Sunday, July 12, 2009

Update: consult today

I'll update now, but I'm not in a particularly writing kind of mood. I am still processing. But, since I know I promised an update, I'll just report the main points.

1. The treatment plan from Prof. Bikels is arthroscopic synovectomy (removal of synovium).
2. It will be in in Ichilov hospital with Dr, Udi Raht preforming the surgery. (He is the orthopedic surgeon I had a consult with about a month ago at Soroka).
3. It entails a week in hospital; one whole day before surgery to get intravenous doses of Vancomycin, the surgery (roughly about 4 hours), and 4-5 days recouperation and observation before going home.
4. There is no follow-up. Radiation is not an option for me because of my post- NF lymph system problems.
5. The goal is that all the tumor and all the synovial matter will all be removed in this surgery, but it isn't known if that will be successful or not. Some of it will inevitably left; it is in my hip joint which will not be opened during surgery, so it'd be impossible to get it all at this surgery.

For an unknown period of time; maybe a year, or two, hopefully more, I will hopefully be free of PVNS. Maybe forever, if I'm lucky. We'll see.

The surgery will be within 3 weeks or so, he'll give me an exact date in the coming days.

Any information on weather or not I will try the Imatinib will be in another blog entry. Basically, only if I feel the PVNS coming back after the surgery. We got the phone number of this doctor of the patient in Texas, and Robert plans to get in touch with him. More on that when there is anything to talk about.

4 comments :

  1. Wow, Sarah, I really hope this works!! You are constantly in my thoughts and prayers!

    I keep meaning to call you but I am so freakin' tired that I barely do anything all day besides sleep.

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  2. Sarahleh - Just for you to know I read what you wrote. My prayers are with you. And with you, too RivkA!

    Love, Rivka

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  3. Sounds hopeful!

    Just a thought: maybe get your own 'patient population' going for an informal study by suggesting imatinib to the members of the PVNS support group. If a number of people give it a try, you might get more of a feel for how effective it is.

    Larry

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