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

Daffodil

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can you guys join the facebook groups? i post mostly there now. they are many who have had surgeries already and many discussing less expensive options. there are cheaper surgeons out there. there is even a world expert in india who works at a public hospital who has offered surgery to 2 people i know of.

due to covid, henderson is doing long distance consults too.
 

lenora

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Hi Daffodil,

Yes, there are neurosurgeons all over the country who can operate. As far as the cheapest, I'd be somewhat concerned. If they can earn more with patient A. or insurance Co. A., why would they lose money by being the cheapest for B? There are surgeons in Florida, Arizona, Colorado, Calif., Texas...almost everywhere you can think of who are now aware of this problem and know how to repair it. I would want plenty of references though. It used to be that The Chiari Institute in NYC and very few other hospitals could handle shunts or even Arnold-Chiari Malformation Surgery. Now most large cities most certainly have them. These doctors work hard, long hours...you definitely want someone experienced. Foreign doctors or doctors who have worked in foreign countries are generally the ones who can recognize the problems immediately. Why? Because in most cases a simple 'B' vitamin, or Folic Acid was missing in the mother during the first important months' of pregnancy. I never told my mother the cause, what's to be gained by making someone feel responsible? Actually it wasn't until we had a large no. of babies with anencephaly born in the Rio Grande Valley of Texas that experts were finally able to fill in the missing question. The absence of that 'B'vitamin during pregnancy. Syringomyelia is considered a neural tube defect, caused also by the missing vitamin and genetics. The same with Tethered Cord Syndrome.....apart from anencephaly I have the others, although I haven't had the Tethered Cord Syndrome repaired. Right now it isn't giving me symptoms, but who knows what the future holds?

I wish everyone better health, the stop of further decline and, hopefully, a life without pain. Yours, Lenora.
 
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JenB

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FWIW I disagree that there are surgeons “all over the country” for most of these diagnoses. Craniocervical fusion in non-traumatic cases and adult, occult tethered cord syndrome are still the bleeding edge, and there is a small number of people I would trust to diagnose them, much less operate, much less operate w/ appropriate attention to EDS and/or MCAS.

Chiari, yes, there are now many. Unless you have complex Chiari (Chiari + CCI).
 

lenora

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Hi Jen....Thanks for your input. Compared to 35 yrs. ago, when there was nothing except maybe the Chiari Institute which was a maybe, maybe not help, we've come a long way in providing the mid-part of the country with doctors and, of course, both coasts have them as Well as The Barrow Institute in Phoenix, Dallas (at least at one time, I haven't check on things lately & everyone is nearing retirement) and, of course The Florida Project.

Those people we could trust. Ehler-Danlos we didn't have much for in the way of help, and to be honest, I don't know about your situation. I'd never send anyone to places that were bad for them (based on my feedback andin those years, it was plenty). It wouldn't surprise me if we even came up with a new diagnosis for things today. I think about you, and thank you for bringing this to the public eye, for being on the Ted Talk and for so many other things. Also for the movie you made. It must exhaust you at times.

So no, if someone had what you have, I would suggest that they contact you. Yours is a diagnosis that we think of as new (when all along a lot of people had/have it). I know my limits, and I even tried holitistic approaches to the problem. But I knew there was a problem and tried to keep going to doctors who could help me. I'll assure you of this, thank goodness, there wasn't one person who didn't believe me, but they just didn't know what to do. By the end of this foray I had a lot of "pictures" both with/without contrast and I took them with me everywhere. I have very significant scoliosis, up high where there is no twisting...at least yet! I also have scoliosis and very severe lordosis. I'm the typical patient, but no one knew it then.

This is 35 years ago, no one knew anything.. The day after I came home from my spinal cord surgery, a woman camed Barbara White from a group called American Syringomeylia Alliance Project from a small town in Texas contacted me. It is known as ASAP and operates throughout the world. I was member #3. I had left my name with National Institute of Health had nothing on this disease and had never heard it. I inisisted that they they take my name and address in case anyone had "come a lookin'. It was the same everywhere I went and I'm grateful to Barbara for so very much. As I recall, she went to Stanford for her surgeries, and then had one done in CO and the results weren't great. She was a wonderful woman; a humanitarian. I miss her to this day. (We form a lot of scar tissue around the spinal cord.) She was one of the very earliest patients and a special person.

