Minimal Resources, Waning Cognition - Where do I Start My CCI or Cervical Spine Journey?

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A combination of distrust of doctors (avoid medical appointments but for once a year), life circumstances, and 26 years of moderate-severe ME (I'm only 63!) has me overwhelmed, now that I'm finally looking into CCI & similar. My symptoms are getting worse over the past year, especially the past few months - neck, head & eye pressure, disorientation, dizziness, worst 'fatigue' since onset. I think I most recently exacerbated by re-attempting a few of the PT stretches I was put through 2 years ago for neck pain. Generally, ME & life circumstances have left me too exhausted to even go to the doctor right now (ugh!)

So, a few questions are all I can start with. If anyone can answer briefly (I can't read much either, BTW), I'm very grateful in advance!:

1) My fairly ME-aware GP of 20+ years just moved on, I'm starting with a nurse practitioner.
Can she order my MRI? (I feel as though SOMEthing should be investigated, considering the symptoms & debility.)

2) I have few resources. Travel is out of the question. I live in western PA and can travel to Pittsburgh and surrounding areas. Anyone know of any Pittsburgh area Neuros or Orthos that are CCI etc. aware?

3) I know of a fairly descent neurosurgeon (did work on my husband's lumbar issues). Will he know about CCI or do I have to educate him?

Cognitively, that's all I can ask for now. Please forgive if I don't reply or my replies are slow. (Sorry also - I'm usually the cheerful jokester, but not today.):xeyes:

(P.S. I don't do Facebook or other social media for overload reasons.)
 

Judee

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(Here is the >> LINK << she provided with a picture of the device. I think I also saw them on Amazon.com but I don't remember the price.)
I just tried to order this collar...but its messed up or something, and instead under ordering, its the pads and not the collar...I managed to cancel my order- (which caused some panic as I could not find a cancel button).

anyway, there must be some other way to locate the actual collar and the whole thing left me confused. Oh yay.
 
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3) I know of a fairly descent neurosurgeon (did work on my husband's lumbar issues). Will he know about CCI or do I have to educate him?
I could be wrong, but this CCI surgical repair seems to be a procedure very few doctors can perform. I think we were told four surgeons do it- on the entire planet.

And if you haven't been evaluated, any number of neck issues may be a play- not just CCI...

There is prolotherapy at places like this Florida Neck place...something likely experimental and not covered by insurance...(Dr. Hauser has You Tube videos about the neck, CCI and related issues you might want to watch some of those)
 
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I seem to have found a "short" neck collar- online- not on EBAY...the EBAY link I think is not allowing you to buy the collar: this one about $137....

https://www.alimed.com/aspen-collar...xvuPkWh0rSV-5zcJyoimTqGhIe-jtvFcaAlvMEALw_wcB

this is an adult, why do they show a child wearing it?

I'd like to get one: but will hate wearing it: I'll look truly awful. My flabby jowels (my skin never recovered from losing 45 or more pounds so I always look awful...)

And I'm getting fed up with ordering things online and they don't fit, or are wrong.....
 
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I just tried but instead it wants to send me replacement pads. not the collar.....
Hi Rufous,

I ordered mine from Amazon - $53.80.
Aspen Vista Cervical Collar 2-Piece Rigid Neck Brace for Restricting Cervical Motion, 984000

I believe it's the entire device, based on the description. I can let you know - mine is supposed to arrive Thursday 10/20.

It's adjustable, so I'm hoping it fits. (I'm small-ish.) I'm sure it won't be very flattering on me either, but after 26 years of ME and battered by this brain problem, I'm past the age of "I don't care." :D
 
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I could be wrong, but this CCI surgical repair seems to be a procedure very few doctors can perform. I think we were told four surgeons do it- on the entire planet.

And if you haven't been evaluated, any number of neck issues may be a play- not just CCI...

There is prolotherapy at places like this Florida Neck place...something likely experimental and not covered by insurance...(Dr. Hauser has You Tube videos about the neck, CCI and related issues you might want to watch some of those)
Thanks for the tips - this helps. Yeah, I found a bunch of this info in recent days and just got overwhelmed. I peeked on the Forum here figuring you guys keeping up on this subject could offer some guidance through the 'weeds'.

I like the Centino guy's videos - haven't caught many of Hauser's yet but hope to. (Hurts my brain to watch.) I can't imagine having any of these therapies done. (Not a fan of Big Pharma.) I'd most definitely avoid the big surgeries, all the complications and such.

I don't even know what's going on in my spine and brain yet, but I'm guessing at this point I have to leave it up to the locals that take Medicare.

Thanks again, Rufous!
 

lenora

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If you live near Pittsburgh there are some excellent teaching hospitals in the city. I had a precursor to today's surgery (I have three separate neurological illnesses in addition to ME/FM).

Make a LOT of phone calls and always get the no. of someone new. It's very hard to find these people, but they do exist. This is going to take effort on your part, I know, and I'm sorry....still you want someone who knows exactly what they're doing.

