Limb Lengthening Forum
Limb Lengthening Surgery => Limb Lengthening Patients Experiences => Topic started by: Cooper on June 03, 2014, 12:58:46 AM
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I am scheduled to go surgery tomorrow with Dr. Paley. I originally planned to go with Dr. Birkholtz in South Africa but due to my work schedule conflict I could not make the trip. I still think that would have been financially wise.
I am here in west palm beach staying in hotel with a friend. Less than 12 hours to go and very nervous as the clock is ticking much faster than before. Having a strange feeling, excited, nervous and come to think life will never be same from tomorrow on. Hope this bring the happiness I have been waiting for last 2 years.
I will need all your support, pray and wishes during this difficult journey. I will try to keep you inform but most of you already know what to expect as this is not the first diary from the Dr.Paley. But nonetheless I will try to answer any question.
Will update you after the surgery...stay tune!
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I am going to try and start my own journey with Paley in July, hopefully Ill meet you! Good luck!
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Another Dr. Paley patient experience, excellent! Lots of luck, Cooper. You're fortunate to be getting your surgery performed by one of the best in the field. Can't wait for your updates :D
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Good luck mate, report back ;D
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Enjoy the last few hours of your legs feeling good, for the next few months. :P
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Good Luck, Cooper!!! :)
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All the best buddy!
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All the best bro.
Looks we're forming a Paley ward in here.
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Good luck cooper. Always followed your postings as you were one of the people that made good detailed comments and seemed genuinely concerned about others. Very happy for you that you followed through with your dreams, fortune favors the brave!
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I am alive and doing well ;D
The surgery went well. I am on my room and watching French open tennis on my iPad. I was working till late yesterday. Finally feel I am having some time off. No pain and I am on epidural. I feel no different than preop surgery. I know this temporary. I can bend my left knee but cannot move the right one yet.
The PT begins tomorrow. Today is the day to rest.
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Thank you all for your wishes. It really means lot to me.
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Watching game and enjoying dinner...ate all the foods that was on the plate.
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I am feeling better so far....epidural is definitely keeping the pain in control.
Working on my first day. Send couple emails and take care of few business stuff.
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How's the food taste? I hope it's better than your typical hospital food.
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That's great you did it. When the pain kicks in let's hope it won't be bad at all. :)
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Thanks Galaxy.
The food was OK better than other US hospital.
I puke whatever I ate felt terrible for an hour. I am back normal now.
Nurse are super nice. I wanted to have a soup and she came back with can of chicken soup. She is warming up while I am typing.
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It's amazing that you're simultaneously recovering from surgery and taking care of business matters :o
Did you have general anaesthesia?
I believe that Paley suggested ITB release, did you undergo this and did he perform any other release on you?
Stay strong bro :)
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Yes general anesthesia. ITB and other soft tissue release.
Day 2- no pain. Epidural keeping control. The nurses here recommends epidural to be top on pain rather than chasing pain. Once you are in pain it will be some what difficult to manage it.
Believe or not I worked 8 hours yesterday. Get bored watching tv and movies all the time. Sleeping is not so great on and off. Had a breakfast, pancakes, eggs, coffee and juice. Eating well and took some stool softener to ease the constipation. No bowl movement so far.
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Day 3
0 pain. Slept well. Nurses comes every now and then for vitals and cannot have continuous sleep. After the PT yesterday my body get really tired. They transfer me to wheel chair. And took four steps on walker and was painful. I have been running fever but now gone.
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Bro. Can you write your profile on this thread, including your height, desired increase in height, age, etc. if possible?
Thanks.
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done.
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One think I liked here is they do well on pain management. Nurses here wants this procedure a pleasure experience not a painful. The epidural and catheter will be out but other medication are on cue for pain control. I am feeling great on day 3. The wound is healing well and I can feel it.
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Sounds like you're doing great man. I will definitely be watching your story, as I am hoping to do Precice 2 on femurs soon, myself.
Best of luck to you, bro.
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So your goals have increased since deciding to go with Dr Paley, would have been 6 had you proceeded with Dr Birkholtz if I remember correctly. Sounds like you're doing well, please continue updating us when you can. Regarding the catheter, do they put that on when you're out of it during the surgery or when you are awake?
