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

[Rlman]

No. I had severe symptoms no matter what position I was in, including neutral. This is typical, given what I've read of many people's experiences.

in the neutral position did your scans show anything abnormal @jeff_w ?

 

[jeff_w]

in the neutral position did your scans show anything abnormal @jeff_w ?

The two scans that I was diagnosed from were both flexion-extension. I was diagnosed by two different neurosurgeons (one of whom is not on my list of the "big 4"). They both talked to me about my abnormal measurements with motion. I never asked either of them if my neutral position appeared abnormal.

It's an interesting and meaningful question, with implications for everyone who can't access flexion-extension scans.

 

[Gingergrrl]

Just a regular supine 3T MRI.

From my situation, would you assume that this is what I will be having (a regular supine 3T MRI of my neck)? I know it is supine b/c I asked our doctor but do I need to specify to the Imaging Center that it should be "3T" (or is that basically a given)? I am waiting for our doctor to send the order to the Imaging Center and assume it will happen next week after Thanksgiving holiday. My plan is to do the MRI in December so I still have plenty of time.

 

[zzz]

From my situation, would you assume that this is what I will be having (a regular supine 3T MRI of my neck)? I know it is supine b/c I asked our doctor but do I need to specify to the Imaging Center that it should be "3T" (or is that basically a given)?

It's definitely not a given. Many imaging centers (such as mine) use both 1.5T and 3T machines. The 1.5T machines aren't necessarily inferior to the 3T machines for any given task; the newer 1.5T machines are much better than the original ones. The 1.5T machines have the advantage of a wider field of view and fewer artifacts, while the 3T machines offer the highest resolution.

When I called to make my appointment, I specified the 3T machine. The machine that was used for my scan looked brand new. But at the end of the scan, when I asked if it was a 3T machine, I was told that it was a 1.5T machine. I ended up having a meeting with the director of imaging services, who explained the various trade-offs between the 1.5T and 3T machines, and explained that the 1.5T machine was typically used for cervical spine scans. I told him about my request for the 3T, and that that was what my doctor wanted, though he noted that the 3T machine was not requested on my doctor's order. He thought that the scans I had would be quite sufficient for detecting Chiari malformation or CCI (he was quite familiar with both of them), but after a little negotiating, he said he would agree to repeat the scan at no charge if my doctor was not satisfied with the results of the 1.5T scan for any reason. I've gotten the report back from the center's radiologist, who did not find any signs of Chiari malformation or CCI on the 1.5T scan; I am now waiting to hear back from my doctor as to whether or not he wants the scan repeated with the 3T machine.

Short answer: If you want to be sure you're getting scanned with a 3T machine, you need to verify this at every step of the process.

I have the same doctor as @@jeff_w and @@Forçe e Honra and I currently have significantly worsening neck pain that originally started from a car accident in 2006 when I was hit and my car flipped upside down and I had horrible whiplash. However, after my doctor asked me many questions in our recent phone consult, he does NOT feel that I have CCI (and I agree) vs. that I have worsening cervical stenosis and radiculopathy.He wants me to get a regular MRI of my neck to compare to one that I had in 2010 (so it can help guide treatment in my PT or possibly provide other diagnostic info) but nothing beyond that.

In your case, the 1.5T machine might be the better choice. I'd recommend checking with your doctor.

 

[jeff_w]

From my situation, would you assume that this is what I will be having (a regular supine 3T MRI of my neck)? I know it is supine b/c I asked our doctor but do I need to specify to the Imaging Center that it should be "3T" (or is that basically a given)?

3T is newer technology. It's a more powerful MRI, with a stronger magnet, and it gives much more detail. My understanding is that many imaging centers haven't upgraded yet.

Here's an article explaining the differences between 3T and older MRIs.

You can try to call and verify ahead of time if it's 3T, although I've had a lot of experiences as @zzz did, with people giving wrong info over the phone.

 

[Gingergrrl]

It's definitely not a given. Many imaging centers (such as mine) use both 1.5T and 3T machines. The 1.5T machines aren't necessarily inferior to the 3T machines for any given task; the newer 1.5T machines are much better than the original ones. The 1.5T machines have the advantage of a wider field of view and fewer artifacts, while the 3T machines offer the highest resolution.

Thank you @zzz and this is really helpful. I have not scheduled the MRI yet, and am waiting for my doctor to send them the referral, so I have time to ask them if it is a 1.5T or 3T machine. I had a high resolution lung cat scan at this imaging center in 2017 and they were very knowledgeable and helpful. At that time, I needed to verify 100% that the CT scanner was equal to or better quality than the lung cat scan that I'd had at Stanford in 2016 (or the results would be useless as a comparison). I learned from that experience that the term "high resolution cat scan" can mean a million different things and you cannot assume anything.

but after a little negotiating, he said he would agree to repeat the scan at no charge if my doctor was not satisfied with the results of the 1.5T scan for any reason.

That is good and I am glad you spoke to the director and he was helpful.

Short answer: If you want to be sure you're getting scanned with a 3T machine, you need to verify this at every step of the process.

In your case, the 1.5T machine might be the better choice. I'd recommend checking with your doctor.

I agree and I am going to clarify w/my doctor before doing the scan b/c I honestly don't know which is the better one in my case.

Here's an article explaining the differences between 3T and older MRIs.

Thank you @jeff_w and I bookmarked the article and am going to read it for sure. That is really helpful.

