The WAITING ROOM => GENERAL KNEE QUESTIONS and comments (good for new threads) => Topic started by: knee always hurts on November 04, 2010, 08:51:15 PM

Title: Knee in severe pain, no explanation
Post by: knee always hurts on November 04, 2010, 08:51:15 PM
After dealing with a severe inflammatory problem with my left knee for several months, which was never diagnosed, I was finally making progress, and by late August, I was actually feeling that my knee might have a chance of being normal again. But just as that problem was going away, a new problem started in a different part of my knee. All of the sudden, at PT, I started getting subtle sharp pains when doing step ups and squats. It was getting worse, so my physical therapist and I agreed that I should take a break. At first it seemed like it was improving, and although I was using a cane to climb stairs, I was walking without much pain. In the last few weeks, however, my knee has rapidly deteriorated. I started getting a lot more sharp pains in my knee when walking, and my knee had this strange sensation of emptiness.

Then, on Tuesday morning, I woke up in the middle of the night with pain severe enough that I had trouble falling back asleep. When I woke up in the morning, the pain was even worse, so I decided to go to the ER. I couldn't put any weight on that knee without experiencing severe sharp pains. On a scale of 1-10, I rated it as 8 or 9. At the hospital, the doctor decided to order an X-ray, but it came back clean. The doctor said that the joint space looked fine. He manipulated my leg, and I didn't hear any crepitus or feel any grinding sensations. I asked about an MRI, but the doctor didn't want to order it just yet. He prescribed naproxen and vicodiin, and while it seems to help, I am still in constant pain.

The pain is localized to the superolateral corner of the patella. I thought perhaps that my cartilage was just completely destroyed in that location, but the doctor didn't think that the problem is cartilage at all. He didn't suggest anything else, though. He just advised me to take the anti-inflammatory medication, continue to use crutches as needed, and suggested that it would probably start to improve.

What could possibly cause such debilitating pain in that part of the knee? As a result of being in pain for so many months, I've studied a decent amount of knee anatomy, and I can't figure out what could cause this level of pain in such a short period of time. I should mention that I've had an extremely low level of activity the last few months, so this didn't happen when doing strenuous exercise.

I haven't tried to bear weight on in the last couple of days, so it's possible that it has improved somewhat. But I now have this feeling of "fluidity" in my knee, and it doesn't feel much better than a couple of days ago. I should mention that there isn't any visible swelling, either. I'm really worried that something could be seriously wrong, but the doctor didn't see any cause for alarm.

What could it be?
Title: Re: Knee in severe pain, no explanation
Post by: SqshPlr8 on November 05, 2010, 05:18:32 AM
Geez man.  I am sorry to hear.    :-\

Has your insurance come through yet? Do you have an appt. scheduled?

Perhaps it is ultra-innervated, impinged synovium?   
Title: Re: Knee in severe pain, no explanation
Post by: knee always hurts on November 09, 2010, 10:51:43 PM
A week has passed, and the medications given by the ER doctor haven't worked. I actually had to stop taking the naproxen because it was bothering my stomach. But I took it for 4 days and it did nothing. I still can't bear any weight on my knee without experiencing severe pain. It almost feels like there is liquid in my knee as well, but there is no swelling. My fear now is that my leg is going to waste away. I don't think I'll ever be able to bear weight on this knee again without surgical treatment. Should I go back to the ER or wait until my insurance is approved? I've read that it can take up to a month for that to happen. I submitted the papers about a week and a half ago, so I could still be waiting for 2 1/2 to 3 weeks, and then I have to make the appointment and wait even more. How long can I safely go non-weight bearing before it is a serious problem? I don't want to jeopardize potential treatment options as a result of severe muscle atrophy or cartilage softening. If I go back to the ER, I imagine they'll just give me more pain meds, which haven't worked, and that's it. So what's the point?
Title: Re: Knee in severe pain, no explanation
Post by: kscope09 on November 10, 2010, 12:28:50 AM
If you go back to ER what will they do?

I think if your having that much trouble it it then maybe you couldn't get any worse by having a scope.  What does the pt say about it?
Title: Re: Knee in severe pain, no explanation
Post by: knee always hurts on November 10, 2010, 12:51:02 AM
That's what I'm wondering. I imagine they won't do much at all. They suggested that I make an appointment to see a specialist, but the sheet I was given also suggested that I could return to the ER if needed. But if they're just going to give me more pain meds that aren't actually working, then what's the point?

I agree about the scope. If you've read any of my other posts, you know that I was willing to try a conservative route until the end of time or at least the limits of practicality if I thought it had a chance of working. It seems all but hopeless now so I'm resigning myself to the reality that surgery is in my future, with all its pitfalls.

I haven't gone to PT in over a month because of the insurance situation and because my knees were getting worse. They stabilized for a few weeks, and then my left knee got dramatically worse last week. I don't understand how my joint could be in such a disastrous condition since I didn't have any knee problems prior to Sept. last year, and I've never had a hard fall on them. I hope this pain is not the result of a chondral injury, but am having a hard time understanding what else might be causing it. Even though all knee problems are bizarre, I'm certain that all of us on this forum agree, I at least knew what the precipitating factors were with my other knee problems. I almost thought I was cured and then this problem started out of the blue at PT. And it happened in only a couple of months. Go figure!

Hopefully whatever this is, it ends up being something with decent treatment options. I feel like a complete fool for not getting my insurance situation dealt with sooner. Of course it's just my luck that my knee decides to go south just a few days after I apply for the insurance, yet long before I actually get it! It's agonizing not knowing what is wrong!  :'(
Title: Re: Knee in severe pain, no explanation
Post by: kscope09 on November 10, 2010, 11:28:34 AM
I'm not gunho for scopes believe me, my experience with arthtoscopy las tyear was not a pleasant one, but I might need one for the other knee sine the physios have thrown up their hands and said there's nothing more we can do.  When i first injured my right knee in feb 08 the thought of surgery was quite sickenning but believe me, 18 months later with much more medial pain and catching that drove me round the bend I was ready to cahcne it and as hard as it ahs been I don't regret it even if my plicas grow back and my chrondopalsty fails, at least i won't have that bloody fragment floating about anymore.

The thing is though, if you can't put weight on it now and it keeps getting worse it might be time for the surgical route.
Title: Re: Knee in severe pain, no explanation
Post by: coral 251 on November 10, 2010, 12:21:28 PM
Hi, sorry to hear of your pain problems,have you had a CT scan?,apparently this shows up problems more than just an xray,if not, may-be you should request one.
Hope you get it sorted,wishing you all the best.
Title: Re: Knee in severe pain, no explanation
Post by: surrender on November 10, 2010, 01:25:34 PM
Please keep us posted as to what you find out.  It will benefit this forum in case someone else finds themselves where you are.  We are interested in what happens to you  and want to encourage you.
Title: Re: Knee in severe pain, no explanation
Post by: cdubb on November 10, 2010, 04:21:33 PM
Dumb question and maybe I misssed in in reading through this, but it seems there is talk about having a scope done, but I don't see where you have had an MRI and an evaluation by an orthopedic yet?  Am I missing something? 
Title: Re: Knee in severe pain, no explanation
Post by: knee always hurts on November 10, 2010, 10:12:39 PM

The first time I felt like I might eventually be on the surgical route, I felt sickened as well, especially considering that I've never had surgery for anything. But at this point, if they said hacking it off was a good solution I think I'd go for it.


I think at this point the doctors will be ordering scans, as my condition has proved recalcitrant and is in fact getting worse. I certainly hope so, as I can hardly stand not having a diagnosis any longer.


Absolutely, I'll keep everyone posted every step of the way. I'd love to know what the original problem was, and if I'm correct in thinking that it caused damage to something else.


No, not a dumb question at all. I asked for an MRI months ago and was refused. They wanted me to go to physical therapy. One doctor acted like I was nuts and that there was nothing wrong with me, another one told me that he "sees this 2 or 3 times a day". When I went to the ER, they gave me an X-ray, saw nothing wrong, and sent me home. In retrospect, I think if I was a little more persistent I could've secured an MRI before this point. But given the way I was treated, I honestly was hesitant to go back to the doctor. That was a big mistake. As soon as I get insurance, I'll be making another appointment to see an OS.

It's just my luck that another problem is emerging in my right knee. I can no longer bend it to an extreme of flexion without this severe dull pain in the general vicinity of where it has been sore. Can a week just go by without something else happening? Would it be alright if I climbed the highest tower and jumped off?  ::)
Title: Re: Knee in severe pain, no explanation
Post by: surrender on November 10, 2010, 10:22:40 PM
I'm so sorry!  Sometimes I wish doctors could "feel" it 2 or 3 times a day.  Seeing and feeling are two different things!  Hang in.  Post often when you feel discouraged.  There is a solution and you will find it.  I'm sure you have searched the internet.  Does Knee Geeks have a section for contact with physicians via the site?  I might be wrong but I thought I saw that somewhere.  Anyone know what I am talking about?
Title: Re: Knee in severe pain, no explanation
Post by: knee always hurts on November 10, 2010, 10:35:57 PM
It's probably going to be a month or more before I can get this looked at. And in the mean time, my left knee is completely and utter ruined, and my right knee is taking all of my weight, despite the fact that it is injured! I'm just hoping the the RK can hold out until then. I know that I can crawl and pull myself up to the toilet, so at least I won't need a bedpan! But otherwise, it will be breakfast in bed. I hope not!

