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Author Topic: RLS’ Log Entries - Bilateral Femurs 2022  (Read 3039 times)

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RealLostSoul

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RLS’ Log Entries - Bilateral Femurs 2022
« on: August 30, 2022, 09:52:25 PM »

A few words before I begin my log entries:
Hey guys I am a member here for many years. I did much much research in the past which made me carefully consider doing this. 

I initially didn‘t want to start a diary and I may add that I still don‘t know if it‘s a good idea and if I can keep it updated but I will try regardless, mainly because I feel like I want to give an unbiased straight from the heart overview of my experience so people who may follow in my footsteps can see my real experience and decide if they can bear this procedure or not. Thus, I will be mainly referring to things which may show importance for prospective patients. I feel my moral obligation is to give you guys a no-bs patient report as a sort of community service and to give you all something back for the years that I‘ve been on this site and gathered a lot of information about CLL in general. I will be trying to answer your questions but I can‘t promise when I will answer. Also, sorry for the typos and stuff, as of writing this I am surgery day and still high from oxycodon and fentanyl perhaps.

General informations before we start:

My age: 21
My pre op height: 5’10
My dr: Dr Becker and Dr Betz although as I underwent surgery in Freiburg my main dr is Dr Becker. He does basically everything and guides me through the process. I have only seen Betz briefly today right before the surgery, apart from the consult of course.
Why LL? Severe height dysphoria since a decade which hinders me in my life, always. Plus my father is 6’2 and I want to improve my relationship with my family. To reference I can barely talk to my father because of height neurosis. It’s making me very very depressed. I’d say I do this 70% for myself, so I can be free of always having this neurosis in my head while under people, I’ll have a job where I will stand around a lot (surgeon one day hopefully) and the last thing I want is to think about height while operating on patients. I compare this to a transgender person who feels wrong in their biological body which obviously is a very valid experience. And the other 30% is to increase my relationship with my family because especially my mother suffered a lot from years of me being this way. I would never do this for girls although I reckon I will probably be more interesting to a lot of them once I am of taller stature.
Another small factor: I have been climbing a lot, I was on the rock and the gym (boulder and rope) over 40 times this year. I even got as far as taking parts in a competition. You see I am climbing since I was young but the last 4 years, especially the last 2 have I’ve been really active. However, I never really improved, I was still climbing the same grades that I did 4 years ago, maybe half a grade harder, while my friend who was climbing a lot as a kid but climbed like 5 times the last 2 years is still 3 grades better than me, that’s a lot! It’s like you do bodybuilding and still press the same weight after 4 years, with no progress, how much would that make you quit? I told myself, if I significantly get better this summer I will think twice about LL but I didn’t get any better even after climbing 3-4 times a week. That kind of made me throw the towel, I will miss it from now on and hope I can return one day in many years for sure but it’s not worth it living with this severe state of height dysphoria forever just to occasionally climb low grades.
Why Betzinstitute? Honestly many factors. I talked to a lot of surgeons but the main thing is stryde unavailable. The next thing it’s closest to me and I’m bilingual with German being my mother tongue. Also good friends I have met here did it with Betz (big shoutouts to RB, I finally made it!) and have had a positive experience. I probably can’t mentally stand being far from home for 3 months like with US doctors. I also think Betz way of making the bone cut is very good (less traumatic than osteotomy with hammer, etc.). He is one of the most experienced out there and Dr Becker also seems like a great doctor. I think of them only positive as of now :). I am also not afraid of clicking.
Did you get IT band release? Yes, thankfully :) 

The beginning:

So I arrived in a small beautiful house in a mountainous, hilly side south to Freiburg. I arrived 2 days pre op so on the 28th August 2022. I drove 11h by car together with my parents and we stayed in said airbnb. Unfortunately my mother caught a cold 1 week prior to arrival which made me wear a mask at home. Even more unfortunately is the fate that me and my father got sick yesterday! 1 day pre op for me which made me really really upset because I thought the surgery may be cancelled again after the long drive and doing all the pre op checkups (note; my surgery date was cancelled twice in the past due to covid once and some other issues). After talking to the anaesthesiologist he told me we will wait and see and a sore throat isn’t necessarily a cause to cancel. However, I have had very mild fever for half a day and a throat-ache. I wasn’t sure if it is going to happen, also concerned about deep bone infection or osteomyelitis. However, they checked my inflammation parameters in my blood draw and it was alright, plus it’s a common cold (viral) and those complications develop from severe bacterial infections which already entered the blood stream resulting in sepsis like phenomena. Anyways, as I felt better today we decided to go through with it which I am very glad about. I only entered with a very mild remaining sore throat, no fever.

I have never underwent surgery in my life so I was extremely afraid. I am not going to sugercoat it I actually cried and hyperventilated a bit on my way to the hospital and right before surgery. Thankfully the nurses and doctors here were all super nice and especially the one that brought me to the OR has my great appreciation for calming me down so well!
They shaved my legs did some last checkups, I had to sign the papers, went to the toilet and then we went to the OR. Although I am a medical student myself and both know what’s exactly going to happen and have assisted anaesthetic settings before, I couldn’t help but feel like I was walking down death row to the execution chamber :(. My biggest fear before was that I will be permanently cognitively impaired or even die due to anesthesia.
I lay down and they hooked me up to an IV, which didn’t really hurt at all but I thought to myself “this is it, it’s going to happen at any time now”. They then put the mask on me to preoxygenate (I got TIVA so no narcotic gasses) and I felt a bit weird. Then they held my hand and said I am going to sleep now and I closed my eyes, focused on my music (had an mp3 and headphones with me) which only helped a slight bit and about 5 seconds later I felt very weird inside, like really really high, super wavy, trippy. It only lasted for like 2 seconds until my mind travelled through the space time continuum haha x). It was like a switch. I felt that weird drug effect and boom I was in a different room. I knew immediately I have reawoken but I was a bit confused and I was shivering like crazy. Like really bad but it went away after about 20 minutes, it was uncomfortable but not the end of the world. I felt like really drunk, where when I moved my head everything kind of “lagged” behind my eyes. I remember I kept asking them if everything went well and how late it is. I also asked them when I have reawoken, they said half past 11 am but now it was like quarter past 12. It’s an interesting philosophical question to me, asking if you truly experience something when you can’t remember at all. I always thought yes because you still experience the present moment but now I think differently. Memories are what shape us. Anyways I immediately felt very, very reliefed. My anxiety the moment I knew it was over went from over 9000 to 0. Had a bit of a worse throat ache, probably from the cold and the intubation irritating it a little bit but it’s not that bad plus already almost disappeared as of writing this.

My surgery went good, although sadly I was a difficult case as my femurs showed more curvature than the average and I had a thin bone marrow. Note: I got the 11’ Betzbone and I only weigh 115lbs which is probably the reason for my thin bone canal but thankfully the nails should easily support my weight. My initial gap is 5mm.

I was being rolled to my room within the next 40 minutes or so, where the first bad thing started to happen. You see, as I didn’t have a catheter (not even during the surgery) and I was about 3 1/2 hours under I had to urgently pee. Due to the opioids I couldn’t however! That was so uncomfortable, even hurtful, I had a bottle to piss in but couldn’t relieve myself. So they brought me a chair where I could sit and try, this worked a little better but I unironically sat on there for an hour while only like 3 droplets of urine per minute came out. However, after a while it got better and I could somehow relief myself in the bottle which was put between my legs and I consistently pissed for the last 10 hours haha. I’m just running out it feels like, already filled 5 of said bottles, never 100% relieving myself but good enough to not have it on my mind.
Sorry for that mildly gross story but it’s part of the journey so you have to know. Dr Becker said tomorrow it’s going to be fine, although I am definitely not looking forward to my (presumably unsuccessful) first stool excretion.

I have a pretty good rational estimation of subjective pain levels as i have experienced a lot of physical pain so I can give a good objective guess although I know pain is highly subjective. I would say not being able to urinate was a 8-9/10 but it improved quickly after i was able to piss continuously in the bottle. In hindsight I definitely wouldn’t change to a catheter though. I am still glad they spared me of that! The first time on this chair was the worst pain as of today though.

