Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

[Daffodil]

do you think that the digestive problems were caused by the neuro problems? ie, suppressed autonomic function due to inhibited neuro function?

brain stem compression can delay gastric emptying which, i assume, can cause a cascade of issues with bacterial overgrowth, leaky gut, etc

 

[Daffodil]

thats interesting..one of my radiology reports mentions the word scoliosis in it. probably something mild. but since dr. gilete says i likely need total cervical fusion, i guess i am one of the worst here. which is weird in itself because i have no numbness pain or headaches!

 

[frozenborderline]

1) Patients with CCI/AAI suffer from symptoms that are clearly distinct from the symptoms of ME/CFS.

I don’t see why two people whose ICC-ME was alleviated by treatment for cci, should need to put a disclaimer saying something that was obviously not true in their case. I’ll leave addressing the rest of this to others, as I’m low on spoons at the moment

 

[Daffodil]

I don’t see why two people whose ICC-ME was alleviated by treatment for cci, should need to put a disclaimer saying something that was obviously not true in their case. I’ll leave addressing the rest of this to others, as I’m low on spoons at the moment

i guess the implication is that they did not, in fact, have true ME..but CCI only?

 

[frozenborderline]

Bolognese wants people to first do 4 to 5 sessions of PT manual traction therapy, sometimes using a weight. What if it makes us worse? Does he want to see that it helps, or hinders? If it does nothing, does he then rule you out as a surgery candidate?

This is standard, because he’s fairly conservative. If someone has imaging that shows cci but they do not benefit from manual traction with a pt , he may either think that they will not benefit from surgery or need to try invasive cervical traction.

Manual traction with a pt is not with a “weight” as far as I know. With a skilled pt it can be done very gently, and they can work up to greater amounts of force. Over time it can worsen laxity and also have a rebound effect after the initial benefit , but it’s also not as extreme as what you’re saying

 

[jeff_w]

Hello, @Michiel Tack -

You've compiled and synthesized an impressive amount of information here. Well done!

I'm going to add my own thoughts to the information you've presented, piece by piece.

This type of surgery, called occipitocervical fusion, is no joke. It reduces the range of motion of patients’ neck by approximately 30%.

It is true that this surgery limits a patient's range of motion by roughly 30%. That being said, I can comfortably turn my head side-to-side, well enough to drive, and I have nearly perfect up and down range of motion while nodding my head. Most days, I forget that I'm fused.

Compared to years of POTS, PEM, and being bedridden, this modest reduction in range of motion is an extremely acceptable tradeoff.

Mattie reported that the surgeons put him on anesthesia for 14 hours and that the first days after the surgery were terrible, being in pain and unable to move or sleep. Recovery is slow and estimated to last several months.

I was under anesthesia for 7 hours. I did not experience the post-op pain that you're claiming Mattie did. Experiences will differ somewhat.

Overall: Recovery from a fusion surgery may be slow, and yes, it may last several months. But compare a several months recovery time versus spending a lifetime with ME, with very low odds of recovery. I'd much prefer several months of recovery vs decades with ME.

The complications of occipitocervical fusion can be serious and should be taken into consideration. According to Choi et al. common complications include screw failure, wound infection, dural tear and cerebrospinal fluid leakage.

Indeed, all of those complications can and do happen. This is why I am very clear that I can only recommend 4 neurosurgeons in the world at this time. The 4 that I recommend are true specialists and have the very lowest of complication rates. I cannot, in good conscience, recommend that people have this surgery done by other neurosurgeons. I look forward to the day when this changes.

Mild to moderate pain at the rib harvest site was common at 2 years, although substantially abating at 5 years.

A rib harvest is an outdated method of providing bone grafting, for this very reason of protracted pain. Currently, Dr. Henderson and Dr. Bolognese use a superior bone grafting technique that does not require harvesting from a patient. In short, with the right choice of neurosurgeon, this concern you listed here can be eliminated.

The study reported that “one to four years after the craniocervical fusion, some subjects developed pain over the suboccipital instrumentation due to tissue thinning, and requested hardware removal (8/20 subjects).”

The most advanced fusion technique to date does not use a suboccipital plate instrumentation. And so, patients with the advanced condylar screw fusions do not have this problem. In short, with the right choice of neurosurgeon, this concern you listed here can be eliminated.

Jeff experienced a severe infection following his occipitocervical fusion. On the Phoenix Rising forum he reported:

“Day 21 post-surgery, the swelling rapidly increased, and my incision site became bright red, inflamed, and the redness was spreading. I spiked a fever of 101.6 and went to the E.R. They admitted me for a week, got me on IV antiobiotics with a PICC line.”[18]​

Jeff needed another surgery to reopen and clean the incision site.

You are correct. But you should note that my experience of infection was not typical. It was due to my uniquely extenuating circumstance: I went into my fusion surgery after spending 4 months in a halo brace -- and 9 full months unable to shower or bathe.