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Day 4.
Pain is under control. On the third day I did not take pain killer medicine after 9PM till all the way 9AM for 12 hours. I did fine and was very much surprise. The most pain was probably at 2 at tops. I took Percocet right before PT around 9.
Epidural was taken out on Day 3, post day 2. I was bit scarred thought pain will spike but that did not change much. They took out the catheter after 30 minutes, it was painless. May be 0-1 pain level.
Catheter was inserted probably at OR. I had it when I wake up after the surgery.
Yesterday I did my first poop. It was terrible, probably the painful experience so far on my LL journey. The whole ordeal took about 30-45 minutes. I had Rtaller version of alien poop. I had very difficult time, drank couple glass of water in anticipation that will press. After 30 minutes of sitting I called nurse and ask if they can give me any medicine. They recommend hot water. I was already sweating from my forehead to chest. Sweat was dripping from my body almost from everywhere. I was feeling super hot. I said YES I will take anything that helps. That seemed to help a lot. Remember guys HOT WATER.
Then same time my right foot start going numb. I did not want to get up without finishing the task. I could not think of doing this over again. It is now or never. Despite numbness I tried and still the foreign object would not exit out of the system. I applied my hand to grab that thing and pull it out. I read that version on Rtaller and I followed his path. That helped out, reading patient diaries will go on distance. After few minutes it started loosening up and I felt 1000% better. I was glad that hum was over. Big relief...
My body is very sensitive to drugs which helps keep the pain under control. I have masculine legs that might have helped seduce pain. I am athletic and been playing tennis about 15-20 hours a week. I did not do any stretch, Dr. Paley did not insist. The pain is not an issue for me at all. So far have been pleasant experience. Because of sensitivity I might have experience severe contamination.
I liked here at the hospital, staff are very nice and they are like family/friends. Not looking forward to going to hotel. Dr. Paley and his staff paid visit yesterday. Around 10 people were in the group, large group, was like presidential visitation. I will start lengthening from Monday.
I have been working 5-6 hours every day since the surgery day. My legs are weak and cannot stand up easily, need support to get up, and walking is by far the biggest challenge. My wounds are healing on each passing day. Hope to get back some strength in next few days. I will love to walk on walker at least go to bathroom on my own. That is my goal in coming days.
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Hey Cooper, it's been almost a week since your surgery (or has it already, lol)...how are you doing? I hope you're doing great!
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I am doing really well. I can transfer to and from wheel chair to walker. That was big relief. I was not able to get up but were able to sit down. From today that hum is over. I am in and out by myself. I went to bathroom and refresh on my own. Had a first PT session today and they think I am doing great.
I am sitting on hotel office chair and don't even feel I have rod inside my body. Very close to normal feeling. It's insane. Making substantial progress everyday. I can work fine, eat well but cannot walk far on walker. By next week I think I will be in much better shape.
I did my first turn today. I already did 3 x .25 and one more to go today which I will do after dinner. The lengthening was painless, did not feel a damn thing. On the last one felt little sensation and that was it. I am hoping the rod is lengthening fine and THAT IS MY BIGGEST CONCERN now. My x-ray will be in two weeks from now and only can confirm at that time. Other than that all is well. I am enjoying so far.
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Hey cooper, it seems like everything is going really well with your LL! Thats great! Do you mind if I ask why you had LL? I personally want it because I am hoping it will help with my confidence with girls and height dysphoria. We are around the same height 5'3ish 5'4ish. I am curious because I want to know how much more confident you are after and if you still feel short or if you finally feel good and normal. I am planning on doing LL with paley soon but I am worried that since I will still only be around 5'7ish after that I still wont be happy with myself. Thanks Cooper and hope to hear from you soon!
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Nice going bro.
When do you decide if it's 7 or 8cm?
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My height always played a larger role on my social skills and confidence. I wish I could have done this when I was 19. I hope to overcome the height neurosis and gain my confidence. Hope I will achieve both.
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After talking with Dr. Paley, it seems possible to get 7-8cm. They asked my goal on my consultation. I told them I want to go max as long as my body allows. We will see how that goes. So far so good...3mm as of last night.
