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Irina
06-15-2012, 11:29 AM
I've noticed that a lot of people have their surgeries in 60s and wonder if they were offered a surgery when they were yonger, but for some reason decided to wait. If this sounds like you, can you please share why you decided to wait until later in life? Was if fear, economic reasons etc? Do you regret not having it done earlier?

I am 44 and scared of this surgery to death… I know that a lot of people will say it’s better to do it sooner than later, but still want to understand why so many decide to wait until they are in their 50s – 60s to have it done

Irina.

Doreen1
06-15-2012, 01:50 PM
Hi Irina,

I, too, am 44 and just want to share that because my scoli deteriorated at such a fast clip (lost 4 inches of height last year, curves progressing 6 degrees every year) that I couldn't afford to wait. In my case, there was no need to wait for surgery.

Don't let fear paralyze you. Some things to consider are how severe are your curve(s), how aggressive are your curves and how much pain are you in?

Curious to see others respond to your questions.

Warmly,
Doreen

Irina
06-15-2012, 02:55 PM
I don't know my cob angle, but my curve is huge. Last time it was measured in my teens and I was told that it won't progress, but it does. I can see my back, rib hump and an ugly hip sticking out. My ribs are sitting on my pelvis and it's very uncomfortable. I have some lower back pain, but it's tolerable and doesn't affect me much. Sometimes I wish I had more pain and it would give me a kick to do something... I worry all the time of where I would be in 10-20 years if the curve keeps progressing. I lost 3 inches since my teen years - part of it could be a normal aging, but 44 is not that old to lose 3 inches, right?

I finally scheduled an appointment with an orthopedic surgeon and plan to get several other opinions. Just scheduling these appointments is so frightening... I remember Linda saying somewhere that an average age of patients coming to UCSF is about 60 years and wonder why? Why did they wait for so long?

JenniferG
06-15-2012, 03:21 PM
Hi Irina,

I was just short of 58 when I had mine. I was offered surgery at about 13 and refused it. My parents didn't object to my decision and allowed me to have my way, especially when our GP confirmed it as a fairly barbaric surgery at that time. We adopted the "wait and see" approach which, for me, meant forget I ever had Scoliosis. I had no pain until my late 40s and it started gradually, increasing through my 50s. I successfully ignored my scoliosis and never gave it a thought until then. But gradually I started to notice my deteriorating shape and the constant low back pain when standing and it was getting harder to ignore.

When first told I needed surgery within 12 months, I freaked out. I'd never had any kind of surgery before, was nervous of anything "medical" and had avoided doctors as much as possible. But I knew I needed surgery if I was to have any kind of life at all. My curve was progressing. Where would it end up? So I scheduled surgery for a date 6 weeks down the track then cancelled it. I needed more time to get my head around it. I found this forum and talking about it, reading about it, asking questions and having them answered by people who'd actually had the surgery, all helped enormously. As the question marks in my head diminished, I started to think, I can do this "thing." So I rescheduled the surgery and set about getting as fit and healthy as I could, in other words, take some control for myself, do what I could for myself, not leave it to fate entirely. As I got fitter, I got braver. By the time my surgery date arrived, I was barely even nervous. I just wanted it over and done with. I was sick of thinking about it and wanted to get on the road to recovery. That's how I thought about it, not so much the surgery, but the recovery, getting better, getting back to a normal, better life. Surgery is just one day. After that, you just work your way back to normality, only a better normality than before. Getting to that surgery date is the hard part, in my opinion.

You can do this. Necessity will tell you that. But you can make it easier on yourself if you get all your questions answered, can talk about it to those you care about, organise whatever help you need, and as each box is ticked, you will feel braver and more positive about it. If your pain allows, get as fit as you can, it was the best thing I did for myself. It helps in every way, most importantly, makes you feel positive about the surgery, as opposed to negative. If getting fit isn't possible, you can still eat healthily, and get your weight to a healthy place. It will give you a sense of control and confidence in yourself. All these things help.

And before you know it, your surgery will be over and you'll be heading towards a better life and a better future. Good luck!

golfnut
06-15-2012, 08:51 PM
My story is similar to Jennifer's. I found out I had scoliosis in high school and it was monitored for several years. It was determined that it probably wouldn't get worse, so I tried to totally forget the word "scoliosis". As I reached my 50's, standing for any length of time caused me discomfort, but I could do most anything else I wanted with little or no pain. I think I started looking more "crooked" in my 50's and my rib hump became more predominant causing me to avoid tight fitting clothing and to be self conscious when walking in front of people or bending over to play golf. I was 60 when I had surgery and can't say that I'm sorry I didn't have the surgery sooner, because I was not in pain before surgery and have had a smooth recovery. Fortunately, I was able to be in good physical shape for surgery, but many on the forum have said that pain prevented them from being able to exercise. I would think that if one is in pain and has a curve that is progressing that he/she will have an easier time with recovery and get a better correction with the advantage of being younger.

debbei
06-15-2012, 09:02 PM
I was scared to death as the next guy, but I pushed myself to go through with the surgery. I was 46 and I'm glad I did it. I think I had a pretty good recovery, compared to others that I've seen here on this forum. In my case, I knew that if I waited I would continue to progress and I was already 66 degrees on each curve.

loves to skate
06-15-2012, 09:03 PM
I don't know my cob angle, but my curve is huge. Last time it was measured in my teens and I was told that it won't progress, but it does. I can see my back, rib hump and an ugly hip sticking out. My ribs are sitting on my pelvis and it's very uncomfortable. I have some lower back pain, but it's tolerable and doesn't affect me much. Sometimes I wish I had more pain and it would give me a kick to do something... I worry all the time of where I would be in 10-20 years if the curve keeps progressing. I lost 3 inches since my teen years - part of it could be a normal aging, but 44 is not that old to lose 3 inches, right?

I finally scheduled an appointment with an orthopedic surgeon and plan to get several other opinions. Just scheduling these appointments is so frightening... I remember Linda saying somewhere that an average age of patients coming to UCSF is about 60 years and wonder why? Why did they wait for so long?

A lot of those 60 year olds more than likely have the denovo type scoliosis that develops from degenerative disc disease. I was never diagnosed earlier or I would certainly have had surgery at an earlier age. When you are older, it is much harder to get any correction, much less a good correction because of flexibility and bone density.
Sally

Irina
06-16-2012, 12:20 AM
I am so grateful to all of you for sharing your stories. It really helps to hear words of encouragement from someone who’s done it. Thank you!

susancook
06-16-2012, 04:29 AM
Irina: I am another who is "late onset degenerative scoliosis", that is, mine wasn't discovered until I was 65 [this last year!]. Scoliosis comes like ice cream in all flavors: the very young, the teenagers, those young adults and then all ages of adults to the very elderly.

My suggestion is: get lots of information and talk to others that have had the surgery. This forum is a great resource for information. I don't know where you live or where you plan to have your surgery, but have a surgeon that does a lot of adults and someone that you feel confident with. Get a couple of opinions. I would recommend one of the major centers that does spine surgeries.

Why do people have surgery? That varies with a couple of factors including age, disability, curve, and pain level. There is no "formula", each person is evaluated individually. That is why this blog sometimes gets confusing because older folks like me can have a lot of pain with a 36 degree curve and younger [like a 45 year old] adult with a 60 * curve has very little pain. Scoliosis is not an equal opportunity condition.

And, we are all afraid, but we talk about it. You are not alone!!!!!!