I can't stand the way I was treated by the local hospital system. I'm looking at going to a doctor in Boston, but can't really start to move in that direction until the insurance situation is sorted out. I'm applying for Masshealth, which is the name for Medicaid in Massachusetts. Does anyone know if I would need a referral to see a specialist with Medicaid? I can make an appointment right now and send the bill after the insurance is approved, but only if it would otherwise be covered. If I needed a referral and didn't get one, it won't be covered. Maybe I should make some phone calls and find out. I really hate to think that I'm going to have to wait weeks before even making an appointment.

Complicating things further is that there are multiple plans and I'm not even sure which one I'm going to be on. This is a nightmare, folks. I know many of you are in Canada, Australia, the UK, or some other country with single-payer health care. I know there are problems inherent in every system, but what I wouldn't give to be in one of those countries right now!
Title: Re: Knee in severe pain, no explanation
Post by: Snowy on November 11, 2010, 06:35:15 AM
Ack - so sorry to hear this. I know you've been wrestling with your ongoing problems for a while and were finally seeing some progress, so it seems especially unfair that this has happened.

At this point it seems like the best thing you can do is start making those phone calls and find out everything you can about the insurance situation. Are the wait periods mandatory, or down to paper pushing? If the latter I'd suggest the "polite pain in the ass" route - just call the company every single day, bugging them very nicely about getting everything through quicker. When I was referred for surgery here I was told that it would be a minimum wait of a year, more likely closer to two, before I saw an OS. I couldn't accept that, and a series of polite but very persistent phone calls eventually got me a consult six weeks after injury and surgery eight weeks after that. Sometimes the system fails, and you have to become your own advocate. It won't always work, but it's worth a shot.

Wishing you're in a tough spot, and I really hope you can find a way out of it.
Title: Re: Knee in severe pain, no explanation
Post by: knee always hurts on November 11, 2010, 06:49:47 AM
I certainly hope I don't have to wait 2 years! My muscles and sinews will be reabsorbed into my bloodstream by that point!

The PPITA route might be what I end up having to do. "You can't let a 26 year old's leg waste away irreversibly, can you? Pretty please can I go to that surgeon?"  :'( :-* ;)
Title: Re: Knee in severe pain, no explanation
Post by: Snowy on November 11, 2010, 07:07:54 AM
Don't panic too much - the two year wait is the down side of those single-payer health care systems that you mention. I live in Vancouver, which has some of the longest wait times in Canada. I'd pretty much accepted the fact that we were going to have to travel to Victoria and stay with my in-laws to get the surgery in a reasonable amount of time, but it was surprising how fast the PPITA route (love the acronym) got things happening once I committed to being really persistent with it. I'm also really happy with the OS I got as a result, which is a bonus.

It's probably fair to mention that I did pay for my own MRI (wait times are approx 6 months) just to get the ball rolling - I couldn't get the referral to the OS without it, and it seemed crazy to wait 6 months when four doctors had told me they were certain I had a completely ruptured ACL. It wasn't cheap, but I don't regret it - about a month ago I finally got a call from the MRI department saying they had a date for me, and I just laughed and told them I'd had the surgery in July and was well on the road to recovery. That's not to say I spent the money lightly, but ultimately your health is the most important thing and if there's a bit of strategic spending that can hurry things along, it's worth considering. (Budget depending, of course.)

I'm racking my brains trying to think of anything that could cause the level of pain you describe. My PFS sometimes felt like I had two rotten teeth in place of knee joints, but it never interfered with weight-bearing - even at its worst, I could take weight through the knees. It seems way too sudden and severe for cartilage failure. Some kind of really extreme synovitis, maybe? It might be worth trying some other NSAIDs...I found Naproxen pretty useless and got a lot more relief from Diclofenac. It might be worth going back to the ER just to get a different prescription to try.

Again, sending you well wishes...I'm so sorry this has happened to you, and really hope there's something that can help while you wait for the insurance to kick in.
Title: Re: Knee in severe pain, no explanation
Post by: cdubb on November 11, 2010, 08:57:38 PM
I agree that the way it is so sudden and severe and with the inability to bear weight doesn't make it seem like cartilage failure issues.  I have grade 4 defects on my patellas in both my knees (1 week status post left ACI/AMZ) and even when they were at their worse,  I could walk normally but for the occasional sharp pains that stopped me in my tracks. Stairs and ramps near impossible, as were any other increased load on the job, but standing and normal wakling, okay for the most part.   People walk on torn ACL's and torn meniscus often walk normally before surgery.  Difficult bearing weight is odd with no trauma??  The sudden, severe and bilateral almost makes me wonder if it is some sort of rheumatological/auto immune issue?? 

In the interim until you get insurance sorted out, I'd do as much non weightbearing exercises as you can.  4 way straight leg raises, quad sets, clamshells, etc. 

And as much as our health care system isn't the best, I am grateful to not be in as single payor system for all the reasons listed below by those that are in one.  You may end up waiting longer than you are now to get proper insurance to cover your care.  At least now pre-existing conditions can't be excluded.  When the right insurance is in place, you can treat with whom (plan parameters) you want and generally fairly quickly.  You'll still have out of pocket costs, but I feel that people should bear the financial burden to a degree with medical treatment...that being said...medical bills suck to pay!!!  We're hitting out out of pocket max protection this year, which is $5000....that's a lot to spend to get to that point....that's why I wanted to ensure I got my ACI/AMZ in before the end of the year. 
Title: Re: Knee in severe pain, no explanation
Post by: knee always hurts on November 12, 2010, 06:08:25 AM
I think my right knee is bothering me more as a result of using the crutches. Still, it is strange that it would be to that extent.

The left knee is really bizarre. I was making incredible progress at PT, and then suddenly started getting sharp pains at this new location. I should note again that I don't think that the original problem was PFPS, despite the diagnosis. The symptoms I was having, I now realize, didn't really match the description of anyone else with the condition. It seems that it was a highly vascularized and innervated tissue that was irritated, and it was extremely inflamed for a significant period of time. My question is, can a tissue that becomes severely inflamed as a result of mechanical impingement cause subsequent chondral damage? I've tried to search for an answer to this question and haven't found a single mention of it. The only thing I'm aware of is that the inflammation of rheumatoid arthritis can damage joints. But I can't find any mention of chondral injuries other than as a result of wear and tear over years, or a major direct blow to the affected area. It just makes no sense. I have to think that the previous condition has some connection to what I'm experiencing now, but I don't fully understand why that is. I would be as happy as a pig in poop if it ends up not being the cartilage at all, especially given that it must be pretty substantial damage to cause this level of pain. I agree that it doesn't make a whole lot of sense, though. How could it be a slight pain just two months ago, and suddenly become debilitating? I've also read the cases of some people that have gotten the ACI procedure, and in some cases they have absolutely huge lesions. Like 10-15 Sq. cm. And they are generally still walking before the surgery, right?  ???

It will be fascinating to ultimately find out what this all is, I guess. But right now it is quite terrifying!
Title: Re: Knee in severe pain, no explanation
Post by: smillie on November 12, 2010, 04:51:01 PM
Don't pin all your hopes on an MRI. There was nothing very revealing in mine and I think it may even cause the OS to take your pain even less seriously. My x-rays reveal my issues much more clearly.
Title: Re: Knee in severe pain, no explanation
Post by: kscope09 on November 12, 2010, 05:36:55 PM
Sorry if you've mentioned this earlier Knee always hurts but have you had any scans done on your knee at all.  If you havn't then there is still chance of an explanation before the scope goes in.

Also, I'm curious how you crawl around.  Sureley it emans getting down onto the floor and then back up again and dragging your knees along the floor and that can't be good for them.  I fyou still have a good knee and a pair of crutches then why drag yourself around?
Title: Re: Knee in severe pain, no explanation
Post by: cdubb on November 12, 2010, 06:33:05 PM
Good luck in your search to find an answer.  Let us all know when you get one.
Title: Re: Knee in severe pain, no explanation
Post by: markld on November 12, 2010, 06:38:18 PM
You need to see a knee specialist!
Title: Re: Knee in severe pain, no explanation
Post by: knee always hurts on November 12, 2010, 08:14:36 PM
I've only had an x-ray on the left knee, twice actually. Both times the doctor said it looks completely clean. But an x-ray can only see the joint space, which is fine. If there are other problems or defects inside the joint, it's not going to show up on the x-ray. With certain types of soft tissue irritation, you're going to have an inconclusive MRI, as well.

