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Author Topic: Immobile fat pad and unable to walk. What do I do next?  (Read 1271 times)

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Offline CaliCoast

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Immobile fat pad and unable to walk. What do I do next?
« on: February 02, 2022, 10:12:33 PM »
Hi, I had a meniscectomy and fat pad resizing surgery in April 2021 and 10 months later am still unable to stand. Post-surgery, I lost the ability in my left knee to hit full 0% extension (I can get to about 20%) and am only able to limp for 30 seconds at a time. I'm desperate to figure out a strategy to walk again, and wanted to share my story. Iíve tried to take an investigative approach towards treatment and hoped this forum could help. My current challenge is diagnosing the primary cause of my limited ROM post-surgeryóis it arthrofibrosis, reactive arthritis, or impingement alone?óso I can build a treatment plan.

It started in 2018 when I noticed dull joint pain while standing for long periods. This got progressively worse after runs in the following years, particularly my anterior knee discomfort in my left knee. In April 2020, I went surfing and twisted my left knee. The next day I woke unable to walk on my left knee due to swelling and anterior knee discomfort.  I saw three separate orthopedic surgeons to get a broad opinion. They ran an MRI and found a small tear on my lateral interior discoid meniscus. Two of the surgeons claimed the tear was too small to create such a challenge to stand and walk, and attributed it to patellar tracking dysfunction or general over-use. The third surgeon thought the small tear was causing inflammation in my knee capsule and was the root cause of my issue. She recommended a meniscectomy.

I took a year to try physical therapy and had limited success. My knee improved greatly by August of 2021 and I was walking several hours a day. Yet, I inflamed the knee after a long day of use in October that took me back to the start. I poured myself into PT the second half of 2021--probably over doing it--yet was never able to get back to where I was. The PT itself seemed to aggravate my knee. I resigned to trying the surgery in April 2021 without any other foreseeable options.

I was able to stand and walk again for the first week after surgery, and had great optimism for recovery. Yet,  started to slowly lose my ability to fully extend by the end of the first month. It started to become clear that the meniscus tear wasn't causing my knee issue, and the surgery had drastically made my knee worse. Before the surgery, I could fully extend to zero, walk for 15 minutes with discomfort, yet post surgery, I'm no longer able to stand or extend to zero.

I started to look into other causes such as rheumatoid arthritis or severe hoffa's syndrome. I tested negative for RhA but my doctor said that my joints showed inflammation in my hands and feet. She diagnosed me with reactive arthritis in July 2021 (although this is a best guess catch-all diagnosis since there are no conclusive tests for this). I was really hopeful this was the cause since I do have tendon and joint issues beyond my knee. Iíve since been on multiple medications for reactive arthritis (Humira, etc.) yet none have worked, and had to stop them due to side-effects, bringing me back to square one again.

My overall theory of my condition is such: I likely had systematic inflammationócaused by an immune disorder or food sensitivityóover the last 10 years that localized in my left knee fat pad (among other places). This lead to fat pad swelling that then lead to mechanical impingement and then more swelling in a vicious cycle. I made the mistake to get meniscus and fat pad resizing, which dramatically worsened my hoffaís syndrome and removed my ability to stand in extension.

Now Iím stuck at a crossroads. Knee extension is limited by a swollen and immobile fat pad but I donít know the cause or interplay of causes. Is the cause (1) excessive scarring (arthrofibrosis) that will remain irrespective of stretching, diet, or exercise where only viable option is surgical scar removal (2) systematic inflammation preventing the healing of my fat pad post-surgery that if I address then I will heal overtime or (3) mechanical impingement is the primary issue for my swollen fat pad, and Iíll need to continue to wait overtime for reducing the fat pad size through limited exercise. I realize that all three issues likely appear together, but identifying the keystone here will help me determine if surgery is my only option.

Iím not sure how I can determine or differentiate what is limiting my knee extension and causing my fat pad inflammation and mobility. Has anyone had any experiences like mine? How did you identify the cause? Did you find any strategies to regain mobility or was your new disability permanent?

Thank you so much for your help and reading my post!

Offline DogfacedGirl

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Re: Immobile fat pad and unable to walk. What do I do next?
« Reply #1 on: February 03, 2022, 08:03:19 AM »
Hi,
I'm really sorry about your knee, you're between a rock and a hard place, with really bad AF.

I have a few suggestions, but as you know, nobody can promise a cure and managing symptoms may be the best outcome. You're clearly well informed so this won't be news to you.

Regarding your question, is it mostly excessive scarring, systematic inflammation or mechanical impingement of the Hoffa's fat pad, you're probably correct in thinking it is all three, and because the body's systems are tightly connected and they can't be put into separate boxes. You will almost certainly have excessive scar tissue and the myofibroblast cells that make it. Myofibroblasts pump out inflammatory cytokines and sooner or later the scar tissue will impinge into the joint.

You can read more about the Hoffa's fat pad the points I'll summarise below at https://arthrofibrosis.info
 
Here are some suggestions, you have no doubt thought of many of these and had them done.
1. An MRI that specifically requests a comment on the condition of the Hoffas. Unless radiologists are directed to this they usually won't comment, even if there is a problem.
2. Test for infection in the joint using an aspirated sample of synovial fluid. This is best performed by somebody experience in this procedure (not a general practitioner) and the fluid should have a PCR test in addition to a culture test. Culture on it's own is not adequate.
3. See a rheumatologist and test for a range of autoimmune conditions, especially connective tissue disorders. Test the systemic levels of inflammatory cytokines, especially TNF-α, IL-1 and IL-6. If TNF-α is elevated, which is likely, you may want to try Simponi or one of the alternative TNF-α antibody treatments other than Humira. Some people have found Simponi helpful to give them more pain-free leg time.
4. Blood tests for essential nutrients including iron, vit D, magnesium and a urine test for iodine. Supplement any of these nutrients if needed, your immune system can't operate properly if levels are low.
5. Get some sunshine without burning. This may be difficult in your winter, in which case a near infrared lamp may help. Recent research shows that Near Infrared Radiation is necessary for cells to make anti-oxidants. It can penetrate lightweight clothing and sunblock.
6. If your medical condition permits take omega 3 fatty acids and low dose aspirin (get off any other NSAIDS). Look after your diet and limit processed carbohydrates such as cakes, soft drinks, bread etc. You may want to consider intermittent fasting to get the benefit of ketone bodies and reduced inflammation.
7. Try to get good sleep. If your medical condition permits take melatonin if needed.
8. Limit exercise. Unfortunately, you found out the hard way that this is essential.
9. More surgery is an unknown risk for everybody, and there is always the risk of more fibrosis including nerve fibrosis and neuropathy, which is where you may already be at.
10. Consider using a CPM to gain ROM safely. See more on this on the website in the text above.

All the best,
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 CaliCoast

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Re: Immobile fat pad and unable to walk. What do I do next?
« Reply #2 on: February 04, 2022, 06:07:37 PM »
Thank you, Kay! Very helpful, and agree that it's hard to pull my three causes apart. So in other words -- can the body reduce scarring and fibrosity over time if the patient can remove inflammation (medication and diet) and impingement (crutches for x months)? The site you supplied me (very helpful!) seemed to say that this is indeed possible, but varies greatly upon the individual, timing, and effort? (And yes, no guarantees for sure.)

Also, have you ever heard of anyone using ultrasound (or other methods) to assess the severity of impingement and immobility of the fat pad? Using ultrasound on the right (full ROM) and left knee (no extension) to compare? I've gotten an MRI and it showed scar tissue in the fat pad, but the static cross-sections don't allow understanding of fluid mechanics and how far away it is from clearing any impingement.

I'm curious about this since the severity of symptoms and my ROM fluctuate rapidly within a day. Randomly, I'll have hours in the afternoon where I can reach close to 5% extension, and then later that night it will "tighten" and I can only do 20%. Have you heard of this happening among others?