My obstetrician was the first one to find a pituitary tumor, which turned out to be no big deal as medication kept it under control and it went away years and years later.

Then a young man, a neurologist...a very good one, and I really hit it off. He was a sunny CA boy; now we're both old and retiring. Anyway, he found this when no else had. I had SM, thus the reason for hardly moving. the cape-like pain, burning pain and so many other strange symptoms. I had been to clinic's top doctors', and remember that there were no computers then. Obviously I neded more help. I had a truly painful surgery on the spinal cord (this was in the 70's remember), followed by a neurosurgeon who knew what he was doing at Baylor downtown. He was using the latest techniques and attacked the SM from the brain step...which also needed a repair surgery. Bingo! It was done, and while recover wasn't exactly fun, the fact is that I recovered and lived with the damage that had done beforehand. Very painful damage I may add. Meds have been a problem all these years. Fentanyl wasn't the first drug to have been pulled out from us...as a matter of fact, looking back on it, I think we were pretty poorly treated.

There are excellent hospitals....if one can afford them. It's the exercise programs after surgery that are so important, and that's where the lesser expensive places fall down. Today's there's the computer....it didn't exist then.

Jen, I understand that you were doing well for 5-1/2 mos., and then healing (?) stopped. I don't pretend to know your life and I'm just happy for every step forward that you take. Who wouldn't be? I hope the above explanation helps somewhat. I'm now 73 and have Autoimmune Encephalitis and Congestive Heart Failure, and that's why I can't focus on the spine. Enough is enough, but there will probably be more. After all, I'm not young (73) and my body does have a lot of genetic defects. Yours, Lenora.
 
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Hi there. Apologies but I posted this before recently so am putting it now under this thread hoping someone can help. A few weeks ago I had a scan at the Medserena clinic in London on my neck. My images were past on to Dr. Gilete in Barcelona for him to analyse. He said to me via a "zoom call" that although my images weren't entirely normal he couldn't be certain this was the cause of my symptoms. So he recommended I should have some blood tests here in UK. The 4 tests were, Gluten, MCAD, thyroid and HPA Axis. Gluten and thyroid were done within the NHS. It seems that MCAD and HPA Axis can't be done on NHS. Can anyone please recommend who to contact regarding these other 2 tests. Any advice greatly appreciated. Thanks in advance.
 

Pyrrhus

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I wonder whether one under-appreciated issue related to cartilage destruction in craniocervical issues might be the role of glycine deficiency. Glycine is an amino acid that is essential for making or restoring cartilage. The average dietary intake of glycine is roughly 1.5-3 grams per day.[1] This is not enough for the body's needs, so the body makes its own glycine to make up for the inadequate dietary supply. However, the way that the body makes new glycine is tied to the folate cycle, which means that glycine production can be slowed down by anything that slows down the folate cycle, such as B12 deficiency.[2]

One publication meticulously calculated the average body's glycine production and the average body's need for glycine. This paper found that the average body makes about 2.5 grams of glycine per day, but that the body needs a total of about 15 grams of glycine per day to maintain the amount of cartilage we had in early adulthood.[3] Although this is only one paper, their results may be supported by the in vitro observation that higher amounts of glycine continue to stimulate large increases in collagen synthesis, as if the cells know that the current collagen level must be inadequate.[4] (cartilage is made of collagen)

References
[1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6627940/#idm139934315659552title
[2] https://pubmed.ncbi.nlm.nih.gov/19179765/
[3] https://pubmed.ncbi.nlm.nih.gov/20093739/
[4] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6153947/

NB: This post was adapted from the following post:
https://forums.phoenixrising.me/threads/is-your-hypothalamus-up-the-creek.81181/page-2#post-2294627
 

JenB

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Jen, I understand that you were doing well for 5-1/2 mos., and then healing (?) stopped.
No, that’s not what happened. After the initial post-op recovery period (~ 3-6 months) I felt really well and have been getting better every since. I had some problems last year with spinal fluid leaks, which has resolved. I was sick with COVID-19 for three month and put myself on fairly strict bedrest, so reconditioning has been a beast, but I am able to go on long walks and hike again.

Thanks for the kind words and well wishes, Lenora.
 

lenora

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Jen, I'm so glad that you found out what was really wrong with you. So many of us can spend a lifetime searching and it just doesn't work out.