Good luck. Keep in touch. Susan

Confusedmom
06-16-2012, 05:50 PM
Irina,

You've asked a really good question, and this is a very interesting thread.

I had surgery a few months ago at age 40 even though I was not in much pain. I had been diagnosed when I was 11, wore a brace in middle school, got good correction and never dreamed I would have surgery. I got my curve checked a couple of times, when I was 22 it was 33 degrees. When I was 30 it was 55 degrees. That was the first time someone proposed surgery for me. I wanted to have my kids first and wait until they were old enough to have the surgery. So by this spring my curve was 85 degrees and I was looking pretty deformed. I had a big rib hump on the right and perpetual muffin top on that side. This forum and my local surgeon led me to a doctor I trusted. I still was unconvinced because of all the risks. However, I found out I have osteopenia, so I didn't think I should wait too long. Plus, my curve was increasing rapidly, so Dr. Lenke advised against waiting. So far I am generally pleased with the surgery, though I am still recovering. I definitely look a lot better. My biggest question at this point regarding having surgery at age 40 is -- how will my back hold up over time? Will I need additional surgeries? And will the fusion put undue stress on my hips, neck and knees as I age? In the end I had to make the leap of faith that my overall health would be better with the fusion than without it. Good luck with your decision! You are thinking things through well.

Best,
Evelyn

Irina
06-16-2012, 05:51 PM
One more question. When you talked with doctors, did they tell you ‘yes, you need a surgery’ or at least gave a clear indication that a surgery is advisable? Or would they just lay down all the facts and leave the decision completely up to you? It would be easier for me to hear the doctor say ‘yes, you need it' or 'no, you don’t need it’ instead of being lost somewhere in the woods.

Back in 2010 I had X-rays taken, but then chickened out and didn’t go to any surgeon. Now these x-rays would come handy because they can measure the progression over two years.

JenniferG
06-16-2012, 08:12 PM
My surgeon told me my scoliosis would never kill me. (That startled me because I had never thought of it as something that might.) He then gave me all the facts. I asked his opinion, should I have the surgery? He said if I was his wife, he'd say yes. I asked how soon. He said preferably within 12 months. I had the surgery 9 months later, having cancelled an earlier date.

Confusedmom
06-16-2012, 09:57 PM
Six surgeons told me I should "consider" surgery or that the "recommended" surgery in the next couple of years. One told me to wait a few years until my curve got in the 70s. I signed up when it hit the 80s.

LindaRacine
06-16-2012, 11:32 PM
Hi...

Every surgeon has their own philosophy. If you went to 5 surgeons, I suspect you'd get 5 different opinions ranging from "you're not ready for surgery" to "you should have surgery now". They're all just opinions, and none of them can tell you what your outcome will be. My advice is to choose surgery when you know that the risk/reward ratio is right. Patients who do not have a lot of pain or disability often have long recoveries and poor outcomes because their motivation is different than someone who has severe pain and loss of function. I don't know about everyone else, but I really knew that it was time for me to have surgery. I had leg pain that had escalated to a point where it severely impacted my function. Everything had to be planned so that I never had to be upright for more than 4-5 minutes at a time.

Regards,
Linda

susancook
06-17-2012, 04:29 AM
Hi...

Every surgeon has their own philosophy. If you went to 5 surgeons, I suspect you'd get 5 different opinions ranging from "you're not ready for surgery" to "you should have surgery now". They're all just opinions, and none of them can tell you what your outcome will be. My advice is to choose surgery when you know that the risk/reward ratio is right. Patients who do not have a lot of pain or disability often have long recoveries and poor outcomes because their motivation is different than someone who has severe pain and loss of function. I don't know about everyone else, but I really knew that it was time for me to have surgery. I had leg pain that had escalated to a point where it severely impacted my function. Everything had to be planned so that I never had to be upright for more than 4-5 minutes at a time.

Regards,
Linda

Linda: What if you're in just moderate pain but the surgeon says that your curve is progressing and he is concerned and recommends surgery. That seems to me to be problematic and I worry if I get into that zone of having to make a decision. I agree that the decision for me would be apparent if my quality of life was compromised and I had to limit my activities because of pain. So, you go to another surgeon and that one says, "you don't need surgery now, you can wait". Do you pick the one that you like best? Go to another surgeon? Susan

LindaRacine
06-17-2012, 11:51 AM
Hi Susan...

I think it would probably depend on the speed of progression. The vast majority of adults (at least those over 40) have stable thoracic curves. It's almost always the lumbar curve that increases. While lumbar curves are usually a lot more painful than thoracic curves, there aren't the immediate concerns of lung and heart involvement. Large thoracic curves that are progressing are a different concern.

I'm guessing that most people pick the surgeon who says what they want to hear. If you know it's time for surgery, you can either convince the surgeon who is recommending that you wait, or go with the surgeon who wants to do surgery now. I don't think there's any right answer. Most conservative surgeons can probably be convinced to do surgery, if they think you'll have a good outcome. So, I guess I'm saying that the recommendation of if/when to have surgery should probably not be given a lot of weight when one is choosing a surgeon.

Regards,
Linda

Irina
06-17-2012, 01:35 PM
Hi Linda,

Can a surgeon predict where I would be in 10-20 years pain wise if I don’t have a surgery now, or there is no way to tell? I have one long large curve, must be thoracolumbar, and I would know the exact measurements in a week…

I think that pain is so subjective. I know that I have very high pain level tolerance (been told by several doctors) and may be something that is nothing for me could be a significant pain for someone else. We just came from NYC, and were walking all days long. My back hurted quite a bit, but I just pushed through the pain and when the pain got too strong, I would tell my husband that it’s time to go back to the hotel. I thought: “It’s is not too bad. Not too many people would be able to walk as much as I do”. On the other hand, some days it’s even painful for me to bend over the sink to brush my teeth, and then I just squat and keep going… Several years ago I could clean our whole house at once in 2-3 hours and now I can only handle half-an-hour at a time. Of course, I can hire a cleaning lady, but that would mean to mentally accept my declining physical abilities, so I just plan my schedule around half-an-hour cleaning increments...

What bothers me the most is the discomfort from rib cage rubbing against my pelvic bone. I feel it when I stand, walk or sit. Walking is becoming uncomfortable because of this. I didn’t have this issue before and it has escalated in the past year. Even when I bend over the sink to brush my teeth, I feel ribs touching and rubbing against my hips and it’s a very odd a disturbing feeling that makes me think – would it cause a lot of pain in a few years?

Oh, that was a long post, but it feels so good to bounce my thought with someone who understands…

LindaRacine
06-17-2012, 08:06 PM
Hi Irina...

No one can predict if/when you'll have pain. We see patients relatively often who have huge curves but relatively little pain. If you have pain now, and the pain is no longer episodic (that is, the pain goes away for days, weeks, or months at a time), you could reasonably predict that the pain is not likely to ever get better than it is now. The two most common things that seem to send patients to surgery faster than other things are the ribs on pelvis pain and radicular leg pain. Most people can deal with back pain by reducing function, but leg pain can be particularly disabling.

Regards,
Linda

susancook
06-17-2012, 09:21 PM
Hi Susan...

I think it would probably depend on the speed of progression. The vast majority of adults (at least those over 40) have stable thoracic curves. It's almost always the lumbar curve that increases. While lumbar curves are usually a lot more painful than thoracic curves, there aren't the immediate concerns of lung and heart involvement. Large thoracic curves that are progressing are a different concern.

