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[GodsGrace]

Day 4 - Jan-21-2022


Slept about 6 hours intermittently. The swelling up until this point is still super high. Pasting one of my old comments about my swelling part as it would make sense at this place.

"So far I would say the swelling part is the worst and which makes things horrible for now. Also the tightness of the plasters with the swelling wow what a deadly combination it's like a balloon that's about to be burst or something that is about to explode under your knees. The Polar Bear ice pack machine is the savior so far with swelling. In my case it doesn't reduce the swelling it just numbs the area so I can feel 30-40% less swelling pain. But if I don't keep the ice pack on my leg even for 20 mins forget it and it goes back to 100% swelling pain. So keeping that for more than 20 hours in a day for now."

Also I started to feel that my left leg is more worse than the right in terms of all the pain. Any small movements give me a lot of pain on my left leg. I have pain in my right leg but it is more manageable and it's only pain from the swelling and sutures and bone cut areas. Whereas in left leg along with these pains I have some muscle contracture pain or kind of constant pulling on one side or combination of both something like and I feel a great pull on the outer left calf area. I don't know exactly to put it across but I hope you guys get the picture. I have a feeling that once the bone is cut and rod is inserted after the cut they will do a rotational test and once that test is done they need to keep the leg back to the original position. I believe there might be a slight off there from its original position the reason I am saying is my left leg is trying to pull me in one direction always to the left. I will have a clear picture of this issue when my swelling comes down. Will keep you posted on this one.

They stopped IV on this day onwards and any antibiotic or morphine that you need is directly injected into you arms using the IV inlet not through the drips. I asked the nurse that is today my discharge day? She said if you want to you can but you can stay couple of more days as well. I decided to stay one more day just to be safe.

Had my PT session. Had about 25 steps in the walker including turning using the walker. It really freaks me out in terms of weight bearing.

Since the IV drips is no more I started eating my lunch and dinner however didn't take the laxatives yet.

[GodsGrace]

Day 5 - Discharge Day - Jan-22-2022


Had a good sleep about 6 hours. Had my breakfast and took laxatives this time as the nurse was insisting me to have a bowel movement before the discharge. Kept drinking a lot of water and finally around 12 PM had the bowel movement. The initial push was tough but after that it was all good. Felt really good after the bowel movement.

Had my PT and took about the same amount of steps as yesterday and didn't want to push too much. One guy from Gardens pharmacy came on Day 4 (forgot to mention on day 4) and gave me the toilet commode, wheelchair, and prescribed medicines. It had the following tablets in it - Acetominophen, oxycodone, xarelto, vitamin D3, and 2 small nasal sprays.

I hired a wheelchair van as I didn't want to go through the pain of transferring in/out of the car from/to the wheelchair. He charged my about $115. I discharged from the hospital at 4.30 PM and 2 nurses helped me with moving me and my stuff near the van. Reached home at 5.30 PM and it was really good to be back at home. The moving process was very tiring so had dinner early, took 2 oxys and 2 tylenol 325mg and hit the bed.

[tallerwouldbenice]

Dude you need to eat. Force yourself if you have to.

You're very lucky to have your wife with you

If you need shower chairs and things like that I recommend Homecare America in Jupiter

The next few weeks are going to be rough but it will get better. Good luck

[GodsGrace]

That eating part I explained only during my first 3 days in the hospital. 4th day I started eating well and 5th day I got discharged. Ever since I was discharged I have been eating like a glutton at my home. I may have lost a few pounds in the hospital but ever since I moved to home and since I am eating well now my weight is where it was before the surgery, lol. Hopefully, I won't put on any extra weight. Let's see.

[GodsGrace]

Posting everyday on the forum after the surgery is becoming harder and harder because of the things that need to be dealt with. Even to do few small stuff it takes forever and also suffering of the pain, doing self PT couple of times a day along with the out-patient PT. It's very tiring and exhausting. I have few minor setbacks also. I will explain in my future posts.

[GodsGrace]

Day 8 - Jan-25-2022

The bandage was removed and officially started my lengthening on this day. I was very excited to have the ERC machine on my leg and when the ortho person (carla) showed me how to use it and she helped me doing the first 0.25 mm I was literally having tears of joy. I was expecting for this moment for so many years and finally it's happening and it was such a nice feeling.

