
I was told I would become quadriplegic - Abishek_Muthian
https://abishekmuthian.com/i-was-told-i-would-become-quadriplegic-68c0371e6f05
======
escapologybb
Hey guys, quadriplegic Hacker here.

Yes, truly terrifying situation but becoming quadriplegic does not mean an end
to spending inordinate amounts of money on technology and owning more
Raspberry Pi's and you're willing to admit to publicly.

Not my intent to minimise obviously, but I can move one finger in my head and
I have a job and technology sector that I love.

I think I really just wanted to say that if you're going through this, Chin
up! :-)

~~~
csomar
First, I don't wish for anyone to become quadriplegic.

I have a few questions:

1\. How does your body react to not moving. Part of the problem I face working
in Technology is that I have to spend lots of time in front of the computer.
After a few hours my body needs to move. Does your body need to move? Or are
you fine not moving for all day long?

2\. It might be a bit of a creepy question but I have always wondered. If an
eye lash gets inside your eye, how do you get it out. Is there someone out
there looking out for you for these small details? Also does your eyes still
get tired from looking at the screen.

I'm sorry if these are weird questions. Just a bit curious of how life is for
a quadriplegic.

~~~
escapologybb
First, that is an admirable wish!

Not sure how to answer your questions really, but:

1\. No idea, cannot remember what it's like to have full function have nothing
to compare it to.

2\. Zen like focus.

3\. Life is pretty groovy.

HTH.

------
noir_lord
I have syringomyelia which in the worst case can result in paralysis and the
surgery is one of those 50/50 cases (50% improvement, 50% a _lot_ worse - They
put a shunt into your spine to drain it which means pretty high risk of
infection _in the spine_ ).

Spinal stuff scares the crap out of me but at least the periodic MRI's show
it's stable, so I'll 'just' be stuck with numbness/pain and a limp in the best
case.

I'm glad you did documented this, anyone googling their medical condition (and
everyone does) may find it :), glad you are on the mend as well.

~~~
52-6F-62
I remember being about 13 or 14 years old and sitting in a meeting with my
parents and a few surgeons discussing the probabilities of left-side paralysis
in my younger brother pending a brain tumor removal (roughly the size of a
navel orange, if I recall correctly). That prospect was frightening to
consider... he thankfully survived with few side effects, and no paralysis.

I wish you and the author all the best. People like me who've never had to
stare into that abyss personally can only imagine.

~~~
noir_lord
> People like me who've never had to stare into that abyss personally can only
> imagine.

I found out about the syringomyelia 3 weeks after an 8 year relationship broke
down (she cheated) and my business was failing.

4 years later I'm in a happy relationship with the woman I want to spend my
life with, I have a job I love with people I like and the business is a
distant memory.

Taught me a valuable lesson, not giving up is more important than pretty much
_anything_ else.

Found out 6mths ago I also have Crohns, just shrugged and carried on, life is
full of shit you can't control so focus on the things you can - mainly your
reaction to events.

~~~
Unknoob
> _life is full of shit you can 't control_

Pun intended?

~~~
noir_lord
Very much so.

------
gleb
I would be careful using BMD in this case. It's a funny metric, so-called
aereal density, grams per centimeter squared versus grams per centimeter cubed
you'd normally think of as density. Given perfectly normal bone structure the
BMD is gonna be smaller on a smaller person. It's not clear that the linked
study controls for this. Consider seeking out a facility with HRPQCT machine
to better evaluate bone microarchitecture.

Also, any particular reason they're not using a newer anabolic osteoporosis
drug on you? Meaning teriparatide or abaloparatide.

~~~
Abishek_Muthian
(OP)

You have raised some interesting questions, are you in medical field?

>grams per centimeter squared versus grams per centimeter cubed you'd normally
think of as density.

BMD results are measured as differences with normal healthy 30 year old
(T-score) in Standard deviations (SD).

>Given perfectly normal bone structure the BMD is gonna be smaller on a
smaller person

Density should be within acceptable range for a smaller person & a healthy
person of same age right?

> they're not using a newer anabolic osteoporosis drug on you? Meaning
> teriparatide or abaloparatide.

As soon as it was found that I was suffering from osteoporosis (from BMD), I
underwent zoldronic acid treatment along with calcium, vitamin-D supplements
with the orthopedic.

During diagnosis by spine surgeon, I was asked to take BMD again as the
results I had was equal to that of an 85 year old (in his words). New results
showed similar values & I was referred to an endocrinologist.

The endocrinologist did mention that there were powerful medications than
zoledronic, but since I had already administered it just a couple of weeks
earlier & that my spine surgery was to be held in next week; he asked me to
continue with the present treatment for osteoporosis.

After surgery, I did visit him again; he increased the dosage of calcium(500mg
- daily) & vitamin-D3 (Cholecalciferol 60,000 I.U - monthly) supplements for a
year and continue with zoledronic treatment for next 2 years.

