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Author Topic: Natalie's Fulkerson / TTT With complications! (Open Patellafemoral Realignment)  (Read 6276 times)

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Offline lululocket

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Hi Red!

You're so close to me compared to all these Americans - I'm in London! I'm 23, and had a TTT on my left knee back in March. I need the other one done too, and like you am feeling that urgh can I be bothered dismay.

First thing, be really careful on those stairs! I live at the top of two flights of spiral stairs (joy!) and my darling mum/dad/brother would walk backwards downstairs in front of me for the first two months, I was so scared of falling. I had some wobbly moments, but none of them ever really had to catch me.

As for the NHS pffff. I had a really bad dislocation (stayed out 2.5 hours before we managed to get to AnE, I quote the doctor 'wow, you're still conscious'). They told me not to move the leg at all under any circumstances....so I didn't move it for four weeks whilst I waited for a physio appointment. When I saw her, she started asking about what it looked like when I took the brace off and moved it every HOUR to prevent muscle atrophy - that is a bad lesson to learn, I rebuilt an entire calf that had become as thin as my ankles, let alone the quads!

Lesson to learn - don't waste time with a bad physio when you've got doubts. I did it again this time, since my surgeon recommended him I didn't use my judgment and trust the bad gut feeling I had, but after 4 months I fired him, and one look at the new guy's face when I described my previous regime said it all. I've been lucky enough to go private via my work insurance, which obviously has made changing physio much easier, but try your GP. You don't have anything to lose. There's also a section on rehabilitation on this website which is worth looking at, even if just to manage your expectations. I remember when rebuilding that really small leg, suddenly certain exercises felt really good, and I did them obsessively, starting to enjoy some of them, and that is when my leg suddenly came back to life. For me, in the earlier weeks the only thing I liked were ankle pumps, so I did lots of those. I hated quad sets, but looking back it was the only way to get my sorry brain around the idea that my kneecap should MOVE, not stay still and be left alone as I would prefer! My latest physio says that research shows most muscles won't grow unless you do 100 reps a day on them, let that motivate you! Also arnica is amazing for bruises - send the boyfriend to Boots for some cream. I had pretty green and yellow all over my leg down my shins.

Like you, post surgery I had shocking black thick hair, and feet that were freezing cold but also swollen and disgusting. 8 months on my foot is looking almost normal again, keep hope! I've had to give up on some of the ballerina pumps I was wearing because they're too big for my feet now the swelling is going and fall off in the street! And the hair is not totally normal, but much better than the early days. I've still got drier skin than I used to though. Good luck with the flexion, at 90 degrees it is just magic, you can suddenly sit like a human being again. I worked from home for 6 weeks, and was moving positions all day trying to prop it up, but the best would be straight for half an hour, then letting it hang off the edge of the chair for half an hour. I also wished I'd massaged it a little, or just stroked the area to get it used to touch and warm it. Also, don't know how your scar is, but mine is getting to be rather beautiful, after lots of vitamin E cream.

Keep going!
Lulu
2003 RK dislocation
multiple sublaxations (10+), both knees
2007 LK dislocation
03/2010 TTT on RK
03/2012 TTT on LK

