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Author Topic: Observations on arthrofibrosis  (Read 1308 times)

Offline DogfacedGirl

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Re: Observations on arthrofibrosis
« Reply #15 on: September 12, 2017, 02:30:20 PM »
Wow, you've got a lot going on Clarkey, at the ripe old age of 39. I had severe arthritis of the knees at 35, so I can understand how hard it is having that type of health problem.

That's a really long time to wait for a report, I hope the knee report doesn't take that long. In Australia we don't get reports, we're supposed to understand and remember everything from a consultation, but it's a good idea to write it down and formalise it all in a report.

Are you doing research into autism and the legal system? It would be an interesting area.

Yes, I'm still going well on the fish oil and low dose aspirin, thanks. I did a heap of gardening today which is satisfying and I really enjoy it, although I have to wear a good mask and gloves which isn't so nice. I wouldn't have been able to do much gardening before because of my knee flaring up, especially after a walk the day before.
Kay
1999 Osteoarthritis both knees, chondroplasty
2004 MACI graft L knee
2005 MACI graft both knees
2007 MACI graft R knee
2007 Patella baja
2011 TKR both knees
2011 arthrofibrosis

Offline Clarkey

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Re: Observations on arthrofibrosis
« Reply #16 on: September 12, 2017, 06:56:23 PM »
Hi Kay,

Having severe arthritis at the age of 35 never easy as you have to make changes to your lifestyle by cutting back on activities that aggravate the knees is hard to accept at any age. It always been standard practice to have a written report posted to your GP and the patient from the OS consultation. It has slowed down the waiting time for the report to come back was 3 to 4 weeks and now it 2 to 3 months, makes a pleasant change to see a written report sent on a sheet of paper as nowadays everything is kept on record online or the cloud that more risky that someone can get hold of your personal data. The good old fashioned way getting the letter in the post that I have kept in a folder since 2007 and is almost full is safer.

Here is a link to the ERC Voices Project that I been chosen to take part in after being unjustly convicted for a minor incident at a hostel I was staying at while my dad had terminal cancer by getting daily emotional, verbal and even physical abuse from the staff that will be explained all in my chapter I have written as a storyteller with my respondent going through the technical legal jargon and the human rights violations that occurred during breakdown and diagnoses of Asperger's in 2004/05.

https://ercvoices.com/2016/09/14/meet-the-storyteller-nicholas-clarke/

https://ercvoices.com/2016/09/15/meet-the-respondent-nell-munro/

I am a much stronger individual since my ordeal and now a volunteer support worker for adults and young people with additional needs that I enjoy doing as I understand what they might be feeling when down in the dumps.

Some Aussies that are participating in the ERC Voices Project.

https://ercvoices.com/2016/10/04/meet-the-storyteller-cath-roper/

https://ercvoices.com/2016/10/06/meet-the-respondent-piers-gooding/

Book launch is October 2018, that will so come round quickly.

[email protected]
RK: PFPS, Arthrofibrosis & Tendinopathy
Scope #3 scheduled 26/01/18
18/07/14 Anterior interval release  
16/11/09 Medial plica excision & fat pad trim
Cortisone injections: R-Hip - FAI 04/04/17  RK 23/12/15, 22/10/15, 13/05/15, 30/03/10, 23/04/09

Offline DogfacedGirl

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Re: Observations on arthrofibrosis
« Reply #17 on: September 14, 2017, 02:02:32 PM »
Hi Clarkey,

I agree, having written records is much better! I've never seen the reports that my GP gets from my surgeon, so the UK is ahead of us there, it should be done here too.

It sounds like you've had a tough time, dealing with your father's terminal cancer would have been hard enough on it's own, and then to have the other major stress on top of that, I can see that you would get to breaking point. It's good to hear that you've been able to turn the experience into a positive, grow from it, and help others as well. So many people cant' do any of that. I hope the workshop goes well, it sounds like the work they're doing is badly needed, but I must say that personally I would be concerned about having surgery before it, in case the healing process wasn't as good as hoped.
Kay
1999 Osteoarthritis both knees, chondroplasty
2004 MACI graft L knee
2005 MACI graft both knees
2007 MACI graft R knee
2007 Patella baja
2011 TKR both knees
2011 arthrofibrosis

Offline Clarkey

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Re: Observations on arthrofibrosis
« Reply #18 on: September 14, 2017, 09:30:10 PM »
Hi Kay,

Thought it would be standard practice to be able to have access to your medical reports as you have the right to know what'S up with your body by asking your GP for a duplicate copy. If you are paying privately for consultations you should always receive the review of your consultation that you paid for or using your insurance that you been paying into. May have to go personally to your GP reception and ask if you can have a copy or call your OS's secretary.

