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[tiggy]

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!

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.

[cena]

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.

[tiggy]

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.

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.

[TheAlchemist]

How's it going Tiggy? Been a while since your last update, hope everything is going well!

[tiggy]

How'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.

[PANDA:BEAR..]

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.

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 ..

[InFullStryde]

Hi Tiggy,

It sounds like you are battling through these challenges and that is exactly what you need to be doing. You're only 15 days away, technically, from 7.5cm on both legs; so when you're able to resume net positive distraction ; you'll be completed in no time.  With that in mind; the fact that Dr. R DID NOT flat out implore you to stop is a good sign that he believes that this goal can be reached still.   I will say this, sometimes doctors will float out ideas such as "I recommend adjusting goals"; in order to validate the potential that you may be feeling like stopping and wants to give you that confirmation that its okay.  Also, Dr. R, may just be throwing out the option since he knows that you have reached that 2.5 mark which is still pretty darn good and he knows that stopping will ease the recovery a bit at this point. 

I can remember when I reached about 1.7 inches of growth, that I reported the numbing sensations in my left leg to Dr. M.  Dr. M actually told me, that all should be okay; but if I did not feel up to the tasking that the numbness and tingling will bring, that he recommended I stop.   He was very direct with me.   

All should be just fine.  Is there no callous in the lengthened gap or just little callous?  I have a feeling that your next appointment will provide greater clarity to the situation. Also, you mentioned that you had not walked much since your last appointment. When was your last appointment and are you still standing on your feet and just not walking? Or no standing as well.

Thank you for sharing with the community. If you have any questions or I can help in anyway, let me know.

All the Best,

IFS

[tiggy]

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 ..

Hi Panda,

Yes I am taking calcium supplements in the form of Citracal, which includes calcium and vitamin d. I haven't been taking protein shakes since I've been consuming lots of protein but why the hell not, I'll start with the shakes as well. Can't hurt.

[PANDA:BEAR..]

Hi Panda,

Yes I am taking calcium supplements in the form of Citracal, which includes calcium and vitamin d. I haven't been taking protein shakes since I've been consuming lots of protein but why the hell not, I'll start with the shakes as well. Can't hurt.

Listen.... you will reach your goal ...  you must try to walk with some assistance..
Also plain yogurt... has natural calcium.... I wish you the best...
But please my friend be positive mentally... you will get there ..,

[tiggy]

Hi Tiggy,

It sounds like you are battling through these challenges and that is exactly what you need to be doing. You're only 15 days away, technically, from 7.5cm on both legs; so when you're able to resume net positive distraction ; you'll be completed in no time.  With that in mind; the fact that Dr. R DID NOT flat out implore you to stop is a good sign that he believes that this goal can be reached still.   I will say this, sometimes doctors will float out ideas such as "I recommend adjusting goals"; in order to validate the potential that you may be feeling like stopping and wants to give you that confirmation that its okay.  Also, Dr. R, may just be throwing out the option since he knows that you have reached that 2.5 mark which is still pretty darn good and he knows that stopping will ease the recovery a bit at this point. 

I can remember when I reached about 1.7 inches of growth, that I reported the numbing sensations in my left leg to Dr. M.  Dr. M actually told me, that all should be okay; but if I did not feel up to the tasking that the numbness and tingling will bring, that he recommended I stop.   He was very direct with me.   

All should be just fine.  Is there no callous in the lengthened gap or just little callous?  I have a feeling that your next appointment will provide greater clarity to the situation. Also, you mentioned that you had not walked much since your last appointment. When was your last appointment and are you still standing on your feet and just not walking? Or no standing as well.

Thank you for sharing with the community. If you have any questions or I can help in anyway, let me know.

All the Best,

IFS

Hey IFS,
Thanks for your message. I understand what you mean and it makes sense that drs do this however when the patient repeatedly tells you they do not want to stop, I think it's wise to not bring it up again unless you believe firmly that the patient should stop due to some sort of permanent adverse outcome. Ofocurse he believes stopping will ease the recovery, so do I. The point is that this is a balancing act and all things must be considered, such as  the factors I've outlined above. This surgery is a big sacrifice, not only financial but also mental and physical. It'd be nice if the dr could appreciate that.

Actually for some reason he did not show me the X-rays when I saw him last week. I don't know why and so I don't even know how much callus there was. When I saw him the time before the last, I saw the X-ray and there was little callus on the left and hardly any visible on the right, from my recollection. Before my last appointment which was last week, I had seen him 3 weeks earlier and I truthfully spent very little time standing or walking. Mostly I was in bed. I am seeing him again in 4 weeks so until that time I will be very proactive with walking, and also protein shakes. This journey is stretching wayy longer than I thought it would. But you are right in terms of being so close. I can finish both legs in about 3 weeks (lengthening 3 times a day) once I get the green light to proceed. I'm very curious how all of this will work out. It's funny because the more you want something and the faster you want it, the longer it ends up taking for me!

