yes or no?

I hate that PVNS still has a hold over me after all of this time. Symptoms began about 7 years ago and went undiagnosed, well undiagnosed and misdiagnosed, for about three years... During that time it wreaked havoc on my body and my mind. I remember the pain being so bad that I could not stand at my kitchen counter and even cut up a salad without tears coming to my eyes from the pain... When I was officially diagnosed and set up for surgery, I cried... not from the fear of the surgery or of the disease, but from relief, that there was something specific causing my pain and that there was a potential solution. While the surgery was tough, and the recovery tougher, I already felt better than I had felt in years. I was afraid that I would be one of those people for whom PVNS returns...and I feared that it would come back stronger than ever and once again consume my life. My six month and one year check ups were great, and there were no signs of PVNS rearing its ugly head... on my two year check up (2009) the MRI report noted that there was a cyst in my knee... When I heard that I panicked, certain that I was once again going to have to have major surgery and go through this process again... but when I talked with my doctor, he said the cyst was scar tissue from the surgery, that the person who read the MRI would not recognize it as scar tissue because so few people are familiar with PVNS and what to look for on the MRI. I left that appointment floating on air as my doctor told me he did not need to see me for two years. Which brings us to now...

Although my appointment is not until June, having played the insurance company games and having learned that as the patient you must advocate for yourself... I began, in March, talking with my primary care doctor's office and got the ball rolling. I had my MRI in late March... and at the MRI got a hard copy of the disc of images, and asked that a copy be sent to my Boston doctor, to which they agreed. I tld my doctor's office in Boston it would be coming and they agreed to let me know how it looked before my June appointment. At the beginning of last week I contacted Boston to see if they had reviewed my MRI. They had not yet received it. I had to make contact with the place where I had my MRI and have another one sent. Apparently the woman who had taken down the information when I had the MRI, of who to send it to, didn't complete the order and it was never sent. (This is why I start early... AND get a hard copy for myself.) This week the MRI images arrived in Boston and I got an email from one of the doctors who works closest with my specialist, who said that there were PVNS nodules in the knee but that my specialist said the MRI looked alright. This, of course, confused me and made my anxiety about pvns start to stir...

So we started several emails back and forth... it is possible that the nodules that are now visible on the MRI were also there in 2009. (I do remember at the time, my Boston doc saying that the images in the 2009 MRI were not as clear as the images from 2008, which is why I went to a different place to have the MRI this year.) Because PVNS is what it is, I know that it is impossible to remove every pvns cell... I opted for the open anterior and posterior synovectomy because it is the most radical and has the best chance of removing the most cells... but I know that it is possible, probable actually, that not all of the PVNS cells were removed in my surgery. I asked if having pvns nodules meant that I was heading down the path I was on before... pain...swelling...immobility...etc..And wanted a clear yes or no... I was told that I should not let my anxiety start to get excited... that if pvns is once again trying to come back, that it will be a slow progression and that I should not let this news in any way impact what I am doing, how active I am being, etc. I have been asked to get a cd from my 2009 MRI in order for them to compare the two, to see if there are changes, and if so, if they are significant.

So... I am waiting... and am feeling less anxiety than I might expect myself to feel, knowing that my head can often get me into trouble with overthinking... I will be glad to have the opportunity to see my doctor again in June and in the meantime will think of questions to ask him... I always have a list... which I think he now expects...

I remember, somewhere along the way, I wrote a letter to PVNS, via this blog... I did so to try to take power away from it and to not let the fear of its return stop my life or prevent me from doing what I wanted to do because I was afraid I would trigger its return... (which to my knowledge because of its nature is impossible...)

I admit that while PVNS has not been in the forefront of my mind, until recently, it still has power over me... any minute pain in my knee and my head goest to PVNS... any little snap, crackle, or pop, and my head goes to PVNS... but for the most part I have done what I wanted to do... and I can't say that without thinking about having walked two half marathons in the last two years... and planning to do my third this fall...

But... I also admit that I do not push my body as hard as I could during my workouts... I do not go as fast on the elliptical as I could, and didn't shake my booty as much as I could at Zumba the other night... because there is a part of me that thinks, if I overdo it will come back... full blown... so... it still has me... power over me...

I am going to assume that all is well, until I have my face to face conversation with my doctor in June. And I am going to continue to work out, walk a lot, and remind myself that if I ever do need to have another surgery like I have already had... I need to be in shape for it, so that recovering would be easier and faster than it was last time...

That being said... Positive thoughts are welcome!