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Jjohnsonphd
07-07-2016, 05:19 PM
I have been meaning to write for so long! I found this site two years ago and have read through so many if your uplifting and informative threads. So very grateful you have put your experiences out there. I felt very prepared and educated going into this surgery. Then, as you know, your own journey begins and it is a roller coaster ride. Things I was so worried about went ok and other things pop up that challenge the hell out of you. I met my surgeon over 2.5 years ago after my third baby came. The pregnancy went fine except I could hardly walk at the end, my back hurt so bad and I had shooting sciatica pain down a leg. The back pain still lingered after and I realized I needed to get a scoliosis specialist on board again. I knew my curves glad gotten worse and I was 2.5 inches shorter than I was in my 20's. I was floored when he said I would need to have surgery, I thought I had escaped it my teen years. After lots of research and realizing how my health would negatively be impacted, I decided to proceed with surgery.

I decided the following June of 2015 would be the best time. I had a year to prepare. One month prior to surgery, I had the routine MRI done on my back and my surgeon came into the appointment looking the news. I had a slipped disk at L5-S1 that would need to be fixed before I could have my big surgery. I felt like Christmas was taken away, it was so disappointing. So I had that surgery last June and it was very easy to recover from. This June finally rolled around. I had noticed changes with my back the last year, primarily more discomfort and daily pain after doing housework. I knew it would only get worse. The surgery went very well, he got an amazing correction and my big curve is below 20 degrees but visually I look straight. I didn't lose much blood and I didn't get a collapsed lung, two things I was worried about. I never even thought a moment about my vision.

When I woke in ICU, I was not alarmed I could not see out of both eyes at the same time. I could see fine looking out of one eye and squinting the other shut. This has happened after prior surgeries. I feel so sleepy and drugged when I wake up that I just can't get my eyes focused. It has always gone away sometime the first day. This time has been different and I still can't see out of both eyes. I see double vision and everything is jumbled. It has me so upset and worried. They did a standard neurological screen and an opthamologist examined me and both said I look ok and this should go away. I know I need to get in to see a specialist but this recovery has me totally home bound.

I was in the hospital for 10 days due to pain management struggles. I had no idea but apparently I beta olive pain meds very fast or they don't connect to the right receptors. My spine surgeon had to keep upping the doses and said I was on enough to snow a couple of large men. Everything seems to hurt with this surgery. I have never experienced such a struggle. Now I am 3 weeks, 2 days post and I can walk around the perimeter of the house twice and I can mostly conduct my own shower. I still find sitting off the chart uncomfortable and I just struggle with feeling a daily level of sick, dizzy, nauseous, and unwell. I have very little appetite and have lost 12 pounds.

Can I ask when you all feel like you start turning the corner? That your day isn't just ice packs, trying to get comfortable and taking short walks? I know everyone is different but I was running around with my 3 kids before this surgery and now I feel as disabled as possible. Sigh. I have stopped the OxyContin as of week 2 and right now take Dilaudid 2mg, 2 pills every 4 hours. I went down to one pill yesterday but hurt so bad at 2:30am I moved it back up to 2. They give me frightening dreams but good pain relief. I think they may interfere with my vision but I can't get off them yet. This is so hard. You all are brave soldiers and give me strength.

titaniumed
07-07-2016, 11:30 PM
Jana

Thanks for chiming in.....its nice to know who is reading some of my crazy comedy around here, I think with all we have to go through, its worth it...... Do what you can to laugh at least once a day. (smiley face)

I see you are at 23 days post which is early in your recovery......Balancing meds and pain along with the constipation that opoidís offer is never an easy thing. But, things do get better in time. Many report ďstepsĒ of improvement, I felt it at around 24 days, (No joke) Seriously, I suddenly felt an immediate 20% improvement overnight......Healing comes slowly, and these surgeries teach patience.

I find it very interesting that your single level ALIF last year went smooth......Glad that it worked out well. Not many people are done like this, pretty much a 12 month stage when you think about it.

There are not many posts about vision problems after surgery. I hope this subsides quickly for you. My vision is going downhill, but now have cataracts, its always something......Oh well....Meds do screw with our vision, and I felt that the effects of meds even after I terminated, took months. It was like a slow filtering process.....

Eating is so important..... I actually had to PULL that spoon up to my mouth. It really was an effort, a chore, and on meds its hard to eat but it has to be done.

Hot showers will help.....Hot water works well for bone and nerve pain.

We have some great people around here.....(Just wanted to remind everyone)

Stay tough, Hang in there

Ed

Jjohnsonphd
07-07-2016, 11:46 PM
You will laugh Ed, but I feel like I know you as I have read so many of your posts and replies. A familiar name and always calming, helpful answers. Thank you for writing! I had my best day yet with more walks and a better appetite. I hope my turn-the-corner is sooner than later. Yes, hot showers are a huge relief. When do most people feel ready to leave the house? The mere thought gets my heart racing, full panic onset. It feels like trying to go out while recovering from the worst flu ever. I see my surgeon in July 22 and it is typically always a wait to see him. I know, breathe. That is not tomorrow. I have time.