Now onto the good things. The wifi is good, I wasn’t nauseous or even had to throw up at all, the staff is really nice, the room is really nice for a hospital room and I have a private room which is nice (however, I am really curious and looking forward to getting to know other CLL patients and hear their stories), and the hospital food is also quite good (definitely won’t need Lieferando haha) although the compression boots lay tied on my abdomen, perhaps this might be one reason why I could eat only very slowly. By which I mean VERY slowly. So slow in fact that I got dinner before I finished lunch haha. I ate 3 noodles/min lol.
The pain in my legs is very low. While laying around it’s 1/10 so basically nothing. While moving them around it goes up to 3-4/10 maybe. I always tried to imagine how this will feel but trust me, it’s such a highly unique experience you can’t imagine it beforehand. Best I can describe is a big sore after heavy workout. It’s like to be kissed by Medusa. My legs are turned to stone. I can barely move them, Becker already gave me some exercise like lifting my leg, crossing my legs, etc. I should do them hourly which I did. We even got up and walked a few metres in the hallway and while I initially thought this is never gonna work it was actually better than I thought. Becker held me on one side and I walked a bit across the corridor. Pain while walking was worse on my left hip which I say was a 4-5/10 (bearable), probably due to incision sites. I was walking very slowly and only with small steps but I felt much more stable than I thought. He said I did much better than the average which lifted my spirits a bit, also my cardiovascular system didn’t go down the train which most people experience. However when I lay down again I started sweating and felt like I ran a marathon. Plus my bladder hurt from holding back the pee for 10 minutes again -_-  was kinda annoying. Rest of the day I phoned a few friends which helped to pass the time drastically. Watched a bit tv too but idk I can’t watch random TV programs for that long. Will watch yt videos instead tomorrow. A nurse once came by, measured my blood pressure and gave me heparin shot into my lower abdomen which stung and burned a bit but only for like 5-10 seconds so not a big deal at all. Another good thing was I got a momentary blissful experience probably from the opiates I suppose. As I was chilling in bed I suddenly started laughing about random
nonsensical stuff unrelated and disconnected from any reality. Like I suddenly thought “oh I look like Johny Depp as a martian with that compression boots” and then started laughing for 10 minutes straight about the actors name… but in a blissful mood. It was really absurd but enjoyable. Another time while doing the leg exercises I thought “I am Adam Ondra visualizing the crux of Silence haha” (sport climbing related, I was a climber before LL and yea elite climbers sometimes lay down and move their limbs around in the air to recollect their muscle memory for a hard route that they are working on. I was having a blast with my thoughts for some reason, I felt high and like in a bubble. idk.

Anyways, so the time flew by quite fast, didn’t even need to unpack my laptop, I anticipated to play the game “Rimworld” because you can play that well even while super drowsy from medication as you can just watch your colonists dig or build if you don’t speed up, it’s just super relaxing and can eat a lot of time - perfect for that circumstances. Alternatively if the internet complies World of warcraft classic wotlk (also super relaxing) as it soon releases. Didn’t have time for that though haha, maybe tomorrow. I will stay at this hospital until Friday then move to a close rehab center where I’ll stay for another 2 weeks ish before leaving for my hometown.

Last bad thing for today. In the evening around 8 pm I had to take a few meds. If I am not mistaken those were novalgin, ibuprofen, gastric protector and oxycodon. The ibuprofen was so huge I had to cut it up to swallow it. It still was a bit though. Anyways, about 40 min after taking the oxy I was writing on this very text as all of a sudden my ears started ringing like crazy and my vision was closing in like a tunnel, plus I started sweating like crazy. I immediately called the nurse and he gave me some antiemetic and hooked me up to a drip to stabilise my condition. He measured my blood pressure to be 70/40 (!!). Thankfully it quickly resolved itself but that was quite scary. If that’s how an opiate OD feels like trust me it’s not pleasant at all. At least if someone takes a delayed release tab of oxycodone orally. It just probably was a bit too much because of my low weight and literally so many meds and I also pre-existingly take a sleeping pill (mirtazapine) at night so yea. Thankfully he quickly acted there but I am afraid it could come again while I try to sleep but he assured me they will be looking out for me but it shouldn’t peak again (I didn’t take the sleeping pill for now) and if it does I will wake up because of it. So yea let’s see.

That brings me to now; I will do one last rep of the little exercise before going to sleep. My legs are stiff like stone but the pain is so low I think I can catch at least a few hours. This was the most bizarre, weird, and unique feeling thing I have ever done. I am so glad I got over the toughest part (the surgery), it can only go one direction from now on and I will definitely jump on the train as Dr Becker likes to say, by which he means just follow standard protocols and highly valuate PT (most important thing of LL without a doubt). Thanks for reading this excessive post, if you have any questions, ask them straight away. I will answer if possible. Good night!
« Last Edit: August 30, 2022, 10:13:07 PM by RealLostSoul »
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boklecrt

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Re: RLS’ Log Entries - Bilateral Femurs 2022
« Reply #1 on: August 31, 2022, 02:24:32 AM »

Good first post of your diary, good luck

having a tall dad is a killer, we understand

keep up the good work
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5 cm gained through LON Tibia with Quynh in Ho Chi Minh, Vietnam
March 2022
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thankscience

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Re: RLS’ Log Entries - Bilateral Femurs 2022
« Reply #2 on: August 31, 2022, 07:32:55 AM »

Very informative post! I'll be following this closely.

And good luck with your lengthening!

How much are you aiming for?
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RealLostSoul

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Re: RLS’ Log Entries - Bilateral Femurs 2022
« Reply #3 on: August 31, 2022, 06:55:58 PM »

Thanks for your support guys!

How much are you aiming for?

I don’t have a particular number as a goal that I must reach under any circumstances. I’ll just dynamically see how I will be doing once I get into lengthening and then decide. I think about like 8cm.

First day post op

Okay so I am not going to sugercoat it the first night and first morning 24h post op was very rough. First of all I couldn’t sleep at all, I am naturally sleeping on my stomach and couldn’t roll away from my back because I still can’t move around that much. I asked a nurse to help me roll on my stomach but my incision sites (hip area) started to hurt too much so I had to roll back on my back and try my best to twist my upper body somehow comfortable for me but my back already hurt from all the laying down. I got like 1 h of sleep in the morning hours after they gave me another pain med that made me very drowsy. Then I awoke to severe pain. My throat ache returned and was quite bad (still hasn’t resided), and my legs hurt a lot. It was again a unique feeling, they said it’s probably bone pain from the surgery, best I can describe is it feels like you were ran over by a car or something. You feel crushed. Pain was 7-8/10 so not extreme hell, for example when I got one wisdom teeth removed I had 10/10 pain, which was definitely FAR WORSE - 10/10 to me is when you prefer dying over bearing it. However, 7-8/10 is still a lot and is only bearable for a short time. So they gave me another sip of Novalgin but it took 40 mins to kick in. I am going to be honest in that 40 minutes I felt very terrible. I really repeatedly had to tell myself why I am here and what this is all for. After 40 min I got very tired and slept another 2-3h and after that the pain was almost gone again, residing back to 2/10 at most. Becker visited me and I started walking on crutches. I must say walking on crutches is much smoother than I thought it will be. I could walk very far without getting exhausted. I walked with the 4 point contact walking method (= putting both crutches down before taking a step, it’s really slow, slower than a turtle). Walking is really smooth but standing up with the crutches is a tough task especially if the seat is quite low. However, I could go to the toilet by myself, peeing is back to normal but couldn’t excrete the bigger things yet. I hope this will go smoothly tomorrow.
Anyways I saw my parents once while walking out and got some fresh air, it was a good mental relief. Note; didn’t walk stairs yet. Then I slept again for an hour before I did my first lite PT. PT started very smooth and was absolutely fine. No pain at all. Stiffness is most annoying as of now. Also, tonight I am going to take tilidin instead of oxycodon but I am a bit afraid it might kill my blood pressure as well :(. I will take it now and immediately be ready to call the nurse once I feel like passing out again. Wish me luck. Oh and the nurse gave me cooling packs, they are great! They feel really good I must admit it’s a huge comfort.
So overall the day was rather bad, some good things but mostly downs. I know the first few days post op are going to be the hardest but I will survive. Tough times won’t last I am going to make it! If someone has some good motivation for me I would be very happy to hear it.
Peace!

e:/ one small thing I forgot, today I could eat a lot more! I must admit the hospital food is surprisingly delicious here.
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HeightGain

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Re: RLS’ Log Entries - Bilateral Femurs 2022
« Reply #4 on: August 31, 2022, 07:43:44 PM »

Good diary, good luck with the recovery

5 10 and 115lbs! That's pretty good going

If you're wanting to be a surgeon I would advise not gaining too much height as you'll strain your back bending over for surgery.

