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

jeff_w

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I've thought of testing for Chiari and P3C (positional cervical cord compression). I hadn't heart of the thered Cord Syndrome. The testing is an issue since I have no idea who to look for to test for it. I did call johns hopkins Chiari center and they said to just use any MRI and if I have it come see them, which was very shocking. I had talked to somebody who said they had Chiari and used a positional MRI with Hopkins Chiari center.
Places like Johns Hopkins and the Mayo Clinic are considered top notch for many conditions. But Hopkins isn't great for Chiari.

Some neurosurgeons will be capable of identifying Chiari, but very few can do the decompression surgery properly. Also, most of them will completely miss the Craniocervical Instability (CCI) that often comes in addition to Chiari. The CCI needs to be surgically fixed as well as the Chiari.

There are just a handful of Chiari/CCI/TC neurosurgeons in the world. They specialize in patients with these conditions, they publish research, and they innovate. Dr. Henderson, Dr. Bolognese, and Dr. Sandhu are in the USA. Dr. Gilete is in Spain.
 

jeff_w

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I just found this great research article. It discusses three patients with severe ME/CFS whose symptoms, including POTS, improved after cervical spine surgery. It suggests a direct link between brain stem compression and ME/CFS, and how this can be fixed with cervical spinal surgery.

All three of them had a low clivo-axial angle. My clivo-axial angle met the surgical criteria (angle of less than 135 degrees). All three of these severe ME/CFS patients also had clivo-axial angles of less than 135 degrees.

I didn't have that exact surgery that they had (disc decompression), but one of them also had a fusion. I had a two level fusion surgery for craniocervical instability. The similarities are strong: The source of their severe ME/CFS was neurological, and the locus was in the cervical spine. Also, their POTS and other ME/CFS symptoms resolved with surgery, just as mine have.

Here's the link:

Improvement of severe myalgic encephalomyelitis/chronic fatigue syndrome symptoms following surgical treatment of cervical spinal stenosis
 
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@jeff_w Yes, there is a thread for this study and I had wondered if they are similar or related to what you have.

Would the same set of upright flexion extension MRIs that you have listed to ask for document this condition too then?

I am keeping a list of imaging to request based on information from you, @bombsh3ll and from a Chiari / scoliosis website. I’m not sure which overlap with each other and might be redundant, although I assume the mri center will tell me:

MRI of the skull and cervical spine, upright with flexion-extension, and in neutral
MRIs of the craniocervical junction in left and right lateral rotation.
Thoracic spine MRI
Lumbosacral spine MRI (if possible in supine and prone position)
Scoliogram x-ray of the entire spine on one film, profile and front view

(I have scoliosis so, I would like to have my whole spine looked at, just in case there are issues in other areas)
 
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outdamnspot

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I match some of the symptoms of Chiari, though these could plausibly just be attributed to severe CFS. Is it possible to have it without the chronic neck pain/headaches?
 
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I just found this great research article. It discusses three patients with severe ME/CFS whose symptoms, including POTS, improved after cervical spine surgery. It suggests a direct link between brain stem compression and ME/CFS, and how this can be fixed with cervical spinal surgery.

All three of them had brain stem compression, which is measured by the clivo-axial angle. My clivo-axial angle met the criteria for brain stem compression and need for surgery (angle of less than 135 degrees). All three of these severe ME/CFS patients also had clivo-axial angles of less than 135 degrees.

I didn't have that exact surgery that they had (disc decompression), but one of them also had a fusion. I had a two level fusion surgery for craniocervical instability. The similarities are strong: The source of their severe ME/CFS was neurological, and the locus was in the cervical spine. Also, their POTS and other ME/CFS symptoms resolved with surgery, just as mine have.

Here's the link:

Improvement of severe myalgic encephalomyelitis/chronic fatigue syndrome symptoms following surgical treatment of cervical spinal stenosis
Thank you very much for sharing this information. We may need you to cover this condition here.

This condition related to structural issues I can't decide if I find this more or less appealing of a problem. I find things like surgery to be quite scary since I'm never sure if the diagnosis is correct and the changes are not very reversible.

I do have fatigue no doubt, but I also have muscle pain all over my body. I believe the muscle pain started in my neck though. This could be because it was a problem with my neck, but not necessarily at all.

I thought I had it figured out before you brought up these structural issues which I had considered in the past.

It seemed as though it was either the metabolic trap that Ron Davis and Mr. Phair talks about or the autoimmune that Alan Light talks about.

