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Author Topic: Do I have any options? (sorry this is long)  (Read 2041 times)

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SL99

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Do I have any options? (sorry this is long)
« on: July 24, 2003, 02:20:09 AM »
Hi all,

As most of you know I am kind of at my last chance saloon right now with my legs, facing an appointment with my original OS soon to see what if any options I have for my rapidly deteriorating left leg. I'm starting to get a little nervy about the whole thing already as I'm feeling very hopeless and lost at the moment regarding any chance of regaining function or pain free mobility in my limb. I'm just at a loss as to know what could be done, and I'm started to worry about the really scary options that are in my head.  :-/

So I thought I would see if any one maybe even KNEEguru had any suggestions for something anything that may help my situation. I guess I should give a little background to give you an idea of my problem and  the underlying complications that make fixing it even more difficult.

I am "blessed" with the rare combination of an unusual connective tissue disorder and a rare leg deformity. As a result of my condition I have muscle and ligament weakness meaning I dislocate very easily and have severe joint pain and mobility problems. This is made worse in my leg by the deformities I ahve had since birth but weren't identified. I have misalignment with my spine and hips, pus some hip dyplasia from my EDS but the main misalignments are with my legs themselves, particularly on in the left. I have an inwardly rotated femur, malformed knee joint with missing medial condyle, causing my patella to sit medially subluxed and compensatory three point varus deformity of my tibia too. Basically meaning that if my foot is flat on the floor my knee is pointing completely inwards, ad if my knee is facing forwards my foot is pointing outwards at over 45 degrees.

My knee cap constantly dislocates medially, confusing the doctors somewhat and prompting some to even call me a liar. It will dislocate in all other  directions too, but largely medially. My knee joint itself is very unstable to and is capable of subluxing out of joint. I have constant pain and instability and find walking any distance very painful and difficult. Physiotherapy fails to work because it is impossible to work the required areas of my leg without dislocating my knee or ankle due to the rotation in my leg and bracing has proved unsuccessful and damaging. The twisting is progressing and I am now reaching the stage where I can't rely enough on my right leg to walk even with crutches.  Basically I am rapidly heading for a wheelchair and know that if nothing is done for me I will spend the rest of life there.  :'(

I have been told that any corrective surgery would ahve to me skeletal due to my connective tissue problems and the inability of the soft tissues to heal, so ligament work is out - I have already had two failed lateral ligament surgeries. I was advised recently that I would need my whole leg reconstructing, involving breaking my femur inserting a metal rod into it to straighten it, performing a hip grapft osteotomy to build a medial condyle and replace the missing parts of my knee, lateral ligament grafts, plus a three point osteotomy of the tibia. I was pretty shocked by the brutality of this but prepared to go through it for the chance of some normality and a few years off crutches. Sadly though the surgery has been deemed far too speculative especially as nobody has expertise in this, so I ahve been told the only option they can give me is a lateral ligament graft which they feel wouldn't be worth while or telling me there's nothing they can do.

Which is where I'm at now. Up the creek, getting worse and rapidly losing my boat let alone the paddle. I don't know what to do next, but I can't accept just living in this much pain and facing a life in a wheelchair without even trying to fix it first. I am so desperate to try and get rid of this constant pain, I am even seriously considering amputation right now if they wont offer me anything else.

I am so sorry that this has turned into a whinge, but I really am at the end of my tether and getting very scared of where things are heading - as the only two option I have right now, living like this or amputation are scaring the heck out of me. So I was just wondering if anybody knew of anything else that might be possible? I know it's a big ask and I'm unlikely to find anything, but I really just needed to try for peace of mind.

Thanks for any advice and for listening to and putting up with a pathetic little whiny person, who should know better!  ::)

Love and hugs.....Jo
xxx
« Last Edit: July 24, 2003, 03:01:12 AM by SL99 »

Offline Lizzie - UK

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Re: Do I have any options? (sorry this is long)
« Reply #1 on: July 24, 2003, 02:35:28 AM »
{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{Jo}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}

Extremely big hugs as you must be going out of your head with worry.  You know me as a true friend and what I am going to say is not intended to hurt you, but, stop worrying, it is only causing you undue stress and this is leading to more pain, as you are probably aware that stress is a major cause of pain and the stress will go to the weakest part of your body, mainly, I guess your knee, or maybe your shoulder.

