Author Topic: Another newbie....stupid arthrofibrosis  (Read 35377 times)

Offline Clarkey

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Re: Another newbie....stupid arthrofibrosis
« Reply #240 on: June 01, 2016, 04:06:13 PM »
Hi,

The people with Arthofibrosis finally found relief with Cryotherapy, You can try that.

Looks like a good option of treatment to try out, looks slightly daunting going in sub-zero temperatures in your underwear! It is like everything in life some treatment can help some patients while for others it does not have any extra benefits.

I am not impressed when I called the hospital PT department this morning enquiring about my scheduled PT appointment. I am on a 9 week waiting list since May 10th, I will not get an appointment until mid-July! It's now becoming stressful the whole knee saga with the long waiting times. I might have to go private to save my insanity or will end up getting agitated and grumpy.

I am usually very placid and patient in nature, I am now finding the long waiting time too stressful. Nine weeks to see a PT is not on, I can understand why one has to wait for a while to see an OS, it should be quicker for a standard PT appointment.

[email protected]
RK: PFS, P.T, maltracking & arthrofibrosis
Scope #3 scheduled October 2017
18/07/14 Anterior interval release  
16/11/09 Medial plica excision & fat pad trim
Cortisone injections: R-hip 04/04/17 R-knee 23/12/15, 22/10/15, 13/05/15, 30/03/10, 23/04/09

Offline faroboy

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Re: Another newbie....stupid arthrofibrosis
« Reply #241 on: June 01, 2016, 10:09:42 PM »
Sorry to hear that you're still suffering Nick.

Hey scuba, how many surgeries did you have with dr. millet? They say he is one of the best doctors to address arthrofibrosis. Why did you require so many surgeries.

I had my surgery last week, and i can almost walk with no crutches this week, but my extrnsion is still lacking and everything looks and feels like the previous arthrofibrosis surgery i had. I don't think this one made a difference. I'm looking for a surgeon who knows what he's doing

Offline Chester57

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Re: Another newbie....stupid arthrofibrosis
« Reply #242 on: June 02, 2016, 12:00:25 PM »
Would just like to point out the fact that it is not necessarily a case of finding a surgeon who "knows what he's doing".  The surgical removal of the adhesions is really not the major issue. Even the "experts" differ in the surgical techniques they utilize. The fact of the matter is no one has found the CAUSE of Arthrofibrosis.  No one knows how to absolutely prevent it from recurring if your body happens to have an exaggerated healing response. Even in the hands of an "expert" you may not achieve the desired results.  No "expert" can guarantee a one and done surgery. They can't guarantee it won't return.  That is obvious from reading posts of people who have seen an "expert" and have required 5, 6, 7 or more surgeries and still aren't cured and then there are those who have had surgery performed by an "expert" and are worse off than before the surgery.
1980 LK open total synovectomy to remove AVM--Undiag AF Begins--MUA-AF & Instability--Debridement-AF--LOA, Synovectomy, Menisectomy, Chondroplasty, M/L Ret Release-AF, Instability & Sublux--MCL, POL, MPFL Allo Recons-AF--LOA, LR, Synovectomy-AF--LOA, M/L Ret Release, Synovectomy-AF

Offline Clarkey

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Re: Another newbie....stupid arthrofibrosis
« Reply #243 on: June 06, 2016, 03:40:18 PM »
Hi All,

Chester, I fully agree with you that it doesn't matter what OS you take on for surgical procedures for patients that are more prone to excessive scarring! AF sufferers may have to wait a while for a prevention or even a cure to eradicate scar tissue from building up excessively. Faroboy, thanks for the sympathy message, Chester has answered your concerns well.

I emailed Prof Snowís secretary as I cannot wait 9 weeks for standard physiotherapy asking for a transferal to BMI Droitwich Spa Hospital thatís local and easier to get to for me. This is where my mum had her left hip replacement, now she needs a left TKR as its now highlighted more as her hip feels great.

It was the former building of Droitwich Knee Clinic that is now based in Bromsgrove about 7 miles north of Droitwich. Why they are calling it Droitwich Knee Clinic makes no sense! Be wiser and more logical to call it Bromsgrove Knee Clinic. My Sports Physician commented that the PT I saw from Droitwich Knee Clinic use old school style methods of PT in 2016. This would have been acceptable and ok a decade ago.

http://www.kneeclinics.co.uk/

I got an email reply within the hour that Prof Snow will make a transfer me for private PT in Droitwich Spa Hospital where he works privately once a week. Why it takes longer to see a PT than an OS on the NHS makes no common sense! They have about 20 PT's and about 8 OS's that deal with knee complaints.

