Limb Lengthening Forum
Limb Lengthening Surgery => Limb Lengthening Patients Experiences => Topic started by: Cooper on July 18, 2015, 10:19:21 PM
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Background: This is my second CLL surgery. I have done bilateral femur with Precise2 nail with Dr. Paley in St. Mary’s hospital, West Palm Beach, Florida June 3rd, 2014. It was 13 and half months ago. I was back to normal. Playing tennis actively in last month or so. Played few sets of single sometime but barely able to run far. I have not gotten back the explosiveness partly the rod inside the femur and it was only a year ago I had surgery. But given the progress I had no doubt I will be back to 100% in six month or year after. Life was normal only taller. I did about 6.5 on right and 6.9 on left to correct the few millimeter discrepancy. I was conservative and only wanted to do 7 on femur and 6 on tibia. I cannot thank enough Dr. Birkholtz for his contribution to this forum and the immense knowledge poured to this forum. Because of his note & comment, I am sticking with conservative amount of lengthening. I would avoid any risk of losing athletic ability. I always remember the Dr. Birkholtz saying what good is the long leg if you cannot use it. I wanted to do this surgery with him but he is far away and internet was not strong. I am working while lengthening. Also, Dr. Rozbruch wanted me to do 6.5/6 femur/tibia during my consultation with him. It was planned for long time!
Dr. Inan: I met Dr. Inan in Istanbul February, 2015. He is very cool doctor. I personally liked him. Was planning to go LON external with him. Plan was stay in Turkey entire time and come back to US after nail removal. He could have been good option for external LON. I met ChrisIssac and Trail Blazer while I was there. Had great time in super cold weather . I have personally met Dr. Rozbruch, Dr. Mahboubian and obviously Dr. Paley and his elite team. Asked me if you any questions regarding any of them.
Why Dr Monegal: I was searching for cheaper internal nail option. I found about Dr. Monegal via forum few months ago. I immediately emailed him with lengthy questions to my surprise he responded promptly. I was impressed. We have about 20/30 email exchange. My short listed doctors were Dr. Birkholtz, Dr. Inan, Dr. Lee and remote possibility with Dr. Salemeh. I finally picked Dr. Monegal because of below reasons:
1. Spain is in heart of Europe.
2. Strong internet connection. Important for me.
3. Saw his video with other doctor on fitbone presentation.
4. Had published and presented LL case in seminars
5. His response to my question were reasonable
6. Other LL patients in hospital and at St. Jordi. You do not want to do this journey alone.
7. Cost
On side note: I had four hours transit in Toronto. I was in train to downtown to pass the layover time and have a lunch. I decided to call a guy who did the femur with me last year. Within 45 minutes we were hanging out together in downtown. Can you believe that? He was super happy to receive me. Only complain why did not I notify earlier or come a day before blah….blah….blah. We only had an hour but we talked every freaking second of it. I meant it. So much to catchup. It was short but memorable one!
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July 12th: Arrived at Barcelona took a cab from Airport to St. Jordi and the fare was about 31 Euro. Very hot and humid. First time here so looking out to distance to glance bits and pieces of city from the back seat. I crashed first few hours and took a shower. Checked my email and Dr. Monegal emailed me patient info who had stayed in at St. Jordi. We met and talked about an hour. It was about 6PM and I was very hungry. We had a great starting conversation we were engaging decent LL conversation but I had to leave for food. He did bilateral femur and so far looked great. Walking fine, muscle flexion and extension looked good. I reviewed the x-ray and looked phenomenal. It was encouraging for me. I then met another patient who is doing cross lengthening with fitbone. He is from South of Spain and I could not communicate to him. But seems very happy with the process and was smiling and happy. I can tell what it feels getting taller and realizing the DREAM!
July 13th: Met Dr. Monegal in Barcelona Hospital not Diagonal Clinic. He looked much younger than I thought. Kind of reminded me of Dr. Mahboubian. He was supervising surgery that day at the hospital and lot of doctors were popping in and asking him questions in Spanish. He checked my flexibility and we are set for next day. We talked briefly about 15 minutes. He went over the process which I kind of knew already. Shook hands and parted our ways. Then I took a train to down town. Hop in tourist bus both red line and blue. Total of 3.5hours. I was looking but barely looking. Mind was all focus on big day, concerned about the surgery and did not enjoy much as one should have. I liked what I see though. Had big appetizer, steak dinner and desert and three glasses of wine. More than I normally eat. I have late schedule surgery and wanted to make sure I ate enough or more to fight it next day.
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July 14th: THE BIG DAY!!!!!!!
I took a cab from St. Jordi and I think I paid about 25 Euro. I was asked to come at Clinica Diagonal at 9 to meet Peppe. I never met the guy instead I was helped by Mariano (lady communicator). Most staff speaks very little English. In order to have decent conversation you will need translator. But Dr. Monegal speaks fine English. Hospital looked great. No less than what I have seen & heard in this forum and comparable to western standard. Did the blood work, EKG and x-ray of my right tibia. The surgery was scheduled at 3PM. It was kind of late for me. I had not have any food or drink from the night before. I was getting hungry around 1PM. I told Mariano half-jokingly I might fall down and if I do put me on stretcher and take me to surgery room. I am not turning back . I have so much time to kill. I met three other patients in the hospital.
#1: Paco1 doing second tibia surgery. Man, I loved his family. We had exchanged PM he knew I was coming in town for surgery. What a family he has. Seriously I have not seen anyone that happy before in my life. Mom and dad was talking me in Spanish knowing I would not comprehend. They want to tell me so much and poor Paco would translate word or two for me. My spirit was high up seeing such an enthusiastic and positive energy in the room.
#2: I met another male patient from Barcelona doing second femur. He was very happy with procedure so far. Muscle flex were great and we talked for 30 minutes or so. We exchanged email and promised to meet after I leave hospital for drink and hang out. See how that goes. He left the hospital next day.
#3: Then I finally met our beloved musicmaker. She is a trooper and smiling most time. She and I had exchanged PM in forum and expecting me. I have utter respect for female doing CLL. I met a few in Florida last year and till date we communicate every now and then. Promise to meet someday and have a few glasses of wine perhaps few bottles!!! We partied almost every day in West Palm Beach. It was like college life. We had blast and I really meant blast. I spent about 80 days and it was best part of me. I will never forget and meet some good people.
I met Dr. Monegal and his team right around 3PM. A young nurse saved my leg and they put me in IV and I was ready to go. This is it. I told Dr. Monegal I AM ALL YOURS NOW and he smiled. I was bit nervous and thought no way going back now. My life will change forever. I have same school of thought when I did femur with Dr. Paley last year. I was very nervous right before anesthesia process both time. It was last awakening breathe before I voluntary break my nice looking bone in exchange for couple inches gain. I knew in my heart I have to do this. Otherwise it will hunt me as long as I live. I was thinking about tibia and searching for the doctor since January of this year.
Around 3:30 they took me to OR. The OR looked very modern like any hospital in US. Then I do not remember anything. Passed out and in deep sleep. I wake up around 9 I think. It was late not sure why that late. I have to ask Dr. Monegal regarding that. Least concern so have not followed up on that.
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First Night: I was brought to my room. I immediately ask nurse to bring my laptop bag. I got few things to get done --work related stuff. I worked for an hour or two. To remind you I worked 8 hours on my day of femur surgery and was hoping to repeat same here. However, I felt sleep after few hours. I wake up and asked for food. The nurse did not allow me. She insisted I cannot eat before 2AM which was hour away. I think it was the protocol. Back in St. Mary’s hospital I was given food as soon as I get to my room and I ate but throw up right away. So it did make sense to me.
I was in pain around 3AM. Sensational burning pain never had it before, not even when I broke two femur bone same time last year. I was vehemently worried and paranoid. What’s going on, was there any mistake, something wrong, irreversible mistake of any kind? Dang, I was so worried. Being alone, first time in the country and barely speak the language. It was toughest moment!!!!!!!!!!!!!!!!!!!!!!!!!
I called the nurse and they may have not fully understand the magnitude of the pain. I specially told them I have done this sort of surgery before and pain is not manageable and tolerable. And I am not a CHILD. If I say I am in pain than I meant it. All hale broke loose that night. I was different person and I might have cursed out. Which is not normal. I was in severe pain from 3-7AM. The nurse tried the tramadol with me but did not buzz. I felt my body is rejecting the narcotic for some reason. The pain killer have zero impact. I felt miserable, devastated and very lonely!!!! To add insult to injury they had forgotten to put catheter at surgery table. They put it on my bed while I am coping pain. It was five minute process but my god the timing. It was like Murphy law!
Finally Dr. Monegal showed up around 7-7:30. I have emailed him I was in severe pain most of the second part of the night and called him around 7AM. Did not want to wake him up early. He picked up the phone and came to hospital right away. He was shocked to see my pain level. He told me he has never experience anyone at that pain level before. Paco1 did the same surgery few days ago second one and he perform exactly same and he is doing just fine. I must be the unlucky patient. Why me????????????
May be almighty was sending me message that one segment lengthening was enough. This was not necessary. Dr. Monegal immediately asked me if I feel pressure on my left and my answer was BIG FAT YES. I had bandage from my femur to ankle wrapped around from the surgery. He cut the bandage out. AND THAT WAS IT. THE PAIN WENT AWAY JUST LIKE THAT. The pain starts subdued in no time. Less than 2 minutes the pain level dropped to manageable. WAS IN BIG RELIEF. I began to feel much better. My muscle has swollen so much the tight bandage was pressurizing and generating sensational burning pain. I wish nurse knew this and helped me. Preventable pain but no one knew except the doctor. Such an unfortunate event.
I have read many diaries especially from India/Russia/China where patient goes through 10/10 pain. I never understood until this moment. The bright side is I get to experience firsthand.
After the bandage removal my experience has been very smooth ride so far. Dr. Monegal told me everything went PERFECT and I believed him. I reviewed the x-ray and looks great. The issue was not with the surgery technique but pain management and a simple issue of bandage removal. Obviously it’s been only 5 days. Time will tell more and promise to update. 4 golden days and 1 very bad one!
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Day 2: Dr. Monegal texted me with couple good news. He talked Precise representative and told me he can extract the nail. He had mentioned before coming into surgery that he will not charge anything but I have to pay the rental fee for the extraction tools. He was very worried about me. He was calling and texting me to make sure I have no more pain. Directed me to call him directly if needed. I was moved by his caring spirit. It meant lot to me. He is the sole reason I am here and I think he understood that very well. I did not tell him that. He said and I like to quote, “I will do anything for my patient.” He really meant it and I have not seen any slight indication not to believe that. He visits me every day. Mostly twice a day in the morning around 9 and after 5/6pm.
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Day 3: Everything was normal pain level 0. I was working each day few hours. Then I would watch TV, check out social media etc. I was feeling good. Pain level 0 or 1. Two times therapy in hospital. Food is great and nurses are attentive. But may be language barrier issue but few of them speaks at communicative level. Walked few steps on crutches with physio help. Slept well at night without pain.
