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Offline lbest

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Totally devastated
« on: March 25, 2013, 09:04:56 PM »
Hi everyone, wondering if anyone can offer any help.

15 years ago I had issues with recurrent patella dislocations. Over a 4 to 5 year period I had lateral releases, hausers procedure and a hauser correction. All went well after that and I had no further dislocations. That lasted for 9 years and I had full functionality back and could even enjoy sports again.

Last February I had an accident in work which amongst other injuries I had a dislocation. No one could have foreseen the damage that this would do to my knee. I had an athroscopy last April to do a debridement and check if there was anything that could be done through athroscopy to stabilise the knee cap as again I was having very frequent dislocations. The surgeon that I had admitted I would need to see another surgeon as due to the haulers procedure he didn't have the confidence or knowledge to fix my unstable knee. I had a new procedure in June 2012 that resulted in an internal knee brace been put inside my knee with a band holding my knee in place. I had some other work done but the major part of the surgery was the knee brace which acted like a seat belt. Unfortunately that didn't work either and I was still having very frequent dislocations. In October 2012 I had another operation to amongst other things release the band in my knee as it wasn't working but also causing a great deal of pain in the inside of my knee. All this time I've been on crutches, have a brace which limits my bending to 40 degrees and wear a splint at bed time.

I have also at some point along the way have managed to get Rsd which is complicated matters even further. The position I am in at the moment is that my patella is very worn away and the v shape bone which holds my knee in place so at the moment my knee is balancing on a bit of bone and this is why my knee is very frequently dislocating. I was told by my knee specialist that my knee is in such bad condition that I would need surgery to stabalise my knee once and for all and this would be the last operation that I would need. He seemed very confident that he could fix the problem this was 6 weeks ago. Today I went back for my appointment to which thought I would be given a date for surgery to be told that infect there was nothing more he could do and I would just need to try and live with this and then said I might grown it of it or it could possibly get better within 3 months by doing nothing at all differently I'm doing now. I was quite shocked by this as a) he already told me that the bone from my patella and leg wouldn't grow back and b) he told me that surgery was my only option. I am 28 years old so the chances of my bones growing as far as I am aware would not be very likely and especially to the extent I would need to hold my knee in place. When I challenged him on this as I have been like this for 14 months now with no signs of improvement, in actual fact things are a lot worse, he then said that there was nothing he could do as it wasn't going to get better. I asked that I could return if things hasnt improved in 3 months and he just reinstated that again there was nothing more he could do. I have paid for private treatment so that I could see this specialist as he is supposed to be the best there is in my near and surrounding area.

I called my physic and he's not happy at all about this. He says that as far as my therapy is concerned then there's nothing more he can do. He's very limited as my knee dislocates as soon as go past 40 degrees and the grinding and pain underneath my knee is excruciating. He has asked the hospital to send my notes to him so he can try and look another options for me.

I am only 28 years old and the thought of existing not 'living' like this for the rest of my life is leaving me completely devastated. I have an 8 year old daughter and both she as well as my husband has had to be my caters as it's so bad I can't do very much at all for myself like cook or even go in a bath or shower. I don't go out at all unless to appointments as I get embarrassed when I dislocate outside but also the excruciating pain makes it impossible. I can't even walk about 20 metres or so without having to stop. I am also losing my jobover this as the company have said that I'm now no longer capable to do my job. It is totally ruining my life (if I could even refer to it as that).

Can anyone offer any advice on this? There are no other surgeons apparently any better than my surgeon plus the ones I have been to have said they won't take me on as a patient as my knee is too complicated. I'm totally devastated.

I feel very lost and drowning in a sea of worry.

Thanks everyone.

Offline Mistyd

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Re: Totally devastated
« Reply #1 on: March 26, 2013, 02:49:36 PM »
First off, let me express my sadness for your plight.  How hard this must be for you!  You sure have been through the ringer  :(   While life might seem to be over (I do understand pain and not being able to walk well and feeling like life is passing by ) you do still have options such as a knee replacement.  I know that may not be the choice you would make, especially at your young age, however, you can continue to suffer until you are old enough for a knee replacement, or just get one and be on the happy living trail from that point on :)

Knee replacements are definitely much much better now than even a few years back.  Yes, they could still have problems or ultimately need replacing, however, if you are not extremely athletic your knee could last 20+ years before any further surgeries.  That is an eternity when suffering  ;).  I would say go for it!

