Announcement

Collapse
No announcement yet.

The "Art" of Dr. Lenke

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

  • #31
    Hi Sherie
    Yes, indeed I concur. Your daughters pics are incredible! And what a lovely young lady she is too.

    Hoping you see this, I have one big question, though. On the site with the pix, you say she has two STEEL (emphasis mine) rods and X# screws..

    Did you mean titanium perchance?

    I never heard of steel rods for deformity correction.

    Looking from then to now, I'm also curious about how her pain is these days and also how her scar has changed over time.

    Thanks!!
    Not all diagnosed (still having tests and consults) but so far:
    Ehler-Danlos (hyper-mobility) syndrome, 69 - somehow,
    main curve L Cobb 60, compensating T curve ~ 30
    Flat back, marked lumbar kyphosis (grade?) Spondilolisthesis - everyone gives this a different grade too. Cervical stenosis op'd 3-07, minimally invasive

    Comment


    • #32
      Timing? Monitoring?

      This may be off topic. If so, I apologize.

      First, I'd like to say that the pictures are amazing and great to see. We saw Dr. Lenke in January and are still waiting for a scheduled surgery date. I think that the waiting wouldn't be so scary if we had a doctor that was monitoring Kelsey. Shouldn't she be seen while we are waiting?

      Between August, when her initial x-rays revealed curves of 58 deg, and January, when they took the second set in St. Louis, she progressed to 67 deg T and 70 deg L. I thought that was a pretty major progression, but was encouraged by Dr. Lenke's attitude and manner. Also, as she is going to be a teaching case, and he said to set her up between 3 and 5 months, Spring to Early Summer, I did not ask about if we would have any additional appointments.

      However, 9 months later, we are no closer to a surgery date. We have not seen a doctor since and I am afraid that we have fallen through the cracks. Kelsey's rotation has continued to the point that it appears her ribs are sitting on her hip bone. She now has to work at standing upright, to the point that when I stood to close too her the other day she informed me that she couldn't maintain her balance with me so close. When hugging her to my side, I dislocated her arm a couple of weeks ago. And she has begun to complain about something "stabbing" her in the back. These are added to the continued lack of sleep, the difficulty with breathing, and occasional chest pain.

      I've called and left a message to let them know I'm concerned and ask about what I should do since we have NO local doctors, but have been waiting for several weeks for a call back on this.

      Is this typical? Sorry to be such a whiner. I know I have to call again tomorrow and try to simply talk to someone at the front desk, I assume. But, wanted to hear from others who might be able to tell me if these are just common occurrences and if any of you were monitored while you waited for surgery. (Our initial doctor said that if we postponed beyond 3 months, he would recommend close monitoring... )

      Any ideas, thoughts, suggestions, or just "you're being silly" words would be so appreciated.

      Thanks,

      Lisa

      Comment


      • #33
        Hi Lisa...

        Since it's already been decided that Kelsey will have surgery, there really is no rush. Teens are often scheduled for when it's convenient for their school schedule.

        With that said, I think it would be good to call again. Perhaps someone knows the name of the person who schedules Dr. Lenke's surgery.

        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


        • #34
          Thanks.

          I do already know the scheduling nurse. But, we are asked not to contact them with questions about scheduling. My real questions at this time are more about monitoring. She is not braced, of course, and the first doctor indicated she would need to be monitored to insure nothing "wonky" happened with her spine. Her fusion will be from t4-l4, so will be a significant fusion. I really have too many questions, I guess. I just want to make sure she isn't in any danger.

          Oh, btw, the nurse said she was available for any and all questions (except the surgery date), I'm just not having good luck with getting a call back.

          I will try again tomorrow. And probably feel stupid for asking.

          Comment


          • #35
            Originally posted by Kelsey's Mom View Post
            I will try again tomorrow. And probably feel stupid for asking.
            Please don't feel stupid. There is nothing stupid about your approach or follow through. You are an excellent advocate for your daughter.

