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

[bombsh3ll]

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]

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]

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

 

[Bowser]

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]

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

 

[bombsh3ll]

@Marelica Hi and welcome!

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

B xxx

 

[Marelica]

@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]

@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

 

[Daffodil]

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

there is a surgeon in czech too....

 

[Mimi81]

@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

BUT I have recently been diagnosed with a CSF leak, which actually far better explains

Was it Dr Gilete who gave you this Diagnos as well?

 

[SuhasSN]

@Marelica
I am ME, POTS patient onset after acute viral fever
I would like to know how did You take consultation of Dr Gilete (remote or direct consultation by visiting Barcelona) ?
If You had remote consultation What all reports does Dr Gilete needs like ( MRI , CT) to diagonise CCI , AAI and other structural problems ?
does He provide online remote video consultation ?
what is the process to take his remote consultation ?

 

[SuhasSN]

@bombsh3ll

I am ME, POTS patient onset after acute viral fever
I would like to know how did You take consultation of Dr Gilete (remote or direct consultation by visiting Barcelona) ?
If You had remote consultation What all reports does Dr Gilete needs like ( MRI , CT) to diagonise CCI , AAI and other structural problems ?
does He provide online remote video consultation ?
what is the process to take his remote consultation ?

 

[Bowser]

Got my evaluation from Dr. Gilete. In terms of CCI and AAI, sadly nothing terribly definitive. He has given both diagnoses as POSSIBLE instead of conclusively giving a positive or negative diagnosis.

Report snippets are attached to this post. I also got some diagnoses regarding lumbar and sacral spine but they seem to be asymptomatic and weren't mentioned anywhere else in the report.

I shall proceed to get an MRV, as I still strongly suspect intercranial hypertension to be the primary cause of my symptoms. I have a constant "heavy head" feeling, constant brain fog which increases in severity whenever I try to concentrate on something, a stiff (but not painful) neck, facial pain, and other signs to indicate IH may be the ultimate culprit. I was also diagnosed with empty sella three years ago, but Dr. G strangely seems to have made no mention of it.

 

[SuhasSN]

@Bowser
I am from India suffering from severe ME after dengue fever.
Have u sent upright images or supine images only?
When did u sent it and by how much time u got reply?

 

[Bowser]

@Bowser
I am from India suffering from severe ME after dengue fever.
Have u sent upright images or supine images only?
When did u sent it and by how much time u got reply?

Hi Suhas. I am from India as well. I sent supine images. Dr. G took one and a half months for the evaluation.

 

[SuhasSN]

@Bowser
Did u sent CT scan in rotation along with supine MRI?
I also strongly suspect intracarnial hypertension for me we can compare our images to find something common

 

[Bowser]

@Bowser
Did u sent CT scan in rotation along with supine MRI?
I also strongly suspect intracarnial hypertension for me we can compare our images to find something common

Yes rotational CT scan as well. But AAI was also diagnosed as only possible and not definitive.

I have no idea how to read the CT scans. But I posted my MRI scans here before: https://forums.phoenixrising.me/threads/my-mri-imaging-for-cci-evaluation.78284/post-2241998. My own amateruish measurements were quite a ways off from Dr. G's.

Empty sella should also be visible on this MRI.

 

[Bowser]

Has anyone done cervical cineradiology at any place other than Gilete's clinic? Amy says it can be done with any xray machine but most people lack the know how. I want to do it at my local scan center.

 

[Bowser]

Is cervical cineradiology only for assessing subaxial instability or can it help confirm a possible diagnosis or CCI?

 

[lagarto]

Diagnosed with CCI and AAI by dr Gilete in person. He said I was a very clear case.

He mentioned that he sometimes got people with ME who he did not have anything structurally wrong that he could find, and while I have no reason to doubt him, it's not the same as hearing from someone who has been in and gotten told they don't have it. I also don't know why he chose to tell me this, but from context my guess is that it was to emphasise that structural issues is not a universal root cause for ME.