KASM Flashcards
INTRO A: SET UP
The issue started in September 2018 when I used the topical anti-aging drug retinoic acid (pharmaceutical vitamin A=.
INTRO B: SET THE STORY RETINOL
- Id been using over the counter retinol for a year prior to this but in September 2018 I began using topical retinoic acid which was purchased online without a prescription.
- Usually this requires a doctor’s prescription, but it was marketed online without one and without proper instructions,
- I was not aware of the risks and using it all over my face in quite large quantities for 7 days and I noticed rapid significant changes in my face in the exact areas to which I had applied the cream.
INTRO C: WHAT I NOTICED/WHAT HAPPENED
I noticed a marked and significant loss of subcutaneous tissue volume in the areas to which I had applied it over the 7 days - predominantly around the eyes, my temples and along the jaw line.
WORSEN + EFFECTS
- (T a k e i t s l o w)*
- Cont 2 worse - dram alt*
- Sharp jaw nl lps reg*
- LOT rnd eyes n behind eyeballs rcd sign prsmbl lss prv lg nw smll*
- Templs Midface Glabella*
- Back of head bony*
- These changes continued to worsen and my face shape over the weeks altered quite dramatically and rapidly due to tissue loss.
- What was a sharp and angular jaw line became rounded, and this whole area including the naso-labial folds and lips have regressed in size.
- I’ve lost a LOT of tissue around and seemingly behind my eyes, and my eyeballs have progressively recessed in significantly, presumably due to tissue loss behind the eyes, and so my eyeballs which previously looked large and now small.
- I lost a lot of tissue around the temples and the mid face and my glabella region.
- It also affected the back of my head, removing a lot of the tissue there so it now feels very bony and painful to lie on - it’s as if much of the soft tissue cushioning has gone.
PALATTE AND DENTAL ARCHES
I also experienced what feels and looks to be a narrowing of the dental pallate, with the placement of my teeth on my gums very different and uneven and a a narrowing of the dental arches, when I brushed my teeth the kinesthetic memory of my mouth suddenly changed. Photos also show this (SHOW PHOTOS) .
OTHER SYMPTOMS
I also experienced a lot of other side effects including photophobia - intense migraine when looking into the light, dizziness and confusion, hair loss, brittle hair, pain around the skull, brittle nails, yellow skin.
DIAGNOSTIC PROCESS
What we went through
- AUTO-IMMUNE AND PET
Initially thought auto-immune condition or inflammatory condition and referred to for PET-CT at London Clinic There was no inflammation found and extensive blood tests showed no auto-immune condition.
- DIAGNOSIS OF VIT A TOX BY ORME
There’ve also been other conditions of rapid facial tissue loss investigated, such as Parry Romberg’s Syndrome and Ehler’s Danlos Syndrome and these were also ruled out. As I have had symptoms indicative of vitamin A toxicity, such as hair loss, bone pain, brittle nails, yellow skin, photophobia, nausea and pupillarity problems, I currently have a working diagnosis of vitamin A toxicity, secondary to retinoid use.
- BAYOUMI AND OTHER CONDITIONS RULED OUT
I also consulted with another max fax Mr Sherif Bayoumi, who documented the extensive tissue loss in my face, that is the thinning of the subcutaneous adipose tissue, in the areas of application, as well as hair loss, but found no signs of any other pathology.
- ORME: BONE MARKERS AND ISOTOPE
In terms of effects on the bone, saw consultant endocrinologist and bone specialist Dr Orme last year who found that bone markers appeared to be normal, but there was an isotope bone scan carried out and found to be an abnormal uptake of tracer within mandible, ((that would fit with my experience of a narrowing of the dental arches)). Mr Bayoumi felt that my lower jaw was much further behind upper jaw, causing an overbite of the mandible and we wanted to see if this has gotten any worse since this started.
INTRO TO IMAGING
Imaging done
A. NO IMAGING DONE PRIOR
In terms of imaging, unfortunately there was no imaging done before the issue or at the start of it - which would be ideal for comparative purposes.