            In re the fast-moving curve and joint dislocations, you might want to get an evaluation for Marfan syndrome. These things don't mean she has the syndrome; They are merely consistent with it. The point of ruling it in or out is to know whether you need to do echocardiograms for aortic dissection which is the reason why people with Marfan had shortened lifespans.

            The good news is all this is fixable, the scoliosis, the aortic enlargement, etc., etc. and these people have normal lifespans if you catch it in time.

            Here is a list of signs/symptoms...

            http://www.marfan.org/marfan/2320/Features/

            Good luck.
            Sharon, mother of identical twin girls with scoliosis

            No island of sanity.

            Question: What do you call alternative medicine that works?
            Answer: Medicine


            "We are all African."

            Comment


            • #36
              Please call again

              Dear Kelsey's Mom,

              I am so sorry this is happening to you and your daughter, and I am sure it is made all the worse by not getting a call back. I would politely but firmly call again today with your concerns. Maybe they will want her to have another x-ray, maybe not. But I agree if it was my daughter, I would want someone to take a look at her after all this time. Please don't feel stupid--you are her Mom, and her greatest advocate. Persist!

              I know that AIS surgery is no emergency, but I have to think that the surgery gets more complicated at some point as the curve get more advanced. Dr Lenke has a wonderful pediatric partner, Dr Luhmann, who works out of Wash U as well as Shriners St Louis. Dr Luhmann did my young daughter's VBS (stapling) surgery in May, and I love him. It might be worth at least an inquiry about seeing him.

              Take care, and please do let us know how things are going. The waiting is without a doubt the worst part.
              Gayle, age 50
              Oct 2010 fusion T8-sacrum w/ pelvic fixation
              Feb 2012 lumbar revision for broken rods @ L2-3-4
              Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


              mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
              2010 VBS Dr Luhmann Shriners St Louis
              2017 curves stable/skeletely mature

              also mom of Torrey, 12 y/o son, 16* T, stable

              Comment


              • #37
                Hi Lisa...

                I would go on the assumption that something has slipped through the cracks.

                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


                • #38
                  ditto to all.....
                  i thought of the same comments last nite...but feared we are supposed to "worship" Dr Lenke and not criticize him...many speak of him in such a way...
                  sorry...but i feel that is the truth!!!!!
                  i believe that no surgeon/doctor should be worshiped...no matter how good...none are infallible...they are humans...with great talent...but humans just the same!

                  jess

                  Comment


                  • #39
                    Oh, I don't worship any doctor. But, I do have a great deal of respect for Dr. Lenke. He is very talented.

                    I don't think this is his fault. The truth is that, unfortunately, he is very busy and occasionally, I would guess, people slip through the cracks. I've been trying to let the process work for me and getting more and more nervous at the same time. I could probably take some of the blame for not being more persistent.

                    I didn't get to make the call today, but have my notebook ready so that I can make the call I need to tomorrow before I go to work.

                    I'm still nervous. But, at least I know that I'm not just being a pushy, worried mom. (Though I will admit to both of those and a lot more.)

                    Thanks for the comments. It has encouraged me that I'm not alone.

                    Comment


                    • #40
                      hi Kelsey's Mom
                      sorry...i wasn't referring to you...but to a few on forum who write about Lenke as if he really should be worshiped...least that's how it sounds!

                      as a social worker, and before that, a special ed teacher (and evaluator), i know that often, if a child doesnt have that advocate, things just dont happen...so you have every right...to do whatever it takes!

                      but i can tell that you already know that

                      best of luck on the phone...
                      jess

                      Comment


                      • #41
                        Hi Lisa

                        Sorry to hear you're having these kinds of problems. When we went for the initial consult, we scheduled surgery the same day. I don't know if you're in touch with Kathy, his nurse, but that's who I communicated with about everything. I would not hesitate to contact her about the surgery, I also agree that you've fallen through the cracks and while it's not an emergency, I don't think I'd want to see the progression continue. You can also ask to be put on a waiting list for cancellations.

