CCI SURVEY – for all ME/CFS patients tested for CCI and related conditions (please answer whether tested positive or negative)

[Donsboig]

I've just added my answers to the survey.

Both Dr Bolognese and a UK neurosurgeon (who wants to remain anonymous for now) diagnosed me as having mild CCI, based on measurements (CXA was 134, Grabb-Oakes just over 9mm). However, based on my symptoms, and my response to Dr Bolognese's provocative tests, they were confident that I am not a candidate for surgery.

I had mild, short-lived improvement from over the door traction, but the provocative tests didn't elicit any reaction.

My main symptoms are PEM from physical and mental exertion, POTS (physical discomfort and a need to lie down when sitting or standing up) headaches, brain fog and difficulty performing complex mental tasks (eg the crossword). Based on the severity scale used in the survey I would put myself somewhere between severe and moderate, I spend most of the day laying down but I'm able to go for short walks (20 minutes) on good days.

The main thing both surgeons found of significance was severe stenosis of both my internal jugular veins, caused by external compression between my styloid bones and the transverse processes of my c1 vertebra. There is some debate as to whether this could be causing my symptoms; I am seeking an appointment with Dr Higgins in the UK to investigate this further.

 

[Pyrrhus]

@debored13
Just curious. Did you ever get a clear diagnosis that you'd be willing to share?

 

[frozenborderline]

@debored13
Just curious. Did you ever get a clear diagnosis that you'd be willing to share?

I was diagnosed with cci over a year ago. Thought I mentioned it. The trouble is surgery. If you go to my YouTube page you can find that my latest video discusses this

 

[Wayne]

The trouble is surgery.

@debored13 -- Have you considered prolotherapy as a possible alternative to surgery? Here's a LINK to some search results on YouTube for "cervical instability". Most of the videos are by a Dr. Ross Hauser, someone I'm thinking about seeing. I think his videos are informative, and describe many symptoms that are common for people with ME/CFS.

 

[frozenborderline]

@debored13 -- Have you considered prolotherapy as a possible alternative to surgery? Here's a LINK to some search results on YouTube for "cervical instability". Most of the videos are by a Dr. Ross Hauser, someone I'm thinking about seeing. I think his videos are informative, and describe many symptoms that are common for people with ME/CFS.

In short I've seen basically no impressive studies on this therapy and only very few impressive anecdotes.

 

[CristianSerious]

Hi all,

I have been diagnosed by Doctor Gilete with CCI, AAI, Occult Tethered Cord and a stenosis due to the instability.

I am hypermobile but with no connective tissue disorder. The hypothesis that holds the most ground in my case is I may be a case of Grisel's syndrome(https://en.wikipedia.org/wiki/Grisel's_syndrome) combined with mast cell activation syndrome, my CFS started after a strep throat infection.

From now to surgery there is a gray gap that medicine did not fill up so the neurosurgeon recommended me to do anything that has empirical value to help my case.

Going to seek a second opinion from Doctor Bolognese and Doctor Atul Goel.

My question is about Tethered Cord did anyone get in contact with Doctor Veronese about and did the procedure he does ?
https://www.vanniveronesi.com/en/chirurgia-straordinaria/tecnica-chirurgica-e-mass-media

Looking forward for your reply's.

Kind regards,
Nasaud

 

[lenora]

Hello Everyone.....I think far too much emphasis is put on CCI defects only. There are plenty of illnesses (still Syndromes, most of them) where things like Syringomyelia (SM) and Arnold-Chair Malformation(ACM) are helped by surgery, but in many cases ME is still a problem. Still a lot of neck pain is relieved, and the ACM Surgery has now rendered the SM surgery unnecessary. A good thing, since out of the two, the SM is a very difficult and painful surgery. SM can now be accessed via the brain stem in surgery for ACM Repair. I'm sure it has come a very long way since I had it done well over 30 years ago.

Rest assured that other illnesses, diseases or syndromes (a collection of symptoms...typical!) will come along that can, perhaps, be helped by surgery. We definitely need a new group of neurosurgeons who have been especially trained in these surgeries. Just recently we lost the head surgeon at The Miami Institute, well known ]for giving excellent medical care, Dallas, where one neurosurgeon from S. Africa learned the early ACM Repair surgery, which also often took care of SM lower in the spinal cord, one from Denver....I find it hard to believe that these surgeons left without someone taking over the reins. You will have to travel to a major medical center, not every surgeon can/should be doing this type of surgery, the Chiari Institute is good, of course, but there are other options around the country. I don't have the "in" to complete such a list today, but someone must and we have to make as many places as possible available to people as possible. Places like the Mayo Clinic have no decent neurological department and that's a failing, especially since most people think it's above reproach. I've known too many wrong diagnoses, no diagnosis and a general lack of care from the neurological department. That needs to change.

