and life-altering choice. My post might be unpopular, as speaking up against medical opinion always is, but it is only right that I speak honestly so that I can save other young people from making the choice I did. I hope others will respect my right to share what it is like for me to live and grow old with this surgery. I only wish someone had been honest with me about it when I was younger.

I was a normal, healthy 20 year old college student. I had been braced with a Milwaukee brace as a teenager but it didn't work, and so, before I aged-out of my parents medical insurance, I thought I would just "take care" of my scoliosis problem and have the surgery. My curve was about 60/40 degrees, getting a few degrees worse every year. Unfortunately, the people I had met that had had the surgery never told me what it would REALLY be like to live with a fused spine. They were afraid to speak honestly to me. And of course the surgeon was only too happy to perform the Harrington rod operation and get his huge fee. He told me what I understand spinal surgeons are still (sadly) saying today: "You'll be able to do everything you did before the surgery except for a somersault or a contact sport." What utter and dishonest nonsense!

The pain after the surgery was nothing close to the pain I had from the scoliosis. The surgeon also took bone from my hip instead of using a cadaver and that added to it. These days pain medications are better, so now this doesn't have to be a problem.

But the worst sensation was a few days later when I was transferred back to my room and realized I couldn't bend my spine. At all. I was horrified. No one had ever alluded to this. It felt like I was wearing my brace, but INSIDE my body. I could feel the metal, and it was a horrible feeling.

I never got used to it. For 25 years I have longed to arch my back, longed to stretch, long to hunch my back when I sit. The human spine is meant to bend; to fuse almost the entire thing is to permanently disable and alter someone. And muscles don't forget; mine want to stretch like they were meant to. Also, as you age your bones become stiffer; years of having a fused spine and having to compensate for the fusion take their toll on your hips.

I have been on opiate pain medication since my surgery; on that day, I was turned into a chronic pain patient. In an effort to relieve my pain and stiffness, I did have the hardware removed years ago, but although I'm glad I did it, it didn't give me any more flexibility.

I am the voice of (some) scoliosis patients who are aging with the surgery. I dare to speak out against this surgery and the surgeons who continue to perform this procedure, even in cases like mine that are not that bad. I hope to save others with moderate scoliosis from a choice that should be a last resort, hope to educate parents from not choosing this surgery for their children unless they absolutely have to.

Pooka1
12-14-2012, 05:40 PM
I feel this surgery should only be considered as a last resort; i.e., if you are truly hunched over and disabled from Scoliosis. If you absolutely have to do it, get yourself a good anesthesiologist to attend you with adequate pain medications while in hospital. If you have good pain management, you will be OK during your hospital stay.

I understand that for some people, surgery has to be performed and is the means toward a more normal life. This posting is intended for those with Scoliosis curves that go could either way - those that hang in the balance, so to speak.

Hi Cornerthree and welcome. Everyone's testimonial is valuable. Thanks so much for posting this. If there is anyone who disagrees that surgery is a last resort I haven't met them or even heard them say anything opposite that. It would be irrational to hold that surgery is NOT a last resort. If nobody else, the cost of it guarantees that the insurance companies would not be paying for it if it wasn't a last resort. You are pushing on an open door here. :-)


Now here is what I have to say. If you will find it upsetting to read a painfully honest account of what it has been like for me (and also for others I know) to age with the surgery, please stop reading.

Sorry I am not following. Why would anyone object to your being honest? Just like people should not believe in fairy stories just because they make them feel good, equally people should not avoid reality even if upsetting. Please feel you can post any first hand experience you have. It will be a service to the community here.


After suffering silently in pain and immobility from my scoliosis surgery for over 25 years, I am finally going to stand up and say what I really think about the surgery so that I can help others avoid what was my disabling and life-altering choice. My post might be unpopular, as speaking up against medical opinion always is, but it is only right that I speak honestly so that I can save other young people from making the choice I did. I hope others will respect my right to share what it is like for me to live and grow old with this surgery. I only wish someone had been honest with me about it when I was younger.

Are you saying some surgeon lied to you? How would you sort that out form what you happen to remember in a very stressful time of your life?


I was a normal, healthy 20 year old college student. I had been braced with a Milwaukee brace as a teenager but it didn't work, and so, before I aged-out of my parents medical insurance, I thought I would just "take care" of my scoliosis problem and have the surgery. My curve was about 60/40 degrees, getting a few degrees worse every year.

That falls within the indications for surgery as far as I know. Are you saying it doesn't?


Unfortunately, the people I had met that had had the surgery never told me what it would REALLY be like to live with a fused spine. They were afraid to speak honestly to me.

Are you saying everyone you know who had this surgery had a bad outcome and conspired to hide that from you? Didn't even a single person have a good outcome? Did you know that most people have a good outcome because most have a thoracic curve that is amenable to treatment both with the old Harrington rods and the newer instrumentation?


And of course the surgeon was only too happy to perform the Harrington rod operation and get his huge fee. He told me what I understand spinal surgeons are still (sadly) saying today: "You'll be able to do everything you did before the surgery except for a somersault or a contact sport." What utter and dishonest nonsense!

Both my daughters are fused. They have their normal life back. That is honest FACT. Do you suspect I am lying? And they are not alone. Of course surgeons take patients as they come and I wonder if you considered that the bad outcomes are due to patient co-morbidity as opposed to surgical error. That's what that data look like as far as I know. Did you have other problems?


The pain after the surgery was nothing close to the pain I had from the scoliosis. The surgeon also took bone from my hip instead of using a cadaver and that added to it. These days pain medications are better, so now this doesn't have to be a problem.

I'm sorry for your pain. Now taking bone from the iliac crest is not a good idea for kids or young folks in my opinion. I was prepared to refuse it if the surgeon suggested it. There are known issues of long-term pain that is often far worse than any back pain after surgery over the years. So back pain is solved but hip pain starts. I am very sorry that happened to you.


But the worst sensation was a few days later when I was transferred back to my room and realized I couldn't bend my spine. At all. I was horrified. No one had ever alluded to this. It felt like I was wearing my brace, but INSIDE my body. I could feel the metal, and it was a horrible feeling.

I'm sorry. I am sure that was horrible. But you can't compare that to normal because normal is off the table. My daughters will never see normal whether they had the surgery or not. It's a game of cutting losses. You have to compare how you are to how bad you would be if you didn't have the surgery. Also, have you considered a revision with newer instrumentation? That might solve all your problems with the H rod. Of course I have no idea because I am not a surgeon but I know people are helped when they have H-rods revised.


I never got used to it. For 25 years I have longed to arch my back, longed to stretch, long to hunch my back when I sit. The human spine is meant to bend; to fuse almost the entire thing is to permanently disable and alter someone. And muscles don't forget; mine want to stretch like they were meant to. Also, as you age your bones become stiffer; years of having a fused spine and having to compensate for the fusion take their toll on your hips.

I see that point. I am sorry you are dealing with that. But again, might you be worse without the surgery? At least one of my daughters would be dead without surgery... curve moved 5* a month for the entire observation period.


I have been on opiate pain medication since my surgery; on that day, I was turned into a chronic pain patient. In an effort to relieve my pain and stiffness, I did have the hardware removed years ago, but although I'm glad I did it, it didn't give me any more flexibility.

Have you investigated revision surgery?


I am the voice of (some) scoliosis patients who are aging with the surgery. I dare to speak out against this surgery and the surgeons who continue to perform this procedure, even in cases like mine that are not that bad. I hope to save others with moderate scoliosis from a choice that should be a last resort, hope to educate parents from not choosing this surgery for their children unless they absolutely have to.

Rest assured no parent chooses surgery unless they absolutely have to do so. Please take that load off your mind. Some H rod patients certainly have trouble but that is not really relevant to parents today making the surgical decision with the new segmental instrumentation, especially for thoracic curves. Now other curve types are still problematic and surgery is dicier in those cases as far as I know. Those are not clear calls like large thoracic curves are.

