The latest CT scan showed no change in the size of the subdural hematoma, but surgery will be required to remove the blood that is there. I have found quite a bit of information on line about managing this type of chronic subdural hematoma with continued recurrence. There is no "best practice" or specific protocol, especially when the client is asymptomatic - Dave doesn't have blurred vision, headaches, weakness on one side. The recurrence is most likely because of the cerebral atrophy he has - there is room for fluid to build up. His brain still has compression, he still has some midline shift - which seems it should be causing neurological problems, but none are apparent. With the atrophy, the bridging veins to the dura mater have been stretched and are more likely to tear. I'm wondering if the compression has done the same thing and perhaps stretched and torn other veins. Plus, how long can a brain stay compressed with no injury? These are some of the questions I haven't been able to find answers to.
The neurosurgeon agreed to watch his condition for two weeks and do another CT scan. This is a more conservative approach then having surgery right away. In the mean time, Dave can resume light activities and go back to exercising. I asked about waiting for two weeks because of several reasons. If the size of the hematoma is the same as it was after his surgery and is not causing any new neurological problems, I want to see if the size is increased over two more weeks where he is resuming more activity. If it does show increased size, my assumption would be that increased activity makes it bleed more. And it will be more likely to happen again after the next surgery. If the size remains the same, I feel like it means perhaps the torn vein is healing and recovery can happen - maybe this would be the last surgery! I feel I can't plan more then two weeks at a time because of too many unknowns. This is my new normal - day to day - never knowing what is going to happen. I am to watch for headaches, or weakness on his right side, as the subdural hematoma is in the left side of his skull. Should I see any symptoms, I'll call the neurosurgeon's office and he'll probably have surgery right away. For now, I'm assuming it will be the a couple of days after our next CT scan Feb. 11.
Somehow this is all starting to settle in and not causing me to panic anymore. I'm getting used to it. I'm feeling more confident with the information I've been able to find, and the realization that the more informed I am, the more I can advocate for Dave to get the care he needs.
We met with Dr. B today. It has now been six months since diagnosis. She spent over an hour with us. She is always so generous with her time and we never feel we are being rushed out of there. Dave completed the SAGE test in the waiting room. This is a tool developed by OSU to gauge dementia and cognitive decline. His score was significantly lower this time - a 9 vs 15 at his last visit. It is hard to know how much of the decline is the FTD and how much is the fall and the chronic subdural hematoma recurrence. So in fact he may not be asymptomatic with regard to the hematoma. I was very aware of the trouble he was having completing the paperwork, when in the past it has not been much of a challenge. It was the first definitive indication of something - just not certain of what. Dr. B indicated a second opinion regarding the subdural hematoma management was not out of line, especially when dealing with the brain. She works with three neurosurgeons right there in her group and will ask them to take a look at the CT scans. It seems it would be practical to go with one of the neurosurgeons in her office as communication between the two would be instantaneous. Though the FTD and the management of the CSDH are two different issues, they certainly are intertwined. It would also be comfortable as we really like and trust Dr. B. The other neurologist involved in this, Dr. L, is a seizure specialist. Dr. B and she are in the same practice also, though at different locations. They know each other well, so that lends itself to coordination of care on these matters. It sounds like this CSDH will resolve itself. Our plan for now is to see Dr. G, the neurosurgeon who has done the previous surgeries, next Wednesday for another CT scan and go from there unless I hear from Dr. B's office that there are other options.
Dave has gone back to exercising at the senior center three times a week for now. He is only going for half an hour. Once again, when I went to pick him up after the first time, the folks there were so glad to see him! They had sent three cards over the last month, telling him they were thinking of him and to get well soon. I got teary eyes. I am so thankful for them all. They accept him as he is, and enjoy his talking in Spanish - he has Spanish names for all of them - talks loud - has them all laughing and enjoying themselves while they exercise. It is great! We met with an attorney to take care of power of attorney, healthcare power of attorney, and wills. I'm looking into a grant available through our county for caregivers, hoping to get Dave into adult day care maybe two days a week to see how that goes. I'm going back to work tomorrow, at least part time for now, as the afternoons are still spent helping take care of my dad. So the rest of this week will feel a little more routine. I work just a few minutes from home, so if Dave has any troubles, he can easily call me. I'll check on him mid-day, and then be down the street at my dad's. We'll see how this goes - then next week, if he has surgery again, we'll be back to a different routine for a week or so - and then, adjust to a new routine again. I think I'm actually looking forward to getting back to work! I know there's a lot waiting for me - and a few days from now, I'll probably be looking forward to another switcheroo! But I know what's happening tomorrow. I could get used to that.
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