New here - 2 weeks post-op, fused T10-pelvis

[susancook]

I'm so happy to have finally made contact with you all! I'm exhausted and sore, and the daily walking has me tuckered out, but every time I walk past a shop window, and glance at my reflection and see the new arch in my spine, I think it's worth every minute of pain I've endured since my surgery. I used to have what I considered to be a terrible case of flatback (although my doctor said it wasn't the worst he'd seen). My spine sort of curled under, so I was not only c shaped side to side, I was a little bit c shaped front to back too. And I know cosmetic considerations should be secondary to medical necessity when deciding to have the surgery, and I decided to have the surgery because of debilitating pain and immobility, but getting a pleasant new shape is such a bonus! I feel like I've been given a reward for my pain and suffering. My new lordosis is a gift that I will treasure. I just want to heal now so I can go out on the town and show it off! Kidding. I'm fused to the pelvis.
Not sure if there's going to be much dancing in my future. But still. I am grateful. Thanks to you all for the warm welcome!

Baroness: Dance slowly and gently....but do dance! Forget kicking up your heels until further healing!
Susan

[susancook]

Yes, I'm in Brooklyn. Anyone else out there live in NYC? I could use a walking buddy. Two days ago I put my sneakers on for the first time. Laced them up with the elastic laces that came in the hip kit, then used my super-long shoe horn and my grabber to put them on. Took me about 45 minutes but I eventually got them on! I can do much longer walks now. Geez, everything takes so long, just to accomplish the simplest of tasks! I see now why they asked me to take 4 months off of work. I will need all that time just to get dressed every day.

I picked up laundry today with my grabber sock by sock....talk about slow.
Susan

PS: I grew up in Massapequa Park, and colleged [I just made up that word and spell check doesn't like it!] in NYC the left to see the world!

[the_baroness]

Remember that with the walking, do multiple short walks each day. One long walk will not make you heal faster, it will only set you back in pain.

Question, how long is a short walk? How far should I try to walk each day? Pretty much everyday I find that I over-do it, one way or another. I need to figure out how to get myself to chill out!

I also have a lot of questions about painkillers. My doctors office seems to want me to taper off as soon as possible. So whenever I am feeling ok, I try to substitute Tylenol instead of the oxycodone, or take a nap rather than take a pill. I have also just started to take Gabapentin, to deal with what I like to refer to as "that feeling where fire ants are attacking my back." I also have a lot of pain in my right heel at night when I sleep, which seems very odd and random. I have just started to take it, so I don't think it's kicked in yet. Is it my imagination, or is it causing an upset stomach? I think I've also started to switch back to a regular diet too soon after my surgery, which is not helping matters. Starting tomorrow, it's back to the "all kale, fruit, and oatmeal" diet for me. But I digress. I guess my question is, which I haven't been able to answer by reading other threads, how soon is too soon to try to get off the pain meds? I guess that's very individualized, and as for my own body I can't even figure out what is an acceptable pain level. I think a lot of what I have been classifying as pain, is actually just an awareness that there's now a giant piece of metal taken up residence in my body. I can feel it in there, preventing movement, checking me if I try to move an illegal direction. I'm not sure I should be classifying that feeling as pain exactly. I think sometimes I should just be sucking it up and getting used to it. Would love to hear some feedback from the gang on how everyone knows when and how much to medicate.

And on a positive note, I created a new invention yesterday. Before the surgery I bought myself various tools in preparation. One that I did not end up needing, was the "bottom buddy" (apparently I have long arms.) But this silly plastic stick made a perfect tool for me to duct-tape my razor to, and now I can shave my legs! It has been liberating to no longer be confined to the same 3 long tank/jersey dresses I bought pre-surgery to cover up my unshaven legs. It has been hard to find clothes though that don't bother the incision, which burns and, of course, feels like fire ants are attacking it. Pull-over style dresses work best. And now at least my repertoire is expanded a bit to include short dresses. Right now I can't imagine ever wearing pants again. But it's hard right now to see ahead to the fall, and the cold weather, and to the new-spine future.

