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Author Topic: Top 10 Manifesto from my LL journey in 2018  (Read 329 times)

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drvbmc

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Top 10 Manifesto from my LL journey in 2018
« on: August 15, 2019, 02:14:33 AM »

I have decided that the best way for me to share my experience of this amazingly rewarding and challenging journey is through writing a top 10 manifesto that I learned from this journey. There are many good quality journals out there, so this will be a better way for me to share my knowledge and experience.

As a background, I am a 42 year old medical doctor from Canada. For the same reasons as many in this forum, I decided to undergo LL after a significant amount of research. I credit this forum as my inspiration, and in particular, the diary of iamready as my main source to get me started. I was then lucky enough to have phone conversations with three patients who have previously had it done.

I finally had my procedure done on March 29, 2018 by Dr. Mahboubian in LA. I had a bilateral femur osteoplasty with the internal fixator - Precice 2 nail. I lengthened a total of 6.35 cm (2.5 inches), which was my exact initial goal. I am slated for rod removal on August 15, 2019, which is tomorrow. My height increased from 5’4.5” to 5’7” (or 163.5 to 170 cm).

Other than my family, my supports through the process were LAGrowin, fallen774, and Short2tall. A big shout out to these 3 LL warriors – we really helped each other to get through this. We have all met personally after surgery, and stayed in touch through a chat through the whole process.

 A final word about my activity on this forum. I plan on posting this, and I will NOT be active after that. I am too busy to watch this forum at this stage. If you are a very serious potential patient who wants to get some advice from me, please pm me, and I will try to take the time to respond. I will not respond to those who do not have a serious plan to have this surgery done soon. For those who require proof that I actually had this done, I can be verified easily through my LL warrior friends. If you still don’t believe me, I really don’t care. I stand to gain nothing by writing this forum – this is my way of giving back to a community that gave me so much. Also, my thoughts represent my experience only, but are backed up by 16 years of medical knowledge. My thoughts may or may not be consistent with other thoughts on this forum, since all of our experiences will be unique.

Without further adieu, herein lies my top 10 manifesto.

1.   Prepare well in advance
One of the ways that I have been able to achieve success in life has been through consistent preparation. I tried to accomplish 3 things for my preparation, and I found 1 common way of accomplishing all 3. I wanted to become more flexible, I wanted to drop weight to lower strain on the rods, and I wanted to become more head strong to withstand the mental stress of what was to come. The answer to all 3 was to do yoga. I ended up doing yoga 3 times per week for almost a year before the surgery (in retrospect, 6 months would have been enough). I surprisingly started to enjoy yoga, and it really accomplished the task. My first few weeks of lengthening were much smoother with my better flexibility, my lower body weight allowed me to stand unsupported on both legs, and my mental strength allowed me to better control my mind during difficult times.

2.   Do your research
I am sure this goes without saying for the people who scour this forum for advice and insight. The main thing that I would add is to try to arrange a phone call with a prior patient. I spent years lurking on the forum, and yet, I still lacked the courage and confidence to proceed. What really got me to move forward was a full conversation with a prior patient. I learned that totally normal people just like me do this, and can successfully get through it. I realized that as long as I plan and prepare, that it can be done successfully. That phone conversation was the final push that I needed to take the plunge.

3.   Find a doctor who lets you lengthen at home
I have 2 children, so the only reason I decided to pursue this was to find a doctor who would support me lengthening at home. Thankfully, Dr. M supports this, and this was the biggest reason that I chose to go with him. I stayed in LA for 3 weeks and then fly to Canada at the 3 week point. I was able to do the whole process thereafter in the comfort of my home. I did have my parents stay with me the whole time to help me and my children. The number of advantages that this brings are innumerable. I had support, I had all of my personal belongings, my own bed, my friends, and mostly, I was able to see my children. This process is stressful enough in the most ideal conditions; do everything you can to make it easier and more comfortable.

4.   Create a support network
I strongly feel that you should tell as many close people around you what you are doing, and deal with their initial reactions in advance. I was petrified to tell my family and close friends, but I learned very quickly that their fears and shock soon turned into support. In fact, 100% of the people that I told supported me, and understood why I chose to do it. There is no doubt that humans survive and thrive better in a supportive environment. I personally do not think that I could have gotten through this without the help and support of my parents in particular. This is from both a physical and emotional perspective. I am aware that some of my close confidants went through this without telling their loved ones, and I respect their decisions. I also feel that they had to call upon much deeper inner strength to get through the same task. Don’t make this any harder than it needs to be!