Thanks for posting and I hope you continue to post. All testimonials are important.

jrnyc
12-14-2012, 06:04 PM
hi corner
personally, i think you have a right to share your experience
with scoliosis surgery on a forum devoted to scoliosis...
i am so sorry for what you went thru...
unfortunately, i am not surprised that doctors were not honest with
you....in medicine overall, i think that was far too common with many
doctors in many different specialties...though i do believe it is getting
better as the years pass....

i am so sorry for all the years you have lived in pain...
i do believe that people have surgery as an absolute last resort...
anyone who gives it any thought will only turn to surgery (for
any medical problem) when all else fails....

jess

Lorz
12-14-2012, 06:41 PM
Thank you for your post. I can empathize with everything you feel, as I feel the same way. Although I am only 18 months post op, I have regretted having this surgery for almost every day of those 18 months. I consider myself very fortunate to have lived over half of my life with an unfused spine. I agree that the doctors fail to tell us the reality of what we will feel like, and that many of the people on this forum only discuss the positive outcomes, and not the negative. I have asked myself many times why I am in the minority? Why do I feel the hardware, and also feel like I am wearing an internal straight jacket, when everyone else says how wonderful they feel? I think there are more people like us who are less than thrilled with their surgery. They just are not posting. I correspond with 3 other forum members who continue to have issues. You are not alone.
I agree that this surgery should be a last resort. Compromised cardiac and lung function are certainly indicators that surgery is not optional. But, if that is not the case, it is some times easier to deal with the known vs. the unknown. Although I had pain pre-op, it was familiar, and I knew how to deal with it. My body now, feels like an alien to me, and I don't know how to adapt. My muscles are unable to adapt, and are so tight, I feel like I am being squeezed in half. I am waiting to hit my 2 year mark, to possibly have the hardware removed.
You say you had your hardware removed. I know the flexibility will never return, but did you at least stop "feeling" the hardware? Did your muscles ever stop feeling like they needed to stretch? I hope you were able to get a little relief. I am sorry you have lived for so many years feeling this way. Again, thank you for sharing your story. It is important to present all points of view.

rajma
12-14-2012, 08:19 PM
Hi,
I think very few of us would have undertaken this surgery of this magnitude as a first resort. Loss of flexibility is a given if we are essentially making the vertebrae immobile through fusion. The amount of flexibility loss varies based on the levels fused.
Disk degenration for the remaining disks is also expected because they are compensating for the fused disks. The question is how long do they last and is there anything that we can do to preserve the remaining disks for as long as possible.
I am 4 months post op and I went into this surgery with my eyes wide open. My pain was getting bad and my quality of life had become bad enough that I was willing to consider the surgery with the hope that it wold improve post surgery. So far things are moving in the right direction.
None of us chose to have this disease and we just make the best of our situation given the medical facts.
I for one am glad to see stories of success (relative) and gives me hope that I can lead a reasonably good number of years without incapacitating pain and drug dependence.
I am perfectly willing to lose some flexibility and put up with numbness and itching and muscle pulling for it.

Pooka1
12-14-2012, 08:23 PM
I am not often perplexed but I am perplexed that anyone could think surgery should not be the last resort. I seriously doubt anyone thinks that. Maybe I need to get out more.

susancook
12-14-2012, 09:20 PM
Thanks for your honesty. I am considering having surgery, my situation and age are different that yours. My heart goes out to you as it sounds like you have suffered for so long. Like others, I would recommend that you see a VERY GOOD SRS revision surgeon for another opinion.

You said that your curves...I think were 60/40 at 20 and changing 3 degrees a year? And that was 20 something years ago. So, right now, if you didn't have the surgery, you would probably be collapsed physically in a wheelchair with pain meds also. I'm not minimizing your pain and disability, please do not think that.

I have also dealt with anger and depression in counseling and I hope that you are doing that or considering it.

I wish you the best of luck in dealing with your back. Life has dealt you a bad hand, but somehow, I think that there has to be some revision surgeon [Linda would know where in your area], that could help you.

I'll be thinking of you. Susan

Confusedmom
12-14-2012, 11:57 PM
Hi Cornerthree,

I totally get what you are saying, and I want to reinforce it. I am not in excruciating pain and I think most people would view my surgery as successful. Yet, I still question it. Part of that is my personality, I know. But in my case I was not in pain to any great degree before surgery, so life after surgery is just more painful. It just is. I was told by one surgeon I would recover in about three months. Ha. I was not even off pain meds then. Another one told me I wouldn't be that effected by the loss of flexibility because my spine was already so stiff. That's ridiculous.

I have told other forum members that I feel like I am voluntarily and permanently disabled. And that's with a good outcome!

I was pretty much as informed as you can get going into this. But I made the decision because doctors kept telling me to do it while I was younger. I would tend to disagree with that now. I would say hold out as long as you possibly can. That way you'll have fewer years to live with the fusion -- and more years to live with a flexible spine.

Of course, I do agree with what everyone is saying about we have to consider what we would be like without the surgery. I had an 80 degree curve at age 40, progressing 2-3 degrees a year. So my pain-free days were numbered, for sure. I often wonder if I would be happier with the outcome if I had waited until I was in excruciating pain to have the surgery. I have to think so.

That said, it is what it is and I have to live with it. So, I try to focus on the positives--like my awesome posture, nice waistline (at least in the back), and likelihood I will never be hunched over as I age. Also, I do have the surgery behind me, so there is not that fear of the unknown hanging over my head. I would like to think that I am a stronger, more compassionate person for having gone through this, as well. For instance, I no longer avert my eyes when I see someone in a wheelchair at the grocery store. I ask if I can reach something for them. I know there are many times when I need someone to reach something low for me.

Thank you for posting. I would have wanted to read this before my surgery.

Evelyn

rajma
12-15-2012, 07:35 AM
Hi Evelyn,
Everyone's experience and expectations are different, but I think picking the time for surgery is also a trade-off. After a certain age, it would be hard to get a good correction because of our bones becoming stiff.
I also believe beyond a certain curvature, the number of surgeons having the courage to operate would also go down. After all surgeons are also human.
That being said, I respect your opinion that you would have waited longer, it is a very personal decision and very hard to generalize.

Pooka1
12-15-2012, 08:34 AM
I hope that surgeons, when advising folks about the advantages and disadvantages of doing surgery sooner rather than later address the issue of length of fusion and if it likely will change upon waiting. There are at least two surgeons who have talked about this and so I am guessing there are many more. If you scan the fusion lengths of younger people versus older people, there is an alarming trend of older people needed longer fusions ON AVERAGE. If generally true of the whole population that should make no sense whatsoever UNLESS waiting structuralizes formerly compensatory curves. If/when this happens, the stakes could not be higher than in the lumbar. Most AIS curves (which are most curves full stop within IS) are thorasic. Yet we see so many older patients with fusions involving their lumbar. Before the present instrumentation was available, it may have made sense to wait to fuse a T curve but given the possibility of losing the lumbar when it could have been avoided, it doesn't seem to make sense now.

In the extreme, we have that case on Dr. Hey's blog where a woman had a structural T curve (30*) and a compensatory L curve (18*) at maturity and the L curve collapsed while the T curve remained at 30*. Presumably, she will lose her lumbar and furthermore she was destined to do so because no surgeon could ethically fuse a 30*. Better data is sorely needed to determine what the surgery threshold should actually be on T curves so as to avoid lumbar involvement later in life.

In Cornerthree's case, maybe one silver lining is that his lumbar was saved which he might view as extremely important given his comments about lack of flexibility through the thorax. Had he not had the surgery, he might have needed fusion to pelvis by now, who knows. I'm just saying the testimonials seem to present that as a distinct possibility though every case is different. Hopefully he can get a revision or at least some help from a pain specialist. People should not be left in pain like that. Life is so unfair.

Pooka1
12-15-2012, 08:57 AM
but a site like this really should be about listening and support, not about reading stuff into things and inappropriate, if well-meant, responses.

I'm sorry you didn't like some responses you received. The other forum where you posted these sentiments is probably better suited to your needs. That seems like more straight support even if it requires occasional subordination of factual material to maintain the supportive tone. There is somewhat less policing of counterfactual material on the other forum although they have some very knowledgeable people who are capable. Also, in keeping with the more factual stance, we have a research section here although unfortunately it is usually choked with folk science and pseudoscience as would be expected with a predominantly lay membership. Patients would be advised to avoid that section in my opinion... the blind leading the blind leading the naked. This forum supports also but does not subordinate the factual material. Folks looking only for support are better off on the other forum in my opinion.

Good luck.

LindaRacine
12-15-2012, 11:39 AM
Sorry, I meant no disrespect. I will erase my post in the event that you are concerned for your privacy.

Confusedmom
12-15-2012, 02:09 PM
Cornerthree,

I just want to mention that after reading Linda's posts for literally years, I really think she was trying to be helpful. She may have made some assumptions that turned out to be untrue. But given her vast experience, so probably associated some of your issues with those commonly experienced by other people. If you keep reading her posts, you will see that she is a straight-shooter who usually is very helpful to most.

I hope that you will continue to post. I think what you have to say is very valuable, and we could use your perspective here.

Best,
Evelyn

jackieg412
12-15-2012, 02:28 PM
HI cornerthree,
I for one am happy that you have brought up this discussion. All of us are working through this the best that we can. Some get along easier then others,but you have addressed an issue that is complex. I AM HAPPY THAT YOU DID!

