Comfort in a Diagnosis

Robert is getting his appetite back!

Robert is getting his appetite back!

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!

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.

Enter 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.”

NO HE DOESN’T!

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.

GET HIM IN THERE!

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.

Please!

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.

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’s 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.

Profile photo of Trish

About Trish

I am Robert’s older sister and a freelance writer and am also a full-time Legal Administrator for a wonderful law firm (no, that is not an oxymoron). I am the caregiver for my youngest brother, Robert, who has suffered from uncontrolled epilepsy his entire life. In his late-40s now, he lives with me and my husband. I have somehow managed to navigate the maze of social services and government programs available to help Robert and continue to be amazed at the amount of time and persistence that is needed to do so. Robert finds happiness in simple pleasures like doing word search puzzles and watching his favorite shows (Family Feud and Jeopardy, of course!)

5 thoughts on “Comfort in a Diagnosis

  1. Profile photo of DeniseDenise

    Hi Trish–I totally agree about the comfort of knowing. I start a book, get the gist of the plot line, read the end of the book, then go back to the beginning and finish it. I just don’t like to not know.

    So, thank goodness you know. It’s certainly not what you wanted to know, though, and the news means an adjustment for all of you.

    I wanted to recommend a resource for you–a podcast I recorded 4 1/2 years ago with a hospice director. His connection wasn’t the best but is message is really wonderful. He reminds us to plan and prepare to manage the declines because that’s the best way to manage them.

    Here’s the podcast and recap: http://www.m40.siteground.biz/~caregiv6/2010/01/making-the-most-of-end-of-life/

    I would also suggest that while Robert’s in rehab to make calls to your local hospice organizations. They can share more information about when hospice would be appropriate. They also can tell you about palliative care, whose purpose is comfort care. I know how important Robert’s comfort is to you and these organizations can share information so that his comfort (which comforts you) happens.

    So glad you keep us posted. Let us know, as you can, how everything goes.

    Reply
  2. Profile photo of MariaMaria

    Trish-
    HI! I just read your post and wanted to know I’m thinking of you & Robert right now! You must be very tired of waiting and then getting no where!
    Denise (as always)had some wonderful ideas!
    Sending you lots of hugs, prayers, and warm wishes from Kansas,
    Maria

    Reply
  3. Profile photo of PegiPegi

    Trish, yes, there is comfort in having a diagnosis, and I’m glad after all the insanity of the past couple weeks at least you now know what has caused the changes in Robert. I hope that the PT is able to get him some mobility back. Perhaps some “excellence”. He sure does look happy in the pic, can’t ever look away from my favorite smile! You and yours remain in my heart and prayers.

    Reply
  4. Profile photo of EllysGdaughterEllysGdaughter

    Hi Trish, oh my, thanks for sharing all the gory details, it makes more sense now. . . you can advocate for him better knowing there really is hardware still!!!???!!! Oh, my gravy… how confusing for everyone. I also like diagnosis,,, just don’t have enough on my Grandma to help me get through every day,,, but it sure does help knowing what is causing pain, paralysis, etc… I love the pictures of Robert smiling too! I’ll have a scoop of Rocky Road today to toast his transition to SNF :) ((HUGS))

    Reply

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