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monkeymorgan 09-02-2012 10:17 PM

It might get better eventually
 
I began having knee pain 4.5 years ago in my right knee. I had x-rays, MRIs, ultrasound, and lots of physical examinations of my knee. I was 13 at the time. The orthopedic surgeon told me that it was common for teen girls to have knee pain and that I would out grow it by the time I was 16. Then 6 months later I got a nasty surprise. My left knee decided to join the fun. 7 months later I began physical therapy. I was told I had flat feet and got custom made orthotics. After 3 months of therapy twice a week I was told,"Sorry, there is nothing more we can do for you," by the therapist. My pain had gotten worse but I was learning to adjust. I was sent to a new orthopedic surgeon. He told me to just wait it out since it had been a year since it began it should stop soon. Wrong he was. After two years of no treatment I went back to see the same doctor I was almost 16 and my pain had gotten considerably worse within the last 3 months. He took another MRI and told me to wait it out (oh how I hate that phrase). It has been almost two years. I am turning 18 in a couple months and my knees are worse and more problems have occurred. My hips hurt and pop now. My knees are still very swollen, pop often and hurt no matter what I do. I have remained actively involved in karate the entire time. My instructor has noticed my feet turn out like duck feet and that my feet aren't fat at all. In fact my arches are too high. My hips have limited ROM as do my shoulders. My dad and brother both have the problem with their shoulders. We can't lay our hands palms up with our arms straight. He has also found that my feet roll in and that I can't get my knees over my toes when I bend. I have been prescribed so many NSAIDS that I am immune. Icing, ultrasound, estim, bracing, and resting only make things worse. I have had my blood work done for every joint problem out there. No I don't have arthritis I have been test four times and seen a rhuematologist. I am wondering if anyone else has this problem and if it has gone on this long. I would also like any advice, tips or ideas from anyone who reads this post. Sorry it was so long I just had a lot of information to put in.

SweetPeainSF 09-03-2012 10:43 PM

Re: It might get better eventually
 
Hi there -- welcome! Sorry to hear about your long-standing pain. I tore the cartilage in my right hip at age 14 and was told it was "growing pains" by a family doctor. I found out about the torn labrum at age 29. I understand your frustration. I wonder if the orthotics were meant to keep your feet from turning in? When your karate instructors noticed that your feet roll in, was this with or without orthotics?

I think one reason any surgeons are reluctant to perform any surgeries is that your body is still changing as you grow. I realize that you may have achieved your maximum height, but in women, even after puberty our hips change orientation which changes your knees. (I had to hold off on having jaw surgery until I stopped growing for a couple of years.)

Of course, the doctors should be the ones talking to you about your hips and knees moving post-puberty and during young adulthood. They should also be the ones giving you some diagnosis or indication of the reason for your pain or at least explaining what your MRIs mean!

janewhite1 09-04-2012 08:03 PM

Re: It might get better eventually
 
A lot of young women have some knee pain, but this really sounds excessive.

I would find another orthopedic surgeon for a second opinion. Do some research, find someone in your area who specializes in knees and does a lot of work with knees. Get the reports and the films from your MRIs, and bring them to the appointment.

monkeymorgan 09-05-2012 05:49 PM

Re: It might get better eventually
 
My feet don't turn in they turn out away from each other. I can turn them in totally opposite directions. I'm not sure what my orthotics were supposed to do, but whatever it was they didn't do it. My instructor noticed my feet rolled in when I was barefoot, but I was wearing them when I had shoes on. I never realized that your body kept changing after puberty. My doctor never even took time to explain what was wrong or how I could help myself. Sadly the doctor is the best in my area. I personally don't trust him by my mom does because he is a doctor. Any idea on how to help myself?

SweetPeainSF 09-08-2012 12:42 AM

Re: It might get better eventually
 
Hi there-- I hear your frustration coming out. Doctors are great people, with a lot of knowledge, but you are the only person in your body 24/7 and it sounds like your knee pain is really limiting you.