I'm guessing that most people pick the surgeon who says what they want to hear. If you know it's time for surgery, you can either convince the surgeon who is recommending that you wait, or go with the surgeon who wants to do surgery now. I don't think there's any right answer. Most conservative surgeons can probably be convinced to do surgery, if they think you'll have a good outcome. So, I guess I'm saying that the recommendation of if/when to have surgery should probably not be given a lot of weight when one is choosing a surgeon.

Regards,
Linda

Thanks, Linda. I continue to struggle w/ the question of whether or not to have surgery. Some evenings when I am in severe pain, if Dr. Hart dropped by the house, I'd say, start cutting right now. The next morning when I am in less pain, the decision is less clear. It is interesting that you say that the thoracic curve in us older folks generally doesn't progress, and I hope that's true...but it is interesting that just looking in the mirror that I am listing to the right much more recently, that is, my R shoulder is dropping down more than it did previously. I agree w/ you that you pick the surgeon who says what you want to hear, but right now, I'm not sure what I want to hear. The Pain Management MD in the clinic at OHSU says, "I think that you should consider surgery". I do not consider my level of pain to be too limiting. It slows me up, and I cannot stand too long to cook dinner but I am otherwise fairly active. I see Dr. Hart again next Jan 2013 for another set of xrays and a consult, and by then who knows how I will feel? Dr Hart just sent me a chapter written by Dr. Hu on Adult Scoliosis Surgery to read. Thanks again for your information and support. Susan

Irina
06-17-2012, 11:24 PM
I am a bit confused with Linda’s statement: “Patients who do not have a lot of pain or disability often have long recoveries and poor outcomes because their motivation is different than someone who has severe pain and loss of function.”

May be they are not happy because their expectations are unrealistic? Why would outcome of the surgery and recovery time be dependent on pre-surgical pain level? If I get well informed about recovery process, risks involved and set reasonable expectations, why would my outcome be less favorable than someone who is in severe pain?

LindaRacine
06-17-2012, 11:59 PM
I am a bit confused with Linda’s statement: “Patients who do not have a lot of pain or disability often have long recoveries and poor outcomes because their motivation is different than someone who has severe pain and loss of function.”

May be they are not happy because their expectations are unrealistic? Why would outcome of the surgery and recovery time be dependent on pre-surgical pain level? If I get well informed about recovery process, risks involved and set reasonable expectations, why would my outcome be less favorable than someone who is in severe pain?

Hi Irina...

I think most of it is expectations. It's one thing to hear a surgeon say that you might be worse after surgery, and quite another to think it will happen to you. People who go into surgery with a lot of pain are usually happy after surgery, when their pain level is lessened. People who go into surgery with relatively little pain may find themselves very unhappy when they realize they have long-term pain. These surgeries are not benign. Even if you don't have back or leg pain after surgery, you might have one of many potential "incidental" issues like minor nerve damage, trochanteric bursitis, lymphedema, a slight lean forward, or to one side, degeneration above or below the fusion, the loss of flexibility, etc. We all think those are a small price to pay, but it can be a different story to actually live with them every day. I am not trying to scare anyone away from their decision to have surgery, but I think talking about these things helps to manage expectations.

Regards,
Linda

jrnyc
06-18-2012, 12:39 AM
to me, it seems pretty clear that if someone is not in pain before surgery,
pain after surgery can be expected to be hard to accept and tolerate...especially if the
pain is ongoing after reasonable post surgery healing...
it can lead to regret over having had the surgery...as Linda said, people in severe pain before
surgery may be more accepting of pain after healing if/when tht pain is still less than the pain
they had before...
of course...for some of us...we are reducing functioning, and reducing, and reducing...until
there is a great deal of limitation on what we can do....literally....
when that point comes....surgery can become a daily consideration....and even then, a tough
decision, depending partly on one's age...at least, that is how i see it....

jess

Irina
06-18-2012, 12:34 PM
Ok, then why do some people go ahead with a surgery mainly because of progression? If one is not in a lot of pain, but the curve keeps progressing, what's the future holds? Should you wait until the curve reaches 125 degress or more? Btw, what is the max degree possible and how does it feel to have something like that? Would it hurt a lot, put you in a wheel chair?

LindaRacine
06-18-2012, 11:31 PM
I've seen patients with curves up to about 150-160, and have seen photos of much worse. Actually, I once saw a man whose neck was so curved that his head was upside down, sitting on his shoulder. I'm guessing that his curve must have been well over 200 degrees. I have no idea if surgery was even an option for him. Hard to know what it feels like, but I've definitely seen a few patients with 150 degree curves that are not painful. I think those are exceptions for the most part however. Irina... there are no rules for when adults should have surgery, so don't try to make your decision based on other people. We're all different, and no one else can really tell what another person's motivations might be.

--Linda

titaniumed
06-19-2012, 01:14 AM
Irina

I was a candidate in 1975 and waited 34 years. I’m a skier....

If I could roll back the hands of time and do it over again, I would have my surgery at age 40. The pain I suffered through from age 41 through 49 was not worth it. When you cannot sit down due to major sciatica, and have to buy an RV for transport, that’s a signal. My pain was out of control at the end.

It is scary....as most things in life are when you don’t know what to expect. If you have never been under, or a first timer for surgery it can be very freaky. After my scoli surgeries, I walked in to my shoulder re-build and cholecystectomy without any fear at all. My laser lithotripsy scared me the most. Plumbing......its tricky stuff for us guys.

Like Linda has mentioned, there are people with some incredibly huge curves out there. They do have the ability to repair 180 degree paperclips. Amazing stuff......I saw this kid on the research channel with one and after they fixed him, he commented, “I’m in heaven”. That’s all he could say.

Be sure to let us know what your Cobb’s are when you find out.
Ed

Pooka1
06-19-2012, 05:45 AM
Irina... there are no rules for when adults should have surgery

Yes that that makes it very different from kids. For my first kid, I was told she needed surgery and that surgeon was handing her off to another surgeon to do it. Period. Boom. Second kid, same... you need surgery and we need to schedule it. Period. Boom. Maybe the legality of the parent/guardian relationship kicks in and the surgeon becomes a player making the bar is set very high for following best medical advice.

In contrast, many if not most adults seem to always be in a grey area. Seems so frustrating. I guess if you get to be an adult, your curve didn't kill you yet so there is usually some room. My kids would not have gotten that far.

Irina
06-19-2012, 11:31 AM
My kids would not have gotten that far.

Oh, I wish I had this option as a kid. I am originally from Ukraine and scoliosis surgery was not an option there and has never been offered.

Pooka1
06-19-2012, 11:46 AM
Oh, I wish I had this option as a kid. I am originally from Ukraine and scoliosis surgery was not an option there and has never been offered.

Yes but you are still alive. I am not sure my kids would be if they weren't fused.

jrnyc
06-19-2012, 02:29 PM
i am trying to imagine a 150 degree curve that doesn't hurt....
i cannot wrap my head around it...
IF it were upper, it sounds like it would interfere with heart and lung function...
IF it were lower, it sounds like it would prevent walking and hurt like hell
my 70 degree lumbar curve hurts worse the bigger it gets, and it sends the pain
elsewhere in lower body the bigger it gets...compared to that, my upper 42 degree curve
is almost nothing....just causes muscle spasms....

double 70.....wow!!!! i am not able to imagine it...
maybe it is that i don't want to...

jess

Karen Ocker
06-23-2012, 12:44 PM
I did not have very much pain requiring more than Aleve however I would wake up at night with a throbbing lumbar pain requiring a little pillow under one buttock. That would give relief. My back got tired /achy after being on my feet all day. I did all I could to stay fit.