Today is exactly post 7 days op. I am seeing great progress yesterday. I was able to put my sox on by myself. Last night I was able to flip on my bed. I sleep few hours on my stomach. Every day I am picking something new. I do get stiffness and weird pain (level 3-4) right after lengthening. Lately I feel electrical tingle on my left knees through upward muscle when I walk. It's on and off. It only happen after I started lengthening.
Everything is going well so far. Legs are gaining strength slowly and PT is definitely helping. I am looking forward to going at the center everyday. They ask to do two times PT at home and I am mostly doing 4 times. One at the center and one later in the evening and two interval at night. I have a friend who helps out on shopping, lengthening, buying lunch and dinner. Mentally I am doing well because of him. It will be tough to be alone. Possibly that is the main reason I am sailing so far.
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Great start so far and good to know your body can handle that amount according to Dr Paley. Btw, how much contact will you have with him throughout your lengthening phase? Are you able to call him any time you wish?
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Congratulations Cooper! How are you doing these days? I am new on this forum but have been reading up about LL for a while now. I am keen on getting this surgery done in the US. I think Paley is my first choice. I'm in my 30s and I'm a little nervous about how my body would handle the surgery. What are your thoughts?
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I am about 2.3cm, two millimeters shy away from inch. I will hit one inch in two days. My journey has been incredibly pain free. I never had pain above 4 level, considered very lucky on that regard. I normally take oxycodone (generic Percocet) 5mg twice a day. I probably could do without it but I am working full time and any inconvenience and discomfort hinders my work performance.
I break down this journey in 2 phases. The first one lengthening and second one consolidation. One third down and two third to go. If I keep my current pace I will be done in August 26th. I am planning to stay here through out. My friend who is helping me out is leaving in July 15th and I will alone. I am talking few guys to come out and help me here see how that goes. If not than I will try to stay strong and fight the battle myself next 43 days.
I have been working full time since the week of surgery. Fulltime meaning 40 hours a week. Some day I work 10 while other 3 or 4. My days goes really fast because I keep myself very busy with work, PT, hot water therapy at bath tub and stretching twice a day at hotel.
I took my first x-ray last week and distraction was exactly as expected 1.6cm from 16 days of lengthening. I will post it later.
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Great start so far and good to know your body can handle that amount according to Dr Paley. Btw, how much contact will you have with him throughout your lengthening phase? Are you able to call him any time you wish?
I have not had much contact with Dr. Paley but I can email him anytime and he responds very quickly. Usually he sees the patient every two weeks when the x-ray is done. On my last x-ray he was out on vacation and I saw his assistant.
Not sure about calling him anytime, I do not have his private phone number. His time is very demanding, may spent half the time at operating theatre. But if there is need and concerning thing he can be reached. His practice is very well structured. The PT looks at my scars everyday to make sure they are healed and ask plenty questions about my well being, pain level and discomfort.
Few weeks ago I was concerned that my right leg might have infected. I had itchy feeling inside my leg and the PT sent me to talk to physician assistant right way and they looked at it and determined it is nothing but just spams. Advice to drink plenty of water and fiber.
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Congratulations Cooper! How are you doing these days? I am new on this forum but have been reading up about LL for a while now. I am keen on getting this surgery done in the US. I think Paley is my first choice. I'm in my 30s and I'm a little nervous about how my body would handle the surgery. What are your thoughts?
You will do fine with Dr. Paley. I see mostly young patient here from age ranging from 20-30s. I am probably one of the older ones doing CLL. He has very good setup. The PT staff are very well trained, you are given instruction and just need to follow through out the procedure. I was expecting lot worst but so far the ride has been great. I have still 67% to go...
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Thanks for the update Cooper.
I was hoping to have a job while lengthening as well. Is it good to be working or would you rather have taken a few months off for LL if you could?
Good luck!
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I am doing very well so far. I should be at 42MM end of the day. I feel bit taller now and the feel is amazing...in one word...priceless!!! I still need to go lot more, cannot wait to be 7 cm taller. I do not know the exact cm of LL, playing by the ear.