Still no letter for surgery date, will wait until Monday and will call my OS secretary if I have not received a date for my 3rd scope in the post. I agree that if it falls close to 20th November when I fly out will have to postpone the surgery which puts a damper on my Birthday and Christmas celebrations and would have to then wait till January. It's only a short flight so DVT should not be a problem its the walking, standing and sitting around the airport and public transport would be too much strain post-op. Early to mid October would still be ok to go ahead with surgery any later then will ask to go ahead in January. Want to enjoy Christmas and New Year celebrations having a few pints of lager lol, that not great post op if you are prone to scarring!

[email protected]
RK: PFPS, Arthrofibrosis & Tendinopathy
Scope #3 scheduled 26/01/18
18/07/14 Anterior interval release  
16/11/09 Medial plica excision & fat pad trim
Cortisone injections: R-Hip - FAI 04/04/17  RK 23/12/15, 22/10/15, 13/05/15, 30/03/10, 23/04/09

Offline DogfacedGirl

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Re: Observations on arthrofibrosis
« Reply #19 on: September 16, 2017, 08:25:51 AM »
Good luck getting your appointment date Clarkey, it sure does help to be able to plan things.

I'm off tomorrow to see Dr Paterson, I won't be taking an internet device with me, so I'll post an update late next week on how it all went.
Kay
1999 Osteoarthritis both knees, chondroplasty
2004 MACI graft L knee
2005 MACI graft both knees
2007 MACI graft R knee
2007 Patella baja
2011 TKR both knees
2011 arthrofibrosis

Offline Clarkey

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Re: Observations on arthrofibrosis
« Reply #20 on: September 19, 2017, 06:57:02 PM »
Hi Kay,

Hope you consultation went well and got some good advise and benefits from seeing Dr Paterson advising your differently from previous OS's. Giving it a few more days longer before calling the hospital to check what date my 3rd scope is scheduled for. Would be stupid to have it done near to my important conference in Ireland that I have been looking forward to all year and cannot miss or will jeopardise my book chapter. Surgery would have to fall near to that date that's always the way in life, falling at the wrong time of the year.

[email protected] 
RK: PFPS, Arthrofibrosis & Tendinopathy
Scope #3 scheduled 26/01/18
18/07/14 Anterior interval release  
16/11/09 Medial plica excision & fat pad trim
Cortisone injections: R-Hip - FAI 04/04/17  RK 23/12/15, 22/10/15, 13/05/15, 30/03/10, 23/04/09

Offline DogfacedGirl

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Re: Observations on arthrofibrosis
« Reply #21 on: October 01, 2017, 01:13:31 PM »
Hi Clarkey,
Have you come to a decision about your knee surgery?

Patients Like Me have added arthrofibrosis as a condition to their web site, but you may not see it as a condition yet on their front page for conditions. I'm not sure why, but see
https://www.patientslikeme.com/conditions/2991-arthrofibrosis/overview

It would be fabulous if you can all add your data to this site, then we can all see what works for whom, and what the outcomes of treatments such as MUAs, surgery, fish oil etc have been, with the stats automatically generated. The more data that is added, the stronger the information that can be gained. My username there is "Bungknee".

They have added some symptoms at my request, although they may need some tweaking, and more probably need to be added. For example, I would like "knee stiffness", a symptom they have added, to be broken down into extension problems and flexion problems. If quite a few of us add our data then we can make more requests about what data is collected, and how.

If you belong to other sites that deal with arthrofibrosis, please do pass this on, that would be great!

It has taken me a while to find my way around the site, including where to find my messages. It's kind of obvious really, at the top right hand side, but I"m not on forums usually  :)

I hope you've all had a nice weekend.
Kay
1999 Osteoarthritis both knees, chondroplasty
2004 MACI graft L knee
2005 MACI graft both knees
2007 MACI graft R knee
2007 Patella baja
2011 TKR both knees
2011 arthrofibrosis

Offline Clarkey

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Re: Observations on arthrofibrosis
« Reply #22 on: October 01, 2017, 10:40:04 PM »
Hi Kay,

I phoned up my OS's secretary last week to see when my 3rd scope on my right knee was scheduled and she said towards the end of October or early November which fell close to my book chapter conference at http://www.nuigalway.ie/ in Southern Ireland from 20th November to 23rd November. Typical the most important event for me in the year happens to fall close to my surgery. I told the secretary to postpone the surgery until January, I want to enjoy Christmas without restrictions.

