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[myloginacc]

Hello Shadow91

No one is neglecting the seriousness of the non union matter.
If it is the case, stem cells treatment will do the job.

If that was the case, Unicorn's situation would be solved already. That is, there would be an existing treatment for her big non-union.

Take the advice from the vets seriously.

[Rocky]

If that was the case, Unicorn's situation would be solved already. That is, there would be an existing treatment for her big non-union.

Take the advice from the vets seriously.

Hello myloginacc

I don't know who Unicorn is and how she was treated, so I can't comment on her situation.

Stem cells treatment needs to be done at the day the lengthening stops. I am not sure if she had it just after they stopped the device or not, or if she had it at all.

No one so far gave me a qualified answer why they think the callous looks weak. Besides that you can't tell that after 1 month of lengthening, as far I was explained.

[doomsday]

stem cells wont do sh!t  if there is no callous. Stem cells can only speed up calcification. Huge difference.

[Rocky]

stem cells wont do sh!t  if there is no callous. Stem cells can only speed up calcification. Huge difference.

Apart from the word "S...", that is a scientifically qualified answer that I will buy Stem cells needs something to build on. And if there is no callous at all, there are methods such as implanting bone grafts and applying stem cells to provoke the growth.

[myloginacc]

Apart from the word "S...", that is a scientifically qualified answer that I will buy Stem cells needs something to build on. And if there is no callous at all, there are methods such as implanting bone grafts and applying stem cells to provoke the growth.

Yes, but the (nonunion) gap may have become too big for most attempts to work, like in Unicorn's case. That's why you need to be careful.

As Body Builder said, LL is not a time attack. If you went and got yourself in a surgery like this, you need to make sure you come out in the best shape possible.

[Rocky]

Yes, but the (nonunion) gap may have become too big for most attempts to work, like in Unicorn's case. That's why you need to be careful.

As Body Builder said, LL is not a time attack. If you went and got yourself in a surgery like this, you need to make sure you come out in the best shape possible.

Hello myloginacc

Yes that is understandable. I fully agree with you.
Everyone wants to come out of such a treatment in the best shape possible.

I just don't like the tone or lack of communication skills by some members in here. I find it somehow immature.

[Rocky]

Important

Dear members

I would kindly and sincerely ask you to not use any bad words in my diary. My family reads this diary every day, including my 6 years old kid who is learning how to read.

I know that I can't demand or dictate it, but I am asking sincerely and kindly to select your words carefully which is suitable for such a respectable forum and is somehow "family friendly".

Again, I can't force you to do so. Its just a friendly ask from a carrying dad.

Thank you for your understanding and may God protect and bless you all.

[Johnson1111]

Could the slower callous formation be due to his older age than say someone in their late teens or 20s? I know it is a possible occursnce regardless but maybe people in 40s should lengthen slower in comparison?

[myloginacc]

Important

Dear members

I would kindly and sincerely ask you to not use any bad words in my diary. My family reads this diary every day, including my 6 years old kid who is learning how to read.

I know that I can't demand or dictate it, but I am asking sincerely and kindly to select your words carefully which is suitable for such a respectable forum and is somehow "family friendly".

Again, I can't force you to do so. Its just a friendly ask from a carrying dad.

Thank you for your understanding and may God protect and bless you all.

That's understandable. I'll be more mindful too.

Could the slower callous formation be due to his older age than say someone in their late teens or 20s? I know it is a possible occursnce regardless but maybe people in 40s should lengthen slower in comparison?

That's not a question for any of us to answer... We don't have the qualifications. The science on this is pretty mixed.

[Rocky]

That's understandable. I'll be more mindful too.

That's not a question for any of us to answer... We don't have the qualifications. The science on this is pretty mixed.

Thank you myloginacc. May God protect you.

[Rocky]

About Stem Cells Treatment

Dear members

Since we had some discussions around stem cells treatment, I consulted Dr. Jamal during his visit to educate myself and understand how he actually does it.

I thought till today that I knew what it was. But I discovered that I have a lot to learn about the topic.

Let me explain to you for those who might be interested in this topic.

