Quote from: BeYourBest on July 24, 2019, 03:38:35 PMThat's fair - thanks for your response. I hope everything gets better very soon!
Thanks, I'm hoping for more of the same. The important thing is to stay positive because depressing over something we can't change won't make things easier, though I know this is easier said than done, but I'm trying!
Is Dr. Rozbruch somewhat disconnected with patients tiggy? I get that impression from reading another girl's diary here who had issues.
He is obviously one of the best in the business but he somewhat seems aloof about CLL: no clear price estimate, emails full of punctuation mistakes, no designated PT after surgery, does not distract nail after surgery to test if it works, etc.
I am sure you will be fine tiggy! Keep your spirits up!
Quote from: cena on July 24, 2019, 06:14:16 PMIs Dr. Rozbruch somewhat disconnected with patients tiggy? I get that impression from reading another girl's diary here who had issues.
He is obviously one of the best in the business but he somewhat seems aloof about CLL: no clear price estimate, emails full of punctuation mistakes, no designated PT after surgery, does not distract nail after surgery to test if it works, etc.
I am sure you will be fine tiggy! Keep your spirits up!
Hey Cena, interesting question. I would say he is aloof in a sense that he seems to approach the surgery lightly. When he is in the room with you he doesn't rush or anything, but I feel as though he doesn't ask enough questions and let's you tell him if there are things that bother you. Another reason why I feel as though he is aloof, for example during my last visit he told me (as he usually does) that I have 2 options, I can continue or stop. He made it sound as if 2 inches is a big enough gain and I should be happy with it. Don't get me wrong, 2 inches is a big deal and I am happy with it but given that I've spent over $100k to have surgery with him, I'd like him to appreciate that fact and encourage his patients to go forward if it is safe for them to do so. I explicitly asked him whether it is safe for me to proceed, to which he replied yes. So I was a little confused as to why he would even bring up stopping when he knows my goal is to go to the end unless I am unable to do so for whatever reason. Mind you, my flexibility is at 130-135 degrees knee bend, which is quite great. As his patient i would like him to appreciate not only the monetary cost but also the pain and suffering we go through for this surgery just to gain 3 inches. So I personally felt as though he takes all these factors lightly. Perhaps to him $100k is pocket change but for most other people it's a significant sum, including myself.
Yes punctuation is also quite horrible and he keeps his emails very brief. I understand that in the interests of time he may be rushed to get emails out especially since very few people who email him actually end up scheduling a procedure. However given that you spend like what $400 or $600 (I forgot) to see him, it would be nice to write more than a few words in his replies.
There are other reasons why I'm not completely happy with him, including that after surgery I actually didn't see him until 2 days post op. However I do feel confident in his expertise and I do like that he doesn't have a salesman type of mentality when it comes to this surgery. But there must be a balance I think.
In terms of him checking the nail during surgery, I never asked him whether he does so but I do believe that IFS in his diary stated that he does distract the nail after surgery to make sure it works. I just assumed that this was the case and never actually asked him myself. So I can't comment one way or another to the validity of that statement.
Quote from: cena on July 24, 2019, 06:14:16 PMIs Dr. Rozbruch somewhat disconnected with patients tiggy? I get that impression from reading another girl's diary here who had issues.
He is obviously one of the best in the business but he somewhat seems aloof about CLL: no clear price estimate, emails full of punctuation mistakes, no designated PT after surgery, does not distract nail after surgery to test if it works, etc.
I am sure you will be fine tiggy! Keep your spirits up!
Hey Cena, interesting question. I would say he is aloof in a sense that he seems to approach the surgery lightly. When he is in the room with you he doesn't rush or anything, but I feel as though he doesn't ask enough questions and let's you tell him if there are things that bother you. Another reason why I feel as though he is aloof, for example during my last visit he told me (as he usually does) that I have 2 options, I can continue or stop. He made it sound as if 2 inches is a big enough gain and I should be happy with it. Don't get me wrong, 2 inches is a big deal and I am happy with it but given that I've spent over $100k to have surgery with him, I'd like him to appreciate that fact and encourage his patients to go forward if it is safe for them to do so. I explicitly asked him whether it is safe for me to proceed, to which he replied yes. So I was a little confused as to why he would even bring up stopping when he knows my goal is to go to the end unless I am unable to do so for whatever reason. Mind you, my flexibility is at 130-135 degrees knee bend, which is quite great. As his patient i would like him to appreciate not only the monetary cost but also the pain and suffering we go through for this surgery just to gain 3 inches. So I personally felt as though he takes all these factors lightly. Perhaps to him $100k is pocket change but for most other people it's a significant sum, including myself.
Yes punctuation is also quite horrible and he keeps his emails very brief. I understand that in the interests of time he may be rushed to get emails out especially since very few people who email him actually end up scheduling a procedure. However given that you spend like what $400 or $600 (I forgot) to see him, it would be nice to write more than a few words in his replies.
There are other reasons why I'm not completely happy with him, including that after surgery I actually didn't see him until 2 days post op. However I do feel confident in his expertise and I do like that he doesn't have a salesman type of mentality when it comes to this surgery. But there must be a balance I think.
In terms of him checking the nail during surgery, I never asked him whether he does so but I do believe that IFS in his diary stated that he does distract the nail after surgery to make sure it works. I just assumed that this was the case and never actually asked him myself. So I can't comment one way or another to the validity of that statement.
Thanks for the reply.