~~~
gleb
Consider watching lectures by Dr. John Bilezikian on YouTube. He is one of the
top osteoporosis doctors in the world. Here's a link to the first one in the
latest series, but all his stuff on YouTube is great:

[https://www.youtube.com/watch?v=vnOQsYYalyQ](https://www.youtube.com/watch?v=vnOQsYYalyQ)

To your question, no, you would expect BMD to be a function of person size.
Because it's not actually density. The bigger the person bones are the larger
BMD you would see given the same volumetric density. DEXA measures how many
grams of calcium fall on a square centimeter, and bigger bones will result in
higher numbers.

For people close to mean in size the difference is academic, for somebody 3-4
standard deviations below the mean in size not so much. This is covered in Dr.
Bilezikian’s lectures. You can also Google [BMD areal volumetric].

In any case, this may not matter, BMD is predictive of fracture risk
regardless of size. There seems to be some but not much science there on
achondroplasia and osteoporosis. The few papers that pop up do suggest a link.

Since you are an outlier I'd consider doing this:

-learn more about osteoporosis from these lectures on YouTube

-find a facility with a HRPQCT which is a gold standard for diagnosing bone density issues

-the doctor who owns this machine is going to be a researcher who should find this case interesting, and will be able to reason from first principles not just follow guidelines, the guidelines that may not be applicable to somebody of an outlier size. Consult with his doctor

Feel free to friend me on LinkedIn if you want to talk more.

------
amrrs
This is really very nice of you to document your treatments and their
aftermath. I wish this page gets stored permanently in Internet archive for
parents whose kids suffer from this and for a better idea of how this could be
approached I studied in the same college you studied and for quite sometime I
was a silent admirer of your startup and hacks (starting from hackintosh). You
have been an inspiration for many of your college juniors (like me). I wish
wholeheartedly you get well soon and document that too!

~~~
Abishek_Muthian
(OP) Thank you!

------
FactolSarin
It seems his childhood doctor missed something. It's always worth getting
second opinions.

A friend of mine got in a fight at his 10 year high school reunion (when, not
ironically, confronting some bullies from back in the day). He went to the ER
with his eye bleeding and the doctor there told him he would have to remove
the eye. The surgeon wanted to do the operation right then.

My friend went home instead and saw another doctor the next day, who said "if
you do everything I tell you to do, we can save the eye."

Today he's 48 and still has 20/20 vision.

~~~
Abishek_Muthian
(OP)

>It seems his childhood doctor missed something. It's always worth getting
second opinions.

The doctor who performed Ilizarov surgeries, was the 4th or 5th Orthopedic
doctor my parents consulted for me. He trained directly under Ilizarov himself
& my treatment was conducted in 'the best' hospital in India which gets
patients around the world where he was the chief Orthopedic.

Considering the above, my parents were satisfied to hear his diagnosis that
I'm a normal kid & would grow taller than my dad (5.3") [Something which any
parent would like to hear].

Now, looking back; he might have lied; It wouldn't be a surprise as he's
definitely corrupt - He demanded ~ 1500 USD as un-accounted money the day
before surgery (at both times) while working in the most expensive hospital in
India at that time.

\---- I'm glad your friend didn't loose his eye, as you said second opinions
are recommended. I did consult 4 orthopedics (of which 3 Spine surgeons)
before my spine surgery.

------
wyldfire
> Achondroplasia is prone to loss in bone mineral density & spinal stenosis.