As to your job.... I am sorry that they want to terminate your employment, however, if it was a job related injury then they can't.  You should be getting works compensation and your job is protected (or they pay a very nice settlement).

I do hope and pray (literally) that things turn around for you, quickly and permanently.  You deserve the chance to live!

God Bless,

Misty
Living for the Audience of ONE: Jesus Christ

'95 -knee injury
5-'04 -knee scope cleaned up grade III tears
12-'12-knee scope cleaned up tears
2-'13-harvested cartilage for upcoming ACI
...awaiting ACI

Offline allyd

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Re: Totally devastated
« Reply #2 on: March 26, 2013, 04:22:28 PM »
Iím a little curious as to what exactly they did to stabilize your knee internally with a ďbraceĒ or band. I havenít heard of this before. It sounds similar to an MPFL reconstruction, but not.

I think you should possibly look into a second opinion at this point. While you state your current OS is the best; sometimes a fresh set of eyes is helpful when even the best OSís run out of ideas. Make sure that any doctor you see has a special interest in patella femoral issues and get a full exam/assessment for your instability. There is a lot that can be done, that even the best doctors arenít aware of, simply because they havenít taken an interest in patella instability.

A good question to ask Ė do you know what specifically is causing the dislocations? (Alignment, rotational issues, patella alta, trochlear dysplasia, etc) The answer to this would determine what type of procedure(s) would correctly stabilize your knee.

Overall keep fighting. Your knee may never be perfect due to the cartilage loss (and there are options there as well to ask about Ė microfracture, OATS, ACI and things of that sort) and RSD, but you can improve it.
04/09 RK - Dislocated Patella & Grade III MCL Tear
06/10 RK - Re-Dislocation Patella
09/11 RK - MPFLr + Lateral Lengthening

Offline Lottiefox

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Re: Totally devastated
« Reply #3 on: March 26, 2013, 07:13:51 PM »
I totally agree with ally - keep fighting and try and gather as much information about WHY the knee is dislocating so frequently. Where in the world are you located? I am also curious about your RSD - has it been properly confirmed and diagnosed? What symptoms does that give you and what pain management has been recommended. RSD does complicate matters a lot and certainly is a big concern for future surgery but with proper management it might also help with your overall knee "happiness". I know the instability isn't anything to do with it but the RSD does also need to be managed properly so you have the best all round shot at good function.

You've had a terrible time and you're being brave and hanging in there. If you let us know where you're based people might have a suggestion for who to go and see if you can. I certainly think a fresh set of eyes is needed to help you move forwards.

Good luck and take care xx
Bilateral patella OA since 2009, no surgeries.
Euflexxa working well x3 to current
Right forefoot CRPS post fusion surgery 2011
Refusing to let the ailing parts stop me....

Offline Vickster

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Re: Totally devastated
« Reply #4 on: March 26, 2013, 07:43:52 PM »
I think the OP is in Scotland (West?)

Hang in there, hope you get some help  :)
Came off bike onto concrete 9/9/09
LK arthroscopy 8/2/10
2nd scope on 16/12/10
RK arthroscopy on 5/2/15
Lateral meniscus trim, excision of hoffa's fat pad, chondral stabilisation
LK scope 10.1.19 medial menisectomy, trochlea microfracture, general tidy up

Offline SkyWalker

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Re: Totally devastated
« Reply #5 on: March 26, 2013, 10:37:33 PM »
Hi Ibest,

