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

[jeff_w]

Thank you for your quick reply! Just to clarify, a neurosurgeon is the one who would order the CT scan right, not my primary care doc?

Your primary care can order it. It's easier that way. But it has to be flexion-extension of the skull and cervical spine. Not all doctors are familiar with that test, so your primary care will have to listen to you.

Wow, I just looked up Tethered Spinal Cord and one of the symptoms is discoloration of the lower back. I have red striations on my lower back, right above my butt, and my dad has the same markings. His mother has the marks on the nape of her neck, I think. And Dad has always had back problems.

Yes. Everything you're saying fits the profile of EDS, tethered cord, CCI, Chiari.

Dr. David S Bell also thought I had symptoms of EDS, because my fingers and wrists were hyper mobile, though they've stiffened up over the years.

EDS hypermobility decreases over time.

All these pieces must fit together somehow, someday!

Hopefully soon. Good luck!

 

[Jessrose21]

Your primary care can order it. It's easier that way. But it has to be flexion-extension of the skull and cervical spine. Not all doctors are familiar with that test, so your primary care will have to listen to you.



Yes. Everything you're saying fits the profile of EDS, tethered cord, CCI, Chiari.



EDS hypermobility decreases over time.



Hopefully soon. Good luck!

Gosh, you're quick! Thank you so much. I have a new doctor who is very open to learning new things about ME/CFS and will do what he can to help. We were about to start a course of antivirals off-label, but I'd sure like to rule these things out first. I hope there's a hospital that does that CT scan with the flexion-extension in my area of Rochester NY. Will be checking with my dr! Thanks again!

Jessica

 

[jeff_w]

Gosh, you're quick! Thank you so much. I have a new doctor who is very open to learning new things about ME/CFS and will do what he can to help. We were about to start a course of antivirals off-label, but I'd sure like to rule these things out first. I hope there's a hospital that does that CT scan with the flexion-extension in my area of Rochester NY. Will be checking with my dr! Thanks again!

After your CT scan, you need to get multiple copies of the CD images. Don't rely on the written radiology report. Radiologists miss Chiari and CCI all the time. Warn your primary care about this, so that he won't take the written report at face value.

The neurosurgeons to mail your CT scan results to: Dr. Henderson (Maryland), Dr. Bolognese (New York), Dr. Gilete (Barcelona, Spain). Don't bother with any other neurosurgeon. They will misdiagnose you, over and over.

 

[jeff_w]

That's scary. I was reassured when I had normal upright results in flexion extension etc. I am also waiting to see a geneticist re possible EDS.

Very typical experience, and this is why so many of us suffer for years.

At what point did you learn you had EDS - before the MRIs or once the instability was discovered?

After.

I wish you the best with your surgery, please do update on your progress!. I too was hoping for a treatable cause.

I'm already so much better in the halo. No POTS, no PEM. It's amazing. I had severe ME/CFS since 2014, and before that I had mild ME/CFS beginning in 2011.

I'll keep everyone posted after the fusion.

could you post a link to the product you are wearing - a trial of this could be very informative. many thanks.

It's a modern halo vest, and it looks like this.

 

[jeff_w]

@jeff_w was there a charge for the neurosurgeon to review your MRI? Thanks for all your help and posts!

I sent my MRI to Dr. Bolognese, who then scheduled a new patient teleconference. There was a charge for that.

But, you can send your imaging to Dr. Gilete (Barcelona, Spain) via computer upload. He reviews it for free.

Good luck!

 

[Jessrose21]

It's a modern halo vest, and it looks like this.

That vest looks painful. Do the screws go into your skin on your head?

 

[jeff_w]

That vest looks painful. Do the screws go into your skin on your head?

The pins screw into my skull.

It was painful at first. I had to take pain meds (Norco, Tramadol) for the first 10 days after they put it on (October 3rd). But after those first 10 days, it hasn't been painful at all.

 

[Jessrose21]

The pins screw into my skull.

It was painful at first. I had to take pain meds (Norco, Tramadol) for the first 10 days after they put it on (October 3rd). But after those first 10 days, it hasn't been painful at all.

I guess 10 days of pain would be worth getting rid of all the other symptoms. How ever do you sleep in that thing?

 

[jeff_w]

I guess 10 days of pain would be worth getting rid of all the other symptoms. How ever do you sleep in that thing?

Sleeping is easier than it looks. I squeeze a pillow between the halo bars. It's comfortable.

Getting out of bed takes some getting used to, but it feels completely natural after some time. The halo has convinced me that humans can adapt to anything.

 

[pattismith]

Chiari has been ruled out for me, but I suspect I suffer from intracranial hypertension, and I just read articles that found associations between Chiari and idiopathic intracranial hypertension

https://www.ncbi.nlm.nih.gov/pubmed/12699714

I have laxity in my joints, although not the kind of hyperlaxity seen in the EDS classic form;

I am 50, and now my hips are making sounds every time I move (sometimes it hurts).

I wonder if I should do the upright flexion extension test you are talking about jeff

 

[Rlman]

It's a modern halo vest, and it looks like this.

WOW! well it's great it has taken away so many symptoms for you @jeff_w ! when you wear the halo does your neck / skull feel stretched upwards?

 

[Gingergrrl]

Getting out of bed takes some getting used to, but it feels completely natural after some time. The halo has convinced me that humans can adapt to anything.

I agree and I am so glad the halo is helping you and you were suffering so much before you got the halo.

 

[bombsh3ll]

It's a modern halo vest, and it looks like this.

Bummer, I was hoping it was something like a neck brace that I could have ordered from Amazon.

Thrilled that it is working for you though and I will definitely try and get my DVD images copied for expert review. Thanks for sharing all this info, it is really helpful.

