Tracking CCI / AAI MRI & Treatment outcomes

I have been tested for CCI / AAI / Chiari / Spinal Stenosis with specific scans and tested

  • Positive

    Votes: 25 64.1%
  • Negative

    Votes: 14 35.9%

  • Total voters
    39

xrayspex

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Today, I just had my UPRIGHT cervical MRI with flexion, extension and rotation views per Jeff's @jeff_w 's recommendation. It just so happens that there is a place right here in the Phoenix area called Stand Up MRI of Arizona. I was told by my doc at Stanford, when I asked him for a script for this, that:

1. He would NOT write for me this imaging
2. That the only upright MRI machines belong to research institutions and would be impossible for me to get in.

After a down-and-out argument where I wanted to punch him in the face Well, a quick Google search later and I downloaded their form, filled it out, and got an appointment in a week. Insurance did not cover it, but it was only $600. (I know)

So, I got my three copies on DVD no problem. Now, to send them off to the experts back East...what should I include in my cover letter??

When I read first read @jeff_w 's "Mechanical Basis" and then @JenB 's subsequent post, I broke down in tears. I *KNOW* this is going to be me. I was a champion high jumper in high school but I had an improper landing technique, landing on my face and head. My neck pain has been unreal over the last 27 years. ME, POTS, MCAS has gotten progressively worse every year.
that is incredible that you can self refer for the mri and cost not bad, they want more than that for dmx here in wi. did they also give you a report (and if so did it seem like they knew what they were doing?)
 
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Scans required:
- Upright MRIs with flexion, extension, and rotational views, or
- Supine CT scans with flexion, extension, and rotational views, or
- 3T supine MRI.
Hi @mattie, I’m a longtime reader but new to posting so I don’t want to mess up here but I have been investigating being assessed by Dr Bolognese & even spoke to him personally to find out what imaging he required. As of about March 10, 2019 he said for initial assessment a supine MRI 1.5T or higher w/o contrast is what he needs. No special views required. This may help many who have already had imaging done since becoming ill. He said to go ahead & send my entire spine images from 2014 (supine MRI 1.5 Tesla when I was already severely ill.) Perhaps his skill in recognizing this condition is getting keener as the cases flood in...
 

StarChild56

Senior Member
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I am being investigated for CCI. Can I ask for a full description of the MRI and additional views required? Thanks.
I have not been on for a while so I apologize for the delay in responding.

In my case, Dr. Bolognese accepted a supine .3 Tesla open MRI with extension and flexion. However, he did say that they are poor quality pics.
 
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Scottsdale, AZ
that is incredible that you can self refer for the mri and cost not bad, they want more than that for dmx here in wi. did they also give you a report (and if so did it seem like they knew what they were doing?)
Hi, StarChild56. Yes I did get a report and all said "normal" BUT I just heard back from Dr. B's office (voicemail) and they said, "Dr. Bolognese has accepted your case and call us to schedule a phone appointment." SooOOO...I'm guessing Dr. B saw something in the MRI that whoever read it did not...
 
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Hi, StarChild56. Yes I did get a report and all said "normal" BUT I just heard back from Dr. B's office (voicemail) and they said, "Dr. Bolognese has accepted your case and call us to schedule a phone appointment." SooOOO...I'm guessing Dr. B saw something in the MRI that whoever read it did not...
Goes to show an expert is needed to dx CCI/AAI from an MRI. But apparently the MRI was done right. I read someone did an upright MRi twice in Frankfurt, Germany, but the neurosurgeon could not use it because the positions were wrong. In the end they went to Medserena London to have it done properly.

May I ask what the cost was to have dr. B. look at your MRI?
 

soti

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Dr. B took my case and said one of my measurements was borderline as to whether surgical (in my measuring, it's horizontal Harris measurement, but I don't have a report yet). Said to try cervical traction with a physical therapist, also a lumbar puncture and if either is positive the next tests would be "invasive". My scans were supine MRI flexion-neutral-extension.
 

StarChild56

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Hi, StarChild56. Yes I did get a report and all said "normal" BUT I just heard back from Dr. B's office (voicemail) and they said, "Dr. Bolognese has accepted your case and call us to schedule a phone appointment." SooOOO...I'm guessing Dr. B saw something in the MRI that whoever read it did not...
I'm so sorry I just checked on this thread today. Just a tip, which you may already be aware of but if you use the "@" before someone's screen name it will appear in a drop down menu and by selecting it, the poster will get a notification :)

Yes, absolutely - the radiologists who read them are not trained to look for CCI.
 
