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  • So Glad To Find You...

    MY FUSIONS WERE IN 1982 & 1983 FOR AN S CURVE: 75, 55, & ? DEGREES. THE HARRINGTON ROD BROKE AFTER THE FIRST FUSION, BUT HAS REMAINED IN ONE PIECE SINCE SECOND FUSION. I WAS AROUND 11 YRS. OLD WHEN MY AUNT ASKED ME WHY I WAS LIMPING. I THEN SHOWED HER HOW UNEVEN MY HIPS LOOKED BUT DIDN'T KNOW WHY. SHE VERY CALMLY CALLED MY MOM IN TO LOOK, AND THAT'S WHEN IT ALL BEGAN. THE FIRST DOCTOR WAS VERY LAID-BACK ABOUT IT. THE SECOND ORDERED X-RAYS, REVEALING I NEEDED A BRACE ASAP. AFTER WEARING THE BOSTON JACKET, I WAS THEN SWITCHED TO THE MILWAUKEE- TO- YOUR- NECK BRACE. IT SEEMED LIKE THE CURVES HAD A MIND OF THEIR OWN, AGGRESSIVELY GETTING WORSE. BY 10TH GRADE, THERE WAS NO CHOICE BUT TO OPERATE.
    SINCE THEN, I'VE BASICALLY BEEN FINE. ACHES AND PAINS HERE & THERE, BUT SO DOES EVERYONE, RIGHT? I'VE BEEN BLESSED WITH A WONDERFUL HUSBAND, AND CARRIED TWO, NOW BEAUTIFUL , WONDERFUL SONS. NOTICED HOW EASILY I GET STIFF NECKS AND SCIATICA, BUT NEVER REALLY THOUGHT ANYTHING OF IT. ONE DAY IN FEBRUARY, I WOKE UP WITH EXCRUCIATING PAIN DOWN THE FRONT OF MY RIGHT LEG. SINCE THEN, IT'S BECOME HIP AND LOWER BACK PAIN AS WELL. IT VARIES FROM MODERATE TO SEVERE. ALSO, MODERATE TO SEVERE PAIN & NUMBNESS IN MY ARMS AND HANDS. AFTER XRAYS & MRI'S, THEY HAVE FOUND A CURVE BELOW MY PREVIOUS FUSION, CAUSING ALL KINDS OF PINCHING AND RUBBING. THERE'S NARROWING AND ARTHRITIS. THERE'S A PROBLEM WITH ALMOST EVERY DISC IN MY NECK. (MY ROD IS IN MY LUMBAR SPINE.) BOTH HANDS SHOWED CARPAL TUNNEL AND NERVE DAMAGE FROM THE SPINE.
    I'VE BEEN ON ANTI-INFLAMMATORIES, PAIN-KILLERS, PT, AQUATIC PT, ULTRASOUND, TENS UNIT, CHIROPRACTIC CARE, BUT NOTHING PROVIDES 100% RELIEF. THE ONLY REMEDIES THAT HELP THE BEST, BUT AREN'T THE BEST ANSWERS ARE, PAIN MEDICINE, ANTI-INFLAMMATORIES,LAYING DOWN WITH PILLOWS UNDER KNEES, AND A MEMORY FOAM PILLOW. I'VE BEEN TOLD I'M PAST THE POINT OF GETTING RELIEF FROM AN EPIDURAL, WHICH I'D HAVE TO AGREE WITH. THE FIRST ORTHOPEDIC SURGEON I SAW SAID HE COULD GO IN THROUGH THE FRONT AND BACK, TWO DIFFERENT DAYS, REMOVE EXISTING ROD, FUSE NEW CURVE AT BOTTOM WITH A NEW ROD, BUT BY GOING IN THROUGH HE FRONT, YOUR VULNERABLE TO MANY COMPLICATIONS. FURTHERMORE, HE DOES DO NECKS, BUT WOULDN'T TOUCH MINE B/C TOO MANY DISCS HAVE A PROBLEM. HELP?!

  • #2
    Lauren...

    Where are you located?

    --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


    • #3
      Lauren...

      Never mind. I see you're in Pennsylvania.