Pooka1
12-15-2012, 02:33 PM
Cornerthree,

I just want to mention that after reading Linda's posts for literally years, I really think she was trying to be helpful. She may have made some assumptions that turned out to be untrue. But given her vast experience, so probably associated some of your issues with those commonly experienced by other people. If you keep reading her posts, you will see that she is a straight-shooter who usually is very helpful to most.

I hope that you will continue to post. I think what you have to say is very valuable, and we could use your perspective here.

Best,
Evelyn

I agree with these comments about our moderator. She not only has personal experience with scoliosis but works in this field. She is the person I most defer to here because I recognize her wealth of knowledge on the ground in spine research. People who want the straight dope love her. People who want something else may or may not like her. People pushing counterfactual material almost certainly will not like her (not talking about Cornerthree here... definitely talking about certain others though). People have many different reasons for accessing fora like this and we can't always assume everyone wants the facts. For example, there are several counterfactual statements on the OP's thread on the other forum that will stand. That makes my skin crawl for patients.

Again with NO reference to Cornerthree, we see the phenomenon that "He who tells the truth is driven out of nine villages." People do NOT necessarily want facts and I have had to learn that lesson myself. I still find it jaw-dropping, though.

susancook
12-15-2012, 02:54 PM
Sorry if I misread your post. So if you're not angry and depressed then obviously a:o therapist isn't appropriate. I had read lots of posts and obviously confused you with the post that was in front of this one.

I hope that you don't stop posting as you represent a person that has a valuable message to share. You represent my biggest nightmares and are what I fear might happen.

I hope that you are having a good day today. I will miss your perspective if you do not come back. Susan

Pooka1
12-15-2012, 03:08 PM
Sorry if I misread your post. So if you're not angry and depressed then obviously a:o therapist isn't appropriate. I had read lots of posts and obviously confused you with the post that was in front of this one.

I hope that you don't stop posting as you represent a person that has a valuable message to share. You represent my biggest nightmares and are what I fear might happen.

I hope that you are having a good day today. I will miss your perspective if you do not come back. Susan

Susan,

If he leaves, you can continue to enjoy his perspective on SSo... here are his posts...

http://www.scoliosis-support.org/search.php?searchid=1093246

I hope he stays here though because every testimonial is valuable. I wish we had far more posted.

titaniumed
12-15-2012, 04:36 PM
Cornerthree,

I’m a little late here.....the story of my life.

I am so sorry this happened and your posts are appreciated here.

You have to realize that many things have changed in the scoliosis world in the past decades. I had twin 50’s in 1974 and elected to wait due to skiing. I was also fortunate that I didn’t progress at a fast rate and it bought me time. I knew I would have surgery at some point back in 1974. I also dodged the Harrington rod era which was a good thing....it was what they had at the time.....things are truly better now, technology is advancing.

I think the best way to know what a full fusion is like is to wear a full brace. I had a full brace made by Copes for skiing. This was my main reasoning for this brace, and it served its purpose at that time. Maybe it should be mandatory to wear a full brace so patients will know exactly what it feels like. Wear it for a month or two so there are no surprises....It doesn’t have to correct any curves, it would serve as a prep tool, understanding what fusion is about. I knew what I was getting into, of course I didn’t have any choice in the matter. My pain was beyond belief right before my surgeries.

Internet communication is so difficult....but having this forum is a good thing. It was something I could have used through the years. (pre-internet) The best way for a prospective surgical candidate to make decisions is to read here and attend local scoliosis meetings!!!!! For those readers that are in this position, please DO THIS. There is nothing like meeting people and talking these things over. It’s a surgeon, patient, information exchange that shouldn’t leave any doubt. If there is any doubt, keep going to meetings until all questions are answered. My surgeon wanted me online and attending meetings before surgery.

I didn’t read all the posts here, but I also have been reading Linda’s posts for many years, even before registering here, know her, and totally respect her work. When it comes to our problems, there are no stones that should be left unturned, all aspects of the disease including our depression status should be addressed, God knows how many times I have screamed at the sky. I do try to talk about feelings, any missed subjects, its not an easy thing to do....and this is a public forum. I think its something that needs to be addressed, all the internal problems I or we have tackled living with scoliosis through the years.

So, back to your statement about surgery being a last resort. I have to agree and disagree. Yes, scoliosis surgery is invasive, yes, there are complications, and yes pain control is not a guarantee. It kills me reading about those that are hurting and makes me feel so bad since I came out so well. Complications need to be addressed and understood. There are a whole host of things that can go wrong, But,but,but, there are many who do come out well. I being one of them. Now, on the flip side, my surgeon wanted to know why I waited so long? My spine was rotting away from degeneration, and my surgeries became extremely serious. I cant say I lost lower levels but the magnitude of waiting, involves things involving degeneration issues, lung issues, nerves becoming encapsulated by bone and bone spurs.....etc etc. So, now you can see why I can disagree but understand why you feel the way you do.

I truly hope that you can come to a resolution, possibly trust a good revision surgeon and possibly get yourself fixed. What choice to we have? I knew from the start and was guaranteed 100% that something would go wrong with my surgeries. It’s the risk we have to take, and we have to be extremely brave souls to do this.....If my trust lacked with my surgeon, I wouldn’t be making these posts today.

Scoliosis surgery can be a tough route. I tackled my recovery without looking back, and having a positive attitude, a mental acceptance of change that overrode all thoughts.

Please keep us informed as we do care.

Ed

JenniferG
12-15-2012, 05:10 PM
It seems the surgery cornerthree is speaking of is no longer performed. If I was facing a life of pain and disability due to scoliosis, I would concentrate on reading patients' stories who've experienced spinal surgery with modern instrumentation. I don't think the two can be reasonably compared.

susancook
12-15-2012, 05:23 PM
Susan,

If he leaves, you can continue to enjoy his perspective on SSo... here are his posts...

http://www.scoliosis-support.org/search.php?searchid=1093246

I hope he stays here though because every testimonial is valuable. I wish we had far more posted.

Thanks for Scoliosis support forum. I did not know it existed.
Susan

titaniumed
12-15-2012, 06:39 PM
It seems the surgery cornerthree is speaking of is no longer performed. If I was facing a life of pain and disability due to scoliosis, I would concentrate on reading patients' stories who've experienced spinal surgery with modern instrumentation. I don't think the two can be reasonably compared.

I totally agree.

As Pam would say a few years ago, if anyone even suggested using a Harrington Rod, they should run....and run fast. So true..

No individual vertebral anchoring which means no rotational correction unless used with wires (and that was limited through the lamina which is centered) No individual coronal correction, relying on extending over 2 hooks over many levels with no control of levels between the hooks.

No decompression or sagittal angular adjustment. No lordotic or kyphotic curve rebuild. Flat back issues.
Large painful hardware. Hooks, no pedicle screws. Not a low profile system.
Compression rods pulling down on discs.??? Sounds hard to believe.
Generally a posterior only surgery, no ALIF or TLIF or XLIF for balanced fusion.

What else am I missing? material science....removal process of impurities has improved in the last 20 years. Impurities could affect corrosion rates....

It was a 50’s invention to help extreme scoli's from curving into knots......

A thing of the past....there is no comparison to the way its done today. Its like comparing a model T ford with a McLaren F1.
http://en.wikipedia.org/wiki/Model_T
http://en.wikipedia.org/wiki/McLaren_F1

Technology has advanced.

Jen, If you could, ask for the drawbacks of the Harrington rod compared to modern scoliosis surgery hardware systems on the Australia forum, there is a surgeon that posts there. Would love to read the comments.

Ed

JenniferG
12-15-2012, 08:23 PM
Jen, If you could, ask for the drawbacks of the Harrington rod compared to modern scoliosis surgery hardware systems on the Australia forum, there is a surgeon that posts there. Would love to read the comments.

I've asked the question Ed. I also asked him if he has any personal experience with Harrington rods. Sometimes it's weeks before an answer shows up, but I'll keep an eye on it and let you know.

Confusedmom
12-15-2012, 08:46 PM
Yes, Cornerthree is talking about Harrngton rod surgery. But his/her? comments about the results of fusion are still relevant. The spine fuses with today's instrumentation, too. It seems like Corner's chief complaints: loss of flexibility, inability to use back muscles appropriately, stress on hips, etc. all are pertinent to today's techniques, as well. I'm just pointing this out because I think it's exactly right that you can't really know what it's like to have a fused spine until it's done. I don't want people to dismiss Corner's comments because it is an outdated surgery. Someday pedicle screws will be outdated, too. Just sayin.

