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Author Topic: How fked am I? What to do about tibial misalignment?  (Read 1121 times)

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suddenurge

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How fked am I? What to do about tibial misalignment?
« on: June 09, 2019, 03:12:37 PM »

Hi guys,

I had surgery only 2 months ago. I chose tibial lengthening with the LON method. I only wanted 5cm, so it seemed to be a fairly safe option with the internal nail supposedly preventing misalignment. I have just finished lengthening around 5 cm and had my tibias x-rayed (see below). Anyway, as you can see in the x-rays the cut of the left tibia was very poor and left me with very little posterior bone above the cut. On the right tibia, the cut was a little bit better but left me with a posterior fracture where the yellow arrow is. As a consequence, it seems that there is not enough strong posterior bone on either leg to guide the upper part of the tibia along the nail. I suppose, due to the tightness of muscles, ligaments, and lack of bone to force the tibia above the cut to stay in alignment with the nail, it has become misaligned with the tibia below the cut by about 10 degrees on both legs (the angle should be about 90 degrees, I assume). As a side-note, the misalignment is also clearly visible from the outside as big hard bumps in the skin (no pics, sorry). Also, the knees are sore all the time, especially the left knee. I think this has to do with how the external fixators were positioned on my legs. It is as if the angle between where the fixator is attached to my ankle and where it is attached to my knee is wrong. Especially on the left leg, it seems as if it hinders me to fully extend the leg.

x-rays:

https://imgur.com/sP3Rl3S
https://imgur.com/bS4g1C0

I don't understand how this could happen. The doctor told me before surgery, that I have very good and strong bones, so it must be that he did not apply enough force to break the tibias cleanly. Also, I think he cut the bone too high. What is the point of having an internal nail to avoid misalignment, when there is not enough bone around the nail to force the tibia in alignment? Of all the complications, I contemplated before surgery, this never ever crossed my mind, and I cannot seem to find something similar on this forum. I will not write the doctors name here at this point, because I am dependent on his care, and I am not sure he approves. I hope you understand.

Unbelievably, the doctor has told me that I do not need to worry, as the new bone will magically correct the align by itself. But I am not sure what he means by that. Sure new bone will connect the parts somehow. But I highly doubt that it can bring down the angle from 10 to 0 degrees because it seems that this would require some serious force to overcome the opposing forces that facilitated the misalignment in the first place. I am deeply worried that if this will heal with the 10-degree misalignment, as I cannot stand straight. After consulting with an orthopedist that is not a LL specialist, he expressed the same concern and said if the misalignment is not reversed, I will not be able to extend my lower leg fully and will, therefore, have a permanent slight bend in my knees. Also, I suppose, having a misalignment will lead to stress on joints and back because of improper load bearing?

Has anyone had a similar problem? What can be done to resolve this? How much time do I have to fix this before it consolidates with misalignment? I would really appreciate if the community would give me some solid advice that I can bring up when I talk to the doctor next week.
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sylar94

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Re: How fked am I? What to do about tibial misalignment?
« Reply #1 on: June 09, 2019, 03:30:37 PM »

who is your doctor? at least PM me
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PANDA:BEAR..

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Re: How fked am I? What to do about tibial misalignment?
« Reply #2 on: June 09, 2019, 03:45:07 PM »

Which Country did you get your procedure ? I'm sorry to see you in difficulty...
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Great321

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Re: How fked am I? What to do about tibial misalignment?
« Reply #3 on: June 09, 2019, 04:04:30 PM »

What did the other doctor say what you should do now?

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Apoplectic

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Re: How fked am I? What to do about tibial misalignment?
« Reply #4 on: June 09, 2019, 05:34:21 PM »

Please pm me the name of the doctor.

I'm very sorry you're going through this and I wish you the very best.
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cobalt

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Re: How fked am I? What to do about tibial misalignment?
« Reply #5 on: June 09, 2019, 06:45:28 PM »

You might have to shorten it back in place as your original bone, let it heal, then remove everything. Then discontinue this method. This is the reason people don't use the single fixator opposed to the spatial frame which can fix misalignment.