Several things worried me based on my medical background:
My heart was rotated from the scoliosis. Whenever I had an EKG-because the technicians placed the EKG leads in the "normal" places- my EKG readings were alarming. For example "evidence of infarction" or "conduction defects". Once I suggested the technicians pay close attention to where my heart really was my readings were normal.

My stomach lay on its side (from the thoracic curve) allowing acid and bile to scar my lower esphagus - this caused a stricture requiring dilitation.

I was getting more and more easily winded- I lost 30% lung capacity (never smoked). That was the scariest.

A couple of co-workers(physicians) mentioned my worsened appearance-which of course meant progression.

So if pain were the only criteria to go by I could have lasted a little longer. Wished I had the surgery done even sooner.

Reasonable speaking, there is no way large curves, anywhere in the spine, do not impact internal organs in some way. Even making a diagnosis by abdominal ultrasound, in my case, was difficult. The radiologist could not visualize my pancreas well because it was hiding behind a deformed rib- same problem with my spleen and gallbladder.

It is magical thinking to believe a progressing curve will stop or stabilize on its own and that the resulting pain will somehow get better. Life is too short to suffer for no reason if the risk/benefit is favorable for surgery.
I still have no pain 10 years after revision. I go to the gym and do resistance training as well as aerobic exercise. I just turned 70.

rohrer01
06-23-2012, 02:44 PM
My 46* upper left thoracic curve hurts like the dickens. It's not the curve itself so much, but the fact that it is SO high up that it interferes with my neck and all the muscles in my neck and left shoulder especially. I literally am in pain with my neck ALL of the time without strong meds. It is worse since I saw my surgeon over two years ago. It's not going away or getting better this time. I've had episodes last from a couple weeks to a couple of years and anywhere inbetween. This one isn't letting go. I'm 43 and don't quite know what to do either. I'm on a couple different muscle relaxants, narcotics, and get trigger point injections and Botox. Nothing seems to give relief. My upper trapezius is like a rock no matter what. My left scalene is now popping out and very tender. It looks like I have a string under my skin from my upper neck to my collar bone. Two years ago, my surgeon thought surgery would make me worse. I wish I knew for sure. If it would make me feel better, I'd jump on it. But with your doctor saying, "If I operate, I'm gonna hurt you." What do you do? I say if he thinks he's going to hurt me, he's probably right. It's just how long do I wait in this pain? He doesn't like me on narcotics, but at this point, I really can't function without them. I could "live" without them, but I'd be in bed 24/7. As it is, I spend about half the day in bed just to get relief from the strain on my neck. It's frustrating and for the first time in my life I'll admit it's depressing, too. I can't imagine someone with their head upside down NOT hurting!

Irina
06-23-2012, 08:16 PM
Hi roher01,

This must be so frustrating… I don’t know what to say. I remember reading somewhere that you don’t really have many options with your insurance and suggestion to go to another doctor, won’t help, right? Just sending a virtual hug…

titaniumed
06-24-2012, 10:44 AM
Rohrer

Having a Doctor say, “I’m going to hurt you” doesn’t install confidence that’s for sure. But it doesn’t mean that there isn’t a surgeon out there that has done these high curves. You have to find the right surgeon. The surgeon has to be comfortable with the procedure.....

In 1974, Nancy had Dr Moe do a C6-T6 on her cervicothoracic curve......that’s a while ago. They have done these high surgeries before.
http://www.tcspine.com/about-us/dr-john-h-moe-exhibit/cupid’s-surgery

It would be great if Nancy posted.....

I never thought to myself “how long do I have to wait in pain?”...... (it was many years). I always thought that someday, I would have my day.....scared, yes, but hanging in there all along. Try this, try that, do anything to hang in there. I never knew if and when I would go down to UCSF. Dr Menmuir finally showed up in little old Reno.....a good thing and just in time, cause I was shot and couldn’t wait much longer.

Some out there seem to hook up right away. Many teens get dxd’d and are operated on in a few months. They don’t know what its like to live decades in pain....Adult scoli’s have to be tough I guess.

Never give up hope because a surgeon makes a statement. You move on till you find the right surgeon.
Ed

Doreen1
06-24-2012, 02:46 PM
Rohrer

Having a Doctor say, “I’m going to hurt you” doesn’t install confidence that’s for sure. But it doesn’t mean that there isn’t a surgeon out there that has done these high curves. You have to find the right surgeon. The surgeon has to be comfortable with the procedure.....

In 1974, Nancy had Dr Moe do a C6-T6 on her cervicothoracic curve......that’s a while ago. They have done these high surgeries before.
http://www.tcspine.com/about-us/dr-john-h-moe-exhibit/cupid’s-surgery

It would be great if Nancy posted.....

I never thought to myself “how long do I have to wait in pain?”...... (it was many years). I always thought that someday, I would have my day.....scared, yes, but hanging in there all along. Try this, try that, do anything to hang in there. I never knew if and when I would go down to UCSF. Dr Menmuir finally showed up in little old Reno.....a good thing and just in time, cause I was shot and couldn’t wait much longer.

Some out there seem to hook up right away. Many teens get dxd’d and are operated on in a few months. They don’t know what its like to live decades in pain....Adult scoli’s have to be tough I guess.

Never give up hope because a surgeon makes a statement. You move on till you find the right surgeon.
Ed

Ed,

Didn't you post somewhere recently how someone was able to have scoli surgery while not having insurance?

Warmly,
Doreen

JenniferG
06-24-2012, 03:00 PM
It's so worrying that insurance companies can change the course of your lives to the extent of preventing finding the right surgeon to get you out of pain. Since when did insurance companies have so much power? I dread that we're going the same way here.

titaniumed
06-24-2012, 04:19 PM
Doreen,

It was Pilar, done by Dr Pashman in LA. She had no insurance.

We shouldn’t be punished by insurance companies. We should be able to pick any surgeon because there might only be one person that is comfortable with a specific procedure, and that surgeon might be a long distance trip. Insurance companies used to only pay 50% if you traveled....that would be $392,000 on my surgeries.

I was close to moving back to California as there were no scoli surgeons here in Reno 10 years ago. When I called and the girl mentioned that we have a new scoli surgeon, I went down for my 1st visit with Dr Menmuir in May 2005. He does have special training not only in scoliosis but also in the cervical area.....I highly recommend him. I dry walled and painted my whole garage in the last week. I would never dream of doing something like this before my surgeries. Painting overhead sitting on a ladder is not easy with scoliosis. Yes, I’ve been getting dirty. (LOL)

People that need special procedures by special surgeons should travel and not be stuck spinning their wheels in pain....It would also be nice if surgeons could travel the US and take care of people here. I know that there are unfortunate people in other countries, but priorities should be here at home......We cannot travel 100 miles to another state, but surgeons travel halfway around the world.

????????

