Tag: DISH

Circle Game – Merry-go-round

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There’ll be new dreams, maybe better dreams and plenty
Before the last revolving year is through
And the seasons they go round and round
And the painted ponies go up and down
We’re captive on the carousel of time
We can’t return, we can only look behind
From where we came
And go round and round and round
In the circle game

And go round and round and round
In the circle game

Joni Mitchell

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This morning I had yet another scan, a CT scan to test MY diagnosis of diffuse idiopathic skeletal hyperostosis (DISH). This based on my interpretation of a lung CT scan which included data on the spinal column.

“Diffuse idiopathic skeletal hyperostosis (DISH) is a type of arthritis that affects tendons and ligaments, mainly around your spine. These bands of tissue can become hardened (calcified) and form growths called bone spurs where they connect to your bones. DISH can also cause bone spurs in your hips, knees, shoulders, feet and hands and harden bones throughout your body. 

DISH, sometimes called Forestier disease, often doesn’t cause symptoms and is usually found when you have an imaging test for another problem. Some people have pain and stiffness in their  back that may get worse over time.” 

The GP has asked the radiologist specifically so we should get a specific answer. It will then be on record and “official” if indeed the formal diagnosis is made.

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This brings to the end a flurry of medical appointments and scans. Perhaps there will be a hiatus. I have a GP appointment late next week to pull threads together. Then I have a urologist “finger” appointment to discuss my elevated prostate specific antigen (PSA) level in early August. They may order a biopsy {yippee}, but perhaps we are not there yet.  

I am due a CT cardio angiogram at some stage before the hip operation.

A number of the threads will probably go nowhere, be left with no actions.

Of late I have been wondering, “does modern medicine with its endless testing and so-called preventative measures {like statins} actually make you ill? Is it some weird self-fulfilling prophecy?”

There certainly is tendency to obsess about health engendered thereby. What are my cholesterol levels like today? Have I had too many units of alcohol?  Will I die of health related anxiety or a stress induced hypertensive episode? Is the world getting a tad obsessed by medical metrics?

Buggered if I know…

What it looks like is maybe an autumnal new hip, perhaps followed by a second in early spring assuming I can hack it. Which means in summer ’26 I might have a little less pain and a little more flexibility. I am not expecting much.

Off-compound interaction is likely to remain low and we will have to sell the house to get something smaller and more suitable. The blighty or Brittany question will raise its head. Aside from that I do not see any great shakes. I have emailed a couple of people about dreaming.

In general people are vey busy, they have lots on their plates and I am functionally irrelevant to the wider world. I am an anomaly to the mainstream. No biggie…

A recent dream has pointed at some kind of engagement with mental health. Implicit in this has to be anglophone. I am not sounding a trumpet call of excitement. The world out there is a minefield. If someone can get sacked from their high profile job for a single racist jibe whilst half pissed, it is a strange and disproportionate place. Best to say fuck all then. That is the take home message.

I know that I am largely out of touch with the younger people. I do not have any personal data on how people younger than 40 think, because I have not interacted with any. It looks such a  dangerous minefield out there and it makes me so glad that I am not in my erstwhile role in “pastoral care”.

The dreaming has not dreamed in, any vision of the future. I note that in the year 2015 when I had my colon cancer operation there were precious few dreams. Maybe as I approach surgery later, they will cease in a similar manner.

Maybe the painted ponies have stopped going up and down for a while, a brief respite, while other merry-go-round users climb aboard. Soon the garish music will start anew and the ride will begin again….

The Holy Trinity – Fat Fags & Booze

~ quantumdreamer ~ Leave a comment

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Brixton Prison, Jebb Avenue London S.W. 2 Inglan

it was de miggle a di rush hour
hevrybody jus a hustle and a bustle
to go home fi dem evenin shower
mi an Jim stan up waitin pon a bus
not causin no fuss

when all of a sudden a police van pull up
out jump tree policemen
de whole a dem carryin baton
dem walk straight up to me and Jim
one a dem hold on to Jim
seh dem tekin him in
Jim tell him fi leggo a him
for him nah do nutt’n
and ‘im nah t’ief, not even a but’n
Jim start to wriggle
de police start to giggle

Sonny’s Lettah – Linton Kwesi Johnson

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Isn’t it funny that when you wait a long time for a bus at the bus stop near Jebb Avenue on Brixton Hill, there are none then all of a sudden three arrive at once?

