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Author Topic: My diary of quadrilateral Precice2 LL with Dr. Gokhan  (Read 9204 times)

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li2028

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Re: My diary of quadrilateral Precice2 LL with Dr. Gokhan
« Reply #93 on: March 18, 2024, 05:26:34 AM »

Hi Ted68,

Thanks for your sharing your experience.

Hope you feel better soon! Hope you can walk normally in a couple of months!
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Ted68

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Re: My diary of quadrilateral Precice2 LL with Dr. Gokhan
« Reply #94 on: March 18, 2024, 06:12:10 AM »

Hi Ted68,

Thanks for your sharing your experience.

Hope you feel better soon! Hope you can walk normally in a couple of months!

Thank you, too !
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Ted68

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Re: My diary of quadrilateral Precice2 LL with Dr. Gokhan
« Reply #95 on: March 18, 2024, 10:06:34 AM »

Day 82-87

Few days ago Batu, the Remedy guy, asked me to be ready to go to a visa bureau, so they can get my fingerprints. I said “Why ? … Am I a suspect for something ?”. He said “No, but they changed the rules and they ask that for all people are staying in Turkey more than 90 days”. Usually it’s a simple online form to complete, but now they are more strict.
Ok, I was happy to leave my room, so I can see new people and places. He came with a special car for handicapped people and lifted my wheelchair with a small platform. Amazing ! 
We arrived to a big and well secured building and we waited 20 minutes in the street. Fortunately, it was a nice day. But we found is not the right place, so we had to leave and go to a different place.
We arrived there, moved me down again and we got in a crappy place, very busy, full of all kind of people from every corner of the world, looking to resolve their visa problems. Here I had to wait in the wheelchair more than an hour, which was way too much for me, because I cannot stay long, so I got pain in my legs. Finally they invited me in a room where they took my fingerprints with a device having a sensor plate. After finishing and get in the car I asked Batu to let me stay on the bench, so I can straighten and exercise my legs. Staying more than 15 minutes in wheelchair give me pain because I compress my vessels and nerves… but actually I stayed more than an hour, so just imagine how I did feel !
As expected, when I arrived to the hotel I noticed my feet were swollen and had a deep pain !

I went for the X-rays, which are scheduled every 2 weeks, and all things are pretty much same as previous x-rays, including the right femur curvature... which was my biggest concern.

Anyways, in 3 days it will be 3 months since I have been in Turkey.

I have 8 days left to the end of elongation period. 11mm left to do, so 5.5mm for each segment.

After finishing I will go for the last X-rays… then I have to do an intensive PT so I can touch with both heels the pool floor, otherwise I cannot do EOS to measure precisely my bones. The EOS should be done in vertical position, with heels down and straight legs, that means with the knees not bent at all !
The problem is that now I feel I have “ballerina foot” because I walk on tiptoes, on both. But the PT guys told me my ankles and Achilles tendons are still flexible, so is not a real ballerina foot, which is actually a deformity and hard to fix it.
Also my knees are slightly bent, but not bad.

On my right tibia, on proximal anterior, I have 2 bumps from the upper screws, which are very painful when I put the ERC on them to elongate. So, to dim the pain I must place on the bumps a folded socket or something, so I can do elongation…

The general pain in the right tibia is much more than left tibia, so I cannot do PT normally. Also I cannot sleep well because the straighten position pain.

The both tibias are internal curved, like bow legs, but the left tibia is more curved than the right one, so I cannot touch my ankles. Doctor told me it will both straighten in the lengthening process… so I am still waiting for that...

I have many scars, but especially few long and red scars, which looks bad. They gave me a special cream, so I hope at least it will change the color to the skin color...

3 months of suffering, pain, sleepless and other bad effects. So, I still have to stay one month and I hope all these will go away and I can get back to my previous shape… and I can get rid of my main medication, because I took too many pills !  I will take only with my supplements which help the callus formation and the healing process...

