October 25, update to Oct 9th surgery

Olivia had excision of the temple nerves on 10/9/13.  The surgery was successful in stopping the throbbing in her temple area, which also came down into her cheekbones.  The diagnosis for this pain is called Trigeminal Nueraliga.  She has two vertical incisions in the temple area, back in the hairline so they will be hidden when healed.  She gets her stitches out soon, Tuesday 10/29.  She has had some issues with her asthma ever since the surgery, she had 4 ER visits since the surgery with her in an asthma attack.  This is extra excitement we did not need, and I am wondering if she had some sort of reaction to the anesthesia, we need to find out before her next surgery.  This did not happen the first time, or when she had surgery when she was younger to have her adenoids removed, so I’m not sure what caused it, but her asthma is still not under control even two weeks later, although it’s getting a little better.  This has not affected the results of the surgery, however, which we consider successful.  TN is a very painful condition, and for a minor outpatient surgery to be able to take away the pain, is a very good thing.

It seems that once you get one area under control, however, the pain in other areas becomes much more noticeable.  Her pain in the Greater Occipital area had come back when the results of the first decompression surgery had worn off, about 3 months later, but it was not back full force until recently.  Her Occipital pain is once again so severe that she is still bound to the basement, and is extremely light sensitive.  The Dr. had originally tried to spare her Greater Occipital Nerve (GON), and performed decompression only rather than excision.  This gave her pain relief down to a level ZERO for three full months, and considerably reduced her light sensitivity.  We thought it was gone for good.  Just knowing that she was level 0 for 3 months is confirmation of her diagnosis of ON, and a good predictor that excision will work.  It seems that we must go back and ask for excision now.  It’s really too bad, but it is still the only thing that gives her pain relief, besides a nerve block, and she cannot get those continuously or nearly as often as she would need for pain relief.  A nerve block gives her relief for about 3 days, no more.  She is anxious to get back for another surgery, as she is desperate to get her life back!  We already know they were scheduling for Jan, so are not expecting to be able to get back until sometime in February, four more months.

So, while we are pleased with the results from this recent surgery, we knew she would be needing more.  As mentioned earlier, this is a process, but we still believe in it as nothing else gave her pain relief, of any kind whatsoever.  We will be focusing on getting her asthma under control, and making an appointment for her next surgery.  She wants to get back to DC ASAP! Just the fact that she still wants to go back, and have this next surgery, after all that she’s been through, is testament to the pain relief that it gives her, that she knows she will get from it.

She is still on homebound to try to finish the 8th grade.  School work is very difficult for her, but she is trying to accomplish what she can.