Same routine every day. Therapy, work from hotel and hang around with other CLL friends. Past few weeks having ton of fun, drinking and socializing like before the surgery. I feel completely normal and sometime forget I have two broken bones :)
I am actually going out of town on business for few days next week. I have a friend and together will drive to Tampa. My first business trip after the surgery. I am bit nervous whether I can sit on chair and attend meeting for hours. Will see....but feels great so far. Will be a good break from WPB.
There are lots of patients here in hotel. About 7-9CLL from many different countries. I love going out breakfast in the morning and socializing with LL buddies and their family. I do not eat breakfast every day but when I am out there I do have fun. This has been very good journey so far and I could not ask for better place or doctor. The CLL community is like family and you get bonding pretty quickly. Some of the friends I met here probably will remain good buddies forever. We went through similar pain, experience, stress and fun whenever we can.
I am pretty busy working full time, doing therapy thrice a day. Sometime I only do two. My body get tired and so as my motivation. I see glass more than half full now. Seems like LL thing will be over soon.... Asta la vista....later!
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This is the last one at 30CMs. I am scheduled for Monday and will post that later when time permits....should be around 43cms by then...
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Which hotel are you at?
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congrats on your smooth journey Cooper :)
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I am at Homewood suites.
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I hit 5CM on Sunday July 26th. My muscle are getting tighter at this state. I can sit on a chair for longer that 5-10 minutes. Have to raise a leg. Went to hair cut yesterday and I asked to speed up after 10 minutes. I was very uncomfortable and was moving side to side. With the leg raise I am comfortable.
I feel home at the hotel. After 2 months of stay. We go swimming together, watched movie in group some time. It's been really fun with other patient.
One piece of advice- bring a friend or family for the first 30-40 days. You will need someone. It is very hard to do this surgery alone.
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Stay strong you're nearly there bro. Happy for you :
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I hit 6CM few days ago. Planning on lengthening about 6.7CM on right and 7.1CM on left. I should be done this Sunday. My last x-rays looks really good. Dr. told me I could go to 8cm but I think that will be too much. I been feeling tightness after I passed 5cm and it will take superb effort to lengthen 8cm. I been lazy this past week, catch mild cold and was coughing every now and then. I am tired of physical therapy, staying at the hotel and looking forward to going back home.
I am clear to go home and therefore leaving WPB this FRIDAY. I will lengthen few days at home. I have no pain and my leg feel stronger. I have not taken any pain medication since last three weeks. I do not have any pain...knock on wood :). I take Z quill every night to aid sleep. My sleeping has been better, I do wake up at night mostly one time and fall right back to sleep.
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Without a doubt you've gone to the best surgeon for this procedure.
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I hit 5CM on Sunday July 26th. My muscle are getting tighter at this state. I can sit on a chair for longer that 5-10 minutes. Have to raise a leg. Went to hair cut yesterday and I asked to speed up after 10 minutes. I was very uncomfortable and was moving side to side. With the leg raise I am comfortable.
I feel home at the hotel. After 2 months of stay. We go swimming together, watched movie in group some time. It's been really fun with other patient.
One piece of advice- bring a friend or family for the first 30-40 days. You will need someone. It is very hard to do this surgery alone.
I Wish I had followed this advice- but instead plunged into it. I'm not quite at the 30 day mark but someone close to me would have been a lifesaver.
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Congrats on the height gain. Do you walk with help of crutches? How is your walking?
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I hit 6CM few days ago. Planning on lengthening about 6.7CM on right and 7.1CM on left. I should be done this Sunday. My last x-rays looks really good. Dr. told me I could go to 8cm but I think that will be too much. I been feeling tightness after I passed 5cm and it will take superb effort to lengthen 8cm. I been lazy this past week, catch mild cold and was coughing every now and then. I am tired of physical therapy, staying at the hotel and looking forward to going back home.
I am clear to go home and therefore leaving WPB this FRIDAY. I will lengthen few days at home. I have no pain and my leg feel stronger. I have not taken any pain medication since last three weeks. I do not have any pain...knock on wood :). I take Z quill every night to aid sleep. My sleeping has been better, I do wake up at night mostly one time and fall right back to sleep.
