Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS
- Thread starter SK2018
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Hi everyone,
I posted in this thread back in October about having cci, but the story ended up being more complex than I thought. Just signed in and saw the above comment and thought I should update everyone as it may help some people who are getting false negative diagnoses.
So, back in October I got a flexion extension and measured my own clivo axial angle. I measured it around 135, and figured this was my issue. I contacted Bolognese and set up an appt. This was online. He told me my clivo axial angle was 137-138 and the other measurements were in normal range, so I didn’t have cci.
I intuitively felt like this was wrong due to my symptoms. I won’t bore you with those details. So I decided to go see Henderson. If he said I was fine, then this wasn’t my issue.
Henderson has you get upright flexion extension mri, rotational ct, lumbar mri, and a urodynamic study to get an appt. I got in last month. He also said I didn’t have cci. But he performed a neurological exam on me which was abnormal. He then looked at my rotational ct scan and I had rotational aai to both sides.
I want to tell everyone to make sure they get all the above mentioned scans. Particularly, the rotational ct along with your mri. The others will help identify tethered cord. In my case I was all clear by Bolognese, but the scan he doesn’t order showed aai. Is this what’s causing my issues? I had weird neck clicking start around the same time I got autonomic abnormalities. Considering this is the only thing wrong with me I can find, it’s possible, but I don’t want to jump the gun.
I think Bolognese is a great doc, and possibly the best surgeon out of the bunch. But, I think the lack of scans that he orders (ie he doesn’t do flexion/extension or rotational ct) may limit his ability to identify some issues. That on top of the fact that I’m sure his office is swamped, make sure to get all the scans and get two opinions.
I haven’t seen many others who have aai without cci on mri. But this is apparently what I have. I hope this can help someone.
Cc: @jeff_w @JenB Since you guys are getting the word out in this area, it may be something that can help people to put on your website. If you want more info please feel free to dm me.
Does he does the prescription before you see him? I am having issues getting a prescription
@Seven (formerly lnester7)
No. You have to convince a local doc to order them. You have the option of going to see him, then he orders, then you go back. But since most people travel, this is not the best option for most people.
Also, when I went to get the rotational ct, the guy who did the scan had never done one, so I had to explain it to him. He was super cool about it, just make sure to explain it, because they probably have no idea. For the scan, you need to look all the way to the left, get a scan. Then, you do the same on the right. So, you’re running two separate ct scans.
If the ct person is confused, just tell them your doctor is suspicious that your brain stem may be getting some compression when you turn your head. So, they want to get an image of it. Good luck!
No. You have to convince a local doc to order them. You have the option of going to see him, then he orders, then you go back. But since most people travel, this is not the best option for most people.
Also, when I went to get the rotational ct, the guy who did the scan had never done one, so I had to explain it to him. He was super cool about it, just make sure to explain it, because they probably have no idea. For the scan, you need to look all the way to the left, get a scan. Then, you do the same on the right. So, you’re running two separate ct scans.
If the ct person is confused, just tell them your doctor is suspicious that your brain stem may be getting some compression when you turn your head. So, they want to get an image of it. Good luck!
GReat explanation, is this laying down or has to be upright? I cannot find a close upright MRI place near me.
Laying down works great. It can be done on any normal ct scanner.
Yes my neck makes crunching/cracking noises. Hope you find answers!
I am also getting a venogram on the advice of Dr G - he now requires it on all patients before surgery as a few people recently have turned out to have venous obstruction additionally. I had the MRA when I was there in Barcelona, it wasn't a requirement at the time, I asked for it in view of my cerebral hypoperfusion (it was normal).
I struggled to find a self referral place offering 3t for MR venogram but am now getting a CT head and neck venogram with Dr Higgins in Cambridge, UK, which Dr G also accepts.
I do have splitting headaches which I attribute to cerebral hypoperfusion, but I don't have any focal neuro symptoms.
B xxx
Daffodil
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ohhh great that you found a place to give you a similar test.
you said you had an MRI in barcelona so why do you need a new CT venogram?
you saw Dr. G but did not have surgery yet, is that correct? sorry memory...
i found a hospital here in toronto that does it too but my local specialist says he does not feel comfortable ordering it. so, since i cannot have surgery anyway, i have decided to skip it for now.
i had a SPECT scan decades ago. despite the brain fog being bad, the scan was normal
xo
I only had MR Angiogram in Barcelone, to look at the arteries. I did not think (nor was I advised) to have the veins done too. I wish I had done now, it would have been cheaper, easier, avoided CT radiation and if I do have outflow obstruction, would have identified it sooner.
I went to see Dr G but have not had surgery, am still considering.
B xxx
Daffodil
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but i thought MRA was the same thing as a venogram...i thought they automatically look at all the vessels and give you gandolinium and all that. maybe i am confused lol
ever think of trying stem cells? if that doesnt work you can always have surgery. but thats another year of waiting to see if something works..
Yes they can do both at the same time, but I only requested and paid for the angiogram at the time(MRA). That just looks at the arteries. The venogram (MRV) looks at the veins. It probably wouldn't have cost that much extra to do it in one procedure & I wish I had now.
No, I just do not think there is evidence for stem cells if the problem is your skull sinking down, & it is not something I have access to anyway.
How about you?
B xxx
Daffodil
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u can go to colorado and get them. that is what i am doing next month. but only because i cannot afford surgery
I could not travel to Colorado but I would be really interested to hear how it works out for you! How is the treatment done?
B xxx
Daffodil
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Daffodil
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this doctor also has a bunch of videos:
@bball222 way to advocate for yourself! Ugh- this is what's so concerning. Being given an "all clear" and then finding out there actually IS an issue. That's why I think it's sooooo crucial to have a set of clear, standard tests to rule out any of these things...
My question is whether a rotational MRI would be acceptable vs a rotational CT?
My question is whether a rotational MRI would be acceptable vs a rotational CT?
Moderator notice> Posts #1618, #1619, and #1620 were moved from Tracking CCI / AAI MRI & Treatment outcomes
@Daffodil thanks for sharing those videos, I will def watch later! I wonder if it works for cranial settling - as in if the skull has sunk too low, I imagine it needs to be physically pulled back up into place, whereas people who have the other types of instability, their necks are in the right place some of the time, if you see what I mean?
B xxx
B xxx