what is the chance of developing abnormal kyphosis after surgery?

[titaniumed]

Amanda

I was ready to move to San Francisco if necessary. This was Before Dr Menmuir came to Reno.... Before he moved here, there were no scoli specialists here. My old non-scoli ortho suggested that I head down to San Francisco. (UCSF) after I was in trouble. That was in 2002.

Around 2005, I called down cause I was hurting big time, and he retired(my old non-scoli ortho) and the girl told me that they had a new scoli specialist and that was when I first met Dr Menmuir.

My thoughts? The first thing that needs to be addressed is insurance. When you leave a state, things can get complicated, and some insurances will only cover 50%. My tab was 765K.

In my case, I would have moved to California, obtained insurance, then started planning. It would have been temporary, but then again, I probably would have stayed in San Francisco, its such a great city. I've known about Dr Bradford and his group for a long time...

I had some complications, they happen. My pain was so bad, I just had to get it done, and prayed that nothing would happen. That’s all we can do sometimes. I was also talking to Dr Shelokov before he passed.

I knew Dr Menmuir was good. It took several meetings, there were no guarantees, he was straight up and right on with everything he has ever said to me. He wanted me "online" studying scoliosis. There are so many things to know, and Surgeons are very busy people....

My PT was walking. I did PT on my broken shoulder 8 months after my scoli surgeries. I wanted to wait till my spine fused at 6 months and took it very easy till that time. The nurses and PT girl came out to my house since I was tired of the hospital, and I didn’t want to do a rehab hospital. I'm sure the insurance company was pleased since I saved them quite a chunk, and I didn’t want to use any more available insurance monies in case I needed more. I was having gall issues, that I thought was an incisional hernia at the time.

I agree with you. It would be best to be close to your surgeon and a decent hospital. Some travel, and travel great distance, but its easier when everything is 15 minutes away. In San Fran, if you need a liver, they make you move. It happened to a friend of mine. His tab was $2million.

You are doing a great job at being active and researching scoliosis... I will give you a 10.

If any of you get CTs, get burned copies of your digitals.They are your property! I have had Doctors lose my records years ago!!!!!!!!!! You don’t want to be doing these all the time. This goes for x-rays also. Date them.
Ed

[Back-out]

Thanks for the wealth of good advice, Ed. I hadn't been aware your thoughts on moving predated finding Dr. Menmuir. You sure " rose to the occasion" of your wipe-out surgery, and your being here to tell the tale really means something.

You accepted the maximum challenge, and got run over by that surgery truck prior to being kind of reincarnated. But in being effectively taken apart and reassembled, you did it RIGHT. No point in doing it half way, anyhow - as long as one can physically and mentally withstand it.

Makes me wonder about how one can arrive at a meeting of the minds in planning what's to be done, though. Your surgeon didn't want to leave a stone (as in vertebra) unturned in giving you the best chance for a complete recovery. For YOUR post-surgical goals.

And he knew that's what suited you too. No stop-gap measures. Others seem to prefer to take fewer risks - as they see it, anyhow. Hence, they fuse less. I'm sure your going into it in tip top physical shape (being active) figured heavily in what he thought you could tolerate too. "Tip top" except for that little matter of living in agony, that is!

This is why I asked in a recent thread, about the meaning of "conservative" in this surgery. Seems that less surgery is tantamount to conservative in the lingo, but in another way it's the opposite. In terms of the target concern of this thread, for example.

I appreciate your giving me a 10 for effort in research. The problem is, if one doesn't somehow engage the surgeon's interest, it's hard-impossible to get answers. Your advice abt emails (ways back) was good. Will do.

Starting to panic just a bit. OK, more than a bit...But having survivors (and thrivers) like you around, helps. Thanks!

[Back-out]

To addL

***
Comments on saving images helps too - practical advice is important. A surgeon performing very specialized surgery on me ten years ago, didn't arrange for his records to be saved after he retired - not more than the legally mandated 7 years. Now I don't know what rib was harvested for a graft (among much else - I'm sure they can figure out which rib is missing)! Yep, record-keeping matters!