Cleveland Clinic still seems to rank up there for diagnostics, at least, and there used to be an Institute in Rochester, N.Y. that had good press. I find it hard to believe that a torch hasn't been passed somehow. I'm just not in the day to day "know" that I used to be. Anyone??? Yours, Lenora.

 

[JenB]

Hello Everyone.....I think far too much emphasis is put on CCI defects only.

I would agree with this. In many ways, I think tethered cord is just as if not more important than CCI.

So far, syringomyelia seems to be quite rare in the ME community. I have only seen maybe one or two cases, both with obvious hEDS. CCI and/or AAI, tethered cord, cervical stenosis, Chiari and vascular compression (due to any cause) seem to be most common (in roughly that order).

 

[lenora]

Hello @JenB....my first surgery would be considered butchery by today's standards. It left me with long standing pain and neurological damage.

Newer surgery via the brain stem corrected both the ACM, and my SM...although most of the pain remained. I remember that it drove me to the point of insanity. I've learned how to deal with it, still have most of it but I am able to control it to a great extent. What I can't control is the severe exhaustion that is a part of this illness.

I'm still sorry that you're leaving, but hope you never leave this site. Your insights are valuable and are appreciated here. Please remember that in the grand scheme of things, most people are in your corner. Are you still going to do a TedTalk? You're bright and that mind needs to be used. Don't be embarrassed because what I'm saying is a good thing....and the truth. Yours, Lenora.

 

[Tella]

I've just added my answers to the survey.

Both Dr Bolognese and a UK neurosurgeon (who wants to remain anonymous for now) diagnosed me as having mild CCI, based on measurements (CXA was 134, Grabb-Oakes just over 9mm). However, based on my symptoms, and my response to Dr Bolognese's provocative tests, they were confident that I am not a candidate for surgery.

I had mild, short-lived improvement from over the door traction, but the provocative tests didn't elicit any reaction.

My main symptoms are PEM from physical and mental exertion, POTS (physical discomfort and a need to lie down when sitting or standing up) headaches, brain fog and difficulty performing complex mental tasks (eg the crossword). Based on the severity scale used in the survey I would put myself somewhere between severe and moderate, I spend most of the day laying down but I'm able to go for short walks (20 minutes) on good days.

The main thing both surgeons found of significance was severe stenosis of both my internal jugular veins, caused by external compression between my styloid bones and the transverse processes of my c1 vertebra. There is some debate as to whether this could be causing my symptoms; I am seeking an appointment with Dr Higgins in the UK to investigate this further.

Hey how are u now? Any updates?

 

[lenora]

I guess you could say I have something similar going on but it's with my carotid artery. I know that jugular vein stents can be implanted, know they're used for stenosis, but as with any of these procedures, they aren't without risks.

I used to have super low BP and menopause set in when I was 42. After that, and after I had Chiari Surgery, my BP went the exact opposite way...super high. Now one of the reasons a carotid stent was used (I have 6 in total...including the carotid) was to lower the BP, which it didn't. So now I'm juggling much needed meds, but the magic formula has yet to be found. Personally I think it's intracranial pressure, that's all I've been able to find that makes sense.

I would definitely see a cardiologist (perhaps that's what Dr. Higgins is) and have him evaluate you for a shunt. At least I shouldn't have more heart attacks or hopefully will miss a stroke. A few years ago they couldn't stent the carotid, but it's being done today. Who knows what will happen within the next 5 yrs. for you ? Stent surgery is fairly easy and is done with just an overnight stay in the hospital. Carotid stenting was a bit more serious, but I also didn't have to have anesthetic, which I considered a plus. If you want more info, please don't hesitate to ask. I wish you well as you continue your search. Yours, Lenora.

 

[Donsboig]

Hey how are u now? Any updates?

Pretty similar. I have managed to have an appointment with Dr Higgins but he is busy and the process is long and slow.

I had a catheter venogram to measure pressures on either side of the jugular stenosis. The pressure differences across the stenoses were 2 mmHg on one side and 3 on the other. Not huge but Dr Higgins thinks large enough to be significant.

I also had balloon venoplasty on one side (inflating a small balloon inside the vei to force the bones that are squashing it apart) to see if it made me feel better. I had it in the morning and felt a noticeable improvement for the rest of the day.

Next steps are balloon venoplasty on the other side, and then a lumbar puncture at a separate date. The lumbar puncture is to measure intracranial pressure and also to remove some CSF and see if that makes me feel better.

After all that he will decide whether I am a candidate for surgery (removal of styloids and / or shaving of c1 to create more room for the jugulars). On the results so far he's cautiously optimistic that surgery could help me

 

[TinaYesen]

@Hip
Firstly, this survey is tremendous, amazing work, wow. I'm being worked up and will complete in due time.