It is now 5:15 AM. I've also been suffering from nightly bouts of insomnia. Sleeping on my back is not conducive to sleep. But the one time I tried sleeping on my side was excruciating. But I've managed to now wake up both the cats, so I think it's time to try to put all three of us back to bed.

Thanks, everyone, for your encouragement. I can't tell you all how much I appreciate knowing I'm not going through this alone.

[the_baroness]

I picked up laundry today with my grabber sock by sock....talk about slow.
Susan

PS: I grew up in Massapequa Park, and colleged [I just made up that word and spell check doesn't like it!] in NYC the left to see the world!

Susan, I am also using the grabber, and the dressing stick, to do laundry! Socks are the worst. They keep trying to escape.

[leahdragonfly]

weaning off painkillers

Hi there,

You sound great for being so very early post-op, but I really think you are pushing yourself too hard! You will not recover any faster by pushing yourself. Your body needs a tremendous amount of time and energy to heal, so I want to suggest in the kindest way possible that you settle in for the next several months and allow your body to heal.

At two weeks post-op I was wiped out by taking a shower and getting dressed. I would recommend taking 2-3 short walks per day, of no more than 5-10 minutes each at this point. You can increase them each week by 5 minutes. Please don't do so much that you feel you've overdone it. You are hurting your recovery by doing that.

Constipation is still a huge risk at this stage, so as you mentioned you need to keep close tabs on your diet. Since you are taking oxycodone you need to be taking a stool softener like Colace and most likely a laxative such as Miralax or Senokot. All of these are available at the drug store over the counter. You need to take these every day while you are taking regular narcotics.

You asked about weaning your narcotics. You should try to take your narcotics on a schedule around the clock. I also recommend taking a regular dose of Tylenol around the clock as long as your other prescription meds contain no acetaminophen. You will feel much better taking the meds on a regular schedule, then you can start to stretch the doses out by 30-60 minutes at most when you feel you are able to delay a dose. Don't skip doses or take them on a random schedule. If you can detail what you are taking now I can try to make a suggestion on how to proceed. (I have had 3 major spine surgeries as well as being a nurse).

If you discontinue your narcotics abruptly or go too long between doses you may notice unpleasant side effects such as sweating, anxiety, shakiness etc. Tapering off on an organized schedule is the way to go. First you can space out the regular doses, then you can start decreasing the dosages by reducing the number of pills taken each dose.

I think nearly all of us have struggled in the early weeks with insomnia. It seems to be a combo of effects of the meds with discomfort in bed. I was not able to sleep in my own bed because the Temperpedic felt too soft and unsupportive. I rented a hospital bed that was very firm and had to sleep on it for the first 4-5 weeks post-op. Others have slept in a recliner. Take naps during the day, and know that the insomnia is temporary.

At this stage you do not need to suck it up and be painful or uncomfortable all the time. To me it sounds like you are trying to go too light on meds and it is way too early for that. Please do your body a favor and take adequate pain control so your body has energy to heal.

Take care, we are here to help you!

[mabeckoff]

I picked up laundry today with my grabber sock by sock....talk about slow.
Susan

PS: I grew up in Massapequa Park, and colleged [I just made up that word and spell check doesn't like it!] in NYC the left to see the world!

I grew up in Oceanside and then went to NYU for college. I stayed on the east coast until 2011 when we moved to CA
Melissa

[titaniumed]

Baroness

Gayle did a great job at answering.....and I must reiterate that the constipation issue is not to be taken lightly....Constipation pain is one of the worst pains, and can creep up even if you are going every day. I had this happen to me, I was going every day and then realized that I was in BIG BIG trouble. Get yourself a bottle or two of Magnesium Citrate. Its sold over the counter, and is sold in a bottle. Looks like a soda. This is your fire extinguisher and will prevent a trip to the hospital. Have this handy and also buy a few bottles of pedialyte for restoring electrolytes. After the big event, you will be completely drained and feel pretty bad. Drinking water promotes peristalsis in the lower GI tract.
Its very important to be drinking water. Sip it all day long. Walking promotes peristalsis, and some say chewing gum also helps.
https://en.wikipedia.org/wiki/Peristalsis

In reading all the testimonials here through the years, it seems that prune juice is a favorite. Warm prune juice in the morning. You can also slam the citric,(orange juice) but could end up having heartburn.....I found that Zantac was the best acid reducer....Maintaining digestive health right now while on opoids almost take precedence over everything else. I have read that you should do everything to keep from having opoid constipation, even going nuclear is an option!