5.   Do not underestimate this process
Overall, I think I had a very successful lengthening. Despite saying that, my ride was no walk in the park. Along with all of the challenges of a typical lengthening, I also had a post op urethral stricture, a post op bowel obstruction, sleepless nights, bouts of depression, and a lengthening machine that stopped working at one point. Despite all of the challenges, going through it was worth it, since here I am a year later, and I am happier than I have ever been, and don’t regret it. My happiness is firstly because I did not overestimate the impact it would have on me. My height increased from 163.5 to 170 cm. Basically, I went from being a really short guy to being a short guy. I know that I am still short when I walk around. I did not expect that the surgey alone would completely alter my life for the better. I used it as a catalyst to make the right changes in my outlook to improve my confidence, and gain perspective on what I want in life. Similarily, I never underestimated the challenge that I would have to face. I knew that this was going to be f*&^ing hard. Therefore, no matter what curveballs this process through at me, I was ready for it. Having said that, I did not anticipate the significant mental side of boredom and depression that would come from months of not working and my near absent social life. I also significantly underestimated the difficulty of walking again after I had consolidated. In your estimations, I would use a ball park of 2.5 days of recovery per mm lengthened before you can correctly walk again. Eg. I lengthened 63.5 mm, and it took me 159 days (or 5.3 months) to actually be walking again reasonably. I am sure this will reduce for those getting Stryde, which is the topic of my next point.

6.   Mobility is the key to good recovery
The one aspect that I was most proud of through my lengthening is that I stayed as mobile as possible. This was due to a couple of reasons. First, I lowered my body weight through no weight training, and doing yoga, so that I was very lean going in. Luckily, I am lean to begin with, so I came into this at about 140 lbs. I knew the precice 2 rods could hold up to 75 lbs each, so at less than 150 lbs, I could stand unsupported as long as I evenly distributed my weight on both legs. Note that I also lost another 20 lbs during the lengthening from muscle loss (it is common to lose a fair bit of muscle), so I felt no issues with standing as it went along. The other reason I stayed so mobile is that mobility became my mantra. I told myself that as long as I stayed mobile, that I will get through this safely. PT and stretching obviously happened daily, but mobility was my #1 strategy. I would do sit to stands from bed to standing. I would stand unsupported while I brushed my teeth. I used a standup shower all by myself. I bum shuffled up and down my stairs 6-8 times per day. I would walk with my walker constantly. I never used a transfer board for any reasons. The list goes on and on. I basically tried to move around mimicking daily life as much as possible, while being safe to protect the rods. Given how mobile I was, I was actually quite surprised to see how difficult it was to walk once medically cleared, but ultimately, this just took a few extra weeks, and I was off to the races.

7.   PT should be gentle
This will likely be my most controversial opinion for the manifesto. The common consensus in the lengthening community is that you must aggressively and painfully stretch the body on a daily basis to get through LL. My 3 LL warrior friends all used this method, and had very successful lengthenings, so I am not disputing that this is can be a successful approach. I also engaged in painful and aggressive PT for the first 3 weeks while I was in LA, and holy  , was it ever tough. I then had a fair bit of time to research human physiology, and reflect on the impact this was having on my body. After a fair bit of research, and long discussions with my PT in Canada, I concluded that this approach was harming my body. In fact, I eventually found that the painful stretching of my muscles set me back, and it took me 3 weeks to undo the damage to my quads and hip flexors that had been inflicted. My PT and I eventually agreed that mobility is the most important goal for success, and that all stretching should be slow and within tolerability for the body. For the remainder of the process, I NEVER did any stretches that made me cry or scream in pain. My strategy was to heat the muscles with a heating pad, high quality massage rubs and a long self-massage, followed by slowly stretching the muscles while listening to calming music, and employing deep breathing. This would calm my nervous system, and allow for a deeper stretch, which I would continue until my system would accept no more. The basic premise is that if you put someone into pain, their body will activate the sympathetic nervous system (fight or flight system), and the muscle will go into a reflexive state of contraction. You are essentially stretching the muscle against its will, and subsequently inducing hypertonicity. On the contrary, I tried to keep the tone of my muscles low by eating well, keeping my stress low, massaging my muscles, listening to calming music, and gentle stretching. Ultimately, this strategy worked well for me, since I did not go through nearly as much pain as others do, and today, I can proudly state that my mobility is amazing, and my flexibility is as good as anyone else I know who has lengthened. It is up to you which method you use, but this method worked very well for me, and was based on my knowledge of human physiology, and numerous discussions with high quality physiotherapists.

