Announcement

Collapse
No announcement yet.

How many docs to see?

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • How many docs to see?

    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.
    Last edited by nybw51mr42; 02-20-2015, 01:38 PM.

  • #2
    Surgery

    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!
    50 years old!!!!!
    Wore Milwaulkee Brace 1976-77
    Original curve 36 degrees ( measured in the 70s)
    Advanced to 61 degrees 01/2011
    Surgery 07/11/2011
    Fused T1-L2 (curve now in the 20s!)

    Comment


    • #3
      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
      Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
      ---------------------------------------------------------------------------------------------------------------------------------------------------
      Surgery 2/10/93 A/P fusion T4-L3
      Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

      Comment


      • #4
        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
        49 yr old male, now 63, the new 64...
        Pre surgery curves T70,L70
        ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
        Dr Brett Menmuir St Marys Hospital Reno,Nevada

        Bending and twisting pics after full fusion
        http://www.scoliosis.org/forum/showt...on.&highlight=

        My x-rays
        http://www.scoliosis.org/forum/attac...2&d=1228779214

        http://www.scoliosis.org/forum/attac...3&d=1228779258

        Comment


        • #5
          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!

          Comment


          • #6
            In my opinion, seeing any more Doctors would be very confusing. What is wrong with the one's you have seen?
            Melissa

            Fused from C2 - sacrum 7/2011

            April 21, 2020- another broken rod surgery

            Comment


            • #7
              Originally posted by nanut View Post
              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
              Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
              ---------------------------------------------------------------------------------------------------------------------------------------------------
              Surgery 2/10/93 A/P fusion T4-L3
              Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

              Comment


              • #8
                Originally posted by mabeckoff View Post
                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?

                Comment


                • #9
                  Originally posted by nybw51mr42 View Post
                  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.
                  Melissa

                  Fused from C2 - sacrum 7/2011

                  April 21, 2020- another broken rod surgery

                  Comment


                  • #10
                    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.

                    Comment


                    • #11
                      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-j...0%99s-textbook

                      Ed
                      49 yr old male, now 63, the new 64...
                      Pre surgery curves T70,L70
                      ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
                      Dr Brett Menmuir St Marys Hospital Reno,Nevada

                      Bending and twisting pics after full fusion
                      http://www.scoliosis.org/forum/showt...on.&highlight=

                      My x-rays
                      http://www.scoliosis.org/forum/attac...2&d=1228779214

                      http://www.scoliosis.org/forum/attac...3&d=1228779258

                      Comment


                      • #12
                        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.
                        Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
                        ---------------------------------------------------------------------------------------------------------------------------------------------------
                        Surgery 2/10/93 A/P fusion T4-L3
                        Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

                        Comment


                        • #13
                          hi...i sent you a private message...
                          good luck with your decision...

                          jess

                          Comment


                          • #14
                            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
                            age 48
                            80* thoracolumbar; 40* thoracic
                            Reduced to ~16* thoracolumbar; ~0* thoracic
                            Surgery 3/14/12 with Dr. Lenke in St. Louis, T4 to S1 with pelvic fixation
                            Broken rods 12/1/19; scheduled for revision fusion L1-L3-4 with Dr. Lenke 2/4/2020
                            Not "confused" anymore, but don't know how to change my username.

                            Comment


                            • #15
                              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!

                              Comment

                              Working...
                              X