Offline DogfacedGirl

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Re: Immobile fat pad and unable to walk. What do I do next?
« Reply #3 on: February 05, 2022, 12:46:56 PM »
Hi CaliCoast,

Thanks for the feedback, I'm glad the website was helpful. Yes, the body will break down scar tissue over time in the absence of inflammation, and it seems that it can sometimes do this even for cross-linked collagen. However, as you know, removing inflammation is extremely difficult and some people have an innate tendency towards chronic low-grade inflammation.

And yes, using elbow crutches (not under-arm) for around 6 weeks should give your Hoffas fat pad a rest from constant aggravation and a chance to resolve. You'll lose muscle in that leg, but can re-build afterwards, and you can exercise other parts of the body.

Yes, ultrasound can be used to image the deep parts of the Hoffas in the right hands, but due to the bones, they can't perform cross-section imaging so seeing the impingement is tricky and perhaps won't show. It's performed through the front of the Hoffas and will show the scar tissue.

It's normal to wake up in the morning feeling stiff, as the body contracts overnight. This is when CPM will help to relax the tissues and stretch them before micro-tears and strains occur. For example, if you suffer from plantar fasciitis, which is scarring of the plantar fascia in the feet, gently stretching the soles of the feet before any weight bearing will frequently keep the symptoms under control.

Over the course of the day activities stretch tissues out so you may experience more ROM. By the evening you may be getting more inflammation due to being on your feet or exercise, and this will cause tissue contraction and reduce ROM.

Feel free to ask more questions, and it will be helpful to hear how you go.

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 CaliCoast

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Re: Immobile fat pad and unable to walk. What do I do next?
« Reply #4 on: February 23, 2022, 10:18:50 PM »
Hi Kay, I had a couple of follow-up questions.

I recently talked with a Physical Therapy clinic (Shelbourne Knee Center) that has seen many arthrofibrosis cases. They instructed that stretching your knee into extension, with a tool like "Ideal Knee Stretch", is key to rebuilding extension. It seems sensible but I've found that my knee becomes more aggravated the following day after I do passive extension stretching. (E.G. I'm using a CPM machine set to the edge of my discomfort, or I'll sit on the ground and slowly let gravity full extend my knee through slight discomfort.) The next day, my ROM slightly decreases as my knee feels more sticky and "full", so this advice at least feels a bit counter to my personal experience. I know many experts advise against full extension when you suffer from a swollen fat pad -- since it can exacerbate it -- so figured that may be at play here beyond AF?

Should I keep a daily practice of putting my knee into zero degrees extension to regain extension? Do I just need to increase the frequency of this practice for my knee to adapt? Or is the opposite true, and need to avoid full extension at all costs so I don't create further trauma/swelling?

PS: You mentioned elbow crutches in your last reply. Wouldn't underarm crutches work just as well or am I missing something?


Offline DogfacedGirl

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Re: Immobile fat pad and unable to walk. What do I do next?
« Reply #5 on: February 24, 2022, 02:45:55 AM »
Hi CaliCoast,

I think that the Hoffa's fat pad is the most under-appreciated organ in it's role in the health and disease of the knee. Yours is clearly a very unhappy and scarred fat pad, and the literature suggests that fibrosis of the fat pad can drive AF on its own. You can get fibrosis in any of the soft tissue structures of the knee, and arthrofibrosis can result from many of these, but an unhappy Hoffas seems to be a key part of the picture.

Therefore, keeping the fat pad as happy as possible is probably the best approach, but this has not been tested scientifically. Stretching exercises are indeed key to maintaining and regaining ROM, however, I believe that stretching should always be done in the pain-free zone. If the degree of stretch causes problems afterwards this indicates, as you suggest, that the Hoffas is being pinched and it's getting more inflamed (and/or another structure is getting inflamed) as a consequence. This is not helpful for overcoming AF.

I don't think that buying another stretching tool is the answer, and even although you're being careful I feel that you should probably stop the stretches at a lesser amount of extension - that is, not push it to get to zero. You'll need to see what degree of extension is safe for you, and only increase that when it's safe to do so. One advantage of the CPM is the precise read-out of the degrees of stretch, so you can set it within your safe zone. Be patient, and do the stretches at least twice a day. It will take time, most likely months, but the Hoffas may settle down and allow more extension.

Regarding the crutches, the under-arm type can cause nerve damage since your body weight is hanging from a delicate area not designed for this. The elbow type are safe, and allow more dexterity, but remember to always put them aside before you sit down or stand up, or they can slip out and damage you.

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 CaliCoast

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Re: Immobile fat pad and unable to walk. What do I do next?
« Reply #6 on: February 24, 2022, 04:36:55 AM »
Thanks, Kay. Your advice matches my experience with this issue, so will try and be more patient and give my knee more time to mend. Will keep you posted.

Offline amy

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Re: Immobile fat pad and unable to walk. What do I do next?
« Reply #7 on: March 30, 2022, 05:14:55 PM »
Hi Calicoast ands Kay

I just wondered how you are getting on Calicoast with you fat pad problem and AF and if resting and using crutches is working?
I have been suffering with a fat pad problem for 15months, kicked off by surgery for a small lateral meniscal tear last Jan. I was recovering but no where back to normal and then stupidly crouched down in the shower and really did aggravated the fat pad. I was given a steroid injection into it 12days later that made it a lot worse and have pretty much been immobile since. I has a few weeks of improvement in Aug last year through doing hydrotherapy and then a change in exercises from my Physio put me back to square one. I've been unable to stand for even a few seconds comfortably since Aug last year and use crutches to get around the house for essentials like to the loo! Im also 32 weeks pregnant so can't get another MRI yet (last one in July last year showed oedema in the Apex of the fat pad)
I also get a constant burning pain on the outside of the knee now that started in Oct 6 months ago- it can just com eon a rest and often comes on very intensely when i get into bed. Its constant and sometimes lasts days. I'm wondering if its an irritated nerve as its not like any other pain i've ever experienced.
Life is a struggle, ive lost huge amounts of muscle now from being immobile for the past 15months. My Envelope of function and tolerability seems to be regressing despite me being more and more careful. At the beginning of Jan I was taking myself to a pool a few times a week to walk up and down- that was my only walking for the day, and a few mins on a static reclining bike. I'm  not able to tolerate any of that apart from my hydrotherapy session one a week in deeper warmer water so not really weight bearing.

I can totally sympathise with your situation - being in constant pain and disabled is not fun. I'm so lucky my partner looks after me and cooks/cleans/walks the dogs. I was a professional horse rider and still have   a yard at  home but have had to sell most of my horses as I cant even walk the 100 steps out to the yard let alone ride. Its soul destroying. Really hope you have some good news and you are improving a little?

Sorry for the long post. I welcome anyone's help and knowledge!

Offline DogfacedGirl

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Re: Immobile fat pad and unable to walk. What do I do next?
« Reply #8 on: April 01, 2022, 02:18:22 PM »
Hi Amy,

You may have some nerve fibrosis happening, this can occur inside the fat pad and the inflammation could cause nerve fibrosis further along the nerve outside the fat pad. It's very painful. The fat pad is packed with nerves, and all soft tissues can becomes fibrotic.

I don't know if this will work but you could try putting 5 % lidocaine (also called lignocaine eg Xylocaine) cream on the area that burns on the outside of your knee and also on the fat pad area. Lidocaine is an anaesthetic that dentists and surgeons use to make an area numb and it's very effective. Make sure you wash any fingers that get it on or your fingertip will go numb. Check with the pharmacist or your doctor to make sure it's OK to use it when pregnant.

Try to avoid the patella tendon, go either side of it just under the knee cap - you can probably feel the Hoffas if you push there. However, the nerves in the fat pad are possibly too deep inside the knee for the cream to work well there, and you may have more success with the other area. The cream may need to be replaced when it wears off after several hours. There are also lidocaine patches that you can buy and these stay on for a day, but I've heard that they're expensive.

It's possible to have anaesthetic injected into the fat pad and on the side of the knee, but this doesn't last more than a day. You may want to see a pain specialist to see if they can help with pain medications, but be careful of invasive procedures since they can cause more harm than good, as you've unfortunately found out.