Overall, I feel myself like a wreck. My legs are very weak, so I cannot even walk in the swimming pool, because my right tibia pain. I am scared about this long delay in walking and regarding the delay in recovering my walking.
I am pretty sure I will go back in my country in wheelchair, because not enough time for the final period of PT...
« Last Edit: March 18, 2024, 12:52:28 PM by Ted68 »
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GoodJuju

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Re: My diary of quadrilateral Precice2 LL with Dr. Gokhan
« Reply #96 on: March 20, 2024, 12:43:00 PM »

You’ll get there brother. Nothing great comes easy. Sending you good vibes. Seperately, may i ask what drugs you’re on for pain management ?
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Ted68

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Re: My diary of quadrilateral Precice2 LL with Dr. Gokhan
« Reply #97 on: March 20, 2024, 01:19:34 PM »

You’ll get there brother. Nothing great comes easy. Sending you good vibes. Seperately, may i ask what drugs you’re on for pain management ?

Hey, Juju... and thank you for your good vibes !

Well, everybody knows is not easy, obviously... but for me is more important to get a great result finally, not to leave this place being worse than the moment I came here. So thats why I am stressed about...

Regarding pain, I am not sure if you have read what I wrote along of these 3 months, but I had to stop the normal pain killing scheme of narcotics (3 opioids) after the first week, because the very strong side effects of them which ruined me completely... so, I had to switch to a much lighter scheme, based on Paracetamol and Voltaren.
Thats why I have much more pain than the majority of patients, because they could take a strong pill or skin patch, whenever they need, and me...not.
For me was impossible to live with opioids, so for almost entire period I had to take soft painkillers and to accept more pain.


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GoodJuju

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Re: My diary of quadrilateral Precice2 LL with Dr. Gokhan
« Reply #98 on: March 21, 2024, 06:35:01 AM »

Hey, Juju... and thank you for your good vibes !

Well, everybody knows is not easy, obviously... but for me is more important to get a great result finally, not to leave this place being worse than the moment I came here. So thats why I am stressed about...

Regarding pain, I am not sure if you have read what I wrote along of these 3 months, but I had to stop the normal pain killing scheme of narcotics (3 opioids) after the first week, because the very strong side effects of them which ruined me completely... so, I had to switch to a much lighter scheme, based on Paracetamol and Voltaren.
Thats why I have much more pain than the majority of patients, because they could take a strong pill or skin patch, whenever they need, and me...not.
For me was impossible to live with opioids, so for almost entire period I had to take soft painkillers and to accept more pain.


Oh yes I recall that. Thanks for sharing
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Ted68

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Re: My diary of quadrilateral Precice2 LL with Dr. Gokhan
« Reply #99 on: March 25, 2024, 07:29:48 AM »

Day 88-94

Tomorrow is a big day for me, because I finish the elongation !... I gained a total of 121mm: 77.7 mm on femur plus 43.4 mm on tibia. So that means 182 cm height.
The last week was bad, each more millimeter I could feel it. The tissues stretch is hard to get for the body and I couldn’t sleep. I am happy that I decreased from 2 mm/day to 1.4 mm/day… otherwise i couldn’t do it !
The both feet are still flexible on tendons, but I walk only on tiptoes and having big pain in tibial bones.
In 2-3 days I will get the last regular x-rays. I hope the right femur curvature is stable !
After finishing elongation the pain should decrease and callus formation will increase…
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Ted68

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Re: My diary of quadrilateral Precice2 LL with Dr. Gokhan
« Reply #100 on: March 29, 2024, 03:47:50 PM »

Day 95-98

After finishing elongation I had 3 days of no elongation, but the happiness is not forever, because i have done the x-rays and 2 days later doctor gave me a bad news that my right tibia has late and slow callus formation… so I have to do reversing cycles so it could start the normal process…
The left tibia is a bit better but not great, so he advised me to do it on both.

Ohh, great !... so now I have to start over the schedules for the lengthening machine, for 3 weeks…

The PT is painful for me every day, as I told you already.

