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nybw51mr42
01-20-2012, 11:39 AM
Hello all, I'm a new member and have been following this board for a few months now. Incredibly helpful information and thanks to everyone who contributes - hopefully I can do the same as I go through the process.

So I'm trying to figure out what to do. I'm 31 now and live in Orange County, CA. In 2000, I was first diagnosed with scoliosis with a 40 degree lumbar curve. Fast forward to 2007, and it was then at like 54 or so. Every two years or so it goes up a few degrees, and now I'm at 58 or so. My ortho recommended I see a spine surgeon and consider surgery. So I went to the random doctor in my HMO, who was a spine surgeon and he recommended it. Obviously having a knowledgeable and reputable doctor is the #1 priority, so even though it's been an incredible hassle through my HMO I've managed to see three doctors now, although as indicated below not all were necessarily surgeons I'd consider.

Doctors

1. First doc in my group, Dr. Richard Lee, not much information about him and he was ready to the surgery. He just said to do 3 months of core exercise physical therapy to get my back/stomach ready to handle the surgery and aid in recovery.
2. Second doc came recommended as a top spine doctor, Dr. Jeffrey Wang at UCLA. Saw him, incredibly nice and took a lot of time with me, but he doesn't do surgeries. He said he refers people like me out to Dr. Bederman at UCI or Dr. Hu in SF. He said before Bederman came to OC, he would send everyone to Dr. Hu but now that he's seen Dr. Bederman's work he is more than comfortable sending patients to him to do the surgeries for people local to southern California.
3. Third was Dr. Bederman. Talk about not your usual doctor. He spent almost 90 minutes with me explaining every little thing and answering all my questions. He ordered a ton of testing (Dr. Lee did not), and I've done that and now just waiting for my insurance to authorize more visits.

So should I go see other doctors? I know Melissa on this board seems very fond of Bederman (right?). But no other reviews so to say on him. Also he is not listed on that SRS organizations list of doctors. From just general research I know Dr. Pashman is highly respected in LA, but some patients reviews have him as unfriendly, not caring. My uncle is the chief of radiology at a hospital in NY, and his spine surgeon there recommended I see Dr. Kamshad Raiszadeh in La Jolla. Both of these gentlemen are listed in the SRS, for whatever that is worth. Any thoughts?

The Surgery Itself

I really do not have that much pain. I exercise very hard 3-4x a week. I can run, play basketball, etc. I do get pain and I know it is because of my scoliosis, but it does not stop me from doing anything. Like after long walks, after basketball, after sitting for a while my back will always stiffen up and get painful, but it goes away. I do have a significant rib hump and my height has decreased almost an inch in the recent few years. So if the pain is manageable, but the curve is worsening and aesthetically I am getting worse, should I do the surgery? All the doctors say yes, including my two uncles who are radiologists, but I'm just worried given the severity of the operation that either something will go wrong or I'll just overall be worse than I am now. On the other hand, my height has decreased and I don't really want to be a quasimoto type guy in a few years given the increase in curvature over the years. I am relatively young at 31 and in the best shape of my life, so I'm hoping that will aid in the recovery timeframe.

Anyway, thanks in advance to anyone who replies and I look forward to being a part of this group as I deal with my scoliosis and its eventual treatment.

Marina63
01-20-2012, 01:45 PM
For what it's worth, you need to consider the future. I was in a similar position as you only older. I was very active, rarely had any pain or other issues with my scolisis. I went to the doctor about a year ago now for a tingling sensation in my left ribcage that I figured had something to do with my curve. It was then I found out that my curve had doubled since the last time I had it checked when I was 29 years old. I had also lost an inch in height.

I did NOT want this surgery at all but a future with a further collapsing curve scared me. I am relatively young, healthy, fit and went ahead with the surgery. Everything went off without a hitch but I was way more uncomfortable post surgery than before (not pain, discomfort). However, things are slowly getting better and I know I made the right decision. I don't want to be 60 or 70 (not sure I would have even made it that long)and have to deal with this surgery.

Good luck!

LindaRacine
01-20-2012, 03:31 PM
Hi...

Dr. Bederman is just about 1 year out of fellowship, so it's no surprise that he isn't a member of the SRS yet. If you feel comfortable with him, and he's covered by your insurance, I honestly don't see the need to go see a bunch of other docs. I think more than 2-3 opinions only muddies the water.

Regards,
Linda

titaniumed
01-20-2012, 07:40 PM
Its good that you started posting and reading. This does not mean that you have to make a decision right away, you do have some time to think carefully about your spine. You don’t do this just to get it done, its serious surgery. Its helpful to have ALL your ducks in a row first.