Pooka1
12-15-2012, 09:33 PM
It has been noted that this link doesn't work for some reason. He posts as "Tableone" on SSo. Here is the same thread starter... let's see if it posts correctly...

http://www.scoliosis-support.org/showthread.php?p=249385#post249385



Susan,

If he leaves, you can continue to enjoy his perspective on SSo... here are his posts...

http://www.scoliosis-support.org/search.php?searchid=1093246

I hope he stays here though because every testimonial is valuable. I wish we had far more posted.

Pooka1
12-15-2012, 09:34 PM
It has been noted that this link doesn't work for some reason. He posts as "Tableone" on SSo. Here is the same thread starter... let's see if it posts correctly...

http://www.scoliosis-support.org/showthread.php?p=249385#post249385

Okay that works for me.

mariaf
12-15-2012, 11:40 PM
I agree that the doctors fail to tell us the reality of what we will feel like, and that many of the people on this forum only discuss the positive outcomes, and not the negative. I have asked myself many times why I am in the minority? Why do I feel the hardware, and also feel like I am wearing an internal straight jacket, when everyone else says how wonderful they feel? I think there are more people like us who are less than thrilled with their surgery. They just are not posting.

First of all let me say that my heart goes out to you, and to the original poster and to anyone else who is suffering post-surgery.

Ironically, I always thought the opposite - that people who post on these sites were the ones in need of support and that those with good outcomes (whether from surgery or otherwise) were off living life and not thinking about scoliosis. Of couse, I could be wrong :-)

I also agree with what you and others have said that fusion surgery should, of course, be an absolute last resort.

Best of luck to you.

scooter950
12-16-2012, 09:32 PM
Hello, well I am a lurker, still planning to have surgery - and I truly appreciate reading your honest words, and I can relate to what you described! I feel what you describe NOW, with my twisted body. My Left back is always feeling like it needs a good stretch- which is impossible with my curve. I get what I describe as charley horse aches in that side- and I can't do a thing to relieve the pain. It' s not really "pain" in the traditional sense either- it's the tight muscles, and the right side of my back is always stretched and I try to twist and extend my spine and try to get relief all the time. Now, I've thought about being totally stiff post-op; I do get lazy and slouch in bed, and I think " i will never be able to do this post-op" and maybe slouching is bad for the spine. But - I am making an educated guess. Perhaps- if I do nothing- perhaps my spine will stabilize and I will live with pain and achey muscles. But what if I get degenerative changes? ( already have some) what if I get osteoporosis and lose vertebral height? then I will have to face surgery at a greater risk for post-op complications. I'm so sorry you have such pain, so sorry you feel so trapped by your spine. PLease continue to post, you bring a sense of balance to the forum, and it helps to hear and learn from everyone's experience. God bless you, Jamie in TX

PS- need to change my signature now older, and surgery postponed due to a new job with probation period

TAMZTOM
12-18-2012, 03:31 PM
Amicable discussion on an important issue, thanks to the OP for sharing. I responded to his post on the UK forum and wow, the fat hit the pan! :-)

"Surgery as a last resort." In the USA and the UK, many kids with curves around 40°, some only 10 yrs, are put on surgical lists. Many are braced--a surgical adjunct--until their number is called. Almost invariably, a 40° 10 yr old sausaged into a brace worsens rapidly out of the brace. Surgery, in the UK and USA, is the ONLY RESORT of which people are made aware.

I read in this forum of many people who lead active lives until their 50s and 60s, then accept surgery. I haven't read a single account of anyone wishing they'd done it earlier.

As for other alternatives/resorts, these are poorly researched, delivered mainly by non-invasive sharks (maybe termites is a better description) and given bad press by 'the surgeon' who, almost by definition, hasn't a clue about their efficacy.

Nb: the OP doesn't give me the impression of someone looking for emotional support. I read his post as commendably inspired to support others grappling with life-changing decisions.

Another poster made a salient point about spine FUSION remaining notwithstanding new, EXPERIMENTAL instrumentation.

My own interest in this discussion is to ensure that I make eyes-open decisions about my daughter's life. If she was at 50 degrees, after having read what I've read about fusion, I would not sign her up for surgery.

Pooka1
12-18-2012, 04:34 PM
I think if everyone posted before and after radiographs for ALL treatments... surgical, conservative and alternative, we would cut to the chase very quickly. Intent to treat is the only indicator and it would be VERY important to sort out the various forms of scoliosis and the age of the patient. There is no global statement that will cover every patient.

For example, it is known that Marfan's scoliosis is not amenable to brace treatment and that JIS is much more amenable to bracing than is AIS. Also, not all fusions are equal. Fusion of T curves has been shown to stabilize the spine including the L curve for at least two decades (the length of hte study) with minimal impact in remaining discs for all patients (small study though). Other fusions, those that are largely in the lumbar or that extend below about L3 are known to be problematic. The OP had an H-rod to L3 or L4. Those patients often need revision as I understand this... even pedicle screw constructs are not a stable, long-term solution necessarily when they extend that far in to the lumbar. It's all just biology and physics. Also, I think people are losing their lumbar due to waiting too long to fuse the thorax. I would not want that on my head if it were my child. These are tough decisions and we can only do the best we can. It is impossible to assess this without careful denotation of what is what because "scoliosis" is a word that denotes many different and varied cases.

Before and after radiographs, while abundant in the surgical sections, tend to be conspicuous by their absence in the bracing/PT threads. Martha Hawes has done this and did improve her curve but it seems like that resulted from the change in her chest cavity shape. She was not trying to decrease her curve but was only trying to avoid respiratory symptoms. I think she was blind-sided by the curve decrease. Anyway, that was JIS so all the AIS cases might be disappointed if they don't follow suit. Another case is the guy who did post his before/after PT radiographs, it was obvious he just decreased the compensatory lumber through exercise and/or postural change. The structural T curve was not affected and may have gotten a bit worse. The only way bracing and PT can gain a foothold is with evidence of efficacy which is hard to come by when even large curves stop progressing on their own as seen by a few cases on this group.

Normal is off the table. It's a game of cutting loses in my opinion. People who don't have rabid curves have time to try different things. Some kids don't have that luxury.

Irina
12-18-2012, 05:09 PM
I read in this forum of many people who lead active lives until their 50s and 60s, then accept surgery. I haven't read a single account of anyone wishing they'd done it earlier.



People who wait until their 50s and 60s are often adult generative offset scoliosis OR people who didn't have an option of having this surgery in their teen years (me being one of the second group). The surgery was never offered to me in the country of my birth because they just didn't do it there. Then, when I immigrated to the US, I never had time for it and it was not too bad. Things went downhill after I turned 40. I don't regret not having it done earlier, but if I were born here, I would definetely have this surgery done in my teen years.

TAMZTOM
12-18-2012, 05:33 PM
I think if everyone posted before and after radiographs for ALL treatments... surgical, conservative and alternative, we would cut to the chase very quickly.
Ehm, that would establish that...ehm...rods are straight. It avoids the issues of them breaking, screws popping, discs degenerating, pain and other secondary problems of surgery, quality of life...etc.


There is no global statement that will cover every patient.
Exactly. The OP exposes the widespread practice by surgeons of advising, "Surgery or nothing."


...JIS is much more amenable to bracing than is AIS.
That too is misleading and sweeping. JIS/AIS is a tenuous distinction to start. Min Mehta had great success with REALLY young kids in casts. I have heard from dozens of parents of JIS kids, braced after 10 yrs old, who progressed in brace. Dozens of kids damaged by braces before 10 yrs old. It is not only surgery that needs more scrutiny.


Fusion of T curves has been shown to stabilize the spine including the L curve for at least two decades (the length of hte study) with minimal impact in remaining discs for all patients (small study though).
Has been shown for some. For every "some", there are some others who were NOT stabilised. And what happens to the "some" after 20 yrs? We know what happened with the Harrington generation. We don't KNOW what will happen to this generation. Surgery is experimental.
"Minimal impact in remaining discs"...as you say, small study, and "minimal" might be enough to cause major pain and worse.
I'm not picking nits, but you keep making sweeping statements that are not accurate.


Other fusions, those that are largely in the lumbar or that extend below about L3 are known to be problematic.
Now that is useful information for people contemplating this type of surgery. The OP wants this type of honesty from surgeons.


Those patients often need revision as I understand this... even pedicle screw constructs are not a stable, long-term solution necessarily when they extend that far in to the lumbar.
That again is invaluable information for people contemplating surgery...and I make NO suggestions about whether choosing surgery is the best option for many people. I would imagine that for many it absolutely is the best option.