I recently had a surgery on my right leg to correct my alignment issue. However, my surgeon overlooked my condition, and the surgery didn't correct my alignment issue. Now my kneecap shifted more inward and looks obviously something wrong with it. I've started developing a severe pain(as if glass piece inside my kneecap) on my kneecap and dull pain on my fibula head . I am experiencing the pain 24/7, especially when I stay still(sitting or laying down)...and the pain seems to be getting worse everyday. I do PT work out, I eat healthy, and I take care my legs. But nothing helps...I tried to talk to my surgeon about my pain and the condition(with a good manner and calmly), however, he always tell me I am anxious and everything is fine and I should wait for 6 more months(he originally said my pain would reduced if my ROM back - at the time I had only 65. I now have 180 ROM and pain is getting worse. Then he said I should wait for 2 more months, now he says 6 months...)...he also said even if I am not happy with the surgery, he can't do anything about it, because the surgery have already done to my leg...I am not a patient who complains all the time with small things. I am a positive person in general. I have a high tolerance of pain. I follow PT instruction and I do my best. But I felt like my doctor is not listing to my concern at all...

So I decided to get a second opinion and visited a doctor last week. He is a top orthopedic surgeon in my city and he has a lot of experiences and saving people's lives(even the patients who was told by many doctors to live with the issue and won't be able to walk again etc). He is a master of Limb Lengthening (external/internal fixator - natural way of correcting bones). He confirmed me that my knee alignment is complex(compare to simple alignment issue like knock knock knee or bowed) and I need to have lower/upper leg surgery on both legs(basically my right leg needs to be re-operated again...in order to fix the pain issue). I really think he can save my legs, but he doesn't take my insurance. So the cost would be more than $80,000...now I am trying to find a surgeon who specialized Limb Lengthening method who takes my insurance in my country. Because I don't want to cut chunks of my bone any more, or insert screws any more and make them worse for my legs...I want to fix my legs more natural method...

At this point, I am scared and frustrated...I'd never experienced a pain like this before my surgery. My legs were strong before...but now I'll have to do surgery to correct my both legs all over again with one damaged leg...

But I am doing my best to walk(I still walk funny and the pain is bad every time I walk...), work out my legs, stay positive, and keep researching to find a good doctor for me. I don't want to give up...I want to walk normal again...!!!

I really suggest you to go to doctor who uses the Limb Lengthening method. They might be able to help you. If you are in U.S, I can send you some resources I found on Limb Lengthening doctors.

Good luck. Don't give up and don't lose hope! If you don't give up, then a lot of bright future ahead of you!
« Last Edit: March 26, 2013, 11:00:33 PM by SkyWalker »

Offline lbest

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Re: Totally devastated
« Reply #6 on: March 27, 2013, 08:42:31 AM »
Hi everyone thanks for all your comments.

I have asked the 5 consultants that I've seen for a knee replacement however they said that as there is a chance which in their opinion, is highly likely that I will outlive at least 2 replacements then they are not prepared to do it. I would more than happily take a replacement if it ment even getting 25% of my life back.

The internal  knee brace is just a new procedure that was invented by my consultant. I have a newspaper article on it that I could send you if you like. It is very similar to mpfl reconstruction but apparently less traumatic and invasive. Because I've had the band and brace fitted I now cannot have the mpfl reconstruction.

Yes the rsd has been diagnosed and I know see a pain management specialist. The rsd causes me a great deal of pain especially when it's cold, which living in Scotland, uk is all the time. I can't stand for more than 5 minutes or so withouth my knee going black and purple colour. My knee gets very very stiff although I try to move it as much as I possibly can. I have tried lots of different pain meds and I'm now on daily morphine which just makes me feel sedated. I also see a physiotherapist that has special interest in rsd / crps. I use a muscle stimulator too as I have severe muscle atrophy of my quads and now on my calf too.

You are right vickster, I am in the west coast of Scotland.

I have been speaking over things with my physiotherapist as he is not at all happy with what my surgeon has recommended so he has said what you all have that a fresh set of eyes are needed. The problem is all the specialists in my close and surrounding area have either said they can't do anything or have just refused to see me saying that my knee is too complex. I have a meeting with my physio this week to look over everything and see if we can find another surgeon who would be willing to take my leg on. I am also looking at the possibility that I may have to travel to find this. My physio is thinking at the moment that the best option may need to be a replacement however as I said because I've had 8 lots of surgery on my knee, I think it may be hard to find someone who is willing to do this.


