My daughter, 14, had an L-P
shuntCyanotic heart disease
Transjugular intrahepatic portosystemic shunt (tips) last May, after ICP and papilledema were not relieved with
diamoxDiamox
Diamox sequels. The cause of the ICP:
venousDeep venous thrombosis
Deep venous thrombosis, iliofemoral
Intravenous
Intravenous pyelogram
Intravenous pyelogram (ivp)
Pulmonary arteriovenous fistula
Pulmonary embolus
Stasis dermatitis and ulcers
Varicose vein therapy
Venous blood clot
Venous insufficiency sinus thrombosis, brought on by sinusitis and
mastoiditisMastoiditis
Mastoiditis - redness and swelling behind ear
Mastoiditis - side view of head. She had a
mastoidectomyMastoidectomy
Mastoidectomy - series, was on IV antibiotics +
heparinHeparin
Heparin sodium
Heparin sodium-sodium chloride. She also had dual ONSF, and 2 wks later an L-P shunt. This shunt was revised within a week, as MRI revealed "blood products" in the SC. It has been a year since hospital discharge, with no significant problems. HOWEVER, she gets "nerve pain" in her rectal area which had been constant/severe after shunt malfunction, and has gradually decreased, now occurs about 1x week,lasting for several minutes. This pain has not limited her,as she is back to competitive sports, miraculously, but we wish she had no pain. Do you think this pain will linger, due to the injury to her spinal cord caused by the bleeding after surgery? Do you have any suggestions? At our last follow-up visit to her neurosurgeon, he recommended an MRI to determine whether the shunt tubing was an issue. He wanted her to have another MRI two weeks later, but we declined that, as we encountered a patient who was on his 4th shunt surgery since last spring, and we do not want any more surgeries. My daughter has been off coumadin since August, after MRIs showed resolution of the CVST. The only medication she is still on is gabapentin (1500 mg/day, down from 2100 mg at discharge) and Zoloft for PTSD diagnosed after discharge.
It might be an idea to try to visualize where the distal end (the tip) of the shunt is.
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.