Quote from: TheRisingShorty on December 07, 2014, 06:29:29 AMChances of amputation or death is very slim to zero with a good surgeon. Deep infection, embolism and compartment syndrome can happen regardless of how much you lengthen, the latter two mostly happens after surgery. Non-union could be multifactorial and nerve damage could happen with higher lengthening amount. There have not been any reported amputation cases in forum patient diaries but I have read studies that exclude some patients from the study because their outcome was amputation. They don't state the reason why they were amputated but these patients did have pre-existing trauma before fixation and some resulted in osteomyelitis and non-union. Compartment syndrome, complex non-union and osteomyelitis resulting to amputation have been reported in studies.
Just remember that these are worst possible outcomes to LL, although rare with a good surgeon. Judging from some of the posts in this forum, it seems that some prospective LL'ers take this surgery very lightly and believe that they're immune to very serious complications. It's not a good idea to be overconfident. You must consider and accept the worst case scenario before LL. A forum member did experience a life threatening condition a day after his surgery and he immediately had to be shifted to the ICU unit, despite having surgery with the best. His experience was horrifying and seriously made me reconsider LL. It was an eye opener. I believe that majority of serious complications related to LL will not be reported in LL forums and only a very few percent of LL patients do have diaries.
Very good comment. There's a clear bias in the forums not to show the complications. I have been attacked several times for writing about what i have seen at a very popular doctor. Nobody gets attacked for writing nice things. Even patients with diaries try to hide negative things (they are still under treatment , how could they dare openly criticise their doctors? ) . They rather stop writing or simply don't tell the truth.
I personally believe if i went to India my experience wouldn't have been worse than what has happened to me in Germany.
Quote from: TheRisingShorty on December 07, 2014, 06:29:29 AMChances of amputation or death is very slim to zero with a good surgeon. Deep infection, embolism and compartment syndrome can happen regardless of how much you lengthen, the latter two mostly happens after surgery. Non-union could be multifactorial and nerve damage could happen with higher lengthening amount. There have not been any reported amputation cases in forum patient diaries but I have read studies that exclude some patients from the study because their outcome was amputation. They don't state the reason why they were amputated but these patients did have pre-existing trauma before fixation and some resulted in osteomyelitis and non-union. Compartment syndrome, complex non-union and osteomyelitis resulting to amputation have been reported in studies.
Just remember that these are worst possible outcomes to LL, although rare with a good surgeon. Judging from some of the posts in this forum, it seems that some prospective LL'ers take this surgery very lightly and believe that they're immune to very serious complications. It's not a good idea to be overconfident. You must consider and accept the worst case scenario before LL. A forum member did experience a life threatening condition a day after his surgery and he immediately had to be shifted to the ICU unit, despite having surgery with the best. His experience was horrifying and seriously made me reconsider LL. It was an eye opener. I believe that majority of serious complications related to LL will not be reported in LL forums and only a very few percent of LL patients do have diaries.
Questions rising shorty,
1. Why will non-union lead to amputation? Worst case let it stay unconsolidated, walk with crutches all your life.
2. Are there sudden "signs" of these dangers: nerve damage and compartment syndrome? So that you can stop lengthening in a timely fashion? It's not like you go to bed doing 1mm and the next morning it's over, right?
3. You seem to have a tone of someone prepared for this kind of stuff? Could you have really lived through if you faced a leg amputation? I don't understand how someone who feels so unhappy being short and considers a ridiculously crazy procedure can accept such an adverse outcome. No offense, just curious.
Quote from: Slim_tim on December 07, 2014, 07:33:06 AMmehh if its amputation, Just end your own life fast easy. Not alot lost. But if you gain that new height. life begins. 50-50. Only the worthy survive
how do you suggest we end our own lives?
Quote from: Mime on December 07, 2014, 11:54:47 AMVery good comment. There's a clear bias in the forums not to show the complications. I have been attacked several times for writing about what i have seen at a very popular doctor. Nobody gets attacked for writing nice things. Even patients with diaries try to hide negative things (they are still under treatment , how could they dare openly criticise their doctors? ) . They rather stop writing or simply don't tell the truth.
I personally believe if i went to India my experience wouldn't have been worse than what has happened to me in Germany.
What happened to you?
Quote from: Mime on December 07, 2014, 11:54:47 AMVery good comment. There's a clear bias in the forums not to show the complications. I have been attacked several times for writing about what i have seen at a very popular doctor. Nobody gets attacked for writing nice things. Even patients with diaries try to hide negative things (they are still under treatment , how could they dare openly criticise their doctors? ) . They rather stop writing or simply don't tell the truth.
I personally believe if i went to India my experience wouldn't have been worse than what has happened to me in Germany.
I'm very sorry to hear that
Get well soon
Quote from: Mime on December 07, 2014, 11:54:47 AMVery good comment. There's a clear bias in the forums not to show the complications. I have been attacked several times for writing about what i have seen at a very popular doctor. Nobody gets attacked for writing nice things. Even patients with diaries try to hide negative things (they are still under treatment , how could they dare openly criticise their doctors? ) . They rather stop writing or simply don't tell the truth.
