New here but a long time reader! 3 weeks post-op and struggling

[Jjohnsonphd]

Yes, I am recovering in La Jolla. It worked out beautifully as my parents have a summer house here that was my grandparents. We come here often in the summer because I live in La Quinta (down the road from the famous Coachella music fest) and it is terrifically hot there in the summer. So I am certainly not in my real life yet but will have to face reality soon. I was so fortunate to be able to stay close to my doctor and not have to do that 2.5 hour drive home until I am further out.

I don't know if it is good or bad my vision complication has not been reported here. I can't find anything on the internet either. My ideas are my optic nerve got compressed laying on my face for 6 hours and my brain is not dealing with the anasethesia and the trauma of the surgery. I have has sleepy eyes where it is hard to keep my eyes open and focused after surgery but it always goes away the first day. And now it has been a month. My surgeon hasn't had any patients have this happen either.

I know the pain meds issue is a big one that everyone wrestles with. No movie withdrawal drama for me! I will take it day by day.

And sitting!! Horrible! I can feel both rods acutely when I lean back sitting and it totally grosses me out!! Besides it hurts and I feel almost queasy. I am a psychologist and I am a tad bit worried how and when I will ever return to my chair at work. Fortunately my patients are not pressuring me but I am not sure I will be ready at 3 months as I planned. Which would also entail driving and I certainly can't do that. Breathe, right? The surgery is over with and I don't have to go to bed with that pit in my stomach anymore.

Thanks again all!
Jana

[titaniumed]

Jana, Sitting is hard. I could only sit for a few minutes at a time for the first few months.... But it does get better.......Most of the time, I do not lean back when I sit in a chair, I can, but I don’t. Many have commented on my perfect posture, I don’t have much of a choice since its hard to slouch. I also have to sit erect since my neck is completely wiped out now. No leaning tower of Pisa happening with me......Any time you lean, you are creating tension. I try to avoid this and stay perfectly vertical.
https://en.wikipedia.org/wiki/Leaning_Tower_of_Pisa

It takes time for the incision site and 4 inch wide surgical zone to heal and toughen up.....I used soft pillows quite a bit at home, and in my car. I had to have one behind me in the beginning, after a year or so, it wasn’t necessary.

I started driving after I was off meds, and just driving a mile to the store would tire me out.....I own a 31foot RV, and when you drive an RV, you don’t want to be forced into backing up in a parking lot. When I would park the car, I would always pull through to the next space so that I could simply pull forward when leaving. It eliminates the necessity of having to back up.....you want to avoid backing up when you first start driving.

Yes, breathe! and think ahead......think healing thoughts! Having a positive attitude is a huge help. Never look back or think back, “I shouldn’t have done this” it isn’t helpful. What’s done is done, move forward.

I was beat at 3 months.....I lost 40# and was re-gaining weight again.....Work from home is great, if need be, go to the office for 2-3 hours and set it up so you can leave or lay down someplace....At 3 months, I was jumping out of the nest for my first flights, short trips to places. Some friends came with their RV and took me to Virginia City for a few hours walking on the old planks of the sidewalks of this historical old western town. After, I was whooped and it took me 3 days to really recover. The crooked planks made for an uneven walking surface thus really moving the soft tissues in my back. It’s a slow recovery....

Good news on La Jolla. The commute would have been taxing if not impossible. That’s not an easy drive.

Jackie mentioned Gabapentin.......Many ladies here years ago reported taking this medication, I don’t know if you are taking this one, I thought that it was quite powerful and didn’t like it at all. I tried this medication for my neck years later, didn’t take it in my scoliosis recovery so I was not on an opioid. Mixing of medications is complicated.....

Eating is important.

One day at a time

Ed

[Jjohnsonphd]

Nice to hear from you Ed. It was a rough day, feel like I took 3 steps back kinda day. Just could not wake up, was a couch log besides a few obligatory walks I felt I needed to take. The interesting thing is the pain wasn't real bad, I just felt like a train ran over me. I am guessing this is the fatigue from the cellular healing and yes, the dang pain meds. I don't think I will normal until I am off them. I don't take anything else besides the lovely constipation cocktails. No gaba for me. I agree that sitting is easier not leaning back. I don't have the sensation of leaning on a corpse's back.

