How many docs to see?

[nybw51mr42]

Well, I can't believe it has basically been three years since I started this thread. I wanted to update you guys on my situation, and selfishly get some more input on you guys. Since I started this thread, and to carry from where I left off:

My physical abilities are pretty much the same as indicated in the first post, despite being 3 years older. The only difference is I lost another 1.5-2" in height (crazy isn't it!?) and my lumbar curve is 65 degrees as of this Wednesday. Pain levels are the same, as are the activities I can engage in. I did end up seeing Dr. Hu in 2012 and while I liked her, I decided to try and schedule my surgery with Dr. Bederman. I had planned on doing it at the end of 2012 - however the insurance approval never came through and I dropped it for a bit of time.

But I kept it in the back of my mind and now I've also seen a few other doctors. I saw Dr. Daubs (2013), Dr. Lonner (2014) and this week finally Dr. Lenke (2015 obviously). Most have pretty much told me the same thing, varying on a level or two on the location of the fusion. Aside from Pashman, it varies from T10-11, and L4-L5. The one variable however was the time of the surgery. Bederman said it would be a two-day surgery if I recall correctly with two entry points, all the way to Lenke saying it was 3-4 hours with entry from the back. While I base this on really nothing other than the surgery time, I am happy I never went through it with Dr. Bederman. Why do a two-day two-entry surgery when I can do one?

Anyway, I liked Lonner a lot, but after seeing Dr. Lenke I figure I may as well go with him if I'm going to go forward with this, since he is what I guess is the best at this surgery. (Right?) Plus, I did feel comfortable with him, he seems to have developed some of the tech being used today, and does a ton of these surgeries. All docs have said I need to do the surgery at some point, but I can probably buy a few years if I wanted to. Lenke would do T11-L4.

So the question now becomes, when should I do the surgery.. I'm leaning towards sooner rather than later, because of the progression of my curve and loss of height. However, I have some random thoughts/questions if anyone wants to chime in:

- Reading a lot of these threads on here has me worried. Seems a lot of people are having complications, random pains and aches they didn't have before, and much longer recovery time. Lenke told me I could be swimming in a month and in 6 months be doing everything I was before. Does that seem right?

- Is there any concern that Lenke is more of an academic than practicalist? I was a little taken aback that 7 doctors came in the room with me. I felt slightly like a case study more than an actual patient. But maybe that is better, I don't know.

- Is there any advantage to waiting? The only things I can think of are 1) better tech in the future, or 2) if I'm worse off than before, I would have delayed that from happening.

Thanks all, as always very appreciated.

[LindaRacine]

I think you're going to have a hard time getting a date from Lenke for awhile. He's moving to Columbia University in NY.

--Linda

[Lizardacres]

I don't think there is any magic number of docs you should interview before making a decision. I think making a decision has more to do with feeling you have all your questions answered to your satisfaction and that the answers that you receive make sense based on your specific curve and the research you have done. During these pre-op visits, you and the physician are sizing each other up and the physician is selling himself to you as well. If one tells you things that sound overly optimistic, I would consider that a negative.

If you have more questions, after your visits, make another appt with the same doc. You want to have all the information you want before scheduling your surgery. I think that as you speak with the surgeons you are considering, your gut will tell you what to do. If you can't decide, either wait a while or visit more docs. You want to be completely comfortable with your decision.

As you are losing a lot of height, it sounds like this surgery is probably in your future, but given your age, you have plenty of time to decide. Good luck!