Ed

rohrer01
06-24-2012, 05:35 PM
Thanks everyone for the advice. Unfortunately, with my experience it seems that the surgeon's are looking only at curve magnitude and not overall symptoms. Another thing that happens frequently is that I'm not in pain and have good range of motion during my exams (although my ROM is really reduced in my neck now). It's like the knock in your engine that suddenly quits when you take it to the mechanic. Go figure! Also, they always say I have an odd curve, but never take into consideration what the implications of that odd curve are. They just seem to focus on the Cobb angle. I'm stuck as far as who I can see. I hand picked Dr. Tribus when I had state insurance and I liked him because he seemed to understand my pain cycle. I had to fight with my husband's insurance company to continue to see him, only to find out that he is the one they send all of their referrals to anyway. Why the fight then? They made me see the head of neurosurgery. I was hoping to get a thorough second opinion with Dr. Hey, but his receptionist said he prayed about it and cancelled my appointment. He e-mailed me and said there were plenty of good doctors in my area, which is true. I tried to get a second opinion with Twin Cities Spine Center since I'd seen Dr. Perra there before. My insurance nixed that and wouldn't approve a second opinion out of network. That makes NO sense since there are no scoli docs in network. Even if they did approve it, they would go with the one that didn't want to do surgery. They don't want to pay.

Yes, insurance companies have that much power! My GP was frustrated with a particular insurance company that many of his elderly patients have. This company wouldn't pay a few dollars for a life-saving medication for one of his older ladies. She couldn't afford the med because of fixed income. They let her die. Insurance companies are in it for the $$$ and nothing else. They don't make any money on me, for sure. This probably isn't in my favor, but what am I to do? The docs are frustrated because they can't help me. I've tried just about everything. I'm getting written off as a nut-case. My scoli surgeon said I have a drug problem (my only problem is that I DON'T want to take drugs!), I had one psychologist call me a hypochondriac, my pain doc (after talking to the psychologist) called me a surgery seeker for wanting a second opinion, and now my GP said he thought I was getting satisfaction in the fact that no one could help me! What the heck? I'd have to be one sick puppy to put myself through all of the bologna that I've been through. I'm getting to the point where I HATE doctors. Just because they can't treat my condition doesn't make me mentally sick. I'm so frustrated.

The hypochondriac "diagnosis" came from the medical MMPI that I took because my pain doc wanted to do a surgery that I really didn't want. After about 9 months of thinking about it and not feeling that much better, except for the low back injection, I went back out of frustration to reconsider the procedure. I HAD to take the test. It's geared against women. They ask about female pain, which I have because of endometriosis, fibroids, adhesions, and internal varicose veins. They ask about our view toward men (no such questions were asked about male sexual function/pain/or view toward women). They ask about GI issues. I've had my gallbladder removed and have legit problems there, so I had to answer yes. They ask about headaches, which the nature of my scoli causes headaches. They ask about heart symptoms like palpitations, I have a tachy arrythmia so that was a yes. They ask about fainting, I have low blood pressure plus the beta blocker for my heart rythm lowers it even more, so that happens on occasion. So he said that my "hypochondria" was based on my answers to those questions. What?! Then he said, "What surprises me most is that you actually DO have pathology." I've been dealing with this garbage for the last two years. They forced me to see a pain psychologist for my "hypochondria" and if I didn't they could refuse to treat me. I've never posted this here before because, quite frankly it's embarrassing to be accused of those things when there are legitimate medical problems behind every question I answered. Why the heck are there medical questions on a "personality test" anyway?! So my insurance company uses this, I'm sure. Any doctor I see is biased before I ever see them, and even if they're not, I feel like they are and am not at ease. It's a mess. I feel like giving up, but I can't. I have to live and be functional. Sorry for the TMI and the rant. Some of you may think I'm psycho now, too. I guess I just don't care anymore.

So, surgery on a "hypochondriac" wouldn't be successful, because it's all in my head. Well, it's all in my spine, nerves, muscles. I can't help it that I have multi-system problems. How do you use the power of the mind to form gallstones, or endometriosis/fibroids/varicose veins/abdominal adhesions, or a heart condition, or scoliosis, or dystonia? Really? So I'm being prejudged. I don't know if my scoli surgeon has these reports or not. I'm guessing he does. I see the demeanor of docs change when they find out about this stupid MMPI. The test went so far as to say I act like a baby around men! I told my husband that and he just started laughing because it couldn't be farther from the truth! Wow. So the insurance company has a strangle hold on me for that. The stupid pain doc pushed and pushed for me to have a surgery I didn't want that required this test. I finally, out of desperation took it just so I could talk to him about it. Mind you, not so that I could have the surgery. I couldn't see him again until I took the stupid test. Then when I did see him, the first thing out of his mouth is, "Why are you seeking to have surgeries?" He referred to my request for a second opinion and the surgery that he pushed VERY hard for me to have (you can read about that on my other thread). He said, "I'm not going to do this procedure on you, it is surgery!" That made me wonder why he even suggested it in the first place! Then during my epidural, he all but made fun of me for trying accupuncture.

Yes, insurance companies have too much power. They put too much emphasis on statistics without looking at the facts of each individual case. I believe that my level of care has suffered as a result of this test, which is really pathetic. I could retake it and lie about my medical problems because one question was, "Do you lie?". I'd just answer yes to that! Ha! Then I'd be a lying psycho instead of a hypochondriac! Whatever. Sorry guys. I'm ranting on someone elses thread. But, in answer to the question on this thread, I'd rather have surgery in my 40's than my 60's. I can't imagine that my health is going to improve by leaps and bounds over the next 20 years.

Doodles
06-24-2012, 10:19 PM
Rohrer--
This is horrible that you have had to go through all of this! I can entirely sympathize with some of the symptoms you have & I have had. Things I had years ago that I never made a connection to the scoliosis. Awful menstral and pre-menopausal problems, swallowing/choking problems (had to have esophagus stretched), headaches, heart arythmia, etc. etc. Quite often someone will mention some problem on here that doesn't seem related but then several will chime in and say, Oh I had that symptom too! For a while I I was searching for answers never considering the scoliosis and was sent to an internist who started asking me all of those "psychological" problem-type questions . I was so angry that the guy just thought I was nuts; no I just wanted to feel better.
I guess I was really lucky with my insurance company but I so feel for you that you are having to go through all of this. Don't worry about the rant--and you are NOT psycho! That ridiculous sexist test makes me furious. I think you nailed some important points here as you often do. I hope you find some answers. Janet

Irina
06-28-2012, 12:42 PM
Be sure to let us know what your Cobb’s are when you find out.
Ed

I went to a local doctor yesterday and he measured my thoracolumbar curve at 70 and lumbar at 40 degrees. Back in 2010 I took an x-ray, looked at it, was about to pass out, and didn’t go to any surgeon. Now, I brought this old x-ray to my appointment and the doc. measured it at 67 TL and 34 L. So, it progressed, but not by a lot. Also, 2010 x-ray was taken in the morning, and yesterdays’ at 4 PM. I have a LOT of rotation though and no lordosis. My spine is curved in the opposite direction from where the normal lordosis should have been and he is concerned about that more than about cobb angle.

Even though there is not a lot of progression since 2010, he is advising to have a surgery. He said that since I lost three inches in height since 18 years old and have a big curve, it will keep progressing and getting worse and worse. The doc said that the fact that cobb angle didn't change much since 2010 is not really meaningful. What matters is 3 inches height loss. I asked him: “Can progression stop on its own?” and he said: “No”. I also asked him - what is the worst case scenario if I don’t have a surgery and he said – more deformity, low back pain, sciatica, weakness in legs and problem with gastro organs down the road. He laughed at my question: “Will I be on an oxygen tank or in a wheel chair?” and said: “NO”. The doctor used a term 'collapsing spine' a lot during conversation. He said that he can get 85% correction, which I found to be overly optimistic. Isn’t it usually 50%?