Before and after radiographs, while abundant in the surgical sections, tend to be conspicuous by their absence in the bracing/PT threads.
I could take Tamzin for an x-ray this week. That x-ray WOULD show 5 degrees lumbar, <15 degrees thoracic. I could take her for another next week and it'd show 15 lumbar, 25 thoracic. I could possibly bribe her to stand in a posture that would exacerbate her curves and show 35 degrees. I could also have me x-rayed with a completely straight spine, then a curved one. The radiographer would say I had scoliosis; so would the surgeon. I don't have scoliosis. This type of confusion about what an x-ray reliably shows needs exposed.
And furthermore, perhaps the dangerous practice of multiple x-rays by those who post them in the surgical sections is indicative of the utterly pointless proliferation of x-rays in this "watch and wait till the curves progress" culture.


Martha Hawes has done this and did improve her curve but it seems like that resulted from the change in her chest cavity shape. She was not trying to decrease her curve but was only trying to avoid respiratory symptoms.
She WAS trying to decrease her curves, but that is a pointless debate. The salutary FACT is that she reduced her curves, and they were whoppers! All those who would decry the corrective benefits of corrective breathing take note! Breathing correctively can correct scoliosis! You heard it here first! :-)


Another case is the guy who did post his before/after PT radiographs, it was obvious he just decreased the compensatory lumber through exercise and/or postural change. The structural T curve was not affected and may have gotten a bit worse.
I think you refer to the guy who posted on here some months back, did a lot of stretching stuff? No one is going to base anything for or against anything on that. Why bother mentioning it? It's a bit like clutching at straws?


The only way bracing and PT can gain a foothold is with evidence of efficacy which is hard to come by when even large curves stop progressing on their own as seen by a few cases on this group.
Bracing is losing the strangle-hold it has exerted for donkeys years. Non-invasive exercise based treatments are entirely distinct from bracing. Bracing is tied to surgery--and doesn't stop the surgeries.


It's a game of cutting loses in my opinion. People who don't have rabid curves have time to try different things. Some kids don't have that luxury.
I agree, some kids don't have the opportunity to even try non-invasive correction. The OP opened the discussion for those who do have that opportunity...and this is an important discussion.

Pooka1
12-18-2012, 06:06 PM
Hey Tom, I'm going to agree to disagree on some of those points and stand on the record.

There are two issues:

1. do any conservative treatments work to prevent surgery for life?

and

2. if they don't is the patient better off with or without surgery?

The jury is out on #1 and only a patient talking to other patients and consulting with one or more surgeons can answer #2. While there is plenty to lament about surgery, I think people tend to compare it to normal which of course is not the relevant comparison. They need to be comparing it to not having surgery and in the fact of potentially worsening symptoms and even disastrous results like losing a lumbar that could have been saved had the patient not dilly-dallied trying various conservative modalities. For my daughters, one almost for sure and the other maybe would be dead without surgery.

As far as I can tell, there are two sets of patients and two sets of parents. The ONLY thing that separates the two sets is whether they or their kids need surgery or not because there is no proven conservative method. There is no doubt in my mind that if the kids who had surgery had the parents of those now pushing conservative methods, virtually all of them would have had surgery. This is about facing facts and accepting reality for certain classes of cases (mainly AIS with large, progressive T curves and many Marfan's patients). There are a few exceptions but taking my one daughter's case where her curve moved 5* a month for the entire observation period of about 6 months, it's not like we had a choice. Many kids don't have a choice. They are just out of luck like that woman with the collapsed L curve under a subsurgical T curve. Life is unfair.

Elisa
12-18-2012, 06:38 PM
Hi all, haven't checked in for quite a while, hope everyone is doing okay. Good to see the forum is still as active and interesting as it was the day I joined two years ago. Just wanted to make a couple of points on this thread.. of course surgery is ALWAYS a last resort.. especially when you live in British Columbia, Canada like I do b/c the wait lists are so damn long.. your spine will collapse waiting for an appointment!!

Medicine, like everything else in this world evolves with experience and knowledge. Comparing surgical procedures that were cutting edge 25 or more years ago is like comparing the evolution of monstrous computers to today's super sleek laptops.. no comparison at all so I'm not sure why people are even making this comparison in the first place.

My son had a wicked curve 110-115 degrees before he had his surgery/traction for a month/2nd surgery for spinal fusion about 18 months ago. He is doing extremely well. Yes I am concerned about things going wrong with his rods, and worry that wear and tear will put strain on his remaining un-fused discs but we had no choice but to go ahead with treatment b/c his spine was collapsing and he was in daily pain and his quality of life was diminishing rapidly.

He is very careful about not participating in anything that will do damage to his compromised spine, but if for some reason he breaks a rod, a screw become dislodged or he needs revision surgery in the future then so be it. If he has the most up to date surgical implants now, which are FAR superior than they were 25 years ago, just think how much more advanced they will be 25 years or less from now.

Comparing someone's scoliosis experience from 25 years ago to today, is like comparing apples to oranges.. no comparison whatsoever.

TAMZTOM
12-18-2012, 06:52 PM
Hey Tom, I'm going to agree to disagree on some of those points and stand on the record.
Not only do I have no problem with that, Sharon, but I believe well intentioned and rational disagreement is productive, as I've always said to you. All else is idle nonsense. You know where I'm coming from. As I've also said often, it would be refreshing if many, many more would join such discussions. I have learned REAMS more from people who have had surgery than from those doing non-invasive stuff. We're getting a different side of the surgical perspective now, more grist for the mill. I am not in and will not be shoved into 'any camp' and want to learn from everyone.


The jury is out on #1...
In our case, we've taken a kid from 40 down to 25 (she's really less, but I'm high-balling it). Will that last for life? According to the scientific research and most of the noises from surgeons--including our own staggered surgeon--yes, it will. She's below the often quoted 30 degree threshold. That means little to me. I consider that she's not safe from progression despite her correction. I want her below 20 degree thoracic before I will even BEGIN to consider that she's safe from progression. (If we do this quickly, say before she's 12 or 13, she'll have remaining growth--a lot--and, according to the research suggesting 60% spontaneous correction of kids with growth remaining, will improve more. There will be nothing spontaneous about any further correction--Tamzin will exercise to correct regardless.



They need to be comparing it to not having surgery and in the fact of potentially worsening symptoms and even disastrous results like losing a lumbar that could have been saved had the patient not dilly-dallied trying various conservative modalities. For my daughters, one almost for sure and the other maybe would be dead without surgery.
You therefore had no choice but surgery. Plain and simple (but still not easy, emotionally).
Patients don't "dilly-dally" trying various conservative treatments. I've met parents and kids who have literally travelled globally, worked their goddamn asses off, trying to correct, and not succeeded. One in particular is now researching the various surgical alternatives. Gut wrenching for the family who really did try. But they were sucked in and mal-treated by the dispensers of some treatments. ALL treatments can improve, surgery and non-invasive methods. I hope they ALL do improve.


there is no proven conservative method.
There is no proven surgical method of acceptable treatment FOR LIFE. The jury is still out and will be out for the next 40 years on what the surgeons are trying now. Both camps are in the same boat and should up their game.


There is no doubt in my mind that if the kids who had surgery had the parents of those now pushing conservative methods, virtually all of them would have had surgery.
There is no doubt in my mind that if loads of those kids who had surgery had done what we and others are doing, they would not have had surgery until, at the earliest, they were in their 60s (age that is, not degrees of curve). Neither your opinion nor mine mean squat really. :-(


Many kids don't have a choice. They are just out of luck. Life is unfair.
I know and that sucks. It hits me in the gut. It has taken having a daughter mightily out of goddamn (carefully chosen expression) luck for me to really contemplate what all the parents with kids with this condition go through. I would kick many arses in all fields to get them justifying their pay grades...makes me angry....

tae_tap
12-18-2012, 06:58 PM
" Originally Posted by TAMZTOM
I read in this forum of many people who lead active lives until their 50s and 60s, then accept surgery. I haven't read a single account of anyone wishing they'd done it earlier."


I am 34 and when I was 13 the doctor wanted to do surgery after bracing failed and my mother let me make the decision not to. Since I was 20 I have been in horrific pain, especially after giving birth to my four children.

I am almost two months post op and the pain now is so much better than and every day gets easier. The first couple of weeks I wondered if I made the right decision, but it was more about going withSSBOB instead of full fusion. Today I was able to cut my own toenail and there was no pain. I also drove 45 minutes to and from taking my son to meet his ride for wrestling practice and I have minimal pain. Next Thursday I start back to work half days and am excited because my pain now versus when I took off from work is so much lower.