[Lizardacres]

I wanted to add a couple of things based on your questions; one of the docs I saw when I was interviewing them was at a large teaching hospital and at the last visit, he had his fellow (resident) answer my questions without being in the room himself. When I asked who would actually be doing the surgery, he hedged his answer and said it was a team effort and everybody had their part to do. When you have your surgery done at a teaching hospital and your surgeon is followed around by residents, you can't really be sure who will be doing what during the surgery. On the plus side, they do work together as a team, on the minus side, you will have some less experienced persons doing parts of your surgery. This really bothered me and I ended up not having my surgery done by an attending of an ortho program even though the attending promised me he would be there 'skin to skin'. My other concerns were that surgery takes longer when done by less experienced persons, which leads to a higher infection rates, more blood loss and there are more people in the OR. I ended up only needing 2 units of blood and I had both anterior and posterior surgery with osteotomies and fusion from T3 to L5 with pelvic fixation. I went with somebody in private practice who is a member of the SRS and I am really pleased with the outcome.

I'm only 5 weeks postop at this point so there is still time for things to go wrong, but ALL of the pain I had preop is gone. I don't have the board nailed to the butt feeling but it did take a while before I could sit comfortably for any length of time. Even now, after about an hour, I'm ready to lay down or change positions. I still have pain around the incision, in one spot in particular maybe around T6 that is quite sharp, but I am far from healed and my incision on the back still has scabs. The first 3 weeks post op were pretty miserable, but I am glad I did this.

[LindaRacine]

I've never heard of a scoliosis surgery with only one person doing the surgery, so I think someone is always there to help. That help might range from things like retracting and suctioning, to doing all the screws on one side. If you have your surgery done in a university setting, there is a high likelihood that a resident or fellow will be helping out. If you're in a private practice, there might be a visiting resident or a physician's assistant. I know of at least one highly respected surgeon who uses his physician's assistant for all of his surgeries. Most insurance companies will not pay for two attending surgeons unless the surgery is deemed super complex (like it includes a pedicle subtraction osteotomy, vertebral column resection, etc.).

--Linda

[Lizardacres]

Not sure of your comment is intended for me but my surgeon worked with a vascular surgeon for the ALIF and his PA for the Posterior fusion; not to mention the person doing the neuro monitoring, the cell saver tech and the rest of the OR staff. The PA is part of his office staff and assists with all his surgeries.

At a teaching hospital, the residents all receive a salary from the hospital and are allowed to perform any part of a surgery permitted by their attending in their residency program. An attending can have residents performing surgery in more than one OR at a time and move between the OR's to supervise them as needed. It's how the residents learn. They have to perform a lot of surgery before they complete their residency programs and move into practice.

[LindaRacine]

Not intended for anyone specific. I was just making a point that there's a high likelihood of someone other than one's surgeon doing part of their surgery, regardless of where the surgery takes place.

[green m&m]

I was in somewhat similar situation as you were before I had my fusion done.

We are probably the same age -- I didn't have severe debilitating pain with my curve (low left thoracic) but there was progression of a degree or two every year. I was active and could do most things, except maybe carry very heavy items because I could feel bone-on-bone grinding on the concave side of my curve if I carried anything over 30lbs. I didn't loose as much height as you did -- partially because I'm very short to begin with 5'1.25 (the .25 matters when you are my height!) at full grown height and 5' .5 before surgery.

If I had more definitive option to wait, I would have waited but my other medical needs directed my decision to go ahead with the fusion while I was in the 'clear.' (Long story -- I don't want to bore you with a lengthy post)


Since Lenke is moving to Columbia Univ. that gives you a logistical 'breathing room' of sorts.


There will be technical advances for sure -- we don't know when and how and for all we know the next breakthrough may be to many years away for your wait to be 'worth' it.


I will say I'm glad I had the surgery done, despite my wish to wait longer. I don't have any of the discomfort or pain I had prior to surgery. My left shoulder pain which was partially due to the curve (and also due to just weakened rotator cuff) is basically gone. There are days where I stop myself and think, "Oh.. right, this action used to hurt and now it doesn't, and hasn't since surgery! I didn't even notice!"

Also, I'm pretty sure if I didn't have the surgery last year I'd have put the surgery off until I was 40 something and I'd imagine recovery is harder at 40 something vs 30 something.

