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

[GypsyGirl]

This may have been answered already. If so, my apologies, as I don't have the mental stamina to read a 65-page thread.

How much does CCI diagnosis and treatment cost from initial imaging to neurosurgeon consults to surgery to hospitalization to post-treatment physical therapy? I assume the cost is well into the hundreds of thousands of dollars in the US, since I can't imagine that neurosurgery lasting up to 8 hours (?) is cheap.

Do you need really deep pockets, a willingness to go into debt, or really good private health insurance in the US, possibly through a spouse/domestic partner or parent, to consider going down this diagnostic route, as opposed to an Obamacare plan or Medicare. Would be really helpful to know if treatment is even within the realm of financial possibility before considering getting diagnostic imaging done in the first place. Thanks.

I daresay this won't have a one size fits all answer, as there are different plans in Medicare and the ACA, and other factors come into play (like where you live & if you're close to where the imaging machines are, if you have any doctors & medical advocates willing to help, etc). Very hard to guess even at rough numbers.

I can share that I have a Medicare plan, and am taking it piece by piece. For imaging and doctor visits, I pay a flat co-pay in-network, and a percentage co-insurance out-of-network. If I can make a medical case as to why I need that care/imaging, I may get out-of-network coverage billed as in-network (which saves a lot of money), but can take a lot of time. I can access a rotational CT if someone will order it, but an upright MRI and DMX (digital motion x-ray) are out of state, out of pocket, and out of reach at the moment due to cost of the imaging and the traveling. In the meantime, I research and follow the conservative measures neurosurgeons recommend, gather treatment options, try to find medical allies willing to go to bat for me, and build a case for why I might need surgery if that time comes. On a fixed income, I weigh risk management best I can - can I get a neck brace this month, or do I need compression hose to function? (Or groceries?) If I buy the physical therapy book, can I stretch out PT appointments to once every 6-8 weeks? If I get pay for the imaging this month, will I be able to afford the doctor visit next month?

It'd be useful to look at your explanation of benefits and see what your co-pays are for imaging and specialists. You can petition your insurance to cover an out-of-network doctor for necessary medical care if there's no one in-network (sometimes called "gap coverage"). You may get denied and have to file appeals. You may have to gather evidence, see extra doctors to find someone willing to recommend you need the care you say you need, and take on a lot of the paperwork & phone calls yourself.

The lack of answer and the process can be very disheartening, and I understand the frustration of wanting to know IF it's possible before wasting your time. In a similar position, I wish I had a better answer for you. Poverty and insufficient medical insurance can be an extra-large elephant in the room, but it's good to talk about. If we acknowledge the elephant, perhaps we can figure out some possible solutions by trying and sharing.

 

[Daffodil]

@jeff_w i am wondering if you had any upper body symptoms with your CCI, such as seizures, pain, numbness, neck pain etc. i am sorry if i asked this before.

my neck cramping stopped...it was on an off for a few years. does that mean my neck could have fused on its own but in the wrong place, still compressing in the brain stem?

maybe the antibiotics are targeting the leaky gut, bacterial overgrowth, immunosuppression caused by the brain stem compression?

it is hard to make sense of all this especially when there are no worsening cervical spine symptoms..
thanks!

 

[frozenborderline]

This may have been answered already. If so, my apologies, as I don't have the mental stamina to read a 65-page thread.

How much does CCI diagnosis and treatment cost from initial imaging to neurosurgeon consults to surgery to hospitalization to post-treatment physical therapy? I assume the cost is well into the hundreds of thousands of dollars in the US, since I can't imagine that neurosurgery lasting up to 8 hours (?) is cheap.

Do you need really deep pockets, a willingness to go into debt, or really good private health insurance in the US, possibly through a spouse/domestic partner or parent, to consider going down this diagnostic route, as opposed to an Obamacare plan or Medicare. Would be really helpful to know if treatment is even within the realm of financial possibility before considering getting diagnostic imaging done in the first place. Thanks.

If you are in the US it could cost as little as 0$ or as much as 90,000$ depending on your insurance etc. in my case I paid out of pocket for the mri Bc it was sort of urgent and I knew an upright mri w flexion and extension would likely be denied. That cost 600$. And it will cost 300$ to do a remote consult with dr bolognese, ans 300-600$ for dr gilete to review my imaging. But Fraser Henderson and dr Sandhu would take my insurance if I could wait to do an in person appointment with them. And the surgery would be covered under my insurance

 

[Remi]

What does DMX imaging cost at dr. Gilete? Is it always necessary? @mattie

 

[bombsh3ll]

Also, it looks like UK doctors won’t perform surgery purely because patients have Eds, which is horrendous!

That is where you may actually be better off without the EDS label, so if you do have CCI you may be able to get surgery here.

I only got upright scans after being diagnosed with it.

B xxx

 

[bombsh3ll]

What does DMX imaging cost at dr. Gilete? Is it always necessary? @mattie

I can't remember the cost of the DMX as I had a MR angiogram there too and paid for both, but yes I think he does it on everyone as standard from what I can gather.

The only other thing I would say is confirm with them exactly what scans he wants before you go, as there are no upright scanning facilities there. They mentioned I needed a rotational scan as well as the DMX & I assumed I could get it there, but no.

B xxx

 

[Jackdaw]

@jeff_w Sorry if this question is covered somewhere in this thread but what can someone do if they can’t have an upright MRI because they can’t sit up? Cheers

 

[junkcrap50]

I'm sorry if this has been asked/answered, but I can't read all 66 pages. I did try the search function and couldn't find anything.

