Susan's surgery at UCSF with Dr. Hu on 19 and 22 March, 2013

[JenniferG]

The meds made me very tired as well Susan. But I just went with the flow. I slept like I'd never slept before. 9-10 hours at night and up to 3 hours during the day. I relaxed and gave in to it. Think of it as the best rest you'e ever had in your life. I'd climb into bed at any time of the day, as soon as my eyes felt droopy! And I'd be out like a light.

It won't last forever. As soon as you are off the drugs, you'll be wide awake, so make the most of it. Good healing time!

[susancook]

Tried to walk many blocks to the library. Couldn't make it home, so I rested on someone's steps until my husband brought the car. My R sciatica started to hunt. Bummer! Hope that it was a temporary thing. I am so wiped out. Time for a nap. Susan

[JenniferG]

Sounds like you over-did it Susan. Rest, and hopefully the dreaded sciatica will disappear.

[susancook]

It is a challenge sometimes to figure out what is the right amount of sleep and activity. I think that I was prove something, like I was back to normal.....pretty crazy thinking at 3-4 weeks. I sometimes wake up and for a few minutes forget that I had such massive spinal surgery. At my first move, reality sets in although I really don't hurt as much as I thought that I would.
When I was walking to the library, Sandy reminded me that when we tried to walk there in the week before surgery, I stopped to rest every 1/2 block since I was in so much leg pain. I had forgotten that.
Someone suggested keeping a diary as I helps you to remember where you have come from. Sometimes that is difficult when you are taking baby steps.
I try to get out almost every day for a short while. I think that improves my sense of normalcy.

My heart goes out to those who had spinal surgery and had problem postop. I read their blogs and know that i could be there. It is too soon for me to assume that I will not have problems. Even some of the best surgeon's patients have problems. I think that having postop problems is a crap shoot. Some is probably attitude.
Jennifer, thanks again for your support. Susan

[aileens]

I remember waking up in the middle of the night to go to the bathroom and when I came back to bed, I remember thinking it was the first time I had moved a bunch and didn't think about it at all. It was probably a combo of the meds and sleep, but it gave me hope that someday I wouldn't feel every single movement. I'm still not there yet, but After 2 10-hr surgeries and 11 not so pleasant weeks (9 weeks post 2nd op), I can say I'm truly happy I went through all this. I also hope I don't develop complications as I have read of people having ongoing issues many months out, but tonight I was able to stand for an hour as we waited for a table at a restaurant, then sit for 2 hours on a bench with no backrest. Before I would have been in agony but I came home and didn't need a Tylenol. The wine may have helped...

Hang in there Susan, it gets better...

[titaniumed]

Susan

Back when I was 4 weeks, I was sleeping around 4-5 hours per day, in 2 sessions. It was many months before I could sleep 8 hours straight through....I wanted to sleep but couldn’t get any quality sleep and was exhausted for 2 full years. That was a long time.

Try not to push yourself into pain with your walking.....certainly triggering sciatica pain is something I wouldn’t have wanted to happen again. I had the worst sciatica pain before my surgeries, I don’t know why I put up with that for all those years....That was not worth it.

Getting outside is important. I would do short walks multiple times per day with no goal setting. I think that since I was comfortable with just walking down 2 houses and back multiple times per day that I was fine with that. I increased to walking 3 houses after another month....so you can see that it was slow going.

On one trip, a friend brought his RV over and we went to Virginia City. After walking around on the crooked planks of this old western town for 2 hours, it took me 3 days of rest to recover from the pain from that trip. That was at 4 months.

I guess we all push the limits.....you will learn what you can do as time passes. I was walking a mile after 10 months.

Take it slow, you have a long way to go.

Ed

[susancook]

Decreasing drugs

How do you figure out how to decrease drugs? I called the Nurse Practitioner and from her brief comments, I thought that she said to keep pain at a 5 or lower. So I should just step down the Dilaudid every week or so? Should i take more in the day and less at night? I'm also on a Fentanyl patch which the NP is lowering.
Susan

[Irina]

How do you figure out how to decrease drugs? I called the Nurse Practitioner and from her brief comments, I thought that she said to keep pain at a 5 or lower. So I should just step down the Dilaudid every week or so? Should i take more in the day and less at night? I'm also on a Fentanyl patch which the NP is lowering.
Susan

First, I started increasing intervals and then decreasing doses. I went from 4 hours intervals between 10 mg of oxycodone to 6 hours, then I started doing 4 hours intervals between 5 mgs. I decrease the dose during the day and still on 10 mg at night so that I can sleep. Take it slowly, Susan. If it takes you a week to increase interval or decrease a dose, that's fine.