Every weekday morning for around five years I waited at that bus stop.

Last Friday I had a radio-nuclide bone scan, Tuesday I had an ECG and comprehensive cardio ultrasound, tomorrow I will have overnight monitoring for sleep apnoea, Monday I will start taking industrial grade laxatives with a colonoscopy due Tuesday afternoon and next Friday I am due a CT scan to check for diffuse idiopathic skeletal hyperostosis (DISH).

What a fun-filled and action-packed time I have.  That is quite a lot to cram in. That is a lot of buses.

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Tomorrow I will get fitted for various monitoring including cardio. Later, they may go one stage further and do a hospital admission with full electroencephalography (EEG).

Given hip pain, enlarged prostate and hot weather, I am not sure they will get a good data set.

I don’t know what gizmo I am getting tomorrow. BUT if there is an EEG it could easily generate an anomaly which they may struggle to explain. I know from before and self-test that I can flat-line a fast Fourier transform frontal lobe EEG within the S:N ratio. If this happens in a sleep study it might raise questions or get ignored. I would be an anomaly.

The hospital version has EEG. It may never happen.

As a researcher one is trained to look out for anything unusual. I have a low parathyroid hormone level which seems anomalous. It makes my research bells go ting. It does not seem so important to others.

It seems to me that the consensus is coming around to the idea that the root cause of many of my ailments is being ascribed to the Holy Trinity, fat, fags and booze. My high iron levels will get adjusted during any hip operation by blood loss, in the first instance.

In terms of the Holy Trinity I only have fat left to renounce.

Whenever I watch a medical video, say on a part of the endocrine system, I think to myself that is a whole lot of variables which you are asserting to be interrelated yet you only have very few data points. Is that not a bit of a stretch?

I suspect that I would have been a shit medical student, too many questions. I would struggle with the exams.

In a fortnight’s time I should have a few more pieces of information, including my putative diagnosis of DISH.

Looking at the bus timetable there may be a wait……after a fun-filled and action-packed week.

Touch wood, cross fingers etc.

Life and Dreams Diverge…

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Over the last few days or so I have been getting some vivid dreams. They refer to things not at all concerned with or relating to, our current life, our physical plane reality. There is not a lot I can do with these dreams.

On the horizon at some stage as yet unspecified is a bi-lateral hip replacement operation. This may / may not offer something of a new lease of life in terms of mobility and relative absence of pain. The diffuse idiopathic skeletal hyperostosis suggests that osteophytes will grow subsequent to surgery reducing the useful life of implants. My thoracic spine will get ever more fused and perhaps extend cervical. I will become a proper stiff.

It is increasingly obvious that due to handicap and low physical capability the garden here is too big. Short of winning the lottery we need to move. The current idea is to move house before any operation because I will still be able to lift heavy stuff for the move. As things stand, and unless I get ill, I do not need to see the GP doctor until September for asthma medication which means that the French side of the orthopaedic line of inquiry is on-hold. I have a follow up for colorectal cancer next week which may require industrial grade laxative and a colonoscopy. Yippee, what fun! My ten year anniversary present.

There is no reliable physical plane evidence to deter from the disabled-enabled nanna-flat trajectory. There is nothing on this plane to suggest any use for me. There is nothing holding us here. We could legally move to UK or Ireland. We have become accustomed to Breton rain so Ireland is less of a push than it once was.

It is pretty clear to me that my lack of social viability means we need to find somewhere out of the hurly burly to some extent. Every time I interact something seems to go wrong. Something grates, people get edgy and uncomfortable.

