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Hi all,
I figured I would make another thread for this, because it seems like several people want to know why I am in the situation I am in, and how to avoid it. I had my CT and myelogram today at the Twin Cities Spine Center and also saw Dr Transfeldt for the second time. Here is what I learned:
For those who don't know my history, I had 2 laminectomies/ tethered cord/lipoma removal surgeries, one at age 2, one at age 20. I had my t-10 to pelvis fusion in November and December of 08, the titanium rods broke and I had a revision in November of 09 with vitallium rods, said to be 1.5 times stronger than the titanium ones. Adding to the complications I had a deformed sacrum, as well as a hemi-vertebrate. Post surgery I was told to walk 10 to 15 miles per day (at least to work up to it), and I did, I believe I reached the 10 mile mark about 4 to 5 months out of the posterior surgery. I had tons of problems with braces and shoe lifts with the first surgery. I have been wearing a 2 cm shoe lift from the time of the original posterior surgery on. I had pretty much NO luck in trying to convince my surgeon that I had broken my rods again, and his office has been AWFUL with returning calls. I have since switched my care to the Twin Cities Spine Center, after consulting with another local surgeon and not feeling very confident in him. I am roughly 4 hours from the TCSC. I just found out that I am allergic to most pain medication, and have gone from hydromorphone to nothing recently. BMPs were used during all three fusion procedures (anterior, posterior, and revision). I also have one "cage" in at L5/S1. After the revision, I used a spinal stimulator to try to achieve more bone growth.
I think thats a pretty good overview, but if I missed something I am sorry. I am on a pretty big dosage of benedryl at the moment.
Today it was confirmed that I am only fused solidly at L5/S1. My rods are broken at L4/L5 so there is a non-union there, I also have non unions at L3/L4, L3/L4, most likely L1/L2, L1/t12, and possibly t11/t10. So, pretty much everything but L5/S1.
Another issue that came up is that my tethered cord is still tethered, we were under the impression that it was not. One thing that was mentioned is that it is a possibility that the tethered cord might be adding stress to the fusion and possibly causing some of the issues, however it would not cause all of it, especially the upper non-unions.
The extreme amount of walking and biking I was told to do was not the reason that I had a non-union, but it did probably contribute to the rods breaking so quickly each time. Since everything is still un-fused, even the parts that held, there is something else going on.
I was told I had a leg length discrepancy of 2cm and have been wearing a shoe lift for the last few years. After taking xrays with and without the lift today, it appears that my midline becomes slightly more "off" when wearing the lift, though it didn't make a ton of difference either way in the xray. It appears I never really needed a lift afterall.
It sounds like the fusion was done, for the most part, correctly, but that it is possible that the area wasn't "prepared" the way it should have been. As Dr T put it, "you can't just splash some BMPs all over the place and expect it to grow where you want it to".
I was told once by the surgeon that I had so many problems with (that did the fusion and revision) that the popping and grinding I was feeling was not from broken rods, but that I had "too strong" of bones and since my pelvis wasn't allowing the flexion that a normal pelvis would, the bolts were chipping out some bone fragments, eventually it would chip out enough to move freely and no longer cause problems. This was untrue. It was the broken rods that were missed on the xray popping and grinding
So all that leads up to, I had too much going on for the amount of work that was done. The area wasn't prepared well for fusion, the rods broke early because of the amount of walking. The lift didn't do any good, but probably didnt do much in the way of negatives either.
The new plan:
anterior/posterior procedure, posterior will be first to check all of the screws, but it appears from all of the films that they are in good shape. Then they will prep everything, clean everything off, and assess the areas in terms of the amount of fusion that occurred. They will put in new rods, and possibly more screws, since I do have a gap. There is apparently an alloy that is stronger than vitallium, they will be using that. After that, depending on the amount of work that needs to be done, they will do either a minimally invasive or a full anterior/side procedure with XLIF in each of the non-unions that require it. Depending on how long the posterior surgery is and how complex the anterior/lateral surgery it will either be done in two parts, roughly 4 days apart, or on the same day.
Anyhow, that is pretty much it. Hope that clears up some questions.
