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Author Topic: My Vertical Push with Dr. Debiparshad (Strydes in Femurs)  (Read 5814 times)

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verticalpush

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My Vertical Push with Dr. Debiparshad (Strydes in Femurs)
« on: May 27, 2019, 07:30:50 PM »

Hello everyone - let me start off by saying what a wonderful forum this and the old forum were over the years. I have been serious about getting this surgery for the past 10 years but the idea of being bedridden for 3 months was enough to put me off from the surgery.

First, a little about me. I'm in my mid-30s. I have a decent paying job which allowed me far more and better options for financing than I would've had 10 years ago. Sure it would've been nice to get this done earlier and enjoy more years with my new height, but having much less stress about paying off my loan combined with the much better technology in the Stryde nail versus previous iterations make me glad that I waited. I'm almost 5'9, which I realize is considered average in the United States, but I travel a lot and especially in Europe (and even many American cities), 5'9 is most certainly not average IMHO. Doing this had nothing to do with with improving my chances with women - I've met and dated many fantastic women in my life but things didn't work out for various reasons. Having said that, I have some anecdotes with pushed me towards surgery. I dated a woman for almost 4 years and she mentioned many times during our relationship how she wished I was taller (again, I consider myself average). While I would like to consider her the exception (especially among 5'6 girls), it sort of planted the seed in my mind for how important society deems height. For the past 4 years coinciding with a new job in a new city, I've worn 2.5 inch lifts in boots, and primarily only wear boots. I've noticed better respect from colleagues, dating has been easier (until I take my boots off!), and overall I feel much more confidence and greater mental health. But, I feel every day I play russian roulette -- the embarrassment of  being with friends and taking off my boots at an airport security screener, the time I had been randomly selected to be screened at an airport gate in France and the security screener loudly called over her supervisor when she noticed I had lifts in my shoes, and being absolutely mortified to go over to friends house if there's a chance I need to take my boots off when I enter their house, etc. I do not want to live the rest of my life living in fear of being exposed. Plus, boots with 2.5 inch heels hurt after a while! The other issue is that I have a 5 mm limb length discrepancy between my legs. I read some peer reviewed journal articles and there does seem to be a link between having that much discrepancy and future hip issues. Before anyone asks - no that did not at all help to get insurance to pay for any part of the surgery.

I had some free time from my work coming up this summer and figured it would be perfect to get the surgery done. I did so much research and contacted 3 doctors - Dr. M of Los Angeles, Dr. Paley, and Dr. D. I could not find a single diary of Dr. D., and so to my knowledge this is the first. I will share the good, the bad, and the ugly along the way. I'll also dispel some myths that I've found and share some tips. But most importantly to me, I'll hopefully get some good advice from the awesome veterans of the surgery that can make a big difference in the recovery. I had an excellent vibe from Dr. D. but was dismayed as many of you were that there was not a single diary. I took a considerable risk. I was lined up to get the surgery after my video consult and originally wasn't going to meet him in person until a couple days before the surgery. I had many sleepless nights fearing this could be a giant scam, so I planned a quick trip to Vegas to meet him and see his practice in person before handing over final payment. Dr. D. spent 3 hours talking to me that day. He brought in a former patient who was very open about the process. You get the sense from talking to Dr. D. that he is passionate about the work he does. His face lights up when he talks about surgery. Go to the local bar and ask the most passionate fan what he thinks about his favorite football team. That's how I'd compare it. He isn't fixing someone's broken bone and getting them back to the lifestyle they had - his work is physically transforming someone into image they have in their minds.

I flew to the area a few days before surgery. I couldn't enjoy the strip - I was a nervous wreck prior to surgery. I could barely sleep. This was one of the most difficult parts of the process. I spent some time hiking some of the beautiful mountains nearby knowing this is something I won't be able to do for a while.

Day 1
I had a Lyft take me to the hospital. They wanted me there at 6am. The hospital was very thorough. They called me several times the day prior asking what medication I was on and told me what I needed to do before surgery. Upon arriving at the hospital (Sunrise), they have a temporary check in set up in the womens/childrens hospital. They're doing some construction in the main check in area. The hospital itself is on par with any other hospital in a major American city. It's an HCA Health owned location. Rooms are up to date. TVs have more channels than I've ever seen in a hospital, and the technology they use means constantly scanning a barcode you wear on your arm before administering any medicine. They keep track of literally everything.

It took a while between checking in and the nurse calling me back in the pre-surgery staging area. I met the anesthesiologist (very funny Eastern European guy who cracked many jokes while we were there). They inventory everything you bring, so when you have multiple suitcases it's going to take a while. Of course when I mentioned to the security guard I had my medicine for post-surgery in my bag the nurse overheard that and flipped out - she took the medicine right away and called a second nurse over to count every single pill. I understand that, of course. Dr. D. came out, talked very briefly (one thing I notice is that Dr. D. is laser focused - he doesn't engage in a lot of small talk outside of limb lengthening in general. That's okay with me. His focus is probably much better than my focus is on most matters!

Okay, surgery time. I'm transferred to the bed. I feel like it took a decent amount of time for the anesthesia to kick in. They put a catheter in you after you're knocked out, as well as shaving the parts of your legs where the surgery takes place. Next thing I remember is waking up in the recovery room. Normally immediately after surgery I feel very loopy - possibly due to too much anesthesia. Not this time. I wasn't nauseous at all (at least not yet). In recovery there is one nurse assigned to you 100% of the time. She was very nice, told me lots of stories. She was working the night of the fatal shooting from Mandalay Bay and told me about that. Every person in that hospital the night of the shooting is an absolute hero. I suggested to Dr. D.'s staff that they request her specifically for future CLL patients. I was able to get a urinal to take with me for later use in the hotel. Dr. D. checked in with me briefly post-surgery. I think it says on his web site surgery is 1 hour -- well, that was certainly not the case. Apparently it was about 3 hours.