[tiggy]

Listen.... you will reach your goal ...  you must try to walk with some assistance..
Also plain yogurt... has natural calcium.... I wish you the best...
But please my friend be positive mentally... you will get there ..,

Thanks Panda! I greatly appreciate your encouragement. It can be tough staying positive but just remembering that I've come so far already gives me the extra push to carry on despite the issues I'm having. It will be fine in the end, I can feel it!

[Movie]

Tiggy I really resonate with your mentality and your drive to achieve your goal of 7.5cm at least and you're right! you've spend so much money, gone through so much pain and troubles for you to cut yourself short! You're already going through a rough time! don't quit now ... get your reward from it! don't stop until you succeed brother, you'll be good man I know you will! Lets gooo

[TheAlchemist]

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.

Tiggy I really admire your positive mindset and will to push forward. You are so close to the finish line - this last push will be all worth it. Rooting for you man!

[Ghostfish]

Hi tiggy
sorry to hear that you are having some issue in bone growth.  Focus one walking and standing or other activities, which all help bone grow.  Since you will not grow during this time, your muscle and tissues will recover more.  You will feel better after about a month.  I think you should be able to resume distraction after this.  You are very close to 7.5cm.  After you show Dr. R that your bones grow again, he should let you keep pushing to 7.5cm. Of course, all doctors care about the safety first.  But, your goal is achievable and already very close to you.  Keep pushing and stay strong!

[tiggy]

Thank you guys for all your advice and encouragement. You have been quite active on this thread and I'm grateful for  having you here.

 I will update everyone after I see him in 4 weeks. Until then my regimen will include lots of walking, vitamin supplements, milk, yogurt, and protein shakes. I must do everything in my power to stimulate growth because if I do resort to bone graft surgery after this, at least I'll know I did all I could on my part. No regrets!

[gustavklimt]

At first I didn’t want to say this because I don’t want to be a buzz kill. But I will regret it and hate myself if anything something didn’t went well with you. So at least I tell you what I thought.
I think you should consider what the doctor told you adjusting your goal. Aspeciallly he stress it over and over. Currently your bone growing slow. So the connection between the two bone were weak. If you distracting too much too fast maybe the bone don’t know where to grow.
Distracting 1cm May recover 1 month, 2cm maybe 2 month of recovery, but doing 10cm not necessary mean 10month , maybe 20 month of recovery.
If I were you I would just stop at both 6.6 coz  first 6 is the lucky number in my country. I know you reallly want to reach 7.5 so bad. So I suggest going 7 cm so the case here Could it be that bad between the 0.5 cm? 0.5 wouldn’t gain you much more but you health do and starting your consolidate phase I think will boost your recovery. 7 is also a lucky number in US.
Another Suggestion is distract slower. You are going 1mm per day maybe now go for 0.5 per day. Less pain and you can slowly guide the bone growing the right direction.
So serious work out plan for you is doing PT for 30~50min in two hour.stimulate bone growth.than  Ice 8 min avoid swell. My doctor said we only need to rest up to 1 hour between our PT
But the choice is always yours.
Take slight more calcium , Vietnam d, c,protein shake and magnesium
Wish  you the best bro

[InFullStryde]

Hey IFS,
Thanks for your message. I understand what you mean and it makes sense that drs do this however when the patient repeatedly tells you they do not want to stop, I think it's wise to not bring it up again unless you believe firmly that the patient should stop due to some sort of permanent adverse outcome. Ofocurse he believes stopping will ease the recovery, so do I. The point is that this is a balancing act and all things must be considered, such as  the factors I've outlined above. This surgery is a big sacrifice, not only financial but also mental and physical. It'd be nice if the dr could appreciate that.

Actually for some reason he did not show me the X-rays when I saw him last week. I don't know why and so I don't even know how much callus there was. When I saw him the time before the last, I saw the X-ray and there was little callus on the left and hardly any visible on the right, from my recollection. Before my last appointment which was last week, I had seen him 3 weeks earlier and I truthfully spent very little time standing or walking. Mostly I was in bed. I am seeing him again in 4 weeks so until that time I will be very proactive with walking, and also protein shakes. This journey is stretching wayy longer than I thought it would. But you are right in terms of being so close. I can finish both legs in about 3 weeks (lengthening 3 times a day) once I get the green light to proceed. I'm very curious how all of this will work out. It's funny because the more you want something and the faster you want it, the longer it ends up taking for me!

Good luck, Tiggy.  I hear you, man.   The slower distraction, hence giving the bone some time to catch up will surely help.   If you have ANY questions whatsoever or would like some feedback from me; please DO NOT HESITATE to reach out.  I'm following your story, intently. 

