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Jean1020
12-28-2013, 08:06 PM
Having a surgical consult with Dr. Lebl at HSS Jan 16. I wondered if there were any good websites to review ahead of time on the pros and cons of how far down the spine to fuse? I want to understand that better, and also the pelvic fixation- what exactly does that mean?

LindaRacine
12-29-2013, 01:12 AM
Hi Jean...

Whether or not to fuse to the sacrum is based on your specific anatomy. If it's an option, your surgeon will be able to give you the pros and cons specific to your situation. In general, fusion to the sacrum = significant loss of flexibility and fusion to a higher level= high risk of needing additional surgery to the sacrum at a later time.

All of the top surgeons are now adding fixation to the pelvis in the vast majority of patients who need to be fused to the sacrum, to avoid the potential of a sacral fracture. The screws used for this purpose are usually placed between the sacrum, across the sacro-iliac joint, and into the pelvis. Some doctors usually place only one screw into the pelvis, to lessen the risk of needing to remove one or both screws because of prominence, while other surgeons almost always place two screws, one in each side. You can see a fusion to the sacrum, with pelvic fixation, HERE (http://synapse.koreamed.org/ArticleImage/0032JKNS/jkns-48-347-g002-l.jpg).

--Linda

susancook
12-29-2013, 01:32 AM
Linda, it was my understanding the the screws do not go across the SI joint and that the SI joint is not affected.....or do I have that wrong?

Re: fusion to the sacrum, my lumbar joints were quite degenerated, as is the case with many of us older folks, so fusion to the sacrum and fixation makes a lot of sense. I know that Irina, who is only 44 was given the choice, based on her anatomy of whether she wanted fixation to the pelvis or not with the possibility of another surgery later for the fixation if it was not done with the surgery.

Susan

tae_tap
12-29-2013, 06:48 AM
I am 35 and went to the sacrum. Dr. Lenke and Dr. Kelly both said I could stop at L5, but it was a significant chance I would be back in 2-5 years to do the sacrum. So I just said fix it all. They did have to start at T2 once they got in due to the amount of arthritis and the collapsing of T2-T3. And I do have pelvic fixation, but 6 weeks out and I can put my shoes and socks on and tie them. It's not the most comfortable thing, but I was even able to trim my nails

Tamena

leahdragonfly
12-29-2013, 10:47 AM
Hi Susan,

I think you are mistaken about the SI joint being unaffected by pelvic fixation…the screws cross the SI joint and are affixed into the ilium. Linda posted a good x-ray showing pelvic fixation above.


Tamena,

I am fused T8-sacrum and still have to struggle to cut my toenails --- I am really curious how you do this and put on your socks easily at 6 weeks (on restrictions??)? Maybe I can learn something from you!

titaniumed
12-29-2013, 11:10 AM
Jean

Here is one from HSS by Br Boachie....


http://www.hss.edu/professional-conditions_adult-scoliosis-low-lumbar-degenerative-disease-spinal-stenosis.asp


The long fusion to L5 patients don't do very well, so I am very very careful in selecting them. I have probably done five L5 fusions in adults. This patient is still doing very well; a couple of others are still hanging in there, but what happens is, it just shifts all the load to the 5-1 so it doesn't take long for 5-1 to degenerate and become unstable. So in most cases we extend the fusion to the L5-S1 level, to avoid refusion and extension.

If you look at my x-rays in my signature, the longest screws down at the bottom are pelvic anchors.

Ed

tae_tap
12-29-2013, 01:43 PM
Hi Susan, I think you are mistaken about the SI joint being unaffected by pelvic fixation…the screws cross the SI joint and are affixed into the ilium. Linda posted a good x-ray showing pelvic fixation above. Tamena, I am fused T8-sacrum and still have to struggle to cut my toenails --- I am really curious how you do this and put on your socks easily at 6 weeks (on restrictions??)? Maybe I can learn something from you!