My neurosurgeon warned me that I was at a greatly increased risk of developing a post-surgical infection due to having been in a halo brace as well as having been unable to fully bathe for 9 months pre-operatively.

I'm only one of two non-traumatic CCI/AAI patients that I'm aware of, out of thousands, to have been in a halo brace prior to a fusion. A halo brace prevents a patient from being able to shower at all. I had been subsisting on sponge baths for the entire 9 months prior to my surgery. Five of those months were spent immobile in a hospital bed, and the remaining 4 months prior to my fusion surgery were spent in the halo. Nine months without a proper bath or shower did not provide the best hygiene, to say the least.

Again, infections are not the norm and can be prevented with: 1. Good hygiene (which wasn't possible in my unique circumstance) and 2. The administration of a peri-operative antibiotic. In short, this concern you listed here can be nearly eliminated.

Later he would need another revision surgery to replace 3 screws after a physical therapist twisted his neck too far.

Correct, though once again, you need to note the context. 1. My physical therapist did an entirely inappropriate maneuver for a fusion patient. Most PTs would not do this. 2. My fusion screws were rendered more vulnerable to coming loose from her maneuver due to my initial infection.

Again, most patients will not get an infection (no pre-op halo), and their fusions would therefore be much more likely to hold sturdy, even if subjected to an inappropriate PT maneuver.

In short, this concern you listed here can be nearly eliminated.

It costs a lot of money

This is indeed true for many people. However, my insurance covered it.

The majority of insurance companies in the United States can cover it. It is an absolute injustice that healthcare is out of reach for most people.

Given the information provided above, I would advise Jeff, Jennifer and Matt to add a noticeable disclaimer to the interesting and courageous blog posts they write about their past surgeries and current recovery process. The disclaimer should inform readers that:

(1) Patients with CCI/AAI suffer from symptoms that are clearly distinct from the symptoms of ME/CFS.​

I cannot, in good conscience, post this disclaimer -- because I believe it to be inaccurate.

​

​

(2) There is no scientific evidence to suggest that CCI/AAI surgery relieves ME/CFS symptoms.​

​

Once again, I cannot in good conscience post this disclaimer -- because I believe it to be inaccurate.

​

​

(3) CCI/AAI surgery costs tens of thousands of euro’s and has severe complications including screw failure, wound infection, dural tear and cerebrospinal fluid leakage.​

​

Costing "tens of thousands of euros" isn't universally true. It's only correct in some jurisdictions.

In addition to that one point, the rest of your statement is misleading. The complications you're detailing are not common when one enters the pre-op state with good hygeine, and when one chooses a highly-experienced specialist neurosurgeon.

So, once again, I cannot in good conscience post this disclaimer -- because I believe it to be misleading.

Michiel, you and I have read and analyzed many of the same studies and information. My sense is that you were left feeling skeptical and possibly scared. In contrast, I came away feeling intrigued and empowered.

After synthesizing information, I was able to proceed with a fusion surgery, having done a logical, systematic risk-benefit analysis. In fact, I couldn't get the surgery fast enough! I wanted my life back. And now, I'm getting my life back, including pumping iron twice a week. Having been bedridden for over 3 years, I'm won't be bench-pressing 220 pounds anytime soon, but I'm on my way back to that!

Human beings are not a monolith, and it's great that we can present different perspectives on this board. It's up to each person to do their own risk-benefit analysis.

Overall, @Michiel Tack, I appreciate the time you've taken to advance this discussion forward.

 

[ebethc]

brain stem compression can delay gastric emptying which, i assume, can cause a cascade of issues with bacterial overgrowth, leaky gut, etc

food def seems to just "sit" in my stomach... I thought it was due to low stomach acid

 

[frozenborderline]

i guess the implication is that they did not, in fact, have true ME..but CCI only?

Yes, and I don’t agree with that implication.

 

[Daffodil]

food def seems to just "sit" in my stomach... I thought it was due to low stomach acid

yes...when i go over the all the years of being sick, i can remember strange phases...like months of nausea...months of diarrhea....months of acid reflux....a progression

 

[Daffodil]

@jeff_w but when you say there is a very low rate of complications, you are talking about just 1 or 2 level fusion, right?

 

[ebethc]

yes...when i go over the all the years of being sick, i can remember strange phases...like months of nausea...months of diarrhea....months of acid reflux....a progression

how do you improve gastric emptying? isn't it called gastroparesis (sp?)?

