The pop that was hear around the world

[titaniumed]

he told us that sometimes things look like they are fused solidly and rods can still break. My understanding is he feels that since the front of L5-S1 has never been fused, there must be potential movement there that is enough to break the rods and cause pain.

This confirms that my memory is still intact from material I read many years ago about 360 degree fusions and how they balance out.

Integrity of fusion also plays a huge part. One could say we are fused, but are we? Do we need to take it easy or easier even though we have a green light? I think about this often......

Why is it that we work as much as possible? This is another thing that I think about often.....I’m supposed to be disabled to some degree, (my hospital thinks so) and I work 3X harder than normal people do. There is going to be a point when we are going to have to learn to slow down.....I hope someday I can accept this.

I agree that pain is very strange by the way it cycles.....It almost like we exasperate soft tissue’s and have these delayed pain responses. Sometimes it’s days later.

Try to take it easy Gayle and lets hope your pain subsides.....

I also think you are lucky to have Dr Hart....I have watched videos of him and I like the guy.

Ed

[leahdragonfly]

Integrity of fusion also plays a huge part. One could say we are fused, but are we? Do we need to take it easy or easier even though we have a green light? I think about this often......Ed

I think Dr Hart was saying this also…that they are now learning there can be areas or levels that look perfectly fused, but somehow rods can still break there. Not just in me, he has seen this before. I wonder if that means the fusion is functionally insufficient. He also told me he now uses heavier rods than the ones I got 3 years ago. Not sure how big. The first time I broke one titanium and one cobalt chrome, which was new at the time. The second set I think is two cobalt chrome rods.

You also raise a very interesting question about what we can really do after a successful fusion…you have done incredible things with your rods and gotten away with it. Some of the younger members considering surgery talk about wanting to do all sorts of vigorous sports and activities after surgery. I guess there's no way to know who can get away with that, and who like me will break rods doing mundane household activities. Although I do admit I have done plenty of bending since the two year mark, because it felt fine and because it is incredibly inconvenient to not be able to bend from the waist. I guess there will continue to be a whole lot more squatting instead of bending in my future.

[titaniumed]

At Linda’s scoli meeting at UCSF a few years ago,, I cornered Dr Burch at the coffee machine and we talked about this matter.(Integrity of fusion) He mentioned that they would go in on revisions and find out that fusions wouldn’t take or have varying consistency. That’s where they REALLY find out what has happened, AFTER they get in there. It would be nice if someday they can figure out this conundrum. I don’t know if they have done studies but it would seem logical that age plays a strong role.....Bendy Bill stated that he felt he was fully recovered in 3 months at age 25. Its hard for me to forget these things......wow! Age 25, 3 months, Age 50, 2 years.

Dr Menmuir did partial corpectomy procedures on me, that’s a scraping of the end plates from the front which helps guarantee fusion. End plates do degenerate upon DDD and wont bleed which is needed for fusion to occur. This is a Dr Bradford procedure.....So, I had clean surfaces and 13mm PEEK spacers used with BMP on my ALIF. You might mention this to Dr Hart and see what he thinks...

Communication between Patient and Surgeon and Non Patient and Surgeon changes. When we are in pain and we are scared, we get emotional. Surgeons pick this up and change responses to questions. The patient can also only absorb so much......Every single time I talked with my surgeon, I was in major pain. This had an effect on the patient-surgeon relationship that kept many answers short. Now that I have a much better knowledge, I can hold my own since I have learned quite a bit through the years. My surgeon congratulated me on this since reads here. (smiley face) It’s a great way for surgeons to find out how we feel about things.....

Adults also need to have a “controlled recovery” of some sort. You can take things easy for a long time, fuse 50% lets say after 6 months, get released and break the fusion and have the rods hold for an extended period of time and then break. I never got released to be honest. I did walk on eggshells and simply walked for a long time, and didn’t want to push too hard. All my bending stretches on a stool started very slowly at around 8 months, and went slow since I was scared to death of disturbing my fusions in my lumbar spine. Having a broken shoulder and arm helps slow the scoli patient down. My recovery could have been different if this had not happened.

