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Posted on Jan 11, 2019, 3:00 am
#11

Congrats man!  The hardest part is that after one month or two months you get tired of the routine and stop stretching.  Whatever you do, do not stop ,not even for a day.  I took a 2 day break and lost about 20-30 degrees on my hamstrings and never really got it back :p

Also, take it easy the next couple of weeks don’t try to force yourself to weight bear too much or you’ll aggravate a lot of surgical pain. Your strength will come back fast, don’t rush it. Trust me!

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Posted on Jan 11, 2019, 3:08 am
#12

Day 3 - Discharge Day

My final day in the hospital started out nicely. I slept very well through the night and was able to pee into the urinals with no issue at all.  Later in the evening on Day 2,  my nurse had taken me off the Morphine and now had me taking Norco, since this was the pain management I would be using at home.   The Norco seemed to do a fine job at regulating my pain, especially when not moving my legs.   Honestly, my pain level was at a 1-3 maximum while in a resting state.   After a pretty chill morning, the friendly nurses came in and offered me a big breakfast; actually she hooked me up with two breakfasts because I was starving.  Dr. Mahboubian came in to check on me; which was pretty awesome, considering that it was Saturday.   All in all, our chat was great as he reinforced that all looked good in the legs, very little swelling.  I raised the question about my left leg pain and the Doctor felt pretty confidence that I should see improvement over the next week or two.  Doctor emphasized the importance of keeping the weaker leg, especially, stretched as to ensure that range of motion did not take a hit during this first week.  That was that. I was pretty much coasting until now and was set to discharge at 3:00pm.  I did, however at about 11:30am, have a PT session.  It went pretty good. I learned more vital stretches and was able to get up on the walker.  Again, unfortunately, the left leg soreness prevented me from doing to much damage to the floor while on the walker...lol.  I took about 4 to 6 mummy like steps and was put back into the bed.   The PT's said it was very normal to have difficulty walking or doing much activity on your legs immediately after surgery.  The strength and flexibly will come back quickly with physical therapy. I knew this and was satisfied with the answer.   At about 3:00pm my transport van came and picked me up and took me back home to my apartment.  Fortunately, I live only about 50 minutes from the Doctors offices so it really does feel like a simple outpatient kind of procedure for me.   I chose a wheelchair van transport since absolute safety was the only option i would accept for myself; especially in the post - operative state, I was in.  I arrived home to my brother and sister who were waiting for me.  I rolled in through the front door; greeted with love and smiles.  It was a bit rough at first since I was not able to weight bare at all... They had to carefully transfer me to my wheel chair and eventually to my bed.  I think it must have taken about 30 minutes per transfer.  It really is just a brand new thing that takes a bit of getting used to.   Having said all this, the discharge day was great and I was glad to be back at home.  My Sister and Brother switch off on the AM and PM duties of caring for me for the first few weeks; or until I can safely get around without a wheel chair.  My sleeping on this night was just okay. I didn't sleep much; primarily because I was thinking about so many things...mind was racing! With this in mind, I managed to get some good sleep eventually and experienced very little pain throughout the night.   

Day 4 - My first full day at home

Ah, yes...the wonderful feeling of waking up in your own bed..... only difference this time is that I can't move. LOL! All in all, a decent day. I was transferred out of bed by my brother into a wheel chair and it was a bit painful.  Since I'm not able to put any weight on my left leg yet; there isn't much of an ability to support myself while getting up into the walker.   You can't push off at all; so I'm sure you can imagine this.   It's still very early; so my bro did most of the work.   Once in the wheelchair, I did all the normal things people do on the weekend... watched some TV, ate good food, caught up on some work stuff and spent a bit of time on my balcony.    Pain was minimal when not moving my legs.  We're talking pain levels at 2 or 3 at maximum.  I'm getting pretty good at moving around in my wheelchair too! I can maneuver my entire place with no issue.   I cannot wait to graduate to the walker in a week or two, however.  One scare did occur later in the night... My legs started to swell a bit; and I panicked i believe, since up until now; i had barely any swelling. I actually called the doctors office to leave him a message; and wow.... at 10:00pm at night; the staff actually connect him through.   I can't say enough about that... my Doctor taking a call that late is pretty rare and very appreciated. Dr. Mahboubian suggested some additional ice packs and that would likely help and to just reach him if the swelling didn't come under control.   I applied Ice and within minutes swelling was down.  Went to bed soundly moments later.

