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Author Topic: LL with Dr Rozbruch 2017-2018  (Read 13206 times)

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bigdreams55

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LL with Dr Rozbruch 2017-2018
« on: December 25, 2017, 08:06:28 AM »

Hey everyone! First of all, I want to thank 6ftsoon and ShortLivesMatter for documenting their LL experience with Dr. Rozbruch, it made preparing for my own surgery much easier.

So I am a 30 year old who just had LL with Dr. Rozbruch in NYC Dec 20th. I wanted to have this surgery since I was in college, but at the time external fixators made the process seem brutal. Now with internal devices (and plenty of time to save money for this) I felt that I could take on this challenge and burden in life.

I had my consultation with Dr. Rozbruch in October and his psychiatrist in November and was approved for the surgery in December. I also had a consultation with Dr. Paley back in December 2015, but I wasn’t sold at the time.

The few days before surgery were some of the scariest and anxious days of my life. I knew I was making this great big decision for me that I thought was best, but you can’t help but think about all the what ifs, especially with an elective procedure. At the end of the day, I knew I would regret not going through with this for the rest of my life, and the fact that I had done so much research and had acted to optimize my living situation gave me some sense of ease. Although I have family and friends, I really can’t imagine asking other for help post-surgery, so I wanted to be as independent as possible. To prepare I got a $600 ultra-light wheelchair that had quick release wheels and a folding back that I could use to easily transfer into a car by myself, and I got an ADA compliant first floor apartment on a six month lease with lower countertops, wide doors and a walk-in shower. A little overkill maybe, but I planned as if I would be a paraplegic for a few months.

On the day of surgery, I checked into the hospital on the first floor on an ipad and they direct you to the fourth floor where you are prepped for surgery. I had a surgical assistant shave my legs, a few nurse check my history and vitals, an anesthesiologist describe the sedation and spinal epidural and finally, the legend Rozbruch came in to calm me and discuss some final details about the operation. Before you know it, I was sedated and wheeled off into the OR and next thing you know you’re waking up in recovery!

When I woke up, I had no feelings in my legs and there was a CPM device hooked to my right foot (doing passive extension of the knee up to 90 degrees). I spent the next few hours just being thankful to be alive. The anesthiologist came in to see me and I told him how surprised I was that there was no pain and he told me he had used an extended release numbing agent that numbed my lower body for the next eight hours. Eventually when the feeling came back to my legs and I could wiggle my toes, the nurse cleared me to move rooms from recovery. The pain was minimal, 2-3 out of 10, when feeling re-emerged. The next day, the epidural was removed but the pain was still only a 3 out of 10. I just watched tv most of this day, did some stretches and Dr. Rozbruch came by to tell me the operation was a complete success. What a relief! I also stopped taking oxycodone on this day, bc it was messing with my head and I value being able to think clearly. Even without oxycodone, the pain was only a 2-3 out of 10.

The third day, the dressings were removed and I was cleared by PT to use a wheelchair/walker for mobility. Even without painkillers, I managed to pass PT. I think this says a lot about Dr. Rozbruch surgical prowess or my tolerance for pain (likely the former). I will say this though, my legs were extremely stiff. To move around I had to use my arms to guide my legs to where I wanted to go, and I move extremely slowly. Scooching around bed was a pain and I could not do leg raises. I hear that this is mostly post-surgical swelling and inflammation and will certainly improve in the coming weeks.

The most painful part of the process so far was the drive home from NY (2-3 hour drive). For all future-LLs with Rozbruch, try to stay in NYC for a week or two before taking a long road trip. My ass was on fire and pain shot up to a 7 out of 10. Again, I wasn’t on oxycodone and maybe that would have helped. When I got to my apartment, I was so desperate to stop the pain, I tried to find the painkillers (I picked up my prescription from the local CVS in NYC), but it wasn’t there! I called the CVS irate, but they said the hospital never called in a prescription for that. Although HSS in NYC is a good hospital, it’s far from perfect. I had to call the physician on call (it was a Saturday) who had to investigate the incidence and it turns out the nurse at the hospital failed to call it in. The on-call physician forwarded my prescription to a local pharmacy near me and I had a friend pick it up. By the time I had a narcotic in my hand, the pain had subsided so I decided not to take it. I’m proud to say I stopped taking oral painkillers on day 1 post-op with Dr. Rozbruch!

