8 ms·

I was told I would become quadriplegic

noir_lord 8y ago
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 8y ago
  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 8y ago
    > 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.
    - 52-6F-62 8y ago
      > Taught me a valuable lesson, not giving up is more important than pretty much anything else. That's a lesson often hard-learned. Sounds like you've gained a lot of wisdom through those experiences. I wouldn't wish those conditions on anyone, but it sounds like you've come out better anyway. All the best.
    - Unknoob 8y ago
      > life is full of shit you can't control Pun intended?
      - noir_lord 8y ago
        Very much so.
    - open-source-ux 8y ago
      You might enjoy this story: The stomach-churning one-night stand: https://www.bbc.co.uk/news/disability-45045223 https://www.bbc.co.uk/news/disability-45045223
- Abishek_Muthian 8y ago
  (OP) I feels good to know that your surgeries were helpful & you are doing better. Information on the risk of infections on the permanent implants are very minimal albeit unclear. Recently on a Reddit thread this was widely discussed[1]; some say the risk is only for couple of months after surgery & others included papers to say the risk is permanent - I didn't include this in my content as I didn't feel confident to do so without proper research. [1]: https://www.reddit.com/r/todayilearned/comments/9b1fjb/til_titanium_is_used_in_medical_implants_because/ https://www.reddit.com/r/todayilearned/comments/9b1fjb/til_t...
amrrs 8y ago
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 8y ago
  (OP) Thank you!
escapologybb 8y ago
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! :-)
- isoprophlex 8y ago
  Keep on rockin' it my dude! Your obvious dedication to doing what you love in the face of adversity is an example to us all.
  - escapologybb 8y ago
    I will, I will keep trying to set a terrible example as often as I can. :-)
    - scoggs 8y ago
      Agreed. Your optimism is awesome and I love seeing people who, without seemingly any question about what they have to do / want to be, go after what they want regardless of anything else. The bigger the hurdle the greater it is to see great people achieve their goals.
- Kagerjay 8y ago
  Takes some extremely strong willed person to do what you enjoy to do despite everything else, hats off to you
  - escapologybb 8y ago
    Nah, it's just extreme boredom. :-)
- Aloha 8y ago
  I'd be curious to know more about how you got there, and what you do to adapt. It's actually interesting, I have a friend who was born without an arm just below the elbow, he cant tell me how he adapts, because he's never done it any other way.
wyldfire 8y ago
> 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 8y ago
  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 8y ago
    (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 8y ago
      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.
carlsborg 8y ago
“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 8y ago
  (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.
gleb 8y ago
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 8y ago
  (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 8y ago
    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.
djohnston 8y ago
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 8y ago
  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.
- Abishek_Muthian 8y ago
  (OP) I wonder whether spine fusion surgeries can be compared with conservative treatments (I presume which means less intrusive). I was asked to fill 5 consent forms acknowledging the risks of undergoing the surgery, 5th was supposedly a handwritten one explaining I understand that the surgery might result in my death. I asked a doc to write it himself & I signed it.
arkades 8y ago
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 8y ago
  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 8y ago
    (OP) I've mentioned about DNA test here [1]. [1]: https://news.ycombinator.com/item?id=17906532 https://news.ycombinator.com/item?id=17906532
- Abishek_Muthian 8y ago
  (OP) You are correct. I have mentioned what lead to that here[1]. [1]: https://news.ycombinator.com/item?id=17906463 https://news.ycombinator.com/item?id=17906463
FactolSarin 8y ago
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 8y ago
  (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.
eXpl0it3r 8y ago
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 8y ago
  (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.
cyberferret 8y ago
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 8y ago
  (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.
mirimir 8y ago
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 8y ago
  (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 8y ago
    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
Abishek_Muthian 8y ago
OP here. Apologise for the late comment, I posted & went to sleep (IST). I will answer any questions.
codr4 8y ago
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 8y ago
  (OP) I'm glad that the surgeries worked out for you. Is there any restriction of movements from your surgery?
  - codr4 8y ago
    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 :)
DoreenMichele 8y ago
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 8y ago
  (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 8y ago
    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.