Day 5 - Subtle improvement in Left Leg and meeting with a home care aide

The left leg has become a growing theme so far as I am really counting on it to get better right now so that I can begin using a walker.  I'm happy to report some slight improvement after my first PT session.   The PT specialist went light and focused on range of motion and strengthening.  By later in the day; I felt less pain in the movement of the leg.   Later this day, I also met with a home care representative.  I wanted to make sure I had a backup plan in place in case a friend or family member was not available to assist me throughout any days in the coming few weeks.   It is vital that someone be home with you for the first few weeks.  Very rarely is one able to support themselves all alone, immediately after this surgery. The rest of my day was filled with the normal stuff, working, spending time with siblings and taking it easy.   I had 2 PT sessions on this day (Counting my sister stretching me) and plan on stretching 3 times per day 7 days a week until I'm back to tip top shape.



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Posted on Jan 11, 2019, 3:13 am
#13

Quote from: superusercj1 on January 11, 2019, 03:00:46 AMCongrats man!  The hardest part is that after one month or two months you get tired of the routine and stop stretching.  Whatever you do, do not stop ,not even for a day.  I took a 2 day break and lost about 20-30 degrees on my hamstrings and never really got it back :p

Also, take it easy the next couple of weeks don’t try to force yourself to weight bear too much or you’ll aggravate a lot of surgical pain. Your strength will come back fast, don’t rush it. Trust me!

Thank you CJ1 ! I'm already starting to feel improvement; and have just been focused on keeping range of motion and safe leg strengthening exercises during my first week post - op. I am hoping that in another week or so; I can comfortable weight bare. I do not want to push it. The post surgery impact is no joke and you're right; I should take it easy. Thanks Man.  Would love to talk to you if you're open to that.

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Posted on Jan 11, 2019, 3:59 am
#14

Sure - PM’d you

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Posted on Jan 11, 2019, 4:41 pm
#15

Day 6 - More subtle improvement in left leg

Little by little my left leg and right leg for that matter has showed improvement.  One key point that I want to emphasize for future LLer's is that after surgery; TAKE IT EASY...don't try to jump on the walker and race yourself around.  It's likely that you will only be able to take a step or two due to the post-surgery pain.  Here is analogy for you.  When you're out on the football or any sports field and you sprain/break your ankle...you're hopping right? You're not putting even one gram of weight energy on that leg because you simply cannot bare the pain.  Well, imagine now 2 broken legs right?  In talking to other LL'ers I have realized that the first 2 - 3 weeks of this is really tough and you have to count the minor victories and maintain a strong motivated stance.  The most important thing to do starting out for the first 2 - 3 weeks is keep your range of motion in check and stretch, strengthen 3 times a day.  You'll be back on your feet and in the walker more regularly soon enough. No reason to push it at the very start.  Once you heal from surgery in week or two..its time to push for those inches! I'm excited about that.   In other news, this day was pretty straight forward.  I had 2 PT sessions with my sister and 1 PT session with a professional Home PT staff.  This helped. The Pro PT staff recommended some additional stretches to help build my strength and smooth out the soft tissue.  Additionally, since I'm at home for this entire process, I put in a normal full work day.   In knowing that I was going to pursue this surgery; I purchased a brand new computer (8th Gen Processor) and 3 27" monitors with all the remote connections I needed. I'm 100% functional to work and continue to grow my company as I go through this long and tough process of CLL.  In fact, my mindset is that the 1st quarter of 2019 should be the highest earning for my company in its history!  I have found that by doing other things while you're engaged in CLL helps you better manage the pain and other aspects of this.  I slept well this night, little to no pain, and making little progress each day.   