Next I was transferred to my private room in the hospital. The room, like I said earlier, was very modern. But boy was it small. The move up to my room made me feel very nauseous. I told the first nurse I was probably going to throw up but she did not come back quickly and I couldn't hold it any longer. One of the things I learned is that there is a wide difference in the responsiveness of the nurses. A lot of that, I'm sure, depends on how busy they are at the moment.

I'm currently on day 4. Since this post is getting so long I'll put up another post below a little later with days 2-4. Because I know how important pictures are, I'm attaching my initial picture standing next to Dr. D. and x-rays someone took from a monitor right after the surgery. By the way, it was the 11.5 gauge nail.

Images from pre-surgery and xrays post-surgery
« Last Edit: May 27, 2019, 08:47:58 PM by verticalpush »
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wannagrowtaller

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Re: My Vertical Push with Dr. Debiparshad (Strydes in Femurs)
« Reply #1 on: May 27, 2019, 11:40:19 PM »

Good start.

What is your pain level now? Can you walk with the walker?

I wish you all the best. Good luck to you.
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verticalpush

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Re: My Vertical Push with Dr. Debiparshad (Strydes in Femurs)
« Reply #2 on: May 27, 2019, 11:49:01 PM »

Good start.

What is your pain level now? Can you walk with the walker?

I wish you all the best. Good luck to you.
Thank you wannagrowtaller! Pain is very manageable. I think knowing your limit regarding movement each time you get up and also doing good stretches every hour or so helps tremendously.

I'd put my pain between about a 2 or 3 here on day 4. The doctor prescribed me a long term pain medicine (morphine) and a short term pain medicine (oxy). I've mostly made it with just the morphine and no oxy, except that I'll take half of an oxy an hour before PT. My goal will be to taper off these pain meds as soon as possible and only use OTC pain meds. I was expecting pain to be much worse!

I purchased a walker from Walmart the day before surgery. The PT at the hospital used that walker to train me. I'm very happy to say that I can use the walker comfortably on my own. I'm able to easily get from the bed to the bathroom with the walker. The hardest part is getting up from the bed and sitting back down on the bed.
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wannagrowtaller

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Re: My Vertical Push with Dr. Debiparshad (Strydes in Femurs)
« Reply #3 on: May 27, 2019, 11:53:25 PM »

Which nail diameter they used in you?

What is your initial height?
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verticalpush

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Re: My Vertical Push with Dr. Debiparshad (Strydes in Femurs)
« Reply #4 on: May 28, 2019, 12:16:09 AM »

Which nail diameter they used in you?

What is your initial height?
They used the 11.5 nail. My initial height was just about 5'9".
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wannagrowtaller

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Re: My Vertical Push with Dr. Debiparshad (Strydes in Femurs)
« Reply #5 on: May 28, 2019, 12:32:21 AM »

You are not short. What is your goal?
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Ghostfish

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Re: My Vertical Push with Dr. Debiparshad (Strydes in Femurs)
« Reply #6 on: May 28, 2019, 01:08:40 AM »

Hi werticalpush

Wow, you made it!  Congrats to you on starting your journey!  The hardest is the start and now you started!  Things will move everyday.
The pain will come to you soon after you are discharged.  You will have some surgery pain for 3 weeks and it will get better and better about 2-3 weeks postop.  Stay strong and focused!

Good luck! 
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verticalpush

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Re: My Vertical Push with Dr. Debiparshad (Strydes in Femurs)
« Reply #7 on: May 28, 2019, 01:17:21 AM »

OK, so here starts day 2. Before I start I wanted to mention some pre-surgery stuff starting with the Limbplastx staff. Teresa is their point person who coordinates scheduling. She seems very motherly when you meet her in person. Ronnie is the X-ray guy / physician assistant. He's a very humble, down to earth guy. When they asked me how I was going to get from the hospital to the hotel and I said I had no idea (I didn't bring any family and I didn't have a caretaker lined up at the time), Ronnie graciously offered to come pick me up from the hospital and get me to the hotel. Both Teresa and Ronnie gave me their cell numbers and told me to contact them any time of the day if I needed to reach the Doctor. When I was having trouble lining up a caretaker (the center's designated caretaker never called me to schedule the caretaker), Teresa encouraged me to see how I was feeling on Sunday, the day I'd be discharged from the hospital. Obviously not using a caretaker would save me a lot of money, so I was determined to make as much progress as I could in the hospital. Both Ronnie and Teresa have been checking in on me. Speaking of pre-surgery stuff, I posted another album on IMGUR of some pre-surgery stuff, including pics of the Limbplastx office and also Red Rock Canyon, which is a BEAUTIFUL hike I recommend everyone does just prior to their surgery! Ok, back to the report

Day 2 (Saturday)
When I woke up, I felt very little pain. One thing that surprised me is that you can NOT depend on the nurses to remember to bring your pain medicine around. As I learned, if you don't say anything you can easily find yourself going 10 hours without pain medicine, which is what happened Day 1 into the morning of Day 2. The hospital bed is comfortable. They put a device on your knees that massages you / prevents clots. There's a constant cycle of nurses coming in to check your vitals. They were good enough to pretty much always keep the door closed so I had privacy, but you should prepare yourself to be woken up from a deep slumber several times.

Some nurses are great to talk to. Others will forget requests and will need to be reminded. Sometimes it can take an hour to get pain medicine after you request it. The normal day nurse, Maureen, and the normal night nurse, Doug, were both fantastic. I really enjoyed talking to each of them. They were very open minded about the procedure and were very encouraging. Doug, the overnight nurse, is a total bro, it was like having one of my best friends there with me. He was very curious about the surgery. From talking with a few of the nurses, I definitely got the sense there have NOT been that many Stryde cases at the hospital, but they all spoke highly of Dr. D. Apparently he held a couple of seminars with the hospital staff to explain what the procedure was and exactly what to do. But many of staff were confused about the procedure and were genuinely curious about it.
 
