Day 7 re-admit, 12 days Post-op, 12 1/2 days in-patient.

Just another quick update, Dr.Bragg (neurosurgeon) stopped by this morning and just a few thigns. She opted to turn the LP shunt up by .5 to 1.5 which is basically in the middle of the pressure settings. She left the P shunt at 1.0. She also opted to leave the PCA pump in place atleast for now as she wants to give my body more time to heal and till we decide what the right step is ie adjusting the shunt settings or re-placing the lumbar-thoracic catheter to a place in the spine with less nerves. We'll turn either shunt up or down if needed though we mroe than likely would turn the VP shunt down if to many headaches as this doesnt directly affect teh nerves in my spine which are causing the radiating and at times excruciating nerve pain in mid and low back + hips and down leg.

She asked if I was having any symptoms like spasms (wich I am) and  I do have twitching like sensations in my legs which can be fairly annoying and not easily able to stop/control. She said she has seen this happen often in others of her patients with other conditions as the nerves re-awaken (I think that was what she said it was from) and we will watch it + try to control it as best as possible.  Otherwise not real idea when i'll get out of here.

My insurance Case Manager, Dr.Bragg and Pharmacy here are working to get my weekly ERT drug approved for here at UW and just a couple hoops to 'jump' through - that needless to say was much like banging my head against a wall thanks to the unit Pharmacisr as  my Primary Insur/Pharmacy benefit  was fantastic about approving it and Dr.Bragg really tried to push for getting it done. Her NP also tried to help with the Pharmacist today and commented how connected I was with so many people - to which I just replied I really thrive on things being done the best they can and being on top of my care which is only the truth! I appreciate as ive said before though that people can see I try hard to get my care well controlled and arranged to make it flow better.

Will try to update again soon,

Erica