The young man who discovered CCI in himself set up a business to help others. His name Jeff ? I forget who he's an adviser to now....a wild guess (remembrance?) the NIH. I'm sure someone has some info on him. Also, Jennifer Brea had that surgery and really, I don't know how she's presently doing. Better I hope.

I know it helped me probably 35 years ago, but it took the surgeon a long time to perfect it. Things have become easier since that time, but the surgery did stabilize the situation although I think that's over at this point. I'm too old and have too many other problems for most neurosurgeons to touch me....besides, I don't have the energy. By the way, that was better but the lack of it never disappeared. The younger you are, the better (& yes, 40's and 50's) are still young. Most won't operate if they don't think it will help....at least that's what I found.

Make those calls, ask direct questions about MRI's and other tests....and have them done at the hospital since "pictures" that aren't clear will have to be done again. Teaching hospitals have the most up-to-date equipment around.

A super early appt. (I think we were seen at 5:00 a.m.) will save you waiting in a room all day to see the specialist. They're slow and careful and have incredibly long hours. The best neuros I've seen almost always have standing room only. Early morning appointments will save you from that effort (which is exhausting). We quickly learned....go first. Yours, Lenora
 
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It's adjustable, so I'm hoping it fits. (I'm small-ish.)
let me know how its fitting you...I have a small neck too,....(no way do I look like that model woman)...

I'm all undiagnosed neck stuff, too. Dunno if I'll ever achieve an MRI that would reveal what's going on...I am a list of spinal problems, genetic birth defects- driving some of it..

I sort of want the collar for if I go out driving around..on rough roads where my daughter lives . I have no idea if it would help, if I'll ever really wear it: again I'll look so very awful.

And how do I use it- to NOT have weaker neck muscles. My neck is just bizarre (severe ligament laxity on one side)(because the right side of my body is much sicker than the left, I have many right side symptoms).

Who can explain these problems? I have "wind" pouring out of my neck. (pop pop pop rocks boulders and gravel for hours and hours). My head is gonna fall off one day. I never see obituaries describing that.
 
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let me know how its fitting you...I have a small neck too,....(no way do I look like that model woman)...
I received the Aspen collar. It takes a little learning curve to get it to fit & adjust, but so far it is comfortable and fits my small neck. (I'm 5'6" 118 lbs.) I'm sure I'll have to make adjustments as the days go by too. It allows for air flow around the neck, which is good.

I don't think I'll wear it non-stop for a couple weeks though. I'm concerned about muscle atrophy in those neck-stabilizing muscles.
 
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If you live near Pittsburgh there are some excellent teaching hospitals in the city. I had a precursor to today's surgery (I have three separate neurological illnesses in addition to ME/FM).

Make a LOT of phone calls and always get the no. of someone new. It's very hard to find these people, but they do exist. This is going to take effort on your part, I know, and I'm sorry....still you want someone who knows exactly what they're doing.

The young man who discovered CCI in himself set up a business to help others. His name Jeff ? I forget who he's an adviser to now....a wild guess (remembrance?) the NIH. I'm sure someone has some info on him. Also, Jennifer Brea had that surgery and really, I don't know how she's presently doing. Better I hope.

I know it helped me probably 35 years ago, but it took the surgeon a long time to perfect it. Things have become easier since that time, but the surgery did stabilize the situation although I think that's over at this point. I'm too old and have too many other problems for most neurosurgeons to touch me....besides, I don't have the energy. By the way, that was better but the lack of it never disappeared. The younger you are, the better (& yes, 40's and 50's) are still young. Most won't operate if they don't think it will help....at least that's what I found.

Make those calls, ask direct questions about MRI's and other tests....and have them done at the hospital since "pictures" that aren't clear will have to be done again. Teaching hospitals have the most up-to-date equipment around.

A super early appt. (I think we were seen at 5:00 a.m.) will save you waiting in a room all day to see the specialist. They're slow and careful and have incredibly long hours. The best neuros I've seen almost always have standing room only. Early morning appointments will save you from that effort (which is exhausting). We quickly learned....go first. Yours, Lenora
Thank you for the tips Lenora.

I'm slowly checking with family & friends who have worked for UPMC in Pittsburgh. It's the health "scare" system I have the most problems with. I saw Jeff...Wood's(?) consulting biz, but I'd have to be a charity case! (His story is horrifying - which is why I've avoided the gauntlet of our US for-profit medical industry as much as possible for decades!)
 
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Hi @hikinglo ....

Am tagging in @Jyoti, who knows something about all this, while I know very little .....

I hear you about Drs ... I've assiduously avoided them since slowly pulling out of 5-plus years of totally bedbound and vegetative (for any practical purpose), and have managed to cobble together enough info to pull myself into better, if hardly optimal shape .... so I can assure you that you're totally in the right place ....

Good luck with your search for answers :thumbsup::thumbsup::thumbsup: :):) !!!!
 
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Hi @hikinglo ....

Am tagging in @Jyoti, who knows something about all this, while I know very little .....

