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ksmom0611
12-20-2014, 11:05 AM
My surgery date is approaching quickly (Jan 21) and I am trying to gather as many things to help me out afterwards. (I'm being fused T4 to sacrum.) So far, I know I need a walker, bottom buddy, sock helper, adjustable/hospital bed, possible a toilet seat riser, shower stool. I've also thought od getting an extended rearview mirror and special side view mirrors for my car for when I return to driving. If you don't have a back up camera on your car, did you have one added or feel you needed it? Have I missed anything?

Was there anything you found very helpful that you hadn't thought of ahead of time? Both in terms of practicality and just comfort.

How long did you need to use these kinds of "assistive devices"?

Thanks.

The anxiety is really starting to kick in...

leahdragonfly
12-20-2014, 11:47 AM
Hi,

This question is frequently asked and everyone is different in what they need. The usual advice from Linda is to wait until after surgery and see what you need. I wouldn't worry one little bit about the car at this point, as you will not drive for probably at least 6-8 weeks.

My biggest advice to you is to stock up on laxatives at home…Miralax and Senokot-S are what I took every day for quite awhile. You also want to have a bottle of Magnesium Citrate around, just in case of severe constipation (which virtually all of us end up with and it is very unpleasant). All of these items are readily available at the drugstore.

You will not be able to pick stuff up off the floor, so several long-handled grabbers may come in handy (place them around the house). Amazing how frustrating it can be to drop stuff and know you can't pick it up.

Plan for a notebook to keep next to your bed where you write down the times you took all your meds. Believe me, at first there will be a lot of pills and you will not remember when you took them. You definitely want to stay on a schedule with the meds.

I never used the shower chair, and it is now cluttering up my attic. I used the walker the first day then never again, so it was not needed. Some docs don't want you to use a walker because they don't want you to lean. I never used a bottom buddy, some people do and some don't. Baby wipes are helpful though. I also figured out an easy way to put on socks without a sock aid.

I used the raised toilet seat for a few weeks and it was useful. I had the kind which is freestanding and stands over the toilet, so there is no chance of it coming loose. You want to avoid falls at all cost!

You don't need an adjustable hospital bed…I did use a hospital bed (flat, not raised) to lay in downstairs and watch TV, etc, but you might want to wait and see how you feel after surgery. They are quite firm and narrow so not always great for everyone.

Your local medical supply office can deliver anything you need on a day's notice usually, so you might want to wait until you are being discharged or home to see what you actually need.

You will appreciate comfortable lounging clothes…things that are soft and loose. Many of us had a hard time keeping warm after surgery so something snuggly is nice.

You might want to think about how you will pass the time in the first month or two…you will be exhausted and not have much energy, but will probably not be up to reading, and sitting will not be comfortable at first. I am not a big TV watcher but was I terribly bored, so I found some Netflix or TV series I enjoyed to pass the time.

Between then and now concentrate on eating very nutritiously, avoid getting sick, and exercise as much as you can. That was the only thing that helped me decrease my anxiety. And know we are all here on the other side ready to support you through your recovery.

ksmom0611
12-20-2014, 12:01 PM
Thank you for all that you wrote. I will definitely follow your suggestions!

LindaRacine
12-20-2014, 03:06 PM
Here's a list of helpful hints that I developed over many years.

1733

jackieg412
12-20-2014, 05:04 PM
A lumbar pillow for the car. Bumps hurt! I did get back up camera and larger rearview mirror. It helps. A cup with a straw. Stock up on small amounts of homemade soup and such. Mostly you won't eat much at a time. I did not need the toilet raiser but I am short. Depending on your winter location, you may need warm clothes as you will feel cold .and very strong legs. You will need them a lot just to move.

Irina
12-20-2014, 07:53 PM
Move all your clothes in top drawers, so that you don't have to bend to get them. Put pots and pans on a countertop so that they are within easy reach. I was also concerned about driving as my car does not have a back up camera. I didn't install any special mirrors or cameras and doing fine. I am fused T6 to sacrum, not sure if there is a big difference in mobility if you are fused from T4 down. I can back out, but very slowly. Whenever possible, I just park so that I don't have to back out, but go forward. Do not hurry with a camera or mirrors yet.