Actors will say “Break a leg”

I say, “Break an arm”

(smiley face)

Ed

[leahdragonfly]

Communication between Patient and Surgeon and Non Patient and Surgeon changes. When we are in pain and we are scared, we get emotional. Surgeons pick this up and change responses to questions. The patient can also only absorb so much......Every single time I talked with my surgeon, I was in major pain. This had an effect on the patient-surgeon relationship that kept many answers short. Now that I have a much better knowledge, I can hold my own since I have learned quite a bit through the years. My surgeon congratulated me on this since reads here. (smiley face) It’s a great way for surgeons to find out how we feel about things.....Ed

That's interesting you mention that, Ed. Susan had mentioned that Dr Hart swings by this site occasionally. Dr Hart surprised me by asking me if I still blog on this site. He said he had seen my posts before! I'm glad I never had anything bad to say about him. It never occurred to me that these very busy, top surgeons would take the time to read patient posts here, but it does make sense. I guess it really does offer a unique insight into what their patients think and how they have absorbed and processed information.

Dr Hart, if you're reading this I'm having an extremely painful weekend which makes it easy to consider having my revision sooner rather than later. I will be in touch.

Thanks Ed for all your support here. It is always greatly appreciated.

[susancook]

Re: fusion or not? Of course the question of, "Do you see fusion" is one that most of us ask at the first year visits. From my reading, I don't believe that one can "see" fusion, but probably lack of fusion.

I asked Dr. Hu if she saw evidence of fusion in my spine, and she laughed and said that a surgeon is more likely to judge that an area is probably fused in her OWN patients than in looking at xrays of other doctor's handiwork.

With the interesting prevalence of slow growing bacterial infections that may disrupt fusion as late as 2-10 years after surgery, one could be fused at 1-2 years and then the bacteria set up their biofilm on the fusion and they support osteoclastic activity instead of osteoblastic activity, and the solidness of the fusion is disrupted.
Susan

[mabeckoff]

Dr Bederman also comes by here as well.

I had surgery in 2011 and broke rods in 2013 and 2014.

[LindaRacine]

Re: fusion or not? Of course the question of, "Do you see fusion" is one that most of us ask at the first year visits. From my reading, I don't believe that one can "see" fusion, but probably lack of fusion.

I asked Dr. Hu if she saw evidence of fusion in my spine, and she laughed and said that a surgeon is more likely to judge that an area is probably fused in her OWN patients than in looking at xrays of other doctor's handiwork.

With the interesting prevalence of slow growing bacterial infections that may disrupt fusion as late as 2-10 years after surgery, one could be fused at 1-2 years and then the bacteria set up their biofilm on the fusion and they support osteoclastic activity instead of osteoblastic activity, and the solidness of the fusion is disrupted.
Susan

You actually can see bone growth on many radiographs, but as you indicated, you can't really tell if a fusion is solid by looking at one.

[susancook]

Linda: Yes, Dr. Hart showed me the xray and the evidence that there was bone growth and hopefully some degree of fusion. I thought that it was very interesting and somewhat encouraging.
Susan

[leahdragonfly]

Hi all,

I'm heading in for my SI joint injections this am, being done at the local hospital where I work. Since it is done in the Radiology department there is no sedation available, so I think I will take a percocet before going in (my husband is driving me). I recall others saying the SI joint injections are painful. A little nervous…this will be the moment of truth however if they help or not. If they don't help it is on with revision. I am definitely ready to find that out at least.

[Pooka1]

Good luck, Gayle. Time for you to catch a break. :-)

[mabeckoff]

SI Joint injections are painful but did give me relief.