I dont know if this is helpful this late in the game, but in the "What ME Symptoms Do You Have" question, I'm wondering if it would have been good to add the below. This would capture those with orthostatic issues undiagnosed with POTS. It would also capture headaches, which seems to have been forgotten. Motor issues are also in ICC and I feel important as related to mechanical issues.

I know we're trying to keep short, but feel these are important ME symptoms.

34. Intolerance to standing
35. Intolerance to sitting upright
36. Headache
37. Motor disturbances e.g. muscle weakness, twitching, poor coordination, feeling unsteady on feet, ataxia

As an aside, I feel the above list of 37 could be a nice list of symptoms for those newly diagnosed to use as a tool alongside the ICC/CCC. E.g. providing to their doctor and for symptom tracking. Your symptom list is the best I've seen yet.

Likewise, in the two questions at the end on improvement post surgery, wondering if "Intolerance to Standing/Sitting Upright" could be added as an evaluated symptom post surgery? This would still catch data on orthostatic improvements from those not properly diagnosed with POTS. I see a good amount are answering "Never had this symptom." It would be good to know who are now able to be vertical more often, as that is a debilitating symptom.

Thank you again for this tremendous effort.

 

[Hip]

Firstly, this survey is tremendous, amazing work, wow. I'm being worked up and will complete in due time.

I dont know if this is helpful this late in the game, but in the "What ME Symptoms Do You Have" question, I'm wondering if it would have been good to add the below. This would capture those with orthostatic issues undiagnosed with POTS. It would also capture headaches, which seems to have been forgotten. Motor issues are also in ICC and I feel important as related to mechanical issues.

Thank you very much.

Yes, it could be that some people may not yet be diagnosed with POTS, NMH or OH, so it may have been better to ask them about any symptoms they have on standing.

Although I suspect that many people pursuing CCI or similar structural issues are probably pretty well informed about ME/CFS, so would know about POTS etc. These are conditions that can be easily diagnosed at home, so if you have not yet been diagnosed, it is easy to diagnose yourself.


It would be quite difficult for me to change the survey to include a new question on intolerance to standing, because in the spreadsheet results (in column Q), there is an algorithm working behind the scenes which calculates whether or not each patient satisfies the Canadian consensus criteria (CCC) of ME/CFS.

This algorithm is a spreadsheet formula which looks at all the symptoms and infections the survey respondent has entered, and then automatically determines whether or not the have ME/CFS by the CCC, based on their symptoms.

The ME/CFS symptoms which were included in the survey are all the primary symptoms that are used in the CCC. So these are symptoms the CCC considers the most important (of course there are many other ME/CFS symptoms).

So that's how the algorithm is able to work out whether or not you have ME/CFS by the CCC. That algorithm was a bit of a monster to write and test for correctness, especially with my brain fog, so I don't really want to disturb it now with any updates, in case I mess it up.



The headache symptom is included in the list of cervical medullary syndrome symptoms, so there is no need to ask about it again in the ME/CFS symptom question. Muscle weakness is also included in the cervical medullary syndrome symptoms.

 

[TinaYesen]

Although I suspect that many people pursuing CCI or similar structural issues are probably pretty well informed about ME/CFS, so would know about POTS etc. These are conditions that can be easily diagnosed at home, so if you have not yet been diagnosed, it is easy to diagnose yourself.

Ah, yes, good point. Encouraging folks to test at home, even if a medical practice already tested them as they may have missed it. (Ex. Univ of Penn hospital missed my POTS, Mount Sinai caught it.)

It would be quite difficult for me to change the survey to include a new question on intolerance to standing, because in the spreadsheet results (in column Q), there is an algorithm working behind the scenes which calculates whether or not each patient satisfies the Canadian consensus criteria (CCC) of ME/CFS.

Wow, that's so impressive, Hip. Yeah, best to leave as-is and just hope we've done the workup if we've gotten this far. At least we have some good data on POTS improvement. Much more than we had before your survey existed! 💜🙏

 

[Ale Frost]

I'm wondering if there have been an updates on this survey/results and if anyone knows of a survey that is also tracking age and duration of illness before surgery.

 

[Hip]

I'm wondering if there have been an updates on this survey/results and if anyone knows of a survey that is also tracking age and duration of illness before surgery.

Looking at the survey results spreadsheet, seems like quite a few new people completed the survey in March 2022, so it appears that the survey is still active.

I don't know how often earlier respondents to the survey update their survey answers (the survey is set up so that you can update your responses in future, in the light of new information). The idea was that people would keep their answers updated.


Once every 6 months or so, I used to remind people on the CCI Facebook groups about this survey, and remind them to either answer the survey, or update their survey results.

