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

[frozenborderline]

I'm a little surprised about what Dr. Bolognese said to @debored13...

My specialist was very, very specific about what I can and can not do and what the PT can and can't do...So I don't know what he told the PT but she does VERY gentle cranial traction with me lying on the table and she makes frequent adjustments based on how I feel; and my specialist told her she can do NOTHING other than that. With her doing manual traction I don't believe she would be able to gauge how many pounds of pressure she is using...vs. a machine that does the traction for you and you set the pressure.

My specialist said definitively - 20lbs of pressure for over the door traction and when I emailed him back that I increased it to 25lbs cause if felt so good he told me not to do that, to stay at 20lbs. 20 minutes a day, no more. He also emailed me links for 2 home cervical traction devices to choose from.

My specialist was also very clear that I should only wear my cervical collar (and he prescribed 2 different kinds for me to choose from) when I am upright (and I am almost never upright, most of every day is reclining in the recliner or bed - other than weekly PT/Monthly labs/MD appointments). Also that I should never wear it more than 4 hours a day (again, no danger there as I am never upright that long...longest has been 2 hours, for PT, lab, and a store where I sat in the car and waited till my husband did a quick trip).

So maybe Dr. B was saying for manual cranial therapy the pounds of pressure aren't relative?

What over the door traction do u have

 

[StarChild56]

I am confused too. Unfortunately he is not communicating directly with my specialist who I’ve had issues with. Maybe communicating w me is low on his priority list. He didn’t tell me to do over the door traction and nobody told me to go easy on the collar. Pretty sure my neck is now much more atrophied. The pt guy can come to do home visits I just wish I had more info from bolognese to work with now

I am sorry, that is unfortunate

I am glad the PT can do home visits! That is awesome. If it were me, I would just have the PT do very gentle manual cervical therapy, maybe start with 10 or 15 minutes and see how you respond and adjust from there.

I wish you had more info from Dr. B, too - but I can understand that since he is not your treating physician / you are not a patient of his (with first visit and all that) that he may be limited in what he is willing to say or do...

I don't know how my specialist came up with the things he has ordered, I kind of assumed that Dr. B had something to do with it...but they obviously have a somewhat close working relationship since the day I brought my specialist my MRI CD he already had a meeting either that night or the next day with Dr. B and decided to bring it to him for review. Perhaps that facilitates a better dialogue as to general instructions for patients who are headed to Dr. B for surgery.

Idk, I'm sorry if I am not making sense and really sorry you are coming up against all of these obstacles. The last thing you need when you feel so awful.

Keeping my fingers crossed for you.

 

[StarChild56]

What over the door traction do u have

If you give me a few minutes, I can go to my Amazon to find it...but I have a few cautions:

1) it is from another country with no instructions
2) I brought it to my PT and she figured it out, and set me up - it goes over the door and I sat in a chair - she showed one of my adult kids how to set it up (there is no way I could set it up - you have to sort of tighten it over the top of the door and my arms are so weak no way could I - and I am short would have to use a step ladder and that would be unsafe for me, too.
3) the measurement for how much pressure is not in U.S. lbs - I do not know what measurement it is. My PT had to get a 20 lb weight and put it in the sling that your head goes into, to see where 20 lbs registered on this traction unit's unit of measure (which ended up being - "5" - 5 what, no idea). But it is awkward to do as the thing that holds your head is not very big so it is not easy to find a weight that is 20lbs and fits in the thing to accurately figure out where to set the pressure. Gosh I hope this makes sense because that's the best I got!
4) I loved it the first number of times but then had a horrible reaction - was instantly dizzy and nauseous so had my son take me off after a few minutes. The intense dizziness subsided immediately, the nausea a little slower.
5) My PT believes it is positional; she notices with tiny shifts of her fingers/hands results in weird things (had weird icy numbness, more pain, etc.). So since we do not leave the traction unit up, my son takes it down, puts it back up - even a slight difference can make a big deal of difference for me.
6) It held my jaw so tightly and my teeth don't line up well (overbite?) - the pressure started to hurt and make my jaw tremble and could not get my teeth comfortable. My son reminded me I have a night guard (which I should but don't wear) - and when I wore it, it helped and I was comfortable.
7) I emailed my specialist and told him I stopped the over the door traction he has not responded yet (I know he is tremendously busy)
8) I am going to try it again, and my PT suggested we put a 20lb weight in it to make sure it doesn't need to be recalibrated (and that that might have made me have the bad experience).

