Tracking CCI / AAI MRI & Treatment outcomes

I have been tested for CCI / AAI / Chiari / Spinal Stenosis with specific scans and tested

  • Positive

    Votes: 78 75.7%
  • Negative

    Votes: 25 24.3%

  • Total voters
    103

JenB

Senior Member
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@frozenborderline It’s also unclear if any other people have had a full remission. Most people seem to need not just fusion, but often additional surgeries as well for things like additional instability, tethered cord, styloid removals, stents, etc. This is so complex, and hard to pin down what is coming from what. I’m so sorry for your struggles.
Several people have had full remission but you are right, it requires diagnosing and treating...everything. And a lot of PT.
 

JenB

Senior Member
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This is a big conern i have. Ill have to have surgery pretty soon at this rate, but like you said without knowing why our colegen us going down, fear im putting the cart before the horse. Jen and jeff were very lucky to have
It cleared up before surgery.
What was cleared up before surgery?
 

bensmith

Senior Member
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2,195
@JenB whatever was causing/started the cci/cord process.

I’m paranoid ill get cci surgery and still have severe nuero pem because covid is still in my brain. Or whatever is happening.
 
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JenB

Senior Member
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1,892
@JenB whatever was causing/started the cci/cord process.

I’m paranoid ill get cci surgery and still have severe nuero pem because covid is still in my brain. Or whatever is happening.
I don’t think we understand all this well enough to know. It’s certainly possible you can have both instability and a virus in your brain. Jeff and I didn’t “resolve” anything pre-surgery, though. Our pathologies were what was causing all/most of our symptoms.
 

bensmith

Senior Member
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@JenB yes thats true. I just assumed you guys had thrown the kitchen sink at the problem like many of is do, possibly clearing the infection. But if that was not relevant in your case my apologies.
 
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Learner1

Senior Member
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9,296
Location
Pacific Northwest
@JenB yes thats true. I just assumed you guys had thrown the kitchen sink at the problem like many of is do, possibly clearing the infection. But if that was not relevant in your case my apologies.
You can read jeff_w's story on his website:

"MEchanical Basis - Craniocervical instability, Atlantoaxial Instability, Myalgic Encephalomyelitis, ME, CFS" https://www.mechanicalbasis.org
 
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Location
Bucharest Romania

Tella

Senior Member
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389
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237
Yes you may. Not great. Whole story is in this thread. Bit of a long read though. Short versions / summary can be read here and here. Even shorter version: CCI surgery did not improve my ME / dysautonomia symptoms.
so sorry to hear this but im glad u are better nonetheless
may I ask if there's any thread where all who had surgery share how it went or a poll?
as I keep hearing many benefitted from surgery but so far I can only see @jeff_w and @JenB who had major improvements. not really the majority of ME patients by any stretch. thanks
 
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May I get a link pls? However A few doesnt sound promising to me either
The waiting list is at least six months currently (how long i've been on it now). It seems to be the only place other than here where there are large groups discussing cfs and cci.
 

Markus83

Senior Member
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287
Maybe it makes a difference by whom you got operated? I think they use different procedures, too? Is there anyone who got substantial improvement after surgery by Gilete? Maybe there's not so much a problem with surgery, but more with the person who does the procedure? Only questioning, have no own experiences with any of those doctors.
 

bensmith

Senior Member
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The short of it is this. There is no way to know if surgery will help. There are preferred doctors, but that still doesn’t gurantee anything.
 

Tella

Senior Member
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237
The waiting list is at least six months currently (how long i've been on it now). It seems to be the only place other than here where there are large groups discussing cfs and cci.
Why so long?? Like it’s some secret society with treatments nobody knows about...if it helped so many people many people would already do it and get cured
Anyway I’m yet to hear of ‘maaaany’ who’ve been helped truly. Why wouldn’t all these people post here..... so far Jeff @jeff_w and Jen... @JenB that I know of. Others aren’t even that much better
 
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Why so long?? Like it’s some secret society with treatments nobody knows about...if it helped so many people many people would already do it and get cured
Anyway I’m yet to hear of ‘maaaany’ who’ve been helped truly. Why wouldn’t all these people post here..... so far Jeff @jeff_w and Jen... @JenB that I know of. Others aren’t even that much better
I don't know, you would have to ask someone inside the group. One of the rules you accept when you apply to join is that you won't share any information you learn inside the group with outsiders BTW.