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

roller

roller

wiggle jiggle
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775
everyone has high hopes, and i dont want to be rude.
also, i may not understand the thing not correctly.

the only definitely sure outcome of this is, that you will need more such surgeries in the future.
imagine a puzzle and you pull a piece of drama-relevance in terms of static.
perhaps, money shouldnt be a problem for you with this treatment.

what reliable witnesses reported back on the surgery...?
after 6 or 12 months.
 
Daffodil

Daffodil

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roller said:
everyone has high hopes, and i dont want to be rude.
also, i may not understand the thing not correctly.

the only definitely sure outcome of this is, that you will need more such surgeries in the future.
imagine a puzzle and you pull a piece of drama-relevance in terms of static.
perhaps, money shouldnt be a problem for you with this treatment.

what reliable witnesses reported back on the surgery...?
after 6 or 12 months.
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of course you are right.....spinal surgery is an awful rabbit hole, i know that....but living with 26 yrs of severe brain fog is no piece of cake either. if i can have some relief of that, i would do almost anything
 
mattie

mattie

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375
Malea said:
I vaguely remember that someone from UK wrote on here that surgery with Dr Gilete would be around 80.000 pounds.
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That sounds about right. I have seen multiple fundraiser sites with similar amounts.
 
rel8ted

rel8ted

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Murph said:
Hi Again! I'd like to pop up in here as a doom-monger, cold water-pourer and miserable skeptic. :)
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I always see you as the balance, Murph...

In my case I want to know for sure if this is an underlying issue. I have concerns about the surgery itself and hardware failure, etc., but that is my nature. I need to know all the angles so I can be prepared in my mind in case it turns into a nuclear meltdown situation, I need my bases covered. I read something Dr. Henderson presented that said it takes 12 years to train a neurosurgeon, but basically the best thing they can know is when NOT to operate.
 
gm286

gm286

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rel8ted said:
I read something Dr. Henderson presented that said it takes 12 years to train a neurosurgeon, but basically the best thing they can know is when NOT to operate.
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Gilete’s words (Barcelona): “I do not want to operate.” If that is not 100% exact, then I am paraphrasing the near exact thing he said verbatim.

They want to make sure they absolutely *ought to*, that it is the patient’s ultimate decision, that it is viable, and at the same time, that it is viable because the patient is not in a critical state.
 
rel8ted

rel8ted

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mattie said:
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.
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I wouldn't want that done for $15717. Expertise is not cheap.
 
rel8ted

rel8ted

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Daffodil said:
yea that sounded too good to be true. how about Poland? its dirt cheap over there
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I would be extremely hesitant to have teeth pulled because the price is "cheap", and we are talking about neurosurgery here. If you feel comfortable going just anywhere to have a procedure of that magnitude done to get a discount, feel free. I would want the best guy with the most experience and even then would have concerns that my procedure would be the one that goes bad. I have heard stories about people who have had subpar neck surgeries for other conditions that required corrections. If that happens, you have saved nothing and endured more than was necessary.
 
I

Inara

Senior Member
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455
Personally, for me, 15000$ is not cheap. I don't even have that amount of money in total. And honestly, I think 80000$ is exaggerated. I know people may think otherwise.
 
Daffodil

Daffodil

Senior Member
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5,879
fact is, there are excellent neurosurgeons in places like Poland and india...problem is, how to find them. you cant blame me for thinking about it...I mean, there would be literally no other way I could have it done. I've been sick for 26 yrs. there is no money left.

some people marry people with insurance in another country to get these things done...but I don't know anyone

I remember reading about a woman who put an ad in the paper asking for someone Canadian to marry her so she could get cancer treatment here. she wanted someone she got along with so it wouldn't be just for convenience. she had 2 offers: one from a man who had lost his wife to cancer and one from a female university student!
 
S

StarChild56

Senior Member
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1,405
used_to_race said:
It seems like people are getting diagnosed using supine MRIs? Is that now considered to be just as good for diagnostic purposes as the upright MRI with flexion/extension?
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Dr. Bolognese in NY accepts supine MRIs with specific flexion and other views (I've forgotten what they are called). For my MRI, my PCP added on the additional required views when she ordered my cervical MRI. I had to bend my neck forward (ow) and hold it for a long time (to me) and also bend my neck/head backward and hold it, too in addition to the "normal" just laying there on your back position in the MRI (which took the longest amount of time, thankfully).
 
mattie

mattie

Senior Member
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375
CCI lecture by Dr. Gilete in Lund, Sweden.
Audio is poor, but if you crank up the volume and listen carefully it's quite understandable.

 
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K

keenly

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Is there a natural treatment, non surgical?

For years I have thought the position of the neck is imperative. I have observes that if my head is too far back on a pillow, or I strain my neck muscles I am instantly exhausted.
 
Hip

Hip

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18,109
One possible supplement that might help strengthen the ligaments in cases of CCI/AAI is BPC 157, which is a injectable peptide sold on body-building websites. I've tried it briefly.

Some info:
Pentadecapeptide BPC 157

Synonyms: Body Protection Compound 157

Pentadecapeptide BPC 157 has been shown in rat studies to:
- heal torn quadriceps muscles, detached achilles tendon, muscles that have been damaged/crushed
- dramatic fast recovery from muscle tears
- tendon to bone healing
- increased ligament healing
- has a variety of protective effects in the organs
- human trials demonstrate healing and prevention of stomach ulcers
- no adverse reactions have been seen in human trials
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Other supplements that promote or are needed to build tendons and ligaments include: L-proline, xylitol, vitamin C, copper, silica, Q10, gotu kola (though ME/CFS patients often have issues with this herb).
 
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