Okay off to search for the unit

 

[StarChild56]

@debored13 - here is the traction unit (another issue for me, is that you have to pull the string to get to the desired pounds of pressure - I can't do that for myself, so my son or husband has to do it every time)

https://smile.amazon.com/gp/product/B071L1KVMW/ref=ppx_yo_dt_b_asin_title_o05__o00_s00?ie=UTF8&psc=1

 

[StarChild56]

I need to be careful weaning off the collar I think. I had been sleeping in it Bc possible breathing issues

Yes, I agree you should be careful. I'm sorry...
I know we all have people suggesting all sorts of things and it can be annoying so I apologize if you already have tried lots of things. I was wondering if a wedge pillow to sleep on which would keep you at an angle would help? It may make things worse, though - it would for me - because the more flat I am, the less the CCI bothers me (however, that may be compounded a lot by my most certain CSF leaks)

 

[frozenborderline]

Yes, I agree you should be careful. I'm sorry...
I know we all have people suggesting all sorts of things and it can be annoying so I apologize if you already have tried lots of things. I was wondering if a wedge pillow to sleep on which would keep you at an angle would help? It may make things worse, though - it would for me - because the more flat I am, the less the CCI bothers me (however, that may be compounded a lot by my most certain CSF leaks)

Well when I first managed to sleep w the collar on I woke up without a headache /dizziness for the first time in awhile. I normally sleep on my stomach. It’s difficult

 

[frozenborderline]

I am sorry, that is unfortunate

I am glad the PT can do home visits! That is awesome. If it were me, I would just have the PT do very gentle manual cervical therapy, maybe start with 10 or 15 minutes and see how you respond and adjust from there.

I wish you had more info from Dr. B, too - but I can understand that since he is not your treating physician / you are not a patient of his (with first visit and all that) that he may be limited in what he is willing to say or do...

I don't know how my specialist came up with the things he has ordered, I kind of assumed that Dr. B had something to do with it...but they obviously have a somewhat close working relationship since the day I brought my specialist my MRI CD he already had a meeting either that night or the next day with Dr. B and decided to bring it to him for review. Perhaps that facilitates a better dialogue as to general instructions for patients who are headed to Dr. B for surgery.

Idk, I'm sorry if I am not making sense and really sorry you are coming up against all of these obstacles. The last thing you need when you feel so awful.

Keeping my fingers crossed for you.

Pt can do home visits but not covered by insurance, he’s a nice guy tho so may not charge that much and we may be able to do reimbursement

 

[StarChild56]

Pt can do home visits but not covered by insurance, he’s a nice guy tho so may not charge that much and we may be able to do reimbursement

Oh I really hope so! That is good that he is a nice guy. Cause we shouldn't and can't be subjected to those who aren't.

 

[leokitten]

Has everyone who’s been found positive so far for CCI/AAI, Chiari, stenosis have severe ME?

 

[mattie]

Has everyone who’s been found positive so far for CCI/AAI, Chiari, stenosis have severe ME?

Good question. We should index severity too.
I have severe ME.

 

[StarChild56]

Has everyone who’s been found positive so far for CCI/AAI, Chiari, stenosis have severe ME?

Severe ME/CFIDS here.

 

[frozenborderline]

So I had another appointment w the PT, this time solely traction. I was supposed to measure my response during and after.

My neck muscles are very weak/atrophied from wearing a collar and I felt that during some of the traction we were doing a slight flexion which was making me sore. I noted this to the PT and he adjusted. During some of the lower amounts of force I didn’t really notice it and/or felt a little uncomfortable Bc slightly in flexion. We worked up to between 15/20 pounds (estimate obviously) and i felt a significant sense of relief from this. I felt relief that was like deep muscle relief but also some kind of sense of being more grounded cognitively (sounds vague but I almost mean like when you have more blood flow to your head and you feel very “there”). In the fifteen minutes after the full traction session I felt more energetic and was able to be upright (with a collar, but still) without usual discomfort and was more energetic than before the session.

I felt that this was notable, but it was sort of muddied by the fact that now, a couple hours after the session, I feel if anything worse than before the session. It could just be that I tend to be a lot worse later in the day, but I’m worried that this response to it will negatively affect diagnosis. I do think that my strong reaction in the moment and right after to strong traction is a good indicator, along with my scans, for CCI. Perhaps we simply did too long of a session (it was an hour long) and accidentally put me into slight flexion, wearing my neck muscles out. Or perhaps there’s sometimes a “hangover” from strong traction where your lax ligaments become stretched and even more lax?

