Sorry for the delay in updating here, some have been following on fb and so hopefully most have atleast a general idea what has went on since surgery yesterday early afternoon. Ihavent updated here sooner as I was on bedrest and having to lay completely flat or at most below 30degrees for the past 28 hrs, In pre-op yesterday Dr.Bragg talked about how she had looked more in to lumbar shunts and talked to some of her former colleagues and while she initially thought she wouldnt be able to use a programmable shunt for the lumbar peritoneal drain she wsa told and research confirmed that programmable shunts can often be used in both types of shunts. She was going with a programmable Medtronic Strata valve just like my VP shunt is and initially planned to set it at 1.0 which is the second to lowest setting as she preferred to have some wiggle room for going up or down with pressures and amount of CSF drained if need be. She thought there would be a good chance we would end yp turning it down to .5 which is what my VP shunt is at but will discuss that in the coming days. She also felt optimistic she would be able to get the Lumbar portion of the catheter in to place without havbng to do a larger incision and laminectomy but more on that in a minute. I had the same anethesiologist and resident as one of the previous shunt surgeries and they went with the standard fiberoptic intubation and where nice enough to write down updated numbers for me on airway grade and tube size, etc. I have copiesof their actual anesthesia records from previous surgeries but is still nice to have the basic, more important information written down to share at other hosptals when I have surgery elsewhere. Surgery was scheduled to take 1 1/2 hrs or less but started around 2 and I finished around 6 6:30 or so so 4 5o 4 1/2 or 5 hrs. The reason the surgery took longer is Dr,Bragg did end yp having to do a laminectomy (removal of all or part of the lamina which is hte bone that covers the spinal cord area and prevents CSF from leaking out.). As I said above she mentioned it was a possibility shw would have to do this but felt optimistic from looking at previous MRI scans again that she shouldnt have to especially given how easily she was able to get the external lumbar drain in last week. Once again with this surgery like last week she inserted the lumbar portion o fhte catheter at the low lumbar spine and then instead of just threading it in a small ways up she threaded it up to chest level height (but in spinal cord/sub-arachnoid space) as this will prevent the catheter from backing out of the sub-arachnoid as happened last fall (a quite bad thing).
Because of the laminectomy along with the shunt placement (virtually same surgery happened last May with my first surgery with Dr.Bragg). She has commented on this before but brought it up again before surgery yesterday how tough and almost glue like (not exact words but meaning skin doesnt stretch/elasticy like a normal-non MPS pts) my skin is and how much tougher that makes it to get catheters positioned and passed/tunneled under the skin from one area (say lumbar) to side where the valve/reservoir are positioned and then to abdomen where a 3rd incision is made and the catheter is unneled in to the peritoneal area.
The laminectomy and scarring was likely more to do with the pevious spine surgeries (though shunts where never that low), less CSF pressure in the area this time and overall compression that occurs in MPS I pts.
The laminectomy and scarring was likely more to do with the pevious spine surgeries (though shunts where never that low), less CSF pressure in the area this time and overall compression that occurs in MPS I pts.
Ive had to lie flat for the past 24 hrs which has been semi-hard due to breathing issues (but we used oxygen at relatively small 2 liters over-night and took that off late this morning before I went down for a shunt series of the new lumbar peritoneal shunt and of the VP shunt pathways to make sure no obvious issues where occuring with connectors or fluid buld-up, kind of standard after shunt revisions/placement atleast with my neurosurgeon.
I had emailed the family that my neurosurgeon and her partner treat whose little boy has the LP shunt and VP shunt and whom my CHW infusion nurse also knew. This Mom emailed me back last night and asked to talk on the phone so we texted back and forth a bit and she called me earlier plus we talked for about a 1/2 hr. Her little boy has as my neurosurgeon said a lot of the same symptoms I do like autonomic signs/symptoms, possible has possible endocrine issues
and the 2 shunts of course. Dr.Bragg said earlier today that when the residents came by tomorrow they would likely say I was going home tomorrow (sun) but that I should correct them and tell them she looked at their notes and the earliest she plans to do is mon. Given ive yet to be able to pee on my own (also very similar to last May's surgery) and pain is so wildly up and down (treating with multi-med approach including combo IV and oral meds. I am glad she is being cautious and would rather make sure there are no side effects first from the laminectomy. Hopefully now that I am off of laying flat as of 30mins ago and able to get up and walk to the bathroom with a nurse in another 10-15mins I will be able to return to peeing on my own and not having to be to straight-cathed by the nurses. I do not want to go home having to self-cath like last year nor do I want UTIs again as I had just been thinking the iter week it sseemed like we finally got on top of these recurring UTIs from last May's spine nerve injury issues. I have 1 year urodynamic testing in early June at would be so great to go in with a more working bladder and spine nerve signals even though I know itt isnt fully normal.
All for now, more soon.
Erica
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