I am having more problems pain wise with my right hip cam impingement as it flares up as soon as I try to do something more physically active. Now that I am unemployed once again making money doing gardening around my neighbourhood which is flaring up both knee and hip so cannot earn money! My physio told me to do less hours putting less strain onto my hip. I am seeing a lady that I known for many years at a disability advocate group tomorrow morning to get advise from her. Might have to claim disability benefit which I do not like doing but have no choice right now. No one will want to take me on doing gardening jobs or support work again with ongoing joint problems as I am a risk and liability.

Just want this year to fly now, I had enough negative events happening, my best friends dad dying suddenly from a heart attack, and a relative with bowl cancer that happened during my job probation period, being told I did not pass probation was a big psychological blow! Sorry to sound all negative,  do not expect sympathy, life can be hard for everyone at times and have overcome what has happened putting it behind me. More peed off losing my job unfairly while going through a rough time, I was doing ok and think they dismissed me to save money that's the root of all evil as my dad would say.

See OS about my right hip 15/12/17 and will make a decision then if I should go ahead with my 3rd right scope on my knee or focus on my right hip first. If I do will be sometime in the 2nd or 3rd week in January, get sharp shooting pain up my leg from the tibia! Something is not right or my OS would not go ahead with a 3rd scope.

Thanks for the link to arthrofibrosis research, I will sign up and participate adding to the data a condition that is on the increase with devastating consequences for sufferers of AF. Be fantastic if we and other patients with AF can gather up data to hopefully find a cure or a way to stop it spreading with OS's finding a way round a condition that they are struggling to keep under control.

Hope you are doing ok, sorry for being mainly negative on your forum posting just needing to let off some frustration. Writing seems to help which is why I am writing a chapter for the https://ercvoices.com/ what happening now is nothing in comparison to 12 years ago that will all be revealed in October 2018 in my book chapter. Got use to setbacks in life and have come out a stronger person with more sympathy and understanding towards individuals with mental health needs.

[email protected]
« Last Edit: October 01, 2017, 11:40:04 PM by Clarkey »
RK: PFPS, Arthrofibrosis & Tendinopathy
Scope #3 scheduled 26/01/18
18/07/14 Anterior interval release  
16/11/09 Medial plica excision & fat pad trim
Cortisone injections: R-Hip - FAI 04/04/17  RK 23/12/15, 22/10/15, 13/05/15, 30/03/10, 23/04/09

Offline DogfacedGirl

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Re: Observations on arthrofibrosis
« Reply #23 on: October 02, 2017, 02:04:51 AM »
I'm sorry you're having a hard time of it Clarkey, pain and arthrofibrosis makes working very difficult, and you've got emotional hardship on top of that. At least you have the book chapter to look forward to, you have a good approach, and you can always vent here.

I think the link to Patients Like Me I gave before will only work if you're logged in. Here is one I hope will work before registering:
https://www.patientslikeme.com/conditions/2991

I hope the data we add can help everybody on this forum because they will have direct access to it, and in time there may be a research project to look at the implications in terms of treatments and prevention. As I mentioned before, it needs some work to improve the categories for symptoms etc, but when you start to enter your details you can type things like "stiffness" into the box and it will come up with that suggestion, which can then be added.
Kay
1999 Osteoarthritis both knees, chondroplasty
2004 MACI graft L knee
2005 MACI graft both knees
2007 MACI graft R knee
2007 Patella baja
2011 TKR both knees
2011 arthrofibrosis

Offline Clarkey

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Re: Observations on arthrofibrosis
« Reply #24 on: October 02, 2017, 04:46:58 PM »
Hi Kay,

KG discussion forum is a good place for members to vent their frustrations, I have signed up to your link you gave about arthrofibrosis with support and advice that you kindly set up on the forum. My users name is nickwclarke as clarkey was already taken. I added you Bungknee and can now share our thoughts and experiences.

I think the link to Patients Like Me I gave before will only work if you're logged in. Here is one I hope will work before registering:https://www.patientslikeme.com/conditions/2991

I hope the data we add can help everybody on this forum because they will have direct access to it, and in time there may be a research project to look at the implications in terms of treatments and prevention. As I mentioned before, it needs some work to improve the categories for symptoms etc, but when you start to enter your details you can type things like "stiffness" into the box and it will come up with that suggestion, which can then be added.
Kay

Not all bad news my relative had surgery to remove her cancerous intestine bowl and has just been given the all clear from the consultant that she cancer free last week Thursday. I am entitled to claim Employment and Support Allowance (ESA) that one can claim if your illness or disability affects your ability to work. Limited to jobs I am qualified due to my right knee and hip problems and my autism with a higher anxiety making it a challenging ordeal fitting into work settings. I am not a benefit cheat have proof I have mental and physical health conditions that. Many take advantage that are fully capable to work, once caught they get punished! Feeling the fall force of he criminal justice system.