I was using the sock aide but still found myself bringing my foot up to pull the sock up. I found it easy to sit in my lift chair and have it up and tilted to do these things. I have a little harder time with my left foot only due to nerve issues that have not gone away completely, but I hope I'm not breaking any restrictions.

Tamena

LindaRacine
12-29-2013, 02:27 PM
I think there are many things that affect flexibility including the number of segments fused, the flexibility of the hips, the elasticity of the leg muscles, etc.

Susan, the S-I joints aren't typically fused, but the screws cross the joint.

--Linda

Irina
12-29-2013, 05:16 PM
I was given a choice of fusing to either L5 or sacrum because my L5 was in a gray area. The doctor told me that if we stop at L5, I'll be back for a revision and extension to sacrum in 5-10 years. I hesitated for a moment thinking about losing flexibility and she asked me: "How would you feel if you'd have to go through another surgery in 5 years?". I said that I would absolutely hate it and Dr. Hu said: "Here is your answer". We went to the sacrum and I am glad we did. I can still do anything I need to do, but a bit differently. I am 45 and not being able to do rumba or cha-cha is not the end of the world for me :-)

susancook
12-29-2013, 09:46 PM
I found an article and YouTube video that I thought demonstrated the screws going into the pelvis only, not into the SI joint. I will look at it again, maybe I misunderstood. Susan

scooter950
12-30-2013, 09:02 AM
Hello friends, right now the surgeon recommends fusion from T 2 to L 4 because L2-L3 are "bone on bone"/ my concern- my knees are shot, I cannot squat at all - too much pain and stiffness, but I enjoy getting on the floor with my dogs. how do you get up off the floor with a fused spine? I will discuss this with PT and maybe we can actually practice before I am discharged. I am paralyzed by fear of the unknown but .... as Bilbo said in LOTR "I've put this off for far too long" ! I will meet with my surgeon next month. thanks to all for sharing - I love this forum! Jamie in TX

Susie*Bee
12-31-2013, 03:23 PM
Scooter-- I am fused T2-L4. My surgeon felt I had an 80% chance of not needing further surgery, so we played the odds. He felt it would be of more benefit to have that extra flexibility, but left the decision up to me. I must admit a few things... I find myself to be fairly careful not to do repetitive bending, because I don't want to go back for more surgery, and that is what will cause the wear and tear on those lower lumbars. I have also noticed that some people who are fused completely have said they have no weight restrictions, whereas I do-- and I can tell (it begins to bother me) if I am trying to hold or lift more than about 20-25 lbs. That being said, I still think I have more flexibility and I think that is beneficial. It may be one of those "six of one, half a dozen of the other" sorts of things. You give up flexibility entirely but are more stable and have no fears or restrictions, or you are more flexible but need to take care of yourself.

As for getting down on the floor... I also have arthritis in my knees and hips, although do pretty well since I take diclofenac for that. I am a librarian and need to get down to the bottom shelves (and read the spine labels which are at the bottom end of the books) and I can do it alright as long as there is something that is stable that I can use to help myself back up. I don't squat, but go down on one knee. You can probably then just move to a sitting position, but I find that uncomfortable. I also would need to make sure that sitting position would allow me to grab hold of something when it's time to get back up. Best wishes for you! And where there's a will, there's almost always a way.

gerene
07-30-2014, 03:11 PM
I am 4 months post op from t-10 to pelvis fusion and cannot cut my own toenails. Will my flexibility improve as time goes by.

golfnut
07-30-2014, 06:09 PM
I am fused T4 to the sacrum and my flexibility has definitely improved even after my 2 year anniversary. I would advice you not to attempt to reach your toenails this early in your recovery. I can trim my toenails by crossing on leg over the other knee or by propping up a foot on a chair, but enjoy having a pedicure instead. I still used a razor with a foot long handle attached at 4 months. Be patient and improved flexibility can come later when you are fused. Don't rush it now.

