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Daughter's vp shunt, medtronics strata 2.The friday before mother's day for the first time i reviewed a series of medical records on my daughter.Partial records from er visits from the institution where her shunt was placed in 2007.She complained of it causing problems constantly.I was not informed at surgery as to what needed to be done for her after surgery.She has a 70 iq.Over the years numerous er visits necessary due to her severe head pain.Now evidence of eye and ear abnormalities.Shunt setting changes by itself in mri unit.I now know what i did not before: medtronics vp shunt protocol was not followed.The facility ns service did not give a card at surgery.I was not informed of protocol for shunt management.The ns left to practice in (b)(6).When an mri was to be scheduled.I did not get a call from them.When i called to see why, i was told he had left.I had recently mentioned to him about my concern as to realizing there had to be metal in shunt because setting changes in mri unit.I questioned risk for metal and mri magnet.Concerned for what seemed to be neglectful care, i sought care at (b)(6) service instead.The visits to them were problem focused.There was no mention there of regular visits due to shunt.Shunt may have been discussed but her pain which she connected to shunt was not taken seriously except by me.Her care for head pain over the years took place in emergency rooms city wide.I didn't know what was in my daughter's brain until after thanksgiving last year.The review of these records from the facility where shunt was placed indicate numerous events that should have prompted intervention.None occurred for cerebral edema, frontal lobe edema, twice the finding of "slit-ventricle' right side, shunt side.Finally encephalomalacia diagnosed on ct and no intervention at all.Last (b)(6) was called to er when ct scan found slit ventricle.They told me to fast csf flow from brain and must stop this so changed shunt setting.However, she is having non stop severe head pain that is a daily event.She says nobody listens and her pain is so bad she wants to die, then she says not really but its that bad.She says the shunt sets off the metal detectors at (b)(6) medical center er.Medtronics states that is not typical.My daughter had thoracic tethered spinal cord and a fluid filled cyst right next to it in a very closed space.I do understand currently that this condition itself can alter csf flow dynamics.Also she has had two surgeries for chiari malformation decompression.I've read where these pts sometime need an add'l lumbar peritoneal shunt too.My concern is that she may have been over-shunted and in her records from their er.They mention concern too.In this record it is claimed that, "over-shunting is indeterminate." i know that is because they did not investigate that possibility thoroughly nothing further done in that er but to note this in this manner.To protect themselves.Not once do these numerous adverse conditions in her brain result in any hospital admission.She is having severe muscle spasms in area of tether and spine cyst.She has been denied referral to expert in field of chiari, spine tether and spine cysts to evaluate if shunt is correct for her, etc.Concluding these records tie together neglect in her care, serious diagnosed conditions in her brain are ignored.And now permanent brain damage.These records link her shunt to cause of permanent brain damage due to overshunting.There are no experts in her field of neurosurgical need for rare disorders in (b)(6).The experts are few across the u.S.Until there is an eval by an expert of an extremely rare condition and her comorbidities the cause of her suffering remains in question.
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