Limb Lengthening Forum

Limb Lengthening Surgery => Limb Lengthening Patients Experiences => Topic started by: forumonly2019 on March 01, 2019, 08:46:20 AM

Title: Femurs with Dr Paley scheduled on March
Post by: forumonly2019 on March 01, 2019, 08:46:20 AM
Hi,

I will have consultation and physical tests done on 4th&5th March and have my femur lengthened with Dr Paley on 7th. I booked homewood suites by Hilton from 13th to April 1st for 206/night ( king bed studio)and 110/night throughout April (king bedroom suite). Suites from 4th - 13th is sold out by homewood so I problobly will stay in quality Inn or nearby hotels for this period of time.

Stats: female, 26yrs, 156cm, looking for 8 cm on femur. currently 120 lbs.

I will keep posting this long journey for future LLers.
Title: Re: Femurs with Dr Paley scheduled on March
Post by: jievince3 on March 01, 2019, 11:13:01 AM
Carry on!
Title: Re: Femurs with Dr Paley scheduled on March
Post by: wannagrowtaller on March 01, 2019, 09:52:22 PM
Good luck!
Title: Re: Femurs with Dr Paley scheduled on March
Post by: Purushrottam on March 01, 2019, 11:55:42 PM
Good luck!
Title: Re: Femurs with Dr Paley scheduled on March
Post by: InFullStryde on March 02, 2019, 02:27:48 AM
Good luck! Looking forward to reading your diary.
Title: Re: Femurs with Dr Paley scheduled on March
Post by: Astronomy on March 02, 2019, 08:26:35 AM
Good luck!!!Expect your posts!
Title: Re: Femurs with Dr Paley scheduled on March
Post by: LongueEpopée on March 02, 2019, 06:00:48 PM
all the best
Title: Re: Femurs with Dr Paley scheduled on March
Post by: goodlucktomylegs on March 02, 2019, 06:24:17 PM
Good Luck.Please update everyday
Title: Re: Femurs with Dr Paley scheduled on March
Post by: forumonly2019 on March 04, 2019, 10:15:45 PM
Thanks everybody:)
Angelique gave us a tour this afternoon at Paley’s institute for an hour then she sent me to st Mary’s medical center (just next door) to do a vitamin D test. ( I didn’t do body scan since I have mailed previous EOS to paley.) Everyone I met today made me feel welcomed and it really reduced my fear towards the incoming surgery.

Today’s highlight:
 * Angelique answered every question I had, showed us pt area and took a picture with me for making a comparison with my new height after three months.
 * Carol Siew was super friendly and helped me with checking the hotel price, she even handed my mom a bunch of candys afterwards:) Also she will refund me the price difference after figuring out the price of bloodwork.

Title: Re: Femurs with Dr Paley scheduled on March
Post by: Erikstang@yahoo.com on March 05, 2019, 08:46:34 PM
Just finishing up same surgery! If you need a great a great private care nurse, mine is now available and she AWSOME has done many lenghtheners.. her name is Denise and she’s a sweetheart too.. her number is 857-249-4442.  Was a godsend having her... well you’ll love the whole paley staff.. the pt crew are great and don’t forget to get up and start walking from day one.. I did and was using my cane on the day I left the hospital..push yourself, be confident and don’t wait around wondering what to do.. get moving.. those nails support your full weight..  Angelique can verify the authenticity of what I just said about the using the cane on post op day 4...she’ll know who posted this...:) . stryde is great!!  I thought to advise one person just for karma sake...  my username is my email if you have any questions feel free to email me good luck you can do it it’s pretty easy if you keep moving and stay positive...  it’s now really easy with the new stryde nail..  congrads on the move to being taller..!!! Good luck!   
Title: Re: Femurs with Dr Paley scheduled on March
Post by: forumonly2019 on March 06, 2019, 07:10:15 AM
Hi! Thanks for introducing me your care nurse, I have my mom here to take care of me though ;) When you started walking post surgery, did your pain level change due to the pressure being put on legs?  I heard from Angelique that someone even walked to his first pt session and he recovered real fast, just not sure if he had high pain tolerance that enabled him to keeping walking haha. Your advice is gold, also thank you for your encouragement!
I will email you if I have other questions and if you want to meet up I’m all for it ;D ;D
Title: Re: Femurs with Dr Paley scheduled on March
Post by: forumonly2019 on March 06, 2019, 08:12:51 AM
On 3/5

My appointment with paley was 8 am. Front desk staff helped me with getting on paley website. After 20 mins, Angelique led us to meet a pt assistant who checked my medical history, general info, and canal size. After 30 mins Dr Robins came in, measureed my legs’ range of motion and such, then asked me to take a lateral x ray for my femur as my eos mailed from ny didn’t have one. When finished I headed back to previous room, Robins confirmed that I need IT band release during surgery, talked a while then left the room. While waiting for paley, this Pt assistant together with Angelique answered many detailed questions. I signed the surgery form and was told to buy vitamin D 50000 supplement at pharmacy. The pt assistant suggested me to have half the pill (a particular one that can make you addicated) instead of a whole for the first week and try to cut this one afterwards.
Around 12pm paley with his assistant came in, they apologized for being late first then looked at my x rays, said my ratio is 0.79 so I’m a good candidate for femoral surgery. I told him my goal is to reach 8 full cm and I will stretch every day to achieve it. He said about 85%-90% of patients can reach this amount. He cleared up my worries of developing arthritis later in life due to my young age. We didn’t have much questions left so our consultation with paley ended quick. Then Angelique led us the way to do pre op check, I checked in at the front desk and waited for 10 mins. This nurse’s name started with E was quite professional, did three tubes of blood draw and tested my urine. She also asked lots of general questions to input into my file. Then she gave me a persciption called silicon. This whole process took two hours. In the end, I met with anesthetist, he gave me options. I agreed to general anesthesia ( which I regret now and will change it to other on the surgery day) and epidural. Signed the paper.