Supine vs Standing MRI

1. What is the highest Tesla Standing/Upright MRI available?
   • From what I can find online, the highest tesla Upright MRIs I've seeen is 0.6T. Which is far below the usual 1.2T or even 3T. I would imagine Upright MRI at 3T would be best case scenario, even if it's not in existance.
2. Why did Dr. Bolognese switch from upright to 3T supine?
   • Is there consensus about 3T supine now?
   • Is it because 3T, despite it's disadvantage being supine, provides better imaging?
3. If you had to get one or othe other 0.6T Standing vs 3T Supine, which would you get?
   • Both are available to me.

 

[junkcrap50]

Curious if it is possible to grow out of Chiari malformation? I remembered as a child I had extreme, unexplain migraines. The pain was so bad, taking 1 oxy (as a 10 year old!) was needed to just get me to the ER. I eventually grew out of the migraines and stopped having them, but curious about if one can grow out of the malformation?

 

[Oberon]

Do any Canadians have advice on how to get testing, or know of anywhere in Ontario to get tested?
Alternatively, has anyone travelled and can recommend a place?

Thank you for your help.

 

[Lesm]

Do any Canadians have advice on how to get testing, or know of anywhere in Ontario to get tested?
Alternatively, has anyone travelled and can recommend a place?

Thank you for your help.

Hi @Oberon -

Where are you located?

Unfortunately, there are very few options for either a 3T supine MRI or an upright.

I’m from Toronto and just drove to Buffalo NY (today!) to have a 3T supine done at a place called MRI ProScan Buffalo. Had to pay out of pocket - $600. But totally worth it. They cater to Canadians and no doctor’s order required.

 

[Oberon]

Hi @Oberon -

Where are you located?

Unfortunately, there are very few options for either a 3T supine MRI or an upright.

I’m from Toronto and just drove to Buffalo NY (today!) to have a 3T supine done at a place called MRI ProScan Buffalo. Had to pay out of pocket - $600. But totally worth it. They cater to Canadians and no doctor’s order required.

Hi Lesm,

Thank you for the quick feedback. I'm also in the Toronto area. That sounds like a really good option thank you for sharing. Which doctor was it that works with 3T Supine results instead of Upright? I can't remember and wouldn't mind avoiding reading through the whole thread again .

Thank you.

 

[Lesm]

Hi Lesm,

Thank you for the quick feedback. I'm also in the Toronto area. That sounds like a really good option thank you for sharing. Which doctor was it that works with 3T Supine results instead of Upright? I can't remember and wouldn't mind avoiding reading through the whole thread again .

Thank you.

Hi @Oberon -

My pleasure. Support / info from this community has made all the difference for me... gotta pass that on.

Dr. Bolognese is the only one. Info can be found on @jeff_w ’s site here: https://www.mechanicalbasis.org/neurosurgeons.html

 

[Oberon]

Awesome thank you

 

[hezza]

I'm sorry if this has been asked/answered, but I can't read all 66 pages. I did try the search function and couldn't find anything.

Supine vs Standing MRI

1. What is the highest Tesla Standing/Upright MRI available?
   • From what I can find online, the highest tesla Upright MRIs I've seeen is 0.6T. Which is far below the usual 1.2T or even 3T. I would imagine Upright MRI at 3T would be best case scenario, even if it's not in existance.
2. Why did Dr. Bolognese switch from upright to 3T supine?
   • Is there consensus about 3T supine now?
   • Is it because 3T, despite it's disadvantage being supine, provides better imaging?
3. If you had to get one or othe other 0.6T Standing vs 3T Supine, which would you get?
   • Both are available to me.

Hi @junkcrap50, what imaging you get depends a great deal on which neurosurgeon you are sending scans to as each one has a different preference. Check out Lesm’s post on this page for a link to the neurosurgeons & how to contact them. They will tell you what scans they prefer. By the time I sent my scans to Bolognese he was only requiring supine MRI 1.5T or higher. (I don’t know why he switched his preference) But the reply from him after viewing them was ambiguous. I would prefer a clear cut diagnosis based on imaging instead of “try cervical traction with a pt, if you get dramatic results give us feedback & we’ll set up a videoconference.” So I am now contemplating contacting Gilete to get the imaging he requires & do a videoconference with him at least to get a differential diagnosis. It feels out of my reach to afford the surgery without getting it approved thru insurance so I’ll probably be limited to Bolognese for surgery but he hasn’t been very helpful on diagnosis so far.

 

[wastwater]

I have a rare genetic condition and have seen chiari mentioned
Also narrow spinal canal

 

[mattie]

What does DMX imaging cost at dr. Gilete? Is it always necessary? @mattie

Every patient I have talked to that went to Barcelona did have a DMX scan. Costs for DMX scan: € 250,- Costs for personal consultation: € 300,- Costs for online evaluation of scans: € 260,- (all 01-2019)

 

[bombsh3ll]

But the reply from him after viewing them was ambiguous. I would prefer a clear cut diagnosis based on imaging instead of “try cervical traction with a pt, if you get dramatic results give us feedback & we’ll set up a videoconference.”

My reply from Dr B didn't even state that, just that I had no CCI. But it was cranial settling that Dr G diagnosed, which I understand Dr B only diagnoses with some kind of traction scan. I am not having anyone pull on my head, that could make things so much worse! It seems like the only way I can know for sure is to have the surgery.

B xxx

 

[Daffodil]

Hi @Oberon -

Where are you located?

Unfortunately, there are very few options for either a 3T supine MRI or an upright.

I’m from Toronto and just drove to Buffalo NY (today!) to have a 3T supine done at a place called MRI ProScan Buffalo. Had to pay out of pocket - $600. But totally worth it. They cater to Canadians and no doctor’s order required.

you can get a 3T MRI here but i am in the process of trying to get it done. it takes over a year

 

[ScottTriGuy]

you can get a 3T MRI here but i am in the process of trying to get it done. it takes over a year

@Alvin2