So I still have the catheter in me the morning of day 2. Since Doug was still working till 7am I figured I would rather have him pull it out than one of the female nurses (especially after I mistakenly guessed the day nurse (Maureen's) age to be 4 years older than she is!). Yes, it sucked when he pulled it out. But then it got worse - he told me I needed to pee within 5 hours or they'd need to stick another temporary catheter in me (while conscious) to extract pee. I had anxiety about that the entire morning.

PT came for the first time in day 2. Mandy was the PT I used at the hospital. She was fantastic and I hope Dr. D.'s PT is as good as she was. She was very encouraging, and she knows all about what stretches need to be done, etc. The first time she came I got up, practiced using the walker, and moved to the other side of the room. It was very painful. Using the walker was difficult. But most importantly, I just wanted to pee. I was very discouraged at this point. My gait was absolutely awful. She helped me use the walker to get to the toilet to try to pee but no luck. After I sat back down on the bed I took some more pain medicine and started to feel better. Unfortunately I was running close to the time limit of showing that I could urinate on my own. My bladder felt like it could burst. I was questioning my decision to do this. It was a very dark moment of this journey.

Dr. D. came in to see me a little later. He told the nurse not to give me the catheter -- he said to give me some more time. I'll be honest I don't remember saying very much to the Doctor at this time. I was loopy and discouraged. He told me that Dan, the rep from Nuvasive (he was also present during the surgery) would be around after him to explain how to use the device. I was really hoping for some time alone after he left to process and hopefully mentally recover. Almost as soon as he left the room the Nuvasive rep showed up. I don't think I heard a word the guy said. I apologized to him and explained my situation. Dan was good enough to give me his cell number to contact him with questions about operating the device, and after about 10 minutes or so he left.

Almost right after he left I was finally able to pee! I felt like a million bucks. It was all I needed for things to turn around. I stayed on the low side of pain meds the rest of the day. A little later Mandy the PT came back and it was time for round 2. Round 2 was SO MUCH BETTER!! Being able to pee changed my mindset entirely. Walking was so much easier. This time, she was barely helping me. I got up to the walker on my own and walked out of my room. I took a few more steps into the hallway before returning back. Like I said, I felt like I had a boulder lifted off my back and that there was light at the end of the tunnel. She gave me some stretching exercise homework for the night -- mainly bending my knees and also pressing down my kneecaps into the pillow. Prior to this there was very little flexibility in my knees, so hopefully we would see some good progress on day 3.

Pain levels -- 5/6 in the morning, down to a 3/4 in the evening.

Up next, day 3!
« Last Edit: May 28, 2019, 02:22:23 AM by verticalpush »
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verticalpush

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Re: My Vertical Push with Dr. Debiparshad (Strydes in Femurs)
« Reply #8 on: May 28, 2019, 01:21:50 AM »

Hi werticalpush

Wow, you made it!  Congrats to you on starting your journey!  The hardest is the start and now you started!  Things will move everyday.
The pain will come to you soon after you are discharged.  You will have some surgery pain for 3 weeks and it will get better and better about 2-3 weeks postop.  Stay strong and focused!

Good luck! 

Thanks Ghostfish! I'm on day 4, one day after discharge right now. My diary is lagged by a few days. I should be posting day 3 shortly, possibly tomorrow. Fortunately the pain here on day 4 is so low I'd almost say I forget about it until I move my legs. My biggest issue on day 4 is that I haven't been able to poop since surgery. I'm taking stool softeners and plan to take Dulcolax tonight to hopefully get me going tomorrow.
 
You are not short. What is your goal?

Thanks Wannagrowtaller. You're right, 5'9 may be a great height for many people but I am not satisfied with my present height and never have been. If you're interested, I discussed my reasons for wanting to do this in my original post in this thread. 5'9 is still on the shorter side within certain countries, ethnicities, and environments. My goal is to extend 3 inches.

I appreciate everyone's questions!
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verticalpush

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Re: My Vertical Push with Dr. Debiparshad (Strydes in Femurs)
« Reply #9 on: May 29, 2019, 02:25:51 AM »

Well my diary doesn't seem to be getting very much activity so far, so I'll make this update on day 5 very quick. I finally pooped! It's amazing how finally being able to pee and then finally being able to poop can feel like such awesome accomplishments, but here we are. I'm in a very positive frame of mind!
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Ghostfish

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Re: My Vertical Push with Dr. Debiparshad (Strydes in Femurs)
« Reply #10 on: May 29, 2019, 03:43:26 AM »

Well my diary doesn't seem to be getting very much activity so far, so I'll make this update on day 5 very quick. I finally pooped! It's amazing how finally being able to pee and then finally being able to poop can feel like such awesome accomplishments, but here we are. I'm in a very positive frame of mind!
Congrats on making poop!  I got a couple of bad constipation at that time.  One time was like a week or so.  I tried for an hour on the toilet every day and failed. haha  Later I found the stool softener.  That was really helpful! 
Keep the good work!!
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verticalpush

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Re: My Vertical Push with Dr. Debiparshad (Strydes in Femurs)
« Reply #11 on: May 29, 2019, 04:02:33 AM »

Congrats on making poop!  I got a couple of bad constipation at that time.  One time was like a week or so.  I tried for an hour on the toilet every day and failed. haha  Later I found the stool softener.  That was really helpful! 
Keep the good work!!

Haha Ghostfish -- we probably both filed that under "things nobody told us prior to surgery"! I did ask for stool softener every day at the hospital but that had no effect. The last day the nurses gave me 2 cans of prune juice and milk of magnesia but still no dice. I was feeling bloated and constipated. I was going to ask them for an enema because I knew it would be easier to go at the hospital than at the hotel.

