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View Full Version : Before I spend $$$ on a second opinion...



seawave
08-03-2013, 08:43 PM
Hi,
I'm new here and wanted to see if anyone out there might have experience or an opinion about my situation. I'm 52 and was diagnosed with a double major curve around age 10; never treated with brace or surgery. I began experiencing intermittent pain starting in my 30's and got checked around age 38 to see if my curve had worsened. According to my orthopedic doctor who was close to retirement, there was no significant change. I didn't think to ask what my curves were at the time but I remember that when I was around age 14 the doc was concerned that if my curve got "one degree worse" we would have to discuss taking some action. .... but I finished growing and, of course, the thinking back then was that curves were stabilized from then onward.

Fast forward to my forties when I noticed more pain, especially concentrated around my left SI joint. I noticed that back exercises that I'd done for years I could no longer do without experiencing lingering pain (especially involving sit ups and lower back stretching.) A few intense short pain episodes drove me to the doctor where I got x-rays and discovered my curves have worsened...77 degree right thoracic and 83 degree left thoracolumbar. I have lost 2 inches of height so far.

A recent visit to an new orthopedic specialist gives me no reassurance for the future. He believes that curvature degree severity matters little in determining the need for surgery -- only chronic debilitating pain would indicate surgery. He said I was "well balanced" but admitted my curve is "pretty severe" and that I will continue to lose height and shrink in my torso and is of the school of thought that no exercise can prevent progression. He said I will eventually wind up with my rib cage resting on my pelvic bone.

I have been lucky so far with the pain, because even though it's chronic and nagging and sometimes worse with extended periods of sitting and standing, mostly I can get by without painkillers (so far and for the most part). I've had a few short courses of PT, which have helped. At times it does flare up, and when it does, I can't help but wonder what I'm in for regarding pain and disability in the future. But this doctor claims he's seen "old people twisted up like pretzels" and still doing OK.
Needless to say, I left the appointment feeling uneasy and worried. Also this doc felt no need to do anything other than confirm my height loss, so he did not order more x-rays. As I said, his focus is just completely on pain. He left the impression that I just need to accept it and live out my life untreated. He said I was lucky I never got the surgery as a teenager (I agreed) and that my curve will never progress as fast as it did during puberty. (I couldn't help but wonder after I left -- if scoliosis like this can have such a benign prognosis, why operate on the younger ones?)

Surely there must be others similar to me in terms of age, curves and having never been treated? I wonder what our prospects are down the road -- are we looking at certain pain and disability along with our increasing deformity, or....??? I think my biggest fear is one day finding that I need surgery but am too old for it.

jrnyc
08-03-2013, 10:35 PM
hi seawave
welcome to the forum...there are many kind and thoughtful people
here who are willing to share their own experiences with scoliosis..

i have not had surgery..yet...though all the surgeons i saw told me
i need to...including a few top guys... Boachie, Lonner, Neuwirth.

i did not see mention of where you live...
is it difficult for you to go to see a surgeon for another opinion...?
i think it is rare that large curves do not cause pain...
i have read that curve size does not equal pain severity...
but i have rarely read of people with large curves who are not in pain...
i have seen it mentioned on this forum...but not that often...

if it is not a problem for you to travel, and you do not live on the
far outskirts of being able to reach transportation, i would suggest
another consult...with a top surgeon if you live close enough to one...
also...i am curious as to why it would cost YOU money for another
visit with a surgeon...i would think your insurance would pay for it...
????
also....it is often stated that the reason for surgery is stopping curve
progression...there is NO guarantee of relief of pain, though i think most
people get some pain relief after they heal from surgery.

best of luck...
jess...and Sparky (the wonder puppy)

JenniferG
08-04-2013, 01:17 AM
Hi seawave,

I was 57 with a thoracic curve of 68 when I had my surgery. I'd ignored my scoliosis since I was diagnosed at age 13, but although my pain was relatively easily treated with over the counter medication, my curve was rapidly getting worse and so was my pain. I saw one surgeon and he told me I needed surgery, preferably within 12 months. I did, and I now have a 22 degree curve (unnoticable to the untrained eye) and no pain whatsoever. I was fused T4 - S1 and pelvic fixation (two large bolts into the pelvis.)

