Neurosurgery surgery date

I talked to the Peds Neurosurgeons nurse this afternoon and she relayed that this Nsg and my adult Nsg both felt they could handle my care and outlined what both agreed was probably a good plan for moving fwd. So the plan will be that I will see the Peds Nsg as my Primary neurosurgeon and then the adult Nsg will be there for back up if something should change or should the Peds Nsg not be available and I need care in the future.

The plan is to do surgery on May 31st to directly explore the shunt I have now throughout direct visualization and test it's flow characteristic, etc. She is planning on testing the shunt and probably revising with an additional potential ICP monitoring afterwards. I am to plan on being in-patient for 3-5 days and one of the things we had talked about when I first saw this dr was that part of the problem might be that when I stand up due to the type of shunt I have it is able to flow properly and CSF (cerebrospinal fluid) is able to build up enough pressure and get down to the shunt which is located at L3-L4 in my lumbar spine. But then when I am laying down bc LP shunts have such a smaller cathether to carry the built up fluid and possibly due to spine issues I have or just in general due to gravity fluid may not be able to be building up enough force/pressure to flow adequately through the shunt and thus I get the headaches at night worse. The potential fizes for this are 1. a VP shunt or 2. add an additional device to the LP shunt that regulates horizontal/vertical positioning. This would regulate fluid regardless of being upright or laying down. We all agree that the shunt is working to some extent just that we think there is a problem with the dynamics of flow either due to the positioning/gravity issue or due to just plain some form of blockage in the shunt (which has happened in different ways in my other 2 shunt revisions).

I have a physical scheduled tomorrow (the nurse just called today but asked if I could get the physical done as soon as possible) so that is at 3:00 on tues with my Internal med-primary drs NP who is very familiar with my care. I also will be faxing anesthesia records to this drs office (Nsg) as ive not actually had any surgeries done at UWHC and they want to get an idea of what is needed. Anesthesia is often the most difficult part of any surgery I have and especially when general anesthetic is required as I have very narrowed airway (grade 4 of possible 4 direct visualtization by a former Anesthesiologist I had who wrote down the details for me) which requires special instruments to get the breathing tube in. I dont have the surgery time yet but will keep everyone updated on all these details.

It just so happens I see my Cardiologist next week for a 6 month fup so I guess that is good timing - please pray that the atrial enlargement I have had which has gotten progressively worse over the last year will not have worsened and that the valve issues which had also worsened a fair deal will also not have worsened. I am currently on a calcium channel blocker and lasix daily and really, REALLY do not want to have to go on to a beta blocker which I know is what my cardiologist will do/push for if things havent improved/stayed the same. It was all I could do to get him to agree to let me try a CCB for 6 months instead of trying another beta blocker (I had been on toprol xl) to see if we could get improvements in breathing (due to atrial enlargement and possible pulmonary venous hypertension) and to see if it would keep the valve issues from worsening. BB's and myself are not friends! (Ive always felt taking a medication that has many side effects such as unending fatigue to mitigate side effects from a disease process is pretty ludicrous but also understand that sometimes it just requires playing around of a class of meds to find a good match - hopefully it wont come to that as I know 110% my Cardiol will not hesitate to stop the CCB - diltiazem CR if there is further issue as he was very against doing this class of med or the Ace inhibitor class of meds to begin with.


This past sat my uncle passed away from metastasized cancer and complications from a stroke suffered last summer after a TBI and fall. The funeral will be this fri nad burial on sat - this would be my Dad's sister husband and while we didnt grow up close to this particular relative due to distance and really just differences in family style I guess I ask for prayers for my uncles family as his wife and kids are still good people who are mourning a huge loss.

All for now - God Bless,

Erica