If you're into highs and need an anti emetic go for IV cyclizine

Are they going to stop the ibuprofen soon? They have a lot of side effects, not just those related to bone healing
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wanderer

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Re: RLS’ Log Entries - Bilateral Femurs 2022
« Reply #5 on: September 01, 2022, 03:56:52 AM »

Is Dr Becker still offering hair transplant procedures at his practice after taking up LL?

Just curious to understand his overall practice and how he splits time.
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RealLostSoul

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Re: RLS’ Log Entries - Bilateral Femurs 2022
« Reply #6 on: September 01, 2022, 07:05:26 PM »

Is Dr Becker still offering hair transplant procedures at his practice after taking up LL?

Just curious to understand his overall practice and how he splits time.

Hi, I am not sure but if I remember I can ask him later if you want. I know he told me he has to drive a lot between the 2 different clinics that Betzinstitute operates in (St Ingbert and Freiburg). So he is super busy. I kinda doubt he is really active in the hair transplantation scene anymore but I can ask.

Good diary, good luck with the recovery

5 10 and 115lbs! That's pretty good going

If you're wanting to be a surgeon I would advise not gaining too much height as you'll strain your back bending over for surgery.

If you're into highs and need an anti emetic go for IV cyclizine

Are they going to stop the ibuprofen soon? They have a lot of side effects, not just those related to bone healing

Hi thanks! Yea I know but I will see how lengthening will go and then decide how much I will do.

Yea I am naturally feather weight. Always was like that. I have a very thin frame too, for example I can overlap my pinky finger over my thumb when grabbing my wrist. I am honestly surprised that they fit an 11’ nail in haha

Interesting, but as of now I am doing fine, got rid of the IV already and I never felt nauseous so I don’t think I need that

Yea no worries ibuprofen is stopped long ago. I only took it on surgery day, a day before because of my cold and I think once in the morning of day 1 post op. So only 3 times here and once a day before the surgery

day 2 post op:

Feeling much much better now. Took the Tilidin last night and it was the best drug I have ever taken. Now I understand why all around the globe people get addicted to opiates, countries having fentanyl crisis etc. I took it and after a while felt so great. I was stiff as heck and couldn’t move but I felt like hovering, it was a warm fuzzy blissful feeling of being in a comfortable bubble that protects me from everything. Everything was great. I felt like flying over the hospital bed. It was very euphoric. I felt trippy but not in a bad way where you can’t think or write or have slurred speech. In fact I have been texting with a friend and didn’t want to go to sleep because I enjoyed it so much. The pain was down to 0. It worked very well for me. Anyways I fell asleep at like midnight and awoke at 6 am with bad pain (I’d say 6-7/10). I drank the Novalgin and the pain subsided and I went back to sleep until like 9 am. So I got a full night of rest with just a short awakening. I immediately noticed that I felt much more refreshed and motivated today. I walked a lot and I am still surprised how well you can actually walk. It’s slow but hell you have 2 femurs sawn apart but you can still move around like that. It’s very stable. Only standing up is still a hustle. I went to take xray to check if everything is well but this time I did feel a little dizzy and sat down for a moment before continuing (rather play it safe than risk falling over, also I talked with the nurse who was exceptionally nice and I really enjoyed talking with her), you have to know, I had to stand quite long at the xray because of 4 pictures plus without the compression boots you feel a little less stable (I am definitely more swiftly and light without them but it’s more exhausting to walk without them, anyways I am looking forward to getting rid of them but I will have to wear them for another weak or so)

I accidentally clicked once today, which Dr Becker told me will probably happen. It happened while moving back into bed and twisting my leg a bit too much. He showed me how to do the second click to finish the rotation, it worked fine and didn‘t hurt at all. It‘s pretty much like popping your finger joints. Even the sound is similar. I must admit though the clicking sound is more quiet than I thought it will be. Anyways we noted it and everything‘s alright!

Also finally could relieve myself at the toilet. They gave me an apple juice and an hour later I was still having the compression boots off so I could do it. It was a bit constipated but really not that bad. Maybe a tiny bit uncomfortable but felt good after I was able to do it. Didn‘t need stool softeners or laxatives etc. However had to go two other times that day and it‘s a bit annoying. I preferred when I didn‘t have to think about that haha.

Met Dr Becker‘s PT and she was really nice. Explained a lot of things to me and we walked together down the hallway this time with the 2 point contact walking. It feels a bit weird to really have your heel hit the floor first but it‘s doable and they said I did it exceptionally well.
I also showered which was a fresh relieve but then I had to wear the compression boots again. I am a bit afraid of thrombosis and pulmonary embolism to be honest. Especially because I am leaving for the rehab center tomorrow ;(. Anyways, going to sleep soon now.

Note: I think the pain management/protocol is very good. The only reason I had bad pain at the first night is because the oxy was too much for me and thus I played it safe and I didn’t drink another Novalgin afterwards (maybe was a mistake by me but who knows). If I would have I wouldn’t have had that bad pain. Like I said earlier, the first day started bad because of bad pain but the meds work fantastically.
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yerzadotru

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Re: RLS’ Log Entries - Bilateral Femurs 2022
« Reply #7 on: September 02, 2022, 03:39:55 AM »

This is great. Looking forward to your posts.

How is the hospital?
Can you use underarm crutches instead the forearm one?
Who did the surgery for you was it becker or betz? What was your impression of them?
How long will you be in the hospital for? Then will you go to another rehab?
What if your traveling into freiberg where do you put all your personal belonings when staying at the hospital is it safe?
What hospital are they doing it at in freiberg? Is the room single? What do you do all day to pass the time?
Whats the worst case you ever saw or happened or heard under betz/becker?

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RealLostSoul

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Re: RLS’ Log Entries - Bilateral Femurs 2022
« Reply #8 on: September 02, 2022, 08:04:37 AM »

This is great. Looking forward to your posts.

How is the hospital?
Can you use underarm crutches instead the forearm one?
Who did the surgery for you was it becker or betz? What was your impression of them?
How long will you be in the hospital for? Then will you go to another rehab?
What if your traveling into freiberg where do you put all your personal belonings when staying at the hospital is it safe?
What hospital are they doing it at in freiberg? Is the room single? What do you do all day to pass the time?
Whats the worst case you ever saw or happened or heard under betz/becker?



Hi there, I have some time right now to answer your questions :)
- It‘s very great. Very clean, nice staff, even nice food which was surprising. It‘s a private clinic so it‘s smaller, the wing I was staying at had like 5 patient rooms I think, and during my time there were only one or two other patients. That means the nurses have enough time for you. I am actually pretty sad that I have to leave today :(.
- I use forearm crutches. I think they are way better especially for learning to walk again. I wouldn‘t want to have underarm crutches.
- Both. Betz came here from Saarland for it and my impression was very good. I felt in safe hands, two surgeons one of which is doing that for 30 years, plus two anesthesiologist, and even though I had a difficult anatomy they did a splendid job, the xrays look great! Now post OP like I said Becker is guiding me, I haven‘t seen Betz since the surgery day anymore (it‘s due to him being in Saarland at his clinic). Becker and his PT are very nice, they are always responding quickly and calming me down when I get a little bit of hypochondria (which almost all people do once they have this done. And it’s a good thing. You have to be rather safe than sorry!)
- Yea I am leaving today for a rehab clinic nearby
- I am not quite sure what you mean with that question but you have two options for your personal items, one is you just take all your stuff with you on surgery day, you will go to your room before surgery starts, or like I did you go there without much and your parents or whoever brings it in some time later. It’s no problem and of course it’s safe, all your luggage is near you nobody could take it even if I highly doubt anybody here would ever even think about stealing a patients luggage xD. Haha it’s safe don’t worry about that I have a lot of luggage and everything is alright with it
- it’s called “2000 private clinic Freiburg”. Yes single room. Honestly I got my laptop with me to play some games but I didn’t find the time. Time flies by quite fast. You need to know that daily tasks like brushing your teeth etc takes much longer. I can stand at the sink unassisted it’s no problem at all but getting up and going there etc. It’s just much slower. Movement becomes different than pre op and you have to learn it like learning to drive. The younger you are the quicker you adapt, at least in my opinion although obviously it’s different individually. I learned it very fast. Also after PT and walking around I get a bit tired where I just prefer laying around. In my spare time I watched a few Yt videos, phoned or texted my family and friends and once I could play about half an hour, you can have your laptop on the hospital table that you can move over your bed, it’s convenient. Time flies by fast so don’t worry.
- Honestly what I heard in the forums, like a decade ago they had more issues with nails bending and stuff, Betz told me that as well but said nowadays they have overhauled them and rarely have problems anymore. Obviously stuff can go wrong, with any Doctor, that’s why you are signing the papers about complication. You need to be aware of what could happen. If something goes wrong they will help you and I heard about one guy whose screw came loose or something. In that case they are paying for the repair surgery. You see, it’s just simply good old survivorship bias. You hear about very few cases where things go wrong, but the truth is you will most likely be fine just like most people [who don’t report back, you mostly hear about the negative ones] because they do a lot of those surgeries. It’s much more than I would have ever thought. This surgery is hard and has risks, that’s the reality of it, I wouldn’t ever recommend it to anybody. You should only ever do this if you really really suffer immensely and your quality of life is low because of height dysphoria. I would never ever do this for others, dating/career chances or status.
Another thing is the It band story. Initially they didn’t want to release it but after a lot of patients got wide leg issues and had to do another surgery for it, they started doing it. I got it band release in the initial surgery which I am very happy about.
One other story Becker told me that I found quite amusing is they had someone who jumped on a trampoline DURING lengthening xDDD. Well, you have to be informed when you do this that’s for sure. But in the end, if you follow the guidelines, take PT seriously and are motivated to keep pushing (PT feels tough on the body, it’s comparable to sports when you have to give everything and power it), and be cautious you will have good results for sure.
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RealLostSoul

