19 Year Old Male. Scoliosis Progressing.

[mabeckoff]

John,

I do think that you should have all your questions answered. Before my surgeries ,during my hospital and rehab stays and now afterward. Dr Bederman has
answered every question that I have. We discussed things together. I think ,that you need to find something to do for the next several weeks.

[JDM555]

So, what may seem like an innocent inquiry can turn into a situation where you're an unknowing guinea pig.

To be honest, if a surgeon picks a metal he doesn't use or feel comfortable working with to the point where I become an experiment, then I don't think that person should be a surgeon. Just like patients ask questions, surgeons, at least competent surgeons, reply with answers. If my surgeon does whatever I'm asking him to do just because I say so, then that isn't a surgeon I'd want to cut me up. Many patients ask questions, and doctors give opinions, that's all I'm doing, I want his opinion. Again, for the last time, I'm not forcing him to use anything, I'm simply being curious.

[JDM555]

John,

I do think that you should have all your questions answered. Before my surgeries ,during my hospital and rehab stays and now afterward. Dr Bederman has
answered every question that I have. We discussed things together. I think ,that you need to find something to do for the next several weeks.

I've been in contact with Dr. Bederman, he's a great surgeon. He answers all my questions on a daily basis and he states his opinion, like a good surgeon should. My local surgeon is also great, and he would gladly explain why he uses titanium. If it wasn't for all my questions, I'd either be having an XLIF or extending hardware down to L4. So, by researching and asking questions, I think it's helped me out in the long run.

And thanks Melissa for telling me about Bederman, hands down one of the nicest and most caring surgeons I've ever talked to. I can't believe he asked you about me a month after emailing him, that's amazing.

[jrnyc]

i agree with you, John

if a surgeon is not comfortable using a specific metal, i am sure any doctor with
ethics would explain that to a patient...
so that patient could not end up being a test case....
and i agree that any surgeon who makes a patient into a test case isn't a surgeon
i would want operating on me!
you will have to live with the results...
it is your body being cut open!
ask away! how else to go into the OR with peace of mind or confidence....?
only after all questions have been answered sufficiently, to your satisfaction...
and all has been openly discussed with your surgeon...
then you will rest easy when the anesthesia begins!

jess

[JDM555]

Yup. Surgeon was very honest with me, I just wish I had asked him during the appointment last monday. I just realized about vitallium, which is why I thought I would ask on the forum. I don't think it would affect his confidence in the least. What many people have to understand, is being so young, and having been opened twice, and having no relief, is not something you just forget about. I'll do whatever is in my power to prevent the next few years of my youth to be wasted, because I really can't take it anymore. Why make the same mistake of not asking any questions and jumping in headfirst again?

[LindaRacine]

Sorry, didn't mean to make you defensive. In my opinion, many questions are great. Some just aren't. Again, just my opinion. I would personally be really concerned if I were getting ready to have surgery, asked my surgeon a question about some technique, and the surgeon decided to change the plan based on that question.

[JDM555]

Sorry, didn't mean to make you defensive. In my opinion, many questions are great. Some just aren't. Again, just my opinion. I would personally be really concerned if I were getting ready to have surgery, asked my surgeon a question about some technique, and the surgeon decided to change the plan based on that question.

Not defensive, just tired of living in pain and then being looked down on for asking questions regarding my upcoming surgeries on a scoliosis forum. It's OK, like you say, everyone has their opinions, but I'll keep these questions to my surgeon, because his opinion is the only opinion I care about.

[LindaRacine]

i agree with you, John

if a surgeon is not comfortable using a specific metal, i am sure any doctor with
ethics would explain that to a patient...
so that patient could not end up being a test case....
and i agree that any surgeon who makes a patient into a test case isn't a surgeon
i would want operating on me!
you will have to live with the results...
it is your body being cut open!
ask away! how else to go into the OR with peace of mind or confidence....?
only after all questions have been answered sufficiently, to your satisfaction...
and all has been openly discussed with your surgeon...
then you will rest easy when the anesthesia begins!

jess

Jess...

As I mentioned above, I've heard of several massive failures when surgeons were influenced to use a technique that wasn't the surgeon's norm. In general, I think surgeons like their patients to be involved in the process of treatment planning. Scoliosis surgery is very much an art. There's no one perfect way to do anything. So, if a patient voices an opinion about a specific procedure, I think that often results in an impact on the treatment plan. As a patient, and someone who has met hundreds of patients who have had scoliosis surgery, I truly, truly feel that I picked the best surgeons, and that those surgeons would select the procedures that they feel would lead to the best chance at a good outcome. I can guarantee that if I had asked them something like "can we do this all from the back, instead of from the front and the back", that they would have figured out a way to do it all from the back, unless they were relatively certain that it would result in a bad outcome. But, as much as I read about scoliosis surgery, I know I'll never know anywhere near as much as the doctors who specialize in the disease.

Interestingly, I actually had a conversation at the SRS meeting a few weeks ago. with a surgeon I think you've met (and liked), about this very subject. We sat next to one another at an informal dinner, so we had a relatively long conversation. In that case, we were talking specifically about minimally invasive procedures, but it evolved into some observations about patient influence.

