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Author Topic: Two stage femur CLL, Monegal  (Read 856 times)

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Milko

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Two stage femur CLL, Monegal
« on: May 16, 2018, 10:49:24 PM »

So it's the night before my surgery and i'm quite tense.
I am in my early 30's. about 169. Scheduled for my first leg tomorrow (unilateral)
Am quite tense about it since my flexibility isnt' the greatest. Dr M will do an ITB release and abductor muscle release. which will hopefully help somewhat.

This forum has helped me a lot so i hope i can return a little. But right now am just too stressed to write anything coherent.
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concernedmom

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Re: Two stage femur CLL, Monegal
« Reply #1 on: May 16, 2018, 11:23:33 PM »

Good luck.
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Android

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Re: Two stage femur CLL, Monegal
« Reply #2 on: May 16, 2018, 11:24:50 PM »

Hey Milko. Don't stress out too much, I recommend staying off the forums until you're post-op. I have a feeling that you're going to get some negative comments in here, you don't need that right now. Good luck!
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5'4" and 1/4" (163.2 cm) | United States | early 30s | Cross-lengthening with Dr. Solomin & Dr. Kulesh

0184946

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Re: Two stage femur CLL, Monegal
« Reply #3 on: May 17, 2018, 01:03:11 AM »

Good luck my friend and dont worry. The surgery itself wont kill you.
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Petite888

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Re: Two stage femur CLL, Monegal
« Reply #4 on: May 17, 2018, 03:05:11 AM »

Good luck Miko. Rooting for you! :D
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Americanfootball

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Re: Two stage femur CLL, Monegal
« Reply #5 on: May 17, 2018, 09:45:34 AM »

good Luck my friend👍You are in the best of hands. I hope I will be soon there. Stay Strong!
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Milko

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Re: Two stage femur CLL, Monegal
« Reply #6 on: May 18, 2018, 02:26:55 PM »

Quick update - happy to report the surgery is behind me and all is well. No pain yet (but still with an epidural catheter).
Really like the conditions here in the clinica. Big rooms, all clean and modern, very professional staff, decent food and cute nurses.

One unpleasant experience was my fault. I asked the anesthesiologist not to have a catheter placed in my bladder and that was a bad idea - taking a mental trip to all the fountains and waterfalls in the world couldn't help me relax my sphincter. I eventually conceded and asked for a catheter to be inserted. Would have really preferred to have that done while sedated. 
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zantac20

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Re: Two stage femur CLL, Monegal
« Reply #7 on: May 18, 2018, 09:02:06 PM »

good luck Milko. I will be following this diary.
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Android

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Re: Two stage femur CLL, Monegal
« Reply #8 on: May 18, 2018, 09:04:21 PM »

So far, so good. Let this be an important lesson for those that fear the catheter!
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5'4" and 1/4" (163.2 cm) | United States | early 30s | Cross-lengthening with Dr. Solomin & Dr. Kulesh

wishadream

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Re: Two stage femur CLL, Monegal
« Reply #9 on: May 20, 2018, 02:16:38 PM »

Hi Milko. Because I have considered Dr Monegal for my surgery, I follow your dairy carefully. We all appreciate if you update your dairies regularly.
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Milko

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Re: Two stage femur CLL, Monegal
« Reply #10 on: May 20, 2018, 08:03:33 PM »

Happy to help whoever is following my journey, but unfortunately I do not have the time to devote for a detailed account as I am actually working here from my bed. If anyone has any specific questions I'd be happy to help.

Day +3
Yesterday, two days after the surgery, they took out my epidural. Without the epidural my pain got to about 4/10 at times, still very bearable and responsive to mild pain killers. The sensation is mainly that of the pressure from the compression dressing. Sleep was very good though, easily got 7 hours and when I woke the pain completely calmed down and I'm currently at 0/10 most of the time.

Today I  also used the CPM, my range isn't great compared to other diaries I read (I reached about 75), but i feel the limiting factor is again the compression dressing, and when I reach the higher angles the feeling is that of a tourniquet on my knee, not a feeling of stretching.

I also walked for the first time with crutches today. Feels great to be able to wonder about my room, go to the bathroom. Just a few minutes ago I walked over the see the crowds at the barcelona game in the camp nou (the clinic has a great view). The walking itself is a bit slow, and I do still have a limited range of motion in my operated leg due to swelling, but the independence is priceless! Tomorrow Dr. Monegal agreed to replace my heavy bandage with a flexible dressing so I can shower (and hopefully also regain a bit more range of motion). After I walk I usually experience some pain but very mild, about 2/10 which quickly calms down.