Once I got to the hotel I put together a grocery delivery order that included stool softener and dulcolax. I must've taken about 4 stool softener pills and 3 dulcolax pills. It finally did the trick! I finally feel like a normal human being again.
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Ghostfish

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Re: My Vertical Push with Dr. Debiparshad (Strydes in Femurs)
« Reply #12 on: May 29, 2019, 06:39:50 AM »

Yeah, you need to take max dose of softener multiple times to make poops. lol  When I finally pooped, wow it was a huge relief!  Seating on the toilet with broken and swollen legs for a long time was so uncomfortable.  I sweat like I was in sauna on the toilet.   
Take care!
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Canon

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Re: My Vertical Push with Dr. Debiparshad (Strydes in Femurs)
« Reply #13 on: May 29, 2019, 06:53:30 AM »

How much have you paid? Hope you will get well soon!
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verticalpush

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Re: My Vertical Push with Dr. Debiparshad (Strydes in Femurs)
« Reply #14 on: May 29, 2019, 08:53:50 PM »

How much have you paid? Hope you will get well soon!

Thank you for the nice words, Canon!! I believe it was $73,000 all in. I got a discount for doing PT at home after my 3 weeks in Vegas which I'll run through insurance. Fortunately no complications (knock on wood) and I felt comfortable enough in my (VERY) limited mobility to not use a caretaker. I cashed out credit card rewards to pay for the hotels in Vegas. I have some extra money on reserve but haven't needed to dip into that yet.

The way I look at it, it amounts to a nice sports car (except it entails far more pain!).
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verticalpush

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Re: My Vertical Push with Dr. Debiparshad (Strydes in Femurs)
« Reply #15 on: May 29, 2019, 09:27:57 PM »

Okay, sorry I was slacking. I'll give a quick Day 3 and then updates on days 4-6. Today is day 6.

Day 3- discharge day
Felt so much positivity today after successfully peeing yesterday. Pain was up a little bit more because I pushed myself a good bit in the second PT session yesterday. Today involved two more PT sessions - both very productive and I walked much farther. I had less of a "shuffle" with my feet. The PT encouraged me to lift my knees up. So, my gait still sucks but at least it sucks a bit less lol. Wish I could say the transition from bed to walker gets any easier the first few days but it doesn't really. The trick that works best for me is to treat it like a squat. Sit down on the bed and lean forward. Use your hands on the bed or the surface you're getting off from to help push you up. Keep going until your head is almost over the walker. I don't even put my hands on the walker until I'm about 75% vertical. So, I'm not really using the bars on the walker to pull myself up. One last shout out to Mandy the hospital PT. She knows what she's doing and it felt like she was the perfect combination of cheerleader / drill sergeant.

I wanted to poop before leaving the hospital. They gave me prune juice and milk of magnesia but nothing worked. Dr. Debiparshad came back again today to talk. We probably talked for an hour - he could definitely tell I was in better spirits. We talked more about why he decided to do CLL surgery, what his future plans were, what he's learned about other patients, patients that have approached him who he's rejected, things he learned from Paley, etc. It's interesting he doesn't make nearly as much money off this as you'd think he would. I learned I'm his tallest patient so far. I encouraged him not to set a maximum limit because this is more about what's in someone's mind and how they see themself. Having said that, I would never recommend someone taller than 5'11 or 6' go forward with this - it is NOT a walk in the park. And of course you are risking health issues down the road.

The food did not get much better the whole time I was there. There was rubber chicken, bland meatloaf, some sort of omelette, and some combination beef/spiral pasta that tasted almost exactly like you'd expect it to taste. The desserts were pretty decent. My favorite was the snickerdoodle cookie. I didn't eat more than half of each meal. It was getting close to discharge. I had to remind the nurses several times about it. One thing I give to their credit - they called security ahead of time and had my prescription drugs I brought with me sent to the room so I wouldn't have to wait hours for them to bring it up.

Ronnie from LPX came up and it was time to go. Without him I have no idea how I'd make it back. Ronnie's great. I wanted to pay him but he refused - he said his reward is knowing how he can help good people out in a pinch. Whatever, I found him on Venmo and gave him money anyway. He drives a sedan so the transfer from wheelchair to the car was NOT fun. It was about a 25 minute drive to the hotel (Hampton Inn South Henderson). Check in was smooth. Got free beef jerky (take that, my ex-girlfriend who said my obsession over loyalty programs was stupid). Placed an order for a grocery delivery for the next day.

That was it, I enjoyed being on a real bed and not having people checking in on me every 2 hours. Took my meds and fell asleep. I am NOT using a caretaker in the hotel. I know the risk that involves but I'm keeping my phone nearby in case anything goes wrong.

Days 4, 5, and 6.
Day 4 involved receiving my grocery order. I got protein bars, water bottles, gatorade, bananas, stuff to make PB&J sandwiches, stool softeners, and laxatives. Hotel overall is good. There's no room service but they will open the door to delivery services if you give them advance notice (but they make a bit of a fuss over this - the one guy said they can't really do that everyday).

Day 4 was Memorial Day so no PT. PT was to start on Day 5. However, it never happened. Teresa tried to get in contact with the PT but I guess they got their wires crossed. It's a bit frustrating because I want to push myself as hard as I can, but I made a few walks around the perimeter of my room. Standing seems to make a big difference on my muscles.

The biggest positive to come from day 5, as I noted above, was finally being able to poop. The combination of stool softeners and laxative pills did the trick. I started developing a sharp pain on the upper left side of my left leg. Overall the left leg is lagging behind my right leg in recovery. It doesn't move as well and there's a few cases of sharp pains when I bend my left leg a certain way. I HOPE this stops soon! Frustrated I had no PT but my body was pretty worn out today so I don't know how well I'd have been able to do anyway.