Regards,
Linda

[titaniumed]

Its 4am and I missed out on all the chatter here!

Some great points have been made and I agree with Linda on not influencing a decision on any selection of hardware OR procedure. The one thing that happened with my surgeon was the fact that he thought about my case for 2 1/2 years, and yes, he changed his mind in the end, not because of anything I said. I might have frowned a little on the anterior, but told him that I wanted it done all in one shot and didn’t want to come back in the future. I know he talked to all his surgeon friends about my case. Its great that all these surgeons brainstorm cases together, they get ideas from one another. Hardware selection was not on my mind, it was the difficult procedure, the anterior partial corpectomies from L1-S1. Half of my vertebrae on each level was removed from the front and I was scared to death, that’s why it took 2 1/2 years for me to set a date. Pain control was difficult. In the end, it was the right move, it worked well.

There was quite a bit of experimentation on scoliosis hardware and techniques through the years. The people that suffered with scoliosis many years ago really had to endure heartache. We are fortunate that we are not in communist Poland in the 60’s , having coil springs installed. In the book “The Sands of Berck”, the largest scoliosis center in Europe(If not the world) was in Berck, France. The patients exercised(in casts) on the beach during their long recoveries. Scoliosis is not an easy thing to deal with, each case is different, and requires its own artist, because it truly is an art, that involves science.

I wonder how the Sistine chapel would have turned out if Michelangelo were told to use a roller? Hmmm....
http://en.wikipedia.org/wiki/The_Las...(Michelangelo)
Ed

[jrnyc]

i am only suggesting asking...asking why one and not another...
i am not suggesting demanding or insisting...
i would want to understand the procedures and the whys and wherefores...
trusting a surgeon, i think, does not mean not asking
i would always defer to the doctor's knowledge...
but that would not, and does not, stop me from asking questions...

maybe because i was sick for years without a diagnosis, i don't have the faith
in doctors some people have...
granted it was an infectious illness and didn't require surgery...
but i also witnessed how my mother was treated...and mistreated...with a brain
tumor in the 80's...that was the first thing that shook my faith....
and the surgery...at a top NYC hospital...went fine, or so the surgeon told us....
it was just that the patient died..but the surgery went great

everyone has the need and the right to ask the questions that they need answered
to reassure them before they go into the OR...
i would never want a surgeon so easily influenced ...by me!

jess

[LindaRacine]

Wish I could put you all behind a 2-way mirror while a patient had this type of conversation with their surgeon.

As I've said over and over, I think it's important to ask questions. But, when we get involved in asking a question in the format of "why this instead of that", I think we effect the way the surgeon makes their surgical plan, especially when we make an observation like "I heard that Dr. Perfect does it this way". Perhaps the way to ask such a question is something like "I trust you, and absolutely do not want to affect your plan for my surgery, but can you tell me why you usually use/do (fill in the blank). It's human for surgeons to want the best possible outcomes in their patients, so they use what has worked the best for them in the past. That doesn't mean that the new/different method isn't valid, but the new/different method could easily take the surgeon out of their comfort zone.

--Linda

[judyat60]

I agree Linda, that it's important to respect knowledge while still asking all your questions. I also feel that there is probably not only one way to a solution. I had 4 opinions, two with highly regarded drs from this forum, and both of them would have approached my upcoming surgery differently although the amount of fusion necessary was always consistent: one would do anterior and posterior over 2 days; the other posterior only (reaching around to do the anterior without the second incision) in 8 hours. I chose the second dr more because I did not like the office attitude of the first dr, although I think he is a fine, fine surgeon.

For me this is a totally new experience, I don't quickly go to drs, don't like hospitals, don't trust them, and my kids will tell you I can be frustrating with all the 'what abouts' in any decision I make. However, I also tend to play the odds and always put myself in the success category, that is a mental proclivity. But I am one and a half weeks away and feel resolved in 'putting myself in his hands' on the day of surgery.

In the end, I think there are a number of doctors who are highly skilled, competent and knowledgeable, and their experience shows this. It is interesting that the doctor who gave me the most information and best explanations of my situation was the first I was sent to by my GP; however, his 'office' only did about 30 surgeries a year, and for me, living close to NYC with some of the best, it was a no brainer to seek one of 'the best'. (and it was this forum who led me through this decision! thank you)
and thank you Linda, for a way to approach these discussions with the doctor. I too don't want to tie their hands, but always have questions.

Making the decision to have the surgery and with who can be very difficult...
Judy

[mabeckoff]

John, I tried to PM you back and your mailbox is full

Melissa

[Elisa]

It's now November... ten days to go John! How are you doing?

[JDM555]

It's now November... ten days to go John! How are you doing?

Hey. I'm doing good. Time is flying by, which is good. I want to get this surgery over with. I met up with anesthesiologist yesterday with my father and we covered a lot. Went over some paperwork and yadda yadda. Then tomorrow I got a final appointment with my surgeon, ask all last questions on my mind, and then go to the hospital after and do my pre-admission test. Some bloodwork, chest X-Ray, and more paperwork and then just wait another week or so, and I'll be going under for surgery.

Will let you know how it goes tomorrow afternoon.