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

[Yuno]

b. stretching of the brainstem and spinal cord beyond its natural limits

Die Now it should become obvious why traction helps with those cases. In case a: when the head is pulled upward, the dens is pulled away from the foramen magnum thus eliminating the compresion. In case b: the traction causes the curvature of the spinal cord to be normalized and thus removes the pathological stretching.[/QUOTE]

@borko2100
Regarding Case B:

I actually thought and obviously falsely so, that if you
pull the skull just upward, the clivus would just be pulled along with it in the same position without changing its angle to the dens just creating more distance within clivus and dens.

But if I get it right you are saying that by lifting the head the clivus would actually behave like it does in extension, it would change its angle to bridge The growing distance to the dens. Right ?

 

[jeff_w]

Hi @bread.

The fact that you improved with vertical traction and not by wearing a collar just stands testament that the removal of „vertical pressure“ is what changed your outcome the most.

No, I improved by wearing a collar, even without vertical traction. A Philadelphia cervical collar improved my symptoms and tided me over for almost 2 months, until I collapsed. I've written about my experience with the collar on my website.

Of course vertical traction also improves horizontal instability but so would lying down or wearing a collar, so why is that not changing the symptoms to the degree like traction?

Lying down and wearing my collar did improve my symptoms. It was the only position I could tolerate for half a year. I was stuck exactly like that in a hospital bed for 5 months, lying down in my cervical collar.

You understand the point?

I understand it. And I disagree with it.

Let me ask you a very simple question in that regard:

Why is Dr. B not taking patients that do not respond to vertical traction even if they have instabilitys?

You asked me this exact question 12 days ago, in this other thread, here.

I'll answer you one last time, in a bit more detail: Dr. B has patients try traction because traction mimics a fusion. Traction relieves all three kinds of instability: horizontal, vertical, and rotational. And so, traction is an efficient method of choosing a good surgical candidate.

He has so many people sending him their imaging now. He's using a traction trial to help weed out people who might not be good fusion candidates. But the traction trial has nothing to do with horizontal vs vertical instability. If a patient has severe and obvious horizontal instability on an MRI, as I did, Dr. B will accept that patient even without a trial of traction.

You don't have to take my word for any of this. You could always send Dr. B an email and ask him directly.

 

[bread.]

Hi @bread.



No, I improved by wearing a collar, even without vertical traction. A Philadelphia cervical collar improved my symptoms and tided me over for almost 2 months, until I collapsed. I've written about my experience with the collar on my website.



Lying down and wearing my collar did improve my symptoms. It was the only position I could tolerate for half a year. I was stuck like that in a hospital bed for 5 months, lying down in my cervical collar.



I understand it. I just disagree with it.



You asked me this exact question 12 days ago, in this other thread here.

I'll answer you again, in a bit more detail this time: Dr. B has patients try traction because traction mimics a fusion. Traction relieves all three kinds of instability: horizontal, vertical, and rotational. And so, traction is an efficient method of choosing a good surgical candidate.

He has so many people sending him their imaging now. He's using a traction trial to help weed out people who might not be good fusion candidates. But the traction trial has nothing to do with horizontal vs vertical instability. If a patient has severe and obvious horizontal instability on an MRI, as I did, Dr. B will accept that patient even without a trial of traction.

You don't have to take my word for any of this, of course. You could always send Dr. B an email and ask him directly.

Thank you.

This is my last try, this is getting kafkaesque, probably for both of us.



You answered the question two times, and both times you did not answer the question:

WHY is Dr.B weeding people out with traction? What is the rationale behind it? What is the difference in people who respond to traction and people who do not respond to traction while BOTH PARTIES have measureable CCI diagnosis?

I am sure Dr. B does surgery on severe horizontal instabilitys only but that DOES SAY NOTHING about the surgery outcome, the decision also bears the rationale of preventing further damage probably!

What is the difference between you and many others? To say it it is „other structural issues“ like in Matties case is not helping.

 

[jeff_w]

Hi @bread.

What is the difference between you and many others? To say it it is „other structural issues“ like in Matties case is not helping.

All 7 of us with ME who have had fusions improved, just to different degrees. There are multiple potential explanations for the different outcomes.

