Sunday, July 8, 2012

Reconstruction: surgical opinion #1.

But remember those tests where you really wanted to ask the teacher a question about the question, not wanting the answer, of course, but just to explain the test... but asking any question whatsoever was prohibited... so you took a shot at it...

That is where I am.
The test is about the reconstruction surgery. I know I will come to an answer, though. It will take as much time as it will take. Thankfully this isn't one of those timed tests you know?

I am quite exhausted, but since I haven't written in so long, I just wanted to get something out. I also have to call my parents... that is another whole blog itself. It is often depressing to call, and I haven't been able to do it enough (so sorry, dad).

Today I went to the first consultation about doing reconstruction surgery.
It was in Soroka. I just chose that as a measuring stick, and because initially I thought that I should be close to home for such involved procedures.

_ _ _ _ _ _ _ _ _ _ _ 

Remember the story of the ripping the bandage off? I must have written about it in the Caringbridge journal (the link for that is at the right side of the blog page), but I am too tired to go looking for it. Those entries have no titles, so it's harder to find certain things. Anyway, the story is one of the most traumatic experiences in the entire NF chapter.

What happened, in short, was on the day after the graft surgery. The [very talented] plastic surgeon who did my skin graft wanted to check on the donor skin site on the right thigh. That site was very delicate and painful, starting from the minute I woke up after surgery.
So, he wanted to see the leg, and he asked his colleague with him at the time to open the bandage. The colleague began to open it, and I began to show signs of great pain. He said that he thinks it hurts [her] too much, and suggested perhaps to give me morphine, and come back in a little while so it wouldn't hurt. The surgeon said he doesn't have time for that, and just open the bandage. He actually gave a direct command "open it" (in Hebrew "tiftach"-תפתך). I will never forget that. The colleague said he wasn't comfortable with causing me undue pain. Then, the traumatic part happened- the surgeon himself opened it. Ripped it open. I won't go into the rest of the gory story, but suffice it to say that it was three hours before I was settled and morphin-ed-up enough to be fairly out of pain.

Out of all the surgeons who could have been in the outpatient office today, guess who the two were.... yup. The angel and the devil himself. The surgeon, and the colleague.

I requested to see the angel, of course.

He remembered me. We talked about what has been going on these past five years (nothing much!), and what I am there for. Then came the exam.

He looked at Gapey, and decided that he'd like the opinion of... the surgeon who created the graft. My heart started racing, but for some reason... and I don't understand myself here... I didn't speak up. I didn't say 'I'd rather not see him', 'I'd rather him not to touch me'... none of that. I just passively sat there, scared. In one minute, the surgeon walks in. (remember- this is the surgeon from the graft surgery- plastic surgeon- not the original surgeon from the hernia).
He looks at me, focuses his eyes a bit on mine, and then remembers me. I see him and shudder inside.

He takes a look at Gapey. He somehow makes me feel humiliated, even though it is just an exam. He wanted a better look at the entire gapey, and undressing that much more felt awful.
He pulled, he pinched, he pulled some more. So much pulling of all the skin around gapey. I understand he had to do this- it was to see what there is to work with for the reconstruction. He was actually pulling the mesh also, I felt it. I told him, but it didn't matter.
How could I have let this surgeon touch me!?!?!?!

Finally the exam was over, and I could stand up to him, dressed.
He said lots of stuff, it is too much to write... I may break this up to another blog. I am exhausted.

Basically he said that his way of reconstructing the area would be with skin expanders- balloons inserted under the skin, blown up with saline once a week for six months. That is in order to create enough of my own healthy skin to cover the area. I would basically be disabled for that whole time. I can't imagine I'd be able to walk with these balloons blown up in my thigh and lower belly, right around gapey. Then, when the skin is expanded sufficiently, the surgery would be done to bring the skin together and remove the graft. It would leave one long line of a scar, one short one, and another one. That surgery; the one for the actual closure, would be all day- many hours.

So, that is ONE OPINION. Only one.
Interestingly enough, the second surgeon there-- the angel- He was basically, very subtly encouraging me to go get other opinions, and there may be other places with better ways to do it. He mentioned Ichilov because I am a patient there already, (the plastic surgeon is Dr. Gur, who I know of quite well) and it is often more advanced in their technology than Soroka. Yes, he said Ichilov is a better place to be. Unbelievable. He was very clear that he didn't agree with some of the things the surgeon said- one of those things was that the surgeon (devil one) had an opinion is that it wouldn't help at all with nerve pain or mesh pain, it would be purely cosmetic. Angel one said he wasn't sure about that at all, and *go get other opinions*. I was going to anyway, but this was so strong.

I asked him (angel one) if I could tell him a story. He said sure.

I told him about that morning five years ago; the whole thing. Tears started rolling down as I spoke of the scene with him & the surgeon, the command to open the bandage, then him declining to do so. I recounted the story as it unfolded from there, and what I went through. I told him that he was my angel that day. I said "I never got to thank you". He said he didn't remember that morning, and he isn't an angel, but he is glad he could be positive for me with all I went through. He took my hand.

_ _ _ _ _ _ _ _ _ _ _

My confidence in my decision is wavering constantly.
Gd isn't letting me request from Him to reveal the explanation.

This is a Big Test.

What I have learned from today is:
1. Bring Robert or a loved friend with me to these appointments.
2. That surgeon will never touch me again.
3. It is quite profound to finally get to thank someone who protected you (or in this case, tried to protect you), no matter how much time has passed.

_ _ _ _ _ _ _ _ _ _ 

Wednesday is plastic surgeon #2: a private one, here in Be'er Sheva.
I will also make an appointment at Ichilov with Dr. Gur. You never know... if he can do it without skin expanders, without me needing to travel there once a week for six months, it may be the best solution.

Yes, I waver. All the time.
I do, however, always return to how it would feel if it were done.
It would feel (*I* would feel?) Complete. Covered. Closed. Protected. And possibly,
 just possibly, less pain.
That's what I have to go on with this Test.


  1. It sounds wise that your taking your time to make the best decision. Your description of your experience with the bandage was so intense. Maybe it would good if medical students had to take a class experiencing being a patient before ever becoming doctors.


  2. Yup; and multiple choice tests are the easiest ones. I think your approach is good, getting multiple opinions so you have the information you need to make your decision. Interesting that the "angel" and the "devil" were both there; the "angel" reinforced your experience and opinion of him. You know your friends and family will support you in whatever decision you make.

  3. It must be so freeing to say "that surgeon will never touch me again." Clearly, he is not the doctor for you, and protecting your personal integrity is also part of healing. I recall that you had communicated with devil doctor in the past, and that he had "apologized"... was there any recognition of who you were at this meeting?

    Dr. Gur sounds like a good Dr. and someone you can trust.

    Please update on your dad.

    xxxooo Dev from NJ

    1. Oh, Dev- this isn't the doctor from my hernia surgery- he isn't a devil doctor. That is something else entirely. The one I am talking about here is the plastic surgeon who ripped off the bandage- he never apologized. And yes, he knew who I was, just didn't care. I'm sure the incident didn't even register for him as significant.

      Dad and Mom are home now, as of Saturday. Baruch Hashem. Progress is slow, but Dad is going well. He is walking, with a bit of a limp still.

      Mom still has serious cognitive difficulties; attention span problems, and some memory problems. She answers questions with one or two word replies, and needs to get off the phone quickly with me all the time. It is so depressing. She does have hope to recover, though, so we have to pray LOTS.

      Miss you! XXXOOO