I personally believe if i went to India my experience wouldn't have been worse than what has happened to me in Germany.
Unfortunately many people do dismiss things they don't want to hear. I'm really sorry for what you have gone through and I hope you do recover soon.
Quote from: SAD on December 07, 2014, 12:12:36 PMQuestions rising shorty,
1. Why will non-union lead to amputation? Worst case let it stay unconsolidated, walk with crutches all your life.
Not all non-unions will lead to amputation. These days many cases are resolved with proper Ilizarov techniques, stem cells and growth factors but for some people non-union can last for many years or even life time and face complications such as fractures and infections. So they opt for amputation. Here is a study on non-unions http://actaorthopaedica.be/acta/download/2000-3/laursen-lass.pdf. There is one patient who requested amputation because he suffered from non-union, complications, disability and severe pain for 15 years.
Quote from: SAD on December 07, 2014, 12:12:36 PM2. Are there sudden "signs" of these dangers: nerve damage and compartment syndrome? So that you can stop lengthening in a timely fashion? It's not like you go to bed doing 1mm and the next morning it's over, right?
Yes, there are sudden signs of compartment syndrome and embolism
Here are some notes I prepared before my surgery and stored in my laptop for reference. You can call me crazy lol.
Compartment Syndrome
http://www.medicinenet.com/compartment_syndrome/article.htm
Signs:
Bleeding causes compartment pressure to rise and diminishes blood supply to nerves and muscles leading to:
-Pain exceeding the expectation of trauma
-Paresthesia (change in sensation) e.g tingling, tickling, prickling or burning of skin, pins and needles
-Paralysis of limb
-Tightness
-Bruising
-Swelling
Risks:
-Occurs hours or days after trauma
-Trauma include surgery, muscle, vascular damage
-Person with a history of anticoagulants
-Dressing, casts, splints constricting affected parts
-Permanent nerve and muscle damage mostly occur if patient is unconscious or heavily sedated, failing to report pain. Can occur 12-24 hours after compression
Treatment:
-Fasciotomy (making long incision on skin and fascia to release pressure)
-Removing cast, splints and dressing
Prevention:
-Early diagnosis and treatment should prevent complications
-People with cast should report pain under cast due to swelling, despite taking pain medications
Fat Embolism
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2700578/
Signs:
-Occurs 24-72 hours after surgery/trauma (maximum at 48 hours)
-Tachypnea (rapid breathing)
-Dyspnea (shortness of breath)
-Cyanosis (blue/purple discolouration of skin) in head, neck, thorax, sub conjunctiva, underarm
-Hypoxia (oxygen deprivation in body or region of body) Maybe detected hours before respiratory problems
-Cerebral problems e.g. confusion, drowsiness, rigidity, convulsions(rapid muscle contraction and relaxation)
-Tachycardia (rapid resting heart rate)
-Jaundice
Risks:
-Trauma of pelvis and long bones
-Overzealous nailing of the medullary canal
-Reaming the medullary canal
-Increased velocity of reaming
-Increase in gap between nail and cortical bone
Treatment:
-Mechanical ventilation to maintain arterial oxygenation
-Albumin with electrolyte solution to restore blood volume and bind to the fatty acids to decrease lung injury
Prevention:
-The use of plates and external frame or smaller diameter nails decreases FES by reducing injury instead of nailing and reaming the medullary canal
-Using a pulse oximeter to monitor 02 saturation in blood therefore early desaturation will allow early oxygenation treatment to decrease hypoxic and systemic damage
-Preoperative use of methylprednisolone may prevent FES
Pulmonary Embolism
Cause
Blockage of lung artery from a blood clot developed in the deep leg veins.
Signs:
-Sudden shortness of breath
-Sharp chest pain and worse especially after cough or deep breath
-Pink foamy mucous cough/bloody cough
-Sweat a lot
-Anxiety
-Light headedness/faint
-Fast heart rate/breathing rate/irregular heart beat
-Heart palpitation
-Signs of shock
Risks:
- Surgery involving both legs/breaking bones where arteries/veins are affected
-Inherited risk of developing clots
-Slowed blood flow from long term bed rests after surgery, sitting for a long time, leg paralysis
-Abnormal blood clotting from blood vessel injury
-Not taking anticoagulents
Treatment:
-Anticoagulants (3 months after embolism or through life if risk remains high)
Hospital use of IV or shots/Home use via tablets
Slow down clot development and prevent clots getting bigger. But do not break up or dissolve existing blood clots
-Thrombolytics for extreme life threatening situations
All thrombolytics are capable of causing serious bleeding and capable of causing stroke and death.
-Embolectomy via surgery or catheter into the blood vessel
For patients with life threatening clots and cannot wait for medicine to work or for other failed treatments. Increases chance of developing more clots.
-Vena cava insertion into large central abdominal vein after failed anticoagulant treatment or bleeding risks fem anticoagulants. Or if a patient has an increase risk of death or restricted lifestyle for a recurrent emboli. Can break or be blocked with blood clots.