The procedure is as follow:

1) Stem Cells harvesting: When the bone is cut during the surgery, the doctor takes stem cells samples from the bone. The stem cells are not hard bone tissues. Its actually a liquid they suck out in small doses.

2) Stem Cells maintenance: The stem cells are sent to the laboratory where they will be treated, kept in specialized containers and maintained for several months or years.

3) Stem Cells treatment: With the stem cells you can develop any tissue in the body (muscles, nerves, bones, callous, etc.). At the laboratory, they prepare 3 doses from the taken original stem cells:

3a) Osteoclast (bone): This will be injected between bone gaps to create callous.

3b) myoblast (muscles): This will be injected in places where muscles could have been damaged to re-create new muscles.

3c) Neuroblast (nerves): This will be injected in the places where the nerves might have been damaged to re-create new nerves.


3d) Original Stem Cells liquid: And lastly the original stem cells liquid will be injected in the patient vessel, e.g. the arm vessel, and not in the bone area as I thought earlier.

4) PRP: As an extra service, he includes also Platelet-Rich Plasma (PRP) Injections at the end of the course for better health.

Dr. Jamal performs also other old school treatments such as bone grafting or implants and mix it with the new stem cells treatment.

The interesting part is, with the stem cells taken from your body, as mentioned earlier, you can create any tissue in the human body. In the laboratory they can create a full human bone that can be inserted directly in the gap after the lengthening. It is costly but it can be done.

That's why non union can be fixed with today's new technology without issues. The thing is, not so many LL doctors are specialized in stem cells treatment or tissue re-creation from scratch. Few LL Surgeons around the world apply this treatment as part of the lengthening program. They can probably be counted on few fingers.

[Rocky]

Day 48 Update:

Couple of days ago I started noticing that when I lay down in bed for long time, my right knee becomes very tight and it hurts.

I was telling the physio therapist about it yesterday during the massage time.

In today's session, the physio therapist brought a very tiny needle with insulin syringe liquid. I got small injections in the right knee. Magically the pain in the knee vanished in about 3 hours. I feel much better now.

[Petite888]

Congratulations on your progress. It was really interesting to read how they do the stem cell treatment. I believe that Ukraine is the leading country when it comes to stem cell research development. I remember last year reasearching into Emcell which is the most advanced (to my knowledge) stem cell research developement clinic in the world. This is largely due to the fact that a lot of western countries put a lot of bans/restrictions on stem cell research for ethical reasons, which Ukraine is not affected by.

Even so please remember that the stem cell/ bone graft can come at a costly price (and I’m not talking just money) please be weary when lengthening so quickly as contrary to your belief, I believe, after reading a lot of other diaries on here that callus’s should be showing by now.

Good luck and I wish you the best possible ending to your journey 

[Body Builder]

About Stem Cells Treatment

Dear members

Since we had some discussions around stem cells treatment, I consulted Dr. Jamal during his visit to educate myself and understand how he actually does it.

I thought till today that I knew what it was. But I discovered that I have a lot to learn about the topic.

Let me explain to you for those who might be interested in this topic.

The procedure is as follow:

1) Stem Cells harvesting: When the bone is cut during the surgery, the doctor takes stem cells samples from the bone. The stem cells are not hard bone tissues. Its actually a liquid they suck out in small doses.

2) Stem Cells maintenance: The stem cells are sent to the laboratory where they will be treated, kept in specialized containers and maintained for several months or years.

3) Stem Cells treatment: With the stem cells you can develop any tissue in the body (muscles, nerves, bones, callous, etc.). At the laboratory, they prepare 3 doses from the taken original stem cells:

3a) Osteoclast (bone): This will be injected between bone gaps to create callous.

3b) myoblast (muscles): This will be injected in places where muscles could have been damaged to re-create new muscles.

3c) Neuroblast (nerves): This will be injected in the places where the nerves might have been damaged to re-create new nerves.


3d) Original Stem Cells liquid: And lastly the original stem cells liquid will be injected in the patient vessel, e.g. the arm vessel, and not in the bone area as I thought earlier.

4) PRP: As an extra service, he includes also Platelet-Rich Plasma (PRP) Injections at the end of the course for better health.

