Realistic expectations

[Kayde]

Thank you Doreen

I always need the prayers. Thanks so much! It means a lot.

[djkinkead]

Yeah, I had thought I would be doing a lot of reading during my first month of recoup, but brain cells just weren't with it--concentration problems. Netflix became my best entertainment--I am still going through Lost 2004--tv series on it.

What surgeon are you going to?

I like someone's idea of alarm clock to wake you for your meds--I didn't do that and found I woke myself up within an hour (I was and still doing meds every four hours) of when they were due. Try to find a good four hour rotation...right now what isn't too bad is every four hours doing 6 a.m., 10 a.m. 2 pm, 6 pm, 10 pm 2 a.m the start again--it means you only really get up once in the middle of the night...might be easier on you.

Will also be saying prayers for you. God is in control!!!!

The raised toilet seat is nice, not so rude when you are half sleep/drugged and need to go in the middle of the night and you don't have to go so far down to "land".... I know that sounds funny, but its true.

The one thing I am still marveling at is where did the first month after the surgery go? You really lose track of days....it's bizzare...your world revolves around your four hour pain meds.

Learning to move around in bed is a challenge. Log rolls. Getting out of bed properly....I practice before the surgery.

Lastly, memory foam is a wonderful thing....it does reflect heat back, so you may not need heated blankets....everyone is different.

Okay, that's my latest brain drain on what I have gone through for the last few months...

Dollie

[Kayde]

Hi Dollie

I am going to Anthony Moreno. I did some surgery last year and the rotation was terrible. I had forgotten about that. Timing is everything. I hate getting up in the middle of the night. I think I will put those times in my alarms now so I dont forget When I first had the high toilets installed I landed way too close so it was always like a crash landing. Lol. Now when I use regular restrooms I feel like I am sitting on the floor. And it does change the way you do business so to speak. Trying to keep my sense of humor. My friend has a degenerative spine disease and he has lost almost all mobility and can't even hold his baby now and no surgery will ever make it right. He has had both hips replaced a shoulder that is now frozen in place and the other is on it's way to being the same. He and I are both in our mid forty's. I know no matter what someone is always worse. Not a competition I ever want to win but makes me grateful each day. He s one if the happiest most positive person most all the time I tell myself if hrpe can face that I can do this. And I figure anything I read I won't remember anyway. Hahaha
But I do have to get back to work in 5 weeks so that is a real challenge in my head.

[titaniumed]

Hi Kayde, Judy, and others going in.

I would suggest the foam topper for the bed. I have a medium tempurpedic, and it wasn’t soft enough. I struggled with sleeping in my recovery till I bought the foam and soft down pillows are a must, many of them.

Also, 1-2 bottles of Magnesium Citrate just in case you need to blow up a dam. It will save a trip back to the hospital....Its sold over the counter and runs about $1.25 per bottle. Constipation is something you want to avoid at all cost, some Doctors recommend going nuclear. We all get constipated to some degree or another. Consider it your fire extinguisher. I was told NEVER to take x-lax.

Having your support system in place, (trained, of course) is important. Practice your moans, if they run, you have it perfected!

I still try once in a while, but nobody comes anymore.....lol
Ed

[backissues]

I am 10 months post-op and am trying to think of helpful hints.

Someone on the Forum suggested I buy silk pajamas so I could slide in bed to move around. (They can be silky polyester. I found them at Kohl's.) I found this very helpful. I bought 2 pairs so I could wash one and wear one.

Because I couldn't tie my shoes (and still can't), I bought elastic laces to use in my existing walking shoes or whatever "sneakers" you use. You will need to get up and walk when you are home. I chose to get the elastic laces instead of new shoes because I knew the existing ones were comfortable.

In the hospital, they had a set of aides that I bought. One was a "dressing stick." I found that useful for several months to help put on pants. There is also a tool to help with putting socks on.

In addition to a long-handled tool for the shower, I bought a sponge like long-handled tool to spread lotion on legs and anywhere you can't reach. I also bought a shower head that can be used hand held. I wasn't allowed to get water on my back until the last of the scabs had come off from my incision. That took a while. I learned to take showers facing the water and be careful.

Buy some Gatorade or other real juice drinks to keep you hydrated. Water isn't enough by itself when you are on narcotics, though I mixed it half and half. You have to keep your sodium and potassium levels up.

Ed has lots of advice about constipation associated with the drugs.

I followed his advice about the foam topper and am glad I did.

I never had a hospital bed and was able to get upstairs in my house from the first day I was home. They taught me to climb stairs using a cane. I did have a single day bed in my familyroom so I could rest and sleep downstairs. Dr. Rand doesn't want patients propped up on pillows, so my husband used blocks under the head end of the bed to raise it up so I could watch TV. Then, I could use one pillow.

With the brace, you will need crew neck t-shirts, or higher neck, to go under it. Then, you can put on whatever over the brace. I had it disguised so no one really noticed. I wore elastic-waist pants, or pants with ties at the waist, until I stopped wearing the brace and that was helpful.

I did use a raised toilet seat for the reasons mentioned about nighttime and not having to sit DOWN so low. I brought the cane into the bathroom to help me get up from the toilet for a while after surgery.