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Day 4: Catheter and epidural out. Game changer and starting to feel getting back on life. Pain level 0. Took good long shower, comb hair put nice perfume and head back to bed. I changed hospital gown and put on own cloth. That gave me the impression or feeling that I am back and I am starting to take control and independent. A big psychological boost. Start flirting with nurses, a typical me . Took a long walk about 100 feet on crutches on my own. A small milestone. Worked little bit. Had a nice dinner and watched old movie in youtube. Slept about 2 hours during the night but had 4/5 hours sleep during the day.
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Day 5: Feeling much better each passing day or even hour. Pain level 0. Took shower, worked little bit, surf internet. Today is Saturday and only one physio session. Took a long walk about 300 feet. Feet is swore and stiff today. Dr. Monegal came in the morning, he left early to buy a car and promised to come back and show his new ride. He is pretty laid back. Comes and lays on my sofa bed. Makes me feel very comfortable. He is very caring and upfront and serious about patient well-being. Two guys same age. We started to converse like buddies now. One breaks the leg and other one accepts it and calls him a friend. What a world we live in :D. He took me to parking lot and show me his new baby. We are now beginning to interest on personal stuff and sharing a lot of life experience. We have plans to hang out when I get strong and back to St. Jordi. I have requested vitamin D and he brought me two bottles today for 2 month supply. So far so good. My leg has swollen quite a bit but significant improve lately. Very happy with the progress so far. Live from Spain, Arios and see you minanya!
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http://www.turboimagehost.com/p/23613298/Lental_Soup_Steak_with_Potato_and_Carrot.jpg.html
http://www.turboimagehost.com/p/23613299/Omellete_and_Salad_with_Salmon.jpg.html
http://www.turboimagehost.com/p/23613296/My_nice_looking_leg_but_broken_and_bloated.jpg.html
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http://www.turboimagehost.com/p/23613297/Hospital_Bed.jpg.html
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Cooper, glad to hear you are doing ok. Just the right leg? Or is it both? Working on your Spanish?
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http://www.turboimagehost.com/p/23613324/Scenic_View_from_Hospital_Balcony.jpg.html
http://www.turboimagehost.com/p/23613332/Scenic_View_from_Hospital_Balcony1.jpg.html
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Cooper, glad to hear you are doing ok. Just the right leg? Or is it both? Working on your Spanish?
You are 100% correct! Picking few new words but tend to forget right away. Hope to retain few for little longer ;D
How is your son doing? Make sure stretch enough. I did three times a day for femur.
I am also taking Slical1, Silical 2, Silical Boost along with Vitamin D. All to prep for good bone generation.
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yes just the right leg and happy I only pick one. Do not have strength to go full swing war with both leg at same time. I began to appreciate myself for making wise decision. Much better mobility and planning to work, setup conference & meeting and travel near by when I get back to US.
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He is doing fine, thanks. What stretches did you do? I am helping him stretch, but don't know if we are doing correct stretches. I am not familiar with all the LL surgeries; you are doing internal tibias?
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Femur has more muscle than tibia. The important ones if I can remember correctly with my failing memory are: hamstring, quad, hip abductor, IT band for stretching. I have the file at home but I am far away now.
There are couples ones for strengthening as well. You have to do both and massage the muscle with some cream that helps out. I used to immerse myself in tub with hot water and Epsom salt. That soothe muscle big time.
Yes interal tibia.
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Thank you for your answers. Hope you are resting and doing well.
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Wow, Cooper, what an amazing diary so far! I am glued to my monitor reading every line. Hope you have a speedy recovery.
I am having my surgery with Dr. Monegal on August 25, do you mind if I PM you some questions about the process?
Thanks again for doing this diary, it really helps those of us that are coming to Barcelona to prepare.
Glenn
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Glenn- absolutely feel free PM or post on this thread. This diary is for posterity and like to answer any curiosity you may have.
Day 6: slept about 4 hours. The long walk kinda give me stiffness but no pain. Make sleep bit harder. I have not taken pain medicine since yesterday. The nurse here keeps askin me but I told not to. No reason to inject narco into my body. If I have pain glad to take one.
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Morning diet: café collate, round croissant (has a different name in Spanish), pine juice and supplementary vitamins.
http://www.turboimagehost.com/p/23614739/Morning_Diet.jpg.html
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Hello Cooper,
Firstly, thankyou for such a detailed and informative diary. i have a few questions for you, if you could please answer them.
1) cost of surgury
2) where are you staying at for duration of surgury and its cost.
3) how long after your first surgury will you have your second surgury.
Thank you :)
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hey cooper,
hope your doing fine. since you encouraged participating, two questions for you ;)
1) how long are you staying in barcelona? will you eventually move to MIC?
2) I'm planning to do a two-stage procedure in octobre (femurs). do you think it's possible to return to a somehow normal life (office job) while lengthening?
take care
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Physio Vector with extending smile. He is awesome. We talked lot about other stuff such as culture, life style in Barcelona and game of thrones. There are other two physio Ricardo and Edgar. Both of them equally good and competent.
http://www.turboimagehost.com/p/23617104/Physio_Vector_With_Extended_Smile.jpg.html
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Food is really amazing at the hospital. Almost resonate eating at the fine restaurant. I am going to miss the food. Today's lunch:
http://www.turboimagehost.com/p/23617137/Fish_With_Spinach_and_Pasta_for_Lunch.jpg.html
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Hello Cooper,
Firstly, thankyou for such a detailed and informative diary. i have a few questions for you, if you could please answer them.
1) cost of surgury
2) where are you staying at for duration of surgury and its cost.
3) how long after your first surgury will you have your second surgury.
Thank you :)
Hey TrueSpartan- thanks for dropping by. I was like you guys few years ago suk all the diaries on the both forum. Hoping to achieve dream some day. I can totally relate to you folks. So feel free ask me anything.
Cost break down:
1. Wire to Hospital: 14,600 Euro
2. Medical Fee:
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Sorry post way early.
Cost:
Hospital Fee: 14,600 Euro
Medical Fee: 4,000 Euro
Lodging: 1280-1400 Euro depending upon room.
I will be only staying for 3 weeks. One week at Clinica Diagonal and two weeks at St. Jordi.
I am shooting for second tibia around mid October.
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hey cooper,
hope your doing fine. since you encouraged participating, two questions for you ;)
1) how long are you staying in barcelona? will you eventually move to MIC?
2) I'm planning to do a two-stage procedure in octobre (femurs). do you think it's possible to return to a somehow normal life (office job) while lengthening?
take care
I will probably leave to MIC (St. Jordi) tomorrow. I will be there for two weeks and back home.
I think you can definitely return to work office confine environment. I am planning on working right after I get back home. I am also working from hospital bed. I had few conferences yesterday and day before. What can I say-- I am an workaholic guy.
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Wow this is amazing, your second LL journey! It is hard to believe that more than a year ago, we were planning about our first LL surgery and discussing how the surgery would go. Time goes by really fast :o You're a trooper for undergoing another LL surgery, something that I cannot imagine doing again.
Anyway, all the best and stay strong buddy.
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Hi Cooper,
Thank you for your help. I am trying to figure out a way to move money into Spain to pay for everything. But it sounds like it was very easy for you. Maybe I am over-thinking it? Can you clarify some things on what steps you did to physically pay, please:
1. Hospital Fee. Did you just wire the money directly from your home country? How long did it take? How does the hospital match up your patient ID with the transaction history?
2. Medical Fee. Did you just bring this in cash? Or can it be wired into another account as well?
3. Lodging. Am I correct to guess you will just swipe your credit card for that?
Also, another question that I am trying to ask any foreigner that has been to Spain. How difficult is it for a foreign tourist to walk into a bank and open a bank account? Anything special required?
Hope your transfer to MIC St. Jordi goes smoothly today, all the best!
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Wow this is amazing, your second LL journey! It is hard to believe that more than a year ago, we were planning about our first LL surgery and discussing how the surgery would go. Time goes by really fast :o You're a trooper for undergoing another LL surgery, something that I cannot imagine doing again.
Anyway, all the best and stay strong buddy.
I know TRS. We were so excited last year planning and getting this journey together in South Africa. I remember talking with you many times. Some of the Skype were wee hours of the morning. We both achieved our dream! I am really happy at least we were at least able to support each other during this tough time.
I had to do this and was kind of bothering me. I had to get this out of my way and move on to my life. Here I am with broken leg again but very happy indeed ;D ;D ;D
So far things are moving along very fine and hope it stays the same in coming days.
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Hi Cooper,
Thank you for your help. I am trying to figure out a way to move money into Spain to pay for everything. But it sounds like it was very easy for you. Maybe I am over-thinking it? Can you clarify some things on what steps you did to physically pay, please:
1. Hospital Fee. Did you just wire the money directly from your home country? How long did it take? How does the hospital match up your patient ID with the transaction history?
2. Medical Fee. Did you just bring this in cash? Or can it be wired into another account as well?
3. Lodging. Am I correct to guess you will just swipe your credit card for that?
Also, another question that I am trying to ask any foreigner that has been to Spain. How difficult is it for a foreign tourist to walk into a bank and open a bank account? Anything special required?
Hope your transfer to MIC St. Jordi goes smoothly today, all the best!
Brother Glen- it is much easier. You are overly thinking about this and I can understand. I wired the money to hospital. Brought cash to pay for the doctor and pay for lodging. I also brought credit card in case I ran out of cash. My credit card company does not charge foreign currency exchange rate or usage fee. Make sure you have a card that will allow to use in foreign country without a fee if you are planning to use CC.
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Hey cooper i sent you a pm
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Hey cooper i sent you a pm
Just respond to your PM. If you have more questions please ask.
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Cooper, once the bandages come off, could you share pictures of your scars. I am interested to see what the scars look like.
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Cooper, once the bandages come off, could you share pictures of your scars. I am interested to see what the scars look like.
certainly my friend. Your wish is my command...lol
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Ok now I am starting to get really tempted and just suck it up and do tibias as much as I really don't want to...I just want like 4cm more...I honestly think I'd be happy at that point. Someday I will do tibias.
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Ok now I am starting to get really tempted and just suck it up and do tibias as much as I really don't want to...I just want like 4cm more...I honestly think I'd be happy at that point. Someday I will do tibias.
Oh shoot. Please do not get the wrong idea. I had tibia in mind ever since I decided to do LL. Few folks at WPM talked me down not to do it. I looked great blah...blah...blah. I was not even 5, 6" with first surgery. I had to do it.
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Oh shoot. Please do not get the wrong idea. I had tibia in mind ever since I decided to do LL. Few folks at WPM talked me down not to do it. I looked great blah...blah...blah. I was not even 5, 6" with first surgery. I had to do it.
Haha no not at all! I'm just more thinking that if some people can do LL twice, why not me? I'm now about 5'8"/173ish, and it's good, but I'd like another inch and a half more. I just want to be average and more in the "safe" zone. Dr. Inan and Monegal are both on my list for tibias.