Dr. Jamal performs also other old school treatments such as bone grafting or implants and mix it with the new stem cells treatment.

The interesting part is, with the stem cells taken from your body, as mentioned earlier, you can create any tissue in the human body. In the laboratory they can create a full human bone that can be inserted directly in the gap after the lengthening. It is costly but it can be done.

That's why non union can be fixed with today's new technology without issues. The thing is, not so many LL doctors are specialized in stem cells treatment or tissue re-creation from scratch. Few LL Surgeons around the world apply this treatment as part of the lengthening program. They can probably be counted on few fingers.

All these offer nothing if you have a more than 2-3 cm gap. If you continue at the distraction rate you are doing now you'll have a big gap at 5cm (not even more than that) that won't bridge, so in a few words, a malunion.
Malunions of that amount cant be treated with nothing else except from shortening the bone.

So for a last time, keep a serious eye on the calous. If it stays almost invisible stop lengthening.
Otherwise you are going to be in trouble, no matter what Nemer says.

Keep strong!

[Rocky]

All these offer nothing if you have a more than 2-3 cm gap. If you continue at the distraction rate you are doing now you'll have a big gap at 5cm (not even more than that) that won't bridge, so in a few words, a malunion.
Malunions of that amount cant be treated with nothing else except from shortening the bone.

So for a last time, keep a serious eye on the calous. If it stays almost invisible stop lengthening.
Otherwise you are going to be in trouble, no matter what Nemer says.

Keep strong!

Dear Body Builder

I guess you skipped few lines that would have clarified your concern.

Stem cells technology can offer you what you are talking about. In worst case scenario a full human bone from your own body cells can be created in the lab, among other body tissues. It is costly but doable.
 
Since this is probably a new technology that no one has ever addressed in this forum in depth, I guess we (whom are interested in going deep in this topic) educate our self a little bit and consult experts before giving qualified advises to other members on particularly that topic. That includes me by the way.

May God bless you with wisdom.

[myloginacc]

Dear Body Builder

I guess you skipped few lines that would have clarified your concern.

Stem cells technology can offer you what you are talking about. In worst case scenario a full human bone from your own body cells can be created in the lab, among other body tissues. It is costly but doable.
 
Since this is probably a new technology that no one has ever addressed in this forum in depth, I guess we (whom are interested in going deep in this topic) educate our self a little bit and consult experts before giving qualified advises to other members on particularly that topic. That includes me by the way.

May God bless you with wisdom.

We have addressed this in the past. But I think you mentioned Jamal's approach being stem cell stimulation at the end of the treatment.

This is what it entails:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5492338/

Distraction osteogenesis (DO) mobilises bone regenerative potential and avoids the complications of other treatments such as bone graft. The major disadvantage of DO is the length of time required for bone consolidation. Mesenchymal stem cells (MSCs) have been used to promote bone formation with some good results.

[...]

Conclusion

The majority of studies reported that the transplantation of MSCs enhanced bone consolidation or formation in DO.

Dr. Donghoon Lee also offers this approach. That is, stem-cell therapy.


This is a different beast from tissue engineering a human bone.

I do not believe it has ever been done to treat a human being with any kind of limb trauma.

This is the stage we're currently at:

https://www.wired.co.uk/article/lab-grown-bone-biomedical-engineering-osteoporosis-amputees

This technique will be tested on humans in 2020, when an NHS plastic surgeon will deliver a small bit of lab-grown bone into a patient's hand. Once this is in motion, Dalby says, the team will work towards growing the bone putty and adding the scaffolding within a week.

Based on what I know, only a similar, experimental medical procedure has been successfully done: it was by an Israeli biomedical startup earlier this year.

[Body Builder]

Dear Body Builder

I guess you skipped few lines that would have clarified your concern.

Stem cells technology can offer you what you are talking about. In worst case scenario a full human bone from your own body cells can be created in the lab, among other body tissues. It is costly but doable.
 
Since this is probably a new technology that no one has ever addressed in this forum in depth, I guess we (whom are interested in going deep in this topic) educate our self a little bit and consult experts before giving qualified advises to other members on particularly that topic. That includes me by the way.

May God bless you with wisdom.

