So I copied this from my fb post and will add additional bits of info. My parents and I had to be at the hospital at 5:30 this morning (my neurosurgeon being as sweet as she is apologized and just said she had wanted me as her first case of the day and was being pressured to move me to later in the day due to other Peds cases she had). I fell asleep at 2:00 and woke up at 3:00, to my parents at 4 and we left my parents at 20 after 4. The LP shunt revision this morning was fine though not results nrsgn and I hoped for. She took a 'one part at a time' trial approach having fairly well ruled out lumbar and peritoneal catheter obstruction thus she changed to a new valve and reservoir. She also partially opened the lumbar incision to re-secure the cathether which was loose and tie off the fluid (pseudomeningocele) leak and clean out that CSF bubble. Anesthesia went "ok" w/minor issues using lighted scope and small tube - they accessed my port a cath and for whatever reason also started a peripheral IV in surgery which immediately blew in recovery. (some day anesthesia drs will listen when pts who get weekly infusions tell them where IVs do NOT work in their hands or arms!
Talking to nrsng just before I asked why she thought I would have had H/A relief even if temporary with the last surgery the end of may and she thought this was not because of the valve working particularly well (to much resistance and gravity so not enough fluid can be drained off. Instead she thought the H/As had improved (really improved!) because of the fluid(pseudomeningocele) which acted essentially as a pocket for CSF fluid to drain and provided temporary relief from the H/A's for the 4 or so weeks I felt really well until pressure in the pocket essentially equaled pressure in the spine/brain. (I am not quite sure how to explain this it made sene when nrsgn explained it though and had s/t to do with the distance between LP shunt placements and where the problem actually is occuring (brain/ventricles) and gravity +smaller tubing size and inability to use programmable valves in LP shunts again due to resistance). Because there is no place for that pocket of fluid to have gone which in and off itself could have caused problems - unlike in a efficient shunt CSF (cerebral spinal fluid) would build-up, drain, reaccumulate, drain, etc. in this pocket the fluid met resistance in time and thus fluid could not be reabsorbed and more couldnt drain into it. This also lead to swelling along the actual shunt tract to the valve again pointing to to much resistance and not enough 'let out'.
Neurosurgeon spoke about the possibility of switching to a VP shunt and her concern if I would be scared or essentially freaked out by this and she mentioned that while my ventricles are small for communicating hydro she still felt this would probably be a better overall possibility for headachr control and lesser chance of problems. (but there is still always a chance of problems and instead of being in the lumbar spine the shunt would sit in the ventricle in the brain and be threaded down to the peritoneal cavity.).
First we are going to wait a couple days while in the hospital and re-assess and make a decision about her re-operating and placing one of a couple different types of LP valve she has researched w/several companies. She spoke about the possibility of the couple different types of LP valves she had researched after contacting the LP shunt companies one of these being a strata I believe. In the morning she planned to srop by and we will talk further. Sge laid out several options this morning if this valve didnt work and including that she had called 2 different LP shunt companies to inquire about their valves for this type of shunt and get opinions on what might work better w/in underlying MPS. When she came in tonight we talked for about 15mins and she brought up again these other valves, that she would monitor me for a couple more days and re-assess. She may try a new valve in an surgery if we go that route while still in this in-patient visit. If that vlave wouldnt work she mentioned we could do every few day shunt taps to draw off fluid in her office while we decided on what we where going to do to get a good result. She talked about this being imperfect and not wanting to have me come in to see her so often but it would give us a little time and in the mean time provide some relief for me. (not only the headaches but also the nausea and autonomic issues like blood sugar issues, BP, breathing affects, etc.
I will post after I talk to my neurosurgeon again tomorrow - she thought about noon. Her resident/fellow is also very nice so has been fine.
Prayers for peace and comfort to those friends of mine also dealing with MPS challenges and to those suffering in silence I pray you to find a dr who acts as your champion!
The idea of a VP shunt placement and just overall these further surgeries is not high on my like list but while the idea is not appealing in the least I am eternally grateful to this dr for believing me and for seeing the little signs in me that so many providers missed and cont'ing to believe me and for wanting to help me and do all she can. Every patient should have providers like this one!!!