How long is the time frame if I do 4cm with LON? I want this sh*t done as fast as possible.
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If you do LON. I think you will walk back in 2 months. usually for 6cm I have seen 3 months. I checked with few patient of Dr. Lee and the patient who did 6cm are walking in 3 months but somewhat limping.
You did femur with Dr. R, correct?
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If you do LON. I think you will walk back in 2 months. usually for 6cm I have seen 3 months. I checked with few patient of Dr. Lee and the patient who did 6cm are walking in 3 months but somewhat limping.
You did femur with Dr. R, correct?
I did 7cm on femurs with Dr Guichet. I was thinking of doing another 2.5cm on my femurs but I'm terrified the proportions will look awful at that point. So I've got to suck it up and somehow find 3 months to do LON within the next 2-3 years. The main issue for me is managing my career as I do this. Just want 4cm more.
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Cooper, does the rod stay inside after you are all done or does it come out? How would you compare this method with the Precice 2 method? Yes, the hospital food looks good, lol.
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How much does Dr Monegal charge for LON? Also, could you please ask him his opinion on LON vs LATN vs LATP (lengthening and then plating) for 5 cm and a timeline of three months to remove frames?
Fantastic diary, I hope to soon have my tibias done and one day have my femurs as well. Great photos, and I know you'll do great!
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Hi Cooper
Congrats on your another LL journey! You are the real LL hero. It is not just because you have done two LL surgeries, but because you are willing to share your story and happy to help other members here perhaps outside as well. After two surgeries, you will be definitely different and live in a very different life. I am very happy for you!! I really wish I could have done LL but had no chance so far. But I will do it someday when the time is right.
I just have one question for you. Since you have done a quite successful LL on femurs with Dr. Paley using Precise, why didn't you do tibia with him? Is that mainly because of the better price with Dr. Monegal? I also kind of see he is a Dr. who really cares about his patients. But, I probably can't do ll with him because of limited time.
Anyway, any kind of your thought will be highly appreciated!
Wish you the best of LL journey!
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Cooper, does the rod stay inside after you are all done or does it come out? How would you compare this method with the Precice 2 method? Yes, the hospital food looks good, lol.
It stays in for a year or two. Like precise the nail has to come out at some point but timing does not matter. It can be done via out patient surgery. The magnetic device of precise is bulky and one have to push harder to get to close proximity of precise rod.
The fitbone has small censor and goes on top of the skin. Both device is effective and precise --not ratcheting system, that is the best part! But fitbone has small wire comes through skin. Both are top notch and world class.
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How much does Dr Monegal charge for LON? Also, could you please ask him his opinion on LON vs LATN vs LATP (lengthening and then plating) for 5 cm and a timeline of three months to remove frames?
Fantastic diary, I hope to soon have my tibias done and one day have my femurs as well. Great photos, and I know you'll do great!
Arche- how you doing bro? I think it is about 19k euro. The price may be on his thread. I will check with him LATN vs LTAP.
I think 3 months time frame is doable for 5 cm.
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I just have one question for you. Since you have done a quite successful LL on femurs with Dr. Paley using Precise, why didn't you do tibia with him? Is that mainly because of the better price with Dr. Monegal? I also kind of see he is a Dr. who really cares about his patients. But, I probably can't do ll with him because of limited time.
Anyway, any kind of your thought will be highly appreciated!
Wish you the best of LL journey!
Ghostfish- thanks for your wishes. I will need lot of them :). I did not go to dr. Paley solely for the price. I thought about going back but didnot feel right to spend another $100k.
Plus dr. Monegal was everything I was looking for. Fine hospital in advance country, internal option and experience and caring doctor.
Dr. Paley is the most busiest surgeon I have seen in my life. When he came to my room he was flanked with 10/12 other people. He is celebrity doctor in my words. But you are in great hands of experts. All the complication is treatable and you will have safe lengthening. Cannot say the same for other doctor except dr. Rozbruch in my opinion. I am inquiring a lot regarding Dr. Monegal his experience in dealing complication.
But as far as caring dr. Monegal is in top chart. He comes close to dr. Jamal as far as caring and checking well being of the patient. I am still early to convincingly vouch my opinion. But what I have seen here I am impressed and very happy.
My flexion is 90 and extension is 0. Very happy with the result so far. Calve muscle is relatively tight but swollen has come down quite a bit.
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Day 6: have a good 5 hour sleep night. No pain just some stiffness in calves muscle. I did light stretching in bed in the morning. Asked nurse to bring ice. I am icing as I am writing this note.
Had a break fast and now waiting for my good physio. I might leave to MIC today. Really want to get out form here. I can stay couple more days if I request at no cost. But rather be with other LL friends at MIC.
I went outside the hospital porch first time yesterday evening. It felt good to be outside and breathe in open air.
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Hey cooper as you've been on the forum for ages I'm sure your aware of all the studies relating internal tibial nailing and permanent knee pain what made you decide to go with this option?
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Didn't Dr. Monegal say something about a different way of cutting the bone below patella?
I don't want to quote him wrong but he was pretty confident that the knee pain is avoidable this way and that his patients don't suffer from this. At least that's what I remember him saying.
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Another favor to ask of you Cooper: once you are at MIC, please let us know how reliable and speedy the internet connecion is (especially with VPN).
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Thank you for your reply Cooper. You are right. I am absorbing all the information I am finding here. Reading/re reading and hopefully I plan to undergo this in 2 years; right after my graduation. I have started saving for it from now. Doctor Monegal seems promising in terms of results however i fear the timeline with Dr. Monegal may be too long to keep this surgery secret. Family/friends will start wondering what you are doing and such. I wonder if it would be possible to do one leg LON and other Fitbone. Anyhow, thanks cooper for keeping us filled with all this valuable information.
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Why do not consider Dr. Guichet .
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What a well written diary Cooper, good luck.
Aren't you worried about lengthening both segments though, I imagine it'll be harder on your recovery and how will you look afterwards?
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Hi Cooper,
Thank you for answering all our questions, including mine. Hope you will enjoy your stay at MSJ. I will be seeing Dr. Monegal next month, such a shame we won't be able to meet.
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Thank you musicmaker.
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Hey cooper as you've been on the forum for ages I'm sure your aware of all the studies relating internal tibial nailing and permanent knee pain what made you decide to go with this option?
Not all patient with tibia has knee issues. All of the dr. paley patient are fine. Trailblazer with dr. Inan has no complain on knee pain. It really depends on doctor. Most patients complaining are of dr. Sarin and dr. Srinagri in India. Based on my knowledge either of the doctor are NOT limb lengthening specialist. Orthopedic doctor generally are not suited well for CLL IMO. Pick a doctor who specialize in LL.
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Didn't Dr. Monegal say something about a different way of cutting the bone below patella?
I don't want to quote him wrong but he was pretty confident that the knee pain is avoidable this way and that his patients don't suffer from this. At least that's what I remember him saying.
He uses super patellar approach which completely avoids tendon. The insertion is done few cm top of knee. It is amazing!
My flexibility is superb and zero knee pain. I heard his say dr. Baumgart was impressed with this technique and now they want to standardize this technique for tibia lengthening. I recommended dr. monegal to present a case in seminars so other LL doctors can use this method.
Knee pain is tough. I have ACL done few years ago and finally I am forgetting the knee pain from that surgery.
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Hi Cooper,
Thank you for answering all our questions, including mine. Hope you will enjoy your stay at MSJ. I will be seeing Dr. Monegal next month, such a shame we won't be able to meet.
You are welcome Glenn. I also wanted to tell you that you can bring AMEX traveler checks. It is much safer than brining cash. If you do make sure you jot down the check number some safer place. They will reissue new check if checks are lost. Not sure about the stolen check but there should be some recourse.
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Thank you for your reply Cooper. You are right. I am absorbing all the information I am finding here. Reading/re reading and hopefully I plan to undergo this in 2 years; right after my graduation. I have started saving for it from now. Doctor Monegal seems promising in terms of results however i fear the timeline with Dr. Monegal may be too long to keep this surgery secret. Family/friends will start wondering what you are doing and such. I wonder if it would be possible to do one leg LON and other Fitbone. Anyhow, thanks cooper for keeping us filled with all this valuable information.
I recommend doing internal if possible. But if the budget issue than LON will be fine. The hardest part of this surgery is keeping secret and not telling anyone. I need to make up story when I get home so folks does not flip out when they see me in crutches. In addition, I need to come back here 3 months and do another leg. I am looking for compelling story so I can shut everyone with one story. If you guys have any idea please pitch in.
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Another favor to ask of you Cooper: once you are at MIC, please let us know how reliable and speedy the internet connecion is (especially with VPN).
The internet is pretty strong and I concur with musicmaker. I am working from MIC with VPN connection as well. If I cannot do VPN than won't be able to survive :P.
I worked few hours this morning already via VPN so no worries.
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Why do not consider Dr. Guichet .
I exchanged lot of emails with Dr. Guichet prior going to dr. Paley. He is very focused and result oriented doctor. I really like him and his patients are doing phenomenal recovery.
But, his physical therapy regiment worries me a lot. Leechlet mentioned that he had to sit on stationary bicycle for 20 minutes on second day. That is too much when your body is going through so much trauma. Eventually he stopped going to therapy. On a bright side his patients are doing very well. He can be good choice but not for me.
I also do not like the clicking mechanism for distraction. I am already on some kind of pain and stifneess. If I have to click for distraction it sure will add more frustration.
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July 20th: I was discharged from hospital. Dr. Monegal texted me if I need ride to MIC. He has surgery schedule at nearby Barcelona hospital. I respectfully accepted it.
Came to MIC. There are three other patients. Musicmaker, a male from US and teenager male from Spain. I talked to all of them and feel good. We have so much in common. The best part is we can talk everything about height, pain, fake stories we are telling to our friends and family to be here. It is awesome!!! Telling you guys having community while doing this process helps a lot. If I were all alone I will have gone loco (crazy) by now.
I slept about few hours and then went to Italian restaurant across from MIC. I was so happy to be outside hospital and wanted to give myself a treat. I had nice steak and few beers and had a good night sleep. I slept about 8 hours FIRST TIME after the surgery. Few stiffness and had to change the position but it was mostly interrupted. However, I had to go bathroom four or five times. The beer and water belly up my bladder pretty well :o
I also give a list of item to buy from supermarket. I have some snacks, milk, fruits in refrigerator. Also asked them to fill the prescription for me. Everything taking care of!
I will do my FIRST DISTRACTION today. Dr. Monegal will drop by later and we are planning on doing together.
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I exchanged lot of emails with Dr. Guichet prior going to dr. Paley. He is very focused and result oriented doctor. I really like him and his patients are doing phenomenal recovery.
But, his physical therapy regiment worries me a lot. Leechlet mentioned that he had to sit on stationary bicycle for 20 minutes on second day. That is too much when your body is going through so much trauma. Eventually he stopped going to therapy. On a bright side his patients are doing very well. He can be good choice but not for me.