I do feel the need to note, when I consult with bolognese , that a lot of The neurological symptoms, like vertigo when sitting up, are alleviated when in a hard collar

 

[StarChild56]

Perhaps we simply did too long of a session (it was an hour long) and accidentally put me into slight flexion, wearing my neck muscles out. Or perhaps there’s sometimes a “hangover” from strong traction where your lax ligaments become stretched and even more lax?

My PT kept making slight changes with her hand placement, fingers, my head always had to be not bent forward in the least...pressure, etc. And we found my best time was only 10 to 15 minutes, not 30 minutes of manual traction. Usually later in the day I would have more soreness in my neck/shoulder. Sometimes on the place where neck meets skull. Doing the longer sessions resulted in more of that type of thing and less good results lasting longer. Very bad brain fog so hope it was clear. Tiny changes in pressure/finger/hand placement made all the difference. I felt like the pressure was relieved from my head to the bottom of my tailbone.

 

[frozenborderline]

My PT kept making slight changes with her hand placement, fingers, my head always had to be not bent forward in the least...pressure, etc. And we found my best time was only 10 to 15 minutes, not 30 minutes of manual traction. Usually later in the day I would have more soreness in my neck/shoulder. Sometimes on the place where neck meets skull. Doing the longer sessions resulted in more of that type of thing and less good results lasting longer. Very bad brain fog so hope it was clear. Tiny changes in pressure/finger/hand placement made all the difference. I felt like the pressure was relieved from my head to the bottom of my tailbone.

This is reassuring to hear. Yes I’m kind of having soreness of that same area about an hour or two after the session. The pt is very responsive so if I wanted to work up to more force earlier in the session and also do less flexion he would take that into account. When you say 15/30 minutes do you mean the total time in traction or total session length ? We did lots of breaks in between traction so my actual time in traction wasn’t an hour but still felt like a long session especially since I was in a small amount of flexion throughout.

I had trouble speaking Bc so tired at the beginning of the session and was sitting upright and talking with more force and energy by the end, my sister said I sounded/seemed more energetic.

 

[StarChild56]

hen you say 15/30 minutes do you mean the total time in traction or total session length ? We did lots of breaks in between traction so my actual time in traction wasn’t an hour but still felt like a long session especially since I was in a small amount of flexion throughout.

Never straight, no - little breaks along the way. Although I think we did do maybe 10 minutes once with no breaks - but this was after many sessions and she found the right groove so to speak. So 10 to 15 minutes with breaks in between. The 30 minutes with breaks was just far too long for me.

 

[StarChild56]

This is reassuring to hear.

I am glad, I had hoped so.

 

[StarChild56]

Also in the beginning, @debored13 it sometimes seemed like it triggered a migraine sometimes (even though it decreased them dramatically). After we shortened it more, and she did more adjustments with her finger placement (like some placement hurt those two bony parts top neck where meets skull on each side, left and righ) - would make that SO sore - then it seemed not to trigger them. And it wasn't every time.

 

[Rufous McKinney]

Their pioneering research has been very promising.

So I'm old enough to remember an episode of 20/20, late 1990s (?) where a doctor was treating CFS and Fibro by opening up the neck vertebrae. This sounds like this very thing. A core symptom for me is: this horrible swollen feeling in the base of my neck/skull, and from there radiates: much of the problem. I've imagined this having some significance for many years now.

 

[Belbyr]

I wanted to report that I was checked out today by a guy that specializes in these neck disorders. (Also works with soldiers that have been blown up). He looked through all of my records, checked all my symptoms, did about a 30 minutes exam on neck and spine and was going to take a look at my MRI's from Mayo Clinic.

My atlas was subluxed to the side a little but it fell right back in place with minor manipulation. We discussed how I have a headache and a lot of muscle pain/tension in the area. He felt it was illness driven and not from a physical abnormality. Overall the Dr. spent about 45 minutes with me, was very nice, and really felt for me and my condition. We do not think my illness is being driven by the neck/head region. He said we could try some vestibular therapy if my doctors at NOVA come up empty handed on all my blood work that takes a month to get back.

He is very aware that some of this stuff can have abdominal problems with it (which is my worst) and how some of the nerves, particularly the vagus nerve can be affected. I'll be on standby until I get all this blood work back, but I do not think I will be getting any knives out to fix my issue any time soon...

 

[Rufous McKinney]

Well, so that sounds good: major surgery does not sound fun. But to wake up cured: now that does sound fun.