Hi everyone,
I got the CLL on June, 2021 and am currently wrapping up the lengthening. Currently at 79.3mm and tomorrow I'll reach 80mm.
Today, I got the X-ray scan and wanted to share the X-ray result with you.
Dr.Debipashard told me that at 80mm, full extension, a precice nail is at its weakest point because the extension makes the nail hollow.
It seems that the left nail is bent more than the right nail. The angle is not too severe but it's about 2 degrees bent inward.
It could be bent temporarily because I was standing unassisted to take the X-ray and this can temporarily bend the nails since the titanium is malleable.
Even if it is bent, this 2 degree angle is well within the range of normal angles. Also, from the fact that many of us have sometimes have up to 1cm difference in leg length and doesn't notice the difference the entire life up until doctors tell them so, I think 2 degree would not make any difference in terms of recovery or motion.
Anyway, I hope everyone who's going through the CLL to stay healthy and safe.
If you have any questions, shoot
Done with Precice 2.2 Lengthening with Dr. Debipashard. AMA
Thanks for the invitation for questions. I guess I have a few so here goes:
1. How are you currently mobilizing? Walker? Crutches? Wheelchair?
2. Did you stay nearby for all the rehab? If not, how challenging was it to find a good PT somewhere else?
3. How long were you reliant on the wheelchair?
4. What was starting height? New height? When in June did you do the surgery?
5. Any complications along the way during lengthening? If so, any takeaways on how to avoid them?
6. Any idea on when you will be consolidated enough to weight bear without any aids such as as walker or crutches?
Thanks
Hey L8GrowthSpurt,
1. How are you currently mobilizing? Walker? Crutches? Wheelchair?
I've used a wheelchair for the first week. After the surgery, you can use walkers for a very short period of time, but walking more than maybe 50 feet is pretty difficult. When you use wheelchairs, buy a transfer board. It was really helpful while I was transferring to/from bed to the wheelchair, and from wheelchair to toilet. It's a necessity.
After a week, I used a four-wheel walker, which allows you to walk naturally unlike a walker. It was also easier for me to go long distance. However, adjusting to the walker is pretty difficult at first. You need pretty good upper body strength. I actually gained a lot of muscles on my upper body.
Crutches to me seem a bit dangerous. There's higher chance to fall than walkers since it only has only two points of contact unlike four points of contact for walkers. However, I will use crutches when I start consolidate.
2. Did you stay nearby for all the rehab? If not, how challenging was it to find a good PT somewhere else?
This was one of the important considerations before I took the surgery. I thought that going to and from P.T. would be very difficult so I tried to find a place nearby but hotels are just ridiculously expensive. I ended up renting a really upscale 1bed 1bath 750sq foot place with a nice pool and a gym about 15 min drive from the Dr.D's office and the PT works with Dr.D so he knows what CLLers need for PT. From the second week, I was actually able to drive easily so it was also a big financial relief since I don't have to use expensive uber rides. Also, the rent for 6 month was only $1590/month for a really upscale apartment with wheelchair accessibility + A/C + washer/drier unit. So if you want CLL, I would recommend to find a place first rather than booking a hotel.
Another thing is that, the doctor recommended me to get an aid nurse for at least the first week, but I didn't hire any since I found that I could do everything by myself. The only thing that is most difficult is going to the toilet, which a $20 wooden transfer board solved. Also, I bought a Roomba i4 so I didn't have to worry about cleaning the house at all. Also, you don't need to change your cloth too often and just pile the cloth for few weeks until you get better. I did change my bed sheet and wash clothes easily after a few weeks. You can survive some stinks/stains for few weeks. It's not life threatening.
3. How long were you reliant on the wheelchair?
One week, but at night/morning the pain was pretty bad for a month so I used wheelchairs in the morning and night.
4. What was starting height? New height? When in June did you do the surgery?
I started at 171.5cm, now it is 179.3cm. Late June
5. Any complications along the way during lengthening? If so, any takeaways on how to avoid them?
This is one of the most life threatening moment in the leg lengthening.
After the surgery, there is a high chance of mild to severe fat embolism. You will be in the hospital from Friday to Sunday and within that timeframe if there's any fat embolism, there will be signs. Your oxygen saturation level will be low because fat from the femur blocks the blood vessels in your lung. Also, for me, I had some complication on my retina since blood vessels in the eyes are very very fine and can be easily blocked by fat. Also, you will have fever. I had everything and it resolved naturally with time. However, on my eye, I see some tiny gray patches on my left vision probably due to fat blocking oxygen to some retina cells. Retina cells don't regenerate like your brain cells. I recommend not moving or sitting upright for first few days to prevent fat from traveling to upper body.
Even after I was discharged, I found that my blood oxygen level was low around 80%. (buy a bluetooth oximeter for $25). So I bought oxygen concentrator for $300 and it worked wonders. I was able to breath easily and reached 99% oxygen concentration while I sleep.
Everything is fine now except my vision, but I sometimes use the oxygen concentrator since I found I wake up very refreshed when I use it sometimes, although the rubber pipes are kind of annoying while I sleep.
6. Any idea on when you will be consolidated enough to weight bear without any aids such as as walker or crutches?
The doctor told me 6-8 weeks.
Dang. Fat embolism and its effect on vision. Hope that recovers over time!
first time i'm hearing about this risk of retinal damage from fat embolism. i have not heard of any doctor mention this. i always thought if you don't die from fat embolism, you're go to go.
how common is this? this alone is making me re-think this procedure.
Quote from: Mymove on September 29, 2021, 06:45:12 AMI recommend not moving or sitting upright for first few days to prevent fat from traveling to upper body.
but all doctors advise against this because movement is good to prevent blood clots and subsequent pulmonary embolism.
also were you discharged with 80% o2 concentration? 80% is too low and would make people feel very weak. people used to get admitted hospitals if their concentration fell below 90% with covid.
I didn't know about the vision complications either, but Dr.D told me that he had seen some patients with vision problems before when I mentioned my symptoms. Also, the blood vessels on your retina are very fine so it kind of makes sense that it could be blocked easily.
Also, this seems to be very rare. Dr.D had a handful of patients out of hundreds. Even if others had, I think it is very difficult to tell whether you have it unless you have those vision loss at the center of your vision. I could tell because I have gray patches at the center of my left vision which block me reading parts of characters (e.g. when you read the word "vision", i and o are blurred). Otherwise, I wouldn't have been able to tell or my brain would hallucinate and fill out the gray patches like how we don't recognize that there's a blind spot in our eye where there's no retina cells. So the chances of having this type of complication and you noticing the complication is very rare.
Regarding my oxygen concentration, I was able to use my wheelchair and move around fine with 80% concentration and didn't have problem breathing and Dr.D told me that it would resolve soon so I didn't think too much of it. I think if you are healthy and young, 80% seems pretty okay from my experience.
Interested in doing the Precise 2.2 with Dr. Debipashard as-well. I'm really into fitness/working out, did the Dr give you any time frame where you would be able to get back to lifting weights? Specifically for the upper-body?
Well for upper body, you can do bench, pull ups, dips or anything that you do while sitting down as soon as you feel comfortable doing those. In fact, my house is full of equipments and I gain a lot of upper body muscle during lengthening.
I should be able to walk again I’m 6 weeks so 3month lengthening plus 1.5 to 2 month consolidation for walking again with prec 2.2
Careful with nail removal whenever that will be. Someone else on the forum allegedly had a fracture after nail removal with your doctor.
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