Limb Lengthening Forum
Limb Lengthening Surgery => Limb Lengthening Patients Experiences => Topic started by: Calic on December 25, 2024, 10:31:12 PM
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After 11 years I decided to do a second leg lengthening since the desire to be 'tall' never left me. The thought of a second LL always lingered in my mind, but I struggled to justify the cost until now. For some time I was considering external femurs but the fact that no good surgeons offer it for cosmetic purposes along with it being more damaging made me pass on it. Doing the surgery with internals in my twenties would have required sacrificing a lot of money for just a 4 cm gain which wasn't worth it to me at 178 cm. If my proportions could handle 8 cm then I would have done this earlier. I am at a point in my life now where the cost doesn't matter to me and I recently got laid off from my job so I figured at 35 years old it was now or never for me to do this.
I had surgery on my right leg on 10/30/2024 and had my left leg done on 11/6/2024.
Lengthening goal
Left leg: 4 cm
Right leg: 5.1 cm
I found out my right leg is 1.1 cm shorter than my left, so I’ll be lengthening it more to match. I should end up just slightly under 6' which will be enough for me to look tall even though I am not actually tall. I am not too concerned with hitting the 6' mark since my spine will shrink with age making me shorter which will also further worsen my proportions. I am certain if I maxed out the nails to be over 6'1 I would not look good or be happy. I can always just buy a small height increasing shoe insert to put me over 6'.
I also found out my right leg is not completely straight which could lead to knee problems later in life so Assayag suggested correcting my femur and securing it with a metal plate once I am done lengthening.
Why I chose Assayag at ICLL
I think this is the best, low-cost option in the United States if you are staying in the Hackerman-Patz house and have good health insurance (most BCBS PPO plans) since it will likely cover physical therapy and nail removal. I found more information online regarding Assayag so I went with him instead of Conway. Some of the patients here chose Conway over Assayag because she has more years of experience which I don't feel matters beyond a certain threshold. They are both on the same team and well connected within the industry so I'm sure either of them can handle anything that happens.
I was originally thinking of going to Birkholtz but after factoring in the flight cost and nail removal I think it is still cheaper to go with Assayag. I also liked the fact that I could drive to ICLL so I could bring more personal items with me to make my stay more pleasant. The only negative is that this is more of a DIY kind of lengthening rather than a full service package like what Birkholtz offers. I'll give an overview of my experience and compare my perceived differences with Birkholtz. Bear in mind any of the costs or processes I mention could be different for future patients.
Overall surgery cost
Last month a patient visited the HP house who was planning surgery in January told me he was quoted 67k (with Conway). The doctors have limited control on what the SurgiCenter costs are and they can vary some from week to week. I paid 61k for my surgery back in October.
What makes the cost of the surgery low here is that it is done at the SurgiCenter on one leg and then a week later the other leg and the patient is discharged right after surgery. This avoids spending time in a hospital and also lessens the risk of running into a major issue that would require hospitalization. At first I thought doing one leg at a time was weird and it'd be better to do both at once to get it over with but I've changed my mind on that as it offers many advantages:
- Very low chance of fat embolism syndrome
- Less chance of DVT and PE
- Lesser dose of anesthesia required
- No urinary catheter required
- Allows you to have 1 good leg to care for yourself so you don't need a caretaker
Initial consultation Zoom call
My insurance covered about half of it, I had to pay about $250.
Transportation
Uber can be used for any transportation needs except for the return from the SurgiCenter. Returning from the SurgiCenter requires an adult to discharge and transport you. Assayag will recommend using Karen Sorenson (https://www.bmorewell.com/about (https://www.bmorewell.com/about)) which cost me close to $200 for each surgery. Other medical transportation services might be cheaper but I think it is best to go with her since she has been assisting Assayag patients for years and is trusted.
For going to the SurgiCenter for the 2nd surgery I don't feel it is necessary to schedule a medical transportation service, I took an UberX Share there and paid $25 including the tip. The distance from the SurgiCenter exterior entrance to the inner entrance is very short (just past the elevators after entering the building) so I had no problem fitting my foldable walker in my Uber and getting inside using my good leg.