As you can see, I am busy permanently, never relaxed so I could sleep well…
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Bob

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Re: My diary of quadrilateral Precice2 LL with Dr. Gokhan
« Reply #101 on: March 29, 2024, 09:09:25 PM »

Good your doctor saw it. It's not an easy process, but you are doing alright. Three week is not so long in the whole picture - you'll soon finish the elongation. Good luck.
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Ted68

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Re: My diary of quadrilateral Precice2 LL with Dr. Gokhan
« Reply #102 on: March 29, 2024, 09:24:15 PM »

Good your doctor saw it. It's not an easy process, but you are doing alright. Three week is not so long in the whole picture - you'll soon finish the elongation. Good luck.

Actually I noticed that few weeks ago, same as I noticed and told them anything happened bad to me so far... hoping they will fixed it !
I told them and they said: "Its ok, as long the femurs got a good callus, the tibia will come after.".... but it didn't !.... The callus on femurs is really good !
Anyways, thank you for your wishes !
« Last Edit: March 29, 2024, 09:54:57 PM by Ted68 »
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Bob

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Re: My diary of quadrilateral Precice2 LL with Dr. Gokhan
« Reply #103 on: March 29, 2024, 09:27:27 PM »

Good you saw it.
Is your plan to show the x rays?
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Ted68

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Re: My diary of quadrilateral Precice2 LL with Dr. Gokhan
« Reply #104 on: March 29, 2024, 09:48:37 PM »

Good you saw it.
Is your plan to show the x rays?

I show only when somebody ask me... of course.

https://photos.app.goo.gl/qpCj5CDaKgRvWyX58

https://photos.app.goo.gl/xHgnZ7YGRbFMcRNCA
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Bob

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Re: My diary of quadrilateral Precice2 LL with Dr. Gokhan
« Reply #105 on: March 29, 2024, 10:05:10 PM »

Correct me if I'm wrong, but imo many doctor's and others will say that your callus formation is okay. But of course you and your doctor knows best. Anyway you'll be fine. Hope you'll be happy with your new height.
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Ted68

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Re: My diary of quadrilateral Precice2 LL with Dr. Gokhan
« Reply #106 on: March 29, 2024, 11:09:29 PM »

Correct me if I'm wrong, but imo many doctor's and others will say that your callus formation is okay. But of course you and your doctor knows best. Anyway you'll be fine. Hope you'll be happy with your new height.

Yeah, I wish, but what you see on right tibia and fibula are not callus... are splinters remained from osteotomy... They said they analyzed it well, with high contrast, etc
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GoodJuju

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Re: My diary of quadrilateral Precice2 LL with Dr. Gokhan
« Reply #107 on: March 30, 2024, 11:11:03 AM »

Oh that’s a shame but hopefully sorts itself out asap. So will you shorten both left and right tibia at 1mm per day for 3 weeks (ie 21mm shortening in total) then re start the lengthening of them?

Day 95-98

After finishing elongation I had 3 days of no elongation, but the happiness is not forever, because i have done the x-rays and 2 days later doctor gave me a bad news that my right tibia has late and slow callus formation… so I have to do reversing cycles so it could start the normal process…
The left tibia is a bit better but not great, so he advised me to do it on both.

Ohh, great !... so now I have to start over the schedules for the lengthening machine, for 3 weeks…

The PT is painful for me every day, as I told you already.

As you can see, I am busy permanently, never relaxed so I could sleep well…

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GoodJuju

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Re: My diary of quadrilateral Precice2 LL with Dr. Gokhan
« Reply #108 on: March 30, 2024, 11:12:42 AM »

Day 95-98

After finishing elongation I had 3 days of no elongation, but the happiness is not forever, because i have done the x-rays and 2 days later doctor gave me a bad news that my right tibia has late and slow callus formation… so I have to do reversing cycles so it could start the normal process…
The left tibia is a bit better but not great, so he advised me to do it on both.

Ohh, great !... so now I have to start over the schedules for the lengthening machine, for 3 weeks…

The PT is painful for me every day, as I told you already.

