Why? What? How?

I’ve been dreading this blog post. Our visit this afternoon with the neurosurgeon was rough, confusing and sad, but for various and puzzling reasons. It’s been several hours since we left his office and we still are trying to wrap our heads around it all. Not sure where to start. 

Let me begin with a grateful heart. I was able to go to the appointment with my bride, which was a worry and question yesterday, even without COVID. I can’t imagine how it would have gone had I not been able to be there. 

After the drive-thru COVID test, we were actually able to come back to the house for a bit of a rest. Liza laid down on the couch and I wrote the previous post. Then back in the car and up two different elevators, temp check in between, to a dizzyingly gorgeous neurosurgery reception area - complete with a massive LED screen of slow motion jellyfish. Not making that up. Multiple pages of forms, meeting with a nice registration guy and then we were quickly welcomed back to an exam room. Rachel, the first nurse took some vitals and asked some opening questions. We got Liza comfortable by lowering the lights and making the exam chair as flat as possible. All of this travel and walking is way more than Liza has had in a long time. 

After not a short wait, Dr. Schievink and his PA, Mrs. Cruz, walking in and introduced themselves. Without being able to see anyone’s mouth and nose, it’s hard to gauge a person with one third of a face. But he quickly sat down and started asking questions. We started with the first Arnold-Chiari decompression surgery in 2007, how Liza felt before, what the first symptoms were, how she felt after, and so on. Second surgery. Third surgery. We’ve been down this road many times and at this point, I thought things were tracking well. Normal at least. 

Then we discussed the happenings of the last six months or so. This includes our helpful Houston neurologist, Dr. Burish, the MRI and CSF flow study he ordered at the end of 2019 and then the CT myelogram and cisternogram he ordered in February 2020. By way of recap, the report of the latter test, designed to specifically look for CSF leaks, got to Dr. Burish within hours. The same day he actually called Liza and later spoke to her mother with news he considered to be exciting. Without quoting him, he reported that they had discovered numerous and significant leaks in her CSF which he considered to be a major contributing factor to Liza’s chronic headache. This is when he recommended we come see Dr. Schievink. A couple of weeks later, after getting connected to the team here in LA, Liza and I spoke to Dr. Schievink on the phone and he confirmed the tests, the reported leaks and gave us his potential four-day plan, including tests and blood patches (plural) and potentially a blood patch with some sort of glue included. That is what we’ve been hanging on. That is why we are here now. 

So back to our doctor visitor today. This is where the confusion begins. What we have thought were leaks, from several verbal doctor reports and written radiology reports that used that term, the Doc here thinks are pooled CSF from dilations in the nerve sheaves that come out of the thecal sac from the spinal cord. This is where the room began to spin a bit and things slowed down. This was not what we expected to hear. I opened up my inch-and-a-half thick medical file for Liza and pulled out the radiology report that revealed and even measured the leaked CSF. The Doc looked at it but then redoubled his belief that the reality was different. Again, we’ve been going over this for hours now, after this meeting, and it still is foggy and confusing. I was struggling to ask direct questions without seeming rude that I was questioning his medical authority. That was really difficult. 

Another change and challenge is with Liza’s testing and the plan forward. The MRI yesterday, the 2.5 hour ordeal with and without IV contrast, seemed to be straightforward. Liza has had probably twenty before. The plan we had in our mind from our previous conversations and plans was: Monday-MRI, Tuesday-Doc appointment; Wednesday-CT myelogram; Thursday-blood patches begin. There was even talk of more specific procedures for microvascular repair, although we didn't know exactly how that would happen. But this doesn’t seem to be the case. This has been hard to accept and understand. 

Here’s what we were told and what we are struggling with the most. The test Liza had yesterday was apparently an MRI and myelogram, but done without contrast in her spine. She will not have another or any other test tomorrow. The plan is one blood patch on Thursday and that’s it. She is not supposed to travel for several days afterward. She is supposed to wait for at least a month to see if it takes. 

Dr. Schievink gave us several opportunities to ask questions and we both did, but there was a large amount of baffling silence. We just kept looking at each other. Uh. Umm. Some silence. We tried to discuss the difference between our original plan, a plan which came from him, and the current plan but it didn’t seem to take. The thought did cross my mind that I should probably state Liza’s name and birthdate - at the end of the meeting - to make sure he knew who he was talking to. I didn’t do that.
He politely said we would be contacted tomorrow about the blood patch procedure on Thursday and then he said goodbye, stood up and he and his PA, who was furiously and silently typing the whole time, exited the room leaving the door open behind him. Liza sat up, the tears beginning to flow because she felt like she was losing hope. We walked out, numb and confused. I had tears in my eyes too. Since then we’ve been trying to wrap our minds around what happened. I went back through all of Liza’s medical file with a highlighter, rummaged through our hand written notes from phone calls and discussed them all together. More tears. More confusion. 

So, my plan is to do some more phone networking tomorrow morning to try to get to the bottom of some of this. I’ve also requested another meeting or phone call with Dr. Schievink tomorrow. 

To close I want to thank you all for your fervent and persistent prayers. We are breathing them in here, real time. Thank you. I decided to write this post frankly, speaking honestly about our feelings today. Please translate them into more prayers, specifically for Liza’s heart and for her care. We have not given up hope for relief. We also know that this is just one step. It’s always been one step - to address her debilitating headaches. Once that happens, and we are still holding on to that hope and solution, we still have to address the neuropathy. We will continue to see full resolution back at home. It seems like we will be there sooner than we thought. 

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