Information pre-surgery

[Diana Black]

A lot of the postings on these boards have got me wondering how well informed we are before surgery. For example, I was never told that, once the vertebrae were fused, the unfused ones would have to take the strain; that I would have areas of permanent numbness; that my torso would twist round as my spine was straightened.
Almost everyone here has a lot of pain despite having had the ops, yet the consultants seem to give the impression that all our problems will be fixed by the surgery. Is this just because we aren't followed up after the first year or so, so they don't actually find out about problems in later life? Or are they only concerned with the immediate results of the surgery and the often impressive 'before' and 'after' photos?

[Kkong]

Regarding pain

Hi.

I'm 49 and am going for my third different surgeon consult and am on my way to surgery sometime early next year.

My surgeons have never promised me a pain free life in the future after surgery, but I'm doing it because my spine will soon limit my breathing capacity in the future. I think everyone has different results but with the degrees of curvatures we have and the prospect for progression in the future leads us to surgery.

Kkong

[LindaRacine]

Almost everyone here has a lot of pain despite having had the ops, yet the consultants seem to give the impression that all our problems will be fixed by the surgery.

While that may be true here (although I think I even doubt that), it's not at all true in general. Most people who have scoliosis surgery have good outcomes. You can view links to abstracts on scoliosis surgery outcomes here:

http://www.scoliosislinks.com/SurgeryResearch.htm

I believe that the reason it seems that so many people complain of bad outcomes is that most people who have good outcomes get on with their lives, and have no need to frequent this type of forum.

With that said, there is definitely a significant risk of complications and long-term pain after scoliosis surgery. And, no one should ever take the decision lightly. Luckily, at least here in the U.S., surgeons know have to inform patients of the significant risks of this surgery, including the fact that there's a possibility of degeneration above and below the fusion. In 1993, before my surgery, I was informed of just that complication.

Regards,
Linda

[sweetness514]

A lot of the postings on these boards have got me wondering how well informed we are before surgery. For example, I was never told that, once the vertebrae were fused, the unfused ones would have to take the strain; that I would have areas of permanent numbness; that my torso would twist round as my spine was straightened.
Almost everyone here has a lot of pain despite having had the ops, yet the consultants seem to give the impression that all our problems will be fixed by the surgery. Is this just because we aren't followed up after the first year or so, so they don't actually find out about problems in later life? Or are they only concerned with the immediate results of the surgery and the often impressive 'before' and 'after' photos?

Diana,

ITA with you, and I think that doctors are like this in many fileds of medicine, they basically try to deal with problems WHEN THEY ARISE. Now, I notice that SOME do talk about post op complications, and are more careful in their approach and opinions. I also think years ago they didn't know about all the complications and repercussions that could occur.

I do believe that a lot of people don't have many post op problems, but many do and that is IMPORTANT to notice and talk about, particularly on this forum. I for one prefer knowing all that can hapepn, I don't like living in denial and even if I like positivity reality is even more important. The best advice I got pre and post op was from a woman who had surgery a few years before me. She told me that it was the most excruciating pain she had ever lived(combining all her pregnancies and childbirths), and that it took her two years to heal, plus she told me about all the ugly details and setbacks. Even if she was honest with me I was not even as prepared as I should have been for what the recovery was and the pain, so imagine if she would have sugar coated it? it would have been a disservice.

Also, I know that a lot of people who have no problems post op don't come on these forums, but also a lot who DO have problems don't all come on forums(some that I know IRL from everywhere, not just around here),and not all have the internet. I sure would have loved to have the internet when I had my first surgery and get info from forums like these, as it has taught me so much and prepared me MUCH more for my last surgery.

As far as telling us about post op problems, the only thing I was told is that it wasn't a guarantee that my curve pain would be solved(wich was refreshing to be told the truth), nothing about DDD or broken hardware though. A spinal fusion is one of the biggest operation one can have, and they HAVE to tell us all the risks, even long term.

Take it easy, and even if we can be pissed at doctors for not being truthful about everything, we know we can trust ourselves and sometimes know better

[Diana Black]

Thanks, Sweetness. I think about the most important thing about this site is that you can feel you're not alone and you're not just whingeing, so just to have someone see my point of view means a lot. Dianax

[ck43]

Linda, people who have never had surgery or scoliosis are "prone" to degeneration in their discs. I am in the care (briefly I hope) of the Sonoran Spine Center here in Phoenix, and my first question about degeneration of C5-C6 was, "Is it because of my scoliosis?" No.

Are you sure? And it's not because of my scoliosis, right?
And it's nothing that I did, right?

I'm 43. Here's some quick info I culled from the Net:

By the age of fifty, 85 percent of the population will show evidence of disc degeneration. The vast majority of these cases are asymptomatic.

Causes
Aging is the most common cause of disc degeneration.
As the body ages, the discs in the spine dehydrate or dry out, and lose their ability to act as shock
absorbers between the vertebral bodies.

