How do you know when it's time for surgery?

[sweetness514]

Damned if you, damned if you don't

That's what I think constantly. My thoughts on surgery is to get it when you are in too much pain, and it affects your life, because at least there is a good chance to be better after, and having such a curve and pain associated with it is not a life anyways so I would take the leap, and that's what I HAD to do, even if I have had problems later on and am having surgery again, I had no choice.

[sue821]

Sweetness

Thank you for sharing ....those of us who haven't taken the leap yet need to hear just that. It's not a life with the pain...
Sue

[CHRIS WBS]

Sue,

I'm curious about something. As a patient of Dr. DeWald for 33 years, are you first now being recommended surgery? Were you being observed over all those years to see if and when your curvature progressed and advised alternative treatments? Are you experiencing symptoms now that you did not have in previous years?

As someone who has never been under the care of an orthopedist, this is all new to me. Over the years, doctors simply told me that nothing could be done for me.

Chris

[Irene]

Sue

Sue, Dr. Lenke is a doll... He's extremely professional... I think he did an excellent job on me... BUT... I'm disappointed that he told me that I'm the only one of his patients who complains so much. I can't believe that. I explained the "crushing" sensation I feel (a/k/a "suit of armor"!), and he told me that no other patient of his complained about that. I don't believe that either! I'm planning on meeting with Dr. Bridwell next year. We'll see what he has to say!

[Brendalee]

Brendalee

Spinewhine,

I live in Westland, Michigan. After hearing a few people recommend Dr. Montgomery at Beaumont I think I may try and see him for my next checkup, and 3rd opinion.

I also know of a women at work who's husband had spine surgery with him.
Not for scoliosis, but had a fusion. She really likes him.

I'm waiting a while longer to see if there has been any more progression.

I'm curious as to why some Doctor's recommend surgery with curves less than
mine, but the two Drs I saw say wait and see when my curves are quite severe?

Sometimes I feel I really want the surgery so I feel better about myself and the way I look. Even though they tell you not to make your decision on looks,
but your pain and quality of life you have.

How long do they want you to wait?
I'm 44, do I wait until I'm older and in more pain?

It can be quite frustrating at time.

Brenda

[Brendalee]

Brendalee

Spinewhine,

Me again. Also wondering what made your decision to have surgery with
Dr. Montgomery, and what was his opinion when you first saw him?

Regards,
Brenda

[SpineWhine]

Brenda -

ASk all the questions you want! I know asking questions really helped me weigh through my own thoughts and feeling, and am glad if I am able to help somebody else do the same.

I chose Dr. Montgomer for a variety of reasons:
1. His affiliation with SRS, his educational background and experience in dealing with scoliosis.
2. His affiliation with Beaumont, which I believe to be the top hosptial for orthopedic surgery in Michigan. (among other things)
3. Reputation with representatives from DePuy Spine. (My husband is a laparoscopic rep for Ethicon, a division of J & J. DePuy is another J & J division that makes instrumentation and what not. The guys who work there have first hand knowledge of who they think are the top surgeons. Whne my husband asked, they said "If it were my wife, I would have Montgomery do it, hands down." So since they see lots of spinal surgeons at work, I trust that they know who does and does not do a good job.
4. I was comfortable with him when I had my office visit, and felt he was thorough and understanding, and thought that he listened well. So, personally I feel safe that he will do a good job.
5. He is in network for me insurance wise- which means insurance will cover more of the costs than if I went out of network.

Make sense??

[sweetness514]

Sue, Dr. Lenke is a doll... He's extremely professional... I think he did an excellent job on me... BUT... I'm disappointed that he told me that I'm the only one of his patients who complains so much. I can't believe that. I explained the "crushing" sensation I feel (a/k/a "suit of armor"!), and he told me that no other patient of his complained about that. I don't believe that either! I'm planning on meeting with Dr. Bridwell next year. We'll see what he has to say!

Irene...