Had my first PT session today.

[GodsGrace]

Day 10 - Jan-27-2022

I got my splints or dorsiflexion boots from Falks Prosthetics on this day. However, I should have got the splints by 2nd or 3rd after the surgery but in my case they forgot to update them it seems so I was measured only on the 3rd after my surgery and got the boots on the 10th day. It's an hour drive from my place one way and the prosthetics center made me waited for 3 hours so overall it's a 5 hours sitting on the wheelchair with swollen legs. I forgot to take my pain killers and the journey was very uncomfortable, totally.

When I started using the splints mornings are ok but night time since the legs don't have enough strength the splints are really heavy on my legs. So I have my own light weight splints which I bought from amazon that helps me a lot at nights.

I read from few diaries that wearing the splints is mandatory for paley patients when you are doing your tibias. So I bought a pair of splints 6 months before the surgery and slowly got used to it for upto 20 hours a day. Started with 1 hour a day and gradually increased the amount of wearing time and became more comfortable with it over 6 months. It's really a nice home work I did and it helps me a lot with my broken legs now.

The splints are really helpful for even few non-lengthening issues. I used to play tennis few times a week and sometimes I feel heel pain or sometimes hamstrings or calf muscle soreness. On those days when I wear the splints at night and wake up in the morning that's it no more pain. It works really great.

[GodsGrace]

Day 11 - Jan-28-2022


My left tibia is the weakest compared to my right tibia. Right tibia is more flexible with less pain whereas my left tibia has all sorts of pain.

Ever since I started my lengthening I have been hearing the clicking sound on my right tibia and no sound on left tibia. Had a feeling that the right is not lengthening properly so I shot an email to Dr. Robbins mentioning about the clicking sound on my right tibia.

When I lengthen my left I have this sort of burning sensation in the bone breaking area and also muscle soreness but on my right I don't have any of those so definitely something is not right. However, all I can do at this point is just keep lengthening until he responds back.

[GodsGrace]

Day 13 - Jan-30-2022

Dr. Robbins had responded back saying that the clicking noise concerns him and he asked me to come to the clinic tomorrow (Jan-31-2022). I had my pre-admission testing at 9.30 AM and Pre-Op appointment with Dr.Robbins at 11.45 AM on Jan-31-2022 since my femur surgery was scheduled for Feb-01-2022. I mentioned the same to him and he responded yes we can do an X-ray and see what's going on with your right tibia when you come and see me.

[GodsGrace]

Day 14 - Jan-31-2022

Busy day with more appointments. I had my pre-admission testing with the nurses at 9.30 AM. They checked my vitals, weight, and all other necessary stuff. They didn't do a blood work and mentioned we can do it tomorrow when you are here for the surgery.

Then I went and met Dr. Robbins at his clinic. We took the x-ray and found out that the the nail on the right tibia was not lengthening as expected. There's a discrepancy of over 2 mm so far. Left is supposed to be where it should be where as right is off by more than 2 mm. Basically right is also lengthening but it is not lengthening at the expected rate. So Dr. Robbins told we are going to do 1 full mm today with the lengthening device at the clinic now and you keep continuing your lengthening as usual at home and when I do your femurs tomorrow I will double check your right tibia by adjusting the bottom screw sites. He zoomed  the left tibia x-ray and right tibia x-ray and showed me that the chip on the left has extended nicely whereas the chip on the right did not.

I went for my PT and I was on my way back home and here comes the fun part. This is applicable for Quadri-lateral patients. You will be given blood thinners after your first surgery but you should stop taking that at least 72 hours before the 2nd surgery to avoid lots of blood losses. I was not told about it and until this day I was taking the blood thinner. The coordinator called me and apologized me that she should have informed me but I said it's alright and asked do I need to wait a week more? She said Dr. Robbins will call you and let you know when the surgery would be. Few mins later I got a call from Dr. Robbins and he asked me when was the last time you took the xarelto (blood thinner) I said today (Jan-31-2022) at 8 AM so he replied then we are good to have your procedure done on Thursday (Feb-03-2022) as it would be more than 72 hours before your surgery starts. I told him I am good for Thursday.

