Keep in mind while reading this, that I am only 29, soo my largest concern is what am I going to have to deal with when I am old!
At the beginning of this year, I had been diagnosed as having Marfan's Syndrome. As a consequence of the syndrome, I have Bilateral-Patella Alta with Chondromalatial-Osteo-Arthritis as well as various other joint instability & inflamation problems.
My question is, when is it necissary to take a joint problem to a physician/specialist. As you can imagine, I have various ache's and pains from sub-laxing joints, dislocations, inflamation and even costochondritus which is so frequent, my physician is hesitant to give me any more anti-inflamatories due to risk to my liver and kidneys. The most that my physician's has suggested is bracing and anti-inflamatories. My major concern with this, is that they don't truely seem to know what is wrong in most of the cases.
In terms of my knees, I have had problems since a young age, which started with Osgood-Schlatter's and then progressed at the age of 16 to frequent dislocations. Doctors keep on threatening surgery but after recovery they back-out. I had a serious dislocation of my left knee in Feb 2007, requiring hospitalisation, reduction under anheasthetic and 2 months in a closed reduction cast. All the while, the specialist was stating that he was positive I would need surgery once recovered. When the cast eventually came off, he told me he had no idea how to help me and that he was afraid of performing surgery as it might cost me the mobility in my knee.
- Do I wait untill my knee finally fails completely?
- Would I have more or less pain after corrective surgery?
- How do I monitor the Chondro-Osteo-Arthritic degeneration?
I have frequent burning pains in my left wrist, as well as simmilar pains, occasionally, in my right wrist and infrequently/randomly in my hip, shoulder-blade and elbow ... mostly on the right side. My second digit on my left hand is also hurting on the first joint, when flexing it which makes me wonder about atrophy due to the braces I am wearing. One doctor has identified the wrist pains as possible loss of cartlidge (Which I assume is either osteo-arthritis or similar to chondromalatia), my main GP does not know what is causing it and had initially suspected a ganglier while a physio-therapist suspected nerves in my shoulder due to muscle spasmisms. None of these findings has been proven, especially due to the fact that X-Rays don't yield any conclusive proof (and as I understand it, can only be proven once advanced degeneration has set in and the spaces between the joints started narrowing) one way or the other and that the pains is so irratic, I can not explain when or why they occur (Along with the fact that my pain regestering has been affected due to the fact that as a kid, growing up, I assumed the pains and problems to be normal and that I was just whiny).
- Do I continue wearing wrist braces as a preventative measure or will that increase my risk of atrophy?
- Do I seek further consultation and with whom?
The latest development, is that my right shoulder is very sub-lax. As soon as I lift my elbow above my shoulder or rotate my elbow while my arm is bent, to open a door or while steering my car, my shoulder would slightly pop out of position and pop back. The easiest way to demonstrate this is for me to hold the back of my neck with my right hand and then rotate my elbow upwards which immediately pop's it out. I would then have to rotate my elbow back down to pop it back in. I doubt it is completely dislocated at that point, unless I am expecting the same seering pain from a knee dislocation to be present during a shoulder dislocation. It is almost as if thow the shoulder blade is loose. I can "lift" my right shoulder blade up without moving my shoulder, which is odd as I can not do the same with my left so either my right shoulder blade is totally loose or my left is in spasmism again.
- What is the risk of damage to the joint during these sub-laxations?
- Whom do I see, if anyone, in order to investigate the reasons for this?
These are but a few examples as I have had for example even ankle and hip sub-laxations at times.
Have you seen a Rheumatologist? If you haven't I think that would be a good next step. Regarding your question about when it is necessary to take a joint problem to a physcian/specialist -- my answer is: as soon as possible. If something is happening out of the ordinary in your body and you are concerned about it, get yourself to a doctor, especially a specialist. It becomes hard to catch up with inflammation if it gets too out of control, so your best option is to attack it right away.
Pain is not normal. You deserve to feel better. I would also recommend you get a new doctor if you are not happy with the way your treatment is going or how the doctor is treating you.
It sounds like you have a lot going on, so it's going to take some continued dilligence on your part to find out the best method for treatment, etc. Stick with it and be an advocate for yourself because that is the surest way to getting on the path to feeling better.
I would like to offer a different approach to you're joint inflamation and instability. I know a number of people with difficult physical problems who were helped by The Egoscue Method. I would suggest a search on Pete Egoscue or The Egoscue Method. Then even if you aren't sure how this system could help you that you call any of his centers to talk to someone about you're specific problems. They can explain the method's benefits and how it could create stability for you. I don't know if he is still at the downtown San Diego....4th Ave, I think....or another San Diego location; but you could call that Egoscue center listed on the website and ask for Justin. But any of the centers can give you info just tell them you want to talk to the best person there to discuss you're situation and how this method might help you. The body, given the right ingredients can heal itself. No fear.....take charge of you're health and you will experience the results you seek..... I speak from personal experience.
The best to you..............have faith........... it will happen if you take responsibilty for you're well being and realize that you can heal yourself taking positive action. It took me way too long to get this, going from doctor to doctor, getting nowhere with a difficult problem, except out of money. You're young and can have a mostly pain free life and if this method can help you and I'm nearly certain it can, you will probly see the results in a relatively short time.
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