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JamieAnn
04-29-2010, 03:47 PM
I recently posted about my surgeon (Dr. Errico in NYC) recommending (or shall I say "suggesting") surgery. Again my "specs" are 46 degree curve, 29 years old, my curve was 32 degrees in my teens when I stopped wearing the brace, so there is obvious progression. His opinion 0was that it would most likely continue to progress.

I got a good feeling from him in that he was confident and comfortable. He had one of his patients call me that day which was great. And I bought a book about surgery and have been doing a lot thinking.

I'm now 90% sure I want to go through with it, but I feel like I want to talk to Dr. Errico again to go over my records in more detail, compare past xrays, talk about what vertebrae he would fuse, and just in general get a more comfortable and confident feeling about this surgery. I had to set up another appointment with him to have this conversation, which is 6/3.

What have others done to make the final decision? I guess I am wondering is this a normal thing to set up another consultation with the same Doctor I just met with a month ago? Can I be doing anything else to make this decision?

Any advice or info is appreciated!!

Nitram
04-29-2010, 05:42 PM
For me to finalize my decision I got a 2nd opinion and read every piece of information I could get my hands on. When the 2nd doctor said basically the same thing as my surgeon, and everything I read pointed in the same direction, I accepted my fate and scheduled the surgery.

I'm 6 weeks post op and am thilled with the results. My advice to you would be to make an informed decision and don't look back. The first few days post op are tough, but you will be amazed at how resilient our bodies are and how quickly you'll adjust.

Rich

jrnyc
04-29-2010, 06:20 PM
Hi JamieAnn
are you in pain? are your lungs or heart suffering from the curve?
you are relatively young...do you have any other problems with your back besides the scoliosis?

i agree with Rich about a 2nd or even 3rd opinion...and reading as much information as you can....

how many doctors have you seen so far?

jess

LindaRacine
04-29-2010, 06:33 PM
Hi Jamieann....

I made up a little quiz to help people think critically about scoliosis surgery. Hope it might help you.

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

Regards,
Linda

rohrer01
04-29-2010, 07:00 PM
I also have a 46* progressive curve. My doctor won't touch it even though I am in a great deal of pain. Different doctors, have different opinions. I hope this helps you think about which ever decision you make. I am in pain, so I wish my doctor would do it, but he insists it will make it worse, pain wise. I don't think you are out of order requesting to talk to him again. Once it is done, you can't go back.

rohrer01
04-29-2010, 07:18 PM
Hi Jamieann....

I made up a little quiz to help people think critically about scoliosis surgery. Hope it might help you.

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

Regards,
Linda

I took your quiz. It came out 17:5 in favor of surgery. My lowest cobb angle at about 17 years old was 36* and now I'm at 46*. Maybe I should get a second opinion...:confused:

debbei
04-29-2010, 07:26 PM
I took your quiz. It came out 17:5 in favor of surgery. My lowest cobb angle at about 17 years old was 36* and now I'm at 46*. Maybe I should get a second opinion...:confused:

Of course you should get a second, and even a third opinion. This surgery isn't something you go into lightly, but of course you know that. Even if you totally trust this doctor, other docs might have differing opinions on the fusion levels, the approach, etc. And if you feel that you want another consultation with a dr, just call to make an appointment. You are trying to decide if you should put your life in his hands--you want to get all your questions answered.

What did it for me was the pain. I went happily along for years not knowing that I was progressing because I had no pain.

Good luck,

jrnyc
04-29-2010, 07:36 PM
rohr
absolutely..2nd opinion...and 3rd and maybe even 4th...years ago, insurance companies REQUIRED 2nd opinions before they would agree to cover a surgery...any surgery!

you want to know if other surgeons would use the same approach, fuse the same area(s), do the incisions in the same places...and can you have minimal invasive or not...? i mean, Dr Anand thinks everyone can!!

please...it is really important to go to several surgeons...and i cant imagine an insurance company not allowing that!!

jess

JamieAnn
04-29-2010, 07:57 PM
Thank you everyone - all of this feedback really helps.

