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

[rel8ted]

Any one have more information on this? I will be intubated soon and have hEDS. @jeff_w

Also wondering bc I have worsened since a sinus surgery.

 

[rel8ted]

It was apparently devised by someone who tells a story of alien enslavement of the human race by tweaking out atlas vertebra just-so, so that 99.9% of us have a "misaligned" atlas that limits our natural human strengths. Getting this magical one-time adjustment will bring back your true power, for life

I was never interested in the treatment before, but now.....

 

[Daffodil]

I was never interested in the treatment before, but now.....

hahah

 

[Sushi]

Being an anesthesiologist, allow me to answer that... First of all, yes it is possible to intubate someone who has a fixed neck. These days many intubations are done with video laryngoscopy anyway, which does not require extension of the neck like direct laryngoscopy with a traditional laryngoscope. For people with severely distorted necks, sometimes fiberoptic intubation is needed. Furthermore, a lot of general anesthetics nowadays are done with a laryngeal mask airway (LMA) which does not require visualization of the laryngeal opening or extension of the neck.

In addition, depending on the surgeon and the procedure used for craniocervical fusion, some degree of neck motion is likely to be preserved. And even those who get the much more common procedure of cervical fusion (ACDF: anterior cervical diskectomy and fusion) afterwards usually have reduced neck mobility. For subsequent anesthetics, video laryngoscopy makes this typically not a problem.

The neck extension we anesthesiologists do is gentle and would not loosen screws like Jeff's overly aggressive PT's "adjustment". I've had that sort of thing done by a chiropractor—once—after that one time, no one was ever going to do that to me again!

If you have CCI/AAI, it's more of a concern if you are going to have an operation with intubation (or intubation for any reason) before you are fused, as neck extension can cause problems. It's very important that your anesthesiologist know about the issue ahead of time, to avoid neck extension.

Thanks, that is very helpful and I’ll share my neck concerns in the anesthesiology pre-op appointment.

 

[bombsh3ll]

Being an anesthesiologist, allow me to answer that..

Wow thanks, it is great to hear a reassuring answer from a professional! That was really bothering me if I ever needed further surgery and had a rigid neck. Especially if I got fused lower than C2.

Would it be advisable as well as telling the anaesthetic team, to wear a rigid collar when going for surgery, just to make sure nothing happened if they don't actually need to extend your neck?

Regarding the halo, I agree it is worth it if it helps determine who does and doesn't need surgery, but from what Jeff said he was in his for a good while before all the symptoms resolved, as in it wasn't immediate, so I was thinking 48 hours may simply not be enough, particularly in somebody who is significantly deconditioned.

Also, what do you think about the possible dangers of traction on a potentially lax cervicovertebral junction for someone who either had to then remove the halo and wait for surgery, or who wasn't deemed suitable for surgery? My abdominal skin never went back to normal after pregnancy, so what about the craniocervical ligaments having been stretched upwards then released? I have a (tenuous) diagnosis of hEDS, but this could apply to the wider population generally.

B xxx

 

[bombsh3ll]

Any one have more information on this? I will be intubated soon and have hEDS.

Sushi, I was going to say I am also diagnosed with hEDS and have had several surgeries under GA with no issues at all (however these were all long before I became ill or had the EDS diagnosis).

I agree def tell the team operating on you about your concerns.

B xxx

 

[valentinelynx]

Would it be advisable as well as telling the anaesthetic team, to wear a rigid collar when going for surgery, just to make sure nothing happened if they don't actually need to extend your neck?

If you find wearing a rigid cervical collar helpful, then you could bring or wear it when you go in for surgery, but I would expect that you will not be allowed to wear it during surgery for hygiene reasons, unless it is necessary for your health (then I suppose they would clean it). Warning the surgical team about your neck should be sufficient. We get people with things like bad necks, frozen shoulders, etc. all the time. Safe positioning during surgery is an essential part of anesthesia practice, because patients cannot protect themselves while anesthetized and serious injury can occur from as simple a thing as pressure in the wrong spot from the arm lying incorrectly.

from what Jeff said he was in his for a good while before all the symptoms resolved, as in it wasn't immediate, so I was thinking 48 hours may simply not be enough

I don't know why @jeff_w was in the collar for such an extended period of time. I suspect it was because his surgery was delayed for some reason, not because they wanted to have a several week long diagnostic trial. Let's ask @jeff_w why he was in traction for so long, and how long it took before he noticed a significant change in his health. Unless, of course, he already said all this and I didn't see it.

Also, what do you think about the possible dangers of traction on a potentially lax cervicovertebral junction for someone who either had to then remove the halo and wait for surgery, or who wasn't deemed suitable for surgery?

I cannot render an informed opinion on this, not being trained in the field of neurosurgery. @StarChild56 's experience and another person's, I think it was @JenB, was that removal of the invasive traction caused a devastating return of symptoms, but it wasn't clear that it was an exacerbation. If the traction doesn't improve your symptoms, however, then removing it probably wouldn't worsen them. And, (ok, here's an opinion, but it's not a very informed one, just logical, I think): if having traction and then removal of traction exacerbates your symptoms by further weakening your ligaments, you could use a hard collar while carefully working to improve your upper cervical musculature to assist the weak ligaments. I would definitely ask your surgeon about this concern before undergoing traction.