I felt defeated and depressed today. I had thought I would be feeling better at 4 weeks but no, I sure am not. Tomorrow will be a better day. Maybe I will try sitting in the car and taking a short drive. I have not left the house yet! Is that normal? I have no desire to leave and everything hurts if I am not laying down.

Onward! No looking back, you are right about that!
Jana

[titaniumed]

Funny how we use the truck analogy....My surgeon told me that when I get done with you, you will feel like you were hit by a train and hit with every axle. Ok....(preparing for pain) He was right.....I didn’t start posting here till I was 3-1/2 months post, and my e-mails were short up until that point. You can tell by posts or writings if someone is in pain, or at least I can.

Heck, I was pretty used to pain of scoliosis, and the pain that scoliosis along with degeneration offers, it’s a double whammy when DDD sets in. As long as you realize what has happened, and know that things can only get better, it is a relief. Up and down days just like a see-saw will happen for a while, the way you know you are doing better is that there are less down days.

I wouldn’t drive a car or operate any machinery on anything that alters my judgment.....I am around very large extremely powerful metalworking machinery, and have respect since they are Unforgiving if there is an accident. I also watch others at work to make sure they are feeling good, if I see someone and they look tired, I will send them home. It doesn’t matter what the excuse is. Just being tired can get you into trouble, and hurt. I don’t really want to have to explain why an accident happened, or feel any guilt because safety was ignored. The same applies in a car. I am a safer driver after my surgeries.....and you don’t want to get into an accident having scoliosis. It can send you right back on the table again. I don’t think there is any argument on this matter, my doctor say’s this or that.....Its just better to try to stay out of cars for awhile. (smug face)

Just being outside is a huge help, and a healer of mind, body, and soul. My surgeons orders were printed in 1/2” black bold letters, walk OUTSIDE. All of my backcountry skiing incorporates the outstanding views, which offer a sort of healing zone, and a really good thinking area.

Back when I lived in San Diego,(1981-1984) I would go visit the Scripps aquarium just north of La Jolla. Of course, I became a diver 20 years ago due to scoliosis, and have an appreciation for the ocean. Its another world down there and a great place to transfer your thoughts. A zero gravity, weightless world, with no stress, no noise, no worry. Just bubbles, and rubber. LOL Whew! that was funny! You have to be creative to crack jokes at an aquarium.
https://en.wikipedia.org/wiki/Birch_Aquarium

Prior positive experiences help us with things, I think back to 1997 when I was out in Maui. Out on a dive boat, this captain decided that conditions were fantastic for a drift dive. That’s when you go with the flow of the current, and basically get that free ride. It was my first drift dive, and thought it was just fantastic cruising by all the reefs and fish in the Lahaina channel. I was HOOKED and knew I had to continue with more dives. We ended the dive, and while sitting on the back of the boat I was thinking about Jacques Cousteau and what a great life that must have been......We all watched his films years ago. After I went back to my hotel room, I turned on the news and they announced that Cousteau had passed away....The day I got hooked on diving was the day he passed away. 06/25/97 I will never forget that day.
https://en.wikipedia.org/wiki/Jacques_Cousteau

Ed

[susancook]

When you sit in the car, take a soft pillow to put behind you.
Patience.
Get out of the house....only to sit outside and breathe the fresh air.
Susan

[Back-out]

"Getting outside"

Getting outside...And walking.

Reminds me now that I am finally nearing my surgery, of one of many niggling questions I've had since the start of my investigation - what does one do if the operation takes place in the Winter (in a Northern state, not Hawaii!)? I'd been hoping to arrange it for summer, but needing to rely on a son with a restricted schedule, dictates it's to be in October - if I'm approved.

I can't figure out how I can walk - ideally in Nature that time of year - or outside, period. Last Winter was mild, but rumor has it (Hello, Old Farmer!) that this coming one will be a doozy. One of the factors that delayed attention to other medical problems I wanted/needed to take care of before the spinal op, was breaking my leg on ice in March of '15. My first thought was how lucky I was not to land on my head (like Dr. Atkins!), however it definitely made my spine worse. What's more, as the time approaches, I'm permanently reminded of how crucial it is not to fall again, all the more likely outdoors. Winter is treacherous here, and I live on a hill.