(https://live.staticflickr.com/65535/54219055230_2736ace492.jpg/)(https://live.staticflickr.com/65535/54217746372_21d21ec82a.jpg)
An electric mobility scooter is required for biweekly appointments, prescription refill pickups, and PT (if you are doing it at the hospital) because everything on the hospital campus is on a large slope. Before my surgeries I tried to go up it with my wheelchair as a test and was unable to do it safely and almost fell over backwards! The second picture is looking out from the HP house gate to the building the biweekly appointments are at. The other picture is the slope on the left side of the building, turning right at the blue canopy leads to the building entrance. Continuing straight past the blue canopy leads to the hospital entrance, where you'll find the pharmacy, ATM, and cafeteria.
(https://live.staticflickr.com/65535/54218042378_79aaba1ca3.jpg/)(https://live.staticflickr.com/65535/54218042593_873f4be781.jpg/)
Prescriptions
Prescriptions are provided for Vitamin D, Calcium, Acetaminophen, Oxycodone, and Celecoxib which will all be cheap with insurance/GoodRx. The only costly medication is the blood thinner and there are two options. The pill, Rivaroxaban (Xarelto), costs around $500 for a 30 day supply which insurance doesn't always cover. Alternatively, the injection, Enoxaparin (Lovenox), is around $130 using insurance/GoodRx for a 30 day supply. Sign up on their web portal to easily place refills and monitor the status.
My insurance was not going to cover the pill and I don't mind needles so I went for the injections. Injecting it into your stomach fat kind of feels like a bee sting for a few minutes, nothing too bad. Some bruising may occur around the legs days after surgery, nothing to be worried about.
(https://live.staticflickr.com/65535/54218170070_d05e3431f0.jpg)
(https://live.staticflickr.com/65535/54218043783_cecf6e9a80.jpg)(https://live.staticflickr.com/65535/54218216765_94070f27e2.jpg)
After surgery care
Birkholtz keeps patients in the hospital for 14 days whereas the SurgiCenter is a quick in and out within several hours so the patient must care for themselves unless they hire a caretaker or bring a guest with them. On day 1 after returning from surgery I was able move between my wheelchair and bed to swap out my ice packs and go to the bathroom. I had to use my arms to move the leg that had surgery which was not pleasant but it is doable.
DVT and PE prevention
- Blood thinners are used throughout the entire lengthening every day except the day of surgeries and 1 or 2 days before your 2nd surgery.
- The compression devices provided from the SurgiCenter should be used on the days the blood thinner is not used. If patients are paranoid they could keep using them but it is probably not needed.
- For a few days after surgery your legs should be elevated.
- Do daily physical therapy.
(https://live.staticflickr.com/65535/54216908472_269b04c98e.jpg/)
Daily Physical Therapy
- Standing with a walker within implant weight limits - 15 min
- Stationary biking - 45 min
- Stretches - 3-4 times a day or more
Liability Policy
One thing that caught me and several patients off guard is that the HP house has a liability policy requiring you to have a caretaker after surgery. I ended up just telling the manager, Amy, at the HP front desk that Karen was going to be my caretaker. Following this I just texted Karen and emailed Amy for a couple days after my surgeries letting them know I was fine. It might be possible to ask to sign a waiver instead of doing this.
Mobility devices
Reach out to the HP house to see if any patients are leaving around the time you are arriving so you can buy their equipment, there might also be extras left by previous patients as well. If they don't have anything then just let them know you are going to order items and have them shipped to the HP house ahead of your arrival.
Meals
Baltimore has a plethora of grocery and prepared meal options, and anything can be delivered to the HP house. Since the rooms have full size fridges and I wanted to eat semi healthy I decided to go with Walmart Inhome grocery delivery since it has no tip, markup, or delivery fee. There were some mentions of trying to get a special rate on a premade meal service, CookUnity I think, so this might be an option for future patients.