      Here are some doctors to check into:

      Todd Albert:
      http://www.spineuniverse.com/authorbio.php?authorID=25

      Denis Drummond:
      http://www.uphs.upenn.edu/ortho/phys.../drummond.html

      Richard Balderston:
      http://www.3bortho.com/Balderston.htm

      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
        THANKS FOR THE INFO!

        HI LINDA!
        I WAS SO GLAD TO SEE A RESPONSE SO QUICKLY TO MY MESSAGE. I WILL LOOK INTO THE NAMES YOU GAVE ME. I KNOW OF A DIFFERENT DR. AT JEFFERSON, DR. VACCARO, WHO I'M TRYING TO SEE. DO YOU KNOW OF HIM? I AM FAMILIAR WITH DR.BALDERSTON'S NAME, BUT NOT DR. DRUMMOND. THANK YOU FOR YOUR INFORMATION. I REALLY APPRECIATE IT!
        HAVE A GREAT DAY.
        LAUREN

        Comment


        • #5
          Hi Lauren...

          I see that Dr. Vaccaro is a member of the Scoliosis Research Society, and found his CV here:

          http://rothmaninstitute.com/ourdoctors/Vaccaro.html

          But, I don't think I've ever heard anything about him. Sorry.

          Good luck!

          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


          • #6
            THANKS!!

            THANKS FOR YOUR EFFORTS AND YOUR QUICK RESPONSE. I'M ALSO TRYING TO GET AN APPT. WITH DR. DANTE, WHO IS A NEUROLOGIST AT JEFFERSON. DO YOU KNOW OF HIM?
            WARMLY,
            LAUREN
            WHAT HAVE BEEN YOUR EXPERIENCES WITH SCOLIOSIS??

            Comment


            • #7
              Hi Lauren...

              I really don't know any neurologists in terms of scoliosis. When you choose a surgeon, just be sure it's someone who has done a LOT of whatever it is you'll need.

              You can read about my experience here:

              http://www.scoliosislinks.com/AboutMe.htm

              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
                Hi Lauren,
                I am also in PA and I'm due for a trip to NYC in 2 weeks regarding a revision surgery. I have been to so so many ortho/scoliosis doctors but the key to this issue is revision specialist. Take my advice, I have wasted so much time and so much money when I should have went straight to NY in the first place. I am in constant pain pretty much and I cannot do much of anything but talk, walk and sit down. My mobility is shot and I know that I need this. I guess what I'm trying to say is don't settle for less than the best when it comes to your spine. If you've had a fusion once, in my belief, and are having problems now, a revision doctor is really the only person who I myself will rely on. I have had to many upsets with orthos and just plain spine specialists. I wish you lots of luck and hope that you find relief soon!

                Christina

                Bucks county, where is that?
                28 years old. Fusion for Scoliosis at age 17 from T1 to L1 area with Harrington Rods. Surgery in Sept 2003 for degeneration of discs and bone spurring of the facet joints. (Been dealing with the pain and immobility for almost 4 years.) Found out now that the spurring is back and there is more of it along with disc bulging. Going to NYC on 6-17 to see revision doctor. Probably will be having fusion extended to S1.

                Comment


                • #9
                  dear christina,
                  IT SOUNDS LIKE YOU'VE BEEN THROUGH A LOT!! I HOPE 6/17 BRINGS YOU SOME ANSWERS. I'VE BEEN HEARING MORE AND MORE THAT I HAVE TO SEE SOMEONE VERY, VERY EXPERIENCED AND WELL KNOWN. WHO ARE YOU SEEING IN NY?
                  BUCKS COUNTY IS ABOUT 30 MILES NORTH OF THE CITY(PHILADELPHIA). WHERE ARE YOU LOCATED?
                  LAUREN