I'm actually crutching around right now, and it has been fairly painful on the right knee at times, but not so much that I would stop at this point. But given how strangely my knees have been acting the last couple of weeks, I wouldn't be surprised if I end up suddenly bedridden.
Title: Re: Knee in severe pain, no explanation
Post by: kscope09 on November 12, 2010, 09:46:36 PM
I've seen from your posts that your in a dark place with your knees I am too at times and it fluctuates from I think one day I'll be back in the Dojo and I can imagine myself doing Karate again and being the person I used to be and the days when all I can see ahead is degeneration and dissability an old man at 29.  I think thsoe fluctuations are the worst thing because when you think things are going well suddenly something comes along that sends about 10 steps back.  I thnk we've all experienced this kind of thing here.

But please don't say there is no diagnosis until every non-surgical diagnostic test has been performed.  Get an mri and see a knee specialist.  I was told by no less than 6 healthcare proffessions (3 gps and 3 pts) that my knee was normal and I was fine and it was all in my head, but when I saw a knee specialist he had a look at my knee and actually listened to me and he believed I ahd a chondral defect and talked to me about microfracture.  When he scoped me he found plicas, a torn acl with a loose fragment floating around and he found th chondral defect which only small went right to the bone.  Before the scope he was the first person to take me seriously and actually believe me.  I had mris and they showed nothing, but I still think you should give them a try.
Title: Re: Knee in severe pain, no explanation
Post by: knee always hurts on November 15, 2010, 02:21:40 AM
Alright, this is getting just plain strange now. For the last couple of days, I'm getting shooting pains in the area of the medial tibialfemoral joint in my right knee. All of my pain has always been patellofemoral, never TF! And a couple of days ago my hands were tingling like crazy, and there was a burning sensation behind my eye. There doesn't seem to be any circulation problem in my hands, so why would that happen? I had also experienced similar symptoms a few months ago, but it subsided. I'm starting to wonder if cdubb is correct, that it might be something systemic. I was thinking, what diagnosis could account for all of my symptoms? I'm starting to feel like a patient on an episode of House!

Some of the symptoms that I've experienced over the last couple of months include:

Mood swings
Panic Attack
Brain fog
Blurred vision
Whooshing tinnitus in ears
Difficulty sleeping
Tingling in hands and feet
Burning sensation behind eye
Hot and cool sensations in different places on body
Shooting pains
Heart palpitations
Blood pressure not "high", but higher than it has ever been
Upset stomach
Knee Pain with sudden onset
Gum pain
Other joint pains and stiffness

Could this possibly be all coincidence, or is it likely to be a single condition causing all or most of it? I've scoured the internet looking at symptoms of various diseases, and the only one that closely matches all of this is Lyme Disease. I got a test 6 months ago and it came back negative, though. I've since been reading that the test is notoriously unreliable. I know if I went back to my GP asking for another Lyme test he would think I was plainly and completely nuts. I don't think that all of my knee pain is caused by this "mysterious" condition, since some of it was pretty clearly mechanical in origin. But how could a new problem develop every few days, just suddenly for no apparent reason? And I have all of these strange sensations and unexplained psychological issues. That panic attack was strange since I've never had one before. Sometimes I just feel so horrible, it is difficult to describe it. I've looked up symptoms of anxiety and it really doesn't explain it. Another symptom I've only had a couple of times is when getting up in the morning, I had a sudden feeling of nausea in the pit of my stomach, and at the same time my vision blurred and a I experienced a whooshing tinnitus in my ears. It stopped after lying down for a few minutes.

Oh, and I live in what is considered one of the LD hotspots, and I used to walk or run in the woods almost every day.

If I was considering this as a possibility, what should I do? Find a new GP and mention it to them? Mention it when I see a knee specialist?
Title: Re: Knee in severe pain, no explanation
Post by: Snowy on November 15, 2010, 02:56:44 AM
I'd go back to your GP and ask to be tested again, regardless of how crazy he thinks you are. If the test is unreliable, you've been in an area where you could be exposed to Lyme Disease and you're still experiencing a lot of matching symptoms, you have good cause to ask for the test to be redone. Your health is the most important thing, and if this does turn out to be the answer then it will be worth having pressed for the retest.
Title: Re: Knee in severe pain, no explanation
Post by: knee always hurts on November 15, 2010, 03:25:20 AM
I actually had far fewer of the symptoms 6 mos. ago, but thought it would be a good idea to "rule it out". I sort of forgot about it since then, but I decided to take another look in light of all of the bizarre symptoms of late. Now, it's amazing how many symptoms match. There are even a few more I could list. Of course, the symptoms could be the result of my sedentary existence over the last few months, and frustration with the intractability of my knee pain. This might be the most likely scenario, since LD isn't that common, even here. On the other hand, my dog (About ten years ago) and my nephew's best friend (Last year) were both confirmed to have it, so it isn't that terribly uncommon, either.

I think you're right. However likely or unlikely it is that I have it, I had better find someone to administer another test, or even just prescribe anti-biotics on the basis of the symptoms that I currently have. It's not worth taking a risk with my longterm health.
Title: Re: Knee in severe pain, no explanation
Post by: kcknee on November 15, 2010, 04:31:38 AM
My first thought was Lyme Disease too when I read your symptoms. Several years ago there was an episode on a show called "Mystery Diagnosis" here in the US that featured a patient that presented with a lot of your symptoms plus migraines and had always tested negative for Lyme. A few weeks after the show was on, my husband told me about a friend of ours that was suffering almost all of the same symptoms that you have along with frequent migraines. He had been suffering for almost two years and was giving up hope. He was incredibly depressed and had stopped enjoying everything. He had even pulled his car over to lie in the back and wait out the headaches. He had seen numerous doctors with no help. I called and told him about the show and how it stressed to go to a Lyme specialist since there were additional advanced testing that could be done for advance Lyme Disease. Once on antibiotics his symptoms eventually went away. I'm sorry that I can not remember what exactly they were testing for but it was for advanced established Lyme Disease.

Good Luck.

Title: Re: Knee in severe pain, no explanation
Post by: knee always hurts on November 15, 2010, 04:44:30 AM
I can't say that I've suffered headaches or migraines, but these sorts of diseases often manifest differently in different people. Therefore, what the doctor is looking for is a cluster of symptoms rather than any one specific red flag.

What is frustrating is that even if I do have LD, I doubt that it is the origin of all of my knee problems. So even if I was cured, I'll probably still have knee issues to deal with. Additionally, I'll still have the circulation problems resulting after icing back in June, which doesn't appear to be a possible symptom of LD. I guess that it is possible to have many different problems concurrently, but it is getting to be too much. My head spins just thinking about how many doctors I might have to end up seeing to deal with all of these things, and what the final outcome might be.
Title: Re: Knee in severe pain, no explanation
Post by: SqshPlr8 on November 15, 2010, 07:07:55 AM

There are a number of tests for LD, the most common of which test for antibodies of the disease.  If my memory serves me correctly, there was a "Mystery Diagnosis" episode that had a patient who tested negatively for the antibodies over and over and over again.  Later on, though, he finds out that his immune system was so compromised (b/c of medication or the disease itself?) that his body was not making the antibodies.  Only after getting the more direct, "expensive" test (e.g. PCR-based) did he finally get the right diagnosis.

That said, I had symptoms very much resembling yours seven, eight weeks ago.  Nearly all my joints hurt, including my TF joint. I was convinced that something systemic was going on.  Once I had my "semi-psychotic" break and started moving around simply to move around did those symptoms go away -- everything except the knees.  Of course, I could still have both mechanical knee pain and something systemic.  But, at least for me, moving around -- along with re-socializing myself with people and seeing a psychologist -- seemed to completely allay those newer symptoms.

Any word on the insurance?  Hope things start getting brighter, soon ... :-\
Title: Re: Knee in severe pain, no explanation
Post by: kscope09 on November 15, 2010, 11:22:55 AM
I saw ashow about Lime yesterday.  It was about this girl who as a model and she'd had spinal meningitis and was supposed to be cured but her symptoms never went away and she went to litterally hundreds of doctors and they all said it was in her head.  Then eventually they found she had Lime's disease.
Title: Re: Knee in severe pain, no explanation
Post by: knee always hurts on November 15, 2010, 05:37:47 PM
Still no word on the insurance. I might call later today, but I doubt that it will speed things up any.

