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

[Daffodil]

@debored13 again, very helpful info

so i gave another call to Dr. Gilete's office to see if they had my images and asked if there was a payment plan for surgery. There is not - which makes sense since there would be no way for them to get money from international patients once they leave

I also asked the administrator if she had ever heard of any doctors in Asia who did this sort of surgery in people with hypermobility issues. she said i should join patient groups to find out because they dont have any relationships with other doctors. I kept asking and she did say she had heard of a doctor in Iran and one in India....she said 2 patients had come to Dr. Gilete for re-surgery....but I think they were older and had brittle bones, etc. She said re-surgery is not uncommon in these cases

She said Dr. Gilete does his own measurements with the MRI images and is very thorough. He also reads the questionnaire, which is very important. So it sounds like is a comprehensive assessment.

If you want to ask him questions, you can get a skype/phone consult for 125 euros, 30 min. Seeing him in person is more...maybe 300? I cant remember.

I dont know why it is taking so long to get into the BTM group!

xoxo

 

[StarChild56]

There are SO many amazing people on here like @jeff_w. @Gingergrrl, @Hip, @Murph, @debored13, @mattie, @StarChild56 and many, many, many more who I forgot to mention that all have one thing in common.

I am honored to be mentioned in the list of names here, you are very kind. Words escape me but hopefully the sentiment is conveyed.

 

[Inara]

@Daffodil, what kind of images exactly did you send to Dr. Gilete?

 

[Daffodil]

@Daffodil, what kind of images exactly did you send to Dr. Gilete?

I sent what Jeff told me to: MRI of the cervical spine with extension, flexion, rotation, and neutral. Also, MRI of the craniocervical junction. Both MRI's were done in an Upright MRI

xo

 

[frozenborderline]

My sister has been trying to get into The Beyond the Measurement group on my behalf for months . This is egregious. I understand the mods have a backlog, but over a month is messed up. They need to make other people into moderators if they can’t handle it. This is an important resource we now don’t have access to. I wonder if someone could make a post on behalf of everyone in phoenixrising that can’t get into the group.

 

[jeff_w]

My sister has been trying to get into The Beyond the Measurement group on my behalf for months . This is egregious. I understand the mods have a backlog, but over a month is messed up.


They need to make other people into moderators if they can’t handle it. This is an important resource we now don’t have access to.

Last month, I offered to become a mod. They didn't accept my offer.

I wonder if someone could make a post on behalf of everyone in phoenixrising that can’t get into the group.

Jen Brea did this last month. Apparently, the mods didn't budge. So then, I personally messaged every one of the mods. I offered to help vet join requests or become a mod myself. Once again, the mods didn't accept my offer.

 

[frozenborderline]

Last month, I offered to become a mod. They didn't accept my offer.



Jen Brea did this last month. Apparently, the mods didn't budge. So then, I personally messaged every one of the mods. I offered to help vet join requests or become a mod myself. Once again, the mods didn't accept my offer.

Thanks for trying!
This is such a pain in the ass. Gatekeeping of diagnostic resources is already such a recognized issue for very ill people, I would expect other disabled people to realize this. I guess I will keep trying. Did they share any of their reasoning of why they wouldn’t do this? You’d think they’d actually be curious about all the newly diagnosed pwME w cci

 

[Daffodil]

why would this group not want people to join? i dont understand. are the doctors who help them being vilified somehow, as CFS doctors were earlier on ? what are they afraid of?

i have seen a couple of forums we can join, about chiari .... but i doubt that is the same as what i might have

 

[roller]

@JenB @jeff_w

if you were in, how many members does this closed facebook group have?

 

[rel8ted]

Last month, I offered to become a mod. They didn't accept my offer.



Jen Brea did this last month. Apparently, the mods didn't budge. So then, I personally messaged every one of the mods. I offered to help vet join requests or become a mod myself. Once again, the mods didn't accept my offer.

