Hi @Pyrrhus....I don't know how I miss this, but I did. Do you have me on your list of notifications? The problem could have been at my end, I don't know. Anyway, Pyrrhus, I honestly (& I mean honestly) don't have time to read another newsletter today....right now I'm focusing on books that also contain recent research, and I'm wondering if you could once again put the name of the glycine supplement you're taking? I'm at at an age when what's left of the body has to seriously be preserved (not that I haven't tried for the past 30++ years). Anyway....when you have a moment, it would be appreciated. Thanks, @Pyrrhus. Yours, Lenora.
Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS
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Hi Pyrrhus.....I read the above and would like to caution about something not mentioned: That would be new or increased pain due to these cutting edge techniques. Sometimes we aren't given choices, as if it death is going to occur (as in my case in the 1970's) and sometimes that isn't the situation but we think we'll make things better. My advice is this: Don't count on the latter. At least until we get better pain improvement...which will come, things are changing much faster than we know by now. You do not want to live in horrible pain for the no. of years that I have. Always looking for something, still thinking you're somehow responsible...just how much can the body take? Then there's always the chance that whatever works for us for pain will be pulled from the market. I've seen it happen in my own case and it's not only maddening, the older we get the less energy we have to run around looking for new doctors and new answers.
Anything that sounds to good to be true, probably is. Let your wiser self be your guide. You can do good things to prepare yourself for surgery by prepping your body with good, wholesome food, vitamins and supplements (not overdone, though) and careful living. I wish you well as you go on with your lives. yours, Lenora.
Anything that sounds to good to be true, probably is. Let your wiser self be your guide. You can do good things to prepare yourself for surgery by prepping your body with good, wholesome food, vitamins and supplements (not overdone, though) and careful living. I wish you well as you go on with your lives. yours, Lenora.
Hi @lenora !
Actually, I haven't tried glycine supplements yet, but that is the very next thing on my list of things to try! I'm sure I'll share my experience after I try it for a couple of weeks.
If you want to make sure you get notices when a specific thread/discussion is updated, you can click on "Watch" towards the top right of the page, next to where it says "Jump to new". This means that the software is now "watching" that thread/discussion for you and should notify you when something is added to the thread/discussion. If it says "Unwatch" instead of "Watch", it means that you are already signed up to receive updates! Hope this helps.
Generally speaking, that's always wise words to live by!
Best wishes,
Pyrrhus
Actually, I haven't tried glycine supplements yet, but that is the very next thing on my list of things to try! I'm sure I'll share my experience after I try it for a couple of weeks.
If you want to make sure you get notices when a specific thread/discussion is updated, you can click on "Watch" towards the top right of the page, next to where it says "Jump to new". This means that the software is now "watching" that thread/discussion for you and should notify you when something is added to the thread/discussion. If it says "Unwatch" instead of "Watch", it means that you are already signed up to receive updates! Hope this helps.
Generally speaking, that's always wise words to live by!
Best wishes,
Pyrrhus
Hi @Pyrrhus.....Thanks for the news about accessing new info and for telling me that you're actually not taking glycine yet. Perhaps I'll wait until I get more reports back about how it's working, etc. I'm so behind in what's current; I feel that I've never been exposed to this world before. Trying to play catch-up really fast here!! Thanks. You're so polite, a pleasure to deal with. Yours, Lenora.
I'm still researching this issue as I'd like to suggest looking into this to my dr. I heard the Facebook group is more active with surgery info? Is that the beyond the measurement group or is there another group? I tried to find Jen brea's group but couldn't find it.
Yes, if the quality is good enough. It's best, however, to identify the neurosurgeon you most want to see and look into what imaging he (sorry, they are all men at present!) prefers. For example, Dr. Bolognese prefers a supine cervical MRI (3T is best but 1.5 will do) without flexion or extension. Others are more likely to want the upright MRI's with flexion/extension, although the resolution is not nearly as good.
See @jeff_w 's site MEchanicalBasis.org for contact info for Dr. Sunil Patel (Charleston, SC), Dr. Paolo Bolognese (Long Island, NY) and Dr. Vicenç Gilete (Barcelona, Spain). Others that people speak well of for craniocervcial fusion and Chiari, especially in patients with connective tissue disorders, are Fraser Henderson, MD (Chevy Chase, MD, used to be on @jeff_w 's site, not sure why Jeff removed his info), and Justin Virojanapa, DO (Cincinatti, OH, he trained under Dr. Bolognese).