Hopefully I will get my PT appointment, been waiting since 10th May for an appointment that been frustrating and stressful the long waiting times. If they sent me a letter pre-warning me that there a 9 week wait then my stress and anxiety levels would have fallen.

[email protected]
« Last Edit: June 06, 2016, 11:02:05 PM by Clarkey »
RK: PFS, P.T, maltracking & arthrofibrosis
Scope #3 scheduled October 2017
18/07/14 Anterior interval release  
16/11/09 Medial plica excision & fat pad trim
Cortisone injections: R-hip 04/04/17 R-knee 23/12/15, 22/10/15, 13/05/15, 30/03/10, 23/04/09

Offline Scubagrl4

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Re: Another newbie....stupid arthrofibrosis
« Reply #244 on: June 10, 2016, 02:33:38 AM »
Hi all,
I love that this posting has become a place for all of us to hang out even though it isn't for the best reasons. Faro, I had 2 surgeries and an insufflation with Dr. Millett. I suspect that I required multiple surgeries because the inflammatory process was not under control when I had my first surgery with him. My knee was bright red and hot going into surgery. The problem is that with the amount of pain that I had, it most likely would not have diminished without that initial surgery. And I just couldn't take it anymore. It was a bad cycle. The first surgery made a huge difference but just didn't result in enough function for me. So we tried the insufflation which improved things some more. Then, I was a complete idiot and pushed my knee too hard at a conference for work. That brought on more swelling and heat. Got it drained but managed to grow more scar tissue. This last time, I think he was able to remove the scar tissue in my knee that was in a calmer state and it has been amazing. Huge difference in the progression with PT and with daily function. I can't tell you for sure that seeing a so called expert was the only way to go but it worked for me. I think the difference that I noticed was the comfort level that he and his staff had with dealing with this issue was incredible. Also the customer service was better. They gave me the support and reassurance to keep pushing to regain function and not give up. I'm not saying that they are the only people qualified to treat this problem but it was the right choice for me. Every recommendation made when it came to surgical intervention led to significant improvements. I hope that you find relief soon no matter who it is with. I know that finding a doctor and PT that listens to you is incredibly important. Best of wishes to all of you.
4/14/14 L ACL rupture, grade 2+ MCL tear
6/6/14 ACLr allograft
9/4/14 MUA
10/6/14 LOA/AIR, synovectomy, lateral/medial retinacular release, partial lateral menisectomy, chondroplasty, deep tissue
biopsies.
11/20/14 insufflation, MUA
10/19/15: LOA/air, PLM, chondro, synovectomy, med/lat releases

Offline Clarkey

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Re: Another newbie....stupid arthrofibrosis
« Reply #245 on: June 13, 2016, 04:38:34 PM »
Hi Scuba,

Good to see you posting again, persistence and patience does pay off in the end. It's not always the OS's fault, 9 times of 10 they give the correct type of treatment required for a specific knee complaint.

I am just the same ending up overdoing things that aggravate my right knee. 1st impressions when seeing another OS for a 2nd opinion are important, before going ahead with surgery if it's suggested.   

I am in two minds what to do next about going for a 2nd opinion, I have pre-booked to see another OS who also works in Sports Medicine, he works locally to where I live in the County of Worcestershire. If I decided to go ahead I will be seeing him next week on Tuesday 21st June, Summer solstice.

My OS is discussing with my Sport Physician if he can speed up my ESWT. I have been booked in for last week of September. Hopefully he can get me to have electric shock wave therapy earlier, I have already been booked in for a private physiotherapy appointment.

I will wait and see what happens in the next couple of days, giving an update on my dairy on Saturday 18th June, giving more in depth information.   

