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[KiloKAHN]

I think going up and down stairs is one of the last things that starts to feel normal again. Even now I'm still not fully used to it, but it gets better. Just got to give it time.

[crimsontide]

Kilo, I'm not not talking not normal. I'm talking  extreme effort. I can't do it without holding on to something

Kirk, I'm not freaking out and not about to do it. I need to have function back though. I'm hoping intensive therapy does it , but if it doesn't , I need to do something to get my function back. I'm not simply going to accept it. Function now to me is all that matters , not aesthetics   

I'm going to do intensive physical therapy  but I need s backup plan in case it doesn't work.


Music maker , you care only about looks . We are very different people. I need to be able to enjoy life as I used to , walk normally , etc

Dr Monegal says it's just pt and and strength.  Wasted muscles. After pt, he says I should be fine

But I need a plan b. I don't accept less than 90 %. Hopefully on s few months I'll be 95% but not even close now

[JourneyToTheEast]

Crimsontide, you came off like someone who has mental issue (this is not a personal attack, this is an observation). I go over your posts again; you whined pretty much ever second post. It looked like you spent more time whining than working on your recovery. What are you whinning about? It seems like Dr. Monegal did the best he could (and the result is good) given the fact that you got yourself butchered by incompetent doctor(s). Now, the doctor and everyone here are asking you to complete the last mile of your LL journey with hard work (a recovery routine). Work your ass off. Take as much physio sessions as you can. Do whatever it takes, through sweat and blood to get better. There is no magic pill. As of now, you belong to the same group as that guy by the username Leechlet. His recovery was horrible - everyone knows why. The best doctor can only do so much; the rest is up to the patient.

What is your recovery plan like by the way?

[chsn]

Haha dude chill out, stop thinking about amputation and focus on your recovery....To much drama bro

[Ozymandias]

I'm starting to think I'll need to get the lower left leg amputated and s prosthesis put on if i want my function back.

I don't accept less than 90 %. Hopefully on s few months I'll be 95% but not even close now

I guess it's easy to get overemotional when you are facing the rough side of LL, but please read your own words. You don't accept less than 90% but however you are considering amputation. Do you really think that you will be at over 90% with a prosthesis? Not everyone is like Pistorius, man. You will be 50% at best, and aesthetically it would be a catastrophe.

Trust your doctor and if you don't, get a second opinion. Stay strong with the PT. Good luck!

[becometaller]

No need to amputate bro. But I agree with you in everything else.

[bluebarbie]

Hi,,Chrimsotide.
  There is no turning back once u are in the process of LL and we understand ur frustration. But we want u to keep on fighting with all ur best because there will be a day when u could sit back and enjoy all those hard earned price. Just  keep on and on fighting till u get what u deserve. 
Best of luck

[becometaller]

Crinsomtide is not crazy. He is having  a rough time. He is a good guy who has had to deal with ugly outcomes and incompetent or unethical doctors. Its not his fault.  This could have ahappened to any other LLERS.

Crimsontide, you came off like someone who has mental issue (this is not a personal attack, this is an observation). I go over your posts again; you whined pretty much ever second post. It looked like you spent more time whining than working on your recovery. What are you whinning about? It seems like Dr. Monegal did the best he could (and the result is good) given the fact that you got yourself butchered by incompetent doctor(s). Now, the doctor and everyone here are asking you to complete the last mile of your LL journey with hard work (a recovery routine). Work your ass off. Take as much physio sessions as you can. Do whatever it takes, through sweat and blood to get better. There is no magic pill. As of now, you belong to the same group as that guy by the username Leechlet. His recovery was horrible - everyone knows why. The best doctor can only do so much; the rest is up to the patient.

What is your recovery plan like by the way?

[maximize]

My functionality is 30.%. Of what it used to be

Just went up and down stairs. Had to hold on to something and was a lot of effort

95% is not close

We will see what therapy does

I'm starting to think I'll need to get the lower left leg amputated and s prosthesis put on if i want my function back.

And that's not a joke. But we will see what pt can do

I just don't think any others   Went through this so I'm  doubtful but we will see

That's insane to think about getting amputated just due to muscle wasting from multiple surgeries. If you're desperate, you'd be better off injecting steroids for a few months to boost back your muscle development. Once your muscles come back (and it will take months to do so naturally), if your alignment is good post op, you'll be back to normal function.