Here's what I would do: first ask your mom to help you get a copy of all your files. They're your files; don't be afraid to ask for them! Second, read them. When you come across a word you don't know, look it up or ask questions around here. Don't be alarmed by anything in the files; a lot of doctors will put in a diagnosis when they are really trying to rule out the condition but need a reason that an insurance company will recognize for X-rays/MRI/physical therapy/follow-up visit. Third, pay close attention to daily activities that increase your pain. Many times the activity won't increase the pain until later in the day, so keep a log of your activity and pain levels to keep track.

Then I would go back to the doctor with your observations and a list of questions from reading your files. The doctor could be the same orthopedic surgeon, another orthopedic surgeon, or a family doctor you trust. If you do these things, your mom may realize that your situation isn't getting better and truly troubles you. She may also help you by advocating for you, particularly with the doctor who has been unresponsive. (Moms can be the best healthcare tool!) The doctor will certainly impressed by your initiative and may give you better information about what he thinks is going on and why surgical intervention is not his recommendation. Ultimately, conservative treatment might be your best option, but, if so, you should know why and be part of the decision-making team.

I hope this helps.

monkeymorgan 01-27-2013 04:01 PM

Re: It might get better eventually
 
I saw a new GP and was sent to see three doctors. The new orthopedic surgeon took x-rays and an MRI of my hips. He also did a physical examination. He said my range of motion was limited, but he didn't find anything wrong. I then saw a podiatrist. He took x-rays of my feet and ankles and did a thorough exam. He said I was really flat footed and gave me orthotics. He said that my knees turned out with my toes, so my problem had to come from my hips. I can't walk or stand in my orthotics for more than about 5 minutes because they make my knees and hips hurt. They don't bother my feet at all. The final doctor I saw was the same rhuematologist as before. He took more blood and did another exam. He was at a loss too. He gave me Celebrex and sent me on my way. All of this was right before Christmas. The Celebrex helps about as much as M&Ms. I go back to the podiatrist in a few days and the rhuematologist in a few weeks. I would like some opinions. Should I continue to take all these NSAIDS? They aren't helping and I've taken lots of them in the last 5 years. I am worried about liver damage in the future if I continue down this path. I also disagree with trying to cover up my symptoms. I want to fix the problem not hide it. Should I think of maybe going to a university hospital? I have noticed during karate that my posture has gotten dramatically worse in the last 3 months. I also tried to ride my bike today and was hurting before I made it one block. My pain is worse too. I do make activity/pain logs before I go see any doctor. I also make a list of questions and a type up everything I have done so far with dates. The doctors do seem to take me more seriously when I do that (thanks for the suggestion). Yes I am frustrated at this point. I missed out on my teen years because nobody is willing to help me. Sorry for the second long post I had a lot of stuff happen on the fast track to nowhere.

SweetPeainSF 01-27-2013 10:47 PM

Re: It might get better eventually
 
Sounds like you are no closer to a diagnosis than before, but maybe some things have been ruled out? I agree that taking NSAIDs for ?no apparent reason? isn't really fixing the problem, particularly because they don't help! No need to create more problems from side effects.

Have any of your X-rays been load-bearing, i.e, standing x-rays? Did any of your X-rays or MRIs reports note anything of significance? If they don't, getting a second opinion on the films might be helpful: I have an operation report which notes no evidence of impingement in my hip; a more specialized surgeon, looking at just plain X-rays, was able to locate the impingement. There's a great hip surgeon in Nashville, named Thomas Byrd, who will perform a file review to determine if there's anything he can do surgically to help you. I contacted his office, but ended up locating a specialist closer to me.