Highlights:
 * Robins looked very confident, and it goes without saying about paley.
 * This Pt assistant was def. knowledgeable in her field as she told us some recent studies related to vitamin D level ( it can anti cancer). The cute part was that in order to help us better comprehend the surgery process she literally draw the incisions on her pants:)
 *  we chatted with Angelique a lot and it felt great, partly because she can speak the same language as my mom.
 * x Ray room: staff there were chill and we made couple jokes:)
 * the nurse was quite lovely, she advised me to put IV on left hand. The anesthetist seemed reliable.
 * i left a paperwork, another nurse came outside and gave it to me.

Complaint:
 * the process could be shorter. I kept answering the same questions over again. (I already covered most of the questions on 4th, the new patient form also includes a lot.)
Title: Re: Femurs with Dr Paley scheduled on March
Post by: totallyred on March 07, 2019, 09:14:11 PM
Can you ask them about the possibility of developing osteonecrosis post im nail insertion.
Title: Re: Femurs with Dr Paley scheduled on March
Post by: forumonly2019 on March 08, 2019, 08:38:29 PM
Sure:)
Title: Re: Femurs with Dr Paley scheduled on March
Post by: Cas on March 08, 2019, 09:05:49 PM
Hey, how was the surgery? :)
Title: Re: Femurs with Dr Paley scheduled on March
Post by: forumonly2019 on March 09, 2019, 11:51:53 PM
Sorry I just had the nurse pull out the IV on my left hand this morning so I was gonna update, but then I had real bad reaction to oxycodone.... will update soon
Title: Re: Femurs with Dr Paley scheduled on March
Post by: forumonly2019 on March 14, 2019, 05:50:01 PM
Surgery day - discharged ( March 7th - 11th) :

We arrived at Kimmel outpatient center around 6:10am (scheduled at 6:15am). After checked-in we waited 40 mins till the nurse called my name. (My mom waited outside with suitcases.) In the hall way the nurse checked my band and verify my birthdate and such. Then I went inside, had urine checked, measured height and weight again. I was led to a bed, the nurse enclosed it with a curtain and I was told to take off my cloth to put on hospital dress (open on the back but with few straps). The nurse wrapped my belongings with a bag and put it aside. While I was lying in bed the nurse put warm blanket on my entire body, she even gave me extra one for my cold feet. She checked my blood pressure, temperature and heart rate. Then I waited 20 mins or so to get IV on my left hand. Honestly, it hurt. The nurse marked “x” on both my feet. Doctors or nurses I met before came to say hi to me, it felt great. Then anesthetist Jeff told me epdurial was decided to be replaced with one shoot pain killer which lasts 6-10 hours. He seemed real nice, so as the nurse who put IV on me. Jeff was assigned to another patient so I had a younger anesthetist for my operation. I ended up with general anesthesia as it’s the only option. (They explained it to me so I was cool about it anyways) Then pt came in and draw two smiling face on the top of each femur:) Finally my mom was allowed to accompany me and boy was I relaxed:) the nurse put medical hat on my head, let us chat for a while, in the mean time my mom asked few questions towards the operation. Angelique also came in to check on me. A doctor and front desk staff seemed annoyed that we have two small carry-on and two check-in baggage aside,I explained to them that I had specifically called st. Mary’s medical center ahead of time to ask if we were allowed to bring them while staying at outpatient surgery center. WE GOT PERMISSION AHEAD OF TIME. Their response was literally “ of course you can bring all of them,  if your mom can look after ”. So I was kinda mad with their altitude. Should have recorded the call :( Besides this unpleasant experience, everything went great.
Shortly, it’s surgery time. After I said bye to my mom, I was wheeled to the surgery room, it’s not too big but filled with high-tech facitilies. This nice nurse gently moved me to the operating bed. Another male nurse helped too. Then he injected anesthesia into my IV, in a few seconds I became unconscious. ( didn’t see paley, Robbins or others before I was put into sleep)
I woke up around 1:20pm (not accurate) at the same place where I was hooked up with IV. Mom was there and doctor told me it went great. Felt stiffness on the lower body, pain level 1.5, it’s like after an intense workout. The nurse checked my vital then wheeled me to my room. (It’s not a short distance.) I will upload the picture, the room is quite nice.
The nurse checked my vital, hooked up my IV with antibiotic, glucose and anti-inflammation liquid(can’t remember the name). I rested for one and a half hours, then called the nurse asking for four ice pad as the cooler machine cannot be used today. (will upload pic of it, cool stuff)
The worst experience I had during these days were to put a bed pan under my bottom the first time and to have number 2 every single time. The first time nurse helped me to pee was unberable. He had to push my femur over to place the bed pan under me. I didn’t have much arm strength (there was a support rod over my head) plus I still had anesthesia left inside my body so you can imagine how hard it was for me to move and to pee.... portable toilet was real bad overal, the nurse didn’t get me the small size one until the last day. Regular size’s seat height was too high for me so every time I used it my femurs were squeezed and I had to relied on my left shoulder. My left leg was much better than my right one, don’t know why. Despite the bathroom situation, my pain level was 0-2. I had my IV removed the third day ( should have removed it the second day). The needle caused me so much pain when I used my arm stregnth to do anything. My legs were elevated almost at all time, so I had to ask my mom to bend my knees to make the stiffness go away. I must have asked a hundred times. I didn’t watch much tv or even use cell or chat a lot with my mom as I was too busy for these things: pee, take number 2, sleep, nap, eat, change position including the way to put the cushion under my legs), try to walk, bend knees, do breathing practice, get vita signs checked by nurses, replace ice pack(cooler machine is a mistake, it’s way too cold and heavy), have snacks, ask for juices, be wheeled to hallway for fresh air, do pt (lasty three days) and such. Everything took longer than usual, my mom did more than nurse did cuz I just relied on her:) Generally, day nurse was not as good as night nurse. Speaking of nurses at the hospital, I wrote down a list of names as I think these hardworking heros are worth mentioning: Carolina, alekis, Jenn, all pts(Especially the latter two, really helped me out *and good looking guys..),Andrea, Judith. The last day I met Osiris, paley’s assistant, she gave me essential info about incoming pt, medical details and local accomendations. I was given a walker, wheel chair, small size portable toilet, seat cushion, breathing tool, medicines, cooling machine, four ice packs, few socks and some pads for period time. Angelique also came by to check on me and gave me a bottle of protein powder which was nice.
The first two nights i had to be woke up by night nurse every two or three hours for checking my vital signs and replacing IV fluids. I walked three laps around the hall the second day at night which eliminated my second day movement... I walked one lap the next day.
Food there was average, i was so grateful that my mom bought this bottle of mixed nurtrition at Whole Foods market, i really think this saved me big time. It’s around 50 bucks and looks green.
She also bought grapes, fruit tomatoes, eggs, nuts,apples and others before the surgery and fed me during my stay at the hospital.
I have to thank Erik a thousand times, he and robin came to see me after surgery, greatly boosting my confidence while passing their valuable feedbacks and experiences on me. We talked and texted everyday post surgery, he encouraged me to move my muscles, get up to do exercise and conquered my fears. If it weren’t him (and my mom of course ;)) I wouldn’t be able to keep a fairly relaxing mental state.
To be honest, I had a couple moments of regretting it but all these emotions went away fast with supports from friends and family. * I basically cursed whoever mocked my height in middle school and wished them dead.... it was that bad at some times ( mainly after taking number 2.....)
It turned out I cannot take oxycodone so doctor gave me the substitute, trymdol(don’t know if it’s spelled right). Besides this pain killer I only took Tylenol three days post surgery. It’s not hard for me to sleep at night, just sometimes I woke up in the middle of the night due to stiffness on my entire legs and my mom had to bend them or put ice packs to help me out. My great mom.
I really should have practiced yoga before surgery as I’m having real hard time now to get more flexibility on my right leg and I’m just starting lengthening.....
Title: Re: Femurs with Dr Paley scheduled on March
Post by: forumonly2019 on March 14, 2019, 06:46:22 PM
I tried to upload pics but it showed that the folder is full.
Title: Re: Femurs with Dr Paley scheduled on March
Post by: InFullStryde on March 14, 2019, 07:01:52 PM
Hi Forum! Your journey has began! Congratulations!