I figured I would make another thread for this, because it seems like several people want to know why I am in the situation I am in, and how to avoid it. I had my CT and myelogram today at the Twin Cities Spine Center and also saw Dr Transfeldt for the second time. Here is what I learned:
For those who don't know my history, I had 2 laminectomies/ tethered cord/lipoma removal surgeries, one at age 2, one at age 20. I had my t-10 to pelvis fusion in November and December of 08, the titanium rods broke and I had a revision in November of 09 with vitallium rods, said to be 1.5 times stronger than the titanium ones. Adding to the complications I had a deformed sacrum, as well as a hemi-vertebrate. Post surgery I was told to walk 10 to 15 miles per day (at least to work up to it), and I did, I believe I reached the 10 mile mark about 4 to 5 months out of the posterior surgery. I had tons of problems with braces and shoe lifts with the first surgery. I have been wearing a 2 cm shoe lift from the time of the original posterior surgery on. I had pretty much NO luck in trying to convince my surgeon that I had broken my rods again, and his office has been AWFUL with returning calls. I have since switched my care to the Twin Cities Spine Center, after consulting with another local surgeon and not feeling very confident in him. I am roughly 4 hours from the TCSC. I just found out that I am allergic to most pain medication, and have gone from hydromorphone to nothing recently. BMPs were used during all three fusion procedures (anterior, posterior, and revision). I also have one "cage" in at L5/S1. After the revision, I used a spinal stimulator to try to achieve more bone growth.
I think thats a pretty good overview, but if I missed something I am sorry. I am on a pretty big dosage of benedryl at the moment.
Today it was confirmed that I am only fused solidly at L5/S1. My rods are broken at L4/L5 so there is a non-union there, I also have non unions at L3/L4, L3/L4, most likely L1/L2, L1/t12, and possibly t11/t10. So, pretty much everything but L5/S1.
Another issue that came up is that my tethered cord is still tethered, we were under the impression that it was not. One thing that was mentioned is that it is a possibility that the tethered cord might be adding stress to the fusion and possibly causing some of the issues, however it would not cause all of it, especially the upper non-unions.
The extreme amount of walking and biking I was told to do was not the reason that I had a non-union, but it did probably contribute to the rods breaking so quickly each time. Since everything is still un-fused, even the parts that held, there is something else going on.
I was told I had a leg length discrepancy of 2cm and have been wearing a shoe lift for the last few years. After taking xrays with and without the lift today, it appears that my midline becomes slightly more "off" when wearing the lift, though it didn't make a ton of difference either way in the xray. It appears I never really needed a lift afterall.
It sounds like the fusion was done, for the most part, correctly, but that it is possible that the area wasn't "prepared" the way it should have been. As Dr T put it, "you can't just splash some BMPs all over the place and expect it to grow where you want it to".
I was told once by the surgeon that I had so many problems with (that did the fusion and revision) that the popping and grinding I was feeling was not from broken rods, but that I had "too strong" of bones and since my pelvis wasn't allowing the flexion that a normal pelvis would, the bolts were chipping out some bone fragments, eventually it would chip out enough to move freely and no longer cause problems. This was untrue. It was the broken rods that were missed on the xray popping and grinding
So all that leads up to, I had too much going on for the amount of work that was done. The area wasn't prepared well for fusion, the rods broke early because of the amount of walking. The lift didn't do any good, but probably didnt do much in the way of negatives either.
The new plan:
anterior/posterior procedure, posterior will be first to check all of the screws, but it appears from all of the films that they are in good shape. Then they will prep everything, clean everything off, and assess the areas in terms of the amount of fusion that occurred. They will put in new rods, and possibly more screws, since I do have a gap. There is apparently an alloy that is stronger than vitallium, they will be using that. After that, depending on the amount of work that needs to be done, they will do either a minimally invasive or a full anterior/side procedure with XLIF in each of the non-unions that require it. Depending on how long the posterior surgery is and how complex the anterior/lateral surgery it will either be done in two parts, roughly 4 days apart, or on the same day.
Anyhow, that is pretty much it. Hope that clears up some questions.
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