Rufous McKinney
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well, when I lie back, on my back wiht my head on a pillow, I sometimes feel worse. Just because you're laying down does not mean the neck is properly aligned.
Jen brea. Interesting interview
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Rufous McKinney
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its Jeff.....
I just listened to the video and no, she is not a long distance runner. Her husband, Omar is. Both are into health matters, though.
It would seem that after a lot of starts, the true cause was found. I would try to also contact Jeff White and see what he feels the percentage of cured patients is. Also, exactly what is a cure? We may cycle from one problem to another.
Like many others, I've had this illness from the time no one and I do mean no one. knew what it was. Interestingly enough, even though there wasn't a name, each doctor I saw knew there was something wrong, but what? Always they made a referral. I was never made to feel that I was a troublesome patient with nothing wrong. That isn't necessarily the case today, although I do have to say that it takes at least 3 visits for the patient and doctor to begin to know each other. I would introduce problems slowly.
I first had surgery for cysts inside my spinal cord. That was pretty awful surgery. A number of months later, I was also diagnosed with Fibromyalgia, which gave me no end of trouble and pain. There were no meds that helped, so I somehow dealt with it. One does.
I've had many problems since, one being autoimmune encephalitis. This was an offshoot from another problem I had. Point is: Yes, I believe Jen Brea when she says a disease is like a buffet and one thing after another can be added at anytime. It can also be taken away. My FM is, for the most part, under control today. I do take medication for it, but it no longer causes the screaming pain it did. I have a lot of problems, but then I look at others my age and they now have big problems, too.
We're also a genetic bag....heart problems, surgeries, intestinal more surgery, brain surgery was relatively easy for me, but I won't be having it again. The vagus nerve can give problems many years later....really, it just gets tiresome and I've cut way down on doctors and 2 visits/year. They're now 1. Tests, only as really needed.
Funny, as Jen Brea pointed out, different doctor can find different problems in the exact same MRI for example. I've always taken mine with me for the doctor to read them him/herself. That's how my initial problem was found in the first place. A second doctor found another problem. I hope you're doing your best given your circumstances. I'm looking forward to the new film Jen Brea figures she'll have in '04 or '05. I wish her well, she's a great asset. Yours, Lenora
It would seem that after a lot of starts, the true cause was found. I would try to also contact Jeff White and see what he feels the percentage of cured patients is. Also, exactly what is a cure? We may cycle from one problem to another.
Like many others, I've had this illness from the time no one and I do mean no one. knew what it was. Interestingly enough, even though there wasn't a name, each doctor I saw knew there was something wrong, but what? Always they made a referral. I was never made to feel that I was a troublesome patient with nothing wrong. That isn't necessarily the case today, although I do have to say that it takes at least 3 visits for the patient and doctor to begin to know each other. I would introduce problems slowly.
I first had surgery for cysts inside my spinal cord. That was pretty awful surgery. A number of months later, I was also diagnosed with Fibromyalgia, which gave me no end of trouble and pain. There were no meds that helped, so I somehow dealt with it. One does.
I've had many problems since, one being autoimmune encephalitis. This was an offshoot from another problem I had. Point is: Yes, I believe Jen Brea when she says a disease is like a buffet and one thing after another can be added at anytime. It can also be taken away. My FM is, for the most part, under control today. I do take medication for it, but it no longer causes the screaming pain it did. I have a lot of problems, but then I look at others my age and they now have big problems, too.
We're also a genetic bag....heart problems, surgeries, intestinal more surgery, brain surgery was relatively easy for me, but I won't be having it again. The vagus nerve can give problems many years later....really, it just gets tiresome and I've cut way down on doctors and 2 visits/year. They're now 1. Tests, only as really needed.
Funny, as Jen Brea pointed out, different doctor can find different problems in the exact same MRI for example. I've always taken mine with me for the doctor to read them him/herself. That's how my initial problem was found in the first place. A second doctor found another problem. I hope you're doing your best given your circumstances. I'm looking forward to the new film Jen Brea figures she'll have in '04 or '05. I wish her well, she's a great asset. Yours, Lenora
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mattie
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I had cci fusion surgery in 2019. It did not cure my ME CFS nor Dysautonomia. But I have improved from severe to moderate.