I've been told that walking is the primary rehab. Mall walking doesn't seem very inspirational, though and my house certainly couldn't provide space to exercise. I guess a treadmill is safer, if acceptable, and maybe I can read at the same time (?). As for the snow and ice, I guess I'll have to be sure to park in the garage rather than the carport to avoid approaching the car outdoors. That WILL make it harder to get to it, though, since it's only approachable by stairs - also to carry groceries upstairs after shopping.

Whenever I can climb stairs, that is. Or drive. Or carry groceries. (Say, is stair climbing - carefully - good exercise, kind of like a stair stepper?) Is there a long list of average activity/movement restrictions for various periods - perhaps also various fusion lengths? I don't want to bore you all with my rehashing all that. I'm sure everything's been asked more than once. We all tend to want to know mostly the same things.

PS Jjohnsonphd, wishing you all the best. I'm sure three weeks out is a very raw period in recovery. I can remember one member posting that in retrospect the first three months were "just a blur" owing to pain and trauma, physical and emotional.It definitely seems to be a "this too will pass" kind of issue for most. BTW I was trained as a psychologist, too.

[Back-out]

Meds and driving (and -OK, weight loss)

Ed, I've been taking opiates for a long time. Mostly, not much as ibuprofen (4/day) seems just as effective with the opiates to make the pain bearable. (10/325 Norco one/day unless something else is going on or I'm obliged to go off ibuprofen.)

You say you didn't resume driving until you were "off the meds". If I were to hold myself to that standard, I'd never get out. In fact, I find pain and fatigue from lack of sleep (from pain) to be more hazardous to driving than any meds I've ever taken to date.

Was that restriction because you were taking more powerful narcotics (Dilaudid?)

Also, this is the first i noticed your mention of a 40 lb weight loss. I know weight loss is common, but unless you're VERY large, that's a helluva drop. Perhaps I'm naive, but why DO people lose so much weight? Speaking as someone who just lost 20 lbs to be healthier before surgery (not just this one). Note, that I have a healthy appetite, and have never had a problem maintaining weight - also that medications don't take my appetite. Heck, although I now weigh five pounds less than I did at 16 - alas, I'm five inches shorter! ("I'm not overweight, I'm undertall" doesn't seem as funny to me anymore.)

[Jjohnsonphd]

I am still on Dilaudid and I am 5 weeks post op tomorrow. I see lots of patients on long term narcotics who drive. I will be careful about it. Obviously, my vision issue is a huge problem and I won't get to drive until that is healed. But at this point, I would never drive a car. I am so stiff and can not move like all like a normal person. My 4 year old likes to "walk like Mommy" which is basically how an 85 year old might walk. It made me laugh but it is the sad truth! I have 2 friends I met who had my surgery through my surgeon and one drove at 2 months and the other said 3-4 months. Tonight I semi-prepared dinner with my mom (big shift even from last week) and I am on a cane now. If I walk outside, I will still take my walker because we are on a big hill. I heard no walking on the treadmill because one trip and your in big trouble. My surgery friend rides the stationary bike.

Walking outside is ideal like Ed said but if you can't, ask your surgeon what they suggest. You feel real ginger in your new body. Your back is so straight and tall, it is a trip. You move slow and carefully. So yes, I will hold off driving in So. Ca as long as I can!

Healing day by day,
Jana
PS meditation is helping me relax. I also use Dr. Weil's 4-7-8 breathing technique. Loved that before the surgery when I would feel scared and worried.

[Back-out]

So you're replying to me and helping me, already, Jana! Thanks!

I too love Dr. Weil's breathing technique. Meditation, lying down maybe. I was in a meditation group, until all hell broke loose with my health - not counting the spine. No position worked.

Wish I were in Southern CA, for lots of reasons! Here in Central PA there simply aren't any adult scoliosis surgeons (or much of any specialists). Even ten years ago, i was turned down at U. Penn. The nearest surgeons for my reputedly complex spine, are a five hour drive (and I can't drive in NYC). That is, except for Johns Hopkins, where I was turned off by the surgeon. The travel is very taxing and expensive, especially counting the cabs and hotels once I'm there.