PeggyS
12-20-2014, 09:29 PM
I had a playlist of Contempory Christian songs on my phone. I played it continuously and it was the BEST thing to relieve my anxiety from the first morning on. I also purchased a 10' charging cord, so I was sure it would reach my bed. I took headphones, but didn't use them. I kept the music really low.

I didn't use my ipad til I went to rehab & I had a 10' cord for it, too.

I used ALL of the gadgets/tools!

golfnut
12-21-2014, 08:59 PM
Everyone is different, but I know I wanted to feel organized and prepared so I did as much as possible before my surgery. I didn't use a hospital bed or a shower seat so I'm glad I didn't invest in either. I had purchased 4 or 5 grabbers and left them in several rooms so I didn't get frustrated when I needed one and didn't know where I'd left it. I had extra pillows for the kitchen chair to sit on and also to place behind my back. I took a firm family room chair cushion and used it with another chair so that the height was about 5 inches higher. It was easier for me to get up and down from a higher than average chair. I had friends who loaned me lots of books. I also signed up for Netflix for several months. Having the time to read more than normal and enjoy movies is something that I enjoyed during my recovery. Best of luck. The time I spent worrying before my surgery was worse than my recovery!

fifa
01-04-2015, 10:41 AM
My surgery date is approaching quickly (Jan 21) and I am trying to gather as many things to help me out afterwards. (I'm being fused T4 to sacrum.) So far, I know I need a walker, bottom buddy, sock helper, adjustable/hospital bed, possible a toilet seat riser, shower stool. I've also thought od getting an extended rearview mirror and special side view mirrors for my car for when I return to driving. If you don't have a back up camera on your car, did you have one added or feel you needed it? Have I missed anything?

Was there anything you found very helpful that you hadn't thought of ahead of time? Both in terms of practicality and just comfort.

How long did you need to use these kinds of "assistive devices"?

Thanks.

The anxiety is really starting to kick in...

Hi,

I'm eight weeks out and can tell you that all the advice below is great advice. We bought a bidet toilet seat that just adds on to our regular toilet and that has been INVALUABLE to me as I have found the bathroom buddy not easy to use and not effective. I've also had one ileus two days after I was discharged from the hospital, and just cleared my fourth fecal impaction/bowel obstruction last night. I thought I had plenty of laxatives on hand, but what I was prescribed was a "stool softener" and not a laxative at all. Do some research and if it were me, having been through now four impactions, I would load up on several different things. As of last night, we have finally figured some things out and today things seem to be getting better. You'll read a lot of posts on here talking about you certainly don't want an ileus. You certainly don't want an impaction, either.

The warm water from the bidet helped so much. Please do yourself a favor and invest in a bottle of milk of magnesia, Peri-Colace tablets (which are both a stool softener plus a stimulant laxative). Get a box of glycerine suppositories just in case, and also, get a box of Fleet enemas. Trust me, if you need any of these things, you will need them at the worst possible time (middle of the night - home alone - you name it). That's been my biggest problem since I came home. Invest in a box of bendy straws. Keep a log of your meds and when you take them (and when you are supposed to take them). I also started doing much better once I started tracking my food and liquid intake. Oh, you'll think you're drinking and eating plenty, but at least keep track of your water to make sure. Things get pretty fuzzy on drugs. Just rest.

So far, my recovery has been pretty typical of all the others detailed in this forum except for the recurrent fecal impactions/bowel obstructions that I haven't much seen addressed here. I will be posting my own "poop thread" under my "Fifa's Surgery" header.

Oh, shoot, before I forget (I'll be posting this on my own thread, too) - Toyota tells me they can't add a back up camera to my RAV-4, so I'm going to be looking to trade soon. I can't twist to look behind me and the mirrors don't help because you can't see past the spare tire on the back. Meaning, if there was a kid on a trike behind you, you can't see that in any of the mirrors.