The first week is the toughest.  2nd week you start to get a feel for things and usually around week 3, things begin to dramatically improve.   Even your flexibility will start to feel better.   I will be following your diary and rooting you on.

I'm on day 70 of my journey as we type; so feel free to reach out with ANY questions. 

Best Regards,
Title: Re: Femurs with Dr Paley scheduled on March
Post by: makeme6ft on March 14, 2019, 07:04:45 PM
Surgery day - discharged ( March 7th - 11th) :

We arrived at Kimmel outpatient center around 6:10am (scheduled at 6:15am). After checked-in we waited 40 mins till the nurse called my name. (My mom waited outside with suitcases.) In the hall way the nurse checked my band and verify my birthdate and such. Then I went inside, had urine checked, measured height and weight again. I was led to a bed, the nurse enclosed it with a curtain and I was told to take off my cloth to put on hospital dress (open on the back but with few straps). The nurse wrapped my belongings with a bag and put it aside. While I was lying in bed the nurse put warm blanket on my entire body, she even gave me extra one for my cold feet. She checked my blood pressure, temperature and heart rate. Then I waited 20 mins or so to get IV on my left hand. Honestly, it hurt. The nurse marked “x” on both my feet. Doctors or nurses I met before came to say hi to me, it felt great. Then anesthetist Jeff told me epdurial was decided to be replaced with one shoot pain killer which lasts 6-10 hours. He seemed real nice, so as the nurse who put IV on me. Jeff was assigned to another patient so I had a younger anesthetist for my operation. I ended up with general anesthesia as it’s the only option. (They explained it to me so I was cool about it anyways) Then pt came in and draw two smiling face on the top of each femur:) Finally my mom was allowed to accompany me and boy was I relaxed:) the nurse put medical hat on my head, let us chat for a while, in the mean time my mom asked few questions towards the operation. Angelique also came in to check on me. A doctor and front desk staff seemed annoyed that we have two small carry-on and two check-in baggage aside,I explained to them that I had specifically called st. Mary’s medical center ahead of time to ask if we were allowed to bring them while staying at outpatient surgery center. WE GOT PERMISSION AHEAD OF TIME. Their response was literally “ of course you can bring all of them,  if your mom can look after ”. So I was kinda mad with their altitude. Should have recorded the call :( Besides this unpleasant experience, everything went great.
Shortly, it’s surgery time. After I said bye to my mom, I was wheeled to the surgery room, it’s not too big but filled with high-tech facitilies. This nice nurse gently moved me to the operating bed. Another male nurse helped too. Then he injected anesthesia into my IV, in a few seconds I became unconscious. ( didn’t see paley, Robbins or others before I was put into sleep)
I woke up around 1:20pm (not accurate) at the same place where I was hooked up with IV. Mom was there and doctor told me it went great. Felt stiffness on the lower body, pain level 1.5, it’s like after an intense workout. The nurse checked my vital then wheeled me to my room. (It’s not a short distance.) I will upload the picture, the room is quite nice.
The nurse checked my vital, hooked up my IV with antibiotic, glucose and anti-inflammation liquid(can’t remember the name). I rested for one and a half hours, then called the nurse asking for four ice pad as the cooler machine cannot be used today. (will upload pic of it, cool stuff)
The worst experience I had during these days were to put a bed pan under my bottom the first time and to have number 2 every single time. The first time nurse helped me to pee was unberable. He had to push my femur over to place the bed pan under me. I didn’t have much arm strength (there was a support rod over my head) plus I still had anesthesia left inside my body so you can imagine how hard it was for me to move and to pee.... portable toilet was real bad overal, the nurse didn’t get me the small size one until the last day. Regular size’s seat height was too high for me so every time I used it my femurs were squeezed and I had to relied on my left shoulder. My left leg was much better than my right one, don’t know why. Despite the bathroom situation, my pain level was 0-2. I had my IV removed the third day ( should have removed it the second day). The needle caused me so much pain when I used my arm stregnth to do anything. My legs were elevated almost at all time, so I had to ask my mom to bend my knees to make the stiffness go away. I must have asked a hundred times. I didn’t watch much tv or even use cell or chat a lot with my mom as I was too busy for these things: pee, take number 2, sleep, nap, eat, change position including the way to put the cushion under my legs), try to walk, bend knees, do breathing practice, get vita signs checked by nurses, replace ice pack(cooler machine is a mistake, it’s way too cold and heavy), have snacks, ask for juices, be wheeled to hallway for fresh air, do pt (lasty three days) and such. Everything took longer than usual, my mom did more than nurse did cuz I just relied on her:) Generally, day nurse was not as good as night nurse. Speaking of nurses at the hospital, I wrote down a list of names as I think these hardworking heros are worth mentioning: Carolina, alekis, Jenn, all pts(Especially the latter two, really helped me out *and good looking guys..),Andrea, Judith. The last day I met Osiris, paley’s assistant, she gave me essential info about incoming pt, medical details and local accomendations. I was given a walker, wheel chair, small size portable toilet, seat cushion, breathing tool, medicines, cooling machine, four ice packs, few socks and some pads for period time. Angelique also came by to check on me and gave me a bottle of protein powder which was nice.
The first two nights i had to be woke up by night nurse every two or three hours for checking my vital signs and replacing IV fluids. I walked three laps around the hall the second day at night which eliminated my second day movement... I walked one lap the next day.
Food there was average, i was so grateful that my mom bought this bottle of mixed nurtrition at Whole Foods market, i really think this saved me big time. It’s around 50 bucks and looks green.
She also bought grapes, fruit tomatoes, eggs, nuts,apples and others before the surgery and fed me during my stay at the hospital.
I have to thank Erik a thousand times, he and robin came to see me after surgery, greatly boosting my confidence while passing their valuable feedbacks and experiences on me. We talked and texted everyday post surgery, he encouraged me to move my muscles, get up to do exercise and conquered my fears. If it weren’t him (and my mom of course ;)) I wouldn’t be able to keep a fairly relaxing mental state.
To be honest, I had a couple moments of regretting it but all these emotions went away fast with supports from friends and family. * I basically cursed whoever mocked my height in middle school and wished them dead.... it was that bad at some times ( mainly after taking number 2.....)
It turned out I cannot take oxycodone so doctor gave me the substitute, trymdol(don’t know if it’s spelled right). Besides this pain killer I only took Tylenol three days post surgery. It’s not hard for me to sleep at night, just sometimes I woke up in the middle of the night due to stiffness on my entire legs and my mom had to bend them or put ice packs to help me out. My great mom.
I really should have practiced yoga before surgery as I’m having real hard time now to get more flexibility on my right leg and I’m just starting lengthening.....

