Sunday, July 13, 2014

Comfort in a Diagnosis

Robert has declined so quickly this year and had so many different things going on, my head has been spinning.  I just want to find out what’s wrong!
Looks like Robert's appetite is back!
Questions have swirled this year: Why is he getting pneumonia so frequently? Do we use antibiotics when he has bronchitis and risk resistance to them or risk the bronchitis turning into pneumonia? (Side question: Why aren’t there any good choices?) Why does he now sometimes have both urinary and bowel incontinence?  Do we blame the antibiotics or is there something more going on?  What’s with the increased seizures? The irritability? The trouble walking? The sleeping 18 hours a day?  The eating half of what he used to?

We got a possible diagnosis of Cervical Disc Disease with Myelopathy at the last neurology appointment.  Boy, that didn’t sound good.  The neurologist needed an MRI to confirm what he suspected but Robert couldn’t tolerate the MRI.  They decided to do an MRI with anesthesia and wrote a referral for that.

Just a few short days after that, Robert was literally unable to move his legs.  Richard (yes, my husband with the severe and chronic back pain) had to lift Robert from his wheelchair to the bed. The day after that, Robert slept and slept and slept.

Neurology suggested we take him to the ER and get a CT scan done and then the hospital could do the MRI with anesthesia. It was a Tuesday afternoon.  How bad could the ER be?

Oh how naïve I am!

It was a very long day.

Almost as soon as Robert was settled in his hospital room he started throwing up and running a fever off and on.  What in the world?!  Day Program informed me the following day that other consumers had been throwing up lately. Great. Robert has a stomach virus on top of everything else.

And, it’s contagious. Thank you very much.

After several days of waiting for the MRI with anesthesia (we had to wait for the stomach virus to subside, then there was the 4th of July and then a weekend and then a promise of “maybe we’ll do it Monday but for sure Tuesday”).

By late afternoon Tuesday, the neurologist was not hopeful and was as frustrated as the rest of us.  For whatever reason, the hospital does not actually schedule MRIs with anesthesia for people actually admitted to the hospital.  They “squeeze” them in between emergencies and the general public appointments (as in, if I had taken Robert home and then made him an appointment, he probably would have gotten it a lot faster).

The neurologist did what she could and called hospital administrators (the hospital neurologist is not his usual neurologist).  They pulled some strings and we were on our way to the basement of the hospital housing the MRI machine.

It was miles away from his room and I did my best to keep up with the transport team pushing the gurney but I wasn’t about to complain.  We were getting this done and we will be able to actually find out what is wrong!! Woohoo!! 

Until I hear the word “cancelled” on the mikes hanging around the necks of the transport team and they stop cold.

Oh hell no.

We were no more than ten feet from the door leading to the MRI.  This test we have endlessly waited for.  A voice from the room said, “He has hardware in him still.” 


I made my way around the transport people and past the gurney into the MRI room.  Mr. Radiologist, MRI technician and the transport people looked as if they just might call security.

He does not have hardware in him.  The VNS and DBS have been removed.  I was assured by the neurology team at his former hospital – he can have an MRI. 


Mr. Radiologist towered over me but respectfully talked to me, even while I ranted and raved and told him he was flat out wrong.

He insisted there was a piece of the VNS still wrapped around the vagus nerve and that Robert’s nerve could be burned if he had the MRI.

But he’s had an MRI since the equipment was removed! We’ve waited for a freaking week for this test!  This is ridiculous!

All Mr. Radiologist could do was say how sorry he was.  He was not backing down. The transport team was already leaving with Robert, walking back to the room and I just threw up my hands and stormed back right behind them.

As soon as we got to the floor, I looked at the nurse – who was as surprised and disappointed to see us as I was to return – and said, “Call neurology!”

One of the neurologists from Robert’s team showed up within minutes. She was mortified and apologetic and by this time, I was in tears. A moment later, Mr. Radiologist peeked into the room and I dropped my head into my hands. 

I’m sorry I lost it but we need to find out what’s wrong.  We’ve been waiting for a week for this test!  I just can’t take this!

He was very sympathetic but again explained how dangerous it would be for Robert to have the MRI.  I told him I understood and appreciated him coming to the room to further explain his position. 

I get it.  I do.  I just want answers.

The lead neurologist on the team came in a short while later and apologized profusely. She missed the hardware on the CT scan. She should have seen it and didn’t.  She was kicking herself and felt absolutely horrible. She assured me the entire team would learn from this which really was of no comfort to me at that point.