Day 6 is today. PT will be coming to the hotel in about a half hour. One minor annoyance is that after this session you have to figure out a way to get to the PT clinic. It's not as easy as hopping in an Uber, of course, so I'll need to call wheelchair transport companies which I'm sure will cost an arm and a leg. From what they told me, if you choose Homewood Suites in town (this and that hotel are on their preferred hotel page), they have a shuttle van that's wheelchair accessible and it will take you anywhere within a certain mile range for free. Anyway, I pooped again and this time it was much easier to sit and stand from the toilet. I still don't have very much of an appetite. I started lengthening today for the first time! I had two sessions already. The third lengthening session will happen tonight after PT. It's awesome to finally be doing the one thing I suffered through surgery to do. I read elsewhere on this forum that laying on the bed while using the machine helps - I can concur. I feel almost no pain at all when doing the lengthening. I texted Dan from Nuvasive to make sure I'm doing it right. You want to see the "X" on your leg in the crosshair of the machine. It's interesting the machine doesn't tell you if it's not aligned right though. That would be a good improvement in later iterations of the machine.

Here are a couple of pictures of the Nuvasive machine. One is the markings on my leg. I am to line up the crosshairs of the nuvasive machine with the "X" on my leg. The second is the screen of the machine.

Pain levels - left leg during movement = 6. Right leg during movement = 3. Both legs while resting = 2.

OK - we're up to date on my diary! I'll update as important things come up.
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verticalpush

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Re: My Vertical Push with Dr. Debiparshad (Strydes in Femurs)
« Reply #16 on: May 30, 2019, 03:14:22 AM »

Quick update on day 6:

Guys, the medicine makes me EXHAUSTED. Dr. D has me on:
xarelto   blood thinnerone per day
morphine long term pain12 hours
diazepammuscle relaxer8 hours as needed
oxycodoneshort term pain4 hours as needed

And a vitamin D supplement I take once a week.

For the past few days, I've been trying to go longer between morphine doses. After talking to Ronnie and consulting the nurses at the hospital, I did a few things to reduce pain meds. First, I started splitting the oxycodone pill in half and taking half doses every 4 hours. As of today, I've cut the morphine out entirely. So, I'm taking only 1/2 the oxycodone pill and no morphine, but taking everything else.

Pain seems to be manageable. HOWEVER, after completing the third lengthening session, it's way easier for me to feel sharp pains (like an 8/10 for a few seconds) in my legs. Wondering if it's better to go back to regular dose of oxy for just before leg lengthening, or going back on morphine. Anyone who's had any experience I'd love to hear it! I know the first week or so of lengthening is difficult and it gets easy over time.
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ActionSpeaks

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Re: My Vertical Push with Dr. Debiparshad (Strydes in Femurs)
« Reply #17 on: May 30, 2019, 06:58:33 AM »

Great diary! Dr. D is my main CLL option in The States so I really appreciate all your writing. That being said, did Dr. D say why he rejected some of these people who approached him for CLL surgery?
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Leggs

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Re: My Vertical Push with Dr. Debiparshad (Strydes in Femurs)
« Reply #18 on: May 30, 2019, 11:48:53 AM »

verticalpush-

Thanks for writing such a detailed account of your experience. You'll be feeling a lot better and more like a normal human being again very soon. Keep up the detailed posting.

You mentioned that you are concerned about the cost of a wheelchair accessible van for transportation, considering getting in and out of a sedan can be a real struggle right now. Just want to give you a quick tip in case you weren't aware. Uber has the option of Uber-WAV on their App. Stands for wheelchair accessible van. Just order an Uber as usual, but scroll through the options of Uberx, Pool, etc... look for WAV and you're set, usually same price as Uberx, so very cost effective.
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TheAlchemist

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Re: My Vertical Push with Dr. Debiparshad (Strydes in Femurs)
« Reply #19 on: May 30, 2019, 12:28:41 PM »

Hey Vertical Push:

Congrats on a successful start to your journey!

Thanks for your detailed, informative write up of your experience so far. As a prospective CLLer (scheduled later this summer) this is very helpful. I instantly connected with many parts of your story, I'm also about 5'9 and I totally get you, yes we're considered average, but folks like us can still struggle with severe height dysphoria on a daily basis.

I know the struggles with addiction to using shoe lifts and the roller coaster that comes with it: the instant high and gratification of putting shoe lifts on, having success with women and ignorantly attributing the success solely to the shoe lift height, the anxiety of masking them and constantly thinking about getting exposed (e.g. in a situation that requires removing your shoes like taking a girl home or visiting a friends house) and the lows of going home, taking your shoes off and feeling like a fraud. I totally get you man and I'm seeking this procedure out for many of the same reasons, you are not alone! I'll be reading through your diary and rooting for you!

A couple of questions (more on the personal side):

1) How did you manage your career / job through this experience? I, like you, am financing this myself after having saved up through my 20's. I'm passionate about my career and have a job I love but am struggling with approaching my employer with a leave of absence request, or just accepting that I will have to quit this job I commit to dedicating myself 100% to this procedure and move forward afterwards.

2) Are you keeping the procedure private from friends and family? If so, how have you managed comms and what story are you telling them? Right now, I'm keeping it private. I love my family and friends, but, I'm a) fairly independent from an emotional perspective so I think I'll be ok without their emotional support and b)  I don't want to burden them with having to worry about me. I'm trying to keep up with a story as to why I'll be away from home for the next 3 to 4 months.
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YungGud

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Re: My Vertical Push with Dr. Debiparshad (Strydes in Femurs)
« Reply #20 on: May 30, 2019, 12:35:41 PM »

Hi, Verticalpush, how it's going? Are u was 174 at your lowest before surgery?
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Height 5 ft 10.5 ( 179)
Goal 6 ft 2
wingspan 6 ft 2 (188)

Kenda

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Re: My Vertical Push with Dr. Debiparshad (Strydes in Femurs)
« Reply #21 on: May 30, 2019, 03:34:36 PM »

Thank you so much VerticalPush for your very detailed review of the process,
1)Okay this Cather thing seems so deadly tbh !! is it a must to use this thing! cant they just proceed with the surgery without it!
2) How did you feel regarding :
*knees, Hip bones, femur bones themselves .....Can you describe the pain in these areas?

