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Author Topic: 10 months on crutches - Please help me!  (Read 3774 times)

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Offline allie

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10 months on crutches - Please help me!
« on: September 11, 2008, 01:13:17 PM »
Hi have posted before have been in and out of hospital so have lost track of my posts.  I would just like to hear any other suggestions anyone has for my case.  I dislocated my right knee (patella) on 12th December 2007 and since then have had many tests & treatments including MRI, thermoimaging, x rays and scans also steroids, lumbar sympathetic block, ketamine therapy, in patient intensive physio and 2 surgeries which were arthroscopy and mua  (debridement) and an achilles tendon lengthening op which was in June.  Until 3 weeks ago I was using an ankle brace but have been told to remove that now which I was very happy about.   I was diagnosed with RSD, osteoarthritis and have problems with odema- my ankle has been swollen now for about 8 months and range of motion, bending is ok and has significantly improved but I am unable to fully straighten my leg (the only time I could straighten it was under anesthesia and following ankle surgery when I was in a full leg cast for 3 days) I also have muscle wastage throughout right leg.

Currently I am just wearing a small knee brace- I don't know what it is called but it has a hole in the centre.  I have stopped taking any pain meds  as I was on such a huge amount of meds I wanted to try without if possible.  I attend physio twice weekly for passive movements, gait training and electrical & heat therapy.  In between these sessions I do ankle flexion and extension movements throughout the day, use a heat pack once a day and practice knee flexion and extension frequently daily, I have also just started to use an exercise bike daily and managed 30 mins of this last night ( am building up every day)
I am concerned about lack of full extension after so long and the back of my heel where they operated on my achillies tendon feeling very lumpy, my foot and ankle are always swollen and at the moment I have continuous pain in my heel and ankle burning pain like RSD which began in my knee (Is it possible for RSD to move around??) , I have sensory difficulties in my foot to the extent that I am unable to feel the electrical therapy even on the very highest setting.  My knee doesnt give much pain generally but hurts during exercise and physio.  I also have the occasional very severe pain on weightbearing which stops me in my tracks.  In physio I have just begun to try to walk with a  single cane, with a gait belt and a physio to hold me up but because I am so unstable and having these episodes of severe, sharp pain-the physio has told me not to even reduce to one crutch at home myself, only under his supervision.  He ( the physio) is concerned about my lack of progress and is referring me back to my specialist to review both my knee and ankle.

I would just like any suggestions as to anything else I could try- I just want to walk (Im not expecting to run or play sport!!!) so that I can get my life back...I am finding it difficult not to lose hope  of walking again.  Oh by the way I am 34 years old, female and a teacher- I have continued to work when  have not been in hospital and am even wondering if my job is too much and I should give that up too.  Hope you don't mind all this waffling....Hope one of you lovely knee geeks may be able to help me , please
Pre 1992 Repeated dislocations both knees
1992  bi Lateral Release
2007 dislocation left knee
Dec 07 dislocation right knee
May 08 arthroscopy and MUA
Jun 08  achillies tendon surgery
Jun 09 arthroscopy and MUA
Jul 09 discharged from physio- not working
Jul 09 still on crutches (18/19 months)

Offline Tabitha

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Re: 10 months on crutches - Please help me!
« Reply #1 on: September 12, 2008, 04:13:21 AM »
I'm sorry that you are going through such a tough time. I am not a knee geek, and I don't  know what to say. I hope that you find some answers soon.
ACL injured 2006- Snowboarding
Reinjured ACL + miniscus 8/18/08- Playing frisbeee
ACL Autograft/ Lateral Miniscal repair  9/12/08
Started PT 9/29/08
80 degree ROM

Offline step

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Re: 10 months on crutches - Please help me!
« Reply #2 on: September 12, 2008, 09:02:16 PM »
Dear Allie,

Sorry to read about your pain, and that you still cannot walk so long after surgery.

I think the PT is right, a second medical opinion would help. Please check on this website posts about RSD - there are kneegeeks with this condition - maybe if you re-post your question on this thread: http://www.kneeguru.co.uk/KNEEtalk/index.php?board=44.0  (soft tissue problems) it could help you reach more of those who understand the condition.

