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Thread: Would like input from anyone fused to L3/L4 or lower

  1. #1
    Join Date
    Sep 2003
    Location
    Maryland
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    Would like input from anyone fused to L3/L4 or lower

    I am looking for input from people who have lived with being fused to L3 or L4 for a number of years. My 12 year old daughter was fused almost a year ago from T6-L1. Her lower curve extended below L1, but the surgeon was hopeful that he would get good results without having to fuse so low at her young age; hopeful it would turn out to be a residual
    curve and would self-correct. It has not corrected as much as he'd hoped - from 47 degrees to about 35 degrees. Her upper curve responded well to surgery, from 65 degrees to about 20 degrees.

    The question of revision surgery, extending the fusion to L3 or L4 is on the table for now. Her right hip flares upward and toward the front, and gives her a sort of uneven look. She wears a lift in her left shoe, in an effort to help balance her out. Also this past year she wore the brace after sugery for awhile, and also had physical therapy. Still did not get the results with the lower back. The doctor's concern with the revision surgery is that, further down the road, her remaining unfused vertebrae below will degenerate and she will wind up needing further surgery. By the way, we trust our
    surgeon implicitly; he was the second opinion we sought a year ago. He is William Lauerman at Georgetown University, and did his fellowship in Minnesota which, as I recall from one of Linda Racine's posts, is a plus.

    Here is what I would like to know from anyone who has lived with such a low fusion for a number of years...
    How flexible are you? Can you do things like tie your shoes?
    How is your back years later - did you, or will you, require fusion to your sacrum?

    She has recently been complaining of pain in her tailbone area and right leg. She sees her doctor in a few weeks and I will bring it up with him. Does anyone have an opinion on whether this is due to the lower back situation?

    Thank you-
    Judy

  2. #2
    Join Date
    Sep 2003
    Location
    Northern California
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    6,801
    Hi Judy...

    I actually think there are two things that determine flexibility in a fused spine: the length of the entire fusion, and how low the fusion goes. For example, someone fused from T11-L4 (6 vertebrae) would probably be a lot more flexible than someone fused from T4-L3 (11 vertebrae).

    My fusion (T4-L3) was about 12 years ago. While I am somewhat less flexible than I was before surgery, I was pleasantly surprised that I was more flexible than I had expected. I can tie my shoelaces. The only times I notice the loss of flexibility are when I do things like trying to put on pantyhose, getting up from sitting on the floor, etc. I can still do those things, it just takes more effort than before, and it probably looks funny.

    In regard to your question about whether I'll need fusion to the sacrum, i certainly hope not. My first free disc below the fusion (L3-L4) is shot. While it does cause some lower back pain, I can keep the pain mostly under control by doing daily physical therapy exercises (abdominal strengthening). The discs below L3-L4 still look great.

    With all that said, I personally think you're right to question whether the surgery is appropriate. Someone with a 35 degree lumbar curve would not normally be a good surgical candidate. If she were my daughter, I'd want to try to find out why she's having pain in her tailbone and leg. If it's because of the lumbar curve, than it might make sense to go ahead with extending the fusion. If not, I'd probably want to know if it was wise to wait and see if the lumbar curve remains stable or increases.

    Regards,
    Linda
    Last edited by LindaRacine; 06-10-2004 at 04:52 PM.

  3. #3
    Join Date
    Apr 2004
    Location
    new jersey
    Posts
    323
    Dear Judy,

    Doctors do measurments before surgery to make sure the amount of fused vertabras are balanced to the degree of curve...if one is fused to short than the curve is unbalanced and the spine becomes unstable, curve and may need a revision like your daughter...Even tho you trust your surgeon please seek another opinion..
    Also, fusing more verabras means the lose of those dics and flexiblity...advance technology is not far behind for artifical disc replacement...check into that....
    good luck
    CONNIE


    Surgery June 28th 2004
    fused T4 -L3
    Hip graft
    Grown 1 1/2 inches
    25/o upper T 15/o
    53/o T 15/o
    37/o L 6/o
    Dr. Micheal Nuewirth
    New York City

    August 6, 2004
    Pulmonary Embolism
    complication from surgery

    January 2007 currently
    increasing pain at the T4/5
    point irratation heardwear

  4. #4
    Join Date
    May 2004
    Location
    Florida
    Posts
    13

    Fusing L3 or lower

    Hello Judy.

    My fusion is T-1 thru L-5. I had it done 23 years ago by Dr. David Levine at Hospital for Special Surgery in NY. I was 34 at the time. I had my first surgery T-1 to T12 when I was 13.

