Hey guys,
While I wasn't planning to start a diary before this procedure, I feel the need to do so now as my way to give back to the forum. This diary won't be as detailed as some of the great ones, like IFS's diary, but I will try to update on new developments and answer questions you have, so long as I find them appropriate.
My stats: 5'3, male, 145lb. Stryde nail size used is 11.5, which is one size larger than the smallest size of 10. I hope to achieve 3 inches.
So, I had surgery on Monday and was discharged Wednesday. After waking up, I felt no pain and was still under anesthesia. There are leg pumps on each leg used to circulate the blood in the legs so as to prevent blood clots. An additional device is placed on each leg which bends the knee slowly throughout the day. This device isn't on all day unlike the pump, but is used for about an hour and half each time, 2 - 3 times a day. I have had no problems with sleep so far. I have been averaging about 4-6 hrs at the hospital, and that is because of nurses constantly talking by my room and waking me up for meds or to take blood. Now that I am home, I sleep 6-8 hrs every night and wake up not because of pain but to empty my bowels or because of discomfort from laying in the same position.
For what its worth, I am quite used to sleeping on my back for prolonged periods of time, though it does get quite annoying at times.
In the hospital I barely took any oxy. On day 2 after anesthesia wears off, I think I took about 2 or 3 oxys, and that wasn't because I had pain but it was because I was afraid of having some and therefore tried to keep ahead of the pain. The PT came in at 11 am and I had prepared in advance by taking 2 oxys. This is where I was to get up and take about 10 steps. As soon as I sat down on the bed with my legs on the floor, I immediately felt nauseous, to a point where my color changed. I was seconds away from vomiting but this subsided quickly when I was allowed to get back in bed. The PT came in again at 4 pm, but this time I had taken only 1 oxy, and also anti-nausea medicine through the IV. I was able to get up and take 10 steps, but as soon as I finished, I felt immediately nauseous and got back to bed. The pain was about a 3 while walking. The first thing you notice when waking up from surgery are just how heavy your legs feel, its as if you have 100lbs on each of your legs accompanied with pain and discomfort when moving them. Because of the nausea during this 2nd PT, I had not technically cleared PT in order to be discharged. I knew I had to do better the next day to be able to get a discharge, so as not to incur an additional nightly hospital stay. I know this question will come up so here is the response: my insurance did NOT cover any of the fees except for routine medication, wheel chair rental, walker and crutches. I will not list what I have paid but can say that the prices listed on this site are more or less accurate.
Thus the following day I had prepared in advance. I took 1 oxy, anti nausea medicine and also sat up on the bed in upright position throughout the day. I did some minor stretches also which the PT gave me the day before, including the heel slide, etc. This PT session was a success and I was discharged as planned. After you get dressed, they roll you down on wheelchair and then you get into the car. I had taken an oxy beforehand because I knew getting into the car would be painful, I was right. Id say the pain jumped to about a 5 during one wrong movement when getting into the car, but it quickly subsided once I positioned myself properly. Got home, got into the bed and rested the rest of that day without doing any PT because I was already exhausted from all the PT in the hospital and the struggle with getting into and out of the car. I actually had 2 PT sessions on the day of discharge, 1 was to learn to use the walker and the other was for the crutches only.
That night I had my regular of about 6 hrs of sleep and just woke up once at night because of discomfort due to sleeping on my back. But I was happy that there was no longer nurses talking near me or other noise that interrupted my sleep. Pain that day was anywhere from 0 at rest to about 2 or 3 when doing PT. I am doing PT on my own at home and just following the exercises given to me by my dr. You can find some of those in IFS's diary, if you want specifics.
I started officially lengthening yesterday, the sessions aren't painful but I found my left leg to react adversely after the day's session. I have a dull pain in that leg of about a 3 with no oxy in my system. Pain comes down to 0 after one 5mg oxy. The right leg has no pain whatsoever during rest and during PT it jumps to about 2 with oxy. The left leg during PT is at about a 4-6 without oxy. I guess its worth it to mention that I have high pain tolerance just based on my knowledge of how my body reacts to surgeries I had in the past. I will not specify what those surgeries were, because that is irrelevant for our purposes here.