As you can see, I am busy permanently, never relaxed so I could sleep well…


Also - were your knees very tight at the end of your lengthening and could you straighten your legs/knees fully or did you have a slight bend at the end of lengthening?
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Ted68

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Re: My diary of quadrilateral Precice2 LL with Dr. Gokhan
« Reply #109 on: March 30, 2024, 01:52:26 PM »

Hi, Juju... Thank you for your concerns.

I have to do 2 cycles of reversing/regaining, which takes 20 days total. 5 days reversing 1mm/day, then 5 days regaining. Two times...
So, I am not shortening 21mm, I will do maximum 5mm, otherwise will be to much stress for my soft tissues !

Yes, man, in the last month I never could straighten normally my knees, only forcing them !
Same with the feet, where I cannot touch the floor with the heels.
Fortunately my muscles and tendons are still flexible, so not a big problem for future, since I already finished my general lengthening.
My main problem now is that because of 2 effects, I cannot go to do EOS for final adjustments.
But, anyways, I cannot do that before reversing, because the main doctor's problem is the missing callus on tibias...

Hopefully I can improve something in these 3 weeks, so I can do EOS, which is very important for me to know exactly the length of each bone !

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GoodJuju

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Re: My diary of quadrilateral Precice2 LL with Dr. Gokhan
« Reply #110 on: March 31, 2024, 01:12:35 AM »

Oh wow so that’s interesting - so by going down by 5mm then up by 5mm, then again going down 5mm then up again 5mm (sort of a yoyo effect) this is the best to encourage bone generation?

Did you have an EOS prior to surgery as well- if so why the need for anotherEOS  as wouldn’t you already know the discrepancy between the bones?
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Ted68

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Re: My diary of quadrilateral Precice2 LL with Dr. Gokhan
« Reply #111 on: March 31, 2024, 08:18:45 AM »

Oh wow so that’s interesting - so by going down by 5mm then up by 5mm, then again going down 5mm then up again 5mm (sort of a yoyo effect) this is the best to encourage bone generation?

Did you have an EOS prior to surgery as well- if so why the need for anotherEOS  as wouldn’t you already know the discrepancy between the bones?

Yes, Juju, its and interesting biochemical and electrical "phenomenon" which should trigger the osteosynthesis. I hope will happen, so I will not do all these for nothing...

No, I never did EOS before. Its an expensive radio-imaging 3D system. They do it only after finishing the elongation period, so they can measure accurate the bones.
So far the doctors measured my bones approximately, but I need to know exactly, so I don't go home with discrepancies !
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Ted68

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Re: My diary of quadrilateral Precice2 LL with Dr. Gokhan
« Reply #112 on: March 31, 2024, 08:31:18 AM »

Day 99-100

Here the weather is sunny and too hot for my room, because is facing South, so these days I turned on the AC.

There are 2 PT guys who are coming to help me and I named them “the bad boy” and “the good boy”.
The bad boy is forcing my muscles and tendons to work and also he push me to go to the pool. This is great and I need to be forced and pushed, so I can regain my motor function. But these are coming with big pain after, for 24 hours...
The good boy is doing all these softer and gentle, plus he is still doing electro-therapy, so overall is like a massage therapy after 24 hours of pain, which I really need.
So, they are both great and I like these cycles of pain and relief !

Yesterday came the “bad boy” and “killed” me like usually…so for the rest of my day and especially night time I had bad pain in my bones and knees… and because of that I couldn’t sleep for hours… Finally i not even heard the waking alarm at 8 AM today … and I slept to 10: 30 !... And I lost the breakfast too, because they close at 10…
Crazy !

I keep doing reversing, so after 5 days the soft tissues will be 5mm shorter and the PT guys should feel that in my ankles, which should be more elastic and mobile.

