Help in the decision for surgery

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]

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]

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]

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]

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]

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...

[debbei]

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...

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]

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]

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]

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]

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]

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]

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]

Thanks Linda for posting the site for the quiz. Very good questions.

Glenda

[foofer]

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....