Question: Hi, I have one of the most unique apparent (though still heretofore undiagnosed) conditions that may ever be reported, which I have been living with, unbelievably, for years. It is secondary to a whole prior-existing set of abnormalities that resulted from a research-chemical-induced coma, which altered my nervous system, long-term, also in a way that has never before been seen.

I have a perforation affecting the ENT region, high in the throat, that is fully opening access to the cranial cavity.

I have been swallowing foods, fluids, ice cream, beverages, directly into my cranial cavity, where it has been affecting my brain. This is no joke.

The most challenging part of this journey has been the lack of diagnostic capability borne by the standard medical approach.

I have proposed a specific type of test, or protocol and approach, for MRI that would be virtually guaranteed to uncover the issue.

Please examine the attached materials. I have included the relevant portions of my entire story, down to about 100 pages of summary.

I have even been posting onto posting sites like CraigsList in order to get attention and help onto my case. (Posting material is attached, which helps introduce the matter generally to one who isn't aware of it).

I need an in-depth and comprehensive analysis and, ultimately, full support from a radiologist regarding the specific diagnostic approach that WILL work. My case is extremely unique, and so it is important to read and discover exactly why a standard MRI of the skull, alone, does not suffice, why my customized approach does work, and why imaging centers and radiologists should be prompted to follow our directives QUICKLY.

***

The goal, is to analyze this case comprehensively, in a manner that will allow the creation of proper medical support of the proper handling of my case--from one radiologist, to any of thise subsequent ones that I may approach, within my own country, in order to give them reason to take this case SERIOUSLY.

THE BEST INTRODUCTION
to the matter,

may be constituted by the following two things--

(A) first, a conversation that I had with the AI ChatGPT (GPT-4), which analyzes this part of my case, and which analyzes and seeks to construct and verify the optimal radiological or imaging approach. (To note, I didn't approach the AI for creation of this--I did the research myself, and have just used this AI conversation in order to demonstrate to ***other HUMANS*** that the issue is legitimate and serious

(found here-- https://youtu.be/rS_2z7_TmGE?si=wRgYagD9JCu72fNt);

and,

(B) the introductory posting of mine onto CraigsList, which describes what I am looking for, and why.


Regarding the very important particulars, they are comprised within a three-part pdf document, to be uploaded for your review.

It contains, notably,

(I) in-depth conversation and exchanges with MRI centers and radiologists, where it is demonstrated WHY there has been this hard-to-grasp disconnect between the fact of the matter of the issue, and the successful obtaining of the diagnostic solution that bridges the gap between where I am now, and a true medical solution. No such solution can take place without proper diagnosis; and,

(II) videos, both of the type of MRI sought generally (one that uses pineapple juice during a dynamic, real-time scan, which is used in order to act like a tracer so that it can be determined whether any of it ends up within the cranial cavity after swallowing, as well as other videos of mine that review other similar perforation of mine that have developed within other portions of my GI tract, and how those scans were mismanaged, such that I've heretofore remained wrongly deprived of the essential diagnosis.

All of these, together, form a holistic and comprehensive representation and basis upon which accurate and well-informed assessment can be made.

(B) the introductory posting of mine onto CraigsList, which describes what I am looking for, and why.


Regarding the very important particulars, they are comprised within a three-part pdf document, to be uploaded for your review.

It contains, notably,

(I) in-depth conversation and exchanges with MRI centers and radiologists, where it is demonstrated WHY there has been this hard-to-grasp disconnect between the fact of the matter of the issue, and the successful obtaining of the diagnostic solution that bridges the gap between where I am now, and a true medical solution. No such solution can take place without proper diagnosis; and,

(II) videos, both of the type of MRI sought generally (one that uses pineapple juice during a dynamic, real-time scan, which is used in order to act like a tracer so that it can be determined whether any of it ends up within the cranial cavity after swallowing, as well as other videos of mine that review other similar perforation of mine that have developed within other portions of my GI tract, and how those scans were mismanaged, such that I've heretofore remained wrongly deprived of the essential diagnosis.