jrnyc
07-31-2014, 10:28 AM
hey Jamie...
you have all my sympathy...i have bad knees as well...
and now bursitis in left hip, caused, they tell me, from uneven
loading of spine due to scoli...ugh....falling apart...
BUT...am allergic to NSAIDS...
when i took diclofenac, (which i should not have even been given)...
it took away at least 50% of my pain....now i cannot take any NSAID....

i think patients are not allowed to take NSAIDs for a while after
surgery....but i think you can then go back to taking them after
everything has fused....

just thinking they might help you, whenever you are allowed to
be on them...

best wishes...and all my sympathies...
jess....and Sparky

susancook
07-31-2014, 05:58 PM
The question is "should I be fused to the pelvis"?

The first answer is: what does your surgeon recommend?

If he/she recommends fusion to the pelvis then
A) how much pain do you have and you have decided that pelvic fixation is not for you...and your pain level is
1) "not too much" then do nothing about having surgery

But if your pain level is:

B) "A LOT of pain"
1) find another surgeon that will do whAt you want and not do a pelvic fixation.

My trade: pelvic fixation so that I could be pretty much pain free with very minor if at all limitations.

Susan

LindaRacine
07-31-2014, 09:23 PM
I am 4 months post op from t-10 to pelvis fusion and cannot cut my own toenails. Will my flexibility improve as time goes by.

Hi... I think most people with T10-pelvis fusions are eventually able to cut their toenails. Unlike Golfnut, I am unable to cut my toenails with a T4-pelvis PSIF. BTW, I personally think that trying to cut your toenails at 4 months postop might be pushing it a bit. While many doctors remove most restrictions at 3 months postop, I think things that really pull on the fusion should probably wait until 6-12 months postop. I noticed improvement in my flexibility all the way until I was about 2 years postop.

--Linda

susancook
08-01-2014, 01:40 AM
Cutting toenails? I personally would not recommend that anyone try this until 1 year post surgery. Gayle made an interesting comment that she thought that her back bends a little now. Well, I am glad that she said that because at about 14months, I tried AGAIN to cut my nails, was amazed that I could, and then noticed that my back does bend without any pain....ever so slightly. Not much, just a little bit....enough to cut my toenails. When I had previously tried to stretch and cut my nail, it did hurt. Then, at about 14 months, no pain.

Yes, occasionally in the first 12 months, I did forget that I should not bend, and when I tried even a little I did experience immediate slight pain.

Like everything else in scoliosis, so much is individual. There are probably things that Linda can do that I cannot do.

Susan

tae_tap
08-01-2014, 07:34 AM
I think the cutting of the toenails really depends on the flexibility of ones leg muscles. I am almost 9 months post-op and have been able to bring my feet up to trim my nails. I have not had a problem putting socks and shoes of from the get go but being younger than some might add to the ability to manipulate my legs to do what I need.

As far as to fuse or not to fuse to the sacrum for me was the possibility of having to revise later down the road to add just the little bit. I did not want to risk a third surgery and so far do not regret my decision to just do it all.

Tamena

leahdragonfly
08-01-2014, 08:32 AM
I am fused T8-scarum, and at 4 months I thought for sure I would never be able to cut my toenails. I even posted that very question at some point during the first year.

I gained a lot of flexibility between 1-2 years, and even after the 2 year mark, as Susan mentions above. At the 2 year appt I was released from restrictions (mine were very long due to a complex revision following broken rods), and I think I finally let go of a whole lot of fear and anxiety about breaking my rods a second time. This stuff preys on your mind over time. After the 2 year mark I started cautiously trying more movements and was really happy to find I had a lot more mobility than I had thought. I can now cut my toes nails, shave my legs, etc.

I agree with the others to take it easy on these sorts of activities until after about the 6 month mark or so, or at least until your doctor lifts the no bending/twisting/lifting restrictions. I can't recommend the broken rod revision as a fun activity…

Take care,