My dad had surgery shortly after I arrived home from my admission for the ileus after my surgery. Anyway, the hospital he was at is literally a mile from my house. I thought I would be smart and run up there to be with my mom while he was in surgery for three hours - I hadn't seen them for a month. Long story short, backing out, I tagged the bumper on my old car at the bottom of the driveway, and I also ran over a 30-year-old crepe myrtle at the top of the driveway. Yes, I hit two separate things before I got out of the driveway. Yet, like an IDIOT, I continued on to the hospital. I felt fine and completely unimpaired and able to drive. In fact, I was so impaired that the fact that I'd just hit two separate things didn't really phase me. My keys have been hidden from me now until I'm off the oxycontin and whatever else I'm taking. Do yourself a favor - even if you feel like you're fine to drive, just don't do it.

Good luck to you. Again, all of the above/below advice is terrific. Feel free to ask anything you want to ask - I think folks here have covered nearly everything.

Gentle hugs,
Fifa

Lizardacres
01-04-2015, 04:24 PM
Your oxycontin story reminded me of a similar episode I had when I had my wisdom teeth removed, only it was Percocet that I had on board. I was in college and home for spring break when I had this done. A few days after the surgery I was feeling GREAT (this is the meds speaking) and I decided to take my mom's Ford Pinto for a spin. I drove to a place where piles of dirt had been dumped and all the kids would go there and ride their bikes up and down the packed down hills of dirt. Well, I think I was the only person ever to do this in a Pinto. Up and down, around and around I went. All this with a stick shift and I didn't stall once. It seemed like a perfectly reasonable idea to me at the time. Went home, no problems but that night when I realized what I had done i quit the Percocet and never took another. I still can't believe I did that.

Especially since you have kids, have your husband take your keys away. These meds really impair your judgement.

lapieper
01-05-2015, 05:14 PM
I was discharged with a walker and a pair of 18" tongs (for the bathroom) -- that's it. And I ditched the walker the first day home. The one thing not mentioned was a gait keeper. We used my husband's belt around me when we walked. We got many a laugh over "being walked" by my husband. But it was invaluable. I felt I looked like a dog on a leash. I would have liked something to help me with personal hygiene and the toilet paper fiasco, the tongs just didn't cut it! Rather than take a bunch of over-the-counter or prescription meds for constipation, I stuck with prunes and prune juice, which worked well for me. Drink LOTS of water. I also craved fresh fruit. I slept 12-14 hours a day. Would be up for one to one and a half hours, then nap for the same amount, throughout the daylight hours. At night, I usually slept 3 hours straight, then had to sit up for about 20-30 minutes. I was just so uncomfortable laying in bed longer than that. I slept in a separate bedroom and hubby would check on me periodically throughout the night. He wrote down the meds for me for about the first month or so. I didn't drive for at least 8 weeks, and I was content to be at home. I was so groggy from the meds. My husband came home from work every day and made me lunch as I couldn't pick up the pan to pour the soup from pan to bowl. He also had to pour my milk for cereal in the mornings. The things we never think about. When they say do NOT pick up more than 2 pounds, they mean it. You will know very quickly what you can and cannot do, but the meds sure cloud judgment. My husband went back to work about 2 weeks after my surgery and I was on my own.

Would I do it again? Yes! Just don't put too many expectations on yourself. I had my first surgery in 2008, with five different surgeries following. I can now do pretty much everything. Some things I still feel I look awkward, but I don't worry about that.

ksmom0611
01-06-2015, 12:08 PM
Thank you for the specific advice! I'm going to stock up on all the laxative meds I can find! Lol. Funny how that seems to be the toughest thing people deal with. I'm used to taking Percocet though not as much as I will be taking, so I have some familiarity with the meds. I'm pretty sure I won't want to drive if I have them in me. I'm not looking forward to the lost independence of this whole process. I know it's short-lived though, but needing to ask for everything is going to get old really quickly!

I am stupidly worried about the Bottom buddy issue. :) I guess I will figure it out. Thanks for the suggestion about the bidet. I wouldn't have thought of that.