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Re: RLS’ Log Entries - Bilateral Femurs 2022
« Reply #9 on: September 02, 2022, 11:01:54 PM »

Third day post OP:
Today I moved to the reha clinic Mooswald. Before that we did the stairs, going down the stairs was easy but going up was really hard. Took me half a minute for one stair and was exhausted afterwards. I am sure though it will get better.
Mooswald climic is much bigger. I got a room at the very end of a wing where it takes me a long way to walk to the cantina and to the gym. Even for normal walking I would say it‘s quite far. It‘s good and they did that on purpose but I lost my way in the beginning twice haha. Anyways, they helped me getting my food and the food tasted decent. Dinner was better than lunch but anyways, got my stretching sheet but I will start doing that tomorrow. It felt really exhausting today because I walked so much. I felt in that single day so much improvement though. In the evening I had to rest and I played some videogames with a friend. The internet here works good. I am in a general rehab for a lot of things so the average patient here is 80 years old with knee replacement etc. 2 other LL patients though one of which I have already met. He stays here for the entire lengthening process and I need to tell you, if you can afford it (time wise, financially, etc) then you should do it like that. The daily schedules and the help will definitely improve your recovery and you will be much much safer. I would also like to stay for 3 months because of safety reasons but unfortunately I need to be home at some point for uni.

One bad thing happened today and I need to tell you, I also want to know if anybody else had a similar experience, I may make a post in another thread soon. (If you don’t like a bit gross stories be warned.)
So at some point in the afternoon I was going to the bathroom and noticed a big blue-black colorisation on my genitalia which covers about 2/3 of the Pen*s and a bit of my groin area, it wasn‘t there before. I freaked tf out when I saw it. It didn‘t hurt at all but I was having a severe panic attack. Like real real bad. Probably one of the worst I ever had. I thought wtf where did this come from and is my trunk about to fall of from necrosis? Necrosis must hurt but who knows, I am on such strong pain killers, I have no pain in my sawn legs so can’t throw that of the table, right? I immediately called Becker but he called me back some 15 minutes later. I didn‘t wait I ran very fast to the nearest Dr/nurse station and asked them to check it out. I was so fast it was unbelievable. I would say not running/jogging speed but normal person who is walking fast to catch a bus speed. I probably overdid it a bit but it was astonishing to see how swiftly I could move. Anyways both the Dr there and Dr Becker told me it‘s just superficial haematoma that sunk in / dripped down from the hip incision site due to the blood thinners I am taking. They said it‘s harmless and nothing to worry about but I am still a bit scared it‘s going to damage the skin / nerve cells permanently. And it looks really really bad. If I would post a picture you would immediately understand why I panicked there. If it‘s a heamatoma I could massage it perhaps but I don‘t want to try that yet hahaha. Still feeling numb and 0 intimate thoughts or desires. Probably the pain meds, hopefully. Still concerned because it looks so fcking terrible 😭. Anybody experienced that? How long did it take to go away and did it leave anything behind? I feel so bad about it, it‘s probably harmless like they said but I am very sensitive about that body part ;(.
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yerzadotru

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Re: RLS’ Log Entries - Bilateral Femurs 2022
« Reply #10 on: September 03, 2022, 05:49:13 AM »

This post is amazing so exciting thank you so much sharing your experience.

How long will you be at the rehab clinic for?
Hope we can hear more about your routine schedule days at the clinic :)
How are the rooms at the clinic is it single room is the wifi and food good?
Do you know has anyone ever died or been permanently disabled from LL from betz institute? (its my biggest worry)
How is your pain level now? How many hours of sleep are you getting?


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RealLostSoul

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Re: RLS’ Log Entries - Bilateral Femurs 2022
« Reply #11 on: September 04, 2022, 07:08:45 AM »

Is Dr Becker still offering hair transplant procedures at his practice after taking up LL?

Just curious to understand his overall practice and how he splits time.

First of all, I asked him now and here is the answer: he is not doing anything other than LL anymore. It is impossible time wise to do anything else. In the past he did hair transplantation and some other aesthetic surgeries.

This post is amazing so exciting thank you so much sharing your experience.

How long will you be at the rehab clinic for?
Hope we can hear more about your routine schedule days at the clinic :)
How are the rooms at the clinic is it single room is the wifi and food good?
Do you know has anyone ever died or been permanently disabled from LL from betz institute? (its my biggest worry)
How is your pain level now? How many hours of sleep are you getting?


Hi thanks for the kind words
- about 2 weeks but if possible you should stay longer in my opinion. However, as of now the loneliness is hitting me hard so it has it‘s upsides as well, more on that below.
- sure I will update about it
- rooms are nice, like a hotel room, wifi is very good. Played some video games with a friend at night and it worked without any problems, btw doing so was a great momentary escape for me. The food is alright. Generally breakfast und dinner is quite good but lunch wasn‘t my taste as for now. Still can eat only slowly and not that much.
- I don‘t have a patient overview, only from what you can see on this forum and the old forums. There is a chance of death or permanent disability but it‘s low. If you are a young and healthy person you should be fine. The procedure is hard though, even if I think here it‘s much less hard than if you‘d do LON somewhere for example (I would never do externals on femurs ever). It‘s still a tough surgery, once you are in it, everyone knows it. It‘s just before when you are undamaged and dreaming of being taller where you might think “hm how hard is this going to be” - it is going to be very hard.
- except for the first night I am now getting full nights of sleep. Pain level is low. In the morning after waking up I have some pain (up to 5/10 at most) but for the rest of the day it’s barely there (1-2/10 or so)
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yerzadotru

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Re: RLS’ Log Entries - Bilateral Femurs 2022
« Reply #12 on: September 04, 2022, 08:06:03 AM »

Happy to hear your updates. Glad your doing great. :)

Would you have any advice for someone getting the surgery from betz?
Is there a limit to how long and far you can walk today?
Is it ok to walk without crutches now or during lengthening?
Whats the total cost of the surgery and did it include everything and the rehab clinic for certain amount of days?
How long will you need to stay at the rehab clinic for before being able to go home?
How are you feeling mentally feeling compared to before with all the medicine?
How many hours per day are you exercising and physical therapy for?
What are you doing during the other personal time to pass time?
How did you go about finding a new physical therapist and medicine for when you go home? Did you do it ahead of time already?
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RealLostSoul

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Re: RLS’ Log Entries - Bilateral Femurs 2022
« Reply #13 on: September 04, 2022, 07:15:55 PM »

Happy to hear your updates. Glad your doing great. :)

Would you have any advice for someone getting the surgery from betz?
Is there a limit to how long and far you can walk today?
Is it ok to walk without crutches now or during lengthening?
Whats the total cost of the surgery and did it include everything and the rehab clinic for certain amount of days?
How long will you need to stay at the rehab clinic for before being able to go home?
How are you feeling mentally feeling compared to before with all the medicine?
How many hours per day are you exercising and physical therapy for?
What are you doing during the other personal time to pass time?
How did you go about finding a new physical therapist and medicine for when you go home? Did you do it ahead of time already?

