left knee: patella alta+former dislocation--> incessant pain, also neuropathic

[andreafiumi]

Premise (man, 50 years old, 1,91 cm tall, italian)
- 10 years ago I had a dislocation of the left patella due to high patella, slightly dysplastic trochlea. After that episode the kneecap actually remained a little unstable but I never noticed anything except that the muscle in my left leg was always smaller than the one on the right. The kneecap has never dislocated again

From 10 months
- For the past 10 months I have had continuous unrelenting pain in my left knee (which started as a result of intense walking and stairs done for training) which can be described as follows
o Pain in the lateral parts of the knee when I swim freestyle; pain in the knee when I change pool and give myself a push with my legs
o Pain, boredom and discomfort when I'm in the car and driving
o Pain after sitting for a long time
o Inability to play sports as I feel that my knee is not right and it bothers me afterwards
o Sense of awkwardness in standing movements (e.g. in the queue at the supermarket) and continuous crunching at the level of the kneecap if I extend my leg, stand up and/or hold my hammer foot
o Dull, continuous pain inside the knee, feeling like a doughnut around the knee if I strain my knee
o Feeling of my left leg being weaker than my right leg

This problem also leads me to have extensive neuropathic-style pain along my left leg localised
- On the part of the quadriceps that hooks onto the knee and also above it
- On the foot (underneath where I feel strange sensations)
- Between the knee and the foot
Moreover
o I do not feel any pain on palpation of the knee, tendons etc...
o I feel no pain in bed
o I often feel the need to extend my left leg with my hammer foot to have some comfort and stretch the muscles


I decided after 9 months, seeing that the physiotherapy I had been doing for 6 months had produced no results and the 6 infiltrations of hyaluronic acid and collagen had done nothing (as had the various rounds of cortisone taken orally as well as the several boxes of Diclofemac150 mg), to try an arthroscopy to understand the state of the cartilage

I had arthroscopic surgery at Rizzoli bologna italy where cartilage debridement and lipogems method was performed. Surgery done on 2 February 2023
During the operation they found grade 2 patellar chondropathy in both knees (clean) and chondropathy 2-3 lateral and medial tibial on the left knee. With my own eyes I actually saw the doctor cleaning the cartilage from the filaments that were coming down/up like when wool is fraying.... Arthroscopy also revealed patellar tilt on both left and right
After arthroscopy, stopped for 20 days and then slowly returned to normal with physiotherapy sessions etc....

Well, 2 months later I still have more or less the same problems as described above before the operation despite the fact that the muscle tone has rebuilt itself
The doctor who operated on me said that my knee wasn't that bad, that the surgery went well and that it doesn't explain the pain I continue to have. According to him, the pain I'm experiencing is not proportional to the type of problem.
He then suggested, as a trial and in the hope of stretching out the knee structures, that I walk on level ground using chopsticks and a knee bandage for 40 min/day. I tried it but after 3-4 times I felt pain the following day (in the form of boredom, discomfort, persistent pain in the knee). I therefore stopped taking my daily walks.
The doctor claims that the knee has a slight instability (post dislocation) due to high patella, tilt,.... but that if I have been walking for 50 years according to him that is not the problem....

In the end a NEUROPATHIC PERIPHERAL pain involvement was hypothesised so I am taking 50mg Lyrica/Pregrablim (to be increased to 100mg later). I started Lyrica a few days ago with oral cortisone (8 days).
I've had both electromyography and lumbar MRI and there are apparently no findings to justify the neuropathic pains I feel (yes there is bulging in the spine, .... but that doesn't seem to be the problem)

I wanted to ask your advice:
- What do you think about the peripheral neuropathic knee-related problems (can they be induced by high patella and slight patella instability, dysplastic trochlea)?
- Why do I get inflammation and a sense of winding up/running pain in my quadriceps that goes all the way down to my feet? The pain/symptom is directly related to his knee: the more I use it and irritate it, the more this type of pain is accentuated. If I sit still for a few days and do nothing the pain subsides. It seems, to put it simply, that the knee in its unloading movement somehow also irritates the nerve/muscle structures of the connected districts
- could it all be related to the problem of the high patella and the flexor-extensor component no longer working properly (after 50 years)? The cartilages should now be fine
- Are there any further tests you suggest I do? I have also had blood tests, remautology, electromyography, lumbar MRI but nothing relevant has emerged

thanks

[andreafiumi]

Hi Brandon

situation is more or less the same

Chronic pain to the knees without a clear diagnosis. Neuropatic pain also (a lot) . I explained many times to the doctors the syntoms , they saw RMI and RX and said not so bad... and then they are not able to correlate pain with a certain diagnosis. This is the problem