If the lidocaine works it will help to reduce inflammation in the fat pad because upset nerves cause inflammation.

All the best,

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 amy

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Re: Immobile fat pad and unable to walk. What do I do next?
« Reply #9 on: April 01, 2022, 02:42:34 PM »
Hi Kay

Thanks for getting back to me :-) Everyone on here seems to be so supportive of each other.

I was using the 5% lidocaine patches last year (prescribed by a pain specialist) before I fell pregnant and they definitely helped, but unfortunately they cross the placenta so I had to stop! I've not tried the cream and hadn't heard of it so thank you- it may also cross the placenta but worth finding out and good to know for when the baby has arrived. Its interesting you saying about the lidocaine helping to reduce the inflammation as well so that's a real plus if they work, which they did last year and I did see some improvements in August so maybe it was the patches helping to reduce the inflam by interrupting the nerve signal.

I had heard of fibrosis on the fat pad but not nerve fibrosis that spread radiating from the fat pad but it totally makes sense now you've said it. Do you know if this is reversible?

I did have a fat pad injection given my my OS back in April last year along with steroid (depomedrone) and it made the knee pain go away for the afternoon (at that point i didn't have any of the constant nerve pain on the outside of knee) But it then subsequently flared by knee up a lot worse over the following week since the anaesthetic worse off :-(

I have also been told I could have a Genicular nerve block/ablation if pain doesn't improve- which in turn should allow me to do some physio. I've been doing hydrotherapy since May last year but the short term improvement I had in August last year seems impossible to get to again- but the movement in the water in at least keeping my back and hips moving a bit as I sit all day pretty much apart from hobbling on crutches to the loo and up to bed...

Also been advised to try Gabapentin after the baby is born, do you know much about this drug and if it can get rid of the nerve pain for good or at least improve it ?! I'm very very weary about having a fat pad trim or any further surgery...

Sorry for so many questions, iv'e been lurking on this forum for a while and finally plucked up the courage to post that post the other day!

Thanks again
Amy

Offline DogfacedGirl

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Re: Immobile fat pad and unable to walk. What do I do next?
« Reply #10 on: April 03, 2022, 09:21:25 AM »
Hi Amy,

Yes, I've always found KneeGuru to be a supportive community.

Ah, that's a shame you can't use the lidocaine patches at the moment, and I'm guessing the cream will be the same story.

Nerve fibrosis is sometimes reversible if it's successfully treated early on. The problem is that the different forms of fibrosis aren't labelled as "fibrosis" in the same way that different forms of cancer are labelled - for example, "breast cancer". Because of this there is less understanding of the pathology of fibrosis and less sharing of therapies between the specialities. And many clinicians may not even be aware that fibrosis is the root issue in nerves.

The anaesthetic injection in your Hoffas did at least demonstrate that your pain originates from the nerves there, so it was some use. My guess is that the steroid caused the increased pain afterwards.

I think a fat pad trim would be extremely unwise in your situation. Gabapentin was one of the pain meds I was thinking of, it's probably the main "go-to" med used for neuralgia. It downregulates the release of Substance P (P for pain) which not only reduces pain but also reduces inflammation. It's certainly worth a try after you've had your baby.

I'm glad that you plucked up the courage to post, everybody learns from reading posts from other people  :) Feel free to a ask more questions.

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 DogfacedGirl

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Re: Immobile fat pad and unable to walk. What do I do next?
« Reply #11 on: April 03, 2022, 09:27:46 AM »
I forgot to mention magnesium supplements, check with your doctor that it's OK for you to take first in case it interferes with a med you're taking. Magnesium is essential for many body processes and low magnesium causes inflammation and fibrosis and is common in cases of chronic inflammation.

Check what form it is in and avoid magnesium oxide, this form is poorly absorbed by the body and as a result can cause diarrhoea. Magnesium citrate is one form that is absorbed fairly well, however, the oxide form is cheaper to make and more commonly sold.

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 amy

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Re: Immobile fat pad and unable to walk. What do I do next?
« Reply #12 on: April 03, 2022, 02:54:18 PM »
Thank you- I will get some magnesium ordered!

What would be the best way to get a diagnosis of the nerve fibrosis or any other fat pad fibrosis? Do I go back to my GP and push for MRI/MRN /bone scan/ US/ XRAY? The MRI last year in July showed oedema in the apex of the fat pad and local friction to the patella tendon. But the pain has become more constant since and the knee less and less tolerable/constant pain at rest. I had an EMG test and nerve conduction study done last June that gave all normal results- but the nerve pain wasn't as bad then and my muscles weren't yet as atrophied as they are now, as had only been immobile for a few months.

Do you know how quickly fibrosis starts to happen? It's been 15months since my meniscectomy, 12 months since I then really worsened things by crouching down in the shower, and a good 6-7 months since I started to get this burning constant 'nerve' pain as I call it on the outside of the knee. Although its all very 'nervy' type pain from the fat pad!  I'm wondering if I should consider being induced so I can get the pain management things under control sooner as I'm really struggling to get through the days and nights...

I know a few have had some success with deep friction massage into the fat pad- do you have any experience with this? Generally any pressing on the fat pad flares it up but occasionally I have massaged it a bit deeper in a warm bath and haven't flared it up too much.

Will definitely being trying the Gabapentin and lidocaine patches as soon as safe to do so. Are there any other known treatments for reversing this nerve pain/ fibrosis? Laser/Cryotherapy? 

I would be happy with just small progress to be able to walk in house without crutches and do the recumbent  bike again for 10 mins a day to build strength, but my new Physio has said to avoid bike as too repetitive whilst the fat pad is still so painful. He has given me some non weightbearing quad exercises to do that stay out of full extension. Any standing even for 30 seconds aggravates it!

It feels almost impossible to rebuild muscle as the knee is so painful. I am frightened i'm going to be stuck like this forever and never recover or worse case get even worse. Its as much a mental challenge as a physical one and I do struggle to cope with the disability. I'm lucky my partner does everything in the house, I would be stuck if I was on my own so am eternally grateful for that.

Thank you again, and sorry for so many questions. Its nice to finally be chatting to someone who understands where im coming from. What position are you in with your knee/s at the moment?

Amy :-)



Offline DogfacedGirl

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Re: Immobile fat pad and unable to walk. What do I do next?
« Reply #13 on: April 04, 2022, 02:23:40 PM »
Hi Amy,

You could have another MRI to get a diagnosis for the fat pad and patellar tendon fibrosis (make sure this is specifically requested on the referral), the problem then is, how to treat it. In my opinion the effects of the anaesthetic into the fat pad is diagnostic of fibrosis there and for the nerves on the outside of the knee.

Fibrosis can happen very quickly with a severe insult such as surgery or injury, or more gradually with a low grade chronic insult, as often happens with frozen shoulder. You're likely correct that crouching in the shower scissored the Hoffas between the bones of the knee and damaged it, creating more inflammation and fibrosis, especially as these were already present to some degree.

Regarding deep massage, my "rule of thumb" is that if the knee feels worse in the aftermath, then whatever it was that you did (massage, exercise, etc) was too much, and you need to back off. It's possible to cause bruising (bleeding) if the massage is too vigorous or if your tissues are especially delicate, and bleeding is very detrimental in the setting of fibrosis. It is true that massage can help to remove cell debris and increase blood flow, and people can be helped by this, but be very careful with it and if there is pain then back off.

I don't know if you have restricted ROM, but in any case, you need to keep that leg moving as much as possible to maintain blood flow and keep the tissues functional, but in a way that is not painful. This can be achieved with careful CPM performed several times a day in the pain-free zone. I can refer you to a website that explains how to go about this if you're interested, you may have come across it already.

I don't think lasers are the answer because they create damage (burns), same with many forms of cryotherapy. There are no available therapies that specifically target fibrosis unfortunately, although there are some in trials. The best that can be done is to target inflammation, but even here it's difficult. If you're taking NSAIDS long term this is actually detrimental.