Offline red1702

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Morning Ladies :)
I haven't updated for a while but I'll try to cram everything in from the last week.
As you know I went to see my OS on Friday, although I didn't actually see him at all, I saw someone totally different who I'd never met before, and so who I assumed would know nothing about my case.
When he examined me, he immediately started asking questions like "Do you get burning pain? Can you describe it for me?" "How long has the hair been growing like this?" "Do normal painkillers work?"
Having had a heads up from Kat, I knew exactly what he was about to tell me. He told me I had Nerve-ending Hypersensitivity , or more commonly known as Complex Regional Pain Syndrome. He said the stage of the condition isn't yet serious enough for medication (thank God, I take enough pills a day as it is) but he immediately took me out of the brace to prevent further muscle wastage, gave me an intense exercise regime which involves 4 hours a day of bending, stretching, rebuilding muscle and massage to increase tolorence of touch. Needless to say, I left this stranger's office feeling extremely satisfied and grateful that I finally has a diagnosis for all my pain.
I see my physio tomorrow, but I am already at 90 flexion after a nifty little trick he taught me, where I top-tap whilst sitting in a chair and after five minutes of that, press down and drag back on my heel, and keep on tapping in the new position for another five minutes. I managed to get an extra 10 degrees in 10 minutes.
I am down to just one crutch when I go out but mostly I don't use either one. My balance is improving massively day by day and I can even manage to climb stairs normally - one foot on one stair. Coming down is still the same though, as it's much more difficult for me to keep my balance.
I've started taking multi-vitamins and I've upped the protein in my diet; I'm even considering protein shakes. I'm cutting the sugary crappy stuff out of my diet as of today - my body doesn't need any extra weight right now!
My absolute acheivement of the whole two months is the fact that today, I am sitting wearing my skinny jeans.
YAY ME!!!
What a difference a few weeks makes. If I can do it, you guys can too!
Just a quick note to Kat - I had a panic attack in town when faced with a wet floor. And became extremely nervous with crowds of people. You are not alone xx
xxx

Offline duckie857

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Natalie,

I'm sorry to hear that you have CRPS but glad to know it's not anything too extreme and that you're on the mend. It sounds like you got a big morale boost knowing that you had a valid diagnosis for you prolonged pain. Being out of the brace is lovely, just be careful :)
'04 - '10: Years of dislocations & subluxations

01/13/2010 - LR, MR, VMO Advancement
10/06/2010 - Fulkerson Osteotomy (TTT)
09/02/2011 - Scheduled MPFLr

Offline Kat_Walk

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Oh Nat, I'm bummed to hear you have CRPS, but to be honest I'm really not surprised, given what you wrote about your symptoms. Thought I would have thought by what you described about the burning pain keeping you up all night, that would call for some medication. My Neuro put me on Lyrica and Amitriptyline, my godsend, I tell you. I was waking up in pain every hr all night long, I'd just drift off then I'd wake up to burning pain. I still cant handle clothes or blankets on my leg, its horrible. The Neuro said its vital that the sleeping pattern is restored, as it helps with the healing and getting over the CRPS or at least getting it under control.

I can totally relate to leaving the specialist with such a grim diagnosis but being happy about it. My motto was, if they know what it is they can fix it!! Hope you are feeling better and thanks for the encouragement about the panic attacks, I still feel like a dill about it.  :)

PS. great news about the ROM! I'm very jealous!!
12/9 - Substantial Subluxation of L patella due to a fall
12/9 - 2/10 - PT for injury
3/10 - PT rehab (non responsive)
5/10 - Referred to OS
6/10 - Diagnosed Maltracking & patella alta
9/10 - TTT with LR
10/10 - VMO atrophy & muscle imbalance
11/10 - Diagnosed with Femoral Nerve Inflammation

Offline red1702

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Hey :)
Thanks again for all of your encouragement, it's great to hear there's a fellow Brit amongst us, too!
I saw my physio on Tuesday and she's generally happy with my progress although she's concerned that I have developed a pretty strange walk. I guess this is usual though, and I'm sure I'll stop walking like an old drunk in no time.
On the downside, I'm starting to lose extension; this is another thing I have to work on now. I forgot to mention though that the OS I saw recommended putting my dose of Citalopram back up again (anti-depressant) and amazingly it seems to have helped with the pain. Now that I'm feeling happier in myself I seem to making rapid progress. The burning sensation is still there, particularly at night, but it's not as intense as it has been previously and I am starting to build more tolerance for touch. Since I started the daily massage, the scary hair doesn't seem to be growing as fast or as thick as it was before, although the nerves in the lower part of my leg are shot to bits. I had my feet on Gary's lap and he was stroking my ankle when all of a sudden my leg shot up in the air (like an automatic reflex when the doctor gets the rubber mallet thingy on your knee) which hurt like crazy and left us both sitting there very confused.
Back to positive stuff, and I'm walking without crutches 99% of the time. Developed a bit of an uncomfortable click in my knee (boo! :( ) but I'll mention it when I go back to the OS on Dec 19th.
The sweating at night seems to have calmed down, too, but that could well be due to the extreme cold snap we're having in England! It was -5 last night where I live. Does make me feel incredibly stiff when I'm out and about, does anyone else find this in cold weather? I've done a lot of my xmas shopping from the comfort and safety of my sofa this year. Thank goodness for Internet Shopping!!
xxxxxxx