Discontinuing the supplements seems like it was an error. Were there symptoms
that led you to fear the impact on your kidneys specifically? Having the
luxury of hindsight it seems like it would have been much better to consult
with a physician about changes to dosage or other treatments that would still
preserve bone density. Also might be useful for physician to realize how
critical it is to impart details about the supplements as treatment and risks
of stopping to the patient.

~~~
jopsen
In hindsight a DNA test might have revealed achondroplasia, at-least Wikipedia
seems to suggest so..

I'll admit I'm tempted to strive away from DNA-tests because I'm not sure it
would be nice to know if I'm high risk for something bad.

But the this is a good example that we should do it anyways, because it might
reveal a condition that can be mitigated better if caught early.

~~~
Abishek_Muthian
(OP)

>In hindsight a DNA test might have revealed achondroplasia

It might have, but remember my diagnosis were conducted in 1994,2001 (though
best hospital in India of that time) to conclude I was a normal kid with some
vitamin deficiencies.

Even now, I doubt whether even now pregnancy scans test for achondroplasia. I
was informed recently that it was mentioned by a doctor in Singapore that,
achondroplasia tests should be requested during pregnancy tests.

I'm not sure whether it is part of pregnancy scans in Western countries & how
common is the DNA tests for achdonroplasia.

~~~
jopsen
My point was that when discussing DNA tests, people often argue that they
don't want to know if they are at a higher risk of cancer.

But this is a good example of something that they would want to know. Because
it can likely be mitigated.

That's a good point to keep in mind next time someone says they are unsure if
DNA testing is a good idea.

\--

To your point, I don't know if this disorder is something we screen for. But
the cost of full DNA sequencing is falling fast, and it's just a matter of
time before we start screen for genetic disorders. Thus, the future is bright.

------
codr4
Living is dangerous. I was told I was very, very lucky to be alive.

I had three vertibrae fused similarly ten or so years ago after a climbing
accident smashed the middle one into pieces. Many days it doesn't even cross
my mind unless I have more pain than usual for some reason; but now and then I
realize how surreal it is to have those pieces of metal inside my body, and
how much my life has changed as a result.

Definitely a near-life experience, wouldn't change it for anything in the
world; but you can't really go around and recommend people to fall of cliffs.

~~~
Abishek_Muthian
(OP)

I'm glad that the surgeries worked out for you. Is there any restriction of
movements from your surgery?

~~~
codr4
Not that I notice any more, took me about a year for everything to settle
though. What really helped me (and people will think I'm crazy, but here it
goes), both mentally, emotionally and physically; was Yoga. The real deal, not
the hipster kind.

Carrying heavy things and performing unpredictable, physical activities
changed. Recently tried surfing for example, but since I can't control the
motions enough to protect my spine and the price for a mistake is so high it
takes the fun out of it. And I stopped climbing for mostly the same reasons.

One day at a time, you'll be fine :)

------
djohnston
As someone who is going through some much milder spinal stenosis, I find it
extremely frustrating that fusion is still the most common surgical procedure
to address it. Aside from being as effective as conservative treatments over
10 years, it deforms the spine further and puts more strain on neighboring
disks. I don't know what the long term outcome is of ADL's, but it seems that
they at least preserve spinal anatomy.

~~~
arkades
Whether conservative treatment is equivalent to surgery varies with underlying
cause of stenosis and what disks are involved. The blanket statement that
conservative treatment is as effective as surgery over 10 years is highly
false.

------
cyberferret
My best thoughts and wishes to the OP for his future. Hope he manages to
successfully sell his startup and focus on his health.

My first business partner (who was my best friend at the time) experienced
something similar second hand. His wife (whom I was also close to) was told
she had a cyst in her spine which affected her walking, and it needed to be
operated on, with a 50/50 chance that she would become a paraplegic or by
totally cured.

Unfortunately, it was the wrong 50% and she ended up in a wheelchair, and
terribly sadly, their marriage ended after a couple of years because of all
the strains and challenges of her new situation.