Currently i take Lyrica 150 mg/day (75 morning +75 evening) plus some food supplement for joints
Really no a step forward w/ the lyrica. Small improvments

Things  clear to me
- knees are inflamed - MRI shos blank liquid close to patella and in the inner part of the joint means something is not going i the right direction
- Knees are more red then the other part of the legs don't know why
- pain is growing a lot if i put the knees on stress (e.g. 2 hours of bike then same day i feel not bad, problem arrives day after and following ... need to put ice plus diclofenac etc...)
- i feel pain at swimming pool on left knee even if i don't move the leg (i think it occours becasue of patella  in different gravity situation)
- if i overdo sport then neuropatic pain arrive as well --> itching to feet and sensation of pulsating blood like
i have walked 20 hours, muscle became rigid,  need to take NSAID at least  for 2-3 days

I think i have visited 8 specialists in the last year, noone has been able to solve it.
Pain is actually producing to me a sort of depression since i cannot do the things i used to do...
it's one of the most trying things in my life

[b]If some one can help me or want to contact me please do. I can also go out of italy in case someone is able to solve this problem.[/b]
I will contact the person Brandom you suggested - i read the posts seems we have many things in common..

Regards

[andreafiumi]

I would like to send some messages but the systems says "You are not allowed to send personal messages."
how i can do to unblock this? I have not found any support to help me on this or e-mail to assit me
regards

[andreafiumi]

i solved i understood i need to have mor then 20 posts ...

[Brandon123]

Hi Andrea,

Sorry you are not improving. Good that you have contacted SuspectDevice, he is also a very active type who actually became depressed when he couldn't do sports like usual etc. He has even been open on this forum with that the fact he had to go on anti-depressants for a while. It has to do with your chemicals you are not getting when you are not as active as before. The mental challenge with knee issues can be really tough, as it often involves having to give up activities and stuff you love (temporary or not) and/or need to perform. And it can be even worse for athletes/very active people. But it is very important that you keep in mind that your situation right now is temporary and you will most likely get better, even if it takes a bit of time!

Best regards

[andreafiumi]

Many thanks Brandon, for me it would be very good to speak with someone that faced the same problem. I feel a bit alone in this story...

Is anyone having these synotms:
- knee pain due to patella alta and / or patello femoral issue
- feeling of stiffness in the muscles above the knee and below the knee after doing sports (espeically from 1 to 3 days after)
- feel knees hard as stones after sport (after long walking / bike / run)
- discomfort when driving the car
- neuropathic pain

Many thanks

[SuspectDevice]

Yes, I've been discussing my experiences with Andrea by PM.

Ironically, my old symptoms started coming back a few weeks ago when I was doing some stretches for my psoas muscles to try to relieve a groin/adductor/lower ab problem I've had for over 2 years now, which seems to be exacerbated by running and some other movements. Just like with my knees, I saw a Sports Doc who have me strengthening exercises & activity modification (no running, limit fly-fishing) which helped but did not solve. Then I read on Dr Google how triathletes often get tight psoas due to cycling which leads to groin etc. pain. Started doing psoas stretches and very soon felt improvements.

Problem is, one psoas stretch involves kneeling, which started to kick off my old knee burning/aching/stiffness again. So it is still lurking in the background.

But at least I now know what the problem is and how to solve it. And that it is not a structural problem but a chronic inflammation issue which can be re-activated through certain activities.

[ArmstrongK]

I’m in the same boat as you guys. I’ve tried it all! I’ve had 6 knee surgeries including a patella allograft and osteotomy, lateral retinaculum lengthening procedure, many PRP injections and HA injection, several stem cell injections, braces, rehab, creams, meds like celebrex and lyrica and tramadol. I did find BMAC injection to be helpful for about a year.
Even though I have grade 3 Patellofemoral arthritis, the surgeons tell me it’s not that bad and they don’t understand why I have so much pain. I think the pain is from the swelling (perhaps the synovitis is the culprit). I’ve also been told that hoffas fat pad has a lot of nerve endings and could be impingement and inflammation of the fat pad. Others have said pain could be from the position of my patella. Who knows.
I feel like the diagnostic tools being used like standard X-ray and MRI are missing something. They can’t tell you the origin of the pain.
It’s all so maddening and frustrating. I feel like these surgeons should know more by now and have something else to offer.
I’m currently looking into doing cultured stem cell treatments with Dr. Prodromos in Chicago.
What other treatments are u guys going to try?
Please let me know if u figure anything out!