Offline duckie857

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Nat, my knee hates me for being on Rochester. We've been having 35*F/1*C weather here for a month or so. It kills my leg and makes it stiff, for sure!
'04 - '10: Years of dislocations & subluxations

01/13/2010 - LR, MR, VMO Advancement
10/06/2010 - Fulkerson Osteotomy (TTT)
09/02/2011 - Scheduled MPFLr

Offline Kat_Walk

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Hi Nat, just read your last post. Glad to hear that you seem to be in a better place, mentally. I do think that this has a great deal to do with recovery, and I also know it is really hard to stay positive when you are not making the progress that everyone expects you to. You probably also feel better knowing what your "complications" are.. as funny as that sounds. I know that when I saw my Neuro and he said I have a sympathetic dystrophy, I felt better knowing someone had recognized the problem and was going to treat it accordingly. It just gives you that confidence in the situation that it will get better.

As for the shooting of the leg in the air, might it be a part of the CRPS? I have heard that movement disorders are common with CRPS. I have a small movement disorder where my toes twitch like mad and my leg jerks around the place, just randomly - like a myoclonic jerk . Mind you, I'm no doctor, its just a thought.

And as for the xmas shopping, the internet is a wonderful thing! I too have made good use of this wonderful tool  :)
12/9 - Substantial Subluxation of L patella due to a fall
12/9 - 2/10 - PT for injury
3/10 - PT rehab (non responsive)
5/10 - Referred to OS
6/10 - Diagnosed Maltracking & patella alta
9/10 - TTT with LR
10/10 - VMO atrophy & muscle imbalance
11/10 - Diagnosed with Femoral Nerve Inflammation

Offline mermaids

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Quote
I do think that this has a great deal to do with recovery, and I also know it is really hard to stay positive when you are not making the progress that everyone expects you to.

Other people's expectations have been such a problem.  I am sick of hearing, "why didn't they just do a replacement?"  or "My father had TKR and was up and around in no time." or "my brother had ACL and it was no big deal."  Sigh. 
12/90 - scope
12/08 - lateral release
6/10 - scope (aborted attempt at TTT)
9/10 - Fulkerson TTT
12/10 - torn cartilage & possibly PCL

*results may not be typical*

Offline Kat_Walk

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Mermaids, its annoying and funny all at once - people's lack of knowledge or ignorance. There are so many different structures in a knee, hence all the different types of procedures to fix the numerous problems that can occur. Heck, even the different approaches to the same surgery, by different surgeons is unreal. None the less, its so hard to listen to people and their "dumb" comments.. People ask about my knee, and I just can't be bothered trying to explain anymore. Maybe its me and my lack of tolerance!!  ::)
12/9 - Substantial Subluxation of L patella due to a fall
12/9 - 2/10 - PT for injury
3/10 - PT rehab (non responsive)
5/10 - Referred to OS
6/10 - Diagnosed Maltracking & patella alta
9/10 - TTT with LR
10/10 - VMO atrophy & muscle imbalance
11/10 - Diagnosed with Femoral Nerve Inflammation

Offline duckie857

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Kat,  you're not alone. People keep asking me what I had done and why I'm still recovering 8 weeks post-op (haha, I missed my 8 week post...I should go do that!) and I just don't have the energy to explain why this is so different from an ACLr or knee replacement. I had a 82 year old women in the hospital bed next to mine while I was recovering and she was walking around, going the bathroom, and taking tylonol for her pain. She has a TKR the day before my surgery. She went "oh my, love, what did they do to you!?"

