Liza enjoyed mediocre sleep last night, about what she’s used to. There was some sharp pain in her back when she rolled over and adjusted herself, but this is to be expected after a blood patch. This morning she is laying on the couch and has had a cup of coffee, has iced her back and is just trying to relax. She still has significant pressure in her head, which is disheartening, but we are trying to be hopeful for positive short and long term affect.
The outpouring of your consistent and persevering prayers are definitely having effect. We cannot thank you enough.
We are feeling more resolution about relationships and communication with the doctor here, which is good. Everyone else we’ve encountered from OR nurses and doctors, PACU nurses, receptionists, even several janitors I spoke to yesterday, has been absolutely amazing. Alexis and Lucille took care of Liza yesterday for her almost seven hours in the PACU and she loved them. They were kind, attentive and gentle.
My phone call with Dr. Schievink yesterday was really good, better and better the more we think about it. The more distance we gain from Tuesdays meeting, the more I think the shock of it all was about our expectations. We’ve been trying to figure out how we built those expectations between February and this Tuesday. We definitely had clear words from doctors (both in Houston and here), clear radiology reports, clear terms shared and re-shared. But I think we also migrated in some schedule expectations shared by schedulers and receptionist sharing “typical” or “possible” timelines. Speaking for myself, I think all of these became one, as you can probably see in my original posts here.
That said, God has definitely been soothing some of that pain. I was able to ask specific questions through an email patient portal about the MRI-myelogram and a potential plan forward. The responses were direct, brief and helpful. They help clarify the details and insight we were missing on Tuesday.
There is such a thing as an MRI myelogram. This test seems to be a specialty here, which is again, why we came. The contrast for a MRI myelogram is injected into the veins, not the spinal cord through a lumbar puncture. This, of course, would be counterproductive, making another hole where they are trying to fix holes. The myelogram portion of the test is generated using a computer software that creates a 3D rendering of the thecal sac, the sac that contains the spinal cord and CSF.
Again, what Dr. Schievink seems to think, confirmed on the phone with me yesterday, that instead of “leaks” or “holes” like we previously thought, the previous tests in February showed significant accumulation of CSF, which he thinks are coming from dilated nerve roots - where the nerve branches normally come out of the thecal sac. There is also talk and speculation of a venous fistula, which is a vein that sucks spinal fluid from the nerve root, thereby causing leakage of CSF outside the thecal sac.
Hope that clears up some of the details. Even for us, this is an ongoing education.
As far as the plan forward from here, the first step is done - a blood patch. In fact, Dr. S told me on the phone yesterday that he considers this Liza’s first blood patch, because the one she received in Houston in February was only 20cc and done primarily as a fix to the lumbar puncture for the CT myelogram. This one was 40cc of blood. So now we wait and see how this one affects Liza’s pain and intracranial pressure, which we suspect is low.
If this patch doesn’t “take” or help, which can take a month to determine long term, the next step is another blood patch. As of now, if we have to do that Liza would like to come back here to do so, which is another sign of God’s redemption and reconciliation of the shock of earlier this week - for all of us. It’s possible to even try a third, although we are hoping and praying that neither the second or third is necessary. After that, we could consider more specialized testing available here at Cedars Sinai, which is why our Houston neurologist recommended this hospital and this doctor in the first place. These tests could explore the possible fistula and other issues. In addition to that, Liza has had a persistent difficulty in her right ear - feeling great liquid pressure and even an eardrum rupture at one point. An ENT in Houston didn’t seem to find anything or take it very seriously, but we suspect that this is somehow related and potentially connected to CSF leakage somehow. We need to explore this as well.
So, we have take a step. We are focused on recovery and potential good signs from this step. As of now, we will lay low here throughout the weekend and head back home early next week, perhaps Monday. Liza has to take it very easy for 8 weeks, which is a long time to not lift things over 5 pounds and not twist her body, etc. We will take it one day at a time, one step at a time. But these medical tests and processes are all a part of a larger story and system, not a fix-all.
So, Friday, here in Beverly Hills, will be mostly horizontal rest for Liza.