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

mattie

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Perhaps the reason for choosing these two doctors is that they are the only ones who do assessments remotely or for free. If that is the case then I understand why patients use them........However one unlikely but possible explanation for a doctor who does the first assessment free is a highly cynical one: they provide a diagnosis that leads to treatment they can charge for. I'm not saying j'accuse or anything on any of these doctors. It's just one reason to proceed slowly and with eyes wide open.
Dr. Gilete does not evaluate your MRI for free. He charges 250 euros at the time of writing this post. All three surgeons emphasize that surgery is always the last option to be considered.
Dr. Gilete's office: said:
The evaluation provides a diagnosis and possible surgical solution. The final recommendation is not made until we see the DMX, see you in person, and you as the patient weigh the possibility of improvement of symptoms and quality of life over the risks of surgery and the debilitating nature of a cervical fusion.
 
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If I might add a response @Murph, @debored13, @Gingergrrl

I really appreciate the skepticism. You don't live in the 'free world' if you don't come with skepticism. I flew out of the Middle East at the age of 17 to enroll at Cornell in the U.S. because that meant something to me. But I think my take away from my time there (and outside college in other North American cities) is that things do not get done without making a lot of noise.

So when I read Jeff's story, 12 years after I got ill myself upon merely arriving in a new country, I got the legitimacy of his struggle and it resonated with me quickly. I spent a lot of time thinking that something was seriously mentally wrong with me. I went from being sociable, energetic and hard-working to an anxious, sick, and wasted shell of a person. You don't get exposed to a lot of societal and biological taboos in the Middle East. I was so shaken by the internal health shifts that I literally dove into depression and worse.

I understand Jeff's position and wish he didn't have to go through the mess he did to find help. I spent so long wondering what was going on, trying to get better, and just barely making it through college. I have driven my family head first into this with me, still get told I am a hypochondriac and I still have to answer to them in every financial respect because I can't work. I am only just beginning to earn their trust, if you will.

It is a very good thing that the radiology/scans are there to show for something. You come to notice that a lot of people crave reality, something graphic to confirm what they can only conjure. I was relieved when I got results and it was totally a kind of guess. I have to read the discussions on these boards and be on top of my symptoms otherwise my world crumbles.

I really hope that we'll start another thread for CCI and CFS. My diagnosis was expensive as it was for others. It's not all for nothing (simply put). I remember having mild symptoms before getting really ill. My neck would slouch, I frequently felt tired (fatigue, noticeable to others by my frequent yawning even though I slept 'normally'), hay fever, poor short term memory, sensitivity to light (sudden migraines and sneezing with exposure to sunlight).

But symptoms got *so much worse* and more varied after I came down with 'something' which might have been EBV. I'm talking about a short period of time here -- less than a year and then I was shipped off to college. When I got sick (U.S.) they couldn't confirm it was EBV as I remember the doctor saying. But how to explain getting sick so fast (and I mean, lightning-fast onset) and then having that all be based on CCI? The lower back pain, upper cervical issues, even sleep issues and post-exertional malaise were never a problem for me before getting sick.

CCI as originally and fundamentally causative of CFS still doesn't quite sit with me.
 

Daffodil

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well that MRI trip was totally brutal. plane delayed 3 hrs, missed train home, ugh so sick today

i have to now find out which doctors to send my images to. i wonder how to even get the surgery if i need it. people here are saying that where they are, they cannot get it.....but even in the UK and Germany, wont they listen if you present your case and letters from other specialists?

I am very scared because people wait sometimes years to see a spinal surgeon in Canada and the likelihood of anyone agreeing to do this surgery when there are emergency cases and a huge backlogs, is slim to none.

Hasnt anyone in the various CCI groups gone to Asia? India or Thailand perhaps? Poland?

Thanks:)
 

mattie

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Sorry to hear about your bad MRI trip. @Daffodil

You can send your scans to Dr. Gilete in Barcelona. He offers an online evaluation for 250 euros.
Start online evaluation by Dr. Gilete by clicking here
Visit this link if you require any assistance uploading the files:
http://drgilete.com/how-to-upload-your-imaging/
I used wetransfer.com that worked out fine.

If you want to schedule a videoconference with Dr. Bolognese go to:
http://www.chiarinsc.com/newpatients.php
and
http://www.chiarinsc.com/telemedicine.php
fill in all the paperwork, follow the instructions, mail in the CD's
then get in touch with Ms Pendergast for an appointment at ipendergast@nspc.com

@jeff_w recommends these neurosurgeons: https://www.mechanicalbasis.org/neurosurgeons.html
And I know he has done his homework.

edit: post edited for clarity
 
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Daffodil

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so....i see there are a lot of crowdfunding campaigns for people who need this surgery. they say they need 150 000 pounds or something....but when i look on Dr. Gilete's page, it says the surgery is around $14 - 16K ?
 

Daffodil

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Sorry to hear about your bad MRI trip. @Daffodil
You can send your scans to Dr. Gilete in Barcelona. He offers an online review for 250 euros.
Jeff recommends these neurosurgeons: https://www.mechanicalbasis.org/neurosurgeons.html
And I know he has done his homework.
I am still trying to get in the BTM facebook group.
If you need any help with the Barcelona online review process send me a PM.
It's easy and you should have the results in 2-3 weeks.
thanks a lot! i saw dr. gilete's webpage and it says you can send your question and images online....but i have tried to send MRI images online before and it hasnt worked out well. I will contact them and send the images snail mail

i am also trying to get into the facebook group....if you get in, perhaps you can help me lol

so you were officially diagnosed with CCI?
xo
 

mattie

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so....i see there are a lot of crowdfunding campaigns for people who need this surgery. they say they need 150 pounds or something....but when i look on Dr. Gilete's page, it says the surgery is around $14 - 16K ?
It is certainly more than 14-16K.
Think it's around 150K in the US and about half that amount in Spain, depending on what has to be done exactly.
 
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mattie

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thanks a lot! i saw dr. gilete's webpage and it says you can send your question and images online....but i have tried to send MRI images online before and it hasnt worked out well. I will contact them and send the images snail mail
Start online evaluation by Dr. Gilete by clicking here
Visit this link if you require any assistance uploading the files:
http://drgilete.com/how-to-upload-your-imaging/
I used wetransfer.com that worked out fine.
i am also trying to get into the facebook group....if you get in, perhaps you can help me lol
Can't help you there. They are just not responding.
so you were officially diagnosed with CCI?
Yes. CCI and AAI.
 
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roller

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perhaps one needs both:
acdf = pulling "disk or bone spurs" and then the "fusion "
would make 30,000+ euro.

perhaps one could ask at the appointment if the procedure can be undone, when there are artificial ligaments for replacement in the spine available.
it seems, for knee ligaments and some other such things, artifical replacements have been developed already.
 

Daffodil

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perhaps one needs both:
acdf = pulling "disk or bone spurs" and then the "fusion "
would make 30,000+ euro.

perhaps one could ask at the appointment if the procedure can be undone, when there are artificial ligaments for replacement in the spine available.
for knee and some other things such have been developed already.
thanks...lots to think about!

considering I have been hemorrhaging money now for 20 yrs with this illness, money for this is going to be very hard to come by :( ...well that's if I have it...

oh how I wish I lived somewhere other than Canada!
 

mattie

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Daffodil

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Anterior Cervical Discectomy and Fusion

This is a medical tourism promo site.
The procedure will cost a lot more than that. We are talking 5-8 hours of surgery with 3 surgeons at the table.
Lot's of pre- and post-op care. Hospital stay afterwards, etc. etc.
yea that sounded too good to be true. how about Poland? its dirt cheap over there