Muscle rehabilitation from severe wasting takes a very long time naturally. But it will happen.

[crimsontide]

maximize

its not just muscle

i have injected steroids... hasnt done a thing for my issues

my walking is beyond bad

my right is ok, could need some improvement, but will be 100% i think

my left... its not just muscle waste... im pretty sure

maybe bad achilles,etc. i dont know... bone too feels weak

ill have x rays again very soon

im hoping for normal function, but we will see

ozy... 50% with modern below leg prosthesis??? not a chance....  more like 95% or better

aesthetically s a different issue, but i could not care less. i only care about function

50% with 1 below the knee modern prosthesis is   way off... forget pistorius... i can give plenty of examples from my own experience

and will see if intensive pt and massage helps

i hope ill be back to normal, but really not sure about left leg...

journey... you have no idea what youre talking about ... you actually believe all the diaries on here??

i can tell you 100% that many people that post here with good things to say are very different if you speak with them in private... im not saying everyone, but many. this is a fact

ty becometaller... im not sure of outcome yet... im very positive about right leg... it seems ok now to be honest, maybe some little recovery is needed... but my left leg is a mess... maybe intensive therapy will help,etc... but i have some sural nerve damage... supposedly the sural nerve doesnt  impact function, but who really knows

and the leg now feels very very very weak... not just muscle, but we will see soon

achilles surgery too takes a long time to heal from... right leg was ok, but again, everything with the left leg has been worse... from recovery, to achilles, to scar, to corrections,etc

[Ozymandias]

aesthetically s a different issue, but i could not care less. i only care about function

If you don't care about aesthetics, only about function... why did you did Limb Lengthening?

And the >95% function with a prosthesis still sounds like sci-fi for me. How about balance, sensitivity, complex movements, etc?

Don't take a decision that you might regret for all your life. And I think that any doctor will advise you against it unless your pain is unbearable and with no chances of recovery.

Hang in there, I'm sure things will get better if you stick with serious PT.

[crimsontide]

Ozy,

I didn't care about just function before. This process though has changed that.

When you can't do normal things anymore , your mindset changes.

When I talk about function being 95%, I'm not talking about feeling or sensitivity. I'm strictly referring to walking , jogging , etc.  that's it.

I haven't decided on it though. I'm hoping pt works but becoming more unsure of left leg.

[crimsontide]

well...


i went up stairs other day without assistance, though i looked a bit odd

my right achilles/calf is just very sore all the time.... not sire why, but i think it can be fixed, and the legg will be ok... just some more pt... hopefully can get full push off strength back

my left leg, which was the bad one, is still not that good... still a limp, and just feels  a bit dead... i

i walk a lot now, and its definitely helped, but not near where it needs to be

ill do intensive physical therapy a few months and see  how I progress

I have confidence regarding right leg being near 100%, but the left one, no

im pretty sure that my left leg is still off... the bone issue combined with achilles, and slight sural damage makes me more skeptical about this leg

im determined to get back to normal, so i will get there, even if i do something extreme on the left leg

[G-Man]

im determined to get back to normal, so i will get there, even if i do something extreme on the left leg

If so, good luck finding a surgeon who will amputate a healthy leg.  Have a nice day!

[crimsontide]

healthy leg???

huh??? you must be absolutely illiterae if you think my left leg is "healthy"

if you mean the achilles is destroyed, bone still isnt 100%,  nerve damage... yes, it's healthy

[crimsontide]

i seem to be a bit better

but my left leg still has slight limp... and both calves/achilles are very sore


im also walking so slowly... not sure if its dude to achulles surgery

i need to get back to a normal pace... or at least close to it... just so weak compared to before

i can go upstairs now, oddly, but still unsure aboit going downstairs

[Penguinn]

It's good that you're improving, I've read recoveries are different for everyone.

You should exercise for months and consult a million doctors before deciding on amputation.

No way you'll get back to normal by amputating a leg.

[LLuser1]

Updates?