Well, I did see another specialists (Dr. Schwab, also in NYC) and he basically said he anticipates this will continue to get worse and to come back in 2 years. When 2 years came up, my insurance had changed and that's when I went to Dr. Errico. So I had 2 opinions and both said it would continue to get worse. Dr. Schwab casually mentioned surgery but didn't really "suggest" it as anything to do in the immediate future. More like eventually it might be a decision to make.

I took the quiz and ended up with a 13/3. The quiz focuses heavily on pain - I do not by any means have debilitating pain, but I have very frequent "annoying" pain that I work around. But if my curve is going to get worse isn't pain only one of the reasons to get surgery? I just don't want this to keep worsening from both a pain standpoint and a cosmetic standpoint.

I think my biggest fear is creating more problems by getting the surgery - pain and/or complications.

I guess my biggest question to the doctor will be how are you "sure" it will keep progressing based on experience obviously.

Thanks everyone :)

jrnyc
04-29-2010, 08:10 PM
Hi JamieAnn
No doctor can guarantee pain free results....they can say a patient will probably be in less pain after surgery...pain free is a goal, but not a guarantee...

you didnt say, so i am assuming that you dont have any heart or lung problems from your thoracic curve...some people get to that point, and it becomes a prime reason for surgery...

following a patient for years is one way of knowing how curves are progressing....my curves didnt bother me too much until i herniated discs...then all heck broke loose, and everything got worse fairly quickly!

best of luck in your decision
jess

RitaR
04-29-2010, 08:29 PM
I agree with Rich and whoever else has said the surgery was well worth it; although, the first few days make one wonder believe me. And, the postop course has its "bumps" along the way. I know we all get impatient and want to be "all well" sooner than our bodies are willing to go, but it is well worth it. Take it from one who was having significant problems breathing and the worst pain I have ever experienced preoperatively. If the curve is impinging on your heart and lungs, as mine was, that will help make up your mind for you. But, also, it has got to be a decision you are willing to live with and work for. It has got to be "your" decision and not someone elses. Because it is you who is going to have to do all the work recovery-wise. We all have suffered our bumps after the surgery with not being able to sleep, constipation and what have you - so not to go into the decision lightly. But, I had surgery Mar 1st and I'm already more than glad I did it. Best thing I have ever done for myself! And, I'm still in some pain and still have to lie down to rest from time to time, but I'm working on that.
My two cents...

Singer
04-30-2010, 06:45 AM
It took me over a year to gather the courage to decide to have surgery, and even then I second-guessed myself like crazy. Like you, I was afraid of creating more problems. It would have been so much easier if it were a life-and-death situation -- it has always floored me that such a huge surgery is considered "elective". It also would have been easier if I'd had a crystal ball and could have seen what I would be like in 10 or 15 years down the road.

In the end, it came down to getting multiple opinions, doing tons of reading, and getting a gut feeling. The evidence was stacked in favor of my back getting worse and worse over time, so I took the plunge. It hasn't been easy but it has been worth it.

rohrer01
04-30-2010, 06:57 AM
It took me over a year to gather the courage to decide to have surgery, and even then I second-guessed myself like crazy. Like you, I was afraid of creating more problems. It would have been so much easier if it were a life-and-death situation -- it has always floored me that such a huge surgery is considered "elective". It also would have been easier if I'd had a crystal ball and could have seen what I would be like in 10 or 15 years down the road.

In the end, it came down to getting multiple opinions, doing tons of reading, and getting a gut feeling. The evidence was stacked in favor of my back getting worse and worse over time, so I took the plunge. It hasn't been easy but it has been worth it.

Singer, those are some AWESOME surgical results!!!

gmw
04-30-2010, 07:20 AM
Thanks Linda for posting the site for the quiz. Very good questions.

