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

rel8ted

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so what do you guys think of dr. yong liu in china? surgery there is like 1/8th of the cost of the USA....
I think you really should take a step back and consider some things:
1.) how long would you be staying in China before returning home on a long international flight?
2.) how much will housing & food for you and a companion be?
3.) if you return home and your hardware breaks, what neurosurgeon is going to fix it?
4.) what is follow up care like in China? What if you get an infection before leaving?

Again, 🌼 Daffodil, it isn’t just about how cheap you can get the surgery done. It is about the potential complications & how they will be handled.

I really feel like if you want to have discount surgery, you should. Maybe you will prove the rest of us wrong. Maybe not. It isn’t a chance I’m willing to take, though.
 

Daffodil

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I think you really should take a step back and consider some things:
1.) how long would you be staying in China before returning home on a long international flight?
2.) how much will housing & food for you and a companion be?
3.) if you return home and your hardware breaks, what neurosurgeon is going to fix it?
4.) what is follow up care like in China? What if you get an infection before leaving?

Again, 🌼 Daffodil, it isn’t just about how cheap you can get the surgery done. It is about the potential complications & how they will be handled.

I really feel like if you want to have discount surgery, you should. Maybe you will prove the rest of us wrong. Maybe not. It isn’t a chance I’m willing to take, though.
but what if you have been sick 27 yrs and are sick of suffering? how can i wait around for another 10 yrs until studies are done or until other people try out these docs? i just hate this so much.

sorry just whining again. i will try out one stem cell procedure for the alar and transverse ligaments and then see what happens i guess. that will be another year.... and the stem cell procedures together is probably the cost of the surgery anyway UGH
 

rel8ted

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but what if you have been sick 27 yrs and are sick of suffering? how can i wait around for another 10 yrs until studies are done or until other people try out these docs? i just hate this so much.

sorry just whining again. i will try out one stem cell procedure for the alar and transverse ligaments and then see what happens i guess. that will be another year.... and the stem cell procedures together is probably the cost of the surgery anyway UGH
I have been sick that long.

I am just saying that if you really want surgery, pursue it. Nobody here can make that decision for you. Daffodil is in charge of what treatments are administered to Daffodil and by whom. I am only saying that there are some things that you possibly not taken into consideration, like those included in the list I previously posted, and
5.) What if you experience complications from said surgery by a foreign surgeon and are not well enough or financially equipped to travel back. Are you prepared to live with the fact that cheap surgery made you worse?

That could be a reality. That is all I am saying. I am not downing the surgeon. I am not downing the procedure. All of this is new territory. Just remember, the trailblazers have to hack away at the weeds and fight with the brush. they work tirelessly to clear the way for others. They are risk takers and adventurous, brave and bold. The followers have a much clearer path with much less risk.

Only you can decide if you are a trailblazer or a follower.

A little investigation into what happens when medical tourism goes awry may make the decisin clearer to you. I do not have time or energy to do that for you.
 

Daffodil

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I have been sick that long.

I am just saying that if you really want surgery, pursue it. Nobody here can make that decision for you. Daffodil is in charge of what treatments are administered to Daffodil and by whom. I am only saying that there are some things that you possibly not taken into consideration, like those included in the list I previously posted, and
5.) What if you experience complications from said surgery by a foreign surgeon and are not well enough or financially equipped to travel back. Are you prepared to live with the fact that cheap surgery made you worse?

That could be a reality. That is all I am saying. I am not downing the surgeon. I am not downing the procedure. All of this is new territory. Just remember, the trailblazers have to hack away at the weeds and fight with the brush. they work tirelessly to clear the way for others. They are risk takers and adventurous, brave and bold. The followers have a much clearer path with much less risk.

Only you can decide if you are a trailblazer or a follower.

A little investigation into what happens when medical tourism goes awry may make the decisin clearer to you. I do not have time or energy to do that for you.
well i have kind of been a trailblazer before...i think i must have been one of the first to try hiv drugs for this. but i dont know if i want to be a trailblazer for brain surgery quite yet ha!

but i often get scolded for bringing up the idea of foreign surgeons here. this is wrong. we must face the fact that thousands or millions cannot have surgery in spain or the USA. and many are severely ill. so we must be able to discuss this issue freely.
 