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 8y ago
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 8y ago
  > 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.
  - 52-6F-62 8y ago
    > Taught me a valuable lesson, not giving up is more important than pretty much anything else. That's a lesson often hard-learned. Sounds like you've gained a lot of wisdom through those experiences. I wouldn't wish those conditions on anyone, but it sounds like you've come out better anyway. All the best.
  - Unknoob 8y ago
    > life is full of shit you can't control Pun intended?
    - noir_lord 8y ago
      Very much so.
  - open-source-ux 8y ago
    You might enjoy this story: The stomach-churning one-night stand: https://www.bbc.co.uk/news/disability-45045223 https://www.bbc.co.uk/news/disability-45045223
Abishek_Muthian 8y ago
(OP) I feels good to know that your surgeries were helpful & you are doing better. Information on the risk of infections on the permanent implants are very minimal albeit unclear. Recently on a Reddit thread this was widely discussed[1]; some say the risk is only for couple of months after surgery & others included papers to say the risk is permanent - I didn't include this in my content as I didn't feel confident to do so without proper research. [1]: https://www.reddit.com/r/todayilearned/comments/9b1fjb/til_titanium_is_used_in_medical_implants_because/ https://www.reddit.com/r/todayilearned/comments/9b1fjb/til_t...

amrrs 8y ago

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 8y ago
(OP) Thank you!

escapologybb 8y ago

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! :-)

isoprophlex 8y ago
Keep on rockin' it my dude! Your obvious dedication to doing what you love in the face of adversity is an example to us all.
- escapologybb 8y ago
  I will, I will keep trying to set a terrible example as often as I can. :-)
  - scoggs 8y ago
    Agreed. Your optimism is awesome and I love seeing people who, without seemingly any question about what they have to do / want to be, go after what they want regardless of anything else. The bigger the hurdle the greater it is to see great people achieve their goals.
Kagerjay 8y ago
Takes some extremely strong willed person to do what you enjoy to do despite everything else, hats off to you
- escapologybb 8y ago
  Nah, it's just extreme boredom. :-)
Aloha 8y ago
I'd be curious to know more about how you got there, and what you do to adapt. It's actually interesting, I have a friend who was born without an arm just below the elbow, he cant tell me how he adapts, because he's never done it any other way.

wyldfire 8y ago

> 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 8y ago
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 8y ago
  (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 8y ago
    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.

carlsborg 8y ago

“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 8y ago
(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.

gleb 8y ago

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 8y ago
(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 8y ago
  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.

djohnston 8y ago

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 8y ago
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.
Abishek_Muthian 8y ago
(OP) I wonder whether spine fusion surgeries can be compared with conservative treatments (I presume which means less intrusive). I was asked to fill 5 consent forms acknowledging the risks of undergoing the surgery, 5th was supposedly a handwritten one explaining I understand that the surgery might result in my death. I asked a doc to write it himself & I signed it.

arkades 8y ago

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 8y ago
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 8y ago
  (OP) I've mentioned about DNA test here [1]. [1]: https://news.ycombinator.com/item?id=17906532 https://news.ycombinator.com/item?id=17906532
Abishek_Muthian 8y ago
(OP) You are correct. I have mentioned what lead to that here[1]. [1]: https://news.ycombinator.com/item?id=17906463 https://news.ycombinator.com/item?id=17906463

FactolSarin 8y ago

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 8y ago
(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.

eXpl0it3r 8y ago

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 8y ago
(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.

cyberferret 8y ago

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 8y ago
(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.

mirimir 8y ago

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 8y ago
(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 8y ago
  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

Abishek_Muthian 8y ago

OP here. Apologise for the late comment, I posted & went to sleep (IST). I will answer any questions.

codr4 8y ago

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 8y ago
(OP) I'm glad that the surgeries worked out for you. Is there any restriction of movements from your surgery?
- codr4 8y ago
  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 :)

DoreenMichele 8y ago

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 8y ago
(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 8y ago
  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.