Glenda

foofer
04-30-2010, 10:20 AM
JamieAnn,

When I was 31, I went to a scoli doc for the first time. My double curves were 43T and 46L. The surgeon told me they would not progress and I went on my merry way. For the next 15 years I dealt with occasional episodes of back pain, but nothing unmanageable-I raised 4 kids, worked, had adventures and troubles, lived life fully. When I was 46, my back started making these incredible noises (it's called crepitus and it no longer makes those noises). I had my own little 4th of July going on in my spine. So I found a good ortho back guy and now curves were 48T and 49L, so not a ton of progression. In the next 10 years, after being told that my curves WOULD progress, and I would need surgery, and to try to hold off as long as possible, my curves are now 64T and 65L, with degenerative changes. You asked on another thread why people would wait for surgery when they have progression, and sometimes it's in the nature of the journey and how we have been informed. Those 15 years were good ones, not without issues, but healthy ones. Now is a different story, and being still fully functional, I am looking into when can I "fit in" this massive surgery, and should I. The advances in technique have really changed the picture. I am very glad I did not have the surgery at a young age, but it was a different time in history, as it will be again in 15 years.

As everyone says, it is your own road with your own personal take. I gave you my scenario because there were some parallels with your age and curve measurements, and I still did well with it. Others have not been so fortunate. The good news is that you are lucky to live in a time where the info abounds on sites like this forum, and the surgery is so much better these days.

Good luck to you and look forward to hearing more from you....

jrnyc
04-30-2010, 01:18 PM
i swear that if i needed surgery down to the L3 level, i wouldve done it by now! instead, mine was to start at L4, though Dr Lonner just changed it, so apparently now, the side incision will be at L1..even higher...that doenst make me happy, but so be it! it is the fusion TO PELVIS that totally freaks me out, even now with the "minimal invasive " technique...every time i take a shower now, i imagine doing so but not being able to reach my back...shave my legs (in the shower), or reach other lower areas! :rolleyes: every time i sit up in bed, i imagine having to log roll...by the way, can any "pelvic people" tell me whether log rolling is required forever, or whether you can eventually bend from the hips enuf to sit up in bed when arising in the morning...???? :confused: every time i get in and out of my car now i imagine doing it with the rods in my back and screws in my pelvis!...every time i pick up my 10 pound angel puppy...i imagine...well, you get the idea...
i know that there are problems with thoracic surgery...heck, i've got a 42 degree thoracic curve now and there is no guarantee it wont need upward fusion extension one day...but i just see the post surgery problems as different with pelvic fixation...:eek:

jess

lray
04-30-2010, 02:58 PM
It took me over a year to gather the courage to decide to have surgery, and even then I second-guessed myself like crazy. Like you, I was afraid of creating more problems. It would have been so much easier if it were a life-and-death situation -- it has always floored me that such a huge surgery is considered "elective". It also would have been easier if I'd had a crystal ball and could have seen what I would be like in 10 or 15 years down the road.

In the end, it came down to getting multiple opinions, doing tons of reading, and getting a gut feeling. The evidence was stacked in favor of my back getting worse and worse over time, so I took the plunge. It hasn't been easy but it has been worth it.

I could have written those words myself! The only difference is, is that I haven't taken the plunge yet, I will in 5 months, but I hope I will will look back and say "it was worth it" as well.

ADMoul
04-30-2010, 04:07 PM
I agree with Chris about having that "gut" feeling about when it's the right thing to do and I was someone who thought they would never do this surgery. In my case, pain was the deciding factor and that I wanted a better quality of life than I was experiencing pre-op. The more accurate information you can gather, they better prepared you are to make the right decision. I knew the first Dr. I saw was not the right person and there were folks on this forum who pretty much said "You need to get that fixed, Find another Dr." So I did and I got it fixed and it was one of the best decisions I've ever made. Yes I'm still stiff and achey at times and my hip hurts and I know recovery is a long process, but I feel like a new person. Best of luck to you.