This is my list so far of things to have on hand:
1) Laxatives, laxatives, laxatives
2) straws
3)all clothes/things I will need on shelves or high places so I don't have to bend over
4)grabbers
5)bottom buddy
6) shower seat
7) maybe higher toilet
8)lumbar pillow
9) pillows to put on chair seats to make them higher
10) body pillow for bed
11) entertainment things
12) wipes
13)loose clothes and button up clothes
14) good slippers

I have the list from Linda as well.

Anything else? Thanks!

lapieper
01-06-2015, 06:09 PM
I forgot. I didn't wear a bra for several months. Did wear a brace, so had those cute little sleeveless seamless shirts provided with the brace. Also wore camisoles a lot with a sweatshirt over. Easy to get off and on (even without help)!

Rise
01-06-2015, 06:48 PM
Front closing bras were a big help too. Much easier to put on and less irritating.

Risë

susancook
01-06-2015, 07:51 PM
Pillow for your back when you are in your car. I felt like the "Pea and the Princess", that I could feel every stitch in the upholstery in the back of the seat.

Remember, all that you need the day of surgery is to show up buck naked with your insurance card. Your surgeon and the hospital do all of the work!

I gave my husband and daughter a journal to write down everything that happens to me postop: meds, poo, comments that the doctor makes, etc.

S.

Irina
01-07-2015, 12:10 AM
The last item on your list - slipers... I was told by UCSF do not wear slipers because it's easy to trip and fall in them. Get some loafers or slip on shoes that sit securely on your feet.

In the hospital, you will have a button on cord that you will press to release painkillers. It is easy to lose this button in the bed. I used Velcro strips to tie this button to the bed rail so that I always knew where it was. You can get Velcro strips on Amazon.

ksmom0611
01-07-2015, 01:20 PM
Great ideas Irina. THanks.

jackieg412
01-07-2015, 03:14 PM
I had a back up camera put in the car. It is from best buy and was installed there. It suction cups on the window. Wasn't too expensive and is cheaper then having a problem. So if your car doesn't have one or can't be factory equipped there is this option. I also have an additional side mirror and larger rearview mirror. I need them but everyone doesn't.

Irina
01-07-2015, 11:40 PM
I had a back up camera put in the car. It is from best buy and was installed there. It suction cups on the window. Wasn't too expensive and is cheaper then having a problem. So if your car doesn't have one or can't be factory equipped there is this option. I also have an additional side mirror and larger rearview mirror. I need them but everyone doesn't.

Hi Jackie,

I was worried about backing out too as I don't have a backup camera. May be this has to do with the fusion length, I am T6 to sacrum, but I just turn my whole upper body, including butt, to back out. Knock on the wood, it's been almost two years and no problems. But I avoid backing out whenever possible and park so that I only have to go forward.

I also think that we all have different mindsets... The thought of adding special mirrors to my car freaked me out... That would make me feel that I am not like all the other people around... that would make me feel old... Although I am 47 and getting there, but fighting it haha. So, I decided to wait and see if I can do without any special car equipment and I can!

That's just me...

fifa
01-07-2015, 11:46 PM
The last item on your list - slipers... I was told by UCSF do not wear slipers because it's easy to trip and fall in them. Get some loafers or slip on shoes that sit securely on your feet.

In the hospital, you will have a button on cord that you will press to release painkillers. It is easy to lose this button in the bed. I used Velcro strips to tie this button to the bed rail so that I always knew where it was. You can get Velcro strips on Amazon.

Hi,

Yes, this is great advice, Irina - I had already forgotten about this. Someone else in another thread had suggested a hair tie for this purpose, so I took two of those with me and they really came in handy to attach the PCA pump button to my hand. Everything gets lost in the bed. I'm at home now, and even though I have a bedside table, I'm constantly looking for two or three different remotes, the computer mouse, my tablet....you name it. Yes, some velcro or a hair tie (I used the kind that looks like a fabric rubber band) will come in very handy. I know Peggy had her cell phone affixed to a lanyard, and I did that, too, which was very helpful, plus velcroed the cord to the bedrail. I also took my own 12-foot extension cord to the hospital so I could charge up my phone and my tablet. I never once used the tablet - I was too out of it. Also, the texts I ended up sending to people were practically illegible, made no sense whatsoever, and were sent at all hours of the day and night because (a) I was so out of it I never knew if it was day or night, and (b) Barnes wireless system sends stuff when it feels like it - NOT when you've hit "send." I know this for a fact because I was down in xray when my cousin received a text from me, and I had sent it the day before.

