Post-discharge recovery: how should I prepare?

[Trent in WA]

Folks,

Hello! This is my first post to the forum. After experiencing some hearing loss and feelings of congestion in my left ear, I was diagnosed with a small (12x9x6 mm) AN at the end of June. My surgery is scheduled for mid-December. Barring any dramatic changes in the tumor size, the plan is to take a middle fossa approach. As nervous as I am about having a hole opened in my skull, I’m feeling confident and optimistic about the surgery, and I really like my surgical team (Drs. Delashaw and Hoistad at Swedish in Seattle).

I’m currently planning my post-discharge care. My fiancée, who is wonderful and supportive, has CFS/ME, has limited stamina, and can’t reliably drive, and while she’d really like to be my primary caregiver, I need to plan my post-discharge recovery as though I were going it solo. My insurance will cover daily visits by a home healthcare nurse, so that’s there if I need it.

With that background: What are the things I should be doing in the weeks leading up to my surgery to get ready for the weeks after I’m discharged but before I’m fully mended? How long will it likely be before I’m able to walk around my apartment, go to the convenience store downstairs, cook simple meals (say, a fish filet with rice and a salad), dress myself, etc.? Am I going to need to use a bedpan, or will I stay in the hospital until I can manage a trip to the bathroom? I have two dogs: is dog hair enough of an infectious agent that I’ll need to rehome them, or will they be OK to stay, assuming I can find dog walkers to take them out regularly until I’m capable of doing it on my own?

I’m sure there are many, many more things I need to keep in mind, so feel free to share them with me.

And thank all of you so much for your help and support. I’ve been lurking here since even before I was officially diagnosed, and the warmth and generosity here has been amazing.

Trent

[anothereveryman]

Folks,

Hello! This is my first post to the forum. After experiencing some hearing loss and feelings of congestion in my left ear, I was diagnosed with a small (12x9x6 mm) AN at the end of June. My surgery is scheduled for mid-December. Barring any dramatic changes in the tumor size, the plan is to take a middle fossa approach. As nervous as I am about having a hole opened in my skull, I’m feeling confident and optimistic about the surgery, and I really like my surgical team (Drs. Delashaw and Hoistad at Swedish in Seattle).

I’m currently planning my post-discharge care. My fiancée, who is wonderful and supportive, has CFS/ME, has limited stamina, and can’t reliably drive, and while she’d really like to be my primary caregiver, I need to plan my post-discharge recovery as though I were going it solo. My insurance will cover daily visits by a home healthcare nurse, so that’s there if I need it.

With that background: What are the things I should be doing in the weeks leading up to my surgery to get ready for the weeks after I’m discharged but before I’m fully mended? How long will it likely be before I’m able to walk around my apartment, go to the convenience store downstairs, cook simple meals (say, a fish filet with rice and a salad), dress myself, etc.? Am I going to need to use a bedpan, or will I stay in the hospital until I can manage a trip to the bathroom? I have two dogs: is dog hair enough of an infectious agent that I’ll need to rehome them, or will they be OK to stay, assuming I can find dog walkers to take them out regularly until I’m capable of doing it on my own?

I’m sure there are many, many more things I need to keep in mind, so feel free to share them with me.

And thank all of you so much for your help and support. I’ve been lurking here since even before I was officially diagnosed, and the warmth and generosity here has been amazing.

Trent

You may want to check with your doctor/surgeon because every case is a little different, but in my case, I was told that leakage of cerebral spinal fluid was a possibility (even though it didnt happen during the surgery) and as a precaution to not yawn with arms above my head, to avoid blowing my nose and sneezing where possible, to sneeze with my mouth open when I had to, to not bend forward or downward and not to lift more than ten pounds for at least 6 weeks after surgery.

I hope that helps!

[comfortzone]

I had a hard time with dizziness so may have different suggestions. I was also very fortunate to stay with my parents for a few weeks after surgery before coming home to my apartment. I have a little dog and it was the best thing for my recovery to go for a few walks a day after a few weeks.

I spent four days in hospital, it was two days before I could get out of bed and was encouraged to walk around the ward as much as possible (which wasn't much). Difference makers can be stairs (tough at first) handrails (excellent) whether your neighborhood is flat or hilly. 

No worries about dog hair and infections, in my case anyway. I had a little CSF leak after one week for a few days at home but it was just a few drips when I tipped my head way forward.

I had a walker with a seat, brakes and a basket. Came in handy for walking the dog and also for carrying groceries/stuff around. I was able to tie the dog leash to the walker and take a seat if I needed a break. Excellent for attracting others with walkers who seemed to love company.

A cane, again I was really wobbly and had vision problems so the cane was helpful for getting around after graduating from the walker.

A backpack so I could carry stuff and hold on to the cane and the dog.

A bath seat or transfer bench. Made it much easier and safer to have a bath, also had a shower hose so that was easier.

A freezer full of individual meals. I pre-made a bunch of soup and froze it. I was okay to really cook after about 6 weeks. My problem wasn't so much the cooking as it was carrying things around without spilling them so I also loved my reusable drink cup with lid and straw.

Meal replacement shakes - I had a lot of nausea so not much of an appetite but could drink these.

A heating pad of some sort - the majority of my pain was from as pinched nerve in my neck from how they had positioned me - heating pad was nice.

Tylenol

Eye drops (artificial tears)

Comfy clothes

Set bills to auto pay

Stock up on household items, tissue, dish soap, toothpaste etc.

That's all I can think of for now!

One more - a night light so you can make it around in the dark

Corinne

[Big Steve]

Trent,
Do as your doc tells ya, of course.  Being in good physical shape going into surgery will help.  How you will fare after surgery is a crap shoot. 

I was pretty close to self-sufficient after leaving the hospital, able to walk around the house with a cane the next day, able to walk without a cane 3 days after surgery and walked 50 miles (avg. 7 miles/day) around town my second week.  YMMV, of course.  It took me a few weeks before I could safely drive.  I was skiing 7 weeks after surgery, but I'm pretty sure that makes me an outlier.

IME, the side effects of the post-surgery steroids were a big issue.  I bloated up like a whale, had trouble sleeping, became a temporary diabetic.  Again, YMMV.  It took me 18 months to shed the extra pounds.

Where in WA are you?

Steve in Seattle

[Trent in WA]

Steve,

That's pretty great news, at least on getting your mobility back so quickly. We should talk – I'm in Seattle too.

[CatzEyes]

Hi Trent --

I also had surgery with Dr Delashaw (and Dr Bachous) at Swedish Neuro; they'll give you a wonderfully thorough packet of information about what to do/not to do before they let you out the door. My surgery was also middle fossa, and I was back at work a month after surgery, so I felt very well blessed by their expertise. I contributed a couple of threads here on the forum, including a very detailed one about the experience, and you're welcome to visit my CaringBridge site if you'd like: http://www.caringbridge.org/visit/lauracameron2

I'm in the Puget Sound area, feel free to PM to set up a time to chat if you like. (And a shout-out to Steve in Seattle, too!)

Laura