Did you know that castor oil was used by Mussolini as a torture method during WW2? Nice guy.....Todays trivia....(smiley face)

You are 18 days now....reduction of meds should be a goal but you are not 13 years old, so should be done carefully right now. Kids wean quickly, I don’t know how they do it. Its amazing.....must be the stem cells.....

Get a notebook and write everything down. Med intake, how much and at what time, food, water, bowel movements, cat awakenings etc. If you don’t, you wont remember. Reduction of any medication can be accomplished without withdrawl in 5 weeks. That’s a 20% reduction per week. I learned this at UCSF at the last scoliosis meeting and it really stuck in my mind. It’s a sort of parameter we can relate to, however each person is completely different. Extending times is the easiest way of reduction. Cutting of pills should not be done without permission. I was on Oxycodone and the pain was severe and was switched to Percoset. It’s the same thing only with Tylenol.

Our feelings of stiffness with a full fusion can be discouraging..... I thought I would never be able to reach my feet. That was wrong......but it took a long time, and scoliosis surgery teaches patience. It does this on an extreme. I have the ability to watch grass grow now. (Actually, it’s the weeds in the back yard) Hey, that was funny, I don’t care who you are....(smiley face) Take things day by day.

You are in a rapid healing mode right now.....your body was just run over by a truck and has to heal. It needs protein, nutrients, and rest and positive thoughts. Remember that this is just a hard chapter in a book and you will get through all of this.

Ed

[titaniumed]

I used the word “slam” in referring to citric acid I guess since its so powerful....

I used to work at a place 30 years ago and we made orange juicers on an industrial scale. This machinery would squeeze each orange or grapefruit in 1 second, so 60 per minute. That a lot of juice!

The machines would come back after 3 months and we would have to replace many of the parts that were made from 316, 304, 17-4PH etc. The rate that these stainless steels would be eaten away was hard to believe. Citric acid is extremely powerful stuff.

They have also replaced or added the critical process of passivation with citric. This has replaced using Nitric acid, which is slightly more “green”......Man-o-man!
http://en.wikipedia.org/wiki/Passivation_(chemistry)

Ok, so replace “slam” with “sip”. I can imagine that orange juice is excellent for cleaning out the plumbing. Grapefruit is stronger.....

Ed

[Irina]

Gayle said it all and I just want to add a few things. Write down the times and dosages of the meds you take. My memory was shaky and I needed to write everything down.

As far dressing up goes - it will become easier and easier to do. I know that you prefer dresses, but if you want to wear shorts or pants with sneakers, my advise would be to put pants on first and socks last. It is easier to slide your bare feet down the pants. I used a grabber when putting my pants on and dressing stick was not useful for that. I used a dressing stick to take off my socks and flash a toilet so that I didn't bend :-) Now I keep this tool in the car. When I fill my car with gas, I use the dressing stick to pull the gas lever, which is on the floor. Back to the pants - use your grabber to kind of smash the pant leg so that you have it all in the jaw of the grabber, put it on one leg, then repeat the same with the second leg. At about three months post-op I went to Gap and tried putting on skinny jeans and even jean leggings just for the heck of it. I thought it would be impossible to put on regular jeans, but I even managed to squeeze myself into jean leggins (not that I liked the look of it).

You'll get there, just be patient. Two weeks is very early - take your painkillers so that you are comfortable and don't push yourself too much.

[jackieg412]

Gayle said it great and Ed is an amazing source of information. You will slow down your healing if you go at it too soon. My story--I was doing so well--really thought so anyway--I was forced back to work at 7 weeks.{There is a reason--I just can't say it yet}. I thought I could handle it--- Tried to rest in beween--I had a whole lot of rectrictions--- I only made it longer to feel really better--to the tune of about 1 1/2 to 2 years. So we really do not help ourselves by too much pushing.
Alot of things get better slowly.
As far as getting dressed--still difficult--but I found out if I put my left leg in pants first -I can put them on OK--If I put my right one in first--I will need help as I can not reach. We learn as we go .Yesterday I was at my son's house and in the bathroom{IT IS REALLY SMALL} I dropped a shirt that I was changing into--not enough room to squat down to pick it up--so I kicked into the hall{MORE ROOM} and then got the shirt. We learn as we go!