Today has been relatively painful for my left leg, mostly because I did NOT use any oxy this morning when doing PT. The reason for that is I had severe constipation. I had not taken a poop since morning of surgery, and today was day 5. I was afraid to take more pain meds because I knew that would make the constipation worse, so I sucked it up and did some exercises, though not as successfully as I would have liked. Long story short, I resolved the constipation this afternoon and immediately took 1 oxy to do PT. The pain went down to about a 2 for both legs and I was ecstatic to be free of that burden. My left leg also feels tighter when I walk sometimes. I get a tightening behind my left knee, as if a muscle is bulging out. I had a family member massage it after I got on my stomach so that helped. Frankly I am concerned about it and expect things to get worse. I will keep my eye on it as things progress. I also don't want to jinx my right leg and I expect things to worsen significantly on that front as well. Will keep you updated of major developments.
I am using strictly the walker right now, I don't feel confident to use crutches at this time. I can fully weight bear and standing on my legs is not painful at all. Pain only starts when actual steps are taken. While I can technically fully weight bare, I do not do so when taking steps and try to re-distribute some of my weight to my upper body.
Anyway this is it for now. I am due now for another PT and my last lengthening for the day. I still cant believe I actually went through with this procedure, sometimes it feels surreal. At the same time I am glad to finally put it behind me because ive been carrying the weight of this surgery with me for the last 7 or so yrs. Lets see what the future holds...
Let me know if you have any questions.
Rozbruch- Internal Femurs with Stryde
Thanks IFS, I knew you would be the first to comment on my diary and I am very happy about that my friend! I will certainly follow your recommendations.
Actually I have a question for you and of course others who read this: I just finished lengthening for the day and I'm sitting on my bed looking at my legs. I can't help but feel and it actually appears to me that my left leg is longer than the right. Mind you, I have no pain whatsoever in my right leg while the left one has some pain after lengthening. I am concerned a little, though I know I am not sitting on the bed all that straight. I guess the best way to get a grasp is to lay flat and have a family member take a look. I don't remember from your diary but did you experience something of this sort? I am seeing dr R in about 10 days and I'm concerned that if I continue this way for another 10 days and if my right leg isn't lengthening, it may consolidate by then.
Quote from: InFullStryde on May 19, 2019, 02:47:24 AMHi Tiggy... I'm messaging you from my phone so excuse typos. I am almost 100% sure that this is an illusion. Mark a point on your leg that is symmetrical such as on your knee...line them up. I would always be positioned off center on my bed and would think the same thing as you. I can remember when I first started to lengthen I was paranoid about everything. Dr. R tests the nails and lengthens you a full millimeter while you're in the O.R...this ensures that you're nail is working and gives you separation that you need. Also... the bone callus isn't rushing to your leg yet. You wont consolidate in 10 days from now. Monitor closely.
Also I reccomend that you buy a stadiometer to measure your height gain. Please see Amazon for this. The one I use is called:
Seca 213 Portable Stadiometer Height-Rod
It was nice to be able to keep tabs on my actual height gain without having to visit the doc.
Your post definitely set my mind at ease IFS, thanks for that. I didn't know dr R lengthens the nails 1mm in OR, thats so good to know. Its astonishing how 1 leg can feel pressure and pain after lengthening but the other has absolutely no response and feels normal. I am sure more surprises will come as I dive deeper into the process
Thanks for your well wishes guys, I truly appreciate them and it certainly feels good to share this experience with you. I was in your same shoes before surgery and I know how desperate it feels sometimes to read a new and recent diary.
I was asked above how much surgery cost, as I said earlier I am not giving out numbers mostly because I don't know them myself yet. So far I have spent over $100k and still waiting for my anesthesia bill. As I said earlier, refer to the prices posted on this site, as they are relatively correct. The final price will vary based on whether your insurance covers all, none or some of the cost of the procedure, how long you are under the anesthesia (since the longer the surgery lasts, the higher the bill for anesthesia), meds, etc. It is meaningless to talk exact numbers. With dr R, you must plan to spend about $120K or so, in the event the insurance covers nothing. You should always plan for the worst case scenario because the last thing you need is worrying about money when you should be fully committed, both mentally and physically, to recovery.
As mentioned earlier, I would like to achieve 3 inches, but again I will only go as far as my body tolerates and so long as dr says its safe. I don't believe in setting goals for this procedure and achieving them no matter what. I think safety must always come first.
