We had our MRI, and our neurologist called us that afternoon with concerns about what was reported. She gave us suggestions on what we might ask the neurosurgeon at our appointment the next day.
We saw the neurosurgeon - I think he was in the office for maybe two minutes - said it was a little smaller, so we would just do a follow up in three months.....I was so surprised by the fact we were not scheduling surgery that I didn't really ask any questions. My bad.
Even though two weeks previously Dave needed surgery that was delayed for two weeks at my request, apparently the hematoma was slightly smaller. That was of course good news - no surgery and the hematoma was getting smaller. But three months seem a long time for any follow up. I contacted our neurologist and gave her the information. I requested the written report from the CT scan be mailed to us. When it came, yes, the radiologist reported a slight decrease in the size of the hematoma, but an increase in the size of the subdural hygroma. To me, that doesn't seem to be the best situation. Will the hygroma go away eventually? In the mean time, there is still compression of the brain between the hematoma and the hygroma, isn't there? And with Dave being able to resume all normal activity, three months seems like a long time for a follow up CT. I guess I thought maybe a month?
This feels like I'm between a rock and a hard place. I'm glad he doesn't need surgery right now - he seemed relieved. But I feel very concerned that he is walking around with this moderate subdural hematoma. I guess there's no pleasing me.
At this point, we are scheduling a second opinion to have another neurosurgeon who Dr. B recommended to take a look at everything and meet with us. We received all of our current neurosurgeon's records, including a copy of a letter he sent to our primary care physician. The interesting thing is the radiologist report from his office on the CT scan mentions different measurements in the size of the subdural hematoma then his letter to our family physician does! The letter mentions a smaller size then the radiologist report. And there is no mention of the hygroma. And this could all be perfectly normal practice in the medical field - these reports are meant for doctors - not me. THUS IS THE DANGER IN BEING AN ARMCHAIR DIAGNOSTICIAN! I don't even know if it means anything - but I've read and researched enough that it all makes me wonder and question. I would probably be better off if I didn't try to figure this all out!
The doctor we have been referred to for a second opinion seems to excel in his communications with families - I will have my questions all prepared, hopefully get all this explained to us, and feel comfortable with the three months til follow up. It's a little crazy the way I ask SO many questions and feel the need to understand all this. But I know in normal circumstances, in a person without brain atrophy, a person would probably be displaying some neurological symptoms and require surgery. In this case, the curse of FTD and his brain atrophy is actually a blessing. I want to understand why Dave isn't having symptoms. What happens with the hygroma? Does it need to be managed? Will the midline shift just stay that way and if so, are there any long term effects from it? Will his brain re-expand? Is it ok if it doesn't? Is three months the normal course of follow up?
I'm looking forward to talking with someone willing to answer my questions and explain all this to me! I can be a pest, I know. But all for a good reason.
Yesterday was a special day for us - my son and his wife found out the gender of their baby they are expecting in July. Dave and I went over to my dad's to Skype with my son - friends of theirs were having a "gender reveal" party. My dad thought it sounded like a fun idea, and I wanted him to get to see what his latest great grandchild will be! We got all set up and were anxiously waiting for Michael and Jordyn to open the box that would hold either blue or pink balloons! My dad asked Dave if he was excited to be a grandpa, and whether he thought it would be a boy or girl. It hurt my heart to hear Dave's flat response of "yes, I guess so." While I know in my heart that deep in his brain somewhere and certainly in his heart and soul, he is excited to be a grandpa; he just can't express any kind of emotion. There was no excitement, no anticipation of the reveal of boy or girl, nothing. It is the tiny moments like that, that happen in a day, moments that should evoke responses of joy and love and excitement - that don't - that pick away at me and remind me of how much I miss him and how he used to be. I miss sharing these big moments with someone. Yes, my sisters and brothers all reach out. But that's not the same. Not the same as lying in bed at night and talking about how much fun it will be - how great of grandparents we'll be - how we'll make a nuisance of ourselves trying to visit this first grandchild. It just isn't going to happen that way. And maybe that's not how it would be happening if all was well with Dave! Maybe I'm romanticizing all this. I just don't know. It has been so long since we talked about these kinds of things, since I've had a real partner - this disease has been affecting him for at least fourteen years. I'm still adjusting to being "alone", but not really by myself.
I don't need any time to adjust to being a grandma in a few months! I imagine it will be such fun, and something to look forward to on some of my darker days - a bright star in the future. Twinkle, twinkle, little star - how I wonder what you are - it's a boy!!!
No comments:
Post a Comment