Chapter 24 “Imagination is the only weapon in the war against reality.”

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!!! 

 

Chapter 23 "My dear, here we must run as fast as we can, just to stay in place. And if you wish to go anywhere, you must run twice as fast as that."

Just about six months since diagnosis.  Bumps along the way.  Almost six months since I started this blog.  It has helped me to put thoughts down, to reflect on all of this change in our lives.  Lately it seems to just have served as a journal for the last couple of months as I've navigated new waters and it has strayed from my original ideas of what this blog would be.  I wanted to share my experience with frontotemporal degeneration beginning with diagnosis in the hope that others would find it helpful to them.  I have access to statistics on BlogSpot, showing the number of times my blog is viewed, which posts readers have "clicked" on to read, which countries readers are from, and how my blog is accessed.  I've been pleased to find that the majority of readers are accessing my blog through the Association of Frontotemporal Degeneration website (theaftd.org).  I hope readers are finding this helpful. 

I would appreciate any comments you might have - about this blog, about your experiences with FTD, about any information you think I would find helpful, any tips on how to get through this with a good frame of mind.  I know I'm still early in this journey.  I've found I'm growing weary of it with the new developments from the chronic subdural hematomas.  I don't seem to have the time to stop and take stock of life, to remember that today is the best day Dave is going to have, to take advantage of the knowledge and make today count.  I'm spending time researching, on the phone with the insurance company and all the doctors and groups that we're getting bills from now, arguing that the fact the doctor on the neuro critical care floor for two days during Dave's second hospitalization isn't on our insurance plan should be overridden by the fact the hospital is on our plan - but this particular doctor won't accept the allowed amount from our insurance company, and is requesting full payment for the amount billed - which sets me to raging about the greed of this doctor, and the fact that the hospital shouldn't contract with a group of doctors that won't accept the allowed amount from insurance companies, especially when a person has no control when entering the hospital of knowing who might be on for the day.  Medical bills are mounting from three hospitalizations, and we have another one coming up.  I get to wondering about the third hospitalization and if there were any doctors that time that weren't on our insurance, and what about this next hospitalization?  I am angry about the lack of control over any of this - too many things are out of my control right now.  I worry about my job, and the fact my family medical leave is running out soon - what do I do if/when Dave has more issues?  I'm the only breadwinner.  I worry about the financial aspect of his current health issues, as well as the long term prognosis of what seems to me to be a constant recurrence of the subdural hematoma.  Does all this make the prognosis for the FTD worse?  Shorten his life?  No definitive answers, I know.  Just some of the myriad of thoughts circling through my brain.  Thinking for two, since that very part of Dave's brain just doesn't function well.

And yet, just getting this all down some how brings into perspective how much worse this could be.  We have insurance, we have a roof over our heads and food on the table.  I have family who are supporting me through all this, and a wonderful advocate in our neurologist, helping coordinate care and helping us make decisions.  I still wish to run away some times.  At a time when many turn to their faith for strength, I am feeling angry.  I know bad things happen to good people, and that God isn't responsible for all this.  But I'm wallowing right now.  I pray, but it doesn't bring me peace at this time.  I need to get past the next couple of weeks, get Dave as healthy as he can be, get back to work, get back to some kind of more normal.  Nothing about right now seems normal, or I guess I just can't accept it might be my new normal.  It can't be how it's going to be from here on out.  So I have to keep telling myself it could be worse....it could be worse.  I know this to be true.  I just need to get to the other side of the brain injury problems.  I just need to breathe (I'm realizing I use the word "just" a lot...??).  I know I said 2015 had to be better then 2014.  I'm changing the calendar!  I'm picking June as the new target for this being behind us.

I want to get back to making this blog about positive things - about proper perspective - about enjoying this life - to raise awareness of FTD.  I need to get out from under the little rain cloud that seems to be following me!  Because life IS good.  We had an MRI today, a CT scan tomorrow, and a meeting with the neurosurgeon to schedule our next surgery!  My "to do" list is different then most - but certainly very interesting and challenging!  Keeps me on my toes.

Chapter 22 "How puzzling all these changes are! I'm never sure what I'm going to be, from one minute to another."

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. 

Quick addendum to Chapter 21

Dave was released from the hospital on Sunday.  The CT scan on Saturday showed more fluid accumulation since the Friday surgery - but just a small amount.  CT Sunday morning showed the same accumulation - no increase in volume.  There is no clear indication of where we go from here.  Dave's brain has a midline shift to the right - 4mm compared to 14 mm with the previous subdural hematomas.  His brain has still not expanded to fill the space in the left side of his brain, and there appears to be a small pocket of air.  We have a follow up CT scan in nine days, and will see the neurosurgeon at that time.  Two weeks from today we have our six month checkup with our neurologist.  By then, I hope to have a picture of what the near future looks like.  I want to know how much the brain atrophy from the FTD is contributing to this continued bleed, and how these last few weeks and the current state of his brain might exacerbate his FTD.  Maybe it will be stable by next week.  I can only hope!  But I have a feeling there will be no clear answers. 

This recovery for Dave is tougher - he has some pain because of the location of the latest burr hole - his seizure medication has been changed to Keppra from Dilantin.  He's pretty sleepy throughout the day.  Moving very slowly.  Watching everything he does so as not to exert any undue pressure on the brain - no bending over, no lifting or pushing or pulling.  Just sitting.  Better today then yesterday, but still seeming about three steps back from where he was. 

Plan to post in two weeks after the visit with the neurologist, who I'm hoping will pull all this together for us so we can have a roadmap for the next month or two, bumpy as it might be, and filled with detours! 

Chapter 21 Back to the tea party - AGAIN!

