So there are a few things to write about which i'll try to get to this all tonight vs coming back in a different post - my neice is here til weds after picking her up (she lives about an hour from where I do) earlier today so I am trying to get to bed a little earlier tonight. The CT scan took place on thurs at UW after much going back and forth between my insur. and the hospital radiology dept. (which according to my case manager the prior auth wasnt that difficult it seems instead that something kept getting mixed up.) Once this was approved the scan which as most know was relatively quick - the barium part which is what highlights the small colon, intestine, etc. not so much. I probably wont know that result until early next week which will also be when I know if the surgery stays scheduled for the 9th or if we need the general surgeon involved. The plan if the general surgeon does have to be involved would be for my neurosurgeon to revise the shunt from the front-peritoneal incision and work her way back testing each component. This technically is more difficult in LP shunts so my neurosurgeon is hoping she will be able to enter from the lumbar incision and test the shunt tubing back to side, etc ruling in or out each portion.
Today after picking my niece up in Port Washington we headed down to milw (wauwatosa) to my Internal med. drs office for the pre-op physical which was at 3. (it has been an insanely busy week of driving and to boot after I got back from madison yesterday I detoured to my parents to have my dad double check my breaks as they sounded terrible - he is getting the parts for those to be replaced.) So anyways the pre-op which was with my Internal Med drs Nurse Practicioner whom also is very familiar with my care and providers and also very nice. She asked some questions about this surgery and did we think it was really the shunt causing the headaches given the need for another revision to which I explained the failure rate of shunts in the first 6 months to 1 year is abysmally low (something like 40-60%) and how with Dr.Bragg drawing off the fluid she did last week it was like a light switch just that easy to have no headaches again. She asked how I knew the surgery had worked in the first place and I explained how multiple of my drs both ones who see me frequently due to the way it is set upand one or two who see me only on occassion commented just how much they could tell a difference and not in like physical appearance but more in my eyes and how I just appeared to them much more relaxed overall, appeared as if I was less tired and how my eyes especially just looked so much more alert and like I wasnt guarded because of these headaches. How much of the autonomic stuff improved, the breathing issues though cardiac related also was improved and how when the headaches began to come back again at first I literally would reach up as if to remove a tight headband not realizing it was the headaches and that I wasnt wearing a headband and the H/A's only worsened from there over the past week and a 1/2. Towards the end of the appt she commented that she thought it might be a good idea to set up regular appts with either my internal med dr or her and that she was going to talk to my dr (they work together on pts or atleast my care) about having me see one of them every 6 weeks because so much is and has been going on and so they are in the loop and can help coord where needed. She also commented and I couldnt agree more that we both hope my neurosurgeons nurse never leaves that office bc we both really think she is amazing at dealing with all of my outside providers and coord everything when it comes to these surgeries. (and seriously she is one of the best nurses ive dealt with and extraordinarily kind to boot which is always a nice trait to have in the providers you work with! While my neuro-endocrine dr is aware of this next shunt revision my NP was going to double make sure all the needed orders for the pre and post surgery solu-cortef where in place.
Lastly the UW Urology dept called today about calling in an antibiotic to take prior to thurs urodynamic testing due to the self-cathing thankfully this will just be 2 days prior and I will also stop the oxybutynin 24 hrs before.
I'll update again when there is something to update on!
Tomorrow not only will my niece (11y/old) be here but my 9y old and 5 y old nephews will as well so it ought to be a 3 ring circus at auntie erica's apt! :) The neighbors will get their due noise payback perhaps! (joking of course)
Erica
ps I apologize for any sp or grammar errors I didnt go back and sp check this!
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