I am not in a lot of pain, but it’s slowly getting worse. I still can do anything I want, but I feel worse than in 2010 because of my rib cage pressing on a pelvis bone. Not painful, but very uncomfortable. I am going to UCSF in July and interested to hear what they would have to say.

Talk to me please, especially people who were not in a lot of pain before the surgery.

golfnut
06-28-2012, 03:42 PM
Irina,
I was not in a lot of pain before my surgery as I previously put in a post and have never regretted having surgery and going through the recovery period. I am not one to look back and say that I wish that I would have had the surgery sooner. I tried to ignore my scoliosis and avoided going to a surgeon until I was in my 50's, so I don't know what would have been recommended 20 years ago. Fortunately, Dr. Lenke was able to get a good correction for me at age 60, but it probably would have been easier with a more flexible spine if I had had the surgery sooner. On the other hand, I'm glad that I had the advantage of his techniques that I'm sure have improved in the past 20 years. I know that there are a few things that rods in my back prevent me from doing easily, but all of the advantages far outweigh the disadvantages for me.

Irina
06-28-2012, 04:18 PM
Karen,

Did you have a lot of progression or there was no way to tell because you didn't have earlier x-rays?

It looks like my cobb angle has changed only slightly during the last 2 years and I don't have that dramatic 10 degree in a year progression that pushes people towards a surgery quick. I've heared many times that large curves progress 1 - 1.5 degree a year, so if I do a math, I will be in 96 - 106 degrees range at 70 years old, which doesn't sound like fun... Are there any cases out there when large curves stopped progressing by itself or it's a wishful thinking?

golfnut
06-28-2012, 04:33 PM
Irina,
I had x-rays of my back when I was in high school and don't even know the degree of curvature. The Dr. at that time gave me special exercises to do and didn't think that it would progress. It certainly did progress, but was somewhat gradual so I started to buy only loose fitting tops and had to have one pant leg hemmed shorter than the other. When I developed a rib hump, I knew that I had to see a spine doctor once again which was about 37 years later than when I saw the first one. X-rays are really shocking and seem to magnify the curve or at least what I would have thought the curve should look like. I know that surgery was the right decision for me. I'm proud that I had the courage to do something before it was too late. Without this forum, I am not sure I could have gone through with it, as I was petrified, extremely active, and enjoying life as it was with little pain. I am now all of the above except for the petrified part and have a much better prognosis, hopefully, because of having had the surgery.
Choosing the best surgeon that you can is instrumental if you decide to have surgery.

JenniferG
06-28-2012, 05:03 PM
Thanks everyone for the advice. Unfortunately, with my experience it seems that the surgeon's are looking only at curve magnitude and not overall symptoms. Another thing that happens frequently is that I'm not in pain and have good range of motion during my exams (although my ROM is really reduced in my neck now). It's like the knock in your engine that suddenly quits when you take it to the mechanic. Go figure! Also, they always say I have an odd curve, but never take into consideration what the implications of that odd curve are. They just seem to focus on the Cobb angle. I'm stuck as far as who I can see. I hand picked Dr. Tribus when I had state insurance and I liked him because he seemed to understand my pain cycle. I had to fight with my husband's insurance company to continue to see him, only to find out that he is the one they send all of their referrals to anyway. Why the fight then? They made me see the head of neurosurgery. I was hoping to get a thorough second opinion with Dr. Hey, but his receptionist said he prayed about it and cancelled my appointment. He e-mailed me and said there were plenty of good doctors in my area, which is true. I tried to get a second opinion with Twin Cities Spine Center since I'd seen Dr. Perra there before. My insurance nixed that and wouldn't approve a second opinion out of network. That makes NO sense since there are no scoli docs in network. Even if they did approve it, they would go with the one that didn't want to do surgery. They don't want to pay.

Yes, insurance companies have that much power! My GP was frustrated with a particular insurance company that many of his elderly patients have. This company wouldn't pay a few dollars for a life-saving medication for one of his older ladies. She couldn't afford the med because of fixed income. They let her die. Insurance companies are in it for the $$$ and nothing else. They don't make any money on me, for sure. This probably isn't in my favor, but what am I to do? The docs are frustrated because they can't help me. I've tried just about everything. I'm getting written off as a nut-case. My scoli surgeon said I have a drug problem (my only problem is that I DON'T want to take drugs!), I had one psychologist call me a hypochondriac, my pain doc (after talking to the psychologist) called me a surgery seeker for wanting a second opinion, and now my GP said he thought I was getting satisfaction in the fact that no one could help me! What the heck? I'd have to be one sick puppy to put myself through all of the bologna that I've been through. I'm getting to the point where I HATE doctors. Just because they can't treat my condition doesn't make me mentally sick. I'm so frustrated.

The hypochondriac "diagnosis" came from the medical MMPI that I took because my pain doc wanted to do a surgery that I really didn't want. After about 9 months of thinking about it and not feeling that much better, except for the low back injection, I went back out of frustration to reconsider the procedure. I HAD to take the test. It's geared against women. They ask about female pain, which I have because of endometriosis, fibroids, adhesions, and internal varicose veins. They ask about our view toward men (no such questions were asked about male sexual function/pain/or view toward women). They ask about GI issues. I've had my gallbladder removed and have legit problems there, so I had to answer yes. They ask about headaches, which the nature of my scoli causes headaches. They ask about heart symptoms like palpitations, I have a tachy arrythmia so that was a yes. They ask about fainting, I have low blood pressure plus the beta blocker for my heart rythm lowers it even more, so that happens on occasion. So he said that my "hypochondria" was based on my answers to those questions. What?! Then he said, "What surprises me most is that you actually DO have pathology." I've been dealing with this garbage for the last two years. They forced me to see a pain psychologist for my "hypochondria" and if I didn't they could refuse to treat me. I've never posted this here before because, quite frankly it's embarrassing to be accused of those things when there are legitimate medical problems behind every question I answered. Why the heck are there medical questions on a "personality test" anyway?! So my insurance company uses this, I'm sure. Any doctor I see is biased before I ever see them, and even if they're not, I feel like they are and am not at ease. It's a mess. I feel like giving up, but I can't. I have to live and be functional. Sorry for the TMI and the rant. Some of you may think I'm psycho now, too. I guess I just don't care anymore.

So, surgery on a "hypochondriac" wouldn't be successful, because it's all in my head. Well, it's all in my spine, nerves, muscles. I can't help it that I have multi-system problems. How do you use the power of the mind to form gallstones, or endometriosis/fibroids/varicose veins/abdominal adhesions, or a heart condition, or scoliosis, or dystonia? Really? So I'm being prejudged. I don't know if my scoli surgeon has these reports or not. I'm guessing he does. I see the demeanor of docs change when they find out about this stupid MMPI. The test went so far as to say I act like a baby around men! I told my husband that and he just started laughing because it couldn't be farther from the truth! Wow. So the insurance company has a strangle hold on me for that. The stupid pain doc pushed and pushed for me to have a surgery I didn't want that required this test. I finally, out of desperation took it just so I could talk to him about it. Mind you, not so that I could have the surgery. I couldn't see him again until I took the stupid test. Then when I did see him, the first thing out of his mouth is, "Why are you seeking to have surgeries?" He referred to my request for a second opinion and the surgery that he pushed VERY hard for me to have (you can read about that on my other thread). He said, "I'm not going to do this procedure on you, it is surgery!" That made me wonder why he even suggested it in the first place! Then during my epidural, he all but made fun of me for trying accupuncture.

