Post surgery nightmare and rehab questions...

[casole]

First, so grateful I retired in May or I would have had to take a leave of absence...

Background : My 78 yo mom had acdf spinal surgery a month ago resulting in acute dysphagia. She was on TPN in the hospital for 3 weeks and then she and our family made the decision to put on a PEG tube. In the hospital a CNA laid hands on her (pushed hard on her chest told her her roommate was trying to sleep) and was menacing.


We complained and she was moved to a private room. This traumatized her to the point we had to be there 24/7. After 4 weeks in hospital she is now in rehab in SNF getting speech, PT, OT so she can get strong enough to come home, hopefully using bolus (she's on a continual feed now) and continue therapies until her swallow issues resolve. She is still traumatized by all that has happened (no food going on 5 weeks, the hospital incident). She is still terrified tho the folks at the rehab have been fine with her. I feel like some hospital delerium may be setting in.


It's been horrible, her mind is good but I feel like she's inching toward a breakdown.

We are trying to let the folks there do their jobs, but there is a lot of downtime. After the hospital experience we are very wary, and mom does have a tendency to sometimes refuse things when offered, only to change her mind. She's just so fearful and untrusting now bc of this botched result.


Has anyone else dealt with this "side effect" of acdf surgery. How long did it take (if ever) to resolve? Was the transition from hospital to rehab just a traumatic? Tips on what we can do to make it easier? We've tried to be there as much as possible without hovering, staying positive etc. I thought she would be happier but she seems more miserable and depressed. I understand, this all happened to her and she feels helpless.... We are all heartbroken for her. My dad is same age and healthy but having trouble coping too with this unintended consequence from a surgery that was supposed to help her..


Thanks for reading... .

 

[MichaelB]

Moved to the health forum

 

[Amethyst]

May I ask, what are acdf and TPN?

I'm so sorry your Mom and Dad are suffering through such a nightmare.

 

[casole]

Hi Amethyst,

ACDF is a surgery used to treat spinal stenosis. The stenosis was causing severe pain, who knew the cure would be worse. I'm actually not sure what the initials stand for. TPN is essentially nutrition via IV. Again not sure the initials..

So many people advised against the surgery. But she felt the pain she was in was unbearable and who could have foretold how much worse the situation could be. She'd give anything to be back in that situation now...

Thank you for your thoughts I really appreciate it.

 

[MissMolly]

Anterior Cervical Discectomy and Fusion - through the front of the neck

And I have 2 of those in the past and had Posterior Cervical Discectomy and Fusion (through the back of the neck) in January of this year, but did/do not suffer the swallowing problems your mom is dealing with. So sorry to hear that. Hope she recovers soon.

 

[Bamaman]

So sorry your grandmother's having such problems. Those upper neck surgeries can be really tough.

My wife had 4 discectomies and a fusion 7/12 and 7/14. It had gotten to the point where she couldn't even sleep for intense leg pain. She had a thrombosis (blood clot) and went to another hospital for a week--then 10 days in a rehab hospital. Got out, fell and broke her leg 5 hrs. later. Back to another hospital for plates & screws. Then to a nursing home/rehab.

Now it's 3 months later, and she's not strong enough to stand. Been out of the bed 2 hrs. total. We go to pain mgmt. clinic tomorrow, and we don't think they're willing to give her but half the pain meds it takes to make her comfortable. Politicians are telling anesthesiologists how much medicine they can prescribe without caring how bad off they are physically.

Life is tough for so many people in severe pain. And no one seems to understand what it's like to be completely bedridden.

 

[casole]

MissMolly, so glad you did not have the same complications.

Bamaman, I read your wife's story I think in another thread. You had your granddaughter with you I think? Its so hard when someone you love is hurting. For me this Healthcare maze is the most complicated thing I've ever dealt with. Trying to be an advocate, being viewed as "difficult" while doing so, trying to make the right decisions while respecting my mom's autonomy and agency over herself. I feel for you and your wife...

 

[pacergal]

I am so sorry your family is going through this, especially for your Mom.
I am sure she knows the the more OT/PT she receives and does, the faster she will recover. How is her pain level? Did that improve? If so, help her to focus on that positive aspect and continue to work on the dysphagia.
Perhaps seeing a therapist/psychologist also will help her move forward from fear so she can get strong enough to come home.
She will most likely continue to need therapy, including speech/language pathologist for her swallowing issues.
My thoughts and prayers are with your mom and family

 

[PatrickA5]

I had 3 level ACDF a couple of years ago. Swallowing was difficult at first, but has gotten progressively better over the last year or so. Hopefully you mom's condition will get better over time. I know there are some procedures that can be done to help, but I would imagine she's already had those done. Hope she gets better soon.