And, very true about insurance. Misunderstanding abt mine, I think . I can go anywhere with my BCBS plan (as it stands now. BRRR). Hence, time pressure. More time to process all this would have helped. A certain amount of incubation....I've only had since March. Blech.

[titaniumed]

Ribs grow back, and they grow back quickly! This is why scolis need to be extra careful in the first few months right after surgery. Bone grows fast!

X-rays will show breaks, fractures of the past.... it’s a permanent record.

Scoliosis surgical patients need to plan on doing nothing for a few months, especially if the surgery is serious. No laundry, no step stools, no nothing. Just full concentration on healing with a positive attitude.

There are no studies on "rate of fusion" or "integrety of fusion" at specific times. I have read about fusion studies in cadavers, but it seems to make sense that fusion "healing rates" are most critical immediately after surgery. Osteoblasts, in high gear!

My recovery involved a non-linear amount of physical effort....Walking carefully, with slow increases of physical activity. No bending, no lifting, for months... My tests of endurance came later, I was in no hurry, you only have one shot at this.

I need to add "take it easy" to my signature. Also, "Access down low, from the front is best" for comedic effect....
Ed

[Susie*Bee]

Love it, Ed-- the new line...

[Back-out]

Really excellent advice, Ed. We need you to sock it to us. Too many women are afraid of appearing to nit-pick or second guess others, but in this area it's doing no one a favor to come on too soft. People won't be as cautious as they need to be.

I get the feeling reading many posts that moms especially, tend to do too much early on, afraid of being seen as wimps or imposing on others - not fulfilling their responsibilities (and making others mad at them).

Maybe it would across better if the emphasis were laid on how much of a negative effect it will have on our kids/spouses down the road if we DON'T take care of ourselves now. These are the same kids who will have the burden of our care later on if we're invalided (if they accept it, that is).

It couldn't be more serious. And education is too much of a do it yourself proposition IMO. Women need to spare themselves at first. Period. What's the cost of housekeeping help compared with nursing care later on? And to insure the success of a 1/2 million - 3/4 million $ surgery (not even putting a price on our pain and basic family/s.other care at first)?

Worse still if we're creating the need for even more surgery later on.

Paying for help emptying dishwashers and doing laundry for a few months are NOTHING up against this kind of a potential loss. It's worth using disposables and buying frozen food - WITHOUT GUILT!

One of the problems are it's an "invisible handicap". We should wear our X-rays on our backs so people would see what we're up against. And something else to remind ourSELVES of what it's worth.

[Susie*Bee]

One of the problems are it's an "invisible handicap". We should wear our X-rays on our backs so people would see what we're up against. And something else to remind ourSELVES of what it's worth.

So true! And there are a few of us that posted our "before and after's" at work so that others could see. One look at the lateral x-rays with those wicked looking screws is enough for most people to back off and give you a little lee-way or understanding if you're having an achey day... My curves weren't bad, but when I look at my digital x-rays and how my upper back/neck was out of line, (and that's not even where my major curve was) and on down... and my lateral listhesis at L3/L4, no wonder by the end of each day I was miserable.

I will say a hearty "AMEN" to Ed's "do nothing" except heal for awhile. Walk, heal, walk, heal, etc. Your body needs all its energy to heal. The walking helps boost it into that mode. You have to eat right. Ed posted his award winning recipe for some super duper protein shakes awhile back. (No, I never tried them, but I'm sure they're great.) And you have to do those very easy beginning PT exercises they will probably start you on in the hospital or right after you get home. (Really basic PT). No lifting, no housework, no twisting, no bending. But try not to do any of the "work" that you think you should do. The world will go on spinning without your house being clean.

[Confusedmom]

"Access down low, from the front is best"

All comedy aside, do you really believe this is true, Ed? My primary doctor has recommended this A/P procedure to me, but 3 others (including Bridwell in St. Louis) recommend posterior only. Someone else posted recently on the site that Bridwell & Lenke are getting away from anterior procedures except when absolutely necessary. Love to hear more on this.