As you do not have callus yet, this can be fixed. Speak to your doctor again saying you have sought other opinions of other doctors, he needs to look at it again and have other options ready for you.
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sylar94

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Re: How fked am I? What to do about tibial misalignment?
« Reply #6 on: June 09, 2019, 07:04:22 PM »

You might have to shorten it back in place as your original bone, let it heal, then remove everything. Then discontinue this method. This is the reason people don't use the single fixator opposed to the spatial frame which can fix misalignment.

As you do not have callus yet, this can be fixed. Speak to your doctor again saying you have sought other opinions of other doctors, he needs to look at it again and have other options ready for you.
What do you mean by single fixator? He did LON, so he used a frame
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cobalt

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Re: How fked am I? What to do about tibial misalignment?
« Reply #7 on: June 09, 2019, 07:05:30 PM »

The xrays show monorail.
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sylar94

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Re: How fked am I? What to do about tibial misalignment?
« Reply #8 on: June 09, 2019, 07:07:45 PM »

The xrays show monorail.
you're right
cobalt, do you think this can happen with stryde?
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cobalt

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Re: How fked am I? What to do about tibial misalignment?
« Reply #9 on: June 09, 2019, 07:40:39 PM »

His issue arise from the surgeon's skill(cut too high, fragmented pt's bones, muscles pulling it out of alignment) and choice of method(monorail), which are poor in this case. The monorail cannot fix it like a TSF for instance can.

There will be be some varying degrees of misalignment with all internal nails the more one lengthens but Precice and Stryde are the top surgeons' choices for safety and results with least risks to patients. Precice and Stryde are engineered so that just about every competent surgeon can execute it the same. The surgeons are also vetted and initially supervised by Nuvasive team.
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PANDA:BEAR..

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Re: How fked am I? What to do about tibial misalignment?
« Reply #10 on: June 09, 2019, 09:23:53 PM »

His issue arise from the surgeon's skill(cut too high, fragmented pt's bones, muscles pulling it out of alignment) and choice of method(monorail), which are poor in this case. The monorail cannot fix it like a TSF for instance can.

There will be be some varying degrees of misalignment with all internal nails the more one lengthens but Precice and Stryde are the top surgeons' choices for safety and results with least risks to patients. Precice and Stryde are engineered so that just about every competent surgeon can execute it the same. The surgeons are also vetted and initially supervised by Nuvasive team.

The misalignment will be very slight .. with the Precice and Stryde ... but safety results will be high
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notatroll

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Re: How fked am I? What to do about tibial misalignment?
« Reply #11 on: June 09, 2019, 11:09:56 PM »

You have the EXACT same complication that Cooper had in his tibia, done with Fitbone in Spain. This is PROCURVATUM. Cooper's was very bad according to Paley and Rozbruch. He couldn't extend his leg and thus he couldn't walk, even when his other leg hadn't been operated yet. Other patients had milder forms of procurvatum. Yagen had procurvatum too but he also had a very very bad fibula misalignment (he cropped out the xrays so that readers of his diary remained unaware of it).
You need to have PROCURVATUM corrected ASAP. When did you finish lengthening?
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suddenurge

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Re: How fked am I? What to do about tibial misalignment?
« Reply #12 on: June 10, 2019, 12:01:25 AM »

Hi again guys, thank you for all the input.

Now regarding Stryde and Precice2. FYI, this surgeon performs both of these as well. So if anyone thinks that the Nuvasive "quality" stamp somehow eliminates surgeons that make this type of elementary mistakes are sorely mistaken. Also, I have an internal nail, so I cannot see any reason why the situation would be any better had I chosen Stryde or Precice2. The problem is not the type of nail that is used, but the fact that there is not enough bone in the tibia above the cut to keep it in alignment with the nail itself. I do not see why using Stryde would eliminate this problem. But I may be wrong.