Yes, insurance companies have too much power. They put too much emphasis on statistics without looking at the facts of each individual case. I believe that my level of care has suffered as a result of this test, which is really pathetic. I could retake it and lie about my medical problems because one question was, "Do you lie?". I'd just answer yes to that! Ha! Then I'd be a lying psycho instead of a hypochondriac! Whatever. Sorry guys. I'm ranting on someone elses thread. But, in answer to the question on this thread, I'd rather have surgery in my 40's than my 60's. I can't imagine that my health is going to improve by leaps and bounds over the next 20 years.

OMG rohrer, I am just horrified at your story. Deeply sorry you have to go through this. Is there any sort of over-seeing board/organisation who can bat on your behalf? Or are the Insurance companies lord and master? You state your position so well, there must be someone who can listen and help, surely. Disgusted is the feeling I had reading about the "test." We are still in the dark ages in some respects.

JenniferG
06-28-2012, 05:12 PM
I went to a local doctor yesterday and he measured my thoracolumbar curve at 70 and lumbar at 40 degrees. Back in 2010 I took an x-ray, looked at it, was about to pass out, and didn’t go to any surgeon. Now, I brought this old x-ray to my appointment and the doc. measured it at 67 TL and 34 L. So, it progressed, but not by a lot. Also, 2010 x-ray was taken in the morning, and yesterdays’ at 4 PM. I have a LOT of rotation though and no lordosis. My spine is curved in the opposite direction of where the normal lordosis should have been and he is concerned about that more than about cobb angle.

Even though there is not a lot of progression since 2010, he is advising to have a surgery. He said that since I lost three inches in height since 18 years old and have a big curve, it will keep progressing and getting worse and worse. The doc sais that the fact that cobb angle didn't change much since 2010 is not really meaninful. What matters is 3 inches height loss. I asked him: “Can progression stop on its own?” and he said: “No”. I also asked him - what is the worst case scenario if I don’t have a surgery and he said – more deformity, low back pain, sciatica, weakness in legs and problem with gastro organs down the road. He laughed at my question: “Will I be on an oxygen tank or in a wheel chair?” and said: “NO”. The doctor used a term 'collapsing spine' a lot during conversation. He said that he can get 85% correction, which I found to be overly optimistic. Isn’t it usually 50%?

I am not in a lot of pain, but it’s slowly getting worse. I still can do anything I want, but I feel worse than in 2010 because of my rib cage pressing on a pelvis bone. Not painful, but very uncomfortable. I am going to UCSF in July and interested to hear what they would have to say.

Talk to me please, especially people who were not in a lot of pain before the surgery.

Hi Irina,

I am another who wasn't in severe pain before surgery but am very happy with my surgery. My results are far better than I was expecting. I am not sure of your age, but my curve didn't progress much either, until my 50s. I went from ignoring it to noticing it, to knowing I had to do something to stop it, over 7 years. The reason I'm wondering about your age is, for me, the further into my 50s I got, the faster my curve progressed. You may find the same thing as you get older. I'm assuming you're in your 40s.

85% correction does sound a lot. I was told 60% (I was 57 and reasonably flexible.) In the end, I reduced from 68 degrees to 22 degrees which, though a cosmetic result was secondary to my concern about increasing pain and disability, I was extremely happy with.

mabeckoff
06-28-2012, 05:29 PM
I think that each one of us knew when to have surgery. I , also, feel that once you find the correct doctor surgery is not so scary

Irina
06-28-2012, 06:00 PM
[QUOTE=JenniferG;140861]Hi Irina,

I am not sure of your age, but my curve didn't progress much either, until my 50s. I went from ignoring it to noticing it, to knowing I had to do something to stop it, over 7 years. The reason I'm wondering about your age is, for me, the further into my 50s I got, the faster my curve progressed. You may find the same thing as you get older. I'm assuming you're in your 40s.

QUOTE]

Jennifer,

I am 44. My curve was stable during my 20-30s (or it seemed to me that way), but it started getting significantly worse since I hit 40s. It's a slow and steady progression that I am noticing more and more. I don't know what my curve was when I was 30, but visually I was not nearly as deformed back then as I am now. I am probably a classic example of a 1-2 degree a year progression...

I am leaning towards having this surgery rather sooner than later because I don't think I will be able to avoid this. I hope I’d have a clearer picture after I get several other medical opinions.

Confusedmom
06-28-2012, 09:08 PM
Irina,
My situation was very similar to yours, except that I had the xrays to document progression. Do you know your Cobb angle from any other time period? You need at least about a 6 degree change to show progression because of the wide margin of error. Even that may not be accurate if you were measured by two different people. If you are not in pain and not progressing, I would avoid the surgery. You are young enough you can wait 10-15 years and still have the surgery if needed. However, if you have certain progression (I did), then I would look into surgery. But do NOT go to your local surgeon unless he/she happens to be one of the very best. If you need names of the best, PM Linda Racine. I did have surgery and got about 80 percent correction. But I think that is higher than most. I am less than four months post op, but I am still in pain (on some daily pain meds) and I'm worried about pain in my leg. It is nerve pain that was not there pre-op. I am worried that it will not go away even though I had surgery with one of the best surgeons. I hope that's not the case, but there are no guarantees. I am walking a lot and hoping to start PT soon to address it, but I'm just not sure at this point. The surgeons will tell you it's possible to end up in more pain after the surgery. So I would not do this unless you are SURE you need to. If you are sure you need surgery, then it's worth the risks.

Best wishes,
Evelyn

Irina
06-28-2012, 10:42 PM
Hi Evelyn,

I don’t have any other x-rays. The only ones I have are from 2010 and yesterday, and all I know that in 2010 I had 67TL – 34L and in 2012 it is 70TL – 40L (measured by a local surgeon. Btw, here are 6 degrees in lumbar progression if it is measured correctly). Wish I had something from ten years ago, but I know for sure that I was not as crooked at 34 as I am at 44 and didn’t have rib cage sitting on my pelvis bone even a year ago.

I scheduled two other appointments – one with Dr. Hu in UCSF and another with Dr. Pashman in LA. What made me think yesterday is the confidence of my local surgeon that my curve will NOT stop progressing because I lost those 3 inches in height. But who knows? Can one be absolutely sure that large curves will always progress???

Would that be Ok to send you a private message sometimes? I read a lot of your posts because, like you said, our cases seem to be very similar. I hope that your leg pain is temporary and will go away soon. Four months is still early in recovery, but what do I know. Thank you so much for your thoughtful response!

Irina.

titaniumed
06-29-2012, 12:22 PM
Irina

I think that you will like Dr Hu....

I have been to 2 of the Scoliosis conferences at UCSF, and all of the people there are great. Dr Hu wrote a chapter in Dr Moes’s book decades ago, so she has been on the scene a LONG time. She worked and probably still works with Dr Bradford who is an ICON of scoliosis. The procedure he invented (partial corpectomy) was used by my surgeon in my anterior surgery....All came through (TCSC) Twin Cities Scoliosis Center through the years....including my surgeon. That’s where (SRS) The Scoliosis Research Society was founded. Many surgeons go through UCSF for training, Dr Pashman being one of them.

Be sure to find Linda Racine when you go, she works there with all these great people.

Dr Burch works with a computerized system that examines and details the actual formation or malformation of each vertebrae. It decides which areas to remove and fuse.....a valuable tool for maximum deformity, for the worst of the worst.