At the moment I am getting a bit bored with the matinal pain.

The decision funnel towards proper down-sizing and retirement pinches, gets tighter. No other options are available / making an appearance. The blog and patent renewal choices must be made soon. And we have had an income tax form, strangely the tax people in France are hyper organized and mega efficient…

With the price of propane increasing and my lumberjack skills failing, the cost of running the house gets ever more prohibitive.

The end-game looks quiet. The idea of a supported retirement flat is more attractive.

I am due an appointment with a UK consultant rheumatologist soon and a short visit to Jersey will help us understand if we can hack being surrounded by anglophones and just how important Waitrose, Café Nero and Pizza Express are. I will have a better idea if there is any immuno-rheumatic cause at play in my bone–skeletal problems.

The dreams are currently significantly diverging from real physical plane life. I know on one hand that I have an unusual and eclectic set of knowledge given my orthodox science background in my earlier London incarnation. It remains an anomaly and not much more than that.

We probably need to stick the house on the market soon…

I will have to explain to the estate agents that I don’t think like other people and that I have zero desire to discuss prices until hell freezes over. I will not negotiate nor make any counter-offer, sorry. I am not sure that I will be able to get that across.

I see a glitch coming. People just don’t / won’t get it.

Anyway, it is sunny outside. The stray cats Felix and Gandalf have been fed. Felix is not looking well and we are not sure how long he will be with us. This once totally stray cat lets me pick him up on my foot! He lets me handle him and I can feel his ribs.

Madame Canard was on the pond this morning with half a dozen ducklings. Each year she raises two broods over the fence in the “swamp”. Monsieur Canard has been pacing up and down smoking, metaphorically.

The trajectory looks pretty set…life and dreams diverge.

Above My Pay Grade

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In quite a few, often intelligence / spying films, out of the USA people use the admonition “it is above your pay grade” to silence junior colleagues and prohibit their access to information. Others say “it is above my pay grade” to plead ignorance. Those on high salaries and with positional power have access to more information and things best kept away from lowly plebs which would not, could not possibly, understand. There are secrets only for the worthy, the elite etc.

I think I have inadvertently upset the applecart here, by examining the CT and MRI images, even having the temerity of printing captured images out. With one exception, our female GP, there has been a weird knee-jerk reaction to being presented with these images. Clearly it is a job demarcation problem for a non qualified pleb to impinge on the wisdom and expertise of a specialist radiographer. Oops, my bad. It is above my pay grade to download image viewing software and examine in detail images.

In France medicine is conducted in silos. A doctor asks a specific question of the radiologist in their silo. He/she replies in short coded statements to the adjacent silo. There is no need for the non specialist to examine images. It is efficient if not comprehensive.

I have had X-rays of my knees and feet done today. They look to me, at first pass OK, so we wait for the written write up which I will get before any GP appointment.

This morning, I have been looking at this Nature Comms Article

Genetics implicates overactive osteogenesis in the development of diffuse idiopathic skeletal hyperostosis

Anurag Sethi, J. Graham Ruby, Matthew A. Veras, Natalie Telis & Eugene Melamud

Nature Communications volume 14, Article number: 2644 (2023)

There are some nice graphics.

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Since I have been looking into diffuse idiopathic skeletal hyperostosis (DISH) I keep reading that the causes are not well understood. Given that it is widespread I ask the question, “why has there not been vast research in the area? It would be of enormous benefit to find a cure / assistance.”

It is a disease of old gits and nowhere near as sexy as cancer or brain surgery. There must be petabytes of images by now.

Clearly it is above my pay grade to ask such a presumptuous question of deity.

According to Nature Comms. I clearly have enhanced overactive rates of osteogenesis.

Does that mean that I get more boners than average? No.

Curiously osteoarthritis seems genetically counter-correlated with DISH. Technically I have a fair fit with the left column above.