My curve increased rapidly between age 50 and 57 and from reading this forum, that seems to be commonly the case. I probably would have had been left with a smaller curve if I'd had my surgery in my early 50s than at 57, however, I'm very happy with my outcome. I'm 4.5 years out from surgery and so far, so good!

Welcome to the forum!

leahdragonfly
08-04-2013, 11:26 AM
Hi seawave,

I agree completely with Jess that you need a second opinion. You definitely need to see a scoliosis specialist, not just an orthopedic surgeon or even a "spine specialist." It sounds like the surgeon you saw was a compete jackass and I think his advice is bad.

There is a list of scoliosis specialists available on the Scoliosis Research Society website: http://srs.execinc.com/edibo/PublicDirectory. You can search by geographical location. If you mention your state or area people may be able to give you some recommendations.

Best of luck, and please let us know how things are going for you.

susancook
08-04-2013, 01:24 PM
Welcome! From what I understand, you are uncomfortable, but not in severe, or activity limiting pain. That gives you time to think, digest, and make a calculated, thoughtful decision. I agree w/ Gayle that your ortho guy that you saw was a jackass (love you Gayle, you cut to the quick).

First you need a "deformity SRS spine surgeon", not someone who does frequent, occasional spine surgeries, but someone who specializes in this kind of surgery. Sounds like you did not bond with the guy that you saw, and it is paramount that you have complete confidence and trust in your surgeon. There is a list of top 28 spine surgeons in the US which might be some guidance. You need an MD who does major spine fusions at least half of his/her surgery schedule. University Hospitals have some advantage.

Cannot remember if you mentioned where you live, but if you can tell us where it is, then people can give you some suggestions of docs. You may need to travel to get very specialized care. I traveled 12 hours to have surgery with an MD that I could trust.

Too old? There are many of us in our 60s who had surgery very successfully. Certainly with age comes slightly increased risks, but some of those depend on your health and fitness status before surgery. One factor that is age dependent is osteoporosis which increases the risk somewhat.

Good luck....we are here to support you.

Susan....age 66, 4 months out from surgery and pleased w/ the results

I just read Linda's post which is below mine. Her recommendation to wait to have surgery until you have tried all conservative treatments and are still in a lot of pain that compromises your quality of life is sage advice. It seems that most people have some complication, minor mostly and mostly short term and fixable or you are able to live with it. For those people who come out of surgery in more pain or equal pain than before surgery and/or more disability, then surgery might not have been worth it. Having surgery is a craps shoot.....of course the are some variables that you can control, but frequently the bad outcomes are random and happen to even the top spinal surgeons. Surgery is not reversible.

LindaRacine
08-04-2013, 02:07 PM
Hi Seawave...

I wouldn't jump to the conclusion that the ortho you saw was wrong. And, I totally agree with him that curve severity is rarely the reason an adult should have surgery. Scoliosis surgery is big and risky. It very often causes new pain that can be short term, long term, or permanent. The risk of complications is very high. While most complications are minor and temporary, they can be major and permanent.

I work in a spine center where a lot of complex spinal surgery is performed by 9 surgeons. Several of those surgeons are very conservative, so I get to meet a lot of patients like you. My own surgeon is super conservative, and he probably tells 75%+ of patients like yourself, that they should try to treat their scoliosis as conservatively as possible (with injections, physical therapy, etc.) The only time I've seen him treat patients differently is when there is significant leg weakness or debilitating pain.

There is always the risk that there might be a point in the future where surgery is not possible, but I think that's offset by the possibility that you might be able to avoid surgery the rest of your life. By the way, not all surgeons do surgery on older folks, but where I work, they're doing big complex surgeries on patients up until about age 90.

Only you can know what's right for you. My advice would be to take your time and think hard before making the decision to go forward with surgery. Once it's done, there's no going back. If you haven't already done so, check out the stick threads for patients who are happy they had scoliosis surgery and patients who feel it was a mistake.

Good luck with whatever you decide.

Regards,
Linda

Irina
08-04-2013, 04:16 PM
Hi Seawave and welcome to the forum.