[crimsontide]

update is im better . but nowhere near where i need to be

my left leg still is weak,and has a limp. my right look looks ok when walking

the issue is strength... not sre of its due to my past achilles issues, but i can walk   fast  no matter how hard i try

i have to put a ton of energy into walking at a normal pace, so its hard to walk   anything but a short distance

I can barely do  heel raises now, which is better than before, but nothing compared to how i used to be...

 my walking is very strained.... i keep hearing i just need more pt, strengthening, but ivdont know... my achilles/calf area is just so weak

now regarding the lower leg amputation, this is what everyone needs to understand

my legs,  especially my left leg  has little push off power... thats the reason for my issues... just so stiff, and weak...

id guess im 40 to 45% of what i was.... and this ALL due to my achilles issue... though my left leg has a few other issues

i mention lower left leg amputation, because they technology now that mimics the achilles/calf, and can  be as efficient as a normal leg

no, its not the same thing, but   id be generating A LOT more push off strength from this  device than i can now

its not like im trying... my achilles is so weak, that when i walk, im expending a  lot more energy than a normal person would

its just awful to be honest and very depressing... i need to lose 30-35 lbs now,etc because i literally have no life

i spoke with the dr that did my achilles, dr shah, and he just says to come do a reconstruction to get more strength.

i just dont believe  i can gain  much more strength.. tgis is not me being a defeatist, or lazy

I should have done more research, and not listened to the dr when he said no loss of strength from achilles surgeru

look up studies on achilles lengthening... there  seems to be a permant loss of oush off power, and its a significant loss

now thats for only 1 leg... i had open achilles lengthening on 2 legs.... we are likely talking a severe permant loss of push power

dr paley told me as such... i asked him could i get  back to 90% after achilles lengthening... he said very bluntly, NO.

He flat out said no... he said maybe with gastroc recession... he mentioned achilles shortening, but not 100% assured it will work

Dr monegal thought I culd make a full recovery, but I don't think he realized  what the other dr had done

when monegal does a tenotomy, he dos it the day of the surgery, makes small incisions, and, i might be mistaken,  but makes a tear, so the tendon can stretch

its my nderstanding that he does not actually cut the tendon completely, then  stitch it up after a lengthening

  he knows now that i had an open surgery months after my initial operation, and that my ballerina was very severe... he was shocked at why they hadnt fixed it before

i had -60 degrees  flexion

now dr monegal didnt say im screwed, but i did  sense a change in his texts to me

i think the only way i get back to a normal life is by   getting a rtand new lower leg... my left leg has many issues

  1-  nerve damage... i cant feel part of my left foot... it is supposedly sural damage, which isnt supposed to hurt function, but thats not really true... it does create a defecit

2-    open achilles lengthening, with large nasty scar... this has futher weakened my left leg severely

3- further surgery to correct  a deformity, which has  left me with a rod and scress in my left leg... now it doesnt matter which dr does this surgery

this is further trauma to the leg, and has further weakened my left leg..

when you put all this together,  i hope members can see why i think about lower left leg amputation... it isnt because i think ill be  100% pre surgery...  but i do believe it would improve my current situation...

look up the iwalk biom... people can walk fast, jump, and even jog on this thing

its possible to get  to 90% of what you were

my left leg is maybe 30% of what i was, and the achilles lengthening likely caused  permanent damage... certainly the nerve damage is permanent...   it hasnt changed in well ocer a year

i hope everyone now understands my situation, and my thinking.. maybe some will still disagree, but they wont think im totally crazy now

i have advice for members considering this operation

do not do it...

I am very depressed today... cant go enjoy a walk, 30 lbs overweight...

its not worth being 7 cm taller if you barely go out

im determined to get bac to normal, but   doubt its possible without further  surgery

[KrP1]

Have you done any reseach about GH (grow hormone) ? Ask to a specialist if this could help you. I remember to see something about tendon recovery with that

[crimsontide]