See @jeff_w 's site MEchanicalBasis.org for contact info for Dr. Sunil Patel (Charleston, SC), Dr. Paolo Bolognese (Long Island, NY) and Dr. Vicenç Gilete (Barcelona, Spain). Others that people speak well of for craniocervcial fusion and Chiari, especially in patients with connective tissue disorders, are Fraser Henderson, MD (Chevy Chase, MD, used to be on @jeff_w 's site, not sure why Jeff removed his info), and Justin Virojanapa, DO (Cincinatti, OH, he trained under Dr. Bolognese).
Hi @valentinelynx ,
Thank you for the info. I'm currently looking into dr. Bolgonese as my area doesn't have an upright mri machine and the nearest is one state away which would mean I'd need to quarantine to get to and from. My sister is also interested in a scan since she is in mass and can't get anything out of state covered.
I'm hoping to get info about the surgery recovery and how many M.E. patients recover.
I'm hoping I don't need surgery even if they see something. But if we know at least we could monitor it and maybe do some PT to strengthen around the area.
I didn't realize because my brain was so bad when I got sick but I had a major concussion about a year before my viral illness kicked in. Then I lived in a moldy apartment so I was destined for issues. I've also had about 3 major concussions and a couple minor ones. Also I've got mixed connective tissue disorder so I could have loose ligaments regardless.
I just hope my Dr takes this request seriously. He's been really good but has brushed off my high growth hormone as being normal for me even though I am having hand and foot growth that is unusual...
Thank you for the info. I'm currently looking into dr. Bolgonese as my area doesn't have an upright mri machine and the nearest is one state away which would mean I'd need to quarantine to get to and from. My sister is also interested in a scan since she is in mass and can't get anything out of state covered.
I'm hoping to get info about the surgery recovery and how many M.E. patients recover.
I'm hoping I don't need surgery even if they see something. But if we know at least we could monitor it and maybe do some PT to strengthen around the area.
I didn't realize because my brain was so bad when I got sick but I had a major concussion about a year before my viral illness kicked in. Then I lived in a moldy apartment so I was destined for issues. I've also had about 3 major concussions and a couple minor ones. Also I've got mixed connective tissue disorder so I could have loose ligaments regardless.
I just hope my Dr takes this request seriously. He's been really good but has brushed off my high growth hormone as being normal for me even though I am having hand and foot growth that is unusual...
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I’ve been diagnosed with CCI and AAI by Dr Bolognese and Dr Henderson. I just finished talking with Henderson this morning.
Most of my measurements are normal (CXA is borderline), but the translational BAI is 6mm (skull sliding over spine, CCI)
I also have 12.8 mm translational motion of C1 on C2 (AAI), where it’s considered abnormal if it’s over 3.5 mm.
I have significant instability at C3-C4 and C5-C6 but I was recommended to not fuse those until the future. I wonder if I can do prolotherapy for those since they are easier to reach than C1-C2.
I’m going with Henderson for my fusion because I have pretty severe EDS and feel most comfortable with him since he only sees patients with a confirmed genetic connective tissue disorder. He wants me to do another upright MRI because it’s unclear if I should do C0-C2 or C1-C2 and extend it up later.
He rarely fuses C0-C1 during the first surgery from what I’ve heard (to preserve range of motion, and to reduce the chance of sub failure ). I’m not sure what to think yet but 6mm of movement of the skull over the spine sounds like a lot? My understanding is >2 mm is abnormal and >4 is surgical
It’s also complicated because I have Eagles Syndrome, Carotid sinus hypersensitivity syndrome, Median Arcuate Ligament Syndrome, Superior Mesenteric Artery Syndrome, Nutcracker Syndrome, May Thurner Syndrome, and Pelvic Congestion Syndrome. So I need to see a vascular surgeon as well. The compression disorders have gotten so bad that my abdomen distends 11” in 20 min if I sit! It causes knife-like pain as I go from flat stomach to looking 6 months pregnant.
It’s worth noting that both Bolognese and Henderson were great and definitely know a ton about not only AAI and CCI but also all the related conditions. I’d recommend either one of them. I just felt that Henderson was a better fit for me.
Most of my measurements are normal (CXA is borderline), but the translational BAI is 6mm (skull sliding over spine, CCI)
I also have 12.8 mm translational motion of C1 on C2 (AAI), where it’s considered abnormal if it’s over 3.5 mm.
