Monday, July 9, 2012
A few new things; new update.
This is another one of those "started it a few days ago (last thurs) and finishing it now" posts. :)
I saw Dr.Bragg (her NP whom I also really like as Dr.bragg had an emergency surgery) last thurs and since Dr.Bragg was in surgery she gave the ok to Sue and Emily, the NP's to reset my shunt which re reset the LP shunt back down to 1.0. I think it has made a difference though it is a little hard to tell in the mornings as those are still not great (which is weird bc with the external drain for instance mornings where not a problem nor where they with other 'revisions'. Weird I say! Anyways but the rest of the day has been improved, not perfect but id say a 6 down to a 2-3 which i'll take and just really hope it lasts and doesnt re-clog or intermittently clog or whatever it was doing before we did all these serial shunt taps and re-programmed it to 1.5 or 1 1/2 weeks or so. I also gained about bit of weight back in the past week so thats a good sign as from the point of being released from the hospital just over a month ago to early last week I had gained (the month in the hospital) about 10 pds to 123 and then by last week was down to 106 and now back to 115 - same scale so I know it wasnt a fluke. I 1/2 joke the best weight loss program might be a shunt for anyone actually trying to lose weight.. :)
I saw Pain Management dr last week and she commented how she'd really like to do some kind of intervention like RFA (radio refrequency ablation) but had concerns with my having had the Central Nervous System (CNS) infection only 6 months-ish ago as well as the placement of the 2nd shunt all the way up in to the thoracic spine and the decompression (laminectomy) surgeries in my lumbar spine so she didnt feel comfortable doing those interventions. Instead (and I am ok with not doing anything invasive!) we are tweaking the meds starting with the lyrica dose and upped the butrans patch dose in plan to be able to drop the MSIR dose and so far is helping. We may switch or add a neuro-modulator (family that lyrica is, works on nerve signals) at soem point but will see at end of month appt.
I went and picked up (about an hour drive - thank heavens I like driving, find it somewhat peaceful is all I can say!) and faxed the PMR and Pain management records on fri (and they didnt get them, grr for what I paid!) to my Insur Case Man. to see if Deans Pain docs want to take my case (pray they dont!) and also found out my Pain Mngmt drs office is re-submitting to DHP my insurance carrier to try and become an in-network plan provider which would mean I could stay with her. When I first switched to DHP her office/insurance person tried to get in with Dean but they told Dr.B's office they werent accepting new plan providers at the time (weird, hey!?) - I appreciate that my Pain dr is trying to keep me under her care - and that she cares that much bc she is one of my best providers! We have 3 months to work things out. I still would need a PMR person for the botox so the recommended person there is one who my neurosurgeon worked with a bit while I was in-pt as apparently Deans PMR doc doesnt do botox injections according to her nurse. We will see.
This week I see the 1st of the 2 potential PCP's so im curious how that will go - I see the other one in beginning of August which is when I set up the appt for due to a bit of a crazy schedule this month. (though august we are doing a family day and I also agreed to watch my nephew 1/2 a dozen days so will probably take him to the zoo or something atleast one of those days. I emailed with both of these PCP's so I hope the appts go well - although if I like both drs im unsure which i'll chose. The Family Practice dr is closer but it depends on their approaches I guess and really it is mostly pre-op stuff and paperwork (god help em' maybe they should instead run for the hills?!) =)
Otherwise for the 4th I spent the day down by my brother, sis-in-law and niece and we took the boat out on Lake Michigan for the fireworks which was pretty awesome and a nice day all around. I am headed down there again in 2 weekends for another day called 'Fish Day' which is a parade, classic car show on the bluff, carnival stuff, more fireworks, etc. Always a fun day. They also came up to my parents sun and so along with them and my older nephew who just turned 10 on the 7th we swam and had more fun.
Tomorrow (tues) is the first new-potenital PCP appt and before hand having lunch with a good friend in Madison which will be fun and nice as we've been trying to match our schedules for several months now!
'Work' has been going well and love how fexible it is and must admit the extra money is nice - I used part of the last check to buy a portable dishwasher which should be here. I also love how its stuff that ultimately will help me and is just all around interesting! Perfect in many ways for a job for someone in my shoes! :)
I'll update soon or try to anyways!