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

[bombsh3ll]

@bombsh3ll I agree with you that this doesn’t seem likely and would be a red flag. I think you are correct in pursuing this question further and would be very interested in what you discover.

I have been in touch with another couple of people currently in the process of sending scans to Dr G and Bolognese, and will certainly update if anyone else seems to get differing opinions.

Of note, Dr G only felt that I have vertical instability not horizontal or rotational, and I am not sure if the US surgeons insist on traction to diagnose this, so that could account for the discrepancy with me, but the fact that NOBODY that I have come across has been told by Dr G that their scans are normal, and surely some people's will be.

Next steps for me are: CT venogram with Dr Higgins. If normal, then probably trial of invasive traction with Dr G. If that shows positive results then I would definitely have the surgery, but if it didn't, I know I would be worried that it could have damaged me further if there is some minor laxity there.

B xxx

 

[bombsh3ll]

I, like an increasing number of others on here, have sent imaging to Dr Gilete for evaluation of possible CCI. I was given a diagnosis and offered surgery. I sent the same to Dr Bolognese who said no sign of instability, however he did not seem to have reviewed it in as much detail, no measurements etc and I also believe he has different methods of assessing for cranial settling, which was my only diagnosis.

I have however noticed a very concerning pattern though that whilst many patients are receiving normal reports from Dr B, literally everyone I come across sending imaging to Dr Gilete seems to be diagnosed with a structural problem and proposed surgery. This is making me rather suspicious and skeptical.

I have therefore started a separate poll from the general CCI tracking thread to look at results specifically for Dr Gilete.

If you have received a positive diagnosis or been told your scans were normal by Dr G, please vote here! Also please mention if you have had any other opinions whether they match or not!

B xxx

 

[Sarah94]

That does sound suspicious!

 

[bombsh3ll]

I know, I am really hoping someone will allay my suspicions and say their report from Dr G was normal! I am sure a proportion of us will have genuine structural issues, but many will not.

B xxx

 

[Sarah94]

Bump

 

[valentinelynx]

I have however noticed a very concerning pattern though that whilst many patients are receiving normal reports from Dr B, literally everyone I come across sending imaging to Dr Gilete seems to be diagnosed with a structural problem and proposed surgery.

It might be helpful if you could specify how many people you have identified in each of the following groups...

1. How many whose imaging was read as normal by Dr. B were told they were positive by Dr. G?
2. How many received negative reports from Dr B and didn't consult Dr. G?
3. How many received positive reports from Dr. G and didn't consult Dr B?
4. How many had positive reports from both Dr. G and Dr. B?
5. How many had negative reports from both Dr G and Dr B?

 

[Joly]

1. How many whose imaging was read as normal by Dr. B were told they were positive by Dr. G?
2. How many received negative reports from Dr B and didn't consult Dr. G?
3. How many received positive reports from Dr. G and didn't consult Dr B?
4. How many had positive reports from both Dr. G and Dr. B?
5. How many had negative reports from both Dr G and Dr B?

Adding these would be very helpful! I know we've also had one person who received a negative report from Dr B and was later diagnosed by Dr Henderson, it would be useful to add that data in and try to find out if there are any others.

 

[bombsh3ll]

It might be helpful if you could specify how many people you have identified in each of the following groups...

1. How many whose imaging was read as normal by Dr. B were told they were positive by Dr. G?

I am in the above category. As far as know I am the first to get two different opinions. All the others seem to have only contacted Dr G. I would definitely be interested to hear if anyone else got differing results, but mainly if ANYONE was told their imaging was normal by Dr G, as I have yet to see this.

I have heard second hand of two patients being turned down by Dr G, however one was told she needed surgery but was not well enough mentally at the time, the other's imaging was too poor quality to read. So still nobody told their scans are normal.

Of course there could be bias if people disappear from relevant forums after getting a negative result, but it is odd.

B xxx

 

[AnkeC]

Of note, Dr G only felt that I have vertical instability not horizontal or rotational, and I am not sure if the US surgeons insist on traction to diagnose this, so that could account for the discrepancy with me, but the fact that NOBODY that I have come across has been told by Dr G that their scans are normal, and surely some people's will be.
B xxx

I think you will find that Dr G refuses to review anyone in whose scans he can’t see a problem.

In my case I sent in my scans, and then got a response that Dr G was interested in reviewing my case. After that I paid for the report and filled out paperwork. But I definitely got vetted first.

Many others get turned away at that early stage, which explains why everyone who gets reviewed gets a diagnosis.

But I had already mentioned that to you some time back.

 

[Mctavish]

I dont undestand.Are these people sending MRI scans to Dr Gilete and being told they need surgery without having any patient doctor contact ?

 

[Joly]

I dont undestand.Are these people sending MRI scans to Dr Gilete and being told they need surgery without having any patient doctor contact ?

It's my understanding that Dr Gilete offers a distance consultancy service for those who cannot travel to Barcelona for initial testing in which he reviews MRIs along other imaging and several in-depth symptom questionnaires and completes a report based on those indicators, which may include confirmation that the patient qualifies for surgery according to the diagnostic criteria his practice adheres to. If the patient chooses to they may then arrange a skype consultancy session for further discussion of their case, and then if they decide to proceed they can travel to Barcelona for the required further testing and assessment for surgery.

 

[Wolfcub]

Moderator note: post #8 by bombsh3ll, and post #9 by AnkeC have been moved to this thread from CCI/AAI Fusion Surgery Scheduled

 

[Mctavish]

Its wonderful Dr Gilete gives patients this type of service.I would think a mainstream specialist ,finding he suggests surgery without a neurological examination would probably find it somewhat "off piste ". I maybe wrong.

 

[PeeWee]

We e-mailed Dr Gilete a week ago at info@drgilete.com, but we've not yet had any response. We asked for confirmation of Dr Gilete's exact MRI requirements, where & how to send the images, any other information required, cost and how to pay for Dr Gilete's evaluation.

Has anyone else needed to wait over a week for a response to an initial enquiry? Is there another e-mail address which might be better, or should we try a phone call?

 

[Mctavish]

I am in Spain at present..have been in touch with Amy, Gilete's sectetary .I have appt 26th July.I know for a fact they are totally snowed under.Mainly due I believe to Gilete ,like many drs in Spain takes whole of August off work.

 

[suevu]

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.

What I really would like is that he had any other techniques besides surgery, like PRP, I hope he adds it to his treatment options, I will discuss with Amy if there is ani possibility of getting it.

 

[JenB]

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.

 

[Sidny]

What I really would like is that he had any other techniques besides surgery, like PRP, I hope he adds it to his treatment options, I will discuss with Amy if there is ani possibility of getting it.

I’m wondering the same although I don’t get how without some manual manipulation, the condition would improve. Maybe wearing a collar several hours a day and even while sleeping while also doing PRP along with stopping whatever immune mediated attack on connective tissue could prove to be a pretty permanent solution,

 

[nsdn]

How much can surgery with Gilete cost and in what country is it? Thank you.

 

[bombsh3ll]

I believe the current cost is about 60k-70k euros depending on the exact procedure, and it is in Spain.

B x