I was diagnosed with scoliosis at the age of 7, was never braced and had my first (and hopefully the only one surgery) at the age 45. Pulling the plug and going forward with this surgery was probably the hardest decision I've ever made in my life. I was not in a lot of pain, but it was progressively getting worse and limiting my activities. And my curves progressed by a lot in my forties. What helped me to make the decision was methodical comparison of pain levels and activities I was able to do five years ago vs. now. By the way things were going, I didn't need a doctor to tell me that things will get worse. I knew that in five years I would be able to do even less because I had no reason to believe that all of sudden my back degeneration will stop.

I am five months out of the surgery and happy with the outcome. I have to tell you that I had a complication, which is resolved now, but the first month was a nightmare. Get a second opinion, read more about the surgery and take your time to decide. You need to be confident that you want this surgery. Good luck!

seawave
08-04-2013, 04:30 PM
Thanks so much to everyone for your kind responses and thoughts...It means so much to find this group...and having your support means so much, I just wish I'd done this a long time ago! It feels great to communicate with others with scoliosis. Thanks again everyone!!!

I do respect my doc's opinion and conservative approach to surgery. He did say that any surgery for my double major curve would be challenging and that he would have to fuse all the way to the pelvis. I have considered often that the surgery is huge, risky, entails all kinds of possible complications and might leave one with more and new pains than before and that there's no going back. It sure makes sense to go into this carefully and think long and hard before taking the plunge. ...and I'm not disabled by pain at this point. And the doc made clear it wasn't even an option as things are. I understand.

So it's the future I worry about. The doc said further curve progression is a certainty and can't be avoided. Wish there were a crystal ball I could look into to see what awaits in terms of pain, disk herniation, curve progression, shortness of breath, possible organ crowding with torso shrinkage, quality of life down the road, deformity, etc. (on the other hand, maybe I wouldn't want to see that : ] ). Am I between a fire and a frying pain? I would love to find someone else who has a pretty severe curve who has made it into older age without any surgery and has done pretty well.... Where is that person? If there is reassurance to be found, it would be from finding someone out there with curves this big or greater who never got surgery and is doing well into their seventies or beyond. Anyone? I've seen a few of the studies which say that untreated scoliosis patients can function OK into old age with no increased mortality...but with a thoracic curve close to 80* already, where am I going to be at, say, age 70, with shortness of breath issues? And all the rest? Isn't it intuitive to think that with increased curves will come increased complications from various things?

Finally, even though it may be vain to say it, I'm not thrilled about increasing disfigurement. I feel guilty saying it because things could be so much worse...but I'm sure many here can relate to struggles over the years with accepting our appearance as it is. It's always been a tough one for me, even back in the teenage years.

I guess I really need to get well acquainted with that line from the Serenity Prayer: "God grant me the serenity to accept the things I cannot change..."

btw, my health insurance is HSA through my husband's employer. It's one of those high deductible, high out-of-pocket deals, so that's the reason for the $$$.

Thanks again, all, for your responses... I really appreciate them all!

Irina
08-04-2013, 06:16 PM
Oh, yes, so many of us can relate to your struggles with appearance! I lived and still live in some state of euphoria over how good my back looks after the surgery. I always want to be around people and hear compliments and I think I became more social after the surgery. But we get used to good things fast, hehe. Now, that my back is straight, there are these few deep wrinkles that bother me and I never paid attention to them before. Botox time :-) It's a rejuvenation year!

But really, cosmetics should not be a deciding factor when going into this surgery. It is a very nice benefit though.

As for meeting older people with untreated scoliosis - can you ask your doctor, who said that he's seen patients bent like a pretzel in an old age, to connect you with these people?

jrnyc
08-04-2013, 08:33 PM
hi seawave
i would suggest listening to the advice to go see a top scoliosis surgeon
if you are able to travel...to get the opinion of someone who does these
surgeries all the time...
and most surgeons will offer a patient the phone number of another patient
who has had the surgery and is pleased with the results...
in your case, why not ask the doctor you saw if he can give you the phone
numbers of some of those "pretzel people" he refers to...
if they are doing so well without having had surgery, even though they
are all "twisted"....why not encourage them to talk to you...
?????????????
otherwise, i would want to meet such pretzel people in person...
up close...before i believed that they are not the rare exception...

and as someone who worked in the field of alcohol and drug addiction, i will
point out that the prayer also says "...change the things i can..."