I am seeing at least one more doctor this week. But I do not expect him to state anything but the obvious. The doctor who performed this surgery did not apply enough force and/or used an inappropriate instrument (maybe a chisel that was unsharpened). Again, the doctor complimented me on my strong bones before surgery. Furthermore, due to my diet and exercise program, I have always known that I have a strong skeleton, period. I always thought this would be an advantage for LL surgery, but obviously not with this doctor.

I have never heard of procurvatum. But just to be clear, if I want to stand up without falling backward, I will have to keep my legs as the person to the right in the pic below, because I cannot fully extend my knee. I stopped lengthening a few days ago after a 2 month lengthening phase. Soon, I will remove the external frame and the internal nail will be locked. I am thinking that this might be a good time to somehow lock the internal nail in a way that aligns both tibias?

https://imgur.com/a/fm2iDK9

Please keep the comments coming.
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notatroll

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Re: How fked am I? What to do about tibial misalignment?
« Reply #13 on: June 10, 2019, 12:11:33 AM »

Hi again guys, thank you for all the input.

Now regarding Stryde and Precice2. FYI, this surgeon performs both of these as well. So if anyone thinks that the Nuvasive "quality" stamp somehow eliminates surgeons that make this type of elementary mistakes are sorely mistaken. Also, I have an internal nail, so I cannot see any reason why the situation would be any better had I chosen Stryde or Precice2. The problem is not the type of nail that is used, but the fact that there is not enough bone in the tibia above the cut to keep it in alignment with the nail itself. I do not see why using Stryde would eliminate this problem. But I may be wrong.

I am seeing at least one more doctor this week. But I do not expect him to state anything but the obvious. The doctor who performed this surgery did not apply enough force and/or used an inappropriate instrument (maybe a chisel that was unsharpened). Again, the doctor complimented me on my strong bones before surgery. Furthermore, due to my diet and exercise program, I have always known that I have a strong skeleton, period. I always thought this would be an advantage for LL surgery, but obviously not with this doctor.

I have never heard of procurvatum. But just to be clear, if I want to stand up without falling backward, I will have to keep my legs as the person to the right in the pic below, because I cannot fully extend my knee. I stopped lengthening a few days ago after a 2 month lengthening phase. Soon, I will remove the external frame and the internal nail will be locked. I am thinking that this might be a good time to somehow lock the internal nail in a way that aligns both tibias?

https://imgur.com/a/fm2iDK9

Please keep the comments coming.

What you have in that picture (person in the right) is a tale-telling sign of procurvatum. Sometimes people can't fully extend their legs because of their muscles being shortened due to lengthening. That's why stretching is recommended. However, when you have procurvatum, it's the bone that hinders you from putting your legs straight and walking. People who say this problem could have been avoided by using internals are mistaken. Cooper and other Monegal tibia patients suffered from procurvatum with the Fitbone nail. The surgeon didn't use a good technique. The surgery for correcting that misalignment isn't easy, no matter what the doctor says. Read Cooper's diary to know more.
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cobalt

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Re: How fked am I? What to do about tibial misalignment?
« Reply #14 on: June 10, 2019, 12:24:54 AM »

Nuvasive wants to make sure the doctors that want to perform Precice and Stryde procedures do it correctly. You should not confuse that with greenlighting for other methods performed by these doctors. Surgeon skill does matter and their experience in handling complications that come up.
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sylar94

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Re: How fked am I? What to do about tibial misalignment?
« Reply #15 on: June 10, 2019, 01:21:40 AM »

I dont know which is the biggest red flag: the fact that the doctor fked his leg or the fact that the doctor said everything is ok
can you please tell us the doctor or country?
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TemakiSushi

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Re: How fked am I? What to do about tibial misalignment?
« Reply #16 on: June 10, 2019, 01:37:10 PM »

Nuvasive wants to make sure the doctors that want to perform Precice and Stryde procedures do it correctly. You should not confuse that with greenlighting for other methods performed by these doctors. Surgeon skill does matter and their experience in handling complications that come up.