Day  7 - Officially One Week Post Op

Well, my friends. It's officially one week post operations.   I'll be to the point.   2 PT Sessions today + my own stretching.   Eating healthy and taking all my needed drugs and other vitamins like vitamin D, C, and multi-vitamins.   I even got a GYM session in. I setup a home gym in my apartment.  My brother spotted me on the dumb bells and I used cables for the rest. I'm determined to come out of with lean and looking good physique just like before the surgery.  As the pain subsides from my legs and my left leg specifically; I'll be able to do more for the upper body and I cannot wait.   Pain was at 2 - 4 today when not moving legs.  5-7 when moving and I'm careful not to plant full weight on my leg as it ill only aggravate the post surgical pains at this point and set me back.   Fortunately, other than when I'm obviously trying to place weight on my broken legs; I barely have any pain what so ever.   I am able to sleep easily through the night and the prescribed Norco has been effective.   

Update on my left leg; its a little better.  The subtle movements that used to result in a painful shreeks are subsiding. Right leg is strong and I sense it could likely do its part in supporting me on a walker. Left leg still has a bit longer to go. 

Guys, tomorrow is a big day. I meet with Dr. Mahboubian for the first time since my surgery to assess my freshly cut legs and to BEGIN GROWING!  I will meet with the representative from the Nuvasive company I believe to review the process with the lengthening machine and ask up any questions I might have.  I assume they will test the machine on me; so I should be a .33 milometers taller after my appointment tomorrow! I'll provide update soon.  This is starting to get real interesting!

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Posted on Jan 12, 2019, 1:22 am
#16

Amazing news - best of luck!

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Posted on Jan 12, 2019, 2:25 am
#17

Day 8 - Post Op Visit with Dr. Mahboubian and First Lengthening Treatment... I'm 0.33mm taller now.  It's a start right?!

Time sure does fly by.   It's hard to believe that its been  8 days since my CLL surgery with Dr. Mahboubian.  Today is a big day for me as I visit my Doctor for the first time since my surgery.  I arrived at his offices and their very kind nurse Donna, greeted me warmly and asked me a few questions on how I was doing.  She said that all i was describing was perfectly normal and began to take off the wound bandages that lay on my stitches. She also mentioned that they would be taking off my stitches today.  I was happy about this for a few reasons.  Number 1, the bandages and tape they use on the incision areas are pretty big; so you feel like you have paper padding on your butt and thighs and its uncomfortable.   Secondly, It's just great to know that your wounds have healed well enough to a point that stitches can be removed.   Donna did a great job taking care of me.  One funny moment... there was one stitch area that was a bit scabby; and Donna escalated to Dr. Mahboubian to assist.  He came in and like a boss removed it in 2 seconds. I can remember saying... "You're going to call the anesthesiologist right?", before he did anything...haha I just know that when Dr. M touches me it hurts! lol.  All joking aside, he has a good relationship with his staff and that is so important.   I was stitches free!

Now it was time to get down to business.  Dr. M examined me and said that all was looking good. Little to no swelling and he was also very pleased with my strength and ability to raise either leg all the way up with authority.  This showed strong legs, post surgery.   He did note however; that I need to work on the knee raise and bend.  I will most certainly do that daily.   Additionally, I explained the issues I had with my left leg being behind as far as pain tolerance compared to right leg.   He acknowledged that this was normal and it could be another week or two until the left leg pain began to clear away.  Dr. M emphasized that I need to be on my walker as soon as possible even if its just a few baby steps.   The walking promotes bone growth and strong bone growth at that; so it is vital that I press forward and overcome the left leg issue as soon as possible.

After examining me and saying that I was looking pretty darn good (better than many of his LL patients), he allowed the NuVasive rep to show me the Lengthening machine and how to lengthen.   It's very simple.  Put the machine on the mark written on your legs and push a button. Wait 2 minutes and you're done. Now its time for other leg.   I did my first treatment right there in the office and now I'm officially 0.33 mm taller!  It feels good to grow, let me tell you.  To be honest, you can't feel anything while the lengthening is actually going on. 