Todays updates so far:
I went to bed late last night, it was about 2 am. I took an oxy when in bed because my left leg was in pain, about level 4. I slept without interruption and woke up by my alarm at 830 am because I had to lengthen at 9. I was definitely sleepy and could have slept at least another 2 hrs. I am lengthening 5 times a day right now so I have timed the sessions in intervals: 9am, 12, 3, 6, and 9 pm. The lengthening sessions must be completed by midnight. On Tuesday I will start lengthening 4 times a day and so will start my first lengthening for the day a little later which would give me more time to sleep, this is assuming nothing else happens that prevents this from happening.
Today is day 3 of lengthening and I did wake up with tighter legs that need more warm up than usual and I expect this to get worse. As soon as I woke up and slightly moved my left leg, the pain kicked in, right now its at about a 1. I haven't taken any pain meds yet but PT is at 12pm so I will be taking an oxy at 11am in preparation. Not sure if I said this earlier but right now I do the PT on my own but I have contacted a private therapist to come in next Saturday. He was recommended by dr R and at this time I mainly want him to watch me perform exercises and correct my posture, and maybe add couple more exercises. I don't know if I'm pushing myself enough right now but I was planning to take it easier the first 10 days or so post-op just to give the body time to adjust to the impact of the procedure, especially since I have the luxury to do that now more than I will later as tightening significantly increases with each lengthening.
One last thing just to get this out of the way: when I was on the forum reading diaries, I couldn't help but feel and wonder whether it was a real patient diary. For this reason I am attaching the photo of my room on day of discharge. I may share X-ray photos in the future but for now this should at least make you feel more confident in this diary
Quote from: TheAlchemist on May 19, 2019, 05:02:38 PMTiggy,
Couple of questions that I'm hoping may be able to help me manage leading up to my CLL.
1) How old are you?
2) How did you balance your career with this procedure? Did you have to take a leave of absence, quit your job, etc.
3) Have you told family, friends and co workers?
4) I know you mentioned you have family with you, but have you needed to hire an aide/helper through this process or do you have all of your needs met through family support?
Thanks!
Hey Alchemist,
Sure thing:
1. Im 30
2. I am a student so this is summer break for me. I also quit my part time job.
3. Only the closest people to me know about this procedure. I do not care to tell anyone else because I do not owe anyone an explanation, unless my life decisions somehow impact them. If they notice the height change and make a comment, I plan to say Ive tried HGH and it worked for me. If they don't buy that explanation then its their problem, not mine. I am pretty certain the people I know don't even know LL exists anyway, so it should be pretty easy to sell the HGH explanation.
I see many people on this forum worry about what others will think. However, I was never that type of a person. I always did what I thought needed to be done and I knew that people who truly loved me would still be supportive even if they didn't share my views. All others do not matter at the end of the day. So my advice to those struggling with this is to follow what you believe is right. If others refuse to understand or otherwise condemn your choices, you should feel lucky to know who those people truly are and distance yourself from them. Its very simple really.
4. I have all my needs met through family support. I did not hire an aide because I'm staying with my family throughout recovery, so there is always someone near me. However, you absolutely need someone to be there for you and help. I can get up, fully weight bear and move around fine but even despite that I can't imagine cooking for myself or even transporting a plate from the kitchen to my bed, which is about 30 steps. So make sure there is someone there at least in the beginning. I will update the forum as to when I think I could be fully self sufficient when that time comes.
Quote from: PANDA:BEAR.. on May 19, 2019, 05:56:38 PMHi.. tiggy, congratulations... your in safe hands a brilliant doctor...
I'm looking forward to your future posts ..
Panda 
Thanks Panda
Thanks for all your kind wishes guys, feels very nice to read words of encouragement from you. Stay tuned!
Kendra, dr Rs fees are about $75k but that does not include hospital fees and anesthesia. All of those are separate charges and if insurance denies them, you will be responsible. I can't recommend anyone below $80k in US because I am not familiar with their fees. Perhaps dr Mahboubian may be a good fit. You should research this site for more details into his fees or those of other surgeons. I did not consult with any other dr aside from dr R before my surgery so I can't comment on other drs, sorry. Good luck
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