I am now day 5 and just started lengthening today, first session by myself. Pain is maybe a 2 out of 10 but there is a lot of stiffness. My only complaint is I can’t scooch around bed and lift my legs as easily as I thought I would be able to. I hope it becomes easier after a few weeks as the post-surgical swelling subsides. I’m in good spirits and excited to see where this goes. I really don’t know how much I want to lengthen, min I would accept is 5 cm but obviously I would prefer 8 cm, but I may end up settling between 6 and 7 cm.

Again, I’m early on this journey, and plenty of issues and complications can come up, so I hope and pray things go as smoothly as they have so far. I wish the best to all former, current and future LLs.
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ShortLivesMatter

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Re: LL with Dr Rozbruch 2017-2018
« Reply #1 on: December 25, 2017, 10:43:30 PM »

Hey bigdreams! Glad to hear you are doing well after the surgery.  I had the same feeling prior to my surgery, I knew that I would regret it for the rest of my life if I didn't go thru with it so there was never a moment of doubt for me.  I can't believe they forgot the oxycodone prescription, how the hell did you survive the ride home and the day after without any painkillers? That's hardcore and pretty impressive.  Yeah it's quite hard to move around right after the surgery but it's all downhill from here, the worst part is over. Things will get easier and easier as each day passes.

Good luck man, be diligent with those stretches and try to keep your legs straight. 
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Android

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Re: LL with Dr Rozbruch 2017-2018
« Reply #2 on: December 26, 2017, 06:34:20 AM »

Hey Bigdreams, just wanted to say that I really enjoy the detail of your diary, thanks for sharing. What's your current height?

Best of luck, keep us posted!
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5'4" and 1/4" (163.2 cm) | United States | early 30s | Cross-lengthening with Dr. Solomin & Dr. Kulesh

Zeo

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Re: LL with Dr Rozbruch 2017-2018
« Reply #3 on: December 26, 2017, 06:34:37 AM »

Hey thanks for sharing your experience, it's very interesting that they decided to use a cpm machine, I've seeen it used in total knee arthroplastys post op to prevent stiffness, makes sense to use for LL. If yu don't mind me asking what was a duration of cpm therapy, 2hr a day twice a day? And it was used on both legs I'm assuming? Does Dr. R do this on everyone or just you?

Also of course I have to ask about insurance, did they pay anything, if so what was left for you to pay and what insurance was it?

I'm sorry I know it's a very intrusive question but it really helps and I'm sure it's the number 1 question people have.

Anyways God Speed brother I'm excited to read about the rest of your journey, your in good hands
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I will be grateful for this day. I will be grateful for each day to come.

LAGrowin

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Re: LL with Dr Rozbruch 2017-2018
« Reply #4 on: December 28, 2017, 06:19:10 AM »

Hi bigdreams55.  Awesome to read  about your LL journey.  Hope that you are able to reach those 8cm without major hurdles.   Congratulations.  Keep us posted.

All the best.

I'm scheduled for 1/18/18 with Dr. M in LA.

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bigdreams55

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Re: LL with Dr Rozbruch 2017-2018
« Reply #5 on: December 28, 2017, 06:26:43 AM »

Hey bigdreams! Glad to hear you are doing well after the surgery.  I had the same feeling prior to my surgery, I knew that I would regret it for the rest of my life if I didn't go thru with it so there was never a moment of doubt for me.  I can't believe they forgot the oxycodone prescription, how the hell did you survive the ride home and the day after without any painkillers? That's hardcore and pretty impressive.  Yeah it's quite hard to move around right after the surgery but it's all downhill from here, the worst part is over. Things will get easier and easier as each day passes.

