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[toyz]

1 CT = 300 x rays. is so much of radiation really necessary??

how come other doctors do not requires this CT scanning?

[Vogel]

1 CT = 300 x rays. is so much of radiation really necessary??

how come other doctors do not requires this CT scanning?

Because he has to order the nail months before your surgery. For other doctors (in the US) it’s widely available and easy to get so they figure out the corrext nail size for you during the operation.

[toyz]

Because he has to order the nail months before your surgery. For other doctors (in the US) it’s widely available and easy to get so they figure out the corrext nail size for you during the operation.

oohh that makes sense. he said we shoudl order 6 week in advance

But 1 CT = 300 xray. Is it really safe? that too it will be on private part

[Vogel]

oohh that makes sense. he said we shoudl order 6 week in advance

But 1 CT = 300 xray. Is it really safe? that too it will be on private part

Tbh I’m not sure about the risks of CT.

[Growing Experience]

Hi Growing

were you forced to get CT scan done before surgery?? and is it really necessary?

the doctor forces patients to get consent from a relative.. is there a way around it even you are quite old?? how did you manage this? should your relative sign a letter or something like that?

and you mentioned you got blood transfusion. why was that necessary?? did you donated your own blood before surgery or did you take it from the blood bank?

Hi toyz,

I see that your CT Scan related queries are answered by Vogel.

Dr. insists on having a family member present during the initial phase of your journey. Its practically impossible to go through CLL, specially PRECISE without any support. I guess you can get it done by yourself if you're coming from abroad and have a hired 24/7 caretaker.

Blood transfusion was necessary because I had some blood loss after the surgery. I bought it from the bank and the hospital arranged for it.

[Growing Experience]

DAY 83-105


CONSOLIDATION
I am at 20+ days into consolidation. I must say that leg muscles feel much better! 
Doc asked to get Xray done 3 weeks into consolidation so I got it done a few days back.

XRAY - https://imgur.com/a/4qj2CX6

Callus formation has started but its still very light! I'm a little sad because doctors have asked me to wait another 3 weeks to start any kind of weight bearing on the walker. They will check my next Xray and guide on weight bearing.


PAIN/ TIGHTNESS
- I am pain free and medication free. Only taking calcium and D3.
- Muscle tightness is improving day by day. its a slow recovery like getting better 1% everyday
- Knees are also improving slowly. I think they'll be completely straight by the time I start weight bearing.

MOBILITY AND EXERCISES
Continuing with regular physiotherapy. My PT comes once a day for 1 hour. I have increased reps for few of the exercises. Also, she helps in doing stretching which is really important if you want to bounce back fast!
My mobility and ROM has improved a lot and I've started getting my muscle mass back on thighs and glutes.


WORK AND SOCIAL LIFE
Working full time without much problem. Instead of sitting on the table (to avoid knee bending time), I'm lying in bed keeping legs straight and using portable table to keep laptop.
I must also say that you can only work offline OR go to school/ college no less than 6-7 months post-op, specially if you're doing PRECISE.

Now that I'm 4 months into isolation from the outside world, I've started to feel my social life getting affected. Im missing going out, meeting friends, adventurous trekking trips that I used to go on every year. I thought I was prepared for this but my mind seems to be perceiving time very slowly. 

TIP: GETTING COSMETIC LENGTHENING DONE WITH PRECISE NAILS? START THINKING OF FINDING WORK THAT YOU CAN MANAGE REMOTELY. HAVING A HOBBY WILL ALSO HELP PASS TIME AND STAY SANE. THERE'S ONLY SO MUCH TV ONE CAN WATCH 

[Vogel]

Great feedback and advice thank you.



The nails have some bending to them is that normal? Also, the furthest distal nail on your left femur seems a little bent. Anything to be worried about?

[toyz]

Blood transfusion was necessary because I had some blood loss after the surgery. I bought it from the bank and the hospital arranged for it.

so its good idea to donate own blood b4 surgery itself? didnt the doctor recommend this to you?

[href]

How much did it cost?

[toyz]

Bro did the blood bank gave you NAT tested blood ?  bcoz in most banks in India there is no NAT testing (only ELISA is there)

[Growing Experience]

Great feedback and advice thank you.



The nails have some bending to them is that normal? Also, the furthest distal nail on your left femur seems a little bent. Anything to be worried about?