All the Best,

IFS

[tiggy]

At first I didn’t want to say this because I don’t want to be a buzz kill. But I will regret it and hate myself if anything something didn’t went well with you. So at least I tell you what I thought.
I think you should consider what the doctor told you adjusting your goal. Aspeciallly he stress it over and over. Currently your bone growing slow. So the connection between the two bone were weak. If you distracting too much too fast maybe the bone don’t know where to grow.
Distracting 1cm May recover 1 month, 2cm maybe 2 month of recovery, but doing 10cm not necessary mean 10month , maybe 20 month of recovery.
If I were you I would just stop at both 6.6 coz  first 6 is the lucky number in my country. I know you reallly want to reach 7.5 so bad. So I suggest going 7 cm so the case here Could it be that bad between the 0.5 cm? 0.5 wouldn’t gain you much more but you health do and starting your consolidate phase I think will boost your recovery. 7 is also a lucky number in US.
Another Suggestion is distract slower. You are going 1mm per day maybe now go for 0.5 per day. Less pain and you can slowly guide the bone growing the right direction.
So serious work out plan for you is doing PT for 30~50min in two hour.stimulate bone growth.than  Ice 8 min avoid swell. My doctor said we only need to rest up to 1 hour between our PT
But the choice is always yours.
Take slight more calcium , Vietnam d, c,protein shake and magnesium
Wish  you the best bro

Hi there,
Well I appreciate your honest response and I always welcome viewpoints different from my own. However you appear to have mixed certain facts about my procedure. I haven't distracted 1mm per day since about a month post op, in fact I have been distracting .5mm per day or .75mm alternating. The difference between where I am on my left leg and the final goal of 8cm is about half an inch, which is a big deal to me. However, I would never risk long term complications for half an inch gain in height. At the same time, the dr NEVER told me I'd have complications of that sort if I went all the way. His viewpoint is that it is "irresponsible" to continue at the moment given that the gap isn't filling in well. As I've said, if I resort to the bone graft surgery, does it matter if I stop at 6.5cm or 8cm? Surely it does because perhaps he would have to use slightly more bone graft during surgery to stimulate a larger gap, but he stated confidently that all his patients have recovered from whatever non union issues they have had. This leads me to what I believe is a logical conclusion, that I should be ok even if I distract to the end.

I have had another idea come to mind as of late: If growth isn't as good during my follow up, I can stop distracting for another month and give it some more time to fill in and after that I could continue with lengthening. This of course would extend the process further but also has benefits of giving my legs more time to fill in. Depending on the outcome 4 weeks from now, i intend to discuss this option with him before we jump to surgery. I haven't read about anyone doing this in their lengthening journeys but I am curious to know what he thinks. Let's hope I won't even need to bring this up to him as an option after my X-rays in 4 weeks, fingers crossed! Thank you again for sharing your thoughts

[tiggy]

Good luck, Tiggy.  I hear you, man.   The slower distraction, hence giving the bone some time to catch up will surely help.   If you have ANY questions whatsoever or would like some feedback from me; please DO NOT HESITATE to reach our.  I'm following your story, intently. 

All the Best,

IFS

Hey IFS, I wouldn't expect anything less from you. Thanks brother.

[Hamza]

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.

I corrected 1 cm difference between femurs and its been 1 year after the surgery (precice nail2) with dr rozbruch and the xray is showing now a lot of callus formation but most of them are outside the gap (sides).
After seeing him for consultation 2 months ago he said that distraction was lost and i have to put a solid nail and do bone grafting and if i want to re gain the 1 cm so i have to cut the bone again to do acute lengthening or use stryde.

He said i have to be fully charged again and pay another 85000$ for this correction.

I escalated the issue to HSS CEO (Mr Louis Shapiro) and i asked to refund at least what i paid for this malfunctioned nail as i lost the whole distraction and now I am still following up with HSS team via email and i ll post their final decision.

I also visited Dr Betz after that and he said that he can do this correction with solid nail for 19000 euro. he said that the reason of non filling in the gap is that the nail is malfunctioned and not stable.

I have a diary for my case.

Wish u all the best.

[tiggy]

I corrected 1 cm difference between femurs and its been 1 year after the surgery (precice nail2) with dr rozbruch and the xray is showing now a lot of callus formation but most of them are outside the gap (sides).
After seeing him for consultation 2 months ago he said that distraction was lost and i have to put a solid nail and do bone grafting and if i want to re gain the 1 cm so i have to cut the bone again to do acute lengthening or use stryde.

He said i have to be fully charged again and pay another 85000$ for this correction.

I escalated the issue to HSS CEO (Mr Louis Shapiro) and i asked to refund at least what i paid for this malfunctioned nail as i lost the whole distraction and now I am still following up with HSS team via email and i ll post their final decision.

