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

[mattie]

just FYI, dr. Bolognese has been sued 20 times throughout his practice and is being sued currently by 3 women

Already discussed earlier in this thread:. https://forums.phoenixrising.me/ind...a-cause-of-your-cfs.56908/page-10#post-978203

 

[Daffodil]

@jeff_w I am wondering why you had fusion and not disc replacement...

thanks!

 

[Daffodil]

it would be great if disc replacement were an option for us because its a lot cheaper i think....though i could be wrong

 

[Daffodil]

i was reading some earlier posts on this thread and saw someone say liberation therapy was a failure for MS. i know the trial failed but arent there also a lot of people who benefited from the surgery?

anyway, anyone know how long it takes for dr. gilete to ask for the MRI once the questionnaire is completed?

@jeff_w i wonder why you chose dr. bolognese and not henderson or gilete for your surgery? arent all spine surgeons capable of doing cervical fusion? why do we need these specialists? is there something in particular they do to make sure pressure on the brain stem is alleviated?

thanks

 

[Gingergrrl]

P sure Ashley would love all these suggestions, in fact think has some comorbidities ? Maybe dm? Thx so much

@debored13 I am just catching up now and wasn't sure if you wanted me to PM you the info on my doctors or PM it to Ashley? If so, what is her avatar name on PR?

I don't understand. What is out of network benefits?

@Inara, I was not sure if anyone answered this question for you? In the US, if you have a PPO insurance, then you can see a doctor who is within the network or outside of the network (but going out of network is much more expensive for the patient). Then there are some doctors who do not accept any insurance whatsoever and are purely private pay.

So if a doctor was out of network with someone's insurance, but they could still afford to pay their portion, than it is still a realistic option. It really depends on the individual situation. If I was doing a one-off consult with a doctor, I would be able to pay my portion. But when I had two yrs of IVIG, I had to go to an infusion center that was considered "in network" with my insurance or it would not have been an option. I was VERY lucky that my infusion center was in network. I hope that makes sense!

 

[Daffodil]

I am the one that voted no, because my memory was faulty and thought I was checked for this... Looking back, I was not.

This is interesting because my headache I have is where the neck meets the base of the head in the back. It comes and goes. When I go through good phases it doesn't really bother me, when I go through bad phases it comes roaring back.

Just wanted to clarify for the 'No' vote I casted.

me2! this is the spot where i feel like my ME/CFS is coming from. when i am really sick, i feel like ants are crawling inside right at this spot. over the years, i used to cry and beg my mom to massage that area. it has gotten better but if its CCI, this will be a big piece of the puzzle.

i remember reading about an early autopsy they did when an ME/CFS patient committed suicide in the UK. They found active viruses in the brain stem so I always figured the feeling must be from infections in there....but now i an not so sure

 

[Belbyr]

me2! this is the spot where i feel like my ME/CFS is coming from. when i am really sick, i feel like ants are crawling inside right at this spot. over the years, i used to cry and beg my mom to massage that area. it has gotten better but if its CCI, this will be a big piece of the puzzle.

i remember reading about an early autopsy they did when an ME/CFS patient committed suicide in the UK. They found active viruses in the brain stem so I always figured the feeling must be from infections in there....but now i an not so sure

I believe virus has been found in a good chunk of cfs patient's spinal fluid. Something like 60% compared to controls at 20%. I actually do not like to have this area touched or manipulated.

 

[Daffodil]

I believe virus has been found in a good chunk of cfs patient's spinal fluid. Something like 60% compared to controls at 20%. I actually do not like to have this area touched or manipulated.

hmm interesting. i wonder how that might tie into the CCI issue

 

[frozenborderline]

So I still need to get manual traction administered to see I I am surgery candidate before having consult with bolognese. This is proving to be the most difficult thing. I have a referral for pt already but can’t get home pt and am basically too sick to go out. Maybe could go out once I guess. But also the pt people don’t want to necessarily just do traction and would need some kind of order to do this, which I don’t think bolognese has given. If it’s really cci they would be nervous about doing anything without guidance which I think is good sign that they are conscientious ? But uh idk what to do and I’m pretty sick rn

 

[frozenborderline]

@debored13 I am just catching up now and wasn't sure if you wanted me to PM you the info on my doctors or PM it to Ashley? If so, what is her avatar name on PR?



@Inara, I was not sure if anyone answered this question for you? In the US, if you have a PPO insurance, then you can see a doctor who is within the network or outside of the network (but going out of network is much more expensive for the patient). Then there are some doctors who do not accept any insurance whatsoever and are purely private pay.

So if a doctor was out of network with someone's insurance, but they could still afford to pay their portion, than it is still a realistic option. It really depends on the individual situation. If I was doing a one-off consult with a doctor, I would be able to pay my portion. But when I had two yrs of IVIG, I had to go to an infusion center that was considered "in network" with my insurance or it would not have been an option. I was VERY lucky that my infusion center was in network. I hope that makes sense!

dm @ashleyO if you don’t mind thanks!

