Posted on Aug 30, 2022, 9:52 pm
#1
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!
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!