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Author Topic: Two stage femur CLL, Monegal  (Read 539 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 | Pre-CLL

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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Goodfootballer7

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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 | Pre-CLL

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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