This was a great read. Your mom's truly a hero.. its a global phenomenon that hospital food is pretty bad. I feel hungry for some grapes now myself...

Also walking two days post op is goat.

Once you start walking ; you'll be able to keep doing it everyday and this is the best physiotherapy in the world

Speaking of, do you take Tramadol to walk? Cuz that can make things a lot harder
Title: Re: Femurs with Dr Paley scheduled on March
Post by: forumonly2019 on March 14, 2019, 07:07:25 PM
Hi thank you!
I just made the first week and I do feel much better now:) omg you don’t know how thrilled I’m now knowing that it gets much better around week 3.
Keep up your great journey  and I hope everything goes smooth on you as you are almost finished!!

Thanks again ;D
Title: Re: Femurs with Dr Paley scheduled on March
Post by: forumonly2019 on March 14, 2019, 07:12:41 PM
Hi! Thank you for your support ;D
I couldn’t do it without my mom for sure:) Im trying to walk as much as possible but pt session sometimes makes me wanna rest a little haha...
Yeh I’m taking Tramadol before each pt session as it’s the only strong painkiller my body can tolerate (doctor only gave me this..) other than that I only have Tylenol.
Title: Re: Femurs with Dr Paley scheduled on March
Post by: forumonly2019 on March 14, 2019, 07:34:17 PM
March 12th to 14th:

Pain level went up when I tried to use the portable toilet again... otherwise not too much pain even I stopped taking strong pain killers. Just really stiff. Had to ask my mom to bend my legs over my chests frequently. My bottom hurt too and it has purple bruise around the incision. Didn’t really walk too much, went to Foodtown market once. Completely ditched cooling machine. My mom washed my hair and used hot wet towel to wipe my tibia and private parts. Still having odd walking gait (ass points out). Getting on bed hurt. Emotional meltdown three times. Little progress everyday. Had first, second, third pt with Mike, just great, I will schedule all my pt with him.(professional and so cute, he is my partly motivation to go to pt every day, not kidding ;D)
Today, the 14th, I had my wound checked and the nurse removed my bandage, showed me how to work the lengthening machine. It can tolerate 6.5mm or cm error (didn’t really dig into it). I actually felt the nail rotated in my right femur when legthening and he said it’s normal.
Omg I already feel much more stiffness on my legs now and I have only been lengthened one time now...

*little suggestion: don’t get your body over heated, always have the air flow, keep ac on, if it’s getting hot the wounds hurt so bad.
Title: Re: Femurs with Dr Paley scheduled on March
Post by: makeme6ft on March 14, 2019, 08:18:22 PM
March 12th to 14th:

Pain level went up when I tried to use the portable toilet again... otherwise not too much pain even I stopped taking strong pain killers. Just really stiff. Had to ask my mom to bend my legs over my chests frequently. My bottom hurt too and it has purple bruise around the incision. Didn’t really walk too much, went to Foodtown market once. Completely ditched cooling machine. My mom washed my hair and used hot wet towel to wipe my tibia and private parts. Still having odd walking gait (ass points out). Getting on bed hurt. Emotional meltdown three times. Little progress everyday. Had first, second, third pt with Mike Thompson, just great, I will schedule all my pt with him.(professional and so cute, he is my partly motivation to go to pt every day, not kidding ;D)
Today, the 14th, I had my wound checked and the nurse removed my bandage, showed me how to work the lengthening machine. It can tolerate 6.5mm or cm error (didn’t really dig into it). I actually felt the nail rotated in my right femur when legthening and he said it’s normal.
Omg I already feel much more stiffness on my legs now and I have only been lengthened one time now...