I hope that your GP is tracking your progress; if not, I would recommend returning to the GP to ask for help in locating the correct type of specialists and evaluating the feedback you received. Going to a university hospital could be a great idea, if that is an option for you. You might also ask your GP about going to either a sports medicine orthopedic surgeon (they do very little surgery) or a physiatrist.

monkeymorgan 01-28-2013 04:39 PM

Re: It might get better eventually
 
No, I'm not any closer to a diagnosis than I was before. They did rule out everything I had been told I might have. That didn't really get me anywhere because my symptoms didn't really match up with that to begin with. I am stuck on the NSAIDS until late February. When I go back to the rheumatologist though I plan on bringing it up.

I have had load bearing x-rays and they were perfect just like every other x-ray. My very first MRI showed a cyst on the back of my right knee. I had an ultrasound that confirmed it. Nothing was ever said about it after that so I assumed it wasn't a big deal.

I think my GP is getting the reports, but hasn't contacted us to talk. I don't think she will be much help though. She wasn't able to do anything in her office. In fact she said, "You know more about what could be going on than I do."

I have already seen 3 orthopedic surgeons and had three different answers. My GP, newest ortho, and podiatrist all suggested that I either go to a university hospital or Mayo. The reasoning behind it was that since I have had problems for so long that seem to stump every doctor I see, maybe it is something rare that they haven't seen before that a university doctor has. I just see it as a long road to nowhere. I have been having my problem blown off for so long and a physical therapist literally give up on me I am to the point of feeling on my own. I feel like I am going to have to help myself if I need help. That is the reason I posted on here in the first place. Thanks so much for responding.

SweetPeainSF 01-30-2013 09:36 PM

Re: It might get better eventually
 
I totally understand where you're coming from. The PT who was helping me with my back issues threw up her hands when she couldn't recommend any exercises that didn't aggravate my hip.

I would call the doctor who prescribed the NSAIDs and ask if it's okay to stop taking them, since they don't help. I know some medications can cause problems if stopped suddenly, while others must be taken life-long (insulin, for example). If safe for you to stop (again confirm with MD), there's no reason to take meds that don't help. If the doctor is hoping that there will be a cumulative effect by taking them for a certain period of time (60 days?), then that's something to consider.

Definitely ask about the cyst found in your knee. It could be a cause of pain or could be a symptom of, and clue regarding, bio-mechanics gone wrong. Then, start asking for referrals to the best facility available to you.

monkeymorgan 02-03-2013 09:21 PM

Re: It might get better eventually
 
Glad to know that I'm not the only one with a PT that gave up. It is kind of a joke that I failed out of PT because I am a straight A student. I do manage to keep a positive attitude most of the time, it is the only thing I can do. I even hope to run a marathon someday. If that isn't positive I don't know what is.

I have 18 days until my appointment with the doc that prescribed the NSAIDs, so I will just finish them. I will also bring up the cyst while I am there.

I have already begun to check out hospitals in the Four-States. I am nothing if not prepared. Thank you so much for replying to my posts.

SweetPeainSF 02-06-2013 09:38 PM

Re: It might get better eventually
 
Perfectionists can have a tendency to be too hard on themselves. Years of experience speaking here. While keeping those marathons -- both literal and metaphorical -- in mind, don't forget to celebrate little victories, as well. Please feel free to post how your next visit goes.

monkeymorgan 02-22-2013 01:42 PM

Re: It might get better eventually
 
I saw a new doctor at the same practice and the podiatrist. Good news my feet aren't the problem and it is doubted that anything I do will cause serious damage. The podiatrist said that my problems were coming from higher up. The new doctor was the best I've seen yet. He listened to me and seemed to check everything. He said I should have an MRI of my back just in case, but he doubted it would show anything. He thought it would be a waste of time to go to a university hospital, but would refer me. He said that I shouldn't keep taking NSAIDs because I am not responding to them and they might cover up my symptoms making a diagnosis harder. He said that since I had been dealing with the pain for so long that I should just continue to do so. This all sounds pretty good, but it is killing me. I am no longer hoping for good news, I want any news. I feel like if anyone is going to help me now it is going to have to be myself. My mind constantly races. All of the "what ifs" are running through my mind. One would think being told that nothing was visibly wrong would put one's mind at rest. I am scared and a little upset. I was hoping for something...anything. I hit a brick wall full force. My hopes of ever getting better disappeared. I have noticed myself getting worse. I had to stop during karate because I was hurting. I discovered that walks and bike rides are out of the picture. I no longer have any hope for recovery. It is a terrible feeling to be completely helpless and have no where to turn. It would appear that the bridge on my road to recovery crumbled as I got close.