3)Does it seem that the hospital staff and nurses who work at Limpstax are a bit immature and unexperienced much or do you feel like they know what they are doing....because from what you wrote it seems like the whole process depends on the people around you from PT Guy, nurses, Dr assistant and ofcourse Dr himself, so did you feel like he talked with excitment in your consult just to sell you the procedure & then things changed....what about PT guy does he work for limbplastx or the hospital..?

4)technology & machine wise, you mentioned that there was some sort of *machine* for your knee can you describe more, and do you feel like the center provided you with modern devices that would make the process of lengthening and PT easier or just the regular things (in other things : is there something special about them as a center , like special techniques, modern equipment,...etc) ?

Wish you the best ,
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wannagrowtaller

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Re: My Vertical Push with Dr. Debiparshad (Strydes in Femurs)
« Reply #22 on: May 30, 2019, 04:34:43 PM »

If you are a girl, maybe the catheter is less problematic to you. In America, you need to use it.
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Kenda

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Re: My Vertical Push with Dr. Debiparshad (Strydes in Femurs)
« Reply #23 on: May 30, 2019, 07:22:43 PM »

Oh so this is related to the US? Why? Thats wierd that they have to use it like i don’t understand what’s the purpose of this thing plus it seems like invasion of privacy to me lol !
The surgery is like 5 hours i think and the nail is weight bearing so whats the problem with going to the restroom or using this bucket thing that they give u
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wannagrowtaller

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Re: My Vertical Push with Dr. Debiparshad (Strydes in Femurs)
« Reply #24 on: May 30, 2019, 07:44:42 PM »

I think the anesthesia makes impossible for you to pee by yourself, so you need the catheter. I may be wrong.
I think in Europe they also use the catheter.
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verticalpush

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Re: My Vertical Push with Dr. Debiparshad (Strydes in Femurs)
« Reply #25 on: May 30, 2019, 10:56:58 PM »

Hi friends! Glad to have a few posts to respond to! Trust me, when you're laying in bed almost the whole day you look forward to moments you can feel useful.

Great diary! Dr. D is my main CLL option in The States so I really appreciate all your writing. That being said, did Dr. D say why he rejected some of these people who approached him for CLL surgery?

It mostly came down to unrealistic expectations about recovery and/or pain, ActionSpeaks. Some of this patients expected to jump right back into their day jobs 2 weeks post-surgery or return to their countries 2 weeks post-surgery with little realistic chance of follow visits. He also mentioned he learns a lot about someone based on the video consult. If he suspects other psychological issues beyond height dysmorphia in a patient, that gives him pause. A prospective patient must be 100% committed to what this very difficult process involves.

verticalpush-

Thanks for writing such a detailed account of your experience. You'll be feeling a lot better and more like a normal human being again very soon. Keep up the detailed posting.

You mentioned that you are concerned about the cost of a wheelchair accessible van for transportation, considering getting in and out of a sedan can be a real struggle right now. Just want to give you a quick tip in case you weren't aware. Uber has the option of Uber-WAV on their App. Stands for wheelchair accessible van. Just order an Uber as usual, but scroll through the options of Uberx, Pool, etc... look for WAV and you're set, usually same price as Uberx, so very cost effective.

Thanks Leggs! Truth be told I feel so much better already. Everytime I use the Nuvasive ERC machine I feel so much better because I'm one step closer to my goal. EXCELLENT tip on the Uber-WAV idea. Sadly it looks like it's not in Las Vegas yet BUT it got me to look into other options and I found one called Kabit. It's actually run by the different taxi companies here in Vegas but it works just like Uber and there IS a wheelchair option!! Hopefully I won't need to worry about a wheelchair at all in a week or so but it's great to have this option.

Hey Vertical Push:

Congrats on a successful start to your journey!

Thanks for your detailed, informative write up of your experience so far. As a prospective CLLer (scheduled later this summer) this is very helpful. I instantly connected with many parts of your story, I'm also about 5'9 and I totally get you, yes we're considered average, but folks like us can still struggle with severe height dysphoria on a daily basis.

I know the struggles with addiction to using shoe lifts and the roller coaster that comes with it: the instant high and gratification of putting shoe lifts on, having success with women and ignorantly attributing the success solely to the shoe lift height, the anxiety of masking them and constantly thinking about getting exposed (e.g. in a situation that requires removing your shoes like taking a girl home or visiting a friends house) and the lows of going home, taking your shoes off and feeling like a fraud. I totally get you man and I'm seeking this procedure out for many of the same reasons, you are not alone! I'll be reading through your diary and rooting for you!

A couple of questions (more on the personal side):

1) How did you manage your career / job through this experience? I, like you, am financing this myself after having saved up through my 20's. I'm passionate about my career and have a job I love but am struggling with approaching my employer with a leave of absence request, or just accepting that I will have to quit this job I commit to dedicating myself 100% to this procedure and move forward afterwards.

2) Are you keeping the procedure private from friends and family? If so, how have you managed comms and what story are you telling them? Right now, I'm keeping it private. I love my family and friends, but, I'm a) fairly independent from an emotional perspective so I think I'll be ok without their emotional support and b)  I don't want to burden them with having to worry about me. I'm trying to keep up with a story as to why I'll be away from home for the next 3 to 4 months.

I really appreciate the awesome encouraging words, The Alchemist! You nailed the pin on the head - wearing shoe lifts is an emotional roller coaster. As you get more and more comfortable wearing them you pick what things you do based around whether you can wear the lifts or not. I would almost never go to a pool party, which is a shame.

Your first question asks how I managed time off. I'm comfortable enough sharing that I work in the education industry where summers are normally off. Normally I pick up extra paid tasks in the summer for extra money but I didn't this summer. I was originally planning to do some sightseeing across Europe and South America with my ex-girlfriend with this time. While it didn't work out with her, it gave me the time and also gave me a head start on saving money for the surgery.