[Doodles]

Welcome to the forum! You are doing some amazing things--a little early it sounds like to me too. Listen to the above pros--they know and are very wise! My husband and I actually spent our first married summer in Brooklyn, right off Flatbush Ave. because he had an internship. For 2 Iowa kids it was quite the summer--we had a great time. Take care of yourself and best of luck to you. Janet

[the_baroness]

Great advice!

So, my take-away here is (1) don't skip doses (2) keep trying to eat healthy (3) don't try to walk so far all at one time (4) be kind to myself (5) I will someday dance again.

However, not sure if I will ever attempt to wear pants again! While I like my new shape, it still feels completely foreign to me, like I'm living in someone else's body. I'm actually somewhat afraid to try on pants. Pants never fit me properly before because of the flatback. I don't know what to expect. And right now I'm way too inflexible, and the nerve pain in my back feels too raw to have any clothing pinching or rubbing. Eventually it will get cold here, and then I will have to wear pants again! And eventually I will have to return to work. But everything feels in a state of suspended animation. That's probably the painkillers. But I've never been this inactive, for this long, before in my life. I'm generally a very active person! But I took everyone's advice today, and when I wasn't on my walks, I laid on the couch. Felt strange. However, the cat was thrilled to have a person-sized bolster to lean on.

Speaking of bolsters, sitting in chairs sucks. I've tried a variety of pillows, and nothing makes it feel any better. The only chair I've tried so far that works for me is the seat on the B63 bus. The seat is relatively flat, and the back is at a 90 degree angle, and the back is also short enough not to go past the top of my fusion at T10 where the rod is protruding. Things touching the protruding rod is a relatively minor pain, though. I've taken the bus now twice, which was glorious, because I got to feed my sensory-deprived eyes with shopfronts and people and cars and activity and stuff. The handicapped seats on the bus were actually quite uncomfortable though, because they had tall backs, and acted as tuning forks for the engine and pothole vibrations that shot up my hardware like, well, like a tuning fork. It's the regular people, forward-facing seats that were so comfortable. When I get tired of lying on the couch, maybe I'll just ride the B63 bus all day, back and forth, from terminus to terminus...

I'm very excited because tomorrow I need to walk to the post office to pick up a package. It's good to have an activity, a purpose. I have not yet tried to push the shopping cart. Tomorrow will be the shopping-cart+new-spine maiden voyage. Wish me luck!

[leahdragonfly]

Baroness,

I sent you some PM's also.

Please please don't over do it!!!! Going to the post office to pick up a package at 2 weeks is just too much in my humble opinion. I'm worried about your shopping cart--are you able to push it comfortable with your back completely straight? The ones I have seen are pretty low and would involve prohibited motions to use. Please be careful.

I completely get how bored, isolated, lonely you are at home. I've been through it twice now in 2 years. I am NOT a TV watcher nor a couch potato, and the long recovery was very hard for me, too. I felt very impatient. Especially after I broke my rods and had to have an 8-hour revision. But please, find some amazing series to watch, make a list of movies, go for a 2-3 short walks per day (5-10 minutes), listen to music on the couch with the cat, and eat healthy food.

That's really all you should be doing at this point. Let your body heal. You only have one chance to get the healing right.

[the_baroness]

I can take a hint!

Ok, my general policy is, if more than one person is telling me the same thing, then I realize there's a good chance that I'm the one who is wrong! I have given in, and I'm now resting in bed. Even my husband has chimed in and told me to take it easy. And I've noticed he's sneaking in and doing the laundry before I can get to it, which is a sure sign. And my body seems to be trying to send me a message as well. I didn't wake up today until 11:00 AM! I never sleep in like that. I guess I needed the rest. Or maybe the Gabapentin is kicking in. The bottle does say "May cause drowsiness." Whatever the cause, it felt good to finally sleep for an extended period of time. Hope you all are having a great day.