That's all I can think of right now.

It is amazing how much you forget. It is kind of like child birth where it isn't easy when you are going through it but the result is worth any discomfort.

Good luck,
Irene

[Elisa]

It's a little different when your kid is the one recovering and of course as a mom I was willing to do it all. Thing is, once Elias was home, out of the hospital and out of halo traction, he was everywhere! Seriously, the first night we were home I went downstairs to the family room and he was there, sitting on a chair watching TV. I had no idea he'd be walking down the steep stairs and wandering all over the house. I spent most of my time telling him everything he shouldn't be doing.

As an adult, I recall 'lilysaidwhat' suggesting mouth wipes to clean your teeth and freshen your mouth while in the hospital. Great idea.

[golfnut]

Kayde and Judy,
People have already given good suggestions. These are the items that I found necessary: throw away razor taped to long handled back scratcher. I probably used this for 6 months replacing the razor as needed, Skeetcher Tennis shoes with no shoe strings, jogging suits, 5 grabbers, tongs as a bathroom aide (no way did I think I would need this, but certainly did need it for several months), sock aide-super easy to use, body pillows that I found at Wal-mart-log rolled onto two of them side by side nightly, long handled shoe horns, Net-flix subscription, lots of books. I thought I was pretty independent, but got dizzy and blacked out at about 3 weeks post-op and was certainly glad my husband was home. Naturally, he went crazy, but it was still good that I wasn't alone. After my experiecne, I think you should use a walker until you are off of the heavy pain medication. Best of luck to both of your for successful surgeries and smooth recoveries. Just think . . . next year at this time, you'll be giving suggestions to those waiting for surgery!

[titaniumed]

Ed has lots of advice about constipation associated with the drugs.

Irene

I think I do this since being constipated on 100mg of Percoset + was one of the most painful things I have ever experianced, and I have passed kidney stones.

A/P scoli surgery I rate a 10 on a pain level
8mm kidney stone that jams in the ureter, 15
My constipation at 6 weeks, 10

Irene, you HAVE done well. Congratulations!!!
Ed

[titaniumed]

My surgeon wanted me to go to the Dentist and make sure everything in my mouth was fine and dandy......

Ed

[Elisa]

You're not alone Ed b/c Elias was absolutely miserable about not being able to go pee after his first surgery and he had to be catheterized three times and then after his second surgery he couldn't go poo for a while. He didn't complain much about having his back ripped open twice and bolts in his head though.

[Kayde]

Passing rocks and tar

Constipation is what I dread the most. I am on highnamounts of magnesium due to foot and legs cramps and ibs years ago that the magnesium cured. I am hoping if I clear out the road completely before surgery and can take thenmagnesium then I an hopeful I can avoid that the best can. it's just miserable. After my first child I had it so bad t
I thought I would have surgery it was so bad

[djkinkead]

Memory Foam Density

While we are talking about best practices and memory foam is mentioned, you need to realize memory foam comes in different densities.

I weigh a whopping 120 lbs, so I need the least dense foam available which is a 3 lb density. Go to Ebay and search memory foam--you learn alot about it from the ads.

People weighing more need higher a higher density. I also saw the way you sleep may affect how thick a topper you need.

Our bed already had 1.5 inches of memory foam on it, so I just purchased 2 inch 3.3 lb density memory foam topper.

I haven't been impressed with the memory foam I see sold is some stores--I did buy one that said it would be "cooler"....it had little squares taken out of it. I put it down on the bed, laid down and realized those missing squares pretty much made the foam useless. Back to the store it went.

It's fun to see others had the same higher toilet experience.....when you aren't with it, not having to get down to a normal level toilet is a good thing....

[Lorz]

I just thought of another really helpful item, which I am still using now- a bed rail that slides between your mattress and boxspring. It is really helpful for log rolling, and getting leverage to sit up. Again, I bought mine on Amazon, and am so glad I did. I also bought a bath step from there to put next to my bed, since it is really high, and I am still using that also. Once you are able to take a bath, it is useful to get in and out of the tub too.

[boomergal]

For my first surgery I had satin PJ's, which made it easier to turn over in bed. For my second surgery I
added satin sheets (available from JCP.com) They make changing position a breeze. I highly recommend
them. I also recommend having Gas-X on hand. (sarahcant, your post "sushi = gas" still makes me laugh.)

Mary
Fused T2-T12 on 7/5/11 with Dr. Boachie
Fusion extended to L4 on 9/21/11

[scooter950]

This is great

just wanted to say .. this is great! I love reading everythign, never thought about the electric plugs at table top level! I will be buying many aides... but I really appreciate all the advice everyone is sharing- defeintly geting the badrail gizmo. :-)

I think I really am underestimating the pain ( or overestimating my own abilities?) - I look at my house, my bathroom and I think "I;ll be OK" but in reality- I need to prepare for the worst case scenario.

About shaving- can't you bend your leg across- at the knee? That's how I clip my nails now- I was thinking, they aren't operating on my hip joints so can't I still bend at the knee, and reach my legs & toes?

again, thank you to all for sharing your experience- this is great! Jamie