[andreafiumi]

Hi
i am thinking to do this: Cryoanalgesia
basically it allows the nerves of the knee to be numbed for ca. 1 year
Check it out
What is a mystere for me are the causes behind the pain since the cartilage defects are not so heavy (grade II)

[The_KNEEguru]

Is this the same as Cryoneurolysis?

Here is the summary of this paper: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10107282/
Biel E, Aroke EN, Maye J, Zhang SJ. The applications of cryoneurolysis for acute and chronic pain management. Pain Pract. 2023 Feb;23(2):204-215.

"In summary, this narrative review demonstrates that cryoneurolysis is very much a safe and effective treatment for many acute and chronic pain conditions. It provides great pain relief with less risk compared to other forms of neurolysis. Furthermore, cryoneurolysis may be a viable option to treat other intractable neuropathic pain where the nerve is superficial and can be identified under ultrasound. As ultrasound use becomes a more standardized tool in clinical practice, anesthetists will be able to routinely perform cryoneurolysis both perioperatively and in the outpatient management of chronic pain. Pain management techniques are continually improving to provide enhanced benefit and safety for all patients. Cryoneurolysis has demonstrated great potential, but further research should be performed to better quantify the benefits of cryoneurolysis for an array of acute and chronic painful conditions."

[andreafiumi]

exactly this! many thanks for the article

I would like to test on myself...

I cannot tolerate to live with constant pain
My knees popping and I feel clumsiness, pain in the knees. as soon as i stand up the pain starts and i enter in a dimesion of clumsiness and strange sensation of imbalance and precariousness
I feel my knees as weak as on crystals
I don't know how to get out from this tunnel guys.....
Is it possible that medium degree of cartilage can provoke all these hell?
incredible, help

[The_KNEEguru]

This course (now old) - /KNEEnotes/articles/general-articles/20 ... moral-pain - is still worth a read.

I remember some years ago that a forum member by the pseudonym of 'missmyknee' (Pam) struggled with unremitting pain from a neuroma. She is no longer active on the forum. She wrote an excellent blog, but we made a decision some years ago not to encourage blogs from readers, as Google needed to see that our informational content was produced by qualified medical professionals, so I unpublished her blog.

However, it is still in our archive, and I am sure Pam would not mind at all that I reproduce this one here -