I'm familiar with hgh, but I don't think it'll do much

the weakening comes from the lengthening itself.  My left leg has so many  issues that have weakened my leg... i really be surprised if anything could my left leg back to an acceptable state... just too much permanent damage and trauma.. id like to believe im wrong, but in my brain, i know the odds are against

only hope i have of walking normally at a decent pace  is  an advanced lower limb prosthesis

 the amount of energy i have to expend to walk at even a normal speed is truly unbelievable

and  with my friend today, i told him to walk fast, but fast in the sense of being in a rush

he did it, and just flew right by m... i couldnt get  near me.... i just do not have the power in my   lower leg... i tried walking as hard as i could, and i coukdnt come close to him, and he was just doing a normal  sped up walk

it was very disheartening...  there's no  power being generated... and this seems to be a soft tissue issue... doesnt seem like muscle herapy is gonna fix this power loss

[TIBIKE200]

hang in there. I am sure everything will turn out on the bright side

[Tiny]

crimsontide,

Have you ever thought that maybe the problem lies within yourself and not with your legs, not with Dr. Shah, not with Dr. Bagirov, and, heck, not even with your ex-gf? I have been following you diaries and you seem to be very stubborn and impulsive. You complain about everything and do not think through your decisions very well.

Dude, you're always in denial. You ask for forum member's opinion but you never listen to them. It seems that you ask for opinions because you're only seeking for reassurance.

I'm gonna walk you through some of your decisions here:

First, you partly blame Dr. Bagirov for your problems because you think he's subpar. And whose fault was that? You went to him (a doctor lacking credentials) instead of Mitkovic (who has more credentials on this forum and old forum) because Mitkovic was not replying to your emails. Have your ever thought that maybe he's freaking busy? or you annoyed the heck outta him with your emails?

Btw, you said:

just as a heads up to anyone thinking of mitkovic....   don't even try.... he won't contact you...

I emailed him a month a ago, and I received a reply in less than 24 hours. Maybe you should improve the way you write too (punctuations, tone, etc.) then maybe your emails can be more enticing. But whatever, this isn't a big deal.

Second, you decided to undergo release surgery despite the opposition from this forum and even from your doctor, Dr. Bagirov, because you said:

nothing wrong with  getting a release....  like i said,palsy does it all the time

Please enlighten me on this one. Where's the logic here bro?

wannabe, lets take this very logically... start with premises we can agree on

1- palsy does releases

2- paley does do it not just  as a fix, but as a preventive measure

i think  we can logically infer that the reason for doing the release beforehand is because  in his mind, the complications of ballerina outweigh the risks of the release?

So if Paley told you to eat sh11t, you'll eat sh11t?

And then, you took your frames off a few months early because:

i guess  healing is really  down to your genetics, as far as bones go... ill have frames off before many others...I'm convinced though that the reason others don't heal so well are the long times in frames

A few months after..

but i have somewhat bad news

i  had the surgery, then had casts put on because of the achilles... thought the cast would keep leg in place

well, my right leg which was healed, is straight, but my left leg is not

I am not trying to attack you or something. I just want to knock some sense into you and want you to be fk1ng strong. I really feel sorry for what you are experiencing right now. I truly am. However you brought these problems to yourself. Dude, I urge you to see a Psychiatrist/Psychologist right now. And don't fk1ng amputate your leg. Whatever, your brain tells you. Just fk1ng don't. Just for once, listen to us.

[crimsontide]

Not sure how multi quote

Bagoriv's frames are too tiny, and aftercare was nonexistent... I don't think anyone can disagee with that... Who knows how "its my life"  is now,

I never really considered Mitkovic because of the momorails...  He actually emailed me.  Mitkovic has had more than a few bad cases

Bagirov   technically a never told me anything... He speaks no English at all, and was very hard to reach him.  A bigger problem is  no one else speaks English at his office, so you have to wait forever to get a reply... That might have changed


You did not read my diary carefully if you think I took off the frames because I wanted to...

Dr shah took off the frames because he said it would be okay... My right leg turned out to be okay,  but left one did not..  When I contacted him about it,  his response was "  i expected that this could happen, no problem, come see me for correction"

He said the exact opposite before the surgery

 I'll say more about Mitkovic... he has had many issues... including  legs simply caving in due to his nail and frames.. T

Tiny, you seem to to think that I'm a rare case.. you have not had this surgery,  but I can tell you   most patients are suffering  problems... I'm just very open about it, and don't accept it

Look at rgkey... he posted a video of him squatting, but he doesn't actually do even 1 real squat.. now maybe that's acceptable to him and others, but not me

Kilokahn has issues going downstairs, etc... Ask yellow if he's healed yet

Who is the patient of Paley that has leg snap?? I can list a few more, but won't because they wouldn't like it...