I also do not like the clicking mechanism for distraction. I am already on some kind of pain and stifneess. If I have to click for distraction it sure will add more frustration.
Please don't look at Leechlet as an example. He was a terrible patient. Guichet had me on the bike literally as I was waking up from the surgery. The first thing I remember when I came to, I was on the bike, and Guichet was yelling "Get him a coke, he neegs sugar!" Guichet is definitely tough, but that's actually one of the reasons I chose him. I wanted a drill sargeant as my doctor to keep me in line. He's also very conservative, and had me stop at 7cm when I actually wanted a bit more.
Clicking does blow (especially towards the end, it gets ultra painful!), but at least clicking guarantees that you're actually lengthening. I think Precice and Fitbone are great, but I think they sometimes don't always give you what you're lengthening due to muscles (especially for muscular guys) providing a ton of resistance. I've only heard of a few instances of this, but it does seem to happen.
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Please don't look at Leechlet as an example. He was a terrible patient. Guichet had me on the bike literally as I was waking up from the surgery. The first thing I remember when I came to, I was on the bike, and Guichet was yelling "Get him a coke, he neegs sugar!" Guichet is definitely tough, but that's actually one of the reasons I chose him. I wanted a drill sargeant as my doctor to keep me in line. He's also very conservative, and had me stop at 7cm when I actually wanted a bit more.
Clicking does blow (especially towards the end, it gets ultra painful!), but at least clicking guarantees that you're actually lengthening. I think Precice and Fitbone are great, but I think they sometimes don't always give you what you're lengthening due to muscles (especially for muscular guys) providing a ton of resistance. I've only heard of a few instances of this, but it does seem to happen.
I agree dr. Guichet is top LL surgeon. No doubt. Patients are doing remarkably well with him. He is been in the industry for long time.
I am not fan of clicking and see lot of patients of dr. Betz struggling with clicking. Read some of the patient even had to go anesthetic clicking. I waited for precise2 to come out so I can have painless distraction. It's a choice I made. I still prefer non clicking mechanism for distraction. It is just the matter of preference. We can agree to disagree ;D
You are also correct either precise or fitbone may not able to distract due to muscle tightness. These devices can only withhold some level of resistence and can give up after 6.5/7cm. My left leg did not distract after 6.5cm. I wanted to go 7cm but we did not push it. I could have tried and may have worded out but again I accepted what I gained. Another patient wanted to go 8cm but did not buzz after 7cm.
Just to reiterate I have nothing but highest respect to dr. Guichet. We need more conservative doctor like him :).
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Here is the x-ray taken in second day. The nail and screw looks solid. Dr. Monegal also fixated tibia/fibula in angular like dr. Paley or dr. Rozbruch.
http://www.turboimagehost.com/p/23633217/X-Ray_Post_Op_Second_Day.jpg.html
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I recommend doing internal if possible. But if the budget issue than LON will be fine. The hardest part of this surgery is keeping secret and not telling anyone. I need to make up story when I get home so folks does not flip out when they see me in crutches. In addition, I need to come back here 3 months and do another leg. I am looking for compelling story so I can shut everyone with one story. If you guys have any idea please pitch in.
Hi Cooper, regarding your Topic about what to tell your friends etc I wanted to share my thoughts and recent experience.
I hesitated to do LL for a long time also because I was afraid to tell anyone, friends, parents,...
I almost didnt do it for that reason.
Now that I have the Situation is much different than I thought. I decided not to tell anyone before but be honest afterwards. So I told my Friends that I had this big Dream for a Long Time, Wartung to be taller, and that I now fuLL Forumill this dream and that I am very happy about it.
People are confused at First but get used to it very quickly, ask questions about LL and offer their help if needed.
10 out of 10 positive reactions. I think its Important to be honest first with yourself and then with the people who matter around you. Who cares what others think or talk als long als you have your Important friends and family behind you.
I hated to lie for so many months and it feels Great not to have the need now. I Talk about LL with everbody as if it would be a normal knee surgery or something like that. Its just the news that shocks People not the surgery or the LL itself I feel.
So my idea would be not to lie at all. Its easier than you might think or feel at the Moment...
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Hey cooper I am curious to know what Dr Monegal thinks of your femur lengthening with Paley. There were a few topics on the forum a couple of months ago talking about how internal femur by lengthening along the anatomical axis caused malalignment. Dr Monegal then wrote that his reverse planning method avoiding this malalignment particularly when using fitbone.
I assume that the device isn't important and that the reverse planning of femurs could have been done with Precise.
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Hi Aturro- thanks for some food for thoughts. My friends and family are very close tight and some of them not open minded. I particularly not worried what other think. I might tell the the exact truth as you suggested. Having that discussion is so personal I have not told my siblings either. The difficult part is opening the dialogue.
I think this time there will not be any easy escape. All of sudden I am much teller again. On the first one I told them I was hitting gym and lost lot of weights. Some of them were raising eyebrows when the see first time after the surgery.
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Hey cooper I am curious to know what Dr Monegal thinks of your femur lengthening with Paley. There were a few topics on the forum a couple of months ago talking about how internal femur by lengthening along the anatomical axis caused malalignment. Dr Monegal then wrote that his reverse planning method avoiding this malalignment particularly when using fitbone.
I assume that the device isn't important and that the reverse planning of femurs could have been done with Precise.
I will check with him and get back to you.
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Day 8:
I had little trouble sleeping last night. Wake up at 3am with stiffness and took paracetamol and that put me sleep till 7:30. Doctor prescribed me 3 pain level medicine: 1) Tramadol (strongest) 2) Nolotil (second strongest) 3) Paracetamol (mild).
First PT Session:
I had PT session at 8am. All the good schedule were taken so I took only available slot at 8am. Claudio (Physical Therapist) came to my room and we took elevator to little gym. This was the first time I really had a nice stretch after the surgery. My god I felt AWESOME! It was huge turning point 8)
He joked he got magic hands and I said you have million dollar hands :). He is really good and I really like him. PT is the single most important stuff after the surgery. In West Palm Beach, they used to say anyone can do the surgery but post care is what makes difference. That is physical therapy, complication, pain management and care.
I came to my room felt really good. I took Nolotil and slept till 12PM. Took a nice shower and ready to start my day. Overall feeling better today. I think Claudio made my day ;D
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Sounds great! What did he do, just stretching? I like my PT too, releases the tension...
And I agree people in General are not open minded but who can blame you for living your dream?! No one should...
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Sounds great! What did he do, just stretching? I like my PT too, releases the tension...
And I agree people in General are not open minded but who can blame you for living your dream?! No one should...
Mostly stretching lower muscle and releasing tension. I have not really stretch this level before.
Overall I felt good yesterday. Doctor got me heating pad and am using every now and then. Claudio wants ice over heat pad but me personally prefer heating pad. I asked them ice here but did nit get any. I didn't bother again.
The hot shower really helps as well. When I ma stiff or discomfort I took nice long shower. Yesterday I had three. Feel great each time. One thing I am missing is bath tub. I used to stay in bath tub with hot water and Epsom salt for long time. It defiantly alleviates stiffness. I learned that from Dr. Betz patient.
Overall going well so far. I should hit 8mm end of the day.
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Hey cooper I am curious to know what Dr Monegal thinks of your femur lengthening with Paley. There were a few topics on the forum a couple of months ago talking about how internal femur by lengthening along the anatomical axis caused malalignment. Dr Monegal then wrote that his reverse planning method avoiding this malalignment particularly when using fitbone.
I assume that the device isn't important and that the reverse planning of femurs could have been done with Precise.
I forwarded the question to dr. Monegal and he replied with below response:
Lengthening along the anatomical Axis in the femur can cause deviation in valgus due to the shape of the bone.
It has been studied and they concluded That lengthening with an internal Rod along the anatomical Axis of the femur migth cause malalignment by deplacing 1 mm/cm lengthened the MAD (mechanical Axis deviation).
However every single case has to be studied and plannified preoperatively and for a 6cm lengthening the deplacement is very nitchy (6mm).
Antegrade lengthening with internals does not allow Any correction of the mechanical Axis so My recomendation would be:
1- patients with sligth varus in the mechanical axis MAD < 6 mm can do either Antegrade or retrograde procedures
2- patients with previous valgus or with deviations in the mechanical Axis MAD > 6 mm retrograde procedure planned using the reverse planning method.
In your case your Axis post operatively looks perfect. In male patients Axis is likely to be sligth varus (so was yours) and your final result has been excellent in My opinion.
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I forwarded the question to dr. Monegal and he replied with below response:
Lengthening along the anatomical Axis in the femur can cause deviation in valgus due to the shape of the bone.
It has been studied and they concluded That lengthening with an internal Rod along the anatomical Axis of the femur migth cause malalignment by deplacing 1 mm/cm lengthened the MAD (mechanical Axis deviation).
However every single case has to be studied and plannified preoperatively and for a 6cm lengthening the deplacement is very nitchy (6mm).
Antegrade lengthening with internals does not allow Any correction of the mechanical Axis so My recomendation would be:
1- patients with sligth varus in the mechanical axis MAD < 6 mm can do either Antegrade or retrograde procedures
2- patients with previous valgus or with deviations in the mechanical Axis MAD > 6 mm retrograde procedure planned using the reverse planning method.
In your case your Axis post operatively looks perfect. In male patients Axis is likely to be sligth varus (so was yours) and your final result has been excellent in My opinion.
I wonder if this axis malalignment is a big deal or not as there have been many patients who did over 6cm with docs like betz, guichet and paley as I have never read any other docs other that monegal even mention the option of reverse planning. Perhaps it takes years for the result of malalignment to show itself?
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He uses super patellar approach which completely avoids tendon. The insertion is done few cm top of knee. It is amazing!
From what I saw on the photo you posted of your legs and what I understand from your statement above, Dr. monegal drilled through your femur to get to your tibia.
Is this correct?
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femur is a bone
your bone is not drilled or broken
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Hey yellowspike, did Dr. Guichet give you a reason why he demanded you stop at 7cm?
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femur is a bone
your bone is not drilled or broken
Thanks for telling us that the femur is a bone. What a sharp and incisive observation.
Also, if you think you can get limb lengthening without breaking your bones, you might want to reboot and read this entire website again.
Back in the real world, in order to insert the Fitbone nails, the bone (tibia or femur) has to be reamed/drilled for the metal rod to fit into the medullary cavity (which contains the bone marrow).
Cooper is doing his right tibia and he has mentioned that Dr Monegal uses a different approach (suprapatellar), which avoids the patellar tendon by inserting the nail above the knee. If you look closely at the photo he posted of his leg, you'll notice the bandage covering the cut above the knee.
http://s5d2.turboimagehost.com/sp/09f7dd93a167e7a741578aae251271cf/My_nice_looking_leg_but_broken_and_bloated.jpg
But you can't insert a nail in the tibia through a cut above the knee without reaming/drilling through the lower femur. Get it?