The Doctor has prescribed that i lengthen 0.33 mm 4 times a day for the first 5 days.  After that, I am to lengthen 0.33 mm 3 times a day.   I will be having my next follow up appointment in 2 weeks from now and I should be a 1/2 inch taller?!  Let's hope so.   Also, let's hope my left leg cooperates for me.   I'll update again shortly on how my weekend goes.

Thanks guys and talk soon,

Other Key Notes:

-Lengthening is being done 100% at my apartment
-Lengthening prescription is as follows: Goal 8cm on each femur - 0.33mm 4 times per day for first 5 days.   0.33mm 3 times per day there after.
-The first 2-3 weeks, where Care giving is needed, I have my brother who comes during evening to help and my sister during the morning.   I have connected myself as well to a care giving agency that can spot me if I ever need help. I just need to give them 12 hours notice.
-My Transportation to Doctor Appointment was in a Wheelchair Van Transport. Safety first for me.
-I Take Norco every 4 hours for pain
-Xarelto Daily to help prevent blod clots
-Vitamin C and Vitamin D daily to promote bone grown
-Healthy, rich diet with protein, calories and overall balance diet for good health in order to promote the bodies nature regeneration factory
-Protein Drinks with whole milk
-I am PT with my sister every day 5x per week and with a professional home health PT 3x a week.  I plan to expand the professional home health to 4x or 5x
-I am still working full time and then some...I am able to be 100% productive and functional at home via internet, 3 monitors and a great computer. I'm tied into my offices via cloud technologies, web cam and VPN for data access
-My workouts continue for upper body and cardio. I have bar bells and bow-flex for upper body and stationary bike for cardio and other leg exercises.

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Posted on Jan 13, 2019, 12:56 pm
#18

Great diary! Keep on!

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Posted on Jan 13, 2019, 8:40 pm
#19

Day 9 - Bring on the Aches and hello to my Right leg  [1.32mm Taller]

Greeting guys.  Day 9 brings further healing to my left leg which is great.  I plan to reattempt the walker on Wednesday. I'm going to give myself just a few more days of natural body healing before I reignite that post surgery inflammation pain.  I continue to do my stretching and strength excercises 3 times a day and throughout the day I keep my legs moving up and down, side to side, etc.  I may try the walker a day or two sooner at my discretion.  I know it's very important to get walking ASAP; so I'm looking forward to taking this step.  I want to reemphasize for future LL'ers that the first 2 - 3 weeks are very tough.  I have consensus from several past LL'ers that I have talked to regarding the procedure that its best to "take it easy" and not push to hard the first 2/3 weeks.  It's good to work on range of motion and perform strengthening exercises; but if you try to put to much weight on your surgically impacted legs; the inflammation from the surgery is going to linger and create havoc for you.     

As much I have been bragging about how great my right leg feels as compared to my left leg...well scratch that.   I think you're officially introduced to the LL procedure when for no logical reason your leg starts to hurt, lol.  My right leg has been going through a fairly painful and annoying cramping since Friday night.   The pain level on Friday night was Level 7/8.   The pain lingered into the following day and hovered around a 6/7.   No fun at all.  The answer to the pain was popping a Norco pill.  1 hour later, roughly, my pain was manageable and down to about a 2/3. I will say that on Friday morning, I actually did aggravate my right leg by...guess what?....Putting weight on my right leg by accident.  I have a feeling that I'm going to stick by my opinion of taking it slow and easy for the first 14 days post surgery.   

My lengthening is going smooth so far. I lengthened 1.33 mm as per Dr. M's prescription and will continue at this rate for 4 more days and then proceed to lengthen at 1mm a day there after.    Guys, so far, I can say that each day has gotten a little better.  I hope this trend continues. 