If you remember, what was the fusion of your scoli friend who was using the exercise bike? I'll be looking at (probably) T3 to the pelvis. Scary about the treadmill, especially as I am coping with foot-drop on the left side (from nerve impingement). I was just about to replace the one that died two years ago for spine post-op - also so I could keep rehabbing from knee joint replacement which I had three months ago (my scoliosis limited my progress there).

Perhaps I should double check with my surgeon. I asked when I was there (a different surgeon's PA had warned me against them because "the vibration inhibits fusion") and they said a treadmill was OK. Perhaps, they forgot about the foot-drop when they encouraged me, though. (It is moderate - exercises seems to reduce it a lot. At least, I don't need that special boot. Still,, it does increase fall risk even without the surgery).

I'll call the office and ask before I get one, making sure I remind them of that condition (I'm now sadly sure they will warn me against it). But then all walking might be risky, from that POV..

You sound so much better - the progress is very noticeable! Very glad!

[Jjohnsonphd]

Hi Back-out,

I meant to reply about the weight loss too. This also had me baffled how it happens. So this is how it was for me. In the hospital, I was on a liquid diet for 7 days, really ate zero the first 2 days. I literally felt like I would choke if I ate regular food. I still need to cut meat up very small and am careful to take small bites. My throat feels constricted. The weight loss really is you just have no appetite and you get full very fast. I also had to eat in a semi-reclined position until recently, which makes it hard to eat. Sitting was so painful that I could hardly focus on eating.

I have no desire to eat anything heavy. I also can't tolerate coffee (which I normally love) or anything with a strong taste. The pain meds mess with your appetite for sure. I love yogurt, cottage cheese with pears or peaches, smoothies and frozen yogurt. For dinner we have been grilling meat and roasting veggies. I eat 3 meals a day but it is much less food than normal and I am not snacking. I do drink a ton of water.

So, with that said I am 2 inches taller, my midsection looks normal and not all squished up, and the "back fat" is gone because my spine is straight and not folding on itself. I last weighed in 15 pounds less that the day of surgery. I think the hardware weighs 2 pounds so I have lost 17 pounds then. I will not lie, it has been a gift to get those nagging 10 pounds off I have wanted to lose. I know I have also lost muscle- in my legs I can tell there is atrophy. Most I have read gain the weight back but I hope to enjoy my new figure! I actually look the best at age 42 than I ever have before and I am excited to get back into exercise, walking, and playing with my 3 boys.

Nutrition is important and I heard the Costco protein shakes are awesome. With the weight loss, plan to wear very soft, cozy clothes that are loose. I wear pj bottoms and a T-shirt daily, fluffy socks are a must!
Hope that helps!

[Back-out]

Jana, Thanks again!

But -- AKKKHHHH!
That hospital stay - nobody complains about the food, I guess!
I HAVE heard that one can get paralytic ileus (the bowels just stop moving, hopefully temporarily) from this and abdominal surgery so that hospitals may actually withhold food by mouth if that occurs.

Since I already have colonic hypomotility (bowels slow - hard to empty them, but not constipation per se) and other problem issues from nerve pinching, I can see this happening, In fact, even after the knee joint replacement, things were very slow for a good while ("And HERE'S your colace, dear" - NOT enough!).

I imagine the weight loss comes from many sources. All in all, I suppose I oughtn't look forward to losing too much more in advance of the surgery. When a lot of weight comes off at once in later life, things SAG.

PS Thinking all the more, I need to have a hiatal hernia repaired BEFORE the spinal op. It already makes swallowing solids hard. Glad you were so descriptive about your post surgical dietary needs!

[titaniumed]

Hi Amanda, Good to see you posting again.

I come back from work and I see the forum is quite busy. He he Some interesting points on all the threads and I happened to see that you are thinking about HSS? I didn’t know you went to NYC...If the forum picks up, sometimes it gets very busy, I cant keep up especially during the week.