Also waiting.
In fairness, they are probably afraid of ill-willed people getting in there and causing drama. I'm sure though, that some of us could use those valuable resources.

 

[Gingergrrl]

There are SO many amazing people on here like @jeff_w. @Gingergrrl, @Hip, @Murph, @debored13, @mattie, @StarChild56 and many, many, many more who I forgot to mention that all have one thing in common. They carry on from day to day with persistence and eschew doubt, they do not blame their circumstances. They all find any possible way to overcome whatever obstacle is in front of them. They are the most valuable resources we have here because they know how to make things happen.

Thanks @rel8ted and that is very kind of you to say. I really hope that sharing my experience has been helpful for other people.

Jen Brea did this last month. Apparently, the mods didn't budge. So then, I personally messaged every one of the mods. I offered to help vet join requests or become a mod myself. Once again, the mods didn't accept my offer.

Wow, that is really too bad and you would be a great moderator for that group @jeff_w. I've never tried to get into it since I do not have CCI but I am hoping that they let all of you guys join! I used to post in some private FB groups about MCAS, IVIG, my calcium autoantibody, etc, and they had great people from all over the world and lots of very helpful information.

 

[Hip]

I don't really understand why people create closed Facebook groups to discuss medical matters.

If you have something to say or something to offer that can greatly benefit others people's health, why would you want to keep that information within the conversations of a small closed group — conversations that are not indexed by Google, and in this case, it seems hard to even to get access to the group?

Sure, if you want to talk about personal matters you may want some privacy; but when you are talking about medical procedures that may help others, why would you keep it to yourself?


EDIT: I've just noticed that the Beyond the Measurement *Chiari Awareness* Facebook group is in fact open as far as their posts are concerned. So what I said above does not apply so much to this group. (But there are some medical Facebook groups which are completely closed, and offer no publicly accessible information).

 

[dreampop]

Philadelphia collar is cheap and can relieve some symptoms but nowhere near as effective as halo. It should not be used as diagnostic for that reason. It may help some but if you don’t feel great from it it doesn’t mean you don’t have cci. It is not adjustable but is more supportive than the adjustable ones are so you will be better off getting it and shoving a towel under it or w/e. Again, nothing besides getting the scans is diagnostic and sometimes even that is not diagnostic and people have to get different scans or get invasive cervical traction to b diagnosed

Thanks for responding. My neck and ribcage feel unstable. Been trying to see a doc to get this looked at but it's proven quite difficult.

 

[humanrising]

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?


@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 alleviate

Just wanted to add to "the Liberation technique" for MS or for anyone with problems with venous blocks or tangled veins etc. the idea ( very simple explanation) is that the blocks created by this blocks oxygen blood flow to brain and or heart. they put in balloons and for a fair number of people it helped some dramatically. the balloons can be short lived so they also put stents in...…problems with the stents and some people dying has given this a black eye. I think you are referring to Standford losing a patient and two others with complications. they did only stents I believe. Just as Jeff has said here about using THE neurosurgeons who do this all the time and understand the underlying health problems that are involved in these conditions. There are other who are still helping people looking at blockages or damaged collapsed veins

there is one place here in Atlanta that does CCSVI diagnostic's and treatment. I spoke to the doctor super!!!! great man. they have very special ultrasounds to diagnosis and then they also try to figure out which block affects which part of the body via acupuncture needles to see if it opens the area ( only temp) but enough to see if they can treat what maybe underlying cause. now please know that I was very tired when I spoke to him and I could have some of this wrong. they don't do stents and maybe not even balloons. here too.... what they do the testing and treatment is not the same as going to UCSF to get a " transcranial doppler " done. always a good chance that one would get the BS we often get, nothing here that is "gross or obvious" it shouldn't have anything to do with your symptoms.

there are going to be problems with invasive treatments but I believe in trying to get treated even if there is some risks. but this is just me. the last thing I want is neck surgery, scares the you know what out of me. but I also am so grateful jeff posted this here because for people like me who have had head and neck injuries and major neck pain etc. we should know about this...knowledge is power or maybe in this case money and knowledge!

