Tracking CCI / AAI MRI & Treatment outcomes

[JenB]

@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]

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]

@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.

 

[JenB]

@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]

@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.

 

[Learner1]

@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

 

[CristianSerious]

Several people have had full remission but you are right, it requires diagnosing and treating...everything. And a lot of PT.

What PT modalities do people find the most helpful ?

I have found these PT's that give advice, but the modalities are different:
http://www.physiocure.org.uk/
https://jeanniedibon.com/
https://mskneurology.com/

Looking forward for your reply.

Kind regards,
Nasaud

 

[Tella]

https://www.medserena.com/kontakt/
You can find all Upright MRI clinics in Germany at the bottom of that page. Diagnosed by Dr Gilete in Barcelona.
I would recommend to read as much as you can on this subject before moving forward.

May I ask how u are doing post surgery?

 

[mattie]

May I ask how u are doing post surgery?

Yes you may. Not great. Whole story is in this thread. Bit of a long read though. Short version / summary can be read here .Even shorter version: CCI surgery (C0-C2 fusion) did not improve my ME / dysautonomia symptoms.

 

[Tella]

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

 

[bensmith]

In the facebook group there are a handful in cfs remission now.

 

[Tella]

In the facebook group there are a handful in cfs remission now.

May I get a link pls? However A few doesnt sound promising to me either

 

[bensmith]

Its the cfs neck spine group. You have ask to join then it takes months to get in.

 

[internetjoe]

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]

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]

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]

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

 

[Tella]

Its the cfs neck spine group. You have ask to join then it takes months to get in.

Could u give me the link pls

 

[bensmith]

https://m.facebook.com/groups/MECFSBrainSpine/

 

[internetjoe]

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.