P.S. i sent you a private message.

jess

leahdragonfly
08-04-2013, 09:55 PM
<snip>There is always the risk that there might be a point in the future where surgery is not possible, but I think that's offset by the possibility that you might be able to avoid surgery the rest of your life. By the way, not all surgeons do surgery on older folks, but where I work, they're doing big complex surgeries on patients up until about age 90.
<snip>
Only you can know what's right for you. My advice would be to take your time and think hard before making the decision to go forward with surgery.
Linda<snip>

I was not suggesting that seawave run out and sign up for surgery immediately, but I was suggesting that she find a more appropriately qualified surgeon who can monitor and manage her scoliosis in the best possible way.

As far as doing huge, complex scoliosis surgeries on 90 y/o's, I find it hard to believe this is common. In my mind it would be extremely difficult to balance the risk vs benefit ratio to any 90 y/o. What would be the rationale for surgery at that age? Surely it is not to halt progression? What is the mortality rate for a 90 y/o undergoing scoliosis surgery?

rkochis
08-05-2013, 03:48 PM
Seawave

66 years old male 68 degree thoracic 42 degree lumbar. 3/4" short left leg (probably caused the scoliosis)

Never contemplated surgery. Tried various PT programs and now do my own hybrid version.

Recent x-rays shows no statistical change but I improved 1 degree on thoracic. I thought it was going to be more. A little disappointing, but I will stay with my program. Feeling strong, still play golf and think I can lessen the curves overtime. If not, at least I am quite sure that my muscles, tendons, ligaments are more symmetrical.

If I can be of any help, you can contact me directly rkochis65@gmail.com

jackieg412
08-05-2013, 07:46 PM
Seawave,
I agree with everyone. Go see a spine specialist that does surgery on adults with scoliosis. It is never a waste of money if you do your research before picking your doctor. The national scoliosis society also has a web site that lists these types of doctors. Not all "Spine" doctors are scoliosis doctors.
Since you are still on the younger side and are not in a lot of pain--take your time. Ed would comment on that but I think he is out of the country.
I also have a comment--make sure you are prepared for the long road of recovery. Since this happened to me--make sure you can take off from a job for that extended amount of time. It is not possible to go back to all types of jobs. So be sure to set yourself up for the possiblity of not working at the same job.
The surgery itself is HUGE and there are a lot of things to think about. Your home,your family ,your work.
In the mean time--stay ot get healthy. You will need it and it is better for you anyway.
All of the people here can help with info from our lives, but you know yours.
Everyone is here to help and you will find answers that no doctor can tell you.
Tomorrow--I take my 16 yr old granddaughter to my scoliosis specialist.He saw her 2 years ago and said she had a slight curve--but she has more pain and I just want him to look at her again.I keep my fingers crossed that nothing is needed.

LindaRacine
08-06-2013, 12:35 AM
I was not suggesting that seawave run out and sign up for surgery immediately, but I was suggesting that she find a more appropriately qualified surgeon who can monitor and manage her scoliosis in the best possible way.

As far as doing huge, complex scoliosis surgeries on 90 y/o's, I find it hard to believe this is common. In my mind it would be extremely difficult to balance the risk vs benefit ratio to any 90 y/o. What would be the rationale for surgery at that age? Surely it is not to halt progression? What is the mortality rate for a 90 y/o undergoing scoliosis surgery?

Hi Gayle...

I rarely hear any surgeons talking about halting progression in adults. Thoracic curves tend to progress pretty slowly, so I'm guessing that's the rationale. I routinely hear surgeons say that the reasons for surgery in older adults are limited to significant pain and neurologic weakness.

The 80-90 years old that we see are usually in tremendous pain. (They would not be seeking out surgical opinions otherwise, IMO.) They actually have fairly good outcomes because they have little to lose and a lot to gain. A little complication like leg weakness is nothing to them when compared to the thought of being in near constant pain for the rest of their lives. None of our really old patients have died (at least since I've been at UCSF). They definitely have complications, but most are of the less serious variety. We have seen a few significant neurologic injuries, but I think they were expected in those cases cases, and the patients counseled about it prior to surgery.