 

[frozenborderline]

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:


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).

good thought, hip, thanks. Has anyone looked at nandrolone /deca durabolin?

I’ve heard eds patients advised to eat hydrolyzed collagen too, and vitamin d

 

[frozenborderline]

https://www.ehlers-danlos.com/2015-annual-conference-files/Henderson_0.pdf
For anyone interested, this is a very long document I think for a presentation Henderson did on this condition/comborbidities. He discusses everything from objective measurements of this condition to nutritional and pharmacological strategies in EDS. But what you all may find interesting is some stuff where he connects the mechanical to the molecular. @Hip , @jeff_w ,
And there’s part specific to intercellular calcium influx after injury which I know people were interested in on this forum.

 

[Gingergrrl]

If it’s really cci they would be nervous about doing anything without guidance which I think is good sign that they are conscientious ?

If you possibly have CCI, I would be very hesitant to do PT with a random physical therapist who was not well-trained in this specific condition.

dm @ashleyO if you don’t mind thanks!

Thx and I will send her a PM tomorrow and tell her that you asked me to (just so she is not confused why I am contacting her)!

And there’s part specific to intercellular calcium influx after injury

Can you explain this part? Do you mean that neck injuries could affect intercellular calcium influx (as in calcium channel autoantibodies blocking the CA+ Channels) or something completely different?

 

[frozenborderline]

If you possibly have CCI, I would be very hesitant to do PT with a random physical therapist who was not well-trained in this specific condition.



Thx and I will send her a PM tomorrow and tell her that you asked me to (just so she is not confused why I am contacting her)!



Can you explain this part? Do you mean that neck injuries could affect intercellular calcium influx (as in calcium channel autoantibodies blocking the CA+ Channels) or something completely different?

Stretch injuries in nerve tissue causing intracellular calcium influx if I recall. Maybe that’s not that exciting since it’s a basic mechanism of cell excitation and death.

This pt had specific experience in cci and me/cfs but also doesn’t do home pt. And I would still need an order specifically for traction only

I admit I’m skeptical that they won’t just try and make me do a bunch of exercises even if I manage to get there

 

[Inara]

Can you explain this part? Do you mean that neck injuries could affect intercellular calcium influx (as in calcium channel autoantibodies blocking the CA+ Channels) or something completely different?

From the given reference http://www.jneurosci.org/content/21/6/1923.long:

Diffuse axonal injury (DAI) is one of the most common and important pathologies resulting from the mechanical deformation of the brain during trauma. It has been hypothesized that calcium influx into axons plays a major role in the pathophysiology of DAI.
...
Rather, our results suggest that traumatic deformation of axons induces abnormal sodium influx through mechanically sensitive Na(+) channels, which subsequently triggers an increase in intra-axonal calcium via the opening of VGCCs and reversal of the Na(+)-Ca(2+) exchanger.

In the abstract, they don't say which type of voltage gated calcium channel (VGCC). (In the text they say it's the N-type.)

It seems there is an indication that increased cytosolic calcium (here: in axons) is correlated with diffuse axonal injury. That makes sense to me because apoptotic processes underlie many neurodegenerative processes, amongst others (apoptosis is cell death), and apoptosis is regulated by the IP3/Ca2+ pathway. So maybe, axon damage (e.g. via stretching) causes ER stress that cannot be eliminated otherwise so that apoptosis is initiated. (Edit: This is not pathological like with antibodies, it's a needed process.) But they don't mention apoptosis.

From the paper:

Although stretch injury in our model induced a substantial rise in intra-axonal Ca2+, removal of extracellular Ca2+ and subsequently injuring axons resulted in virtually no change in the level of Ca2+. These data suggest that the source of the accumulating intra-axonal Ca2+ was predominantly extracellular. However, a possible delayed Ca2+ release from intracellular Ca2+ stores such as the endoplasmic reticulum and mitochondria cannot be excluded.

IF apoptosis plays a role, ER and mitochondria do so, too.

Edit: I don't mean disrespect, but my feeling is the authors maybe don't have a deeper understanding of cellular metabolisms. So personally I think, it would be great if things like this are followed up including cellular metabolism experts. (I just know from my own experience a certain amount of clinicians lack that knowledge.)

 

[rel8ted]

True, that has been reported online--however none of those lawsuits resulted in censure by the medical board. Doctors (and I'd think especially neurosurgeons) are often sued.

My dentist was actually sued by a patient once because her daughter thought the cosmetic work he did on her teeth "made them look like horse teeth" so, yeah there could be a lot of reason for lawsuits and a lot of lawyers willing to earn commissions on them.

 

[rel8ted]

i was reading some earlier posts on this thread and saw someone say liberation therapy was a failure for MS. i know the trial failed but arent there also a lot of people who benefited from the surgery?

anyway, anyone know how long it takes for dr. gilete to ask for the MRI once the questionnaire is completed?

