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Thread: A new member with questions

  1. #1
    Join Date
    Jun 2008
    Posts
    47

    A new member with questions

    Hello Everyone,

    I have been reading posts for days and days now. I wish I had found this site years ago. I am so thankful it is here.....

    I am a 26 year old female. I had 2 Harrington rods put in 10 years ago from T4-L2. I was experiencing a horrible gnawing, piercing pain in my right shoulder blade region (between the scapula and spine) before these rods were ever put in. About a year after surgery when I began to be much more active skiing, etc, I began experiencing that again. It is so debilitating...I can't do any dishes or cleaning, carry groceries, or any little activities without that pain. I have just been "dealing with" it....trying acupuncture, physical therapy, massage, injections and nothing has helped.

    For the last two years, the rods have become painful in different areas as well. In the thoracic top region, I can feel a bulge through my skin where the metal comes through. It feels like a tight knot that is pulling in all directions. I also now feel the left rod coming through on the bottom. When I breathe inward, I have a sharp tight pain as well. I also have a lot of recent sternum pain and pain underneath the right ribcage. Does anyone else experience that?? The last few months I have been on lortab and lying down a lot. I am considering revision surgery. I went back to my original doctor and he said the rods are giving me the pain. He only gave my husband and me 5-10 minutes in his office and left without allowing us to ask the rest of our questions. I was so upset...I don't know how I'm going to keep living my life in so much pain. I know I will never be able to keep teaching or every have children since I can lift nothing without a lot of pain during/afterward.

    How many of you out there have had your rods completely removed? What was the outcome? I have done some research and found some spine journals where people have had problems with re-curvatue. How many of you have had to have them put back in?

    I am at the point that I'm willing to go anywhere in this country to see anyone who really knows what they're doing when it comes to revisions. I have an appointment scheduled with Dr. Sachs and Dr. Shelokov in Texas in a month. However, the threads about Dr. Shelokov and people dying scare me. I would so much appreciate to hear if anyone has the same problems I am having or has any other suggestions.

    With hope,
    Scolimich in Michigan

  2. #2
    Join Date
    Oct 2007
    Location
    Indiana
    Posts
    1,974

    Smile Welcome!

    Hi scolimich! I don't have any helpful info for you, but did want to say I'm glad you're here and I hope someone can help you out. I sure am sorry about all the troubles and pain you've been experiencing...

    I don't know much about either of those doctors except from what I've read here on the forum. I will say that the one casualty I can think of didn't happen because of the surgeon, but rather as a result of something the anesthesiologist mistakenly did... if I'm remembering correctly.

    Best wishes in finding the help you need. Susie
    66 and still heartbroken...
    2007 52 w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior spinal fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

    Corrected to 15
    2014 DXd w/CMT (type 2)

    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

  3. #3
    Join Date
    May 2004
    Location
    Houston, Texas now live in Colorado Springs, CO
    Posts
    543
    Scolimich,

    I sent you a PM. If you don't know how to get to it look on the upper right hand side of your screen where it says Welcome. Just under that in blue it says Private Message. Click there and it will take you to the message.
    Theresa

    April 8 & 12, 2004 - Anterior/Posterior surgery 15 hours & 7 hours
    Thorasic - 79 degree down to 22
    Lumbar - 44 degree down to 18
    Fused T2 to sacrum
    June 2, 2005 - Pedicle subtraction osteotomy @L3 7 hours
    MAY 21, 2007 - Pedicle subtraction osteotomy @ L2, extended the fusion to S2 and added pelvic instrumentation 9 hours

    FUSED T2 - SACRUM 2

  4. #4
    Join Date
    Jun 2007
    Location
    DFW area of Texas
    Posts
    72
    Hi Scolimich,

    I'm sure you've already found out that being in the forum gives us that extra little bit of knowledge and power; we are benefitting from hundreds of scoli patients' experiences.

    I am replying to tell you that you will probably love Dr. Shelokov. He did my first three surgeries and I'd probably still be with him if it weren't for one of his other patient's problems with United Healthcare. He had to dismiss all of us who had UMC at the time; that happened in the spring or summer of 2005. He's so experienced having had thousands of patients. He has a terrific and dynamic personality; he's warm and very caring. If he's still there, he has a super operating assistant, Jeff. At your first appointment, unless you're initially being screened by the P.A., he will spend from 30 minutes to an hour with you. Prior to the first surgery, he scheduled an appointment with all of my family. I'll never forget that he told my mother he is a Christian and needed all the prayer he could get for my surgery. You probably know this, but be sure to write down all of your questions, your symptoms, everything that's going on with you. I hated having to get another doctor, but I found Dr. Viere in Dallas and am pleased with him; I think it's my body that is fighting against the rods and fusion and nothing has been the fault of either doctor (as all of the public likes to say).

