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Author Topic: what options do i have left ? :(  (Read 5752 times)

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Offline welshbabe

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what options do i have left ? :(
« on: December 13, 2009, 08:22:29 PM »
i am in desperate need of some help before i crack up and my head explodes!! ive suffered with patella dislocations of both knees for 4-5 years have been diagnosed with bjhs for the past 2 years. had 3 major surgeries on left leg but i continue 2 have dislocations. ive tried alternative herapies such as constant physio, knee taping, braces (my patellas dislocate in every brace ive tried) ive even been at stanmore hospital for inpatient rehab (due to go again next feb) NOTHING has worked.

when i have dislocations which is approx every 6 weeks or so - the pain is so severe i require an ambulance along with a trip 2 hospital 2 put my knee bk in place & strong painkillers (morphine) & im put in plaster casts for a few days after a dislocation everytime (this is the only thing that relieves my pain after a dislocation) ive tried 2 avoid trips 2 hospital but its impossible as nothing apart from morphine helps! if the dislocations wernt painfull i could live with it BUT it stops me from doing everything i want to do. my life has been on hold for the past 4-5 years .. any suggestions!???? im willing 2 try anything (unless ive already tried it)

i cannot carry on like this - i am a healthy 24 year old female (apart from having dodgy knees) im on the verge of cracking up - help would b much appreciated! if you require more information please ask .. cheers
2004 - athroscopy (3)
2005 - roux goldthwait procedure
2007 - left patella stabilization & advancement
2008 - tubercule osteotomy & advancement
2008 & onward - still have dislocations on both knees

Offline Silkncardcrafts

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Re: what options do i have left ? :(
« Reply #1 on: December 15, 2009, 11:01:18 AM »
Hi there,

Sorry to hear what you are going through.

I am not surprised at all that the rehab hospital didn't work. Now I work as an Allied Health Assistant in a rehab hospital. It is more about a pain management approach often, but don't address the underlying problem.

Did you end up contacting Mr Donnell ? There is meant to be a good OS in Bristol called Dr Eldrige. Would it be worth considering going to see him. He works both publicly and privately I think.

For patients with hypermobility a lot of soft tissue operations don't work. That was certainly the case for me. I had a trochleoplasty last year on my left knee where they deepen the groove and worked wonders. It is a bony operation and seems to have worked much better. I am having my right knee done in early February.
11/1996 - RK LR
07/1997 - LK LR
11/1998 - LK MPFL Reco
12/2005 - RK LR Repair
07/2006 - LK MPFL Repair
11/2006 - LK LR Repair
22/05/08 - LK Trochleoplasty
11/02/10 - RK Trochleoplasty
07/03/11 - RK Chrondroplasty

Offline welshbabe

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Re: what options do i have left ? :(
« Reply #2 on: December 15, 2009, 07:21:50 PM »
hello!! i did not get in contact with mr donnell as i was waiting to see what the london professor had 2 say - getting to the point where im giving up because different surgeons r telling me different things .. i mean who am i meant 2 believe!?
in london they have mentioned the groove on my left knee isnt deep enough (but my local hospital scans reveal the groove is okai) who is correct i dont know!!
ive been put off by that surgey because they mentioned theres a posibility it would bring on early athritis because the kneecap will wear much quicker as it sits lower!! bk to stanmore for 2 weeks of rehab in feb - doubt it will work but ill give it a go! ive been told i need 2 build up the muscle in the left thigh before they think about any surgery - but how am i meant 2 do this if i keep having dislocations (i mean ive been trying to build it up for years) !
i wish there was an easy option  :(

good 2 hear one leg has been fixed with urself & hope ur other sugery goes well x
2004 - athroscopy (3)
2005 - roux goldthwait procedure
2007 - left patella stabilization & advancement
2008 - tubercule osteotomy & advancement
2008 & onward - still have dislocations on both knees

Offline Silkncardcrafts

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Re: what options do i have left ? :(
« Reply #3 on: December 15, 2009, 09:30:06 PM »
Hi there,

Please do not give up. I know it is tough, but someone will be out there that can help you.

Mr Donnell is a top PF specialist in the UK and really knows his stuff. I would really urge you to see if you can get in to see him. Mr Eldrige in Bristol is also meant to be good.

The information you have been given about trochleoplasties is both wrong and misleading. I asked my OS about the prospect of getting early arthritis and there is no evidence to suggest that. That is why I think you need to go and see a real PF specialist such as Mr Donnell to be given the right information.

Have you had any CT scans done ? These will tell the true story.

If you haven't already I would consider doing clinical pilates. I found it a great way to build up my muscles around my knees.
11/1996 - RK LR
07/1997 - LK LR
11/1998 - LK MPFL Reco
12/2005 - RK LR Repair
07/2006 - LK MPFL Repair
11/2006 - LK LR Repair
22/05/08 - LK Trochleoplasty
11/02/10 - RK Trochleoplasty
07/03/11 - RK Chrondroplasty

Offline welshbabe

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Re: what options do i have left ? :(
« Reply #4 on: December 15, 2009, 09:39:45 PM »
thankyou for ur reply .. i will defo consider going 2 see 1 of them!! i have had ct scans done in my local hospital & london .. this is where i had different information from - cardiff hospital said the groove was ok but london hospital said it is not deep enough! im going bk 2 cardiff hospital in janurary now so will see wot he says (cardiff also mentioned my bones r twisting slightly but there is no mention of this up in london) it would be nice to have 2 surgeons tell me the same thing!!!!
2004 - athroscopy (3)
2005 - roux goldthwait procedure
2007 - left patella stabilization & advancement
2008 - tubercule osteotomy & advancement
2008 & onward - still have dislocations on both knees

Offline Silkncardcrafts

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Re: what options do i have left ? :(
« Reply #5 on: December 16, 2009, 01:19:49 AM »
Hi there,

I felt that the surgeon you went to see in London wasn't really a PF specialist. However, Mr Donnell is renowned world wide and has written some very good articles.