Good luck man, be diligent with those stretches and try to keep your legs straight. 

Thanks buddy! I am in debt to you, you provided some great information for me as I was preparing for this. I hope to hear you are walking unaided soon!

And I wasn't trying to be tough, but narcotics make my mind seem cloudy/fuzzy which I really don't like.

You were right btw, every day just gets better and better. Today, I am a 0-1 out of 10 pain-wise and I almost stood up a few times without a walker bc I had forgot I had the surgery.
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bigdreams55

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Re: LL with Dr Rozbruch 2017-2018
« Reply #6 on: December 28, 2017, 06:29:06 AM »

Hey Bigdreams, just wanted to say that I really enjoy the detail of your diary, thanks for sharing. What's your current height?

Best of luck, keep us posted!

I am 5'5
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bigdreams55

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Re: LL with Dr Rozbruch 2017-2018
« Reply #7 on: December 28, 2017, 06:34:09 AM »

Hey thanks for sharing your experience, it's very interesting that they decided to use a cpm machine, I've seeen it used in total knee arthroplastys post op to prevent stiffness, makes sense to use for LL. If yu don't mind me asking what was a duration of cpm therapy, 2hr a day twice a day? And it was used on both legs I'm assuming? Does Dr. R do this on everyone or just you?

Also of course I have to ask about insurance, did they pay anything, if so what was left for you to pay and what insurance was it?

I'm sorry I know it's a very intrusive question but it really helps and I'm sure it's the number 1 question people have.

Anyways God Speed brother I'm excited to read about the rest of your journey, your in good hands

Yeah, I think Dr. Rozbruch provides this to all his LL patients immediately after surgery to promote knee flexion. I was doing 2 sessions a day for 2 hours on each leg (8 hours total). Dr. Rozbruch didn't recommend I do the CPM at home just the exercises/stretches he provides.

I don't really know what the total cost will be at this time. Ill update when I do know and insurance has processed.
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Hudson

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Re: LL with Dr Rozbruch 2017-2018
« Reply #8 on: December 28, 2017, 05:31:22 PM »

Hello,

Did you pay the fee for R? The insurance will pay for X-rays, hospital stay etc
For certain amount and you are waiting for the bill, but how about the pay for R? 
Isn't that upfront?

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6FeetSoon

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Re: LL with Dr Rozbruch 2017-2018
« Reply #9 on: December 28, 2017, 07:09:45 PM »

Hello,

Did you pay the fee for R? The insurance will pay for X-rays, hospital stay etc
For certain amount and you are waiting for the bill, but how about the pay for R? 
Isn't that upfront?

The upfront deposit is $30,000 for Rozbruch.
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6FeetSoon

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Re: LL with Dr Rozbruch 2017-2018
« Reply #10 on: December 28, 2017, 07:12:34 PM »

Hey everyone! First of all, I want to thank 6ftsoon and ShortLivesMatter for documenting their LL experience with Dr. Rozbruch, it made preparing for my own surgery much easier.


Glad i could help. Let me know if you need anything or want to catch up when you do your check-ups. I’m basically next door to HSS.
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bigdreams55

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Re: LL with Dr Rozbruch 2017-2018
« Reply #11 on: December 29, 2017, 05:05:32 AM »

The upfront deposit is $30,000 for Rozbruch.

This.

Without any insurance help, his total fees will be 75k.

Hospital and xrays will mostly be covered by insurance, and will be just a small amount out of pocket.
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bigdreams55

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Re: LL with Dr Rozbruch 2017-2018
« Reply #12 on: December 29, 2017, 05:14:12 AM »

Glad i could help. Let me know if you need anything or want to catch up when you do your check-ups. I’m basically next door to HSS.

Yeah bro, your diary was phenomenal and your recovery was really amazing! You don't update your diary often, which makes sense as you're probably past all this, but I hope you're running and playing sports with no limitations!