[email protected]
« Last Edit: June 14, 2016, 09:50:37 AM by Clarkey »
RK: PFS, P.T, maltracking & arthrofibrosis
Scope #3 scheduled October 2017
18/07/14 Anterior interval release  
16/11/09 Medial plica excision & fat pad trim
Cortisone injections: R-hip 04/04/17 R-knee 23/12/15, 22/10/15, 13/05/15, 30/03/10, 23/04/09

Offline Clarkey

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Re: Another newbie....stupid arthrofibrosis
« Reply #246 on: July 25, 2016, 04:18:24 PM »
Hi Scuba,

Hope everything is ok with you, suppose it is a good sign that you are posting less. I am slowly making slow progress with my right knee problems in getting it treated in a surgical way if the PT and ESWT fails to do the trick. I have started what's been recommended by my present OS, Sports Physician and 2nd OS opinion by doing isometric holds, x45 3 times twice a day holding my right knee at 30 degrees.

My nieceís boyfriend told me that they have to go through stages for legal reasons by doing none invasive treatments 1st to cover themselves, in case surgery made my right knee worse rather than better. Six to nine months of PT to see any benefits or not. ESWT treatment 3 times with the 1st session on 28/09/16.

I think it is the time of year when the knee pain is minimal, I am able to walk longer distances but the pain and discomfort is still very much there! Still very much anterior knee pain that becomes sore and tender if I do too much gardening or lifting. Larger strides is out of the question as straight away the pain returns. 

I know there is a patella tendonitis specialist OS down in Bristol, It is only an hour drive to the clinic from where I live in Droitwich Spa of around 60 miles. Mr David Johnson has a worldwide reputation for patella decompression surgery. The same surgical procedure has been suggested by my current OS if conservative treatments fail. I do have a lot of respect with the way my OS has been dealing with a tricky knee condition, he is more than capable to do the surgery.

http://www.bristol-knee-clinic.co.uk/boc/patients/patella_tendonitis.asp

It sometimes beneficial to see an OS that has specialist knowledge and expertise in chronic cases of patella tendonitis. I need to be fit for when I have an interview to hopefully become a play worker for an autistic organisation for young people on the autistic spectrum.

[email protected]
RK: PFS, P.T, maltracking & arthrofibrosis
Scope #3 scheduled October 2017
18/07/14 Anterior interval release  
16/11/09 Medial plica excision & fat pad trim
Cortisone injections: R-hip 04/04/17 R-knee 23/12/15, 22/10/15, 13/05/15, 30/03/10, 23/04/09

Offline Scubagrl4

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Re: Another newbie....stupid arthrofibrosis
« Reply #247 on: August 04, 2016, 03:39:17 AM »
Hi clarkey,
It is good to hear that you have at least made some peace with the progression of your treatment. I'm sure that is no easy feat and that you will still battle with all of those thoughts running through your head. I'm still fighting some stiffness on and off but am not surprised as ive been beating it up more than usual. Doing some traveling and some moving which can be tough on the old knees. But I've made peace with that myself. I know I will never be in the shape I was in the past so I'm just trying to maximize my outcome. I hope you continue to maintain some of that patience you have found  :)
4/14/14 L ACL rupture, grade 2+ MCL tear
6/6/14 ACLr allograft
9/4/14 MUA
10/6/14 LOA/AIR, synovectomy, lateral/medial retinacular release, partial lateral menisectomy, chondroplasty, deep tissue
biopsies.
11/20/14 insufflation, MUA
10/19/15: LOA/air, PLM, chondro, synovectomy, med/lat releases

Offline Clarkey

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Re: Another newbie....stupid arthrofibrosis
« Reply #248 on: August 31, 2016, 01:44:19 PM »
Hi Scuba,

I have been extremely busy the last couple of weeks with family commitments and volunteering a young peopleís autism holiday club. I am now doing what I been advised to do by two OSís and Sport Physician of isometric holds for 4 months. It is helping me limp less than before, the anterior knee pain is still very much there. I am restricted in what I able to do when I am helping out at the autism group, not being able to walk fast and run is a hindrance.

I got a good report back from the leader of the young peopleís autism group, my concern are, if my right knee does not improve, surgery will be the only option left. I am hoping around Christmas that I am offered a job as a Playworker. Just be annoying after being out of employment since June 2012 that I might potentially be on sick leave.

ESWT scheduled end of September 3 sessions in total, will see if it as good as it has been made out to be, for patella tendonitis. See if I am wrong or right if it has been overrated by many OS's! Apart from one down in Bristol, he swears by patella decompression surgery with a high success rate with the patients he has operated on.

I am glad that you have final gained improvements post-op, you will always find that your operated knee will never be 100% ok.