- good question I am still a bit early in the process but as of now I would say, first of all understand the medical details behind this, be really really sure you want to do this - you will not be able to grasp it until you are sitting in the boat, even with years of research, this is hard - even though imo for Betz patients it‘s less hard (no externals, weightbearing nail makes a huge difference, you can go home after some time, good surgical expertise thus as minimally invasive as possible), it‘s still hard as hell and nothing compared to other cosmetic surgeries. Hospital, thousands of drugs to take, stretching is very exhausting, stiffness, loneliness etc etc. It‘s a tough journey so beware of that. Follow the protocols, rigorously stretch! And don’t quit, even though its hard sometimes keep pushing. Oh and also if you want less than 6cm don’t do the surgery. All of this is only worth it to gain some good amounts of height. If you wouldn’t gain height this would be a very terrible experience. If you want to professionally pursue sports (you are an athlete) never do the surgery. By doing this you sign a pact in which you will have to sacrifice some things.
- haven’t tested out but I can walk long distances without a problem. Just after pt and stretching I am very tired.
- not now, no. You can walk without crutches during lengthening in a safe confined space like your apartment. But for public places you need crutches until a bit after lengthening.
- you can check it on their website. Bout 53k and yes reha is included
- about 2 weeks. If you can stay longer though, the only good side for me leaving so quickly is that I will be back home with my parents and not so lonely and home sick anymore…
- Not sure what you mean with that question? Before surgery or before a few days ago? And mentally in regards to mood/emotions or cognitively/thinking capacity?
- you will need to stretch 4h every day for entire lengthening and on top of that physiotherapy appointments.
- Resting, watching videos, calling friends, play video games.
- that was actually a bit if a hustle because I had to get a prescription for health insurance reasons but I have a sports therapist near my home whom I am going to visit, Dr Becker will give you a box  with your medication.
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RealLostSoul

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Re: RLS’ Log Entries - Bilateral Femurs 2022
« Reply #14 on: September 04, 2022, 08:42:01 PM »

5th day post op.

Today was a bit tough. Did 15 clicks, right leg was rather easy but left leg still hurt like hell at the incision site. Dr Becker had to help me. I know I started quite early, usually it’s 7th day post op but still a bit disappointed that I couldn’t do it by myself. Met another LL patient at lunch who stayed here for almost 3 months already. He looks very good, you couldn’t ever tell something’s off irl, even me I couldn’t see what segment he did before I asked (proportions are overrated anyways).
I could eat a lot more now that the compression pants are off. Also sitting together with someone else than myself at lunch was so much better for my mood.
I was quite disappointed by myself in my today’s stretch. I tried hard and even listened to hardstyle gym motivation music but I couldn’t really finish the entire sets in one go. I just felt too tired and kinda like fainting after a while so I had to make stops. I should be doing like at least 3h of stretching as of now but I struggle with a few exercises:(. I will ask if they can maybe give me some others that I could do while laying down as those are as of now really better for my cardiovascular system. Felt really tired today but got to speak with my new found LL friend. Cause he is here for 3 months he has seen a few LL patients coming and going. He told me preconsolidation is much much more of an issue than nonunion. Nonunion is really rare but a lot of patients who get lazy, don’t lengthen for a day or whatever run the risk of quickly having to return for reosteotomy.
Another old lady asked me if I got a skiing accident (in the middle of August xD), more people here are curious about me because I am so young.
Also one opinion of mine and everyone who is in this, age matters, some people here say it doesn’t matter because the bone heals at all ages, which is true but the bone lengthening is just one part of it. Stretching muscles and wound recovery, flexibility, overall fitness are also important factors. All of which young age favours. If you are old and especially with other health issues you run the risk of complications and a tougher process. Anyways, I am quite fast in learning to walk, wound recovery, flexibility and yea I was young and fit before surgery but I still struggle a lot. It’s a hard surgery and hard journey. It really is.
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OzBoy39

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Re: RLS’ Log Entries - Bilateral Femurs 2022
« Reply #15 on: September 04, 2022, 08:51:35 PM »

Man i feel for you. I'm at day 11 post surgery in Athens by myself with the G-Nail .

I was having (maybe i still do) a down moment just before because I did a bad movement after my evening clicks and again strained my quad muscle (2nd time), which now I know will delay again my stretching and PT tomorrow.

I read your previous post where you said not to quit and to keep pushing and shared your other details.

It helped somewhat. So thank you for that.
Stay strong and keep in mind the long term goal. This is a F.....g mental battle. But we'll get through it.
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Going for femur bilateral G-Nail with Dr. Giotikas.
Starting height 164cm. Goal 172 to 174cm

RealLostSoul

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Re: RLS’ Log Entries - Bilateral Femurs 2022
« Reply #16 on: September 04, 2022, 09:27:11 PM »

Man i feel for you. I'm at day 11 post surgery in Athens by myself with the G-Nail .

I was having (maybe i still do) a down moment just before because I did a bad movement after my evening clicks and again strained my quad muscle (2nd time), which now I know will delay again my stretching and PT tomorrow.

I read your previous post where you said not to quit and to keep pushing and shared your other details.

It helped somewhat. So thank you for that.
Stay strong and keep in mind the long term goal. This is a F.....g mental battle. But we'll get through it.

Thanks for the kind words. Yea man I totally understand. I strain my incision site and it hurts more making my stretching worse and clicking painful. Is that gone for you now at day 11? It’s an aching feeling when twisting my leg in my left hip where the nail came in.

I wish you also good luck, keep your head up and keep pushing. Listen to Gym motivational music and apply it for your stretching, we do this not to grow muscles but to grow height. And the more you push it with stretching the better and easier your process will be. So keep fighting!
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OzBoy39

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Re: RLS’ Log Entries - Bilateral Femurs 2022
« Reply #17 on: September 04, 2022, 10:17:09 PM »

The hip incision sites doesn't really hurt.
But I do get a sharp pain in the knee incision site when I do hip flexor stretching. Really annoying. I basically can't stretch it to the limit because of that.

My hips (especially the left one) gives me jolts every now and then if I make fast rotational movements or when I go from sitting to standing too fast or if i sit on it. It's getting better though.

Yeah I'll follow your advise and watch some good motivational video when I feel it's needed.  But I also wanted to say again that just being able to write here to people like yourself and others who are going through the same process and  exchange thoughts and words is a huge help indeed.

Let's both keep pushing through!
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Going for femur bilateral G-Nail with Dr. Giotikas.
Starting height 164cm. Goal 172 to 174cm

yerzadotru

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Re: RLS’ Log Entries - Bilateral Femurs 2022
« Reply #18 on: September 05, 2022, 07:40:35 PM »

It does feel lonely being at rehab but time will pass quick and you will be home. This is awesome diary.

Do you have to wear compression pants all day?
How much luggage did you pack? Will you be able to carry it home and via plane by your self?
It seems everything is paid for but will you need to bring extra money for other expenses?
What did you pack? Mainly just clothes and laptop? Do you to bring need soap, toothbrush all that too?
Is all the lengthening done in 1 sitting or split through the day?
How long does it take you to fully lengthen?
Is it ok to miss a day of lengthening like when we travel back home?
Are you able to leave the rehab center go into town or around maybe?
What was your impression of betz and becker? Do they seem like they put patient safety 100% into consideration?
Do you think you can study remotely during this time?
How often are you seeing betz becker at the rehab?
Will you xrays and physiotherapy be paid out of pocket when you get home or insurance?
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RealLostSoul

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Re: RLS’ Log Entries - Bilateral Femurs 2022
« Reply #19 on: September 05, 2022, 10:32:24 PM »

It does feel lonely being at rehab but time will pass quick and you will be home. This is awesome diary.

Do you have to wear compression pants all day?
How much luggage did you pack? Will you be able to carry it home and via plane by your self?
It seems everything is paid for but will you need to bring extra money for other expenses?
What did you pack? Mainly just clothes and laptop? Do you to bring need soap, toothbrush all that too?
Is all the lengthening done in 1 sitting or split through the day?
How long does it take you to fully lengthen?
Is it ok to miss a day of lengthening like when we travel back home?
Are you able to leave the rehab center go into town or around maybe?
What was your impression of betz and becker? Do they seem like they put patient safety 100% into consideration?
Do you think you can study remotely during this time?
How often are you seeing betz becker at the rehab?
Will you xrays and physiotherapy be paid out of pocket when you get home or insurance?