I definitely felt a lot better when I was able to move around more, and it doesn't seem likely that the Lyme bacteria would relent simply because I was moving. So perhaps it is just an unfortunate constellation of symptoms. But I don't think my situation is going to be changing much any time soon. The last couple of days, other than the pains, I felt completely normal. No depression, no anxiety, nothing. I went to sleep, and woke up at some point in the middle of the night suddenly with what I can only describe as a mini panic attack. For some reason, my heart rate didn't increase, but I still got the tightness in the chest and sudden numbness in the extremities. They lasted about 10-15 seconds and repeated probably another 3 or 4 times before I was able to fall asleep again. I really think they are triggered by the pain in my knee. I've been trying to bear a little bit of weight on my knee while still using crutches, figuring that it is better for the joint than nothing. But my knee doesn't seem to tolerate it at all. I haven't had much in the way of sharp pains, but my knee now feels very irritated. That irritated feeling provokes a fear response for some reason. Now, whether I'm more vulnerable to that happening as a result of something else, or it is just the repeated blows of the last few months finally getting to me, I don't know. I'll probably raise the LD theory with a doctor when I get to that point, but this might be something I'll just have to manage for a while.
Title: Re: Knee in severe pain, no explanation
Post by: kscope09 on November 15, 2010, 05:59:29 PM
If you havnt had an mri scan then you must go and get one.  The longer you wait the more muscle you will loose and the worse the knee will get.  If you rest it too much and don't move around you are at risk of worse things than atrophy.  I'm tlaking about RSD and you really don't want RSD I can't stress that enough.  I've had scares about it before and from my research it is one of the worst things anyone could have wrong with them.  If youu rest too much you put yourself at risk.  So see a knee scpecialist and get an mri, do this before you have a scope.  If you are lucky a scope might not be necessary.

All the best.
Title: Re: Knee in severe pain, no explanation
Post by: knee always hurts on November 22, 2010, 12:34:57 AM
Well, as if it couldn't get any worse, it looks like in my zeal to get that insurance application mailed out, I neglected something. They wanted a birth certificate! So now I have to wait even longer! Ahhhhhhhhhhh! What was finally a certainty, I thought, is up in the air again. I'm planning on hand delivering it tomorrow, but I'm sure they won't be in any rush to get it processed. Ack!
Title: Re: Knee in severe pain, no explanation
Post by: knee always hurts on November 23, 2010, 01:53:45 AM
I got a letter in the mail today that says that I am now covered by insurance! This is great news but I still need to take care of the birth certificate situation. Fortunately I can begin to make the appointments to get me where I need to go. Now the only concern is if I will be able to see the doctor that I want. We'll see.
Title: Re: Knee in severe pain, no explanation
Post by: smillie on November 23, 2010, 09:15:32 PM
I've been catching up on your thread this afternoon. Congrats on getting your insurance! Hopefully you can get some resolution or at least a better understanding of your situation. A few posts back you were describing that panic feeling but not the full blown panic attack. I'm wondering if I can describe what you are talking about. I get a pain response that may be what you are talking about. It's almost like my throat and chest and stomach tighten up for just a bit like a contraction and I feel kind of quivery for a second as it releases. It's really hard to describe. It's definitely a response to pain and sometimes I don't even realize the level of pain that is there until I react to it. I know I'm describing it badly because it's really hard to describe. Does this sound anything like what you were feeling? I only mention it because I wanted to reassure you that it's just a pain response as far as I know and something I have experienced often. The best way I've found to deal with it is to lie as comfortably as possible, close my eyes, slow my breathing, and try to relax all of my muscles. It's a relaxation method I learned in child birth preparation and it really does help when dealing with pain and pain reactions. I do my best to just look like I'm asleep and enter a state of relaxation. It helps the pain subside and calms me down considerably.

Good luck and let us know what you find out!
Title: Re: Knee in severe pain, no explanation
Post by: knee always hurts on December 05, 2010, 12:15:28 AM
I have been under the impression that I was supposed to receive some sort of information pamphlet describing how I would go about the selection a qualified doctor under this insurance plan, and I still haven't received it. So I still haven't made an appointment. However, I'm fortunate that the problem finally seems to have calmed down. I've been walking, albeit quite slowly, for the last few days. My knees are still quite sore, but I haven't had any sharp pains, at least not yet. So I've been trying to strengthen some of my muscles since it felt like my leg was caving into the side when I first got off crutches, I was so weak! In any case, my situation is a good deal less urgent than it was a few weeks ago. Whatever could have caused that to happen, in the absence of some acute trauma (which there wasn't), I'll never know.

The plan now is to see how I respond to a gradual increase in activity over the next few weeks. Hopefully by then I can make an appointment to the doctor if I need to. I fully expect that I'll probably have to. It still feels like there is something catching underneath my knee cap. I obviously wouldn't care if it doesn't hurt at all, but given the last several months, it seems unlikely that it won't cause any further problems.
Title: Re: Knee in severe pain, no explanation
Post by: marksalot on December 05, 2010, 05:00:25 AM
Just wanted to throw my story in here in case this helps.  I'm by no means recovered, but I have found a routine that I'm satisfied with so far.

Here's where I was at ~2 months ago: Knee pain when my leg is relaxed while sitting or lying down.  Mostly the medial side unless I'm in an odd position that puts pressure on the other side.  There was also pain and heat coming from below the kneecap (fat pad area) on some days.  Doing any exercise makes it feel "better" vaguely, but it also feels like I'm making it more sore at the same time.  So I go to two doctors who don't really have much advice other than to increase my activity with it.

So out of options, and lacking any sort of diagnosis or explanation, I really start trying to exercise.  I've just decided that this must just be one of those things that doctor's can't really explain.  Anything that makes it feel sore is OK, as long as it doesn't make it feel like there's catching/grinding/friction in the knee.  I'm doing inner/outer leg machines and leg curls at the gym.  (No extensions.)  Also found a recumbent exercise bike that seems OK.  (I still can't do most bikes because they don't feel good at all, but this specific one seems helpful.)  I'm still doing a lot of the physical therapy exercises, but I don't do any of them that don't make it feel good somehow, or that seem to be more painful than the others.  For all of these exercises, form seems to be important to whether it feels OK or not.  It's tough to nail down, but it generallly seems to help to keep my knees pointed out, feet slightly out, and try to emphasize using my outer leg muscles.  My hands are on my legs a lot to feel what my muscles are doing.  (Especially the outer quads and hamstrings.)

After about a month I start adding a squat machine in to my routine.  Low weight at first, and I adjust everything to make my knee bend as little as possible.  But this also seems to feel OK.  I'm glad I added this, because this seems to be the only thing I'm making progress at anymore.  This and the bike.  I still do the other exercises, but I'm not really increasing anything with anything else.  The pain wasn't too bad today during the day, but I still can't sleep with a straight leg.  And it still varies a lot from day to day.  But one thing that seems to help is to always exercise every day, no matter how sore it is.  (I do take one day off each week though.)

Oh, and at some point in this period I also decide to stop limping, stop using knee braces (unless it really hurts), and stop using anti-inflammatories.

Your condition could be completely different, and obviously I don't know that I'm even doing the right thing for myself yet.  (I won't know that until the pain goes away.) But maybe something here willl be helpful.
Title: Re: Knee in severe pain, no explanation
Post by: knee always hurts on December 05, 2010, 07:23:53 AM
Well, thanks for the suggestions but I have to say that I've just been flummoxed by my knees over the last couple of months. I've tried just about every combination of exercises imaginable and they haven't responded favorably. I'm going to make one last attempt over the next two or three weeks but then it's the cortisone shot/surgery route.
Title: Re: Knee in severe pain, no explanation
Post by: knee always hurts on December 09, 2010, 02:50:10 AM
Well, after a few good days my knee started acting up again and the familiar feeling of irritation and pain is returning. This time, figuring that prudence is the better part of valor, I'm going on crutches to preempt the agony that I was in last month. I guess my knee really never is going to improve without some sort of invasive treatment. There is a feeling of something popping or snapping in my knee in that location, so obviously something is horribly wrong there. Finding out what exactly will have to wait for a while because I never received all the information I required for my insurance. But when it's sorted out I'll be off to the doctor immediately.

The good news is that the psychological symptoms have almost completely subsided over the last couple of weeks. I'm certainly "stressed out", but it is a familiar stress and not severe anxiety or panic attacks. All of that was honestly a great deal more problematic for me than mere pain. So I'm faring better for now.
Title: Re: Knee in severe pain, no explanation
Post by: knee always hurts on January 04, 2011, 09:53:18 PM
I had finally gotten the insurance last week, but apparently the doctor was out for the holidays. So this week, I called to make an appointment.

I told the secretary my situation, and asked if it would be a problem if there was a specific doctor I wanted a referral to. I was told it will not be a problem. Amazingly, I got an appointment for Thursday! So, finally I'll see a doctor in a couple of days. If I can get that referral without any trouble, perhaps I'll be getting an MRI before the end of the month. At last, some unambiguously good news!  ;D
Title: Re: Knee in severe pain, no explanation
Post by: smillie on January 06, 2011, 03:28:02 PM
I know it's not the case in other countries, but in the US you can actually expect to get appointments and procedures pretty quickly for the most part. I'm sure there are some doctors out there who are in high demand and take longer to get in to see, but for the most part, you can expect to get in within a week or so. I would guess they could get you on the MRI schedule very quickly if that is what you need. Just remember not to pin all of your hopes on an MRI. It doesn't always show that much. I'm glad you're on your way!
Title: Re: Knee in severe pain, no explanation
Post by: knee always hurts on January 06, 2011, 07:40:27 PM
What a difference another pair of eyes and ears can make. The new doctor today was completely different from my prior experiences. For the first time, I was given a comprehensive evaluation. Whereas the other doctors seemed pressed for time, and were trying to push me out the door, this doctor listened to everything I had to say, and went through a number of possibilities.