JES
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On social media like everything else these days, but many groups were closed and the ones remaining are harder to find.
I guess it's proof there is an issue.
To me it just confirms, the issue is in the tissue. Hence looking for gene editing and stem cell / telomerase help
Jen says there is an underlying issue/ vulnerability...but if that catabolic state, that weakening, whatever it is, the more the health is impacted.
I wouldn't look at CCI as perhaps the only problem. It's one of many and if you're fortunate and have it, plus know a great neurosurgeon, you're probably going to have some help.
First it has to be determined exactly how many people have this particular problem. It's not an easy surgery, and recovery is one full year. @mattie, I'm sorry that it didn't provide you with the cure you had hoped. However, I'm glad that you're now in the moderate ME category and hope that you'll find even more improvement in the future. There are many problems that stem from the brainstem and the spinal cord. Top to bottom...in all ways.
FYI I'm almost 77 and can't really complain (well, I could but what's the point?). I've survived many things, have been a test patient for different therapies, have been diagnosed as ill for approx. 40-45 years (one forgets), worked with early groups for SM, FM, COH, ME, Ehler-Danlos, ACM, have undergone early surgical treatments, and I'm really not in bad shape at this point.
Others are worse and it's a time of life when pain and death are often hand in hand. I'm now just one of the gang and have a wonderful husband who has helped get me there. May I wish all of you better health and we'll all look forward to Jen Brea's new film later this year or sometime next year. She thinks the title may change, so I'll not include it now. Yours, Lenora
First it has to be determined exactly how many people have this particular problem. It's not an easy surgery, and recovery is one full year. @mattie, I'm sorry that it didn't provide you with the cure you had hoped. However, I'm glad that you're now in the moderate ME category and hope that you'll find even more improvement in the future. There are many problems that stem from the brainstem and the spinal cord. Top to bottom...in all ways.
FYI I'm almost 77 and can't really complain (well, I could but what's the point?). I've survived many things, have been a test patient for different therapies, have been diagnosed as ill for approx. 40-45 years (one forgets), worked with early groups for SM, FM, COH, ME, Ehler-Danlos, ACM, have undergone early surgical treatments, and I'm really not in bad shape at this point.
Others are worse and it's a time of life when pain and death are often hand in hand. I'm now just one of the gang and have a wonderful husband who has helped get me there. May I wish all of you better health and we'll all look forward to Jen Brea's new film later this year or sometime next year. She thinks the title may change, so I'll not include it now. Yours, Lenora
Hello @Oliver3. I listened/watched the video and I still can't answer your question. I would follow through on listening to others about this matter and I would also get in touch with Jen Brea at either ME Support or the address she gave at the end of her interview.
It seems that it's not easy to diagnose even though there are a few specialists who are able to do so. I expect the demand for them is great.
Do you have symptoms of Ehler-Danlos Syndrome (EDS)? Even if you do, it doesn't mean that you need or should have surgery. I know that many have had it, it has been successful, while others have only had moderate improvement. We really need to find out what the percentages are...and perhaps Jen may have something along those lines.
Years ago, I had probably the front runner of CCI surgery. It was Arnold-Chiari Malformation (ACM) and it helped me immensely, well at least my constant neck pain and the cysts that formed inside my spinal cord.
It didn't do anything for my ongoing pain, but even though it was brain surgery, I healed quickly and was young enough to find the energy to at least finish raising my children. This was a long, long time ago. I'm not having surgery again at this point in my life (77 years old, or close). My big foe now is osteoporosis, so things change as I can assure you. Some things improve and some may decline or stay the same.
I think CCI is the darling surgery at the moment. Many were also not helped by Chiari surgery, which was experimental at the time. I would see if one of the specialists will read your MRI's and will settle this matter one way or the other. The video is almost useless b/c she states that you can still have CCI even if you pass the above.
The Dr.'s P.A. should be able to tell you exactly where the MRI should be taken, and it will probably involve contrast. That's fine, I've had it multiple times without any problem. You probably have also. Not all MRI's can be used for diagnostic purposes for specific problems. Good luck and I hope you'll be able to find the information you need. I understand that some of the CCI threads have now disappeared. Not a particularly uplifting sign....unless they're all cured, of course. I wish you well. Yours, Lenora
It seems that it's not easy to diagnose even though there are a few specialists who are able to do so. I expect the demand for them is great.