    You simply must get something done. I cringe reading your post. You are suffering when you shouldn't be. I don't know anything about the other doctor you mentioned, but if he's recommended in the forum, he'll be okay for you.

    Good luck. I'll be watching for news of your pending surgery.
    Diane in Dallas
    Adult Ideopatic Scoliosis (37%) and Kyphosis (65%)
    Surgery #1 8/4/03 - Dr. Shelokov, Plano
    Surg #2 12/8/03 - Dr. Shelokov, Plano
    Surg #3 1/10/05 - Dr. Shelokov, Plano
    Surg #4 9/10/07 - Dr. Viere, Dallas
    Surg #5 1/28/08 - Dr. Viere, Dallas
    Surg #6 4/27/09 - Dr. Viere, Dallas

  5. #5
    Join Date
    Jun 2008
    Posts
    47

    Thank you

    Thank you to all who have replied so quickly.....wow, there are other people out there who understand/are suffering like I am.

    Diane, I am curious about an osteotomy??? Is that when you have some screws/hooks removed? The only pedicle I remember hearing about was a pedicle screw...I'm curious because best-case scenario might be that I try to have those screws/hooks in my upper thoracic removed which might be causing a lot of the pain.

    Thanks.

    Scolimich
    age 26
    posterior fusion: 1998 T4-L2

  6. #6
    Join Date
    Jun 2007
    Location
    DFW area of Texas
    Posts
    72
    No, I don't think so. I did a search and the web directory says this:

    An osteotomy is a surgical operation whereby a bone is cut to shorten, lengthen, or change its alignment. It is sometimes performed to correct a hallux valgus, or to straighten a bone that has healed crookedly following a fracture. It is also used to correct a coxa vara, genu valgum, and genu varum. The operation is done under a general anaesthetic. Osteotomy is one method to relieve pain in arthritis, especially of the hip and knee. It is being replaced by joint replacement in the older patient.

    All of my surgeries following the original one were called Revisions. Such a simple word for a major surgery, and every one of them were major. I think the doctor's thought is that since he's there anyway, he'd better check out the entire back, so my scar is beginning to look like wide-track.

    The 1st revision done by Dr. S was to repair a screw that had worked loose in my left pelvic (iliac crest?). He replaced the screw on both sides with a bolt. But "since he was there", he opened me up completely, top to bottom. The 2nd revision done a year later was to re-fuse the upper back which showed not to have fused on the tests he had run (I honestly don't remember if it was just Xray or more, because I've had so many tests). My symptoms were pain. The 4th and 5th were each to repair broken rods, one in the thoracic and the last in the lumbar, but in the 5th surgery, he removed all the hardware from the Sept operation so he could make one continuous re-instrumentation. After the 5th, the PA gave me 2 packages, one containing the instrumentation removed during the Sept operation and the 2nd package containing the instrumentation that was put in in Sept which he took out in Jan. Man, it's starting to sound like a car engine.

    Following the 2nd "revision" I saw this lady in Dr. S's office who was striking. Later she and I happened to park at the same time in the building where the P.T. was located. She was inside when I arrived. I asked the P.T. about her and she told me that she had had 22 operations. So, I keep reminding myself that others, including that beautiful classy lady, have had multiple surgeries and kept going back as needed. I wonder about her - her name was Susan, and if she's reading this post, I mean admiration only for her obvious courage and strength.
    Diane in Dallas
    Adult Ideopatic Scoliosis (37%) and Kyphosis (65%)
    Surgery #1 8/4/03 - Dr. Shelokov, Plano
    Surg #2 12/8/03 - Dr. Shelokov, Plano
    Surg #3 1/10/05 - Dr. Shelokov, Plano
    Surg #4 9/10/07 - Dr. Viere, Dallas
    Surg #5 1/28/08 - Dr. Viere, Dallas
    Surg #6 4/27/09 - Dr. Viere, Dallas

  7. #7
    Join Date
    May 2004
    Location
    Houston, Texas now live in Colorado Springs, CO
    Posts
    543
    Scolimich,

    Click here to see an article about osteotomies.
    Theresa

    April 8 & 12, 2004 - Anterior/Posterior surgery 15 hours & 7 hours
    Thorasic - 79 degree down to 22
    Lumbar - 44 degree down to 18
    Fused T2 to sacrum
    June 2, 2005 - Pedicle subtraction osteotomy @L3 7 hours
    MAY 21, 2007 - Pedicle subtraction osteotomy @ L2, extended the fusion to S2 and added pelvic instrumentation 9 hours

    FUSED T2 - SACRUM 2

  8. #8
    Join Date
    Jun 2007
    Location
    DFW area of Texas
    Posts
    72
    Theresa