You noticed it! Even I was thinking there is some bending in the nail. I asked the docs but they were not worried. However, advised to avoid any weight bearing for now.

[Growing Experience]

How much did it cost?

I have already answered this in my diary. 

TOTAL COST OF PRECISE 2.2 (Bilateral) IN INDIA TODAY WILL BE AROUND 50K USD (post op hotel stay & nail removal cost not included)

But these prices are likely to change soon because of increase in PRECISE import prices.

[Growing Experience]

Bro did the blood bank gave you NAT tested blood ?  bcoz in most banks in India there is no NAT testing (only ELISA is there)

Bro, honestly, I have no clue about this. This is something for which I had to trust the Doctor and Mangal Anand's team.

If blood transfusion is done, docs will monitor symptoms for irritation, itching etc. for next 2 days to check if there is any negative reaction.

[toyz]

Bro, honestly, I have no clue about this. This is something for which I had to trust the Doctor and Mangal Anand's team.

If blood transfusion is done, docs will monitor symptoms for irritation, itching etc. for next 2 days to check if there is any negative reaction.

sorry bro I did not meant to worry you

I am just paranoid about blood. more than reaction which can happens due to wrong group getting used (which rarely happens) I am worried about catching infection like hepatatis etc if proper NAT blood test was not done. This is nobodys fault, just lack of tech used in blood banks in India without enough money

good luck on recovery bro

[toyz]

Bro, honestly, I have no clue about this. This is something for which I had to trust the Doctor and Mangal Anand's team.

If blood transfusion is done, docs will monitor symptoms for irritation, itching etc. for next 2 days to check if there is any negative reaction.

Hey bro how are you doing?
 
Did you got any blood test done after discharge as per any protocol?

[Growing Experience]

DAY 106-137 (exactly 4.5 months post-op)


CONSOLIDATION
I am at 50+ days into consolidation. Started weight bearing and walking with 30% body weight on both legs. Rest of the weight I'm putting on walker.

Callus is growing! 

Check out Latest XRAY - https://imgur.com/a/23qItdK


PAIN/ TIGHTNESS
- I am having pains again but I think its mostly due to winter season. My left knee pains while exercising and walking. Also, there's weird tightness (slight painful) in the right side near flexor and abductor.

- Knees are completely straight now. (so, it took about 1.5 months to straighten them ) GIVE YOUR 100% DURING LENGTHENING PHASE TO AVOID BENT KNEES!

MOBILITY AND EXERCISES
- PT once a day - takes about 1 hour to do all exercises. Started using ankle weights for exercises and also increased reps.
- I am calling therapist only 2-3 times a week now as I can comfortably do all exercises
- Stretching everyday and flexibility has improved a lot! can sit cross-legged on chair and in bed (but for small intervals only, then it starts to pain a little, specially on the right side where I am having tightness)

- Trying to walk as much as possible. But cant do it for more than 1-2 mins at a stretch. So, walking in sets of 5, thrice a day.


WORK AND SOCIAL LIFE
Working is no problem at all. Sitting for few hours is also no issue now.
I have started meeting friends and family, mostly at home.
I do go out on wheelchair sometimes and on car rides

I CAN FEEL THE DIFFERENCE IN HEIGHT  SURPRISINGLY, YOU GET USED TO IT VERY VERY SOON AND MAY EVEN FORGET YOUR PREVIOUS EYE LEVEL!

TIP: CONSOLIDATION PHASE CHECKLIST -

- ADD D3 ALONG WITH CALCIUM SUPPLEMENTS
- IF AVAILABLE, HAVE PAYA SOUP DAILY
- START STRETCHING AND PUSH YOURSELF WHILE DOING IT - HOLD FOR MORE TIME, DO MORE REPS
- CAN ADD STATIC CYCLING IN YOUR DAILY ROUTINE (KEEP INCREASING ITS RESISTANCE)
- ADD ANKLE WEIGHTS TO YOUR PT ROUTINE. MAKE LEGS STRONGER BEFORE YOU START WALKING

[tallmen]

DAY 106-137 (exactly 4.5 months post-op)


CONSOLIDATION
I am at 50+ days into consolidation. Started weight bearing and walking with 30% body weight on both legs. Rest of the weight I'm putting on walker.

Callus is growing! 