Dr. Paley presented a video about CLL and in that he mentions that he tests the nails after surgery and goes on to say that Dr. Rozbruch doesn't test them and that he (Paley) gets all the bad nails. Don't know if it was a joke.
Thanks for the reply.
Dr. Paley presented a video about CLL and in that he mentions that he tests the nails after surgery and goes on to say that Dr. Rozbruch doesn't test them and that he (Paley) gets all the bad nails. Don't know if it was a joke.
Quote from: cena on July 25, 2019, 03:09:35 AMThanks for the reply.
Dr. Paley presented a video about CLL and in that he mentions that he tests the nails after surgery and goes on to say that Dr. Rozbruch doesn't test them and that he (Paley) gets all the bad nails. Don't know if it was a joke.
Interesting, I will make a note to ask him about this next time, let's hope I remember. I think it's smart to distract a patient right after surgery, not only to test the nail but also to get them some extra height right there and then. Another point of interest is how likely is it that a nail may malfunction during the actual lengthening, say for someone like me who's past the 5cm mark. I can't remember if I've read about this on this forum but I'll try to remember to ask this as well.
How's it going Tiggy? Been a while since your last update, hope everything is going well!
Quote from: TheAlchemist on August 11, 2019, 11:24:44 PMHow's it going Tiggy? Been a while since your last update, hope everything is going well!
Hi Alchemist,
Things aren't going as well as I've hoped. I saw him for a follow up last week and my bone isn't filling in, so it's gotten worse than before because at least before I've had some growth. This was quite worrying on multiple fronts. I must admit partially I am to blame I think because I haven't walked much since my previous follow up so I think the lack of movement has made it worse. However even despite that my growth has been extremely slow. At the moment I am doing the accordion maneuver, whereby you distract one day and decompress the following. I am to do this for 2 weeks and then rest for 2 more weeks. This means that for a month I will not be growing at all. The maneuver is supposed to help stimulate bone growth.
In addition to that I have stopped all medication I was taking, including the gabapentin and the meloxicam. Perhaps the meds have contributed somewhat to slow bone formation and so we think it's wise to stop them all for time being and see what happens.
Lastly he has me taking strontium, which is supposed to stimulate bone growth as well. I am seeing him in 4 weeks and at that point if things don't improve I think I would have to get a bone graft. I really hope it doesn't get to that but we ll see how it turns out.
Dr R has also mentioned, AGAIN, that I should consider modifying my goal. At the moment my left leg is at 6.5cm and the right is at 5.9cm. I have NO intention of stopping short of my goal of at least 7.5cm but somehow he repeatedly brings this up to me whenever I see him. I've asked him whether he had any patients of his with a permanent complication of non union and he explained that no, none of his patients have had such issues. Which means the bone will fill in, it's just a matter of time. And if that's indeed the case, what exactly is the point of me cutting my goal short??? Just so I can heal a month sooner? After all the expense, pain and discomfort associated with this surgery, not to mention being locked up at home the entire summer, I would feel horrible to stop now before reaching my goal. I made this point to him as well to which he didn't really have any reply. Not to mention, my flexibility is excellent still, knee bend is at 130 degrees.
I don't know if I'm being unreasonable for dismissing his comments and I would certainly love to hear what you guys think but I'm quite annoyed that he brings up the topic every time I see him even though I've expressed to him that I am resolute as to the final length that I want to attain.
Quote from: tiggy on August 12, 2019, 06:49:53 PMHi Alchemist,
Things aren't going as well as I've hoped. I saw him for a follow up last week and my bone isn't filling in, so it's gotten worse than before because at least before I've had some growth. This was quite worrying on multiple fronts. I must admit partially I am to blame I think because I haven't walked much since my previous follow up so I think the lack of movement has made it worse. However even despite that my growth has been extremely slow. At the moment I am doing the accordion maneuver, whereby you distract one day and decompress the following. I am to do this for 2 weeks and then rest for 2 more weeks. This means that for a month I will not be growing at all. The maneuver is supposed to help stimulate bone growth.
In addition to that I have stopped all medication I was taking, including the gabapentin and the meloxicam. Perhaps the meds have contributed somewhat to slow bone formation and so we think it's wise to stop them all for time being and see what happens.
Lastly he has me taking strontium, which is supposed to stimulate bone growth as well. I am seeing him in 4 weeks and at that point if things don't improve I think I would have to get a bone graft. I really hope it doesn't get to that but we ll see how it turns out.
Dr R has also mentioned, AGAIN, that I should consider modifying my goal. At the moment my left leg is at 6.5cm and the right is at 5.9cm. I have NO intention of stopping short of my goal of at least 7.5cm but somehow he repeatedly brings this up to me whenever I see him. I've asked him whether he had any patients of his with a permanent complication of non union and he explained that no, none of his patients have had such issues. Which means the bone will fill in, it's just a matter of time. And if that's indeed the case, what exactly is the point of me cutting my goal short??? Just so I can heal a month sooner? After all the expense, pain and discomfort associated with this surgery, not to mention being locked up at home the entire summer, I would feel horrible to stop now before reaching my goal. I made this point to him as well to which he didn't really have any reply. Not to mention, my flexibility is excellent still, knee bend is at 130 degrees.
I don't know if I'm being unreasonable for dismissing his comments and I would certainly love to hear what you guys think but I'm quite annoyed that he brings up the topic every time I see him even though I've expressed to him that I am resolute as to the final length that I want to attain.
Im ... sorry to hear.. your nonunion complications...
Are you taking calcium supplements and protein shakes?
You need to move them legs ... that will encourage bone growth ..
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