That's why I'm asking Cooper to get some clarification from Dr Monegal, so we can all become more knowledgeable about this approach (and what it means in terms of safety and results).
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DINGO,
since you're going to act like a child, I'll treat you like one
I had surgery with monegal, so no need for me to look at Copper's scar and ponder
Yes, the bone has to be reamed.. The femur ,of course, does not have to be reamed when one is doing the tibia... Suprapatellar approach simply means the patellar tendon is not cut, and insertion is through the quadriceps, not the femur. The femur should not be reamed You can actually read about it online
If you actually spent any time reading, you would know why some want to use this approach
I'll tell you why though, since clicking the search button can be very difficult
It's called anterior knee pain
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@crimsontide
I'm not questioning the motives for the technique (avoiding tendon pain later) or Dr Monegal or anything like that. In fact, he's on the top of my list of prospective doctors. That's why I'm so interested in knowing more about his technique.
I'm interested in the technical aspects of his tibia insertion technique because I'm finding it hard to wrap my head around the idea that one can insert the nail above the knee whilst avoiding the lower femur, that's all.
Maybe I'm looking at the wrong bandage in Cooper's photo of his leg (the one closest to the camera in the middle of his leg just above the knee). Maybe the nail was inserted through another cut. That's what I'd like to know.
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no problem
heres a link
ill be honest, i dont really understand it either... my insertion site is sore still. i dont have any anterior knee pain, but the top of my leg, it's sore.. if it doesnt go away, well, its a bit uncomfortable. i think it should go away though
a lot of people complain about anterior knee pain when the nail is inserted through the patellar
http://www.researchgate.net/publication/221809122_Insertion_of_intramedullary_nails_from_the_suprapatellar_pouch_for_proximal_tibial_shaft_fractures._A_technical_note
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Update:
I have taken x-ray 14 days post op. Everything looks good. The distraction is working as expected.
http://www.turboimagehost.com/p/23697941/X-Ray_Post_Op_14_days.png.html
I was in acute muscle pain/stiffness. I was doing 4 turns equivalent to 1.08MM. I reduced to 3 turns (0.8mm) and it's been heaven. No muscle stiffness and pain. I only take pain killer few times a day now. The dose is already reduced to half. Yesterday I took one after PT session and one before to sleep.
My feet is still some what swollen and I feel 50% numb over the top and side. The bruises is 85% gone. Overall very happy with the progress.
I intend to cut down on pain killer completely once I get home. For sleeping aid I will use Benadryl. I am leaving Barcelona tomorrow. Looking forward to getting back home :).
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@Dingo- I have no knee pain. The nail is insert through tip of knee via muscle and completely avoids patella tendon and femur bone.
Everything else is same. Rimming and insertion are done in some fashion as Precise or other internal nail.
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Update:
I arrived home safely. Did not have much issue at the airport. I requested wheel chair assistance and booked economy plus ticket. The extra leg room definitely helps. I had bit issue for first few hours after that no problem. I also slept few hours on the plane.
I needed a transformer to convert 110 to 220v. I thought i could easily find in big stores but not really. I checked in walmart, best buy, staples and sears. Nada, i was frustrated. Walmart sells travel converted that changes from 220 to 110 for travel overseas but not scale up.
I ordered it Amazon.com and pick the next day shipping. It arrived and was able safely lengthen again. I kinda of took 2 days break from distraction.
I feel good at home. Life is almost normal except the crutches. I start driving and even went to movie yesterday. I finished the entire movie in one sitting (no break).
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Hi Cooper!
Glad to hear everything is well with you. Thanks for reminding us about the voltage issue. I didn't even consider that one at all.
Best,
Glenn
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Great news Cooper, your recovery seems to go exceptionally well.
I couldnt do a Long hour flight or a movie.
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Great news Cooper, your recovery seems to go exceptionally well.
I couldnt do a Long hour flight or a movie.
Aturro- tibia is much easier than femur. With femur I was not even able to stay in 15mins for haircut. I had to move position but tibia is definitely easy because it is all lower section of the limb.
It is getting easier every day. I feel good and optimistic each passing day. I do miss other good leg :). I was in meeting for 5 hours today. I had no issue but was little inconvenience in final hours. I did not take pain killer either.
I took nolotil mild pain killer and iced my leg as soon as I got home. So far so good!
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Hi Cooper!
Glad to hear everything is well with you. Thanks for reminding us about the voltage issue. I didn't even consider that one at all.
Best,
Glenn
I know I was really frustrated. I had all sorts of paranoia ran through my brain. I thought my lengthening journey is finished and this is it. I feel like dump and irresponsible not managing this before hand. I wish someone knew and reminded me of that. Well at least you guys know now. It cost less than $30USD but give me $26K headache ??? :o
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Hey Cooper,
I am happy that you are doing OK. Keep it up; this is for you and no one else. By the way you should have your bandages off by now? Would you mind posting some pictures of your scars? Specifically I am interested in where the antenna is inserted and placed.
To decrease the risk of compartment syndrome post-op, Dr. Betz patients get hook up to a pump and drains. They work 24/7 for several days to reduce swelling and expell excess fluids. He also sends in a massage therapist every day to perform a type of soft massage to further help with swelling. Dr. Betz nurses also come in to check on you every hour or so. Along with this, he prescribed anti-thrombosis (blood thinner) medication for fat embolism.
Bohemia, musicmaker, paco1, glenn, and cooper : I know some of you didn't do tibia but do you know if Dr. Monegal does any of the above?
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crimsontide, the last question is directed at you too if you happen to know the answer.
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Hey Cooper,
I am happy that you are doing OK. Keep it up; this is for you and no one else. By the way you should have your bandages off by now? Would you mind posting some pictures of your scars? Specifically I am interested in where the antenna is inserted and placed.
To decrease the risk of compartment syndrome post-op, Dr. Betz patients get hook up to a pump and drains. They work 24/7 for several days to reduce swelling and expell excess fluids. He also sends in a massage therapist every day to perform a type of soft massage to further help with swelling. Dr. Betz nurses also come in to check on you every hour or so. Along with this, he prescribed anti-thrombosis (blood thinner) medication for fat embolism.
Bohemia, musicmaker, paco1, glenn, and cooper : I know some of you didn't do tibia but do you know if Dr. Monegal does any of the above?
Therapist comes almost every day to MIC. I do not know about the massage therapist but if you ask dr. Monegal he can probably arrange one. I will post picture soon.
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is therapy included in the price? if not, How much is it?
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Update: 07/15/15
I probably achieved 2.5cm (an inch). It's been about a month i had surgery. Need to take X-ray to confirm but seems leg is longer by an inch. My legs feels alright but still some numbness on feet area. The area of numbness has reduced significantly but has not disappeared 100%. I am worried about it. It's been month and this should not be an issue at this point.
Legs is slightly swollen. Get worst when i go out especially for work related meeting. i have to iced it and/or compress when i get home. The wounds are almost healed except the osteoporosis area (the big cut). Its coming along well but i think taking bit longer.
I do stretching and therapy 2/3 times a day at home. I stay in stationary bicycle about 15 minutes session usually 2 times a day. Been pretty busy these days. Doing normal stuff like work, movie, restaurant, get together with family & friends. Though i do not like to get out as much. Lot of inconvenience to be in crutches. Limiting myself and only go out when i must.
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is therapy included in the price? if not, How much is it?
Therapy is not included. I paid 40 euro per session.
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im happy you are doing well.cooper. you are strong guy and will be ok.
oh man that pt is so expensive...
so if you need physiotherapy for some months the price Will be highly increased. dr monegal is cheaper than paley or guichet but Still expensive. but if you add pt and stay at mics. oh man LL is for millionaires
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im happy you are doing well.cooper. you are strong guy and will be ok.
oh man that pt is so expensive...
so if you need physiotherapy for some months the price Will be highly increased. dr monegal is cheaper than paley or guichet but Still expensive. but if you add pt and stay at mics. oh man LL is for millionaires
Caludio (therapist) might offer some discount for long term patient. I was only there for 8 days so I paid flat rate of 40 per session. Plus you can do 4 or 5 days per week and that will bring down the cost.
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Cooper I'm glad things are going well for you mate. I've been catching up on your diaries just now so I'm really late to the party here lol. You and I have a lot in common: the starting height mainly. As a result I am wondering as to what your proportions were/are in regards to all of this. Mainly your inseam/height ratio and wingspan. All things considering however, I feel like I'm gonna go down the near exact same path you are currently on; so stay safe buddy, I'm hoping the best for you in life!
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Hey Cooper, how are you doing? Can you please give us an update on your procedure. Thanks.
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Hi cooper
I wanna know about your excperience
Was it good?
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Update:
I had very bad experience with Tibia lengthening. I made terrible mistake of doing tibia with Monegal. I probably went through worst ultimate nightmares. I usually write Dr. in front of him but he lost that honorary title long time ago. Ever since I came to US I had some nuisances about right tibia. It felt something did not go well. But I was giving benefit of doubt. I have been telling all LLers’ through private chat tibia should be easy and since this is one leg I should have much better experience than femur.
Late last year I went to see Dr. Rozbruch in New York to check on tibia. Immediately after reading x-ray he pointed out 3 major issues. 1) Provactum tibia bone curving 2) Fibula migrated up. When the monegal fixate tibia and fib bones he somehow pushed the fibula up and fixate. The angulation is not correct this is major issue out of three 3) low callous and possible non-union 4) lost nerve on feet about 25% (not major but had to fix). Dr. R advised to fixed all three and his assistant wrote a note which I forwarded monegal right away. I asked precisely to Dr. R what can be done with him. The answer was reverse everything and put external fixator for tibia and small monorail for tibia and lengthen. I was devastated to hear that!
I emailed monegal and hoped he can correct the issue. But he denied any of that need fix. Similar response to Crimson: ‘everything is fine' and keep lengthening to your desire 5.5cm. He also advised me not see any LL specialist. I told him ok. But I was not stupid. I knew by then I have major issues and I was only about 3.5cm. I keep lengthening and start looking for a solution to fix right leg and lengthen left leg. I was determined to get it done in US because I cannot take more chances.
The two US doctor I communicated:
1) Paley : first chastised me for going for inexperience doctor second the complication is major and will require more time and money to fix. His recommendation is take out the fitbone, put external fixator to not to loose the distraction gained, inserted non lengthening rod, lengthen fibula by 1cm, plated fibula, fixated tibia/fibula, bone grafted tibia and fibula for non-union, nerve decompression and put new non lengthening rod. He estimated about $100K for fix and left leg lengthening with precise.
2) Rozbruch: fist he did not want to help and asked me to go my first surgeon. I told him monegal is not capable of fixing and cannot be trusted. He said he will help. Cost about the same.
I also contacted few other doctors and everyone agreed on the three issues.
I picked one of the US doctor and currently in recovering. I am not disclosing anything yet and will let you know eventually.
