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[phd]

Hey TakingAction,

Amazing perspective. I am curious approximately how old you are if you're okay with sharing that. You are with one of the best and have great chances of a full recovery.

If you get a chance, can you ask Paley or Robbins about the probability of developing a pulmonary embolism? One in how many people get it and how many of those end up with severe long term problems or death? I am trying to consolidate these numbers for everyone to read in a different thread. I haven't had a chance to talk to Paley so just wanted to request you.

Thank you

[Masteryourlife]

Day 6: Today, I did a reflection on my surgery experience. Before the surgery, I had lots of ideas about what's life like after the surgery by reading journals from lots of other people on the forum. I thought I'd go through the similar experiences. However, it turned out that my experiences are so different from others.

Before the surgery, I thoughts:
1. I'll have a   ton of pain like level 9 or 10 after surgery.
2. My brain won't work on any work or planning on my laptops.
3. I'll probably need to take oxy and possibly develop the risk of addiction.

After the surgery, what happened so far is that:

1. My pain level is 2-5, not like some other posts stating VERY PAINFUL on the forum.
2. My brain could actually work on pretty complex cognitive tasks just a few days if not a few hours after the surgery (especially with the help of just one cup of coffee)
3. I didn't even take oxy even after I moved to the hotel for more than a day and night.

Those experiences above are good surprises. So far, I really just had one small negative surprise, which is the passing out twice on the days right after surgery because of the surgery damage to my body. This negative surprise is very short-term and also positive too because I learned the value of life. Before I passed out, I took life for granted because I had never really passed out in a hospital with a nurse asking me "are you with me?" before. It felt like I was dead for a few seconds in a movie or something lol The passing-out experience taught me how amazing life is. After I recovered, the passing out reminded me that life is limited so we must do what matters to us. What truly matters to me is to find a wife to build a future big family. I also realized that all the seemingly huge discomfort/stress from my job is as tiny as a little star in the universe after you passed out and survived again.

Hey TA , Glad hearing you are doing good .
Are other CLL around you (if you had a chance to talk with them) having/had same experience as you pain wise ?
The pain post-OP is something  so debated and having a more linear updated review by latest CLL diares would be amazing .

[TakingAction]

Hey TakingAction,

Amazing perspective. I am curious approximately how old you are if you're okay with sharing that. You are with one of the best and have great chances of a full recovery.

If you get a chance, can you ask Paley or Robbins about the probability of developing a pulmonary embolism? One in how many people get it and how many of those end up with severe long term problems or death? I am trying to consolidate these numbers for everyone to read in a different thread. I haven't had a chance to talk to Paley so just wanted to request you.

Thank you

In my early 30s.

So the probability of PE is 0.00% stated on the Paley guidebook which you can easily get from them. However, one in more than one hundred people get Deep Vein Thrombosis (DVT) after Paley did the surgery (before COVID). Paley didn't release data for DVT during COVID but it says that it's higher in the following statement.

"DVT can occur after any orthopedic surgery or after
any fracture. Fortunately, we have a very low rate of
this complication (1%). For unexplained reasons we
found that the risk of DVT rose in 2020 compared
to prior to 2020. The only difference from prior
years was COVID19. While all the patients tested
negative before surgery to COVID19, we do know
that COVID19 does increase the risk of coagulation
related problems . Prevention is key. We use Xarelto
as an outpatient until the end of the consolidation
phase when the patient stops using crutches and
resumes full weight bearing. While we have seen
very few cases of DVT, none resulted in pulmonary
embolism (PE). PE occurs if the clot dislodges and
wanders to the lungs. It can cause shortness of
breath, chest pain, and even death. This is why
we are careful to protect against this. Taking oral
contraceptives and smoking increases the risk of
DVT." (Page 25, Paley STATURE LENGTHENING GUIDE BOOK)

[TakingAction]

"Are other CLL around you (if you had a chance to talk with them) having/had same experience as you pain wise ?"

Yes, I met one man who is great pain of 6-9 level, and he took oxy. But he didn't pass out like I did twice after surgery. So everyone has good luck and bad luck. Personally, I like the passing out experience more than the pain or oxy risk.

[Masteryourlife]

"Are other CLL around you (if you had a chance to talk with them) having/had same experience as you pain wise ?"

Yes, I met one man who is great pain of 6-9 level, and he took oxy. But he didn't pass out like I did twice after surgery. So everyone has good luck and bad luck. Personally, I like the passing out experience more than the pain or oxy risk.