Because I have no pay grade any more, no positional power, and no power by association it is probably best that I keep my gob shut and my nose out of the affairs of people way more important than I. I am a relatively poor, increasingly disabled socially non viable being. No way am I a big cheese in the grande fromagerie of life.

Obvs it is for the high and mighty to discuss things amongst themselves. The lofty air up there is way above my pay grade.

It does beg the question, “If you were to come visit me after your death, what would you say, what might you ask?”

“What might you expect me to say or do?”

In my opinion if I were writing a grant proposal, I might start….

DISH detrimentally impacts on the quality of life of more than 15% of the adult population therefore it is both timely and cost effective to understand better the aetiology of the disease so that early stage prophylactic interventions can be developed. Thereby enhancing both recurrent healthcare cost reduction and quality of life outcomes.

But that is above my pay grade.

DISH What Next – Prognosis Not Good

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As Toyah might say, “It’s a mystery”. If you read a review article from 2023 claiming that something is unclear in journalistic language understatement, it is clear that they do not know why Diffuse Idiopathic Skeletal Hyperostosis occurs nor how come. There are correlated but not proven causative factors.

They could call it “strange bony growth disease we don’t understand” but that would impinge on the sacred deity of jargon.

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idiopathic

adjective

1: arising spontaneously or from an obscure or unknown cause

2: peculiar to the individual

An idiopathic disease is any disease with an unknown cause or mechanism of apparent spontaneous origin.

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Eshed, I.

Imaging Characteristics of Diffuse Idiopathic Skeletal Hyperostosis: More Than Just Spinal Bony Bridges.

Diagnostics 2023, 13, 563.

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https://doi.org/10.3390/diagnostics13030563

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“The body of knowledge regarding imaging characteristics has grown over the last decade. The current Resnick and Niwayama criteria for DISH correspond to an endstage diagnosis of the disease, in which the spine is already ankylosed. A newer set of classification criteria is warranted for diagnosis in an earlier, pre-ankylotic stage of the disease.

The pathogenesis underlying this disease is still unclear, and although it is thought to be a degenerative disease, it has been suggested that similarities to SpA may imply an inflammatory basis. Imaging studies further characterizing the disease may potentially aid in deciphering the currently obscure pathogenesis of DISH.”

SpA is spondylarthritis or ankylosing spondylitis

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I would have to place myself in the advanced stages given what I have read.

The physiotherapist today said that the prognosis for me is not good. The bony growths will probably grow and I will get more and more rigid and unable to bend. Because of the rigid spine I will increasingly be at risk of spinal fracture. The rigid part is long.

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The “rigid” part of the lever may snap.

If the DISH spreads to my cervical spine there are risks associated with oral intubation causing cervical spine fracture. It makes general anaesthesia slightly riskier.

Hip replacements are more likely to suffer prompt bony over growth. This means that they would probably last less long before failure.

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“Heterotopic ossification is a common complication following total hip arthroplasty in patients with DISH, occurring in 30% to 56% of cases. In contrast, patients without DISH in the cited studies had a much lower rate of heterotopic ossification, ranging from 10% to 22%.”

Prognosis

The prognosis of DISH varies based on the severity of the condition and the symptoms experienced by the individual. While DISH is a progressive disorder, it typically advances slowly. Most individuals can manage their symptoms with conservative treatments, such as physical therapy, pain management, and maintaining an active lifestyle to preserve range of motion. However, in some cases, DISH can lead to significant complications, including severe spinal stiffness, nerve compression, and difficulties with swallowing or breathing if calcification extends to the cervical or thoracic regions.

Rarely, surgical intervention may be necessary to relieve compression or correct severe deformities. Overall, while DISH can affect quality of life, especially in advanced stages, it is not typically life-threatening. With proper management, many patients are able to maintain a functional level of mobility.

Luo TD, Varacallo MA. Diffuse Idiopathic Skeletal Hyperostosis. [Updated 2025 Jan 10]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2025 Jan-.

Available from: https://www.ncbi.nlm.nih.gov/books/NBK538204/

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There are other knock on effects, bony growths in weird places including aorta and heels.