I do know that the neurosurgeons @jeff_w is recommending are experienced with EDS patients, which is very important. EDS can affect surgical healing and it is essential that your surgeon is aware of the possible issues before operating.

 

[xena]

Does anyone know if either the upright 1.5 3T or the supine 3T imaging for CCI/AAI would also show other possible physical neurological issues causing or contributing to CFS, like Chiari, tethered cord, spinal stenosis, etc? I'm not even sure what the full list of those things are @jeff_w ? (Thank you for your excellent website and the incredible degree of information you've shared with us on this, by the way)

Apologies if this has been previously answered in thread (please link me!)

 

[sb4]

I had an MRI done on my pituitary almost a year ago, supine, NHS. Any ideas if that would be any good? Would it have also scanned my cervical spine? @jeff_w

 

[ScottTriGuy]

I had an MRI done on my pituitary almost a year ago, supine

Curious if they found (or told you about) any abnormalities (empty sella syndrome, adenomas)?

And if you don't mind sharing: why were you sent for MRI of your pituitary?

 

[toyfoof]

Does anyone know if either the upright 1.5 3T or the supine 3T imaging for CCI/AAI would also show other possible physical neurological issues causing or contributing to CFS, like Chiari, tethered cord, spinal stenosis, etc?

I had a 3T supine MRI and it found stenosis, compression fracture, edema, and a few other things. Basically everything except CCI/Chiari. So yes, I think it’s quite valuable as a diagnostic tool, one more bit of info for our complicated bodies.

 

[Rufous McKinney]

As I understand it, improvement with a halo is a requirement for Dr. Bolognese to perform surgery.

Rent a halo?

 

[sb4]

Curious if they found (or told you about) any abnormalities (empty sella syndrome, adenomas)?

And if you don't mind sharing: why were you sent for MRI of your pituitary?

Not that I know of. They just said it was normal.

The MRI was due to low Testosterone. They wanted to see if the pituitary was the problem.

 

[Daffodil]

Does anyone know if either the upright 1.5 3T or the supine 3T imaging for CCI/AAI would also show other possible physical neurological issues causing or contributing to CFS, like Chiari, tethered cord, spinal stenosis, etc? I'm not even sure what the full list of those things are @jeff_w ? (Thank you for your excellent website and the incredible degree of information you've shared with us on this, by the way)

Apologies if this has been previously answered in thread (please link me!)

yes i would think so

 

[Daffodil]

canadians...look, we could have been saved!:

https://torontosun.com/2016/12/05/n...ging/wcm/90a4893f-b722-41e0-be79-a7f0679c1f67

 

[hezza]

I had a 3T supine MRI and it found stenosis, compression fracture, edema, and a few other things. Basically everything except CCI/Chiari. So yes, I think it’s quite valuable as a diagnostic tool, one more bit of info for our complicated bodies.

Hi @toyfoof Were your diagnoses picked up on by the standard radiology report? Or was it one the 4 experts?

It’s frustrating how many things have been missed in so many of us even when we fight to get ourselves thoroughly tested simply bc of the lack of expertise on the part of the ones ordering, performing, or interpreting the tests. The tests may not rule it in... but it still doesn’t mean it’s ruled out.

 

[toyfoof]

Hi @toyfoof Were your diagnoses picked up on by the standard radiology report? Or was it one the 4 experts?

All those diagnoses were picked up on the standard report. That report, though, starts at C2 - it doesn’t look at C0 and C1 which are of main interest for CCI. (I asked a neck surgeon that I saw about this, and he said those joints are usually very stable so they are not included in a standard report.) I did also send my scans to Dr. Bolognese who found no evidence of CCI.

 

[valentinelynx]

canadians...look, we could have been saved!:

https://torontosun.com/2016/12/05/n...ging/wcm/90a4893f-b722-41e0-be79-a7f0679c1f67

Neurosurgeons are an interesting breed. They tend to be very temperamental, in my experience. I knew one once, at the place where I did my internship... he was the sweetest, kindest, soft-spoken guy—outside of the OR. In the OR, he was nasty, picky, angry and violent! I've known more than one who were sort of like that, and plenty who were hard to deal with all the time. They seem to buy into the "rocket scientist/brain surgeon" trope and think they are God's gift to the world. One of the worst I ever met was a woman: she was clearly trying to outdo the men in the field in being a privileged brat. Anyway, imagine that sort of temperament in a long term relationship. The guy may be a brilliant surgeon, but unable to cope with normal social life. Which is not terribly surprising, given the nature of medical training, especially surgery and neurosurgery.

 

[Daffodil]

@valentinelynx yes apparently this guy was the nicest, most respectful and wonderful physician. he had shown signs of being a little off kilter before when the wife had called police over a domestic violence incident years prior. seemed to need to have a lot of control at home

 

[GypsyGirl]

All those diagnoses were picked up on the standard report. That report, though, starts at C2 - it doesn’t look at C0 and C1 which are of main interest for CCI. (I asked a neck surgeon that I saw about this, and he said those joints are usually very stable so they are not included in a standard report.) I did also send my scans to Dr. Bolognese who found no evidence of CCI.

I'm curious about this... do you know if the neurosurgeon meant C0-C1 are rarely written about in reports (only abnormalities mentioned), or that C0-C1 aren't really looked at while reading standard scans?