An indication for Atlanto-Axial Instability after my Upright MRI

[gm286]

Hi there,

Not too long ago I posted on the Introductory Members area discussing my plans to further my investigation on what may be causing a host of symptoms (pain, joints, inflammation and fatigue) over a period of ten years.

It only kicked in recently that it was time to bite the bullet, look heavily into ME/CFS information online, and push to try to find some answers in this field. I've been suffering with symptoms of an unknown etiology for too long and decided to put a few things in place going forward. I currently live in France and am being followed by an immunologist.

Owing to the discussion on these boards and the CFS roadmap, I have been trying to look into both neuro-chemical and metabolic issues, as well as more recently, neuro-mechanical CCI/AAI symptoms. I booked for an Upright MRI scan at the Medserena London Clinic a few days ago and received my results.

After Dr Gilete's Centre in Barcelona recommended that I get the scan, I took up the appointment. Jeff, who posts on here, mentioned this doctor as being a neuro-surgeon specialist so when his secretary advised I consider the Upright MRI, I moved forward.

I wanted to attach the conclusive part (two sentences) at the end of the report by Prof. Francis W Smith (inventor of the MRI it seems) who visits the Medserena Clinic and looks at patients' scan. He then forwards his report to a neuro-surgeon.

I am not exactly sure how AAI ties back to ME/CFS, but it seems that my scans do point in the direction that I have it. I may update this thread with further information from the doctor in Barcelona after he himself writes back and sees my report.

 

[Gingergrrl]

I'm not sure how to interpret this but am tagging @jeff_w in case he can help. Best wishes to you!

 

[gm286]

I am posting my progress just in case it might help someone who is looking into this aspect of the illness. Also wondered if others with AAI (or with other neuro-mechanical reports) had any experiences with treatment which they found helpful and which they would like to share.

 

[gm286]

I got back from Barcelona a couple days ago. I am just going to update this thread with most of what happened and was discussed with the neurosurgeon (one of the three neurosurgeons considered to be knowledgeable in CCI/AAI issues).

First, just an insert of what I marked on another thread ("Question to those with CCI/AAI"):
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Hey guys.
Okay so it's been a while -- I'd really like to use the thread I started around December to really update in full what went on during the discussion with the Dr in Barcelona.

Suffice to say, I was apparently doing well compared to the other patients he was working with and on (surgery). They suspect I am in the "early stages" of CCI/AAI symptoms and progression. He spoke about how 'Quality of Life' should largely dictate one's choice in opting for surgery or not. He explained it is a complex surgery, that neck mobility after surgery was reduced in all directions by 50%. Surgery is usually a final resort option, something which he reiterated. He clearly also said he wouldn't say "no" to surgery in my case, except that it all comes down to how I feel.

I am not bedridden, but often housebound. My symptoms and energy levels fluctuate a lot. I am in sufficiently good form to exercise for instance. However, depending on the intensity of the exertion, I pay a bill the following day (my back hurts... a lot). Anaerobic exercise suits me best. Without my stretching class, I wouldn't sleep or replenish well, at all. That's mostly the gist of it.

He very clearly showed me the extent of my weak ligaments (from C0-C3, my cervical discs rotate in an 'abnormal' or unusual way which he calls subluxation). He mentions that most women come in during their 20-30s because muscles are not "dense" (I guess?) He mentions men come in during their 40s when they "get desperate" (to quote his assistant, a woman who takes great involvement in his work). These are in my opinion reliable people, it just doesn't stop there, and what we as people suffer symptomatically should be heavily weighed relative to other areas which neurosurgery has less involvement in.

Energy, molecular systems, metabolics, etc. All this has not to do directly with "mechanics" and connective tissue (i.e. ligaments) they are adjacent and sometimes intersectional things. Couple more key questions -- I asked him whether Chronic Fatigue (in his opinion) comes first or CCI/AAI. He responds that based on the subset of patients he has seen which complain about both, they later develop CCI/AAI after getting ME/CFS. I also asked if viral / infectious agents are known to cause CCI/AAI (versus a priori just genetics -- this applies to most of his patients who have hyperflexible joints or EDS, versus also traumatic or accidental in nature). He doesn't know if viral agents cause CCI/AAI.

Considering though, that my pain in my hip joints and upper cervical got progressively and noticeably much worse after getting ill with mono, I think that's what I plan on looking at next in understanding what the hell is going on and what else I can do to help myself.
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The above goes over what was mostly mechanically wrong (CCI/AAI).

I just want to add a couple more things. Dr Gilete explained that usually the neurological symptoms associated with CCI/AAI get worse over time. Some of these include: fatigue, migraines, nausea, blurred vision, muscle weakness, slowed digestive processes. Others: urinary changes (urinary urgency). Probably also: sexual dysfunction and/or 'vasodilation'. I use the latter word to describe any phenomenon where vascular dilation effects a dysfunction, like excessive sweating, orthostatic intolerance when standing up, fainting, heat intolerance (or temperature regulation).

AAI/CCI is involved with brain stem compression. When you have cervical discs / weak ligaments compressing areas of the brain, you get some kind of disregulation. In my case, it seems that there is some compression on the autonomic nervous system. This then probably explains all the symptoms above. I guess you can also say that the symptoms mimic dysautonomia -- maybe this is dysautonomia itself.

The concern I have with all of the above: surgery should not be the only viable way to improve (if we have any chance of improving).

Also: ME/CFS can offset CCI/AAI. Most of Dr Gilete's patients as mentioned before have EDS (a genetic variation where a person's joints are hyperflexible). I don't have EDS. What then is the correlation between ME/CFS and CCI/AAI?

Did I develop CCI/AAI in a traumatic accident? Or do I have a predisposition to ME/CFS, which has then offset my CCI/AAI? I believe in a predisposition to ME/CFS which has worsened my CCI/AAI.

Why do I think this? Because after I got sick during my first week in college (suspected EBV) a *whole lot* of symptoms came up. Many, numerous symptoms. I developed a diarrhea for *6 months* after my bout of mono. That was the time when I also developed joint/hip pain when I would walk too much. An important thing to mention here:
on my MRIs of the lower back, I have a degenerative disc (lack of cushioning in one of my discs, lack of connective tissue basically, which reflects the same kind of degeneration in AAI/CCI seen in my cervicals).

I really do believe that an infectious agent has drastically worsened my symptoms (and quality of life) in the very same way that we see in ME/CFS. This is compatible with ME/CFS.

I plan to look a bit more into immunology and metabolics (with the help of the ME/CFS roadmap that is available publicly on Google Documents). There is a lot to do about molecular biology which can't merely be understood by seeing a neurosurgeon who is absolutely specialized in one specific, mechanical offshoot of what we think originates in ME/CFS (in what at least *I think* originates in ME/CFS). Again, surgery is one last resort for CCI/AAI, but I'd like to further understand what is causing my ME/CFS as such.

If anyone can contribute any helpful guidelines and has had any similar experiences and questions, please feel free to respond, as it is always really important to share our stories / experiences.