But Linda? You can be sure I will ask again, Nov 2nd, MRI images, in hand, "And it's not because of my scoliosis. Right????" Drs Slaughter and Crandall are supposed to be tops. At this point it really doesn't matter. Had the answer of been yes I would have blamed myself somehow or generated some self-loathing of myself and perhaps felt some new hatred for my scoli, and/or sense of betrayal and myriad other negative thought.

Fusion: Harrington rod, bone graft, age 15. Dr. John Hurley, Spokane, WA

[sweetness514]

I believe that scoliosis is not the only reason for DDD, but it can aggravate it, and a fusion can too. All my doctors and PTs told me so and I believe them. That doesn't mean that a person who doesn't have scoliosis won't have more DDD than me, if for example they're prone to that OR have not taken care of their backs.

[Snoopy]

Diana,

In some respects, I've learned more from this forum (and other sources) than I did from my daughter's doctor. The doctors tend to answer your questions about surgical stuff, but what about immediately afterwards? For example: I shocked Jamie's doctor when I asked if she would need to be pre-medicated for dental appointments; I don't remember Jamie's doctor telling us anything about her starting her period after surgery or anything else like that.

However, in the doctor's defense, he did have us prepared for anything surgically that could happen. He warned us that some people develop junctional Kyphosis after surgery. I'm glad he told us beforehand, because my daughter is one of the unlucky people who developed this. He told us about the unfused vertebrae taking some extra abuse. When I asked him if he would fuse her down to below her Spondolenthesis (sp?) he said he would rather leave as much of the lumbar unfused as possible and he explained why.

I don't know how long doctors tend to follow their patients. Jamie will be 2 years post-op in December and is still seen every six months and it was the same even before we discovered the junctional Kyphosis. I personally think spinal fusion patients need to be followed at least yearly or every other year. Maybe if they were followed more closely, the doctors could catch problems earlier. Just a thought.

I am very grateful for this forum. Even if we are whining, there is always someone here who understands and doesn't critize us for our feelings.

Mary Lou

[Shari]

I'm not sure I should post here because I'm not yet a revision candidate. But I feel that some very important issues have been brought up. It's hard to be brief with a subject so deep!!!

My T- curve was 33* and very flexible and my L- was 59* and not flexible. My doctor explained to me that he thought it was best to go from T-1 or T-3 to L-5 because of the strong possibility that I would have problems in the future above and below the fusion areas. And that any future surgery, if required, would be less stressful... I had 5 discs, a rib and some hip removed during anterior, then 6 days later the rods and screws inserted.

Too my surprise, I was released at 1 year post-op. I guess I expected some kind of follow up procedure. And I believe that someone should continue to monitor our outcome. Why do we have to wait until we have a problem???

Please don't take this wrong, I am so grateful that there are surgeons that have taken their time and skills to help us!!! I guess I just wonder why we aren't referred to someone that can monitor our situation after surgery???

Looking for an answer,
Shari

[RoundTheTwist]

I just wanted to add my 2 pence (cents?) worth in too.

I too was released from my Hospital here in the UK after about 1 year after my surgery and was told on the last appointment after askng lots of questions "You can do whatever you want to do, except maybe parachuting (darn - LOL) Goodbye, have a nice life"
I was 16 years old.

I am now 2 weeks away from my revision surgery and sometimes feel really angry, we were told nothing about the possibility of anymore surgeries so my initial reacion was total shock when I first heard I had to have another surgery. We were told nothing about disc degeneration, flatback or the possibility of broken rods, all of which I have, everything I have learned about Scoliosis in the past 3/4 years has been on the internet through searching the web initially and then discovering forums and groups like this one, firmly believing all the whilke that I can't be the only person in the world who has had problems after Scoliosis surgery (and actually praying please God don't let me be the only one in the world to be like this, not that I want others to suffer as I am, you must understand, but it was SO lonely for a while).

I too believe that my probems may have been picked up much earlier had I been followed up everyother year or so, I was even refused o be seen by a Scoli surgeon when I was pregnant BECAUSE I was pregnant, so no support there when I really felt I needed it most.

I have to say while I am here how good it is that we can help the next generation of Scoliosis kids, and inform them so much better than I was informed at their age, all I had was 1 thin book about Scoli, I think I may have made different and better decisions had I been better informed all those years ago. I think kids these days are very lucky.

Well I could go on for hours here, but I won't so if theres anything that can be done for the future let me know.....

Kat x

[felix999]

Question for Kat

Kat,

I am living in London and am about to go see a surgeon to have my back reviewed ( Spinal fusion at 20, rods removed at 24, castoplasty at 25 ). I am having pain when lying flat and think the curve is increasing. What surgeon is doing your surgery? All my previous experince has been in Ireland and I dont know any surgeons here only those recommended by doctors.

Thanks
Amanda

[ck43]

Twisty and Kat

Hey Twisty and others, anyone told not to lift more than ten pounds for the rest of their lives? Dr. Hurley said I should be good if I didn't lift more than 10 lbs. At the Y I've been lifting ten pounds in each arm....

Kat, I find adding JAMA to search terms is a way to get to the meat of research. JAMA is what the doctors read.