Check out Latest XRAY - https://imgur.com/a/23qItdK


PAIN/ TIGHTNESS
- I am having pains again but I think its mostly due to winter season. My left knee pains while exercising and walking. Also, there's weird tightness (slight painful) in the right side near flexor and abductor.

- Knees are completely straight now. (so, it took about 1.5 months to straighten them ) GIVE YOUR 100% DURING LENGTHENING PHASE TO AVOID BENT KNEES!

MOBILITY AND EXERCISES
- PT once a day - takes about 1 hour to do all exercises. Started using ankle weights for exercises and also increased reps.
- I am calling therapist only 2-3 times a week now as I can comfortably do all exercises
- Stretching everyday and flexibility has improved a lot! can sit cross-legged on chair and in bed (but for small intervals only, then it starts to pain a little, specially on the right side where I am having tightness)

- Trying to walk as much as possible. But cant do it for more than 1-2 mins at a stretch. So, walking in sets of 5, thrice a day.


WORK AND SOCIAL LIFE
Working is no problem at all. Sitting for few hours is also no issue now.
I have started meeting friends and family, mostly at home.
I do go out on wheelchair sometimes and on car rides

I CAN FEEL THE DIFFERENCE IN HEIGHT  SURPRISINGLY, YOU GET USED TO IT VERY VERY SOON AND MAY EVEN FORGET YOUR PREVIOUS EYE LEVEL!

TIP: CONSOLIDATION PHASE CHECKLIST -

- ADD D3 ALONG WITH CALCIUM SUPPLEMENTS
- IF AVAILABLE, HAVE PAYA SOUP DAILY
- START STRETCHING AND PUSH YOURSELF WHILE DOING IT - HOLD FOR MORE TIME, DO MORE REPS
- CAN ADD STATIC CYCLING IN YOUR DAILY ROUTINE (KEEP INCREASING ITS RESISTANCE)
- ADD ANKLE WEIGHTS TO YOUR PT ROUTINE. MAKE LEGS STRONGER BEFORE YOU START WALKING

1 more month and you'll be fine. Good to see your progress.

[Growing Experience]

1 more month and you'll be fine. Good to see your progress.

Thanks mate!   I am also very happy to see your speedy recovery.

Will always appreciate how candid you were in sharing your experience during different phases of CLL. It helped me be mentally prepared for my own journey.

[toyz]

hey bro congrats for the progress!

just one ques: did they give you option to bring family member to donate blood for transfusion? did you not have any family member for this purpose?

[toyz]

hey bro, if you dont mind saying this, pls get hepititis B test done for safety reasons. Amitabh bachan got blood transfusion in 1980 and he just forgot about it. But 20 years later he had some liver damage due to hepatiatis b. Bcoz you dont even know if you have got it bcoz there are no symptoms. even tho blood quality is very much better now, Testing can be very useful and its quite easy too.
I hope I have not annoyed you bro about this topic. I wish u very quick recovery and full atheletic activity fast.

[Growing Experience]

hey bro, if you dont mind saying this, pls get hepititis B test done for safety reasons. Amitabh bachan got blood transfusion in 1980 and he just forgot about it. But 20 years later he had some liver damage due to hepatiatis b. Bcoz you dont even know if you have got it bcoz there are no symptoms. even tho blood quality is very much better now, Testing can be very useful and its quite easy too.
I hope I have not annoyed you bro about this topic. I wish u very quick recovery and full atheletic activity fast.

Thanks for your concern!

[Growing Experience]

DAY 220ish (exactly 7.5 months post-op)  I know I am posting after sooo long!


CONSOLIDATION
5 months into consolidation. At 100% weight bearing but I am still using crutches for balance.

Callus growth is okay but idk why its not bridging on the outer side of right leg
Also, started taking PTH a month back and will continue for 2 more months.

Latest XRAY - https://imgur.com/a/gMjCflu


PAIN/ TIGHTNESS
- Walking was painful when I first started using crutches. Now its okay but after entire day of walking and exercises, it feels like I have climbed a mountain. So, pre-op strength and endurance still seems far.