[email protected]
RK: PFS, P.T, maltracking & arthrofibrosis
Scope #3 scheduled October 2017
18/07/14 Anterior interval release  
16/11/09 Medial plica excision & fat pad trim
Cortisone injections: R-hip 04/04/17 R-knee 23/12/15, 22/10/15, 13/05/15, 30/03/10, 23/04/09

Offline Clarkey

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Re: Another newbie....stupid arthrofibrosis
« Reply #249 on: September 12, 2016, 04:58:35 PM »
Hi Scuba,

I hope you are doing ok, I know you have endured numerous highs and lows in getting the right sort of treatment for your specific knee condition. The NHS in the UK with all the cutbacks has changed OS's attitudes towards surgical procedures.

Back in 2009 and 2014 when my right knee was causing a few niggling pains I ended up having surgery. I am now walking at a slower pace in comparison to pre-op to scopes 1 & 2 with more limitations. My PT still thinks carrying on with PT will fix my right knee injury finally.

I cannot see that happening, I have been doing PT for over 18 months with various private PT's. I know you had to push hard to get your knee injury sorted.

[email protected]
RK: PFS, P.T, maltracking & arthrofibrosis
Scope #3 scheduled October 2017
18/07/14 Anterior interval release  
16/11/09 Medial plica excision & fat pad trim
Cortisone injections: R-hip 04/04/17 R-knee 23/12/15, 22/10/15, 13/05/15, 30/03/10, 23/04/09

Offline Scubagrl4

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Re: Another newbie....stupid arthrofibrosis
« Reply #250 on: January 04, 2017, 03:08:50 AM »
Hello All,
My apologies for disappearing for such a long period of time.  As my knee continues to heal, I find myself out living life instead of stuck on the computer like I used to be.

But, I did want to jump back on here to post...to let you all know that I finally feel that I can count myself as one of the success stories.  I honestly never thought that this would happen.  I was convinced that I would be limping and disabled forever.  But...things are looking up.

I went diving last week!!  If you have put up with reading through these posts through the whole thing, you might remember that this was the one thing that I just had to get back to doing.  My fiance and I were able to do 8 wonderful dives in four days.  I spent so much time smiling that my mask kept filling up with water!  I also returned today to see my PT and I was able to jog for a few minutes (my leg still feels like it weighs 200 lbs though).  But, jogging was something I never thought I would do again.  So, I'm looking forward to doing more of this.  I have made peace with giving up volleyball for good which is what landed me here in the first place.  I will and do really miss it, but I like being able to walk normally a bit more.  Now that I look more normal, I'm asked constantly to play.  This is hard, but again, a compromise that I'm willing to make. 
As far as workouts go, I'm able to do 50 or more minutes of cardio a day along with 20-30 minutes of lifting weights.  If I swim, I can swim for an hour or more with fins and also know that I can swim against currents in the ocean and can function on a rocking boat. 

I think that something that is important to pay attention to is the timeline with some of these things.  I am a year and a few months out from my last surgery.  If I remember right, my rehab protocol had me jogging around the 6 month mark or so...maybe even earlier.  No way could I have done that.  It has taken a LONG time to feel normal.  I'm not at all telling you this to frustrate you.  I'm pointing this out because it is so important to pay attention to how your knee is feeling and to make decisions according to how you are feeling.  I tried so hard to force my knee into being where it was supposed to be according to my protocols.  When I finally gave in and just did what my knee was capable of, it started calming down and improving.  Slow and steady really does win the race with this in my opinion. 

I wish you all the best and hope everyone finds their success story.  And, for all of you who reached out to me while I was hurt...THANK YOU!!!  You all have no idea how helpful it was to have all of you to talk to.  I am going to try to do a better job of getting back on here when I can to check in.

Scubagrl
4/14/14 L ACL rupture, grade 2+ MCL tear
6/6/14 ACLr allograft
9/4/14 MUA
10/6/14 LOA/AIR, synovectomy, lateral/medial retinacular release, partial lateral menisectomy, chondroplasty, deep tissue
biopsies.
11/20/14 insufflation, MUA
10/19/15: LOA/air, PLM, chondro, synovectomy, med/lat releases

Offline Clarkey

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Re: Another newbie....stupid arthrofibrosis
« Reply #251 on: January 12, 2017, 05:44:42 PM »
Hi Scuba,

It nice to hear some a positive story for a change on KG, looks like 2017 is the 1st full year that you can feel more yourself once again by returning back to scuba diving. Good luck with the year ahead, happy scuba diving throughout 2017.

