Tuesday, August 4, 2009

"There is no precedence for this"

That is a quote from my orthopedic oncologist (Bikels) today.

I am now home again.

We went to Ichilov hospital early this morning, and I was admitted to the ward. Then it came time for me to meet Moshe Yanniv, my surgeon-to-be, and have him examine me.

Although the ward had my MRI, and digital photos of my whole graft and scarred area already a month ago, Yanniv had not seen any of it yet. He was not yet prepared (by Bikels) for my case.

He inspected my whole hip, Gapey, rage of movement loss, nerve damage (testing with his thumb nail), and lymphatic swelling, and said "I don't think I can get in there".

Then he studied my MRI for the *first time*, very slowly, frame by frame, and said again, quietly, that he doesn't think he can get into the part of my hip where the tumor lies- in the smallest central part of my joint. Lots of scar tissue, abnormal anatomy, not clear on where to find ports of entry for the arthroscopy.

Then he went into Bikels' office to consult with him. Then, apparently, they called Dr. Raht (the orthopedic surgeon I saw in Soroka a few months ago) to consult. Raht also said he is unsure of exactly how to get at the PVNS material and take it out because of my structural challenges.

The decision? To have Yanniv and Raht plan the surgery together, and preform it together, in Ichilov.

This is what Dr. Bikels said to me:

"This is unprecedented. I have never, in all my experience, seen Yanniv ask for asisstance for an arthroscopic surgery. He and Raht are **the only** experts on hip arthroscopy in the whole country. Hip arthroscopy is nothing at all like knee, ankle, or shoulder arthroscopic surgery- it is completely different and much more complicated and specialized. This is the first time ever that these two surgeons are doing a surgery in partnership. I know it is inconvenient, and your pain, unfortunately, will continue for a little while more, but we decided to postpone your surgery. I will be involved immediately in setting up a new date that both surgeons can do this procedure for you. It may be 3 weeks or so. I am aware that this change of plans is serious for you with your parents here from America, but I'm sure you agree that we are doing our absolute maximum for your health and recovery from this disease. I will be in touch with you in the next few days on my progress."

Speechless. A half hour, I couldn't speak. My parents spent over $2000 to get here to support me for this surgery. They cannot return again any time soon, it is too hard on them. The trip to Israel for elderly people (78 & 76) is very hard.

It is such a shock to us all.

This could have been avoided if only Bikels would have prepared Yanniv for my case. It should not have been that today was the first day he saw me, or my MRI, and was never shown the digital photos of my scarring and grafting. That was just really wrong.

Of course I do appreciate that they are doing the absolute best for me, and I respect Yanniv *completely*. I have a very good feeling about him, and that he is a talented, humble surgeon (two words one doesn't often find in the same sentence together).

So, here I am in the same state of health I was in yesterday, with no surgery date yet.

Everything that happened today did *not* help at all to put my soul at ease about going through this surgery. Now I realize there are much more complex issues at stake, and I am deeply worried about my body's future.

In the meantime, this disease continues to deteriorate my hip joint.

And that's the news today from me, your friendly resident "hot potato".

6 comments :

  1. Dear Sarah,
    I am so sorry that these doctors are making you wait yet again. May there be a higher reason for all this! And, Asher is wondering if perhaps you should appeal to Dr. Shimon Glick for justice?
    love,
    Hannah

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  2. dear sarah,
    i am so sorry and cannot imagine how you feel - your pain goes deeper than your words. as we believe that things happen for our best - let's hope to see the light on this one really quickly.
    hope to visit soon
    shlomit

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  3. ack! i came looking for an update and this is not the one i was hoping for!
    i'm so sorry! hang in there, the Plan is slowly being formed for you.

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  4. Shoulda, woulda, coulda might apply here. But then again, it does not seem that anything applies! One second at a time is about all one can go in this situation.
    Our love and total support.
    brc

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  5. I'm so sorry about this latest dip in the roller coaster you've been on. It seems like you are the special 1% if far too many cases! (We heard this a lot with my nephew Nicky with his prenatal issues -- 99% of these cases do this, but his did that. Hmm, no one has ever seen THIS before.) I'm hoping for the best for you.

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  6. Sare, I'm so mad for you. I am just furious. I don't know if that helps you at all, maybe letting other people be mad for you helps? I'm furious for your parents too. Of course, we know it's best for you that these two doctors work together after they have each prepared adequately+. They just shoulda figured that out before.

    In the meantime, we all are working on that emunah with you! We're all rooting for you! We all love you! We're all with you. Gd willing, one day in this life we'll get some inkling about the bigger picture here.

    Isn't there anyone to sue, sue SUE! the American way? Maybe that medical help center can guide you towards that. And I think the press would have a great story.

    Raging, and with

    Lots of love,
    Devorah and family

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