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

[StarChild56]

It worries me that bolognese May think of me as a borderline case b/c I think normally he would just ask for traction once? Not sure.

My specialist ordered 12 PT visits, presumably what Dr. B required. And it looks pretty certain I will have the surgeries unless something drastic changes. I already have my consult with Dr. B scheduled (soon).

 

[rel8ted]

Hi everyone. So like I said in other thread , I’ve been told that if bolognese doesn’t see anything, he says “we can’t help you” and if he does see something, he has you do traction for diagnostic purposes before he sees you. This is proving to be a big hurdle. I live in a very rural area and it’s hard to go out at all. There are no home pts here and the one pt recommended to deal with cci specifically is booked until March. Bolognese wants me to do traction six times before getting back to him. Going out once would already be tricky. Going out six times way moreso. Also no guarantee the pt will even want to do traction. Not sure that my doctor wrote the order specifically for that (he doesn’t understand this cci thing) and the pt isn’t just going to do traction because I ask, yet bolognese won’t write the order directly. I wonder if I can just show bolognese email to the Pt or to my doctor. Or if he can talk to my doctor directly. I feel that wearing the collar all the time has weakened my neck, but it’s extra hard to recondition with PEM. I certainly think the collar has been helpful but I originally thought this process could be faster than it has been and that the collar would be a temporary measure to hold me together for a month tops. Now it’s been two months. And I’m not close to diagnosis or treatment.

It worries me that bolognese May think of me as a borderline case b/c I think normally he would just ask for traction once? Not sure.

If the email from Dr. B included instructions for the PT, I would think your primary could write the order. You need a primary that is willing to coordinate for you. I have an out-of-state ME specialist & have to coordinate some care through my primary. The PT has got to know what specific method they are supposed to be doing! I can totally relate to the lack of provides in rural areas. Even though we are within 30 minutes of the nearest city, we still have a lack of providers. It is not uncommon for people around here to trek 75 or more miles for a competent specialist if they have anything unusual.

 

[wigglethemouse]

Aside from this one paper from 2018, as far as I am aware, the relationship between ME/CFS and neurosurgical issues had never been noticed or formally studied -- let alone tracked like this.

Thus far, no articles have been published about CCI/AAI fusion surgeries, which I had, as they relate to ME/CFS. So there have not yet been conference presentations about situations like mine, where an ME/CFS patient had CCI/AAI surgically corrected.

@jeff_w I was wondering if you & Dr. K would be interested in him writing and publishing a case report on you? Perhaps that is something worth exploring

The recent Charles Lapp diagnosis paper that also listed co-existing conditions got me thinking that it would be great if ME doctors could write case studies to get the word out to other doctors about things that are measurable and treatable? He does seem very interested and involved in research attending conferences and being part of the OMF working group.........

 

[dreampop]

It worries me that bolognese May think of me as a borderline case b/c I think normally he would just ask for traction once? Not sure.

What I would do in the situation, which may be very different given how you feel and what your needs are, is grab the March appointment. Then, I would print the e-mail from Dr. B and find instructions online for how the traction needs to be done and bring those to the PT. Then I would say, look, this is the therapy my neurosurgeon wants do, emphasize his credentials, and this is reference material for how to do it. If you can have a family member articulate this clearly and drive you etc. but you seem pretty lucid in writing but I am too and sometimes struggle when active. This way you just need your GP for the referral.

PTs I have seen have been pretty understanding and flexible, but that's not always the case. I would be polite and concise about it, acknowledge it's uncommon so your brought just to be thorough, etc.. but it's important it's done correctly.

 

[frozenborderline]

@ashleyO this is another thread you may want to look at

 

[frozenborderline]

One thing that people with this diagnosis may want to consider for relief is an inversion table. The only issues I have had is finding a way to invert that doesn’t put too much pressure on my ankles or hip where the harness fits

 

[ashleyO]

does anyone have advice of how to convince a doctor to order CCI imaging for you? my current PCP told me he would not order the MRI for me in spite of my showing him @jeff_w 's website. also is an upright MRI of the cervical spine and skull with rotation, flexion, and extension the best imaging to determine if one has CCI?

