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

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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.
 
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Wayne

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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.
 
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@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.
 
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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

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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

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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

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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

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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

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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.
 
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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