Tuesday, December 8, 2009

medical update

What a day.
What a day.
I need to sleep, but my nervous system isn't quite there yet. My body is profoundly sleep deprived, but my mind is too wired to make a plan about that. I just took a sleeping pill. The body can't do anything the mind won't go along with, will it. I have about 20 minutes until I start to feel drowsy from the pill.

It's actually really amazing that I'd need a pill, isn't it. But anyone who wants to understand sleep problems knows that it doesn't depend on how much the body needs to sleep that helps one to fall asleep.

It has just been so loud- like the volume in my head has been turned up about 23 notches or something. It takes a long time to get the volume low enough so I can fall asleep. And I don't have a long time, morning comes earlier and earlier every day. I have to keep dong this, the kids need me, so I'll keep on. But let me officially say here that I'm not sure how much more I can do on not enough sleep.("enough" for me is normally 9 or 10 hours... or even more. That is unreasonable with these circumstances.) Eight more days until Robert returns from the US.

I'll skip here many details that made the day more nerve wracking and get to how the appointment went at Ichilov, orthopedic-oncology ward.

Not fabulous news, but not proven yet until I have my MRI in a few weeks. Not as much improvement as was expected with my PVNS surgery. *I* was impressed with the range of movement I achieved after the tumor was removed, but my doctor was not as impressed. My thigh joint still gets stuck about half way arching outward (for example: lying on the exam table, knee bent, moving leg outward toward the table. Inward movement also hurts, but I wanted him to know that it is definitely less pain!), and it is still quite sore. We aren't sure how much of the tumor was excised, so we'll be wiser with the MRI.

There is also now suspicion of PVNS in my right thigh. That's the right thigh- the innocent one in this whole crazy picture. Range of movement is getting more and more limited. The angle measurements are markedly different than they were 3 months ago.

And here is the honesty that I haven't written about because it is a taboo to write, but I have to get over that fear. Putting something into words is the first way to remove some fear from whatever it is you don't want to tell anyone....

I have been having pain in the right thigh & hip joint for many months now, steadily getting worse. It is the same pain I have become so familiar with that is the PVNS specific sort of pain. Like it is in the bone, deep through my thigh. I thought it was because of all the limping and crutch usage; being unbalanced for so long. But it is getting worse, not better. The PT hurts it, although I work with the pain, optimistically. It is not unusual (in the way of one having this rare disease looks at things) for PVNS to be in two joints, the two symmetrical joints- two knees being the most common I've seen on the support list I'm on.

Also the circumference of the right thigh is evidence of something inflammatory. It is a centimeter bigger than it was 3 months ago- and that is with losing 5 kilos and muscle mass from my legs. Good trick, eh?
So my doctor added onto the MRI request to include both hips & thighs.

So I asked him what would we do if I am not rid of PVNS? He asked me about radiation treatment. It is a good suggestion, but not appropriate for me. In fact, in my situation, I could loose my leg if we try it. But this is a progressive disease; leave it alone and I'd lose the leg or need thigh joint/hip transplant surgery, eventually anyway.

His answer: "I don't know, Sarah".

My answer: Imantinib...??

(Anyone who is interested in reading some PVNS banter on a facebook group set up for PVNS sufferers, go here. Many people, it seems, have multiple surgeries, and some have it in both joints of whichever joint it started in)


  1. Sarah I totally know what you mean by being so tired you can't sleep. I hope you can get a nap in tomorrow while the kids are in school. I too need 9 hours of sleep and not getting it too many days in a row is really really hard. It has to be especially hard for you because your body is not back to full strength.

    So sorry to hear the results of your doctor's visit. I hope the MRI results are better than expected.

  2. Sarah. Hang in there. You're there for your kids and they know it. I hope you've been able to line up a babysitter every afternoon.

    I hope the MRI tests show something more manageable, like plain old arthritis, which I understand can be super painful but treatable, with meds and surgery.

    Promise yourself a day at a spa (Dead Sea?) where you can soak away some of the aches and pains and worries, soon after Robert's return. If the results are good, report it to your doctor.

  3. Sarah,
    I just can't believe or even digest your post!!!! I want to write just that I have read your entry and I will be in touch with you a little later before you crash for the night. Be strong!
    Love, Miriam

  4. Sarah yekirati For lack of words, sending you a big strong hug through cyberspace. With you with love, C

  5. Hi Sare,
    first of all, I'm so impressed that your kids got to bed happy, with Abba away, and you shouldering the responsibility. That in itself is a tremendous feat! It's hard to be sweet and loving when we're really tired. Yes, spa treatment reward is in order.

    Second, LOL and hugs to you. Especially over the next few days until Robert gets back. And until you get your test results.

    What's the story with the imanitrib? (sp?) Do you have that as an option yet?
    Also, how is Robert's father?

    LOL Dev and Mishpacha