Accommodations
I highly recommend reserving a room at the Hackerman-Patz house since it is on the hospital campus within close distance to everything you need and is crazy cheap, it is currently only $15 a night! Alternative accommodations would substantially increase your costs and would likely be less enjoyable since you wouldn't have other patients to talk to. The HP house has kind of become a cosmetic leg lengthening guest house which mostly contains Assayag and Conway patients, there are close to 20 rooms. It is the patients responsibility to provide all necessary household supplies, do their laundry, and clean their rooms. Family members or a friend can stay with you to care for you. The rooms are well furnished and include the following:
Rooms
- 2 beds and a cot
- Full size fridge
- Microwave
- 5 cup coffee maker
- Large kitchen sink
- Dining table with two chairs
- Small circular coffee table
- Electric reclining chair
- Large dresser
- TV
Common Areas
- Gated with free parking for guests
- Large trash bins to put your trash in at the stairs on both ends of the building
- Self-service laundry on the first floor
- Living room with a large TV for streaming and a medium TV for connecting a gaming console
- A basic kitchen without any oven, stove, or toaster but you can bring portable ones to place there (appliances are not allowed in your room)
- Courtyard with outdoor tables and chairs
- Gym (open 24/7)
(https://live.staticflickr.com/65535/54217820481_c77aa38554.jpg/)(https://live.staticflickr.com/65535/54218042949_c9626c6dd8.jpg/)
Internet
Internet is provided by the hospital's guest network. Wireless is okay for watching videos or surfing the web but I had issues with it dropping randomly and having very low bandwidth at times. If you are working remotely or gaming you may want to investigate other options.
My room has an Ethernet jack next to the phone jack which gave me a solid wired connection to the guest network at 200 Mbps download so this might be an option in some rooms.
I have Spectrum mobile (uses Verizon network) and was getting max signal bars and 5G bandwidth in my room so I assume any Verizon based hotspot services would work well here. Visible (https://www.visible.com/ (https://www.visible.com/)) might work which provides unlimited 10 Mbps hotspot and offers a 15 day free trial to try.
Physical therapy
This may be partially covered by insurance otherwise it is $125 per session with Moshe Roth (https://mrothpt.com/ (https://mrothpt.com/)) who recommends PT three times a week. Moshe will come to your room or you can meet in the HP gym. If you are having PT at the hospital you will need to use an electric scooter to get there.
Pre-op appointment
Proportions
Assayag will do an x-ray of your lower body and give you your tibia and femur measurements so you can best decide which segment to lengthen and for how much. Aside from this he doesn't do any other kind of proportions analysis. I was shocked when he told me that he doesn't believe in overall proportions and there is enough variation in nature that it doesn't matter. I agree with him for a single lengthening but not for a second lengthening.
Nail size
Depending on your bone diameter he may give you a choice of nail size between the 10.7mm (50 lb limit) or 12.5 mm (75 lb limit). I chose the 75 lb nails so I wouldn't have to offload as much weight on my arms when standing and there'd be less risk of damaging the hardware.
Equipment
- Use the list on Height Journey's website (https://heightjourney.com/equipment/ (https://heightjourney.com/equipment/)).
- A door-hanging mirror might be useful for checking your proportions; one can be ordered or picked up from a nearby Walmart.
https://www.walmart.com/ip/Mainstays-Over-The-Door-Mirror-with-hardware-14-25IN-X-50-25IN-Black/946883533 (https://www.walmart.com/ip/Mainstays-Over-The-Door-Mirror-with-hardware-14-25IN-X-50-25IN-Black/946883533) - Consider buying two analog scales, one for each leg, to make sure neither one has too much weight on it when you stand. For some reason it never occurred to me I would need two of these until I was doing PT with Moshe in the HP gym and he brought out two scales. :o I bought these cheap ones from Walmart.
https://www.walmart.com/ip/Taylor-9-8-x-9-8-300-lb-Analog-Dial-Bathroom-Scale-with-Dial-Display-Black/1912821848 (https://www.walmart.com/ip/Taylor-9-8-x-9-8-300-lb-Analog-Dial-Bathroom-Scale-with-Dial-Display-Black/1912821848)
Planning for surgery
Up to 1 year out
- Do a consultation with Assayag or Conway online and/or in person.
- Schedule a surgery date.
- Reserve a room at the HP house well in advance, I think the wait list is currently several months long.
- Find a good health insurance plan and check if it covers PT with Moshe or the hospital.
- Improve your health so your blood work, chest x-ray, and EKG will be good for surgery.
- Losing extra fat might be a good idea so when you are standing with a walker you do not have to offload as much weight to your arms.