Look at Sweden... he posts that he still sometimes has days he can barely walk...l ook at his videos...    this is a person that was a  great athlete. Swden is honest about his situation

If you go through the diaries, the success rate is quite low.. Some people that post positive things on this board can not even walk after over a year...   This is fact btw, and not conjecture... When I say can't walk, I don't mean someone like myself, who just can't walk as they used to.. I mean they use a wheelchair....

You contacted Mitkovic recently, which means you're thinking of this surgery

I was very similar to you... I'd read the diaries,  and think most seem positive... those guys complaining   only have themselves to blame... I'll be fine

That is not the reality...  I'm just very open about it

To give an example... I see Kilokahn's video of his walking... Now this may surprise the board, but I can walk similar to that... From my writing, that might be a big surprise, but I'll explain

You can't notice the amount of energy I use to  walk normally... or how it feels...  So it's simply not acceptable to me...  and I can't walk at speed... I can walk at the speed shown in Kilokahn's video, but  can't speed up. At the airport,where everyone is in a rush, 60 year old men leave me in their wake

This is not acceptable to me... I'm starting to think that it's not simply the achilles release that is the issue

I've heard of 2 patients recently that have soft tissue issues, or can't walk as fast as they used to because of tightness. Kirkp1 posted about it too. Maybe time and therapy will fix the issue, but  it's not so straightforward

My left leg has multiple issues... push off strenth is the biggest one....If my tendon and nerves are shot, along with bone issues, then this leg is basically  almost useless... not totally... it still technically works, but is so damaged that I barely do anything involving walking.

I'm  not the only one either...  Ask Sweden about his ankles.... and there are others...

My condition is just not acceptable to me.. to others, maybe they're okay with    walking speed reduced, or arthritis, or any other of a host of problems.

For me, it's not acceptable... The energy required for me to  simply walk normally  prohibits me from  walking  anything longer than a few blocks. T Uncomfortable blocks too

Perhaps more exercise will improve me to 90%, but maybe not


Technology has  improved so greatly that  a lower prosthesis is certainly better than a limpy 40% leg

My uncle is 74..He just had his lower left leg amputated

There are patients at his facility that can jump rope, and  jog with their prosthesis.

 I can barely do a heel raise...  I couldn't jump or jog now no matter how hard I tried.    Soft tissue damage is very hard to fix.. It's killing my walking ability


I hope to recover... Monegal feels I will, but who knows...
You can choose to believe I'm an anomaly, but it's  false... This is not my opinion either...

Tibike, thank you   

[LLuser1]

Hope you get better Crinsomtide. You have reason... this surgery is not a fking joke and it is disgusting how some doctors contradict themselves.

You are a Monegal patient. You have met his patients. You know I'm telling the truth. Musicmaker can't walk since 2014. Big fking disaster. Others can't walk as they used to. Not their fault but they aren't as open as you. Some of these people are delusional.

All things you say about patients in the forum are true. They are not healed even though they post positive things. People lie for many reasons. This is serious surgery and doctors should tell the truth instead of 'selling' their services.

[Alu]

I have to agree with Crimson on this. This surgery is an extreme decision that shouldn't be taken lightly. Unless you need it psychologically speaking I wouldn't recommend it at all. Nothing is given when it comes to this surgery I'm sorry to say.. I'm an optimistic myself but if you don't have to do it: DON'T

[Tiny]

crimsontide,

You did't get the point of my post. I never said that the surgery should be an easy process. You see, the problem with you is you always have someone else as a scapegoat. All I am asking you is to self-reflect and see what you did wrong on your part. I walked you through some of your decisions because I wanted you to see their consequences and not make the same mistake. Sure, we have advanced prosthesis but not unless we have some Full Metal Alchemist sh!!t, then nothing can be better at replacing your leg.

Yes. I am thinking of getting this surgery. But I am not very optimistic about it. I inquire my local doctors to help my decision making. I weight the pros and cons. I read diaries--good and bad. I never expect this process to be easy.