I realize that tolerance increases when taking meds but being against the law, after an accident that includes bodily injury, in a courtroom with a jury, you will lose. Nobody wins these cases, and in Nevada, its criminal. I believe its 25 years on a bodily injury case. Its easier to get someone to do the driving and actually, I didn’t do much driving for a really long time. You can really save money, that’s for sure.

In the hospital I had injectable Dilaudid, Lortab, and Morphine, but my orals at home were Oxycodone, and Percoset. 7.5

I was 165# when I went in and was around 125# a month later. I actually turned grey and people were freaking. I did a lot of pacing and I just need a lot of food. My appetite did increase months later, and now I’m an animal. I will eat dinner, my neighbor will call and offer dinner, and I cant say no. I don’t know, I guess I burn a lot of calories. My right arm just withered away since my shoulder and arm were broken. That was probably at least 10# of weight loss. I was also NPO in the hospital for 10 days. (no food by mouth)

I would choose a spring or summer surgery because I was freezing all the time on meds. I set gas bill records with the heat set at 78 degrees.

I was walking outside in February but it wasn’t snowing down here....Funny, I remember freezing in the house, but not outside. ???

Ed

[jackieg412]

I also lost a lot of weight. I think part of that is because our bodies need so much to heal this surgery that we burn calories just in the healing process. Also it took so much energy to eat that sometimes it just wasn't worth it.
Nice weather makes it easier and Sun feels good because the cold is horrible on your body after this surgery. I had it in winter and I live near Chicago. Very difficult but I managed to walk when I could get out. Not on snow or ice. Do not use a treadmill it is too dangerous and that type of walking hurts.

[mistybowe]

Also, this is the first i noticed your mention of a 40 lb weight loss. I know weight loss is common, but unless you're VERY large, that's a helluva drop. Perhaps I'm naive, but why DO people lose so much weight? Speaking as someone who just lost 20 lbs to be healthier before surgery (not just this one). Note, that I have a healthy appetite, and have never had a problem maintaining weight - also that medications don't take my appetite. Heck, although I now weigh five pounds less than I did at 16 - alas, I'm five inches shorter! ("I'm not overweight, I'm undertall" doesn't seem as funny to me anymore.)

I actually asked my surgeon about weight loss in the post-op period because I had read about it here as well. I am 5'3" and weigh 125 so I was concerned about any big weight loss and he said that he hasn't seen that at all in his patients. Weird. I guess we shall see!

[Jjohnsonphd]

Jana, Thanks again!

But -- AKKKHHHH!
That hospital stay - nobody complains about the food, I guess!
I HAVE heard that one can get paralytic ileus (the bowels just stop moving, hopefully temporarily) from this and abdominal surgery so that hospitals may actually withhold food by mouth if that occurs.

Since I already have colonic hypomotility (bowels slow - hard to empty them, but not constipation per se) and other problem issues from nerve pinching, I can see this happening, In fact, even after the knee joint replacement, things were very slow for a good while ("And HERE'S your colace, dear" - NOT enough!).

I imagine the weight loss comes from many sources. All in all, I suppose I oughtn't look forward to losing too much more in advance of the surgery. When a lot of weight comes off at once in later life, things SAG.

PS Thinking all the more, I need to have a hiatal hernia repaired BEFORE the spinal op. It already makes swallowing solids hard. Glad you were so descriptive about your post surgical dietary needs!

Yes, I would advise to get any surgeries out of the way before this one. You will want to recover after at your own speed and not have to worry about going back in for anything. The bowels could present a challenge for you but I think they do for everyone. After surgery, I had no connection with my bowels. I couldn't try to go if I wanted to. They flooded me with all kinds of meds to make me go, but like I said I was hardly eating so I was t too worried. I had active sounds in my stomach and I could pass gas, which they were happy with because it means you don't have a blockage. I went a little post-op day 5 after a suppository, but it was very watery. I did not go again until Day 13 post-op! I was starting to worry by then. It just takes a long time to wake up your GI track. Walking helps, lots of water and warm prune juice mixed with a little OJ was my "cocktail". It will all come together, just try to relax and not stress too much after surgery. Just get comfortable and plan to nap a lot!