*little suggestion: don’t get your body over heated, always have the air flow, keep ac on, if it’s getting hot the wounds hurt so bad.

Stopping strong pain killer is a huge favor for your liver.

The actual action of doing the lengthening (using the machine) is supposed to be painless or so they say, Ive never used the lengthening machine but for me using the manual key for my frames is also painless. This could have pained you a lot since its your first time and your body is still adapting to the nails

Its weird you say your PTs full name but its cool as long as you encouraged to do PT

Overall keep strong, LL is a huge mental battle as it is physical. Just know it wont last forever and you will enjoy its benefits one day looking back to these times as a far memory. It would be hard to even recall pain then.
Also props to you for doing femurs, theyre always much harder than tibia. Dr. Paley and Stryde nails are the best choices in the entire world for this so Im sure youll be looked after well.
Title: Re: Femurs with Dr Paley scheduled on March
Post by: forumonly2019 on March 14, 2019, 08:32:37 PM
Yeh I tend to have less pain killer overall...
Legenthing wasn’t painful just little odd as there was something in my femur moved haha. I actually have the 11.5 diameter nail inserted, paley increased the size during operation.
I mentioned mike’s last name cuz I rarely bothered to remember others’, already deleted.
Thanks for your encouragement, I hope I will go through it and achieve my beautiful 8 cm on femurs:)
Title: Re: Femurs with Dr Paley scheduled on March
Post by: forumonly2019 on March 14, 2019, 08:40:13 PM
I have to take back my words now... I’m in pain :'( mostly stiffness but also comes with little to moderate pain.

Update: pain is gone now, odd, didn’t take any pill
Title: Re: Femurs with Dr Paley scheduled on March
Post by: makeme6ft on March 14, 2019, 09:21:00 PM
I have to take back my words now... I’m in pain :'( mostly stiffness but also comes with little to moderate pain.

Update: pain is gone now, odd, didn’t take any pill

Very normal

The stiffness will eventually go the more mobile you are

Keep strong! pain kills when it happens...
Title: Re: Femurs with Dr Paley scheduled on March
Post by: forumonly2019 on March 15, 2019, 12:33:59 AM
I haven’t done any stretching with my mom today so am about to do it now.
I will have one fourth of oxycodone tmrw before pt and see how it goes, only taking medium pain killer doesn’t get me stretch to the furthest point.
Title: Re: Femurs with Dr Paley scheduled on March
Post by: PAGrb490 on March 15, 2019, 03:19:30 AM
Good luck with everything!

I am so very proud of you for doing so. I am a female as well, so very much looking forward to hearing about your experience.

I am actually a little bit surprised That Paley is aiming 8 cm with you unlike other (mostly male , of course)patients who wrote here. Did he explain you you that this is because you a woman and your soft tissues will allow for such large height increase? I hope that the answer cause I am planning to by femurs this year as well

With huge respect
Title: Re: Femurs with Dr Paley scheduled on March
Post by: ok on March 15, 2019, 05:01:35 AM
Please go to imgur.com and upload any pictures. Then paste the link here.

Thanks for the updates, it is very interesting to read.
Title: Re: Femurs with Dr Paley scheduled on March
Post by: forumonly2019 on March 15, 2019, 12:31:24 PM
Haha it’s one of the main reasons I posted here, for incoming female LLers:)
Paley didn’t promise me that I can get full 8 cm, just told me the percentage of people achieving it.
(Actually Rozbruch said I can get 8cm, but I didn’t ask how and why)
My right leg now can only bend 85 degrees which is really upsetting, someone else at this stage had 135 degrees...

I really recommend you consistently practice your harmstring, or just muscles on your femurs in general, it will help your lengthening and pt so so much :D

Thank you  ;)
Title: Re: Femurs with Dr Paley scheduled on March
Post by: forumonly2019 on March 15, 2019, 12:32:42 PM
Ok I will figure it out, thanks for the support:)
Title: Re: Femurs with Dr Paley scheduled on March
Post by: InFullStryde on March 15, 2019, 12:41:10 PM
Hi forumonly2019,

When you say that your right leg can only bend 85 degrees...which position are you referring to?
Title: Re: Femurs with Dr Paley scheduled on March
Post by: forumonly2019 on March 15, 2019, 12:45:00 PM
When I lay in bed on my stomach, had my right leg raise up and bend over.
It was actually more like a 50 degree.... 85 was like i die for a sec
Title: Re: Femurs with Dr Paley scheduled on March
Post by: InFullStryde on March 15, 2019, 01:16:41 PM
When I lay in bed on my stomach, had my right leg raise up and bend over.
It was actually more like a 50 degree.... 85 was like i die for a sec

LOL @ "like i die for a sec".   I relate to that. I have died on several occasions during this CLL process, myself.  You're going to be just fine.   I was the same as you at this point at about 85 degree/90.  You'll be just fine. We'll stand by for more updates.  You're doing great.
Title: Re: Femurs with Dr Paley scheduled on March
Post by: forumonly2019 on March 15, 2019, 03:36:46 PM
Just done pt today, great as usual. He measured my left leg can bend 97 degrees while right one with only 88...  Thank you fullstryde, love having you here, I screamed and cried a little during today’s pt so I just “died” serveral more times now haha.
when mike asked me to hold for a stretching position for 30 secs, it hurt so so bad. But right after releasing my leg, the pain was completely gone. Ahh, it’s just how stretching is I guess  :'(
Title: Re: Femurs with Dr Paley scheduled on March
Post by: forumonly2019 on March 15, 2019, 03:41:38 PM
Little update on oxycodone: I actually can take it if I split it into half and have them half hour apart.
Title: Re: Femurs with Dr Paley scheduled on March
Post by: InFullStryde on March 15, 2019, 03:50:42 PM
Little update on oxycodone: I actually can take it if I split it into half and have them half hour apart.

Outstanding! The pain killer will get you through this initial "post-surgical" time. Most the pain you're experience is only natural due to the type of surgery you had.  Keep going good with those stretches and you'll be great.  Here are a few CLL complications that pop up and it's worth asking Mike about to understand how his stretching will prevent this for you...

