20 patients now found positive for CCI / AAI, there must be many more...

[frozenborderline]

I looked at the original email from bolognese and he mentioned that there can be a rebound effect from traction. My initial response seems to be indicative of cci, but I had a session yesterday where I didn’t get any relief besides a mild relief and I also experienced a lot of discomfort Bc my neck muscles are now so weak that they tend to spasm or tense up sometimes. So it was like I was guarding during traction and it actually tired me out even tho it was a very simple thing.

The other thing sort of complicating my responses to it is that I’ve had my sister give me very rough and untrained traction and sometimes it really helps?? I think it depends what my symptoms are prior to the traction. I’ve had my vertigo go away from my sister doing traction sometimes but it doesn’t seem to help really dramatically with fatigue. I am almost uncomfortable with the ambiguity of my responses, because I am considering surgery since my quality of life is so low but I would think traction would be a test of how I respond to surgery. Perhaps it depends a lot on how my muscles are relaxed etc.

My physical therapist filled out a form to try and get this inflatable traction device covered by insurance. He thinks this is a better idea than over the door traction and says that some of these devices can be quite strong and even go up to 50 pounds. He agrees with me that it may allow me to have a better evaluation of my response to traction since I can do it more often and personalize the session.

 

[frozenborderline]

I am starting to be really concerned about this as a lot of my symptoms especially when I worsened in December were sort of classic to cci, I had a dramatic worsening that I can’t account for any other way. I had new symptoms of neck weakness answer positional vertigo and my pots went so much more crazy. I also had new sound sensitivity and light sensitivity. I had relief in a collar to an extent —mostly from my vertigo moreso than pots. I have been using a collar so l no longer know if my relief is due to deconditioning from the collar, although while that would explain my neck weakness and pain while not in collar, I don’t know if it would explain how the collar relieves my neurological symptoms.

 

[StarChild56]

@debored13 - I am really sorry you are having worse symptoms. I wish I had something to offer other than wishes for you to feel better and get good answers. Hope the inflatable traction is approved. My PT said what she likes about laying down having traction is that you can relax all your other muscles vs. when sitting up for over the door traction, you can not.

 

[gbells]

I think the CCI could be due to a slow viral infection process in the ligaments supporting the bones. Over time they become weak and allow the increased movement.

 

[valentinelynx]

I was actually just reading my MRI results from Start of 2017.

I don't really quite understand it, but I have mild disc protrusion, which results in mild central canal stenosis, but no foraminal stenosis. The comments were: I don't even know if this is at all relevant to the posting?

My GP explained what I have is just disc wearing and it happens as we age. Is that correct? Do I need to investigate my results further?

Your MRI results are not very unusual, your GP is correct. When looking at a MRI, one has to take into account a patient's symptoms. The strange thing is that one can have a grossly abnormal MRI without symptoms, and vice versa.

Also, this standard kind of cervical MRI (supine and without flexion/extension views) is apparently not very useful in assessing for CCI/AAI. Unless you have severe obvious Chiari malformation, you need an upright MRI and views with your head back (extension) and forward (flexion) to show the abnormality.

Here's a pretty good article on the symptoms of cervical spine stenosis and cervical nerve root stenosis.

 

[CactusJilly]

I'm just curious what number we are up to now since this posting...

 

[mattie]

I'm just curious what number we are up to now since this posting...

https://forums.phoenixrising.me/threads/tracking-cci-aai-mri-treatment-outcomes.62720/

 

[Oliver3]

Hi everyone. I'm thinking of seeing this guy for some treatment. Anyone care to cast their eye over the paper he's produced? https://treningogrehab.no/myalgic-e...l_oZoqYH526O3Rh_1Sbr9_96lqFn3AjGP0sBBL7zv7q58

 

[xrayspex]

Hi everyone. I'm thinking of seeing this guy for some treatment. Anyone care to cast their eye over the paper he's produced? https://treningogrehab.no/myalgic-e...l_oZoqYH526O3Rh_1Sbr9_96lqFn3AjGP0sBBL7zv7q58

where would you see him?

 

[Oliver3]

Hi. He practices in Norway. Sadly, i couldn't the green light from my GP to get the required MRI's

 

[hezza]

I have had traditional MRI but nothing else.
If anyone who lives in northern California and knows of anyone I could see that would test for this I would greatly appreciate it!!!!! thanks so much.

@humanrising I just spoke with Bolognese who accepts insurance & does Skype consults. When asked what imaging he required he said 1.5 Tesla or higher supine MRI w/out contrast. (as of March 10, 2019) No special views required. So you may very well already have that imaging & would simply need to fill out the online paperwork & send in your scans.

 

[frozenborderline]

@debored13 - I am really sorry you are having worse symptoms. I wish I had something to offer other than wishes for you to feel better and get good answers. Hope the inflatable traction is approved. My PT said what she likes about laying down having traction is that you can relax all your other muscles vs. when sitting up for over the door traction, you can not.

i phrased this poorly. I meant I'm concerned that cci might not be the cause of my symptoms! Because my responses to traction are semi-equivocal. Sometimes i have good responses to traction, especially when I get a flareup of dizziness, etc. I would say more than half the times I did traction with the PT I got some form of relief. And sometimes if I go without wearing the collar I can induce an episode of almost-paralysis... I did this once as a weird form of self-harm when i was angry, but I was surprised how effective it was.