I read that RSD can 'move around' in rare cases - it's called "migratory RSD"

I wish you good recovery,
Lennie

Offline allie

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Re: 10 months on crutches - Please help me!
« Reply #3 on: September 13, 2008, 11:58:29 AM »
Thanks Lennie,
 I will try re-posting in the RSD section as well.  I have just been given a OS appointment for the 29th September.  I am hoping to stay positive and keep going until then. I will also try finding out about migratory RSD- there are times when my feet are totally different colours which is the same thing that happened when my knee was diagnosed, as well as the pain being the same so I am pretty sure that is what is going on.
Pre 1992 Repeated dislocations both knees
1992  bi Lateral Release
2007 dislocation left knee
Dec 07 dislocation right knee
May 08 arthroscopy and MUA
Jun 08  achillies tendon surgery
Jun 09 arthroscopy and MUA
Jul 09 discharged from physio- not working
Jul 09 still on crutches (18/19 months)

Offline Silkncardcrafts

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Re: 10 months on crutches - Please help me!
« Reply #4 on: September 13, 2008, 01:51:43 PM »
Hi Allie,

Sorry to hear you are going through a difficult time. Whereabouts do you live ? If you're in the UK I know of a good sports medicine clinic in London that would probably be able to help.

My suggestion would be too see a good sports physician/doctor who can review both your knee and ankle and where your rehab is at the moment. It sounds like you haven't had sufficient rehab. I would ask them to refer you to 2 different surgeons. One for your ankle and the other for your knee. It is very specialised these days and need to see people specialised in their fields.

I would also encourage you to start taking your painkillers. Taking no pain medication when you are in so much pain is not the answer.

Like you, I have had problems with my knees and ankle for quite some time. I've surgery on both knees and my left ankle which are much better now.
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 allie

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Re: 10 months on crutches - Please help me!
« Reply #5 on: September 14, 2008, 01:34:40 AM »
Hi KJ

Thanks for your reply, Unfortunately, though I am from the Uk I am living in working in Seoul,  South Korea.  The medical treatment I have received here has been good I think (although the treatment I had initially from Dec- Mar was at best negligent, I then changed hospitals and doctors)  I have been attending physio at least twice a week every week since I was in hopsital in June and excercising myself in between these times.  I can only think there must be something I am not doing or not doing correctly or something that is being missed. 
I will go back to see the rehab specialist I am currently under as a first step, he can then refer me to other docs within the hopsital. 

I think I will have to go back on to pain meds, I was beginning to think about that myself. 
What did you find helped your recovery most of all?  What surgeries did you have?  I am glad to hear that you are much better- What, if any, limitations have you been left with?
Pre 1992 Repeated dislocations both knees
1992  bi Lateral Release
2007 dislocation left knee
Dec 07 dislocation right knee
May 08 arthroscopy and MUA
Jun 08  achillies tendon surgery
Jun 09 arthroscopy and MUA
Jul 09 discharged from physio- not working
Jul 09 still on crutches (18/19 months)

Offline Silkncardcrafts

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Re: 10 months on crutches - Please help me!
« Reply #6 on: September 14, 2008, 11:41:15 AM »
Hi Allie,

I doubt whether you are getting the right treatment in Korea.

To be honest, I would seriously look at coming to Melbourne, Australia to get some good advice. When I lived in the UK my Australian sports physician had a patient that was living in Japan and wasn't getting the right treatment. So, she ended up going to the UK for her treatment.

In Melbourne my knee surgeon just specialises in knees and my ankle surgeon specialises in the foot and ankle. Let me know if you want their details. I think you would really benefit from seeing a good sports physician. Mine works closely with both surgeons and is very holistic in his approach. Let me know if you want his details too.

During my recovery a number of things have helped me including painkillers, going to a hydro pool, clinical pilates, a regular gym program, surgery and physio. On my ankle I have had 2 ankle reconstructions. As for my knees I've had a number of operations to address my patella instability. The last one about 4 months ago was a trochleoplasty which has made a massive difference.

Probably the worst thing you could do is give up your job. It is important to keep life as normal as possible when going through something like this.

I hope this helps.  :)
« Last Edit: September 14, 2008, 11:43:53 AM by kjwilkin »
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 allie

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Re: 10 months on crutches - Please help me!
« Reply #7 on: September 14, 2008, 02:22:26 PM »
Thanks KJ,

Because of my job I am unable to travel to Australia at the moment. (I sometimes wish docs would do internet consultations)  I am going back to the UK at Xmas and will seek more advice then, hopefuly though I won't need to by then. I will try to find a hydrotherapy pool here, we have a pool in my apartment building which  hope to use as I become more mobile, at present I would be unable to get in and out safely.