On this day I lengthened 0.75 mm on left and 1.75 (0.75 + 1) mm on my right.

[GodsGrace]

Day 15 - Feb-01-2022

Dr. Robbins sent me an email in the morning and asked me to stop by the clinic to do an additional lengthening of 0.5 mm today and tomorrow (Feb-02-2022) along with my usual lengthening at home. This will help him identify the issue with the right tibia more whether the additional lengthening will make the chip expand as expected or if the additional lengthening was not helpful at all then he will do the necessary things to make it work as expected.

On this day I lengthened 0.75 mm on my left tibia and 1.25 (0.75 + 0.5) mm on my right tibia.

[GodsGrace]

Day 16 - Feb-02-2022

I went for my PT and also went to the clinic to do an additional 0.5 mm lengthening.

On this day I lengthened 0.75 mm on my left tibia and 1.25 (0.75 + 0.5) mm on my right tibia.

[GodsGrace]

Day 17 - Feb-03-2022 - Femur surgery Day

Time is 3.30 AM in the morning and I am unable to sleep as I am all excited for my femur surgery today and check-in time is at 10.30 AM. Also I am trying to finish my 0.75 mm tibia lengthening today before I go to the hospital. Just finished my 0.25 mm. I need to wait at least 2 hours in between the sessions as it is pre-configured that way. I will try to do my next session at 6.30 AM and another one at 9 AM. Hopefully, everything goes well with my femur surgery. Talk to you guys soon.

[thankscience]

Best of luck!

[GodsGrace]

Thanks man.

[GodsGrace]

Feb-03-2022 - Tibia+17 - Femur surgery Day

Checked in at the hospital at 10.30 AM and went through the pre-surgical formalities and signed all the necessary paper work. The IV was attached in my left arm and I was wheeled to the OR. Woke up a few seconds later and I was told you surgery was done and went well and you will be moved to your room shortly. I was so happy to hear that the surgery went well.

Once I was in the room I was able to check my phone and Dr. Robbins had emailed me mentioning that he didn't have to do anything on my right tibia as the additional lengthening that was done on my right tibia worked well and it almost matched the lengthening on the left tibia. So there is no discrepancies for now in tibias but we will keep an eye on it every 2 weeks and see how it goes. A big sigh that nothing had to be done on my right tibia as I was little worried about it but all good for now.

The max pain level I hit on that night was I would say 6 (moderate) and there was no crazy sharp pains like I used to have after tibia surgery. But the problem is the legs were swollen like hell that I could not move my legs even for a bit. After tibia surgery the pain was horrible but I was still able to move my feet with the help of my hip and thighs but after the femur surgery it was all stuck like a concrete and full of discomfort. I slept for about 10 hours (sound slee) waking up every 2 hours for the pain meds. That night went really well except for sleeping on the same posture.

[GodsGrace]

Feb-04-2022 - Tibia+18 - Femur+1

Had my PT session today. It was very painful as I couldn't move my legs at all. My butt was stuck to the bed and made things even more worse. Did few PT workouts like ankle squeeze, knee bending, leg raising, leg side in and out. Transferred to the wheelchair with the help of the walker (probably 4 to 5 steps) and PT guy and sat in the wheelchair for about 30 mins. While I was on the wheelchair the Occupational Therapist came and I did brushing and wiping my body with wet wipes and changed the gown. Felt fresh and I was transferred back to bed the whole process was very tiring and took about 2 hours including the PT session. Had my lunch and took pain killers and slept for about 3 hours.

Lengthened 0.75mm on my tibias with the help of the nurses.

Because I slept in the afternoon for 3 hours my sleep at night got disturbed and started sleeping at midnight 12 and woke up at 5 AM with the moderate pain with more discomfort on my butt and hip.