Hi thanks for the kind words.

- I wore them for 5 days, yes the entire day, it was pretty uncomfortable but finally got them off. Usually you wear them for a week but I have had literally 0 swelling (which is quite uncommon) and great wound healing so I got rid of them earlier. Was a relief haha
- Quite a lot. I have a big suitcase with me. Honestly can‘t tell. A lot of patients go home by plane or train by themselves so it‘s possible but I wouldn‘t be able to do it alone with that heavy suitcase. My mother is going to pick me up by car so it‘s whatever.
- No, I mean tomorrow Tanja is bringing me some groceries so for that I obviously have some cash but if you don‘t plan on that I would say no.
- A lot of clothes for the time, laptop, headphones, toothbrush set (I have had braces years ago thus still need to wear a retainer so a cleaning set for that too), razor to shave myself, an anatomy book to study, a small plushie for the mental comfort. Honestly just regular stuff, you will figure out. Soap no, toothbrush idk. I have mine. If you forget the hospital can give you one.
- this is important, you need to do it in 1 sitting if possible and always in the morning. Because then the muscles can adapt throughout the day and you can sleep well. If there is something important once that makes it impossible to do it in one setting then you can finish later (even though it’s suboptimal) but finishing the clicks is priority number 1, even if it takes 5h and you will miss pt.
- depending on how much you do it‘s 3 or 4 months.
- this is even more important, never miss out on lengthening. If you do it will be very hard the day after and you could be screwed like a few other patients I have heard of. Consolidation is like a lion that you have to run from. If it catches you you are doomed, and it’s much much faster than you think. Missing one day can be enough for you to have to redo surgery. So always finish lengthening for the day even if it takes long. When traveling home you click before you go.
- will go for a walk outside tomorrow, im looking forward for that :)
- Yeah definitely. I am honest, everyone I met here thinks highly of Dr Becker. He is a really great person and doctor. Also Tanja (his assistant) has my big respect. She helped me so much with the lengthening it‘s amazing (more on that when I update later). As of now I am so glad I did it here. Can‘t complain about anything. Betz did a great surgery, I haven‘t seen him since but he is very experienced so I definitely felt I am in safe hands. I mean you can always get yourself into trouble like the guy who jumped on a trampoline but if you stay cautious, follow the protocols and pay attention to what they tell you you will be good. Yes, to me they seem very responsible in regards to patient safety.
- yes definitely. I will be going to Uni in a few weeks too, no problem. I already feel more focused, my cognitive capacities will soon be 100% back to normal.
- daily, either him and/or Tanja when he is in the other clinic for new surgeries. You can also always reach them, they respond quickly it‘s no problem.
- insurance.



> will update and post more tomorrow
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yerzadotru

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Re: RLS’ Log Entries - Bilateral Femurs 2022
« Reply #20 on: September 07, 2022, 07:22:42 AM »

Great updates :) getting closer to when you can go home. Do you use any messenger apps we can talk on? You could message me and i can make account if i dont use it. Want to hear your progress and talk about everything LL from time to time with you



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RealLostSoul

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Re: RLS’ Log Entries - Bilateral Femurs 2022
« Reply #21 on: September 09, 2022, 09:00:04 PM »

@yerzadotru I‘ve sent you a pm

6th-10th day post op:

Hi so it turned out the way I though it'd be, the day is so packed with stuff that I barely find the time to update anymore. This is the reason why I am reporting back so late. Sorry for that. The last few days have been pretty similar. I will give a quick overview of different things.

Walking and mobilty: My walking is excellent. With crutches I can walk normal, I can even keep up with normal walking people, even if they walk fast. I can walk very fast. As an apology for updating so late I made a short video of me walking on exactly day 7 POST OP. So if you want to check it out, this is day 7 post op. On a flat and safe ground I can keep up with normal walking people. Link -> https://imgur.com/a/DaXnNj0
My mobility is getting better each day, thanks to the PT I now can move down to the floor, put on my shoes and socks by myself, pick up stuff from the floor, kneel down. Also stairs are now possible, going down is smooth, going up's still a bit exhausting but it gets better and I can now do it consistently.

Clicking: the 6th day was horrible. Right leg clicked smoothly, left leg was full of pain. Whenever I twisted it my hip started hurting from the outside towards the inside/groin area in a labor pain type style. It was pretty bad and for whatever reason emotions shot through me like I started crying, laughing, about the absurdity of the situation I am in, about the pain and the unique tingly feeling of the nail. Very weird experience. It can be compared to giving birth, well now at least I can say I am one of the few males on Earth who experienced that. Gotta experience it all, right? hahaha. Tanja told me clicking is a lot about your mind and she was very right about that. You need to not tense your muscles at all and just let your knee drop in to click. If you tense up just a tiny bit it doesn't work at all. So you need to relax and let your hand guide the movement. Big mental thing, I can understand why it's scary to some but you need to think positively about it, think of something relaxing, keep it cool and then it goes down smoothly. On the left leg it was super hard though because pain automatically means you tense up due to the (neurological) feedback mechanism of it. Tanja helped me a lot mentally and it made a huge difference. On the seventh day she built a contraption for me to click easier. Essentially we knot a band/scarf around the triangle handle thing over my bed where I could then rest my foot in the air and then click by just grabbing my knee and pulling it in instead of bending the leg and then dropping the knee. This is better because it means less movement in the hip and less rotation, it made a huge difference. The next few days my clicking got much smoother and less painful by the day, yesterday I could click both leg in 45 min, today it was 37 min. My right leg goes really really smoothly. I must say though 20 clicks a day is a lot for the body. The first click is the most painful and then after 15 it is also getting painful. After 20 clicks the legs get really heavy and feel weird, uncomfortable. Throughout the day it gets better/back to normal though.

Routine: Wake up, brush teeth, breakfast, PT and or stretching session, clicking, PT and or stretching session, lunch, short break, sometimes PT, stretching session, dinner, short break, stretching session, go sleep.
It's rough.

Pain: My pain is very low, now that clicking is better I don't have much pain anymore. The most pain I have is when I wake up in the morning (I sleep 8h, waking up 0-1 times a night). After lengthening I have slight pain and stretching also needs to hurt in order to be effective. The first 2 days of doing 20 clicks a day I had pins and needles already, on the top of my right foot. Only very subtle when I moved around but it went away on it's own after 2 days.

PT: PT consists of walking exercises, mobility exercises (learning to get up from the floor, kneeling down, etc), walking stairs and massage. The massage is to reduce tension and it works better than the muscle relaxant pills. It's really helpful and I tried booking more appointments, could only get one more though. The stretching that I have to do is really excessive though. It's like hard 1h-1h30min workouts that make you totally exhausted and that 4 times a day. It's brutal and honestly my energy is so low that the free time I have I spent just sleeping, resting, at max watch a short video in bed. Laying down feels like such a blessing because I am always so exhausted. Note; active stretching is the most important part. You need to lengthen your muscles next to the bone, else you are screwed. Your success is highly determined by stretching and they will tell you that a lot. I also noticed that in the morning before and after clicking my energy is so much better and my stretching sessions are more sufficient. You need to stretch hard, it has to hurt, and while it is uncomfortable it is also relieving because if you do it right your legs will feel like jelly afterwards and you feel lighter and more normal again. I noticed that already. As of now I have to say in the afternoon and especially the evening I am so tired I sometimes can't finish my set, or do it poorly. It's so so so so so exhausting.

