First of all, I'm glad your daughter is feeling much better now. These episodes of "nerve pain" can be related to antibiotic use as mentioned above, there have been documented cases of rectal spasms due to dysfunction in the pelvic floor muscles that was linked to a variety of causes, that included use of some antibiotics. I understand your concern about more surgeries, but I think it is not a bad idea to at least check some images to make sure the tubing and all the hardware is okay. You can get the information first and then decide based on that what you want to do. I see the decrease need for Gabapentin as a positive thing, hopefully these episodes will continue to decrease in frequency. I would make sure she is getting enough support to deal with the depression/PTSD issue. pharmacology is helpful, but also counseling and having a strong social support system goes a long way.
I hope your daughter continues to feel better.
Somehow I was never alerted when these replies were posted, and am just seeing them now. Thank you both.
As far as antibiotics - my daughter was on unisyn initially, then vancomycin, which was then switched to clindamycin and ceftriaxin, the last two for a total course of 4 weeks IV treatment.
As far as where the tubing is, the last x-ray and MRI showed I would say 4 feet of tubing length, which I was told was left in there to allow for growth. My daughter is slim, average height and build, and would have to be 7 feet tall and about 3 feet wide by my guess to need the amount of tubing that is in her. The neurosurgeon wondered if the shunt tubing may have entwined in such a way that it causes the pain. Honestly, as I said, I would love for their to be no pain whatsoever, but we fear additional surgery which would carry the risk of infection and other far worse complications than she is dealing with now. The pain truly does not last more than from several seconds to 3-4 minutes, and is probably less than once a week now. Since I posted the question intially, she has cut back on the Neurontin (gabapentin) and is now only taking 600mg/day, but her Zoloft dosage has increased from 25mg to 50 mg because of depression issues, which may be just from being a teenager, along with having gone through so much, and having some lasting vision issues. The vision issues are much, much less than had been forecast by many of her docs at the hospital, who expected that she would be virtually blind in one eye forever. A lot of her vision returned, and she is able to play sports, but does have less vision than before getting sick.
The idea that her rectal pain may be lingering effects of the antibiotics is interesting, and encouraging, really.
Thank you so much for your interest.
This idea is going to seem completely "off the wall" but I am speaking from actual experience. I am a retired pediatrician. I had an 11 yearold girl with a VP shunt who was experiencing what her parents thought was urinary incontinence. But what happened was that the tip of her shunt had worked into her colon and the CSF was dripping out her rectum. It was discovered when the tip of the shunt actually became visible/palpable at the anus. I'm sure that is incredibly rare, but you can see why I remembered it.
It might be an idea to try to visualize where the distal end (the tip) of the shunt is.
What antibiotics was your daughter on? Some of them cause violent rectal spasms for up to a few years after discontinuation of the treatment, and usually the spasms start some weeks after the treatment has ended too. Antibiotics that do that are the fluoroquinolones class (cipro, levaquin, floxin..) but surely other drugs cause similar side effects too.