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

bombsh3ll

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Just a little update to this thread for anyone still reading. I hope you are on the mend now Jeff!

I just got back from seeing Dr Gilete in Spain for the same issue. I was diagnosed with HEDS a couple of months ago by a geneticist.

I had the scans in London that Jeff mentioned, neck in flexion, extension and neutral. Dr Gilete has also asked me to get MRIs of the craniocervical junction in left and right lateral rotation. I wish I had known to ask for these initially - if anyone is planning a neurosurgical consult it might be a good idea to ask that surgeon first what scans they require.

Anyway, based on the imaging I had along with symptoms and history, Dr Gilete diagnosed cranial settling, like Jeff had. I am now saving up to back for a trial of a halo brace. Unfortunately this will just be for around 48 hours to see if it helps, as a test to see if I will benefit from surgery. The proposed surgery is C0-2 fusion, the same as Jeff had.

I so hope this works!
 
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It won't show up on a standard brain MRI. You need an upright, flexion-extension MRI. And even then, the vast majority of radiology reports will come back negative, even with obvious Chiari. You need a Chiari-knowledgeable neurosurgeon to interpret the image, not to simply read the written radiology report.

So, the steps to rule in/out Chiari Malformation:
1. Get the correct imaging. (Upright flexion-extension MRI)
2. Send it to the correct neurosurgeon. (There are only about 3 or 4 specialists in the USA)
My husbands Chiari was found with a CT and the surgeon who replaced his discs was the one who found it. My husband also has red colorings on the nape of his neck as of recent- interesting.
 

Silencio

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I hope it works for you too @bombsh3ll. Are you nervous about the halo?

I am thinking of going to Gilete.. I haven’t had any imaging done yet so will just get whatever done there that he prescribes. Was it possible to do the imaging there at his facility?

I don’t have EDS. I have significant scoliosis, headaches, weakness and typical PEM.

@jeff_w Hope you are doing ok and recovering.

Edit to add: I also found this center online while looking at Barcelona.. https://institutchiaribcn.com/ Did you research Dr. Salvador at all? (I know Jeff only recommends 3 surgeons for chiara or cranial settling, but I am also looking into scoliosis centers and am just beginning to research)
 
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ErdemX

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I am thinking of going to Gilete.. I haven’t had any imaging done yet so will just get whatever done there that he prescribes. Was it possible to do the imaging there at his facility?
I have also contacted Dr. Gilette's assistant and she requested this upright MRI. When I asked, she told me this special device is not available in Spain and it exists in UK and Germany, as far as she knows. So I will be visiting London for the MRI scan and then Dr. Gilete will be looking at it along with the long symptoms questionnaire I completed online.
 

Silencio

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I have also contacted Dr. Gilette's assistant and she requested this upright MRI. When I asked, she told me this special device is not available in Spain and it exists in UK and Germany, as far as she knows. So I will be visiting London for the MRI scan and then Dr. Gilete will be looking at it along with the long symptoms questionnaire I completed online.
Ohh... goodness. I am not sure I could manage trips to two countries. How frustrating.
Thanks for sharing..
 

jeff_w

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Just a little update to this thread for anyone still reading. I hope you are on the mend now Jeff!
I am, thanks!

Anyway, based on the imaging I had along with symptoms and history, Dr Gilete diagnosed cranial settling, like Jeff had. I am now saving up to back for a trial of a halo brace. Unfortunately this will just be for around 48 hours to see if it helps, as a test to see if I will benefit from surgery. The proposed surgery is C0-2 fusion, the same as Jeff had.

I so hope this works!
Awesome! I'm glad that they caught this and that you're addressing it.

I think many of us who have been diagnosed with ME/CFS/SEID actually have these neurosurgical issues.

I had all of the standard "ME/CFS/SEID" immune system issues, which were identified by Dr. Kaufman with regular blood tests: reactivated EBV, low NK cell function, etc. I also had severe POTS, post-exertional malaise, and was bedridden due to POTS and PEM for years.

All of that can be caused by craniocervical instability (CCI), which compresses the brainstem and disrupts autonomic nervous system function. The autonomic nervous system works in tandem with the immune system (there is peer-reviewed research on this). So, it's logical that a neurosurgical issue could cause immune system abnormalities.

My hope has been that others here will get tested for these issues -- Chiari, Craniocervical Instability, Tethered Cord Syndrome -- as a standard protocol of ruling out conditions that could be causing their ME/CFS/SEID.
 