How are you doing, Cooper? Are you back home? It must be great to be done! What was final increase, did you stop at 7? I can't wait to get my surgery scheduled and get started!
Good luck with the next stage!
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I got home last week. I gained 6.5 on right and 6.9 on left. My legs feel great right after I stopped lengthening. I can stay in a chair for long hours 4-5 months. I am on crutches. I cook sometime but will need help to transfer stuff. I do PT at home and swimming almost everyday. I skip swimming when raining.
I will do my x-Ray around 15th sep. my callous looks great and may able to put full weight bearing in about 3 weeks. I am feeling more normal and more strong everyday.
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I got home last week. I gained 6.5 on right and 6.9 on left. My legs feel great right after I stopped lengthening. I can stay in a chair for long hours 4-5 months. I am on crutches. I cook sometime but will need help to transfer stuff. I do PT at home and swimming almost everyday. I skip swimming when raining.
I will do my x-Ray around 15th sep. my callous looks great and may able to put full weight bearing in about 3 weeks. I am feeling more normal and more strong everyday.
This is great news! Congratz on finishing distraction.
You had a very smooth LL journey and hopefully mine goes the same as yours :)
Are you allowed to walk and full weight bear on both legs because I heard that the nails are at it's weakest point after full distraction?
Do you plan to lengthen your tibias as well?
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Thanks for the positive posts. Do you think the amount you gained is fine proportion wise? Temptation to get maximum allowed but differing opinions on whether it looks strange.
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This is great news! Congratz on finishing distraction.
You had a very smooth LL journey and hopefully mine goes the same as yours :)
Are you allowed to walk and full weight bear on both legs because I heard that the nails are at it's weakest point after full distraction?
Do you plan to lengthen your tibias as well?
I have temptation to do tibia but not sure when and how. I like my original plan if 6.5 and 5cm. My proportion looks fine and can't even tell. No one will notice. Beautiful part of doing 6.5 is muscle adapts pretty well. I have no stretching or any soft tissue issue. I am not allowed to full weight bearing just yet. I use crutches everywhere. I went to watch November man yesterday and no problem at all sitting on chair for long time. I will take my X-ray in 2 weeks and hope dr. Paley will let me walk unaided.
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Hey cooper! Happy to here an update from you and glad everything is going well! I have my consultation with paley on the 4th and I am flying in tonight. Do you think we can meet up so I can ask some questions and hear about your experience? Im staying at the homewood. Thanks!
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I got home last week. I gained 6.5 on right and 6.9 on left. My legs feel great right after I stopped lengthening. I can stay in a chair for long hours 4-5 months. I am on crutches. I cook sometime but will need help to transfer stuff. I do PT at home and swimming almost everyday. I skip swimming when raining.
I will do my x-Ray around 15th sep. my callous looks great and may able to put full weight bearing in about 3 weeks. I am feeling more normal and more strong everyday.
Nvm just saw your home now. What made you decide to not do 8cm? Anyway you could post a picture of your new proportions? What is your sitting height? Thanks for answering!
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Sorry forgot one more question, how is your height neurosis now? Still feel short or do you feel confident!!? ;D
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Short kid- I do feel bit taller than before. With crutches can't say whether height neurosis is completely gone. But when I think of height I feel much better, warm and not so depress.
I think 8cm is too much IMO especially with small guys. If you are 160-164 than it is tough to pull but not impossible.
I was worried about femur getting too long and also consolidation time and losing athletic ability. I need to get back to sport at least 90/95% otherwise I might get depress. Sport is big part of my life and I did not want that to go for 1cm gain.
I think the best thing about dr. Paley is the dedicated PT staff. I never lost range of motion and my therapist was super nice. I miss them and many other friend I met at WPB.
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do you mind telling me your sitting height? We have very similar starting heights so I am curious
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I hope you are doing well Cooper.
In your earlier post you mentioned that you were going to have an x-ray on sept 15. How was your x-ray. I hope good news.
Are you still using crutches?
You are the only post-lengthening precice patient on this forum (that I know of), your answers are truly appreciated.
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Thanks for following up Plzen. I did the x-ray on the 9th. It is healing really well, but, unfortunately not ready to full WB. Dr. Paley allowed me to put on about 100lbs on each leg and still advised to be on crutches. I think I will be off crutches in about 3 weeks.