loves to skate
05-01-2010, 01:49 PM
i swear that if i needed surgery down to the L3 level, i wouldve done it by now! instead, mine was to start at L4, though Dr Lonner just changed it, so apparently now, the side incision will be at L1..even higher...that doenst make me happy, but so be it! it is the fusion TO PELVIS that totally freaks me out, even now with the "minimal invasive " technique...every time i take a shower now, i imagine doing so but not being able to reach my back...shave my legs (in the shower), or reach other lower areas! :rolleyes: every time i sit up in bed, i imagine having to log roll...by the way, can any "pelvic people" tell me whether log rolling is required forever, or whether you can eventually bend from the hips enuf to sit up in bed when arising in the morning...???? :confused: every time i get in and out of my car now i imagine doing it with the rods in my back and screws in my pelvis!...every time i pick up my 10 pound angel puppy...i imagine...well, you get the idea...
i know that there are problems with thoracic surgery...heck, i've got a 42 degree thoracic curve now and there is no guarantee it wont need upward fusion extension one day...but i just see the post surgery problems as different with pelvic fixation...:eek:

jess

Jess, I can sit up in bed without logrolling but I shouldn't. Logrolling puts much less stress on your entire back whether you need a fusion, don't need a fusion or have a fusion. What in your mind is so horrible about logrolling? People do sit ups as an exercise. Instead of doing sit ups, they should be doing crunches because they put much less stress on the lumbar spine and strengthen the abs just as well. Instead of squatting, we should be going down on one knee. We should all be learning how to take care of our backs and knees and all our joints because we all are aging.:eek: Is your thoracic curve structural or compensatory. My thoracic curve is almost nonexistent now after two years. It really amazed me when I saw my last x-rays.

debbei
05-01-2010, 02:06 PM
Sally is right, logrolling is no big deal. Sometimes I still do, other times I do not. It gets to be second nature.

jrnyc
05-01-2010, 03:11 PM
ummm...i didnt mean logrolling was awful...i just meant, to me, it sounds...effort intensive...and as if one could never, ever forget about their back being fused...i am always aware of my back now, as i am always in pain..it just varies in degree...last week, when it rained for 3 straight days in CT, i was on my knees in the shower, dissolved in surrender to it!
i was just wondering if one can ever, ever stop the log rolling and whether one ever, ever can stop being aware of their back, after fusion, for even a minute!!

that's all that was about....
jess

debbei
05-01-2010, 03:17 PM
ummm...i didnt mean logrolling was awful...i just meant, to me, it sounds...effort intensive...and as if one could never, ever forget about their back being fused...i am always aware of my back now, as i am always in pain..it just varies in degree...last week, when it rained for 3 straight days in CT, i was on my knees in the shower, dissolved in surrender to it!
i was just wondering if one can ever, ever stop the log rolling and whether one ever, ever can stop being aware of their back, after fusion, for even a minute!!

that's all that was about....
jess

It is not effort intensive at all. I was more aware of my back when I was in pain prior to surgery than I EVER am now.

naptown78
05-01-2010, 03:23 PM
ummm...i didnt mean logrolling was awful...i just meant, to me, it sounds...effort intensive...and as if one could never, ever forget about their back being fused...i am always aware of my back now, as i am always in pain..it just varies in degree...last week, when it rained for 3 straight days in CT, i was on my knees in the shower, dissolved in surrender to it!
i was just wondering if one can ever, ever stop the log rolling and whether one ever, ever can stop being aware of their back, after fusion, for even a minute!!

that's all that was about....
jess


Jess,
In general I don't think anyone can guarantee you this. Everyone has different outcomes from surgery. Some of us still have pain and stiffness after surgery, some have no pain at all. In my opinion, once a back patient, always a back patient...You will always have to take care of yourself knowing you have a "special back".

jrnyc
05-01-2010, 03:26 PM
ughhhhh...OK...thanks for the replies..i get it...too bad...in my idea of heaven, we all have straight backs and when we walk, we float just above the ground...no weight, no pain...ahhhhh....that would be great! :)

jess

DaveWolpert
05-01-2010, 06:02 PM
JamieAnn, I very much can relate to your situation. At age 30, my curve was 49 degrees, up from 36 after I wore a Milwaukee Brace for two years as a teenager. My curve was clearly progressing, though at a rate of less than one degree per year, and like you, I wasn’t in pain, per se, but my back was often uncomfortable and this got annoying.