Oh no no no no
I know the worst doctor in the world performed precice surgery with Nuvasive techs and ended up bending bone...
Even with Stryde we must choose top notch doctors, otherwise those bad doctors will give us horrible results
Don’t go to inexperienced doctors
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TemakiSushi

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Re: How fked am I? What to do about tibial misalignment?
« Reply #17 on: June 10, 2019, 01:43:21 PM »

Hi guys,

I had surgery only 2 months ago. I chose tibial lengthening with the LON method. I only wanted 5cm, so it seemed to be a fairly safe option with the internal nail supposedly preventing misalignment. I have just finished lengthening around 5 cm and had my tibias x-rayed (see below). Anyway, as you can see in the x-rays the cut of the left tibia was very poor and left me with very little posterior bone above the cut. On the right tibia, the cut was a little bit better but left me with a posterior fracture where the yellow arrow is. As a consequence, it seems that there is not enough strong posterior bone on either leg to guide the upper part of the tibia along the nail. I suppose, due to the tightness of muscles, ligaments, and lack of bone to force the tibia above the cut to stay in alignment with the nail, it has become misaligned with the tibia below the cut by about 10 degrees on both legs (the angle should be about 90 degrees, I assume). As a side-note, the misalignment is also clearly visible from the outside as big hard bumps in the skin (no pics, sorry). Also, the knees are sore all the time, especially the left knee. I think this has to do with how the external fixators were positioned on my legs. It is as if the angle between where the fixator is attached to my ankle and where it is attached to my knee is wrong. Especially on the left leg, it seems as if it hinders me to fully extend the leg.

x-rays:

https://imgur.com/sP3Rl3S
https://imgur.com/bS4g1C0

I don't understand how this could happen. The doctor told me before surgery, that I have very good and strong bones, so it must be that he did not apply enough force to break the tibias cleanly. Also, I think he cut the bone too high. What is the point of having an internal nail to avoid misalignment, when there is not enough bone around the nail to force the tibia in alignment? Of all the complications, I contemplated before surgery, this never ever crossed my mind, and I cannot seem to find something similar on this forum. I will not write the doctors name here at this point, because I am dependent on his care, and I am not sure he approves. I hope you understand.

Unbelievably, the doctor has told me that I do not need to worry, as the new bone will magically correct the align by itself. But I am not sure what he means by that. Sure new bone will connect the parts somehow. But I highly doubt that it can bring down the angle from 10 to 0 degrees because it seems that this would require some serious force to overcome the opposing forces that facilitated the misalignment in the first place. I am deeply worried that if this will heal with the 10-degree misalignment, as I cannot stand straight. After consulting with an orthopedist that is not a LL specialist, he expressed the same concern and said if the misalignment is not reversed, I will not be able to extend my lower leg fully and will, therefore, have a permanent slight bend in my knees. Also, I suppose, having a misalignment will lead to stress on joints and back because of improper load bearing?

Has anyone had a similar problem? What can be done to resolve this? How much time do I have to fix this before it consolidates with misalignment? I would really appreciate if the community would give me some solid advice that I can bring up when I talk to the doctor next week.
It seems that your doctor don’t know what he’s doing
Forget about this doctor and go see highly experienced doctors
If your doctor were competent, he wouldn’t have made such a bad mistake and never say such stupid things
It’s very obvious he cannot do anything now
You’ll probably need to change your frame to TSF to fix alignments
Some people think it’s easy to handle TSF because it’s computerized adjusting
But in fact with any kind of frames, doctors abilities and philosophy is very important to bring good outcomes
I would never trust your doctor
He can even worsen the complications you already have
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suddenurge

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Re: How fked am I? What to do about tibial misalignment?
« Reply #18 on: June 10, 2019, 01:50:56 PM »

Hi again guys,

Let me just say that I perfectly understand why so many sent me PM:s asking for the name of the doctor. However, I strongly feel that I should give the doctor a chance to change his mind first and come up with a solution. Even though it is hard to admit it, what is done is done, and all that matters now is how he deals with it. But, let me at least assure you that he is not one of the more common doctors that you so often read about in patient diaries. I am really thankful to the other doctor that I met last week who raised the alarm whilst it is still time to do something about it, without him, I would most likely never found out until the misalignment was a permanent disability.

