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Thread: need advise

  1. #1
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    need advise

    Hello, I'm new to this website. I'm needing to extend my fusion to the sacrum. I'm fused from t4-L5. I'm wondering how much mobility I'm going to lose. especially how much different is sex going to be. Am I going to have a harder time with certain positions? Like it seem like missionary would be really hard to do? I really don't know how else to find the answers to these questions. Asking my Dr. would just be weird. So if you could let me know that would be great. The L5-S1 level doesn't give much trouble. I decided to have surgery to fix the non-union in my lower thoracic spine. That is what gives me all the trouble. My Dr. recommends that I have the L5-S1 level fused as the disc is herniated. He predicts this level will continue to get worse. so I should fuse it now. instead of having two surgeries. So I'm trying to decide if I should do it now or later.

  2. #2
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    Why fuse it if it's not bothering you?

    I have not been fused to the sacrum yet; I am really trying to avoid this. I am fused to L3.

    Here's a question: If your lower spine is not bothering you, why would you fuse it? You can always fuse it later or maybe even get an artificial disc should that become more readily available. They are developing new technology all the time.

    Too often on this site, I read of people's surgeons telling them the same line about "fuse the sacrum now because you'll have to do it later and you may as well save yourself another surgery." I really don't think the surgeons are in a position to advise this as they have not had almost their entire spines fused. Also they are seeing this from a purely medical angle, which is to avoid going under general anesthesia again. Could you die under general anesthesia during your future spine surgery to be fused to the sacrum? Sure, but you could also die getting your knee fixed, having sinus surgery, fixing a hip, etc. True, you would spare yourself the pain of being opened up again if you waited to have this surgery, but who says it will need to be done for sure? Maybe you'll just be able to live with the pain from the degeneration, it's up to YOU. Once you're fused there's no going back as we all know. I am in email touch now with a lady from this site who was fed the same line so she fused all the way down on her initial Scoliosis surgery and is now miserable and can't work anymore. However, there are other people like Ed and others who are very happy with their fusions to sacrum. I just say: what's the harm in waiting?

    Also, I believe you mentioned something about the marriage act and fused to the sacrum. A surgeon would know nothing about this as he's not fused. I'm not fused to sacrum either so I don't know. Maybe someone could start a male only thread on this and a female only thread.

  3. #3
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    Are you indeed a male and how old are you? When were you originally fused?

    The L5-S1 is the hardest level to fuse, and if you can wait, make this surgical decision based on pain. Chances are that if you are herniated at this level that you will have problems in the future, but waiting is probably more logical. Get your Thoracic non-union repaired first. My pain levels were 9 and 10 level and completely out of control. My L5 was a triangular shape which was the base of my spine under my S curve. My lower spine was in very, very bad condition.

    I had a Transperitoneal Approach to the Lumbosacral junction, a long vertical cut from the front. All my lumbar levels were fused from the front and rear. PEEK spacers were installed from the front. Usually a vascular surgeon with “extensive” knowledge in this area of the body is used to assist in opening and closing of the area. These surgeries or approaches were performed in Hong Kong back in the 40’s for TB patients so it isn’t new.

    In males, some of the pitfalls that can arise are after opening the parietal peritoneum, dissection of the aorta and the right and left common iliac arteries may cause injury to the superior hypogastric plexus. This injury may result in retrograde ejaculation in males. Injury to large vessels and ureters is also an issue. This approach is only used if a posterior approach is not feasable. Its something to think about.....I am quoting from the “Atlas of Spinal Operations”. (Thieme). This was also explained to me by my surgeons.

    http://en.wikipedia.org/wiki/Superio...gastric_plexus

    If you are interested, I will let you know which books to order on this subject matter. Be prepared because these medical books are NOT cheap. Amazon will have used books available, it is worth searching and waiting for the right opportunity. If not, I suppose I could scan and post or e-mail to you.

    Knowledge and understanding is always of value.... Worry is never of any value.