                        I will send you Kathy's email in PM.

                        Comment


                        • #42
                          Thank you so much, Sherrie.

                          Comment


                          • #43
                            Sorry to be such a whiner. I know I have to call again tomorrow and try to simply talk to someone at the front desk, I assume.
                            NOBODY's whining when it comes to their children.

                            That's #1.

                            After that, as it's been said, assume you've fallen through the cracks, etc.
                            I can add one thing based on my early contact with his office. They told me he was assuming the Presidency of SRS in September and that he'd be beginning a LOT of new (time-consuming) responsibilities then.

                            Also that after this point he'd have many unpredictable events coming up connected with this "new job" and that surgeries might be postponed on that account. In fact, one of our members had her surgery postponed for this reason. I'd assume that they're pretty frantic trying to schedule and reschedule his clinical load starting now.

                            Does NOT mean you shouldn't keep after them about your daughter! Those commenting above are among the most medically knowledgeable on board here. Her symptoms sound like ones that most definitely require attention. What a great idea to get in touch with that pediatric expert.

                            Best to both of you - and admiration for the "Mom" job you're doing. I really don't know how the parents do it. It's so much harder for our kids to be in pain than to bear it ourselves. Also, if you need it, reinforcement about your sense of when your daughter needs you to get help for her.

                            Do NOT hesitate following through on your instincts in this regard. They must exist, but I've never yet (you, in spades) "met" a single mother or father online here who struck me as out of line in their concern for their children -- but MANY who worried they were!

                            Trust your gut.

                            Amanda
                            Not all diagnosed (still having tests and consults) but so far:
                            Ehler-Danlos (hyper-mobility) syndrome, 69 - somehow,
                            main curve L Cobb 60, compensating T curve ~ 30
                            Flat back, marked lumbar kyphosis (grade?) Spondilolisthesis - everyone gives this a different grade too. Cervical stenosis op'd 3-07, minimally invasive

                            Comment


                            • #44
                              Hi there,

                              If you are still having trouble getting a call back, I would ask the receptionist for the nurses (Kathy's?) email address. If you email her with your concerns, she will probably take it directly to Dr. Lenke. Being a paranoid parent myself, I would DEMAND attention right away. Even if he cannot schedule surgery immediately, maybe he could squeeze in a consult appointment or let you see Dr. Bridwell, just to make sure nothing is "getting wonky." If you do not get a response within a week, I'd start talking to other excellent surgeons in nearby areas (just for a consult, you could still have surgery with Lenke). Chicago can't be too far away!

                              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


                              • #45
                                Sorry, did not see this until today. Been really busy lately.

                                Originally posted by Back-out View Post
                                Hi Sherie
                                Yes, indeed I concur. Your daughters pics are incredible! And what a lovely young lady she is too.
                                Thank you, that's very kind. She's a lovely young lady inside and out.

                                Originally posted by Back-out View Post
                                Hi Sherie
                                Hoping you see this, I have one big question, though. On the site with the pix, you say she has two STEEL (emphasis mine) rods and X# screws..

                                Did you mean titanium perchance?

                                I never heard of steel rods for deformity correction.
                                I meant stainless steel, I guess I was too lazy to type the entire word out.

                                Originally posted by Back-out View Post
                                Looking from then to now, I'm also curious about how her pain is these days and also how her scar has changed over time.
                                Thanks!!
                                She occasionally has back pain. The last time (last month) was preceded by some type of minor illness. She said she wasn't feeling well, then her back started hurting, unfortunately, the back pain outlasted the unwellness by several weeks. I don't know why it lasted so long but it doesn't happen often now days. Prior to surgery she had a lot of discomfort and pain on a daily basis so surgery has had a very positive outcome for her.

                                Best wishes to you!

                                Comment

                                Working...
                                X