1) "Duck Ass" - How to keep it away and get ride of it once it comes (if it comes)
2) "Keep my Legs straight" - As you approach 4cm or 5cm..your legs want to bend on their own...
3) "Wide Legs" - Meaning it gets harder to keep your legs together when standing straight up...

These are the big 3 to stay proactive on and to keep Mike on his "toes"....in helping you prevent.

Forum, I'd love to know what stretches they make you do at Paley's.  I'm with Dr. M, and comparing notes.

You're doing great!  Looking forward to more updates.

Title: Re: Femurs with Dr Paley scheduled on March
Post by: forumonly2019 on March 15, 2019, 09:04:58 PM
Thank you so much for those valuable notes, will def. ask Mike next Monday for each of them ;D
Mike teaches me new practices everyday.
Sit on the pt table, Spread the legs, Bend over and try to reach the lowest possible point, use a strap to go around one feet and pull, elbow on the table.
Lay on stomach, he bend my leg over one at a time.
Lay on pt table, have a roll under my knee, try to kick up.
Some electric shock thing on my femurs that cannot be done by myself.
Sit near the edge of the pt table with leg naturally falling down, try to bend one leg at a time.
There are more, but these pretty much sums up the idea of stretching here.
These positions have to be used carefullly because sometimes you need to move forward or backward a bit and it makes a big difference, other times the place he put pressure on and hold on matters a lot as well, so it’s hard to picture it if not seeing it in person.
Title: Re: Femurs with Dr Paley scheduled on March
Post by: forumonly2019 on March 15, 2019, 09:31:39 PM
Here is the link:
https://imgur.com/gallery/wydzEPT

The pic I took of dinner was the highest level they served me at the hospital, not every meal like that, but overall I would give a 7.8
They even offered us a double quantity of food the last night before I got discharged. Nice:)

Just update few pics of the shuttle offered by homewood suite by Hilton, it’s so cool that it can pick me up while I sit on the wheelchair, basically I don’t have to move to be picked up and dropped off.
Title: Re: Femurs with Dr Paley scheduled on March
Post by: forumonly2019 on March 15, 2019, 09:37:17 PM
Plus, Angelique is quite nice to deal with, if you have some small favors to ask, she can help you out.
Title: Re: Femurs with Dr Paley scheduled on March
Post by: InFullStryde on March 16, 2019, 02:11:04 AM
Awesome! You're in good hands over there.  Sounds like its going pretty good so far.
Title: Re: Femurs with Dr Paley scheduled on March
Post by: forumonly2019 on March 16, 2019, 08:48:24 PM
Im doing alright, mike expects me to be able to bend 30 degrees more by next Monday and I’m truly motivated(questioning myself) by that....
I’m now 2mm taller! Took a shower today which is problobly a bad idea cuz Im getting reddish around few incisions, don’t know why that nurse told me to do so.
My right leg is getting real tight, can’t bend over 80 degrees now... will work on it
I got 10 hours sleep last night, feeling bit slow today, maybe I should start to get up around 8 am even on weekends... was gonna sleep around 10:30pm but I watched new episodes of modern family, young Sheldon and the Big Bang... pretty happy though
I’m kinda worried that my legs have been consolidated cuz I don’t really feel like they are broken apart, maybe just my thought
My feet have been swollen since last night, it’s around my ankle as well, called Paley Institute today and was told to buy a pair of compression socks and wear them in the day time. Also I still need to place ice packs near my femurs at night.
*just remembered I should have taken silicon 5 times a day... only started yesterday
Title: Re: Femurs with Dr Paley scheduled on March
Post by: InFullStryde on March 16, 2019, 10:35:27 PM
Im doing alright, mike expects me to be able to bend 30 degrees more by next Monday and I’m truly motivated(questioning myself) by that....
I’m now 2mm taller! Took a shower today which is problobly a bad idea cuz Im getting reddish around few incisions, don’t know why that nurse told me to do so.
My right leg is getting real tight, can’t bend over 80 degrees now... will work on it
I got 10 hours sleep last night, feeling bit slow today, maybe I should start to get up around 8 am even on weekends... was gonna sleep around 10:30pm but I watched new episodes of modern family, young Sheldon and the Big Bang... pretty happy though
I’m kinda worried that my legs have been consolidated cuz I don’t really feel like they are broken apart, maybe just my thought
My feet have been swollen since last night, it’s around my ankle as well, called Paley Institute today and was told to buy a pair of compression socks and wear them in the day time. Also I still need to place ice packs near my femurs at night.
*just remembered I should have taken silicon 5 times a day... only started yesterday

You'll notice that your flexibility begins to increase after the surgical effects begin to wear off.  Enjoy the sleep! Most of us CLL'ers complain (including myself) on how we can only sleep 2 - 4 hours a night, max.  If sleeping is coming natural to you; really treasure that.You're not consolidated! Have you tried walking on the nails at all?
Title: Re: Femurs with Dr Paley scheduled on March
Post by: forumonly2019 on March 17, 2019, 12:09:54 AM
Good to know that:) I can sleep whenever I want to and normally it’s 10 hours sleep if it’s not pt day as mine is always scheduled at 8am,  just sometimes I gotta get up and pee...
I walk a lot everyday and it could be the reason for my swollen feet.
I went to target today to get a comfy pillow, compression sock, a roll and some other daily stuff.

* I only took one actexxxxxx (can’t remember the name, it’s the same as Tylenol) pill this morning for shower. I do feel pain actually, but somehow I can ignore it as it’s only at 2-3 level.
Title: Re: Femurs with Dr Paley scheduled on March
Post by: InFullStryde on March 17, 2019, 12:20:15 AM
Are you using the walker, crutches or are you just walking around like nothing ever happened to you? lol

Title: Re: Femurs with Dr Paley scheduled on March
Post by: forumonly2019 on March 17, 2019, 12:27:26 AM
I have to use the walker, going to buy a protection glove for my poor hands,  still have duck ass but better than first week. Actually I think my gait is incorrect so it’s the first thing I gotta ask mike next Monday.