Everything else is going as normal. The surgery has not impacted anything other than normal walking. I can stay long hours in office, have gone to theatre and watched movies. I do feel my leg are getting stronger and possibly walk without crutches but cannot test the water. The risk is too high.
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It is great that you can do more things. Do not worry, 3 weeks will be over before you know. It is better to be safe than sorry.
Is standing straight a problems, any major muscle stiffness? Are you using any pain pills? Sleep ok?
Do you still see a physical therapist? Can someone get away with not having a physical therapist after lengthening, granted he will do all the exercises himself?
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Update 10/19/2014
I am crutches free now. It's been two about weeks and feels great. It was not easy at day 1. I felt uncomfortable, little bit pain on hip area. Plus my brain certainly was not accepting the fact I can walk normal. It took exactly 4 months post op to ditch the crutches. The last two weeks been great....in one word...AWESOME! I am doing pretty much everything except running and sports. I can walk up and down stairs with one leg no problem. I was very careful for few days but not no issue there.
I think my journey was one of the easiest one. I was preparing for worst but lucky me I guess. I had no pain whatsoever. Reflecting back, my biggest pain was first bowl movement and the first IT band stretching. Other than that I was sailing very well from the get go. Importantly I worked the whole time and no loss of income in most part. I think I will return back to full athleticism. I am planning on playing sport in 2 months from now but will definitely check with Dr. Paley before.
I am considering tibia...lengthening is addictive :) I am not sure where and what method. I prefer not to spend another $100K again plus want to be stress free. I was paranoid all the time about any complication/nail bending/malfunctioning et cetera. Honestly many times I forgot about partial WB. Several times I stand in ONE FEET and I even walked once while lengthening. Ok, I was not testing it was accidental. One time I was tying my shoe lace with one feet on ground and another one on car door lol. I forgot I had precise nail in my body...no pain whatsoever. I was so stressed until I saw my x-ray and everything was in control.
I prefer doing LATN/LON on my tibia for several reason. 1) Mobility right after lengthening. Most people walk without crutches in 2-3 weeks 2) Piece of mind. More control over the lengthening mechanism. Planning on 5/5.5cm on tibia to keep the proportion.
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I was paranoid all the time about any complication/nail bending/malfunctioning et cetera.
Absolutely true with internal nails! This was in my mind and each distraction session was nerve racking. I would have adrenal burnout after each X-ray session worrying about whether the nails are working :o
I feel satisfied that I'm done with internal nails and I can now focus on externals and not worry about nail failure.
Honestly many times I forgot about partial WB. Several times I stand in ONE FEET and I even walked once while lengthening. Ok, I was not testing it was accidental. One time I was tying my shoe lace with one feet on ground and another one on car door lol. I forgot I had precise nail in my body...no pain whatsoever. I was so stressed until I saw my x-ray and everything was in control.
I laughed at this because today I accidentally stood and put my whole weight on one leg while climbing the stairs. I had a panic attack and immediately checked if my leg was intact.
Anyways, how are you doing now? Are you walking normal without getting too much attention?
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Hope you are fine
Any updates please
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Hi yesterday I just had consultation with paley now I am in Wpb haha
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Update:
I have been playing tennis lately. I can run and jump fine. Small jump only. Not up to same speed but able to rally around. But if I continue to do so regularly in six months time I will be close to pre LL.
Sometimes I feel discomfort in hip area. I emailed Dr. Paley and he mentioned it will go away after the nail removal.
Rest is looking good. Just had 1 year anniversary. I am very happy with the surgery process and considering tibia at the moment. I might go outside US for cheaper option. Looking into Dr. Monegal, Dr. Inan and Dr. Lee as potential option.
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thanks for the update Cooper :)
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Good to hear of ur smooth recovery Cooper :D
My journey with Paley starts shortly on 30 Jun- am ting bricks
BTW, are u aware of what nail removal actually entails? When will u be considering it?
Best with tibs!!
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Cooper you are great
Which one do you prefer: monegal or paley?
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DO you play tennis?
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cooper, are you ok? why dont you answer my questions?