[Confusedmom]

Susan,

If you want to avoid bad withdrawal symptoms, it's good to take it slow and reduce one drug at a time. I decreased dosage first. Not by choice; they just refilled me at a lower strength. Then I dropped middle of night doses. Then I started increasing hours between during the day. Sometimes I would get "stuck" at a dose for a couple of weeks because the pain was too bad to go lower. I felt okay with that as long as I wasn't going backwards. I was 4-5 months postop before I was totally off narcotics. Then another month or so with the Tylenol. Oh, I did replace some doses of Norco with plain Tylenol when I was weaning. It seemed like it took forever, but now I'm not sure why I was so stressed about it. Take your time; you'll get there.

Evelyn

[susancook]

When were you off regularly scheduled drugs?

Thanks everyone for suggestions.

I know that everyone is different and certainly each person had different back problems, but when were you OFF regularly scheduled drugs and just taking maybe one or two Tylenol a day? How many weeks out?

Susan

[Irina]

Thanks everyone for suggestions.

I know that everyone is different and certainly each person had different back problems, but when were you OFF regularly scheduled drugs and just taking maybe one or two Tylenol a day? How many weeks out?

Susan

Susan,

When I told Sharon at my 5 weeks follow-up appointment that I was on 40 mg of oxycodone per day and tried to wean off of it, she was surprised that I was able to manage on such a small dose. She said that people with the magnitude of the surgeries that I've had are usually on narcotics for 3 - 6 months and that I should not get ahead of myself with weaning off oxycodone. Anyway, I am down to 30 mg per day now, but it's not easy... I don't know how your surgery is compared to mine, just a data point...

[leahdragonfly]

Hi Susan,

I am glad to hear that you are doing so well and so pleased with your result at this early stage!

The drug weaning is a very individual thing. There are some who are off narcotics within a matter of weeks, and there are others as Irina said who are still taking narcotics at 6 months. Don't push yourself to get off the drugs too quickly while you still need pain relief. You will be able to decrease them when your body is ready.

I don't tolerate narcotics well---they make me extremely nauseated. I took myself off oxycodone and oxycontin after my first surgery way too soon, because I couldn't deal with the nausea and inability to eat any more. I switched to Tramadol and tylenol. I suffered a lot of unnecessary severe pain and my husband was very worried about me. He begged me to take more pain medicine and I should have listened but didn't. I found at around the 3-4 month mark that my severe pain was gone, but I still had very significant "aches and pains" for several more months. Tramadol didn't help this pain so much and I was just taking tylenol by around 3-4 months with a tramadol 1-2 times per week.

After my major revision surgery in 2011 I think I was off oxycodone by 3-4 weeks, again because it made me feel so bad, and I was able to switch to tramadol with tylenol. The revision was somewhat less painful than the original surgery, so the tramadol was adequate (but again not ideal) by around 4 weeks.

Your med weaning will depend a lot on what you were taking regularly before surgery. Like Irina suggested, I stretched out the time between doses at first, especially at night if I could sleep through. I started stretching out my daytime doses by 30-60 minutes, no more. I could tell when I was overdue for a dose of oxycodone because I would start to feel anxious, sweaty and jittery. Next I cut down the dose strength. You just have to kind of work on it depending on how your body feels. Once your doses are down and you change from severe pain to significant aches and pains, you will realize that the narcotics don't really help so much. I definitely remember a time from 3-9 months or so where I still had a lot of significant daily discomfort but it improves over time.

There are others here who have been on regular narcotics for 6 months and beyond, it just really depends on individual pain levels. I think if you search the archives you can find detailed threads about drug weaning.

Hang in there and keep up the good work! When are you coming back to Oregon?

[susancook]

Susan,

When I told Sharon at my 5 weeks follow-up appointment that I was on 40 mg of oxycodone per day and tried to wean off of it, she was surprised that I was able to manage on such a small dose. She said that people with the magnitude of the surgeries that I've had are usually on narcotics for 3 - 6 months and that I should not get ahead of myself with weaning off oxycodone. Anyway, I am down to 30 mg per day now, but it's not easy... I don't know how your surgery is compared to mine, just a data point...

There is not a first place prize for the one who decreases pain meds the fastest. After I wrote the comments about decreasing pain meds, it occurred to me that I was battling with myself in an effort to prove something. Unsure what I am trying to prove to myself or anyone else.