Monegal Issues:
1) Dishonest: He did not disclose all the information and lied on patient count and his experience. He emailed he performed 600 bone segments. Come to find out I was third tibia patient. One of his patient told me in Spain everyone lies. His manipulates deliberately and black mailed his patient to write good things about him and defend him as often as necessary. You cannot trust this doctor and his patient specially from Spain!!!
2) Unethical: If you are not honest than you do not have ethics. Especially in this profession you want to go to doctor who respects patient rights, if something is not right than let the patient know and possible solution to fix. Just not to say everything will be ok. You need more time.
3) Poor Osteotomy: Most of his patient has issue with callous formation. Interesting part is all of the patient with few exceptions are lengthening less than 6cm. Still have poor bone formation. I have both fibula and tibia non-union and misalignment. Grafted both and I gained only 5.3com. I thought I did 6 but the x-ray show 5.3com.
4) Poor logistics: When I had my surgery I was in recovery room for long time. He could not find me and went home without meeting me in person. He later phoned me to say everything went ok. They forgot to put catheter and I did not pee for long time. I screamed and used profanity to get attention at the hospital. The epidural was not turned on and I was in pain for long time. Nursed blamed me tempering with epidural and told monegal I shut it off.
5) Pain management: I was in 10/10 pain level during first night. The worst pain of my life. Nurses and caretaker does not know how to manage pain. Their respond will be ‘that is normal’. On my last two surgery my pain level never went more than 2/3.
6) Fibula bone: For monegal fibula bone is not important and ok to have non-union. Even mentioned he can take fibula bone put some place else for bone lengthening while I was in Spain. Fibula is sort of extra bone put in reserve. Such a stupid comment coming from surgeon. His action is not to do anything regarding my fibula non-union.
7) Forum: He is using forum to fish new patient and anyone raised flag he tries to shut him off either by himself or through his patient. He gets mad to his patient if anyone writes bad thing and continuously monitor forum thread. He probably spends more time in forum than any of us out here.
8) His Patients: most of his patients are good people by heart. We all come from same height neurosis industry and wanting to get taller. I feel forum is fraternity to support each other. This doctor is exploiting forum to his advantage. We need to stop him. I am still in contact with few of them. They need him to fix the issue, correct whatever complication and have to oblige whatever he asks them to write. I would not be surprised if few of his patients come to this thread and try to defend him.
9) Complication: Almost all of his patient has some complications. Many of them cannot walk without crutches. Complications includes but not limited to premature fitbone fracture, fitbone malfunctions, loose screws, serious nerve issue, misalignment and unkown. Unknown are other complications which patient does not know because they have not seen other LL specialist.
Suggestion to Forum Moderator:
Ban monegal effective immediately and stop any patient going to him wherever possible. If I can save one life, leg or limb than I feel my diary has serve good for this community. Why let dishonest/crook surgeon come to forum and exploit the harmony of forum and most importantly destroyed people lives. I intentionally write ‘lives’ because it is not only one patient it’s the entire family involve.
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Cooper, really sorry to hear about your complications and experience with monegal. Hope you are able to get your issues fixed and recover. Thank you so much for coming back to post an update. There were a lot of rumors and hearsay going around about this doctor but it means a lot coming directly from you. You've essentially helped me cross this doctor off my list if I ever decide to do my tibias and I appreciate it. wish you the best man.
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oh man.. That is very bad. I hope you recover from this quickly. And thanks for coming out and warning others about this doctor.
We should make a separate section in forum for such doctors to warn future LLers to save them from such disasters.
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you don't know me but I'm praying for you man
I hope all Americans and Europeans understand as well that if they leave America or the European Union they wave virtually all right sue a doctor for malpractice
it is virtually impossible for an American to sue a Spanish doctor
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This surgery is too risky
I talk with many people, and the vast majority have problems. I'm not singling out any Dr here... The patients that communicate with me didn't all choose the same Dr. There's a high chance of serious complications with most Drs based on numerous patient testimonials
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fk man, sorry to hear :( I genuinely wish you a speedy recovery. Thank you for sharing your experience.
As a percentage, what sort of number of people have complications? In an e-mail correspondence with me, he quite clearly - and recently - stated that he only had one serious complication.
In what way exactly was Dr Monegal influencing patients and what they wrote on the forum - was there any sort of blackmail involved?
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So LLuser was right all along...
He should be allowed to return to the forum
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So LLuser was right all along...
He should be allowed to return to the forum
As one of his critics at the time, I agree. Although I wish he'd been able to provide more evidence, I feel I owe him an apology :-\.
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This surgery is too risky
I talk with many people, and the vast majority have problems. I'm not singling out any Dr here... The patients that communicate with me didn't all choose the same Dr. There's a high chance of serious complications with most Drs based on numerous patient testimonials
This surgery is risky no doubt. Patient should pick a doctor who is 1) honest 2) experienced 3)fix complication. LL is not only inserting IM nail and saying everything will work out. I was lied about couple of early patient surgery went well. Lied about years of experience and 600 bone segments. And when complication occurred virtually no remedy. Importantly his paitent and doctor himself deliberately tried to 'sell' surgery.fk man, sorry to hear :( I genuinely wish you a speedy recovery. Thank you for sharing your experience.
As a percentage, what sort of number of people have complications? In an e-mail correspondence with me, he quite clearly - and recently - stated that he only had one serious complication.
In what way exactly was Dr Monegal influencing patients and what they wrote on the forum - was there any sort of blackmail involved?
He has not done many LL. All the ones I know except one femoral did not have any complication. I was personally in touch with 4 and 3 of them have some sort of complication and if you count me that will be 4 patients with complication. Some of them have major one and not sure if they will ever back walk to normal.
He coach his patient (especially from Spain) to write in a style and potrays him as competent surgeon. And he is not!
So LLuser was right all along...
He should be allowed to return to the forum
This is insane! Why would they ban him? Moderator please help us shade the light. We do not want this forum to be like other one. if this forum was genuinely established to advocate LL and share the truth knowledge & experience than any flags and concern should be seriously considered. I am sure monegal wanted ban and he got what he wanted. Shame on us.
Again I received several PMs in last few hours. My recommendation avoid monegal at any cost whether femur or tibia. You do not want a doctor who is not honest and inexperienced. This surgery should not taken lightly. I could have not walked normal ever in my life if I do not have access to good doctors, technology and hospital. I am still not out of woods. I may need more surgery to fix, time will tell. But praying everything is going to work out this time.
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Hi cooper,
Thank you for being so honest with your experiences , i really appreciate it , i wish you a speedy recovery
By coaching patients ,You mean that he instructs his patient how and what to write ?.........
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He has not done many LL. All the ones I know except one femoral did not have any complication. I was personally in touch with 4 and 3 of them have some sort of complication and if you count me that will be 4 patients with complication. Some of them have major one and not sure if they will ever back walk to normal.
He coach his patient (especially from Spain) to write in a style and potrays him as competent surgeon. And he is not!
To clarify, when you say except on femoral did not have any complication, I presume from the rest of the quote you mean that only one person avoided complications, with the other three suffering some sort of complication? If I can press you more, was this simply a loose screw, or something more serious?
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i feel sorry to hear what happen to you
so musicmaker is also being blackmail and cooper
i am email dr monegal already yesterday, he said quad leg lengthening can walk normal in 8 month. do one whole leg after three month. too good to be true
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Not a Mod but,
I still supported the ban against LLUSER1 for the simple reason that he was a spazz. Constantly spamming another person's diary, Monegal patient or not, with non-vadilated anti-Monegal post. Obviously now we see that he had some definitive truth to his claims, but his method/attitude for how he tried to justify his claims were without a doubt annoying and worth punishment.
As for now. We'll see what the mods do.
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Yes only one patient did not complain. All the rest has some sort of issues. The part worries me is he does not recognize the mistake and fights really hard to make his point and he is right. Dr. Rozbruch is top surgeon and he thinks his recommendation has flaws and not necessary. Dr. Paley and other top Doctor all saw the issue with my right leg. For Monegal it was normal. He clearly have no idea or knowledge. He did not even recognize the issue. All he could say Is everything will be alright. Such a false hope on desperate time.
I took silical boost and vitamin d. Lengthen merely 5cm. And still non Union on tibia and fibula bone. Just did not get it. Callous formation is also heavily dependent upon surgeon technique of osteotomy.
I was within safe boundary, regular PT, vitamins and good diet still has major issues. Careful guys this is not joke. And please do lot of research. If you have any doubt regarding surgeon than do not do it.
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Jeez man...Cooper so sorry to hear about your issues...I hope you eventually recover man. I'm sure you will. It will take time, but you will be ok bro :)
Scary...months ago, I wanted to do tibs with Monegal. I was already weary about this from the sh*t that's been on here, but after this...hell no! Dr. Rozbruch mentioned I might be able to get insurance coverage for tibias because of a varus deformity that I still have post femur LL. And according to Dr. Rozbruch (who I trust very much), it's about 3 months for tibias with Precice. Not terrible.
Cooper how much did you lengthen your tibias by? Are you on crutches right now? Sorry, just wasn't clear on some things from what you said.
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Jeez man...Cooper so sorry to hear about your issues...I hope you eventually recover man. I'm sure you will. It will take time, but you will be ok bro :)
Scary...months ago, I wanted to do tibs with Monegal. I was already weary about this from the sh*t that's been on here, but after this...hell no! Dr. Rozbruch mentioned I might be able to get insurance coverage for tibias because of a varus deformity that I still have post femur LL. And according to Dr. Rozbruch (who I trust very much), it's about 3 months for tibias with Precice. Not terrible.
Cooper how much did you lengthen your tibias by? Are you on crutches right now? Sorry, just wasn't clear on some things from what you said.
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Unfortunately I am in wheel chair. It shocks! I lengthen about 5cm in tibia and had a world of problem to deal with. if you can get insurance and go with Rozbruch that will be awesome! I am sure you will be on feet 3/4 months.
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that is why glen suddenly disppear
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that is why glen suddenly disppear
I forgot to tell you. If anyone disappear from the forum and does not update the diary than chances are patient is going through complication and possibly in despair and depressed.
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Cooper,
It look you have successful operation with paley before .i read you diary. If this so, why you did not choose paley for tibia lengthening?
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Crimson kept warning everyone, again and again and again, but people thought he was just one of those bad outcomes. Respect to cooper, LLuser, and crimson.
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It look like internal surgery , dont have good cases
TRueSpartan, will you do this ?
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Cooper,
It look you have successful operation with paley before .i read you diary. If this so, why you did not choose paley for tibia lengthening?
I made a mistake. I thought i could save about $50k going to Spain. He appeared experience, some LL patient on this forum and Spain is in Europe. He emailed nicely and explained in long email. I have some doubt but thought i should be OK and it's only one leg. Also thought European doctors and medical are equivalent to US. Dead wrong. In Spain everyone lies-- per one Spanish friend. With very successful surgery with Dr. Paley i thought i do not need to go top LL surgeon. Terrible mistake and worst decision of my life!