    Hang in there
    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF 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

  4. #4
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    Yes i'm a male and I had my first fusion 13 years ago. the rods broke 3 years ago. the last three years I have had these disc episodes. I have had about two a year where I do to much bending or something. Then it hurts really bad to the point where I cant stand for longer that a couple of minutes. These episodes last about a week. Where the worst is in the first two days. Then I can return to work after two days. I have a minimal disc bulge and minimal lateral recess stenosis a small annular tear. Also it says the herniation likely presses on the S1 nerve root

  5. #5
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    Not that I need to justify anything, but I think I'm fairly qualified to talk about this. ;-) I was fused T4-L3 in 1993 and then had my fusion extended to the sacrum in 2011. I also work in a spine center that does a very high percentage of complex spine surgeries. As a group, our surgeons do more revision surgeries than primary surgeries. I also think Ed is uniquely qualified.

    It's a very unfortunate fact that a large majority of older adults with long fusion down to L4 or L5, will have to eventually have an extension of the fusion to the sacrum. Whether to roll the dice and not fuse to the sacrum when fusing to L4 or L5 is a very individual decision. I personally really hate the lack of flexibility. It wasn't an option for me, but if there was a small chance that I could have avoided surgery to the sacrum, I'd have to think long and hard about it.

    Sex after fusion to the sacrum is a frequent subject of conversation, and patients do ask surgeons about it. None of our surgeons has had a spine fusion, but they do talk to a lot of patients about it, so they pick up a lot of information. Bubba, I would encourage you to talk to your surgeons about it. I can tell you from the little bit of research that we've done, that there's no consensus. Most people say that sex is different after surgery, but the exact problems have little similarity from individual to individual. The one thing I hear most often is that eventually, everyone seems to get a little creative, and things work out. That's true of all function after long fusion to the sacrum. Necessity is, indeed, the mother of invention.

    Best of luck with your decision Bubba. It's not an easy one. Even though your surgeon is recommending fusion to the sacrum, you can always decide that it's not something you want to do at this time. There's no one right answer.

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
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  6. #6
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    I was given a choice of stopping at L5 or going down to S1. I was told that if we stop at L5, I will be back for a revision surgery in 5-10 years. I decided to get fused to sacrum because I would absolutely hate to go thru another surgery, recovery and disruption that it would cause to my family and professional life. I am glad I made that choice.
    I am stronger than scoliosis, and won't let it rule my life!
    45 years old - diagnosed at age 7
    A/P surgery on March 5/7, 2013 - UCSF

  7. #7
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    kansas
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    thank you everyone, very much. All of this really helps.

  8. #8
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    Linda, could you please elaborate on your comment that you "hate the lack of flexibility" from being fused to the sacrum? It would help me and others to know some details about how being fused to sacrum (as opposed to being fused only to T3) has effected your daily living and what makes you hate the loss of flexibility so much.

    Thanks,

  9. #9
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    Quote Originally Posted by Tableone View Post
    Linda, could you please elaborate on your comment that you "hate the lack of flexibility" from being fused to the sacrum? It would help me and others to know some details about how being fused to sacrum (as opposed to being fused only to T3) has effected your daily living and what makes you hate the loss of flexibility so much.

    Thanks,
    It's a lot of little things that all add up. And, I have to tell you that there are others who do not feel the same limitations. How inflexible we feel is based on the number of levels fused, the tightness of the glutes and backs of the legs, the ability to balance while the body's not centered, the health of one's knees and one's ability to do deep knee bends, etc.

    I think I'm probably far more limited than Ed, for example, even though we have similar fusions. My lack of flexibility is fairly limiting. For example, if I drop something small or thin on the floor, it's difficult to pick it up if I don't have a grabber. If there's something stable to hold onto that's the right height, I can do the same thing that many golfers do to place and pick up their tees. I hold on to a stable object with one hand and swing one leg back and up while bending the other knee and swinging my torso forward. However, in some situations, when there's nothing to hold on to, I can reach down while slightly bending my knees, but I usually have to bounce several time while trying to ti me my grab for the perfect moment.

    I also cannot sit on the floor, with the exception of sitting against a stable object. Even then, it's pretty uncomfortable. And, I look so awkward getting back to a standing position that I never do it in public unless forced to by a circumstance. You'd be surprised at how often one needs to be on the floor to get something done.