Yes, the ALIF was a surprise I didn't like receiving but I had noticed a dull ache down there every morning. I had no idea I had a slipped disk and my surgeon said I had to do that first otherwise my spine would not hold up the big fusion. He felt it was too much surgery to do it all together. The low back pain away after surgery but by then the scoliosis pain had kicked in on a daily basis. My surgeon was able to do the ALIF through the abdomen only and drilled in 2 big screws. He said it was like drilling into a piece of wood, I guess that is a good thing! I bounced back so fast, off pain meds in 10 days and was walking easily. This surgery is completely different. I don't know my new body and I am almost afraid of it.

One day at a time
Jana

titaniumed
07-09-2016, 05:06 AM
Jana, I basically ran out of the hospital at 10 days, was tired of playing doctor. LOL Anyway, my surgeon sent the crews out to my house everyday since I live alone, and the PT girl comes and says ďWow, your beat! How did you get out of the hospital?Ē I thought that was hilarious, and laughing can be so painful after surgery.....

My surgeon wanted me walking outdoors, and so she came with me outside for a little walk. We made it to the next house, and turned around and went back. That was quite a milestone. I would mountain bike 40 miles through high elevation in a 12 hour day, and here I am setting milestones walking 100 feet after my spine surgeries. The ski poles help a lot, I highly recommend them for added support and warding off the neighbors dogs.....They are scary after surgery, you DONíT want them jumping up on you. I walked outside a few times a day, for months. It took a long time till I made it to the second house, and a YEAR for a mile. My arm and shoulder were also broken from a high speed ski crash 10 days before my scoliosis surgeries.

Our bodies after surgery or surgeries are new to us, so tall, so raw, stiff, and different. I was so delicate, had a huge ileus, and my ankles were huge from the edema. Itís a one step at a time thing exploring our limits balancing the pain, like I said,my walks were short walks. The first 6 weeks were tough, I lost 40# in 40 days, turned grey and was having trouble with BMís. The constipation made me terminate meds at 6 weeks. I couldnít take it anymore.

Get some walking sticks or poles and go outside.....It helps. Donít fall. Falling will come, but not now.

I was doing heel lifts in the kitchen for DVT

I was also squatting in the kitchen since itís the only way to empty a dishwasher. One arm on counter, spine always vertical. Do not bend over.....keep it straight up like a flagpole. Straight up means no forces. Perfectly balanced.

I was also taking hot soaks in a wide deep master bath tub for pain.....Hot water works great for pain, 106 degrees F, I would check it with a thermometer. The water needs to be deep enough so you will float, and you donít want to bend. Just like the squatting, you want to keep things straight right now....no bending, lifting or twisting, at all. There is a lot of healing happening in the early stages of recovery. Drink plenty of water so you donít dehydrate.

Hang in there

Ed

mabeckoff
07-09-2016, 06:49 AM
I don't write as much as Ed does but he is right. It takes a while, a long while. You have had major surgery and your body needs to heal from it. Do Not Rush it. You are on the other side now . Walking is good. Do not get off the pain meds before you are ready. Otherwise, you will not be able to do anything, such as sleep, sit , stand.

Any questions, just ask
Melissa

Jjohnsonphd
07-09-2016, 05:46 PM
Thanks for the support. Ed, I can't imagine the broken bones days before that surgery. I know how long that surgery is planned out but you must have been like, seriously?? And elaborate on the falling part. I am still on a walker cause I have no depth perception with my messed up vision. Falling sounds very bad and scary.

Today is different. I have had such little pain I am not sure I woke up in the right body. This may be that day I feel the small leap towards better. Thanks Melissa for your encouraging words too.

How did it go either your first follow up appointment? Did you need to take x rays? Do you remember if it was very hard? I can't imagine going so long without laying down.


:)
Jana

titaniumed
07-09-2016, 09:32 PM
elaborate on the falling part.
Jana

I went skiing with around 18 people. It was going to be the last blast since they all knew I was going in for scoliosis surgery. All younger, expert skiers, I was their mentor on the mountain, and didnít know if I would be able to ski again. I was cooking around 50 MPH when I hit a ice ledge. That threw me down instantly, sort of like jumping out of a car and landing on your shoulder at 50MPH. It knocked me out, and I guess I awoke later to hear them yelling if I was ok? I couldnít respond at all, but heard the yells. They were below me so it made things extremely difficult for them to come over. I eventually got up and realized that my right arm didnít work anymore and was in a bit of shock I guess. I didnít even feel it. It was the back side of the mountain, so I got on the lift back to the front side, skied down to my car and removed all my gear with my left arm and drove home. The next week I went in to see my surgeon and told him that I wasted my arm. He pulled on it a little and told me that they were not deviating from the scoliosis surgeries since other surgeons were flying in. I guess I had quite the party of surgeons hanging out. Surgeries and Lake Tahoe, sounds pretty good doesnít it?