You've likely seen my earlier posts about low dose aspirin and high dose omega 3 fatty acids. These induce the production of resolvins, compounds that the body makes to help resolve inflammation. With all of these things I suggest, check with your doctor before taking them.

I also suggest a blood test for essential minerals and vitamins, particularly Vit D, iron, potassium, and a urine test for iodine. I expect you may have already had this done, they are essential for proper functioning of the body. Iodine is often not tested but is frequently low in people on a Western diet, and it's essential for immune function.

These suggestions are not a cure, but everything helps. Other things include a diet low in sugar and processed carbohydrates and high in fibre because gut bugs have a major impact on inflammation. Lots of plant based food provides fibre and the anti-inflammatory benefits of a range of plant compounds, the more colourful you plate is the healthier it is. Probiotics also help.

There is a product that has been developed from the compounds found in cabbages and broccoli that is strongly anti-inflammatory. The best of these products that is available has been used in many scientific studies on cancer etc and extensively independently tested, so we know it contains what it claims to, and doesn't have added nasties. This is called Avmacol. However, it is a powerful compound and it can affect how other medications are metabolised, so again, check with your doctor, especially while pregnant.

Regarding the bike, in my opinion repetitive is not the problem, pedalling can help maintain ROM and blood flow. However, pain afterwards certainly is a problem. If you're able to pedal without any resistance for even 5 minutes twice a day, this would help to keep the leg mobile as well as maintain some muscle, but as always, if it hurts afterwards then back off. That also applies to non weightbearing quad exercises!

Full extension while standing and exercising will pinch the puffy inflamed fat pad, that is why it hurts so much.

I do understand, and I'm sorry that you're having to consider being induced.

Thanks for asking about my knee, I'm doing OK  :)

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 amy

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Re: Immobile fat pad and unable to walk. What do I do next?
« Reply #14 on: April 05, 2022, 09:58:54 AM »
Hi Kay

Thanks again for all the useful advice. Magnesium should be arriving today...

My ROM is not too bad I don't think- I can put the leg into full extension when sat up in bed but its uncomfortable and if I do it for too long it flares my pain up worse. I can bend the knee reasonably far back when doing heel slides, its not very comfortable the more bend it gets and again if I do it too many times it flares the pain a lot worse. I don't have to 'click' it into full extension or anything- i just feels like the hoffas is being squeezed more in it and same for the more flexed position. It doesn't even really like me laying down with my knees bent a bit on the bed. I also try and get in a pool twice a week for gentle walking and to move my hips and back- once with a hydro person and once on my own with my mum to help me. I use the crutches until I get pool side. Happy to look into the CPM machine if it can help but also happy to try reclining bike again for 5mins am and pm or just once am on days I get in the water. I very gently roll my foot on a soft football when sat in a chair for 2 sets of 2 most days but not every day depending on how extreme pain is but avoid complete extension and flexion.

The problem really is that there is pain  in the knee all of the time, just sometimes its more bearable and sometimes so intense,  burning and like electricity thronging in my lateral knee and a bit down my leg- constant once it kicks off sometimes even for days. I have quite  bit of noisy crepitus I can hear and feel in the bad knee under the knee cap, assuming this is the inflammation in the fat pad, esp noticeable when squeezing quads. But the constant full on irritation makes me wonder if there is a bit of a compressed /irritated nerve somewhere as well as the fat pad issue? Or if this truly is just radiating nerve pain from the unhappy lateral hoffas  to the peroneal nerve on the outside... any thoughts on this? I cant lie on it anymore in bed- I try to but within a minute it sends the pain rocketing so I turn over again. It never used to be quite this intense and irritable a few months ago :-(

I have heard about  low dose of aspirin helping inflammation but not sure what dose to take? I also might need to wait until after the baby is born unless its only a really low dose. The tablets I have are 300mg but can easily be split in half. I've also been taking Omega 3 1000mg daily since I fell pregnant since around Sept as also good for baby's development and we eat fish a few times week. Also take a probiotic daily as well. Will make an effort to cut out more sugar from now on... The Avmacol supplement looks interesting but will check with GP.

Haven't had any of those blood tests done so this is something I could do- I'm guessing I will have to go privately for this if I cant persuade my GP to do them!!

The other thing I am yet to explore are a PRP injection/s, not sure if these go into fat pad or joint. I know its less damaging than a steroid, but wondering if needle itself would upset fat pad/knee even more. I'm starting to wonder if the injection into the side of my knee joint in Oct started to kick off this extreme constant nerve pain I get on the outside of knee.. maybe it caught a nerve and its since got more and more inflamed?

Finally wondered if you know of anyone who has had success with breaking down inflammation with shockwave therapy or daily gentle ultra sound? One suggestion my OS gave me was to go straight to having a genicular nerve block- but again weary as its another 'procedure.' So maybe I should try the lidocaine patches and then gabapentin first for a few months as soon as safe to do so.

Glad your knee is doing well. I was considering starting a new thread and posting about my situation- one thing I am keen to do is find an OS that has experience with fat pad issues. Do you know any that have a particularly good reputation?
 I have seen Claire Robertson PFS physio at Wimbledon clinics last year once in May and have stayed in touch with her via zoom sessions but as I cant really do any physio she has said I need pain management once the baby is here. 


Amy :-)









Offline DogfacedGirl

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Re: Immobile fat pad and unable to walk. What do I do next?
« Reply #15 on: April 05, 2022, 02:28:55 PM »
Hi Amy,

I think it's very likely that you have both an inflamed and fibrotic fat pad, including the nerves it contains, and an inflamed nerve/s outside the joint.

I happened to be chatting to a pain specialist today and ran your symptoms past him. He suggested that nerve ablation is the usual method used, using radiofrequency ablation, although cryotherapy is also possible but not in any way better, and requires a much larger needle that is inserted.

From what he told me there are a few problems with ablation: one being that the nerve can re-grow, along with the pain, and also that it's difficult to locate the nerve to ablate it. There is also a small risk of more inflammation occurring in that nerve, but apparently this is more likely if the nerve is cut. I understand a nerve block is done before ablation. A nerve block (anaesthetised nerve) on it's own will only last a few hours.

We discussed the usual medications for neuralgia, and he mentioned that there is a nerve stimulation treatment. From what I gathered they place a needle next to the nerve and stimulate it to de-sensitise it. It might be worth seeing a pain specialist to discuss this. However, the mechanical pain from the Hoffas being pinched will still be there, unfortunately. The only way that this will go is for the fat pad to settle right down and for the fibrosis to resolve, but being where it is, this is very difficult - as you know.

You could also ask about Vagus nerve stimulation. Several variations of this are being trialled for other pain pathologies, some involve implanting a device at the base of the neck. I don't know if it would be suitable, but it's worth asking about.

Regarding aspirin, low dose is 80 to 100 mg/day, and it can be bought in a capsule that is easier on the stomach. And yes, ask your doctor.

I would think that being pregnant on it's own would be a reason for your GP to order tests for essential vitamins and minerals. Good luck with it.

I personally feel that it's not worth wasting your time and money on either PRP injections or Hyaluronic Acid injections. There is no sound science supporting these methods and they are a huge money maker. There is also an infection risk (has your knee been tested for infection?) and sometimes PRP is prepared in the back room without proper sterile technique and equipment. On top of that, the "growth factors" that are supposedly concentrated from your blood and re-injected in PRP treatments are the very factors that are causing your fibrosis, and you don't need more of them. It would be a different matter if you had a broken bone that wouldn't heal.

I have heard stories about shockwave therapy making the situation worse, but I'm not an expert on this. However, I can see that it may upset the nerves more.

I don't know any surgeons or physios in the UK, but I know there is the Newcastle Fibrosis Research Group. I don't know this group personally.

All the best,
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 amy

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Re: Immobile fat pad and unable to walk. What do I do next?
« Reply #16 on: April 05, 2022, 03:02:01 PM »
Hi Kay

All super helpful advice again. thank you for talking about my case with a pain specialist today- very kind of you. Everyone really is supportive on this forum, wish I had joined in sooner!