    I bow to your knowledge --- I did not know that. Thanks.
    Diane in Dallas
    Adult Ideopatic Scoliosis (37%) and Kyphosis (65%)
    Surgery #1 8/4/03 - Dr. Shelokov, Plano
    Surg #2 12/8/03 - Dr. Shelokov, Plano
    Surg #3 1/10/05 - Dr. Shelokov, Plano
    Surg #4 9/10/07 - Dr. Viere, Dallas
    Surg #5 1/28/08 - Dr. Viere, Dallas
    Surg #6 4/27/09 - Dr. Viere, Dallas

  9. #9
    Join Date
    Jun 2008
    Posts
    47

    Thanks

    Thank you Theresa and Diane for the info.....I thought it was Diane's post that talked of an osteotomy....but then I realized that it was Theresa! Sorry for the mixup. thanks to both for the info.

    Scolimich

  10. #10
    Join Date
    Jun 2007
    Location
    Great Barrington,MA
    Posts
    3

    revision surg

    dear scolimich,
    I've just started to investigate revision possibilities. My scoliosis was discovered in the late 1950's & called a minimal curve,so PT excercises were advised. By age 14, 3yrs later, I had a full curve & as a freshman in college for PT I was told the numbers. I continued with all activities and full time nursing as a career. I married & had my first child in '73 & saw my first orthopedist as an adult due to backache & spasms. This was in Boston He told me I "compensated well" since he would never be able to tell my curve was T85' & L72'. His description of surgery at that time included 7-8months in hospital on a stryker frame which horrified me enough to say Thanks,but no thanks. So I went home &took advil. After the birth of my second child in '76, I almost dropped him while having a spasm,so off to the local orthopedist in Western MA who said" Boston or New York?" I chose NY & ended up at Hosp for Special Surgery with a Dr David Levine who was incredible.
    I was 30yr old when I had my surgery and they were just beginning to operate on "older" patients like myself. He promised me 15-18yrs pain free & I've done very well. Around 20yrs post-op, I started having problems;the usual stuff- numbness down the outside of my legs, severe backache(I've always had an aversion to using the word pain),scapula aching, & sometimes I can point right to the top & bottom of where the rod is placed where there is discomfort; I've lost height, but what disturbs me most is the inability to do normal ADL's without having to lie down periodically to relieve the pain & walking only short distances without having to sit,plus my thoracic rib cage has shifted completely to the right causing right lower abdominal discomfort.
    So I found Dr. Shelcov(sp?) in Texas whose office referred me back to my old Hosp for Special Surg & Dr. Boachie who I consulted with last Nov..
    I also saw A Dr Rand at New England Baptist in Boston last April, since I had seen him after 2 severe setbacks of spasms 2 yrs in a row. They each have different approaches;Boachie does all of it Anterior/posterior in one surgery;while Rand does the anterior one week & allows 1wk recovery, then the 2nd wk, he does the posterior procedure. Who knows? One also has to consider your insurance;the office manager at HSS didn't recognize our ins. & wanted to know why I didn't just go to Boston! I won't bore you with my thoughts. Rand' off. mgr. knew our ins, & said no problem. However I've been waiting 3mon for her to give me names of patients who've a history like mine and have had the surgery.
    this site is a blessing, but in the end you have to investigate and decide whether to risk it and that you're satisfied with your choice of surgeon.
    Feel free to ask any questions of me. Good luck & take care. Suemc

    P.S. Just got a phone call from Rand's office (6calls later!)with 2 women to call. Wish me luck.

  11. #11
    Join Date
    Jun 2008
    Posts
    47
    Hi and thanks so much for responding!

    What do you think they will do if you have another revision??? Is the metal bothering you or is the curve worsening??


    Also, I noticed that you have had abdominal pain...can you describe what it feels like??

    thanks.

    Scolimich

  12. #12
    Join Date
    Aug 2007
    Location
    Auckland, New Zealand
    Posts
    185
    Hi Scolimich,
    I'm a 27 year old and had a revision in December last year. I was having increasing pain over the few years prior, and was on quite a bit of medication for that. My curve had increased despite the surgery, because the surgeon didn't fuse high enough in the first surgery. So my revision involved leaving in the old metalware from the anterior surgery, and adding more in that extended higher and lower for the lower. I still can't believe what I have managed to get through, because I had to, but it has had ups and downs. I'm still recovering, but am better than before my surgery in terms of medication etc. Everyone's case is different, but I think I went through a bit because of my young age needing revision surgery, thinking about the long term implications of that.
    All the best
    1994 curve at age 13, 70 degrees, untreated
    2000 Anterior fusion with instrumentation T9-L2, corrected to 36 degrees, 14 degree angle between fused and un-fused thoracic spine.
    2007 26 degrees junctional scoliosis
    Revision surgery, 6th December 2007 T4 to L3, Posterior approach.
    msandham.blogspot.com

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