As for why I wrote that Mattie has a "remaining structural issue," it is because Dr. Gilete and 5 other professionals have said this is the case.

Mattie has explained this entire situation, including his decision to not have further surgery, in a lot of helpful detail.

Mattie wrote here that, due to his remaining symptoms, Dr. Gilete ordered an MRV (Venogram). It came back positive. Dr. Gilete said it's showing serious compression of the jugular vein. This led to a diagnosis of Bilateral jugular vein stenosis with suspected intracranial hypertension.

Mattie wrote that Dr. Gilete offered another surgery to resolve this remaining structural issue. He would remove part of the C1 vertebra to take the pressure off of his jugular vein.

Then, Mattie got 6 additional opinions on this.

Six out of the 7 (including Gilete) agreed that Mattie has jugular stenosis. The only 1 who didn't was a radiologist, who didn't mention seeing stenosis in the report. Of the 6 who agreed there was jugular stenosis, 3 or 4 of them, including Gilete, feel it is a remaining problem. The remaining 2 or 3 feel it is not.

Mattie did a lot of his own research on this issue. Also, Jen Brea and Mattie had a back and forth discussion about this.

 

[jeff_w]

Thank you.

This is my last try, this is getting kafkaesque, probably for both of us.

It really is. I appreciate your sense of humor about this.

We will probably have an exact answer to our debate 5-10 years from now. If it turns out that you are correct about horizontal vs vertical instability outcomes, I will offer to buy you a drink.

 

[jeff_w]

What is the difference between you and many others? To say it it is „other structural issues“ like in Matties case is not helping.

I should add that having multiple underlying structural issues is very common. I'd even say it's the norm for these conditions. I'm basing my opinion on what I've learned over the past 2 years in the CCI/AAI neurosurgery community.

As just one example: I didn't have just CCI/AAI alone. I also had a tethered spinal cord. This required an additional surgery, 6 months after my fusion. After my tethered cord release, all remaining neurological symptoms resolved.

Jen Brea, too, didn't have just CCI/AAI alone. Like me, she also had a tethered spinal cord that required another surgery, in addition to her fusion.

 

[HansG]

[...]
Regarding Case B:

I actually thought and obviously falsely so, that if you
pull the skull just upward, the clivus would just be pulled along with it in the same position without changing its angle to the dens just creating more distance within clivus and dens.

But if I get it right you are saying that by lifting the head the clivus would actually behave like it does in extension, it would change its angle to bridge The growing distance to the dens. Right ?

@jeff_w did answered a similar question (re: retroflexed odontoid) in Jens FB group: (@jeff_w I'm hoping and assuming you dont mind, posting this. I found it very helpfull.)

"Hi Everyone,

I've had several people ask over the past few weeks: "How can traction possibly correct a retroflexed odontoid?"

So, here's the answer: When an odontoid becomes retroflexed due to CCI, there's no underlying bone abnormality. Rather, the odontoid becomes retroflexed due to lax ligaments. These lax ligaments are failing to keep the skull in the correct position relative to the cervical spine. So, the appearance of retroflexion is *only* because of the skull's abnormal position relative to the cervical spine, again, due to lax ligaments failing to hold it in place. The odontoid will no longer appear retroflexed under traction because traction (temporarily) restores the normal position of the skull. This, in turn, relieves brainstem compression (and symptoms)."

Trying to think about by myself, I was adding some thoughts:

"Thank you [@Jeff_w] That makes sense to me. I imagine it like follows. Head is sinking down, due to lax ligaments.

So, somewhat has to happen with the "material" in the orange part. So either, the odontoid (as a solid structural part of this "material") stays straight and pushs into the upper brainstem (1.) or it dodges to the right and pushs in the downer brainstem (2.) or something between. Anyway, at least CXA would be pathological and lifting the head should definitely resolve 1. and probably 2., depending on ability of odontoid moving back by itself respectively forced by muscles, ligaments ect. I'm aware of everything is beeing much to complex to reduce it like this, but it helps me as a non professional thinking about."

So, yes traction should fix a pathological Grabb Oakes, CXA, BAI ect. I think Hendersion mentioned this somewhere, too. I will look for the regarding study, but have not the time yet.