- If you are working remote, save up PTO for 2 weeks minimum and preferably 4 weeks.
- If you are bringing family or a friend make sure they are available for your surgery.
I'm not sure if you can choose a specific room at the HP house but here is some quick info:
- A downside of the 2nd floor is that you will need to take the elevator to reach all the common areas.
- 1st floor rooms near the lobby might be noisy if people are in the lobby talking, watching TV, or playing the piano so getting a room further down the hall might be better.
- There are some large size rooms which are probably good if you have a guest with you but if you are by yourself I am not sure they would be the ideal choice because the fridge and countertop might be far away from each other, in the small rooms they are right next to each other. I found the extra travel distance in my room to be annoying.
(https://live.staticflickr.com/65535/54218041553_53cff86c5d.jpg/)(https://live.staticflickr.com/65535/54219163586_12c1c4a4fe.jpg/)
(https://live.staticflickr.com/65535/54219387374_6728560248.jpg/)(https://live.staticflickr.com/65535/54219386228_cba2c87b81.jpg/)
3 weeks out
- Be sure to check your spam folder to ensure you don’t miss any important emails about your surgery.
- If Karen will be driving you provide her your surgery date.
- Provide Moshe or Sinai hospital PT your insurance info and surgery date so a prior authorization can be submitted and PT can be scheduled.
- If you are bringing guests, inform the HP house.
- If you are going to use a care taker then get that scheduled.
- Lab work must be done within 3 weeks of surgery to be valid, otherwise you will need to do it again.
- Payment to Assayag's group for anesthesia, doctor fee, and pre-op x-ray appointment, this will be roughly 25% of the total cost. This can be paid with credit card (no fee so using a rewards card would be good) or wire transfer.
- Payment to the SurgiCenter group with credit card (3% fee) or wire transfer (preferred).
Arrival
- Check in to the HP house and meet with some of the patients during the day or evening.
- Go to your pre-op appointment.
- Get your room situated with food, supplies, and equipment.
- Pick up your prescriptions from the hospital pharmacy.
- If Karen will be driving you provide her your surgery time once you get it.
Overall experience so far
Assayag and Conway treat their cosmetic patients with the same level of care as their trauma patients and are happy to work with your insurance if you have non-cosmetic medical issues that need fixing. In addition, they make sure their surgical incisions are small and they cosmetically close them tightly using dissolvable stitches!
I found Assayag, Chris (Assayag's physician assistant), Moshe, Karen, Yanni (ERC support contact), and Bill and Amy (HP staff) all to be highly responsive, organized, and personable. They take the time to address your concerns and make sure your experience is good. The only negative part of my experience was the situation around needing a caretaker that I mentioned above. If you are at the HP house there are plenty of nice people (HP staff, patients, guests of patients) to keep you company so you won't be doing this alone.
I'll be doing future posts on my progress, proportions, and personal thoughts related to LL. Hi-res versions of my pictures can be viewed here: https://www.flickr.com/photos/202003759@N04/ (https://www.flickr.com/photos/202003759@N04/)
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How does doing a single side reduce the chances of DVT and PE especially if you do the other leg a week after the first?
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Hi-- I am planning on going with Assayag in march.
Thank you so so much for this thorough write up! You answered questions I have been HOUNDING this forum for, such as what equipment is available at the surgical center / HP house and what not.
One question: are the rooms private or do you share with a roommate? Asking because there are two beds. Thank you!
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How does doing a single side reduce the chances of DVT and PE especially if you do the other leg a week after the first?
I'd assume a week in between surgeries reduces the total amount of inflammation the body has to deal with in a single time frame and having full mobility of the other leg will help with the blood flow on the operated leg to a certain extent. In my consultation with Assayag he said most of his patients who had blood clots within the past few years had them between 4 and 8 weeks after surgery so maybe this doesn't really reduce it by much.
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Hi-- I am planning on going with Assayag in march.
Thank you so so much for this thorough write up! You answered questions I have been HOUNDING this forum for, such as what equipment is available at the surgical center / HP house and what not.
One question: are the rooms private or do you share with a roommate? Asking because there are two beds. Thank you!
I believe they are private for every patient. The HP house was originally designed so a patient's family could stay with them, there are several patients here who have family members staying with them.