Also, I assume you plan on getting the nails removed soon?


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6FeetSoon

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Re: LL with Dr Rozbruch 2017-2018
« Reply #13 on: December 29, 2017, 06:36:18 PM »

Yeah bro, your diary was phenomenal and your recovery was really amazing! You don't update your diary often, which makes sense as you're probably past all this, but I hope you're running and playing sports with no limitations!

Also, I assume you plan on getting the nails removed soon?

Yeah all i come on here for now is to check my inbox for requests to meet up. And indeed, will schedule my nail removal for March.
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Sikici

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Re: LL with Dr Rozbruch 2017-2018
« Reply #14 on: December 30, 2017, 07:34:58 AM »

How tall are you hermano?
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Android

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Re: LL with Dr Rozbruch 2017-2018
« Reply #15 on: December 30, 2017, 09:59:46 AM »

How tall are you hermano?

He's 5'5", or 165 cm.
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5'4" and 1/4" (163.2 cm) | United States | early 30s | Cross-lengthening with Dr. Solomin & Dr. Kulesh

lon chaney

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Re: LL with Dr Rozbruch 2017-2018
« Reply #16 on: January 04, 2018, 10:51:11 PM »

hey bigdreams, thanks so much for this vital journal and a hearty congrats / continued good luck from me! i've been approved by rozbruch and the psych eval, almost certainly gonna move forward with surgery this year. one question i have is about how closely we have to work with caregivers. now unless i'm misreading you, sounds like you're your own personal caregiver and that's going well? my mother doesn't have a day-job and she was planning on looking after me during the first approximately 1.5 months. we were gonna stay in a two bedroom suite together. would you say that's wholly unnecessary and i'd likely do well if we stayed in separate units? independence is important to me too but i think having family i'm close with and trust to help out is a good idea, especially because my mother doesn't have much else to do and is really happy to help. but the idea of having totally separate rooms sounds much better instead of sharing a suite, just for privacy and noise reasons. i mean, it's no problem getting from your bed to the wheelchair, right? for a late night bathroom break? or do you have a significant other who's helping you with that and we in fact need that kind of help 24/7? get back to me when you can and thanks! hope you're well
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jyhtha

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Re: LL with Dr Rozbruch 2017-2018
« Reply #17 on: January 05, 2018, 03:37:50 AM »

Hi bigdreams55,

Thank you so much for sharing your exciting journey. I wish you all the best in the coming days. Dr. Rozbruch is an awesome choice. The only concern I have is the cost. Could you let us know which insurance carrier are you using (Aetna, United Health)? Also I'm quite confused about the hospital fees. I've read 6FeetSoon and ShortLivesMatter's posts. Their sharing are very helpful but it seems that they gave very different numbers concerning the hospital fees. In 6FeetSoon's post, the number is 35k and all covered up by the insurance. In ShortLivesMatter's post, it's 88k and also all covered up by the insurance. I'm wondering what's the number in your case. 88k seems really high to me. In that case, I won't dare to risk the fact that the insurance company might decline the claim. I'm using Aetna PPO by the way. Thanks!
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bigdreams55

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Re: LL with Dr Rozbruch 2017-2018
« Reply #18 on: January 05, 2018, 08:16:15 AM »

Hey all,

I had my first post-op with Dr. Rozbruch today, I have distracted a total of 1.4 cm so far. I had really strong callus and bone formation on both legs, with the right having a bit more, so Dr. Rozbruch recommended I go to 1.33 mm/day for a week to help ensure no pre-consolidation. Range of motion and flexibility is good, but again it is still early in the process. Will see what issues I come across after hitting 3 cm+ and 5 cm+.

I was able to drive myself to Dr. Rozbruch office despite a snowstorm and the pain is still minimal (almost none during the day). My only concern so far is difficulty sleeping. I'm usually a side sleeper, so adjusting to sleeping on your back is difficult, and I cant stay asleep longer than a few hours before waking up to discomfort. It appears this is common, does anyone have any ideas that could help with sleep? I've been using Tylenol PM, which helps a bit.