About the pain- I'm really pleasantly surprised at how mild it is. I've only been taking paracetamol (acetaminophen) and metamizole (which is an over the counter non-opoid drug here, and from the research I've read for good reasons). Very happy I don't need to use any of the big-gun (or even medium gun) pain killers yet as my lucidity is extremely important to me right now as I am working.


Dr. Monegal himself has been great so far, he came to visit me everyday and spends a while with me.

I really hope my experience continues to be uneventful as I plan (really 'need' actually) to go back home in a couple of weeks and finish the lengthening there.
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Milko

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Re: Two stage femur CLL, Monegal
« Reply #11 on: May 28, 2018, 11:56:42 AM »

+11 days since surgery

So my stay the clinica was fine. Resting pain was about 2/10 after removal of catheter for a couple of days, than down to 0/10 (where it is today).
However I did have quite debilitating pain while walking for the first few days due to swelling building up. It has been steadily improving, and today I only experience the pain after longer walks and using the bike.
Pain at night is an issue though, usually no pain while falling asleep, only heaviness in the operated leg, but I found I am waking up at 6 am every day in pain, very mild and yet annoying due to lack of sleep. Tried to vary my lengthening schedule with no changes thus far.

The MIC is amazing. Employees are very kind and was happy to meet some fellow lengtheners. Rooms are great. I use seating elliptical there twice a day and I've been feeling the strength is back in my operated leg. am flying back to my home country soon. Wish I could stay here more.

Dr monegal himself has been very caring. He is very busy so not always available on the phone but always gets back to me when I have questions. And he visited me every single day at the clinic. I feel I am in good hands and hope the positive experience will continue.
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Milko

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Re: Two stage femur CLL, Monegal
« Reply #12 on: September 26, 2018, 09:25:37 PM »

Sorry for not updating at all. Am extremely busy with work. Here's an update on my current progress:
So since I went unilateral lengthening I was in no rush with the lengthening. Was lengthening at 1 mm for the first few days and then went down to 0.8 and took several brakes.

The experience hasn't been almost pain free for me as some other Dr. Monegal patients report. But not bad at all. Had mainly medial knee pain when waking up at the morning and other than that it really varied all the time but pain appeared mainly at night but was never terrible or even bad. I did however take 200 tramadol daily (24 hour release) and that might have helped. All in all I would say there was a constant discomfort when immobile, and the worst pain was when waking up around, at around 5/10 (almost always medial knee, I think it was from the locking screw and not muscular pain).  Considering some LL stories I've been reading I feel very lucky to have had only mild pain.

You probably notice that I am using past tense. About a day after I stopped lengthening at around 78 mm (about a week ago) the pain stopped completely (including the knee pain). Only discomfort I feel is muscle tightness when immobile for long periods of time. Am currently using one crutch, and hopefully will go unaided in a couple of weeks (and then straight to stage 2 at the beginning of November). My callus is good but not phenomenal so it allowed me to lengthen at a slower pace.
 
Sleep was ok throughout the process. Again, perhaps thanks to the tramadol. My problem was actually never lack of sleep but I would oversleep constantly. I am not sure if the drugs are to blame for that (I also take ambien for sleep, that's unrelated to the surgery though, had always been on that), as I tend to display such sleep patterns whenever I let myself go on long vacations.

One thing that I did a bit differently than most patients, and I felt worked out great for me, was that I really broke up the lengthening sessions as much as possible. I did that on the advice of a fellow lengthener at the MIC (thanks!) based upon some interesting research. In short, they used an automatic high frequency distractor  (which distracts 1/1440 mm every minute) on one limb, while the other limb was lengthened normally at 4x0.24 a day.  The research shows that soft tissue adaptation is improved considerably with the high frequency method (which makes some sense as it emulates normal growth best).

So since I was home and as it's so easy to lengthen with fitbone, I lengthened ideally once (0.03 mm) every 30 minutes. I had no considerable nerve pain, no gradual reduction in ROM (altough knee ROM was reduced by surgery and has not recovered much yet, at around 100 now) and had no muscle cramping.  Please note that I had horrible flexiblity before the surgery, and yet I feel that my ROM is 100% on my hip joint and only the limited ROM in the knee bothers me a bit, but it has been only about a week since I stopped lengthening. the paper is called  "High frequency distraction improves tissue adaptation during leg lengthening in humans" by Gudrun Trøite Aarnes if you want to discuss it with your doc, recommended read anyways.

So my overall experience has been good so far, not too much pain, Dr. Monegal has been very nice and responsive (and I can be quite annoying), and I am very happy with the height. I actually feel that if my legs were equal that I could walk almost normally right now, I feel that the limp I have is more due to the excessive lifts I have on my unlegnthened leg.


Hopefully the good experience continues.  Will try to update after my second surgery.

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