                  Comment


                  • #10
                    Hi Lauren,
                    Definetely see someone who has experience with adult complex revision. If I had to do it over again, I would change so much as far as seeing the other doctors.
                    I am seeing Dr. Boachie Adjei and Dr. Joseph Dryer. One on the 17th and the other on the 18th. It will be a hell of a ride with the insurance companies but I have no choice. The are both out of network for me but I am hoping all goes well. I won't go to someone less experienced just because they are in network.
                    I am located north of Pittsburgh and South of Erie. I will be traveling about 6-7 hours to NYC but it will be worth it.
                    Our headquarters here at work is near Reading, PA, in Bowmansville. But anway, I would definetely see a top doctor. I also have a curve below my original fusion. I don't know how severe it is, I've just seen it on the x-rays and don't know the degree. I'm sure that has something to do with all of this. I know that my discs and vertebre are wedged shaped because of this. I'll just have to wait and see. My spinal canal is also narrowing due to the stenosis and facet joint spurring (arthritis) that they removed last summer. The bone growth that they removed last summer has returned and that is what has been the big issue. I hope and pray that I can be helped. Have you had any treatment at all then or is this just happening?

                    Christina
                    Last edited by Mistina; 06-03-2004, 03:23 PM.
                    28 years old. Fusion for Scoliosis at age 17 from T1 to L1 area with Harrington Rods. Surgery in Sept 2003 for degeneration of discs and bone spurring of the facet joints. (Been dealing with the pain and immobility for almost 4 years.) Found out now that the spurring is back and there is more of it along with disc bulging. Going to NYC on 6-17 to see revision doctor. Probably will be having fusion extended to S1.

                    Comment


                    • #11
                      CHRISTINA-
                      HAVE YOU SEEN ANY DRS. IN CENTER CITY? I'M HOPING TO SEE EITHER DR.VACCARO OR DR.ALBERT AT JEFFERSON. I'VE ALSO HEARD GOOD THINGS ABOUT DR.BALDERSTON, IN TERMS OF SCOLIOSIS, NOT RECONSTRUCTIVE SURGERY SPECIFICALLY. WHERE DID YOU HAVE YOUR LAST SURGERY? HOW ARE YOU GOING TO DO ALL THAT DRIVING???? I ALSO HAVE NARROWING AND STENOSIS. I HAVEN'T HAD BACK SURGERY SINCE MY FUSION IN 1983. I'VE ALSO NEVER HAD SO MUCH PAIN, SO MUCH OF THE TIME. DO YOU KNOW OF ANY SUPPORT GROUPS IN PA??
                      LAUREN

                      Comment


                      • #12
                        Lauren...

                        There are a few support groups in PA. You can find contacts on my website:

                        http://www.scoliosislinks.com/SupportGroups.htm

                        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


                        • #13
                          thanks linda!
                          I DID E-MAIL ONE OF THEM AND IT WAS RT'D TO ME UNDELIVERED. THEY'RE BOTH , UNFORTUNATELY, PRETTY FAR AWAY.
                          WARMLY,
                          LAUREN

                          Comment


                          • #14
                            Hi Lauren,
                            It doesn't bother me to sit thank god, so driving that far shouldn't bother me too much. If I had to do the driving, it would be a different story. And, I'm definetely not going to drive in NYC, lol.
                            I haven't seen any doctors in Center city, is that in Philly? I do know that alot of the Dr.'s is NYC, alot of their paitients are from the Philly area. So, it seems they all get recommended up there when it comes to revision surgery and those kind of complications.
                            I had my original surgery at Shriners Hospital in Erie, PA.
                            I don't know of any real support groups here in PA, I get alot of my support and info on line and with the "fiesty group". If Linda knows what I'm talking about maybe she can put a link up. I have been banned from forums for doing that and I can never be too sure.
                            Christina
                            28 years old. Fusion for Scoliosis at age 17 from T1 to L1 area with Harrington Rods. Surgery in Sept 2003 for degeneration of discs and bone spurring of the facet joints. (Been dealing with the pain and immobility for almost 4 years.) Found out now that the spurring is back and there is more of it along with disc bulging. Going to NYC on 6-17 to see revision doctor. Probably will be having fusion extended to S1.

                            Comment


                            • #15
                              CHRISTINA,

                              I'm in western Pa. also. My doc is Dr. Donaldson III at UPMC. He is chief of spine surgery there and I have all the faith in the world in him. If you would like to contact him, post here and I will get in touch with you.

                              Comment

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