Seems for real based on luck...we will never know till we go trough ig , glad you had a good experience

[TakingAction]

Yeah, luck is probably 20%. My passing out experiences are not necessarily good because some people including me didn’t want that near-death experience at least during those breathless moments.

[Masteryourlife]

Yeah, luck is probably 20%. My passing out experiences are not necessarily good because some people including me didn’t want that near-death experience at least during those breathless moments.

Ye ..that might have been tough..

[phd]

In my early 30s.

So the probability of PE is 0.00% stated on the Paley guidebook which you can easily get from them. However, one in more than one hundred people get Deep Vein Thrombosis (DVT) after Paley did the surgery (before COVID). Paley didn't release data for DVT during COVID but it says that it's higher in the following statement.

"DVT can occur after any orthopedic surgery or after
any fracture. Fortunately, we have a very low rate of
this complication (1%). For unexplained reasons we
found that the risk of DVT rose in 2020 compared
to prior to 2020. The only difference from prior
years was COVID19. While all the patients tested
negative before surgery to COVID19, we do know
that COVID19 does increase the risk of coagulation
related problems . Prevention is key. We use Xarelto
as an outpatient until the end of the consolidation
phase when the patient stops using crutches and
resumes full weight bearing. While we have seen
very few cases of DVT, none resulted in pulmonary
embolism (PE). PE occurs if the clot dislodges and
wanders to the lungs. It can cause shortness of
breath, chest pain, and even death. This is why
we are careful to protect against this. Taking oral
contraceptives and smoking increases the risk of
DVT." (Page 25, Paley STATURE LENGTHENING GUIDE BOOK)

Thank you for the reply. Is this guidebook given only to patients? Is it something that is not allowed to be distributed to outsiders?

[TakingAction]

Everyone can get it. Just email the Paley Institute, bro.

[TakingAction]

Day 8: Pain level increase in the nighttime. However, everything else is getting better. As of 7:08pm of today, I went to PT, lengthened 0.75 mm for the first time, and even managed to take a real shower by myself. Now, I'm officially independent of a caregiver because I was able to go to the toilet and take shower all by myself. (All other real needs can be satisfied by Uber Eat and Target grocery delivery). This is such a wonderful blessing. All I need to focus on now is to minimize the pain level during night sleep so I can have a good body for PT and a good brain for some cognitive tasks without taking painkillers that have bad side effects/risks. I might consider taking melatonin if it's not too risky for my morning cognitive function (I scheduled all my PT in the afternoons so I can get some laptop work done in the morning when my brain functions the best).

[SuchLL]

It’s nice to see you are already independent! I probably will never meet you because all my PT sessions are in the morning lol

[TakingAction]

It’s nice to see you are already independent! I probably will never meet you because all my PT sessions are in the morning lol

Why do you schedule all PT in the morning? Do you have to work in the afternoon or what?

[SuchLL]

Why do you schedule all PT in the morning? Do you have to work in the afternoon or what?

I’m taking 3 month off to be as relaxed as possible. I feel going to PT is like a daily mission… I’d like to complete it in the morning so I can be free the rest of the day.

[TakingAction]

Day 9: Pain~~~but still not enough for me to take the risk of extra tylenol (hopefully I only need 2 Tylenol during the night). Certainly won't take oxy for now (hopefully never). But yeah, it's painful...Good thing is that I managed to take shower again today by myself. So yesterday's first shower is not just a dream, but a real thing I can probably do every day unless something terrible happens to disable my shower ability.

Other things I feel grateful about today:
1. Grew 1.75mm so far
2. Made some new friends who have done CLL
3. Got some cocoa butter formula for bruise dry skin. Hopefully, I won't wake up tonight because of the dry skin of the bruise.

[phd]

Everyone can get it. Just email the Paley Institute, bro.

I managed to get it, but it doesn't have that latest update on covid. Maybe I got an old one.

[TakingAction]

Day 13 Everything seems normal. Just lengthen and stretch every day. Gained 6.5mm so far. The two biggest concerns, for now, seem to be nail bending and embolism. 

[AllinStryde]

Just a heads-up...there's not martyrdom in not taking painkillers and suffering.  Having 2 broken femurs is EXACTLY what pain meds are for.  It's not a contest to see "who takes them the least."  Don't put yourself through unnecessary pain.  Best of luck and keep on truckin'.