ozfan79 02-22-2013 06:22 PM

Re: It might get better eventually
 
Did you have an injury before your knee pain originally started? Does the area around your kneecap hurt at all (either at rest or during activities)? Did the newest doctor say anything about the cyst on the back of your knee? That is probably a Baker's cyst. That could be removed if the area where it is bothered you.

I have had several knee issues and several knee surgeries during the last 7 years. When I initially injured my left knee, I wasn't properly diagnosed until 8 months later. I was not able to find a surgeon willing to do the needed surgery until 2 years after that. The surgeon did two surgeries on my right knee as well. I know it can be hard, but keep hanging in there. I will try to help you by answering your questions. I can relate to your experience.

monkeymorgan 02-22-2013 08:21 PM

Re: It might get better eventually
 
No there was no injury. It started as a dull pain in my right knee then got worse. It quit after taking it easy during the summer. When I started back to school in the fall the pain came back, but in both knees.

My knees hurt in the front. The pain is constant. It even wakes me up when I am asleep. If I do any physical activity it gets worse. If I don't move for more than a few minutes then it gets worse. When the pain is really bad the back of my knees hurt and swell too. It has only done that a few times.

The new doctor didn't say anything about it because the cyst is in the back of my knee somewhere. For all I know the cyst is gone. I was told it was there about 5 years ago.

Does it get easier? I am worried that if I continue to get worse I may have to give up karate. It is the only thing I have yet to have to give up. How do you deal with having to give up what you love? How did you stay positive when things seemed to be getting worse? Were you scared about the "what ifs"?

Thanks for replying. I kind of felt on my own with nobody to talk to because nobody I know has ever had to deal with this kind of stuff. That is what I why I started posting online. I needed support and someone to relate to me. Thanks for caring about a random teenager you've never even met.

ozfan79 02-22-2013 08:59 PM

Re: It might get better eventually
 
Some of your symptoms make me think you have tracking issues with your kneecaps. I don't mean that they dislocate completely, but they may be moving out of place slightly and then going back into their groove. I had that problem with both knees. That is why two of my three surgeries were done. Did they do a specific x-ray where you were laying on your back with your knees bent? This is called the "sunrise view". This is the best way to see if there are kneecap tracking issues. My knee MRIs never showed the kneecap issues. After I had my surgeries, the pain in the front part of my knees went away. It has been 4 years since my second knee surgery, and I haven't had any tracking issues. I did tear my meniscus in my right knee, but that wasn't related to the tracking problem. I had a Baker's cyst removed from behind my knee when I was 3. I don't remember anything about that surgery.

Before I was properly diagnosed, the "what ifs" drove me crazy. I worry too much anyway. The undiagnosed knee problem just made me worry more. I struggled with staying positive, but deep down, I knew that the diagnosis would be made eventually.

I wasn't extremely active before my knee problems began, but even walking became difficult for me. I couldn't do things with my relatives because any trip that involved a lot of walking was out of the question for me. I was very frustrated and sad about this. I am so glad that I did not give up on finding a diagnosis. Since my surgeries, I am more active now than I have ever been in my life. I walk at least 2 miles a day several times a week. I also ride my bike on a fairly regular basis. I have even ridden in several charity bike rides in the last several years.

I hope I answered your questions. I know how important it is to have the support of others, so I am happy to try to help you through this situation.


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