I have significant instability at C3-C4 and C5-C6 but I was recommended to not fuse those until the future. I wonder if I can do prolotherapy for those since they are easier to reach than C1-C2.
I’m going with Henderson for my fusion because I have pretty severe EDS and feel most comfortable with him since he only sees patients with a confirmed genetic connective tissue disorder. He wants me to do another upright MRI because it’s unclear if I should do C0-C2 or C1-C2 and extend it up later.
He rarely fuses C0-C1 during the first surgery from what I’ve heard (to preserve range of motion, and to reduce the chance of sub failure ). I’m not sure what to think yet but 6mm of movement of the skull over the spine sounds like a lot? My understanding is >2 mm is abnormal and >4 is surgical
It’s also complicated because I have Eagles Syndrome, Carotid sinus hypersensitivity syndrome, Median Arcuate Ligament Syndrome, Superior Mesenteric Artery Syndrome, Nutcracker Syndrome, May Thurner Syndrome, and Pelvic Congestion Syndrome. So I need to see a vascular surgeon as well. The compression disorders have gotten so bad that my abdomen distends 11” in 20 min if I sit! It causes knife-like pain as I go from flat stomach to looking 6 months pregnant.
It’s worth noting that both Bolognese and Henderson were great and definitely know a ton about not only AAI and CCI but also all the related conditions. I’d recommend either one of them. I just felt that Henderson was a better fit for me.
****Glass House, I'm sorry that you have received the many diagnoses that you have. I, myself, had very early surgery for Syringomyelia and five years later Arnold-Chiari Malformation. The surgery of today is markedly different from my first one, and the Chiari surgery, once one passed the strange feeling of the lower skull moving, was a fairly easy one to recover from. (That's about 10 days to 2 wks.) There was little pain involved, at least compared to my first surgery at which time there was extreme pain. I had done severe damage by sneezing with my arm in the hair (brushing my hair) and all the nerves down one side of my body were affected. To this day, they still are....just not as much, say 5 days of the week.
I'm convinced that there are many different types of EDS, and a lot of us share some of the symptoms without being diagnosed. Dr. Bolognese had just started when I was first aware of him. This has been many years ago, and I'm glad that he is able to help you.
Again, personally, I have so many diagnoses that it would be overwhelming to dwell on each one. I'm an old woman now and most of them have never given me the trouble predicted. I sincerely hope the same is true in your case. Yours, Lenora
I'm convinced that there are many different types of EDS, and a lot of us share some of the symptoms without being diagnosed. Dr. Bolognese had just started when I was first aware of him. This has been many years ago, and I'm glad that he is able to help you.
Again, personally, I have so many diagnoses that it would be overwhelming to dwell on each one. I'm an old woman now and most of them have never given me the trouble predicted. I sincerely hope the same is true in your case. Yours, Lenora
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My insurance company is giving me trouble approving my Upright MRI. It's going to a review board for approval. Does that mean prior authorization? They never mentioned it when I called searching for a in-network upright MRI. Any idea why it's hard to approve an MRI? I would think those are commonly done.
I don't have text-book CCI/AAI symptoms like POTS, but have overlap with other symptoms. Plus I have terrible neck pain and occipital headaches and history of head trauma. My doctor mentioned how 147 cases have been found in ME/CFS patients in his referral but I don't think I can make the argument for approval based on ME/CFS.
Anyone have any ideas on how I can increase my chances for approval?
I don't have text-book CCI/AAI symptoms like POTS, but have overlap with other symptoms. Plus I have terrible neck pain and occipital headaches and history of head trauma. My doctor mentioned how 147 cases have been found in ME/CFS patients in his referral but I don't think I can make the argument for approval based on ME/CFS.
Anyone have any ideas on how I can increase my chances for approval?
Hello @junkcrap50......I would think your best chance of approval would have to come from the doctor himself. Call the office, explain the situation and ask his nurse or nurse practioner to call you back with the details. Note: The staff may be capable of making the decision, but the best chance probably comes from the doctor's referral.
I found this can take a week to two weeks to accomplish, and that was a long, long time ago. The easiest way to get an answer is to go through the Patient Portal, if you have one. Since you've already been to this doctor and he must have a busy practice, you probably do. It's very, very hard to connect with a live person these days...as you know.