Do you have symptoms of Ehler-Danlos Syndrome (EDS)? Even if you do, it doesn't mean that you need or should have surgery. I know that many have had it, it has been successful, while others have only had moderate improvement. We really need to find out what the percentages are...and perhaps Jen may have something along those lines.
Years ago, I had probably the front runner of CCI surgery. It was Arnold-Chiari Malformation (ACM) and it helped me immensely, well at least my constant neck pain and the cysts that formed inside my spinal cord.
It didn't do anything for my ongoing pain, but even though it was brain surgery, I healed quickly and was young enough to find the energy to at least finish raising my children. This was a long, long time ago. I'm not having surgery again at this point in my life (77 years old, or close). My big foe now is osteoporosis, so things change as I can assure you. Some things improve and some may decline or stay the same.
I think CCI is the darling surgery at the moment. Many were also not helped by Chiari surgery, which was experimental at the time. I would see if one of the specialists will read your MRI's and will settle this matter one way or the other. The video is almost useless b/c she states that you can still have CCI even if you pass the above.
The Dr.'s P.A. should be able to tell you exactly where the MRI should be taken, and it will probably involve contrast. That's fine, I've had it multiple times without any problem. You probably have also. Not all MRI's can be used for diagnostic purposes for specific problems. Good luck and I hope you'll be able to find the information you need. I understand that some of the CCI threads have now disappeared. Not a particularly uplifting sign....unless they're all cured, of course. I wish you well. Yours, Lenora
Rufous McKinney
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Watching it made me sure not want to do any of that. so that may indicate: CCI likely.
But I think focusing on exercises to strengthen ligaments etc, might be worthwhile.
We need to be SO careful because I did a single vagal nerve stretch thing and held it for 30 seconds, which triggered three months of severely bad neck/pulled cartilage or something.
Mimicry
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For what it's worth, a friend of mine who has documented CCI travelled to Poland to receive prolotherapy last year and unfortunately it didn't benefit her at all. Now she's looking into getting a surgery either here in Finland or in Poland with the same doctor who administered the prolotherapy injections.
Rufous McKinney
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I dont really know if they are successful, but the Florida place works on returning the proper neck curvature prior to doing prolotherapy.
Personally I think m.e. is eds in a huuuuge percentage of cases. Multiple areas can be affected or just one area. There are multiple issues occurring most patients.
I'm so cheesed off with our bad luck
JES
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Cases... I'm more open to that. What is clear by now is that this CCI surgery, however, isn't some kind of magic fix and shouldn't probably be done at all by most people. If CCI worked we should have reports of full remissions, but we have none. We have some reports of partial remissions, which are even more prone to be placebo effect. ME/CFS like any other condition is not immune to placebo effect especially when the remission isn't full like going from bedbound to tolerating physical exercise normally.
And when the CCI surgery doesn't work as expected the question also immediately arises, why not if we think EDS is causing problems in the neck area? Perhaps there is some technical explanation that an expert can answer, but doesn't seem obvious to me.
There are also cheap ways to test if CCI somehow contributes to ME/CFS. You can simply buy one of these cervical collars from for example Amazon and try it out to see if wearing it reduces symptoms. You can also buy a neck traction device that is supposed to help right away if CCI is causing pressure on the brain stem. I tried both and they made no difference to my symptoms.
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Worth a look for the possible side effects of proloteraphy: https://web.archive.org/web/20210610102147/https://rosshauserreview.com/
Rufous McKinney
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hypothesizing that our brains stems drop.......and that isn't being addressed by the surgery.
Rufous McKinney
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unfortunate this comes with the territory. I found the videos encouraging and exciting, yet I know I'd never let anybody inject anything into my neck. It's all just too risky.
And if he actually says: Easy Peasy.......that alone is highly suspect. Of course there are could be negative results or even injury.
I did notice other places do "prolotherapy" so maybe there is more info out there someplace on these types of treatments.
sunshine44
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F