These are very special people....brings tears to my eyes. UCSF is one of the best hospitals in the world, if not the best.

Just remember that its ok to say that you want to think about things....you don’t have to commit. They all understand this and want YOU to to make an educated decision, the most important decision of your life. This standard of excellence should be adopted everywhere.

Be sure to let us know how it goes. Bring all your x-rays and data with you.

Ed

Doodles
06-29-2012, 12:55 PM
Ed--
Question for you: What is the partial corpectomy? I don't think I've heard that term before. Thanks. Janet

titaniumed
06-29-2012, 02:35 PM
Janet
There are 2 procedures, its not common and I think started as a cervical specialty. Dr Men-Muir is a cervical specialist also.

Corpectomy is when they remove the whole vertebrae. This usually is the result of an extreme trauma. They will install a device to replace the removed vertebrae.

Partial corpectomy is when they remove your endplates due to disease....Not only did I have severe DDD, but my lumbar vertebrae were diseased also. I have read that this happens when you wait too long for surgery........it starts with DDD.

Bone needs to bleed so fusion can occur and the diseased endplates will not bleed. After removing that diseased bone, the height is thinned and oversize spacers are inserted.....I have 5, 13mm spacers or 2 1/2 inches of PEEK in my lower back. PEEK is now the new wonder spacer material these days.......used in anterior surgeries.

Without my partial corpectomy, I would not have fused or chances would have been lower. It guaranteed my fusions. I didn’t dictate procedure, I wanted to be done without any revisions.....I didn’t want to come back since I felt that I couldn’t handle it again at an older age. The pain was mind blowing, I guess I’m pretty tough. (smiley face)

I’m an example of waiting too long for surgery. People can have HUGE 100 degree plus x-rays, but others like me can have smaller curves and have other problems also......These things are difficult for “specialists” to catch, that’s why everyone needs to visit a qualified “scoliosis surgeon” before making ANY decisions. Just because a person makes that visit does not mean that they will have surgery, it helps in ruling out the surprises that the others WILL miss.....I almost had the door completely slam shut, I slipped my foot in just in time.

Scoliosis should never be ignored....Get those checkups from a scoliosis specialist!

Ed

LindaRacine
06-29-2012, 04:45 PM
Ed...

I remember Dr. Bradford showing me probably 15+ years ago, an xray of someone on whom he'd just done a 3-level corpectomy. At that time, I could never have imagined such a thing was possible. Now, it's relatively common to see corpectomies, vertebral column resections, and pedicle subtraction osteotomies.

--Linda

Confusedmom
06-29-2012, 05:51 PM
Irina,
It sounds like you are on the right track--seeing some top-notch surgeons and really thinking things through. The loss of height and increased rotation surely suggest progression. I remember my local surgeon saying to me that his measurements of me had hit 68 degrees, up from 62 a few years before and so that made him sure I was progressing (outside the margin of error). I was like, well duh?! Have you looked at my back? It did not look like this when I was in college or when I got married! So, I know what you mean about being pretty certain you've had progression, even without the xrays.

Thanks for the well-wishes on the leg, and of course feel free to PM any time! (You're so polite--I don't ask people first!)

Best,
Evelyn

Irina
06-29-2012, 10:01 PM
Irina

They all understand this and want YOU to to make an educated decision, the most important decision of your life.

Ed

Hi Ed,

For me, the most important decision in my life was moving to the United States fourteen years ago. It took me a looong to decide to leave everything behind and move to the other side of the world, but I am so glad I did! Like a scoli surgery, a first year was rough, but life is good now. So, the surgery (if I decide to do it after thinking about it for a looong time) would be a second most important decision in my life :-) Hopefully it goes like my immigration – rough first year and then happily thereafter.

Btw, guys, bear with my creative spelling as English is my second language. Happy Friday!

Doodles
06-30-2012, 12:56 PM
Ed--
Thanks for your detailed understandable post. I was totally unfamiliar with this. Thought it tied into thorcoplasty/rib hump surgery. Yes, "pretty tough"; that's an understatement!

Irina--
Your posts are absolutely fine, and this is from a former English teacher. Where did you come from? I may have missed this on earlier posts. We're glad you are here!

Janet

Irina
06-30-2012, 02:01 PM
Ed--
Thanks for your detailed understandable post. I was totally unfamiliar with this. Thought it tied into thorcoplasty/rib hump surgery. Yes, "pretty tough"; that's an understatement!

Irina--
Your posts are absolutely fine, and this is from a former English teacher. Where did you come from? I may have missed this on earlier posts. We're glad you are here!

Janet

Janet,

I am originally from Ukraine.

Doodles
06-30-2012, 06:32 PM
Irina--
Your name was of interest because we went to a Russian restaurant 2 nights ago in Des Moines, Iowa; it's called Irina's and it's fantastic. Baltica beer was great too. You will have to come visit your namesake restaurant! Janet

Doodles
06-30-2012, 06:40 PM
Decided it was time to fix signature. Yikes I just advanced 2 years. I was really clinging to that 59, I guess.

titaniumed
07-01-2012, 02:44 PM
[QUOTE=Irina;140913]
For me, the most important decision in my life was moving to the United States fourteen years ago. QUOTE]

I agree, it probably was a good move, especially in having scoliosis. Moving near the best surgical centers is something we have to think about even living here in the United States. Years ago, there were only a few places to have surgery. It seems that in the last 15 years or so, there has been more awareness of scoliosis and how devastating it can be. Now, there are scoliosis surgeons popping up everywhere. I myself was ready to move back to California since there were no scoliosis surgeons up here in Reno years ago.

And a belated welcome to California! I remember when I first heard the term “bitchin” years ago....which is California slang. We all have our language barriers, English can be a tough language. (smiley face) Its in the dictionary now. LOL
http://dictionary.reference.com/browse/bitchin?s=t

Your doing just fine with your English.

Even though you could possibly be operated on by a great team, it is wise to be aware of complications because they happen. I know it’s a scary subject, but this is why it suddenly becomes the most important decision of your life.

Infection, non-union, stubborn bleeding, pain, blood clots, etc are things that we need to be aware of. Surgeons will explain these things to you, usually they are discussed after you have made your decision.......I’m sorry I have to bring this up, its important. Many of us come through our surgeries just fine like myself, but like Linda has said, complications only matter when they happen to you.

Ed

bluestone
07-01-2012, 03:47 PM
I had my surgery when I was 44-almost 45. I was diagnosed when I was 24 and muddled through my 20s/30s in a fair amount of pain which became unbearable when I hit 40.
Unfortunately I only ever saw Orthopedic drs who didn't specialise in scoliosis and until I joined a support forum I didn't realise that if I didn't get to see a scoliosis specialist I could be in trouble regarding how quickly it was progressing.

I asked my family dr and he did the referral. I was shocked when he told me my curve was 72 degrees and that I need to have surgery or it will progress. Within a year of seeing him it was done.

There are times when I wonder if it was the right thing but what was the alternative? Some days I can't decide whether my pain is worse than before surgery, it depends in what I've been doing. I'm disappointed that I'm still restricted because of pain and sometimes it feels as if my body doesnt want this metal in it-I have 28 screws and sometimes when I lie down I can feel a lot of them.

I wouldn't have wanted the surgery when I was younger because it was much more traumatic then and having it at 44 was right for me, my kids were 18 and 14 so weren't reliant on me but I wouldn't have wanted it any older either because for me it was tough on my body and I've found it hard to get back to some sort of fitness.