In saying this, if I knew when I was a teenager of how serious the problem was and if my mom had stepped up and made the decision instead of letting a child make that decision I may have never lived so many years in pain. I am one who would say if technology was yesterday what it is today I wish I would've had the surgery done so much earlier.

Tamena

TAMZTOM
12-18-2012, 07:23 PM
Thanks for sharing your experience. I've now heard from someone who wishes they'd had fusion earlier. I should have qualified my original comment to reflect that for people like yourself, in so much pain, surgery would have been the preferred option. I will endeavour to qualify my posts better in future.

Thanks...and I'm glad you're feeling better.

Regards


I am 34 and when I was 13 the doctor wanted to do surgery after bracing failed and my mother let me make the decision not to. Since I was 20 I have been in horrific pain, especially after giving birth to my four children.

I am almost two months post op and the pain now is so much better than and every day gets easier. The first couple of weeks I wondered if I made the right decision, but it was more about going withSSBOB instead of full fusion. Today I was able to cut my own toenail and there was no pain. I also drove 45 minutes to and from taking my son to meet his ride for wrestling practice and I have minimal pain. Next Thursday I start back to work half days and am excited because my pain now versus when I took off from work is so much lower.

In saying this, if I knew when I was a teenager of how serious the problem was and if my mom had stepped up and made the decision instead of letting a child make that decision I may have never lived so many years in pain. I am one who would say if technology was yesterday what it is today I wish I would've had the surgery done so much earlier.

Tamena

Pooka1
12-18-2012, 07:31 PM
Thanks for sharing your experience. I've now heard from someone who wishes they'd had fusion earlier. I should have qualified my original comment to reflect that for people like yourself, in so much pain, surgery would have been the preferred option. I will endeavour to qualify my posts better in future.

No actually in at least some subsurgical and maybe in surgical curves, PT works pretty well for pain. I think it works better than surgery in certain cases, maybe lumbar and such. Linda might know.

In cases where people are subsurgical or are not progressing I think surgeons ask adults to try PT for pain before trying surgery for pain. That is my impression but Linda will correct me if I'm wrong.

This doesn't apply to large progressive T curves in kids as far as I know. Those are clear surgical cases where surgery is required to stop and correct progression irrespective of pain levels.

Pooka1
12-18-2012, 07:38 PM
Patients don't "dilly-dally" trying various conservative treatments. I've met parents and kids who have literally travelled globally, worked their goddamn asses off, trying to correct, and not succeeded. One in particular is now researching the various surgical alternatives. Gut wrenching for the family who really did try. But they were sucked in and mal-treated by the dispensers of some treatments. ALL treatments can improve, surgery and non-invasive methods. I hope they ALL do improve.

Sorry I was unclear. I meant kids who are in surgical range and risk longer fusions, especially into the lumbar, from waiting.

I do not fault anyone for doing anything (or not doing anything) when they are in the subsurgical range.

jrnyc
12-18-2012, 09:08 PM
hi Sharon
i personally see child/adolescent scoli as having such different issues
than adult scoli....whether the adult was diagnosed when in adulthood,
late in life, or they had scoli from teenage years and diagnosis was just
missed (which i think is my case)
thank goodness most kids seem to heal so quickly compared to adults...
it means that they hopefully do not lose much time being kids/young
adults....and hopefully in most cases, they are not restricted from very
many activities...
for adults, i think the decision can get harder the older one gets...
not that the decision is easy for parents and their children...i just
think it is more clear for kids when the curves are large and progressing
rapidly...
watching the kind of progression you describe in one of your daughters
sounds terrifying, frustrating, and ultimately like the need for surgery
became more clear the longer the months went on...

i have read several comments by adults who had good surgical outcomes
who said they wished they had the surgery sooner...

jess

Cornerthree
12-28-2012, 04:01 PM
I keep reading on the web very sad and disturbing stories by young girls that have had the surgery and then later regretted it. And when I read the teenage section of this forum, all the teens talk about the surgery in the same way I did when I was their age...as though it's no big deal, as though it is an alternative to a brace. It should not be presented to patients as an alternative; it should be for severe, progressive cases that a brace WON'T fix. Very sad. I do not feel that these youth (or their parents) are being honestly informed about the surgery. And I still maintain that there is little long-term info on exactly how people fare as they get older with this surgery. For me, living with a fused spine at age 40 something feels very differently than living with it at 20.

Pooka1
12-28-2012, 04:56 PM
I keep reading on the web very sad and disturbing stories by young girls that have had the surgery and then later regretted it.

How do you determine how representative these testimonials are compared to all the testimonials where kids gain their life back from the surgery like my two kids?


And when I read the teenage section of this forum, all the teens talk about the surgery in the same way I did when I was their age...as though it's no big deal, as though it is an alternative to a brace. It should not be presented to patients as an alternative; it should be for severe, progressive cases that a brace WON'T fix. Very sad.

Surgery is not an alternate to bracing and no experienced pediatric orthopedic surgeon would ever say so. The ranges don't overlap AT ALL. The bracing range is 25* - 40* (or 20* with demonstrated progression) and the surgical range is 50* and above (40s* with demonstrated progression).

By the way, braces don't "fix" curves. At best they halt progression and possibly only to the point of maturity. There is no evidence bracing has let anyone avoid surgery for life. Please look at the bracing literature which is an unfortunate train wreck.


I do not feel that these youth (or their parents) are being honestly informed about the surgery.

I'm not sure how you know this. I was fully informed for instance when pulling the trigger on surgery for my daughters. One and likely both would be dead by now absent surgery and both would have had their lives ruined absent surgery as a FACT. I call that informed.


And I still maintain that there is little long-term info on exactly how people fare as they get older with this surgery.

Some is known. And some is known about what happens if you withhold surgery in many cases. Normal is off the table. Surgery is a rational choice for cutting known losses.


For me, living with a fused spine at age 40 something feels very differently than living with it at 20.

I am sorry you are having problems now and I hope you think about investigating revision surgery. You have a fusion well into your lumbar (L4 I think you said) with old instrumentation. That makes TWO reasons why your surgery might not be expected to be stable your whole life. I am sorry if your surgeon didn't tell you this. Maybe it wasn't known then, I don't know. Fusions to L4 are known to require extensions in most people and H rods into the lumbar are known to cause flatback. Most kids have only a thoracic curve and there are studies at least 2 decades out showing these tend to be stable at least that long with the newer instrumentation. In fact T curve fusions can be stable even with H-rods as I understand it. It's the lumbar part that everyone struggles with because that has not been solved even today. It is a mercy that most kids do NOT have lumbar involvement... T curves dominate in terms of frequency.

I feel very bad for you because I think you might have been blind-sided by realizing your fusion would not be stable for life. But you need to realize NOBODY's fusion to L4 is stable for life, not even those being fused today. So the question is were you better off during those years of being fused compared to how you would have been without fusion? You had a large progressive thoracic curve. Would you even be able to walk now if you didn't halt the progression? Would you be able to breath unassisted? Do you really conclude you made the wrong choice?

These are the questions I faced in agreeing to fusion surgery for my daughters. One would likely be dead now anyway if she wasn't fused so sitting in a wheelchair and breathing at all, even on a vent, would be luxuries for her. Instead she leads a normal life... feels normal and looks normal. Huge win. And that is the norm which is why large T curves are fused. If it wasn't the norm then we wouldn't see so many surgeries or any surgeries.

tae_tap
12-28-2012, 07:27 PM
If technology was like it is today when I was told I needed surgery at 13 after three years of bracing (which by the way did not fix my curves in any way) I would've opted for surgery then. I opted not to have surgery and lived 20 years in pain due to wanting to wait as l as I could because of being scared off by stories like these and thinking advancement in the field would happen over time.

So you can't say that these teens having surgery are going to fall into the same category as you when they are older or that bracing is the answer instead of surgery. I am an example of the other side of waiting, curves progressing, ending up with major pain, and having to stop life for recovery.

You have a right to share your story, but the scare tactic of putting what you think will happen down the road with other people is to okay. No one can see into the future for what is to come and having a positive attitude is important with support and overcoming the recovery from this surgery. I for o am thankful that this post was not here prior to my surgery in October because I would've been sick to my stomach with fear. So for those of you that are reading this and second guessing your decision or surgeon for fear of having a bad experience, you have to have faith and a positive mindset.