*i also went to Foodtown today so if anyone saw a girl with a walker yeah that’s me ;)
*forgot to have the silicon again.... have to take twice now
*i think the reason that I’m able to sleep well is taking vitamin D 10000 everyday at 9am.
*after my advice, my mother took vitamin D 5000 per day(the day I got it from gardens pharmacy) She said she can be really sleepy around 9-10pm and she began to have deep sleeping, only side effect is that sometimes she feels it’s harder to get up in the morning...
Title: Re: Femurs with Dr Paley scheduled on March
Post by: InFullStryde on March 17, 2019, 12:38:48 AM
Okay, for Duck Ass.... Mike will talk to you about it; and from what I understand it is because of the post surgery, weakened glutes, and then the tight quads and hip flexors.  The walker is great for safely building back those leg muscles. 

Here is a good video to attack  Anterior Pelvic Tilt (or Duck ass!)...it will go away; so its nothing to worry about.   Pick out a few of these...and here is another easy way to lose it...when you're in resting mode...flex your butt and your abs. I'm curious to know what Mike says to eliminate the duck ass! I'm in need of some tips from him.   I have the APT....working on it...

Video 1:

https://www.youtube.com/watch?v=T69N5A0GzrI&t=1039s

Video 2:

https://www.youtube.com/watch?v=JGLQS_ArIMY&t=171s

Video 3: Here is how you should sit....while you have the Duck Ass....APT

https://www.youtube.com/watch?v=FtrYlYqX0Tg

Title: Re: Femurs with Dr Paley scheduled on March
Post by: forumonly2019 on March 17, 2019, 12:44:31 AM
Thanks for these explanations and videos :D
I will watch them later and try to correct my posture.
He actually mentioned that I should walk like before surgery, anyways will let you know.
Title: Re: Femurs with Dr Paley scheduled on March
Post by: wannagrowtaller on March 17, 2019, 09:37:44 AM
In the week of the surgery, how did you change your clothes, or take a shower, or make number 2? Did you need help for that? How do you evaluate your autonomy to day to day ordinary activities?
Title: Re: Femurs with Dr Paley scheduled on March
Post by: forumonly2019 on March 17, 2019, 01:27:20 PM
I only had hospital gown on me until the last day( got discharged and got to put on my own cloth, a loose t shirt and a short). I changed the gown once cuz it got dirty from stuff, with the help of my mom and the nurse. The gown itself is kinda pretty, with moon and star on it, looking bluish grey I remember. Actually you wouldn’t want to put on your own cloth for the first few days cuz the material of the gown is breathable and it’s light. You don’t ever want to feel hot in these days...)
I didn’t take a shower until yesterday. The first time my mom washed my hair was on the discharged day, I lay on the wheelchair (you can adjust its back angle) so the water wouldn’t flow down. ( but it did a little and I panicked)
Number 2, omg, at the beginning I didn’t have much arm strength so I couldn’t utilize the supporting rod over my head, I had to push the bed using my hands at the same time my mother and nurse lifted my legs and pulling me to the edge of the bed( gently, or else my legs hurt so bad). Then I had to stand up using the walker with my mom pushing my back and lifting me up. Sitting on the portal toilet was horrible as well as getting up after finished.
If I am to evaluate my mobility during the hospital stay, for the  first two days I would say close to zero, my mother even  fed me as it was unpleasant to eat by my self and I didnt wipe my own bottom until March 13th or so... (I could have done it earlier, maybe on the 12th)
As soon as the muscle on my arms started to gain strength, i could lift my self up a bit so it was easier to get off the bed and move to the sitting or laying positions i like. Still couldn’t move my legs on my own though.
Title: Re: Femurs with Dr Paley scheduled on March
Post by: forumonly2019 on March 17, 2019, 02:11:08 PM
Just uploaded the gown pic, I edited it cuz the original pic is a selfie I took with my mom. But you can get the idea of its look.
Title: Re: Femurs with Dr Paley scheduled on March
Post by: forumonly2019 on March 17, 2019, 02:44:10 PM
Got a mean comment on the uploaded gown, gonna shut down imgur, I don’t take any insult.
Title: Re: Femurs with Dr Paley scheduled on March
Post by: InFullStryde on March 17, 2019, 04:28:49 PM
Awe, that is too bad. Some people have no class.  Was it someone from the forum? or imjur?
Title: Re: Femurs with Dr Paley scheduled on March
Post by: forumonly2019 on March 17, 2019, 07:46:57 PM
Think it was someone from the forum which pissed me off >:(
Anyhow, I did three hours stretching today with my wonderful mother, and I’m now 3 mm taller!
Title: Re: Femurs with Dr Paley scheduled on March
Post by: wannagrowtaller on March 17, 2019, 07:49:21 PM
Think it was someone from the forum which pissed me off >:(
Too bad.
Anyhow, I did three hours stretching today with my wonderful mother, and I’m now 3 mm taller!
Congratulations!
Title: Re: Femurs with Dr Paley scheduled on March
Post by: forumonly2019 on March 17, 2019, 07:51:19 PM
Thanks!  ;D
Title: Re: Femurs with Dr Paley scheduled on March
Post by: forumonly2019 on March 18, 2019, 01:52:57 AM
There was a sudden movement happened inside my right femur twice today (also comes with the sound) and I’m now worried if the rod in my right leg didnt align well (maybe it’s the reason my right leg contains much more fluid and has less flexibility, before the surgery my legs are the same regarding range of motion.) Now my right femur hurts. There is something wrong right above my knee as well.
Already emailed Paley and Robbins, waiting for their responses.
Title: Re: Femurs with Dr Paley scheduled on March
Post by: forumonly2019 on March 18, 2019, 02:30:18 AM
Update: Paley responded real fast, asking me to go to his clinic tomorrow and get a x-ray.
Glad:)
Title: Re: Femurs with Dr Paley scheduled on March
Post by: InFullStryde on March 18, 2019, 02:37:58 AM
Update: Paley responded real fast, asking me to go to his clinic tomorrow and get a x-ray.
Glad:)

Is there any redness or swelling? What did the sound, "sound" like? 