 

[Daffodil]

how do you improve gastric emptying? isn't it called gastroparesis (sp?)?

i dont know...maybe one of those pro-motility medicines? never looked into it. i wonder if anyone with CFS/ME has been prescribed those...i cant think of the names of the meds just now. my mom was on them cuz of her opiates making the food not pass along well enough or something..she always felt full

come to think of it, i have been twice as hungry since i became ill. i eat 5 meals a day - no joke. i feel somewhat unwell if i am not full. so i dont know how that fits into gastroperesis

 

[MEPatient345]

This is standard, because he’s fairly conservative. If someone has imaging that shows cci but they do not benefit from manual traction with a pt , he may either think that they will not benefit from surgery or need to try invasive cervical traction.

Manual traction with a pt is not with a “weight” as far as I know. With a skilled pt it can be done very gently, and they can work up to greater amounts of force. Over time it can worsen laxity and also have a rebound effect after the initial benefit , but it’s also not as extreme as what you’re saying

Thanks for the info @debored13, also, really good rebuttals on the other forum.
Can you elaborate further.. I have seen some patients say they get a prescription for traction therapy, and some mention also being told to use a weighted device. I’m having a hard time bc of brain fog keeping track of who said what, and the variables involved. In your own experience (remote consults w Dr B?) could you say what the prescription was, and how you have done physically? Does each patient get a tailored prescription based on their imaging, or is it the same prescription to everyone? (If it is a generic “try traction therapy” I could get going with that immediately instead of waiting for a consult)

 

[Michiel Tack]

@Michiel Tack do you know how long they followed hernderon's patients in the study? it is reasonable to think that someone who had CFS/ME for decades, would not recover quickly. perhaps improvements in IBS, fatigue, etc came much later, maybe very very gradually.

An average of 5 years. I would argue if you don't see improvements in fatigue, IBS etc. 5 years after surgery, then it's unlikely that that surgery will cause improvements after those 5 years.

 

[Michiel Tack]

I don’t see why two people whose ICC-ME was alleviated by treatment for cci, should need to put a disclaimer saying something that was obviously not true in their case.

This is what the scientific literature says. I haven't found any credible publication that shows or even suggests that CCI can cause ME/CFS symptoms, let alone that it would relieve those symptoms.

A lot of ME/CFS patients are reading Jeff's and Jennifer's blog post and wonder whether they should test for ICC and perhaps have the fusion surgery. Some will be terrible ill and desperate to try anything to relieve their suffering. It is important that they are correctly informed about what the current scientific literature tells us about CCI and occipitocervical fusion.

 

[Remi]

i dont know...maybe one of those pro-motility medicines? never looked into it. i wonder if anyone with CFS/ME has been prescribed those...i cant think of the names of the meds just now. my mom was on them cuz of her opiates making the food not pass along well enough or something..she always felt full

come to think of it, i have been twice as hungry since i became ill. i eat 5 meals a day - no joke. i feel somewhat unwell if i am not full. so i dont know how that fits into gastroperesis

With gastroparesis you feel full all the time because the food stays too long in your stomach. Is it Domperidon your mother uses?

 

[brando]

I have a new drinking game.. take a shot every time @jeff_w says “pumping iron twice a week” 😂
I dunno why but it makes me laugh every time!

 

[brando]

So what is the vision of this moving forward? If this is indeed the solution to (at least a subset) of people with ME.. there has to be some kind of testing on people with “official / Ramsey etc.” ME before and after fusion to make up a study and get a good feel for results? And possible alternatives once we understand the underlying mechanics from an MECFS perspective.
I know this is on Ron Davies and more importantly Younger’s radar, is there any word from those close to the them (@JenB) on what the next steps are, and how we can help progress things along? It seems to me that considering the unique results for these patients [even if only a subset] and the lack of viable treatments that studies around this area should be prioritised in some way?

Edit: enthusiasm + brainfog = typos

 

[frozenborderline]

Can you elaborate further.. I have seen some patients say they get a prescription for traction therapy, and some mention also being told to use a weighted device. I’m having a hard time bc of brain fog keeping track of who said what, and the variables involved. In your own experience (remote consults w Dr B?) could you say what the prescription was, and how you have done physically? Does each patient get a tailored prescription based on their imaging, or is it the same prescription to everyone? (If it is a generic “try traction therapy” I could get going with that immediately instead of waiting for a consult)

I was told to do six sessions of traction, manual or with a device, and to stop if there was severe pain. I preferred manual. I found a pt who does traction and did six sessions of traction with him. He recommended a device I could use laying down and pump up,but I still didn't like that as much as traction with a PT. He also trained my sister how to do traction very well.

If I do too much traction I get a rebound effect. This is pretty standard. My ligaments do seem to have become more lax over time partially maybe to overdoing traction, but in my opinion moreso due to living in a moldy house, which has been discussed as a trigger for collagen degeneration.

 

[frozenborderline]

(If it is a generic “try traction therapy” I could get going with that immediately instead of waiting for a consult)

if you can get a PT to just do traction therapy, sure, although some may want to know why and to hear it from a neurosurgeon. In my case I showed the email from bolognese after I'd had my scans done, to my PT