They said they found antibodies to adrenergic and muscarinic receptors in people with ME/CFS. So, I was thinking if I got these tested it would confirm that I had an autoimmune disease. I suspect this would not happen with a structural problem as the cause, though I can't say for sure and I think you never got that testing.

Dr. Alan Light also detected mitochondrial expression problems. I wonder how the structural pathology worked in your case and whether it went down the mitochondrial level. I suppose it is possible that a down regulation of the autonomic nervous system from compression could signal signal to mitochondria to down regulate energy.

Did you have muscle pain all over your body and unusual nerological symptoms or just fatigue? Also, my face seems to go slightly numb and tingle below the eyes randomly, but it definitely used to happen when I lay down and press my neck against the pillow and still does many times I notice. I also have tinnitus and vision shakes and many symptoms.

So, if I want to find out if I have Chiari or tethered cord I have to find Dr. Henderson, Dr. Bolognese, and Dr. Sandhu for diagnosis? I am in the USA.

Also, I'm getting more and more fatigued and more and more systems of my body are malfunctioning and I'm thinking I may need to go on disability soon and stop working. I've been working with ME/CFS for 10 years. I still have some kind of private insurance, but if I leave the employer I guess I'll be on medicare.

Do these doctors also check for and deal with the Positional Cervical Cord Compression (P3C) as it is called?
 

jeff_w

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Would the same set of upright flexion extension MRIs that you have listed to ask for document this condition too then?
Yes.

The only problem will be the MRI written report. Most radiologists who work for MRI centers are very decent at finding tumors and obvious injuries. But the neurosurgical issues we're looking for are more subtle and rare, and many radiologists aren't trained to recognize them at all (the clivo-axial angle, etc.). They'll often spot and note "cervical stenosis" if it's there, but even that can be hit or miss.

So you'll find that specialist neurosurgeons won't ask for the written report. They'll ask you to send in the images themselves.

I am keeping a list of imaging to request based on information from you, @bombsh3ll and from a Chiari / scoliosis website. I’m not sure which overlap with each other and might be redundant, although I assume the mri center will tell me:
Awesome. Another really helpful resource for these issues is a Facebook group. It's called "Beyond the Measurement." You'll see thousands of people who have dealt with these issues, and you'll hear about their MRI experiences, neurosurgery experiences, what worked, what didn't, etc. Patients of Sandu, Henderson, Bolognese, Gilete are all there. It has about 5,000 members.

But as for relying on an MRI center to know what imaging you need, I would never do that, because of the problem listed above. It's kind of like expecting a general practitioner to diagnose POTS on your first visit. They aren't trained to do it, and they'll probably give you incorrect info or blow you off.

MRI of the skull and cervical spine, upright with flexion-extension, and in neutral
MRIs of the craniocervical junction in left and right lateral rotation.
Thoracic spine MRI
Lumbosacral spine MRI (if possible in supine and prone position)
Scoliogram x-ray of the entire spine on one film, profile and front view

(I have scoliosis so, I would like to have my whole spine looked at, just in case there are issues in other areas)
I think this is a really good and thorough plan.

If you have scoliosis, you're more likely to have CCI, Chiari, etc., because scoliosis often goes along with connective tissue problems. And connective tissue problems are the number one risk factor for these neurosurgical problems.
 
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jeff_w

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I match some of the symptoms of Chiari, though these could plausibly just be attributed to severe CFS. Is it possible to have it without the chronic neck pain/headaches?
Yes.

You could also have craniocervical instability, which has some symptom overlap with Chiari.
 
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I had cervical stenosis diagnosed last year when I had increased pain and numbness down right arm plus some other balance symptoms. MRI (lying down) showed spiny protusions which I understood could be age related and cervical stenosis but I was told that it wasn't bad enough to operate on. I'm in my mid 60s and so have to take general care. Attended a pain management course last year and since then being careful to limit activities. That and gentle physio has improved my numbness.

I read this article with interest and know that my mother had neck problems for years along with arthritis and anklosysing spondylitis. My symptoms of ME / CFS developed after a virus infection. I live in the UK. I feel quite confused about whether this is worth investigating further or not especially as NHS works in a different way. It seems to be a contributing factor rather than a cause?
 

jeff_w

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Thank you very much for sharing this information. We may need you to cover this condition here.
You're welcome. I'm so glad to share.

I thought I had it figured out before you brought up these structural issues which I had considered in the past.