But I would expect my responses to traction to be pretty clear if fusion surgery was going to help me. So who knows

 

[frozenborderline]

Im curious about the possible relationship between mold illness and cci. I see a possible link two directions. Cci could exacerbate mcas which could cause reactivity to mold. But mold, along with viruses etc , can increase production of mmp-9, which could degrade collagen. Also there’s a theory that mold could lower immunity and allow for viral infection to be more intense, viruses could easily degrade collagen.

 

[frozenborderline]

On the mmp-9 thing I only have one specific primary source yet for mold causing elevation of this but the cirs doctors test for it along w vegf, tgf-beta, etc. there’s a good section on me-pedia about the role of mmps in collagen degradation

https://www.sciencedirect.com/scien...RZYMQWMS5OnvHNGZr4RF9c6cwhQMFNAu2RGki9AOH9JbM




https://www.facebook.com/ufi/reacti...5046646256_306569549979139&av=100033985935474

 

[humanrising]

hoping those who have been to dr B or further in the process then me could give me your thoughts and help me with my concerns.
I ve posted this already but the jest is..... I spoke to his office and asked about sending dr b a cervical MRI with flexion and extension and any other info he would like done with a Tesla 3 MRI since my kind GP was willing to write it up before she left on maternity leave.
I called the office and was told by the receptionist that it wasn't necessary he could read any MRI. I asked in as many kind and respectful not pushy ways why I thought it might be necessary to get this "other" MRI done. she said, no fill out the papers on line send the MRI and we will get back to you.
I let it go wrote about it here and then called back again. She then said they had a meeting and she will send me ALL the new paper work he now wanted from "us" and to send the old MRI of my cervical vertebrae and my lumbar vertebrae.
I send it ,then the receptionist called me and made an appointment for June for a teleconference. no other information.

I want my "diagnosis" to be heavily weighted on my MRI. ( the best MRI for his reading) I am worn out on misdiagnosis's based on my symptoms. I wasn't expecting so much paper work on my symptoms as part of the basis of a diagnosis.
300.00 is a lot of money for me and I am now afraid that my "appointment" is going to be being told I should have another MRI done. Something I was trying to avoid by calling the office to find out exactly what he wanted before I sent anything from the bloody beginning.
wondering if anyone else has sent him a standard MRI and had him make a diagnosis based on just that?

could you tell how much he weighed the symptoms vs the MRI?

were you told anything prior to your consult?

did the office tell you they didn't see anything on the MRI or did you have to have an appointment with him to

hear that you didn't have anything on the MRI?

have no idea if this appointment means he sees something or I have to have this appointment to be told he didn't find anything.

thanks so much, frustrated!!!!

 

[toyfoof]

@humanrising i was told by his office that I did not meet their diagnostic criteria and therefore they would not be scheduling an appointment with me. I had a supine 3T MRI and filled in all the paperwork. So I would guess if they scheduled an appointment it means they see something worth discussing that they think they can help with.

 

[frozenborderline]

My situation has worsened because I was frustrated w not getting super clear responses from traction and starting to doubt my cci diagnosis and so when I got my new traction device, I went up to 30 pounds, recklessly overdoing it. Boy, I’m sure I have cci now. I had the worst rebound effect, basically lasting two days so far, and it’s right when I have to travel to a new doctor for an appointment. I’m sure my instability has worsened. Both neck ache and the neurological symptoms. It’s my fault, and now I’m bummed that talking to bolognese will likely take awhile because I’m worsening

 

[humanrising]

@humanrising i was told by his office that I did not meet their diagnostic criteria and therefore they would not be scheduling an appointment with me. I had a supine 3T MRI and filled in all the paperwork. So I would guess if they scheduled an appointment it means they see something worth discussing that they think they can help with.

thank you for your response, I still wonder if he is going to tell me to get other imaging but sounds like "he found something" .
did everyone just go ahead without talking to dr b's office and get the proper MRI prior to connecting with his office?

 

[humanrising]

My situation has worsened because I was frustrated w not getting super clear responses from traction and starting to doubt my cci diagnosis and so when I got my new traction device, I went up to 30 pounds, recklessly overdoing it. Boy, I’m sure I have cci now. I had the worst rebound effect, basically lasting two days so far, and it’s right when I have to travel to a new doctor for an appointment. I’m sure my instability has worsened. Both neck ache and the neurological symptoms. It’s my fault, and now I’m bummed that talking to bolognese will likely take awhile because I’m worsening

I am so sorry to hear your worse. I spend so many nights in agony with my neck trying to find some relief to attempt sleep. nights are hell.
now that I know there might be something I am too anxious to find out what it is and what I should and shouldn't do, june for me seems forever.
If you haven't tried this ……. when I am really flared I go and get a Toradol injection ( anti inflammatory ), sometimes a magnesium injection ( muscle relaxant) and a b 12 injection ( doc said it helps with headache and since I always have a headache along with neck pain I take that too..... just to "calm" things down. it doesn't always help but often it brings some of the pain and trauma down. maybe look it up and see if it sounds like it can help. wishing you the best

 

[toyfoof]

did everyone just go ahead without talking to dr b's office and get the proper MRI prior to connecting with his office

I conversed with both Dr B and his assistant, Irene, before ordering my MRI. They both told me to get a supine cervical MRI, 3T if possible.

I also talked to Dr Gilete’s office in Barcelona and they gave me different instructions, because they want an upright MRI with the various views. I decided to go with the Dr B recommendations because he’d take my insurance and my PCP (who ordered the MRI) is in a system with a 3T MRI but not an upright.