The highlights:

He thinks that it is likely that I have chondromalacia. However, when I asked why the pain would be so severe, he didn't really have an answer.

He looked at the alignment of my bones, and said that it does appear that I am knock-kneed. I asked if the misalignment meant that I would likely have to have some kind of derotational surgery, and he said that it is possible, but it is premature to think about that yet. He did say that the necessity of some kind of surgery is very likely.

I asked about the possibility of some other scans, like an MRI, and he said that he wants to review the X-rays first, but he actually had me schedule an appointment for tomorrow as well where we will further discuss my options.

I think I saw this week on the forum some discussion of the degree of the angle of rotation where a TTT or derotational osteotomy might be advisable. I would certainly want to make sure that I fit within the medical guidelines for that procedure before seriously considering it, and I would want to get a second opinion.

He actually said he is going to do some research at home for me! Quite amazing really. It will be interesting to see what he has to say tomorrow.
Title: Re: Knee in severe pain, no explanation
Post by: Vickster on January 06, 2011, 08:58:06 PM
Good to hear that you are finally getting somewhere  :)

I too am slightly knock kneed (increased valgus alignment) and in addition to a nice ~1.5cm2 osteochondral defect on my WB lateral femoral condyle (caused by falling off a bike) filled with fibrocartilage, my latest scope (which was to assess suitability for a MACI) also discovered extensive grade 1-2 softening (so chondromalacia) on the lateral tibia in addition to the grade III on my patella that was tidied during my first scope 10 months earlier.  After the scope, the OS couched the possibility of an osteotomy to shift the weight to my 'pristine' medial compartment. 

No mention of derotational surgery, I don't think genu valgus is always accompanied by rotational issues (never been any mention in my case).  Will be discussing the next steps with the OS in a few weeks.  My understanding is that a TTT is more for when there is major patella / trochlea wear?  For knock knees and lateral wear a Distal Femoral Osteotomy and for medial wear an HTO.  The osteotomy section in the information hub on here is excellent - have a read :)

I have chronic discomfort, but wouldn't say the pain is unmanageable.  I can cycle ok, can use an XT, but any impact exercise, kneeling, squatting is not really possible.  I also get very stiff sitting for any length of time and find it uncomfortable to lie on that side.

Good luck with getting some answers.
Title: Re: Knee in severe pain, no explanation
Post by: Vickster on January 07, 2011, 10:40:00 PM
How did you get on with the doc today?  Closer to a plan of action?  :)
Title: Re: Knee in severe pain, no explanation
Post by: knee always hurts on January 07, 2011, 11:35:28 PM
Thanks for asking, Vicks.  ;D

Yes, I actually gave a sheet to the doctor with the preferred specialist that I wanted to see, and he said, (Paraphrasing)"Mass General, Havard Medical School professor, I don't think you're going to do much better than that." He's actually calling the doctor to talk about my case and to schedule an appointment for me.

It's difficult to express how great this doctor is. He has all the virtues you would expect in a good doctor. He freely admits when he doesn't know something, listens to what you have to say, and evens wants to hear his patient's input. I think he actually learned something from me today. It was rather funny, he said that some of the things he was telling me might be a bit "old fashioned" since things change so quickly in the medical profession. He had told me yesterday that getting an osteotomy procedure would involve being in a cast for a significant amount of time. So I told him today that they actually have a new procedure that involves a plate that holds everything together rigidly, so that casts are unnecessary now. I think my other doctors would have blown a gasket in a that circumstance (Though I doubt the conversation would have ever gotten to that point), but he actually seemed happy to learn something new.

He said that his only interest is in helping his patient, so that he doesn't have any problem referring me to a specialist. He said that primary care doctors are a bit like "gatekeepers" who help to regulate the flow of traffic in the health care system. For routine things like diabetes management, or asthma, or many infectious diseases, they can take care of you, but in my circumstance, he that that I'm going to need specialized care. So it's on to the next step now. I'll post when I get an appointment date for the specialist.
Title: Re: Knee in severe pain, no explanation
Post by: Snowy on January 08, 2011, 12:05:26 AM
So glad to hear this - sounds like you're finally making some forward progress, even if you don't have any definite answers yet. It's amazing how much difference it makes getting the right medical professional on your case. Your new doc sounds like a godsend.

I wish you the best of luck with the next steps!
Title: Re: Knee in severe pain, no explanation
Post by: knee always hurts on January 18, 2011, 07:59:40 PM
My appointment with the new specialist in Boston is on Friday. As best as I can glean from what I've read, this doctor was one of the pioneers in the field of arthroscopy. Before he developed his techniques, arthroscopy was used primarily as a diagnostic tool rather than for correction of knee pathologies. It seems, if anyone will be able to help me, it is likely to be this new doctor. My hope is that he'll either be able to correct the problem, or refer me to someone who can if arthroscopy is inappropriate for my condition. It seems as if I've gone from pretty rotten doctors to the best of the best. Wishing myself luck for Friday...
Title: Re: Knee in severe pain, no explanation
Post by: anthonychia on January 19, 2011, 04:29:20 PM
Hi, I just read through all your posts and I was wondering what type of doctor was he? the one that really listened to what you said? a GP from a hospital or a surgeon? My knee symptoms are quite similar to yours (discomfort below the kneecap for at least a year and a half), but I think I haven't reach that critical stage yet. I quit doing sports for more than a year and my muscles are degenerating. It will be great if I can find out what my problem is before it gets worse and get it fix asap.

I was first diagnosed (wrongly) with patellar tendonosis then fat pad impingement and now my MRI shows grade 2 MCL sprain. I have seen more than 5 physio, 1 orthopaedic, acupunture and tried all different kind of exercises. They helped at first but then the situation gets worse and now i am trying my best not to cause my knee to deteriorate. Few months ago, I started having loud cracking sound when I bend and straight my knee. ten times louder than when I crack my finger. Basically, I have no clue what is happening to my knee because all doctors have different diagnosis and this is really frustrating.

I really hope everything will turn out fine for you. And maybe you can provide me with some help with what kind of doctor/specialist I should seek help from and what should I mention to them so that they can treat me seriously. Should I get a CT scan?

Thank you.
Title: Re: Knee in severe pain, no explanation
Post by: knee always hurts on January 19, 2011, 05:49:19 PM
Hey anthonychia,

I'm honestly not sure about the background of my doctor, but the founder of the clinic was involved in directing a pretty major medical center years ago. I think his intention was to found a family practice that was based on a philosophy of providing the best possible treatment for the patient rather than simply rushing the patient through the visit to maximize profits. It's really hit or miss with finding a good doctor, but I think a bare minimum standard must be that the doctor is willing the hear the patient out. If they are not interested in that, your first visit should be the last one.

With these sorts of intractable knee problems, that may not hew to conventional diagnostic criteria, what you really need is someone who is willing to take a deeper look at the problem. Think House, M.D. (Though one would hope with a friendlier disposition).

If you're able to, I think the ideal doctor to seek out would be one with research credentials, and if possible specializes in the patello-femoral joint. The interesting thing about research doctors is that, often, contrary to your expectations, they might actually give you more time than a non-research doctor. And that is because they are actually trying to contribute to the furthering of their field. They're actually quite interested in a strange and unsolvable cases, whereas a non-research doctor might just find you to be a waste of their time. They don't know what your problem is, and spending more time on it will actually cost them money. I hate to sound cynical, but such appears to be reality, at least as far as my experience and knowledge of the medical system goes.

My new doctor is actually a Harvard Professor who is extensively published in medical journals, so my expectation is that if he cannot find an easy solution to my problem, he will likely still be interested in resolving my case. The most frightening prospect is that there may simply be no known treatment for a what I have. It's possible that no doctor, not even the best, will be able to treat me. But you owe it to yourself to seek out what will be your best prospect.

I don't know where you live, but you should look for the largest major city near you, find the research hospitals, and see if there are any knee specialists there. It might be quite a burden, but it could also be your best hope. Good luck to you and keep me updated on what you find!
Title: Re: Knee in severe pain, no explanation
Post by: knee always hurts on January 24, 2011, 11:35:14 PM
As it turns out, the appointment was delayed to today as a result of the heavy snowfall on Friday.

When I first went into the doctor's office, he asked me where the pain was located. I explained the history over the last 16 months, and he took a close look at my alignment. He actually said that my alignment is fine. He then manipulated my patella and said that it appears that I have patellar instability. He then got straight to business without mincing any words (This is the painful part). He said that there is no surgical procedure that would benefit me (This is similar to what rbcyclist was told, but apparently my own condition is far worse than his was). I asked if I should get an MRI or other scan. He said that MRIs are overrated and would be unlikely to show anything useful. He also said that there would be no reason to get any other scan.