There is one doctor here who does clinical pilates, Im unsure whether or not to try him as don't know his background and have no recommendations, I don't want to risk further damage.  I don't know much about pilates
 Going back on painkillers seems to be inevitable, though I will wait until my app with the rehab doctor.

It sounds like you have been through a lot- what stage are you at now in your recovery? I am glad to hear you are feeling and doing better.

I will try to continue with my job,it is the most normal thing in my life (i dont go out much otherwise cos I find it so hard to get around) and just hope it is not making it worse.
 
Thanks very much for your help   :D
Pre 1992 Repeated dislocations both knees
1992  bi Lateral Release
2007 dislocation left knee
Dec 07 dislocation right knee
May 08 arthroscopy and MUA
Jun 08  achillies tendon surgery
Jun 09 arthroscopy and MUA
Jul 09 discharged from physio- not working
Jul 09 still on crutches (18/19 months)

Offline arkitect06

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Re: 10 months on crutches - Please help me!
« Reply #8 on: September 14, 2008, 03:03:27 PM »
Allie,

Your story sounds too familiar except that I don't have ankle problems...just my knee.  I had TTT surgery in January and am still on crutches and have been diagnosed with RSD among other problems.  I have just had a procedure done on Thursday that is suppose to give me 6-24 months of pain relief, but it hasn't "kicked in" yet.  After reading all your posts here, I do not see anything about seeing a pain specialist.  I have been seeing one since July and they are there to make sure your pain meds are helping and also doing any procedures that could help.  RSD is a difficult problem for any doctor to treat.  I am in constant pain despite all my pain meds and procedures that I have had.  I have had 3 lumbar sympathetic blocks and just had a radiofrequency lesioning where they heat the nerve using a needle.  Heating it causes a lesion to where it blocks pain signals to the brain.  I am hoping this will help me!!!  I have a post op diary in that section called "Farrah's Fulkerson Osteotomy-Jan 8" if you are interested in following my story.  I have made many friends on KG and am very grateful for their support.  I have met a few others with RSD going through the same problems as we are.  It is just difficult for us to find any pain relief no matter what we do. 

Anyway, my suggestion is to ask your OS about getting referred to a pain specialist.  They can properly medicate you and suggest other options.  It's worth a try.  I know you don't want to take medications, but I don't see how you are possibly making it through this without them!!!  I am on so many meds including anti-depressant and sleeping pills to help cope through my daily life.  My OS has made sure that I continue to live my life despite all of this.  Depression can become a big problem if you just sit around and feel sad about this.  Depression causes added pain anyway, so keep living life no matter what. 

Good luck!!!

Farrah
11/16/10 Fulkerson TTT, chondroplasty, LR (Left Knee)
11/17/09 SCS re-implant
7/29/09 I&D
5/7/09 SCS removal b/c of MRSA
12/15/08 & 2/6/09 SCS Revision
10/30/08 Spinal Cord Stimulator Implantation
6/27/08 diagnosed with RSD
1/8/08 Fulkerson TTT, chondroplasty, LR (Right Knee)

Offline Major_Grooves

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Re: 10 months on crutches - Please help me!
« Reply #9 on: September 14, 2008, 10:53:29 PM »
Hi! I'm no knee expert, but I just wanted to drop a note about stopping your pain-killers. Chances are you are probably on anti-inflammatories - so they're not just masking the pain - they will be reducing the inflammation that is causing the pain, and reducing the inflammation helps with healing.

I understand that people want to reduce the amount of chemicals in their bodies, but, taken sensibly, I'm a big fan of NSAIDs!


Offline allie

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Re: 10 months on crutches - Please help me!
« Reply #10 on: September 15, 2008, 07:46:15 AM »
Hi Farrah, I was on as many drugs as you, NSAID's, morphine, sleeping pills, stomach protectors and something for the nerves or nerve endings.  I found that I have had reactions to a lot of them- when I was on steriods in hospital I had very bad reactions which caused my blood pressure to become very high.  After leaving hospital my meds were a little reduced but I spent around 3 days of every week sick because of them, that why I decided to stop taking them- I think a referral back to the pain clinic may be useful just to check out alternatives.  I attended the pain clinic whilst I was in the hospital as I was on PCA via IV which had to be monitored daily.