I wanted to look at brain stem herniation at the very beginning of my hell. but no one would listen. I read about it "tunning the brain" by jay Goldstein. Byron hyde also has on his list that this should be ruled out. I knew that it could be a problem when I read about the liberation technique again another possibility worth looking at for me.
while reading everyone's comments here about the validity and viruses etc. I keep coming back to something that Klinghart said, he believes people are getting more complex illnesses and more severe symptoms from viruses, bacteria, parasites on and on because our brains are more at risk due to EMF cell phone radiation . he feels that the intense level we are being subjected to this is making the bbb more permeable allowing organisms that may not have been able to cross over to the brain and ( I would assume the spinal cord) able to get in. the reason I add this is it is hard to know what opens us to this illness syndrome. maybe for some of us damage to the spinal cord, veins, brain from injury allows pathogen's that are bodies were able to keep in check that the brain can't. just spit balling here.
just grateful people here put it all on the table for us to look at and think about. I have never had super high titers for anything we have tested for, anti virials have never been a real pull for me due to my history and symptoms but for others its very clear that this is there illness path....neck and brain issues YES . ok tired and going on sorry

 

[humanrising]

sorry, I don't get how folks reply to a thread and its just pink on the other persons comment. somehow it is all pink .opps!

 

[Daffodil]

this whole thing is becoming more and more compelling. i didnt even know brain stem herniation / pressure was a thing that could happen!

i wish there were more papers on how herpes viral infections can maybe? cause breakdown of ligaments or something....then one could begin to put some pieces of the puzzle together - for some people, at least.

i would like to set up a poll to find out how many of us had neck issues before developing the illness or neck issues worsening or starting after an infection... sorry not sure if that makes sense, brain very bad

xo

 

[mattie]

I don't really understand why people create closed Facebook groups to discuss medical matters.

EDIT: I've just noticed that the Beyond the Measurement *Chiari Awareness* Facebook group is in fact open as far as their posts are concerned. So what I said above does not apply so much to this group. (But there are some medical Facebook groups which are completely closed, and offer no publicly accessible information).

https://www.facebook.com/Beyond-the-Measurement-Chiari-Awareness-116621518394783/
is indeed open but that is not a group and has no info. It's a regular FB page.

We're trying to get accepted into:
https://www.facebook.com/groups/200576390027503/

I agree, a closed FB group for this makes no sense. They may think that is better for privacy reasons, but seem to forget they are on FACEBOOK . Yeah Facebook’s really a safe place to share your intimate medical data. Facebook really cares about your privacy. They asked me for my photo-id when I wanted to join again.

A forum similar to this one would be a much better option. A forum has far better categorisation of topics and posts. And it's so much cleaner. Facebook can never match the functionality of a proper set up forum like Xenforo.

I’d be happy to set one up ...

 

[mattie]

sorry, I don't get how folks reply to a thread and its just pink on the other persons comment. somehow it is all pink .opps!

Look for the position of the "End Quote" , that would be: /QUOTE between brackets. []
That end quote shortcode should be a the end of the quote, but is now probably at the end of the whole message. You can cut and paste it to the right position.

 

[frozenborderline]

There must be a way to put pressure on the mods to let us into “Beyond the Measurement”. I’m a little too tired to write something elaborate but would be down to have a little informal petition touching on some of the things ppl said here—emphasizing its gatekeeping important knowledge, in a way that affects disabled people poorly

 

[Daffodil]

there are several forums already for chiari and/or EDS but we would need one especially for CFS/ME patients, I think.

i wish i could ask the members of that facebook group if there are any members who somehow managed to have successful surgery in asia. just to see....

i was reading about the different kinds of prolotherapy...also would love to discuss that

ugh i dont even know if i have this yet but my mind wont stop ruminating on it lol