    I do have some flex issues, but nothing that has been a big problem. I can do things, but with just a little more difficulty than other folks. Until my hips went bad 2 years ago, I could tie my shoes, etc. I had both hips replaced last July and have hade excellent results from that.

    Every Dr. I went to over the years was always amazed at how good my range of motion was. Like Linda said, part of the key is therapy. If your daughter is not doing therapy now, I would surely make that one of the first things I'd be talking to the Dr. about. Remember, it is your muscles that move you. Your daughter needs a top notch therapy program that she should follow religiously for life. I have found aquatic programs and walking to be most helpful over the years, but any good program designed for your daughter's condition would be helpful. Strengthening and stretching those muscles is critical. And if she does need more surgery, now or later, she'll be in much better shape for it and speed her recovery.

    As for the surgery to L-3 or lower...I think I'd like answers to why she is having pain in the leg and tailbone first. And see if exercise helps that any. And even though you like your surgeon...I still would get another opinion. The DuPont Institue in Delaware might be worth checking into. I know years ago they were doing a wonderful job with kids with scoli. I don't know where they stand now in that respect. Linda Racine might know.

    My situation now is probably going to require additional surgery in the next year or so. L-5 and S-1 are in dreadful shape along with a whole bag of other problems...stenosis, bulging discs, etc. But I've had 22 pretty good years. Would I have done anything different? No. That last surgery gave me my life back. I was 4-5 years from being in a wheelchair for life. In the 20 years between the first and last surgery, I had lost 6" of height and they said nothing could be done...until I found the right Dr. I believe you are doing the right thing by investigating all your options and learning as much as you can.

    Good luck with everything. Kathi

  5. #5
    Join Date
    Sep 2004
    Location
    north Georgia
    Posts
    20
    Dear Coolspring, I have been fused down to L-3 for 20 years, and I'm 39 yrs. old now. And even though my spine starts out crooked and rotated, they didn't want to fuse down any further than they absolutely had to. Now I understand why.

    I feel that I am pretty flexible. I still have hip movement and feel that I walk "normally". I can still bend down and touch the floor, however I have very little flexion from side to side or backwards and attempting to bend (to side or back) is very painful.

    Will I eventually have to be fused to the sacruum? most likely; because I have collapsed discs and bone overlapping bone, but I will say that my daily pain for the first 17 1/2 years was manageable, if I did what I knew I needed to do, like lie down flat with my feet up every chance I got.

    Personally, I would hold off on an extention of the fusion until it was Absolutely necessary (despite the curvature). Being fused to L-3 only gives me 3 discs to take the pressure of my entire spine; which is more than those discs/vertebrae were designed to withstand. I hope this makes some sense.

    And it's very important for us to have the natural curvature in our lower back (which I don't have). I think, now days, they factor that in.

    And I also agree with the other feedback you've gotten (Linda/Kathi/Spincon58). Physical therapy can do wonders and some type of regular strengthening exercises for maintenance.

    Keep getting opinions and more opinions.

    Hope some part of this is helpful to you. Good Luck to you and your daughter.

    Camille

  6. #6
    Join Date
    May 2004
    Location
    Cambridge, Canada
    Posts
    15
    Judy,

    I am 27 years old and had my spine fused at 13 year of age (1990). I am fused from T4 to L3 (12 vertebrae). I have 2 vertebrae left on the bottom of my fusion and basically my neck. I was fairly OK for the last 14 years and only in the last year have had a lot of pain. Like Camille has, I have no natural curvature of the spine and the two fusion endpoints take on all movement of the spine. I now at 27 have osteoarthritis as the bone that is fused is not used, it loses it's density much faster than a normal spine. I do have a lot of pain that I never expected to and yes, the remaining vertebrae will eventually degenerate since there is a lot of pressure and unnaturalness to my spine. They will not fuse any more at this point because of my age. It may help for the next 10-15 years for my pain, but then the next 2 endpoints will start to breakdown. It is very important for your daughter to follow a therapy program. Try an aquatic one - it takes the pressure off the spine and it has really helped me, but make sure it is a warm pool and if possible an arthritic class as there is much less movement as an aquafit. I do have limited mobility and I won't be able to ride a horse or play contact sports, or ski, but otherwise I have lived a very normal life. I took gym in highschool (it was a little limited) and I do look funny doing some things as my back is perfectly straight.

    I can't imagine how difficult a decision this must be as a parent; I know mine had a hard time. How is your daughter dealing with all of this? I sure had a hard time and if she needs someone to talk to, the door is always open.

    Take care and good luck!

