My Vertical Push with Dr. Debiparshad (Strydes in Femurs)

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Hi, Verticalpush, how it's going? Are u was 174 at your lowest before surgery?

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

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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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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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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.

Quote from: ActionSpeaks on May 30, 2019, 06:58:33 AMGreat 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.

Quote from: Leggs on May 30, 2019, 11:48:53 AMverticalpush-

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.

Quote from: TheAlchemist on May 30, 2019, 12:28:41 PMHey 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!

Quote from: YungGud on May 30, 2019, 12:35:41 PMHi, 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.

Quote from: Kenda on May 30, 2019, 03:34:36 PMThank 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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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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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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Great detailed diary, Vertical Push!

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

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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?