Quote from: tiggy on August 12, 2019, 09:05:00 PMHey 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
Rozbruch- Internal Femurs with Stryde
Quote from: gustavklimt on August 13, 2019, 01:56:28 PMAt 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
Quote from: InFullStryde on August 13, 2019, 02:04:45 PMGood 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.
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.
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.
Quote from: Hamza on August 14, 2019, 06:04:03 AMI 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
Quote from: tiggy on May 30, 2019, 05:57:12 PMI 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.
Quote from: JsElysianEagle on August 14, 2019, 06:34:28 PMTiggy - *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.
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...
Quote from: JsElysianEagle on August 14, 2019, 08:27:27 PMAh 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.
Quote from: tiggy on August 14, 2019, 09:31:34 PMSure 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!!
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