I have another question for the forum. Let us say that he refuses to deal with it. What European doctor would you recommend to fix this?

 
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suddenurge

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Re: How fked am I? What to do about tibial misalignment?
« Reply #19 on: June 10, 2019, 02:27:01 PM »

Nuvasive wants to make sure the doctors that want to perform Precice and Stryde procedures do it correctly. You should not confuse that with greenlighting for other methods performed by these doctors. Surgeon skill does matter and their experience in handling complications that come up.

But my point is that the break of the bone is exactly the same procedure whether or not you are using LON or Stryde. It is the most basic and fundamental step which all lengthening processes with internal nails rest upon. So it is really not the question of being an expert in one method but not the other.
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PANDA:BEAR..

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Re: How fked am I? What to do about tibial misalignment?
« Reply #20 on: June 10, 2019, 04:04:01 PM »

Hi again guys,

Let me just say that I perfectly understand why so many sent me PM:s asking for the name of the doctor. However, I strongly feel that I should give the doctor a chance to change his mind first and come up with a solution. Even though it is hard to admit it, what is done is done, and all that matters now is how he deals with it. But, let me at least assure you that he is not one of the more common doctors that you so often read about in patient diaries. I am really thankful to the other doctor that I met last week who raised the alarm whilst it is still time to do something about it, without him, I would most likely never found out until the misalignment was a permanent disability.

I have another question for the forum. Let us say that he refuses to deal with it. What European doctor would you recommend to fix this?

If you have the funds and would like to fix this problem.. then I advise you to see Dr paley... he's the one who can deal with this .. there are other doctors in USA..... which will help ..
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Great321

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Re: How fked am I? What to do about tibial misalignment?
« Reply #21 on: June 10, 2019, 05:20:07 PM »

I would suggest you to write to several doctors in hope for a fast response from someone. Send them your latest X-rays and explain how urgent it  is (write URGENT in the subject of your mail) and ask if and how they could help you. Then you can still decide which reply sounds the best. .

Some european doctors that come to my mind are Dr. Baumgart (Experienced but expensive, Germany), Dr. Pili/Catagni (Italy), Dr. Giotikas (Greece)

A couple of hours from where I live there is a hospital that is also very experienced in limb lengthening/correcting with external fixators: (Pretty sure they also speak English)
Klinik für Unfallchirurgie
Medizinische Hochschule Hannover
Tel.: +49 511 532-2099
info@mhh-unfallchirurgie.de

OR

those doctors in Britain who help unicorn currently


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Apoplectic

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Re: How fked am I? What to do about tibial misalignment?
« Reply #22 on: June 10, 2019, 05:37:28 PM »

Dr giotikas seems like a good bet since he used to be a military doctor that specialised in correcting issues with limbs arising from combat so this seems like something that he'll have some experience in dealing with.
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cobalt

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Re: How fked am I? What to do about tibial misalignment?
« Reply #23 on: June 10, 2019, 06:14:23 PM »

Guichet was considered a top surgeon by many on here until Unicorn's case where he severely mishandled it when complications arose. Some "top" surgeon can make mistakes in operating room, the most important thing afterwards is how they respond. There is even a video of Guichet doing a "karate chop" on patients' legs. Some surgeons employ unconventional methods to break bones, very risky to pt.

The point is some tools and nails are developed to mitigate the risks(points of cuts and insertion designated, not just randomly decided by the dr) cause less trauma to patients and less pain(subjective) which Precice and Stryde does. There is no comparison. In the end, a tool is just a tool, it lies with the person using it. The makers have done their job.