Also, I hear random cracks in knee, leg and hip every now and then throughout the day. Is that normal? Forgot to ask Dr. Rozbruch but it doesnt seem like a big issue to me.
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bigdreams55

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Re: LL with Dr Rozbruch 2017-2018
« Reply #19 on: January 05, 2018, 08:26:15 AM »

hey bigdreams, thanks so much for this vital journal and a hearty congrats / continued good luck from me! i've been approved by rozbruch and the psych eval, almost certainly gonna move forward with surgery this year. one question i have is about how closely we have to work with caregivers. now unless i'm misreading you, sounds like you're your own personal caregiver and that's going well? my mother doesn't have a day-job and she was planning on looking after me during the first approximately 1.5 months. we were gonna stay in a two bedroom suite together. would you say that's wholly unnecessary and i'd likely do well if we stayed in separate units? independence is important to me too but i think having family i'm close with and trust to help out is a good idea, especially because my mother doesn't have much else to do and is really happy to help. but the idea of having totally separate rooms sounds much better instead of sharing a suite, just for privacy and noise reasons. i mean, it's no problem getting from your bed to the wheelchair, right? for a late night bathroom break? or do you have a significant other who's helping you with that and we in fact need that kind of help 24/7? get back to me when you can and thanks! hope you're well

I've been very independent from day 1, and have been able to do 95% of things by myself. My roommate helps with cleaning floors and lifting heavy things (ie ERC device in box), and I get random people to help pump my gas, but it is pretty manageable to do most things by yourself. You'll fight stiffness and a little pain the first two weeks but if you're determined, you can manage. I think its important you make sure you have wide doors and a wheelchair that easy to transfer into and lightweight (look up quickie or aero, expensive but buy used and resell after) and you'll have no problem being independent. In your case, see if you can get an ADA-compliant apartment and it will be nice to have your mom there, I didn't have that option, but I truly believe you can manage mostly yourself.
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Android

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Re: LL with Dr Rozbruch 2017-2018
« Reply #20 on: January 05, 2018, 08:29:49 AM »

It appears this is common, does anyone have any ideas that could help with sleep? I've been using Tylenol PM, which helps a bit.

I suggest ZzzQuil.
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bigdreams55

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Re: LL with Dr Rozbruch 2017-2018
« Reply #21 on: January 05, 2018, 08:38:40 AM »

Hi bigdreams55,

Thank you so much for sharing your exciting journey. I wish you all the best in the coming days. Dr. Rozbruch is an awesome choice. The only concern I have is the cost. Could you let us know which insurance carrier are you using (Aetna, United Health)? Also I'm quite confused about the hospital fees. I've read 6FeetSoon and ShortLivesMatter's posts. Their sharing are very helpful but it seems that they gave very different numbers concerning the hospital fees. In 6FeetSoon's post, the number is 35k and all covered up by the insurance. In ShortLivesMatter's post, it's 88k and also all covered up by the insurance. I'm wondering what's the number in your case. 88k seems really high to me. In that case, I won't dare to risk the fact that the insurance company might decline the claim. I'm using Aetna PPO by the way. Thanks!

I have Cigna.

I really don't know the total cost yet but I saved for years for this and I wanted to have the surgery with one of the best surgeons out there, so I planned really far ahead financially. I think its smart to have plenty in reserve in addition to cost of surgery because you really dont want to be super tight on budget during these few months.

