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[Calic]

I saw a doctor about removing the hardware in my legs since I still experience a lot of pain when jogging and I am unable to run. The pain seems to be going down very slowly over time but I would like it completely gone. He gave me three options:

1.) Wait longer to see if the pain will go away completely
2.) Remove the rods and screws
3.) Remove only the screws

He advised against removing the rods as it is a traumatic surgery that involves breaking the top of the tibia and messing with the patella tendon. The rods are inserted correctly and are deep enough inside that it is not likely it would be causing pain. He said it could take up to 3-4 weeks before I could full weight bear and there is no guarantee it would reduce the pain I feel.

He did recommend removal of all the locking screws. He said it would be a minor surgery so I would be able to weight bear the next day and just take it easy for 7-8 weeks for the screw holes to fill in. He said the rod is locked in place inside the bone and it will give support so there is less chance of stress fractures around where the screws will be taken out.

I asked if there were any risks with leaving the rods in for life and the answer was the same as what has been said on the forums before. He said the bone marrow inside the tibia bone for adults is mostly composed of fat and water and having the rod take up that space has no negative effect on the body. I asked about the release of metal ions in to the body and he said it is not a big concern for metal that is inside the long bones, it is more of a problem with metal that is around joints.

I have scheduled surgery for October 16th so I will post again with the outcome. Attached are some x-rays that were taken.

[Polycrates.]

This is in the USA? Do you have x-legs?

[Calic]

This is in the USA? Do you have x-legs?

Yes, I am having the screws removed in the US.

No x-legs, I have seen 2 orthos and both said my legs were straight by looking at the x-rays. I think my right leg is not 100% straight compared to the left but it is close. I'll ask my ortho before surgery what he thinks of the right leg.

[Taller]

How did the doctors react when you informed them that you'd done leg lengthening.

[Calic]

How did the doctors react when you informed them that you'd done leg lengthening.

The first ortho I saw did not make any comment about it when I told him and I did not have a good experience with him. He did not take me seriously when addressing my concerns. I asked him if my legs were straight and if my fibula's had migrated at all and his response looking at my x-rays was "these are abnormal legs, the natural integrity has been altered". Duh... so I then asked if there was anything wrong to the extent I would have future issues and he said they were fine.

I described the pain I feel as sharp shooting pain like the hardware is going to shoot through my legs when I try to run and it has been like this since coming home. He then proceeds to ask me questions like: "how long have you been running for?" and "how long do you run each session?". He seemed to think pain was from not doing enough physical therapy and it would go down with physical therapy and I should wait another year for surgery.

The second ortho I saw was good and gave me the 3 options above and recommended removal of all the screws as the next step. When I told him I had leg lengthening done in India he asked me if it was because of money and then commented that health care in the US costs too much.

[Taller]

I'm glad that you found an orthopedic doctor who can take proper care of you?

In the end, was there any fibular migration in your legs?

Was there anything else wrong with them besides the issues with the screws?

Did you have to pay anything substantial out of pocket to talk to US doctors about the effects of your voluntary leg lengthening? Do you know if any insurance plans cover getting treatment in the US for botched lengthening jobs done overseas??

[Calic]

In the end, was there any fibular migration in your legs?

Was there anything else wrong with them besides the issues with the screws?

Looking at my old x-ray from when I had lengthened 9 mm it looks like a small amount but the doctor said it was nothing to worry about. There is nothing wrong with my legs.

Did you have to pay anything substantial out of pocket to talk to US doctors about the effects of your voluntary leg lengthening? Do you know if any insurance plans cover getting treatment in the US for botched lengthening jobs done overseas??

Not yet, the appointments I have had so far and the x-rays have been covered. As far as surgery being covered I do not know. The diagnosis code I was given by my doctor is just described as "painful hardware removal" and my insurance said it should be fully covered and asked no questions about it. My doctor thinks if the hardware is causing pain then insurance should cover removal of it regardless of why or how the hardware was put there. I don't know if a year after surgery I might be investigated or asked more questions about it and end up having to pay for it. I have heard of people getting burned and having to pay the bill for operations that were not cosmetic related.

As far as other insurance plans covering botched ll surgeries I don't know. The US health care system is pretty screwed up - you really have no idea how much any operation costs beforehand or if something will be covered entirely or not.

[Taller]

The US health care system is pretty screwed up

Amen to that!

[Polycrates.]

The second ortho I saw was good and gave me the 3 options above and recommended removal of all the screws as the next step. When I told him I had leg lengthening done in India he asked me if it was because of money and then commented that health care in the US costs too much.

Funny about the comment about exorbitant and gratuitous costs for medical care in the US. I can't find a single soul in Canada knowledgeable in Ilizarov and I was in Dr Paley's area for a while this month. The doctor had seen treated me in a similar manner to the first one you saw. His answers were nonchalant and indeterminate.

 I was literally on Paley's door step, but I couldn't bring myself to paying 1200USD for a mere evaluation. I'm going to try really hard to find a specialist in Canada when I return home. I know smallguy found one in Vancouver, but he doesn't frequent the board anymore. If I can't find one, I'll probably end up going to see Paley just for the peace of mind, despite the ridiculous price.

