Neurosurgeons and Orthopedists

Just a quick note - sorry for the delay.

I saw the Pediatric Nsg on thurs that the adult neurosurgoen I will now be working with reccomended I see (a colleague of his) just to get her opinion and see if it gelled with what he thought. She was well informed of my history (very nice!) and said she had spoken at length with my other Nsg and pretty well concurred with everything he thought. She said I could either chose to work with her or with him and/or they could tag team and work together on my case which seems like a good enough idea - 2 minds that seem very open and seem to want to look outside the box is good in my opinion! She ordered a xray shunt series (in my case with my particular shunt just 2 images) and said she would talk to my other Nsg and then call me on monday and we would have a plan of what tests next to see how the shunt is flowing. She differed only in that she also spoke about how LP shunts are much more prone to breaking/malfunctioning in various ways due to the smaller cathether but said if testing did show a problem either in scar tissue, flow or pressure they could either re-do the LP shunt or as the other Nsg said switch out to an VP. We will see if we get to that point though.

I also have been emailing back and forth with the ortho at UMn and he is willing to see me and his nurse is going to call me to set up an appt either at the end of his clinic day on mondays so we have more time or on one of the other days they will fit in an extra appt on a day he wouldnt normally see pts.

All for now - busy weekend here!

Erica

Apparently I totally forgot to post how the appt on fri went so here goes - I saw my Orthopedic dr and he told me that he just doesnt have the experience to do hip reconstruction and doesnt feel he could guarantee a good outcome with this surgery for me. (how awesome is a surgeon who is honest!) - He did comment how he loves doing surgery but this surgery is just very complex and most cases of reconstruction are done under arthroscopic approach but since that isnt an option for my case he feels out of his league so to speak with this. Instead he said because there are underlying complicating factors he would like to help me find an orthopedic dr who does reconstructive hip surgery - open approach he talked about in chicago but I told him I had been talking with the dr at UofMn who has a lot of experience with this atleast with MPS with MPS I kids. So I he asked for the UofMn ortho's name and I am in the process of figuring out if I will go see the dr in Mn or see one of his adult colleagues or see another reconstruction dr elsewhere. The recovery is alot longer and more indepth with the open approach and I dont know that other drs would reccomend it but I will be talking to drs at the very least who have experience.

Had a very good weekend - have a good night - will update after the Nsg appt if not sooner on thurs.

Erica