Pfft. No one really knows what it's like unless you've been there, done that.
'04 - '10: Years of dislocations & subluxations

01/13/2010 - LR, MR, VMO Advancement
10/06/2010 - Fulkerson Osteotomy (TTT)
09/02/2011 - Scheduled MPFLr

Offline Kat_Walk

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Duckie, I read on someone's KG Post that their OS said, (dont ask me where, I can hardly remember where I left my..umm.. anything)  anyway I heard that a knee replacement is actually an easier recovery than a TTT. It sounded weird to me, as I thought they saw of the tops of the tibia and femur for a replacement, that doesn't sound easy at all, much more invasive than moving a tubercle. Does anyone know anything on that subject?? (hey Duckie, looks like I have now invaded Red's diary and my usual hi-jacking is in full swing  :))
 
12/9 - Substantial Subluxation of L patella due to a fall
12/9 - 2/10 - PT for injury
3/10 - PT rehab (non responsive)
5/10 - Referred to OS
6/10 - Diagnosed Maltracking & patella alta
9/10 - TTT with LR
10/10 - VMO atrophy & muscle imbalance
11/10 - Diagnosed with Femoral Nerve Inflammation

Offline mermaids

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I've also heard that TKR is easier than TTT
12/90 - scope
12/08 - lateral release
6/10 - scope (aborted attempt at TTT)
9/10 - Fulkerson TTT
12/10 - torn cartilage & possibly PCL

*results may not be typical*

Offline KW

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  • My new PFJR...Love It!!!!
I've also heard that TKR is easier than TTT

Personally,  No my PKR was NOT easier then any of my TTT's.
Right Knee
2000 - 2002 - Scope,LR,TTT,Unscrewed
01-10-12 - PFJR

Left Knee
04/07 TTT/LR
08/07 Bone Grth Stim
10/07 Loose/Bent Screw
1/08 Unscrewed/MRI~NON-UNION
02/19/08 Lt  TTT Revision W/Graft
12/09/08 Scope
05/15/09 Scope
09/04/09 PFJR/Unscrewed

Offline red1702

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Hi everyone,
Seems as though it's been forever since I wrote anything but there really hasn't been very much to report on.
Biggest achievement is that I've walked about half a mile without crutches or anything a couple of times now, although I have been tightly gripping the hand of my friend each time. I seem to be doing ok, except it feels a bit stiff and the clicking is annoying, as well as my knee occassionally giving way, but that aside my life is starting to return to normal.
I have even ventured into the town centre a few times to do some christmas shopping!
I really do feel as though I'm over the hurdle and well on my way to a better life with out the dreaded knee pain. I've even made the decision to have my other knee done, although I'm going to book myself on a cruise for a good deal of the recovery time. I'll let someone else wait on me! And, I think I'd be more relaxed and in a better atmosphere, so maybe I'd heal quicker? Who knows.
How is everyone doing? Busy preparing for the Season to be Jolly, I assume!
xxx
P.S My PT is putting me in the gym next week, I'm way excited.

Offline Kat_Walk

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Hi Natalie, it sounds like the knee is coming along well, thats great to hear. How are "you" doing, I mean, are you feeling like you are in a better place mentally? I remember you mentioned you were having a hard time of it over the early weeks. I hope you are feeling better all round. I felt like everyone was so busy looking after my knee, that they forgot about me!

Anyhow, its sounds like things are returning to normal, you must be feeling alot better to book yourself in for round two (the other knee)
Wishing you the best of luck! And Merry Christmas and a Happy New Year!!!
Kat
xx
12/9 - Substantial Subluxation of L patella due to a fall
12/9 - 2/10 - PT for injury
3/10 - PT rehab (non responsive)
5/10 - Referred to OS
6/10 - Diagnosed Maltracking & patella alta
9/10 - TTT with LR
10/10 - VMO atrophy & muscle imbalance
11/10 - Diagnosed with Femoral Nerve Inflammation















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