Limb Lengthening Forum
Limb Lengthening Surgery => Limb Lengthening Patients Experiences => Topic started by: LongLegs on August 03, 2021, 12:34:09 AM
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Just starting my diary here on the forum in the hopes that it may be useful and helpful to others considering limb lengthening in the future also to those who have already started their LL journey I had my LL surgery in LA, California with Dr. Mahboubian just over three weeks ago, first week of July. I spent three and a half weeks in LA, the first few days before my surgery doing hospital Covid test and the two pre-op doctor appointments. The surgery itself was a success, thanks I am sure to Dr. Mahboubian's skill and expertise, as well as to his surgical team. The next few days in hospital were a bit of a blur, being on intravenous medication. I didn't feel excessive pain in my legs, maybe a 3-4 at most. I did feel nauseous most of the time. I couldn't keep food down, and had lost my appetite anyway. When PT guy came, I was able to take a few steps on the second day and use walker without bearing all the weight on my legs, and on the third and final day in hospital I could take yet more steps on the walker and navigate stairs. Once I was discharged and back where I was staying in LA, I began to feel more alert especially as I was off the IV drugs. The next few days I made progress in that my appetite began to come back, I slept better, pain levels were low and never higher than a 3 at most. I was able to relax, do some minor PT on my legs, lots of ice packs, and then my appointment with Dr. Mahboubian and ERC/Nuvasive representative. Right now, I am back home and into my third week of lengthening and so far so good.
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I just wanted to add the various things I am doing to alleviate any leg pains. Being able to have baths with both legs in hot water every night works great. Not only does it get rid of any pain but it allows me to sleep really well too. I also use a hand held digital massager on my legs which helps not only with pain relief but gives me a deep tissue massage and helps with blood circulation. Stretches and exercise also help of course, and walking around with the aid of a walker. I'm also keeping my legs elevated when lying down. If anyone has any other tips here, please pass them on.
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Hi man, it's nice to have another Precice diary, I have surgery next month. How safe do you feel about the nail? I'm a bit paranoid about bending or breaking it while using walker or making a mistake during transfers. I do hope to get the "big" nail that takes more weight.
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Thanks for sharing your experience. My question is what was your height pre surgery and what is your goal?
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@long legs congratulations on a successful procedure.
What was you body weight going into surgery?
How many daily PT sessions do you receive with your treatment?
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Hi man, it's nice to have another Precice diary, I have surgery next month. How safe do you feel about the nail? I'm a bit paranoid about bending or breaking it while using walker or making a mistake during transfers. I do hope to get the "big" nail that takes more weight.
70-75kg maximum for the 10.7mm-12.5mm precise 2 nail.
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Congratulations LongLegs! Excited for you. I know COVID is disrupting things again, but if you can, highly recommend getting in the pool and walking/stretching in there once Dr M clears you for that. The pool has really helped me out and breaks up the monotony of stretching on your bed all the time. Here's a doc of stretches you can do in the pool that I've used: http://www.drlanderson.com/exercises/knee-Pool-Stretches.pdf
Take care!
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Another restful night's sleep. It's great to have 0-1 leg pains. Stretching and hot water really help here.
Hi V21 ~ yes, seems like abundant recent Stryde diaries out there. I was looking for a recent Precice diary with Dr. M. but had to search a while back. Now I am following a few LL patients that had Precice done here in The States but not with Dr. M, and who are now in the consolidation phase. Where are you having your surgery done? Yes, bending or breaking the nails was and still is a concern of mine. Although it seems like all the doctors want their LL patients using the walker vs. wheelchair from day one. However this will depend on weight. PT guy at the hospital showed me how to use walker with min weight on my legs. The more one continues to lengthen, the more one is at risk for bending/breaking the nails. Getting the bigger nail will depend on your femur/bone size.
Hi Thorfinn ~ I was 170 cm and my goal is to gain the full 8 cm.
Hi Stretch ~ thanks for the info on large Precice nail size. I got the 12.5 mm nail so can bear weight up to 75 kg per leg. My weight was 150 kg going into surgery. I have probably lost a few kg since though. But my appetite is coming back which is great as I need to eat more for bone growth and healing and just for overall health. I am eligible for max 4 PT sessions per week according to MD. Some Stryde patients did their own PT, and did really well (that's when I was following Stryde diaries last year). Currently, due to Covid/Delta and waiting for insurance to get back to me on coverage, I am doing about 3 hours of my own PT per day, plus lots of steps on the walker.
Hi ab608 ~ congratulations to you too! I have been following your diary for a while and the pool workouts sound really beneficial. Is consolation pain free? I will check with Dr. M at my next appointment about water workouts. And thank you for the pool stretches, that is super useful. Yes, looks like a fourth wave is now looming. The hospital where I had my LL surgery recently rebulit their Covid unit to cope with the rise in hospitalizations due to Delta and unvaccinated cases. Right now I seem to be doing the same exercises and stretches over and over, can't wait to shake it up some more and progress onto others. Working on my quads and hamstrings but need to work more on hips and glutes. And knees. How are you doing now you're in consolidation? Soon you'll be back to regular walking! Now that is exciting to be heading for the finish line.