I saw a few surgeons through my 34 year wait, I was a candidate in 1975, and was an active skier. I waited mainly for technology to advance and of course, my skiing was a priority. From age 27 to 49 I maintained my pain with Chiro, but with 50-60 degree curves years ago, things did get worse.

I had a few meetings with my surgeon over 2 1/2 years, we talked. He had the training....19 years of it. Not SRS, but Twin trained, (TCSC) which I knew was the cats meow. He was young.....and I thought should I go with the younger, recently trained in new techniques kind of doc, or should I go with the older 10000 surgeries under his belt kind of doc??? Tough decisions.

My surgeon wanted me “online” reading.....surgeons like to have educated patients. It would be a good idea to order Dave Wolpert’s book, its for sale here at NSF. I feel it’s a necessary read, a good starter book.

You can ask any questions here....we have a great group here. BTW, I throw up some pretty corny jokes sometimes.....it’s a necessary thing, staying happy.
Ed

nanut
01-21-2012, 09:23 AM
I recently found out (at my 6mos check) that my ortho surgeon is heading to UCLA to start a spine clinic (scoliosis and more). His name is
Michael Daubs and he is on the SRS list. I did my research pre-op and felt very comfortable with his experience. He is headed to UCLA in March-my loss but your gain! I will ask him when he will start seeing patients and post soon. Good luck.
Nan
54 yo
55 lumbar pre op
Surgery T10-S1- 7/12/2011
University of Utah Health Sciences Center
Feel great just lacking a bit of endurance!

mabeckoff
01-21-2012, 10:52 AM
In my opinion, seeing any more Doctors would be very confusing. What is wrong with the one's you have seen?

LindaRacine
01-21-2012, 12:48 PM
I recently found out (at my 6mos check) that my ortho surgeon is heading to UCLA to start a spine clinic (scoliosis and more). His name is
Michael Daubs and he is on the SRS list. I did my research pre-op and felt very comfortable with his experience. He is headed to UCLA in March-my loss but your gain! I will ask him when he will start seeing patients and post soon. Good luck.
Nan
54 yo
55 lumbar pre op
Surgery T10-S1- 7/12/2011
University of Utah Health Sciences Center
Feel great just lacking a bit of endurance!

Hi Nan...

As I mentioned in a PM to you, I met Dr. Daubs and definitely had a positive experience with him. It's good to know that you had a good experience, so I can feel good about sending patients his way.

Regards,
Linda

nybw51mr42
01-22-2012, 02:32 PM
In my opinion, seeing any more Doctors would be very confusing. What is wrong with the one's you have seen?

Nothing really, it's just hard for me to just commit I guess. Given the huge impact of such a decision I just want as much information as I can get.

Melissa are you happy with Dr. Bederman?

mabeckoff
01-22-2012, 03:15 PM
Nothing really, it's just hard for me to just commit I guess. Given the huge impact of such a decision I just want as much information as I can get.

Melissa are you happy with Dr. Bederman?

I have has three surgeries with Dr Bederman. He is always available to answer me . He has been there to pick me up when I get depressed . He came to see me
when I was in rehab.The nurses in rehab cannot believe how attentive he is to his patients, not just me. Last week, I was in the office to see the pain
management Doctor. . The X-ray tech told Dr Bederman that I was there. He saw me and talked with me even though I did not have an appt to see him. Honestly, I have known him since April and I cannot think of any negatives about Dr Bederman. He spends as much time with every patient that is needed.I would love to
talk to you , if you want. Spend me a PM with your phone # and we can chat.

nybw51mr42
02-12-2012, 04:14 PM
Man this process gets even more confusing as I go along :(

Dr. Bederman: T10 - L5. MRI shows my L5-S1 disc is intact and strong so he feels I shouldn't go down to sacrum. Actually my L4-L5 is intact too, but he said stopping at L4 would be too short of where my curve stopped.

Dr. Kamshad Raiszadeh (referred by spine surgeon in NY): Extremely nice guy and is showing my x-rays around to other surgeons. Is curious if I can get away with T12-L4, as he would rather do less than more. He said he just doesn't know if that surgery would "take" in that I wouldn't need more surgeries later. Thus he is showing it around.