[GodsGrace]

Feb-05-2022 - Tibia+19 - Femur+2

Pretty much the same routine as yesterday. Today PT was even more painful and he made me sit in the wheelchair for about 90 mins. He said the longer I stay out of the bed it gets easier with the swelling and I couldn't agree more. The entire PT session took around 2.5 hours and finally I was transferred back to bed. Took the pain killers and felt good. Controlled my sleep during the day to get a good sleep at night. Hopefully it works out well.

Compared to yesterday, I am able to squeeze my knees after my PT session today. I am doing 3 sets of knee squeezing every 1 hour to keep the blood flowing. Hopefully, tomorrow I will feel even better with the swelling. Fingers crossed.

Lengthened 0.75 mm on my tibias. So far, officially I have lengthened 10 mm (1 cm) on my tibias according to my calculation and as per the ERC machine.

[Height Journey]

I wish you the best. It's interesting to read the diary of a quadrilateral LL patient.

[GodsGrace]

Thanks HeightJourney2021. I have been following your youtube channel and pretty much watched all the videos and liked them as well. What you are doing in your channel is an amazing task and helps the future LLers. Even before my Femurs surgery I watched some of your videos and prepared mentally for it. Thanks for your videos.

[GodsGrace]

Feb-12-2022 - Tibia+26 - Femur+9

Sorry guys for the late update. For the last 3 days I have been suffering with lots of pain. Unable to sleep at all. Looking like a zombie. Every 4 hours taking 2 Tylenol (325mg each) and 2 oxy (10mg each) even that doesn't seem to help with the pain. I sent an email to Dr. Robbins that the painkiller is not working as expected on me. Please suggest me something else for a while. I don't feel much discomfort in tibia. Just the tightness and stiffness which goes away with little massage and stretches. Tibia is absolutely fine. Even from 5 days before the femur surgery I only took 2 oxy before the PT session and rest of the times I was able to manage the pain only with the Tylenol in tibias. But after femurs surgery everything was manageable in the hospital but of course with more pain when compared to tibia. On Feb-7th I got discharged with the same set of prescribed medicines and I started with 2 Tylenol 325 mg and 1 oxy every 6 hours and it was ok for the first 2 days. But from the 3rd day onwards it didn't work so I started increasing the dose and now I am taking 2 Tylenol and 2 oxy every 4 hours even that doesn't help at all. I am afraid that I am taking too much of oxy a day and I am running out of oxy quickly. Let's see what Dr. Robbins is responding back.


Any Quadri-lateral (also non-QL) veterans, if you had come across this situation or experienced this same situation please feel free to give me an advice or suggestion and see if that works for me.

As long as the painkiller works for me and I am able to sleep at least for 4-5 hours then I am good. I just need a painkiller that works well on me. I hope Dr.Robbins would help me out with my situation.

Lengthened so far,

Tibia: 14.5 mm
Femur: 3.25 mm
Total: 17.75 mm

[tallerwouldbenice]

Femurs very painful for 3-4 weeks. You can ask for a pain specialist at Paley (it'll cost a bit)

Your intake seems high but at the same time you are QL so...

[GodsGrace]

Thanks for the information, tallerwouldbenice. I have an appointment with Dr. Robbins on Wednesday (16-Feb-2022) but since I sent an email and also spoke to the physician assistant they moved that appointment to tomorrow (Monday 14-Feb-2022). Hopefully he gives me some good pain meds at least for a short term which works well on me. Fingers crossed.

[motoboarder]

GodsGrace, schedule a meeting w/ Dr. Guiffrida. He/she is specialized in pain remedy. Explain the pain & they will prescribe you the right medication. I learned this from talking to other LL patients during my PT wait times.

Godspeed! Do you best at PT and move the legs as much as you can. I know it hurts like a b*tch at the beginning, but it will help get rid of the stiffness in your legs.