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so what do you guys think of dr. yong liu in china? surgery there is like 1/8th of the cost of the USA....
Do you happen to have a link to his website, I had a hard time finding him. Also curious as to how much is surgery in the states? How did you find out how much surgery is w Dr yong liu?
 

Daffodil

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Do you happen to have a link to his website, I had a hard time finding him. Also curious as to how much is surgery in the states? How did you find out how much surgery is w Dr yong liu?
i dont know exactly..i heard someone say $200K in the states...i know its about $100K in spain.. i know china's prices are low, maybe $40K-ish? india is about the same or lower.

dr. yong liu might have a chinese website, i dont know but he is on this chiari list. you can also find him speak at a lot of chiari seminars with a translator if you google. there are quite a few articles also, with his name as one of the authors
http://www.chiariconnectioninternational.com/doctorlist3.php
 
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Had a normal 1.5T supine MRI of cervical spine at a local scan center. Did not expect the radiologist at the center to find anything, but he already reported some kind of abnormality in the cervical spine!

The report said the following: "Straightening of cervical vertebral alignment is evident consequent to para spinal muscle spasm"

A local neurologist ordered this scan and I'm thinking he will recommend cervical traction based on this, which Dr Bolognese recommended as the first diagnostic step for CCI. Hopefully I experience symptom relief upon traction.

After this I shall consult with a specialist.
 

pattismith

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Just wanted to make everyone aware that CCI fusion surgery has not good outcomes in every practice. (Jen Brea and Jeff already warned about this reality).

Here what Dr J. Edwards, "Emeritus Professor of Connective Tissue Medicine at University College London (UCL) in the UK" wrote about it on the s4m forum
 

Daffodil

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Just wanted to make everyone aware that CCI fusion surgery has not good outcomes in every practice. (Jen Brea and Jeff already warned about this reality).

Here what Dr J. Edwards, "Emeritus Professor of Connective Tissue Medicine at University College London (UCL) in the UK" wrote about it on the s4m forum
another thing to keep in mind is that not everyone who has had surgery had recovery

maybe everyone should have invasive traction first. maybe travel somewhere cheap for that first? then see...

there are really no easy answers.
 
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another thing to keep in mind is that not everyone who has had surgery had recovery

maybe everyone should have invasive traction first. maybe travel somewhere cheap for that first? then see...

there are really no easy answers.
I have heard seven people having surgery so far with five people completely recovered and two people with significant improvements on the way to recovery. Is there anyone else I'm missing?

Performing traction to check for symptom relief certainly seems to be a great first step though.
 

Daffodil

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I have heard seven people having surgery so far with five people completely recovered and two people with significant improvements on the way to recovery. Is there anyone else I'm missing?

Performing traction to check for symptom relief certainly seems to be a great first step though.
invasive traction is expensive though...thousands of dollars

there was someone on this board and I think on this thread much earlier on who said they had surgery on neck with no improvement in CFS symptoms. maybe some things improved like headaches or something, I cannot remember. anyway. dr. GIlete's office told me that there are some who do not improve after surgery
 
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I didn't think to ask, but does good insurance generally pay for CCI surgery? I'm sitting here just assuming they would, if the doctor found an issue.

I agree that invasive traction might be a great first step.
 

JenB

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A CO-C2 fusion is US$100K in the US and about 80 euros in Spain.

That’s still A LOT of money but I worry about the inaccurate and inflated costs that keep getting tossed around.

I also think everyone should consider the costs of additional surgery. I had a fusion but then it became very clear I needed a tethered cord release the following week. Then I developed a leak and they need to go in an investigate to make sure everything was OK. That’s three procedures, two of which I didn’t plan. I would never have been able to have afforded them if they weren’t covered by my insurance.

Of course, that doesn’t account for cost of imaging, travel, etc.
 
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JenB

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Just wanted to make everyone aware that CCI fusion surgery has not good outcomes in every practice. (Jen Brea and Jeff already warned about this reality).

Here what Dr J. Edwards, "Emeritus Professor of Connective Tissue Medicine at University College London (UCL) in the UK" wrote about it on the s4m forum
We have no idea what the “death rate” is for ME patients. A meta-study of 2274 procedures (for people with a wide range of conditions) found it to be 0-0.6%. Here is the research on complication rates: https://www.me-pedia.org/wiki/Craniocervical_instability#Surgery