Loneliness: Yea the rehab is good and PT is great, plus you have a lot of equipment to work with but the routine and not having any time, not seeing my friends and family is making me feel so lonely and sometimes I do have bad downs. I just have to push through those. It's tough though. What I also want to note here is that I am getting really annoyed by the elderly hitting me up 24/7. Don't get me wrong, I absolutely 100% understand them, they are curious why a young guy like me is here (I look much younger than 21 too), they feel lonely too, they just want to connect. I am not mad at ANYONE. However, I am talked to literally at leat 5 times a day. Usually it's always the same conversation, why I am here, if I had an accident, what surgery I had. While I am not a shy person who doesn't want to talk, I am quite the opposite actually, this is getting too much for me. Occasionally it's okay and I did connect to a few of them who were nice and not prejudiced about LL but most of the time it's just really really forced shallow small talk that I don't really need, ESPECIALLY (!!!) when I am super tired after a stretch workout or in the evening when I just want to be for myself. Like literally, they are sometimes waiting for me at the end of hallways, random people that just want to ask me why I am here, when I go to the gym (PT/stretching) I now always wear headphones (unless I meet my other LL friend) and avoid eye contact, still that doesn't stop a lot of people just saying stuff to me. I once went for a little walk outside with Tanja, finally some fresh air and green around me, we sat on a parkbench and 5 seconds later an old lady sat right next to me and started talking while I just wanted to relax for a moment and enjoy the tranquility :(. I know I know I am a bit overreacting to that but I do need a bit of time for myself and since I always stretch and train in the gym (it's just better there than in your room) I am surrounded by people a lot. Plus LL is tiring and exhausting and you feel like resting a lot, so not always in the mood to chat with someone. And hey a few days ago I had a nightmare in which old folks where crawling through my window in the middle of the goddamn night to ask me about what surgery I had. I almost thought it was real but it was just the rain pounding on the window smh. Well, don't want to sound too paranoid so let's stop talking about it xD.
Important to note; this is obviously nothing that's an objectively bad thing (of the rehab or anything), it's just super personal subjective stuff so you definitely won't experience it. The reasons I do are; I am a bit sensitive to that in general, I am really bad at dodging conversations, I am super young looking and I speak german. If one of those four things doesn't apply to you, you won't experience it for sure. Anyways part of me is now looking forward to be going home haha.

Going home: I need to check every box of a checklist to be able to go home. There are a few factors like, being able to click consistently, showing a sufficient stretching routine, being able to walk stairs, being able to sort in your meds, etc etc. First (because of stairs and initial clicking problems in the left leg) we contemplated of me staying longer but I got into clicking and learned stairs quickly in the last days so now it seems like I will go home next week. I am really looking forward for that. I think my parents will push me in terms of stretching. It is less ideal to see Becker and Tanja just via videocall but hey in those times that's not too much of a hinderance anymore, right?

What I am afraid of now: I am recovering very quickly, main reasons: young age (very important), healthy pre op, skinny (maybe a bit of luck too). While skinny is bad in terms of everyone losing weight during lengthening, it is really helpful for the process. The worst condition is bodybuilder legs. more muscles need to be stretched, tendons are shorter, it's overall tougher and for the surgery they need to cut through more. Betz and Becker told me that as well. Fat is also bad because less agile legs. I am in general very happy about my progress and so is my team but today after I requested it Becker showed me some videos of patients who had very bad duckass and wide legs and damn that looks grotesque to say the least! I am afraid I will walk like that even with IT band release and if I stretch a lot, Becker told me it's due to bone lengthening overtaking muscle lengthening which is not catching up anymore. The frontal and lateral muscle groups being too short for the femur will pull you down and lower legs out. If I walk like that though I can't leave my room, I will be like the hunchback of notre dame. So let's keep pushing the stretching sets and avoid that stuff.

Tiredness: I am so tired and exhausted the entire time. While in the past I felt sleep is for the dead and a "waste of time", and I was pushing late nighters, going out with friends and loving the night life, etc. I now go to sleep at 11 pm at the latest and sleep is the thing I look most forward too. It's so blissful to just lay down after a long tiring day. So without further ado, thanks for the reading, have a good night! See you.
« Last Edit: September 09, 2022, 09:20:38 PM by RealLostSoul »
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Limbfan2020

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Re: RLS’ Log Entries - Bilateral Femurs 2022
« Reply #22 on: September 09, 2022, 09:28:58 PM »

Hi RealLostSoul! Great diary! I wish you a fast revovery!

Do you know when Dr. Becker did his first LL surgery at the Betz Institute?

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RealLostSoul

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Re: RLS’ Log Entries - Bilateral Femurs 2022
« Reply #23 on: September 09, 2022, 09:55:06 PM »

Hi RealLostSoul! Great diary! I wish you a fast revovery!

Do you know when Dr. Becker did his first LL surgery at the Betz Institute?

Hi yes he told me once, I think he joined 5 years ago but I will ask him again. Can‘t quite remember. Stupid meds haha..
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thankscience

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Re: RLS’ Log Entries - Bilateral Femurs 2022
« Reply #24 on: September 10, 2022, 01:57:51 AM »

I enjoy reading your posts!

Your walking is very impressive with the crutches for only 7 days post op  8)

Do you normally have to use a walker to get around? Or are you already allowed to use crutches to walk everywhere?
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OzBoy39

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Re: RLS’ Log Entries - Bilateral Femurs 2022
« Reply #25 on: September 10, 2022, 06:39:16 AM »

Man you're impressive.
Your walking with crutches is really really good.

Keep on going, I think you're among the best I've seen so far in terms of recovery.

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Going for femur bilateral G-Nail with Dr. Giotikas.
Starting height 164cm. Goal 172 to 174cm

yerzadotru

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Re: RLS’ Log Entries - Bilateral Femurs 2022
« Reply #26 on: September 10, 2022, 07:13:44 AM »

Great updates your doing so good. 8) You'll be home soon and life will continue. Very soon the rehab clininc will be in the past, hang in htere. Really looking forward to reading your posts.

are those shoes they give you for exercise? they look very comfortable and nice.
did you bring compression pants? or did they give special ones?
How many days of clothes did you bring? Do they do laundry for you?
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RealLostSoul

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Re: RLS’ Log Entries - Bilateral Femurs 2022
« Reply #27 on: September 10, 2022, 06:46:07 PM »

I enjoy reading your posts!

Your walking is very impressive with the crutches for only 7 days post op  8)

Do you normally have to use a walker to get around? Or are you already allowed to use crutches to walk everywhere?

Thanks.
No walker. Didn’t even get one. I know no one who got a walker here. Crutches since day 1. That’s how I walk around everywhere. Generally for lengthening it will be like this: no crutches at home for short walks (to the bathroom eg), one crutch at safe places and when you need your other hand to hold stuff and 2 crutches in public places or outside. I already start training walking with one crutch at PT.

Man you're impressive.
Your walking with crutches is really really good.

Keep on going, I think you're among the best I've seen so far in terms of recovery.



Thanks :)

Great updates your doing so good. 8) You'll be home soon and life will continue. Very soon the rehab clininc will be in the past, hang in htere. Really looking forward to reading your posts.

are those shoes they give you for exercise? they look very comfortable and nice.
did you bring compression pants? or did they give special ones?
How many days of clothes did you bring? Do they do laundry for you?

Thanks !
- Haha no those are my shoes I bought them because they don’t have laces and I can just slip into them and they are comfortable. Honestly I could tie my shoes for myself now though.
- no they give you everything. The white pants you see aren’t the compression pants (those are black and I got rid off them at this stage already). The white pants lay underneath (apparently helped with swelling and made the compression pants more comfortable and stabled the bandages I think) and weren’t uncomfortable unlike the real black pants who were strapped up to my belly button. Anyways got rid off the white ones now as well.
- enough haha. Yea you can do laundry here but I have enough clothes so I didn’t think of that.
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RealLostSoul

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Re: RLS’ Log Entries - Bilateral Femurs 2022
« Reply #28 on: September 14, 2022, 11:20:25 PM »

Hi guys, some update. Today is day 15 post op and i drove home yesterday.

Going home: I was getting used to the rehab and I must say if you find friends there it‘s really nice. Going for a walk with the other LL patient and stretching together was really motivating. I was sad to leave my LL friend and few other friends I made there. I will certainly miss them. One of which I am hopefully going to see again once we are both recovered :). Anyways except the monotonous food I was sad to leave the rehab.
The going home was horrible. 10h drive with stretch stops every 30 minutes because the stiffness of sitting in a car for that long was getting unbearable. It was so exhausting and I just fell into my bed and slept once I arrived.

Sleep: I slept 8h, awoken thrice, once was to go to the bathroom, twice to switch positions. I can now sleep on all sides and feel like except back everything stretches a muscle group and releases some tension. Stomach-> hipflexors. Side -> laterals. I found side to be quite useful tbh. Overall I sleep better in my bed.

Uni: I went to uni this morning for 2h (with crutches obviously). It was much better than I expected. In terms of movement I could do everything, even stairs was no problem, I could keep up with the others in terms of walking. All the people there were really nice and helped me with doors and chairs etc even though I wouldn‘t have needed it haha. Quite a handful of people asked me what happened, I told them knock knee surgery, everyone bought it. A few people I know vaguely came up to me and talked to me (not only about my health) which I really enjoyed. I am used to going in alone and leaving without anyone giving a damn. It‘s nice to get a little attention after being a ghost for years.