I may get have to get used to the terms ossification and calcification. A brief inspection of the internet struggles to find much on severe DISH. It seems taboo or just not click worthy. My CT images look top end advanced.

I have not yet had a formal diagnosis. I have learned that this might make me a DISHie and that there are support groups on line. They say that it can take ages, years, to get diagnosed and that most have co-morbidities, one of which is often ankylosing spondylitis.

I might, in due course, become a lab rat and a participant in the on line groups.

My days dancing at the Bolshoi had to end sooner or later…

Asking the Right Questions – CT Scans

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One of the things raised by the spine surgeon was the need to have comparable CT scans over time. I remembered that I had a benchmark post cancer op CT scan not long after we arrived in France. Incidentally this time a decade ago, 2015, I was collecting “blood in poo” data whilst in Malta prior to kicking off the colon cancer investigation.

I have been unable to get the imagery service to remount the full data {yet}, but like a squirrel storing nuts I have images.

Sometimes thinking differently to others does not go down well. Questioning is not always welcome.

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” I told you I was ill”

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I have fished the images out. The radiological report was focussed only on the possible recurrence and metastases of cancer. The scan was reported as normal.

Close examination reveals some spinal anomalies in 2020 which suggest “bone” growth has been going on for five years.

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One can see a “bony” anomaly to the image left hand side of the thoracic spine. The aorta, round circular grey thing, is not yet displaced significantly to the right in the image. This image is a mirror, right in the image is left in my body frame.

Looking down at the pelvis area we have.

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To my untrained eye there is spinal torsion towards the image left, corporeal right. The sacroiliac joints are asymmetric.

The final image looks distinctly unbalanced and odd. It does not sit well with my need for symmetry and although it could be an artefact, it is a pretty big one. This “deformity” if it is one could explain much…

A year prior to this I had a titanium “nail” inserted into my left femoral neck/head to repair a facture.

I had to wait three days to be operated on. Not much was said to me about the whole thing.

In principle then I now have before and after CT scans to demonstrate the growth of whatever it is on my spine…

The radiologist answered all the questions asked of them but did not comment on the spinal column, which seems bit odd to me. But I do not know what common clinical practice is. One could talk about CT images ad infinitum. There needs to be some focus.

Not sure what if anything to do with this…

The Illusion of Communication

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Shaw suggested that the primary problem with communication was/is the illusion that it is taking or has taken place.

People rarely bear this in mind. They tend to imagine and assume. They can imagine communication to be good and effective when it is anything but.

There is a big problem in groups. Communication within a group feels like communication has happened but communication outside of the group has not even started. That decided in a group is rarely discussed or conveyed outside the group. Acceptance and agreement is assumed outside the group because consensus has been arrived at in group. It can be a huge surprise that no inclusion outside of group has ever happened. It is a group-mind illusion.

We might call this the crony problem.

As a speculative example. It is possible that health care professionals are discussing my case amongst themselves and maybe one day, someone will have to present it as a fait accompli to me. I will not have been involved in the discussion and therefore very unlikely to trust or accept the fait accompli just because someone said so. If I feel by-passed or ignored then my response is unlikely to be compliant-acceptant. Because discussion has occurred within peer group the illusion of communication is solid and held to be true perceptually. There is in this case a national and language barrier to boot and add icing. Inter group consensus amongst the French is important to them as far as I can see. Foreigners are less important.

I have noted multiple variations on this theme over the years. Where “they” discuss me, maybe conclude and then never even mention it to me or check their understanding of me with me. I am not being paranoid. I have anecdotal evidence in a number of cases.

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Last Monday I had a CT scan of my chest and lungs prescribed by a lung specialist. Given my asthma, COPD and past history as a smoker, this is not a routine low risk screening. There are some results in my spirometry which need an explanation.

I am yet to receive the narration of the results from the consultant radiologist.