the reason i think i may have it are mainly the following symptoms: i have trouble lifting/raising my head up and it makes sitting upright and standing very difficult, my neck always feels to be drooping; i have chronic vertigo, dizziness, and a sense of confusion/disorientation; i get close to blacking out frequently which seems to correspond to movements of my head; i have elevated heart rate from sitting or standing and even sometimes while laying down, seemingly at random; i have trouble breathing and heaviness in my chest; i have severe nerve pain, weakness, and discomfort in the back of my neck/upper spine. also, a few years ago on a CT scan it was found that i have tarlov cysts (ruled benign but i wonder if there is an association).

i am absolutely open to seeing another PCP in my area (los angeles CA) but have no idea where to start. i am seeing a rheumatologist in a couple weeks and wonder if he could possibly order the MRI for me? should i bother to ask? and is there a way to try to get insurance to cover it? i'm worried that, even if a supine MRI is more easily covered, it would not show the presence of CCI as easily. i appreciate any advice anyone has to offer, thank you!

 

[gm286]

Hey there @ashleyO, and everyone else.

I'm glad that this thread is still active. About what I had to do for my Upright MRI. There was no getting around the cost for me. I am a Canadian who lives in France on long-stay visa (2 years). Not covered by insurance. The private insurance I had to purchase to live here would not cover this sort of thing under their policy.

CCI is considered to be a long term issue with deterioration of ligaments in the cervical area. They are supposed to keep your neck strong and bear the weight of your head.

About finances. The Upright MRI was not available in France. I had to pay almost 1000 pounds out of pocket for the scan if I remember correctly. Some of that money was because I elected to have a scan of the lower back as well, as I have had lower back issues for ten years and there was evidence of a collagen/cushioning problem there too.

I then had to pay another hefty sum of money (no less than 500EUR) to see the neurosurgeon specialist in Barcelona. The scans were forwarded to him. The face-to-face consult alone was 300EUR. You basically pay 300EUR to have a neurosurgeon tell you there is nothing that can be done or that has proven to help CCI other than surgery, which I find questionable. In large part this is questionable because of the financial component.

You really need to go out of your way to get a CCI diagnosis. I don't know if this might help you being as you're in the States, but I know that I payed about 200EUR or so to get an official, signed diagnosis of CCI. If one day I return to Canada, I think this might help me get a tax cut for disability. I know that this point is relevant for some of us who look into financial stuff and who do not live in horrendous parts of the world where social assistance does not even exist.

--

A word about the collagen/ligament issue in CCI @mattie @debored13 @Hip

I watched the entire Stanford symposium yesterday and saw that they did briefly address the CCI/Ehler Danlos Syndrome overlap with CFS patients. It came up as a question from someone in the audience which was addressed in part 1 or 2 of the Q&A videos (OMF has these videos up on Youtube).

The question was directed at one of the panel members (a Chinese statistician) who works on studies being conducted at Harvard as well as Stanford for CFS. He confirms that the overlap is consistent with the fact that there is a collagen production issue in patients with CFS based on some of his research/tests.

I can't quite recall if he goes into a lot of detail in his stand-alone presentation (will re-watch) but I recommend you guys check it out if you are extra curious.

Wenzhong Xiao, PhD | Results from the Severely Ill Patient Study (SIPS) (Youtube video)
Q&A Panel Discussion 1 posted by Open Medicine Foundation (OMF)

 

[mattie]

I can't quite recall if he goes into a lot of detail in his stand-alone presentation (will re-watch) but I recommend you guys check it out if you are extra curious.

Thanks; interesting indeed. The question is asked in below video at the 25:12 mark.

 

[StarChild56]

even if a supine MRI is more easily covered, it would not show the presence of CCI as easily.

My specialist ordered a supine MRI with particular views and that is what Dr. Bolognese prefers, and it is how I was diagnosed with CCI/AAI

 

[sunshine44]

does anyone have advice of how to convince a doctor to order CCI imaging for you? my current PCP told me he would not order the MRI for me in spite of my showing him @jeff_w 's website. also is an upright MRI of the cervical spine and skull with rotation, flexion, and extension the best imaging to determine if one has CCI?

