Question to those with neck issues/CCI/AAI etc

[Sushi]

i see a local doc this week...i would like to ask for an MRI since i havent had one in over a decade. does anyone know what i should specifically ask for? should i say brain as usual or neck? or do they do both anyway?

It is more specific than this. The answer is in the thread, though it is long. Look for posts by @jeff_w -- or maybe he will see this and answer here.

Edited to add: I forgot to include the link. Here it is. https://forums.phoenixrising.me/ind...instability-cci-as-a-cause-of-your-cfs.56908/

 

[Rlman]

i read this story i came across about someone with cfs who improved after fixing his CCI
https://www.mechanicalbasis.org/

that website is telling jeff_w 's healing story. he made that website.

 

[Daffodil]

that website is telling jeff_w 's healing story. he made that website.

oh lol thanks for letting me know

i heard that the woman from the CFS movie had a similar surgery in NYC recently and is feeling better. she sees dr. kaufman i think. Apparently, dr. k. went to NYC to talk to the surgeon too....

 

[Daffodil]

i wonder if...i had some kind of problem before the ebv and the mono made the lymph nodes bigger...and they didnt shrink all the way back...so there wasnt enough room in that area....so the neck cramping started....?

@Sushi did you ever get the upright MRI?

 

[Sushi]

@Sushi did you ever get the upright MRI?

No, but then I don't have the relevant symptoms. Not sure that simply an upright MRI is what is needed diagnostically. Did you find the relevant posts? It would be a shame to get the wrong MRI.

 

[bjl218]

For those considering trying a neck traction device at home: My mother is a retired PT who says that some of the at-home traction devices are problematic mostly because it's difficult to use them correctly. Often the head and neck are not kept in the correct position. These are the devices that you hang from a door and fill a bag with water to the desired weight.

I showed her this one: https://neckhammock.com/products/the-neck-hammock

and she liked the design a lot better. So I ordered one, but I haven't had the chance to try it out yet.

I've noticed that a number of sites carry this device so Google around for the best price.

 

[Daffodil]

No, but then I don't have the relevant symptoms. Not sure that simply an upright MRI is what is needed diagnostically. Did you find the relevant posts? It would be a shame to get the wrong MRI.

yes i read it.thanks a lot for the link. it was very helpful

 

[Gingergrrl]

i read this story i came across about someone with cfs who improved after fixing his CCI https://www.mechanicalbasis.org/

That is Jeff's website that he created (but I think that you have already read it now and I am just catching up with a bunch of threads)!

For those considering trying a neck traction device at home: My mother is a retired PT who says that some of the at-home traction devices are problematic mostly because it's difficult to use them correctly. Often the head and neck are not kept in the correct position.

I totally agree with your mom and decided against trying any of the home-made traction devices. They are not precise and you don't really know how much weight is being used or if it is holding your head and neck in the correct position. I'm waiting for my MRI results (it took longer b/c they are being compared to my 2010 results). When I finally get them, I will show them to my new PT, who I start with on Fri, and see if he thinks getting a traction machine at home would be helpful for me. The manual cervical traction is very helpful but I am still not sure about the machine.

 

[Daffodil]

@Gingergrrl yea.... i saw my doc and he agreed to order the stand up MRI but there is no stand up MRI here. i would have to travel to Latham Albany and pay $800 or more. which I cannot do right now.

the neck pain was so bad at the start, then came and went through the years....now it isnt there much anymore. when i am especially sick, i feel something...in the back...around the brain stem. i wonder if its just lymph node swelling taking up room in there. i dont know. i would have to be more sure to go that far.

xoxo

 

[Wayne]

the neck pain was so bad at the start, then came and went through the years....

@Daffodil, you may want to check out THIS POST (very interesting) by Jeff_w on how the neck (and other vertabrae) can self-fuse over time.

 

[Daffodil]

@Daffodil, you may want to check out THIS POST (very interesting) by Jeff_w on how the neck (and other vertabrae) can self-fuse over time.

thanks wayne the whole story is blowing me away. at the moment i cannot afford an upright MRI and would have to travel quite far to get one. they have 2 machines in BC but none in Ontario. actually there is 1 here but not accessible - only for hip research. not sure if there is any point in getting a regular MRI since i have not had one in so long.

i keep reading that peopel with CCI have headaches but i do not....what do you make of this?

thanks
sue

 

[Wayne]

what do you make of this?