I wish you good fortune in your endeavor. Medicine has changed so much since my early days of getting MRI's. I've never had a standing one, could obtain what, but I had surgeries so many years ago....one caveat: Please ask the doctor how other patients are doing and what their pain levels are. If you don't have nerve damage, then you should be well on your way. These matters are often very subtle, keep at it. I would think your history of head trauma alone would be enough. I wish you well. Yours, Lenora.
I found this can take a week to two weeks to accomplish, and that was a long, long time ago. The easiest way to get an answer is to go through the Patient Portal, if you have one. Since you've already been to this doctor and he must have a busy practice, you probably do. It's very, very hard to connect with a live person these days...as you know.
I wish you good fortune in your endeavor. Medicine has changed so much since my early days of getting MRI's. I've never had a standing one, could obtain what, but I had surgeries so many years ago....one caveat: Please ask the doctor how other patients are doing and what their pain levels are. If you don't have nerve damage, then you should be well on your way. These matters are often very subtle, keep at it. I would think your history of head trauma alone would be enough. I wish you well. Yours, Lenora.
Do any of you know where I can get an upright flexion MRI to check for CCI? I live in the San Francisco Bay Area.
I had an upright brain and cervical MRI here: https://visionmri.com San Jose. I am sure they can do flexion and extension if you have the Rx.
Thank you Jyoti.
Im starting to show symptoms of trigeminal nueralgia. Could cci cause this? If i had surgery could they correct both?
Should i contact a cci surgeon and mention my possible tn? I see a neuro in a couple weeks but he isnt a neuro surgeon. The tn forums say you need to see a tn surgeon as its commonly overlooked or not known how to diagnose.
If anybody is on the cci facebook can you search for trigeminal neuralgia comorbid? I have been trying to get in for a month or more.
Should i contact a cci surgeon and mention my possible tn? I see a neuro in a couple weeks but he isnt a neuro surgeon. The tn forums say you need to see a tn surgeon as its commonly overlooked or not known how to diagnose.
If anybody is on the cci facebook can you search for trigeminal neuralgia comorbid? I have been trying to get in for a month or more.
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@bensmith You can definitely bring it up with your neuro, but I’d hold off on the thought CCI surgery would fix your issues. I haven’t heard that covid causes collagen loss yet. Maybe it does, but I’d wait on that one. Surgery is a desperate measure. I know you are desperate, but science still needs to figure out what covid is doing to people.
I doubt it. If you consider this picture, you can see that the trigeminal nerve is not near the cranio-cervical junction:
Unfortunately, there is no medical consensus on the cause of trigeminal neuralgia, but both Herpes Simplex Virus (HSV) and Varicella Zoster Virus (VZV) are known to establish permanent residence in the trigeminal nerve. I don't want to take this thread off-topic, but have you heard of any patients in the Trigeminal Neuralgia support groups who have tried anti-herpesvirus drugs like Valtrex?
Unfortunately, there is no medical consensus on the cause of trigeminal neuralgia, but both Herpes Simplex Virus (HSV) and Varicella Zoster Virus (VZV) are known to establish permanent residence in the trigeminal nerve. I don't want to take this thread off-topic, but have you heard of any patients in the Trigeminal Neuralgia support groups who have tried anti-herpesvirus drugs like Valtrex?
I think the trigeminal nerve can be irritated by poor jaw position/TMJ. If you have neck posture issues/CCI there is a decent chance that is messing with your jaw posture which many people have bad jaw posture already.
@bensmith do you have symptoms of Temporomandibular Dysfunction?
@bensmith do you have symptoms of Temporomandibular Dysfunction?
@Strawberry i just wondered if comorbid, but as @Pyrrhus points out its not close. For some reason i thiught it was.
I did have these issues start with covid 1, before i came down with pem/cfs. But again no proof there.
Ty @Pyrrhus that is very interesting, i will ask.
Here is an article on the subject.
https://www.aaopt.org/detail/knowle...stations-herpes-simplex-virus-female-siblings
@sb4 i have a bad history of jaw issues. It got worse with covid, i asismed it was jusr covid things. But maybe its related. My jaw pain actaully decreased but it is something to consider thank you.
I did have these issues start with covid 1, before i came down with pem/cfs. But again no proof there.
Ty @Pyrrhus that is very interesting, i will ask.
Here is an article on the subject.
https://www.aaopt.org/detail/knowle...stations-herpes-simplex-virus-female-siblings
@sb4 i have a bad history of jaw issues. It got worse with covid, i asismed it was jusr covid things. But maybe its related. My jaw pain actaully decreased but it is something to consider thank you.
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