    Lisa

  7. #7
    Join Date
    Oct 2004
    Location
    Boston, MA
    Posts
    1

    L3/L4 Fusion

    Judy,
    Your decision is a difficult one, but maybe sharing my experience will help.

    I was fused at L3/L4, with a Harrington Rod, 37 years ago at 14 years of age. I have not had any trouble with flexibility. I have found maintaing flexibility to be a function of how much time I spend stretching my muscles.

    I have, however, begun to have trouble with severe back pain.

    My first experience with back pain was 18 years ago. At that time it was speculated to be the result of inflammation so I was treated with a heavy dose of steroids, which eliminated the pain and inflammation, and then sent to physical therapy to build up my back muiscles in the hope that would prevent the inflammation from returning in the future, and for more than 10 years it did.

    But, several years ago I began again to experience back pain and weakness affecting my ability to walk for periods of time.
    A CT-CAT scan and xrays 2 years ago, however, showed my fusion, Harrington Rod and discs to all be in great shape, yet I have the pain nevertheless.

    Unfortunately, 13 years ago I received a diagnosis of MS. Until that time I was able to participate in most athletic activities I chose to, including skiing.

    The doctors are unable to say whether or not the MS is causing the pain and weakness, or the Scoliosus, but it is likely that my difficulties are related to an interaction of the two. Even with the diagnosis of MS I have no problems with flexibility although the fusion does limit hip movement ( I can't Salsa )

    I try now to swim regularly and continue to work with a physical therapist. Although I am not very disciplied about exercise I make sure I am staying as flexible as possible by stretching my muscles as often as possible. When I start to have difficulty tying my shoes I spend extra time stretching out the muscles in the back of my legs. And when my back aches I spend more time stretching those muscles as well. The fusion does not impede my ability to do this, even today.

    Best of luck.
    JoJo7

  8. #8
    Join Date
    Oct 2004
    Location
    Philadelphia
    Posts
    1

    fusion

    Hi. My name is Maureen, I had surgery 23 years ago. I was 12, with a s curve and The top was over 100 degrees, and the bottom was 50. Surgical correction brought me down to f4 degrees, and 30 respectively. I am fused from T 2 - L3. I have two children and I am a R.N. in an outpatient surgery center. I started having problems with hip and MAJOR sciatic pain about 2 years ago. Now it is pretty much consistent. I see a specialist in 1 week. Thepoint of my history is to tell you that, your daughter will have a normal life. The second point is that what happens in elogated fusions is that above and below the fusions take all the pressure of the spines movement, that is why they don't fuse anymore to that level . I have 3 herniated discs in my neck, 2 in the lumbar spine right below the fusion. So your Doctor knows what he is doing. Exercise and P.T. will be beneficial to your daughter, and so will an anti-inlammatory med like motrin or bextra. Goodluck!!!
    maureen

  9. #9
    Join Date
    May 2004
    Location
    Michigan
    Posts
    75
    Good afternoon,
    My whole spine is fused except one little old vert in the lower L3 community, this was to allow for some movement or flexibility. After fifty (50) years of good use, it has finally signaled enough all ready, but what I'am trying to express is your daughter should be able to do what every she wishes to accomplish in life. I know it is difficult as a parent because I'm one also with a daughter with scoliosis and a rod, but childhood is so important and feeling good about yourself is part of it. See beyound the line and empowerment is part of our tool. I was also in the military, and played sports, it was not easy because acceptance was an issue. In fact it took a act of congress to get me accepted into the military, my scoliosis is now severe and progressive, with stenosis. But I did it my way...funny. But I did and so can your daughter...God Bless.

    Bill
    Live long and prosper!

  10. #10
    Join Date
    Nov 2004
    Posts
    216
    I am fused from T-9 to L-5. Although I can not bend straight over and probably will never bend more than 90 degrees from hips, I can squat and pick up things faster than most can bend over and pick up. I have noticed that sometimes I only squat and sometimes I do a combo...bend at hips and squat half way. I can tie my shoes, which was accomplished only after I went to Physical therapy and was shown an exercise to be able to cross one leg over the other and tie shoes. Most of the time I just place my feet on a higher level(counter or on a chair) to tie them. It is amazing how you can overcome most obstacles. I do not consider myself limited in any area except bending straight over.

    Kindest Regards,
    Gail

  11. #11
    Join Date
    May 2004
    Location
    Michigan
    Posts
    75
    Good morning,

    Bending for me is like bending like a board at the hip, I can't touch my toes anymore and it is not because of the weight. My curvature is no severe it does not allow me to stand very long or walk any great distance. But I sure can relate to your story, keep the faith and keep advocating for your rights as an individual.

    God Bless....
    Live long and prosper!

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