I am not really coping without them, you are right!!  If the pain was under control a bit more I might enjoy day to day activities.   I feel like I am trying very hard not to  just sit around and feel sad and not get to the point where I give up and stop trying to get back to ( semi) normal and talking to others on this board really helps with that.  I will be reading your story this afternoon.

Major Grooves thanks for the note about NSAID's perhaps I could just try them for a while without all the other meds.  I am glad I didnt need your advice about dressing for surgery- I had to wear a hairnet for my surgery so your story really made me laugh !!

Thank-you
Pre 1992 Repeated dislocations both knees
1992  bi Lateral Release
2007 dislocation left knee
Dec 07 dislocation right knee
May 08 arthroscopy and MUA
Jun 08  achillies tendon surgery
Jun 09 arthroscopy and MUA
Jul 09 discharged from physio- not working
Jul 09 still on crutches (18/19 months)

Offline Silkncardcrafts

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Re: 10 months on crutches - Please help me!
« Reply #11 on: September 15, 2008, 08:46:00 AM »
Hi Allie,

First of all, don't wait till you see your rehab doctor before you start taking the painkillers again. You need the get the pain under control again.

I would suggest you see a sports physician rather than a pain specialist. I have found a site for the Korean Society of Sports Medicine. However, I can not read Korean !!! Here's the link, http://www.sportsmed.or.kr/ They should be able to give you some names of some sports physician/doctors.

As for clinical pilates, I would definitely give it a go. If you can do it with a physiotherapist. It is unlikely to cause any more damage. Pilates is a very gentle form of exercise. Walking in a hydro pool is great too. Your body is supported in the water and will find you can a lot more.

I hope this helps.  :)
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 allie

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Re: 10 months on crutches - Please help me!
« Reply #12 on: September 15, 2008, 09:48:38 AM »
Thanks KJ
I am back at PT tomorrow so will ask about pain killers then, I don't think it will just improve by itself at this point!! Thanks for the link- I will check it out for more information, I don't korean either so I will ask someone at work to translate it for me!  It was very kind of you to take the trouble to look for this for me.  I will try contacting a clinical pilates physio this week...no luck with the hydro pool yet but I will keep trying to find one, just to have some freedom of movement in water would make me feel a lot better!!!

Thank-you so much for all your concern and help- It does help a lot!!!

Pre 1992 Repeated dislocations both knees
1992  bi Lateral Release
2007 dislocation left knee
Dec 07 dislocation right knee
May 08 arthroscopy and MUA
Jun 08  achillies tendon surgery
Jun 09 arthroscopy and MUA
Jul 09 discharged from physio- not working
Jul 09 still on crutches (18/19 months)

Offline Silkncardcrafts

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Re: 10 months on crutches - Please help me!
« Reply #13 on: September 15, 2008, 11:42:22 AM »
Hi Allie,

No worries, I know what you are going through.

When I lived in the UK I dislocated my shoulder when I fell on some snow that had iced over. I was so scared about going to a NHS hospital or doctor that I waited 2 weeks until I go the name of a sports physician in London. Soon after that a new sports medicine clinc called Pure Sports Medicine opened and was able to see an Australian sports physician there who was good with shoulders. If you ever need someone good in London www.puresportsmed.com have some great sports physicians/doctors and physios. I ended up coming back to Melbourne to surgery on my shoulder as physio wasn't going to fix my problem.

There must be a hydro pool somewhere. I hope you can find one.

Let us know how you go with PT tomorrow.  :D
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 allie

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Re: 10 months on crutches - Please help me!
« Reply #14 on: September 15, 2008, 12:31:36 PM »
Thanks again KJ
I will let you know how I get on tomorrow.  I will check out sports med in preparation for when I go back to the UK for the Christmas holidays. Still looking for hydro pool... :D :D
Pre 1992 Repeated dislocations both knees
1992  bi Lateral Release
2007 dislocation left knee
Dec 07 dislocation right knee
May 08 arthroscopy and MUA
Jun 08  achillies tendon surgery
Jun 09 arthroscopy and MUA
Jul 09 discharged from physio- not working
Jul 09 still on crutches (18/19 months)