B. MRIs PROVE ONGOING
(Unsure if I include this)
I had an MRI in May 2019 and another MRI in November 2019 which showed that there had been further subcutaneous tissue thinning around the temporal fossa within just those 6 months, and this matched by experience, the experience of my partner and those around me that this condition is still ongoing.
The radiologist looking at the MRI described it as a thinning of the subcutaneous adipose tissue and stated it was unlike any other kind of tissue loss that he had previously seen.
C. MRI not before May 2020 do
However, the first MRI was done in May 2019, and the majority of the tissue loss occurred immediately after the retinoid treatment in September 2018, so it did not evidence the extent of the change.
D. PET MUCH CLOSER TO START ALTHOUGH SIGNIFICANT ALREADY LOST
Obviously if I had had imaging before, that would be been the best, only imaging that I had closest to the start of the problem was the PET CT in December 2018. It’s not a before and after
scan 1: Referred to London Clinic Aug 2019 carry out
I WAS REFERRED TO THE LONDON CLINIC in August 2019, to carry out the scan again to assess comparative interval change with the previous CT that they had carried out on the recommendation of my endocrinologist.
He told me it should be done on the same machine as previous imaging but he could not refer me himself as he was unable to do so through the NHS for the London Clinic which is private. So I went through an online scan referral company.
As the problem is predominantly located in the cranio-facial area it was agreed to do a scan this time of the head and face and not the whole body so I wouldn’t be exposing myself to the radiation.
Scan: Mix up wrong area (referring dr)
However, there was a mix-up and the referring doctor - an online doctor whom I had never seen before - sent over some incorrect notes - so the scan ended up being of my throat and some of my face without the full skull and back of head. although I had paid and agreed for the areas scanned to be the full face including forehead neck
Scan mix up aquistion settings
Also, I SPECIFICALLY requested the same machine acquisition settings to be used for the second scan in August as had been used for my first scan in November, as I had been advised to, in order to ensure that the 2 scans were comparable for assessing intimate interval change and it was confirmed to me that this would be done. Yet this did not occur.
Therefore the scans were incomparable for the intended stated purpose.
2nd opinion
I later approached another specialist for a second opinion and they stated they could not assess the 2 scans as the second was of twice the clarity as the first due to different machine acquisition parameters
What I need: London Clinic consented
The London Clinic admitted there were issues here and mistakes were made, they have consented to doing this as this scan was already paid for.But theyrequire a referral from a maxillo-facial doctor.
What I need: Parameter Settings
I’m asking for the scan to be repeated - but just of the head and face, without the PET contrast this time, using the same parameter acquisition settings as per the initial scan of November 2018, so that the 2 CT scans are of comparable clarity to assess interval change.
What I need: Areas to be scanned
In terms of the areas that I’d like to be scanned. The obvious bone changes occurred prior to the first scan (this was already 3 months into the problem). However, I’d like to see if there were any further potential bone changes within the maxilla and mandible causing more of an overbite. Predominantly though, I think it would be necessary to evaluate further tissue loss throughout the face, which has gotten worse since then – particularly around the eyes and temples - where the brows are (gesture), the right (my right) side of the face particularly temporal fossa (+ whatever called above the eye – research) (gesture), as well as the lower facing including lips and naso-labial area and jaw-line, and the back of the head. This has already began before the first CT, but I have lost tissue over my actual skull itself, I used to have quite a rectangular shaped head, but the tissue has thinned so much that it’s now moulded to the shape of my skull and feels so thin that it’s difficult to sleep on at night.
The MRI found that the adipose in those 6 months had thinned as opposed to just been lost (although at the beginning I believe there to have been real loss as there was so much in the weeks directly after the incident) so it appears to be much thinner at the back of my head as opposed to a patchy loss.
Furthermore, there was tissue lost around my throat, neck and even down to my chest, causing loss of definition around the collar bone. I believe this would also be visible on the CT so if the definition around the neck and collar bone could also be looked at.
Emphasise not a before and after
Bearing in mind, this is not a before and after - this was already 3 months into the problem and the most damage occurred in the first 2 months. So it’s not a before and after scan, but just much earlier into the problem so that we can evidence the extent of the tissue loss and see how much it has continued. I unfortunately didn’t have any facial imaging done before the problem – which would make it much easier.