I learned how to do things with one arm....and my spine pain overrode the arm pain. It eventually fused, my humeral head was shattered, and fused with a lip on the ball which had to be ground round again in a shoulder surgery in October 2008, around 9 months post. I went through shoulder PT which was extremely valuable for the arm but also my back. The arm bike was great. Movement of the arms is important for spine surgery also. (along with walking) It toughens up the paraspinal and soft tissues that run over and around the screw heads and hardware in the thoracic.

Your approx 25 days, and you could have hit one of those improvement bumps I mentioned. I take it that this is a sign of healing, but we have good days and bad days so to stay the course and donít get too upset if tomorrow is a bad day. Itís a see-saw recovery.....which goes on for months. Along as there is constant improvement, you know you are healing.

Weaning sucks.....itís the hardest part. At some point you will think about this and try spacing med times. Cutting pills needs permission from your doctor, pill cutters are sold at the pharmacy. Donít pre-cut your pills.....Percoset can be cut, not sure about any others. You can read about why pill cutters are better than knife cutting online. Reducing opioidís will result in a change in pain levels, each person with its own result. Our CNS and other delicate systems are altered in ďmaskingĒ our surgical pain, this change is difficult. Upon my med termination, which was abrupt, pain rose up, and hot water helped. I replaced with jamming nutrients which was my light at the end of that tunnel. Again, I had no choice.

This is me skiing 3 years after my surgeries, Iím in the red jacket. I started skiing in 1962, and skied over 100 areas in North America, and heli skied in British Columbia. I competed in Big mountain on ESPN at age 42, which is pushing it. I was invited, not on the circuit. The old man on the mountain.
This video is an inspiriational example of a recovery for scoliosis surgeries, but on a skiing level, its kindergarten, easy peasy. You can search ďbig mountain skiingĒ on you tube to see what that is like.
https://www.youtube.com/watch?v=4tEypv3Vz8o

I destroyed my spine skiing. Too many brutal crashes through the years, a million high jumps, extremely hard landings, powder to my shoulders, but it was worth it. I wouldnít change a thing even with the problems with the body. Skiing is the best sport.

Old skiers pay their dues.....my ankles, knees, and hips are worn out. Iím in low level pain again.....no meds, what else is new? My neck is also roasted......High speed head plants are no good for the neck. LOL

Below is a photo of me at Lake Tahoe (after surgery)

Ed

mabeckoff
07-10-2016, 01:08 AM
Both my NC surgeon and my CA surgeon took X-rays at every follow-up visit. They had me take X-rays before I left the hospital.I went back in about three weeks for my first follow up and had X-rays then.

LindaRacine
07-10-2016, 12:48 PM
Thanks for the support. Ed, I can't imagine the broken bones days before that surgery. I know how long that surgery is planned out but you must have been like, seriously?? And elaborate on the falling part. I am still on a walker cause I have no depth perception with my messed up vision. Falling sounds very bad and scary.

Today is different. I have had such little pain I am not sure I woke up in the right body. This may be that day I feel the small leap towards better. Thanks Melissa for your encouraging words too.

How did it go either your first follow up appointment? Did you need to take x rays? Do you remember if it was very hard? I can't imagine going so long without laying down.


:)
Jana

Jana...

I think you'll find that you'll make significant progress by the time you're 6 weeks postop. Hang in there. This is a tough time.

--Linda

lduran
07-12-2016, 10:39 AM
Jana, this is a hard surgery and it will take time for your body to heal and begin to feel human again. I am a year out and still my body feels like it is not mine. I feel stiff and in pain for the most part, however I try not to take pain meds often. Be patient, read books, listen to music or find a game you like on your phone/ipad. Your surgery sounds pretty much like mine; I just think we are one level off. Don't rush anything and everything you are feeling is perfectly normal.
I agree with you, this board helps immensely (Ed is pretty witty) and the rest of the ladies very nice and willing to share. Sending you healing and tender vibes, Loretta.

susancook
07-12-2016, 11:11 AM
Welcome, Jana! "Turning points" in recovery are so personal, but just getting out of the hospital into "life" as I call it was quite big! Showering made me feel human again....washing off the hospital seemed symbolic.

I found that 6 weeks was big for me, then 3 months. Each time that I was integrated back into my old life, felt like a jump in my recovery. I encourage you to take short walks frequently and take daily naps. Basically, listen to your body. You have already come a long way! Also, be patient with yourself.

