CCI / AAI / chiari / instability /neck evaluation by Dr Gilete

For those sending imaging to Dr Gilete Barcelona, did you receive a structural/surgical diagnosis?

  • Diagnosed with structural problem on imaging (even if provisional/further tests needed).

    Votes: 8 100.0%
  • Told scans were all fine / no structural problem identified.

    Votes: 0 0.0%

  • Total voters
    8

bombsh3ll

Senior Member
Messages
285
Likes
1,003
Well I don't think you are being fair blaming Dr Gilete for diagnosing CCI/AAI to everyone, prior to visiting him I did an upright MRI scan at Medserena in London and CCI/AAI was appreciated by Professor Francis W Smith as well as ligament hyperlaxity.

Also Gilete has been totally honest with me by telling me how complicated the surgery is and the possible outcomes and it wouldn't pay off in cases like mine with mild fatigue. He offered me the surgery but recommended me not to do it. So no, he doesn't recommed it to everyone.
I'm not "blaming" Dr G as such, & am very interested in going there for surgery myself, I am just concerned that not one single person sending in their scans has been told they are normal. Surely statistically some peoples' will be. Perhaps these people are simply not posting, but I would really love to hear from just one person who had their scans declared as normal by Dr G.

I don’t know if Dr. G is overdiagnosing but I do know Dr. B is missing cases.

If you have cranial settling/vertical instability only, it will not be seen on a supine, static MRI.
My MRIs were done upright, in multiple positions. It concerns me that two surgeons can look at the exact same scans & reach different conclusions (with potentially very different consequences). Perhaps Dr B just doesn't take measurements for vertical instability if you don't have rotational or horizontal, like me?

B x
 

suevu

Senior Member
Messages
127
Likes
196
I'm not "blaming" Dr G as such, & am very interested in going there for surgery myself, I am just concerned that not one single person sending in their scans has been told they are normal. Surely statistically some peoples' will be. Perhaps these people are simply not posting, but I would really love to hear from just one person who had their scans declared as normal by Dr G.


B x
Well if you go there with CFS its verey unlikely that you have a normal scan there keeping in mind we are beginning to see that CFS symptoms (not the disease itself) is caused by abnormalities in that area... It would be like expecting cancer patients with normal oncology tests...
 

bombsh3ll

Senior Member
Messages
285
Likes
1,003
Well if you go there with CFS its verey unlikely that you have a normal scan there keeping in mind we are beginning to see that CFS symptoms (not the disease itself) is caused by abnormalities in that area... It would be like expecting cancer patients with normal oncology tests...
That's a very valid point, but I do not believe CCI to be the only cause of illness for this population, some people will have normal anatomy - just like not everyone with symptoms suggestive of cancer will actually turn out to have cancer on testing. If you took 100 women with a breast lump, most will prove not to be malignant on biopsy. Also, it doesn't explain the discrepancy between surgeons as many of those sending imaging to other surgeons get a negative result. It just bothers me, & I want to be as sure as possible that this is my issue before having surgery.

B xxx
 
Messages
21
Likes
31
In what format should I send the scans? The MRI images are in DICOM format and over 25MB when zipped, but there is a 5MB limit on the website.
 

Marelica

Senior Member
Messages
134
Likes
457
Location
Croatia
Hello to all,
today the report from doctor Gilete arrived.

I am diagnosticated with :
Craniocervical Instability (CCI) - Superior Odontoid Migration (SOM)
Atlantoaxial Instability (AAI)
C5-C6 & C6-C7 : cervical disc bulging

In my home country (Croatia) I have several official diagnoses:
- chronic fatigue syndrome
- impaired autonomic nervous system
 

Marelica

Senior Member
Messages
134
Likes
457
Location
Croatia
@Marelica Hi and welcome!

How do you feel about that and what are your plans?

B xxx
I was expecting that kind of response because I have been hypermobile since childhood.
I probably have some variant of EDS, but in Croatia, we do not have a specialist for the EDS disease to examine me.
In a specific private situation, I have been a widow for two years, living alone.
If I find enough stable person to go to Barcelona with me I think I will opt for surgery.
Of course, first I have to check how much it all costs.
This whole situation makes me sad, but that's what it is.
I came up with a diagnosis that is impossible to come by in Croatia.
I hope to be able to organize to go one step further.
Dear @bombsh3ll, thanks for asking :)
 

bombsh3ll

Senior Member
Messages
285
Likes
1,003
@Marelica I wish you good luck if you do decide to go ahead with the surgery.

Dr Gilete diagnosed me with cranial settling and mild instability c2-4. my imaging seems mild/borderline by comparison to others however my symptoms are not.

BUT I have recently been diagnosed with a CSF leak, which actually far better explains how my illness was caused by an extremely forceful valsalva whereas CCI does not, & shall now be pursuing treatment of this.

I may come back to revisit CCI in the future should I not improve after this.

B xxx