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Neunistiva

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My hope has been that others here will get tested for these issues -- Chiari, Craniocervical Instability, Tethered Cord Syndrome -- as a standard protocol of ruling out conditions that could be causing their ME/CFS/SEID
How horrible if some severe patients have this - they can't get tested and they might have something curable
 

jeff_w

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How horrible if some severe patients have this - they can't get tested and they might have something curable
Yes.

I think we need to start a fund to help people with severe ME/CFS/SEID get tested for these neurosurgical conditions. Perhaps a lot of people would find a diagnosis and a cure.

I was severe for several years, and then very severe for about a year. I was bedridden and needed a wheelchair. I could not prepare meals or bathe independently. I had to be wheeled to the bathroom and have someone bathe me. I also had a few episodes of paralysis, where I couldn't move or speak. The exhaustion and PEM were the most limiting factors, with POTS being a close third.

After the halo, and then after surgery, I no longer have PEM or POTS. I had craniocervical instability -- with cranial settling -- the entire time. My brain stem was being crushed, and as a result I had all the classic ME/CFS/SEID indicators, including the typical immune system disruption seen in blood work.
 
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jeff_w

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jeff_w

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An article about Chiari..
Why Was Her Vision Jerky and Blurry if There Was Nothing Wrong With Her Eyes? https://nyti.ms/2FywLgu

I have this vision problem, light sensitivity. I get headaches but in front of head, not lower back of head.

@jeff_w did you ever see Dr. Batzdorf?
I never saw Dr. Batzdorf, but he would have been the best Chiari doctor to see in California. Unfortunately, he's retired now and only does consults for other neurosurgeons. A young woman with Chiari and craniocervical instability was at Cedars Sinai the same time I was there, and she saw him in consultation.
 

Neunistiva

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I think we need to start a fund to help people with severe ME/CFS/SEID get tested for these neurosurgical conditions.
I have free healthcare, but I don't think I would survive the transportation and the noise and vibrations of an MRI machine. Especially if I had to travel to another country to get an upright one.

Did you ever have gait issues, balance problems or issues with coordination? How was your vision?

After the halo, and then after surgery, I no longer have PEM or POTS.
That is truly incredible. I am so glad you are free. :hug:
 

jeff_w

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I have free healthcare, but I don't think I would survive the transportation and the noise and vibrations of an MRI machine. Especially if I had to travel to another country to get an upright one.
Sometimes, a CT scan can detect the problem, as long as it's a flexion-extension CT. These dynamic CTs can be done lying down.

Did you ever have gait issues, balance problems or issues with coordination? How was your vision?
I didn't have gait issues, but I did have vertigo. My vision was fine, but I had an extremely low tolerance for light. Even dim lights felt too bright, and I couldn't adjust to light very well, due to (what I now know was) neurological compromise.

For those with Chiari malformation, gait issues are common.

That is truly incredible. I am so glad you are free. :hug:
Thank you.

I still have to build myself back up after almost 4 years of being mostly bedridden, followed by 5 months of hospitalization with complete physical immobility, and then 4 months in a halo. I can walk again, finally, short distances. My legs were too weak at first to reliably get me around the house.

Because of how severely ill and restricted I was for so many years, I will need another year or so of physical therapy before I can function as a non-disabled person. At first, I thought I'd be back to normal after a few months. But my physical therapists have been very clear that it will take at least a year.

But now, I can participate in physical therapy without any PEM. I respond to exercise like a neurologically and immunologically healthy person. I no longer have POTS interfering with my ability to be active. My standing heart rate is in the 80's. My sitting heart rate is in the 70's. Brain fog is gone. I wake up refreshed, with a clear head.

It's hard to believe sometimes. I thought I would be severely disabled for life.

I can't say it enough to everyone on here: Please get dynamic imaging to check for Chiari Malformation, Craniocervical Instability, and Tethered Cord Syndrome. There are only 3 neurosurgeons in the world who can help with this: Dr. Henderson in Maryland; Dr. Bolognese in New York; and Dr. Gilete in Barcelona, Spain. There is also a new one who is quickly developing competence: Dr. Sandhu in Georgetown, Washington DC. Also, 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.

The "regular" neurosurgeons who read your imaging don't know how to check for these conditions. They've never been taught about them, and they will tell you you're fine. That happened to me, when my imaging actually showed a need for surgery and significant brain stem compression.

Doctors regularly rule out thyroid issues, sleep apnea, etc. before diagnosing ME/CFS/SEID. They need to start ruling out these neurosurgical issues as part of their first line of investigation.
 
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