As for long term follow-up, I read a rather depressing report on women who went through all we did; our self-esteem, divorce rates, drinking, etc. I am not divorced etc. and I am not blaming anyone but the residual neglect of our personal pschologies at ages so tender and sensitive to what othes thing? 13, 14, 15, 16.

Support groups like this have got to help the kids especially.

Think of all the guinea pigs before us. If I have to go back for surgery I at least won't have to worry about someone ... f'ing up on my pain meds or calling me a clock-watcher. Did I look at the clock? Yes. Why did I look at the clock? Because it gave me strength, i.e., I only have to go so much more: I can do this.

I also don't have to worry about someone wedging me in, and forgetting my call button. These days we can push the button for pain meds. Although... there's still the matter of the call button. I was rescued finally by a big black RN woman. She could not have been more merciful and more my mother. She was transparent. I was in the hands of a soul and I knew it. I fell back to sleep after I got my injection, morphine, with her presence there, warm, protective. Safe.

Okay, ladies, now we know better, so what is CURRENT follow-up? With new fusions do we insist on follow-up checks, once released?

I am really glad to have you guys and I am sorry I went into the past.

[sweetness514]

As for long term follow-up, I read a rather depressing report on women who went through all we did; our self-esteem, divorce rates, drinking, etc. I am not divorced etc. and I am not blaming anyone but the residual neglect of our personal pschologies at ages so tender and sensitive to what othes thing? 13, 14, 15, 16.

I remember my parents seeing that it was difficult for me to wear that painful brace for years and all the effects of scoliosis(not just physically, but emotionally too), and being the way they are they didn't talk to me about it much, and I was shy and introverted and kept all of it to myself. If I had seen a shrink then, it wouldn't have come out b/c at some point my mom sent me to one to just get out of my "shell" more and it wasn't fruitful, and I only went in for a few visits. The only time I see that I want to talk about all scoliosis has affected in my life(b/c of the surgeries now too), is now. It seems it's all coming back, and I know it's b/c I had other surgeries and thought it would be over, and also I realize just how big of a deal it truly was. Again, I can't even compare my journey to others here, who had a year to stay in bed, tractions, etc. Hat's off to you ladies,

[RoundTheTwist]

For Amanda, and others

Hi all,

Amanda - I assume you are under the RNOH in Stanmore? That is where I am, my surgeon is Mr Harrison, he is lovely, got a fab sense of humour, a great bedside manner, and from what I can find out, most importantly, an excellent surgeon. There are also some other very good surgeons there aswell, you might like to join a British Forum as well, I will PM you a link. They are friendly bunch as are here, I love this site as it is very active and love to chat to people in the US as their med system is a bit ahead of us and people seem to know more, but it is nice to chat to UK people as well as sometimes things are a bit more relavent (No offence intended peeps!)

CK43 and Sweetness and others - I don't now about you guys (but I'm betting the answer to this one is a NO) but I never had any counselling or anything when I had my original surgery and I haven't been offered any this time either, even though I had heard rumours that the do counsel Scoli kids these days.
We were expected to 'just get on with it'. My self esteem has always been bad, I don't know what normal means, but I always felt different, and I know its due to my Scoli. Having said that though, nowadays, I don't tend to hide my back, I wear whatever I want even if it shows off my wonky shape. It was a different story pre-surgery in 1991 though!

I do totally agree with you Sweetness about the fact that we have not been through that guinea-pig stage of traction and total body casting, so in some respects we 'got off light', I have heard some awful horror stories about kids in Traction, and I really feel bad for those people who were forced to endure that kind of treatment.
I was a bt of a guinea-pig in the UK though, my surgeon was doing 2 trials at the time of my surgery, 1st was Zimmer trial, using 'fake' bone for grafts, although I agreed to use the Zimmer I was not selected and had bone graft from my pelvis/hip which is causing me absolute agony these days and is one part of my upcoming surgery, the 2nd was to do the whole op, bone graft, rod, hooks, wires and costoplasty all in one go, I apparently was one of the first in the UK to have this done, with the result that I spent 5 days in ICU and had to have 6 pints of blood, and ended up begging to go back to the regular ward b/c I was the only one left in there at the end of the week!

Finally, I think I will be asking my Surgeon about follow upappointments and questioning him about whether my problems would have been caught earlier if I had been followed up earlier! Then I will go from there, I am much more up-front and proactive about my back and surgery today than when I was a meek and mild 15 year old LOL

Kat x

[felix999]

Kat-I am not in any organisation went to see a Doctor called Mr Lucas in the London Bridge hospital. He was very nice and just said the same as my prev surgeon. It woould be complicated to remove the pain via surgery so exercise first and see if that relieves it and that my spine is not moving but with a 60 degree curve any movement to be is signicant that is why I am so paranoid about it. But he says he doesnt expect it to move only marginally over the next 40 years. So best just to keep getting it xrayed every few years and if I see even a slight movement then get something done. Wish I had a better correction and dint have to worry about these things .

The link would be great.

Thanks
Amanda