Last night I dreamed that I was walking normally !.... In the dream I knew I did LL and I was happy and surprised I can finally walk like before, with no pain !
And I almost cried for joy I could walk...
Well, only guys who have done quad LL can understand that...
For the moment I am not even do a simple step, I just lived 3 month and a half in wheelchair and I have to keep doing it maybe for 2-3 more months more...
« Last Edit: March 31, 2024, 10:15:42 AM by Ted68 »
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GoodJuju

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Re: My diary of quadrilateral Precice2 LL with Dr. Gokhan
« Reply #113 on: March 31, 2024, 11:38:01 PM »

Yes, Juju, its and interesting biochemical and electrical "phenomenon" which should trigger the osteosynthesis. I hope will happen, so I will not do all these for nothing...

No, I never did EOS before. Its an expensive radio-imaging 3D system. They do it only after finishing the elongation period, so they can measure accurate the bones.
So far the doctors measured my bones approximately, but I need to know exactly, so I don't go home with discrepancies !


Interesting. Thanks for sharing. However if you can only do the EOS once you’re fully weight bearing - would that not mean only once your bone has healed (consolidated) - meaning even if you see a length difference in the EOS it’ll be too late to adjust it since your bones will have consolidation?
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Ted68

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Re: My diary of quadrilateral Precice2 LL with Dr. Gokhan
« Reply #114 on: April 01, 2024, 08:51:57 AM »


Interesting. Thanks for sharing. However if you can only do the EOS once you’re fully weight bearing - would that not mean only once your bone has healed (consolidated) - meaning even if you see a length difference in the EOS it’ll be too late to adjust it since your bones will have consolidation?

You're welcome, Juju.

EOS I have to do it before consolidation, just to measure accurately my bones so I can do the final adjustments, before leaving Turkey. Doing EOS after consolidation is useless for me...
For EOS I must stay vertically but for Precice is not allowed and for me is not possible so far.
But, I heard there are some handles on that machine, so I can hold my body vertically not to force down on my implants.
I will see...
« Last Edit: April 01, 2024, 09:48:54 AM by Ted68 »
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GoodJuju

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Re: My diary of quadrilateral Precice2 LL with Dr. Gokhan
« Reply #115 on: April 01, 2024, 01:16:11 PM »

Ah yeah if you can use the handles and semi weight bare that makes sense as for EOS you need to stand up. Good luck!
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Ted68

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Re: My diary of quadrilateral Precice2 LL with Dr. Gokhan
« Reply #116 on: April 09, 2024, 11:15:32 AM »

Ah yeah if you can use the handles and semi weight bare that makes sense as for EOS you need to stand up. Good luck!

Yeah, but my main problem is with the feet, because I cannot touch the ground with the heels...
I am trying to put something, like a two-by-four piece of wood, so I can have at least the heels equals.
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GoodJuju

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Re: My diary of quadrilateral Precice2 LL with Dr. Gokhan
« Reply #117 on: April 12, 2024, 12:03:19 PM »

How’s the recovery going so far doing the -5mm then + 5mm ? Ha your tightness and pain fully subsided or is it still high?


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Ted68

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Re: My diary of quadrilateral Precice2 LL with Dr. Gokhan
« Reply #118 on: April 12, 2024, 02:14:03 PM »

How’s the recovery going so far doing the -5mm then + 5mm ? Ha your tightness and pain fully subsided or is it still high?

In few days I am doing a new x-ray so we can check if all these cycles helped.
I still have pain when I straighten the legs and I felt a slight decreased of pain when reversed.
in 6 days I will finish these cycles, because are another stress for me.
Overall my pain is less and I can sleep finally in all body positions, without waking up suddenly...
My main concern now is the EOS, because I must find a way to do it properly. It should be done tomorrow, being the best moment because the reversing is in the lowest point... but is Saturday and then Sunday, so nobody work. That means I will do it later when I regain my 5 mm lost.
Too bad !

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GoodJuju

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Re: My diary of quadrilateral Precice2 LL with Dr. Gokhan
« Reply #119 on: April 14, 2024, 04:01:19 AM »

Ok good luck with it and let us know :).

Btw - did your doc recommend standing at all (even while still lengthening) to help encourage bone growth? I have heard of several doctors saying standing (weight bearing) even before the bone is healed is a good way to speed up bone growth (even with precise 2.2).
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Ted68

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Re: My diary of quadrilateral Precice2 LL with Dr. Gokhan
« Reply #120 on: April 14, 2024, 07:24:06 AM »

Ok good luck with it and let us know :).