Just keep on fighting. Don't make impulsive decisions anymore. If Dr. Monegal believes that you'll get better, you gotta trust him. I hope you get better soon.

Tiny

[Overdozer]

What the fk dude, don't amputate your leg 

I know exactly what you're talking about the walking issue - I had two periods after lengthening when I had to relearn how to walk. At first it's very tiring to walk, I think it is because the muscles that are responsible for stabilizing the gait are atrophied after LL because you don't get to use them fully. I had to put a lot of strenght at first to walk 'normally' and my muscles would fill with blood really fast I couldn't walk anymore but it gets better with time. When I did my 'walking excercises', at first I could barely do 1 km, after each 'walking session' I felt the atrophied muscles in pain (same feeling when you workout hard), and each time after they recovered I could walk more and more up to 10 kms and that's only in a few months. Imagine what you can get in an year or more. Just give it some time, it should get better eventually.

[crimsontide]

I received a message from someone on board... can't say who it is


but we have been talking lately... he agrees with me about bagirov... good surgeon, but aftercare,not so good

I also received some good news

I will see a therapist, do ultrasound,etc... but  if i have to get a correction for my achilles, it can be done

Dr Shah lengthened my achilles by sliding the tendon... which means i still have all of my tendon... but one part is slid downward.... it means its much less thick now, but easily correctable.... in worst case scenario

if the z lengthening was used in my case, I would have had very few options... as that involves actually removing some of the tendon

My  biggest issue is my push off strength... which is almost 100% due to my achlles being weaker because it is significantly thinner due to the sliding

[crimsontide]

bagirov just changed his tune again

One of his patients contacted me

look, here's the deal

do not get this surgery, unless you have a minimum of a hundred thousand $ saved up, and even then, better to not get it


do not get it in india, or russia

dr shah  who is supposedly one o the top 3 drs in india for this, is simply a liar.

the guy just flat out lies... when i saw him, i asked him very directly.." will this weken my leg"  his reply was no,.

After I had surgery done, he tells me my achilles will be weakened at least a grade...  At that time, didn't think too much of t, as I didn't realize t how  much weaker it could be

He took my frames off... put me in a cast... I asked him before the surgery..." can my  left leg bend?"  his reply was no chance

few months later, leg has 2 deformities... I email him, and his reply is " we expected this, come in, we will correct it"

Correct it   not for free btw, but at a price greater than the original surgery

Dr Shah would not have a license in the United States..   there is no doubt about that

now my situation is this.... I can barely do a heel raise, and can't really walk anywhere... I have very little push off power, and that is 100% due to shah

He tells me only way to strengthen achilles is through augmentation... that is a   not very specific....  can mean a million things

I wish I could walk 10 kms, but if I did, it would take an enormous amount of time because  to walk at a even a normal pace, I have to expend a great eeal of energy...  I'm basically expending twice the amount of energy as a man with 2  ty old school prosthesis

I have amost given up on the left leg, since that has nerve damage, and resigned myself to the fact I'll have to eventually get a lower leg prosthesis to walk normally

I'm hoping to make the right stronger, to 90 or 95%, but not sure...  Almost certainly will have to shorten the tendon and see if that works

if you look at the tendon, and what happens when it's lengthened with the slide technique, you realize there's no ay the tendon can be nearly as strong... it's much thinner and longer... it's impossible... only way  is to slide it back, and fix i that way

it's simple mechanics.... much thinner and longer tendon vs shorter and much thicker tendon

no amount of therapy or muscle building is  going to change that fact

bagirov... this guy is another one... decent dr though, bt aftercare is nonexistent...  I've had a few messages from people saying they regret going to him

at this point, i'm gonna stick with Monegal,  and do what I need to do.....

Do not go to Russia, or India

trust me on this

[crimsontide]

dozer,im gonna try more

and will back in spain to do similar treatments

but I need to be realistic here... I fked up by going to to Shah... That was my huge error

I just do not see how muscle therapy alone is gonna fix my issue... my  achilles tendon is much thinner and longer now.. can't be nearly as strong...  Only way to get it back is to reverse the procedure

I'll post a pic later.....