One thing about patients >80 years old going into major surgery is that it's probably very important that they're in a major university hospital, with anesthesia staff who have a lot of experience with this type of patient. Coincidentally, I talked to a woman in her 80's on the phone today. She has scoliosis and has been told that she needs surgery. She's going to a doctor that I had never heard of, and who (based on his bio) probably has done almost no long fusion surgeries. I tried to convince her that she needed to see someone with a lot more experience, and be treated by hospital staff who are familiar with big surgeries on older patients, but she does not want to go into San Francisco for surgery (even though it's less than 15 miles from her home). I think that's a disaster waiting to happen.

--Linda

jrnyc
08-06-2013, 10:49 AM
as an adult, i was told my lumbar spine would get worse...
i was advised to have the fusion to halt progression and to reduce pain...
i was over age 50 when told that..

since that time, my lumbar measurement has gone from 61 degrees to 70.
thoracic curve has had a smaller increase.

jess

Susie*Bee
08-06-2013, 11:03 AM
Mine went from 48 to 52 in about 1.5 years, in my mid 50s, and was told it would continue to increase.

Doreen1
08-06-2013, 03:08 PM
In a 5 year span my double 40 degree curves progressed to 70 and 68 degrees. My spine was collapsing fast and the year of my surgery, 2011, I lost 4 inches of height in one year. Talk about painful! I knew in 2006 when my curves were 40 degrees, that I would need surgery at some point in my future, but the time wasn't right for me at that stage. Things became crystal clear in 2011 the need for surgery.

susancook
08-06-2013, 08:41 PM
Hi Gayle...

I rarely hear any surgeons talking about halting progression in adults. Thoracic curves tend to progress pretty slowly, so I'm guessing that's the rationale. I routinely hear surgeons say that the reasons for surgery in older adults are limited to significant pain and neurologic weakness.

The 80-90 years old that we see are usually in tremendous pain. (They would not be seeking out surgical opinions otherwise, IMO.) They actually have fairly good outcomes because they have little to lose and a lot to gain. A little complication like leg weakness is nothing to them when compared to the thought of being in near constant pain for the rest of their lives. None of our really old patients have died (at least since I've been at UCSF). They definitely have complications, but most are of the less serious variety. We have seen a few significant neurologic injuries, but I think they were expected in those cases cases, and the patients counseled about it prior to surgery.

One thing about patients >80 years old going into major surgery is that it's probably very important that they're in a major university hospital, with anesthesia staff who have a lot of experience with this type of patient. Coincidentally, I talked to a woman in her 80's on the phone today. She has scoliosis and has been told that she needs surgery. She's going to a doctor that I had never heard of, and who (based on his bio) probably has done almost no long fusion surgeries. I tried to convince her that she needed to see someone with a lot more experience, and be treated by hospital staff who are familiar with big surgeries on older patients, but she does not want to go into San Francisco for surgery (even though it's less than 15 miles from her home). I think that's a disaster waiting to happen.

--Linda

Dr. Hu said that my chance of dying with major scoliosis fusion at 65 was 1/100. The mortality rate for 80-90 year olds should be pretty high, I would guess. Maybe the much older folks in SF are just healthier or luckier than normal.
Susan

PeggyS
08-11-2013, 06:08 PM
Reading this thread has been helpful because my current level of pain is manageable, with increased limitations on my activities.

I retired early from teaching in 2006 because I was in a great deal of pain. After I retired, the pain lessened tremendously. I occasionally need one 'pain' pill instead of six, but most of the time, I can stop whatever I'm doing to cause the pain and I get relief. I could probably manage the rest of my life like this.

My curve has been progressing 1-2 degrees a year since my mid-40's. it's at 65 degrees. My doctor said if I 'do nothing', eventually my bottom rib will fuse to my hip. I'm 59 & he thinks surgery now would be less risky than waiting til my late 60's. all this sounded logical, but with many thanks to this forum, I'll be seeking a second opinion.

susancook
08-11-2013, 11:14 PM
There is some truth to the fact that aging increases your risk for surgery. Some risk factors that make us older folks more at risk are cardiovascular status, type 2 diabetes, and osteoporosis.

What is your bone density?

There is probably very little increase in risk for the next couple of years unless you have medical problems. Take your time to get into shape and do your homework.

Good luck! I am trying to find the answer to your question that you sent to me.
Susan