 

[pattismith]

I should add that having multiple underlying structural issues is very common. I'd even say it's the norm for these conditions. I'm basing my opinion on what I've learned over the past 2 years in the CCI/AAI neurosurgery community.

As just one example: I didn't have just CCI/AAI alone. I also had a tethered spinal cord. This required an additional surgery, 6 months after my fusion. After my tethered cord release, all remaining neurological symptoms resolved.

Jen Brea, too, didn't have just CCI/AAI alone. Like me, she also had a tethered spinal cord that required another surgery, in addition to her fusion.

@jeff_w
I am confused about this association between CCI and tethered cord.
Did you ever suffer with lumbar pain/sacral pain or leg pain?

 

[Scotty81]

Hi @Gingergrrl. I'm reading through this thread (and only up to page 32), but I saw something you said.

Once again, dysautonomia (like ME/CFS) is sort of in no-man's land and does not belong to one specialty (although the rare Cardio or Neuro does understand it).

Anyway, in case you haven't seen it, there's an organization called Dysautonomia International which has a page of their website that lists POTS doctors. And, if there's not one near you, you can contact their patient advocate lines to see if they can find the necessary medical resources for you.

I know this isn't related to CCI/AAI, but I wanted to note it for those looking for POTS resources.

 

[Hip]

WHY is Dr.B weeding people out with traction? What is the rationale behind it? What is the difference in people who respond to traction and people who do not respond to traction while BOTH PARTIES have measureable CCI diagnosis?

Dr Bolognese explains why he uses the invasive cervical traction to screen people in this video at timecode 59:00. As you can see from the video, there are 4 reasons he uses neck traction to screen his patients.

 

[Joly]

@jeff_w
I am confused about this association between CCI and tethered cord.
Did you ever suffer with lumbar pain/sacral pain or leg pain?

From what I've read, tethered cord and occult tethered cord often present as co-morbid in EDS patients and others with CCI/AAI. I'm not sure if there have been any studies done as to why.

It's my understanding that when CCI is addressed with surgery this can sometimes cause a tethered cord to become more symptomatic as postural changes can occur which alters the positioning and tautness of the spinal cord.

There may be details I've missed, but this seems to be the case for some patients, where either their tethered cord was previously non-symptomatic or the symptoms were disguised or secondary to CCI or another condition.

 

[Sidny]

Are there any there any therapies (or an possible novel ideas) besides invasive surgery that could improve conditions like tethered cord, CCI and a retroflexed odontoid?

 

[Hip]

Are there any there any therapies (or an possible novel ideas) besides invasive surgery that could improve conditions like tethered cord, CCI and a retroflexed odontoid?

Yes, some ME/CFS patients with CCI are already trying stem cell injections into their ligaments provided at the Regenexx clinic. This clinic claims success with treating CCI. Cost is $6000, which is a lot of money, but much cheaper than surgery. We will have to wait to see the outcome of these ME/CFS patients.

 

[jeff_w]

Hi @pattismith ,

@jeff_w
I am confused about this association between CCI and tethered cord.

They occur together frequently, probably more often than not. As @Joly explained:

From what I've read, tethered cord and occult tethered cord often present as co-morbid in EDS patients and others with CCI/AAI. I'm not sure if there have been any studies done as to why.

​

It's my understanding that when CCI is addressed with surgery this can sometimes cause a tethered cord to become more symptomatic as postural changes can occur which alters the positioning and tautness of the spinal cord.​

​

There may be details I've missed, but this seems to be the case for some patients, where either their tethered cord was previously non-symptomatic or the symptoms were disguised or secondary to CCI or another condition.​

​

​

Did you ever suffer with lumbar pain/sacral pain or leg pain?

Yes. It seemed so minor compared to everything else (PEM, POTS, etc.). After the fusion, my leg pain increased due to increased tautness of my spinal cord. Even a fractional increase in stretching can have a great impact on neurological symptoms.

If I hadn't already had an underlying tethered cord, the fusion wouldn't have brought on leg symptoms.

My leg symptoms resolved after the tethered cord release surgery. It took 3 weeks for me to notice a significant post-op improvement, and this was followed by several more months of steady improvement.