Yes I wasn't 100%sure about PRP either and just generally having another needle stuck in my knee for something that isn't proven to work. Shockwave does seem to be pretty aggressive so I think I will steer clear and I really don't want to upset the fat pad nerves anymore.

The nerve ablation seems worth considering and seriously looking into.... as does finding out more about the nerve stimulation treatment with the needle and Vagus nerve stimulation. Thank you

Am I right in thinking to get rid of the mechanical pinch in the fat pad I need to reduce inflammation and pain signals and in turn that may allow the fibrosis to go away? I was going to try Diclofenac for a few months once safe to, I was on 1500mg of Naproxen for around 3 month last year but this didn't help I don't think. I try to tape the patella off the fat pad but this is a bit hit and mis to how well it works and 90% of the time pain is there. I think the slight maltracking is due to loss of muscle as I never ever had any problems like that before when I was strong- so this adds to the vicious cycle of pinching as well.

Is my best line of attack, in your opinion, to try and settle the pain with the meds/patches and possibly nerve ablation.. so I can do some physio to strengthen the knee so stop the pinching/allow the fibrosis to heal possibly? Or am I too far down the line for a full recovery maybe now...

Amy :-)




Offline DogfacedGirl

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Re: Immobile fat pad and unable to walk. What do I do next?
« Reply #17 on: April 06, 2022, 02:28:27 PM »
Hi Amy,

Yes, reducing inflammation and pain signals is a necessary first step in resolving fibrosis. However, after a certain time these factors "feed" each other and it becomes extremely difficult to break the cycle.

Unfortunately, most quad exercises upset an inflamed fat pad and patellar tendon more, and this is a major cause of problems. In my opinion, quad exercises other than very gentle ones should be left until the pain has gone, and even then you will need to be very careful for a considerable time. I don't know if you are too far along for full resolution, but in any case minimising the symptoms is obviously desirable.

Diclofenac and Naproxen are both NSAIDS, and in the longer term (most likely longer than a week) the evidence suggests that NSAIDS other than aspirin increase fibrosis. This is why there are warnings about the risk of heart and kidney disease on these products - these diseases should be called heart fibrosis and kidney fibrosis. The cause of this is that the gene that the NSAIDS inhibit is necessary for producing the molecules that reduce inflammation, called resolvins (and others). However, aspirin increases the amount of resolvins the body makes, which is why people with heart disease are frequently prescribed low dose aspirin and fish oil, which provides the building blocks of resolvins.

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 amy

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Re: Immobile fat pad and unable to walk. What do I do next?
« Reply #18 on: April 07, 2022, 01:00:11 PM »
Hi Kay

Thank you. It sounds like the low dose of Aspirin and the Magnesium is the best way forwards to hopefully help with the inflammation. I have been able to do the recumbent bike with no resistance for 5 mins the past two days. Its not much but better than nothing.  I will also continue the hydrotherapy twice a week for movement.

My maternity consultant actually assured me it was safe to use the 5% lidocain patches a few days ago, although they cross the placenta they are deemed to not be harmful to the baby. I put one over where the radiating extreme constant nerve pain was on the outside of me knee yesterday morning as I couldn't cope with the drilling throbbing pain (it had kept me awake all night and I was beside myself) I was so disappointed as they didn't work at all. Last year when I used them they were really good at numbing the pain... I kept them on for the full 12hrs but didn't get any relief at all. I will try again tonight..

I suppose people in my position who have been unable to really do proper physio (other than the hyrdo) consider the fat pad trim eventually as they see no other option. I know my situation is pretty sever as I cant walk or stand and have been this was for a good year . I wasn't as bad as I am now following the Meniscectomy, the crouching in the shower really put the nail in the coffin. I know most people on here advise against a fat pad trim as it can make things worse and more painful- Is there a time limit you would put on eventually trying a fat pad trim? For example- Should I give it another 6-8 months trying to reduce pain and infalm and very gradually could some leg strength? Its so hard being this immobile, in pain and unable to do anything around the house to help my partner...

I feel completely stuck in a rut.... I cant live like this forever... My GP said the other day- worse case scenario I could have a TKR!!!

Thanks

Amy



Offline DogfacedGirl

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Re: Immobile fat pad and unable to walk. What do I do next?
« Reply #19 on: April 08, 2022, 09:36:53 AM »
Hi Amy,
I hope the lidocaine patch works the next time!

It's good that you can at least do some peddling, even if it doesn't feel like much, it's helpful.

Personally, I would investigate every other avenue before turning to more surgery, for example, the nerve ablation and vagus nerve stimulation. Also you could have tests for autoimmune disease, if this hasn't been done, including ANA (antinuclear antibody) test and MBL deficiency.

A TKR is not going to solve your Hoffas fat pad problems - it was what badly inflamed and scared my fat pad in the first place, and the surgery is well known as a cause of arthrofibrosis. It's very major surgery and is only indicated if your cartilage, or actually lack of it, is causing major issues.

If this is not the case then it is very ill advised to go down that rabbit hole. What often happens then, in the presence of ongoing issues which you will almost certainly have, is a revision TKR, and the loss of more bone etc, even if the original TKR was performed perfectly and there is nothing wrong with it. It simply doesn't make any sense when you know what the underlying pathology is. It sets up a cycle of more surgery and problems.

Take care,
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 amy

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Re: Immobile fat pad and unable to walk. What do I do next?
« Reply #20 on: April 08, 2022, 10:46:20 AM »
Hi Kay

Thank you for your honesty. The GP said they would take the fat pad out but when  I've looked into this is doesn't seem like it's the best way to do a TKR anyway. I think this is a very extreme suggestion and that the GP doesn't understand Fat pad issue. He openly admitted I'm the only person he's ever come across with a fat pad problem.

With the nerve ablation approach I get confused, I understand that if it works it should stop the pain, but wouldnt I still pinch the enlarged fat pad them by walking on it and doing all the physio exercises? Or does the nerve ablation itself reduce inflammation and fibrosis enough that it no longer gets pinched with weight bearing /physio?

I know in a previous post you said your knee was doing okay now.. does that mean you have managed to get the Arthrofibrosis under control now enough that you can functional normally for daily activities? What did you find worked well? ....dare I even ask how long it's taken? I suppose I'm worried as my symptoms are getting worse not better so sometimes I panic I'm going to be stuck like this forever. Are others you've come across in constant pain even at rest and when they wake up before theyve walked on their knee?! Some I read about on here are able to walk but are not able to run or do sports, mine situation seems very extreme compared to others...

In your opinion the fact that I still have okay ROM albeit it painful is a good thing surely? But it is uncomfortable and flares pain/inflammation letting the leg sit in full extension or sliding it back into full flexion. I can not hold my heel behind me like I used to pre injury to do a quad stretch.. if I did this I think it would truly bugger the knee up.
Am I doing the right thing by letting the leg go into full flexion and flexing toes to stretch back of leg and making it go into flexion every day to keep the ROM, despite it being painful?

I will definitely try and nerve ablation and Gabapentin etc and not rush into surgery, I also would like to get full bloods done and a new MRI/possibly a bone scan done aswell. The only problem is I can get these done until after the baby, and my GP is suggesting I could get the nerve ablation done before the baby is born... wouldnt it make more sense to see the new MRI first?

I keep meaning to ask, what part of the world are you in?

Amy :-)

Offline amy

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Re: Immobile fat pad and unable to walk. What do I do next?
« Reply #21 on: April 08, 2022, 11:13:24 AM »
One other quick question... have you used a CPM machine before and do you think this could be a good idea for a few months? I do leg slides but I'm using my muscles to do those... I've ready that some people use it for quite a few hours of the day to keep the joint moving? Does the leg going into full extention/full flexion over and over again not inflame the fat pad more ?  :-)

Offline DogfacedGirl

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Re: Immobile fat pad and unable to walk. What do I do next?
« Reply #22 on: April 09, 2022, 03:08:49 AM »
Hi Amy,

Yes, I think it's likely that the fat pad would still cause problems after a nerve ablation due to the mechanical issue there. And yes, removing the fat pad is detrimental to the patella tendon and other structures, it's very important to the knee, unfortunately.