[GodsGrace]

Yes motoboarder, I had an emergency meeting with Robbins on Monday (yesterday) and he recommended me to meet him asap. Dr. Guiffrida's scheduling team is very poor and I have been trying to schedule an appointment since yesterday and left a bunch of voice messages. He was here in West Palm Beach today and I was requesting them to have a meeting with him as I am coming for my PT today at west palm beach but they never agreed for it. And they said again on next Tuesday only he is available in West Palm Beach clinic. I said I can't wait that longer and where else or in which other office I can meet him. He is available at Fort Lauderdale office and finally I spoke to his assistant and got my appointment for tomorrow (Feb-16-2022) at 9.30 AM. Hope I will get a good pain med that works for me. There was a little quarrelsome between me and his assistant but I explained her you need to understand my situation also I didn't sleep for 3-4 days and my pain level at night is constantly 8-9/10. That's why I was little frustrated in leaving 5-6 voice messages and she understood my situation and got the earliest appointment for me for tomorrow. Hopefully it works out well.

[GodsGrace]

Also motoboarder, despite all these sleeplessness and pain level I never skipped my PT and never skipped my personal sessions at home and still standing at least 5 times (each 30 secs) a day without fail.

Also yesterday I did only one turning session due to ridiculous pain in my legs. Just 0.25 mm in tibias and 0.25 mm in femurs.

The main set back I have is that the pain meds are not working for me. Hopefully I will have a solution with the other narcotics doc Giufridda tomorrow.

[GodsGrace]

Feb-16-2022 - Tibia+30 - Femur+13


Alright guys today was a very tiring and rough day for me. Slept only for 2 hours (disturbed sleep with lots of pain) and woke up at 6.30 AM. My wheelchair van service came to pick me up by 7.30 AM and reached the Fort Lauderdale office (Canterspine - seems like a franchise or other office of paley institute, IDK exactly) by 8.45 AM. My appointment was at 9.15 AM so waited for 30 mins and met Dr. Giufridda at 9.30 in his office. He was asking me few questions about when the surgeries happened and what's going on with the pain med situation. I explained him everything very clearly and he said sometimes different bodies react differently to the set of medications. So he finally prescribed Percocet for me. And as it has acetaminophen in it already I should not take the tylenol. The dosage level still goes like the same as oxy meaning one tablet in every hours. Also he was asking did they already prescribe you gabapentin. Yes during my last visit with Dr. Robbins on Monday (Feb-14-2022) his assistant prescribed me gabapentin. I believe it helps with nerve pain. The dosage level for gaba goes like this, first 2 days 0-0-1 (meaning only one 1 in the night) the next 2 days 1-0-1 and the next 2 days 1-1-1 and the next 2 days 1-1-2 and the next 2 days 2-1-2 and the next 2 days 2-2-2. Once you reach this level you will continue with this dose (basically 6 tablets a day) and they will evaluate you in your every 2 weeks follow up and make any adjustments if needed. For now this is what I am going to follow for the next 2 weeks as my next follow-up appointment with Dr. Robbins is on Feb-28th and with Dr. Giufridda on March-8th.


I asked Dr. Giufridda what could be the reason oxy is not working for me? He replied there is no one definite answer for that question, aging factor and different body types there are so many reasons like that. I am in my late 30s so thought for me aging could be a thing but I could be wrong and who cares. As long as the the percocet does what I am expecting I will be so happy to achieve my target. Fingers crossed.

Then From there I directly went to my PT at 12.00 PM. Reached there by 11.20 AM and waited for 40 mins before the PT and after the PT is done my wheelchair van service was late by another 40 mins to pick me and by the time I reached home it was 2.30 PM and was very tiring. On top of that I finished my 3 lengthening sessions with 2 hours apart and now my quad muscles are very tight. SMH, Hopefully the percocet works.

Lengthening statistic so far,

Tibia: 16.25 mm
Femur: 5.75 mm
Total: 22 mm

Wish me luck guys. Thanks.

[motoboarder]

Best of luck GodsGrace! Try your best at hamstring & stomach stretches. They will help loosen quad muscles.

[GodsGrace]

Thanks buddy. Yes, I am doing my best to keep up with those stretches.

[GodsGrace]

I got my X-rays during my last meeting with Dr. Robbins on Monday (Feb-14) and I will soon post the X-rays here.

[6CMFemurs]

Sorry to hear you are going through so much pain. It really sucks to be suffering so much and have to see outside specialists far away while being disabled. I remember it took me a month before I could sleep well and every journey out of town was such a struggle at the beginning.

Would you say most of the pain is coming from the tibias or the femurs at this point?