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Hey man, I have surgery with Giotikas in Greece. It seems I would get the big one, because I have big bones, but bending the nail still terrifies me. I'm still practising chair to bed transfers at home lol. Btw, when you say 75 and 150 kg I understand you meant pounds¡ Precice 2.2 definetly can't take per leg. Anyway, it's good to see you are doing fine. Keep strong¡
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Hi, I managed to bend my Precice 2.2 (cracked at the midpoint collar), it was at the end of lengthening and at full 8cm extension, i weighed ~ 60kg at the time. Most likely the break was not due to careful weight transfer from leg to leg whilst walking without crutches (which I did often), but more likely due to me chasing a 3 year old around....
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Precice can hold up to 75 pounds not kg, and when you walk you put all your weight on 1 leg.
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nice LongLegs, you're in good hands with Dr. Mahboubian for sure! keep us posted
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@ long legs nice you got the largest nail and your weight 68kg/150lbs is within the tolerance for the nail. 178cm will be a significant height difference.
@v21 what’s your body weight? My body weight is 75kg/165lbs and from scans It seems I can use the 12.5mm nail. I would be bound to a Walker indoors and wheelchair outdoors. Giotikas has anti gravity treadmill but I’m not sure if they offer hydro therapy.
@krusty 75lbs per leg
@aim high Ohhhh did you feel the nail break. What did your surgeon recommend, did you have to change the nail? You had an ideal weight at the time also.
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@ long legs nice you got the largest nail and your weight 68kg/150lbs is within the tolerance for the nail. 178cm will be a significant height difference.
@v21 what’s your body weight? My body weight is 75kg/165lbs and from scans It seems I can use the 12.5mm nail. I would be bound to a Walker indoors and wheelchair outdoors. Giotikas has anti gravity treadmill but I’m not sure if they offer hydro therapy.
@krusty 75lbs per leg
@aim high Ohhhh did you feel the nail break. What did your surgeon recommend, did you have to change the nail? You had an ideal weight at the time also.
I have a big frame, my "normal" bodyweight at 1,72 was 85 kg... However, I started a strict diet and stopped heavy lifting on legs, and now I'm at 74, maybe can cut to 72. As far as I now, Giotikas does not offer hydrotherapy, as he only told me about the treadmill. However, today I have a meeting with him in order to consider doing G Nail instead of Precice, so I will ask him about that and I will report back¡
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I have a big frame, my "normal" bodyweight at 1,72 was 85 kg... However, I started a strict diet and stopped heavy lifting on legs, and now I'm at 74, maybe can cut to 72. As far as I now, Giotikas does not offer hydrotherapy, as he only told me about the treadmill. However, today I have a meeting with him in order to consider doing G Nail instead of Precice, so I will ask him about that and I will report back¡
Yes I also adopted a similar training regime, slimming down is not easy for me and I was planning to boil down to 60kg region lol. September seems to be the expected date I have been given by a few clinics for precise but, the "Guichet" nail under the care of Giotikas is now of interest so let's see.
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No, I didnt feel any breakage or abnormality, actually the rod had ~ 5 deg bend at the mid collar, I was tempted to just keep consolidating but the collar was compromised and could have completely snapped, and that would have been painful, disfiguring and very hard to remove the two halves...
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Hi V21 ~ good luck on your LL journey! I have heard good things about Giotikas. Yeah ha! if only it were 75 kg per leg!
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Hi AimHigh ~ definitely the scariest thing I have read!! So glad that you are at the 8 cm mark though. Were you walking unaided while lengthening? And the worst is that their was no indication that the nail was bent or broken. Except by xray? I hope you are good now.
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Hi Movie ~ how are you? Great diary! I followed you for months, until Precice became the main option when Stryde went off market. Yes, Dr. M is really great! I do have one question for you ~ did you do your own PT? Between Covid/Delta and my insurance not confirming PT coverage, I am doing my own PT for now. Mainly hamstrings, quads, glutes, hips and knees. Any tips or suggestions? Congratulations on going through LL journey and coming out on top the other side!
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Hi Stretch ~ yes, fortunate to get this nail. Hoping to use walker throughout and not have any adverse incidents (like AimHigh did!). Good luck with your LL journey!
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Hi Krusty123 ~ hospital PT showed me how to use walker without bearing all the weight on my legs, also how to turn safely. It is a concern though, especially after hearing AimHigh's story!
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Had my first drive today. Now that my caretaker is gone I have to get around a bit more on my own. It was only 15 minutes but it's a start and so far it was only getting in and out of the car that was awkward but not really painful.