Outside world and anxiety: Immediately after I was out of the rehab I noticed that the outside world is full of suboptimal stuff for people on walking-aid. Bumps in the street, stairs without railways, steep hills, etc. It‘s all doable but honestly fuels my anxiety, which is ravaging right now. I am so anxious of breaking something, doing something wrong, fcking something up with Dr Becker being so far away. My hypochondria is as high as ever and it takes a toll on me. I want to note here that I am very thankful of Dr Becker and Tanja responding to me as soon as possible and helping me with my nerves and answering all of my slightly stupid questions without getting mad haha. I think I will get used to this new environment with my situation.
I am also slightly anxious about encountering my neighbours at the staircase. I have to walk up to the second floor, no elevator, and I will definitely bump into some of them someday. After being to uni I noticed I can just say the same made up story to everyone but I am a bit fearful of one particular neighbour. He is old, fat long hair, never showers, creepy guy that forcefully talks with everyone and doesn‘t let them go. I hope I can avoid him but honestly it‘s up to luck. fingers crossed.

Clicking: Never would have thought that a new setting can change clicking so drastically. I had the worst clicking today. My left leg was as easy as ever (which was the tough leg before). We build a replica of the contraption I used with the same band and it worked fantastically. The right leg however (which I clicked in 7 min before) was cramping and hurting so fcking bad I felt like dying honestly. It took me the entire afternoon to do 20 clicks and it was so painful. 8-9/10 pain with every hip movement. Tomorrow I will try the band technique for the right leg.

Urology: A bit private stuff but worth noting for prospective LL patients. I have two urological annoyances. The first is due to the muscle relaxants I can‘t hold back peeing that well. I noticed that once I feel the need to use the bathroom I need to go because if not I happened to slightly piss myself. Was super awkward but hey the brightside of it is my prostate is probably not enlarged yet haha. The second one is more so putting a toll on my mental health. I am physically unable to m*sturbate due to numbness. Ever experienced SSRI induced sxual dysfunction? It’s exactly like that but perhaps even stronger. Can’t wait to get rid off the meds, especially the pregabalin.

Height: As you you can imagine I was curious to see if I notice something when I return home. Only done 1.5cm so I didn’t expect much but it was very disappointing. I actually feel shorter than pre op right now. Next to my father, at uni, at home. First I thought it’s maybe because I wear flatter shoes than usual but no it’s the same at home too where I never wore shoes. I checked if I am higher at the marks in my house but no I am actually a bit under them (like a cm or so). You may assume those marks are incorrect but no way, I measured myself a million times, even other people did. My house is full of marks and scratches like an insane asylum (leftovers from very severe height neurosis). They were accurate and I am below all of them. I think it’s because I am hunched, especially on crutches and without I can’t really stand that straight because of my back, something with the hips or whatever. I feel weak and can’t be as upright. I don’t feel I can stand that straight. So I hope it’s that and not that my nail inversely distracted and shortened the bone (haha jk). You can imagine that this was a big bummer to me. The only positive thing is I lost only 1-2 kgs instead of the predicted 6kgs but still the height is pulling me down right now.

Regrets: not regretting anything the only thing I regret is not doing it earlier. I should have done it with 18-19 and now tibias. The process drains my energy so much and I have quite the downs but I am still very happy to be where I am. Crutches aren’t annoying me at all.

Meeting friends: Tonight I met friends at a small welcome back gathering. We ate some food and played video games, it was nice but similarly to the car ride I felt the uncomfortable stiffness  crawling on me after sitting around for a while. I had to get up and stretch. Couldn’t stand still for too long. And I got really severely tired. Couldn’t hang out long into the night like before. I feel like an old person who needs to urgently rest. This kinda makes me feel depressed but it is what it is. That was part of the pact. 
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RealLostSoul

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Re: RLS’ Log Entries - Bilateral Femurs 2022
« Reply #29 on: October 17, 2022, 02:31:00 PM »

Update. 48 days post op

Hey guys long time no hear, I am currently at like 4.4cm and the reason why I didn't update this is simply no time, no energy, no motivation. I will try to do monthly or weekly updates from now on depending on the importance of new things coming up.

Let's start with the positives:
- clicking became easy and almost painless. At around 4cm it became no problem at all anymore.
- stretching became a routine and I now have a good bodyfeeling of the parts that I need to stretch. for me side is the most important followed by hip flexor followed by quads.
- I went down to 14 clicks (= about 0.72mm/day), the tension got much much better. it's a day and night difference to 15 clicks. I would say rn it's bearable. and soon I can reduce the meds finally. I had aching hip and knee pain before I reduced but now it's gone.
- my parents help me so much, when i am tired they help me stretching, they give me massages often as well. its very helpful.
- PT is 2x a week and very helpful to loosen the muscles
- disciplined stretching pays off so much. for example at about 3-4 cm I couldn't stretch the sides that much because it was so painful, I developed quite some wide legs but in the last week or so I have been heavily focusing on side stretches and I removed them entirely and I can fully close my legs while walking now. Although after clicking its always a bit worse I can revert it to 0 before the next day clicking. stretching is the most important thing and if you do it consequently you can avoid issues (same goes for duckass and frontal stretches). My LL buddy at the rehab who is stretching 7h a day can walk basically like normal during(!) lengthening at 9+cm. It's my inspiration and proof that stretching is the key to success in femur LL. i'm a bit too tired to upload a video of me walking rn but it's good. almost as good as in the beginning, but i have definitely longer legs now :).
- cognitively it got much better now even though I only got rid off pregabalin yet.
- I now see the difference in height and it's so astonishing, words can't describe it. You are a new person. I feel so much better in my own skin it's a bliss after years of misery. I am so looking forward to normal life after LL.
- I reached the 6' mark^^

the negatives:
- Number 1 bad thing is sleep. Sleep deprivation is killing me. Waking up once after 5h and then every hour is terrible and after a while it gets you physically and mentally. with 14 clicks it's better but still... you need to go to pee, you need to stretch hip flexors at night... it sucks.
- second worst thing is meds. I want to reduce them now because I feel it in my entire GI. I feel nauseous often, I can eat little, I have soft stool and stomach ache. It's eating me up. And yes I obviously take stomach protectors, it's just too much after a while.
- before I reduced to 14 clicks I felt the muscles pulling on my hips and knees and damn that pain is terrible. the broken bones feeling is 99% suppressible with pain meds but for that pain meds do barely anything. it feels like being stabbed with a knife tbh. thankfully its gone now that made sleeping impossible. stretching helps with that too btw but not immediately like with tension, it's multiple sessions to get it down.
-> rather just take the 14 clicks, although it sucks to think that the process will now take almost 2 weeks longer. but it is what it is... important advice!!: don't count down the days, if you have to slow down they add up again which is terrible for the mindset. just take it day by day and don't think about when exactly the end will be.
- 4h of stretching everyday is a lot of work and still really tiring and monotonous. although now my parents build a contraption where i can roll a table over my bed and use my pc in bed. so after clicking and stretching sessions in the morning I play WoW in the afternoon and evening. it's like a few hours of the day escaping from LL, best thing for mental balance. plus meeting friends once a week is a relief. I would recommend everyone to get something you look forward to everyday in what you can escape mentally for a while.
- My sexuality is still not even remotely close to normal. I thought it's the pregabalin but no... Maybe it's the combination of all drugs, plus body's in healing mode, not eating enough, bad sleep etc. Well, I accepted being impotent and unable to beat my meat (it's like a soft noodle) for the lengthening now. I hope it returns quickly after I am done here though.
- uni is impossible lol. I don't know who can work or study during femur LL, it's impossible. I don't have the time because of the stretching, no energy because of the sleep and meds. Becker thankfully wrote me a confirmation so I can push all exams of this semester to the next. That was a relief, now I can focus on recovery entirely.
- sometimes i am regretting not doing tibia. tibia patient has much less pain after 2-3 weeks, can already walk without crutches while i will have to bother with that for quite some months, no duckass wide legs to fight, much less stretching to do, less clicking struggles in the beginning etc etc. if you want an easier process do tibia. i will at least have it easier for my potential second LL somewhere in the future :). I will definitely go to becker / betz again btw if I want tibia, but first I will want to recover fully and live life a little bit. I am thinking about maybe tibia 2 in years... who knows. let's take it step by step....
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ten

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Re: RLS’ Log Entries - Bilateral Femurs 2022
« Reply #30 on: October 18, 2022, 07:39:43 AM »

did you try reducing the pain meds? do you really need them?
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