Best of luck with recovery. There are setbacks along the way or stumbles, but go every forward!

Hugs, Susan

mabeckoff
07-12-2016, 03:51 PM
You have gotten excellent advice so I will not repeat it.

It takes time, and you do have a new body but with time it will become yours

Melissa

Jjohnsonphd
07-12-2016, 08:51 PM
What an amazing group of supporters. Thank you everyone. I am taking all the advice and some days have been better than others. Today is 4 weeks post-op and I can't say I felt very good. I did walk up 3 houses which is on an incline and I got fairly dizzy. Glad I had the walker. My vision issue since surgery just lets me look out of one eye so it struck me how difficult transitioning back to real life will be. I am going to aim to see the opthamologist next week after my check-up with my spine surgeon. I realize now there is no timeline with recovery.

When do you decide to go down on pain meds? I take 2 pills of Dilaudid 2mg every 4 hours and I still have pain except when I am flat in bed. I certainly don't want to get off too soon.

Ed, amazing to see you skiing after this surgery. Gives me hope! I am looking at 6 weeks as a glimmer.

Jana

titaniumed
07-12-2016, 10:12 PM
Jana

Are you in La Jolla? I lived in El Cajon, Spring Valley, and Escondido 35 years ago....I realized that San Diego is not a great place for snow skiers.

I cant remember and maybe Linda knows, but we have not had any posts about eye problems here (after surgery)......I was warned about it, but just wondering, it doesnít sound pleasant. Please let us know what your docs say on this.

People have posted about dizzies and vertigo here. Hard to say while on meds, most think inner ear, but this happens. I had a few dizzy spells happen many months after I was off meds. They eventually dissipated.

The medication question always comes up. The when question.....and its probably best to ask your surgeon since none of us are doctors. I believe Doctors cannot dictate a medication regiment online....

I did hear a pain management doctor once say that ANY medication can be weaned without Hollywood type effects in 5 weeks. Thatís 20% per week.

Of course one has to wonder about the Hollywood statement and which movie scene he was thinking about? Julie Andrews in Mary Poppins, or the elevator scene from The Shining? I didnít hear any Chim Chim Cherie coming through, and I quit much faster...He he

Hang in there, it will get better soon....

Ed

jackieg412
07-13-2016, 08:11 AM
Are you taking anything like nerve relaxer. That can cause eye problems. Things like lyrics or gabapentin. A lot of meds cause dizziness. Just keep going as Ed said "eyes on the prize". It is definitely difficult but does get better.

Jjohnsonphd
07-13-2016, 09:21 PM
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
07-14-2016, 01:11 AM
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 donít. Many have commented on my perfect posture, I donít 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 wasnít 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 donít 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, ďI shouldnít have done thisĒ it isnít helpful. Whatís 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. Itís a slow recovery....

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

Jackie mentioned Gabapentin.......Many ladies here years ago reported taking this medication, I donít know if you are taking this one, I thought that it was quite powerful and didnít like it at all. I tried this medication for my neck years later, didnít 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
07-14-2016, 10:11 PM
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
07-15-2016, 12:42 AM
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 didnít 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, itís 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 wouldnít 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 doesnít matter what the excuse is. Just being tired can get you into trouble, and hurt. I donít 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 donít want to get into an accident having scoliosis. It can send you right back on the table again. I donít think there is any argument on this matter, my doctor sayís 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 1/2Ē 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. Thatís 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
07-15-2016, 11:12 PM
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
07-18-2016, 07:38 PM
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
07-18-2016, 07:59 PM
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
07-18-2016, 08:51 PM
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
07-18-2016, 09:35 PM
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
07-18-2016, 09:49 PM
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
07-18-2016, 11:03 PM
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
07-19-2016, 12:17 AM
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 didnít 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 didnít do much driving for a really long time. You can really save money, thatís 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 Iím an animal. I will eat dinner, my neighbor will call and offer dinner, and I cant say no. I donít 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 wasnít snowing down here....Funny, I remember freezing in the house, but not outside. ???

Ed

jackieg412
07-19-2016, 07:32 AM
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
07-19-2016, 01:52 PM
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
07-19-2016, 02:41 PM
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!

LindaRacine
07-19-2016, 11:49 PM
he said that he hasn't seen that at all in his patients. Weird.
Agree, definitely weird. A 10-25 pound weight loss isn't at all uncommon. It seems to me that the only time I hear people saying they didn't have a weight loss was when they had a lot of fluid build up.

--Linda

mabeckoff
07-20-2016, 02:15 AM
Check with your doctor about a treadmill.

Neither one of mine would allow it. They just said regular walking.

kennedy
07-28-2016, 10:25 PM
I should recommend going to your local ER to see if you might have a infection