Tamena

jrnyc
12-28-2012, 07:57 PM
Tamena, if you had the surgery 20 years ago, would that have
been Harrington rod surgery...?
i am asking because if it had been Harrington rods, there is no way
to know whether or not you would still have been living in pain after
the surgery...of course, there is no way to know what "might" have happened,
good or bad.
i am glad your results from surgery this year were good and that you are
pleased with the decision you made...

i have not had surgery...yet...though every top guy i've seen in the field
has told me they recommend that i do...to the sacrum.
i read corner's threads with interest, but am aware that the surgery that
took place in her case is not the same as what happens today...
i think...at least i hope...that others read it with the same awareness...
still, i am grateful for all points of view...including hers...and i
ache for her regrets...and her pain...i feel so bad for her, even as i am
aware that no one of us can know the "what if's..." of any life...
i do not even know the "what if..." answers to my own life....

jess...& Sparky

tae_tap
12-28-2012, 08:14 PM
Tamena, if you had the surgery 20 years ago, would that have
been Harrington rod surgery...?
i am asking because if it had been Harrington rods, there is no way
to know whether or not you would still have been living in pain after
the surgery...of course, there is no way to know what "might" have happened,
good or bad.
i am glad your results from surgery this year were good and that you are
pleased with the decision you made...

i have not had surgery...yet...though every top guy i've seen in the field
has told me they recommend that i do...to the sacrum.
i read corner's threads with interest, but am aware that the surgery that
took place in her case is not the same as what happens today...
i think...at least i hope...that others read it with the same awareness...
still, i am grateful for all points of view...including hers...and i
ache for her regrets...and her pain...i feel so bad for her, even as i am
aware that no one of us can know the "what if's..." of any life...
i do not even know the "what if..." answers to my own life....

jess...& Sparky

Yes it would've been Harrington. My point too was that no one case can be looked as "this is going to happen to you". I have always wondered if I would have experienced the pain if my mother had made the decision for me to do surgery instead of allowing me to make that decision as a child. But, now I say no regrets. Anything we choose requires us to have faith and everything happens for a reason. The only thing that makes it easier to step out with blind faith is the support from those here on the forum, support at home, and faith in general. There is a difference between being the voice of reason and just flat out being scared. No surgery is a 100% guarantee and there is always a chance for revision (heck, my mom has had four hip replacements). I for one stepped out on faith with doing SSBOB and know there is a huge chance that I will require a revision later on, but if pain is the driving force behind seeking surgery and not a cosmetic reason then it is easier to step out on faith that it will work. I am just thankful for all the positive support and encouragement I have received from those on the forum.

You will come to your decision when the time is right for you. Everyone has "the final straw" and when the time is right you will know in your heart and gut.
Tamena

jrnyc
12-28-2012, 08:52 PM
i hope your surgery gives you long term pain relief,
and i hope revision can be avoided in your case...
scares me that even with top surgeons, good hospitals, etc,
and following doctor orders to letter, it seems a little tiny bit
of luck can come into play...even in 2012...
else how to explain sometimes very different results from top surgeons
who have similar patients, similar presenting problems, situations, etc...

wishing all a less painful, pain free (hopefully) 2013

jess...& Sparky

Karen Ocker
12-29-2012, 04:45 PM
My case which I often restate: First surgery, NO Hardware, age 14 in 1956(!) by Dr. John Cobb of Cobb angle fame. Triple curves-largest ~100 deg. Fusion T-4 to L-2. Lived 44 years with a fused spine, became an RN and later nurse-anesthetist-nurse practitioner.
Curves were only slightly reduced and "balanced". Still had a significant hump and right shoulder slightly lower. Certainly not done for cosmetic reasons(never is). In my 50s my fused spine, but unsupported by NO hardware, collapsed. I began to become bent over and lost lung capacity. I elected for a revision at age 60-in 2002.
I AM NOW 70 1/2.
One does what has to be done for quality of life and health. I am PAIN FREE. To wait for the spine to get SO bad that one can hardly walk seems like folly to me. If the curves are progressing in adulthood nothing but surgery can stop it. Pains can be ameliorated somewhat with assorted therapies and medications but the source of the pain is not removed-only masked.

No one on the forum is a surgery nut and "loves" fusions. There is wide spread gratitude that a remedy exists. Doing the surgery before massive deformity, enables a better correction, faster healing and quicker return to a normal, productive life.

golfnut
12-29-2012, 05:50 PM
For what it's worth, I totally agree with Tamena and Karen Ocker.

leahdragonfly
12-29-2012, 06:19 PM
<snip>...according to the research suggesting 60% spontaneous correction of kids with growth remaining, will improve more.<snip>


Hi Tom,

This thread is too time-consuming for me to follow closely, but I am glad to hear Tamzin is doing so well.

Could you please comment/elaborate on your comment quoted above about 60% of kids with curves under 20 degrees having spontaneous corrections? I have never seen any statistic like that. Do you have a link? It would certainly give me hope for both of my kids who now have JIS (both currently under 20 degrees, one improved after stapling and one with an emerging curve). We were told that in JIS, 70 % progress and 30 % don't, and of those that progress, a huge percentage progress to surgery (some quotes as high as 95%). Not too encouraging.

Thanks,

TAMZTOM
12-29-2012, 06:51 PM
Hi Tom,

This thread is too time-consuming for me to follow closely, but I am glad to hear Tamzin is doing so well.

Could you please comment/elaborate on your comment quoted above about 60% of kids with curves under 20 degrees having spontaneous corrections? I have never seen any statistic like that. Do you have a link? It would certainly give me hope for both of my kids who now have JIS (both currently under 20 degrees, one improved after stapling and one with an emerging curve). We were told that in JIS, 70 % progress and 30 % don't, and of those that progress, a huge percentage progress to surgery (some quotes as high as 95%). Not too encouraging.

Thanks,

Hi LeahD

I've got the link in my notes...hunting for it now!

Regards
Tom

tae_tap
12-29-2012, 07:19 PM
Karen Ocker,

Do you have pics of your spine now? I am amazed at having surgery in the 50's and not a problem for so many years. You are a walking testimony for early correction. Thank you for sharing!

Tamena

jrnyc
12-29-2012, 07:38 PM
maybe i read it wrong, but the surgery in the 1950's didn't sound, to my reading, like much of a correction...
perhaps i misinterpreted it...

jess

TAMZTOM
12-29-2012, 07:49 PM
Hi LeahD
I've got the link in my notes...hunting for it now!
Regards
Tom

Found this paper, but I'm not sure it's the one I was looking for...along the same lines though. Not quite as optimistic, 25% regressed, 40 off % stabilised. That's 60 odd percent non-progressive, but not all regressive.

http://www.josr-online.com/content/pdf/1749-799X-5-80.pdf

If I'd been offered a 60% chance of Tamzin not progressing back in June 2011, I'd have bitten the arm off the person offering to accept. With a postural percentage in every scoliotic curve, taking the stability and then knocking off even the postural percentage was attractive back at diagnosis. E.g., Tamzin T40 - 42 on x-ray; T25 - 27 on MRI; rough approximation back then suggested to me that I'd get her down to 25 on the thoracic. We have. Did better on the lumbar curve so far, down from 39 to approx 20 (it's really better than that now--right in the mid-line, so probably closer to 10 - 15 all day when standing).

I've read other stuff here and there about working the muscles hard during "precocious growth spurts", JIS territory. With Tamzin, we MAY have caught her still in the equivalent of a 9 yr old frame as she did/does have delayed growth because of the neuro issues. Regardless of aetiology, asymmetric muscle strength is a factor in progression; catching the kids really young can address that aspect of progression and quite likely tip the scales towards stability or correction. We tried to counter every single aspect of postural imbalance and muscle asymmetry and the scoliotic neuromuscular system to increase the chance of stability and correction. It seems logical to suggest that some of these kids who spontaneously regress or spontaneously correct accidentally adopt alternate muscular strategies that stop progression; if they're below that 25 degree mechanical threshold for progression, growth can assist the correction/stabilization process.


In present study, we reviewed the curve pattern of immature idiopathic scoliosis patients; and observed different
pattern of curve during progression, regression or resolution of curve. Based on our observation we think that tuning or balancing mechanism of spinal column may be an important factor in progression, stabilization or regression of curve, especially in mild degree early curves. We tried to answer our question that in growing spinal muscles or ligaments try to balance the whole spinal column as they get matured and, due to this balancing mechanism mild scoliosis curve shows regression or resolution [24]. Those paraspinal muscles that can’t balance enough, scoliosis curve will progress.

It's a rational chance. We grabbed the chance with both fists and it's worked so far. Ours wasn't accidental though as we choose what to do. THAT'S WHY I'M UP HERE RESEARCHING FROM EARLY MORNING TO EARLY MORNING! There is enough good science out there, much of it discarded, that allowed me to sift and use what I decided would work. On that foundation, we developed our own stuff on top, still backing it up with solid scientific principle and fact. We simply couldn't wait for long-term research to decide how to effectively deliver effective non-invasive treatment.