[Calic]

Funny about the comment about exorbitant and gratuitous costs for medical care in the US. I can't find a single soul in Canada knowledgeable in Ilizarov and I was in Dr Paley's area for a while this month. The doctor had seen treated me in a similar manner to the first one you saw. His answers were nonchalant and indeterminate.

 I was literally on Paley's door step, but I couldn't bring myself to paying 1200USD for a mere evaluation. I'm going to try really hard to find a specialist in Canada when I return home. I know smallguy found one in Vancouver, but he doesn't frequent the board anymore. If I can't find one, I'll probably end up going to see Paley just for the peace of mind, despite the ridiculous price.

Do you have any concerns for your legs right now or are you just curious to know if there is anything wrong? Paley is one of the best LL doctors in the world so if you feel something may be wrong it is probably worth it to see him.

I do not think there are as many doctors who are knowledgeable in LL in the US as I thought. Initially I was thinking lots of doctors would do LL for medical reasons but I guess not. I could not find any doctor in my state that had extensive experience with LL.  The first doctor I saw only does LL for children so I thought he would be a good doctor to see but it did not turn out so good.

I asked my current doctor who did the screw removal about my tibia, femur, and overall leg lengths as well as my leg proportions and he said he does not do the LL procedure so it would be best I see a doctor in another state who is a 3 hour drive away for me to answer those questions.

[Calic]

Screw removal was successful!

I have not seen the incisions yet but my doctor said that the screw locations shifted due my soft tissues so the old incisions from the screw insertions could not be used. I will post pictures later. I am in no pain or discomfort and I am walking. I will see how things go once the pain medication wears off.

I had lots of good conversations with the hospital staff today. It is not every day you get a patient who has done LL for cosmetic purposes . In my experience, all of my friends and family I have told about my LL think it is cool and have had a conversation with me about it. As far as telling random people or acquaintances about my LL most comment that it is cool but have no interest in talking to me about it unless they themselves are in a medical related field, then they ask a ton of questions!

At this point my biggest concern is that my pain issue will not be fixed and I may permanently have pain or have to wait a very long time for it go away. My second biggest concern is that my insurance is not going to cover the procedure and I am going have to pay for it. My insurance said based off the CPT code it would be fully covered and since I share a plan with my parents who have met the yearly deductible already I will pay $0 for everything.

[Polycrates.]

Congrats, Calic. Too bad you couldn't get any answers to your concerns. Are you going to see the other guy?

[Calic]

Congrats, Calic. Too bad you couldn't get any answers to your concerns. Are you going to see the other guy?

I will see the other doctor if I am still having pain or other issues.

[Calic]

How my recovery went after surgery:

Same day - No pain and easy walking (numbing injections in screws holes were highly effective ).
Day 2 - Constant 3-4/10 pain at rest and 6-7/10 pain when walking.
Day 3 - No pain at rest and 3-4/10 pain when walking.
Day 4 - No pain at rest and 1-2/10 pain when walking.
Day 5 - Left leg feels normal when walking, right leg has 1-2/10 pain when walking.
Day 6 - Right leg has no pain but has weird feelings like tight skin, shifting tissue, and numbness.
Day 7+ - Both legs feel normal now, walking down cement steps and light jogging is pain free.

Additional discussion with doctor:

My patella tendons were covering the screws so they had to be manipulated a bit to get the screws out so I need to take it easy since I could rupture the tendons. The initial screw incisions were far off from where the screws actually were. My doctor tried to use the same incision sites initially but discovered the screws shifted too much so he made new incisions to remove all the screws. The 6 months of soft tissue stretching and muscle atrophy/hypertrophy caused this. The screws near my ankles were close to the entry incisions, not much shifting probably occurred after my lengthening phase was done.

I recently spoke with another Sarin patient who has the rods and screws still in who can sprint on pavement with zero pain. I think in my case my soft tissues must have shifted in such a way to make the screws interfere with the patella tendons.

I will post pictures in a couple months of all my scars. The scars that bother me the most are the middle pin site scars since they are easily noticeable and are protruding slightly. I am going to look into having these revised somehow.

[Taller]

Hi Calic. I'm so glad to hear that you are doing better without the screws. Did your second doctor say that your fibula was still properly aligned?

How is your new height treating you? Would you say that you are satisfied with the procedure overall, even after this screw fiasco?

[Calic]

Hi Calic. I'm so glad to hear that you are doing better without the screws. Did your second doctor say that your fibula was still properly aligned?

Yes, he said my fibulae looked normal to him but I would need to see a LL specialist if I wanted an in depth examination of my legs.

How is your new height treating you? Would you say that you are satisfied with the procedure overall, even after this screw fiasco?

I love it! I no longer think about or care about my height. I have had some people tell me I look tall even though I am only average height.

For me LL was well worth it and I never would have been able to be happy if I hadn't done it. Overall I am satisfied with my LL journey - the screws in reality were only a minor hindrance in the grand scheme of all that could go wrong with LL.