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61k is a good price for dr Assayag. When you say 2-4 weeks PTO does that mean you can return to work after 4 weeks? How long must you stay in Baltimore? How frequent are the in person visits with the Dr? I plan to do femur with Assayag in the next few years but the furthest east I plan to live would be Chicago and most likely ideally I would end up in California which would make flying out expensive and annoying.
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61k is a good price for dr Assayag. When you say 2-4 weeks PTO does that mean you can return to work after 4 weeks? How long must you stay in Baltimore? How frequent are the in person visits with the Dr? I plan to do femur with Assayag in the next few years but the furthest east I plan to live would be Chicago and most likely ideally I would end up in California which would make flying out expensive and annoying.
The 2-4 weeks of PTO was just a recommendation I came up with based on my experience. For the first 4 weeks the constant pain and OxyCodone screwed up my sleep schedule and when I was awake it was hard to focus so working would have been difficult. In theory someone could take the morning off of work to get surgery and in the afternoon return to their remote job.
I'm not sure on his current policy on staying in Baltimore but in an interview from 2020 he said he wants patients to be local for 2 weeks to make sure the rods are functional and your legs are tolerating the lengthening okay. I'd assume from that point you'd need to get x-rays done back home every 2 weeks to send to him.
If you're local, visits are scheduled every two weeks. If you're remote, you may not need to return until the rod removal, unless complications arise.
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Do you recommend someone staying in HP house to get a full-time caretaker?
If so, for how long?
And how were you able to handle essential things such as going to the bathroom and getting water for the first two weeks?
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Do you recommend someone staying in HP house to get a full-time caretaker?
If so, for how long?
And how were you able to handle essential things such as going to the bathroom and getting water for the first two weeks?
You’re not 100% crippled. You can post with your arms on something sturdy to transfer from bed to scooter, or scooter to moving your ass cheeks from the scooter to toilet by posting on something sturdy like your scooter chair with one arm, and the sink counter with the other.
Once you get used to transferring it’s prettt easy to do everything from your electric scooter. Like if you need water just transfer and drive to your fridge, simple as that. If you need to pick up your groceries or move items you use the feet area of your scooter. Really the electric scooter makes everything easier. Almost a must have. I’m using a loaner one, but some people are selling there’s for around a hundred bucks I’ve seen
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Do you recommend someone staying in HP house to get a full-time caretaker?
If so, for how long?
And how were you able to handle essential things such as going to the bathroom and getting water for the first two weeks?
No, I don't feel a caretaker would be needed for anything.
If you do get one, part time for the first two weeks or just for several days after each surgery.
Everything is easily accessible in your room and transitioning to and from the wheelchair and toilet seat isn't too difficult. It was a bit painful and challenging since I had to use my arms to carefully move the leg that was operated on several days after each surgery. Electric scooters are easier to transition with since you can adjust the seat height to match your bed and transition sideways off the seat unlike wheelchairs which have large wheels you need to navigate over. For the first week you can use a walker to get around fairly well since you have one good leg you can full weight bear on. My toilet is low enough with enough space on the sides for my legs that I just roll my wheelchair over the front of it and pee down into it so this made going to the bathroom fairly easy.
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I'd assume a week in between surgeries reduces the total amount of inflammation the body has to deal with in a single time frame and having full mobility of the other leg will help with the blood flow on the operated leg to a certain extent. In my consultation with Assayag he said most of his patients who had blood clots within the past few years had them between 4 and 8 weeks after surgery so maybe this doesn't really reduce it by much.
didnt one giotikas patient due 4-8 weeks after surgery as well?
it is odd because in other ortho surgeries they say the max risk is in the first 2 weeks. maybe LL is more risky for PE!!
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didnt one giotikas patient due 4-8 weeks after surgery as well?
it is odd because in other ortho surgeries they say the max risk is in the first 2 weeks. maybe LL is more risky for PE!!
Yes, at around week 7.
It seems like that might be the case. Assayag mentioned at Cyborg 4 Life's 2024 Surgeon Summit that he's seen enough blood clots beyond 4 to 6 weeks to make him think there might be something unique to the stretching of blood vessels with LL that increases the risk of clots.