My story to family is that I am in fact traveling albeit solo. I told them I'm traveling across the southwest and stopping with some friends along the way. The friends I told family I'm staying with happen to be my closest friends and I did tell them about the surgery as a heads up. So far no one has asked me for pictures along the way, fortunately!

Hi, Verticalpush, how it's going? Are u was 174 at your lowest before surgery?
Hi, YungGud! I was 175 CM at the lowest before surgery.

Thank you so much VerticalPush for your very detailed review of the process,
1)Okay this Cather thing seems so deadly tbh !! is it a must to use this thing! cant they just proceed with the surgery without it!
2) How did you feel regarding :
*knees, Hip bones, femur bones themselves .....Can you describe the pain in these areas?

3)Does it seem that the hospital staff and nurses who work at Limpstax are a bit immature and unexperienced much or do you feel like they know what they are doing....because from what you wrote it seems like the whole process depends on the people around you from PT Guy, nurses, Dr assistant and ofcourse Dr himself, so did you feel like he talked with excitment in your consult just to sell you the procedure & then things changed....what about PT guy does he work for limbplastx or the hospital..?

4)technology & machine wise, you mentioned that there was some sort of *machine* for your knee can you describe more, and do you feel like the center provided you with modern devices that would make the process of lengthening and PT easier or just the regular things (in other things : is there something special about them as a center , like special techniques, modern equipment,...etc) ?

Wish you the best ,

Hello Kenda! I have no idea why they can't just put a bed pan under you in surgery instead of the catheter. Nobody could give me a straight answer when I asked them why it's absolutely necessary. Wannagrowtaller mentioned it's because you can't pee while you're under anesthesia, which makes sense. Maybe this is a good opportunity for an entrepreneur to think of something else.

The pain occurs in a few areas. Mostly it is on the outside of the femur bones. There are two areas where sharp pains might occur when I move around. I feel nothing in my hip bone. My knees don't ever cause pain per se, more like the kind of soreness you'd feel if you really pushed yourself hard during "leg day" at the gym. That soreness might be in the back of the knee like it was for me the first few days post-op.

The nurses/staff at the hospital had not seen many of Dr. D.'s Stryde patients (to be clear though, they all know who he is but they've mainly treated other types of his patients, whether it's Precice or it's something unrelated like back surgeries). It could mean a few things. One, Dr. D. has not had as many Stryde patients as a few of us had assumed he had and I'm still part of the first group of patients. It could also mean that the turnover at the hospital is so high that the first group of nurses he trained about Stryde have since moved on to other positions. Ronnie does work for Dr. D. but none of the PT folks I mentioned including Mandy at the hospital work for him. I start working with his PT on Friday so everyone I've had for therapy so far is familiar with the surgery in only the most general sense. I don't feel he was unrealistic with the expectations he set in the video consult but, and I'll tell him this directly, there are some things I wish he would have warned me about (nothing that would have changed my mind about surgery with him though)

As far as the machine that went on my leg and other things like that - that's all from the hospital. After the surgery you're never at the LimbplastX center unless you're getting x-rays done. You do PT at an outpatient facility. Optimal Physical Therapy is the center they use -- again it's not at the LimbplastX center. The staff from LimbplastX do check in on you (mainly Ronnie and Teresa) and they will offer to help you out in a pinch like transport you to get prescription refills.
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ActionSpeaks

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Re: My Vertical Push with Dr. Debiparshad (Strydes in Femurs)
« Reply #26 on: May 31, 2019, 08:47:04 AM »

Hi Vertical Push ~ thanks so much for your response to my question. That is great! I don't have any issues or bad health but am sure that I will feel very nervous overall during consult. I tend to get quiet/introverted when I'm nervous so I'll be sure to have information like plans during recovery etc handy so I can talk about that. Great information also on meds! Oh and thank you for saying that the actual LL surgery is longer than one hour. I saw this on the LimbplastX website and that gave me pause as other doctors (Paley, Mahboubian etc) take at least 4 hours. I was initially debating between Dr. D and Dr. M (LA) so am following your diary closely because, as you say, there is not much patient information or diaries to date on Dr. D. Congratulations on being so brave on not only having this surgery and whole LL process but on doing so with Dr. D who doesn't have much of a history yet on this forum! You mentioned $73k as the amount you paid, which is really great. I am undecided whether to have the consult (also going for Stryde/femurs) now or wait longer and save more in case I need any of the additional surgeries like iliotibial band release etc. I was rereading your diary again tonight to see how long you were in wheelchair before moving onto walker, but it seems you were on walker almost immediately and just used wheelchair for transit/trips? Anyway, your diary is great and really you are so brave. You are well on your way to your goal and hope you are feeling better and better each day.
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TheAlchemist

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Re: My Vertical Push with Dr. Debiparshad (Strydes in Femurs)
« Reply #27 on: May 31, 2019, 01:22:13 PM »

Thanks for the reply vertical push!

Another question, can you describe time management and mood management approach? I'm conditioned to being fairly active throughout the day (working, meetings, gym, hobbies, etc.) and I'm trying to mentally prepare myself for losing mobility and sitting/laying in one position for the majority of the day with nothing urgent to do......

Instead of fearing it I'm trying to plan how to use the time effectively.....how are you spending your time these days? I have a growing list of things to do (books to read, musical instruments to learn, online courses/credits I can apply to my career, etc.) What has worked for you? Is there even an opportunity to do this in between the pain, lack of sleep, and PT? 

Thanks

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BeYourBest

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Re: My Vertical Push with Dr. Debiparshad (Strydes in Femurs)
« Reply #28 on: May 31, 2019, 03:34:17 PM »

Great detailed diary, Vertical Push!

I look forward to reading more. Wishing you the best on your journey.

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Kenda

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Re: My Vertical Push with Dr. Debiparshad (Strydes in Femurs)
« Reply #29 on: May 31, 2019, 04:30:32 PM »

Thank you for the reply Vertical,
But did you do a Consultation with Dr Paley or Dr Rozbruch before choosing this Dr ? & did u ever think of saving a bit more & going to paley or paley isnt that special anymore...