Nothing on the present times can fix a gap of 4-5+ cm.
They havent done it on UK which is a far superior country in terms of medical things, if you think that Nemer can do it so risk it.
I've done my duty to warn you, anything else is up to you.

Stay strong.

[Rocky]

We have addressed this in the past. But I think you mentioned Jamal's approach being stem cell stimulation at the end of the treatment.

This is what it entails:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5492338/

Dr. Donghoon Lee also offers this approach. That is, stem-cell therapy.


This is a different beast from tissue engineering a human bone.

I do not believe it has ever been done to treat a human being with any kind of limb trauma.

This is the stage we're currently at:

https://www.wired.co.uk/article/lab-grown-bone-biomedical-engineering-osteoporosis-amputees

Based on what I know, only a similar, experimental medical procedure has been successfully done: it was by an Israeli biomedical startup earlier this year.

Hi myloginacc

Interesting information. A scientific approach is always interesting.

Thanks for sharing.

[Rocky]

Nothing on the present times can fix a gap of 4-5+ cm.
They havent done it on UK which is a far superior country in terms of medical things, if you think that Nemer can do it so risk it.
I've done my duty to warn you, anything else is up to you.

Stay strong.

Hello Body Builder
 
IF there is a gap in the first place

We are getting nowhere in the discussion and neither you or I are experts in the field.

Your "duty" is appreciated.

[Rocky]

Day 50 Update:

My physio therapist started using an electro muscle simulator during our massage sessions. I can't emphasize enough how refiling it is for the muscles.

I was told that it comes with different programs and can be used for massage and rehabilitation after the lengthening. I am thinking about buying one myself. But the device that the physio therapist is using seems very expensive.

I am trying to look in eBay and Amazon right now for something similar, but for a budget friendly price. There are many brands so it is hard to tell which are good and which are not.

If you are aware of an inexpensive but quality device, please message me.

[Rocky]

Day 52 Update:

I felt lately that my hips were getting tight when I wake up, so every time we did the clicking during morning time I had to take a break from time to time to relax my hips muscles.

Therefor I did something yesterday and today that I would recommend when you do the clicking. I filled the bath tube with very hot water and I was sitting there for about 10 minutes before I started clicking my legs.

All my muscles were totally relaxed by the hot water, so when I started the clicking it went very fast and totally smooth. I can highly recommend it.

Apart from that, I have been discussing the muscle simulator with my phsyio therapist, because I can really feel the difference in my hamstring muscles every time we use the device. It is very powerful.

My physio therapist will talk with the company where they get their equipment from. It seems that I can get the same device that we are using during our sessions to a discounted price. Looking forward to own my own muscle simulator

[Android]

That's a good idea to warm up your leg to make lengthening easier, makes sense to me; like warming up before exercise, it should make your muscles, tendons, and even bones more flexible.

Word of warning for patients with external fixators: be sure to warm up with the shower instead of submerging your leg in the bathtub, as that will increase the infection rate.

[Rocky]

That's a good idea to warm up your leg to make lengthening easier, makes sense to me; like warming up before exercise, it should make your muscles, tendons, and even bones more flexible.

Word of warning for patients with external fixators: be sure to warm up with the shower instead of submerging your leg in the bathtub, as that will increase the infection rate.

Hello my good friend

Long time. Exactly, the lengthening is a form of a physical activity that needs warm up. It just works fine.

Thanks for sharing about the external fixators for those whom might be using them.

Keep in touch Android.

[Rocky]

Day 59 Update: (Right leg: 6,13 cm & Left leg: 4,29 cm)

It has been a while since I wrote here. I am still clicking and keeping my self active during the day. I have passed the 5 cm on my right leg long time ago and my left leg is getting there soon.

Today I am standing at 6,13 cm on right leg and 4,29 cm on left leg.