Btw - did your doc recommend standing at all (even while still lengthening) to help encourage bone growth? I have heard of several doctors saying standing (weight bearing) even before the bone is healed is a good way to speed up bone growth (even with precise 2.2).

Thank you, Juju...

Standing up on Precice is allowed only in the first 5 days after the FIRST surgery, when the nails are strongest (because they wasn't elongated yet) but after that it is completely forbidden to stand-up.
And I didn't, especially because of my femur sensitive nails.
That advice to do it no matter what is for Ilizarov, LON, Betzbone/Gnail and Stride/Max.

And, yes, because of that, the callus formation could start later than others, especially on tibias. That happened to me.

So, totally I will stay in wheelchair 6-7 months, 4 and a half here and 2-3 months home, till the strong  callus formation.
The guys with 12mm nails diameters are more lucky, they can stand up a month earlier, due to the strengthen of nails.
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Ted68

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Re: My diary of quadrilateral Precice2 LL with Dr. Gokhan
« Reply #121 on: April 14, 2024, 05:04:14 PM »

Day 101-114

The general pain decreased, including the lengthening pain, which used to woke me up every 5 minutes in midnight. I still have big pain when I straighten my legs, but when I sleep usually I keep them in semi-flexion, so I can sleep with no breaks…

As you know my callus is not great developed in my tibias, so i had to reverse my length in 2 cycles. Now i have 4 more days and done.

In these 4 months only one time i found the pool water really warm, as +28C, and that day i felt amazing good, no muscle contraction and i could walk wit no pain... but the rest of days water was 20-22, so too cold for me.
That means the pool in this hotel was useless for me.

Also, the gym has no Alter-G walking machine and not even rehab paralels... so, again, a ussless gym for me.
These 2 lacks wasted my time of recovering with many weeks.

Four days ago I got another problem, a tendon jumped, on medial side of my knee, from Semi-Membranos or Semi-Tendinos muscle, and I got so much pain that I had to stop the PT. I had pain even in night time on that tendon. Next day at PT it was even worse. In every movements I felt that painful jump, so I had to stop 80% of my exercises for few days. Now I am very careful, to not forced the left knee movement too much anymore.

And, because nothing went smooth in my lengthening process, now i got a new problem !... One of a proximal  tibial screw bumped up a lot and yesterday scared me.
This bumping screw started about 2 weeks ago, slowly day by day... till it came up 1 cm !
That is bad and i am pretty sure i need another surgery, to screw it back in the bone... Crazy !
I have less than 2 weeks to stay in Turkey and i dont know yet what is my real length of my bones and i got this bump on top of these...
I sent a message to doctor, with pictures, and tomorrow I will go to X-rays to what is going on actually.
You have here the pictures…

https://photos.app.goo.gl/yCQ3vd8SXYxNU7Ln7

https://photos.app.goo.gl/HFe8JKBfS4DHJA9D8

https://photos.app.goo.gl/14X5No57yVSR3iAH7
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Bob

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Re: My diary of quadrilateral Precice2 LL with Dr. Gokhan
« Reply #122 on: April 15, 2024, 09:25:40 AM »

Any news about the x rays?
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Ted68

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Re: My diary of quadrilateral Precice2 LL with Dr. Gokhan
« Reply #123 on: April 15, 2024, 12:42:08 PM »

Any news about the x rays?

Yes, I just came back from X-rays, so here you can see the comparing between the screw 2 weeks ago... and now:

https://photos.app.goo.gl/k3CyxMSx1LXt2KL79

https://photos.app.goo.gl/xg3HBCcpu14mRNjC9
So, as you can see, the screw's thread is completely outside the bone.

And here you see how much is bumped-up on my leg:

https://photos.app.goo.gl/D7o6uDSkwCkTBSDr9
« Last Edit: April 15, 2024, 01:50:05 PM by Ted68 »
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