He then told me that I should go back to my primary care doctor and get an appointment to see a rheumatologist and pain management specialist. He said that the problem is now a problem of chronic pain and is not something that can be treated by an orthopedic specialist. Does this remind anyone of highroller? I don't expect any different results, either.

He did prescribe me a specialized brace, but is this really going to make any difference? I'll find out in the next few days. For now, though, I need to figure out if this makes any sense. Has anyone actually been in a similar situation to mine and gotten relief from a rheumatologist? I should also note that my doctor is a general knee specialist, and does not specifically specialize in the patello-femoral joint. But is it possible that a research doctor, a Harvard professor, could be so woefully misinformed on the current range of treatments that another doctor might be aware of?

Is there any sense in attempting to seek further treatment, or is it just time to give up now and accept a life of disability and chronic pain? I suppose my hope that this doctor would offer anything new was more wishful thinking than anything, given how the medical literature is almost devoid of any coherent treatment options for this sort of condition. It's was a hope that maybe there was a secret stash of special Harvard research that this doctor had access to, but apparently not.

I was saying to myself the other day, half-jokingly, that the doctor was going to say that there is no treatment, but that he'd hack my knee off if I wanted. He did actually mention patellectomy as a last resort. So there is a surgical option after all!

I know that at least a couple of people were watching this thread, hoping that I might find out something that could apply to their own case. Well, there you go. I think my father said it best: When I told him what the doctor said, he replied, "If there was a treatment for everything, we'd all live forever." Now, if you don't mind your patella being hacked off, you might get somewhere.

So, does anyone have any thoughts corroborating or contradicting what I've heard today?  :-\
Title: Re: Knee in severe pain, no explanation
Post by: amoler on January 25, 2011, 01:19:19 PM
The Harvard guy sounds a little stuck on his importance. Research experience doesn't guarantee good results or cooperation. (Lord knows I ran into some monumental egos in the couple of years I did research for a med school) Sounds like it he basically told you to suck it up and learn to live with the pain. I think I'd keep hunting. It took me 5 tries to find a doc to solve my migraine issues. -I know, diff. problem, but the premise is the same - to find someone who willing to try various things until you find a solution or at least some control.
Title: Re: Knee in severe pain, no explanation
Post by: knee always hurts on January 25, 2011, 07:47:33 PM
Maybe you're right amoler. I'm having nightmare visions of my kneecaps getting hacked off. Thanks doc.

I certainly don't want to go into surgery if it's only a false hope though. From everything I've ever read, both here on the forums and through my own research, surgery is only really efficacious in very specific circumstances. Otherwise, it is some combination of PT and slow rehabilitation that is going to be helpful. Beyond that, it's tough luck.

I certainly don't think that Pain Management is going to be a route I want to take, being permanently on some sort of harsh pain medication. In any case, I don't think there is any pain relief strong enough to allow me to walk, unless I somehow manage to improve the condition of my knee. On the other hand, when I'm not walking, I don't really need pain medication at all. I take an occasional acetaminophen. I'm always sore, but I can manage it.

From everything I've experienced, I certainly believe that the origin of my pain is mechanical. Thus, I don't suspect that a rheumatologist is going to help me, but I just might pursue it anyway, if only to rule it out.

The only thing that might be worth my time is to seek out a PF specialist. Chances are, they'll just want me to do more PT. Which might be the best thing, but my knee might not be able to withstand even light PT.
Title: Re: Knee in severe pain, no explanation
Post by: smillie on January 25, 2011, 10:24:35 PM
Did he even do x-rays? What did they show?
Title: Re: Knee in severe pain, no explanation
Post by: knee always hurts on January 26, 2011, 01:28:02 AM
No, he didn't. He asked if x-rays were taken by the other doctors I'd seen, and I replied that they were. He asked if they came back clean, and I said that the doctors never mentioned any problem with them. He didn't say anything else about it.

Do you think that it's possible to ascertain if there are alignment problems without an x-ray? He seemed pretty confident.

He made it pretty clear that there wasn't any reason for me to ever come in again. Honestly, given the glowing reviews that he got from other people I know, and his credentials, I was a little surprised with the way he treated me. But, if there really isn't anything he can do, then how else could he react?
Title: Re: Knee in severe pain, no explanation
Post by: smillie on January 26, 2011, 03:02:49 AM
Just because he's great at what he does, it doesn't mean he is great at what you need. I have always had x-rays to diagnose my tracking problems. I don't know if it's possible to reliably diagnose it without them or not. But I've said it before...just as you would seek a second opinion if he told you that you needed a big surgery, it's probably a good idea to get a second opinion on a "do nothing" verdict. See if you can find a patella guy this time.
Title: Re: Knee in severe pain, no explanation
Post by: knee always hurts on January 26, 2011, 06:02:26 AM
Darn, this guy is looking pretty good:

Too bad he is in NYC rather than Boston.
Title: Re: Knee in severe pain, no explanation
Post by: kscope09 on January 26, 2011, 01:47:41 PM
it's too bad that he wouldn't do anything.  I don't know what a rheumatologist or pain management specialist is going to do about patella instability.  I'd would have expected him to be gun-ho for surgery and wanting to do a lateral release.  Be carefl with lateral releases, that is what they do when they can't think of anything else and they seem to be more touble than they're worth.

I'm surprised he said you ahd patella instabilitysince I've never read anything of yours that say's you've had silocations or subluxations and it your alignment is OK then what on earth can be causing patella instability.  It doesn't make sense and I would definatly get a second opinion.  Remember also, you are paying for your treatment, so demand proper diagnostics.
Title: Re: Knee in severe pain, no explanation
Post by: Lottiefox on January 26, 2011, 06:01:57 PM
Oh dear.

This guy has one saving grace - he didn't suggest you had a "diagnostic scope, clean up and lateral release". Thank the Lord!!  :D

I find it hard to comprehend he can categorically discount alignment/tracking issues without scans. The final OS I saw told me my knee looked "straight" in terms of the joint, but that wouldn't tell him how the kneecap behaved in varying degrees of flexion with and without quads tensing. For this I had a CT scan. lo and behold there were irregularities. Nothing I have chosen to remedy surgically but it was good to get some diagnoses. I also have Grde3-4 cartilage damage, evidenced by T2 MRI scans last February. I'm doing everything to avoid surgery as I don't believe at age 41 it would do much - my knees don't track properly, so be it. When they wear out I will go under the knife..

A patellectomy is rarely done now. My Aunt had one done in 1985. She had no kneecap cartilage and crystals forming that were shearing off. PFJRs didn't exist then. She spent 3 months in a cast and has never had proper leg function since - OK, she walks but only for about 20 minutes and thats her done. She then needed a TKR 10 years ago for the remaining compartments. I don't think removing your kneecaps will be mooted!

You are younger than me with greater limitations. I am controlled by PT, meds, ice, avoiding daft things like spinning classes and snow clearing.....its OK. Not perfect but OK.

I would be epxloring a PF specialist. A rheumy may help, a pain management doc will give you meds and psosibly other strategies. If they are enlightended and can look at things like dry needling for example it can be worth trying....

Don't give up,

Title: Re: Knee in severe pain, no explanation
Post by: kscope09 on January 26, 2011, 07:41:25 PM
If anyoen suggested a lateral release for me I'd run a mile (not actually of course), they are nothign but trouble and seem to ruin more peopel than they help.

Oain management is a good idea but you'd only be treating the symptoms and woudn't be addressing the real problem.

A atella femoral doc is what you need.
Title: Re: Knee in severe pain, no explanation
Post by: knee always hurts on January 26, 2011, 08:15:54 PM
Well, looking more closely at this doctor it is clear that he mostly, if not exclusively does non-PF stuff. I should have listened to the advice given many times on this forum and gone straight to a PF specialist.

Can you imagine it! A patellectomy. That is the only treatment option I was given. Does that make any sense? He is in his early 70s I think, but you would think he would keep up with the latest literature on such things. I can understand that he doesn't want to deal with PF issues if he mostly focuses on meniscus tears and ACL reconstruction, but why in the world wouldn't he have a PF specialist that he can refer people to? He told me not to bother going to any other knee specialist, or getting any scans.

If I did actually see a PF specialist, would it make any sense to have a "diagnostic scope" (sans lateral release of course!)? Or is that always to be avoided? Assuming that the only problem is patellar instability, is there anything that can be done or is it the end of the road? As I've mentioned many times, I never had any knee problems in my life before this all started in '09 after my foot injury. It just started out of the blue. That leads me to believe that there was a problem with a serious muscular imbalance (somehow caused in the few days that I was functionally limited by the sprain) rather than any congenital misalignment. But now that the damage is already caused, there seems to be no going back. That's why I was hoping that some sort of surgery could be a "fix". But it appears that with a lot of these PF problems there really isn't anything to fix.

