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

[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]

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]

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

[jackieg412]

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.

[titaniumed]

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 doesn’t 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. That’s 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 didn’t hear any Chim Chim Cherie coming through, and I quit much faster...He he

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

Ed

[Jjohnsonphd]

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

[mabeckoff]

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

[susancook]

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

[lduran]

It takes time and patience

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.

[LindaRacine]

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

[mabeckoff]

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.

[titaniumed]

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 didn’t 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 couldn’t 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 didn’t work anymore and was in a bit of shock I guess. I didn’t 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 doesn’t 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 don’t get too upset if tomorrow is a bad day. It’s a see-saw recovery.....which goes on for months. Along as there is constant improvement, you know you are healing.

Weaning sucks.....it’s 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. Don’t 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 opioid’s will result in a change in pain levels, each person with its own result. Our CNS and other delicate systems are altered in “masking” 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, I’m 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 “big mountain skiing” 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 wouldn’t 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. I’m 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

[Jjohnsonphd]

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

[mabeckoff]

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

[titaniumed]

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 “Wow, your beat! How did you get out of the hospital?” 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 DON’T 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. It’s 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 BM’s. The constipation made me terminate meds at 6 weeks. I couldn’t take it anymore.

Get some walking sticks or poles and go outside.....It helps. Don’t 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 it’s 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 don’t 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 don’t dehydrate.

Hang in there

Ed