I think so many doctors and orthos say that to patients, as far as pain and "complaning" goes. You know when we get an appointment and we have so many different questions and pains to be adressed, we sometimes forget everything we have to say or don't always explain it as well as you might have like when you described the suit of armor(I wouldn't have thought about it like that). I remember going in for my appointment 1 month post op and the secretary gave me this attitude and said "how are you doing? I'm SURE you're 100% better now" and didn't even want to know my answer and made me feel like a whiner, just like my ortho did with me and other patients who were there. But as I did some research and reached a lot of scoliosis patients who had surgery done, we all described the same type of pains and recovery was pretty long for all of them. I do agree that what your ortho said was not the most diplomatic thing to be said though

[LindaRacine]

Irene...

I think so many doctors and orthos say that to patients, as far as pain and "complaning" goes. You know when we get an appointment and we have so many different questions and pains to be adressed, we sometimes forget everything we have to say or don't always explain it as well as you might have

You make an interesting point, and one which I've thought about a lot of late. I had an appointment with my specialist some months ago. Afterward, I found myself sort of confused, and realized that I was not as focused as I should have been. I see it a lot with others, and was really surprised when it happened to me. I have an appointment for a second opinion next Monday, and I spent several hours one day, making up a list of 5 questions/concerns to be addressed. It was a really helpful exercise, and I hope it will help me get the most out of the appointment.

--Linda

[Irene]

You're all correct!

I agree 100 percent... Thank God for this Forum... because my surgeon had me convinced that I was a real "baby"... I'm so thankful to have found out that I'm not the only one who "complains" from post-op instrumentation insertion. Thanks to all of you for letting me know I'm not insane!

[sue821]

Chris

Yes, I have been being observed all these years, but I was not progressing...basically staying fairly steady throughout all that time. In the past 5 years or so I started experiencing pain and that has become worse year by year. I was not recommended surgery up to this point because I was on the border with the largest curve holding around 50+.

[sue821]

My Appointment with Dr. Bridwell

I went to see Dr. Bridwell on Friday and once again I am still right on the edge. I think the team that they have in place is much better than I experienced in Chicago and they were much more accurate with the x-ray measurements...and with explanations. To my surprise, I actually have three curves, 35, 58 and 43 (top to bottom). And...I have disk subloxation in the lower curve which is actually causing most of my lower back and hip pain. So...he said that if I were his "baby sister" he would not advise surgery unless I could NOT go any more than 5 minutes walking without debilitating pain. The surgery would be a total fusion and of course he kept repeating a very large and long surgery, not to mention the long fusion. He would like to see x-rays from 10-15 years ago to compare, but suggested swimming, strengthening exercises, walking...keep healthy and strong...keep watching the progress.

I respect that he didn't want to make the leap even though he is a surgeon, but I am trying to get my head around the fact that I am to deal with the pain and how. Yikes! I am disappointed, but no one has the crystal ball!

[sweetness514]

Sue, have you seen many opinions?

I'm sometimes baffled by how orthos recommend surgery for some and not for others. I know a woman who has lumbar scoliosis and was told when she was younger that she had to get surgery or she would end up paralyzed and not able to have kids. Well she is walking, keeping healthy and for the most part pain free by working out and has had kids. But you being in pain would make me think you need surgery. I'm sorry for your confusion, it's not easy I know.

[Irene]

Wow, Sue ~ What you said really surprises me and all I can say is please go back every year to see either Dr. Bridwell or Dr. Lenke for a "check" on your current information. When I was your age, I decided AGAINST surgery, even though I was told I needed it. Considering how I am today and how I was in my early 40's, I'm glad I put it off until age 56. Just Keep getting examined yearly and make sure you get another opinion some where else. Blessings.....

[sue821]

Sweetness and Irene

Oh, thank you both so very much for your reponses...it helps a lot!! I think in my case, if I just had the one curve it would be an easy fix, but being on the border with the largest curve being 56 and not being able to fix just that one...he just felt that it was too big of a surgery because it would have to be all three if he did any. I think what will probably get me before anything is going to be the lower curve where the vertebre is actually slipping out of place. Now to just get my head in gear to make the exercise priority above other things..and to be honest, I am just not a big fan of going to the gym after work. Ick. Geezzeee...I am too old for this! I will indeed go at least once a year to check the progress.

Irene....why do you say that you are glad that you waited until age 56? I guess time is on our side with new technologies.

Thanks again,
Sue