@jeff_w i wonder why you chose dr. bolognese and not henderson or gilete for your surgery? arent all spine surgeons capable of doing cervical fusion? why do we need these specialists? is there something in particular they do to make sure pressure on the brain stem is alleviated?

thanks

@jeff_w explained in an earlier post that he put extensive research into choosing a neurosurgeon, as should anyone planning on having neurosurgery.

I am having a hard time processing the fact that you would question the need for doctors who are literate in CCI/AAi or any other neurosurgery. This is your spine, skull, and brainstem we are talking about. Why would you want anyone but the top surgeons near that area?

it would be great if disc replacement were an option for us because its a lot cheaper i think....though i could be wrong

I understand that the cost of this surgery may unfortunately be out of reach for most patients. i have been there for many years myself. However, again this comes down to whether or not you want to risk spending the rest of your life dealing with the results of a possibly shoddy surgery performed by a cheaper surgeon VS. having a competent, literate, expert perform the surgery the first time.
This also applies to the quest to find some alternative surgery that may do "almost as well" for a much lower cost and finding out later you didn't get what you expected.

I am saying this from the perspective of someone who has been very ill for almost 3 decades, is you would rather use a cheaper doctor or try a different procedure, nobody is going to get in your way. But I never, ever, not once ever have considered short cutting any medical procedure that involved being cut open in order to save money. I waited several years to be able to have an eye surgery because I didn't want just any guy doing it because 1.) I didn't want to be blind in one eye when I woke up and 2.) I wanted to be able to look at myself in the mirror without regret & had seen the results of some not so perfect surgeries. In other words, I did not want a Ronald McDonald surgeon working on my Capital Grill eyes. I honestly do wish you the very best in finding whatever it is you are looking for. @jeff_w has been so gracious as to point the way for those that are in need of surgery to the very best resources the entire world has to offer for those with this issue. I don't expect him to come back and say that some cheaper way is just as good & it honestly feels like a waste of time to beat that drum. I wish you all the best in finding your alternative.

 

[frozenborderline]

@jeff_w explained in an earlier post that he put extensive research into choosing a neurosurgeon, as should anyone planning on having neurosurgery.

I am having a hard time processing the fact that you would question the need for doctors who are literate in CCI/AAi or any other neurosurgery. This is your spine, skull, and brainstem we are talking about. Why would you want anyone but the top surgeons near that area?



I understand that the cost of this surgery may unfortunately be out of reach for most patients. i have been there for many years myself. However, again this comes down to whether or not you want to risk spending the rest of your life dealing with the results of a possibly shoddy surgery performed by a cheaper surgeon VS. having a competent, literate, expert perform the surgery the first time.
This also applies to the quest to find some alternative surgery that may do "almost as well" for a much lower cost and finding out later you didn't get what you expected.

I am saying this from the perspective of someone who has been very ill for almost 3 decades, is you would rather use a cheaper doctor or try a different procedure, nobody is going to get in your way. But I never, ever, not once ever have considered short cutting any medical procedure that involved being cut open in order to save money. I waited several years to be able to have an eye surgery because I didn't want just any guy doing it because 1.) I didn't want to be blind in one eye when I woke up and 2.) I wanted to be able to look at myself in the mirror without regret & had seen the results of some not so perfect surgeries. In other words, I did not want a Ronald McDonald surgeon working on my Capital Grill eyes. I honestly do wish you the very best in finding whatever it is you are looking for. @jeff_w has been so gracious as to point the way for those that are in need of surgery to the very best resources the entire world has to offer for those with this issue. I don't expect him to come back and say that some cheaper way is just as good & it honestly feels like a waste of time to beat that drum. I wish you all the best in finding your alternative.

In addition I would imagine that almost nobody pays for this surgery out of pocket. Of course the financial cost of finding an insurance company that covers it or has out of network benefits might still be large but many just end up crowdfunsing this stuff unfortunately

 

[Gingergrrl]

This pt had specific experience in cci and me/cfs but also doesn’t do home pt. And I would still need an order specifically for traction only I admit I’m skeptical that they won’t just try and make me do a bunch of exercises even if I manage to get there

I agree and I would be very careful that the PT order is for traction only (if this is what your doctor requests) and that they do not try to push you to do things that you are either not capable of doing or could further injure your neck.

In the abstract, they don't say which type of voltage gated calcium channel (VGCC). (In the text they say it's the N-type.)

Hi Inara... all of this is WAY over my level of comprehension but is there a connection between the N-type VGCC calcium channels and neck injuries or CCI?

 

[Daffodil]

@rel8ted but jeff had cervical fusion. there are a million doctors who do cervical fusion. I am asking why we need doctors who specialize in chiari malformation? that's the part I don't understand. I mean....I thought all spine surgeons would be able to handle things in the brain stem area...that's what they do...? what I mean is..why not a very good surgeon who does a lot of cervical procedures as opposed to the 3 chiari docs....

keep in mind this is not something I have spent any time researching...I have spent the last 26 yrs thinking it was a virus and then lyme

@debored13 I am wondering why I got the MRI because there is zero chance I can pay for this and from what I hear, no one ever gets it covered in Canada