Friday, June 1, 2012

Day 4

Here is a picture of my scar on Day 4. You can see, too that one my fellow SIDS moms sent me some flowers to the hospital. I think that is incredibly sweet and I was so excited. In my guilt, Iris got a dollhouse to play with at the hotel.

So far okay. They've done some nerve damage to my head where the clamps were to hold it in place and tha tmight never go away but I don't mind. Maybe that means I can finally wear a frenchbraid or at least brush my hair without it hurting! :-)

flowers from lukegrantsmom

iris' dollhouse

scar on day 4
The real complications don't start taking effect until on down the road so this is actually the good part of the recovery process. So far so good, just tired. And kind of doped up as you can tell by the writing.


  1. I had my surgery done by Dr. Paolo Bolognese out of Great Neck, NY who is part of a neuro surgical group for ONLY chiari and chiari-related conditions. I had my decompression done about a year ago, and in no way does my experience compare to yours. First and foremost, and I'm no doctor here, but you should go to the emergency room. Tell them you just had brain surgery, they should give you pain meds, nausea meds, fluids, etc. etc. They need to check for a CSF leak. Once again I'm no doctor, but I have done research on Chiari and Decompression surgery and having gone through it all I know what needs to be done. You should not have been made to walk 3+ hours a day, they should have given you a catheter, and they should not have made you shower within the first day. Having EDS, from what I understand, obviously made things harder. They should have used the patch of your own tissue, not a synthetic; there is less of a chance for your body to reject it, and with EDS, I'm sure that chance increases. They wouldn't let me get my head wet until somewhere between 1-2 weeks after surgery. The incision stayed covered for at least a week until they took the staples out. In my honest opinion, you should sue the hospital for the horrible care they have given you. I was in the North Shore Long Island Hospital system, and Dr. Bolognese (my surgeon) does a few hundred surgeries a year, and most of those patients stay in the hospital I was in. So there is no excuse for the nurses to be "so used to patients with chiari" to treat you and throw you out the door. If anything, we require more care. You should have been in the ICU, with round-the-clock monitoring as well as constant pain killers and nausea meds. You should not have been in that much pain. For me, before surgery the pain was actually worse than it was afterwards. The only part for me was the pressure/soreness/stiffness of my neck, so it was hard for me to sleep or roll over. I also had nausea constantly after surgery, which like you, the nurses didn't seem too concerned with. However, after about 3 times of asking for the bucket within a 20 minute span, they seemed to pay more attention to me.

    Bottom line:

    As soon as you're healed up more, I would see a lawyer and sue. There is no excuse for the poor care you received.

  2. I've done a lot of research, too, and nobody else's experience sounds like mine, either. I don't know if you've read the rest of my ordeal but it actually got worse. My surgeon is a Chiari specialist and operates a Chiari Center. He is supposed to be one of the best Chiari surgeons in the world. So this boggles my mind.

    It is good to have some validation that this is NOT standard procedure and that I am not off base in thinking that I got poor treatment here. Thank you.