My former business partner in my second business was an extremely fit and
athletic woman, who one day found that she struggled to walk up some stairs.
It turned out she had an extremely rare condition called Pompe disease, which
affects the muscles in your extremities at first, then slowly moves towards
your core muscles before finally leading to heart failure. She is playing the
waiting game now while fighting for the experimental stem cell treatment that
helps her to be officially approved by our government.

~~~
Abishek_Muthian
(OP)

It was heart breaking to hear about your friends & their family. I'm sure it
is very hard for friends like you to see your loved ones suffer & feel
helpless.

I would wish greater focus towards medical science, promote factual
information & medical ethics to hope for a future where chronic illness is not
common.

------
Abishek_Muthian
OP here. Apologise for the late comment, I posted & went to sleep (IST).

I will answer any questions.

------
mirimir
Damn. I can't quite imagine. But damn, you are brave.

The odontoid process on my C7 got snapped many years ago, perhaps in an auto
accident. And there's also some osteoarthritic cervical stenosis. But I have
no serious chronic symptoms. If I strain to move heavy stuff at full arm
extension overhead, with my head bent back maximally, my arms sometimes become
totally unresponsive. So I just don't do that. Maybe some cardiac and gut
issues too, but it's hard to tell.

But I can't help but wonder what might happen.

~~~
Abishek_Muthian
(OP)

>The odontoid process on my C7 got snapped

Do you mean tip of your C7? because AFAIK only tip of C2 is called odontoid.

>my arms sometimes become totally unresponsive

Did you check your spine again recently? I would suggest you to consult a
spine surgeon.

>But I can't help but wonder what might happen

Consulting the surgeon immediately would be helpful, like all medical
treatments; earlier is best.

~~~
mirimir
Ah, I didn't read carefully enough. I'm no anatomist, and my memory is iffy.

It's the _spinous_ process on C7. Apparently not so serious. It's called
"clay-shoveler's fracture", as I recall. The fracture healed, but the process
is bent over sideways.

But whatever, I clearly remember being unable to feel or move either arm, for
a minute or two. However, it's been almost ten years since that happened. I
did get a consult with a neurologist, and he basically said "don't do that".
I've also made more of an effort to stay in decent physical shape.

Thanks for your concern :)

Edit: coal -> clay

------
eXpl0it3r
Maybe it's too early or there are other restrictions, but I don't fully
understand how the only option to type sitting, is with the keyboard on his
lap and then having to deal with the fact that it's out of his sight. It was
probably just an example to demonstrate the limitation, but it seemed weird
that you can't have a setup that still allows you to just look at the keyboard
without turning your head.

~~~
Abishek_Muthian
(OP)

> but I don't fully understand how the only option to type sitting,

My accessibility issues was during my bed rest after spine surgery. I
mentioned in the article that, I'm typing now by keeping the keyboard on my
lap (as I'm unable to see the keyboard on the table anyways).

During bed rest, I tried different accessibility mods such as using lazy
glasses (which generated 90 deg vision of monitor), keeping bed table at 45
deg with laptop, hanging tablet before face with tablet/smartphone holder,
hanging smartphone before my face & using physical keyboard; none of them
worked. I will detail this experience in a separate article.

>but it seemed weird that you can't have a setup that still allows you to just
look at the keyboard without turning your head

Placing keyboard on the top of the table, where I could see creates strain on
my shoulders leading to pain lasting for a day for just 30 minutes of typing.

------
carlsborg
“I’m winding down operations at our startup & en-route to sell our products to
interested companies; to focus on physical & mental health.”

Admire the fighting spirit. But this is rough. If you are planning to do some
limited amount of remote work going forward this might be a good platform to
mention it.

~~~
Abishek_Muthian
(OP)

Thank you, your suggestion is much appreciated. Once I adapt to the
accessibility limitations and able to sit for longer duration; I'll definitely
look forward to remote work & support from HN community.

------
arkades
As I understand it you were given supplements to prevent loss of bone density,
you unilaterally discontinued them, and then suffered fractures due to low
bone density.

It seems like a relevant take-away should be “do not unilaterally change the
treatment plan without discussing with your chosen expert first.”

~~~
jopsen
Hindsight is easy.

I had to learn the hard way, that you should always follow up on test results.
Even if you feel better, and the doctor didn't call you..

Another lesson from this could be to take a DNA test. But face our own
mortality sucks :)

~~~
Abishek_Muthian
(OP)

I've mentioned about DNA test here [1].

[1]:
[https://news.ycombinator.com/item?id=17906532](https://news.ycombinator.com/item?id=17906532)

------
DoreenMichele
_Calcium, Vitamin-D3 supplements_

To properly absorb the calcium, you may also need magnesium and vitamin K.
Make sure iron and calcium are consumed separately.

Bone marrow is fatty. I find that consuming the right fats helps with my bone
health and keeps pain down.

Best.