" I've been dealing with neuromas since Oct 2007 and it's now 2011. What is a neuroma you might ask ? A neuroma is a nerve with a ball of scar tissue around it. The nerve is traumatized, for example from surgery then scar tissue forms and compresses. The errant nerve fibers grow out, like spaghetti, and twist around with the scar tissue to form a ball or nodule. These errant nerve ends cause a lot of pain. I have Arthrofibrosis, which means to form excessive scar tissue, so I have no problem forming scar tissue around nerves ,esp from multiple surgeries.
Most of my neuromas form along the infrapatellar branch of the saphenous nerve. The infrapatellar branch (link is external)comes off the saphenous nerve(link is external) on the medial side of the knee and goes across to the patella and below. My nerve pain takes on many forms. It can be an intense burning, a burning flare, intense throbbing, multiple hard needle like sticks and very sensitive to touch. Nerve pain is very hard to treat. Narcotics don't work as well, taken alone. Nerve pain is managed with a "cocktail " of meds, usually prescribed by a pain management specialist. These meds can be a combination of antidepressants, anticonvulsant meds, narcotics and hypertensive meds, various gels and lidoderm patches to name a few. Each one of these drugs works at a different receptor site in the brain or spine, to block pain.
Other methods of treatment include e-stim modalities(link is external), ultra sound(link is external), conductive garments ,(link is external) nerve decompression/resection surgeries(link is external), cryoablation, (link is external)and the last resort,a spinal cord stimulator(link is external). I've tried 4 of the above. My journey thru nerve pain and the various treatment methods I've tried, are chronicled thru my thread titled, OPEN DEBRIDEMENT AND PROXIMAL Z-PLASTY
My pain management doctor brought up the possibility of trying cryoablation to the neuromas in my knee. Cryoablation freezes the nerve into an ice ball. The procedure leaves the nerve sheath/tube intact , so if and when the nerve regenerates, it still has an intact sheath/tube to grow in. This frozen nerve will last anywhere from a couple months, to about 1 year. I read about it, but there really wasn't anything out there about people's experiences with cryoablation. Last year one of the kneegeeks went through this method of treatment for her neuroma. She briefly posted, then dropped off the site. I would like to tell my experience with cryoablation to provide firsthand account of what to expect.
Cryoablation is a surgery, so you are prepped for surgery. This involves getting into a gown, signing permits, and getting an IV. I will receive 2 meds thru the IV. One is Fentanyl for pain and Versed to lightly sedate. You have to be awake enough to provide feedback to the Dr performing the procedure, which was my pain management doctor. I marked 10 neuromas on the medial side of my knee with surgical marker. You are wheeled to the operating room, where everyone is gowned and masked up. Sterile drapes are placed over you and you are hooked up to the heart monitor , BP monitor, O2 monitor and an O2 nasal cannula is placed in your nose. My leg was prepped with orange surgical betadine from ankle to mid thigh.
The Dr proceeded to start with the first marked neuroma. He pushed down to feel the BB or pea sized nodule , which also elicited pain for me to say, that was the spot! He then injected a little local anesthesia to numb the area, to insert the cryo probe, which was the size of an ice pick. Once the probe hit the neuroma (ouch !) they had to run 2 stimulus tests. One was to stimulate to make sure it was not a motor nerve and then to stimulate for sensory nerve. A motor response would make my leg move and sensory , well , elicited a painful response. We were looking for that painful response. BINGO!
Once the sensory test was done, then the cryoablation took place. The probe would then freeze the neuroma for 5-7 min, which hurt at first. I was given a dose of Fentanyl and Versed to counter the pain. Then it was turned off, for a 2-3 min thawing period, then a second cryo period began, lasting another 5 min. This procedure was repeated each time, to the other 9 neuromas, and each time, I received a dose of Fetanyl and Versed.
The whole procedure took 2 hours. After it was done, my leg was cleaned off and a pressure dressing of gauze pads, kerlix and ace wrap was applied. They wheeled me back to the recovery room. My vital signs were monitored for about an hour. Everything checked out OK , so after an hour I was allowed to go home. I was supposed to limit activity and ice and elevate my leg for 48 hours. I was able to walk OK . I was tired from the whole experience and slept when I got home.
We planned on having another cryoablation a week later, because other areas to ablate would show up. I couldn't believe I was going thru it again, but I had 10 more areas to be done. I marked them all with surgical pen. Then whole process was repeated as above and lasted 2 hours.
Aside from being sore, I enjoyed several weeks of no nerve pain in the knee. Unfortunately, the cryoablation was not able to reach the nerve pain going down my medial leg and across the top of my foot. Just to have the pain gone for several weeks in the knee was pure heaven.
It's now been 5 months since the cryoablation. The nerve pain has slowly returned. I am back to having monthly local anesthetic injections and blocks to the knee. My pain management Dr is trying to get the hospital to buy a cryo machine for the clinic. The one he used on my knee was brought by the rep and not to keep. I feel it was beneficial for neuromas. Most people only have 1 neuroma to ablate, not the 10-20 I had.
I highly recommend cryoablation as a method of treating painful neuromas and I would go thru it again if I was offered the chance.
Pam"

[The_KNEEguru]

Also read up about CRPS just so that you know about it - https://www.kneeguru.co.uk/KNEEnotes/kn ... n-syndrome.

[SuspectDevice]

The other thing that may be the case for all of us is central nervous system pain sensitisation. Sort of a fibromyalgia type thing. I notice sudden loud noises affect me much more than they used to which is a symptom of this type of issue.
I'm also quite sore in many other places these days (wrists, shoulders) but I find these improve with movement/exercise, but get worse being sedentary, when I get up in the morning.
Dr Lorimer Mosley here in Oz has done a lot of work on this type of pain. I was on Lyrica for a while too, but it did not seem to help.

https://www.tamethebeast.org/

https://people.unisa.edu.au/lorimer.moseley

https://www.google.com/search?q=dr+lori ... s00nM,st:0

[ArmstrongK]

Hi guys,
I wanted to give you guys an update so that hopefully the information will help some of you.
I recently went to the Hospital for Special surgery in NYC and saw Dr. Gomoll who is a Patellofemoral specialist. I have very similar symptoms- the dull aching, sometimes sharp, sometimes burning pain in left lateral knee. Dr. Gomoll told me that the type of wear I have (cartilage damage of the inferior patella) and the impingement of hoffa’s fat pad is common in people that have patella Alta.
I went to see him hoping to get a Patellofemoral replacement but he said I still have cartilage left behind the patella (I’m not bone on bone) so I don’t yet qualify for the replacement. He also said that he has some patients that have received the PF replacement but come back to see him because they still have pain. So, it’s not like the replacement magically gets rid of the pain.
Hoffa’s fat pad edema can cause that burning sensation in the knee and is from alignment issues,
He suggested a distilization osteotomy. I think that I might do this. Has anyone else had this done?
I do think some of the pain is from the arthritis of the Patellofemoral joint as well because I had a lidocaine/Toradol injection into the joint and I got pain relief for several hours.
Anyways, maybe this will help some out there with similar symptoms!