Dave had his follow up appointment on Wednesday with the neurosurgeon.  His CT scan showed another subdural hematoma on the left side.  Another surgery.  Today he had a third burr hole drilled to remove this one.  Brief consultation with the doctor afterwards - all went well - the surgery actually only took 22 minutes.  That to me is amazing.  The doctor did indicate that it is likely he'll need this again.....said we would discuss later.  He has another CT scan tomorrow.  Then we'll know more.

While the initial fall and seizures were separate from his FTDbv, this continued problem appears to be directly related to the brain atrophy.  The neurosurgeon confirmed his atrophy is pretty severe.  With all the room in there, the original bleed from Nov. 22 continues to drip.  I wonder what this means - this can't be good for a compromised brain to be subjected to this pressure, to be pushed around in the skull to one side or the other, to be under anesthesia two times now in less then three weeks, and the possibility of more.  He now has three holes in his head - and it would seem that these surgeries must be somewhat traumatic to the brain in and of themselves. 

I've read recent articles on studies done regarding prognosis for those presenting with significant atrophy at the time of diagnosis.  I don't know how the studies' ratings of "significant" compare with Dave's significant atrophy.  Prognosis in the studies showed five years survival.  In my mind, I wonder how long this can go on if this chronic subdural hematoma situation continues and how it might skew Dave's prognosis.

On the other hand, the only definitive diagnosis of FTD happens with biopsy at death.  So all this worrying and wondering could be for nothing, right?  He could have something else.  And it's taken fourteen years to get to this point.  I have contacted Dave's neurologist that diagnosed the FTD to make sure she knows about the last two months because we have an appointment with her Feb. 2, and I have a loooooooong list of questions!

It is what it is. 

More later. 

It Is What It Is - Frontotemporal Degeneration...

Chapter 20 The after party

Dave is home from the hospital.  He was released on Friday afternoon.  The drains were removed Friday morning.  He's sporting a new hairstyle - a bald head with a little stubble - some railroad tracks made of staples on each side - and his full beard.  He wears it well! 

As usual (sad I would choose that word to use!), we have follow up appointments.  One this week to get his blood taken to check his Dilantin levels, one next week with our primary care physician, and one with the neurosurgeon for a CT scan, get his staples removed, and find out if the bleed has clotted.  No CT scan was done before he left the hospital - so I'm a little nervous.  But I guess everything that could be drained had been drained.  He is to wear a shower cap when showering to keep his wounds dry.  I found one in a lovely polka dot pattern.

As usual (there's that word again!) he could not "take it easy."  Was concerned about the towels not being done on Wednesday - I did them on Thursday!  Did the trash and recycling make it out?  He was checking the water in the Christmas tree, going up and down stairs, picking things up, throwing things away - including my winning ($3.00!) scratch lottery ticket and receipts from Christmas presents that I need.  He did not like being told he needed to be careful.  Saturday evening, he finally  sat for awhile in a chair - he said he could feel something in his brain - not pain - just something pushing, or some pressure - I think it scared him a little - so I'm a little concerned about what might be going on.  I tend to wish the follow up appointments would be sooner - at the same time, I don't want to hear any bad news.  It was mentioned that his bleed may not clot and he may need to have the fluid drained periodically.  I don't think I even want to know what that entails unless I need to know.  Apparently, with brain shrinkage - which he definitely has - the veins and vessels in the brain kind of stretch and can thin because they are stretching across open spaces and are more likely to tear.  He kept falling asleep in a chair on Sunday - his handheld game of Solitaire that he plays each and every day until he wins kept slipping out of his hands and falling to the floor.

It's now been almost a week since he got out.  Things seem to be going well.  Next Wednesday I'm hoping he gets a clean bill of health for now.

I've been doing some more research on FTD, particularly the behavior variant type.  I'm now anxious for our regular follow up with our neurologist that diagnosed this disease.  I can't believe we're coming up on six months.  I notified her office of these two hospitalizations so she can review the record before our visit.  These incidents seem significant enough that I'm wondering how they will impact his main diagnosis of frontotemporal degeneration.  Which brings to mind another issue on his discharge papers from the hospital - his first set of discharge papers indicated FTD as a diagnosis along with the other issues from the fall.  His second set of discharge papers DID NOT include it.  In my mind, it is a significant enough medical issue that it should always be noted at the time of discharge so it can be considered in the overall discharge instructions and follow up care!  If it was me being discharged a second hospitalization, one could make the assumption that I understand what I need to do to take care of myself.  If that diagnosis is not noted for all members of a hospital care team to see, how can appropriate discharge planning take place for an individual with significant cognitive problems?  It is a challenging state of affairs.  This is probably repeating myself, but having been home with Dave for a good part of the last month and a half, I have noticed the depth of his deficits.  I've seen more irritability - but that is probably in part due to two hospitalizations.  There are little things - individually not much - but together - I don't know.  Is it progression of the disease?  Is it because his brain has been through the ringer the past month?  Literally squished and pushed off center by a build up of blood and fluid?  I don't know.  We need the clean report on his CT and get past all this, and see what life is like a couple of months from now, all the while trying to make the best of today because he's the best he'll be right now. 

I saw a great half an hour special called It Is What It Is - about FTD - interviews with four families and their struggles.  There were so many moments in that short documentary that I could identify with - it was heart wrenching, but again, so comforting to know there are others out there going through this same thing, sharing this same experience.  It is available on You Tube.  I'm going to try to attach it to this blog for those who wish to watch it.

Along with all this, my dad is still hanging in there.  I am blessed to have been able to spend afternoons with him, helping take "care" of him.  It has been good.  While I don't know how long he has - it's been quality time and I wouldn't trade it for anything. 

More later.