I am trying to listen to my body.
Susan

[susancook]

Hi Susan,

I am glad to hear that you are doing so well and so pleased with your result at this early stage!

The drug weaning is a very individual thing. There are some who are off narcotics within a matter of weeks, and there are others as Irina said who are still taking narcotics at 6 months. Don't push yourself to get off the drugs too quickly while you still need pain relief. You will be able to decrease them when your body is ready.

I don't tolerate narcotics well---they make me extremely nauseated. I took myself off oxycodone and oxycontin after my first surgery way too soon, because I couldn't deal with the nausea and inability to eat any more. I switched to Tramadol and tylenol. I suffered a lot of unnecessary severe pain and my husband was very worried about me. He begged me to take more pain medicine and I should have listened but didn't. I found at around the 3-4 month mark that my severe pain was gone, but I still had very significant "aches and pains" for several more months. Tramadol didn't help this pain so much and I was just taking tylenol by around 3-4 months with a tramadol 1-2 times per week.

After my major revision surgery in 2011 I think I was off oxycodone by 3-4 weeks, again because it made me feel so bad, and I was able to switch to tramadol with tylenol. The revision was somewhat less painful than the original surgery, so the tramadol was adequate (but again not ideal) by around 4 weeks.

Your med weaning will depend a lot on what you were taking regularly before surgery. Like Irina suggested, I stretched out the time between doses at first, especially at night if I could sleep through. I started stretching out my daytime doses by 30-60 minutes, no more. I could tell when I was overdue for a dose of oxycodone because I would start to feel anxious, sweaty and jittery. Next I cut down the dose strength. You just have to kind of work on it depending on how your body feels. Once your doses are down and you change from severe pain to significant aches and pains, you will realize that the narcotics don't really help so much. I definitely remember a time from 3-9 months or so where I still had a lot of significant daily discomfort but it improves over time.

There are others here who have been on regular narcotics for 6 months and beyond, it just really depends on individual pain levels. I think if you search the archives you can find detailed threads about drug weaning.

Hang in there and keep up the good work! When are you coming back to Oregon?

Dr. Hu said that people who take a lot of narcotics preoperatively have more difficulty postop. I took some narcotics preop, but found that they did not help the R sciatic pain, so I quit. I am pleased to find that they helped me postop.

I use a lot of ice bags to relieve the tightness in my back. My back and thighs are quite numb.

I don't know how anyone prepares for this journey and I don't know how you faced the revision, Gayle. Dr. Hu estimated that I had a 1 in 5 chance given my preop condition, age, etc that I would need a revision.

I am glad that I achieved my academic success before the surgery. My brains are really scrambled! I have difficulty remembering words. That is probably due to the anesthesia or maybe some hypotension in surgery. I'm hoping that it comes back or my writing and speaking days are limited.

My 6 week preop visit is on Monday, then back home to the Northwest. I have lots of questions for Dr. Hu. I do remember her visits postop but I don't remember what we talked about. I hope that I didn't sing "Somewhere over the rainbow" for her in response to one of her questions.

Susan

[JuliaAnn]

There is not a first place prize for the one who decreases pain meds the fastest. After I wrote the comments about decreasing pain meds, it occurred to me that I was battling with myself in an effort to prove something. Unsure what I am trying to prove to myself or anyone else.

I am trying to listen to my body.
Susan

Yes, listen to your body! It will let you know what you need. It's crazy to go off meds too soon. I stopped all meds around 7 weeks Only because I kept getting vertigo, severe constipation and my blood pressure was all over the place. I had to decide which was worse, the pain or the debilitating side effects. I just couldn't live with erratic blood pressure and vertigo so I decided to tough out the pain. There were days in months three and four where I nearly couldn't stand with the pain. I probably should have tried another pain medication but decided to tough it out. It was brutal. I do NOT recommend going off pain meds too soon. I noticed a big decrease in pain issues during the fifth and sixth months so take your time. You'll get there.

Each night when I lay down during the first months, I felt like I was gently cracking open a fragile fusion at one spot in my back. It hurt like crazy and made me weep at night. But then one night, March 10th to be exact, I did not feel that tiny "pop/crack" and searing pain when I carefully logged rolled into bed as usual. It never happened again and I think on March 10th, that was when the final vertebrae fused. That was five months and one week after my surgery. Growing new bone just takes time.

You're right, I don't know how anyone can prepare for this surgery. I remember all your posts on the board asking questions and your hesitation in getting surgery. The hardest part is now behind you! You're doing great! Love your sense of humor.