 

[dreampop]

I had severe PEM for years, the classic ME/CFS differentiating type. Sometimes, even while lying flat, just watching a TV screen would cause severe PEM. I also had EBV (positive IGM and PCR) as well as low NK Cell function. At my worst, I couldn't speak, due to exhaustion. Overall, I've had severe POTS, MCAS, and CFS/ME. I've been hospitalized multiple times for MCAS.

It turns out that I have cranial settling, with my skull sinking downward onto my spine, causing brain stem compression. This sinking downward isn't outwardly visible, so you couldn't tell from just looking at me. (This sinking downward also is not a Chiari Malformation, but it is similar, as it can result in cerebral spinal fluid problems as well as autonomic nervous system issues.)

I have always had upperneck/spine problems that seem to excede those in me/cfs, so this was very interesting to read. Did you by any chance have a permanent or semi permanent head pressure feeling w/o actual increase in intracranial pressure? Or neuromuscular aches coming from the neck or upper back, or from the jaw down to the upperback?

I will definitely be check this stuff out. That comrpession by lax ligaments sounds a lot like what I experience.

 

[jeff_w]

I have always had upperneck/spine problems that seem to excede those in me/cfs, so this was very interesting to read. Did you by any chance have a permanent or semi permanent head pressure feeling w/o actual increase in intracranial pressure? Or neuromuscular aches coming from the neck or upper back, or from the jaw down to the upperback?

I had everything you mentioned, except for the permanent/semi-permanent head pressure.

I will definitely be check this stuff out. That comrpession by lax ligaments sounds a lot like what I experience.

If you're going to go down this route (which you should, IMO), you'll need to get a very specific type of MRI to catch this problem.

The exact order should be an MRI of the skull and cervical spine, upright with flexion-extension. An MRI that is flat won't help you. It needs to be upright with flexion-extension. Without flexion-extension, the problem will be missed.

During the upright MRI, you'll need to flex your head forward as far as you can. You'll then have a neutral image, head above shoulders normally, without flexing. Then, you'll need to bend your neck backwards as far as you can. You need to demonstrate your entire range of motion for this test, or the results will be invalid. (The radiology techs will give you some guidance, but they don't always give detailed instructions, so I included them here. In my case, he gave me really vague instructions, which gave an invalid image, so I had to repeat the test.)

A few days or weeks after the MRI, you'll receive a radiology report. Ignore it. Radiologists aren't trained to look for this problem, craniocervical instability (CCI). So, the written report is meaningless for this purpose.

You'll need to request multiple hard copies of your MRI CDs. Then, you'll need to mail the MRI CDs to one or more of the following three neurosurgeons: Dr. Bolognese (New York), Dr. Henderson (Maryland), or Dr. Gilete (Barcelona, Spain). These are the only neurosurgeons who consistently know how to read these images to diagnose CCI

Good luck!

 

[jeff_w]

Bummer, I was hoping it was something like a neck brace that I could have ordered from Amazon.

You could try a Philadelphia cervical collar. This helped me to an extent, at first. But as my condition progressed, the collar didn't work anymore.

 

[jeff_w]

I wonder if I should do the upright flexion extension test you are talking about jeff

Yes! You should.

I never would have guessed this was the solution to my ME/CFS. There have to be others here like me. If this is your problem, there is a good chance that surgery will fix you.

 

[jeff_w]

WOW! well it's great it has taken away so many symptoms for you!

It's been amazing! And I look forward to no longer needing it after fusion surgery.

when you wear the halo does your neck / skull feel stretched upwards?

No, the neurosurgeons are very careful to keep your head in "neutral." Not too much pull, just a normal position.

 

[dreampop]

I had everything you mentioned, except for the permanent/semi-permanent head pressure.


If you're going to go down this route (which you should, IMO), you'll need to get a very specific type of MRI to catch this problem.

The exact order should be an MRI of the skull and cervical spine, upright with flexion-extension. An MRI that is flat won't help you. It needs to be upright with flexion-extension. Without flexion-extension, the problem will be missed.

During the upright MRI, you'll need to flex your head forward as far as you can. You'll then have a neutral image, head above shoulders normally, without flexing. Then, you'll need to bend your neck backwards as far as you can. You need to demonstrate your entire range of motion for this test, or the results will be invalid. (The radiology techs will give you some guidance, but they don't always give detailed instructions, so I included them here. In my case, he gave me really vague instructions, which gave an invalid image, so I had to repeat the test.)

A few days or weeks after the MRI, you'll receive a radiology report. Ignore it. Radiologists aren't trained to look for this problem, craniocervical instability (CCI). So, the written report is meaningless for this purpose.

You'll need to request multiple hard copies of your MRI CDs. Then, you'll need to mail the MRI CDs to one or more of the following three neurosurgeons: Dr. Bolognese (New York), Dr. Henderson (Maryland), or Dr. Gilete (Barcelona, Spain). These are the only neurosurgeons who consistently know how to read these images to diagnose CCI

Good luck!

I will heed the instructions! 2 more questiosn, probably don't mean anything - was the neuromuscular stuff predominately one sided and did you have any sinus issues?

 

[bombsh3ll]

I never would have guessed this was the solution to my ME/CFS.

What was it that led to you exploring this avenue Jeff? I read your earlier thread about IV saline, florinef etc and your presentation is very similar to mine. Did those earlier treatments that were so helpful eventually stop working?

I have a feeling those three neurosurgeons are going to be kept busy looking at a lot of scans in the next while. Was Dr Bolgonese familiar with EDS and POTS? Just once I would like to not get a blank look and have to start from the top!

You could try a Philadelphia cervical collar.

I think I will try this, thanks.