However, I have not been on these FB groups for some time now, so have not been posting reminders.

 

[Ale Frost]

Oh cool, I didn't realize that there were other tabs, so I didn't see the one with dates. Thank you! I can post this in the groups to remind people periodically too.

 

[Hip]

I can post this in the groups to remind people periodically too.

That would be great, thanks very much.

Yes, there are two main tabs in the survey results spreadsheet: the Responses tab which has all the raw data, and the Summary tab which summarises the more important data items.

And there is also the survey results in graph form.

yone knows of a survey that is also tracking age and duration of illness before surgery

There is question in the survey that covers duration of illness: search for the question "How long have you had ME/CFS?" in the results graphs.

 

[Tiffyshea]

My CCI story:

I just came across this survey and decided to post here afterwards, because my CCI is slowly getting better, and my me/cfs symptoms, improving a little. My neck also isn't healed all the way yet, and I just recently discovered that I have hypermobility, so I am still on the path.

But I wanted to share my neck improvement story, because there was a time that I was desperately considering the stem cell procedure thinking it was the only option. I wasn't.

To begin with, I was not diagnosed with CCI by a neurosurgeon. Two numbers in my Upright MRI reading were borderline abnormal. However, I did get a Digital Motion X-ray (DMX) which revealed some serious ligament laxity and hypermobility at my C1, along with a very straight neck. At the time I was fortunate as I lived in Colorado, and I started working with Dr. Katz in Boulder, one of the main chiropractors that works with the Centeno-Schultz clinic. He started me on a set of exercises on a power plate, along with a denneroll and ice, after getting adjusted from him, 2x week.

He took me out of a great deal of neck pain

I was terrible at doing the Denneroll or the exercises at home, so I only did them 2x a week, and yet my neck was healing so so fast. The curve reappeared, and several numbers taken from my Digital Motion x-ray (DMX) improved... My original DMX showed my C1 sliding over 7mm past C2 on one side, and over 4mm on the other side. That went down to under 4 on both sides before I moved 4 months later.

Once I moved I searched everywhere for a good chiropractor that could do what he did. He practices biophysics chiropractic, and there are a lot of biophysics chiropractors in my new town, so I thought it would be easy. But they are all horrible at neck adjustments - even ones that claim to specialize in CCI and neck problems did nothing but increase my pain dramatically. I spent July - September on my couch with ice and massive neck and head pain from terrible adjustments by biophysics chiropractors as I went through a long list trying to find one that worked. I tried a few non-biophysics ones too, and did find one that didn't hurt.

Which is when I decided that I would stop seeing new chiropractors, and to stay with the one that didn't hurt. He doesn't seem like he is going to help me in the long run, but can get my neck adjusted without causing pain.

I also bought a power plate, the thing Dr. Katz had me doing only three exercises on. Yes I bought a $2000 machine to do three exercises every couple of days.

I recently had a new DMX done, and I am no longer a candidate for the stem cell procedure. My C1 is moving less than 3mm over what it should on either side.

Here's what I do:
1. I do a set of 4 exercises on a power plate 3 days a week, then I lay on the denneroll (I spent a lot of time on the pediatric one before moving to the adult one as this used to cause a lot of problems.) for 10 minutes, then I ice for 10 minutes.

2. I started doing Somatic Movement Therapy through these people: https://somaticmovementcenter.com/
Through this therapy I have realized I have some issues and old injuries in my shoulders, and the exercises seem to be really helping with this. I think my shoulder is causing my C1 to misalign and is partly to blame for an inflamed brainstem.

3. 2 - 3 days a week I do the exercises recommended as post procedure physical therapy as outlined below. Yes I bought the head laser and everything: https://mail.google.com/mail/u/0/#i...tbBVjSKpNdpvDpwRSmqDSqlQCJsdjbPwqpSPcKxcPBrpL

4. I see my chiropractor 1x a week to get things aligned.

5. I stay away from sugar as much as possible. It makes my ligament laxity worse.

Basically I had to figure out what to do to best help myself without Dr. Katz. So I put this together as my plan.

There was a time this summer, while in tears and pain and frustration over having moved away from the one person I thought might help me, that I started considering traveling back to Colorado for the stem cell procedure. It would have cost around $15,000 with travel expenses, and I would have spent 6 months recovering afterwards. I am now very glad I didn't do it.

On the other hand I have a friend who got ME/CFS after having a terrible case of Epstein Barr. She is NOT hypermobile. She had the stem cell procedure twice and believes it was the best thing she's ever done. her theory is that the extremely high fever she had weakened the ligaments in her neck causing the CCI. She also had a surgical case of CCI, which I did not.

Anyway, just another person's anecdotal story to help out anyone who might be wondering what to do!