[susancook]

Question, how long is a short walk? How far should I try to walk each day? Pretty much everyday I find that I over-do it, one way or another. I need to figure out how to get myself to chill out!

I also have a lot of questions about painkillers. My doctors office seems to want me to taper off as soon as possible. So whenever I am feeling ok, I try to substitute Tylenol instead of the oxycodone, or take a nap rather than take a pill. I have also just started to take Gabapentin, to deal with what I like to refer to as "that feeling where fire ants are attacking my back." I also have a lot of pain in my right heel at night when I sleep, which seems very odd and random. I have just started to take it, so I don't think it's kicked in yet. Is it my imagination, or is it causing an upset stomach? I think I've also started to switch back to a regular diet too soon after my surgery, which is not helping matters. Starting tomorrow, it's back to the "all kale, fruit, and oatmeal" diet for me. But I digress. I guess my question is, which I haven't been able to answer by reading other threads, how soon is too soon to try to get off the pain meds? I guess that's very individualized, and as for my own body I can't even figure out what is an acceptable pain level. I think a lot of what I have been classifying as pain, is actually just an awareness that there's now a giant piece of metal taken up residence in my body. I can feel it in there, preventing movement, checking me if I try to move an illegal direction. I'm not sure I should be classifying that feeling as pain exactly. I think sometimes I should just be sucking it up and getting used to it. Would love to hear some feedback from the gang on how everyone knows when and how much to medicate.

And on a positive note, I created a new invention yesterday. Before the surgery I bought myself various tools in preparation. One that I did not end up needing, was the "bottom buddy" (apparently I have long arms.) But this silly plastic stick made a perfect tool for me to duct-tape my razor to, and now I can shave my legs! It has been liberating to no longer be confined to the same 3 long tank/jersey dresses I bought pre-surgery to cover up my unshaven legs. It has been hard to find clothes though that don't bother the incision, which burns and, of course, feels like fire ants are attacking it. Pull-over style dresses work best. And now at least my repertoire is expanded a bit to include short dresses. Right now I can't imagine ever wearing pants again. But it's hard right now to see ahead to the fall, and the cold weather, and to the new-spine future.

It is now 5:15 AM. I've also been suffering from nightly bouts of insomnia. Sleeping on my back is not conducive to sleep. But the one time I tried sleeping on my side was excruciating. But I've managed to now wake up both the cats, so I think it's time to try to put all three of us back to bed.

Thanks, everyone, for your encouragement. I can't tell you all how much I appreciate knowing I'm not going through this alone.

Hi there! Gayle had great advice. Lots of thoughts from my experience:

How much to walk? That is very individual. If you find yourself tired and hurting....that was WAY too far, so for the next week, cut way back and then add A LITTLE bit to your twice daily walk. You remind me of Gardenia who pops in and out of the blog as she sometimes did not pace herself. I on the other hand have difficulty getting moving at all.

pain meds: I am editing this as I just read Ed's post and realized that you were just 18 days out from surgery! Woman, slow down! If you don't take your pain meds then you sit a lot because you are in pain and that isn't good for healing. I don't understand your doctor's office wanting you to decrease meds. I don't know when others stared decreasing meds, and I am sure that that info is here somewhere, but personally, I started at 2 months. I decreased slowly and continued with Colace and Senacot. Advice for slowly decreasing meds when you do decide: instead of substituting the Tylenol for the oxycodone, cut the oxycodone in half and take the Tylenol. My doctor advised taking 500 MGM of Tylenol twice a day since discharge.

Congratulations on having better genetics than I have in having long arms and not needing the butt wiper!

Re: you can feel the metal there preventing movement: STOP testing it and doing those movements! My goal is only to have back surgery ONCE, so if that is also your goal, this is the max healing time, so restrict all movements and let it heal. My doctor gives everyone a brace to wear for 6 months, so I move very little.

Ants in your back: have someone check your back for erythema or redness. Maybe you have a mild infection. If not, then yes, it probably is the regeneration of nerves. I occasionally get some freekie strange electric sensations. I believe that it takes a good 2 years for our backs to heal and figure out how to settle in to the new shape.

Take care, Susan....now 3.5 months out