Anyway, velcro for PCA pump is a must!

Fifa

Irina
01-07-2015, 11:53 PM
Forgot... when I started driving, I kept a dressing stick with the hook in my car, tacked in between a passenger seat and a divider so that nobody could see it, hehe. Sometimes, when driving, my purse or jacket would fall on the floor and I used that dressing stick to get it off the floor. I also kept a pair of grabbers in the trunk, just in case.

ksmom0611
01-08-2015, 01:44 PM
So much great advice!

How do you close the car door when sitting in the car?

Did anyone have balance issues after surgery? For how long?

How long did people use a walker?

How much weight did you lose? That could be a good side effect!

jackieg412
01-08-2015, 02:54 PM
Here is how to get in the car. Sit first while feet are still out of the care. Back in. Then grab seat belt and door handle as you swing your legs into the car. Pull door closed and buckle seat belt. You do have to have the door all the way open as you get in. No tight parking places as you won't be able to open the door all the way. This works either as a passenger or driver. I used a walker briefly but keep a grabber in the car in case you drop the keys. I also brought 2 of everything in the shower as dropping does happen. I lost 32 pounds.

PeggyS
01-08-2015, 05:33 PM
As I back up to the seat in the car, I pull the door as close as I can & still allow enough room to finish getting in. That way the handle is close enough to reach. I read about tying a scarf on the interior door handle for something to grab to pull the door shut.

My husband has been taking me to stores, so I can push a cart & walk for 40 minutes. Of course, I shop, too. Anyhow, I usually put a smaller grabber in my cart to reach items on the bottom shelf. I didn't have my grabber with me in Target today & I dropped a coupon I really wanted to use. I hung around in the aisle, hoping someone would come by . . . that didn't work, so I slid it with my foot over to the next aisle and asked a child to pick it up! In the grocery, my grabber wasn't strong enough to lift a container of salt. It was rolling around on the floor while I waited for someone to come by! At least it didn't break open.

I gained 10 pounds in the hospital from the IVs! I barely ate anything! It was gone in 2 weeks & I'm the weight I was before surgery. I was hoping for 10 pounds in the other direction!

rmt
01-08-2015, 06:12 PM
Hi,
I am 6mo post surgery t4-s. I will say that the most important item that helped me was my goal/plan to get off all narcotics by 6 weeks. I had met (in Dr Lenke's waiting room) and kept in contact with a 65 year old man who experienced a wonderful recovery...I asked him a few weeks before my surgery how long it took him to get off all pain meds and he said 5 weeks so I knew I could do it as well! They will send you home with sooooo much medication that you really do not need....The sooner you start weaning the sooner you will be off and the sooner you will feel better...I felt like I would rather be in a little pain but driving vs all loopy and not driving......The pain I experienced was not as bad as the awkward uncomfortableness I felt that the pain medicine could not address anyways. I was not in so much pain but felt a prisoner trapped inside my new weird body (takes about 4 weeks for that to go away and then you feel fine) I started weaning myself the day I got home (it takes a long time and you must go slow or you end up with fluish feeling symptons whick are worse than your back pain) and was finished with all narcotics by 6 weeks and started driving at 6 weeks....My new car had a back up cam and was a godsend...It felt so good to have my life back...Although I was still in some pain and needed lots of breaks in the day to lay it was not that bad....I even ended up with a frozen shoulder and still have a compressed geneto femoral nerve (both more painful than my back) but really not a big deal in the scheme of things! I love my new back and super long torso and am soooooo happy to be on this side of the past 6 mo!