When I was reading your very well defined message, my thoughts were also to skeletal realignment of your lower leg, ie, osteotomy.

I'm afraid that I cannot help you with any of your questions, by being able to give you an answer.  It is hard not knowing what you can do and having to put your life, as it is your life we are talking about into the hands of an OS.  

There is one thing, that I would like to suggest.  Have you made contact with the Royal National Orthopaedic Hospital in Stanmore, Middlesex.  They do some incredible work and they do have an email that you can send queries to. I am more than sure that they have.  Their web address is http://www.rnoh-stanmore.org.uk/  It is only a suggestion mind you, I don't know if it will work, but if you don't try, you will never know.

I am sending you all my love, hugs, kisses etc etc
Lots of love
Lizzie xxx

PS You know where I am if you need to chat more  :-* :-* :-*
Past History of L&R Knee
Bilateral OA
Medial Meniscal Tears
Lateral Releases & Medial Reefings
Ruptured LCL, MCL & PCL
Adhesions in the interconylar notch of ACL removed
Suprapatella plication
Debridements/Lavages
Deep chondral fissure in crest of patella
Awaiting MRI - LK
TKR - RK

Offline Ross

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Re: Do I have any options? (sorry this is long)
« Reply #2 on: July 24, 2003, 02:54:14 AM »
Jo, what you're blessed with is a circle of friends who are really deeply concerned for your wellbeing.  The way you put it things sure look bleak but I have always believed that the darkest is before the dawn.

There are all manner of new procedures being performed, no two conditions are alike so no two solutions will be either.  If not now and immediately, a solution will eventually be found.  Whatever course of action you take I would suggest that the most conservative is the one that leaves you the maximum chance of a fall back in the event the outcome is not all it could be.  Radical amputation seems just a tad extreme, that way leads to all sorts of other issues and probably a wheelchair anyway.

I know that this hasn't contributed much to your decision making process but know that we are all with you and that we are hoping and praying for you.  It's not hopeless 'til YOU give up hope!  Keep believing in yourself and them that support you, maintain your faith.


((((((((((((((((((((((((JO)))))))))))))))))))))))))))))!!!!!!!!!!!
I'm a grumpy old bear with a busted knee.  The growling you hear is my tummy rumbling!

ARC

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Re: Do I have any options? (sorry this is long)
« Reply #3 on: July 24, 2003, 03:05:17 AM »
(((((((((((((((Jo)))))))))))))))
I really do wish I could help you make the decision and speed up time so your appointment comes up very quickly.  I just wanted to let you know that I am here for you any time you need to chat.  Everytime I read any of your posts I am amazed at what a strong person you appear to be, the fact that you are here as often as your are giving advice and support is amazing to me.  Please take care of yourself, and keep me posted.
Sending alot of gentle hugs to you.
-Kolleen

Helen_uk

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Re: Do I have any options? (sorry this is long)
« Reply #4 on: July 24, 2003, 01:13:38 PM »
Hi there sausage you are feeling rubbish please e mail if you can matey I am always here.

I wonder if the risks are so high... would it be worth furthering the surgery aspect at this point. Tat dosent mean there wont be answers in the future as you know I was once told this and have made a life for myself on crutches and in a wheelcahir I am sat in one of mine now typing this and it isnt the end of he road it was the beginning of a very exciting journey once I began to enjoy the benefits of being able to get about.

I can paly with the kids race around after them etc.
Another point I want to make and I dont want to sound like I am lecturing you that is the last thing I want to do because I know just how you feel..... but in terms of pain when you have such disability surgery can make the pain worse.
I accept that my next operation wont do alot for my pain and will only help in stabilising one joint whilst the others will continue to pop out.
Please ring or email so we can have a real chat about this...... however I do agree that you must seek further opinions on this because you need to find someone who undertsands and can help manage you as a whole instead of bits and pieces of you.

I really do understand how frustrating and unhappy you are feeling but surgery realy could make you much worse...... If maybe they can stabilise the joints athat are limiting you the most maybe that will help in the long term  I wish I could win the lottery and help you out with private and imediate consultations,
Take car little on
Much love
Helen xxx ;)

SL99

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Re: Do I have any options? (sorry this is long)
« Reply #5 on: July 26, 2003, 02:14:39 AM »
Thank you all for your support and advice guys, it really does mean the world to me.

