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

Gingergrrl

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I'll add that Dr. Kaufman is extremely intellectually curious. He's driven to help us in a way that I've never seen before in a doctor.
I absolutely could not agree with this statement more. He's intellectually curious, driven to help, and also very compassionate and kind. He literally helped come up with questions for me to ask my mom's oncologist on Christmas Eve. Who does that?
 

perrier

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May I ask, what sorts of improvements are folks getting from Kaufman's treatments? Does anyone know?
 
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@jeff_w
Mind.Blown. My family's history of neck issues along with chronic health issues could all come down to this...I cannot thank you enough for this info. Please keep us posted on your health, and if you see continuous improvement(which I so very hope you do!) My 4 year old son complains of neck/back pain already, and if this is something I can find that works for me then he will be ahead of the game. Which is all I can hope for...
 

Gingergrrl

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It's been amazing! And I look forward to no longer needing it after fusion surgery.
I wasn't sure where to post this but I hope you had a safe trip to NY @jeff_w and if I am remembering correctly, your surgery is in a few days! I hope everything goes smoothly and please let us know how you are doing when you can. Fingers crossed, I am looking forward to you no longer needing the halo and making a 100% full pre-illness recovery :hug: :hug::hug:
 
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Francis smith at the london Center is skilled at picking up CCI
The first step is getting the MRI order from Dr. Kaufman. He wrote mine.

The exact order should be an MRI of the skull and cervical spine, upright with flexion-extension. An MRI that is flat won't help you. It needs to be upright with flexion-extension. Without flexion-extension, the problem will be missed.

I can't say this enough: If it's not this exact order, it won't help you. Dr. Kaufman wrote this exact order for me. Be sure to check for and remind Dr. Kaufman of the exact wording if need be, just in case. Mention me by name, too, if you want.

Instructions for the MRI: The MRI happens in three parts: Flexion, neutral, and extension.

During the upright MRI, you'll need to flex your head forward as far as you can. You'll then have a neutral image, head above shoulders normally, without flexing. Then, you'll need to bend your neck backwards as far as you can. You need to push your neck to demonstrate your entire range of motion for this test, or the results will be invalid. (The radiology techs will give you some guidance, but they don't always give detailed instructions, so I included them here. In my case, he gave me really vague instructions, which gave an invalid image, so I had to repeat the test.)

A few days or weeks after the MRI, you'll receive a radiology report. Ignore it. Radiologists aren't trained to look for this problem, craniocervical instability (CCI). So, the written report is meaningless for this purpose.

You'll need to request multiple hard copies of your MRI CDs. Then, you'll need to mail the MRI CDs to one or more of the following three neurosurgeons: Dr. Bolognese (New York), Dr. Henderson (Maryland), or Dr. Gilete (Barcelona, Spain). These are the only neurosurgeons who consistently know how to read these images to diagnose CCI. If you try any others, such as a local neurosurgeon, you will be misdiagnosed.

Good luck!
nicid
 

bombsh3ll

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Francis smith at the london Center is skilled at picking up CCI
That's helpful to know, thanks. Is he a neurosurgeon or a radiologist? Do you know what he charges to review scans? My images are currently with Dr Gilete in Spain. He charges 250 euros to review your MRI scans with a symptom questionnaire.

If I did need surgery, I would prefer to get it in the UK if there was someone with the skills. Having said that, my daughter wouldn't be here if I hadn't gone to Spain for IVF, & the standard of care there far surpassed the UK. It is travel that is very difficult for me now.
 
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He is a professor of radiology ,charges about 200 to read scans so I've heard.

That's helpful to know, thanks. Is he a neurosurgeon or a radiologist? Do you know what he charges to review scans? My images are currently with Dr Gilete in Spain. He charges 250 euros to review your MRI scans with a symptom questionnaire.

If I did need surgery, I would prefer to get it in the UK if there was someone with the skills. Having said that, my daughter wouldn't be here if I hadn't gone to Spain for IVF, & the standard of care there far surpassed the UK. It is travel that is very difficult for me now.
 

MartinDH

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Can one have this without elastic skin and elastic joints? because my 23andme results show a mutation related to EDS
 

kelly8

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Does anyone know how @jeff_w is doing? I'm hoping well. My sister has eds and is having Neuro issues. I've always had a "loose " vertebrae in my neck. This info is priceless to us. I'm hoping surgery went well and he is doing better!
 

jeff_w

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Does anyone know how @jeff_w is doing? I'm hoping well. My sister has eds and is having Neuro issues. I've always had a "loose " vertebrae in my neck. This info is priceless to us. I'm hoping surgery went well and he is doing better!
Hi Everyone,

My surgery on 1/31 went well, with a few complications.

After surgery, my POTS was gone for three days. On day 4, my post-surgical swelling increased, which is normal, and the POTS returned. This is normal, but frustrating. The swelling causes POTS to temporarily reemerge, because the swelling puts pressure on the craniocervical area and distorts the neuro structures -- until the swelling resolves.

Around the second week, my swelling was decreasing, and my POTS was going away. This was an amazing feeling to be without a halo, holding my head up, improving.

Until... the surgical site became infected.

Day 21 post-surgery, the swelling rapidly increased, and my incision site became bright red, inflamed, and the redness was spreading. I spiked a fever of 101.6 and went to the E.R. They admitted me for a week, got me on IV antiobiotics with a PICC line. I was discharged yesterday.

My hospital infectious disease team consulted with the Mayo Clinic, and they recommended that I return to Dr. B in New York to get the surgical site re-opened and cleaned out. This is officially called "debridement" of the surgical site. Dr. Bolognese said that his protocol in cases of infection is debridement. So with Dr. B and the Mayo Clinic on the same page, I've scheduled an appointment to fly back to NY and be opened up on March 13th.

Fortunately, Dr. Bolognese won't have to remove the fusion hardware. As long as the infection hasn't yet embedded into the hardware, a debridement and IV antibiotics is all I will need.

I'm disappointed by this setback, but I'm keeping the long term view in mind.
 
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Sushi

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I'm disappointed by this setback, but I'm keeping the long term view in mind.
Thanks for updating us Jeff. We have all been thinking of you and hoping that things were going well. Sorry for the setback but it sounds like you are in very good hands. Your initial improvements are very encouraging. Best wishes for your return to New York. We'll be really appreciative to hear how everything goes for you. I'm tagging @Butydoc as I'm sure he will also be interested in your post.
 

kelly8

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So sorry to hear of the setback @jeff_w ! I'm sure having those symptoms going away and then coming back was frustrating but it sounds like you are in the right track. Keep us posted as to your progress!
 

Never Give Up

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Thanks for the update @jeff_w . The story of your symptoms, diagnosis, surgery, and your response to the surgery is just fascinating. I am sorry to hear about your infection and hope it will be gone soon. You’re a tough guy. Thank you for sharing your story. Hope you will be well soon. :hug:
 

nanonug

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MRI of the head revealed no Chiari malformation in my case. More than that, it revealed nothing wrong. I've had two head MRIs done so far.
 

Dmitri

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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:
 
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bombsh3ll

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Thanks for updating Jeff, I'm so pleased to hear your surgery went well on the whole, but sorry to hear about your setbacks. I hope you are soon on the mend and look forward to hearing the final verdict on surgery, it sounds very positive that you got periods of relief from POTS!