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Cooper
Thank you for saying honest word. I email Dr Monegal for a little days for a week. He reply fast. I was thinking him over Dr.Pili in Italy for the tibia because external is I dont like and Dr Monegal is not expensive. Dr Moengal say super something that can avoid knee pain internal. He is bad.
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Cooper, sent you a pm!
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Sucks to hear, I hope you can get fixed up.
So there's you, Crimson, and although musicmaker is very happy with his attention, it's no secret that she required multiple corrective surgeries. And now glen is missing? The best option is not doing LL, but if you absolutely have to (crazy in my opinion) Monegal seems a good Dr to miss.
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Lesson here is: Don't go out of the country to save money. Sorry to hear about your troubles, Cooper. I wish you a speedy recovery.
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Lesson here is: Don't go out of the country to save money. Sorry to hear about your troubles, Cooper. I wish you a speedy recovery.
Dr. Guichet is still good, and somewhat cheaper than Paley and Rozbruch. And there are some other European doctors who are good (like Catagni). But now we officially know that this doctor is to be avoided at all costs. I remember writing him last year asking about tibias and he made it seem sooooo easy ...my God, so glad I didn't do it with him. Just need another inch, and I'm set, but have to do it with a safe doctor.
Cooper, you're a good guy, and you're tough. You will make it through this. You are in the hands of a fantastic doctor in either Paley or Rozbruch. You will come out of this!
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So what are you options now? Besides hopefully correcting the right leg, I'm guessing you're now gonna have to do the left leg as well... Who are you going to do it with, and do you think insurance will cover it?
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I am not disclosing my current doctor for many reason. If i do i will probably open another thread. Please respect that for moment.
I am in wheel chair now. Basically in my bed all the time. It sucks, really.....really sucks! I hope nobody has to go through this. That is the main reason i am back in forum to bring awareness and expose the crook/dishonest/unethical/inexperience/manipulative monegal.
But my recovery is going well. I may be in crutches in a month or so. When i was with Dr. Paley i was in walker immediately. We had so good time, party every night with other LLers. It was like college life.
But with one leg lengthening it turned into night mares. Disasters and many months of frustration, anger, resentment and helpless.
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Thank you Yellow Spike. You been supportive since the beginning. I need positive people like you around especially in dire moment like this.
I am sure i will come out ok. I am seeing the best of the best. Just has to go through all this unnecessary correction if i was smart to pick right doctor from the getko.
I thought i am only doing one leg, 5cm, internal lenghtening, in europe, what could go wrong? so wrong!
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Super Patella: This is bull whatever monegal is trying to sell super patella for nail insertion. All the doctor I see in US did not even mentioned a thing. Dr. R was oh super patella and that was it. It could be this approach the nail was not inserted correctly causing provactum on my tibia bone. With super patella nail is introduced above from the knee and the angle of insertion is different than doing directly through knee. I cannot say 100% that is the issue. But this not any innovation or supreme methodology. Be aware of that!
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Hi Cooper
I am sorry to hear you suffering from the wrong choice. He is indeed very disappointing and untrusty.
What a disaster to you.... However, you are a brave and strong man. You can go through this and achieve your goal, although there has been unnecessary misfortune.
Wish you the best of luck for the rest of your ll journey!!
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Hi Cooper
I am sorry to hear you suffering from the wrong choice. He is indeed very disappointing and untrusty.
What a disaster to you.... However, you are a brave and strong man. You can go through this and achieve your goal, although there has been unnecessary misfortune.
Wish you the best of luck for the rest of your ll journey!!
Thank you for kind words.
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I had the supra patellar insertion
it's a known technique, but not as common
I got it because I thought it would avert knee pain
I can say that kneeling on the knee hurts. This is common though with any nailing while the rod is in. The only reason though for getting the supra patellar was to avoid this, so in that sense, i would say there's no reason to get supra patellar.
I also have a bit of irritation/pain in the interior of my knee/leg, though hoping that's from a screw ,since that can be removed. It is quite annoying
Supra patellar is not unknown, but I'm guessing there's a reason why most Dr's do not perform the surgery in this manner
My opinion: Get the nailing done by regular insertion. Supra patellar's only supposed benefit is to avoid the knee pain that occurs with regular nailing, and in my case, supra patellar was a failure in this regard.
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I can't find the whole study online but here is the abstract of the intra-articular risks of suprapatellar nailing http://www.ncbi.nlm.nih.gov/pubmed/23550286.
Here is a quote from the study:
"Suprapatellar nailing is associated with a risk of injury to anterior knee structures comparable to other nailing techniques. "
I also saw a presentation few years ago that argued that suprapatellar nailing does not avoid the risk of anterior knee pain, unfortunately I can't seem to find it.
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Here is another study that concludes no difference in knee pain between suprapatellar and infrapatellar nailing approach http://upoj.org/wp-content/uploads/v24/09_Courtney.pdf
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Hi Cooper,
sorry to hear your story bro, But isn't Monegal certified by WITTENSTEIN for fitbone use. I thought they overlook his practice. Can you contact/complain to them about Monegal?
blah
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Hi Cooper,
sorry to hear your story bro, But isn't Monegal certified by WITTENSTEIN for fitbone use. I thought they overlook his practice. Can you contact/complain to them about Monegal?
blah
That is what I thought. Trained by fitbone manufacturer. But that may not mean anything. If the case is in US easy to file press charge for lying, dishonest and unethical. but in Spain I do not know. And culture is different as I mentioned before per Spanish friend everyone lies in Spain. Do not know how much of that is true.
I am focusing on my recovery. In coming days I hope some more patient come forward and share experience. May be cumulatively we can file class action law suit.
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Cooper
Can you show x ray? I chat a chinese guy too from china and he is ok
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Cooper,
It's a little concerning that none of Monegal's other patients are posting, even when you shed light on this whole thing. No one is out here defending him and neither is he. When lluser was posting he and all his other patients were having a fit over it. This is too silent for them and I would like to hear from them about all this?
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Cooper,
It's a little concerning that none of Monegal's other patients are posting, even when you shed light on this whole thing. No one is out here defending him and neither is he. When lluser was posting he and all his other patients were having a fit over it. This is too silent for them and I would like to hear from them about all this?
Patients have reservations from posting because of users like LLUser1. He got one unhappy patient to divulge private and medical details about other patients and started posting them on this forum and even made a post about stalking patients at the guest house. And also lots of creepy stalkerish details like the number of times a patient has flown to see Dr. Monegal or whether or not someone is rich and has a pool at their house.
LLUser1 deserves the ban for abusing his access to patient details, not for what he exposed about the doctor.
I also don't think it is other patients place to come here and defend the doctor when Cooper's major complication is real.
Wish you a speedy recovery Cooper.
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I communicated a bit with this guy last summer, and it just all seemed fishy to me. He kind of like yes'd me to death and make it seem like I could do 3cm on my tibs and be walking like super fast (with Fitbone). Just seemed way too good to be true. Dr. Catagni and Dr. Paley both refuted his claims (anonymously, I didn't tell them it was he I was consulting with) as laughable. For me, when I do tibs, it'll have to be either Rozbruch or Catagni.
Cooper, you will get through this. PM me if you need anything man! You were one of the stories I followed when I was researching femurs like two years ago now lol
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Today I have spoken with doctor Monegal about what is said in the forum about him and I've asked him if he could explain to me his point of view.
I'm not the judge for this trial. I am neither against nor for Monegal/Cooper, but if I'm interested as a patient in knowing what has happened
The doctor told me that he has had enough attacks in the forum and that is not going to get into it, because another user could appear tomorrow saying anything about his patients, and it will be the neverending story.
The doctor told me that he can not give names of their patients, a nickname of a user in a forum could be other person.
The doctor could not disclose specific information from a patient's own (radiographs, exchanged messages) regardless of whether a patient speak well or bad about him.
The doctor tells me that one of his patient sent by mail planning how to perform postoperative leg. This patient told him to remain under supervision for 1-2 months in Barcelona al MIC apartments to control evolution. This patient two week after surgery decided to return to his country, so the doctor could not track the patient. The patient was sent just 2 radiographs during lengthening and healing phase.
The doctor has told me more things of messages exchanged each other by whatsapp,, the patient told him that he does to a normal life and traveling.
I do not want to go into the details of these messages but they give a lot to think about this case.
Are you Cooper this patient?
If you are this patient, I think you have to be more honest. Not all doctors are bad, and not all patients are saints.
This surgery has many risks and if certain guidelines are not followed, the risks increase.
I hope you get to meet the expectations that you have marked.
About Justice in Spain, you can go to the Spanish courts and if you do not agree with the verdict, you can go to the European Union. The courts of the European Union are above Spain, Germany or any other european country.
As I said I'm not the judge, only I bring here the point of view of the doctor, but if I have not post more information that doctor told me about this case, because I think that this is enough, and I do not look for a guilty.
This is like when a plane goes down, it is not only the amount of things but is the accumulation of many things which brings down a plane.
My best wishes Cooper.
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Got to say it... Monegal (& other surgeons) can't respond to hearsay/psychodrama on public forums because they are bound by confidentiality. They could (all of them) just decide not to bother doing CLL, at all...
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First and foremost, I’d like to wish Cooper a full & speedy recovery. At the end of the day the health and function of his limbs is the most important thing here.
Ban monegal effective immediately and stop any patient going to him wherever possible. If I can save one life, leg or limb than I feel my diary has serve good for this community. Why let dishonest/crook surgeon come to forum and exploit the harmony of forum and most importantly destroyed people lives.
I do however want to voice my opinion on comments he’s made that I don’t particularly find balanced/fair. Now, before all of you known trolls come out of the woodwork to tell me that I’m a fake, made-up patient who doesn’t know what he’s talking about then let me stop you in your tracks. I know Cooper. I was in Barcelona doing bilateral femurs when he arrived for his tibia surgery. I showed him around the guest house before his operation, and we’ve broken bread together many times since. I have a tremendous amount of respect for Cooper, not only as a fellow patient, but also as a human being that has been VERY successful in the REAL world due to his own hard-work and perseverance.
Therefore, you can imagine that he was at the top of my list when it came time to talk about possibly doing bilateral tibias with Dr. Monegal. I spoke to Cooper on the phone for more than an hour about his tibia complications, his post-op dialog w/ Monegal, and his follow up visits with other doctors. Yet, after hearing all of his complaints I still decided to give Dr. Monegal the benefit of the doubt and I went through with my bilateral tibia surgery. YES, you’ve read that correctly. Even after hearing the “nightmare” that Cooper experienced, I still opted to undergo the exact same surgery with the exact same doctor. Do I regret this decision? No, not at all. If you’re wondering, why? Keep reading.