Dr. Robert Pashman: Saw him this Friday. Seems a bit less personable than the other two but speaks with a large amount of knowledge/confidence. Said only 6 doctors in US that do high volume and he is one of them. Said stopping at T12 is a huge mistake as it wouldn't correct my curve. Said it would either be T10 or potentially T2 as I have kyphosis or something (upper back curved). As for bottom, said likely down to Pelvis (is that the same as S1/Sacrum?) Said it is important to get down there to have an anchor to straighten me out and balance me. Said it is a huge controversy in the community whether that L5/S1 barrier even gives you more mobility. He says no. Interestingly enough he told me to go get more opinions, and recommended Dr. Hu UCSF.

Dr. Hu - Appt. on 3/7.

One thing I gathered is that I don't need surgery ASAP, I can even wait a year or two. But I've lost over an inch in height in the last two years and I'm not very happy about that. I hope Dr. Hu has some good insight as she has come recommended from every different angle possible (own research, family doctors, Pashman himself, etc.). I guess it would be much easier if each surgeon told me the same levels to fuse, but now I'm even more confused. Especially with the "theory" that the fusion to L5 or Pelvis has no real impact on mobility.

titaniumed
02-12-2012, 04:51 PM
If you have kyphosis, you have to worry about PJK (proximal junctional kyphosis) if fusing short in the mid thoracic. That’s why Dr P mentioned up to T2. PJK happens a few years after your surgery, you fall forward above the highest fused level.

Ask Dr Hu about this specifically when you go in March.

Also ask about the mobility of each lumbar level....I have read In Dr Moe’s book, 20 degrees articulation. She was an author in this book.

http://www.tcspine.com/about-us/dr-john-h-moe-exhibit/moe%E2%80%99s-textbook

Ed

LindaRacine
02-12-2012, 08:35 PM
Hi....

Most of the time, the top surgeons who need to fuse to the sacrum, put at least one screw or bolt in the pelvis. If they don't, there is a reasonably high rate of sacral fracture.

Statements like "I'm one of the top 6 surgeons in terms of volume" are a bit of a red flag for me. I don't think he has any way of knowing what volume anyone is doing, and I can think of a dozen docs around the country whom I think do more surgery than him. Unfortunately, there's no way of verifying it, so MDs get away saying stuff like that.

I feel like a broken record, but I don't think you (or I) can possibly know what the best strategy is for your surgery. I think the best thing we can do is to pick a surgeon with whom we feel we can place our confidence, and then assume that the surgeon is going to do what they think will result in the best outcome.

Good luck with your decision.

Regards,
Linda

P.S. Ed, PJK can turn up as early as 6 weeks postop (maybe even earlier, though it's impossible to know, as many people are leaning on a walker for their in-hospital postop X-rays) One of the things we're looking at right now, is when it develops.

jrnyc
02-13-2012, 12:09 AM
hi...i sent you a private message...
good luck with your decision...

jess

Confusedmom
02-13-2012, 10:34 PM
I got similarly differing opinions from surgeons ranging from well-known to not-so-well-known. At least you are seeing respectable surgeons, it looks like. I finally have come to the conclusion that the ones who want to do less extensive surgeries are just "buying time" for me, expecting more surgery later on. (I have the L5 or sacrum issue, too.) I finally decided to go with Dr. Lenke because he is the surgeon I saw with the most experience and seemingly best results. He is doing to do T3-4 to sacrum with pelvic fixation. I am hoping it will be my one-and-only surgery! Best of luck to you.

Evelyn

LSteen
03-19-2012, 07:56 PM
I had surgery with Dr. Pashman last June, 2011. He is an amazing man and I would trust him with my life. His support staff is equally wonderful and very supportive. He is very direct and totally honest about everything and possibly people interpret that as not being very caring but I found him to be a very caring and brilliant surgeon. He has always been available when I needed him and I will feel a deep connection to him for the rest of my life.

I would agree that seeing too many surgeons can cause confusion. Do your research and choose 2 or 3 to visit. Make sure they have done this surgery for many years and have done several hundreds/thousands before you. Best of luck!

nybw51mr42
02-20-2015, 01:12 PM
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
02-20-2015, 05:50 PM
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
02-21-2015, 11:26 AM
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
02-21-2015, 01:27 PM
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
02-21-2015, 05:16 PM
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
02-21-2015, 09:47 PM
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
02-22-2015, 11:48 AM
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
02-23-2015, 12:56 AM
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
02-23-2015, 09:21 AM
@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
02-23-2015, 10:01 AM
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
02-23-2015, 11:27 AM
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
10-14-2015, 09:13 AM
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
10-14-2015, 06:11 PM
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.