[email protected]

RK: PFS, P.T, maltracking & arthrofibrosis
Scope #3 scheduled October 2017
18/07/14 Anterior interval release  
16/11/09 Medial plica excision & fat pad trim
Cortisone injections: R-hip 04/04/17 R-knee 23/12/15, 22/10/15, 13/05/15, 30/03/10, 23/04/09

Offline faroboy

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Re: Another newbie....stupid arthrofibrosis
« Reply #252 on: July 14, 2017, 05:19:15 AM »
Hey Scuba,

I'm wondering why you can't play volleyball if you can jog? Also, can yo lift weights using your legs. like doing weighted squats, etc.

After my second scar removal tissue my knee actually got worse. It's crunching and grinding all the time. And it snaps every time i take a step. After a few minutes, it starts to get painful. And of course i still don't have full extension.

Not sure where to go from here. I'm getting an mri done because there could be cartilage damage at 27 years of age. So, that makes it that much worse

Offline jackson7

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Re: Another newbie....stupid arthrofibrosis
« Reply #253 on: July 14, 2017, 05:44:30 PM »
...I think that something that is important to pay attention to is the timeline with some of these things.  I am a year and a few months out from my last surgery.  If I remember right, my rehab protocol had me jogging around the 6 month mark or so...maybe even earlier.  No way could I have done that.  It has taken a LONG time to feel normal.  I'm not at all telling you this to frustrate you.  I'm pointing this out because it is so important to pay attention to how your knee is feeling and to make decisions according to how you are feeling.  I tried so hard to force my knee into being where it was supposed to be according to my protocols.  When I finally gave in and just did what my knee was capable of, it started calming down and improving.  Slow and steady really does win the race with this in my opinion...

Scubagrl
that's some of the best info I've seen on this site.  My PT had me doing all sorts of stupid exercises  that were causing pain. Even my OS told me I could ride a stationary bike...which was blowing up my knee every time I rode lightly for even 5 minutes (told me to stop yesterday after he saw the big lump of scar tissue all these incorrect exercises have caused).

 Swimming is the only thing that seems to be helping me.  It lightly uses the muscles, while simultaneously  cooling the knee.  Walking to and from my car hurts, but I think it's the only trade-off that's worth it (and, of course, walking to and from the freezer for ice packs).
Dec 2015: slow speed bicycle crash (wet leaves)
Jan 2016: a zillion x-rays & 2 MRIs only showed tendinosis
Mar 2016: bone scan showed "uptake" in all compartments
Aug 2016: cortisone shot (did nothing)
Mar 2017: diag scope (partial med meniscus resection, med fem chondroplasty, synovectomy)

Offline Clarkey

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Re: Another newbie....stupid arthrofibrosis
« Reply #254 on: July 14, 2017, 10:28:16 PM »
Arthrofibrosis is difficult to keep under control if you are more prone to excessive scarring, I tried all none invasive treatment options since my last scope in July 2014. It was going really well post-op only to be ruined by a physiotherapist that made me do too much in a one session! He should be struck off after misconduct at a private hospital he worked at for 25 years and was sacked, He set up his own independent physiotherapy. I was left in the gym unattended for 20 minutes while he saw another client.

27 is a time when you want to be at your prime and can see how frustrating it must be for you, I  have not been able to run since January 2013. 4.5 years is a long time period and wiling to take a risk and gamble to go through another surgery of AIR and patella decompression surgery as the scar tissue has attacked the patella tendon. You can take a gamble like am going through another scope, if the cartilage is damaged microfracture surgery can be of a benefit, returning to light running is better than not being able to run at all.

Whatever you decide to do next is up to you, surgery is only done if an OS can see specific problem where surgery might help improve the condition. If I can walk at a quicker pace instead of limping I would be happy with the surgery outcome. I has an increase in joint effusion after my 3rd MRI that was a significant finding up to then my OS was not willing to risk a 3rd scope. Never give up hope is easy to say, it can happen after reading Scuba success story has inspired me fight through AF.

[email protected]
RK: PFS, P.T, maltracking & arthrofibrosis
Scope #3 scheduled October 2017
18/07/14 Anterior interval release  
16/11/09 Medial plica excision & fat pad trim
Cortisone injections: R-hip 04/04/17 R-knee 23/12/15, 22/10/15, 13/05/15, 30/03/10, 23/04/09

 

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