I've come to believe I almost certainly have some degree of CCI/AAI, but not necessarily a degree that would require surgery. I did float the prospect of getting a specialized MRI by my Osteopathic doctor today, and asked him if he'd be willing to look at some of the information that's being shared on these CCI/AAI threads. He said he would, so that's where things are at.

I'm currently feeling I should get the MRI done, so that I know whether I have it, and if so, the severity. I would probably explore options other than surgery if it wasn't extreme, such as prolotherapy, or PRP (Platelet Rich Plasma) injections, both of which are supposed to strengthen and heal ligaments. I'm in no hurry on doing this, but anticipate I'll get more focused after the first of the year.

I've mentioned in other posts I've long thought my ME/CFS began with a head injury/whiplash as a teenager, and that most of my health problems originated in my neck. So all this CCI/AAI information is very interesting to me.

 

[Daffodil]

so i was thinking....all these years...all the neck issues i have had. i cant even wear a ponytail for long periods because its too heavy for my neck. it hurts in the shower sometimes when my hair is wet because of the weight. and all the cramping i have had on and off....maybe there is something to this.

i cant believe there is no open/upright MRI machine in all of toronto. this is the worst province for healthcase, i swear. even the private clinics dont have one!

i would have to travel for hours by bus intp the USA and pay. But I might do it because now I am thinking there could be something there.

If they do find something, I am not sure what I will do because there is no way anyone would perform surgery here unless there were a miracle

 

[Rlman]

If they do find something, I am not sure what I will do because there is no way anyone would perform surgery here unless there were a miracle

yeah most ontarians and canadians who need such surgery go to the usa to do it and its expensive. many fundraise.

 

[Daffodil]

yeah most ontarians and canadians who need such surgery go to the usa to do it and its expensive. many fundraise.

but if the scan shows cci and we have head / neck symptoms, brain fog, and perhaps increased pressure on spinal tap, couldnt someone convince the govt to pay for it?

i dont know what to make of all this because my neck was horrible early in the disease but with treatments it got better. now it bothers me but not in the same way. i also dont get headaches. but my head just feels heavy somehow. and when my fog is worse, i feel something weird in my brain stem. it doesnt sound like cci but no way to tell for sure without testing i suppose

 

[gm286]

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.

 

[Inara]

@gm286, is it true that the OP costs around 60.000?

 

[gm286]

@gm286, is it true that the OP costs around 60.000?

Hey @Inara — weirdly enough, I actually never asked. I was too hung up on the mechanics, everything surrounding CCI, CFS etc and hearing anecdotes about his other patients to ask about the cost. There was so much going on outside of the cost, in my own head, while I was then and there.

 

[gbells]

I dont know if this applies to your case but on the BTM fb group 2 people commented about how traction from things like the neck pulling devices one can buy can actually induce cci or make it worse due to the stretching of ligaments. even a hard collar gives a bit of traction they said and can make things worse for some. so i guess if a person has severe CCI then traction helps but for people where its not too bad maybe it can make it worse?

If someone has instability they are already on thin ice regarding daily activities like getting your hair washed in a basin. These types of movements normally wouldn't have any affect on ligaments because they require too much force over time to change.

 

[Hip]

To those that have gone through the investigative process for neck and cranial issues, has anyone had neck traction make them worse?

@jeff_w said this:

I agree with this, and I’m somewhat concerned about people doing traction without first knowing their anatomy. It’s safer to consult a specialist neurosurgeon and get a baseline MRI before doing this. But I know that’s not always possible.

You just really don’t want to be stretching out those sensitive neural structures incorrectly. There’s a neurosurgical issue called “Tethered Cord,” and traction could worsen that, if you have it. That’s why I think it’s best to see a neurosurgeon, as the traction only picks up on limited issues, when you could potentially have more complexities. I’d just hate for you guys to get worse from experimenting with this.