jeff_w
Senior Member
- Messages
- 558
Hi, @fredam7
There’s a lot information about this online. Here are some links.
CSF Colloquium: Various Forms of Craniocervical Stabilization
Chiari I Malformation, EDS, and Craniocervical Instability
Fortunately, there are not many re-dos. If re-dos were common, I would honestly and bluntly warn you about this.
That guy was me. I was injured by a completely inappropriate PT maneuver. If people stay away from incompetent PTs, then they won’t have to worry about this problem. She literally, without warning, gripped and twisted my fused skull! Ridiculous.
As for your concern about multiple surgeries, people who need CCI surgery often have hypermobility in many segments of their spines, due to EDS. For people with EDS, generalized spinal hypermobility is very common, especially in the cervical and lumbar areas. The best neurosurgeons are surgically-conservative and will not offer fusions for areas of mild hypermobility that aren’t symptomatic.
Sometimes, people’s spines continue to become progressively more hypermobile as they go through life, due to EDS and general aging. So, you might see people need multiple fusions in different areas, due to their genetic generalized spinal hypermobility.
Another factor is that a fusion can cause more stress on adjacent levels of the spine. My neurosurgeon says that when a person is fused skull to C2 (as I am, for CCI/AAI), there’s not much risk of lower levels failing, aka the “domino effect.” However, he said that once you’re fused below C2, you can become more vulnerable to the domino effect.
To help guard against developing further instability, a competent physical therapist is invaluable.
As for your concern about a tethered cord, a tethered cord is actually a comorbidity of CCI. It's something you're born with. In other words, the people with a tethered cord are the same people who get CCI. A tethered cord is usually not identified prior to CCI surgery, because when someone has CCI, their cord has more slack. Once the CCI is corrected, the congenitally-tethered cord becomes more apparent. This is why most people undergoing CCI surgery will also have tethered cord surgery, as both Jen and I did.
Ah, yes, it is important to ask questions, to be aware of potential pitfalls, and to cultivate a healthy skepticism.
There are no cages used in CCI fusion surgery. No sponges, either.
I see you’re referring to bone morphogenetic protein (BMP), and I haven't evidence that it "damages almost everyone." There is ongoing medical debate about BMP, and it's important to research any potential treatment, as best as we can. There are many scholarly articles freely available to anyone who wants to research this issue, in depth. Here's one article, specifically discussing issues related to BMP dosing:
Exploratory meta-analysis on dose-related efficacy and morbidity of bone morphogenetic protein in spinal arthrodesis surgery.
Sorry to hear it. I think many of us can relate to medical trauma.
My understanding, from researching this, is that BMP is officially contraindicated only for anterior cervical procedures. A fusion for CCI is done posteriorly. So, BMP isn’t contraindicated for CCI surgery. See this article, which addresses the use of BMP in the type of fusion that I had:
Use of Recombinant Human Bone Morphogenetic Protein-2 at the C1-C2 Lateral Articulation without Posterior Structural Bone Graft in Posterior Atlantoaxial Fusion in Adult Patients
If someone is uncomfortable with having BMP in their spine, then they should just tell their neurosurgeon to not use it. My neurosurgeon believes BMP gives patients a better fusion. But, he will not use it if a patient doesn't want it. Some patients have declined to use BMP. He respects that choice and will instead use regular bone graft.
Prior to surgery, I had full knowledge that BMP would be used. My insurance company approved it, so it was listed in plain text on my insurance authorization approval. I chose to consent to having BMP, because, in my opinion, the risk-benefit ratio favored using it.
I was once where you are right now, including the desperation and stopping breathing in my sleep. What kept me safe during that time was a medical-grade pulse ox, with an alarm set to wake me up when my vitals would plummet. I highly recommend getting one, if you can. It could save your life. Medical supply stores carry them. Mine cost about $250.
Since I no longer need that pulse-ox, I lent it to a fellow person with ME who has been struggling. I can check and see if she still needs it. If she doesn’t, I can ask her to mail it to you, if you’d like.
You could also try wearing a cervical collar while sleeping, if you’re comfortable trying that. It’s very low risk. I have spoken to quite a few others who were helped by doing that.
Personally, I wouldn't trade anything in the world for a fusion and restored health. Sometimes, I feel like the luckiest guy alive -- to have lived through hell and come out of it restored to health.
Once I realized I had brainstem compression, that it was ruining my life, and that it would never self-correct, I couldn’t get surgery fast enough. To me, not relieving the brainstem compression was much scarier than having a fusion. By far. Why, when given a choice, would I choose to waste away in bed with a crushed brainstem? I wasn’t going to keep my brainstem in that state. This was especially true after I researched skull to C2 fusion complication rates, which are low, and later spoke with so many people who had good outcomes from their fusions. They could once again drive, work, play, and live.
But we all have to do what we feel is best for ourselves. People have very different ideas about which risks are worth taking. If the thought of a fusion scares someone, then by all means don’t have one. If it’s specifically the bone morphogenetic protein (BMP) that scares someone, then just tell the neurosurgeon to not use it.
If you are terrified of a fusion, then the good news is that nobody will ever force one on you. You need to do what you feel is best. You are in complete control over your own choice here. And so is everyone else who is reading this thread.