Being in constant pain could mean that the stretching and other things that you're doing is upsetting the knee and it's not getting a chance to resolve the inflammation. You describe "letting the leg go into full flexion and flexing toes to stretch back of leg and making it go into flexion every day to keep the ROM, despite it being painful". While I understand the desire to maintain ROM, by doing these stretches you're pinching the fat pad and upsetting it more, and it will continue to get worse while you're doing the stretches or anything else that pinches the fat pad.

You can achieve good results with a CPM without pain. A CPM will stretch the tissues by the same amount (depending on your settings), but because it's passive motion instead of active (using your muscles) there isn't the pressure between the bones that pinches the fat pad. Have a read of this page https://arthrofibrosis.info/key-points/ under "Go Deeper" it describes how to use a CPM. A computer controlled one is a must.

It's not unusual for somebody with fat pad problems to be in constant pain. It's a sign that they have overdone something, which may be a simple as standing and chatting for too long. The only way to avoid this is by using crutches (use the elbow ones) or staying off your feet, as you've been doing so that you have fine control of the amount of bend and extension.

If you're diagnosed with an autoimmune disease then you'll have access to things like Simponi. This is is an antibody that blocks TNF-a, one of the key cytokines the body makes to create inflammation. If you have elevated TNF-a then this can really help to reduce pain, and help you to sleep.

I still use a CPM twice a day to maintain my ROM in a region that is just functional. If miss CPM for a day it takes time to get the ROM back, and it's more uncomfortable. As mentioned, you need to use a CPM in the pain free zone, but some discomfit is OK. Think of the discomfit of stretching a finger backwards until it stops. That's OK, but if you push past that point it becomes pain because tissues are tearing. And you don't want that!! There is research that suggests that CPM also helps to reduce inflammation.

I still need to carefully monitor and control how long I spend on my feet, and I don't use that leg for getting into and out of a chair or for steps because my fat pad still pinches. So my situation isn't ideal, but I can still be active to some degree. In addition to CPM I do restricted time eating - I only eat for 8 hours in a day, and fast for the other hours, and I occasionally do some multi-day fasts with only water, but this definitely isn't recommended for somebody who is pregnant!

I live in Australia. I spend as much time outdoors as I can because the infrared radiation from the sun is powerfully anti-inflammatory, and in addition Vit D is essential for the immune system, but I'm careful not to get sunburnt. Infrared radiation penetrates cloths, hats and sunblock, but not heavily insulated jackets. It also penetrates the skin and placenta is very beneficial to a developing foetus, including brain development. I find that I can be more active in summer than in winter, and it seems to me that the increased levels of infrared radiation in summer are an important part of that. It might even be worth buying an infrared radiation light for winter, but I haven't looked into which ones actually have the output (wavelengths) that they're advertised to have. Infrared radiation is invisible, so you can't tell by looking.

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 amy

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Re: Immobile fat pad and unable to walk. What do I do next?
« Reply #23 on: April 09, 2022, 05:39:36 PM »
Hi Kay

The sunshine sounds lovely. My Auntie and Uncle live in Austrailia, they've been there for over 30yrs now, in Perth.

I will perhaps try and few weeks avoiding the extremes of extention and flexion sgain and see if that helps reduce the pain, although I did only start doing these about 5/6 weeks ago, on advice from a PT.  Because I had not let my leg go into full extention since when I hurt it in the shower end of last March, and she was worried that if I didnt donit a bit the leg might not be able to donit fully if I left it too long.

I've been on my crutches for about 6 weeks now, maybe longer, I occasionally walk slowly to to loo without them and have been resting and walking less than 150steps a day for over 3 months again... at one point I was walking approx 400/500 steps a day I think, maybe 600 on a good day but oy really is nothing at all. I was also walking a bit in the pool a few times a week then but doing a lot less now. I have lost so much muscle from being so immobile for so long... this worries me the longer it goes on?

I could cry because today I have gone over on my ankle walking to the loo without my crutches, we have a small
step in the house and I went over on it good and proper on my bad leg. Now stuck on sofa icing it and unable to move. I'm assuming that because I've not walked properly or been comfortable enough the weight bare properly for the past 15months my ankle and hip has also become weak along with the weak knee that's slightly wobbly now due to lack of proper use and muscle.. I'm extra gutted as I'm now unable to go to the pool tomorrow or Tuesday(or possibly Thurs either) and that's one thing that at least allows me to do some gentle walking and hip movements in the pool and helps my back. Maybe I only need a week off the pool, god knows, but the ankle is throbbing !

I understand I need to get the inflammation and pain down, but how do I get my leg strong again when it's still painful to stand and walk normally , I sit to brush my teeth then just the standing for 20secs to rinse my mouth I'm mostly stood on good leg as it just doesnt like me standing on it and even then I'm keeping a soft knee and cant lock it straight (I could physically do this but it would cause pain and aggravate it)

Is there a difference between an impingement and inflammation in the fat pad? My MRI showed Oedema in apex of fat pad (I thought this was under my knee cap at the top when looking at the fat pad side on.. but now I'm not sure if the apex is lower down towards the back where the shin and thigh bone meet? Do you know?

If it's a mechanical impingement that developed from crouching in shower and causing trauma that has now started to turn into fibrosis, is calming the inflammation down and getting the muscles in the leg and hip strong again the best way and only way forward? It seems nearly impossible to do this, despite the amount of time I've stayed off the knee (and because its painful so I'm governed by that) Is getting the leg strong alone enough to get back to walking and standing pain free and doing normal daily jobs again?

The surgery obviously started a fat pad problem on the lateral side but I was still able to put my leg into full extention without pain. I believe if I had rested further and done more PT and  not crouched in shower I probably would have recovered, albeit slowly and it might have taken a good few months more. Now I'm wondering if the creaking fluid/fibrosis tissue in the knee (that was not there prior to crouching, post op) is ever going to go away with just getting the leg stronger?

I'm glad you are able to live an active life to some extent still, how many steps do you do a day? Are you able to do the food shopping etc/ jobs around the house/ swim etc?
I can't even do my own washing, cooking or cleaning and this worries me as I need to be able to do those basic things and to be a mum. I suppose the nerve ablation and Gabapentin are suppose to ease the pain to create a window of opportunity to strengthen the leg, but after 15 months of not being able to walk normally I'm hoping that the muscle atrophy isnt irreversible? I have gone to the pool and done the bike on and off but mostly on during those 15months...

Amy


Offline amy

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Re: Immobile fat pad and unable to walk. What do I do next?
« Reply #24 on: April 09, 2022, 05:45:59 PM »
Forgot to say I will look into hiring a CPM machine, how long should I use it for.. a month? Two months? Longer..

I also meant to ask.. Is arthrofibrosis more when the soft tissue has become hard which is why is causes ROM problems? Is my knee heading that way? Does arthrofibrosis show up differently on an MRI, I.e they call it arthrofibrosis not oedema for example?

Thanks


Offline DogfacedGirl

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Re: Immobile fat pad and unable to walk. What do I do next?
« Reply #25 on: April 12, 2022, 12:00:29 PM »
Hi Amy,

I'm in Perth too  :)

I'm so sorry about your bad ankle sprain!! I hope the pain has eased off a bit. A CPM would really help you right now, the sooner you can obtain one, the better. I think you would need to allow a number of months using one, and it might be cheaper to buy a second hand one from a hospital. Ebay sells them, but make sure it's digitally controlled.

Arthrofibrosis simply means scar tissue in a joint, which is usually diagnosed by a lack of ROM. Oedema is swelling, and if the whole joint is swollen this can cause a lack of ROM, but the cause is evident in that case. Scar tissue in a joint usually causes a lack of ROM right from the start, but where it forms causes somewhat different symptoms and some people lack ROM only on extension or flexion. Any of the soft tissues in a joint can become fibrotic, and in time the scar tissue becomes strongly cross-linked (hardened) and very difficult for the body to break down.