the reason i think i may have it are mainly the following symptoms: i have trouble lifting/raising my head up and it makes sitting upright and standing very difficult, my neck always feels to be drooping; i have chronic vertigo, dizziness, and a sense of confusion/disorientation; i get close to blacking out frequently which seems to correspond to movements of my head; i have elevated heart rate from sitting or standing and even sometimes while laying down, seemingly at random; i have trouble breathing and heaviness in my chest; i have severe nerve pain, weakness, and discomfort in the back of my neck/upper spine. also, a few years ago on a CT scan it was found that i have tarlov cysts (ruled benign but i wonder if there is an association).

i am absolutely open to seeing another PCP in my area (los angeles CA) but have no idea where to start. i am seeing a rheumatologist in a couple weeks and wonder if he could possibly order the MRI for me? should i bother to ask? and is there a way to try to get insurance to cover it? i'm worried that, even if a supine MRI is more easily covered, it would not show the presence of CCI as easily. i appreciate any advice anyone has to offer, thank you!

Ashley!! You just described what I am dealing with DAILY for 2 years now. I have dizziness/vertigo every single day. I am bedridden and in no shape to leave house and see drs anythim soon, wore myself out doing that for 2 years but definitely would like to follow your story and see what you find as my neck feels the same way, I often place my hand behind neck to support it and hold it up it almost feels.

 

[sunshine44]

Just reading up on this and this was one of my first symptoms 2 years ago when things got serious. I have had no consult nor been diagnosed with this but suffice it to say I have considerable trouble holding my head up and constantly grab that back area of my head to support it as well and massage it bc of it being sore.

 

[gm286]

Don’t want to overcrowd the discussion too much but I re-watched Dr Montoya’s Stanford talk early 2018 (it’s an interesting hour long video) and he also mentions EDS/CFS overlap around the 30:00 mark.

Addresses the replicated finding that the TGF-B cytokine is consistently found to be elevated among both CFS and EDS. He goes on about being glad they found several other cytokines being highly active in other studies.

If anyone knows anything about TGF-B I’d be really interested to learn. Just really curious as to how it works and what we can do about inhibiting it. I mean, it might be a tangential thing for some CFS patients but in the ones that indeed have overlap with EDS, this might be super relevant.

 

[frozenborderline]

So I had a first appointment with the PT, who was good and willing to listen to bolognese instructions. Problem is Bolognese didn’t have many instructions. The PT, being a cautious guy who knows this area is complicated, wanted to know how many pounds of force to apply during traction , how long to do the traction for, and how often. When we asked bolognese these questions he said it didn’t matter! This response bothers me a little bit. If he thinks it’s important for diagnosis , surely the amount matters?

 

[frozenborderline]

Don’t want to overcrowd the discussion too much but I re-watched Dr Montoya’s Stanford talk early 2018 (it’s an interesting hour long video) and he also mentions EDS/CFS overlap around the 30:00 mark.

Addresses the replicated finding that the TGF-B cytokine is consistently found to be elevated among both CFS and EDS. He goes on about being glad they found several other cytokines being highly active in other studies.

If anyone knows anything about TGF-B I’d be really interested to learn. Just really curious as to how it works and what we can do about inhibiting it. I mean, it might be a tangential thing for some CFS patients but in the ones that indeed have overlap with EDS, this might be super relevant.

tgf beta is apparently found in mold illness a lot

 

[rel8ted]

Problem is Bolognese didn’t have many instructions. The PT, being a cautious guy who knows this area is complicated, wanted to know how many pounds of force to apply during traction , how long to do the traction for, and how often. When we asked bolognese these questions he said it didn’t matter! This response bothers me a little bit. If he thinks it’s important for diagnosis , surely the amount matters?

@StarChild56 might have an answer.

 

[StarChild56]

@StarChild56 might have an answer.

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?

 

[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?

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

 

[frozenborderline]

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

 

[StarChild56]

I should add...My PT is awesome and she also said she'd never had a doctor call her to talk about what he wanted done before - she was impressed. The sessions were scheduled for 30 minutes; but she is so responsive to my reactions that over time she has figured out I do best with about 10 to 15 minutes of traction. Any more, I tend to have problems. She made those decisions on her own, I am sure. She is really amazing. She has her doctorate's. She was willing to watch the 1.5 hour video that someone here on the forum posted, I wish I remembered who, because it was so helpful to me - the one by that Osteopath and PT who talks about CCI, Chiari and EDS, the craniocervical fusion, and a lot about PT.

I don't know if that is helpful or not. Sorry.