As always there are two sides to every story. As was explained to me, Monegal did recognize that Cooper had a problem, largely due to misalignment that had occurred during the distraction process. However, to Dr. Monegal, this misalignment was always within a manageable range and his intention was to correct this when Cooper returned to have his other tibia operated on. Unfortunately, by this time Cooper had lost all faith in Dr. Monegal and shut him out completely. From my understanding the proposed fix should have taken Monegal approx. 15 min via the manipulation of Cooper’s leg and some existing screws. The end result would have been the introduction of a “polar” screw that sits behind the fitbone nail and anchors it in place so that it cannot deviate inside the tibial canal. As a preventative measure Monegal placed 2 such “polar” screws in my tibias and I can tell you that I suffer from no misalignment. I have lengthened 4.5cm to date and my implants are anchored just as well as they were the day of surgery. I have little to no discomfort, have ankle flexion of 120 degrees, and am generating bone in both tibias and fibulas.
To surmise:
Do I think that Cooper had legitimate concerns regarding the evolution of his tibia? Yes, absolutely.
Do I think that Dr. Monegal was willing, wanting, and capable of addressing Cooper’s concerns? Yes, I do. If he’s talented enough to fix compound fractures & limbs on the verge of amputation under his watch as an orthopedic trauma surgeon, I doubt cosmetic misalignments fall beyond his ability.
Do I have an opinion on whose fault it was that Dr. Monegal lost Cooper’s trust? That’s finger pointing that wouldn’t do anyone any good. At the end of the day I think there was a massive failure in communication between patient/doctor, and had this not been the case the outcome may have been very very different.
Moral of the story:
LL is extreme surgery. Complications can & do arise. Doctors are not perfect nor infallible. Patients are not perfect nor infallible. If you don’t have 100% confidence in your surgeon, or have reason to believe that your confidence in them may be eroded should you encounter a complication, DO NOT commit to surgery.
Best to all & happy lengthening.
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I also don't think it is other patients place to come here and defend the doctor when Cooper's major complication is real.
agreed. how could they possibly know more about cooper's situation than cooper himself.
Got to say it... Monegal (& other surgeons) can't respond to hearsay/psychodrama on public forums because they are bound by confidentiality. They could (all of them) just decide not to bother doing CLL, at all...
Not a problem at all if the surgeon is unethical to begin with. it seems the doctor is disclosing details of cooper's case to his other patients who, for some reason, feel compelled to elaborate on cooper's case on the forum.
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Hey ShortDarkAndHandsome. I appreciate your info. Thank you.
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ShortDarkAndHandsome, see, my problem is that Dr M in emails very much implied music maker was his only complication.... That isn't the case...
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musicmaker, I am interested in surgery with external fixation. Do you know if Dr. Monegal often use external fixation like Taylor Spatial Frame and Truelock Hexapod in surgeries in leg deformity corrections and LL ?
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why it is so expensive to fix cooper $10,0000 and it is a minor complication?
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Of course easy complications... Curved tibia (worse that malallignment) with a malplaced fibula. Sure you can just open and move all the lengthened bones like nothing happened (Stupid Ilizarov for inventing a device that was created just for that! Since curved bones are not easily dealt with).
You are a liar music maker. The fact that you defend a doc that screwed your leg shows that something is mentally broken with you. 1 years crippled and you are ok with it.
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We should distinguish between obstacles, problems and complications, according to Paley's classification ("Problems, obstacles, and complications of limb lengthening", Clin Orthop Relat Res 250, 1990, 81-104) (http://www.ncbi.nlm.nih.gov/pubmed/2403498). In Dr. Paley's words,
Since Cooper's problem could be easily fixed when doing his second leg, his was not a 'complication', according to Paley's classification, whereas mine indeed were. Dr Monegal was not lying.
Oh give over please.
Complication
2.
MEDICINE
a secondary disease or condition aggravating an already existing one.
The definition there is quite clear. When Dr Birkholtz talks about complications, the definition is quite clear. When Dr Guichet talks about complications, the definition is quite clear.
The e-mail from Dr Monegal states he has only had screw pushes and yourself (I wish you a speedy recovery), when I ask about complications I think it's fairly obvious to all and sundry that I'm going by the dictionary definition, not some medical classification of different issues. There is a quite clear admittance of Cooper's situation. I think anyone would understand Cooper's is a complication, and if you are redefining words, I still think it is clear that when I ask about complications, Cooper's condition is something I would very much want to know. I certainly view failure to mention Cooper's situation as lying by admission.
See Cooper's point 1.
Having had a conversation with another person who was debating Dr Monegal, he was also under the same impression as I regarding complications. I also understand from Lluser's earlier post, it was this that pissed him off.
At the end of the day, I am, we all are, playing roulette with our health and mobility plus it costs an absolute ton. What we all want is accurate information in order to gauge our most appropriate move.
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This man has a load of bad cases. All doctors have bad cases but the facts prove this one isn't honest.
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One of the problems I think that we encounter with leg lengthening is that orthopedic surgery in general is a very crude practice. I have never been in a leg lengthening procedure, but I have assisted in hip and knee replacements and similar principles and techniques apply.
Reaming out bone cavities and screwing bone fragments into rods feels far more like rough carpentry in the operating room than it does a precise science. And when we're talking about alignments of joints which can lead to early arthritis with only a mm or two off, there is a lot of room for very easy to make, very significant error.
Take the fixation of the distal femur/tibia relative to the proximal. Even a slight misalignment in any one axis (which can be induced even by the process of drilling in the screws) could cause chronic joint problems down the road. Bones are rigid, and once they heal in place, they will just grind on any points of unequal stress until arthritis develops.
It seems apparent based on the case reports of guys like Guichet/Paley that some doctors are very good at maintaining sufficient alignments that such issues do not become chronic problems at least for 10+ years post-op. Beyond then? Who knows.
But if you have seen a hip replacement or knee replacement by a good academic surgeon, you will understand that even the best orthopedic surgeons are not that "precise", and why there is such a variance in outcomes. It is just intrinsic to the nature of the crude "hack, slash, break, saw, and drill" kind of surgery that we are dealing with.
This is one of the reasons I have always been such a big fan of the external hexapods like Taylor Spatial or what KiloKAHN went with. They are the only way to go back AFTER the initial surgical cuts are made and progressively throughout the recovery period maintain and control axis in all three dimensions of space.
The Reverse Planning Method championed by Dr. Baumgart should in theory offer the same degree of control, but that degree of control is limited by the human element of trying to get all the screws and rods in exactly the right position during the first operation, which is really, really hard to do down to the mm. Any slight error may be potentially amplified by lengthening.
If I was an orthopedic surgeon, it is not a surgery I would be eager to provide cosmetically given the enormous range of possible outcomes even with best efforts and experience, and the unknown consequences of a slight misalignment 20 years from now. I think I would only want to do it with a TSF/hexapod, because that's the only way you truly have mm-level control over fixing the almost inevitable small misalignments that may occur during the first part of the procedure.
That said, as someone who wants to get LL, if I go ahead with it I will still probably go with an internal femur approach, because the benefits of speed are worth it. I would be sure I go with someone who has a good reputation and many years of experience. I would also want to make sure I select a doctor who has a measured and even, calm demeanor, rather than one that is prone to excessive emotionality or too eager to downplay risks.
It's too bad you've had a bad outcome Cooper. I'm glad you're getting it sorted out. It sounds like from what the other patient said here Dr. Monegal wanted to fix it but not until you were finished extending. This is as I said the reality of going with a non-hexapod device - if errors take place, it limits the ability to fix them straight off.
You probably made the right decision getting it fixed sooner than later. I don't know what happened to bluebarbie in the end, but I practically begged her to go get a TSF correction of her horrible monorail misalignment rather than just wait like her surgeon was telling her to. The longer you wait with misalignments, the more consolidation you get. It's true the callus is soft and can be "bent" manually during a refixation process, but this will to my understanding just be done roughly by hand. It won't have the precision of a true hexapod/TSF correction.
Good luck on getting better. I'm sure you'll bounce back.
How are you managing financially with this level of extended and unexpected disability? If you don't want to answer here, you can PM me. I'm mostly curious because my biggest impediment to LL outside of the alignment error fears is difficulty getting sufficient time off work and from having steady income.
Thanks for sharing your experiences with all of this. It's unfortunate you went through it, but it's valuable to everyone that you have shared it.
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Not sure if you've answered this elsewhere but if you don't mind my asking why did you go to this Dr.? From my impression when we met, you seemed to do well for yourself and could have afforded the best.
Hope recovery is going well my friend.
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Cooper I enjoyed your diary and posts, thank you for sharing. I'm hoping you have a great resolution to issues with your tibia lengthening. Looking forward to your next update :). If I may ask, did Monegal tell you it was ok to finish lengthening at home instead of spain?
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Most patients finish lenthening at home, even those doing a one stage procedure, and patients who do 2 stages always go back home some days after surgery: Paco1, Yagen and Aboli. Patients are allowed to leave as early as 4 days after sugery according to the doctor's thread. Paco and musicmaker have no diary but they left as early as that according to their posts last year. No wonder these patients have complications.
It seems to me this doctor underplays risks and doesnt' care much about his patients once he gets his money. I think Cooper has reason, he is using this forum to fish new patients. He seems to care more about getting new patients than taking care of current patients. His patient Nomad said that. This doctor brags a lot and he seems more concerned about his reputation than about his patients. That's very sad.
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After reading this whole diary, my final understanding of it is, Cooper might have been right, and he kind of warned us of what could happen. I am not sure if anyone else have noticed but, cooper is not replying to any posts anymore. I would guess that he’s been banned from posting. Also have you noticed how "ShortDarkAndHandsome", and "musicmaker" only commented on the post when cooper was unable to reply back? ??? "ShortDarkAndHandsome" even claimed that he knew cooper. which I can’t help but think that both musicmaker, ShortDarkAndHandsome, and possibly the moderator have been manipulated or bribed in order to remove cooper from the forum and post those comments. In my opinion, I don't think cooper would stop replying to this post after everything he’s been through. On top of this all, ‘ShortDarkAndHandsome’ and musicmaker only posted once (as agreed) to clear the air, and didn't post again. That shows that they had no intentions or interest to be involved in this topic, but they were simply fulfilling an agreement. RIP to cooper, one lost soldier, I am probably the next one to be removed off the forum for posting this. I believe the same happened to another patient of Dr Monegal called "Bohemia". He was doing so well, then all over sudden stopped posting...mmmm ???
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Cooper isn't banned. He hasn't been active in a while though so hope he's okay.
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Cooper isn't banned. He hasn't been active in a while though so hope he's okay.
Good to hear that
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Cooper is right and Lluser1 was right. In this diary you have the proofs you were asking for. Patients themselves talking about their cases. I hadn't pulled those stories out of my ass. I am so happy people start to discover I was telling the truth.
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Does anyone know where cooper disappeared ? Any information on him?
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I believe these people sued Monegal and their silence was part of the agreement. That is my opinion only.
What i have noticed is Musicmaker, Cooper, etc had surgeries from an inexperienced surgeon, Monegal, who has improved his technique though at the expense of some harm....I am guessing. Some of had good results in recent years and yes all surgeries are risky. Do get speak to past patients before surgery!
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I sent a personal message