What’s next?

She had a plan and for that, I was grateful. 

She decided the next best test would be a CT scan with myelogram.  

Will this get us a diagnosis?  When can we get this?  Can this happen tomorrow?  It’s already Tuesday night – we have been here a week and Robert is losing function by the minute. 


According to the neurologist, there were two options: Cervical Disc Disease with Myelopathy or Cumulative Traumatic Encephalopathy. The CT scan would be able to confirm or rule out the Cervical Disc Disease.

She made it happen and the next morning preparations were made for the CT scan.  By noon we were done and after waiting an hour for transport (perhaps the story of the lunatic sister was making the rounds and they were drawing straws for the job), we were back in the room waiting for the diagnosis.

The results were that there was some narrowing of the spinal column in the C5/C6 area but there was enough space left that they were comfortable ruling out Cervical Disc Disease.

The neurologist said she thinks all of Robert’s symptoms and decline are a result of Cumulative Traumatic Encephalopathy.  Since all I had was time at the hospital, I had done research on this so asked if it was CTE or CTEM. 


I didn’t really mean to play “stump the neurologist.”

The resident on the team went to the computer to look it up: Cumulative Traumatic Encephameylopathy.

The neurologist confirmed it was CTEM, the slightly more aggressive and serious cousin of CTE.

This is not something that can be fixed and it is extremely serious and progressive (sort of like ALS, aka Lou Gehrig’s disease).

But it is a diagnosis and I find great comfort in knowing what we are dealing with.  While we can’t predict exactly how this will progress in Robert, it makes sense.  His lung muscles are getting weaker, he has a swallow disorder and his leg muscles are unable to get moving. His brain is forgetting to tell his muscles to work.

For me, not knowing what is going on or what to expect is worse than knowing. 

For me, there is comfort in a diagnosis.

For Robert, he knows he is going to get physical therapy for a few weeks at a Skilled Nursing Facility. He knows he is getting meals served to him and he’s looking forward to the activities at the SNF. 

That’s all the comfort he needs for now. 


Unknown said...

Trish, yes there is comfort in a dx, and I'm glad you finally have one. My heart breaks reading about it, and brings tears to my eyes. Sorry, I know that does not help but that is just how much I genuinely care. Robert could not have a better sister or advocate than you. I'm sure you will do whatever is possible to continue to give Robert the best of life. As always you and your family remain in my thoughts, prayers and heart.

Kaye Swain said...

Oh you poor things! What a frustrating time! But so glad you have a diagnosis. I know with other loved ones how frustrating it is waiting for that. Praying things start smoothing out a bit for y'all!

Anonymous said...

I'm so sorry you had to go through that for a diagnosis. Going to the emergency dept is often a long drawn out experience (people who think otherwise are not going there for a chronic condition) and hospital stays and in patient testing is certainly not setup to aid the patient. Things have to be bad before we go there. I think radiology is used to all kinds of people, they always seem surprised we're so calm, we know the complete drill, but then they get it if they see us a few days/weeks later, and then again... docs are also surprised I squawk if they suggest an MRI, it is not completely contra indicated, just has to be worth a potential brain surgery because something could break, usually they aren't aware of the fussy details like the surgeon is, but he clues me in enough to get them to clear it with him, saves everyone a lot of wear and tear. So stressed out family can't be unusual, you did the best you could to get the best outcome for Robert under difficult conditions! I think it is very common to leave that part of the vns in. I hate the cost of learning this kind of issue, the patient suffers for this learning, not sure docs appreciate that fully.

So glad you are able to know what new reality you'll be facing. Know you'll take good care of yourself. Not liking the implications, but it is what it is.

Trish Hughes Kreis said...

Pegi, Robert has such a great attitude and seems to be enjoying his time at the SNF. He's making great progress in PT (I linked a couple of videos in the latest update - you might love to see those). Robert will keep plugging along like always. I'm fortunate that new diagnoses don't really faze him. Love to you and Jim!

Trish Hughes Kreis said...

Thank you, Kaye, Things are better and we are just taking each day as it comes. Robert has thwarted death so many times, every day is a gift! <3

Trish Hughes Kreis said...

I appreciate your support and knowledge, A. Obviously, you know what you're talking about. I never thought I'd spend so much time in the ER when caring for Robert but I understand your comment about only going when it gets really bad. Holy cow, isn't that the truth! I'll keep you posted on what's going on. Your support means a lot. Thank you! <3