The Hoffas fat pad will swell, "puff up" and stick out between bones if there is significant inflammation in it, and when it's pinched it can lead to more inflammation, fibrosis and impingement. Oedema is a sign of inflammation but not fibrosis, that is usually commented on separately but is not usually referred to as arthrofibrosis on an MRI report.

I'm not familiar with the term "apex" of the fat pad, but as you say, they likely mean at the top, and swelling there would cause impingement between the patellar and femur when the leg is in full extension. This is likely why it's painful for you to make your leg go straight. It's also common for the fat pad to impinge between the femur and tibia (the major leg bones) as well, or instead. You likely have impingement at both sites, given your symptoms of pain in both flexion and extension. Many MRI reports miss or don't report fibrosis, it's often difficult to see.

In my opinion getting your leg back to full strength can wait until your pain has improved, because, as you say, you can't walk or exercise effectively without making your knee worse. So, I personally would focus on getting your inflammation and pain down first, muscle can always be rebuilt when you're ready, it won't vanish entirely.

As mentioned, it's good to keep the leg moving and if you can do some CPM and gentle exercise like pool walking and stationary bike, then that's great. I don't know how well behaved your horses are, but when your ankle has healed you might be able to mount your horse from a chair or something similar, lengthen the stirrup for your bad leg so you aren't putting any tension through it, and go for a walk. That will help your hips, back and muscles, and also how you feel I hope.

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 amy

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Re: Immobile fat pad and unable to walk. What do I do next?
« Reply #26 on: April 17, 2022, 09:15:42 AM »
Hi Kay

Sorry for the long delay in response. I suddenly started to get severe sharp lower back pain and pain into my right buttock Thursday with certain movements and ended up in A&E on Friday screaming with the pain everytime I try to move or shift my weight in a chair or to stand. I thought maybe severe sciatica but it's not shooting down my leg..?! I have been weight bearing on that leg an awful lot over the past 15months and esp the last few months on the crutches and whenever I have to stabd for a few seconds so could have compressed something in my sacrilliac. Its excruciating  :'(

I had just had a CPM machine delivered and used it once on Thurs am. The physio had also given me an electrical stims that goes on my quads and makes the muscle lift and engage to use dialy for 30mins.  I used it twice and notice it still made the fat pad move the tendon forwards when muscle was fully engaged.

I'm not really unsure of what to do as the lack of movement for over a year being housebound and sofa bound and compensating on my good leg so much has really taken an effect on the rest of my body.. I'm stuck in bed now and wheeled to the toilet and even that it a massive effort and incredibly painful. I'm hoping the pain might improve after the baby a little but I've been sat/stood so wonky for so long now. They are going to do a back MRI today hopeully to see if it's my joint or a disk..

I had to have IV morphine into my arm the first day and I could not believe it but I could still feel the nerve pain in my fat pad!!! I felt high but that pain was still present... it also comes on at rest, even after I've not been wait bearing for a day or so. Have said no to any more morphine because of the baby now anyway.

I can feel the fat pad pad creaking when my hand is over it, its definitely fuller/larger than the other normal knee.. and hasnt really changed in so many months despite all the rest and crutches, but the nerve pain that comes on isnt always mechanical, but is aggravated by mechanical movements and weight bearing.

My partner thinks I should try the Gabapentin and the nerve ablation and surgery if not as he said I cant stay bed bound for the rest if my life. My hips/back and legs have become so weak esp now I've been in a bed for 4 more days.. but I know that a fat pad operation wont guarantee I will 'just be able to walk again' and be pain free. I have an new knee MRI booked for mid June after the baby is here. I keep questioning myself if I had just had the fat pad trim last year I might not be in the state where I've lost so much muscle and have had to compensate so much. But it's the unknown of course and you get to a point where you become desperate.

The physio suggested not too long on the CPM, so I did around 40mins between 15 and 100, my plan is to get back to that whenever I'm out in a few days if my back/buttock pain will allow. Would you say once or twice a day to use it? I have it on hire for 5 weeks..
Unfortunately pool and sitting on horse in walk gently and bike is out of the question now ( I have been getting someone to bring my old quiet horse to mounting block and getting from my scooter straight onto him for 15-20mins very gentle walking 4/5 times a week, most weeks unless too bad since June last year to help keep my back and hips going and for my brain but even with a long stirrup I can feel the knee with that minimal amount of weight bearing an my toe just resting. Although I've not been able to do that for the past few weeks as the knee has been to painful.

My body is falling apart, at 33yo about to become a mum I'm pretty terrified how I'm ever going to get myself right again and be able to walk around normally. The longer this goes on the more muscle I'm losing, the harder it is to recover and the more major problems I keep having. If the june MRI showed a large oedema still /impingment would you still avoid the surgery knowing the nerve pain I have already isnt only mechanical? Weight bearing does make the knee worse and the joint is very very weak now, same as my hips  they clunck when I try to move in bed.

Hope you are well, sorry for the essay!! The ankle seems fine now but then I've not stood on it other than front he wheel chair to get on and off the loo/bed.

Amy


Offline amy

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Re: Immobile fat pad and unable to walk. What do I do next?
« Reply #27 on: April 17, 2022, 04:19:28 PM »
I meant to ask how much you know about the Anakinra injection? Do they give it into the fat pad or joint,wondering if this could reduce my inflammation /size of the fat pad...?

Offline DogfacedGirl

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Re: Immobile fat pad and unable to walk. What do I do next?
« Reply #28 on: April 18, 2022, 02:26:06 PM »
Hi Amy,
My goodness, youíre having a rough time!! Iím very sorry about your lower back pain! All the best for the MRI, I hope that it shows a way forward with treating it. As you know, a bulging disk causing sciatica would be one of the things they will be checking for.
Anakinra is usually injected into the joint, but given your situation you could make a good argument for injection into the fat pad. Being an antagonist of one of the major inflammatory cytokines (IL-1) it should help to settle the inflammation, but some people tell me they are helped by it and others not. You may well need a series of injections. It might also be difficult to find a surgeon who is willing to work with you on this. If it did help you would still need to rest the knee while the scar tissue is causing the fat pad to impinge.
Iím glad that you have a CPM now, itís especially important while youíre not moving under your own steam. Some surgeons prescribe staying on a CPM all day and even overnight immediately post op, and it seems that you canít overdo the time, but you can overdo the amount of bend/straightening if you push too hard, as mentioned before. So, as long as youíre not in pain while youíre using it, and it doesnít flare up as a result of using it, the longer that youíre on it, the better. Increase the amount of bend/straightening when you feel comfortable to do so. Try to do some exercises with your good leg and upper body when your back permits.
Given your back situation and that you still feel the fat pad pain even on morphine, itís perhaps a good time to consult another neurologist or pain specialist. They may be able to help with your back at the same time since there will be inflamed nerves there that may benefit from treatment as well. And personally, I would be asking for another knee MRI now to understand the situation better. Not knowing is not a comfortable place to be.
Iím glad youíve been able to get out on one of your horses, and I really hope that youíll be able to get back to that soon. Sometimes even very severe back pain from a disk (if that is the cause) can mend within a week or two with gentle movement after the first two days, so there is hope  :)
I personally would consult a neurologist and a rheumatologist before starting to think about knee surgery. I like to have all the facts before me, including blood tests, autoimmune tests, an inflammatory cytokine panel test etc, if you can persuade the specialist to do these. I feel that a test for connective tissue autoimmune disease should be done considering your knee, ankle and back have all caused major problems.
Itís good that your ankle seems to be healing!
Some interesting work is coming to light with hyperthermia directly applied to muscle groups leading to similar hypertrophy (muscle building) as exercise for people who canít exercise. Whole body hyperthermia like a spar or hot bath is more effective if done carefully, but itís definitely not something you would do while pregnant. However, the single muscle heat treatment might help.
 Please let me know how things go, you might want to Private Message me.
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 amy

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Re: Immobile fat pad and unable to walk. What do I do next?
« Reply #29 on: April 21, 2022, 01:14:34 PM »
Hi Kay
Thanks for all the info again.
Can I private message if I dont have 20 posts?
I'm still in hospital but did have back and hip MRI yesterday, waiting for report from neurosurgeon at present but should be going while today I hope!
Thanks
Amy

Offline DogfacedGirl

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Re: Immobile fat pad and unable to walk. What do I do next?
« Reply #30 on: April 25, 2022, 05:58:02 AM »
Hi Amy,

I PM'd you a couple of days ago, I hope it came through.

