I got a few questions in my inbox that I will answer here so everyone can see them.
(1) I want to ask you about choosing a physician. I have considered several physicians, including Dr. Paley, Dr. Donghoon Lee, and Dr. Assayag. I have emailed each of them, and they all claim to be very safe, with no patient deaths, no non-unions, and patients can recover as long as they follow the physician's instructions. I want to believe them, but I feel that I cannot fully trust them. You once said that you spent several years collecting information; what advice do you have for choosing a physician?
I personally wouldn't do it anywhere else, especially given that I live in the US. Usually people choose other doctors because they are cheaper, but I find it irresponsible for yourself to save money for a higher health risk. If you don't have the money, don't do it, or do it later when you have enough saved up. There usually is a reason for cheaper price. For example, what I've heard is that the vegas doctor only gives you like a week of PT and then you need to do exercises on your own or find your own PT. I've heard other things about his place. People would think that putting the nails in is the biggest part while it is not like that. If everything goes well, then you probably be fine anywhere you do it, but if things don't go as planned, I don't see anywhere would even be close what Paley offers. Other than Paley, I considered a doctor in LA, Dr. M (forgot his full name), but too few data points (diaries) that I can find about him. I eventually went with Paley.
If you are really not sure, go visit their place. I wasn't so sure about doing this surgery at all until I paid a visit almost 2 years ago now.
Also on collecting information, I did these things that you can do too - read all diaries on this forum about the places you want to do the surgery at, read the doctor's papers, and talk to people who've done it there.
(2) After experiencing the painful lengthening and consolidation process, has there been a time when you regretted it, during the months when you couldn't walk normally and had to rely on others? Did the psychological and mental stress cause you to regret your decision?
Other than the first two weeks post-op, I wouldn't say it is that painful, especailly the consolidation process. Most people can be fully independent by 1 month post-op, so I didn't really have to rely on others. I never regretted my decision. What helped me a lot is that I have a lot of people to talk to about this surgery. Everyone around me knows that I am doing this surgery. I know it is not the case for everyone, but at least have one person you can talk to freely about what you are going through. Get a counsellor or something like that.
(3) Among your CLL friends at the Paley Institute, were there any cases where the surgery did not go smoothly or the recovery was poor? I want to be prepared for the worst-case scenario.
I've heard stories of people had such bad nerve pain that even taking 9 gabas a day wasn't helping much, but that's rare. I've never met anyone who had non-union or premature-consolidation or bent nails or anything crazy. This doesn't mean they don't happen, but they are very rare. I only hear of these nightmare experiences from PTs who've been here for like a decade, and they've probably seen very few of these cases.
(4) Do you think stretching and even practicing yoga should be started a year before surgery? Should lower body weight training be avoided, as having too much muscle might not be good?
Lower body weight definitely helps. Having a stronger upper body helps as I said in the last post that moving around with a walker requires good upper body strength, but you don't want to be like hulk level upper body cause you want to prioritize lower body weight. It would help a lot if you can maintain a <150 lbs weight. I weighed almost 200 lbs going into the surgery and was always very careful because my nails are only 150lbs weight bearing.
Getting into the habit of stretching helps, but stretching itself may not help that much, you get what I am saying here.
(5) If time is not an issue, how long would you recommend staying in WPB?
Get there like 3 days before the surgery day to prep your hotel room. 7 days after surgery you start lengthing. Then every 1 day for every 1mm you are targeting. At last, give a week after you've done lengthening to do some final adjustments and some time for packing and leaving. So if you want to length x cm, stay there for (10x+17) days at least.
(6) Various complications are what make me hesitate the most, including the most feared FE and PE. How does Dr. Paley prevent these situations from happening? How does he avoid permanent nerve damage? What does he do to prevent non-unions? I once watched Dr. Lee's YouTube video where he said that a physician's surgical technique and experience could greatly reduce the chance of non-unions.
Paley has some technique to prevent it but he will tell you very clearly that the chance is not 0. Not smoking is probably the most critical here. I understand you have this fear. I had the same fear too. The stats at Paley is about 2 in 400 cases that had bad PE and ended up in ICU, where he told me that he was very stressed about them not making it but eventually they all made it okay. You may find it ridiculous but some people do lie to the doctor about smoking so they can do the surgery. Some even smoke weed in their hotel rooms during lengthening.
Avoiding nerve damage is by controlling the rate of lengthening. For femurs, 1mm a day is usually safe, if nerve pain out of control then lower to 0.75mm per day. I don't know much about non-union. It was never on my mind. The patients I knew also didn't really have that on their mind. It is very rare for sure. Day to day you will worry most about nerve pain and muscle tightness.
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Topic: Bilateral Femur with Dr. Paley 11/2022 (Read 23660 times)