When I started the lengthening I was going for 5 cm on my femur legs as my original goal. But in short time I realized that I have passed the 5 cm on my right leg without big efforts. Therefor I have now increased my expectations to at least 8 cm on my femur legs. That means that I need further 1,87 cm on my right leg and I'm done

Since I don't leave the apartment, I noticed something suddenly when I was standing in front of Dr. Jamal while he had his shoes on and I was standing with my bare feet. Dr. Jamal is about 176 cm. I realized that I was looking him almost in the same eyes height when I was talking to him. It came like a shock to me! But it was a nice feeling. It warmed my heart

Along side with this, I have been told to not sit still during the day. So I am trying to walk back and forth in the apartment, do light squats using the walker and use the stepping machine that I've got from my doctor.

When I first got the stepping machine, I could hardly rotate the stepping pad a full rotation. I have been working actively on it since then. So I pushed myself and started by doing 30 seconds 3 times per day.

Afterwards I started increasing the exercise to:

1 min twice a day
2 min 3 times a day
5 min 3 times a day
7 min 4 times a day
10 min 3 times a day

My legs are getting much stronger. This is an essential part of the rehabilitation even though I am still lengthening.

So next step: 10 min 4 times a day and hopefully soon I will be doing an hour per day in 10 or 15 min intervals. This is the ultimate goal.

[Milko]

Hey rockey,
Quick question from one fellow lengthener to another.. what stepper are you using? any chance you could send me a link to something that looks similar?

Thank you!

[Rocky]

Hey rockey,
Quick question from one fellow lengthener to another.. what stepper are you using? any chance you could send me a link to something that looks similar?

Thank you!

Hello Miko

Sure. I am no expert in stepping machines. I just got this one from my doctor and it turned out to be very useful. I have posted a picture of it in an earlier post. Here is how it looks like:


https://imgur.com/a/92tTkiW

You can step on it while you are standing or sitting. I step while I am sitting.

By the way, I have put a bit of pressure on my self this morning. I did 20 minutes in the morning and 20 minutes this afternoon. You can rotate front wise to activate the front leg muscles (I did it for 10 min today) and then backwards to activate the hamstrings (I did another 10 min too).

Everytime I complete a set of 20 min, I feel my heart is pumping inside my legs. But when I lay down on bed for 30 min or so, my legs feel so relieved. The tense goes away. Nice feeling. I would recommend you such a machine during your rehabilitation.

I hope I have answered your question. Have a pleasant day and may God bless you.

[Rocky]

I just unfolded my pants from my traveling bag and took them on. The ones I had on when I came to the airport the first day. I noticed that my legs were sticking a bit further than normal below the edge of the pants. But I went to the big mirror in the apartment hall to view my self from top to toe.

When I looked at the mirror, my first impression was like: "What the...?"

I noticed how short the pants became. I looked like a funny cartoon figure from Disney with my old pants on 

I can't believe what is happening to me. The whole thing feels so surrealistic I am starting to enjoy my new height even though I am not even done with the full lengthening

[Rocky]

Day 63 Update:


I was bragging to Dr. Jamal about my stepping machine progress. I reached 20 minutes 3 times a day in no time. So an hour every day.

He advised me to change my approach a little bit. Instead of putting many minutes in one shot with long breaks in-between, he would rather see me spreading the exercise in 2-5 minutes intervals from morning to evening. He told me to step on the machine for example every hour and give it 2-3 minutes. To keep my legs regularly active on the machine without long breaks. And from time to time give it 10 minutes or more. So I will follow this advice.

He examined my legs and advised me to not click the right leg for couple of days. I should still continue with left leg and give right leg a small break.

Right leg became a bit "heavy" and tense lately. My right knee is bending and the hamstrings muscles feel like a piece of stone. So I will give the right leg some peace for couple of days.

[tlannister]

so when is the next x-ray? and are you going to avoid posting it here?

[Rocky]

so when is the next x-ray? and are you going to avoid posting it here?

Hello tlannister

We did a CT scan on day 59. That's why I knew exactly my height in my earlier update. We are going for another CT scan on 2nd of July.

But I didn't post it on purpose because I don't want my head to be filled with negative energy from some of the non qualified comments from some of the members in here. This is the last thing I need while I am fighting this LL fight. I need to keep my spirit high.

Life tought me to filter away any negative energy while aiming for a goal.

[myloginacc]

Are you American, Rocky?

Do Americans call plain X-rays "CT scans" or are all these CLL doctors doing regular CT scans in the process of CLL?