Not only will I be having the 3 part hand surgery on Nov 29th (carpal tunnel, tenosynovectomy (fancy word for cleaning the tendonds in the wrist and hand) and fat pad grafting to cover the released nerves in fat to form a protective barrier) but today I saw Dr.Bragg and she feels like we should go ahead w the shunt surgery to externalize 1 or both ends of the 2 shunts (likely just the VP shunt end) and see if having the shunt still open and internalized other than the portion draining outside my body can give us some answers. The biggest question being are the 2 shunts under-draining bc my body isnt absorbing the CSF properly? If this proves to be the case and I get good symptom relief as w the lumbar external drain (pre-2nd shunt placement) and EVD then we will look at where to revise the shunt(s) (again likely just one of the shunts) to w her commenting on several options such as chest, atrial drainage, etc. She said it is still possible we'd have problems w absorption but we are going to try and find the best answer(s) and she may end up doing several different changes this in-patient stay before we land on a final solution. The shunt drainage will likely be the same as w the external drains; draining in to a IV type bag and regulated to a certain amount of fluid per hour.
She is planning to do the distal end externalization under general anesthetic as she said she didnt want to torture me w/knowing how toughened the skin gets and how much scar tissue builds up very quickly around my shunts in the past. She thought id be able to go to the regular Neurosurg floor vs having to go to the Neuro-ICU bc I still will have the shunt valve implanted as well as the 2nd shunt will still be internalized. Some of the possible revision locations she talked about where pleura, (lining around lungs), chest, and atrial although she is aware of the cardiac issues and my Cardiologist is really against us putting any of the shunt in the heart as I already have the central line there and would increase infection risk alot to Port, shunt and heart (endocarditis) especially given the cardiac issues I already have w multiple valves and severe enlargement of L sided atrial issues. I think she'll be planning this right up till we have to go back in and revise the actual shunt to a location.
Sat's WALK was amazing; I just volunteered in the kids area - there where 3 of us running the kids soccer event (for any kid that participated we gave away soccer balls and had 75 of the balls and by the end still had kids asking if they could have one after we where out. Amazing turn-out! My neurosurgeon was actually the invited guest speaker which I loved that in her short speech talking about shunts and research and causes of Hydro she even mentioned the genetic component of hydrocephalus (hydro as a secondary issue such as my case from the MPS I dx). The room/hall we where in at the Zoo was literaly huge so it was impossible almost to see everything and she wouldnt have known I was there and I had forgotten she was there so I didnt go looking for her to say 'hi'. I mentioned to her today that I was in the kids area and she said to me she wished she would have saw me/known I was there and we talked about the event as a whole for abit. The fact that she would take her time, on her day off, drive that hour+ to the Walk and give a short presentation is amazing and apparently she also attended last year as well! She's pretty amazing. :)
All for now; I see my Pain Mngmt dr on Thurs., back to regular Infusion monday, Pre-op on Tuesday next week and PT every Weds for an hour. It is also back to my 2 weeks on for sunday school.
Thanks for stopping by,
Erica
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