Here are the other items I found helpful


a comfy recliner with an electric recline button
Netflix so you can watch Breaking Bad, Mad Men, Fargo, etc. also HBO, Showtime
front close bra/light weight stretchy bras
baggy sweatshirts/loose pull on pants
about 5 reachers for all over house
raised toilet seat (I'm 6 feet tall so I really needed it and still love it!)
miralax, suppository dulcolax, citrate, prune juice, fiber one
pen paper to write down meds
extra cushions to make yourself comfortable while sitting in chairs
lots of pillows
long handle I purchased on Amazon to attach to my razor for legs
lumbar pillow for car when you do start driving...you will probably use it higher though like around your mid back to get your neck off of neck cushion

You will not want to sit in shower...very awkward...standing will be your most comfortable position for about 2 mo
I never had any trouble wiping myself
did not wear socks for about 5 mo...just slipped in my tennis shoes that were tied very loosely
walking will make you feel so good so try to do it as much as you can to get those natural endorphins flowing!!!!

Although I did have a many a pity party for myself in the first 6 weeks I survived!!! Good luck to you!!! You can do this!!!!

Irina
01-08-2015, 11:24 PM
So much great advice!

How do you close the car door when sitting in the car?

Did anyone have balance issues after surgery? For how long?

How long did people use a walker?

How much weight did you lose? That could be a good side effect!

In the beginning, I was getting in the car this way: open the the door wide, stand with your back to the car. Stick your butt out and get in the car butt first trying not to hit your head. I am tall, so that was important. When you are seated, grab the handle on the top of the doorway, right above your head. Rotate your whole body while holding on the handle. To close the door, I used the dressing stick with the hook that was always within an easy reach in my car. Now I get in the car almost like I did before the surgery, but slower.

Didn't have any balance issues. Used a walker for several weeks because I had a complication that brought me back to the hospital for another week, so I was very weak and needed that walker. Lost a lot of weight, don't know how much, but looked scary. Then I gained all (and even more) gain back.

green m&m
01-09-2015, 10:14 AM
If you choose to try sitting on a stool in the shower you'll definitely want to get a hand held attachment and a rubber suction shower head older.

That's the set up I had so I could direct water closer to my body instead of being pelted in my face while I was sitting. Also worked well while I needed help showering. (Had pain when raising arms for first two weeks)


Link for the shower mount

http://amzn.com/B001CFACMI

The hand held shower head brand I got was Moim or M something. Found at home depot.

ksmom0611
01-09-2015, 03:54 PM
Will definitely look into the shower suction cup thing. I already have a hand held shower head, so I'm all set there!

lduran
03-17-2015, 10:08 AM
Here are the other items I found helpful


a comfy recliner with an electric recline button
Netflix so you can watch Breaking Bad, Mad Men, Fargo, etc. also HBO, Showtime
front close bra/light weight stretchy bras
baggy sweatshirts/loose pull on pants
about 5 reachers for all over house
raised toilet seat (I'm 6 feet tall so I really needed it and still love it!)
miralax, suppository dulcolax, citrate, prune juice, fiber one
pen paper to write down meds
extra cushions to make yourself comfortable while sitting in chairs
lots of pillows
long handle I purchased on Amazon to attach to my razor for legs
lumbar pillow for car when you do start driving...you will probably use it higher though like around your mid back to get your neck off of neck cushion

You can do this!!!!

This is a very helpful list. Things to keep in mind and very good advice on how to get off pain meds. My surgery is 4/21 so all these posts come really handy. Thank you all for your inputs. Loretta

golfnut
03-17-2015, 04:04 PM
Good luck with your surgery. The list is one of the best I've seen!

ksmom0611
03-18-2015, 03:12 PM
I'm 7 weeks post op and this is what I have found to be the most helpful so far:

Raised toilet seat
grabbers
haven't used the dressing stick yet , but I know I will
sock aide
I started using slippers about 3 weeks post op
button down pajama tops
no bra yet (tried once and started yelling "get it off!" lol)
pillows
adjustable bed has been me savior. I can't imagine doing this without it. I'm still constantly trying to get comfortable and it changes frequently
Netflix
bed tray so you can eat in bed
STRAWS - it's hard to lift a cup to your lips, so straws are a necessity
pillow for the car
spoon to eat rice, etc


Hope this helps!