It seemed as though it was either the metabolic trap that Ron Davis and Mr. Phair talks about or the autoimmune that Alan Light talks about.
It could be that this metabolic trap occurs after our nervous system struggles and ultimately fails to adapt to the structural compression. Then we go into metabolic trap / dauer / hibernation / resource-conservation mode.

There is also peer-reviewed research that discusses how the autonomic nervous system and immune system work in tandem. So, a disrupted autonomic nervous system, due to structural compression, would in theory disrupt the immune system.

In my own experience, I had mast cell activation syndrome (MCAS) go away after the application of a halo brace. MCAS is generally considered to be an immune system problem (autoimmune). My own experience suggests that fixing my autonomic nervous system eliminated the MCAS.

The halo brace was placed prior to surgery, and it mimicked what the surgery would do. Once the halo brace was on, it relieved my brain stem compression, and my POTS and MCAS and PEM were gone. They have remained gone post-surgery.

They said they found antibodies to adrenergic and muscarinic receptors in people with ME/CFS. So, I was thinking if I got these tested it would confirm that I had an autoimmune disease. I suspect this would not happen with a structural problem as the cause, though I can't say for sure and I think you never got that testing.
These antibodies, too, could be due to a structural compression. The data shows that these two specific antibody receptors are related to POTS. It's been well-established that brain stem compression can cause POTS, and that relieving this compression through surgery relieves the POTS.

So, if structural compression is causing POTS by disrupting the autonomic nervous system, the immune system could try to "solve the problem" by over-producing POTS-related antibodies. See peer-reviewed research on the connection between the autonomic nervous system and the immune system.

I had a "borderline" antibody result with the muscarinic receptors. I was negative for the adrenergic receptor antibodies.

Dr. Alan Light also detected mitochondrial expression problems. I wonder how the structural pathology worked in your case and whether it went down the mitochondrial level. I suppose it is possible that a down regulation of the autonomic nervous system from compression could signal signal to mitochondria to down regulate energy.
That is how I see it. (I bolded your words.)

Did you have muscle pain all over your body and unusual nerological symptoms or just fatigue?
I had widespread muscle pain as well as severe POTS and post exertional malaise.

Also, my face seems to go slightly numb and tingle below the eyes randomly, but it definitely used to happen when I lay down and press my neck against the pillow and still does many times I notice.
That positional component strongly suggests a problem with your cervical spine.

I also have tinnitus and vision shakes and many symptoms.
Those are classic Chiari symptoms.
 
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jeff_w

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So, if I want to find out if I have Chiari or tethered cord I have to find Dr. Henderson, Dr. Bolognese, and Dr. Sandhu for diagnosis? I am in the USA.
Yes. Unfortunately, a lot of people go to local neurosurgeons, who aren't specialists in these complex conditions.

They usually don't end up with good results, because most commonly, the non-specialist neurosurgeon will miss the problem completely. The neurosurgeon will then tell the person they're "fine," and sometimes even tell person that they're having "psychosomatic problems."

Less commonly, the non-specialist neurosurgeon will actually find the real problem and operate, but the results are often non-ideal. And then these people will end going to a specialist neurosurgeon anyway down the line, for a revision surgery.

Also, I'm getting more and more fatigued and more and more systems of my body are malfunctioning and I'm thinking I may need to go on disability soon and stop working.
So sorry to hear this. I understand. I pushed myself through school and sports until I was bedridden and fully disabled.

I've been working with ME/CFS for 10 years. I still have some kind of private insurance, but if I leave the employer I guess I'll be on medicare.
10 years is a long time. Sorry to hear you're getting more severe. Resting was the only thing that reliably helped prevent me from getting worse. Looking back, I can see that resting flat in bed caused the least amount of neurological compression.

But I was still symptomatic at rest. Even watching TV while lying in bed would cause PEM.

Do these doctors also check for and deal with the Positional Cervical Cord Compression (P3C) as it is called?
Yes. If the neck is hypermobile/unstable, it will move in ways that compress the cervical spinal cord. The flexion/extension/rotation MRIs will show these problems.
 
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Ben H

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@jeff_w - this is amazing. I remember your posts from some years ago and you were so sick, I was worried about you and then you seemed to disappear for a long time and I often wondered how you were.

This must feel like a miracle for you. I am so happy for you! :)

I'd seen this thread but never took the time to look at it until yesterday.

Thanks so much for posting all this information and thanks to @Shawn for starting the thread! :thumbsup:

- @Ben H , I'm tagging you here because I believe you have been as sick as Jeff was, and this might be of interest to you
Thank you Mary-I’ll try and take a look at this later. Im glad Jeff is doing much better :)


B
 

outdamnspot

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Yes.