Prevention:
-Daily use of anticoagulants stops formation of new blood clots and prevents further growth of existing clots.
-Movement after surgery
-Compression stockings
For nerve damage, signs will be tingling, severe pain, loss/abnormal sensation, paralysis and loss of motor control.
Quote from: SAD on December 07, 2014, 12:12:36 PM3. You seem to have a tone of someone prepared for this kind of stuff? Could you have really lived through if you faced a leg amputation? I don't understand how someone who feels so unhappy being short and considers a ridiculously crazy procedure can accept such an adverse outcome. No offense, just curious.
Good question.
Yes I did prepare myself for the worst and I feel that in order to be ideal candidate for LL, people must consider whether they will be able to cope with the worst case scenario of amputation and whether others will cope in an unfortunate event of death. You may laugh at me but I made a will before I left for SA just to prepare for the worse. Personally, if I did lose my limbs then I would try and find solace knowing that I did try my best to fight the constant heightism I suffered for the past 20 years. I would then try and find happiness while being an amputee and not go straight into taking my own life.
Quote from: TheRisingShorty on December 07, 2014, 02:35:20 PMYes, there are sudden signs of compartment syndrome and embolism
I went through those links, but some aspects of limb lengthening are not particularly addressed.
What I think now is that the "risky" part is during the surgery. After the surgery once you start lengthening, the worst outcomes can be poor recovery and non-union. I was wondering if everyday is a dread whilst lengthening, because nerve damage and contractures can happen even while lengthening as you indicated.
QuoteGood question.
Yes I did prepare myself for the worst and I feel that in order to be ideal candidate for LL, people must consider whether they will be able to cope with the worst case scenario of amputation and whether others will cope in an unfortunate event of death. You may laugh at me but I made a will before I left for SA just to prepare for the worse. Personally, if I did lose my limbs then I would try and find solace knowing that I did try my best to fight the constant heightism I suffered for the past 20 years. I would then try and find happiness while being an amputee and not go straight into taking my own life.
Is there a way to tell the doctor to euthanize you if things one of the worst outcomes happen and you have no control after that.
Do you think someone who has no motivation to live if the worst case of amputation happens is a good LL candidate? if not, why not?
Quote from: SAD on December 07, 2014, 05:22:49 PMI went through those links, but some aspects of limb lengthening are not particularly addressed.
Some of the links only describe and address the condition itself. They are from general medical websites not specialising in LL but provide very helpful information on conditions that can manifest after LL surgery.
Quote from: SAD on December 07, 2014, 05:22:49 PMWhat I think now is that the "risky" part is during the surgery. After the surgery once you start lengthening, the worst outcomes can be poor recovery and non-union. I was wondering if everyday is a dread whilst lengthening, because nerve damage and contractures can happen even while lengthening as you indicated.
Yes the surgery itself is very risky and it is of vital importance to go to a experienced surgeon who specialises in LL. I'd consider the entire LL phase to be risky because the latency period after surgery is when chances of compartment syndrome,embolism and deep infection to be at its peak. The risk of embolism can also present during distraction and that is why some surgeons continue anticoagulant treatment with their patients.
You're right about the risk of nerve damage, contractures, delayed/non-union and poor recovery during distraction phase. Don't forget the risk of device malfunction. And then the chance of refracture and poor recovery during consolidation.
Quote from: SAD on December 07, 2014, 05:22:49 PMIs there a way to tell the doctor to euthanize you if things one of the worst outcomes happen and you have no control after that.
It depends where you reside. It's illegal where I live but maybe possible in your country.
Quote from: SAD on December 07, 2014, 05:22:49 PMDo you think someone who has no motivation to live if the worst case of amputation happens is a good LL candidate? if not, why not?
This is a very difficult question to answer to be honest since the views will be highly subjective. If height is the major cause of suffering and preventing one from living a normal life then that particular person would be a good candidate for LL, regardless whether he has the motivation to live after the worst case of amputation. Instead people should ask themselves whether they have the motivation to live at their current height? Remember that chances of amputation is almost zero with a good surgeon.
How was your mentality whilst lengthening?
Were you scared all the time about such possibilities like you probably were scared just before surgery?
Quote from: SAD on December 07, 2014, 08:20:43 PMHow was your mentality whilst lengthening?
Were you scared all the time about such possibilities like you probably were scared just before surgery?
Pre-op nerves was the worst. The week before LL was very emotional and my flight to SA was possibly the worst flight ever because of the constant thought of whether I would make it through LL. After my consultation with Dr.B I looked forward to my surgery and just wanted to get over with it. I was really excited when they took me to the operation theatre the next day. I felt very euphoric and relieved right after surgery. During lengthening I was constantly occupied with the fear of nail failure and failing to reach my target. Other complications like nerve damage was the least of my concern because I paid very close attention to how my legs responded during lengthening. Fortunately I did not have any complications like nerve pain and contractures. The social isolation and the monotonous days during lengthening did have a toll on me but I kept my self busy with physio, cooking, reading study materials, TV, music etc..
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