    The thing that seems to bug me the most is getting dressed. The problem lies mostly in the fact that from a sitting position, I can only lift my right leg off the ground about 6". In order to put pants on, I have to use a dressing tool and even then it's difficult. I put my left foot in the left leg, and then pull the pants up to mid calf. I cannot hold the pants open and lift my right foot at the same time. So, I use the dressing tool to hold the pants open. Additionally, I have to wear compression socks due to being left with lymphedema from my most recent spine surgery. It is really, really difficult to get compression socks both on and off. I have tools that I use at home, but they don't really fit into a suitcase. The next time I need to travel, I'm going to try sending the tools to myself.

    Lastly, this is a little TMI, but most of our patients with long fusions complain that they can't wipe their own butt. There are ways to get around this, but it's a pretty big deal for some.

    Hope that helps.

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
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  10. #10
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    The only thing that is still difficult for me is cutting my toenails. I usually get pedicures anyway, so it's not a big deal, but if shovel comes to push, I can cut my toenails, they just won't look good. Uh, and sitting on the floor is not comfortable, but I normally sit on a chair or sofa.

    May be my gluts are more flexible, but I don't have any problems picking things off the floor or dressing up or wiping. I do not use any tools. I used to during first six or seven months of recovery, but not anymore. I can even put a pantyhose on. It's silly to even talk about a pantyhose, but if you think about what's involved in putting this delicate, sheer piece of clothing on, you can get an idea about how much flexibility is needed for that task, and I can do it with fusion to sacrum without any help or tools.

    And speaking of that whipping tool, I tried to use it for a couple of weeks after the surgery and threw it away because it was more hussle using that whiper than its worth it.

    I go to a gym at work where some of my coworkers go to as well and I do some exercises on the floor. I am getting on and off the floor in my own, scoliosis survivor way, but it's not atrocious. I don't even think that anybody in the gym notices anything odd about the way I am getting off the floor and even if they do, I don't care.

    We are all very different, many people have said that...
    Last edited by Irina; 11-22-2014 at 11:53 AM.
    I am stronger than scoliosis, and won't let it rule my life!
    45 years old - diagnosed at age 7
    A/P surgery on March 5/7, 2013 - UCSF

  11. #11
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    Another factor... age. :-)
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  12. #12
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    I find this all very interesting, as I'm not fused to the sacrum but have some of the same difficulties as Linda. I think it is the age factor and arthritis in my knees and hips. I don't have a wiping problem, but T2-L4 is still a long fusion and it's a long reach. And I'm thankful I have that little bit of extra flexibility. I have a very difficult time cutting my nails -- it took over a year before I could. I just this past year have stopped using my sock aid and the reacher for putting on my underwear. I do the the golfer's reach (or ballet arabesque) to pick things up or use a reacher. Or go down on one knee, but again, that bothers my knee. I need to have something to hold onto to push against to get back up. It is uncomfortable to sit on the floor and very awkward to get back up. I still haven't bought any lace up shoes although I think I could handle them now. I got in the habit of buying the new balance mule type of tennis shoes... To do the lower books at the library every year I would just grab all the books on the whole shelf and put them on my book cart and then make sure they were in proper order and then put them back, as I couldn't read the spine label at the bottom-- almost at floor level. Now I'm retired and glad I don't have to deal with that. This is probably exactly why I took my 20% chance and stopped at L4. I am so glad I still have just a little more flexibility, I still can get up and down easier than I would have been able to if I had been fused to the sacrum. I have had arthritis for about 20 years now. You younger ones (and older ones without) are fortunate and hopefully will not have to deal with that compounding your already difficult efforts of maneuvering around. I recently stopped taking my arthritis medicine and can feel it in my back more, along with my other joints. I just thought 10+ years on the same NSAID (diclofenac) was probably too long and I would need to suck it up and try to get along. I don't mean to hijack this thread though. My advice would be to stop short if at all possible-- wait until you have to. I gambled and so far, at 7.5 years, my back is looking fine.

    I think some problems might be because I have long legs. ????
    Last edited by Susie*Bee; 11-25-2014 at 08:14 AM.
    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

  13. #13
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    Thank you, Linda, for your honesty about all this. Questions about fusion to the sacrum come up a lot on this site, so if it's all right, I'm going to start a new thread on it and ask you some more questions. That way, it will be easier for others like me looking for this information. Thanks so much,
    T1

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