I returned to work at 3 months, which was actually 3 months from the day of surgery, not when I left the hospital. At around 6 week mark I had no problem navigating around NYC via. public transit and riding in cabs with all the sudden lane switches, quick stops ect. I just happened to have two other doc visits besides follow up with my ortho and had to do one of those visits by myself due to logistics and was totally ok.

I'm at a little over 5 months now and feel pretty much back to normal. For me I think 2.5 month mark was when things really changed and I felt better. Prior to that I had lots of pain in my rhomboids that made doing anything with my arms difficult (but little spinal pain oddly enough). That is totally gone now, thanks to my PT helping out a lot with strengthening and retraining the rhomboids to work with my new spine.

If you are going with Lenke, I'd wait until he's 'settled in' at Columbia. It'll take some time for him to really be meshing well with his new OR team, ect. So honestly if I was in your shoes and plan on scheduling a date with him at Columbia Univ. I'd pick a date maybe 4 - 6 months after his switch.

And to give you a little insight on what it's like to 'follow' a doctor to a new hospital. One of my docs switched from Cornell-NYP to NYU last October -- I'm JUST getting to see him at his new office next week. It took all that time for him to get settled in his new role and for his office to get re-contracted with all the insurance companies at the new location. Some insurance companies re-negotiated quicker, but mine took until this February to sign him back up.

Hope this helps!

[nybw51mr42]

@Linda - thank you for that clarification, it does make sense to have more than one doc doing the surgery.

@green m&m - this post was very helpful and it does relate to me substantially as I am now in NYC and also with the hopsital move. I thought the same thing as you also, to wait until he gets settled in. I don't want to be his first surgery so to speak at a new place.

[ksmom0611]

I just had surgery 4 weeks ago with Doctor Lonner. I think he performed some kind of miracle since he reduced my curves by about 65%. He is a nice guy, though I'm a little frustrated with the follow up attention since discharge. I'm 42 and glad I put off the surgery despite years of pain and agony. I know that sounds strange, but I had to get to a point in my head that having the surgery was my only choice. It's a lot to go through but knowing there really was no other choice has helped me with my decision. I think you have to get to that place in your head in order to make this decision.

[green m&m]

Going to add -- regarding traveling around in the city. I did not attempt taking the subway by myself until at around 3 months. I was afraid of crowd pushing me around since I was traveling during peak times.

I was OK on NJ transit though which did require some navigating around crowds -- but I took my cane in even though I didn't need it because it gives you a small invisible bubble around you and people are generally nicer and more careful if the see you have a cane.

[nybw51mr42]

I went and saw Dr. Lenke again now that he is settled in at Columbia. Despite already seeing him before and having my questions answered, this time it put me at a bit more peace for some reason. He mentioned he really likes the new hospital, he brought his OR nurse with him, and my surgery for him would be a difficulty of a 1.5 on a 1-10 scale, which for whatever reason made me feel a lot more comfortable.

Unfortunately, in the 8 months since my last visit my curve has increased by 6 degrees. Kind of outrageous. Even though I know there are margins of error in measuring I could see the slight progression with my own eyes and Lenke commented on it before it was even measured. So that's not good.

I can't believe it's been so many years, and I keep putting it off every year, but I think I'm going to go ahead with it next year at some point. Just trying to decide the right time. I may just do it next fall so at least while I'm recovering I can watch many many hours of football to pass the time.

[golfnut]

I have so much faith in Dr. Lenke's skills as an SRS surgeon. While it's not great that there are often several Drs. with him at appointments, it was worth it because I know that he is one of the best in the country and that he is current with the best procedures for the surgery. It's hard to set a date because there is no perfect time. My surgery was Jan. 5 and I had to walk boring laps in our small house due to snow and ice outside, but I didn't want to miss the holiday celebrations with my family in November and December. My most stressful time was prior to my surgery with worrying about the unknowns. Best of luck with setting a date and putting this difficult time behind you.