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Hi Movie ~ how are you? Great diary! I followed you for months, until Precice became the main option when Stryde went off market. Yes, Dr. M is really great! I do have one question for you ~ did you do your own PT? Between Covid/Delta and my insurance not confirming PT coverage, I am doing my own PT for now. Mainly hamstrings, quads, glutes, hips and knees. Any tips or suggestions? Congratulations on going through LL journey and coming out on top the other side!
I did my own PT yes! thanks brother I'm glad my little vlogs were able to help somebody. drop me a PM I'll help you out with some self PT
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What made you decide on Dr. Mahboubian and are you glad that you went with him? I am still undecided about what doctor to choose also undecided whether to go with Precice or wait it out for Stryde to return.
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Hi ActionSpeaks ~ I wanted to have my LL surgery in The States, plus it was easier to make arrangements for everything domestically rather than internationally especially during the pandemic. And it was kind of unknown what covid waves or variants any place might be experiencing while I was there for surgery and then post-surgery. After reading various diaries and comments by past and present patients of Dr. M’s, he came across as very skilled and experienced, with safety as a top priority. At the consultation he seemed very caring and genuine as well as knowledgeable, and answered all my questions and helped put my mind at ease. Plus his Height Lengthening Team have been really helpful throughout and on top of everything: Amanda here was a huge help to me and a constant communicator since the start. Looking back, my surgery was a sound success, I was very well looked after in hospital for those few days post-surgery, no leg issues so far, minimal pain levels and small scars, and I am getting taller and feeling better with each day. I am fully confident that I made the right decision in going with Dr. M. Also, I am really glad that I went ahead with Precice rather than wait around for Stryde to return as this may have been a long long wait.
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Now using the walker all the time and getting in a few hundred steps a day. Moving slowly, one leg at a time. I read here somewhere that some Precice patients were doing a slow hop on the walker but one leg at a time works for me.
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Dr. Mahboubian sounds like a good choice. Not sure if cosmetic and elective surgeries will be postponed soon again though, looks like this is already happening in some hospitals. You got in before the latest wave so the best of luck to you. Good timing. I do have some questions if I can DM you?
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I hope everything is progressing well for you. By my estimation you should be finished lengthening by the end of next month at least, depending on how much you are lengthening each day. Thank you for all those tips and advice too. very sage. How are you coping now? I haven't read or heard anything definite about Stryde's return either and like everyone else have started following Precise diaries more closely because it looks like to be that or something like Betz or to wait around indefinitely. I really thought we had seen the highest point of covid early this year but it is now back worse than ever. Various states and hospitals have already halted elective and cosmetic surgeries. In my state not only are the ICU and regular hospital beds almost full but there is a dire medical staff shortage. I hate to postpone everything yet again. I was looking at this Fall but am now more inclined to wait for Spring 2022. My original plan was Spring 2021 with Stryde but now even Spring 2022 with Precise will do.
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I will be finished lengthening this month then onto consolidation. I will have to check out other Precice diaries here for strengthening exercises, I have been mainly focused on stretching exercises until now. I was knee deep into a project for the last few weeks (online, IT) so have been MIA from here. Now that I have resurfaced I am looking at current news again and it looks to be still the same with regards to covid. I haven't seen anything about a turning point beyond speculation. No news from me, still lengthening, pain levels very manageable, back to online work 100% and then some. Can't wait to enjoy the weekend nights again!
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I will be finished lengthening this month then onto consolidation. I will have to check out other Precice diaries here for strengthening exercises, I have been mainly focused on stretching exercises until now. I was knee deep into a project for the last few weeks (online, IT) so have been MIA from here. Now that I have resurfaced I am looking at current news again and it looks to be still the same with regards to covid. I haven't seen anything about a turning point beyond speculation. No news from me, still lengthening, pain levels very manageable, back to online work 100% and then some. Can't wait to enjoy the weekend nights again!
Wow congrats on what you’ve accompanied so far!
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In consolidation at last!! I can already feel the difference in my legs, not lengthening them every day. Getting used to not having to work everything around my ERC times which in itself is great! I am having longer and better sleeps now. Which suits me especially as my work is so busy all the time now. Lucky for me it is all remote with just a few online video conferences now and then. I try and do my own pt every day, as well as going to the pt clinic a few times a week. Between work and other things, I have less free time for carving out clinic time and my own pt is going so well. I think I will cut down on the clinic, as I am doing so much of my own pt and stretches and exercises plus my own water therapy (usually hit the swimming pool at least once a week which is working out really well so far, and plan on increasing that to two or three times soon). Being in the water is really beneficial. And I have read other Precice diaries and incorporated some of their exercises into my own routine now. Other than that, off all meds. but still taking vitamin D3, calcium, bone building supplements and my regular, daily supplements like multivitamins and fish oils. Eating lots of healthy foods plus protein too, more than I did pre-surgery.
Thanks Thorfinn - thanks for the well wishes!
If anyone has any specific questions please feel free to DM me. It seems that is where most of my forum writing is done anyway.