I have to confess that I wrote this thread at the height of a pain and fear induced panic about where I could possibly go next with my legs, I'm just getting so scared that I'm about to hit a brick wall. I know that if I have to I will cope with living like this, with the wheelchair and even with the pain eventually and as I have said in my All I Still Have post I would make the most of the situation...but whether it's right or wrong, I just can't accept giving up yet though. The hardest part for me isn;t going to be coping with whatever I have to, it's the fact that nobody will even try to help me delay my inevitable fate. You see, I'd just rather end up in a wheelchair having tried to fix my leg as just roll over and accept it without having a go to get maybe even a year or so of mobility and freedom. I think what I'm trying to say is that I'd prefer to go down fighting than waving a white flag if you know what I mean?  

I know I'm never going to get better and I know that there's no miracle surgery to stop the pain and give me a normal life or leg again. But my stubborn streak needs to know that I at least tried everything I could to get a workable leg for even a short period of time. I know I can cope with whatever comes my way, but I'm really desperate to give getting my leg more manageable with my other pain a decent shot. I just need someone to have the courage to go with me on this and try... regardless of the consequences because I genuinely feel that right now I could cope with learning to walk with a prosthetic better than I can my useless leg. Does that make any sense?  :-/

I'm not going to rush into any big decision and will think through my possibilities very, very carefully. Even if that means chasing yet more opinions and trying yet more surgeons. Thanks Lizzie for your support and your suggestion/link I will certainly look into that. Ross thank you for being my little piece of sanity and reminding me to keep my faith and hope - that's one thing I shall never run short of mate, especially with the wonderful love and support I get here. Kolleen, thank you so much for caring Sweetie, I cant tell you how much that helps.

Helen Darl, thank for your invaluable advice and for understanding so well, and for making me see that the surgery isn't always the right way to go. And indeed for reminding that making a big decision now might harm my opportunities in the future. I promise that I wont rush into anything and I know that your courage and ability to cope with your disability will help me in making my decisions over my future too. Thank you for being there and know that you a re a very special friend to me.

I got conformation that I have an extra long appointment with my OS on August 6th... so here's hoping that I finally get some answers and something better than my nightmares to think about. But anyway, I've decided that worrying about what might happen isn't going to change anything and is probably only making me feel worse, so here I am trying to pretend that I'm calm! I'm determined to try to get some answers though and one thing is for certain through all of this - I'm not going to give up. I can me quite bloody minded when I need be!

Thank you again for your support and listening to what by now must be very insane ramblings! Much love and healing thought to you all.

Love and hugs...Jo
xxx

Offline The KNEEguru

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Re: Do I have any options? (sorry this is long)
« Reply #6 on: August 03, 2003, 11:27:53 PM »
--
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Helen_uk

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Re: Do I have any options? (sorry this is long)
« Reply #7 on: August 04, 2003, 12:50:22 AM »
Hey Jo this looks like your knees on your pics sounds interesting though.
Hope you are ok and that your family are getting better give them my love and I will email soon To be honest i am inagaony at the moment and its really getting me down.
Ta for the e card but the page wouldnt come up I treid sveral times but no luck but thanks for your thought full ness.
Love hxxx
Ps if my lottery card comes up this week or I come into any money I will pay for you to see this guy.... if only hey.
XXXXXXXXXXXXXXXX ;) :D ;D

SL99

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Re: Do I have any options? (sorry this is long)
« Reply #8 on: August 05, 2003, 03:48:20 AM »
Thank you KNEEguru, that's certainly an interesting idea and one I will look into fully. Like Helen says the pics are similar to my twisted little legs! I have my appointment with the OS on Wednesday, so may mention it to her during that too when we're talking options as it might be something she could consider...

I'm feeling pretty nervous about the appointment now to be honest as like I say it's make or break time, especially as my condition is progressing at frightening speed, with my shoulder deteriorating rapidly and more and more joints becoming problematic every week. Oh well, fingers crossed and praying for some positive answers...  :-/

Helen - I hope that by the time you read this you are in less pain Darl, please know that I'm thinking of you and always here for you. Feel free to call or email me when ever you need me Sweetie as I'm always here. I'm sorry the card didn't work - I'll try resending it to you though. Take care my friend and thank you for the lottery offer - the same applies back too Darl!  ;D

Love, hugs and many thanks to everyone for their support and suggestions, I really would be lost without you all.

Jo
xx
« Last Edit: August 05, 2003, 03:49:10 AM by SL99 »