Evelyn

[LindaRacine]

All comedy aside, do you really believe this is true, Ed? My primary doctor has recommended this A/P procedure to me, but 3 others (including Bridwell in St. Louis) recommend posterior only. Someone else posted recently on the site that Bridwell & Lenke are getting away from anterior procedures except when absolutely necessary. Love to hear more on this.

Evelyn

Evelyn....

I think you may have misunderstood about Bridwell and Lenke. They probably do little or no big open anterior procedures, but they probably do a lot of minimally invasive anterior procedures.

Regards,
Linda

[Back-out]

Tit-Ed:

seems to make sense that fusion "healing rates" are most critical immediately after surgery. Osteoblasts, in high gear!

And ESPECIALLY if we've just been given a boost of BMP!! No, we don't personally pay for it for the most part, but someone shelled out the ~ $60K for that BMP. Why waste it?

My recovery involved a non-linear amount of physical effort....Walking carefully, with slow increases of physical activity. No bending, no lifting, for months... My tests of endurance came later, I was in no hurry, you only have one shot at this.

Just wanted to repeat Ed's invaluable words.
Ladies, your families need you to be there for yourselves now or you can't be there for them, later.

Stats show most Americans don't plan for the future, especially LT care. Extrapolating our spinal problems to the future, says our group are running much more risk than average of needing extensive care later. (Insurance companies know this. Just try to get private LT care insurance! A recent debacle).

But we can reduce that risk by our choices. It's NOT just the luck of the draw.

Don't push yourselves or take chances now. It's not worth the risk for us AND OUR FAMILIES. The cost: benefit ratio massively favors investing in aids to make life easier for us - especially in those first critical months after surgery.

Why else did God invent blenders, microwaves, paper plates (styrofoam is going too far ) ? Not much is costlier than labor. But if it comes down to it, home-maker services now are cheaper than nursing home care later. "Later" is not that far off. Your kids will thank you if you can remain independent.

The main thing we need to salvage is US.
The focus MUST be on healing and safety - and that curve is steepest at first.

[Doodles]

Just for the record mine was all posterior with Dr. Lenke and I got the impression that's pretty much the way he does it now--reach around technique. Janet

[leahdragonfly]

Tell me, Ed

This is an interesting thread and it has me wondering----so what exactly do you DO all day long for months after surgery if you shouldn't be doing ANYTHING around the house? I know you rest in bed a lot for awhile, and I know you walk, and I know personal care will be slow and pain-staking at first. But how are you spending the rest of your time (please tell me, Ed!). Reading, watching TV, something else? I am a very active person (and busy with an 8 and 5 y/o), and it sounds like I need to plan for the post-op period.

I am planning to go back to work on careful, limited duty at 3-4 months post-op, if possible.

[LindaRacine]

Gayle...

I think that's the toughest part of the whole process. I found it to be far more boring than at any other time in my life. I had grand plans of reading tons of books and watching tons of movies. What I found was that I couldn't concentrate of much of anything.

Regards,
Linda

[golfnut]

Gayle,
I, too, am very active physically and socially and have thought about how bored I will be between taking walks & resting. Since it will be January, the weather outside can be "iffy" for long walks, so laps in our small house will be a little dull. I will hope for a mild winter so I can get outside. I thought about bringing home preparations from school from my former colleagues just to be useful and pass the time, but that would mainly involve having my head looking downward for cutting, printing, coloring, etc. Now that I'm worrying about developing a kyphosis above the fusion, I may not volunteer for the teachers! Reading and using the computer also have my head looking downward.

[Back-out]

Gayle...

I think that's the toughest part of the whole process. I found it to be far more boring than at any other time in my life. I had grand plans of reading tons of books and watching tons of movies. What I found was that I couldn't concentrate of much of anything.

Regards,
Linda

Linda,

How long did this period of poor concentration last and what do you attribute it to?

Thanks!