I'm glad that you know and respect your own limits. Spinal fluid leaks are nothing to sneer at, are to be taken seriously and dealt with by the proper people. Healing can sometimes take years, but it does end and then we're hit with something like COVID-19, we do follow the best advice we can find. In that case, your own heart. Oh, that's what I'm working towards....long walks, again. I love being outdoors, so it's near...although I just fell and I'm sufering from it. I don't know if an MRI will be required, but right now an icea pack is on and I've taken two muscle relaxants (mild ones). Medicines have their place, and this is one of them.

Yes, it made me feel so good to hear that you finally found out what was wrong with you. I'll always wish you well, and I thank you for advancing one of our causes in the manner in which you have. May you be blessed as your return to health. Wishing you well, Lenora.
 
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I wonder whether one under-appreciated issue related to cartilage destruction in craniocervical issues might be the role of glycine deficiency. Glycine is an amino acid that is essential for making or restoring cartilage. The average dietary intake of glycine is roughly 1.5-3 grams per day.[1] This is not enough for the body's needs, so the body makes its own glycine to make up for the inadequate dietary supply. However, the way that the body makes new glycine is tied to the folate cycle, which means that glycine production can be slowed down by anything that slows down the folate cycle, such as B12 deficiency.[2]

One publication meticulously calculated the average body's glycine production and the average body's need for glycine. This paper found that the average body makes about 2.5 grams of glycine per day, but that the body needs a total of about 15 grams of glycine per day to maintain the amount of cartilage we had in early adulthood.[3] Although this is only one paper, their results may be supported by the in vitro observation that higher amounts of glycine continue to stimulate large increases in collagen synthesis, as if the cells know that the current collagen level must be inadequate.[4] (cartilage is made of collagen)

References
[1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6627940/#idm139934315659552title
[2] https://pubmed.ncbi.nlm.nih.gov/19179765/
[3] https://pubmed.ncbi.nlm.nih.gov/20093739/
[4] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6153947/

NB: This post was adapted from the following post:
https://forums.phoenixrising.me/threads/is-your-hypothalamus-up-the-creek.81181/page-2#post-2294627
Would you recommend then taking glycine and collagen to avoid craniocervical issues, avoid worsening them or improving them?
 

Learner1

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Would you recommend then taking glycine and collagen to avoid craniocervical issues, avoid worsening them or improving them?
https://www.medicalnewstoday.com/articles/collagen-foods#research


Some foods contain proteins called amino acids, which the body can use to make, or synthesize, collagen. Examples include:
Some essential amino acids that are important for collagen synthesis include:
  • glycine
  • proline
  • lysine
  • leucine
Certain vitamins and minerals also help with collagen synthesis
  • Vitamin C
  • Zinc
  • Manganese
  • Copper
 

lenora

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T Thanks, I was just checking the relationship (if any) between glycine & Diabetes 1. I've had the latter and am not prepared to deal with it with so many other things going on simultaneously. It would appear that it doesn't, so I'm willing to give it a try. I know I don't have Ehler-Danlos but some form of collagen disruption seems highly likely. We're still in the learning stages of that one, also.

Please don't think I'm ungrateful; that isn't the case at all, but I did have to find out if I heading into unchartered waters. I'll go ahead and try it. Thanks for your input. I know the reasons for my ME is a Syndrome, (which should be a disease by now)....Syringomyelea and another known as Arnold-Chiari Syndrome. If one has ACM, then SM always accompanies it. If it's just SM, then it's a disease of the spinal cord which may be caused by accidents, etc. The other is a genetic problem and is passed along from parent to child. Easier tests are now avialable, I'm sure. ME is a 3rd or 4th diagnosis and explains why I never properly got over my initial surgery. I know I was fortunate...my neurosurgeon attended regular conferences and kept abreast of the lastest news...when he was able. Having a well-informed Dr. is a must, and it's one that falls to each of us without fail.