[TakingAction]

Day 21: Today is the 3-week mark since surgery. Things are going well. Still painful but thankfully things are getting easier overall. Had my first night without Tylenol last night, and the sleep was a good-7-hour one. Hopefully, I get to have another 7-hour sleep without any medication tonight. By the way, I still have a full bottle of oxy, and I haven't taken a single oxy pill yet since surgery day because I try to minimize the risk of oxy and save it only for an extremely-super-extraordinary painful situation. So lots of things to be thankful for.

[Masteryourlife]

Wow!

The fact that you avoided oxy this far its incredibile !
Thanks for updating us .
Best wishes for the future weeks

[Highest]

What's your starting height OP?

[TakingAction]

My starting height is about 5'7''
Day 24: Things are getting a little concerning due to the chest pain and the possibility of embolism, which is probably the only lethal risk of the surgery. My chest pain started around last Tuesday around level 3 with occasional shortness of breath. This week, I don't have any shortness of breath, and the chest pain level has decreased to level 1 (if I'm taking a deep breath). The fact that I can still feel a little chest pain when I'm taking a deep breath is concerning because that's a classic symptom of embolism.

I did an ultrasound test today on my legs, which don't have any blood clots because I've been taking 10mg of xarelto every day since surgery. Hopefully, I won't feel any chest pain even if I'm taking a very deep breath.

[chicitita]

How are you today? Hope you are feeling better. Did the chest pain go over? Did the clinic react quickly when you informed them about this?

Sending you all my good thoughts 😊

[TakingAction]

Probably feeling better today. The clinic reacted well and quickly.

[TakingAction]

Day 32: I was told today by a friend who did arm lengthening surgery a month ago but had to do an emergency corrective surgery this week due to loosening of the pins, which is dangerous to nerve.....this event is concerning because I'm not familiar with this type of risk. Now I feel like I need to be extra careful to not make sudden leg movements not only to prevent nail bending but also pin loosening....

[height-dream]

Hope you are doing well!

Any updates?

[TakingAction]

Hope you are doing well!

Any updates?

Grew a little more than an inch so far but feeling painful everyday, especially when I’m sleeping…but we all know that pain is just part of the deal…

[height-dream]

Good to hear that you are growing!

Did the chest pain go away, did you get to figure out why you had it?

[TakingAction]

Good to hear that you are growing!

Did the chest pain go away, did you get to figure out why you had it?

I think the chest pain went away. It's probably a body reaction to stress. Lots of stress comes from the inability to work on cognitive tasks due to pain in the legs. This inability to work means the potential loss of big income, which causes stress. To reduce the stress, I realized that I need to lower my expectation and adjust my monthly goals for cognitive work that I probably won't be able to do more than 30 minutes of cognitive tasks per day. It's not ideal, but it's OK because life isn't always perfect.

[TakingAction]

have been feeling numbness on my right leg (between knee and foot) for a total period about 5 hours since today morning. So I slowed down the lengthening speed from 1 mm per day to 0.75 mm. Is there any other action I can take to prevent possible damage?

[SuchLL]

Numbness on lower legs is very common and not a big concern. You can ask PT to teach you to do some nerve glides to stretch irritated nerves, but it won’t be as helpful as slowing down lengthening. Once your lower legs start to feel numb, it’s possible that nerve pain will be coming next. Nerve pain is different from other types of pain, it’s usually unbearable without taking pain meds like gabapentin. I’ve seen several people who couldn’t stretch and became tight quickly because of nerve pain. If you’re concerned about taking gabapentin (once you start to take it, you have to be on it until finishing lengthening), slowing down would be the best option and should help.

[TakingAction]

Numbness on lower legs is very common and not a big concern. You can ask PT to teach you to do some nerve glides to stretch irritated nerves, but it won’t be as helpful as slowing down lengthening. Once your lower legs start to feel numb, it’s possible that nerve pain will be coming next. Nerve pain is different from other types of pain, it’s usually unbearable without taking pain meds like gabapentin. I’ve seen several people who couldn’t stretch and became tight quickly because of nerve pain. If you’re concerned about taking gabapentin (once you start to take it, you have to be on it until finishing lengthening), slowing down would be the best option and should help.

Great info! I appreciate it! You mentioned about gabapentin. Do you think that has more side effect than oxy? If not, how’s gabapentin compared to Tylenol?