You could also have craniocervical instability, which has some symptom overlap with Chiari.
Do you have any advice on trying to broach this topic with a regular GP? My lists of symptoms are extensive and very severe, but all my tests have been 'normal' so far, so I don't really have much luck with doctors.
 

jeff_w

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Do you have any advice on trying to broach this topic with a regular GP?
I think it really depends on the type of relationship you have with your GP. Is your GP someone who will listen to you? Some GPs are great and will listen. If your GP will order an upright flexion-extension MRI, then you can send those images to the specialist neurosurgeons.

Sadly, I've found that many doctors are dismissive of any idea that is new to them. They dismiss new ideas no matter how much actual science is behind the idea. It seems almost like a reflex, with their lack of curiosity. And their lack of curiosity is part of why ME/CFS knowledge advances so slowly (along with political/funding issues, too).

Anyway, you could try bringing your GP the research articles linked to this thread. But, some GPs get really offended by patients who bring in academic research articles, due to their own ego problems.

My lists of symptoms are extensive and very severe, but all my tests have been 'normal' so far, so I don't really have much luck with doctors.
I'd try to build a good relationship with a GP who listens, who cares, and who really wants to help you. It seems that those are the types of doctors who will be open to updating their knowledge base.
 
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Mary

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Dr. J. Patrick Johnson at Cedars Sinai, in Los Angeles CA, was able to find my CCI and knew how to fix it. He's not a specialist in this, however, and he's more hit-or-miss from what I've seen.
@jeff_w - when you say hit-or-miss, do you mean in diagnosing CCI, or in doing the surgery, or both? He's the one doctor on your list who it would be feasible for me to see because of his location.

I don't know if I fit any critieria for Chiari or CCI. I have moderate ME/CFS - PEM hits like clockwork the next day if I exceed my activity limit (3-1/2 to 4 hours of light activity with rest breaks); also, intense mental activity can cause PEM. But I only have mild POTS, if at all. I've never been tested. I can walk and drive, but if I stand in one place without moving for more than 5 minutes I start to get antsy and if I get up to 10 minutes I try very hard to find a place to sit. I'm not fainting but I feel very strongly that I need to sit.

I have no trouble reading or watching TV (I know, I'm very fortunate in a lot of ways!)

The only thing is I have a constant tightness in the back of my neck, like you would get from stress, but it's always there, no matter how relaxed I am. There's no pain.

Does this sound like it could be anything to you, or perhaps at least worth checking out? FWIW, my ME/CFS onset was extremely slow - 13 years from when my health started to go south to when I started crashing.

Thank you for your apparently endless patience in answering all of our questions! :)
 

jeff_w

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I spent a long time trying to rule out Chiari since the known symptoms are such a good fit to my own. I had brain, spine and flexion/extension neck MRIs done. The images were evaluated by Dr. Greenfield, another Chiari specialist. According to him, my cerebellar tonsils are slightly lower than normal, but it's very unlikely that I have Chiari. Neck MRI came back clear in every position except mild disc herniation.

From upright neck:
Hi @Dmitri -

Dr. Greenfield is considered a Chiari specialist. But if you join some Chiari groups, you’ll find that he regularly misses issues and leaves a lot to be desired. I’m not bashing him, I’m just being very honest.

Your low lying tonsils, which Dr. Greenfield at least acknowledged, are a red flag for craniocervical instability and tethered cord syndrome. Dr. Greenfield is known for routinely missing those issues.

Also, low lying tonsils are sometimes called "Chiari Zero." They're still a genuine structural abnormality that can cause full-blown Chiari symptoms in many people. Join some Chiari/CCI groups on Facebook, specifically “Beyond the Measurement.” You’ll see many people diagnosed with low lying tonsils, who have full blown Chiari symptoms and respond to surgery. They often have CCI as well, though not all do.

You said that your symptoms are a very good match for Chiari. So you should seriously keep pursuing this. You've even already been diagnosed with a structural abnormality. Don't give up.

Dr. Greenfield has disappointed many people who later ended up seeing a specialist and got their lives back.

I’d recommend sending your imaging to Dr. Henderson or Dr. Bolognese. Or Dr. Sandhu or Dr. Gilete, as well. Good luck with this.
 
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perrier

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I just found this great research article. It discusses three patients with severe ME/CFS whose symptoms, including POTS, improved after cervical spine surgery. It suggests a direct link between brain stem compression and ME/CFS, and how this can be fixed with cervical spinal surgery.

