Monday, June 6, 2011

Pills or surgery?

My pain doctor sent an answer to me finally. Turns out he is in America, and he transmitted info to his secretary, and she called me today.
He suggests to raise the dosage of the Lyrica by 150mg, at night, then add 150 more by day. That brings it to 600mg a day if I go there. HUGE dosage. But I have complicated types of pain. Tonight I did start with adding the first 150, and so far no recognizable effect. It has to build up.

I got to talking to Robert about it. I was reminded that way back when I had my last appointment with my surgeon who did the mesh surgery last July, he told me that he used a type of mesh which he chose based on my initial consult with him, telling him this is the first step toward plastic surgery for reconstruction of gapey.

He said, post surgery, when I told him that I still have a great deal of pain from it, that it'll go away after the plastic surgery. I said I am thinking of *not* doing the plastic surgery... he said he has no answer then about the pain. He intimated that it may never resolve itself.
He has no experience with pain from that type of surgery lasting so long. But I'm quite sure he never did a mesh surgery quite like mine.

The point is that almost  year later I have similar pain to what I've had for almost six months.
I am considering the reconstruction surgery. I am very surprised at myself for even thinking about it after all I've been through, but it actually makes sense.

This pain may not go away until I do that. He put in a mesh that is very strong, with the consideration that there will eventually be deposits of fat surrounding it and I wouldn't feel it. Right now there is just raw muscle, and raw skin graft with no fat layers at all protecting the nerves from the mesh. I feel where the mesh is, and in the ideal situation, a person isn't supposed to have nerve problems that feel things inside you. I can even feel it when I palpitate gapey, although I hardly ever do that because it still creeps me out. Gapey is numb to the touch, but painful inside. Much like my leg/skin problem.

The higher dose of Lyrica may help, we don't know yet. But do I want to take so many drugs? that's another subject altogether, actually, with my GP prescribing a new migraine medicine... a cousin of the one I had lip and throat swelling after I took it. She said it's a distant cousin, but I should be careful when I take it, and be aware of any signs, etc...

Is it better to take meds for the mesh pain, when I have other issues that need meds? This migraine med which I haven't had to try yet... is it really a better option than the huge wad of Advil I take when I have a migraine? Advil is a big no-no with my kidney disease. But how about trying a medicine I may have a dangerous reaction to, but it is better for the kidneys? There is nothing new in the world for migraines. Not many choices.

Pills, pills, pills. Lots of Lyrica... possibly in another 8 or 9 months that dosage, too will become less effective, and then what do we do?

My gut huts every day, most of the day.
Drugs are hard on internal organs; liver, kidneys, heart.
The circle of interventions is a swirl, getting greater and greater with every challenge to overcome, and always with the threat of falling into the black hole swirling down.

Reconstruction surgery (surgeries, actually). The hope of taking care of gapey pain forever. The risk of it not taking away pain, the risk of making things worse once we take off the graft.

I am seriously considering it. I could reduce my pills. I could close gapey.
I remember also a doctor in Ichilov from the orthopedic oncology unit where I go for my PVNS follow-up. He also said, over two years ago, before I had the mesh put in, that closing gapey would solve the nerve problems. Putting fat layers back where they need to be is good for this sort of wound.

Pain pills vs. surgery.
I think I am opting for surgery... once and for all. Give my organs a chance to be healthy instead of long term pumping pills into them. It's also a chance to be stuck in bed and write lots. But that'd be *it*. Gapey would be a thing of the past. Impossible for me to imagine.

But not before my oldest son's bar Mitzvah, early November. So we have time. I don't have to decide now.

But it makes crazy sense, right?


  1. That makes crazy sense to me. But what a difficult choice. I'm glad you have time to reconcile yourself to it. Is it really not possible before the Bar Mitzvah? That seems so far away, and I hate for your pain to continue all that time. (Although maybe the Lyrica will help with that, at least short term.)

    Good luck!

  2. May HaKodesh Baruch Hu bless you to make thee right decisions and protect you from any un-needed pain and anxiety. Refuah Shlaima
    -David Bernstein

  3. Your reasoning seems sound to me. I vote yes (but I know it's easy to vote when I'm not directly impacted by the risks).

  4. just wishing for you, the right decision!. I just learned that when we read the aseres hadibros on yom tov morning, it is a special time to ask for a refua. you will be in our tefillot. chag samaech, rochel.