- Knees are killing me right now as I just started practicing getting up from bed and climbing stairs (both with little assistance from crutches)

MOBILITY AND EXERCISES
- Walking 4-5000 steps daily (assisted)
- New Daily Exercise - Going up and down the stairs, getting up and sitting back on chair [is it called seated squats?]
- Cycling for 20 mins on alternate days
- Flexibility and ROM almost back to normal. I can sit cross legged for long time, pick anything from the floor


WORK AND SOCIAL LIFE
I can feel my work and social life being affected as its becoming really difficult to avoid people now. I hoped to be back to 100% normal walking at the 8th month mark. But my bone has different plans for me.

I've started driving though - its pretty much the same, no difficulties there.

[oeioei2]

Hello I am happy it went well without any big complications. Congratulations.
How come you cant walk unassisted after 8 months? Is that normal or did something happen? Because everywhere I read they say you can expect to walk unassisted like 4-5 months after consolidation.

[tallmen]

Hello I am happy it went well without any big complications. Congratulations.
How come you cant walk unassisted after 8 months? Is that normal or did something happen? Because everywhere I read they say you can expect to walk unassisted like 4-5 months after consolidation.

I think it's 8 months after the surgery, not consolidation.

[Growing Experience]

Hello I am happy it went well without any big complications. Congratulations.
How come you cant walk unassisted after 8 months? Is that normal or did something happen? Because everywhere I read they say you can expect to walk unassisted like 4-5 months after consolidation.

As overandover mentioned, I am 8 months post-op and 5 months into consolidation. And yes, thats what the average time of unassisted walking is. But, my right femur bone is not there yet.

I am hoping I'll be cleared for unassisted walking in next 30 days. The Parathyroid hormone (PTH) should also start kicking in now as I have been taking it for a month.

[toyz]

bro ur lucky to be last patient who got precise nail in India before it was stopped

ur full recovery will come soon and I wish u the best bro

[Growing Experience]

bro ur lucky to be last patient who got precise nail in India before it was stopped

ur full recovery will come soon and I wish u the best bro

There was 1 patient with me 2 more patients after me who did full 8cm but they are not active on this forum.

Thanks for your good wishes bro! 

[Growing Experience]

I will soon share a detailed update of the last 30-40 days.

Just wanted to write that lately I've not been feeling so good and having bad muscle pain in my right quads.
CLL is harder than it seems to be during pre-op research.

And, if you think 3 months of lengthening is the tough part, you'll be disappointed to know that getting back to normal walking is crazzzyyy fu********g son of a bi**h <add 10 abuses in your own language> TOUGH! 

[toyz]

I hope ur doing OK bro

[sphenopetroclival]

And, if you think 3 months of lengthening is the tough part, you'll be disappointed to know that getting back to normal walking is crazzzyyy fu********g son of a bi**h <add 10 abuses in your own language> TOUGH! 

Well, if you reside at a country where AAS are OTC I can’t imagine it would be a serious issue to ambulate assuming you’re training regularly and seeing a physiotherapist.

[Growing Experience]

DAY 300ish (10 months post-op) 


CONSOLIDATION

Finally, I have achieved 3 side consolidation in both bones. The parathyroid harmone + lots of walking has helped!

Latest XRAY - https://imgur.com/a/U00Ud4J


PAIN/ TIGHTNESS
- I was having really bad pain in my right quads due to over exercising. It took 2 months to get rid of the pain, felt like I started from the beginning (like I just had the surgery) as I couldn't raise my leg during PT and day by day built the strength again.
- POWERING THROUGH is the name of the game! I shouldn't have rested the leg for 7-8 days, it made it worse.
- I am back to feeling normal in both the legs, have decent flexibility and mobility during the day. 
- Little Pain and stiffness comes back as the day ends because I walk 5000-7000 steps, do PT, stairs etc and get tired by evening.

MOBILITY AND EXERCISES
- Walking 5-7000 steps daily, unassisted now
- Having very less sway & only on one side. In public, most people may not even notice BUT it doesn't remain the same all the time. For eg: - If I just walked 2000 steps and then sat down for half an hour in a coffee shop, when I stand and walk again, the sway gets worse for like next 50 steps. Completely getting rid of the SWAY is tricky!
- I am doing all these exercises to help improve my walk. It has been really helpful - https://www.youtube.com/watch?v=0yxkUTP9WuU&list=LL&index=2



WORK AND SOCIAL LIFE
The big question - Has my work and social life returned back to normal at 10 months post op after doing conservative lengthening (<7cm)  ??

Ill update in my next post