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Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

Daffodil

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anyone know what happened to mojoey? i know he started his own website but i lost track of him. just saw an old post and remembered. i wonder if he is well?
 

Daffodil

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has anyone felt sick after gandolinium? i had an MRI with contrast and i feel bad even 2 days later. thanks
 

Wayne

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has anyone felt sick after gandolinium? i had an MRI with contrast and i feel bad even 2 days later. thanks
@Daffodil -- Many people feel sick after gandolinium, some of them severely so. If that's the case, it would be good to try to detoxify it from the body--I think it's considered a heavy metal. You may want to check into Sodium Thiosulfate (STS) baths, which are excellent for detoxifyinig a number of heavy metals.
 

Daffodil

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@Daffodil -- Many people feel sick after gandolinium, some of them severely so. If that's the case, it would be good to try to detoxify it from the body--I think it's considered a heavy metal. You may want to check into Sodium Thiosulfate (STS) baths, which are excellent for detoxifyinig a number of heavy metals.
thanks:) are you still doing well? are you doing anything new re: your cervical issues?
 

stefanosstef

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Can anyone tell me if this looks like chiari?This MRI has been evaluated and nothing was diagnosed.Apart from that it looks like a part of my skull is pushing my cerebellum, creating a hernia.I am not a doctor and this could be perfectly normal but I haven't seen it in any other MRIs that I am looking at.
 

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Daffodil

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Not doing as well--but OK. Am looking into "Positional Cervical Compression", which I posted about on the following thread: -- Fibromyalgia and positional cord compression
i think i have this. what can be done about it other than surgery?

i started NUCCA, went a few times, then cancelled appts due to coronavirus. my chiro didnt even wear a mask or take it seriously at all. i had to take off my mask because of where she had to press to do the atlas adjustments.
 

Wayne

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i think i have this. what can be done about it other than surgery?
It's hard for me to imagining making extensive efforts to get help from the medical field, and focus most of my energy on what I might be able to do for myself. My latest is the exercises demonstrated in the link I posted (below). I'm just getting started, but so far, I feel I've already experienced some subtle, yet positive shifts. I like the fact that for the most part, the exercises are very gentle stretches.

"How To Fix Forward Head Posture - 3 Easy Exercises (From a Chiropractor)"
 

Learner1

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i think i have this. what can be done about it other than surgery?
I have been in two significant car accidents with 2 significant whiplash injuries. The first injury dogged me for 15 years, til I finally got serious and did prolotherapy injections with testosterone, to stimulate muscle growth to support my neck better and physical therapy and weightlifting.

Then came accident #2, worse than the first, 2 years later. Whiplash injury, 3 torn rotator cuff mudcles, and hip and lower back were twisted. Determined not to suffer, and with full blown ME/CFS, I carefully worked at it. At first, I had massage therapy and cranial/sacral therapy, and then physical therapy. Then, I had prolozone with nutrients and ozone to promote healing, and platelet rich plasma. Then lots of PT with a doctor of physical therapy, doing a lot of very fine motions to gradually correct my structure and position. I was very ill during most of this and it was slower tgsn fir normsl people due to how sick I was.

I brought jeff_w's story to the doctor late in the process, and she thoroughly checked me out. We concluded that I didn't seem to have the structural issues discussed in this thread, even though I had the significant injuries and have permsnrnt neck damage to this day, even though I shoukd be susceptible. I believe that the injections, the therapy, and a comprehensive nutrient support plan with collagen and muscle building nutrients has helped me work my way out of a potentially bad situation to have full function today. In 2012, years after the first accident, going over a speed hump wiyh my husband driving, was excruciating, and I held my head in any risky situation to protect my neck. Not any more.

I'll never know for sure but do think these various treatment modalities could help other patients in some circumstances as well.
 

Daffodil

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I have been in two significant car accidents with 2 significant whiplash injuries. The first injury dogged me for 15 years, til I finally got serious and did prolotherapy injections with testosterone, to stimulate muscle growth to support my neck better and physical therapy and weightlifting.

