Update:(day 27 post lengthening and 43 days post:
the bads: I have lazed around the entire week with regards to replacing bandages and excercising. My dorsiflexion has reduced a good amount, a couple of my pin sites looked bad(some discharge). I have restarted antibiotics and daily changing of bandages. I am also starting to excercise more frequent.
To the future external tibial LLers, Change your bandages whenever you sweat a bit too much. Although it was only 4 days since I last changed(i was told to change it biweekly, so 4 days should not have been an issue), i could attribute the bad pinsites to humidity, and sweating. Its a little bit better now. The thick pins from the mid tibia and downwards were most affected.
I hope, I could get back to 10days ago version of myself :/.
PS. I have turned 2.1cm so far, not noticeable yet though :/
It's been a little while.
How are you doing, FTN?
I hope things are well.
update: 58 days post op/ 44 days since lengthening
gain: 3.3cm, xrays taken at 3.2 which measured ~3cm actual.
goods: Met Dr Pili, my xrays showed decent callous and my mobility is still good.
bads: A few pin sites were not so clean, was suggested to bathe with a clorine compound(euclorina) and follow the regular cleanups. I feel a bit of knee bending already, specially on left leg. Any tips/excercises would be greatly appreciated. Also Dr Pili mentions I have started to develop mild equinus, mostly require undergo ATL next month.
Would upload the xrays soon.
@former LLers/current LLers, Please help me with some video links for knee bending and equinus while on frames. Almost all videos on youtube seem not posible/risky to perform with Ex frames.
Hey ftn, congrats for your 3cm:)
I'm happy that the oozing and swelling problem has stopped! What is this knee bending thing?
My surgery with Dr. Giotikas is in October. I'm a bit nervous now. Can you please answer a few questions?
- What are the most difficult things to do with frames in your everyday life?
- Is it possible to climb a few staircase steps?
- How long do you have to wear the frames in total and will you have to walk with crutches the whole time until then?
- Do you go outside with the frames a lot, if yes, how do strangers/people you know react and what do you tell them?
Quote from: Great321 on June 23, 2018, 08:34:03 AMHey ftn, congrats for your 3cm:)
I'm happy that the oozing and swelling problem has stopped! What is this knee bending thing?
My surgery with Dr. Giotikas is in October. I'm a bit nervous now. Can you please answer a few questions?
- What are the most difficult things to do with frames in your everyday life?
- Is it possible to climb a few staircase steps?
- How long do you have to wear the frames in total and will you have to walk with crutches the whole time until then?
- Do you go outside with the frames a lot, if yes, how do strangers/people you know react and what do you tell them?
Thanks, buddy. I do have swelling though..on feet not ankles now.
Knee bending is when you cant straighten the legs fully around the knee.
difficult things: having to deal with swelling after you sit for long...and sleeping with legs stright, sometimes there is pain that wakes you up.
climbing stairs is doable..i climb a lot of stairs myself.
I would wear 2months extra to avoid subsidence..so for another 12 months, assuming normal consolidation.
People stare when you are doing externals, you would get used to it eventually.
Good luck with your surgery.
xrays:
http://imgur.com/gallery/zHKjStf
pardon the lighting, i dont know if you can see the callous cloud.
regarding why I dont post much pics these days, coz there is not much difference. Would post a video and pic after ATL when I do it if totally required. But if I post anything that reveals my body/clothes) I would delete em soon too. Xrays would remain though, or something I dont find as a source of identity :p
Quote from: fivetenneeded2016 on June 23, 2018, 08:45:43 AMThanks, buddy. I do have swelling though..on feet not ankles now.
what does Dr. Pili say about the swelling? Is there a way to treat this?
QuoteKnee bending is when you cant straighten the legs fully around the knee.Have you contacted Dr. Pili about the knee bending?
Quotedifficult things: having to deal with swelling after you sti for ling...and sleeping with legs stright, sometimes there is pain that wakes you up.
How bad is the pain so far? Do you have to take a lot of pain killers and for how long can you normally sleep?
Quoteclimbing stairs is doable..i climb a lot of stairs myself.When you climb stairs or just walk with crutches are you very cautious to not put too much weight on your feet or are you allowed to put weight on your feet for a short time? Do the crutches mostly help for not falling down? Or are they actually there to prevent you from putting your whole weight on your feet? I'm just wondering since the frames are advertised as full weight bearing.
QuoteI would wear 2months extra to avoid subsidence..so for another 12 months, assuming normal consolidation.
People stare when you are doing externals, you would get used to it eventually.
Good luck with your surgery.12 months in total or 12 months on top of for example 7 months...so in total 19months with frames? How much do you want to lengthen again?
Quote from: fivetenneeded2016 on June 23, 2018, 08:51:24 AMxrays:
http://imgur.com/gallery/zHKjStf
pardon the lighting, i dont know if you can see the callous cloud.
regarding why I dont post much pics these days, coz there is not much difference. Would post a video and pic after ATL when I do it if totally required. But I would delete em soon too :p
That's okay. A few of us can watch them and attest they were there at some point in this diary.
Thanks for your contributions, and I hope you can get the bending and ankle problems solved without ATL.
Quote from: Great321 on June 23, 2018, 08:58:55 AMwhat does Dr. Pili say about the swelling? Is there a way to treat this?Have you contacted Dr. Pili about the knee bending?
How bad is the pain so far? Do you have to take a lot of pain killers and for how long can you normally sleep?
When you climb stairs or just walk with crutches are you very cautious to not put too much weight on your feet or are you allowed to put weight on your feet for a short time? Do the crutches mostly help for not falling down? Or are they actually there to prevent you from putting your whole weight on your feet? I'm just wondering since the frames are advertised as full weight bearing.
12 months in total or 12 months on top of for example 7 months...so in total 19months with frames? How much do you want to lengthen again?
1. Dr pili said swelling is normal. to treat it we must elevate our legs. However, another patient under Pili who has a PT suggested a massgae technique which i would try to reduce the swelling quickly.
2. Knee bending is due to tightness in achilles tendon.
3. Sleep is fine, no pain no painekillers in day. only at night while sleeping there is pain which wakes you up. I try to sleep for 7 hours atleast, undistrubed. the key while sleeping is not to keep the legs straight i found. otherwise it pains a lot.
4. while climbing stairs I keep on crutch on the next step, put my full body weight on that as i bring the other foot to that stair. only weight bearing part i leverage is while wahsing both hands on a basin, while keeping the crutches aside.
5. i meant if my dovtor says i can take my frames offI would take it off 2 months later.
6. I would lengthen as much as I can till my doctor permits after checkups.
How do you manage to go to office..in specifics:-
-do you take a bath regularly?
-do you use a cab for pick up and drop?
-do you use wheelchair apart from crutches? Is it possible to use only wheelchair?
-what if your team goes on outings?
- what if you have to go to meet outside client?
-what if you have to meet your manager?
-do you lengthen while being in office?
-you must be taking medications multiple times in a day is it possible to do it there?
-what about PT there?
- how much do you walk per day in total?
- has your doctor given any advice regarding office going?
-your manager look at you with sympathy or otherwise?
-can you work without any issues I mean as you did during your preCLL phase?
A lot of questions I know, if you could answer it would help future CLLers a lot. Thanks in advance?
You must be logged in to post a reply.