I'm not even sure if I have chondral damage. Several doctors, including the professor this week, insisted that I do, but how is that possible? I know for sure that I didn't have it prior to last summer. Doesn't it take years to progress? How could I go from having a perfectly healthy knee to having one so ravaged by chondromalacia that I'm in the state that I'm in now, in only something like 3 or 4 months? And I was walking minimally during that time, and there was no hard fall or anything onto my kneecap. I know back in May last year, that I was able to do single leg squats pretty low with no pain or soreness whatsoever in the area that is now bothering me. If it is cartilage damage, it seems that it must have been caused by something unusual, and my only thought is that it might have been tissues in my knee that were severely inflamed for a couple of months over the summer. That tissue perhaps damaged the cartilage. I've never read this anywhere as a cause for these sorts of problems, but nothing else makes sense to me. Either that, or it isn't chondromalacia at all, but something else which was irritated by that same tissue.

If it is some kind of strange circumstance where something is badly irritated in my knee, couldn't that tissue be removed? And if it is a pretty bad chondral lesion under my knee cap, wouldn't I be a pretty good candidate to have some sort of cartilage replacement surgery? All I want is for a specialist somewhere to actually sit down for 20 minutes and listen to me explain what has happened over the last year and a half. So far, only my new GP has done that, but he isn't a knee specialist. If I can't get at least that, I don't suspect that I'm going to get anywhere. I at least don't want to be told that I'm a hopeless case before having other options explored.
Title: Re: Knee in severe pain, no explanation
Post by: knee always hurts on January 27, 2011, 12:03:52 AM
I've been continuing to read Dr Ronald Grelsamer's kneeguru page on PF pain (linked a few posts back) and this caught my eye:

"Part 5 was only a brief overview of the history and examination. What I am hoping you have noticed is that it is not possible to assess the knee without a proper history. Nor is a cursory look at the knee the sign of a competent doctor.

If nothing else, I hope at least you take away with you an overview of what you should be expecting from your doctor!"

I think the doctor looked at my knee for all of 20 seconds! How do I always get so lucky? I go to the chief of surgery at the 3rd ranked orthopedic hospital in the US, and I get this kind of garbage treatment? If that's the case, how does anyone get competent care? I think this fellow is just against any and all surgery for PF problems, so he doesn't think he needs to bother with a comprehensive evaluation. Is he in any way warranted in that belief? Dr. Grelsamer is obviously in disagreement. Who is correct?
Title: Re: Knee in severe pain, no explanation
Post by: SqshPlr8 on January 27, 2011, 10:25:24 PM
Hey KAH,

So sorry about the uneventful visit with the doc!  Keep looking for a PF specialist and keep trying new things with your own rehab. 

You might also want to look into clinical studies.  Your treatment is paid-for -- including an examination, pre-screen MRI and other images, perhaps--which may get you going in the right direction, regardless of whether you continue with the study. For example, there was an ad on the kneeguru site which is testing a new cartilage grafting system:

I think they have a site in Peabody, MA.

I have no idea if this study (or any other study for that matter) is worth anything, but you would at least get another (and hopefully more careful!) set of eyes to look at your knees -- not to mention the free care/images.
Title: Re: Knee in severe pain, no explanation
Post by: knee always hurts on January 28, 2011, 12:09:37 AM
Thank you for posting that Sqsh! Interestingly, I was just reading about the newer generation of cartilage replacement therapies, as there are some in Europe that are already approved and used regularly, but unfortunately have not be approved by the FDA in this country. One of the things I found interesting about this newer generation is that in some cases the surgeries are entirely arthroscopic. It appears that that is the case with the CAIS procedure as well. I'll definitely check that out, as if cartilage replacement does make sense for me, it would be greatly preferable for it to be arthroscopic than an open arthrotomy!
Title: Re: Knee in severe pain, no explanation
Post by: knee always hurts on January 28, 2011, 12:19:51 AM
That was a simple process! They should be contacting me at some point in the next few days. As you said, whether or not I choose to go through with it, at least I can get an evaluation and perhaps some answers. I'll let you know when they contact me.
Title: Re: Knee in severe pain, no explanation
Post by: cdubb on January 28, 2011, 04:14:49 AM
If you're in Boston area (which if I read correctly you are) and think you may be a candidate for cartilage restoration procedures and/or potential realignment procedures, why don't you go see Dr. Minas or Dr. Gomoll?  They're leaders in the country for those procedures?
Title: Re: Knee in severe pain, no explanation
Post by: knee always hurts on January 28, 2011, 07:58:31 PM
Certainly, I would consider it. Honestly, the idea of open knee surgery with a 6 inch incision just freaks me out a bit. But if it's necessary to get my life back, I'll do it.

My GP called this afternoon, and inquired as to how I was doing. I told him about the incident with the new doctor, and he said that is unfortunate. I told him about the trial that I signed up for, and he said that might be something that makes sense and to get back to him if I need anything. A real swell guy, he is.

I also started doing the Egoscue E-cises again that I've mentioned in the past. Amazingly, they seem to be helping quite a bit. I actually walked cumulatively for about an hour this morning. That's quite amazing since a very minimal amount of walking was pure agony for me not too long ago. No it wasn't completely pain free, and my knees are quite sore right now. But the fact that I could do it is remarkable. One of the central ideas of the Egoscue approach is that joints can be brought back to health with motion under the right circumstances. He also believes that even cartilage can be rehabilitated. So in some respects, it is similar to rbcyclist's approach. I really believe that my severe inflammation over the summer caused extensive cartilage damage, and it's probably so-called "kissing lesions". As far as I understand it, that is the worst case scenario for cartilage replacement techniques (kissing lesions under the patella). If any physical therapy approach is going to work for me, I think that it is contingent upon cartilage actually being able to regenerate. So I'm hoping that those theories are correct. Since at least preliminarily, it seems to be helping, I'll stick with it. One of the things about the Egoscue approach is that it really requires you to do the routines every day. It will be interesting to see if I keep making progress, or if my current state today is about as good as it's going to get.
Title: Re: Knee in severe pain, no explanation
Post by: knee always hurts on January 29, 2011, 12:48:25 AM
Well, this is unexpected.

I probably walked more today than at any point in the last 6 months. No, actually probably more than all the days in the last 6 months combined. I was expecting some benefit, but this is really amazing. My muscles are so sore right now, it is ridiculous. But my knee doesn't really hurt when I walk. I'm actually starting to walk pretty fast. And it seems the more I walk, the less it hurts. My knee is only mildly sore right now. Let me say it again, this is amazing. My foot and ankle are actually really starting to hurt because I am walking so much and my calf in my left leg is still so weak. But my knee doesn't hurt when I walk. I don't know if this is going to "cure" me in the long run, but I'm a happy fellow right now!  ;D
Title: Re: Knee in severe pain, no explanation
Post by: knee always hurts on January 29, 2011, 01:00:42 AM
I don't want to exaggerate, because I'm still getting some pains when I walk, but mostly 1-3 out of 10 on a pain scale. Nothing that is stopping me. Now my glutes and hip flexors are really sore, which is a good thing. Those muscles should be driving locomotion, and now they are. I hope I'm not walking too much, as I still have lots of muscular imbalances and what must still be a very injured knee. But I just can't stop, it has been so long...  :'(
Title: Re: Knee in severe pain, no explanation
Post by: SqshPlr8 on January 29, 2011, 04:17:27 AM
Fantastic!  But, yes, take it easy.  I had a similar experience about a month ago.  Walked a lot more, which made me feel better, which made me walk more and so on.  Giddy with unbridled joy.  After watching 127 Hours (a movie I highly recommend to anyone going through his/her own set of seemingly endless troubles; extraordinarily uplifting), I was on Cloud 9.99999...

At the end of the week, however, the bases of my IT bands were ridiculously sore, perhaps impinged, and so I had to cool off.  Besides that, though, more moving -- particularly long walking, something I had thought was bad and had experienced as painful -- seems to help.  Of course, I have to keep it within reason and experience.  Check that.  Just experience. Pure Reason? Pure Logic? Hahaha! 

Given the wide range and severity of pain and my relatively young age, I wonder if all of this crap is the result of semi-impinged or -compressed soft tissue, causing a vicious cycle of hyper-innervation and -sensitization, which can be partly alleviated by, well, moving.  At the very least, my left knee twisting/kneecap subluxation started this whole thing.  As you alluded to in your posts, I can only hope the inflammation of the soft tissue didn't itself do any serious damage to the more inert and stubborn, though healable, cartilage.

Well, then.  There I go theorizing immediately after I openly chide and mock Reason and Logic! Sometimes I just have to heed the words of the dervish:  Shut my mouth/reflexive theorizing, and cultivate my garden/knees!
Title: Re: Knee in severe pain, no explanation
Post by: knee always hurts on January 29, 2011, 05:43:31 AM
Oh my goodness, my feet hurt like all heck! And I just know my glutes are going to kill like no tomorrow tomorrow!