I also visited Dr Betz after that and he said that he can do this correction with solid nail for 19000 euro. he said that the reason of non filling in the gap is that the nail is malfunctioned and not stable.

I have a diary for my case.

Wish u all the best.

Hi Hamza,
Sorry to hear that. You spent a lot of money for 1cm. Was that 1cm imbalance causing you pain or discomfort prior to surgery?

It's interesting that the bone is filling in on the outside as opposed to between the gap but from a logical standpoint, I don't see how a malfunctioned nail could cause that. If you distracted the full 1cm without issue, how can the nail be defined as "malfunctioning" to begin with? I'm not trying to discredit what you are saying, I am simply having a tough time logically understanding the issues

[JsElysianEagle]

I know the nails hold 200lb and I weigh 145

Tiggy - *each* Stryde nail can bear up to 200lbs, so with two nails that's 400lbs. At 145 lbs you're well under that limit so I wouldn't worry too much about the nails being able to take your weight.

[tiggy]

Tiggy - *each* Stryde nail can bear up to 200lbs, so with two nails that's 400lbs. At 145 lbs you're well under that limit so I wouldn't worry too much about the nails being able to take your weight.

Well technically it's 200lb not 400 because as you walk and take one step at a time you put your full weight on 1 leg as you switch your steps. So the dr stil cautioned me that I should be careful even though I'm only 145 and the nail holds 200. This is why he told me to use some sort of support and not walk on my own until bone starts filling in.

[JsElysianEagle]

Ah yes, you're totally right. I forgot about that - thanks for clarifying tiggy!

Btw, may I ask why you decided to go with Rozbruch instead of, say, Mahboubian/Paley/Debiprashad? Just trying to better understand the decision making process that different people go through when evaluating doctors for CLL, as I'm likely goin to go in for this very soon myself...

[tiggy]

Ah yes, you're totally right. I forgot about that - thanks for clarifying tiggy!

Btw, may I ask why you decided to go with Rozbruch instead of, say, Mahboubian/Paley/Debiprashad? Just trying to better understand the decision making process that different people go through when evaluating doctors for CLL, as I'm likely goin to go in for this very soon myself...

Sure thing. He is local to me so it was mostly convenience. I couldn't imagine moving to another state to  unfamiliar territory while going through this surgery. Here I'm about an hr drive away from him and my family is with me. All these things just make it much easier on you both emotionally and physically. I liked him during my consultation so I felt no need to consult with Paley. Had I not felt confident in his abilities, I would've certainly moved to see Paley. I guess I was just lucky to have a highly rated dr doing this surgery who was local to me.

[JsElysianEagle]

Sure thing. He is local to me so it was mostly convenience. I couldn't imagine moving to another state to  unfamiliar territory while going through this surgery. Here I'm about an hr drive away from him and my family is with me. All these things just make it much easier on you both emotionally and physically. I liked him during my consultation so I felt no need to consult with Paley. Had I not felt confident in his abilities, I would've certainly moved to see Paley. I guess I was just lucky to have a highly rated dr doing this surgery who was local to me.

Ok that makes perfect sense. I'm local to Mahboubian so based on that alone I'm hoping he turns out to offer the best of everything else too so I can get it done through him - cheers!!

[tiggy]

Ok that makes perfect sense. I'm local to Mahboubian so based on that alone I'm hoping he turns out to offer the best of everything else too so I can get it done through him - cheers!!

Yea man, honestly if I was local to dr M, I probably would've done it with him as well. But that's something you need to feel when you see him. You'll know if he's the right choice. Good luck!

[Hamza]

Hi Hamza,
Sorry to hear that. You spent a lot of money for 1cm. Was that 1cm imbalance causing you pain or discomfort prior to surgery?

It's interesting that the bone is filling in on the outside as opposed to between the gap but from a logical standpoint, I don't see how a malfunctioned nail could cause that. If you distracted the full 1cm without issue, how can the nail be defined as "malfunctioning" to begin with? I'm not trying to discredit what you are saying, I am simply having a tough time logically understanding the issues

I posted everything in my diary including the xrays.

[tiggy]

I posted everything in my diary including the xrays.

According to Rozbruch, none of the stryde nails that he has used so far has ever malfunctioned. This is what he told me last time I saw him. But I hope you resolve these issues as soon as possible. It's hard enough going through this surgery, so I wish you patience ahead. Please keep us posted on any new developments.

[wannagrowtaller]

Tiggy, bone graft is not that simple, and it does not always work.
Why don't you slow down the rate of distraction? Maybe to something like 25mm per day. Stryde is weightbearing anyway. I think 6.5cm a good gain.

[Great321]

Hey tiggy, we seem to have similar problems regarding bone growth. Good luck!