From what I understand it is really important that CT scans are done a certain way. I know that my knee surgeon only likes getting the CT scans done at certain places. If they are done incorrectly they can be a waste of time.

This is definitely something you need to sort out. I am just so glad I have a good knee surgeon and sports physician that understand my problem well.

I am also under a psychologist that specialises in hypermobility. It has made a big difference. Have you thought about seeing a psychologist to help with your pain management ? It is really important to learn about energy conservation and not pushing yourself too much. There is also an organisation in the UK called the Hypermobility Syndrome Association. Their website is www.hypermobility.org

Occupational Therapy may also be something else that may help you. It will teach you about energy conservation and dealing with your pain better. I work in Occupational Therapy and have learnt a lot from it.
11/1996 - RK LR
07/1997 - LK LR
11/1998 - LK MPFL Reco
12/2005 - RK LR Repair
07/2006 - LK MPFL Repair
11/2006 - LK LR Repair
22/05/08 - LK Trochleoplasty
11/02/10 - RK Trochleoplasty
07/03/11 - RK Chrondroplasty

Offline welshbabe

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Re: what options do i have left ? :(
« Reply #6 on: December 16, 2009, 06:10:42 PM »
really appreciat your reply once again thanxs! i will be going 2 see my doctor next week about mr donnell .. i was due to have pain management up in stanmore but that didnt work out because they messed things up - i should recieve it in february tho but i will mention it to my doctor to see what the waiting times r if he was to refer me x
2004 - athroscopy (3)
2005 - roux goldthwait procedure
2007 - left patella stabilization & advancement
2008 - tubercule osteotomy & advancement
2008 & onward - still have dislocations on both knees

Offline Silkncardcrafts

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Re: what options do i have left ? :(
« Reply #7 on: December 17, 2009, 11:29:54 AM »
Hi there,

No worries, know how frustrating hypermobility is and managing the pain.

I know that Mr Donnell works in the NHS and also privately. It would be worth seeing him privately I think. Hopefully should give you more time.

As for a pain management program there should be one at your local hospital. I am surprised your physio and other doctors have not given you ideas on pain management. If you want I could email you some stuff I found helpful.

I am under a physiotherapist, psychologist and doctor to help give me strategies to manage my pain better. Am also recovering from a car accident I had last yea where I injured my back, neck and shoulder. So, is important I have the pain under control. If I don't to rips me apart.

Hope you are not in too much pain.
11/1996 - RK LR
07/1997 - LK LR
11/1998 - LK MPFL Reco
12/2005 - RK LR Repair
07/2006 - LK MPFL Repair
11/2006 - LK LR Repair
22/05/08 - LK Trochleoplasty
11/02/10 - RK Trochleoplasty
07/03/11 - RK Chrondroplasty

Offline welshbabe

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Re: what options do i have left ? :(
« Reply #8 on: December 17, 2009, 10:12:50 PM »
i think i need 2 make a trip down to my doctor to sort out pain management (i went a few weeks ago asking about this but he decided changing my painkillers would be best option) but now i will go back saying i need to see someone so i can have some help .. emailing me some info would be a great help thankyou very much - email is [email protected]

2004 - athroscopy (3)
2005 - roux goldthwait procedure
2007 - left patella stabilization & advancement
2008 - tubercule osteotomy & advancement
2008 & onward - still have dislocations on both knees

Offline Silkncardcrafts

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Re: what options do i have left ? :(
« Reply #9 on: December 19, 2009, 07:22:55 AM »
Hi Michelle,

I think I would be finding a rehab doctor or sports physician to better manage your pain. GPs just don't have a bloody clue !

Never see a GP now. Just see a sports physician for all my medical needs. As my pain is a major issue for me my doctor helps manage it.

Will email you some info in the next few days.
11/1996 - RK LR
07/1997 - LK LR
11/1998 - LK MPFL Reco
12/2005 - RK LR Repair
07/2006 - LK MPFL Repair
11/2006 - LK LR Repair
22/05/08 - LK Trochleoplasty
11/02/10 - RK Trochleoplasty
07/03/11 - RK Chrondroplasty

Offline Silkncardcrafts

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  • Posts: 3916
  • Liked: 6
Re: what options do i have left ? :(
« Reply #10 on: December 20, 2009, 07:52:25 AM »
Hi Michelle,

I have just sent you an email with some ideas. Hope they help. Let me know your thoughts.

Make sure you ask about getting some CT scans done too.
11/1996 - RK LR
07/1997 - LK LR
11/1998 - LK MPFL Reco
12/2005 - RK LR Repair
07/2006 - LK MPFL Repair
11/2006 - LK LR Repair
22/05/08 - LK Trochleoplasty
11/02/10 - RK Trochleoplasty
07/03/11 - RK Chrondroplasty















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