All three of them had a low clivo-axial angle. My clivo-axial angle met the surgical criteria (angle of less than 135 degrees). All three of these severe ME/CFS patients also had clivo-axial angles of less than 135 degrees.

I didn't have that exact surgery that they had (disc decompression), but one of them also had a fusion. I had a two level fusion surgery for craniocervical instability. The similarities are strong: The source of their severe ME/CFS was neurological, and the locus was in the cervical spine. Also, their POTS and other ME/CFS symptoms resolved with surgery, just as mine have.

Here's the link:

Improvement of severe myalgic encephalomyelitis/chronic fatigue syndrome symptoms following surgical treatment of cervical spinal stenosis
Thanks Jeff for this most interesting link. I note that in the symptoms, the 3 patients did not have GI distress. May I ask, did you suffer from severe GI problems?
 

Dmitri

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Hi @Dmitri -

Dr. Greenfield is considered a Chiari specialist. But if you join some Chiari groups, you’ll find that he regularly misses issues and leaves a lot to be desired. I’m not bashing him, I’m just being very honest.

Your low lying tonsils, which Dr. Greenfield at least acknowledged, are a red flag for craniocervical instability and tethered cord syndrome. Dr. Greenfield is known for routinely missing those issues.

Also, low lying tonsils are sometimes called "Chiari Zero." They're still a genuine structural abnormality that can cause full-blown Chiari symptoms in many people. Join some Chiari/CCI groups on Facebook, specifically “Beyond the Measurement.” You’ll see many people diagnosed with low lying tonsils, who have full blown Chiari symptoms and respond to surgery. They often have CCI as well, though not all do.

You said that your symptoms are a very good match for Chiari. So you should seriously keep pursuing this. You've even already been diagnosed with a structural abnormality. Don't give up.

Dr. Greenfield has disappointed many people who later ended up seeing a specialist and got their lives back.

I’d recommend sending your imaging to Dr. Henderson or Dr. Bolognese. Or Dr. Sandhu or Dr. Gilete, as well. Good luck with this.
I found out about Dr. Greenfield in Chiari groups a year back when he had positive appraisal, I was thrilled to know that he even accepted Medicaid. It sounds like many are having second thoughts about him now. When I read the same message boards, the reception to Dr. Bolognese was very controversial and mixed, to some he was a miracle worker, to others he was a butcher.

I'd like to have piece of mind and a final verdict on whether I have Chiari, if those doctors should offer affordable MRI review services. As I mentioned, the symptoms like the pressure headache, neck pain/stiffness, tinnitus ringing in ears, orthostatic headaches and EDS-like bone structure fit the profile of Chiari and/or CCI so well, but at this point, cause and effect are so muddled, it seems like my craniocervical symptoms are very dependent on what goes on in the digestive system and peripheral nervous system rather than the other way around.

I didn't get officially diagnosed with those structural abnormalities, he just explained his reasoning when I specifically asked about them, which was, in short, that my tonsils are low, but not low enough and my odontoid bone; while retroflexed, is not retroflexed enough. He also brought up my EDS-like symptoms as a positive clue, but his final opinion was that the possibility of decompression surgery treating my symptoms is extremely low and not worth pursuing.
 

jeff_w

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I found out about Dr. Greenfield in Chiari groups a year back when he had positive appraisal, I was thrilled to know that he even accepted Medicaid. It sounds like many are having second thoughts about him now.
Yep.

The more time that goes by, the more data we have to assess the strengths and weaknesses of these neurosurgeons. There was enough negative patient input for me to quickly rule out Greenfield, although I had seriously considered him initially.

When I read the same message boards, the reception to Dr. Bolognese was very controversial and mixed, to some he was a miracle worker, to others he was a butcher.
Yes, I’m aware that Dr. Bolognese has been considered controversial by some people, especially a few years back. I was initially wary of him until I did literally thousands of hours of research. @Silencio expressed some concerns and might want to check out this post.

Dr. Henderson is essentially without controversy and most patients consider him to be the “safe gold standard” for CCI/Chiari surgery. Dr. Henderson has also broken a lot of important ground with his research publications.

I ultimately chose Dr. Bolognese though, after literally thousands of hours of careful, painstaking research. I preferred his innovative fusion method over Dr. Henderson’s standard fusion method. I also had the opportunity to interact with thousands of patients, and I found Dr. Bolognese to be the most consistently excellent and the best choice for what I wanted.