Looking forward taking part in the Arthrofibrosis section on 'Patients Like Me' will make very interesting hearing other patients with knee arthrofibrosis thanks for setting up the section that should benefit many sufferers of excessive scarring problems.

[email protected] 
RK: PFPS, Arthrofibrosis & Tendinopathy
Scope #3 scheduled 26/01/18
18/07/14 Anterior interval release  
16/11/09 Medial plica excision & fat pad trim
Cortisone injections: R-Hip - FAI 04/04/17  RK 23/12/15, 22/10/15, 13/05/15, 30/03/10, 23/04/09

Offline DogfacedGirl

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Re: Observations on arthrofibrosis
« Reply #25 on: October 06, 2017, 03:46:36 AM »
Thanks for your comments Clarkey, and for joining Patients Like Me, I really appreciate that! It's great news about your relative getting the all-clear for bowel cancer, that would have been incredibly stressful.

I have added an update about Patients Like Me on the "arthrofibrosis research being done" thread at the top, as I thought it fitted better there. I hope more of us join up! It does take some time to find you way around the site and add your data, but its well worth-while for all of us, a terrific resource once we have added our experiences. We won't have to read long threads to see what worked, how well and for whom.
Kay
 
1999 Osteoarthritis both knees, chondroplasty
2004 MACI graft L knee
2005 MACI graft both knees
2007 MACI graft R knee
2007 Patella baja
2011 TKR both knees
2011 arthrofibrosis

Offline Clarkey

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Re: Observations on arthrofibrosis
« Reply #26 on: October 06, 2017, 08:26:24 PM »
Hi Kay,

Patients Like Me will become easier to navigate once I have got use to the layout and format taking time to get to know others with similar health issues and concerns. It is great news about my relative that lost her husband over 25 years ago from cancer, her only son died from a heart attack in 2012. She is in good spirits with a witty sense of humour getting on well with young and older people despite all the setbacks in her lifetime.

Sorry once again for venting my anger on my 1st October posting was having a bad day, writing seems to help release some of the stress and anxiety that had built up over the last 6 weeks. Being unfairly dismissed from my job role as an autism support worker is hard to accept and to move on. Everyone that knows me are shocked and angry at the way they dealt with me, do miss working at the Saturday Club part of my life is missing now. Patients Like Me should have a section about autism getting support and advise from other members in a similar situation.

Hope your section on "arthrofibrosis research being done" on Patients Like Me flourishes well and will add something to your section when I have got use to using the website. Have a good weekend getting cooler in the UK, will be the opposite in Australia getting warmer, feel it more in your joints during the colder months of the year.

[email protected]
RK: PFPS, Arthrofibrosis & Tendinopathy
Scope #3 scheduled 26/01/18
18/07/14 Anterior interval release  
16/11/09 Medial plica excision & fat pad trim
Cortisone injections: R-Hip - FAI 04/04/17  RK 23/12/15, 22/10/15, 13/05/15, 30/03/10, 23/04/09

Offline DogfacedGirl

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Re: Observations on arthrofibrosis
« Reply #27 on: October 09, 2017, 01:33:47 AM »
Hi Clarkey,
No problem, I'm having a bad day myself today. My young dog is very sick with her liver disease, and was pacing the house all night and vomiting regularly. Every time I gave her an opiod painkiller she vomited it up, but she did keep the last one down. It didn't seem to help.

I will probably go quiet on the forum for a while.
Kay
1999 Osteoarthritis both knees, chondroplasty
2004 MACI graft L knee
2005 MACI graft both knees
2007 MACI graft R knee
2007 Patella baja
2011 TKR both knees
2011 arthrofibrosis

Offline Clarkey

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Re: Observations on arthrofibrosis
« Reply #28 on: October 09, 2017, 06:36:33 PM »
Hi Kay,

Sorry to hear about your dog being very unwell, it is never easy when a much loved pet health is deteriorating that are like a family member. I got my pet cat from a rescue centre shortly after my 1st scope in November 2009 she will be 11 on November 18th, hopefully half way through her lifetime. When a pet is young do not expect serious illnesses to happen, can fully understand  why you might take a break from the forum until you are feeling more upbeat again. Hope the vet can do something even if the cost is high it is worth paying a high vet's bill.

[email protected]
RK: PFPS, Arthrofibrosis & Tendinopathy
Scope #3 scheduled 26/01/18
18/07/14 Anterior interval release  
16/11/09 Medial plica excision & fat pad trim
Cortisone injections: R-Hip - FAI 04/04/17  RK 23/12/15, 22/10/15, 13/05/15, 30/03/10, 23/04/09

 















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