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 vickster

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Re: Immobile fat pad and unable to walk. What do I do next?
« Reply #31 on: April 25, 2022, 08:31:58 AM »
Just a note, you can receive PMs but you canít respond until you have made at least 20 posts (games area good to bump post count)
Came off bike onto concrete 9/9/09 (lat meniscus, lat condyle defect)
LK scopes 8/2/10 & 16/12/10
RK scope 5/2/15 (menisectomy, Hoffaís fat pad trim)
LK scope 10.1.19 medial meniscectomy, trochlea MFX
LK scope 19.4.21 MFX to both condyles & trochlea, patella cartilage shaved, viscoseal, depo-medrone

Offline amy

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Re: Immobile fat pad and unable to walk. What do I do next?
« Reply #32 on: April 25, 2022, 05:51:01 PM »
Hi Kay

Yes I recieved the PM, I've really been struggling the past few days. I will try to PM you back tomorrow.

Amy

Offline CaliCoast

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Re: Immobile fat pad and unable to walk. What do I do next?
« Reply #33 on: May 17, 2022, 04:05:14 AM »
Hi Amy, sorry to hear about your situation. It sounds familiar and horrible at the same time.

I've had a little progress since I originally posted but nothing spectacular. I focused on not using my knee (relying on crutches) and daily passive extension stretching. I've progressed slowly but had a few days this month where I was able to fully extend my knee walking across my living room. These seemingly random episodes appear for an hour and then fade away like I never experienced it. I attribute this small progress to simple non-use for long periods (3+ months crutches).

I'm visiting AF specialists across the US and hearing opinions on my surgery options, but nothing sounds promising. I'm fairly convinced that I, and people with my condition, have some type of disorder that causes chronic joint and connective tissue sensitivity//swelling. (I have similar joint hypersensitivity in my hands, wrists, and hips.) I'm experimenting w/ radical diet changes, pro-longed fasting, and lifestyle changes to address first since any surgery seems like it would just be throwing gasoline on embers.

If you're completely resting your leg, then your story makes me wonder if something else, beyond the initial surgery trauma, continues to fuel your chronic fat pad swelling? I'm trying to find and interview individuals who have had specific profile like mine: pre-op history of anterior knee discomfort, meniscectomy and//or fat pad trim followed by loss of walking and standing. Have you met many others? Paths to AF and Hoffa's seem to be incredibly unique.



Offline DogfacedGirl

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Re: Immobile fat pad and unable to walk. What do I do next?
« Reply #34 on: May 19, 2022, 03:17:46 AM »
Hi CaliCoast,
Thanks for the update, it's great that you've seen some progress! All the very best with that, your lifestyle changes are impressive.

There is good quality research that indicates exposure to near infra-red radiation is very important to good health and immune system function. See this paper called Melatonin and the optics of the body 2019 by Zimmerman et al. http://www.melatonin-research.net/index.php/MR/article/view/19/213

Its a long paper but very interesting. The human body is made to be out in the sunlight all day, but now that doesn't happen. Only recently it has been found that near infra-red radiation is essential for making melatonin inside cells during the day. The melatonin is a powerful anti-oxidant that prevents the cell damage caused by normal metabolism, so it is powerfully anti-inflammatory. Unfortunately, oral supplements don't do the same job.

There are near infra-red radiation lamps available, but finding one that actually produces what it says it does, rather than the visible red light is not so easy. One paper suggested that red light could be detrimental and could cause problems for people with scar tissue problems. There is one company in Australia that makes NIR lamps that have the option of also switching on red light or off, and they say the right things, but I can't vouch for them. They are expensive. See https://www.therapylights.com.au/product/at-home-led-light-therapy/

Exposure to sunlight is the best way to get NIR, and it can penetrate light clothing and sunblock, so you can be sun-safe.

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 CaliCoast

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Re: Immobile fat pad and unable to walk. What do I do next?
« Reply #35 on: June 24, 2022, 06:08:05 PM »
Hi Kay, I've been seeing a lot of arthrofibrosis specialists, and most of them are saying that I DON'T have signs of arthrofibrosis.  My MRI shows minimal scarring, my patella is mobile, and although I can only reach -20 extension while attempting to stand, I can hit 0 (with discomfort) while laying down. (The doctor says this shouldn't be possible if I had AF since scar tissue is a "hard block", even passively.)

This is super confusing for me since my daily symptoms match AF. I could stand at full extension pre-surgery, weight-bearing exercises create irritation and reduce ROM, I have a finite # of steps I can attempt a day, my knee gets hot, I have to ice and lay off it for days to regain ROM, etc.

Should I be rethinking my condition here, calibrating how I'm approaching this, or am I getting turned around by semantics?

Offline DogfacedGirl

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Re: Immobile fat pad and unable to walk. What do I do next?
« Reply #36 on: June 25, 2022, 02:31:49 AM »
Hi CaliCoast,

There is a lot of confusion out there around passive and active ROM, and a lot of AF specialists don't even measure active ROM. However, what actually matters is only active ROM - how far the joint will move under gravity or with another force acting on it (somebody pushing it) is of little relevance. There is always some resistance before the "hard block" is reached, and this is enough to prevent active ROM.

So yes, you do have arthrofibrosis, with severely limited active ROM as well as obvious inflammation after activity. I would suggest that the AF specialists that you've been seeing only call themselves that because they charge money for people to consult with them. It seems to me that they're not open to learning, and that's what a real expert does.

If I recall correctly you have scarring of the Hoffa's Fat Pad, and that will certainly cause the symptoms you describe. Scarring may appear to be minimal on MRI but this is a reflection of the limitations of the imaging and of interpretation of images, and in no way reflects how much impact this will have on your life.

Do you feel that you're still making a little progress?

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 CaliCoast

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Re: Immobile fat pad and unable to walk. What do I do next?
« Reply #37 on: June 25, 2022, 09:45:12 PM »
Thanks, Kay for your input. The AF specialists are the same ones people have referenced on this forum with success stories. I won't name names but they're the most reputable in the country according to my research. Yet, your understanding of my situation is much more congruent w/ my daily experience than what I'm hearing from them. It's just so frustrating that even the experts--who have seen hundreds of patients with AF--have such an inflexible and outdated mental model. I don't get the disconnect.

And yes, I do have slight post-op scarring in my fat pad. The doctors believe it's negligible but perhaps the MRI just isn't seeing the full story.

I'm still progressing but at a glacial pace. I've started routinely having episodes of full active extension every day. I'm able to walk for 5-10 m but then irritation kicks in and my knee is worse the next day. I lay off it for ~3 days and then can't help but retry walking. It's an exhausting cycle of elation and despair. It took me 15 months to get to 5 mins of walking so can only assume it will be years to regain quality of life, if at all possible. 

Thank you, Kay!

Offline DogfacedGirl

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Re: Immobile fat pad and unable to walk. What do I do next?
« Reply #38 on: June 26, 2022, 02:02:50 AM »
Hi CaliCoast,
I shouldn't be too hard on the specialists, there is no training for AF and almost no properly conducted research, so it's hard for them to learn. But listening to what people experience is a good place to start!

As mentioned, your symptoms are well aligned with Hoffas impingement, and it's a shame that this hasn't been clearly spelled out with appropriate management strategies.

I hope you're able to keep progressing, even small progress is progress.

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