A person has to do their due diligence to choose the right doctor for themselves. It is wise to choose the surgeons who have seen it all. You have to look into their cases, their knowledge, and what they specialize in such as deformity cases. Those who are not advertising CLL but are dedicated to reconstructing deformed limbs. I hope your situation improves but do not defend monorail and your choice, it is a bad one. No one else should make this mistake.


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suddenurge

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Re: How fked am I? What to do about tibial misalignment?
« Reply #24 on: June 11, 2019, 01:25:16 PM »

Thanks for the suggestions. I have contacted many of the doctors suggested in this thread. Hoping to hear from them soon. Meanwhile, I am very disappointed about how this could have happened and kept in the dark.

I would still be grateful if anyone could give me an idea on how time sensitive this surgical correction is?

Do you think that TSF frames would be the only option? I would have to wear them for the whole consolidation period, right?
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Great321

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Re: How fked am I? What to do about tibial misalignment?
« Reply #25 on: June 11, 2019, 01:37:28 PM »

Thanks for the suggestions. I have contacted many of the doctors suggested in this thread. Hoping to hear from them soon. Meanwhile, I am very disappointed about how this could have happened and kept in the dark.

I would still be grateful if anyone could give me an idea on how time sensitive this surgical correction is?

Do you think that TSF frames would be the only option? I would have to wear them for the whole consolidation period, right?

TSF frames can be replaced with a nail as soon as you're misalignment is corrected I guess. Because I have TSF frames on and if I wanted to I could have replaced them.
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suddenurge

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Re: How fked am I? What to do about tibial misalignment?
« Reply #26 on: June 11, 2019, 02:36:11 PM »

Thanks for the reply. I already have a nail, albeit not an expanding one. But since the lengthening is finished this would not matter. Is it not possible that when removing the external fixator, one could reduce the misalignment and then fixate the new alignment by locking the nail in the new position using screws?
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Great321

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Re: How fked am I? What to do about tibial misalignment?
« Reply #27 on: June 11, 2019, 03:24:15 PM »

Sorry I have no idea about the medical possibilities. Maybe someone else though. Please let us know if you find a solution with a doctor.
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sylar94

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Re: How fked am I? What to do about tibial misalignment?
« Reply #28 on: June 11, 2019, 03:28:00 PM »

suddenurge why did you notice this problem only after lengthening the 5 cm?
i think you are a good example of why everyone should start a diary so that other people can notice something like this
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doomsday

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Re: How fked am I? What to do about tibial misalignment?
« Reply #29 on: June 11, 2019, 06:45:14 PM »

Non of the people sitting here will be able to tell you whats going on. It seems bad but not too bad. Definitely you need to get a second opinion from a different doc.
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Jim_dabarber

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Re: How fked am I? What to do about tibial misalignment?
« Reply #30 on: June 12, 2019, 12:20:18 AM »

That alignment is really bad man. Correction needs to be done asap before the bone starts to bridge. If that were to happen then a surgery to rebreak the bone would have to be made. Your misalignment started from day 1 of nail insertion. Your doctor should have kept the alignment in better position. Only thing to do now is instal an external frame that allows you to manipulate the degrees and angles of the bone in order to re-align them together. The nail would have to be taken out first because at this point it will be in the way and you risk the chance of fracturing the bone from unwanted pressure elsewhere. Corrections would then be able to be done but only slightly each day. Doing corrections too fast you risk the chance of nerve damage. Once corrections are done and the bone is perfectly aligned then a nail can be re inserted and locked and external frames taken off. Good luck man. Any doctor in the US should be able to help you, Dr Giotikas has done a good job on a female patient on this forum and of course Dr Kulesh and Dr Solomin my doctors in Russia will be more than happy to help you. Please get help asap.
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165 cm pre LL / 174 cm after undergoing 4cm on tibias and 5cm on femurs, Cross-Lengthening with Dr. Kulesh and Dr. Solomin / http://www.limblengtheningforum.com/index.php?topic=5016.0
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