There’s a lot information about this online. Here are some links.
CSF Colloquium: Various Forms of Craniocervical Stabilization
Chiari I Malformation, EDS, and Craniocervical Instability
Fortunately, there are not many re-dos. If re-dos were common, I would honestly and bluntly warn you about this.
That guy was me. I was injured by a completely inappropriate PT maneuver. If people stay away from incompetent PTs, then they won’t have to worry about this problem. She literally, without warning, gripped and twisted my fused skull! Ridiculous.
As for your concern about multiple surgeries, people who need CCI surgery often have hypermobility in many segments of their spines, due to EDS. For people with EDS, generalized spinal hypermobility is very common, especially in the cervical and lumbar areas. The best neurosurgeons are surgically-conservative and will not offer fusions for areas of mild hypermobility that aren’t symptomatic.
Sometimes, people’s spines continue to become progressively more hypermobile as they go through life, due to EDS and general aging. So, you might see people need multiple fusions in different areas, due to their genetic generalized spinal hypermobility.
Another factor is that a fusion can cause more stress on adjacent levels of the spine. My neurosurgeon says that when a person is fused skull to C2 (as I am, for CCI/AAI), there’s not much risk of lower levels failing, aka the “domino effect.” However, he said that once you’re fused below C2, you can become more vulnerable to the domino effect.
To help guard against developing further instability, a competent physical therapist is invaluable.
As for your concern about a tethered cord, a tethered cord is actually a comorbidity of CCI. It's something you're born with. In other words, the people with a tethered cord are the same people who get CCI. A tethered cord is usually not identified prior to CCI surgery, because when someone has CCI, their cord has more slack. Once the CCI is corrected, the congenitally-tethered cord becomes more apparent. This is why most people undergoing CCI surgery will also have tethered cord surgery, as both Jen and I did.
Ah, yes, it is important to ask questions, to be aware of potential pitfalls, and to cultivate a healthy skepticism.
There are no cages used in CCI fusion surgery. No sponges, either.
I see you’re referring to bone morphogenetic protein (BMP), and I haven't evidence that it "damages almost everyone." There is ongoing medical debate about BMP, and it's important to research any potential treatment, as best as we can. There are many scholarly articles freely available to anyone who wants to research this issue, in depth. Here's one article, specifically discussing issues related to BMP dosing:
Exploratory meta-analysis on dose-related efficacy and morbidity of bone morphogenetic protein in spinal arthrodesis surgery.
Sorry to hear it. I think many of us can relate to medical trauma.
My understanding, from researching this, is that BMP is officially contraindicated only for anterior cervical procedures. A fusion for CCI is done posteriorly. So, BMP isn’t contraindicated for CCI surgery. See this article, which addresses the use of BMP in the type of fusion that I had:
Use of Recombinant Human Bone Morphogenetic Protein-2 at the C1-C2 Lateral Articulation without Posterior Structural Bone Graft in Posterior Atlantoaxial Fusion in Adult Patients
If someone is uncomfortable with having BMP in their spine, then they should just tell their neurosurgeon to not use it. My neurosurgeon believes BMP gives patients a better fusion. But, he will not use it if a patient doesn't want it. Some patients have declined to use BMP. He respects that choice and will instead use regular bone graft.
Prior to surgery, I had full knowledge that BMP would be used. My insurance company approved it, so it was listed in plain text on my insurance authorization approval. I chose to consent to having BMP, because, in my opinion, the risk-benefit ratio favored using it.
I was once where you are right now, including the desperation and stopping breathing in my sleep. What kept me safe during that time was a medical-grade pulse ox, with an alarm set to wake me up when my vitals would plummet. I highly recommend getting one, if you can. It could save your life. Medical supply stores carry them. Mine cost about $250.
Since I no longer need that pulse-ox, I lent it to a fellow person with ME who has been struggling. I can check and see if she still needs it. If she doesn’t, I can ask her to mail it to you, if you’d like.
You could also try wearing a cervical collar while sleeping, if you’re comfortable trying that. It’s very low risk. I have spoken to quite a few others who were helped by doing that.
Personally, I wouldn't trade anything in the world for a fusion and restored health. Sometimes, I feel like the luckiest guy alive -- to have lived through hell and come out of it restored to health.
Once I realized I had brainstem compression, that it was ruining my life, and that it would never self-correct, I couldn’t get surgery fast enough. To me, not relieving the brainstem compression was much scarier than having a fusion. By far. Why, when given a choice, would I choose to waste away in bed with a crushed brainstem? I wasn’t going to keep my brainstem in that state. This was especially true after I researched skull to C2 fusion complication rates, which are low, and later spoke with so many people who had good outcomes from their fusions. They could once again drive, work, play, and live.
But we all have to do what we feel is best for ourselves. People have very different ideas about which risks are worth taking. If the thought of a fusion scares someone, then by all means don’t have one. If it’s specifically the bone morphogenetic protein (BMP) that scares someone, then just tell the neurosurgeon to not use it.
If you are terrified of a fusion, then the good news is that nobody will ever force one on you. You need to do what you feel is best. You are in complete control over your own choice here. And so is everyone else who is reading this thread.