You can try to call and verify ahead of time if it's 3T, although I've had a lot of experiences as @zzz did, with people giving wrong info over the phone.

I have as well

 

[Malea]

If your doctor is willing to write the order for flexion and extension views, that can give you even more information than just a standard static MRI (but is not necessary). Not all MRI facilities will do flexion-extension views though, and not all doctors are willing to write an order for one.

I didn’t realize that it is possible to have a flexion-extension (supine) MRI. I somehow thought the flexion-extension thing was only possible with a CT.
This sounds like a good option since I‘m to weak to have an upright mri.

But just to clarify it for me: Does flexion-extension mean that the head goes to the left and right or is a bend-and-stretch-position of the head meant?

Also: thank you very much for all the information that you‘ve shared, @jeff_w!

 

[Malea]

Does anybody else has trouble to get into the BTM-group on Facebook? I‘ve tried it several times in the last weeks and wasn’t accepted. Now I‘ve wrote the problem to an admin but didn‘t get an answer.

 

[Yuno]

Does anybody else has trouble to get into the BTM-group on Facebook? I‘ve tried it several times in the last weeks and wasn’t accepted. Now I‘ve wrote the problem to an admin but didn‘t get an answer.

Yes, I was wondering the same. My request has been pending for 2 weeks now. Maybe they were shocked at the sudden wave of so many of us trying to get in, that they temporarily decided not give out new memberships?

 

[toyfoof]

The same thing happened to me with the BTM group - I’m glad to know it’s not just me.

I want to thank everyone in this thread for the information and advice. I feel that CCI is a real possibility for me based on my symptoms and history, and I’ve left a message for my doctor requesting the MRI. I will keep the group posted if I turn out to be another with this diagnosis!

 

[Rrrr]

Is there an admin who can change the title of this thread? It’s super confusing as there’s so much on here about CCI. Maybe it should say, “Have you ruled out Chiari malformation or craniocervical instability as the cause of your ME/CFS?” Might help people more easily find and understand this thread.

hi dear PR admin/moderator: might we be able to change the title on this thread to include CCI, since that is widely discussed on this thread and would be easier to find if it were included in the title?

 

[Rlman]

But just to clarify it for me: Does flexion-extension mean that the head goes to the left and right or is a bend-and-stretch-position of the head meant?

i believe that felxion / extension means bending one's head/neck forward and backwards as far as one can

 

[Gingergrrl]

3T is newer technology. It's a more powerful MRI, with a stronger magnet, and it gives much more detail. My understanding is that many imaging centers haven't upgraded yet.

Here's an article explaining the differences between 3T and older MRIs.

Thanks again and I just read the article on the two types of MRI's and it is really clear and helpful. I will ask the Imaging Center which type of machine they have when I call tomorrow. I also asked our doctor and I am hoping that he will write on the MRI which type he wants (1.5T or 3T).

 

[brando]

I know a few people have mentioned this already - have the BTM facebook group stopped accepting members?
Much of this discussion is centred around reading more experiences and most new people (myself included!) can't access the group..
Does anyone have direct contact with the mods to find out what is going on?

 

[Mary]

BUMP

 

[Gingergrrl]

@jeff_w @zzz @Forçe e Honra I just scheduled my neck MRI with the Imaging Center for 12/10 and they were able to schedule me even though they have not received the doctor's order yet (b/c they know it is coming).

I asked them if the MRI would be 1.5T vs. 3T and they said that their center only has 3T machines (so that solves that issue)! They said they do neck/cervical MRI's all the time and the 3T machines are fine. I also confirmed for the millionth time that there would be no contrast dye

Then I contacted the hospital where I had the MRI of my brain and cervical spine in 2010 and am in the process of doing some forms to get the records (both the images and written reports) sent to me. At first I was only going to request the neck MRI (and not the brain) but then I decided that was stupid and that I should ask for both (since all they are doing is putting it on a CD and printing a report) and that way I will have all of the info should I ever need it in the future and not have to do this again!

 

[jeff_w]

I know a few people have mentioned this already - have the BTM facebook group stopped accepting members?
Much of this discussion is centred around reading more experiences and most new people (myself included!) can't access the group..
Does anyone have direct contact with the mods to find out what is going on?

Hi @brando @Yuno @toyfoof , @Malea

I have contacted the mods at Beyond the Measurement. They told me that they're backlogged but are letting people in -- it's just slow.

I'm going to see if I can become a mod or somehow make the approval process faster. I'll keep you updated on this.

 

[frozenborderline]

The size guide @JenB provided was helpful, but does anyone know a place to buy decent philadelphia collars for under 30$?

 

[Rlman]

another question for @jeff_w: before you got diagnosed with the supine CT flexion extension did you ever have other imaging of your brain? if so do you think CCI would have showed there if radiologists knew what to look for? Thanks!

 

[toyfoof]

@jeff_w - thanks for checking in with BTM for us. I’m looking forward to joining the group and reading about others’ experiences.

I left my doctor a message last week asking if he’d write an MRI order for me; he emailed today and said we can discuss it at my appointment on Thursday and he has some experience with this. He is generally open to trying things so I’m hopeful I’ll get the MRI order. I’m also going to call the neurologist I saw a few years ago who laughed at me when I told him I have ME but he’d done 2 brain MRIs looking for migraine causes and possible MS so maybe one of those will be of some use.