OTHER QUOTES FROM THE PAPER:

The incidence rate of changing pattern was noted 46.1%. The possible reason for these changing patterns could be better explained by the tuning/ balancing mechanism of paraspinal muscles which try to balance the spine, and result into spontaneous regression or stabilization of curve.

The other theory proposed for progression of scoliosis is paraspinal muscle imbalance by several authors. Ford et
al [17] suggested that underlying cause of the adolescent idiopathic scoliosis might be the imbalance in the deep
muscles at the apex of the curve. They supported the hypothesis of Fidler and Jowett [35] who suggested that
increased tonic activity of the deep medial paraspinal muscles, such as multifidus, on one side of the spine
and a consequent effect on vertebral growth could be of importance in the aetiology of idiopathic scoliosis.

We did not find any relationship between side of curve or number of curve and regression, stabilization or progression of curve; however, boys had higher chances of regression than girls. Additionally, our results proved that there should be possibly other factors responsible, especially in skeletally immature children that might have impact on fate of curve. Since muscles cause movements and maintain tonus, they can be considered to produce skeletal deformities in situations of imbalance [37]. In other words, situations of imbalance of the back muscles may be the only causal factor for scoliosis.

While Weiss showed decrease in muscular imbalance between convex and concave side with physical rehabilitation program that ultimately reduced the Cobb angle in their subjects [23].

I don't like citing Weiss as...well, I don't like the guy. However, I'll suck it up for the moment. Despite problems with all this research being non-conclusive, etc., there are clear cases of SOME few kids correcting in them all. Those are the ones I focused on: how did this one out of so many correct? I stitched all that type of stuff together to give us a start. It's not that some of these methods don't work, it's that the methods are not implemented (taught, practised, ingrained) in a manner that's even likely to work. We did in differently to what's on offer out in the marketplace.


Thus, based on these literature reviews it is clear that in skeletally immature patients with mild scoliosis paraspinal muscle try to get activated and balance themselves which might be a responsible factor for spontaneous resolution of curve. Once muscles fail to balance and disc or vertebral end plates start showing changes in growth plates, the curve will show progression of curve. We showed that 46% of cases in our study initially exhibited changing pattern in their curve and later on it become stabilized in one pattern. This points out that in skeletally immature children, when curve starts to appear, paraspinal muscles try to balance the spine by their inherent “balancing or tuning mechanism” for a short period of time till it stabilizes into a single pattern. This spinal balancing mechanism might result in a wavy pattern of Cobb angle during the follow-up till it follows one of final path of progression, stabilization or regression (Figure 3).

The scenario is even better: wedged discs and vertebrae can be remodelled with appropriate force, especially so with young kids (compared to older kids...but the theory still applies to older kids and adults).


Conclusion
Present study shows the possible role of spinal column tuning mechanism in skeletally immature children with
mild scoliosis curve for regression, stabilization or progression. If rehabilitation or physical therapy program is
applied during this period of immaturity, scoliosis curve might regress with increased activation.

We didn't gamble, we took the chances and made them work. We'll keep doing that in an attempt to get her through more growth, but the 14cm of growth so far--during puberty--give us reason to continue.

Karen Ocker
01-02-2013, 04:38 PM
maybe i read it wrong, but the surgery in the 1950's didn't sound, to my reading, like much of a correction...
perhaps i misinterpreted it...

jess

Jess, you are right.
The correction involved reducing my thoracic curve to "balance" my 3 curves. I has some cosmetic improvement. This was done with a turnbuckle jacket- a cast with a hinge on one side and a turnbuckle on the opposite side. It was turned every day to stretch my spine to the desired correction. That was the state of the art in the 1950s. Only extreme cases like mine had surgery. Hardware was not invented so a year no walking(!) in a series of casts after the 2 stage surgery- done through a hole cut in the back of the cast- was performed. Bone was obtained from a bone bank.
As primitive as that sounds it gave me 40+ years of a normal life. I had no difficulty making the decision for a revision with the modern advancements-- and that was 10 1/2 years ago!

Karen Ocker
01-02-2013, 04:50 PM
Karen Ocker,

Do you have pics of your spine now? I am amazed at having surgery in the 50's and not a problem for so many years. You are a walking testimony for early correction. Thank you for sharing!

Tamena

I have not taken any photos. My case in the 1950s was NOT early intervention. The thinking , at the time, was to wait for skeletal maturity and for the progression to "stop"(?). By then I was a pitiful sight. My mom sent me to a chiro and I really wonder whether that made me so flexible that my curves got worse. My sister, brother and girl cousin have scoliosis but none of them needed surgery. They did NOT have chiro.
My mom's back got really deformed in old age-lived to 93- but her back never bothered her.

Susie*Bee
01-02-2013, 04:58 PM
A friend of mine from church also had surgery back then, with no instrumentation, was in a cast on her back for a year. She lived a full life up until about 8-10 years ago. Now her curves are so bad and she is so frail that no one will touch her with a 10 foot pole. I think her main curve is well above 100º and she is in constant pain.

Confusedmom
01-03-2013, 11:21 PM
Thanks for sharing these stories. Helps me understand why doctors always say do it while you're younger.

Izzy
02-15-2013, 09:08 PM
Although I had this surgery fairly recently, I disagree that this is still the case. I know all the complications that were arising during the time that they were using Harrington rods and the procedures have become much more advanced and less risky. I had my surgery a little over 2 months ago with a double curve around 50/50. Not only did I feel absolutely no pain but I was off of narcotics 2 days after my surgery and could take care of myself completely in around 8 days. At 2 months post-op I am back to normal. I've been back to work and school for about a month now and the only thing restricting me is my weight limit. I was right on the cusp to have the surgery and I'm so glad I did. I have absolutely no pain whereas before the surgery, I was constantly sore. In my opinion, I would wholeheartedly recommend it to anyone who might be wary.

jrnyc
02-16-2013, 12:45 AM
Izzy, not everyone has such a successful outcome...
there are patients on forum who report having surgery with TOP
surgeons, following all instructions and doing all they were told to
do for aftercare, yet end up with problems, needing revision, or
in pain after the healing period....
and if you talk to some of the top surgeons, they will agree that
surgery should be a last resort...
surgery presents different problems depending on the age of the
patient....
but several surgeons will say that only when the patient has no place
left to go, no other option, and cannot function anymore is when they
will go ahead and agree to operate...
those doctors are often considered more "conservative"...
but they are out there, and they are excellent doctors.


jess...& Sparky

Susie*Bee
02-16-2013, 08:15 AM
Although I had this surgery fairly recently, I disagree that this is still the case. I know all the complications that were arising during the time that they were using Harrington rods and the procedures have become much more advanced and less risky. I had my surgery a little over 2 months ago with a double curve around 50/50. Not only did I feel absolutely no pain but I was off of narcotics 2 days after my surgery and could take care of myself completely in around 8 days. At 2 months post-op I am back to normal. I've been back to work and school for about a month now and the only thing restricting me is my weight limit. I was right on the cusp to have the surgery and I'm so glad I did. I have absolutely no pain whereas before the surgery, I was constantly sore. In my opinion, I would wholeheartedly recommend it to anyone who might be wary.

Izzy-- I am so happy for you that you had such a quick and wonderful recovery! Hurray! But even in this day and age, some of us take much longer-- it was at about 3 or 4 months that I realized I could not go back to my school job and ended up taking a year off. I had lost my strength and endurance. I was on the stronger (hydrocodone) pain meds for 5 months, then milder ones for awhile after that. I worked very hard to build myself back up, but it's not a always mind over matter. It was bullheadedness and determination and time that got me back in shape. In the course of my time on the forum, I have witnessed some heartbreaking tales, so there aren't always fairytale endings. USUALLY people's surgeries end up fine, recoveries vary, but surgeons, no matter how experience and well-known they are, always give a caveat because it is a serious surgery. Age does play a factor, but even some younger people have experienced problems too.

As for my friend from church who had the surgery similar to Karen's (fusion without instrumentation) -- her back is so deformed now and her spinal cord is so tangled and there is so much wrong that they just can't do anything plus she has severe osteoporosis. Even without the tangled mess she is in, there is a point they will not operate because of problems they can't overcome. At least that is what I've read/heard.

rkochis
02-17-2013, 06:59 AM
Cornerthree
After watching this video, all I could think of was your post. I have used this method in the past and still use some of the e-cises daily. I have not had surgery so I cannot directly relate to your issues. But, this video does.
http://www.youtube.com/watch?v=av8dwWXbCrU