I hear you about Drs ... I've assiduously avoided them since slowly pulling out of 5-plus years of totally bedbound and vegetative (for any practical purpose), and have managed to cobble together enough info to pull myself into better, if hardly optimal shape .... so I can assure you that you're totally in the right place ....

Good luck with your search for answers :thumbsup::thumbsup::thumbsup: :):) !!!!
Thanks for the encouragement YippeeKi YOW !! I've had zero encouragement and little support with investigating my own health issues. (I'm declining from chronic PEM after taking care of everyone else's health issues. To the point I can only process info at a snail's pace.:sluggish:)
 
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To the point I can only process info at a snail's pace.:sluggish:
Completely understand, and full empathy.

It's one of the more frustrating aspects of this crappy little ass-kicker of an illness .... it manages to take away exactly what we need to move forward ....

Dont give up !!! It took me many months to get even a minor handle on what I might need to do to progress a bit, because sometimes just connecting the words I was reading to an actual thought process was ..... difficult ....

I learned to do little bits at a time, and to take quick short notes on a word doc, which allowed me to review what Id read the day before in a condensed version. Very helpful !!! I'm not sure I would have made it without that shortcut ....
 

Jyoti

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@hikinglo --I am sorry you are dealing with these spinal issues. There are tons of resources out there and I will try to offer up a few.
As to the collar--I have been advised to have it fitted by someone who knows what they are doing--a PT with CCI-relevant training or doctor --to be sure it is not doing more harm than good. If you can't manage that (which I know can be difficult) then you will do your best to get it fitted so that it feels helpful. I have also seen it pretty universally suggested that such a collar should not be worn for more than 4 hours per day.

I'm tagging @Wayne here as he has a lot of upper cervical chiropractic experience and may have information that will be useful for you. Obviously, you need to be quite cautious with putting your neck in the hands of anyone who might move it around--make sure they understand CCI and AAI and are aware of the dangers of over-extending (or flexing) your neck.

(I saw an Atlas Orthogonal chiropractor a few times and had absolutely phenomenal results the first time--my life back! For four hours. The following sessions were of diminishing value. But from there, I found a PT (and they also can diagnose CCI, though a neurosurgeon probably wouldn't run such a diagnosis!) who confirmed CCI through provocation tests and got me a traction device (this is one that lies on the floor, not a door-hanger) and it helped me a great deal. A great deal. So there are some non-surgical avenues in addition to or perhaps to be explored before Regenexx and certainly before surgery.

I see that you have already absorbed Jeff Wood's story and wisdom.

I understand about Facebook and resisted it myself for ....years, actually. But I have to admit--that is where the info is being exchanged and while I still can only take in a fraction of what is available there (a number of groups like ME Brain and Spine) I am slowly aggregating more details and specifics.

I assume you have begun to mine the threads here at PR? https://forums.phoenixrising.me/forums/connective-tissue-disorders-collagen-eds-cci.123/ There is a lot to be learned and again....it takes a while to absorb all the information so go at a pace you can manage. Because this is such a newly recognized phenomenon in our illness, things change as well. The doctors working with it are learning more all the time.

As far as I know, there are three doctors in the US doing surgery: Patel (SC), Henderson (MD) and Bolognese (NY). There may be a couple of new ones since I last looked, but one of the things that these doctors (and possibly others in their practices) can do is diagnose CCI, AAI, tethered cord, etc.

I finally went to Henderson for a diagnosis. I did not get surgery but I could find no one in the SF Bay area (which has a preponderance of high quality doctors) who could/would read the MRIs I had done in search of the specifics which might identify my problem. Bolognese, I know, has (and probably still does) offer Zoom consultations to look at imaging (he wants Tesla 3 supine cervical MRI ) and give you his take.

Although I could not find a neurologist in my area who considered themselves qualified to accurately read the MRIs, I did find one who was willing to order them, knowing that I was going to an expert to have them read. That might be something your husband's neurosurgeon would be willing to do. You might still have to educate him! If your NP will order them...that is great. My GP flat out refused--I think most doctors have been taught that CCI is a condition associated with a couple of conditions (EDS and Downs) and if you have not been diagnosed with one or the other, it doesn't make sense to them to order such an expensive test.

Best luck, and ask anything specific that comes to mind. There are a lot of people here who know more than I do about cervical spine issues and who have, for instance, tried Regenexx. It is a lot to learn, but there is potentially a lot to be gained.
 
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I received the Aspen collar. It takes a little learning curve to get it to fit & adjust, but so far it is comfortable and fits my small neck. (I'm 5'6" 118 lbs.)
Sounds like its fitting! I'm about 5-4 or 5-5 ...but a bit heavier...like I turn into a turtle in a turtle neck......


I don't think I'll wear it non-stop for a couple weeks though. I'm concerned about muscle atrophy in those neck-stabilizing muscles.
yes, this seems like the tricky part- how and when to deploy, without further weakening muscles that are doing some work now.

Maybe I need it later in the evening when I seem to get more tired holding up my head (but if I lie down I'd fall asleep)