 

[of unknown etiology]

jeff_w,

Jeff,
Why don't you answer my e-mails to MEchanicalbasis.org? We have so much to share because of our medical conditions. Join me in making this topic a world wide discussion on craniovertebral junction instability. Let me send you a copy of my paper (90 pages). I think that you will find it very interesting and informative. I have sent your MEchanicalbasis.org address to over seventy-five spine entities worldwide. Work with me, join me.

of unknown etiology

 

[Gingergrrl]

Hi @Gingergrrl. I'm reading through this thread (and only up to page 32), but I saw something you said.

Anyway, in case you haven't seen it, there's an organization called Dysautonomia International which has a page of their website that lists POTS doctors. And, if there's not one near you, you can contact their patient advocate lines to see if they can find the necessary medical resources for you. I know this isn't related to CCI/AAI, but I wanted to note it for those looking for POTS resources.

Thanks for thinking of me @Scotty81 and I'm actually very familiar with Dysautonomia International and almost went to their conference this year but wasn't able to afford it. I've seen some of the doctors on their list (in prior years) but it ended up being my ME/CFS specialist (who is an internist who works with complex diseases) that realized that I had "Autoimmune POTS" and figured out the treatments that put my overall illness into remission. POTS was the most intractable part that took the longest to go into remission but it finally did. I also don't want to take this thread off-track from CCI/AAI but wanted to reply to your tagging me.

 

[Wolfcub]

Moderator note: Posts #1726, 1727, 1728,1729, 1730, 1731, 1732, 1733, 1736, 1737, 1738, 1739, 1740, 1741, 1742, 1743,1744,1745, 1746, 1747, 1748, 1749, 1750, 1751, 1752, 1753, 1754, 1755, 1756, 1757 have been moved from Members Only - CCI / AAI fusion surgery scheduled

 

[mattie]

Six out of the 7 (including Gilete) agreed that Mattie has jugular stenosis. The only 1 who didn't was a radiologist, who didn't mention seeing stenosis in the report. Of the 6 who agreed there was jugular stenosis, 3 or 4 of them, including Gilete, feel it is a remaining problem. The remaining 2 or 3 feel it is not.

That is not exactly what I wrote.

IJV stenosis has been observed by 4 out of the 7, of these 4, 2 are not MD's. And in hindsight one of them is probably a quack. The other one is a patient of Dr. Higgins.
Local neurologist and radiologist saw some narrowing in the left transverse sinus (not the IJV) but said this would not be causing issues. I also don't have symptoms of IIH.
1 Radiologist reviewed my MRV twice and stressed that he did not see anything abnormal.

So IJV stenosis was only thought to be potentially problematic by Dr. Gilete and Dr. Higgins.
Again: IJV stenosis / narrowing is very common in healthy people.

Stenting or ballooning to treat IJV stenosis is experimental, often problematic, outright dangerous and not FDA approved.
Dr. Gilete offered to remove some lateral mass from C1 to resolve IJV stenosis.
For now I will not pursue this. I have written a lot more about it in this thread.

 

[jeff_w]

Hi @mattie

That is not exactly what I wrote.

IJV stenosis has been observed by 4 out of the 7, of these 4, 2 are not MD's. And in hindsight one of them is probably a quack. The other one is a patient of Dr. Higgins.

Local neurologist and radiologist saw some narrowing in the left transverse sinus (not the IJV) but said this would not be causing issues. I also don't have symptoms of IIH.

So IJV stenosis was only thought to be potentially problematic by Dr. Gilete and Dr. Higgins.

I see, thanks for clarifying.

Dr. Gilete offered to remove some lateral mass from C1 to resolve IJV stenosis. For now I will not pursue this. I have written a lot more about it in this thread.

 

[bombsh3ll]

@jeff_w I have been offered a trial of a halo brace in order to help determine if surgery will benefit me. Do you know, or was it discussed with you at the time, if having your head pulled up invasively could potentially cause or worsen vertical instability if this turns out not to have been your issue to begin with (ie if the halo didn't improve symptoms)?

And as someone who has been through it, would you recommend trial of halo or just proceed to surgery?

Also did the halo help your surgeon determine the best fusion position/degree of traction to fuse you in, or enable additional scans/ measurements to be taken under traction?

Many thanks,

B xxx