~~~
Abishek_Muthian
(OP)

Thank you. I was informed that my potassium levels were low after the surgery
and was asked to consume tender coconut water & banana.

Are you getting your Mg & K from diet? Also tips on 'right fats' would be
helpful.

~~~
DoreenMichele
Potassium is not usually a big issue for me. I do get bananas when it's an
issue and I can't think of any other high potassium foods because it isn't
something I struggle with.

I usually get magnesium from nuts, like cashews, and dark chocolate. If you
supplement magnesium, look for magnesium glycinate as a highly bioavailable
form.

Fats:

I have a different genetic disorder from you. This may not apply to you. I
specifically misprocess fats. I have done some reading and tracked my diet and
found which fats work for me by trial and error.

Medium chain triglycerides are medically recommended for many conditions
because the body has an easier time processing them. Butter is a reasonable
source. Coconut oil and palm oil are high in MCT.

I avoid peanut oil and canola oil. I mostly avoid corn oil. They all aggravate
my condition.

I strongly favor butter. When I was sicker, I looked for organic butter and
sometimes clarified it myself to make ghee.

I also tolerate animal fats well. When my lungs aren't bothering me, I eat
bacon regularly. My genetic disorder impacts my lung health and bacon is high
in either nitrates or nitrites and it aggravates my lung issues. I cut back on
the bacon when my lungs are acting up.

Cheese is another source of healthy fats that I regularly consume. I also
tolerate sunflower oil well. I regularly consume nuts and seeds. They are a
good source of healthy fats, though I read labels because many contain oils I
avoid if they are roasted. In the US, peanut oil is frequently used to roast
nuts. I look for dry roasted if at all possible.

When I need cholesterol to support nerves healing, I eat bacon, eggs and
butter. You also need extra b vitamins when nerves are healing.

When I was much, much sicker, I sometimes had agonizing pain in my teeth and
jaw. Butter sandwiches or butter added to a potato dish fixed it. I used to
sit and eat up to 3/4 of a stick of butter on a roll or two to stop the pain.
I'm no longer terribly deficient. I couldn't possibly eat that much butter in
one sitting now. But that used to be the only thing that stopped my bone pain.

Be advised that all coconut products, whether coconut oil or coconut water,
promote diarrhea. Start with small amounts at a time or you will spend all
your time in the bathroom.

~~~
Abishek_Muthian
(OP)

Very detailed, much appreciated.

For the past 3 years, I had been consuming balanced diet with oats or similar
cereals for breakfast, wheat & occasional rice for lunch & only fruits with
nuts for dinner. 3-4 cups of milk with tea/coffee every day. I assume my bones
wasn't able to absorb necessary calcium.

~~~
DoreenMichele
I don't know anything about your genetic disorder. My genetic disorder
promotes osteoporosis.

My personal opinion: The mechanism is two fold. My condition makes people too
acid and the body strips calcium from the bones to buffer the blood against
that. Our cells are also known to hoard calcium. I believe this is also a
buffering mechanism.

Some people with my condition try to avoid calcium because high levels of
calcium in the cell is associated with cell death. So they see the calcium as
a problem. I see it as a symptom of serious problems. I see it as the body
desperately trying to protect itself against other chemical derangement.

My condition also is associated with an excess of glutathione in the cells. I
think this is also another buffering mechanism.

Glutathione smells very sour, like skunk. As I slowly resolved the chemical
derangement of my body, I sometimes went through periods where my poop smelled
like skunk. I think I was dumping the glutathione that was no longer needed as
a buffer.

Do you know the specific mechanism behind your genetic disorder? The specific
mechanism for mine is a defect in a cell channel. This cell channel is a
gating mechanism for certain molecules. When it is defective, there is a
bottleneck in the system.

With doing research, I have been able to work around that and get things
working closer to normal.

If you know the mechanism behind your disorder, it may be possible to do
something similar and make dietary changes and lifestyle changes that help
compensate for whatever your body does different from the norm.

Which is a very long way of agreeing that your body may not be absorbing or
using calcium normally and you may need to alter your diet permanently to
account for your genetic disorder and whatever it does to how your body
handles calcium. And that may not be straight forward and obvious. You would
need to understand the process or processes causing the calcium deficiency.

It may not be as simple as the bones not absorbing calcium. It isn't with my
condition.