Dr. Bolognese takes the most severe cases that Henderson, Greenfield, and Sandhu won’t touch. I was severe, but not critically so, and Henderson would have been my second choice.

As for my own surgery experience, I ended up being very pleased and impressed with Dr. Bolognese — and I’m pretty critical of doctors.

Problem in your case: Dr. Henderson and Dr. Bolognese don’t take Medicaid. They do accept Medicare and other insurance. I had to get on my dad’s insurance plan in order to get any help.

Is there any possible way you could get on a family member’s insurance? You’re still under 26 years old, which makes this possible if your family is able and /or willing. If not, you also might want to look into Dr. Sandhu. He might take Medicaid.

I’d like to have piece of mind and a final verdict on whether I have Chiari, if those doctors should offer affordable MRI review services.
Dr. Gilete in Spain will review it for a very reasonable fee, he might even do it for free.
Just upload your images for him. His turnaround time is very quick, and he’s a legitimate expert. If that won’t work, there are computer programs that can give you your Clivo Axial Angle and Grabb Oakes Measurement. Do you happen to know those already?

As I mentioned, the symptoms like the pressure headache, neck pain/stiffness, tinnitus ringing in ears, orthostatic headaches and EDS-like bone structure fit the profile of Chiari and/or CCI so well, but at this point, cause and effect are so muddled.
I’m frustrated just reading this. Your symptoms are so telling, and your experience with Dr. Greenfield is so typical and disappointing.

I didn't get officially diagnosed with those structural abnormalities, he just explained his reasoning when I specifically asked about them, which was, in short, that my tonsils are low, but not low enough and my odontoid bone; while retroflexed, is not retroflexed enough. He also brought up my EDS-like symptoms as a positive clue, but his final opinion was that the possibility of decompression surgery treating my symptoms is extremely low and not worth pursuing.
That’s the standard “Dr. Greenfield Treatment.” It’s just not great, to put it kindly. And that problem is common; it's not unique to Greenfield. Greenfield has good technical skill, better than most from everything I've read, but he's inadequate at diagnosis. People end up going elsewhere to get proper help.

Bottom line, you still have options for getting answers: Dr. Gilete, the computer program, and possibly Sandhu.
 
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Yes, I’m aware that Dr. Bolognese has been considered controversial by some people, especially a few years back. I was initially wary of him until I did literally thousands of hours of research. @Silencio expressed some concerns and might want to check out this post.

Dr. Henderson is essentially without controversy and most patients consider him to be the “safe gold standard” for CCI/Chiari surgery. Dr. Henderson has also broken a lot of important ground with his research publications.

Problem in your case: Dr. Henderson and Dr. Bolognese don’t take Medicaid. They do accept Medicare and other insurance. I had to get on my dad’s insurance plan in order to get any help.

Bottom line, you still have great options: Dr. Gilete, the computer program, and possibly Sandhu.

I’ve read this thread with incredible interest. My twentysomething daughter was diagnosed with EDS hypermobility type using the newest established criteria after being diagnosed with POTS (Mayo) and ME/CFS (Bateman). Her EDS specialist PT has been adamant that my daughter get a upright flexion/tension MRI. Interestingly enough, her GI-immunologist and neuro-GI have both been driving for this upright MRI as well (the neuro GI specializes in connective tissue disorders and the GI tract). She has many of the symptoms—headaches, tinnitus, numbness on her left side, GI disruptions, pupillary abnormalities, sensitivity to light, visual disturbances, pain etc Her PT also felt she had the symptoms of a possible CSF leak because of her positional headache issues.

She will see her neuroImmunologist next week. I don’t think we will have to push too hard for her to request an upright MRI (assuming that Utah has a facility somewhere). My question is what information/research is out there that I should bring to her appointment? If I do have to make a case, data and research helps. The University of Utah does have a dedicated neuroradiology department and one of the scientific board members of the CS Foundation, Douglas Brockmeyer (pediatric neuro), is at the U of U children’ s hospital. I am hopeful we could get her scans at least *read* at Urah. (Bolognese and Henderson are also on the CS Foundation board)

Also—I did some preliminary research and according to his website, Henderson does not accept any PPO or HMO commercial insurance and is out of network for billing purposes. For neurosurgery, this can be major $$. Sandhu at Georgetown is in-network for us (BC/BS). I didn’t check Bolognese yet.

What does recovery look like for this procedure? We live in the western US so any east coast surgery would require a place to stay. How long would it be before my daughter would be safe to fly?