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

[Jjohnsonphd]

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]

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 opoid’s offer is never an easy thing. But, things do get better in time. Many report “steps” 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]

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]

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

[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

[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

[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

[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.

[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

[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.

[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

[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

[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

[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

[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.