Then came accident #2, worse than the first, 2 years later. Whiplash injury, 3 torn rotator cuff mudcles, and hip and lower back were twisted. Determined not to suffer, and with full blown ME/CFS, I carefully worked at it. At first, I had massage therapy and cranial/sacral therapy, and then physical therapy. Then, I had prolozone with nutrients and ozone to promote healing, and platelet rich plasma. Then lots of PT with a doctor of physical therapy, doing a lot of very fine motions to gradually correct my structure and position. I was very ill during most of this and it was slower tgsn fir normsl people due to how sick I was.

I brought jeff_w's story to the doctor late in the process, and she thoroughly checked me out. We concluded that I didn't seem to have the structural issues discussed in this thread, even though I had the significant injuries and have permsnrnt neck damage to this day, even though I shoukd be susceptible. I believe that the injections, the therapy, and a comprehensive nutrient support plan with collagen and muscle building nutrients has helped me work my way out of a potentially bad situation to have full function today. In 2012, years after the first accident, going over a speed hump wiyh my husband driving, was excruciating, and I held my head in any risky situation to protect my neck. Not any more.

I'll never know for sure but do think these various treatment modalities could help other patients in some circumstances as well.
full function??? i dont even know what to say. nothing about this is ever clear cut
 

Daffodil

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@Wayne thanks for the link.

sorry i cannot remember....did you have severe brain fog before the AP treatment? if so, could you please tell me where you are now and what made the most difference? do you ever have NO brain fog?

thank u
 

Daffodil

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Do you doubt I have full function, or can you just not imagine it? It's true, bytvit hsd taken a LOT of hard work to get here...
ok i dont doubt it but do you have to do certain things to keep the full function? can you pull and all nighter and still be able to function the next day? can you work full time? can you do cardio?

can i know about the brain fog?

also, do you think it was primarily mechanical and helped by the PT/cranio sacral?

have you ever had NK cell function tested and if so, it is normal?

did you ever feel an infection such as EBV made you worse?

which neurosurgeon assessed you for CCI?

can i PM you plz?

thanks!!
 
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Learner1

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i dont doubt it but do you have to do certain things to keep the full function? can you pull and all nighter and still be able to function the next day? can you work full time? can you do cardio?
I have to keep exercising my back muscles, preferably by lifting weights or using exercise bands/cords. If I don't, my muscles don't support my neck properly. This is a challenge as we are supposed to stay home due to COVID-19, but I ordered some light dumbbells arriving tomorrow. and will be able to continue my program.

No, I can't pull an allnighter and function the next day. Nor do I want to. Having ME/CFS has taught me to be wise and disciplined about what J do. I still have issues staying asleep and have been averaging about 6 hours of sleep and functioning though. Sometimes I nap but not always.

I still get enough medical treatment that it is difficult to work full time. I've been working 20 hours a week, with the rest of what would be work time dedicated to exercise, eating well, medical treatment and dealing with insurance and all the bureaucracy and organization of this illness.

Yes, I can do cardio. I have issues with upping intensity and have to be careful, but I am averaging about 9,800 steps a day and hit 20,313 steps recently without triggering PEM.
can i know about the brain fog?
I had significant brain fog and cognitive dysfunction which was related to chronic infections. 1 month of valganciclovir made it start to go away, and continued treatment for infections and mitochondrial nutrient support made it go away.
have you ever had NK cell function tested and if so, it is normal
Yes. It was very low. It has not been tested since I've been better. My immunoglobulins were low as well.
did you ever feel an infection such as EBV made you worse?
Yes, chronic EBV, HHV6 and chlamydia pneumoniae made me worse.