Everything is probably okay; but glad Paley is on top of it. Keep us posted.
Title: Re: Femurs with Dr Paley scheduled on March
Post by: forumonly2019 on March 18, 2019, 03:01:32 AM
No redness but I do feel “inside”(near bone) hurts. It wasn’t sharp, it’s more like a dull, dislocation sound.
I hope it’s nothing, paley’s quick response reduced my fear. I will let you know fullstryde, thanks for caring about me:)
Title: Re: Femurs with Dr Paley scheduled on March
Post by: wannagrowtaller on March 18, 2019, 07:27:54 PM
Did you get your x ray? How are you doing? I hope you are fine.
Title: Re: Femurs with Dr Paley scheduled on March
Post by: forumonly2019 on March 18, 2019, 08:45:18 PM
After consideration I canceled the x-ray arrangement since the sound was from my knee not from femur and the cause to that was probably the intensive exercise I have done in the past few days.(if I’m guessing this wrong, then I’m screwed...)
I still feel something wrong with my knee area and it could be that my muscle there was twisted, my mom will put some heat on it tonight and see how it goes:)
Thanks for asking   ;D
Btw, mike today measured my knees’ bending angles again, they are 102 and 90.
Title: Re: Femurs with Dr Paley scheduled on March
Post by: InFullStryde on March 18, 2019, 09:41:21 PM
After consideration I canceled the x-ray arrangement since the sound was from my knee not from femur and the cause to that was probably the intensive exercise I have done in the past few days.(if I’m guessing this wrong, then I’m screwed...)
I still feel something wrong with my knee area and it could be that my muscle there was twisted, my mom will put some heat on it tonight and see how it goes:)
Thanks for asking   ;D
Btw, mike today measured my knees’ bending angles again, they are 102 and 90.

Yes - I'm sure all is just fine.  It's one of those strange CLL things.  By the way, what exercise were you doing before you heard the noise?
Title: Re: Femurs with Dr Paley scheduled on March
Post by: forumonly2019 on March 18, 2019, 10:01:00 PM
Didn’t do any exercise when I heard the the noise...
But hours before that I did some exercise I learned from pt, just general ones like bending the knees.
Title: Re: Femurs with Dr Paley scheduled on March
Post by: forumonly2019 on March 19, 2019, 05:38:20 PM
I put ice packs near my femur for an hour last night then my mom did two hours message on my legs. I’m all good now:)
In terms of my gait, mike said i need to keep my feet closer and walk long strides. I told him that I felt tight on my femurs yesterday, he said I just need to keep bending my knees and do more exercises at home.
He also helped me with marking these two lengthening spots after tearing off the plastic cover, as well as giving me four pads of cleaning products to erase the dark things on my legs. (Doctors put some chemical protection on my legs during operation) mike also lifted me up from this rolling stool I sat on after pt cuz I might fall down if I tried to get up by myself.
So great! Later we chatted with a stylish lady for like 5 mins, she seemed real nice, complimenting my mom’s top and talked about her experience when traveling to my country back in 1980s:)
I really suggest to have ice packs right after pt, it makes a whole world difference.
* heard the sound three more times...
Title: Re: Femurs with Dr Paley scheduled on March
Post by: Cas on March 19, 2019, 08:45:44 PM
I am glad you are doing good now forumonly. I am have been reading this diary and I enjoy reading the updates and progress. It's so encouraging!
Title: Re: Femurs with Dr Paley scheduled on March
Post by: wannagrowtaller on March 19, 2019, 09:23:54 PM
I would do the x ray...
Title: Re: Femurs with Dr Paley scheduled on March
Post by: forumonly2019 on March 19, 2019, 09:27:50 PM
Haha thank you  ;) I’m just trying to write a concrete “report” of this process, glad you like it:)
Title: Re: Femurs with Dr Paley scheduled on March
Post by: forumonly2019 on March 19, 2019, 09:30:56 PM
My first official post surgery x-ray is scheduled on 29th this month, so it’s like 10 days away, my mom talked me out of that decision cuz she worried about the radiation...
Title: Re: Femurs with Dr Paley scheduled on March
Post by: BeYourBest on March 19, 2019, 10:30:52 PM
Hey Forumonly2019, glad to see you're doing great. I've been keeping up with your diary - great stuff!

Hope your journey is as smooth as possible!

 
Title: Re: Femurs with Dr Paley scheduled on March
Post by: forumonly2019 on March 20, 2019, 12:30:15 AM
Thank you for your support!  ;D
Title: Re: Femurs with Dr Paley scheduled on March
Post by: makeme6ft on March 21, 2019, 11:25:00 PM
My first official post surgery x-ray is scheduled on 29th this month, so it’s like 10 days away, my mom talked me out of that decision cuz she worried about the radiation...

Same thing happened to me just lol. I was gonna do my xray per week then I changed it to 10 days but I basically ended up doing my xray every 20 days cuz my mom convinced me radiation from the xrays is serious business

Title: Re: Femurs with Dr Paley scheduled on March
Post by: InFullStryde on April 08, 2019, 09:36:19 PM
How is it going Forums Only? Wanted to check up on how things are progressing... Hope all is going smooth enough.
Title: Re: Femurs with Dr Paley scheduled on March
Post by: wannagrowtaller on April 08, 2019, 10:08:42 PM
My first official post surgery x-ray is scheduled on 29th this month, so it’s like 10 days away, my mom talked me out of that decision cuz she worried about the radiation...
Did you do the x ray?
Title: Re: Femurs with Dr Paley scheduled on March
Post by: BeYourBest on April 09, 2019, 12:22:46 PM
Long time, Forumonly.

How is your progress?

I hope all is well.
Title: Re: Femurs with Dr Paley scheduled on March
Post by: InFullStryde on April 10, 2019, 01:23:49 AM
She is likely pretty busy LL'n.  :P  One thing about this process is woah...it takes a lot out of you and so many surprises along the way.  Looking forward to hearing an update from ForumOnly, soon.
Title: Re: Femurs with Dr Paley scheduled on March
Post by: BeYourBest on April 10, 2019, 02:25:17 PM
She is likely pretty busy LL'n.  :P  One thing about this process is woah...it takes a lot out of you and so many surprises along the way.  Looking forward to hearing an update from ForumOnly, soon.

That is fair. I hope everything is well!