I hope your all well! Thanks so much for al the comments. It really means a lot. I just feel at the moment






Offline lbest

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Re: Totally devastated
« Reply #7 on: March 27, 2013, 08:44:53 AM »
Loops sent without meaning to.

.....atvthe moment I am running out of options. I'm normally quite positive but just now finding it really hard. It feels like everyone is just giving up on it.

Thanks again x

Offline Lottiefox

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Re: Totally devastated
« Reply #8 on: March 27, 2013, 11:48:21 AM »
Hi

I think you may well need to travel to find someone who can consider your case. The huge issue here is not only the mechanical problems but the uncontrolled RSD. I have RSD in my forefoot and although I was lucky and its controlled the concept of surgery especially on that foot or leg would bring lots of complications. Have you been trialled on neuropathic meds for the rsd such as pregebelin or gabapentin? It is often hard to find a mix that works - how long ago was the rsd disgnosed? Have they mentioned a nerve block at all? These can have a positive effect but need to be used within the first 3-6 months to have the best chance of success. It is good that you have a physio who appreciates the complexity of your knee combined with the rsd. It must feel very hard to stay positive at the moment - rsd alone is a draining, revolting condition that wears down your resolve let alone combined with an unstable knee. Despite feeling everyone is giving up on it the big plus is that you haven't given up - keep fighting. Get your notes, approach any surgeon within striking distance that might be an option and see if they will consider you. Many surgeons have helpful secretaries if you state your case - especially if you are able to fund an initial consult privately and if they do NHS work they will usually then transfer you an NHS list so long as your GP can make the referral. But don't be afraid to research people yourself - how far realistically do you think you could travel?

Good luck, hang in there

Lottie  :)
Bilateral patella OA since 2009, no surgeries.
Euflexxa working well x3 to current
Right forefoot CRPS post fusion surgery 2011
Refusing to let the ailing parts stop me....

Offline FMRCathelete

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Re: Totally devastated
« Reply #9 on: March 27, 2013, 04:19:46 PM »
I just want to encourage you to keep fighting and searching also.  You have very extenuating circumstances that it would seem if a total knee is the next logical step, then what does age have to do with it?  You are young and need to live now.  Technology is improving all the time and it is totally reasonable to think that if the 1st TKR wears out in 15-20 years, then the next one has a chance to last the rest of your life.  I think the OS's are scared and short-sighted in this regard.  Lottie is great for RSD info, & I'm happy she found your thread.  Thank goodness you have an excellent PT to advocate for you.  Hang in there, and with any luck you'll find an OS that can welcome a complex case & is willing to go all in to help you.  Take care-A
Lat release 5/08
OATS 7/09
PJFR 10/10
Scope, plica removal/synovectomy 1/12
Scope, Medial retinacular release and debridement of excess tissues 2/13
Knee Denervation 3/2014

Offline lbest

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Re: Totally devastated
« Reply #10 on: March 27, 2013, 07:45:21 PM »
Thanks again everyone for your encouraging messages.

I would be willing to travel to travel any where at all in the world to try and get this fixed. Realistically I would prefer to stay in the uk as may find it difficult to get insurance travelling back after surgery, also it would be difficult to get someone to accompany me abroad for a longer period of time if I wasn't allowed to fly back to the uk quite soon after the surgery.

Take care everyone and thanks again x

Offline chappers

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Re: Totally devastated
« Reply #11 on: March 31, 2013, 03:46:00 PM »
If you are willing to travel and pay / insurance then I might suggest you look at the Fortius Clinic in London.
It can be easily found on google if you type in Fortius. They have a range of surgeons who do nothing but lower legs and are all excellence in their field. They even discuss your issues in a consortium amongst themselves if you are a special case, which you seem to be.

It's worth a trip to London with all your notes. They have MRI / X-ray on site. You may even run into professional sports players on your visit.

Good luck and happy Easter

Offline lbest

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Re: Totally devastated
« Reply #12 on: April 04, 2013, 01:46:14 PM »
hi chaggers,

thanks for your advise. ive looked up the clinic and it is exactly what im looking for, im just waiting on my physio getting back to me to see what he thinks.

hope you had a nice easter!
















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