Ill update when I have numbers.
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jyhtha

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Re: LL with Dr Rozbruch 2017-2018
« Reply #22 on: January 05, 2018, 05:35:43 PM »

Thanks, bigdreams55. Yeah, it takes time for the insurance company to process the claim. Let's hope it will cover most part of the cost.Good luck!
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lon chaney

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Re: LL with Dr Rozbruch 2017-2018
« Reply #23 on: January 05, 2018, 07:21:54 PM »

Also, I hear random cracks in knee, leg and hip every now and then throughout the day. Is that normal? Forgot to ask Dr. Rozbruch but it doesnt seem like a big issue to me.

i'm not sure, you might shoot dr. rozbruch or someone else at the office a quick email about it?
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ShortLivesMatter

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Re: LL with Dr Rozbruch 2017-2018
« Reply #24 on: January 06, 2018, 05:45:06 PM »

Hey all,

I had my first post-op with Dr. Rozbruch today, I have distracted a total of 1.4 cm so far. I had really strong callus and bone formation on both legs, with the right having a bit more, so Dr. Rozbruch recommended I go to 1.33 mm/day for a week to help ensure no pre-consolidation. Range of motion and flexibility is good, but again it is still early in the process. Will see what issues I come across after hitting 3 cm+ and 5 cm+.

I was able to drive myself to Dr. Rozbruch office despite a snowstorm and the pain is still minimal (almost none during the day). My only concern so far is difficulty sleeping. I'm usually a side sleeper, so adjusting to sleeping on your back is difficult, and I cant stay asleep longer than a few hours before waking up to discomfort. It appears this is common, does anyone have any ideas that could help with sleep? I've been using Tylenol PM, which helps a bit.

Also, I hear random cracks in knee, leg and hip every now and then throughout the day. Is that normal? Forgot to ask Dr. Rozbruch but it doesnt seem like a big issue to me.

Wow, amazing that you were able to make it to the office during the snowstorm. I was scheduled for a visit on Thursday too but was afraid of the snow conditions so had to cancel. How were the roads and sidewalks?  Yeah I had a hell of a time sleeping too during the lengthening phase, nothing really helped for me. I also had random cracks in my joints too, shouldn't be anything to worry about.
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bigdreams55

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Re: LL with Dr Rozbruch 2017-2018
« Reply #25 on: January 08, 2018, 07:22:54 PM »

Wow, amazing that you were able to make it to the office during the snowstorm. I was scheduled for a visit on Thursday too but was afraid of the snow conditions so had to cancel. How were the roads and sidewalks?  Yeah I had a hell of a time sleeping too during the lengthening phase, nothing really helped for me. I also had random cracks in my joints too, shouldn't be anything to worry about.

Aww man, it would have been nice to have met in person. Most of his patients ended up cancelling which was kinda nice because I got all the attention haha. The roads and sidewalks were kinda bad, I got help getting through it all from random people.

And yeah, I think I'm adjusting to crappy sleep. I take a tylenol PM, sleep for a few hours, wake up to aches, use the stationary bike and then get another hour or two and repeat as necessary for 6-8 hours a sleep a night. Not the greatest sleep, but its only during lengthening so I'll manage.

Hope to hear great news from your next visit with Dr. Rozbruch soon!
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jojo

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Re: LL with Dr Rozbruch 2017-2018
« Reply #26 on: January 09, 2018, 05:59:17 PM »

Hey

great posts
when are you done lengthening?
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lon chaney

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Re: LL with Dr Rozbruch 2017-2018
« Reply #27 on: January 09, 2018, 11:59:59 PM »

hey again bigdreams... kind of specific question here: how's showering been? how do you maneuver getting into the shower bench/seat? thanks and hope you're well
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lon chaney

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Re: LL with Dr Rozbruch 2017-2018
« Reply #28 on: January 18, 2018, 11:29:55 PM »

yo, any updates? how're u doing?
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Resilience

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Re: LL with Dr Rozbruch 2017-2018
« Reply #29 on: January 19, 2018, 12:09:49 AM »

Well written diary! I love the extra planning that you took. Godspeed!
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lon chaney

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Re: LL with Dr Rozbruch 2017-2018
« Reply #30 on: January 23, 2018, 06:48:09 PM »

aw cmon, no updates?
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