There’s no right or wrong decision in terms of whether or when to have surgery in your case. I think the most important thing is to realize that time is on your side. You’re young, not experiencing pain, and your curve is still under 50 degrees. If you wait to have surgery in 5-10 years, your curve might be anywhere from 50-60 degrees but you will most likely still obtain a high level of correction and have a relatively quick recovery. There’s no “penalty” for waiting and monitoring your curve for a few more years and getting several additional opinions from surgeons.

In my case, I chose to go ahead with surgery at age 30 because I had recently lost my job (so had plenty of time to recover without worrying about getting back to work) and had excellent health insurance. Also, I just wanted to get it over with while I was still young, didn’t have a family, and was in great general health. Had any of these circumstances been different, I might have waited. Seven years later, I have no regrets.

I also want to acknowledge what others have said: there are no guarantees, either way. Your curve may or may not progress. You may or may not develop more back pain, whether or not you have surgery. You just can’t know. All you can do is make the best decisions you can, given the information you have—and trust your instincts!

JenniferG
05-01-2010, 06:16 PM
Jess, I haven't log-rolled since hospital. The nurses showed me how to do it then the doctor had a bar attached to the right hand side of the bed to pull myself upright. It was easy, mind you, I had kayaking muscles.:p So I don't remember ever log-rolling other than as an exercise to see what it was like.

Also, I think a lot less often about my rods than I ever did about my sore back. I'm sure when you've had your surgery, you will know what I mean.

JenniferG
05-01-2010, 06:20 PM
David! How lovely to meet you! Your book was a brilliant resource, pre-op. You were spot-on about so many aspects of this surgery. Thank you so much.

jrnyc
05-01-2010, 06:52 PM
Jen....thanks so much for the reply! it really helps to hear such positive comments from a "pelvic person"! :)

David...so nice to see you on this forum! wonderful book! informative and helpful...i'm so glad you gave your opinion to JamieAnn...

JamieAnn...i so much agree with David Wolpert...there is a chance you could end up in pain after the surgery! and you have time to see what happens because you are young...it is a major major operation!! and no guarantee what the results will be!

jess

LindaRacine
05-01-2010, 07:04 PM
Look who the cat dragged in! ;-)

Welcome back Dave.

Doodles
05-01-2010, 08:11 PM
JamieAnn--I hope all this information others provided is helpful for you.

David--Thanks for your wonderful book. It was one of my first steps in research which I reread before surgery. Had my husband do it too and he became a great caregiver. (I'm still a little surprised!) Janet

DaveWolpert
05-01-2010, 08:58 PM
Thanks for the kind words about the book, folks! :)

Linda: Yes, those crazy cats. Even though haven't posted here in a while, I do read these forums once in a while.

Vali
05-01-2010, 11:19 PM
David! How lovely to meet you! Your book was a brilliant resource, pre-op. You were spot-on about so many aspects of this surgery. Thank you so much.


David, I ditto JenniferGs' post. Brilliant piece of work! Hope you are still doing well. :)

rohrer01
05-01-2010, 11:27 PM
ummm...i didnt mean logrolling was awful...i just meant, to me, it sounds...effort intensive...and as if one could never, ever forget about their back being fused...i am always aware of my back now, as i am always in pain..it just varies in degree...last week, when it rained for 3 straight days in CT, i was on my knees in the shower, dissolved in surrender to it!
i was just wondering if one can ever, ever stop the log rolling and whether one ever, ever can stop being aware of their back, after fusion, for even a minute!!

that's all that was about....
jess

Just an FYI, I HAVE to log roll to get out of bed and I've never had the surgery. Not a big deal. You learn what works and you just do it automatically.

lray
05-02-2010, 12:42 PM
Thank YOU, Dave, for taking the time and effort to write your book. It has been so helpful, especially since it was written by someone who knows what it is like to have this problem, and not from a physician who just treats this problem.