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I sent my 3T MRI scans to Dr Bolognese and he said it’s all come back normal :) it’s such a relief. Although he did mention I could try cervical traction with a physiotherapist and if I get dramatic results then I can contact him again. I’m not entirely sure why but I think maybe he’s said that because he’s said that to me in all the 3 emails (like when I first contacted him) but I told him I didn’t do traction due to my situation here in the U.K. (have explained over on the other thread). But as my MRI has come back normal I’m very happy. As I’ve been an extremely panicky OCD-filled person for the past month or so and have really struggled to cope with this! Now hopefully on to calming down my nervous system with all the things I did before that helped me.:)

(I have severe M.E btw, and I don’t have EDS. I don’t have normal PoTS, I have the hyperadregenic type if I have it. No hypermobility except the absolute slightest in my elbows which may not even be enough to say elbow hypermobility. I was however born with nervous system “fight or flight problems”, autism which requires a lot of daily reassurance (which wasn’t diagnosed until I was 27) and severe sensory processing difficulties which I never had help for. Just Incase anyone’s interested. :) )
 
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I sent my 3T MRI scans to Dr Bolognese and he said it’s all come back normal :) it’s such a relief. Although he did mention I could try cervical
Congrats @rainbowbluebells! I just sent my paperwork to Bolognese Monday (imaging discs by snail mail) & received this Wednesday which seems a little early to have actually analyzed my discs & paperwork...🧐?

Try cervical traction with your local physical therapist.

If you obtain dramatically positive results with the traction, then email me back about your feedback, and we will select you for a visit or a videoconference.

If the traction does not provide dramatically positive results, then proceeding with the next steps is not indicated.


PB



Does that sound similar to your first message from him even before he looked at your scans? He doesn’t even mention my imaging.
 
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Congrats @rainbowbluebells! I just sent my paperwork to Bolognese Monday (imaging discs by snail mail) & received this Wednesday which seems a little early to have actually analyzed my discs & paperwork...🧐?

...

Does that sound similar to your first message from him even before he looked at your scans? He doesn’t even mention my imaging.
If it helps, I sent mine in mid April and the office called to tell me that he has accepted my case and to make a video appointment which is set for this Friday. I'll keep you all updated
 
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If it helps, I sent mine in mid April and the office called to tell me that he has accepted my case and to make a video appointment which is set for this Friday. I'll keep you all updated
Hi @CactusJilly, so Dr B didn’t recommend you do traction w/ pt or Cervical collar first? He just accepted your case straight away.? What type of scans did you have done? Yes, please keep us posted!
 
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Location
Scottsdale, AZ
Hi @CactusJilly, so Dr B didn’t recommend you do traction w/ pt or Cervical collar first? He just accepted your case straight away.? What type of scans did you have done? Yes, please keep us posted!
I got the scans that @jeff_w recommends on his site: Upright MRIs with flexion, extension, and rotational views
On my own, I found an upright MRI center here in the Phoenix area. I paid out of pocket to have it done; it was $600 (which really didn't seem too bad considering other crap I've paid for over the years with this disease.)

Yes, he accepted my case straight away, about 6 weeks ago, now. There was no recommendation of anything; just that "Dr. Bolognese has accepted your case and would like to make a video appointment." So, I made one. It's Friday.

I will for sure keep everyone updated. I started my own thread here in the forum, too.
 
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Congrats @rainbowbluebells! I just sent my paperwork to Bolognese Monday (imaging discs by snail mail) & received this Wednesday which seems a little early to have actually analyzed my discs & paperwork...🧐?

Try cervical traction with your local physical therapist.

If you obtain dramatically positive results with the traction, then email me back about your feedback, and we will select you for a visit or a videoconference.

If the traction does not provide dramatically positive results, then proceeding with the next steps is not indicated.


PB


Does that sound similar to your first message from him even before he looked at your scans? He doesn’t even mention my imaging.
He sent me the same email. I got that email from him when I first contacted him, and also he said the same thing after I sent in my supine MRI which he said was quite normal.. and to try traction. At the time I thought that meant he had ruled out CCI and I was quite relieved. Now though, I’m wondering if that means he actually can’t rule out CCI and that’s why I need to try traction. It’s probably because I haven’t done rotational views or flexion or extension.
 
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I was tested positive for cervical stenosis by Dr. Gilete and possibly a cervicomedullary syndrome with CCI, AAI and subaxial instability, but he recommends further DMX scans.
My CXA is 134 in neutral and 130 in flexion, the Grabb measurements are below 9mm, but the Translational BAl is 4,3 mm.

The thing is that in the meantime after doing the Upright MRT I had two major crashes, which I haven’t recovered from, so now I’ve gone from moderately severe to nearly very severe and can’t do the dmx scans at the moment.
Iam also pondering the question at what point you are too sick to be operated on..., but that may be a question for another thread.
Anyway I am hoping to get the scans done somehow in the near future (maybe it’ll work with the help of Ativan) and then have a short Skype call with Dr. Gilete to see what he thinks...whether there are non invasive measures that could help. And if I get that far, I’ll update;)