Additional Notes - Good things to have


1. Portable Sink and someone to wash your hair.  For the first two weeks you will likely not enter into most showers for 2 - 3 weeks since it's extremely dangerous to try to get into one. - https://www.amazon.com/Portable-Shampoo-Treatment-Height-Adjustable/dp/B07F2LQK5V/ref=sr_1_5_s_it?s=hpc&ie=UTF8&qid=1547412297&sr=1-5&keywords=portable+sink+for+hair+washing
2. If you must get into the showers, purchase a transfer chair.  This will allow you to slide from outside your shower, then into your shower easily while sitting  https://www.amazon.com/Transfer-Disabled-Sliding-Cut-Out-Handicap/dp/B000NGUD94/ref=sr_1_2_a_it?ie=UTF8&qid=1547411612&sr=8-2-spons&keywords=transfer+chair&psc=1 .
3. Walker - https://www.amazon.com/Deluxe-Button-Folding-Walker-5-Inch/dp/B001HOM4U2/ref=sr_1_3_a_it?ie=UTF8&qid=1547411671&sr=8-3&keywords=walker
4. Reclining Wheelchair - Get one that allows you to fold the back of your seat 180 degrees....this way you can easily nap and change positions without having to transfer. The first week or two...transfers will be a long ordeal for you and likely very painful.   Make it easy on yourself. https://www.amazon.com/Drive-Medical-SSP20RBDDA-Wheelchair-Detachable/dp/B005JIKB70/ref=sr_1_3_a_it?ie=UTF8&qid=1547411691&sr=8-3&keywords=reclining+wheelchair
5.  Keep those legs moving while you're at your desk - https://www.amazon.com/d/Exercise-Bikes/DeskCycle-Exercise-Pedal-Exerciser-White/B00B1VDNQA/ref=sr_1_3?ie=UTF8&qid=1547411777&sr=8-3&keywords=desk+bike 
6. Overbed Table: https://www.amazon.com/Medical-Adjustable-Overbed-Table-Wheels/dp/B074DK5P6F/ref=sr_1_2_a_it?ie=UTF8&qid=1547411891&sr=8-2-spons&keywords=over+bed+table&psc=1
7. Vitamin D: https://www.amazon.com/Medical-Adjustable-Overbed-Table-Wheels/dp/B074DK5P6F/ref=sr_1_2_a_it?ie=UTF8&qid=1547411891&sr=8-2-spons&keywords=over+bed+table&psc=1
8. Extra long Grabber to help your reach things as needed - https://www.amazon.com/RMS-Rotating-Mobility-Extension-Wheelchair/dp/B00THEDK0C/ref=sr_1_1_s_it?s=hpc&ie=UTF8&qid=1547412379&sr=1-1-spons&keywords=grabber%2Bfor%2Bdisabled&th=1 
9. Bed side commode - Useful; but eventually you will be able to walker yourself to the toilet - https://www.amazon.com/Medline-Portable-Microban-Antimicrobial-Protection/dp/B07H7MQWPW/ref=asc_df_B07H7MQWPW/?tag=hyprod-20&linkCode=df0&hvadid=241947247648&hvpos=1o1&hvnetw=g&hvrand=889894857316808302&hvpone=&hvptwo=&hvqmt=&hvdev=c&hvdvcmdl=&hvlocint=&hvlocphy=9031600&hvtargid=pla-530517749653&psc=1

I'll add more items later; but this should get your ideas going.   I currently have incorporated all the above and its definitely been a great help.

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Posted on Jan 14, 2019, 2:54 am
#20

Day 10 - More subtle improvement in post surgery pains. Dull pains introduce themselves in both legs [2.31mm Taller]

Happy to report that the left leg pain and overall sensitivity of joints and muscles through out my legs continue to come under control with each passing day.  My right leg and now my left leg, has just started to experience a dull type pain that lingers in and out.  Pain level 5/6.   At this current moment I'm doing okay....took Norco about 30 minutes a go.  I am keeping my  fingers crossed that the pain levels out in both legs over the next couple of days.  From my conversations with LL'ers of the past, the pain and healing really start to kick during week 3 (after 2 weeks)... So I'm doing all I can to be prepared to progress.

All-in-all, I can envision myself coming into a routine over the next several days.

My hopes and goals for the up-coming week:

- Take legitimate walker steps
- Pain to come under control for both legs

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