I think I walked for 5 hours today. So yes I overdid it. My knees are fine, but I'm going to kill tomorrow. 4 hours would have been good. But I did 5. My knees actually continued to hurt less with time. But I could've done less.

I think the thing-in-itself is ultimately unknowable to us. I like theory as much as the next guy, but no theory encompasses all conceivable variables. And even if it does, it is merely a model by which we attempt to comprehend the otherwise ineffable. But you know, I don't need any theory right now to know that I feel better than I have in a long, long time! Reason is the internal logic of the mind. But of knees, it knows nothing. So let us mock reason and logic together!
Title: Re: Knee in severe pain, no explanation
Post by: SqshPlr8 on January 29, 2011, 02:12:11 PM

I completely agree.  No theory is perfect, but they can be very helpful, at times completely indispensable, even if they prove "wrong" in the end. I don't think automotive engineers take relativity into account. Mr. Newton does a fine enough job!

Either way, you can't argue with feeling good!  Keep up the good vibes!
Title: Re: Knee in severe pain, no explanation
Post by: knee always hurts on January 29, 2011, 10:30:46 PM
Update for today:

I no longer have any pain while walking. Both of my knees are still somewhat sore, though less so than before. I've even been walking faster than 4 miles per hour. Still no pain. I've already walked for over 4 hours today.

The lateral catching and popping that I experienced for almost 7 months now in my right knee is completely gone. Last week, when I tried to walk up a step with my right leg, the whole knee cap would pop. Now, I just hear a tiny click.

The popping in the superolateral corner of my left knee has significantly diminished, though it is still there. I tried to do a few single leg squats today, but there was still significant pain. Still, being unlimited in my ability to walk makes me feel able bodied again. I hope to eventually be able to squat, but for now this is far more than I ever could have imagined.

The thing that gets me is that I had that darn book on my bookshelf throughout all of this suffering. Why didn't I try it sooner? Sometimes we humans do foolish things, both through omission and commission. I've done both in the last few months, to my eternal regret. I can't get those months of my life back, but things are looking better every day.
Title: Re: Knee in severe pain, no explanation
Post by: knee always hurts on January 29, 2011, 11:37:23 PM
If anyone is reading this post, you are probably intrigued, but may be skeptical. Well, the only way you can find out is if you try it yourself. You can buy the book here, which I really do recommend:

But, I just came across a site which has the exercise menus in a pdf format:

Now, as you'll notice, there is an internal knees and an external knees pdf. I suppose someone in an Egoscue clinic could probably tell you which one to do, but it never really made much sense to me. So I just do both. Now, it could take up to 4 hours a day to do both menus, but, given that it could permanently resolve at least some of the issues that people on this forum present with, I think it is worth it. There are some specific things that you should be aware of if you are going to pursue these exercises. If anyone is interested, I'll elaborate.

There are also pdfs for other joints as well:

Go to the drop down menu at the top and select the joint.
Title: Re: Knee in severe pain, no explanation
Post by: soccer15 on January 30, 2011, 01:52:54 AM
I'm soo sorry...But I have the SAME EXACT PROBLEM OMG I feel that everyone thought I was making it all up and they thought i was crazy and just exaggerating all the pain. But I finally found someone with the same problem. I've been resting for 3 months now and I have to start PT does it help at all? If it hurts what makes it hurt?
Title: Re: Knee in severe pain, no explanation
Post by: knee always hurts on January 30, 2011, 05:06:35 AM

Read my most recent post, I've made something of a "breakthrough" in the last few days. I can tell you, that at least for me, conventional PT really didn't help.

Just to give a little evening update as well, the soreness in my right knee is actually increasing quite a bit. I think that the five hour walks might have been a bit much, as nice as they were. I wasn't in any pain while walking, but I am feeling it now. It's interesting that the CM knee really feels fine, but the PFPS in my right knee is flaring up. But, if I've learned anything over the past few months, it does really require "relative rest". Hopefully, I'll still be able to walk a decent amount, but I suspect that I'll have to scale back my ambitions if I want to restore the homeostatic balance of my knee (a la Dr. Dye). Darn pinched synovium.  :-\
Title: Re: Knee in severe pain, no explanation
Post by: knee always hurts on February 03, 2011, 08:42:46 PM
I'd suggest that everyone read Paul Ingraham's summary of brilliant new research discovering just why we're in so much pain. No, you won't feel any better after reading it, but it just might tickle your intellect. As it turns out, a lot of the pain we experience is completely pointless. But we already knew that, didn't we?

It's time to stop blaming your poor, hapless knees. Awful little neutrophil @#$%!
Title: Re: Knee in severe pain, no explanation
Post by: knee always hurts on February 03, 2011, 11:51:18 PM
This is an interesting post from almost 8 years ago on the kneeguru:

That fellow sounds like he had a strikingly similar snapping sensation (SSSS) to what I have, though I also have some snapping extending to underneath the patella. It's too bad that most people never post a follow up telling how they made out. I'm almost tempted to send off an e-mail to that address, but what's the chance that he'll still be using that one?

In light of the neutrophil driven vicious cycle afflicting my knee, and also SqshPlr8's successful cortisone shot, I'm starting to wonder if an injection could be beneficial for me. There is definitely some sort of tissue snapping in there, and if it could just calm down, and therefore slim down (And therefore calm down, and so on. Nice virtuous circle.) I might be able to break out of this cycle. I have had some mild success with the new PT program, as those tissues seem to snap a bit less, and I can basically walk without pain now, but I'm fearing that it may not ultimately be enough. I'm just getting tired of this continuous dull ache in my knee which has barely changed in 7 months now. I think it's worth continuing my current approach for another month or so, but if there is no change at all I'm hoping for another possibility. I wonder how probable a symptomatic lateral or suprapatellar plica would be in my case? I know these are rarely affected, but I'm at a loss for any other explanation.

Would it make any sense attempting to get a diagnosis for plica syndrome, or even just seeking out a cortisone shot for more general "anterior knee pain"? I know the literature on the use of these shots for AKP is rather sparse, and that cortisone shots can sometimes be harmful, but one shot seems unlikely to cause too much trouble and just might cure me. Is it worth a try?
Title: Re: Knee in severe pain, no explanation
Post by: knee always hurts on February 09, 2011, 10:18:57 PM
I got a call from the FDA trial today, and I answered some questions, and the fellow said that I probably qualify. I'm actually leaning against doing surgery right now, as a result of the preliminary success of the new PT program that I'm on, and that it's a randomized trial with a 50/50 chance that it'll be a microfracture rather than the new cartilage transplant procedure. The microfracture leads to fibrocartilage, which is not at all the same as the normal hyaline cartilage, and is also a contraindication for future cartilage transplantation, which is a rapidly developing field, if it fails (For example, ACI is 3x as likely to fail after microfracture). On the other hand, I was assured that at no point am I required to go through with the surgery itself, and it might be worth it just to get some scans done, and have another pair of eyes take a fresh look at my knees.

I've also been doing some research on anti-inflammatory gels, namely Voltaren, and it seems like it might provide some pain relief (sans those nasty gastrointestinal sides effects!) if nothing else. Does anyone have any thoughts as to how beneficial Voltaren might be for chondromalacia/PFPS? I'll call my doctor for a prescription this week if it makes any sense.
Title: Re: Knee in severe pain, no explanation
Post by: smillie on February 09, 2011, 10:40:55 PM
I posted to you in another thread, but I think Voltaren gel is definitely worth a try. You can't take NSAIDs with it--you have to do one or the other. But if they have been hurting your stomach, then this will be a definite relief.
Title: Re: Knee in severe pain, no explanation
Post by: knee always hurts on February 09, 2011, 11:44:02 PM
What you posted on the other thread sounds very much like my situation, so I think I'll give my doctor a call and see what he thinks. Combined with other measures, I think it will be helpful. If you read Paul Ingraham's recent summary of the new pain research, it's quite clear that joint inflammation is completely superfluous, without any benefit whatsoever and the probable cause of further harm. It's fascinating that the gel has the same warnings as the oral nsaids. I bet that it is just because all previous research on ibuprofen has been for oral meds, and without new research on the topical gel, they have to post the same warnings. When the new research is finally published, I bet we'll find that the gel is a far safer alternative.

Thanks for your helpful insights, smillie!
Title: Re: Knee in severe pain, no explanation
Post by: smillie on February 10, 2011, 02:14:43 AM
From what I've heard, the warnings etc. are the same as the oral meds because that is what is in it. They don't have anything specifically for the gel yet. But I can attest that I've tried oral and gel Voltaren. I can't take the oral, but the gel works just fine. I have no idea about the liver warnings, but it seems like that would be lessened too.
Title: Re: Knee in severe pain, no explanation
Post by: knee always hurts on February 10, 2011, 08:18:47 PM
That seems to make sense. I've really wanted to try some anti-inflammatory medications for the past few months, but have been dissuaded as a result of my stomach problems. This will hopefully take care of that.