What were the amounts referred to in the article? I'm rather fuzzy headed due to severe pain due to falling last night. Thank-you for your input. Yours, Lenora.
 

lenora

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can you guys join the facebook groups? i post mostly there now. they are many who have had surgeries already and many discussing less expensive options. there are cheaper surgeons out there. there is even a world expert in india who works at a public hospital who has offered surgery to 2 people i know of.

due to covid, henderson is doing long distance consults too.
Personally, I want nothing to do with FB and have been trying to get out of for years. I have very good reasons for not being a part of FB. If the Co. cut down its ways of tracking people, perhaps, but I dont' see that happening. As a matter of fact it's only getting worse. Yours, Lenora.
 
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Pyrrhus

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Would you recommend then taking glycine and collagen to avoid craniocervical issues, avoid worsening them or improving them?
For me, personally, I don't think that it would hurt to supplement with a reasonable dose of glycine, but I don't think anyone can make any formal recommendations given the early stage of research.

In addition to the resource that @Learner1 provided, you may want to peruse:
https://examine.com/supplements/glycine/

Hope this helps.
 

Daffodil

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Hi Daffodil,

Yes, there are neurosurgeons all over the country who can operate. As far as the cheapest, I'd be somewhat concerned. If they can earn more with patient A. or insurance Co. A., why would they lose money by being the cheapest for B? There are surgeons in Florida, Arizona, Colorado, Calif., Texas...almost everywhere you can think of who are now aware of this problem and know how to repair it. I would want plenty of references though. It used to be that The Chiari Institute in NYC and very few other hospitals could handle shunts or even Arnold-Chiari Malformation Surgery. Now most large cities most certainly have them. These doctors work hard, long hours...you definitely want someone experienced. Foreign doctors or doctors who have worked in foreign countries are generally the ones who can recognize the problems immediately. Why? Because in most cases a simple 'B' vitamin, or Folic Acid was missing in the mother during the first important months' of pregnancy. I never told my mother the cause, what's to be gained by making someone feel responsible? Actually it wasn't until we had a large no. of babies with anencephaly born in the Rio Grande Valley of Texas that experts were finally able to fill in the missing question. The absence of that 'B'vitamin during pregnancy. Syringomyelia is considered a neural tube defect, caused also by the missing vitamin and genetics. The same with Tethered Cord Syndrome.....apart from anencephaly I have the others, although I haven't had the Tethered Cord Syndrome repaired. Right now it isn't giving me symptoms, but who knows what the future holds?

I wish everyone better health, the stop of further decline and, hopefully, a life without pain. Yours, Lenora.
wow this is fascinating, i had no idea. i blamed my mom for not breastfeeding me years ago LOL. I dislike FB too and joined only for this....it was worth it by far
 

junkcrap50

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Is there any benefit or reason to include lateral bending and rotation to an Upright MRI of the cervical spine? Why is it not mentioned with flexion and extension?

(I'm getting an upright mri of the head and neck & want to know if I should ask to add lateral bending & rotation to the prescription.)
 

Pyrrhus

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A statement from a loose coalition of UK ME organizations:
https://www.meresearch.org.uk/forward-me-group-position-statement-re-spinal-surgery/

Excerpt:
ForwardME said:
Forward-ME is aware that radical surgery to address assumed spinal pathologies in patients with ME has become a topic of interest for some in the patient community.

The lack of biomedical research means that little is known about ME and possible subsets of the condition. Forward-ME’s position therefore is that we advocate for biomedical research in any and all areas that may be of benefit to patients, but we have strong concerns about the potential harm from risky treatment options that are not supported by robust scientific evidence and, further, we call for more research of high quality such as the DecodeME study.
 

Markus83

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Is there any benefit or reason to include lateral bending and rotation to an Upright MRI of the cervical spine? Why is it not mentioned with flexion and extension?
I have an Upright MRI next week and it seems to me the flexion/extension is not done, only rotation and lateral binding. I think flexion/extension would be the most important to see if the dens compresses the myelon. What do you think?
 

junkcrap50

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I have an Upright MRI next week and it seems to me the flexion/extension is not done, only rotation and lateral binding. I think flexion/extension would be the most important to see if the dens compresses the myelon. What do you think?
Interesting. Yes I would say flexion and extension is more important, because that's the way your neck moves the most. Also, most likely direction of instability for AAI & CCI.
 

lenora

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Hi @Markus83....I would have to agree with Junkcrap50 and say that the other two should be done. If you can't get a fast response from the Doctor's office (and who does these days), then I would call the radiology lab and have them call the office. Just double check that an answer is given. Yours, Lenora.