All of these, together, form a holistic and comprehensive representation and basis upon which accurate and well-informed assessment can be made.

Doc,

I appreciate you reaching out in reply, even though I see from your page that you may not be a radiological or imaging specialist..

I can use ANY and all support on my case, particularly from individuals who are licensed medical professionals, and thus have some authoritative weight and standing within the medical community.

Your acknowledgment of my circumstances is highly appreciated as well, as it provides a form of validation for me, and of the difficulty that I have faced.

The most critically valuable thing that you have offered, thus far, has been your statement, that,

"This [unique, custom imaging approach suggested by you, the patient][,] is an innovative approach, and it may be worth considering if other methods have been unsuccessful. ... Overall, I believe that you have presented a compelling case for further investigation."

The fact is, Doctor, that,

***YES***, other (standard) imaging routes HAVE been unsuccessful, for the reason that, by their nature AS APPLIED TO THIS SPECIFIC CASE, they have insufficient practical levels of test sensitivity and/or test specificity, in order to reliably confirm or rule out the presence or absence of the issue.

For this reason, as you yourself admit, such an approach would be worth considering. Thank you for ADVOCATING, even if informally, thus far, for the proceeding down these lines for a better diagnostic route.

However, you have offered the statement that,

"However, it is important to note that this test is not yet widely accepted, and there is no guarantee that it will be successful."

I agree with the first part of this statement of yours, that it is not yet WIDELY accepted. (Moreover, it is for exactly this reason that procurement of this manner of approach has been difficult here in the US.)

However, doctor, I respectfully disagree with the second, latter portion of your statement, where you say that there is no guarantee that it will be successful.

A smart investigational approach, or smart test design, is reflected by high measures of test sensitivity or test specificity. Where the test is naturally so well-fitting by its design such as to reliably indicate what is there, and to reliably indicate true underlying absence in the face of a negative test result, then the test can be said to be virtually close to "a guarantee."

The important thing to recognize about this approach, is that--as far as I can tell and do believe--the design is so intuitive and also free of pitfalls, that, in the event that such an underlying condition does exist, there should be virtually NO chance of missing the signs of the presence of the u ndelaying dysfunction with THIS specific test, properly conducted.

The reason for this is the use of a bright, high-signal teacher or contrast agent, within a field containing a remainder of tissues and volumes that can, scientifically, not have anywhere CLOSE to the level of brightness or high signal strength. Therefore, if even the slightest few drops' worth of swallowed fluids were to effuse into the cranial cavity, there would be a very conspicuous splotches of pixelates areas of inordinately bright-whute areas, which would normally be impossible. (In one of my videos, referenced within my documentation, a similar phenomenon is already displayed within a previous MRI of mine. It was just essentially ignored by doctors, leading to further and prolonged delay)

It is for this reason that the test is worthy to undertake--because it has a likely very high measure of both test sensitivity and test specificity.

I see you're an internal medicine specialist.

Another doctor on here, an ENT specialist, has been in communication with me in order to help get me to XXXXXXX where we can co duct the scan. I am all but ready to buy the plane tickets--but, before I do, I require, for prudence sake, an actual RADIOLOGIST to **confirm** and corroborate that this approach not only CAN be done and is WORTH doing, but that such radiologist him- or herself will secure or perform the investigation.

The other doctor and I are currently trying to peg down a radiologist in order to be on our team or otherwise at least make a kind of endorsement of the investigational route here proposed

Do you have any radiologists in your networks or associations, that may be able to help?

You are strongly welcomed to message me directly via WhatsApp, +1 718 360 6651, in order to continue discussion. I am really trying to save my life before the damage becomes too severe.

We can even make a WhatsApp group, and continue from there. While I have the support of an ENT specialist, perhaps the support of a general or internal medicine practitioner such as yourself can also be of significant value.

Thank you again for reaching out. Let us continue to discuss in more detail over WhatsApp, and see what possibilities it may be that we can create

P.S. The reasons for the persistent preservation of these perforations is also interesting, medically, and is also worthy of further discussion.