8.   Sleep is crucial
One part of this process that I was dreading was the unavoidable sleepless nights that many people described. I know how valuable sleep is to human recovery, so I made sleep a priority for me in my planning process. Although I normally avoid medications of any sort, I felt that this was not the time to stick to that hard line. As such, I did whatever it took to knock me out at bedtime. In general, my bedtime routine consisted of the following: I would start my routine 60-90 minutes before I wanted to fall asleep. I would start by taking a medication/herbal cktail that I will later describe. On many nights, I would drink a half to full glass of red wine, which tends to help me sleep. Then, I would do a long gentle self-massage with soothing oils and gentle yoga stretching while listening to calming music with minimal lights on. I would then sort out my extravagent layout of pillows so that I can shape my body into whichever position was going to be the most comfortable for the evening. 4-5 pillows was often required. I would then turn off the lights and go to sleep. Thankfully, I got 8/10 sleep on 70% of the nights, 6/10 sleep on 20% of the nights, and 10% of nights that were just bad, and could not be avoided. My medication cktail was zopiclone 7.5 mg, flexeril (cyclobenzaprine)10 mg, kava - 1 capsule, and a drink of chamomile tea. I would sometimes add ½ to 1 norco for sleep depending on the degree of pain that I was in. I tried a benzodiazepene called temazepam for a short while, and had awful rebound anxiety, and stopped it after a few days. I never withheld painkillers at any phase, and had absolutely no troubles with addiction to medications, and was completely medication free early in to consolidation. 

9.   Consider vitamins and supplements
My medical specialty is the combination of western medicine with vitamins, minerals, and herbals. I have made a career out of managing these combinations for patients. I could talk about this topic for hours, but I will simply describe the most important supplements that I included with my regimen. I took vitamin D 5000 IU per day, multivitamins 2 twice daily, multiminerals 2 twice daily, omega 3 – 2-3 grams daily, and kava at bedtime. I also administered IV vitamin C – 25 grams 1-2 times weekly. I know the IV will be difficult for most to obtain, but there is great research behind the effects of vitamin C for collagen production, and I had easy access to get this IV done at home. I also recommend cannabis for calming the nervous system, pain control, and stimulating appetite. Dr. M commented that I had one of the fastest rates of consolidation he had ever seen, and I attribute this to lots of mobility, and the supplement regimen that I was on. As such, I had to lengthen often at 1.3 mm per day to stay ahead of my consolidation. Note: The above is not intended to be medical advice. Please consult your doctor before taking any supplement or medication regime.

10. You can come out of this with 80% or better function
I told myself before this journey that if I can get 80% or better function, than I am willing to do it. Of course, I did not know if this was actually going to happen, but I took a calculated risk. I can gladly say that my risk paid off hugely. I can easily say that I am 80% or better function, and I think I will improve another 5-10% after my rods are removed. I was previously a single digit handicap golfer, and my golf game after surgery has never been better. I hit the ball further, and I still have the same touch around the greens. I continue go on the ice to coach ice hockey for my kids. I hike mountains that my friends can not handle. I mountain bike just like I used to. I will say that my running is not nearly as good as it used to be, and therefore, I don’t play ball hockey anymore. This is a trade off that I am willing to handle. As for women, my added height and confidence have helped tremendously. As a newly divorced guy, I have slept with more women in the past year than I have in the 41 years that preceded. As long as you don’t underestimate the challenge of this process, and you take the time to do it properly, you can come out well, and the payout can be very big.

I hope this list helps some people to make their decision. As stated above, I will not be checking back to reply to comments on the forum. If you are seriously contemplating this procedure, and are planning to pull the trigger in the near future, I will accept a pm to answer any specific questions that you may have. Good luck. We are all LL warriors!
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LL March 2018 with Dr. Mahboubian
6.35 cm internal femurs with Precice 2
163.5 --> 170 cm

massco

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Re: Top 10 Manifesto from my LL journey in 2018
« Reply #1 on: August 15, 2019, 03:38:13 AM »

Hello,

Thanks for posting this information. Very useful and precise.
Is there any specific reason why you decided to lenghten no more than 6.5 cm?
¿ Proportions? ¿ Recovery Time? or any other reason why you didn´t go for an extra cm or the whole 8 cm?

Thanks.
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Canon

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Re: Top 10 Manifesto from my LL journey in 2018
« Reply #2 on: August 15, 2019, 03:33:47 PM »

Nice post! Very informative.

How do you feel now with 1,70cm? I am sure there is a difference in your perception now and do you think of doing another lengthening that would bring you somewhere to 1,77. With shoes this would be 1,80.
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JsElysianEagle

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Re: Top 10 Manifesto from my LL journey in 2018
« Reply #3 on: August 15, 2019, 09:58:57 PM »

Excellent advice and notes - thanks for sharing! And wish you the best goin forwards.
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