Tuesday, August 29, 2017

Neurosurgeons (Shunt/Spine docs) have talked! - Possible plan..

Going to try to keep this short and honestly there's still a fair bit to be worked out but alas. Dr.Iskandar emailed me the summary from his, Dr.Bragg and Dr.Guillaume (UofMn Peds Neurosurgeons) Conference call the other day.

Basically the long and short is they are thinking we focus on the Lumbar Shunt (shunt that sits in my low back and right now tunnels up to Thoracic (mid) -spine and rthe valve +the reservoir. These 2 add on devices control how much spinal fluid drains and the reservoir is used similar to my Port for the weekly IV ERTbut in the case of my shunt the reservoir is used for testing the Spinal fluid (CSF) and/or anything else that's needed to be done with that shunt to test it somewhat less invasively (without surgery).

The plan atleast at the moment though I don't know actual timeline (I emailed Dr.Iskandar back and will call his Secretary this wk to find this info out) is to explore the lumbar (low back) area of my spine, see if there is an area that has more CSF and less scarring than what we've come across and that would allow us to move the current thoracic based catheter to low back where we virtually never had problems in the past. I am praying there is a more favorable area!!
I don't actually know how they explore the low back area, I mean imaging has been done so do they have to actually cut a long scar (my lumbar scar is already pretty lomg!) or can they go in somewhat less invasively with a scope and peer around various parts of the spine? If there's an area that is less scar filled and more CSF then Dr.Iskandar would move the cathether back down to low back space. This is the area we virtually never had issues with the LP Shunt in the past so I am praying.

Try adding 'On/Off Valve':
The other thinking was we try adding  a 'On/Off' valve separate from the whole spine exploration portion of any surgery (but during the same surgery) and then Dr.Iskandar I guess could remotely turn this on or off. This I am unsure how that works 1. they just do it at any random time? I do need to function so say its turned on and they suddenly turn it off and I did get really sick, what happens???? I definitely need to clarify that part.
 It's completely up to me I guess if we try this or not. Both Dr.Iskandar and I know we need both shunts so I'm just not sure as Dr.Iskandar even said in his email this part was my choice to try or not.  The only bonus would be in the slim chance we could do 1 shunt then we'd be able to get rid of the LP Shunt catheter which is of course the part causing endless irritation right now.
Big problem I could see there is out of the 2 shunts when I only had 1 shunt the VP Shunt failed more often than did the LP Shunt whereas the LP Shunt was frequently enough a problem but less often was due to complete failure.
Do we try? Do we not?
Related to that in his summary email Dr.Iskandar seemed to question even doing this part (adding on/off valve) and left it up to me if I thought we should try it as he commented our experience last fall when we clearly showed I needed the 2 shunts.
Due to this and several other times we've monkeyed with the shunts or 1 shunt failed and only 1 shunt was working or when we had just the 1 shunt in place I KNOW we need both shunts and Dr.Iskandar seems to get that. I'm kinda confused on this part.
He just commented in this part of his summary if we did show I needed the 2 shunts but we where not in fact successful getting the LP Shunt back in lumbar area the last resort and far less than ideal/more risk area would be placing the LP Shunt to drain from my upper spine (catheter placed internal of course) or from Cisterna magna  (base of neck). I'm really not very sure on any of this, is allot up in the air yet and much remains to be seen and to be figured out!

As any one who reads this and has read this for awhile may have figured out the hardest part for me of any of the MPS Stuff is not even surgeries or treatments (not that any of these are all that fun!!!) but the hardest parts are the unknowns and the uncertainties!
 Have to trust my God knows the plans he has and his plans are the best plans, right? I am grateful it at least finally feel like we are getting somewhere in trying to figure this all out!?!...
I head to Los Angeles tmrw (Weds) just for a couple days. Will update when I get back if there's any news.
Thanks for stopping by,


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