Hope they help you

Melissa

[titaniumed]

I never had an SI joint injection. I did have a spinal tap or lumbar block once laying on a flouroscope to inject Iohexhol which lights things up for CT scans....A non-scoli ortho years ago was trying to see things which was an attempt at helping before any scoli surgeons were in my area. Years ago, this created some stress.....

Gayle, I hope this helped you out.....do try to get comfortable.....

Its always hard trying to find pain sources.......

Its almost like diagnosing a problem with a car. They have symptoms, make new noises, break parts, possibly break down, sometimes smell smoke, and we get upset.....Usually, the problem is found at some point and it is usually an easy thing. I don’t get upset anymore when the car breaks down because I lease. I actually laugh now since its not my car. Somebody needs to start leasing spines. (smiley face) $2000 down, $169/mo A nice new stainless or titanium spine would be a really neat thing, especially if it had a 100,000 mile warranty. Just think about how many hikes we could do?

I added the “smell smoke” as scoliosis forum humor......Can you imagine the look on your surgeons face if you stated that you smelled smoke? LOL

Try to keep smiling.....

Ed

[leahdragonfly]

ready for revision

Hi all,

Well, I e-mailed Dr Hart and told him I smelled smoke haha! Good one Ed. I feel like I am to that point though. And I sure am sick of people asking me "what I did" to break my rods again. People don't think about what they are saying.

I had the SI joint injections last Friday with no pain relief. I was pleasantly surprised that they really didn't hurt at all, just a few tiny needle jabs from the numbing. They basically told me afterwards that inflamed joints tend to hurt (more) when injected, so since my injections didn't hurt and didn't help I take that as evidence ruling out the SI joints as my pain source.

I am so tired of being limited in my activities that I tried to swim this weekend, first time in a month. The water felt nice but my body is telling me loud and clear that it can't tolerate more activity. Although the extreme muscle spasms have subsided, I have continuous low back pain on both sides now. I also have radiating left leg pain with numbness and tingling in the foot. My work friends have been protecting me at work and allowing me to take it as easy as possible, as my management is totally unsupportive of modified duty (for shame, it is a hospital). I can’t do a lot more than seated work, and as a nurse in a busy cardiac cath and Electrophysiology lab that is a big problem. If this came to management's attention I would be forced to stay home indefinitely. I have missed 10 work days due to pain since my original injury in late July, which is an absolutely unheard of amount of sick calls for me.

I had so hoped that with more rest and more time maybe this would resolve as a soft tissue injury, but 6 weeks later that is clearly now not the case. Dr Hart is wonderful and I think wanted me to come to a point of acceptance of the revision before scheduling it…he did not want to rush me into it. I guess he needed me to own it, since it won't be too fun of a ride. Remove and replace all lumbar hardware, with ALIF to fuse L5-S1 from the front, not sure what else. It will be about 6 hours of surgery. Dr Hart is going to get me scheduled ASAP.

I was so functional and active and pain-free after the last revision…I will work as hard as I can to get back to that. Now, does anyone have any patience to loan me?

Thanks for all the support from my friends here. Susan and Ed, you two are lifesavers for me! Susan, the card was amazing and so spot-on. You guys rock.

[susancook]

Susan, the card was amazing and so spot-on. You guys rock.

I found a card whose only message on the front was....SUCKS

Seemed appropriate.

Susan

[titaniumed]

Some quotes I picked out, and tonight’s interesting read......understanding our surgeons better...(Food for thought) (General post, I thought I would post it here)

“It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience. –Julius Caesar-

“Only during hard times do people come to understand how difficult it is to be master of their feelings and thoughts” –Anton Chekhov-

“Dark and difficult times lie ahead. Soon we must all face the choice between what is right and what is easy” –J.K.Rowling-

“Endurance is patience concentrated” –Thomas Carlyle-

“When push comes to shove we can afford to lose an arm or a leg, but I am operating on peoples thoughts and feelings...and if something goes wrong I can destroy a persons character....forever” –Henry Marsh-

http://www.newyorker.com/magazine/20...atomy-of-error


Ed