I have had a week in which to down load the images, start a loan of some medical CT imaging software and investigate the CT data. I have access to fibre broad band and can do AI image searches on CT snapshots. I have used the software to measure the dimensions of the (hopefully) bony growth on my thoracic spine and can see that it impinges upon my right lung. {This explains a slight niggle I have had there for a number of years.} I can read articles in medical journals like “The Lancet” and have a fair understanding of the gist.

I have watched videos of radiological grading of COPD, lung nodules and lung cancer staging. I have investigated diagnosis of the bony growth and it looks as though diffuse idiopathic skeletal hyperostosis (DISH) is the best putative diagnosis. I already know that this growth cannot be reversed. I have identified one lung nodule and think I can see where my ribs, broken in a rugby injury, have healed.

 I have no idea who is meant to follow up, if at all. I am in a vacuum.

Any subsequent conversation is unlikely to be aware or informed by/of the scope of my investigations. I’ll speculate that it will not be assumed to be thorough.

Any initial point of subsequent communication will have assumptions on each side.

I have asked that if there is anything important someone gets in touch. Silence suggests that there is no problem. This assumption could be fundamentally flawed in a clinically significant manner. People are busy and in medicine often pressure prompted. The body on the table in front of you is more important that the one in a computer file and the end of a telephone line.

The whole thing, like so many things here grinds to a halt of inertia. Who knows who is responsible or is in charge of taking this forward?

Loose…means that balls get dropped…and then it is very hard to overcome the inertia once more…

Laisser tomber – BOF….

Coming to a Head – Decisions

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Quite a while back someone suggested to me that I write a course on “Decision Making” and stupidly I accepted. Without blowing my own trumpet unduly, that course is widely applicable up to the very highest levels. But of course, no big-wig or big-cheese, would ever accept that they need to learn and otherwise be educated about their quasi-divine decision making.

I use this little slide to frame things.

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At the moment various indicators are incoming apropos of an impending decision.

I’ll speculate that I am way more decisive than average and that I am unafraid to make unilateral decisions. I rarely feel the need to discuss, chin-wag or otherwise chew things over.  This appears to surprise some.

To give an example.

A few months back I had a zoom call with a European VC I was acquainted with a long time ago. I was seeking clarity as to how the VC community might see me based upon my past enterprises and what to do with my current circumstances. He said that, based upon the narrative I gave him about a company I co-founded, I would be considered “difficult” to work with and that “French deals don’t travel”. He hinted at “reputation” but would not be pressed. On this basis I dropped any plan to look for VC funding to start a company and shelved the faint notion of a France based start-up. The omens are not good. There are barriers, showstoppers from the get-go.

One can not always know when one is aiding / advising a decision. It can be unwitting or conscious. One could be a deciding factor without having any idea thereof.

The recent CAT / CT scan data concerning a largely fused thoracic spine consistent with a diffuse idiopathic skeletal hyperostosis (DISH) diagnosis is a factor to add to the decision making funnel. There is no treatment, it will only get worse. This is a factor suggesting that house downsize increases in importance. This DISH will not ameliorate my COPD as the bony growth is already impinging on my right lung.

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Soon we will test the back to blighty notion with a visit to Jersey to see how it feels to be surrounded by people largely anglophone. This notion points at moving to a low-cost, less desirable, region of the UK property market. A significant contrary factor is the anecdotal poor state of the NHS. The French system has been very generous to us in terms of funding and accessibility to care and prompt diagnostics.

We are in a beggars cannot be choosers state in that we don’t have hundreds of thousands of pounds to pay for private healthcare. Things here are in motion and work well. Don’t fix what is not broken.

There are no real personal anchors for us here, to keep us tethered. A lot is due to happen in the next month or so and that is when the funnel will close. This blog and my patent are up for renewal, for example.

Things, whatever they may be, are coming to a head, or in other terms the funnel is starting to pinch. These funnels are unidirectional and not reversible.

The feeling is that “things” are coming to a head. The fact that I looked out the slide above is indicative…