Also, whats your goal for femurs ....the full 8 cm or what?
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verticalpush

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Re: My Vertical Push with Dr. Debiparshad (Strydes in Femurs)
« Reply #30 on: June 01, 2019, 04:56:16 AM »

Hi everyone, we've made it to day 8. This is also day #3 of lengthening. There's been some good progress but what frustrates me is that I am entirely dependent on my walker. I've seen videos of people walking completely unassisted and it feels that's still a ways away for me. I guess you could say my walk on the walker is improving by a bit, but it still takes a while to transition from the bed to the walker, and from the wheelchair to the walker. I really didn't see myself using a wheelchair at all past the 3 week mark, so I have a long way to go with physical therapy this week if I want to reach that objective. Pain wise things are okay. I cut out the long term pain medicine, the morphine, and I'm only taking half of a dose of the Oxycodone. Even a short walk around my hotel with the walker has me absolutely worn out by the time I return to the bed. I'm still very tired particularly in the morning. I have to remember that only 1 week ago I had both of my legs broken in half.

[...] I will feel very nervous overall during consult. I tend to get quiet/introverted when I'm nervous so I'll be sure to have information like plans during recovery etc handy so I can talk about that. Great information also on meds!

[...]Oh and thank you for saying that the actual LL surgery is longer than one hour. I saw this on the LimbplastX website and that gave me pause as other doctors (Paley, Mahboubian etc) take at least 4 hours.

[...]You mentioned $73k as the amount you paid, which is really great. I am undecided whether to have the consult (also going for Stryde/femurs) now or wait longer and save more in case I need any of the additional surgeries like iliotibial band release etc.

[...]I was rereading your diary again tonight to see how long you were in wheelchair before moving onto walker, but it seems you were on walker almost immediately and just used wheelchair for transit/trips? Anyway, your diary is great and really you are so brave. You are well on your way to your goal and hope you are feeling better and better each day.

Hello again ActionSpeaks! I hope you don't mind that I snipped parts of your comment to be sure I responded to each part.

Be yourself during the video consult! Good questions are great, it shows you've done your research. Dr. D. loves to go on about the process itself and loves to share his philosophy. Here's something I did to prove this was something I was serious about. I told him I was wearing lifts as we talked and I pulled the lift out and showed him while we were on video chat.

I don't know where they got that 1 hour surgery number from but that is just plain wrong. I figured there's no possible way, and this surgery proved it. Parts of their web site are a little bit optimistic (especially in areas like how many weeks it will be til you're walking unassisted, etc.). I will be sure to share my thoughts with them and hopefully encourage them to change that stuff. I don't think they're intentionally misleading anyone, I just don't think they've had enough Stryde patients to realistically know certain things.

The $73,000 figure includes the IT Band release. They gave me a good discount on PT because I'm going to do most of that at home. You do need to factor in transportation costs between PT sessions, which as I learned today, isn't exactly cheap (~$27 each way on a wheelchair accessible taxi).

Thank you so much for the nice words! I used a walker immediately in the hospital. Wheelchair is only for transport by car or going long distances. I do NOT want to get comfortable using the wheelchair.

Great detailed diary, Vertical Push!

I look forward to reading more. Wishing you the best on your journey.


Very encouraging words, BeYourBest! I truly appreciate it and will keep this diary updated.

Thanks for the reply vertical push!

Another question, can you describe time management and mood management approach? I'm conditioned to being fairly active throughout the day (working, meetings, gym, hobbies, etc.) and I'm trying to mentally prepare myself for losing mobility and sitting/laying in one position for the majority of the day with nothing urgent to do......

Instead of fearing it I'm trying to plan how to use the time effectively.....how are you spending your time these days? I have a growing list of things to do (books to read, musical instruments to learn, online courses/credits I can apply to my career, etc.) What has worked for you? Is there even an opportunity to do this in between the pain, lack of sleep, and PT? 

Thanks


Hi again, TheAlchemist! I was fairly active prior to surgery, going to the gym 4 days a week or so. There is none of that after surgery, at least not the first few weeks. PT is your "activity" for the day and it takes everything out of you. I can't even force myself to wake up early enough to attend the hotel's continental breakfast (although I will try harder tomorrow). I find more alert time towards the end of the day which is usually when I update my diary and reach out to friends. I think this will improve in future weeks though. I'd love to use this time to learn to play the guitar. The pain isn't the biggest negative factor. It's the boredom of laying in one spot. The medicine does hurt your attention span so it's hard to stay focused on one thing for very long. I downloaded some video games to my computer (I'm not a big video game player) but haven't even started playing them yet. I keep telling myself this is the end of week 1, so it'll get easier from here. I sure hope that's right! To give you an example, I got some of the best work news today I could've possibly received and I've been waiting at least 6 months for this. Soon as I got that news I took an hour nap. I'm happy about it, but there is no celebration right now haha. Your mind is focused on the recovery process.

Thank you for the reply Vertical,
But did you do a Consultation with Dr Paley or Dr Rozbruch before choosing this Dr ? & did u ever think of saving a bit more & going to paley or paley isnt that special anymore...

Also, whats your goal for femurs ....the full 8 cm or what?


Hi Kenda, I reached out to Paley and Dr. M in LA. I have no regrets going with Dr. D., but I should've also reached out to Dr. Rozbruch because I believe I read somewhere that someone was able to successfully use insurance to cover part of the surgery. Paley is just too expensive and when I contacted Dr. M it was before he lowered his prices. Dr. D. was the cheapest by about $20,000 or so. No brainer decision for me.

Do your due diligence - if Dr. D. and Dr. M. are closer in price it would make the decision a little more close. I hope this first Dr. D. diary gives people some datapoints to use when weighing the options. I went into this almost completely blind -- but can confirm I still have two legs attached! :)
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