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

Markus83

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Why do you care what people on FB say? These are lay people. I highly doubt there is anyone who really can interpret mri scans properly. What did your radiologist say? I would send these scans to a specialist, I think there are several in the US and some will do telemedicine.
 

kelly8

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I care about what the people on the M.E. Spine and brain page think because most of them have either had the surgery or investigated the surgery. Our patient population has been extremely helpful in coming up with treatments and reviewing my stuff especially when most Dr's wouldn't help. My radiologist said the dens was pointed towards the spinal cord. But as Jeff has said many times the radiologists are NOT trained to look for this. The fact that something was found in itself was disturbing. I was expecting to not hear anything until Dr. B reviewed it.
 
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He told me exactly the same. Seems that he's getting more cautious in recommending fusion surgery.
Yes. That’s my impression too. I thought he would recommend surgery of the tethered cord since that is a much easier surgery but he said he hasn’t seen many get better from only that.
 

Markus83

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Based on which images did he diagnose you and how where your measurements? In my case it seems I have only relatively mild CCI/AAI, at least based on imaging. Gilete also told me that 95 % of his surgeries are female patients.
 
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Based on which images did he diagnose you and how where your measurements? In my case it seems I have only relatively mild CCI/AAI, at least based on imaging. Gilete also told me that 95 % of his surgeries are female patients.
I have mild symptoms but the measurements was clear he said. I don’t remember them exactly and I’m still waiting for my report. It was from the extension and flexion CBCT. One of them was 6 mm where he said 1 mm was normal. Tethered cord was seen on prone lumbar MRI.
 

lenora

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Yes, a lot of doctors are beginning to take a more conservative approach to surgery once again.

I have Syringomyelia and Arnold-Chiari and had Chiari surgery about 35 years+ ago. SM surgery was done earlier and resulted in lifelong nerve pain that's difficult. If the exercises and the collar work, then I would listen to the surgeon. Too many people insist on surgery and then pay a lifelong price for it.

Since they make their living that way, there must be a good reason to not operate. I also have cord problems and at age 74, won't be having anymore surgeries to help these conditions. There are now other things to be concerned about, plus how much time do I want to spend at the doctor's office or PT, etc., anyway? It's different when one is young, I agree wholeheartedly.

Nothing takes away all of the symptoms, whether or not surgery is involved. I wish both of you well in your decisions. Yours, Lenora.
 

minimus

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Any ideas on where to go for imaging in the New York area?

New York is a supposed hot bed of top-notch medical care, but it has been very difficult to get decent imaging. I am severe/housebound and have a lot of difficulty walking. None of the hospital-affiliated radiology practices have upright MRI machines.

I ended up going to a dingy storefront radiology office called Stand-Up MRI New York, where I got an upright cervical MRI and an upright lumbar MRI. For the cervical MRI, they did flexion, extension, and neutral imaging. They are unable to do rotational cervical imaging -- they have never heard of it.

I had a telehealth consult with Dr. Gilete a few months ago, which cost $850. He said that my neutral cervical MRI images were so blurry that it was impossible for him to take any measurements. So he has no idea if CCI might be an issue.

Looking at my upright lumbar MRI, he noted that my spinal cord looked too straight, as if it is being pulled, possibly suggesting occult tethered cord. But to really evaluate for OTC, he said I should get a prone (face down) lumbar MRI. I haven't been able to find any radiology practice in New York that does that type of MRI.

He also said I would need urodynamic studies, but I haven't found a urologist willing to do it to rule in/out OTC. The two that I spoke to said that tethered cord is a pediatric diagnosis and they haven't heard of occult tethered cord.

Where have others gone to get imaging and testing done? It seems that many patients have successfully found doctors who know where to send them to get the necessary imaging. Are any in the New York metropolitan area?
 

lenora

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Hello @minimus......I'm in TX, but do know the The Chiari Insitute in NYC (or suburb now) may be able to help you. I would tell them your exact situation and how fuzzy the other pictures were.

True, it's a Chiari Center but may even be able to do the CD's for you. At least you'll have clear pictures to send off to others, plus you'll have knowledgeable radiologists read them in the first instance.

That's all I can suggest. I don't know the phone number, but you can access it on the Internet. Yours, Lenora.
 

lenora

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@minimus.....I forgot to mention that if you have to stay overnight, the Chiari Institute provides for free accommodations (or a donation). Please ask about it...although I believe it has moved and may not be able to have such accommodations today. Still worth a try. Yours, Lenora.
 
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I have anxiety from when I was child and I have been fatigued for last 10 years. I can take walk for half hour, but weight lifting makes me exhausted for next days. I am always "lazy", I want to do things but I don't have energy.

I read that cfs could be caused by CCI. However I don't have any other CCI symptoms such as balance problems, pains, dizziness etc. What I have is neck cracking from when I was young. It is cracking for every move, in the very top of neck into the skull and in the middle. I can hear/feel cracking for every move and I remember this has been very noticeable from when I was child.

Do you think neck cracking could cause Chiari or CCI even if I don't have any other CCI symptoms and this could cause fatigue? Does it make any sense to make MRI if I don't have any other symptoms?
 

lenora

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Hi @johny2.....An MRI is an easy test that can pick up multiple problems. If you're anxious, you may want to tell your Dr. in case you need something at the time. Personally, I've had at least 35-40 and am able to actually enter and meditate. You'll have headphones from which you'll hear music and earplugs to block out the sound. I bring my own earplugs, as that helps.

You should have a test with and without contrast, from your brain down the bottom of your spine. A radiologist will read it and send a report, but I would ask your doctor to also read it. It's surprising what different doctors can pick up on. It's a worthwhile test, and look at it as helping you. Before we had the MRI it was impossible to see inside the spinal cord so it's a marvelous invention. You should also get a copy of the CD and the report for your own files. Generally there is no charge for this.

You'll have to stay very still, but I find the time passes fairly quickly. Be prepared for pain the day after....you're lying flat and for some of us it may be uncomfortable. If I can be of further help, let me know. Yours, Lenora.
 

Bowser

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I have anxiety from when I was child and I have been fatigued for last 10 years. I can take walk for half hour, but weight lifting makes me exhausted for next days. I am always "lazy", I want to do things but I don't have energy.

I read that cfs could be caused by CCI. However I don't have any other CCI symptoms such as balance problems, pains, dizziness etc. What I have is neck cracking from when I was young. It is cracking for every move, in the very top of neck into the skull and in the middle. I can hear/feel cracking for every move and I remember this has been very noticeable from when I was child.

Do you think neck cracking could cause Chiari or CCI even if I don't have any other CCI symptoms and this could cause fatigue? Does it make any sense to make MRI if I don't have any other symptoms?
Try to investigate the possibility of IIH caused by Thoracic Outlet Syndrome (TOS), which is one of the other causes of neck symptoms due to weak scalenes, trapezius and other musculature in the neck.

https://mskneurology.com/myalgic-encephalomyelitis-me-biomechanical/
 
Hello! I have been suffering from ME/CFS for several years, the conditions are similar to Jeff's and I suppose I could have CCI too.
I would like to know if any of you went to Dr. Gilete in 2021? As far as I understand, they are already doing the investigations in Barcelona, they have more packages and they prefer Upright cervical CBCT in flexion, extension, than MRT to diagnose CCI . My question is, if any of you have been to him and you have chosen the package by yourself or consulted with him? Thanks.