The infections can impact neck issues by robbing the body of vitamin C which can lead to reduced collagen and less support for the neck.
also, do you think it was primarily mechanical and helped by the PT/cranio
No, I think I had multiple things going on. My point in posting was that by all rights, I should have had neck problems contributing to my illness, given that I was in two serious car accidents with permanent spinal damage, and being very ill dealing with the aftermath, but due to the treatments, my neck slowly healed and got stronger with the injections and as I worked through the therapy program, while providing nourishment to heal.
which neurosurgeon assessed you for CCI?
I see 2 neurologists and a top ME/CFS specialist who has sent several patients to Dr. Bolognese. I have discussed it with them. The main examination zi had was by the doctor of OT, with ejomI shared jeff_w's comments. She read through it all and moved my head and neck into various positions do that I felt that if I indeed had a problem it would have been very clear. This was very late in my recovery process and I had done a lot of work to strengthen my neck muscles and posture by that point.

If the exam had been a year earlier, a problem would have been more obvious and may indeed have contributed to my ME/CFS symptoms.

You had asked if there were any other options out there for these neck issues.i believe that the path I took helped me out of a very bad situation and to be able to recover full movement without pain. I researched prolotherapy, prolozone, and platelet rich plasma and case studies of other patients before trying them. including one woman badly damaged by being thrown by a horse who was in very bad shape before the injections fixed her.

I certainly am nit promising these treatmentswould work on every patient, but they might be worth looking into for some. I have seen the aftermath of back and neck surgeries, including my mother's, and they too have their pros and cons.
Sure.
 

Daffodil

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@Learner1 incredible. thanks for writing all of that out. this gives me some hope. i have done stem cells into the cervical ligaments at a great cost. i do not notice much difference but they say people need multiple treatments which i cannot afford at present.

may i ask if you have the normal neck curve...lordosis or something?

have you ever thought of seeing an upper cervical chiropractor? i mean i guess you dont have to now but...
 

lenora

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Hi....I had Syringomyelia and my first surgery for it in 1987 (I believe & can't access my files at the moment). The SM surgery back then was still basically butchery and my shunt promptly blocked within 3 mos., and was in the process of backing up....once again. The insurance company gave me no end of trouble, until I started play the game their way and playing it smart.

During the next few years (after I refused a second shunt surgery), a new procedure called Arnold-Chiari Repair surgery came along and with it, the supposed "cure" for Syringomyelia. I was lucky, my Chiari showed up (even with the MRI's of the day) and the specialist recognized it and performed surgery at the time HE deemed necessary....a full 5 yrs. after my shunt surgery. Talk about living with pain, but I did it and was young enough to pull on through the Repair Surgery. Of course during this time, more and more information became available and the surgeon, who had done plenty of the Repairs in his S. African practice, only gained in experience. I was fortunate in that the Chiari showed up right from the beginning of my 45 odd MRI's.

I had enough time to re-build my body and I did things without the surpervision of multiple doctors.. OK, the surgery may not have ranked among the most comfortable ever had, but I have to say that it was a "nothing" compared to the shunt procedure. After the first 10-14 days my head began to knit together nicely and I was home free, as they say. I've since sent many people to this surgeon and he has been able to help most. I don't even know if he's still practicing today....probably not. We didn't have the newer MRI's in my day, and I'm fortunate that it was caught in time. While I never fully recovered, mainly due to damage incurred over the years, I was light years ahead of where I had been. The one really bad leftover has been the constant, horrid pain and the exhuastion. I was told I would have ME for the remainder of my days....and I have. I've known people who have passed away from neurological diseases that one would think would be cringeworthy....and yet they've had no pain. I can't imagine a life without pain, and I doubly applaud those who are able to live with it. Still, some of us simply can't be helped.
 
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Learner1

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No, my neck does not have a normal curve to this day. It did originally, but the accidents changed it. its broomstick straight. Multiple doctors have gasped when looking at my imaging.:jaw-drop:

I was referred to a chiropractor who had a program to work with me 2-3 days a week with a bunch of machines that, quite frankly, looked like a medieval torture chamber, to fix it, but by that point, I functioned well with no pain of symptoms and I was tired of therapy (and paying for it) so left it.

As for cost, the prolozone/prolotherapy injections were about $300-350 each, of which I had 2-3 for each accident,